Master of Irony

Learning

2012-01-29T23:55:00.003-05:00

As I watch my finances reach freak out level and I continue to shift things around to make things work I am discovering how much I took for granted. I just eliminated $11/month with subscriptions I basically had been too lazy to delete. I took the time to ask and found out I don't need a phone line to have DSL, saving me about $60/month (I may have to add some cell minutes so maybe only $40 but we'll see). I can't do much about utilities until I have gotten rid of a few financial things that prevent me from qualifying for aid programs. I think I will qualify in a month or two. But already I've cut about $100 and really won't suffer for any of it. There are plenty of things that are going to be very hard and in a way the things I have no way to cut back and save money are the hardest to cope with. Dr. Mind is going to see me at a very reduced rate. This is very hard because I don't know what to tell them I can manage and I feel really bad accepting this but was told that I am well known there (it's true, therapists use my name and I don't know them; comes from being the longest term client and there for all but 2 years the place has existed) and that this is how they can help and I need to let them worry about that part. Except then they asked what I can afford and I do not know what to say. Not only do I really have no idea the amounts I'm sure of are so tiny to be pointless. He brought up the other day that cutting back would save me money. I am not remotely comfortable doing that and yet I am worried that suggestion came to help them not lose so much money while being kind to me. The last I knew from Dr. Brain she wanted the twice weekly sessions to be very long term. And practically they are important; I pretty much need someone to be asking me if I am in danger because I don't know I could volunteer that yet. And the only way to get into my large quantities of meds is to have Dr. Mind give me my key. That means if I make a mistake grabbing pills it's important to get in there soon, and it is also important to be able to put away new bottles of pills. So giving up that support would be pretty bad. Yet the twice a week thing is unusual, at least where I go. Everyone seems ok with it because it works for me and time has shown this, but when they are getting into essentially donated time it's harder.

Some of the harder things are still coming, like telling the hospital I can't pay them $1500, or going to find out about food stamps, etc. I am happy to have the programs available and know that this is what they are in place for, but it's strange to be filling out so many forms and trying to explain my income last year has no bearing on now. I discovered while looking at some social security stuff that one way it's easy to tell how sick I've been is that I never made the kind of money I should have. The early years when I didn't have trouble working (at least less of it) I was a new grad with a lower income. Then the rest of it is broken by periods of disability, unpaid leaves twice each for a few weeks, and short periods of unemployment. Plus there were a few years I didn't work full-time.

On the other hand years of meticulous paperwork that is both dictated by and scrutinized by the government have given me a hand with this application process. About a year and a half ago someone from corporate reviewed my documentation saying that the only problem was that I was TOO specific and therefore wrote extra. That is serving me well now.

I don't know how to describe how I"m feeling right now. There is a way that I feel a little better. I think deciding with my mom and for now we're working on my staying in my house until I'm ready to change that helped. I don't love it here and if I were in a position to just decide to move I would, but I do not want to move when I would have to buy a house that would not be likely to be as nice as this. This place has problems but I have spent vast amounts of money on roofing, windows, and doors and it is snug. I could never afford to repeat that and the difference those 3 things made in my home is so great I do not want to leave and not be able to fix it. There are other things but mostly I had decided to move in a sequence. This would not be following that and the one thing I promised myself was that I would buy a home that did not need top to bottom remodeling as this one has. I can't afford that and my decision making is different now.

While I am getting used to all of this I also feel like such a failure. I know that I tried as hard as I could and that I did more than would easily be expected of me. I know that 11 years (almost) is a pretty amazing run when I really couldn't hold a job or work very long without time off for illness. I know that I worked on medications that make work extremely hard. But I always thought if this happened I'd have more warning. And while I suppose I could have seen back in the fall that I wasn't bouncing back I kept thinking that until Brenda the ovary issue got so bad that I couldn't stand it I had been doing fine and would resume that.

I have always tended to have a pretty good memory about patients. It is because I was often supervising patients in 5 or 6 places when I was a new grad and nearly always at least 2 after that. So I easily could have assistants asking me about 40 or more patients. It was easier to memorize them. But one thing that I've noticed is that my mind may have been preparing for this ending more than I knew. The last weeks that I worked are so clear in my mind and I remember the last patients (the last month or two of them) in great detail. While other patients from home health certainly stand out none stand out like the last group. It's almost like I knew those were my final patients. I just wish I'd been able to say good-bye. One person in particular I'd worked with for months, had gone to her house worried that I couldn't reach her and discovered her having a stroke, and she was to be done at my next visit, which never happened. Another person I had just immediately clicked with. He will be the last treatment I ever did. I was so anxious to see him through his upcoming transplant though and I know he had it but nothing else. The last day I worked I saw him, had the next person stand me up, evaluated someone I had previously treated and knew wouldn't need treatment, evaluated another person who didn't need or want more than one therapy and started to see a final person who couldn't be seen because hospice had started with them the night before. It's weird to look back and think that was the final day because it was atypical and nothing about it gave any indication that I wouldn't soon be doing the same thing.

Anyway I should go. I think I have an appointment with Dr. Mind tomorrow but it's not on my appointment card. I am nearly positive they said Monday though. So I have a call in and if I don't have an appointment I'm hoping they can get me in. Which means I should try to sleep.

One thing I miss desperately is taking meds and getting sleepy. I hope that this will change soon.

So nobody worries

2012-01-28T23:08:00.001-05:00

I may not be posting as much for the next few days. I'm trying to fill out an involved medical history form for disability as well as completing my taxes. I can only do so long and I get frustrated, so the blog may be written (plus it's how I keep my promise to be journaling to Dr. Mind) but it may not be much for a few more days. Not sure what else my disability form involves but this seems to be a major form. I also have a week to print out a bunch of supplemental information for them and gather copies of many things. The taxes are more or less done except that I have to take all the massive amounts of medical information and divide them into categories. It is not an easy or fun process. At least I have learned over the years how to do it more efficiently.

So anyway, don't worry. The worst thing happening here is that when I was getting ready to go to sleep last night I rolled over, yanking on my weighted blanket, lost my balance and crashed to my stomach, punching myself hard in the nose. So I have a puffy nose now. It's a great look. And not at all a stupid way to get hurt.:)

Really though, I am feeling a little more focused right now and less upset. I got a lot of sleep today which helps. I'm sure the shock and anger and tears will return but being rested makes this so much easier.

Sometimes it is the dumbest stuff that is hardest. I need to see my scrubs to consignment or on ebay. I will keep a few since eventually I'm allowed to work a little bit on social security. But for now there is no point on hanging on to so many and yet saying goodbye is hard. I guess it's like the stethoscope, a reminder of the huge, unwanted changes.

Cute story

2012-01-28T00:47:00.001-05:00

I had an awesome day with my niece, something so busy I finally just slept 4 hours and hopefully will be back to sleep pretty soon. We had so much fun and she was perfectly behaved. Once at the library she tried to run off and just as I said her name she fell. This woman looked at me like "great, now she'll cry". Anne just looked up and said "fell" and moved on. She's finally old enough that I could say on the way into the mall "if you want to walk you have to hold my hand. If you don't we'll have to get the stroller". I never had to repeat that. We also went on her first train ride. It's pretty neat, the train drives around the mall. She loved it and even better they gave her a stamped ticket. She held onto that thing until finally it blocked what she wanted to do and then later I gave it back and she kept saying "ticket, ticket" and half the time that was in awe. I'd gotten a drink and some french fries for a few minutes snack after the play area was too full of kids too much older and rougher than she is. The parents tried but 3 year olds would just go around or over her while she climbed. So we just left. My sister called while we were having our snack and was on her way to meet us. Anne became insistent that Mommy was coming and would sit right THERE. So I called and mommy came and took her seat which thrilled Anne.

The best though is this message from facebook: Anne's last words before sleep tonight were "Fun! Fun!" I think she had a good day.

Me too and I needed it so, so badly. Things really feel less crummy finally. And I fell asleep about 8:30 and hopefully will get back to sleep pretty soon. That sleep felt so good.

Wonder how this will go over?

2012-01-26T20:29:00.001-05:00

I was up until 5 AM this morning because I am so overwhelmed and feeling I need to do this and this and this and this. When I saw Dr. Mind I tried to get out of the class I'm taking because I don't feel up to it and would get more out of it next time it is run. He basically said I could either reduce visits with him and go or I could continue the multiple visits and go. I am in no way ready to not see him as much. So I'm going. But then I took my car for an oil change. It's a long story but someone did massive damage to the thing that lets the oil drain. I knew this and had requested the part yesterday but they sent the wrong on. My car has been making a noise that turns out to mean "you're running out of oil idiot". I did check that and it was fine a few weeks ago but I very nearly ruined my engine. So then they had to call around for the part and drove to the next city to get it and then that was wrong so they had to drive back to the other city and back again (with traffic issues), and then it took 2 men trying as hard as they could to get the broken thing out. They thought they were going to have to replace the entire oil pan. So my quick oil change turned into 3.5 hours and so I missed class because of car problems. That will go over well with Dr. Mind I'm sure.

He said I look terrified. Sounds about right. Things are moving along and that's good. I have a meeting with social security on 2/6 which is apparently the next step of the application. I have other appointments to make but they are waiting for Monday. We are both waiting to hear from Dr. Brain. She tried to call him after I left the other day but he was with the next person. I see her next weekend and I think Dr. Mind is going to see if she can call him at home (which is not something he ever does, he is trying soooo hard to help) during that visit so we can all know what everyone else is saying/thinking. Which is likely to mean they talk, I cry. For someone who was terrified of crying days ago I cry a lot now. Apparently this is stage one in the really fun grieving process that I'm probably going to go through. And now that my depression is back to severe I'm on an even higher level of monitoring. It's so much fun.

I got a whole new perspective today that helps immensely. I said something about being concerned that social security will say that since I worked for 11 years I should be able to do so. Dr. Mind pointed out that I have worked and repeatedly needed long periods of time off work and I have not held down jobs for very long at all. And the reality is that in 11 years I have been off more than a year on disability over time and I've had 7 different jobs, and twice I was fired. So not such a great work history.

And now I have to find something to eat (everything sounds unappetizing except grapefruit so that's the choice I guess) and work hard on getting to sleep since I have to leave about 8 to babysit and lately I've barely been asleep at 8.

Also, I'm sorry because I'm fairly sure this is just plain whiny. I'm tired and cold and crying and it's not working well.

Stolen from Facebook

2012-01-26T00:39:00.003-05:00

I really needed to see this today. About 75% of the first column has crossed my mind today. Too many way too hard decisions. At the moment I think I am going to be packing my life into storage and moving in with my mom. We can convert her upstairs to an area for me so I'll have a living room and bedroom and another area. That lets this house be put in order for sale quickly and hopefully it will sell fast. Then she'll buy a home that I'll pay the mortgage on. There are huge downsides to this emotionally but ultimately it eliminates so much money. I have some checking to do on the effect on my eligibility for some benefits if I am not living alone since it could in theory raise bills by having another income in the household. But her income isn't mine so I have to check on that. It's tricky because I have a tax refund coming. That refund will pretty much be my last money until things are better. And yet it means delaying some things until that money has disappeared in the credit card void. I don't know. It is just a lot and it is happening so fast.

I also must say that a blog is an amazing invention. I had to fill out some incredibly detailed medical forms from the time when I had whooping cough and was seeing the dr. constantly and was on and off many, many meds in a few weeks. I also had to give dates of visits. The blog provided all of that nicely.

Anyway, I forgot about clothes that need dried and then I need to start figuring out how I'm going to sleep. I've asked for more meds because sleep is torture but so far I haven't heard anything from Dr. Brain. Dr. Mind called me today to give me some information and I think to check on me and he said he hadn't heard either. That part is really weird because if he calls and says "This is Dr. Mind (as opposed to First Name Mind) and I am urgently calling about a mutual patient, she'll know who" that's typically their code for Jen has a big problem. And her email isn't set on not available. So beats me. Perhaps she figures it can all wait until I see her next week.

As I said before, don't worry if you don't hear from me. Two big days.

Don't wanna talk about it

2012-01-25T19:32:00.000-05:00

I'm not going to write about the stressful stuff today. I just can't. I haven't even eaten much today because I'm so upset. I have a request in for more meds.

I am mostly posting to say if you've had trouble commenting this is a known issue without a solution yet. If you use Google Chrome it won't happen. I changed my comment format to a new window and that should help too.

I may be quiet the next few days. Please don't worry. Tomorrow is errands, Dr. Mind, oil change, kill time, class, home late. Friday is up early and down to where my sister works, babysitting, supper with my mom. Since I'm not sleeping well at all I figure this will wear me out pretty thoroughly. I hope.

I will be back soon and I'll talk about "it" soon too. Today I have just done too much of it.

Well then

2012-01-25T02:21:00.002-05:00

Obviously this wasn't the best day of my life. I've done several things like contact disability attorneys, look into some ways to help my budget, and painfully talked to my mother. She was actually wonderful. We're going to see how some things work out, but I think she's going to work another year and support me. I am confused as to whether she was aware of the amount needed to keep things going and how long the wait is. I believe she said she can manage the whole thing until I have income again. I hate that she won't retire but she said that she honestly has felt quite uneasy about doing so and that one more year working is not going to kill her. It still makes me very sad, but without her help I'm facing bankruptcy. If she isn't able to help as much as I think she did then I'll file for bankruptcy just with credit cards. I applied for 2 more cards last night while I still have an income (technically) and hope that I can spread some debt out that way. We talked about selling my house cheap and getting out but I won't be able to buy another for years if ever and giving up the earned equity at this point in my life doesn't seem wise. We talked about my mother possibly buying the house and renting to me, or she will assume part ownership of the house. I don't really want to stay here but I also think that it is better to refinance and stay put. More than anything I do not want to wind up renting. I absolutely hated it before, I was constantly stressed about damage and exceeding pet limits and noise from everyone around me and now it would be even a bigger issue with all the things that cause asthma. I truly think this is not the time to move. My mom isn't going to agree to that but the bottom line comes down to I am not well enough to maintain the house in viewing shape. The other option would be living with my mom until the house sold with my things in storage but that does not sound good at all.

I also did some reading on the social security website and I think I am going to do the first filing without a lawyer. 75% of claims are denied initially and at that point I'll seek help but the first stage is pretty easy and honestly would require me to do the hardest parts anyway. I do have a few things to clarify with social security tomorrow but if I am reading correctly I can do this first part myself and that makes me feel better. If I would get through in the first round that would save me 25% of the back-pay they give and if it's for the easy part that I can do myself I'd rather keep that.

I can't seem to settle down, but it has been 2 tough days and I'm just glad that I feel a little control. I hate that my mother is doing this but am so thankful she can. I'm doing everything I can to cut costs, like cutting my cell service to the minimum, hopefully my telephone/dsl as well (I wish I didn't have to have a landline but DSL is my only real internet choice). I am hoping to find a way to lower my car insurance a bit without running 50 credit checks and then finding out lower auto means insane homeowners with a lot of these places.

Anyway, I just yawned. I hope that means sleep is coming pretty soon. It is a bit hard to just relax at the moment.

We'll start with the rainbow

2012-01-23T19:07:00.002-05:00

As I've said very often when something hard happens there is a rainbow. Today there was a gorgeous, all the way across the sky, brightly colored rainbow for 5 miles or so of my drive.

That rainbow came immediately after I was notified that because of a hidden pre-existing clause on long-term disability I am unlikely to get those benefits. I cannot work at this time. For what I read it is quite unlikely. Right now it looks like I will need to file for SSDI, may well face bankruptcy, and today I got my last check. I do have a very large tax return coming and that will get me through a few months. For the most part I am facing some really big problems.

Dr. Mind called Dr. Brain while I was there; if they've connected it has been since I left. I have cried until my eyes feel like popping out. Somehow I need to go make some supper. I didn't eat lunch because the horror of that letter made me forget that I needed to stop.

That rainbow needs to come through for me. I truly thought this was all addressed. I feel sick with horror.

Sleeping. Nobody is home

2012-01-22T21:14:00.002-05:00

I haven't been extremely chatty the last few days and doubt I will be for several more, assuming things continue. I am falling asleep a little bit (not enough to really matter except in my own mind where 2:30 is MUCH better than 3, and 1:30 is an all out miracle) earlier and aside from getting up periodically for fluids or cat food I am sleeping 12 or once more hours. It would be ideal if I were sleeping at bedtime, not the middle of the night. But after so long without sleeping much at all this feels so good. I desperately needed a few nights (and days) of deep sleep. It makes coping with everything so much easier. So I'll be continuing to sleep as much as I can whenever I can, until a doctor tells me this is bad.

One thought for the day: Ending my career early is obviously painful. It's THE THING I most hoped wouldn't happen because of illness. And adjusting to it, as you've noticed, has been really hard. What finally occurred to me is that my mother is retiring in a few more months. And she's had 2 full careers, achieved a great deal, and loved what she has done in both careers. Yet even with 45 years of the 2 careers and a tough year or two at the ending she is sad to see it come to an end. And she will still be doing some professional work. On the other hand my ending is abrupt and not what I want or planned for. Nobody will celebrate the end of my career. For me it is not a transition as much as a huge ending (which will of course transition to something else although I have no clue what). I think I really wanted that 65-70 year old retirement thing. Not a party, but just the thing where you are celebrating the end of many years of hard work. Even though I know that my illness made me work much harder in 11 years than many do in 40 this is still sad and is another thing that isn't the way it is "supposed to be". Oh well. Other things will come along. I truly hope to babysit my niece once a week once I feel a little better. And I am for sure watching her this Friday!! My sister actually specifically asked me. I decided to meet them at my sister's work and trade cars with her and spend the day in the town where my sister works instead of driving another hour to her house. It's going to make nap tougher but is easier on me. I haven't been able to babysit since late October/early November.

And with that I must go as I've been washing blankets for hours and either the washer got mad again or it's finally ready to swap out.

The language of suicide

2012-01-21T21:03:00.001-05:00

One thing I've learned that I didn't want to know in the last month is that there is a lot of terminology related to suicide, most of which I didn't know. I know "suicidal ideation" (thinking about it); "plan" (a step that means it's really serious); "intent" (willingness/ability to carry out that plan". I was taught before this that there are active suicidal thoughts "I want to take every pill in my house" and passive thoughts "I wish my lithium toxicity had killed me". In the hospital they replaced the passive with the term death wishes which I hate and refuse to use unless forced. Yesterday I learned a new one. Dr. Mind about about "suicidal gestures" and I had to ask what that was. It means doing things in prepartion to a plan to die, like getting bills paid, setting up the scenario which is chosen, making a will, writing a note, etc. And then he said or something like putting a gun to your head like a trial run. I think I looked at him like "yeah right" which is when he pointedly added "or keeping pills where you can stare at them and plan". Um, yeah. No longer feeling smug that this wasn't me and point taken; what I was doing was plenty dangerous. I suppose the time will come when we have to talk about that even more. I do not want to go through life at an even higher risk than I was before, although my risk moved up because of this.

When I was in OT school I remember being taught in general how to react if a patient said they wanted to die. You were to ask if they had a plan, if they had access to whatever danger they were discussing, and you were to get as many details as possible from them, and then you got them help, immediately. You documented in as much detail as humanely possible.

When I worked in psych I had to do this several times. The worst then would be that people would ask you to keep what they were telling you a secret before they'd say anything and I'd have to explain that while I would keep anything confidential that I could if they told me they were suicidal or wanted to hurt someone else or if they told me that another human was in danger I could not keep the secret. I don't remember most of them being too reluctant; I do remember there being a lot of paperwork and in general not a lot happened because for the most part our patients were in a pretty safe environment. They just were on increased monitoring and the psychiatrist would be notified along with the patient's doctor. Sometimes meds were given, sometimes not.

A few years ago I had a patient who was very depressed, cognitively intact, and who had been a very successful community member and suddenly found himself to be old and sick. He struggled hugely with this. This happened to be someone that I got to be close to. One day he laid out a detailed plan to kill himself upon leaving the nursing home. He was very serious about it. I got the usual information and told the nurse. Who actually laughed and told me he certainly wouldn't be doing that in the nursing home. Ok, but what about home? It took me several days to get them to listen and get a psychiatrist involved. By all rights he should have been sent to gero-psych the day he told me that. After that day I had to argue because the family had gotten rid of the guns in the home so he was safe. I had to point out to someone you can't make a house totally safe unless you are an expert, what with meds, cleaners, drain openers, razor blades (even after scouring my own home for those 3.5 weeks ago I found more yesterday), etc. They kept insisting he'd be fine until the psychiatrist saw him in a few weeks. I don't think anyone ever thought about what it feels like to be suicidal. Having recently been quite suicidal yet being kept from harmful things in the hospital I can say for certain that while it is good to know you are safe because you are being protected it is also frustrating because you know that a few lies and you're home and able to do whatever you want. Even if you decide in the hospital it isn't what you want as I did it is frustrating and scary to go home and suddenly have to be responsible for yourself again. As Dr. Mind told me on the first day home he can hold on to every dangerous thing I own and that doesn't mean that I am really safe. People who are suicidal need to be helped with coping skills rather than just given false security than only lasts while in some facility.

I don't think it is possible to understand the desire to die that is so strong you are willing to make it happen yourself. Even though I've had suicidal periods off and on over the years I didn't completely understand that until the last month. I think that's why I find all the terminology to be weird. Terminology just helps keep in distant and at least in my experience it is vital to look closely at the feelings, the causes, and the solutions. Even when the solution is very basic, as mine currently is: lots of therapy, lots of monitoring, limited access to unsafe items, increased meds. Big words do not change any of this. In fact, for me, the most vital thing in staying safe is being held accountable for telling through frequently repeated questions. I can't say that would have helped much 6 weeks ago as I may have at least tried to lie if asked directly, but I also probably would not get away with my lies. The lying I did get away with was not so direct.

One of the sessions of my class is on suicide. I am hoping to read that chapter ahead quickly and I may ask to be excused from it. I am not sure I'm ready for that. We'll see. If nothing else I know lots of phrases now that should help!

Will I publish this? Let's see

2012-01-20T23:37:00.001-05:00

Obviously you won't know if I don't. It's just weird to go into a post and know what I'm going to say but not if I'm going to share it.

With the sleep last night and lots of quite today and a very calm weekend anticipated since we're getting snow and ice on top of snow from yesterday I actually feel a little more peaceful than I have in so long. But the weirdest thing? I mainly feel this way because it really was good to go through things for the long-term disability thing Dr. Mind has to fill out and admit to what I can't do. He was worried that if I even got my hands on this form that my feelings would be hurt. I told him I know that I'm pretty limited and am not going to be upset by having that confirmed. There is so much and I judge myself for not being able to do simple things. But when I listened to myself yesterday it suddenly made sense that if I can't do A I also can't do B. My example at the time was laundry. It often takes me multiple washings to get a load done because I start them, forget them, they stink, I re-wash once or twice and even when they finally are dry I usually forget to retrieve them until I wonder why I have no socks to be found. I didn't really explain all this to Dr. Mind.

Usually it is better to focus on positive (ie, yay, I slept). But a realistic picture is good too. So I thought I'd list things and yes or no them. This is how the insurance form is. I am, however, going to make some places that the answer is no because I can't consistently do it but I am doing it some and you will see (if I let you read this) that I need some sort-ofs to make up for a zillion no's.

So, here goes:

Laundry sort of
Vaccuming No
Picking up sort of
Mailing things no
Dishes No (bare minimums and don't use many)
Cooking No
Mopping No
Changing sheets Sort of (needs to be more frequent)
Showering Sort of (better than pre-hospital but still not daily)
Taking Night meds Yes
Taking morning meds Sort of (forget a lot)
Cat feeding Yes
Litter boxes Sort of (forget until they smell)
Going to the bank sort of (tend to hold checks as long as possible)
Knitting yes
Reading sort of (children's books)
Grocery Shopping sort of (always forget things, difficulty with decisions makes it take forever)
Car care No
Getting Dressed sort of (tend to hang out in pajamas unless I have to do otherwise)
Hair care sort of (see above)
Oral hygiene sort of (forget sometimes but better than other things)
Med management sort of (hard to remember to place orders)
Paying bills sort of (tend to be right at deadlines; car payment late partly because I forgot how my online banking works)
Working No
Making appointments No
Phone calls No
Going to appointments Yes
Wormie care No. Neglect is showing in my population. Probably will have to start over.

Undoubtedly there are more. But I am strangely ok with this huge list of things I can't do (more or less). Because if I see this and know that well me couldn't stand this stuff it is easier to know I am not well. Probably makes no sense to anyone but me.

I SLEPT!!!

2012-01-20T16:22:00.002-05:00

I SLEPT, I SLEPT, I SLEPT!

And by sleeping I mean asleep at 1:30, awakened by the cat a lot of times and fell straight back to sleep, woke in the morning and realized I was tired so slept some more, was awake for a while this afternoon and instead of strictly adhereing to "no afternoon naps" I passed back out for another hour.

So all it takes is driving home in a snowstorm for hours after a great discussion of how sick I am and paying half my annual income (not really) for a medication. I can repeat that easily, right?

I actually feel more relaxed that I can remember feeling in weeks? Months? A year?

Thank God

The sad, green stethoscope

2012-01-19T21:24:00.002-05:00

My time with Dr. Mind today was hard in a new way. He has paperwork for long-term disability, a lot of it. He wanted to go through some things with me and then he's going to contact Dr. Brain so they're filling things out consistently. Pretty much what he wanted to be sure I knew was that he has to mark things as very low and that because of how the assessment is done I will come out looking extremely impaired. I know this, it's not really a secret that I'm very limited in what I can do, but he wanted to be sure if this assessment was ever shown to me somehow that I didn't think he was picking on me. It was hard because we had to go through many things that I had to admit that I struggle with or am not able to do yet, and many of them are pretty basic. Again, I know I can't and he knows I can't but having to verbally admit that it is still incredibly difficult to shower as often as I should is tough. And looking at my life is kind of sad. One of the things that is used to help show how impaired one is and compare that to the previous year is called a GAF (Global Assessment of functioning) score. You can read more here. I have to ask him about this because I think the number he told me I would be at is too high (he said around the low 40s but since I can't function at work, socially, with selfcare and my mood is severely impaired I think I probably am lower and if not I'm curious why). As I told him, I know the picture is not pretty and I can face that. I just can't move past it.

The other thing that was hard (true, but just sad to hear someone else say) was I had told him that between crying quite a bit since my last session and getting a little more/better sleep last night and making myself laugh a little I felt a tiny bit better. Because of what we were discussing it seemed obvious that little blips of feeling better have been the only progress I've made in recent months and unfortunately there have been enough blips that even Dr. Overly Optimistic Mind isn't reading a lot into it. I think he felt that the crying may have made me feel just well enough to have that time moment of betterness, but at the same time he kind of said that the tears are good but that I probably am going to have to stop distancing myself so much that much of my crying is my discovering that my face and shirt are wet and my nose is running. Doing that is just another sign of my protecting myself, although crying at all or feeling angry at all or sad is good and I assume a positive step. Oddly Dr. Mind seemed to know that I left more upset that I knew the other day and I think he left things open for me to cry some since it wasn't happening otherwise and I need to do this. He also told me if I really want to kick my mother it's ok. (joke, but another sign that her attitude is about as annoying as I think it is).

I killed time in the city and even called my mom to have her check the forecast because I wasn't sure I was safe to stay for my class. I was on my way from the pharmacy at one end of the city to the class diagonally across it and got a call the class was cancelled. Fine, I had one more quick stop to make that I'd intended to use to kill the last few minutes before class; I just needed some fruit. The roads were covered but not bad. 20 minutes later (30 at most) there had been massive snowfall and I drove home in low gear going 15-20 mph most of the 60 miles. It took an hour to get out of the city; normally from where I left would be 10-15 minutes.

While I was bringing groceries in from my trunk I realized that I had everything out but my therapy bags and that I really needed to take the opportunity and make sure that the only thing in there that belongs to me, my personal stethoscope (read: not cheap), was out since someday those bags will go back to the office and I've been putting off looking inside to retrieve it. So now I have a green stethoscope in my living room and the gravity of the low functional ability we talked about plus the only reason that I would bring that inside, risking not having it at a patient's home, is that I don't need it in the car anymore. Which was sad enough to bring on a whole lot of painfully sad thoughts and tears just below the suface (I imagine I can expect to cry in the next day or so when I least expect it.) That stethoscope represented so much though. It had a lot to do with feeling I was independent and competently able to identify medical issues. It meant that I was doing something that I felt was worth the investment into owning my own, because the company provided one was not very good and I couldn't hear well through it. It was a sign of commitment to home health as outside of school when I had a very cheap one I've never needed one. It is something I won't get rid of. I have no idea what I'll do with it but it is somehow symbolic of a time that I really enjoyed in my life. (Also, I want all the therapy crap out of my car. It takes up huge amounts of space and is doing me no good. If I bring it inside I figure that will be the day they want it back. It's strange what causes the most hurt; digging through my bag of vital equipment was physically painful despite knowing for months I needed to retrieve that stethoscope.

I have absolutely no idea what the other thing I meant to say was. Guess the stethoscope threw me more than anticipated. More later I guess.

Good to know

2012-01-18T23:42:00.005-05:00

Sometimes when recovering from a bad period it can be really hard to share tiny good things with anyone (blog, friends, Dr. Overly Optimistic Mind) because they are positives and hopeful and all kinds of good stuff but they are not a sign things will be better tomorrow or next week, just that things are a little better for that moment. Dr. Overly Optimistic Mind and I have had a couple battles about that because early on something tiny would happen, he'd want me to believe it meant I was getting better, and I knew from experience that it was nothing more than I had a good 30 seconds and eventually it will be 45 seconds.

But after much crying the last couple days I actually just made a joke. Not an overly funny joke, and it's political so if you don't like it please don't hate me, but I read the Duggars are campaigning for Rick Santorum and it occurred to me that he'll easily win one state then and I giggled.

There were a few laughs on my birthday with my niece. We skyped and it was awesome. My hair has always puzzled her because the curls are something she's only seen on me and because my hair is long and heavy and curls in my eyes sometimes I wear it down, I wear ponytails, and I wear buns (which are now almost too heavy to do without hairpins so those may be done). I have an adorable picture of her comparing my hair to ruffles on her shirt. This time she immediately got it: "Ponytail!" and showed me her ponytails. Then she saw my mom's ring and said "RING!" I asked if she had a ring. "yeah" followed by scuffling and her dragging my sister's hand with wedding set into the picture. How smart is that? Then my sister told her to say happy birthday Jen and instead she grinned mischeviously and said happy birthday to my mom. My sister said to her "No, Jen. Grandma's birthday is in SEPTEMBER, a long time away." She just giggled....One dog was in the screen and she kept asking for the other until we got him in the picture. She's adorable and smart and developing a sense of humor all her own. Her father has a dry sense of humor that at times kills me and I think she's heading the same way.

I just laughed again at Michal sledding because she should. Probably true out there. I must admit though that there is a sledding hill near here that is something I never got to sled on: a big hill that is cleared. We sledded (I guess that's a word?) down a hill that was a pasture and straight into the woods. The trick then was how far you could go without hitting brambles or trees. We had contests. So I suppose someday I should get a sled and during the day when the kids are in school I should fly down that hill. But probably not until my ankle is repaired if that's possible because I don't want to have a forced repair because I slipped and fell down this huge hill on my butt.

Anyway, there are a few good moments today. Hopefully tomorrow there will be more.

Sharing the wealth

2012-01-18T19:31:00.002-05:00

I posted a while back about coming home from the hospital to find my cat had pulled hair off her belly and had blisters from licking because she was anxious while I was gone. I've given it a few weeks per the vet and she is still doing it every time I'm gone for a few hours or more (the longest I go is 8 hours but she panics I think). So I called them today and she's starting on an antidepressant. I'm excited though in that the medication is a gel that I dab in her ear and not a pill to shove down her throat. Since she also gets confused/anxious in the night sometimes I'm hoping this will be a good thing for her. On the other hand I am slightly amused that because I'm bipolar my cat needs to be on psychotropic meds. I find it even funnier that we'll both be on transdermal antidepressants (my patch, her gel).

Anyway, I'm having a great time going around the internet and changing my passwords. My information was among that taken in the Zappos hacking and they recommended changing any password similar to the Zappos one. I was fine with one password with them but I don't remember what I used with my very old account that was hacked along with the account I've been using for several years. So I'm changing everything to be sure. I hate changing passwords so I don't do it nearly often enough anyway. Maybe this will teach me.

Ugh. So not what I needed at this moment in time. I am also now a bit afraid to use Zappos, yet I LOVE Zappos.......

New Rules

2012-01-16T23:46:00.002-05:00

It has taken me many hours of thinking about my conversation with Dr. Mind to understand one part. It also took a lot of tears; the number of times I've realized I had tears running down my face today has been amazing. Even driving home the plan was to stop and buy fruit. I couldn't because I kept realizing I was crying while driving and I'd rather not cry in the produce department. After he realized what I meant about feeling I had broken the rules and failed and I think (but am not sure) that he also figured out that I feel like I failed because after so many years I got worse when everyone has put so much extra effort into me. I've never heard him speak quite like he did today and I can't explain that so well. But he tried hard to take the guilt and shame away. So much of it is because I promised him years ago that if I had a desire to hurt myself that I would tell him. When that truly was tested I did not keep my promise. So now we have a new system, that I merely need to say yes or no honestly when he asks me and he will ask me much more frequently than in the past. I honestly don't know if I would have answered differently had he asked me about it a few weeks ago. But it is much easier to answer yes or no so I am hoping that this is a positive change in the system, especially now that we know precisely how embarrassing I find it to talk about this. I still feel sad and guilty that I did not do what I knew to do, but I admit it helps to know that the anger I figured he had to feel just wasn't there and it seems mostly he just feels bad for me. That too is sad but it is clear he feels I'm sick and he's not sure what will happen but he seems willing to keep trying everything he can. I didn't think he had given up, but I did think that he would not be happy that I broke the rules. I'm glad that conversation happened.

Today, quickly

2012-01-16T19:01:00.000-05:00

If you are unable to comment please email me at masterofironyatatt.net

I don't have much to say tonight. I saw Dr. Mind and cried for 20 minutes or so about the changes in my life and how painful it is to see the things that are changing or gone from my life. And we accidentally went into something I needed to hear but which is still making me cry. I finally brought up how angry I am that I can't make eye contact since I worked so hard to get to the point I could do that. And suddenly out it came how awful I feel and how I keep expecting the doctors to be angry because I promised to tell if I was becoming unsafe and I did not do that. I don't think he had any idea I was feeling like that. A lot of reassurance later I still cry if I think about it but at least finally that came out. He seemed to be fairly horrified that I've been thinking this; I think he thought my ashamed act was mainly because of my mother and her guilt. Which is a bit part of it (yesterday it finally occurred to me that she thinks I went to the hospital to avoid Christmas) but I also feel so guilty for not following through with the one promise I have ever made to him. It seems he feels guilty for not asking me about it more a month ago. I hadn't thought much about him feeling that he didn't help enough when that happened because I don't think it was him that didn't do things. But it seems he feels bad too because he doesn't know how to make this all better right now. And I know the reaction to my admitting that I am so upset because I lied was real, not just some generalization like "can't change the past".

So I have no idea what to do with this information but at least I went a lot farther than in the last few weeks today.

Time Travel

2012-01-16T00:19:00.001-05:00

Becky asked:

When you were spiraling down last Nov and Dec, if one of "us" here would have asked you point blank if you felt suicidal, would you have answered honestly? Again, not sure that is an appropriate question, so ignore if you want.

The answer is no. There are a few reasons. It's hard to explain but I was living 2 lives. Part of me was ready to give up. I don't think that part had a lot to say. And on the other hand I was aware that I was having passive thoughts (wish I could die) but that happens a lot. I think I was protecting myself from the scary things I must have been thinking and it wasn't until I was not fighting to stay safe (in the hospital) that I discovered what a dangerous situation I'd been in. It's very hard to explain this because my memories seem to have 2 levels to them. The suicidal stuff was of course part of the depression, but it's almost like the depression was severe enough that I was getting pushed closer and closer to the edge of a cliff but I was mostly blinded by the lack of sleep, profound sadness, anxiety, and horror at how I was living. I did not look too closely at the scary stuff.

Sorry I can't make this make more sense.

6 years of blogging

2012-01-15T22:15:00.001-05:00

Is anyone besides Michal unable to get the comments to open and work?

I made it through my birthday although I did realize that my depression has gotten much worse in the last few days. Dr. Brain is aware and Dr. Mind will tomorrow.

I went out to dinner and skyped with my niece for a bit and that took all the energy from today (I've had little sleep in 2 days. Thankfully Dr. Brain said to quit trying to get my lithium level done for the moment so I can sleep when I sleep and not try to get up. She seems to agree that a sleeping pill is not going to do a lot of good when I'm not sleeping because I'm sad).

Becky asked about something I'd said about looking back. When I say that I'm meaning I am going back to where I was a long time ago. 10 years ago I had no real sense of how I would be able to keep working and managing with uncontrollable symptoms. The different was that bad then it was feasible to just do it, to borrow from Nike. For a number of years I could push through through the force of my personality and I was ok. My symptoms were not well controlled and were really hard to manage but I could manage enough to succeed. I thought that if I could get through those early years that whatever I had after that I would retain. Instead I've taken steps backward while life has gone forward and now I can't do that barely managing but doing well enough to have a career. Backward isn't the right term really I guess because I was not ever here.

I see the recent years as having 1-10 rankings. Age 34 was a 10. The stresses were just normal work or life stuff and otherwise I was indistinguishable from others. A year ago was a 7; things were impaired but it was physical and good things awaited my physical recovery. I was positive that I just had to get healthy and I'd be back to that 10 because there really wasn't anything to indicate that I would not recover from surgery and be fine again.

Why I was so upset the other day is that I looked at the future. Right now I have psych appointments, mental illness class, and nothing else on my calender until vacation in November. And I can't just fill things up because right now handling 3 appointments most weeks and 4 week I see Dr. Brain is enough. But I have never in my life no matter how sick I was had nothing coming. Even when I've not worked I always had work ahead of me. Right now it feels like my future is so very limited. I know that we'll keep doing things to help my depression lift and that I'll someday feel like scheduling some babysitting days with my niece (I'd like to go down and babysit every other week one day when I can do that.)

It just scares me. In the past even when I've been unable to do a ton there have been things that were being given me as nuggets to look forward to. I've been able to see progress and know I can at a minimum try working. This time trying work again is not even on the table. It's not been eliminated but it is goofy to talk like that is coming when the reality is that something changed in me. I supposed I shouldn't say I went backwards as I have never been here before. I did, however, get much sicker and then the part I'm mostly fed up with myself about is that I was so insistent it would be fine that I did not catch that nothing was giving cause to look forward. The sheer relief Dr. Mind showed when he knew that I was aware that this may be the end of the tracks for the life I've had in the last 11.5 years was huge. Months ago he was suspecting that I had reached the end of the line.

The one thing with bipolar is that it is not static. At some point a new medication may be released that gives me some function back, but we will always be more cautious with stress levels and if this depression can be lifted (and I do think that will happen) then we will figure out what amount of stress I can handle.

The letting people down thing had a bit more relevance when I was in the hospital. I know and they know that I did not cause things to get worse. However what I am fighting with shame over is that I have a very few rules I life with. One of them is the promise I've made so many times and up to now has more or less been kept: If I felt like hurting myself I was to get help immediately. Suicide is kind of a creepy thing and when you feel tremendously depressed you often are too ill to act on what you feel. The danger comes when either you impulsively feel "THAT was the last straw" or when you start to have more energy (this is particularly true for me because I usually leave depression and head for mixed states where I get little bursts of energy) then you are at greater risk for killing yourself if the suicidal thoughts are serious enough. It's hard to know what serious enough is and for that reason I've made promises that I will tell about anything of that nature. As it turned out when I was somewhere safe and talking to other suicidal people as well as to Drs. Mind and Brain, I not only had not told about thoughts that had become to be the main thing I thought about, and I truly had no ability to disengage enough to see for myself that if I was laying in bed staring at a particular bottle of not-incredibly-safe meds knowing that if something better didn't come along that I could ingest those anytime I felt done. Trying to decide when I was done bought me enough time to get to the hospital, but it still took a number of days before I was willing to admit that not only did I lie about the feelings I had I also lied about something much worse, which was that I had a plan of how to die and I fully intended to carry it out the day I felt unable to handle it. That is what makes me mad at myself; there is one rule and I broke it. It's been really weird because the hospital dr. felt that I was a reformed creature and would not be at an elevated risk. My doctors, who know me so much better and know that I have always complied with the telling rule, they've taken it ultraseriously. Both of them know that I have never gotten near this suicidal before and that I may have gotten help but totally outside of the promises I'd made in the past. So I also feel bad because I scared them and made me so they have to babysit for however long it takes to be safe. Which may take awhile because as long as I slip over the edge into severe depression over and over again I need monitoring.

Mostly though, at this point, I am having trouble not looking at the much more normal calendar that existed in my head 2 years ago today, as opposed to now when most of my mental calendar is full of "get well". I know that I am so fortunate to have income to support me while I go through this and that I can go through it when not everyone is as blessed. However it still feels like "feel better" shouldn't be the hardest thing I have ever done.

And so begins blogging, the 7th year.

Exhausted

2012-01-14T17:00:00.001-05:00

Last night I was up crying until 3. Then I had nightmares for many hours. I'm completely exhausted. No blogs today. Maybe tomorrow.

Empty life

2012-01-14T00:50:00.001-05:00

So I sort of forgot my stupid birthday. Dr. Mind mentioned it and I thought I was fine. And in a way I am. But my issue with my birthday is that in the past a lot of hard things have happened on or the day before my birthday. I have cried on my birthdays more than anyone should. And this all cemented when I had a period of several (5?) years in a row that all had something substantially bad on those 2 days.

Tomorrow is the day before my birthday. Sunday, obviousky is my birthday. Please don't say happy birthday because I don't like it that much. I couldn't care less about aging but every year old memories greet me. Because Dr. Mind worked exceedingly hard at this for a few years, like as in we worked on it for two months each time before it came around. This made it not so painful but far from my favorite day. This year I assumed I could manage and that I did not really care very much. We only talked of this for about 3 minutes before the end of the session. I truly thought I was fine.

I didn't count on the current feeling that everything that can go wrong seems to and that I am looking at my birthday more as a good time for something else to go wrong and a time that I have to force myself to not reflect on the last year because 35 sucked. It just did. And 36, while I sincerely hope that it is an easier year is bound to have some seriously painful moments. It already has.

And I can't explain this, (confidentiality promises are innate in the class I am taking), but looking around last night I did not see anyone who I thought was going to be my new best friend. There was nothing anyone said that I really clicked with. I actually wound up thinking "well, I don't belong, these people are too sick" or "desperate for help to the point they aren't listening to what we're asked to say" but me? I was the one knitting because she's incapable of sitting still. From what I picked up I'm probably the most recently released for a hospital and also possibly most likely to be fighting serious suicidal desires. I don't know who I am or where I fit anymore and for so long I got used to being able to do so much that I shouldn't have. A lot of my identity was wrapped in up the notion I was succeeding against the odds. I knew that Drs. Brain and Mind had more to do with this than I did at times, but going from developing the home health agency's OT program (did you know I did that? I did. I was the first OT so how things work and the education that the staff have been given came from me) to starting to say this week when people asked me about work in a couple ways that I am not working and am on disability. Starting to say that is probably a good start. Both times though I was totally aware of my sad, sad voice. One of the people teaching the class is someone I've professionally interacted with a number of times. In fact I think she's peripherally mentioned on this blog in a professional capacity. I talked to her about it and then said I was not working. She said the same in just as sad voice. It is so hard. Without being an OT, without succeeding against odds, my identity is kind of unknown. I've said numerous times to Dr. Mind and probably on here that the entire suicidal episode made me have no idea who I am because the real me wouldn't have done any of what I did and would in fact have been running to Dr. Mind for help. But the loss of who I am is even more clear as I try to face that so many of the things that I thought made me who I am are gone. I'm Aunt Jen, but I'm too sick to spend time with my niece. I'm a Christian without much interaction with churches or the Bible aside from what Michal brings to me. I'm still an OT but I'm also not an OT. I remember asking a patient who was quite moody and I was trying to build rapport "So how long were you a nurse?" She snapped at me that she still WAS a nurse. At the time I kind of thought "whatever, you know exactly what I meant and you are retired now". And now I totally understand not wanting to give up that part of who someone is. The person I was a year ago would not need to be in that class. That's the thing that I left with that was so obvious. I was still bipolar a year ago and I still had a severe form of the illness. But I was NOT severely ill. Now I am and now I am very confused about who 36 year old me is as opposed to 34 year old me (35 psychiatrically was not bad but 34 was the year I thrived. And I think I thought for a long time that 35 might have been tough but that I was getting my asthma under control and the surgery was going to fix the other problems I had and by the time I turned 36 the nasty year of bad health would be over and I would be back to being the real me, the one not so sick. And instead I'll turn 36 in 24 hours and the rest of my life kind of stretches out in a frighteningly blank stretch. I've never had a birthday that I can remember (I probably didn't have huge goals when I turned 1) that I had no idea at all what my life would be like in 12 more months. I have had the wrong picture before, I've had things go much worse or much better than I would have guessed, but always there's been something on the horizon. Now I know only that the goal is to get me to stabilize and that's my future, trying to get there.

This hurts enough I'm crying. I've been terrified to cry, especially without Dr. Mind or Brain. But I hate this. It's scary and it sad. It is so sad. I fought so hard to work. I am not saying it was always wise, it wasn't. But a huge chunk of me has been lopped off and it's not overly likely that I'll get that chunk back. And an empty life is I think what I wanted so badly to avoid with the suicidal stuff if it is put in a nutshell.

Well, Dr. Mind wanted me to write......I guess I did.

Sad

2012-01-13T19:32:00.001-05:00

I am so sad today. I have no clue why. It's been a harder week so maybe that's part of it. Maybe it is the snow and freezing wind (which feels as bad as the coldest I've ever experienced, which was -20 and locked myself out of my house with wet, shoulder length thick hair back in grad school. Did I mention that when I did this my car was running and I was locked out of it too? I went out to let the car run while I dried my hair and brushed my teeth every day. Since I lived in a city I always left one set of keys in the car while it ran and then when I was ready to go I brought out another set of keys. That day when I went out I automatically locked the house door and didn't realize it until I'd already locked the keys in the car. It was so cold that day that I started it a little early so I wouldn't be late for clinicals, then while I was finding an awake neighbor to ask for help at 6:30 AM (I had to call AAA to unlock the car; there were housekeys on the same ring) and then since I was clearly going to be late I called in, only to discover the message I had missed while outside that the school was closed due to the dangerous temperatures.

I did go up to the post office. No package. Hopefully I'll make it in tomorrow.

I think that my mood is affected by anxiety. However I only am allowed one anxiety pill per day and I keep putting off taking it until night because that's when the worst panic attacks are. I'm not even taking them nightly which I probably should when one is still available. It's hard because the hospital pulled me off anxiety meds totally (first they tried changing klonopin to ativan which didn't work so they took them away). While I understand why, that until I'm further out from my suicidal days having much of the medication I was most focused on and which is the only dangerous med that could be taken from me (conveniently the other truly dangerous one is lithium which I'm not about to overdose on--Dr. Mind is able to keep me from having these anyway. He doesn't actually count what I'm doing or even really watch me anymore but it's pretty clear that I am to behave responsibly with meds in his office; I think not doing so would be an even greater violation of trust than anything else I've done lately.

Sometimes I think I'm sad on these days just because I know that I was incredibly stupid and broke so many promises that I've made many times over the years. Yet the people who I promised are being kind to me instead of yelling at me and I think it would be easier if they were mad. I can't believe the series of decisions I made that were dumb and everything I've been taught not to do without seeking help. I feel so frustrated with how many backward steps I've taken even after I corrected the first mistake. This whole last 5 days has been rough. I did go to the post office and had a brief conversation there so I met the requirement of doing that today, yesterday, and Monday. Tomorrow or Sunday I'll be going out with my mom for a while to celebrate my birthday so I'll hit 4 times which is the goal. But I do not feel happy. I guess nobody said I had to, but I'm just frustrated with myself.

Partly that is for the dumbest reason ever--I'm really disturbed by the inability to maintain eye contact. Like disturbed enough that I need to talk to Dr. Mind about it and hopefully he'll tell me I've done this every time I've been really sick and I don't remember it.

It was a very, very hard won achievement for me to do that. Hard enough that during therapy school we'd have personal goals with these mini-projects we did and that worked so well that they carried it over to most of our other classes. A classmate suggested I work on that and it was really an achievement of my entire grad school class because everyone helped me with it. We had one class that we would be given one of 2 theories of OT to learn every week. In that week we were responsible for learning everything possible about it and then in the seminar we divided into 2 teams to debate and discuss the 2 theories paired for that week. I absolutely loved the class. It was the best of most academic talents that I had and because I used to have until I got sick a pretty much photographic memory it was a chance for me to excel because I would read the theory and every research article I could find and memorize all this so everyone would have these huge stacks of articles and I had a few note cards. It was fun for that talent to actually have a purpose, and I really liked turning the information around in my head and finding good and bad things. I remember the day that this girl who aggressively tried to be the highest score in every class, even one like this that was basically pass/fail up until one paper at the end that was pretty hard to fail since it was called "My theory of OT", but anyway, I remember one debate getting intense and everyone made a big deal because while we were debating back and forth I maintained eye contact the whole time.

In 2007 vocational rehabilitation did an OT evaluation of me. The end result of that was that I learned that my eye contact lessons had paid off as I made better eye contact than anyone else with severe bipolar the evaluator had ever seen. With Dr. Mind it is also something that was hard won; I remember about 6 months into seeing him he stopped a conversation mid-sentence to ask if I knew I'd been looking him in the face for 10 minutes and what had changed? I was so proud of that. And while I've often not looked at him much when dealing with something hard it's been 6 years since I couldn't maintain eye contact at least some.

I am just not comfortable with who I am right now. Which really isn't necessarily bad since getting comfortable with a very symptomatic me would not be helpful. But it is somehow symbolic of how wrong things are just now and I really hate it. I also hate the reminder that I'm probably not doing this because I'm embarrassed. And because of what it was it's not like we can just agree to move on and forget what happened.

Anyway, this is a weird post and I don't really have a good reason for feeling sad, I just do.

Secrets

2012-01-13T15:02:00.000-05:00

For the time being I would say it is unlikely I'll be posting on Thursdays. That's a long day! I see Dr. Mind at 1 and my class is from 6-8. Dr. Mind suggested that I move his appt. to a later time but for now I want to see if I can do this.

Yesterday Dr. Mind and I talked a good bit about feeling safe. I don't. He was matter-of-fact. I've been in this place before and we've fixed it, etc. Fine, but it's never been the reason I'm scared now. I left knowing the bottom line is that I do not trust myself. In the past I have not trusted crying or anger or some emotion. This time it is me that I don't trust. So we're both right. I did not leave feeling we'd fixed anything or that I'd provided an information he did not know. Yesterday was grab needed meds day. Since he has to give me the key to do that he has been getting an education on how many pills I take each day. He's rather amazed. The funny thing is that he's not even seeing nearly all of them because I have a few harmless meds at home. I still can't make eye contact and hold it. I hate that. I also can't talk loud enough. Dr. Mind has hearing loss and has to keep moving closer to me. I sound very critical of myself there; these are just things I've worked so hard on and not being able to do them is frustrating. There was one somewhat funny moment when he said something about my birthday being soon, how was I feeling about that. I answered something and he thought a minute and told me I am the only person he treats whose birthday he knows. So I'm special (actually I have birthday trauma that we worked very hard on for 2-3 years which is where that started. Plus my birthday is pretty easy to remember as it is Martin Luther King day (the actual date, not the day off work for some places) and it is also 3 weeks after Christmas exactly. So there are more tricks to remembering than many birthdays. It still is funny. Especially since I think he said that because I was surprised he remembered since this year I really don't care.

The class...not sure what to say. It sounds like some of the content is going to be very helpful and some I will know. It sounded like 50-50 or so. Yesterday was much more impressions of people and I can't say anything about that. I wound up needing to knit through a lot of it to keep my fingers busy and me in my seat. They were fine with that; I explained briefly that I'm off anxiety meds and am not sitting still just yet. Dr. Mind is going to have an interesting take on one thing; they go out to a nearby coffee place after class after the first week. While I know going would be good for me I really don't want to not get home until 10 as it keeps me awake. Also coffee places frustrate me because I don't/can't drink coffee and the price for a cup of tea at this place is ridiculous. So hopefully he won't make me do that part. If it were summer it would be one thing but it is decidedly not summer (we have our first real, albeit late, snow fall, along with wind that is making it quite chilly today. I hate to turn up the thermostat because I was freezing when I woke up. I made it to just outside my town before it started, so that part was good).

I still haven't heard anything from work about my inability to return for many months. I was not very specific, just that once I stabilize it will still be many months before I can return. I did not say it may take 6 months or more to stabilize, then 6-12 months to meet the requirements. I said it how Dr. Brain told me too, in a way that should have let them know things are seriously wrong but without being at all specific about that.

I need to go to the post office. I am anxiously awaiting a package. And I just reminded myself it will be closed Monday and tomorrow I don't know if I'll make it out. I hope I'll finally get it together to get my blood drawn. I keep trying and failing because of not sleeping well, forgetting what time I took the meds when I shifted the lithium to later to make the blood draw easier, etc. I was disappointed last night because at first it seemed I would fall asleep earlier than I've been doing lately (the insomnia is acting up although once I get to sleep I do get 8-9 hours) and then suddenly I was wide awake again. And that kept me up so late that there was no way I was going to get up in time for the stupid blood draw. It will happen. It may give Dr. Mind a stroke first, but he does understand my problem. One advantage to the weird way the hospital dr. did it was that the levels were drawn at 4 pm. The problem is that this number is meaningless in the context of years of 12 hour draws which make up our knowledge of how I usually respond.

Anyway, must go to the post office. At this rate they'll be closed when I get there. I really don't want to go out in the snow and wind. Waahhh!:)

Hard work

2012-01-11T23:04:00.004-05:00

I have a memory foam mattress. The one I have has a cover and kind of a pillowtop that make it look like a regular mattress (and decreases the extra heat from the foam as well as providing more support. It was starting to be less comfortable and so I contacted the company and they said that it could be flipped and then the pillow top zipped onto the other side of the mattress and that this would make it more firm). (The problem comes from sleeping alone; when the mattress is only turned and not flipped this means that some parts never get used and the parts that did get used were getting uncomfortable). It took me 2 hours, including rest breaks. Turns out that after removing all sheets, blankets, both mattress covers (one for allergies, one water proof) and then unzipping the pillowtop part that they didn't mention the part where the mattress is encased in what looks like the outside of a mattress and that flipping it means you have to put that part back on and that this is not easy. The mattress is quite heavy and I thought that would be the hardest part but it wasn't, it was lining things up. I also thought zipping the pillowtop on would be tricky and that was possibly the easiest part. The hardest part by far was getting the mattress aligned in the casing. Lots of lifting, pulling, balancing things on my head (only did that once since I nearly was knocked over). I think it feels better but it's hard to tell for sure yet. It did look like the bottom doesn't have the same few inches of higher density foam that the top does but I think those were something I got that was optional. I also have to get a new allergen cover at minimum as neither cover will zip anymore.

I also was shocked to discover how much damage a single straight pin that had gotten into the mattress cover somehow (weird since there has always been 1-2 mattress covers on this mattress).

I sincerely hope this tired me sufficiently to give me a break from insomnia. Right now it seems it may. I hope.......

In reply

2012-01-11T20:14:00.001-05:00

Michal asked another good question more than 1 person may wonder about. So here's the question and answer:

Why do you say you'll never be free from precautions? You suspect that you're the "sickest" patient at this time but you seem to be stabilizing at an amazing rate. I'm not into "speed" or trying to deny serious concerns but I see growth already.

I was exaggerating. But it's important to also know this is a 2 steps forward, 1, 2, or 3 steps back thing. I took a big step backwards yesterday with the (fully expected) return of the non-dangerous but still shouldn't have them thoughts of not wanting to live. Since I have to prove that I'm stable and safe and can maintain that it just is going to be a long time before I have everything back. Which is fine. What happens is that between brain chemistry and illness and stress every so often my brain takes a big step backwards into wanting to shut down or die territory. It's how getting over this works, but the last few days have been harder. Some, a lot, of that is that talking to Dr. Mind is going to be tough tomorrow and my brain chemistry has gotten used to the answer to I'm upset being I want to die. I have a feeling that they'll make me handle a major stressor before they feel I'm truly safe. Because I've dealt with so much for so long without becoming the way I've been the last while it will take even more time to show I'm fairly stable again and that my brain has found a new default.

don't you think it's possible that one day you could work part-time? It's probably way too soon to think about that but on the other hand, you might need that hope.

Working part-time and my disability insurance don't mesh. So unless I get so well that everyone feels that I am unlikely to need disability again for many years if ever and that I'm well enough to work full-time (for income as well as benefits) I can't go back. On SSDI you can work a little bit but I have private disability insurance that doesn't allow that. Even if I do go back to work it is unlikely that I will try OT again. I don't think there are any jobs that are not stressful (part of the problem with working is that we have to know I can handle stress without going backwards) but because of the shortage of OTs in this state it is pretty difficult to not wind up overdoing it. If I were to say I can work 8 hours/week it would nearly certainly turn into more than that and I would be totally stressed about sticking to less than disability would allow because the patient needs are always so enormous.

Right now I am actually feeling better focusing on NOT going back. I still may although the requirement to do so is pretty hefty, but right now I can't think about taking on more than this minimal life. The last few days I've not managed to leave home or go outside. I'm tired. I have done some cleaning/organizing and in a minute I'm going to remove sheets, blankets, allergen cover, waterproof cover and mattress top from my mattress, flip it, put all those things back on (it's memory foam and hopefully have a more comfortable bed. But I haven't managed to push myself to even get mail because I haven't been sleeping and even that 1 part of the system is able to mess up the rest of it. There are so many pieces to work that I find the idea overwhelming. That's hard to admit, but at this moment that's the feeling. I also know that if the people treating me think this is likely it truly is because they've never given up on my ability to work before and now nobody is sure where this is heading aside from not a great place.

Don't worry, I'm not upset. I needed to think about that to clarify my current position. I actually am probably making myself shoot lower than I hope for just to decrease the risk of being hurt if things don't work out. It's been so long since I felt ok that it's hard to believe that will ever come again. It's not impossible but the cost to me may remain too high. Or not. Mostly the plan to to prevent suicidal thinking and go from there.

More quotes

2012-01-11T13:36:00.000-05:00

A young woman who I babysat years ago when she was a toddler (now in college) posted this on facebook today. I am trying to remember it when I feel sad about my working situation.

“To know even one life has breathed easier because you have lived - that is to have succeeded” -R. W. Emerson

I have done that. I may be stopping earlier than I hoped but since I have to stop thinking of that as failing I think I will try to focus on this.

I also have another quote from me, written just about a year ago:

In fact he {Dr. Mind} told me the other day that I'm no longer his most acutely ill pt. I think this is supposed to be a good thing and all I can think is after 5 years???

I have a funny feeling I'm the sickest again and I bet not only have I reclaimed my title months ago I'd also bet that I will be holding on to it for a long time. I was grumbling about hating not having access to my meds and said that I did realize that the fact I was feeling annoyed by our arrangement was a sign I was improving. I also thanked him because it feels awkward to fill pills with him but it is WAY better than if my mother were involved. He really is annoyed at her, I can tell this because that was what he wanted initially and I begged him to just keep the keys for me so I didn't have to involve her. Now he even commented that she'd be likely to be obnoxious about it and lecture me. Glad he came around to this. But I still apparently am far from being trusted since my grumbling led to "No sympathy" said cheerfully. I am never going to get free of these precautions. My own fault and truthfully I'm glad to have them but it is not fun to have to remember that I need to get meds out and to do that with an audience.

Oh well.

I am titleless

2012-01-09T19:57:00.002-05:00

Sometimes I think titles are the hardest part of blogging......

I am...something...tonight. I saw Dr. Mind. We laughed at my medication traveling kit (he has the key to a locked box that any unsafe med lives in. I am carrying this back and forth as needed with add or retrieve pills. It is annoying but he says he doesn't care if I'm annoyed. So we continue, noting my feeling comfortable enough to not be annoyed is positive.

Today was the first day he really has pushed at me much since I got home. I know that it is good that he feels it's ok to not be extremely gentle but I did not realize until after I left that I am terrified of feeling much of anything. Because handwriting things was very helpful in the hospital he's been trying to get me to do more of it. I told him today that I am afraid of that because it brought so much out that doesn't yet feel safe. So we talked a little about how so much that has happened in the last year feels like a sad ending and we talked about my prediction in 2006 plus the story about being told that 2 years was impressively long to work with my severity/type of bipolar. So 11 years is more than I should have had, statistically. And for the first time we talked for a bit about my regrets about some things. We talked for a minute about my fear of being hospitalized again. And we went through a few hard, pointed questions, about suicidal thoughts (every time we do this, I am getting more used to it). This time he pulled out the other question I'm going to grow to HATE: What am I not telling him? I truly can't think of anything and he seems ok with that. But the effect was to make me feel when I let and realized I had be very wrong about something that I might have lied, something I am very aware of right now after the lying that I did. But what I did was just say what I thought and then realized I was wrong later, which I am allowed to do. When I told him why I don't want to let myself get upset I initially said that it wasn't that I was scared if I felt sad or upset that I would return to the scary place I was in 3 weeks ago. But that is exactly it. I am afraid to face the sadness about the changes in my life because I am afraid of what happens if I do. This means, of course, that I need to do that with him and that I very much need to feel those things, but I am terrified what could happen. The last time I took a hard look into what I can and can't do was pretty unpleasant. I'm terrified to look harder or to try to figure out how I really feel alone, and doing it with him is hard too. We tried today. When I cried he moved on shortly after. Next time I'll tell him I was wrong and I do not feel safe looking at things that hurt. I need seriously huge amounts of handholding right now. I know that it is normal enough to be afraid after what I just came through,. It just is really hard to test my coping skills right now. I have had some bad times when I needed a lot of help to cope but it's never been quite like this.

I truly hate feeling so fragile. I see a pale, sad face when I look in the mirror still. I look like I have been through a lot. I have been. I just haven't yet figured out how to process and start living with everything. I don't know how to trust myself anymore. I really scared myself because I was one impulsive moment from something really bad happening, as well as one moment of deciding that was it not impulsively. I keep thinking of what Dr. Mind told me when I had just gotten out of the hospital, that if I choose to hurt myself there is nothing he can do. He can make it harder but he can't prevent it. Which just makes me more afraid because it is true and so I do not want to risk feeling like that. I think I've got a better means to handle it even if being sad is as risky as it feels. I know that I have made decisions about living versus dying and that it is different now because I have help with that because I got around to asking for it. Nonetheless, feeling sad or crying or feeling any of the other hard things that go with my new understanding of my situation terrify me.

So we'll be taking a huge step backwards apparently and relearning that being sad doesn't mean being suicidal and that I do have a safe way to manage these things, I just need to use it.

And actually I think the step backwards is already happening. I am not able to maintain eye contact. I can't with either doctor. I haven't shut off feelings for years because I've trusted Dr. Mind to help me handle what felt awkward. It's been only a few weeks since I went into complete shut-down mode. It does not help that it feels like that was a lot longer than a few weeks ago.

Anyway, it is hard. I am now exhausted because of how hard it was. And the next one will be hard too because we have to talk about this.

Looking back

2012-01-08T19:05:00.000-05:00

When I included that little story about Dr. Mind the other day I had totally forgotten that when I first blogged I kept it so removed from my life. I had been blogging nearly 9 months when I said I was some kind of therapist. I also didn't talk about what happened with my doctors, especially not in therapy because I was scared someone would stumble into that. At the point that was written I hadn't even created nicknames. I was trying to see when I did create nicknames when I found a posting marking 4 years of official diagnosis. I am very aware that this year I will be at 10 years since diagnosis. What I had forgotten was one of the ways to know how amazing my years of working were for me to have achieved that. For someone who has never heard this story after realizing that I was more than likely bipolar and having this confirmed by a therapist who'd never actually treated someone with severe bipolar I wound up discovering that Case Western Reserve University has a mood disorder clinic that was headed by a man considered to be a world expert in bipolar (Dr. Calabrese). Because of the severity of my symptoms they jumped me over the waiting list (they wanted to hospitalize me to start but back then Ohio did not have a mental health parity law and I had no insurance coverage for psychiatric hospitalizations and a $4000 deductible before they'd pay for any mental health treatment). You had to have someone who could verify your symptoms so my so-called best friend (who in just a few months would be the so-called-friend-who-decided-bipolar-made-me-not-a-Christian) came with me. Thankfully they had her sit kind of behind me and verify mainly with nods so I really never knew what she told them. Hindsight says probably not the best choice of "friends" but it worked.

Anyway during these next months there is something I had forgotten that helps a little (at least right now it does). That little thing is that I made it much further than I should have. I had forgotten because I took working for granted and it is wonderful that I could do this. So the Sept. 2006 story of Sept. 9, 2002.

The evaluation itself was exhausting. That's mainly what I remember, how tired my brain was at the end. He asked questions about everything in my entire life and how I did things, reacted to things, approached projects, etc. He walked back through my life year by year to find when I truly first had symptoms. He started predicting the patterns that identified the variations of bipolar that I had. That amazed me; he could ask "do you do this?" and then tell me that I also did this and this but not this.

At the end he did something that I have remembered a million times when I have been most frustrated. He asked me how I had done so well for so long. I had gone far beyond when I statistically should have been clearly diagnosable, and I had avoided pitfalls I was statistically extremely likely to land in. At that point it was amazing I had maintained a job for 2 years. What he didn't know was that I hadn't even missed a day of work due to bipolar symptoms yet and I wouldn't for another 5 months. That made me feel so good, like at least if I had to have this at least I wasn't totally handling it horribly.

Even with that comment in 2002 it wasn't until 2004 that I was on disability and that was simply 6 weeks for treatment of akasthesia and vision problems as a side effect of Abilify. I made it to 2006 until my first real disability and even then worked 5 years after I went back. It seems less horrible in these terms. I did what I shouldn't have been able to. The current changes stink but they could have come a lot sooner.

This is very weird. Also in Sept. 2006 I wrote:

I seriously doubt that I'm going to be able to do this for a tremendously long time. I'm arbitrarily picking 5 years as a point that I hope I still will be working.

And Aug. 6, 2011 seems to have been my last day (at a minimum for a very long time). Self-fulling prophecy that I did not remember? One very good guess? Again I totally had forgotten that and in the last few years had come to believe that I could have a normal career. Compared to how hard working used to be this was reasonable. But bipolar is ugly and I forgot that just because I well for a long time that did not mean the future would stay that way. All we could could do is hope and I suppose I took that further than was best for me.

This has been interesting. I had actually forgotten that I felt a significant decline in 2006 and that I struggled for over a year to adjust to a decline in my functional skills along with having very few med choices left. Sound familiar? I wrote this in 2007:

This week is when I'm going to start my new psychological adventure. It is time, I believe, to begin to determine how to not put myself in the same position I did this last time. I made myself miserable for a long time by insisting on believing that "better" meant back to the way I was, the way I knew myself. Instead, when I finally gave up and accepted that I lost ground that was permanent, I was feeling better (in new ways) in a matter of weeks

I could have written that today. The difference is what I was losing. However, even some of the same issues I was dealing with then are still in place, mostly that there are 2 meds left that I haven't tried and am not allergic by default or are contraindicated with something else I take: Zyprexa and Clozaril.

Here's another one from 2007.

I saw my therapist tonight. He was pretty happy with how I'm doing. I've actually come to an acceptance of my current limitations over the past few weeks, and that really is working. He told me this is one of the days he got a glimpse of what I would probably be like without this disease. That, of course, is very good. It turns out that not fighting how I feel is maybe even letting me feel better, because it wastes less energy. It also is encouraging me to take it slowly, which is simply not my usual style. I'm trying so hard to follow my body's lead this time, and it is just possible that if I had done this sooner like everyone encouraged I might have suffered a bit less

Somehow I don't think that conversation would happen again. I think he got to know me without symptoms. And now that is gone. I was adjusting to my illness progressing at the time this was written but there was no way to know that 2 years from them I'd actually start feeling normal much of the time for nearly 2 years. This time though I know that it was obvious to everyone else before it was to me that I needed to be off work indefinitely and my reaction to that was terrible as I tried to adjust to it and I have fought kicking and screaming against what was happening for months until I finally gave it and decided to try to live this way even though it's hard to consider.I think that now that the time I was being prepared for a few years ago happened for real everyone had started to think it was not going to happen and that I'd keep avoiding the end of who and what I wanted to be. I am glad that I have been back through this though because it helps to know that this did not just happen, that it was a very long process and I now have a reminder that while I'm sad about the ending I made it nearly 11 years which is amazing.

I need to change my sheets. I really hope I'm right and there's a clean set in the closet because I really don't want to have to do laundry tonight. Tonight's wild plans include clean sheets, a shower, feeding my worms, a bit more watching a movie, gathering laundry to wash tomorrow and bed. And this post is way too long. So good night.

Appointment

2012-01-07T20:57:00.001-05:00

I saw Dr. Brain today. I laughed a few times. This is good. Nothing huge. I did get some medication for anxiety but will be using as needed instead of on a schedule like before. I'm just glad to have some available. I am to log my lithium symptoms. The log has begun with ugly headache of the day which has me lying in the dark typing. The computer screen isn't too much light but the lights are. Tylenol didn't do anything. Hopefully the next dose in about an hour will. In the hospital one of these lasted 24 hours. We talked about the future. At this point she says I need to be stable for 6-12 months before we talk about working in any capacity. She did agree that I can talk to the surgeon about the ankle repair I need to have done. The lithium makes me clumsy with 1 fall and 1 almost fall in just the last 10 days. And if I would wind up working again I wouldn't want to be off for some time for surgery. However the only way I will consider surgery is if he can do it with a nerve block. I will not have general anesthesia for something elective. If he can't do the block I'll just keep wearing a brace. I sent an email to work which was painful. I hate this; it feels like I've not be responsible in getting back to work. I know that's not true and that I've done everything I can but I am still amazed that not a big deal surgery somehow led to this. It was supposed to only be 2 weeks off post-op. Now it will be a minimum of a year and that's if I stabilize today.

She did tell me that the NAMI class I'm taking varies with the leader but can be extremely helpful for experienced patients along with new ones. Hopefully I'll get a good leader.

My cat is going to have to take anxiety meds. I was only gone for 6 hours today and she'd pulled more hair off and caused a new blister in a different place than the first 2. I've been trying to not be gone for too long at a time to help her see that I do come back but this has limited effectiveness. So I'll have to medicate her before I am gone for long.

Ugh, my head is killing me. I think I'm going to get some meds working and take my tylenol a touch early. I'm at 6 hours now for this one. I think of any lithium issue these headaches are the worst. They are just short of being migraines and I've had easier migraines than the headache in the hospital.

It still amazes me how much of an impact being in the real world for long has right now.

Normal

2012-01-06T22:05:00.002-05:00

B. just, like I'm probably stalking her just, made me smile. And since smiles are apparently still pretty rare I thought I'd share this one. All it takes is the phrase "new normal".

The first year that Dr. Mind treated me we had a few disputes. Ok, a number of disputes. One that we've discussed many times since was the time he absolutely left me horrified.

I had spent years pushing and struggling to appear entirely normal. The end result was a mess with work where they had no clue that when I started saying that doing my job and my assistant's job after she was fired (which meant working 60 hours per week plus a 75-90 minute commute; seems that has been my fate to lose things over driving distance) was too much. And eventually this put me on disability for about 4 months. That along with lithium toxicity, the stress of changing therapists from one who didn't hold me accountable to Dr. Mind who does, stomach ulcers, and some other things. And during those months I worked very hard with Dr. Mind. It was the period of time in my life that at 30 or 31 years old I learned to cry. Kind of, since mainly I cry with Dr. Mind and rarely otherwise, like rarely enough I'm not sure Dr. Brain had ever seen me sob until last week and she's treated me for much longer. It was the first time anyone pushed me to talking about and dealing with some of the losses related to working. It was also the first time I wasn't sure and nobody would promise that I was going to succeed at work when I returned. So I had 2 or 3 months that were very hard and then a few weeks that were more about adjusting gradually to the changes in how I saw myself. Until that time I had never thought of myself as disabled or that I wouldn't always manage. So soon before I was to go back to work I said something about being able to be normal again. Dr. Mind stopped me and said no, that I needed to stop thinking of how to be normal and start thinking that I was living and managing but accomodating my disability. I was just learning to look him in the face while we talked. Anyway, we went through a number of sessions talking about my desire to be normal and how that had to change to a desire to live the best I could because I was putting too much pressure on myself trying to be things I couldn't. Since then he's brought it up every so often, partly because it has born repition and revision, and partly because the face I made was apparently rather memorable. Here's what I wrote the day it happened:

This blog is the only place in my whole life where I publicly say "I'm Just Me and I'm bipolar and I have some ugly symptoms, I do weird things to cope, and either you accept that or you can leave". As may be obvious, otherwise I pretty much hide. I tell close co-workers a little bit. For all the years I've been diagnosed and the years before that when I should have been, I've spent most of my time pushing very, very hard to seem absolutely normal. Over the last year or so this has worked less and less well, but I've never done anything else so I've continued. Ultimately it got me in trouble because I refused to say that I couldn't do something because I knew that if I did not have bipolar disorder I would be able to do it. Therefore I used up every ounce of energy I had, and kept working long past when a sensible person would have said no more. So I have spent a lot of this summer fighting with the fact that I'm sick and this means I can't do everything I want to, or even need to, do and that I have to quit fighting this.

So today I was sitting there curled up in my chair as per usual talking about returning to work in SIX DAYS and how I was scared that I would not be able to seem ok. I thought that "ok" was a reasonable place to aim for (it's less than normal, after all), but the psychologist told me that's not it. He told me I'm not ok in terms of being able to do the same things everyone else does, and I need to focus on doing what I can do, not on what some standard I'm setting is. Or something like that. But I reacted much like he had slapped me; I was really startled by this concept put quite that bluntly. I have no idea how to not push as hard as I can; it's not just my coping technique, it's my personality.

Ever since then he has pointed out to me when I was dealing with "normal" issues. In the nearly 2 years that my meds were exactly what I needed he would frequently tell me when work was hard or I was tired of dealing with people that I had wanted normal so badly and that I was living a normal life. Generally I'd wind up smiling and admitting that this was true. Unfortunately I think during some of that "normal" time I was starting to get sicker and it was masked by the physical problems. I have no way to know when my mood started to get messed up. I think that it was around when I went back to work after my vacation in June. The end of June is when I started to have constant pain and I know that by July I was having panic attacks, including one severe enough to require a phone call to Dr. Brain.

But anyway, the point is that normal was a goal for me, one that I achieved. I had about 18 months that I was able to say my problems were normal. It was a nice gift that certainly didn't seem likely. I don't think I want a new normal yet. I'm still grieving the loss of the only time I ever had normal. Losing what even Dr. Mind thought I would never gain is part of what hurts the most; the last 2 years were bonus time for me and going from better than anyone dreamed I'd be to long-term or permanent disability is really rough. I don't want to ever get myself so attached to an idea when so much can change so quickly.

Normal for me is probably never going to be normal normal again, making it something I need to stop thinking about having. One lesson, learned twice.

Let's see....

2012-01-06T18:01:00.000-05:00

Becky left a comment that she's probably not alone in the questions she is asking. So I thought I'd answer here.

I read your post and all I can think of is the word "relief". As a mother hen type, I am SO SO glad to know you are not going to be rushing back to work, and that you will now afford yourself the gift of time to heal and get better.

Deciding this has been hard, which is why it helped a great deal that Dr. Brain told me while I was still in the hospital that she did not want me to return for at least 3-6 months but since she kept saying June at the earliest she meant 6 months. She also talked to me then a bit about being off longer. It seems everyone who treats me is in agreement here. This was hard because my doctors took the suicidal stuff a lot more seriously than the hospital team. The hospital people took it seriously and made sure I was very safe but when you are one of 6 or 8 suicidal people it's rather hard for them to be as surprised as the people who know me well and know that I have fought off what is called passive suicidal thinking (wishing you could just die) many times and more serious active thoughts several times and I have never had a plan or intent. This happening I think shows nothing but how much worse things are right now. What is hardest for me is accepting that a major change has happened. Some of it physical as it is likely my brain chemistry has reached a new level of messed up. It wasn't just accepting that I was not going back to work that I struggled with in the hospital, it was knowing that this is really happening. There was so long I assumed I'd get better simply because I always have, even against the odds several times. Knowing that it is time to accept that this time things aren't going back to normal has been very strange. I've tried to fight this so hard that nobody wanted to sit me down and say enough. Apparently everyone treating me has thought this and it seems were a bit afraid of bringing it up. If Dr. Mind was thinking this several months ago then it must have been pretty clear for a long time because I know that none of my doctors would think of or bring up this idea unless they were sure and he was asking Dr. Brain what she thought then. And my acceptance of it all has a great deal to do with knowing that this is the long-term insurance that I need to be using if there is a question of my not being able to work as this insurance lets me keep my house, car, etc.

I know what a strong (HUGE) work ethic you have. I saw too how you always pushed through, and did a good job, no matter what was going on. I've also seen you so very stressed about their opinion of you, sick days, scheduling, and wondering if you had a job to come back to. Working 40-50-60 hour weeks is hard on anyone, let alone you who have gone through an INCREDIBLE year(+) of horrible. Is it not a bit of relief to not need to worry and stress about it now? Isn't it a relief to get yourself back on a decent sleep schedule without worrying about getting up for/being rested enoug for work?

Yes it is a relief. We'll see what Dr. Brain says tomorrow but as I said my impression from her is that she is in absolutely no hurry to send me back. Everyone agrees completely that I cannot do the job I've had. What they don't know is that the changes to Medicare mean doing that job was getting harder and would be extremely difficult even with the level of function I had in the spring. And I'm tired of some of it. I'm so tired of things like a patient complaining about me a year after whatever her complaint was occurred, making me unable to prove that I am pretty sure she had me mixed up with someone else because I don't remember anything about any issues with her visits and I only saw her maybe 4 times. I truly believe she had me confused with someone else but I can't prove it. I also am tired of constantly having to call doctors offices, of the enormous amount of documentation required to practice now, and these additional medicare required assessments that are essentially an eval. Truthfully there just wasn't a point that I was getting enough rest after some point last spring. Since those repeated full evaluations/justification of treatments started in April I think it's a pretty good sign that those were the last straw.

Today our city hit a record high of 50-some degrees so I took advantage of the weather and did some spray painting. While I was out on my deck spraying away, I thought so much about you. The thought that keeps sticking in my head is this NAMI(?) group you may join. You said you hesitated to go because you'll not learn anything new/you could teach it. Likely the reason it was suggested was for the interaction(?) ANYWAY - I was wondering if you are going to the group.

NAMI is the National Alliance for the Mentally Ill. It provides a lot of support and political advocacy for mentally adults and their families. (I think there is actually support for parents of kids with mental illness as well). I am taking the class. It actually was Dr. Mind who told me I'll probably be bored and that I could teach it, but he still wants me to go. So I will. Interaction is the goal and once I've taken this class I can go to a smaller support group.

The 50 degree weather arrived here today. Actually is was closer to 60 than 50. I went for a walk. Not as long as I'd have liked because I was up until 3 last night with a not quite full-blown panic attack. But I did walk up a pretty big hill and then back down it.

And then, I wonder if you may consider this thought: if you go and happen to be very bored with it, think about how YOU would facilitate the class. What information would you share? How would you do it? So now I've switched from mother hen mode to teacher mode. But I can just see you doing something like this IN THE FUTURE (mother hen is back), not now! So, it's maybe something to put in the wayyyyy back of your mind. Maybe.

We'll see. My understanding from having had people talk to us about NAMI in the hospital leaves me unsure that it is going to mesh completely with some of my beliefs. I think that they use a more generalized approach than I think works. However right now I need support anywhere we can find it.

You see, I believe there is a silver lining for you. I believe that you have SO MUCH to offer. I believe that God is working His Plan for you. I believe in you.

Thank you. I know this feels right and I never thought that would happen. Which makes me feel more sure.

Relief. Time to heal - time that you've needed for over a year finally is here! It's such a relief to me. I hope it is for you too!

I will admit to wondering what would have happened if I'd just taken a few weeks off last winter or if I'd had my surgery sooner. But those decisions are past and at this point I'm doing what I can do. Relief is probably stronger than I have managed yet aside from feeling relieved that this horrible decision finally is made, assuming Dr. Brain agrees. While there isn't a lot of doubt this is necessary it is still hard to decide. It does help to know that while the doctors seem to agree that this is time they alway seem willing to support whatever I want. It is good to have this choice. I just wish I had known this would/could happen. I thought after so many years that I was well aware of what my particular disease process was. Being wrong about that is hard as I'd never considered this happening at this stage.

But it has and until I don't get so tired so easily I can't imagine considering anything else. And if/when we know for sure than less stress is good for me it will be hard to know that. But I'm willing to work on accepting that which is huge.

Now I just need to see what Dr. Brain says tomorrow.

strange

2012-01-05T20:10:00.002-05:00

I saw Dr. Mind today. I told him that at some point we'll all need to discuss return to work versus long term disability because I have benefits right now that are extremely good and if they feel I am not going to succeed for a long time we'll need to figure out the benefit versus cost. He asked me where that came from. I told him Dr. Brain had mentioned it in the hospital and that I know that I landed this way partially because working is very hard and stressful and that I don't know that I can return to doing it well or proficiently enough for long enough. I don't think I can manage a more-than-8-hours per day job anymore and I don't think OT is ever going to be less than that for me (partially this is because we have such a shortage of OTs in Ohio making it really hard to have a job doing only 1 position, partly this is because it is nearly impossible for me to document while treating, and partly it is because with any job I have there will be a minimum of 45 minutes of commuting). There's also the issue where my blood sugar levels (more below) make me very nervous about the only 2 back-up meds I have. And there is a point where my lithium levels are likely to be an ongoing issue that may require monitoring very frequently forever as the line between toxic and working is so thin for me and I do not feel bad when it is too high until I am hallucinating which is not ideal. I believe that I've been told that being on lithium will require extensive monitoring long-term, especially now that my level is on the high side (even though I'm on the same dose I've been on for years). And coming down with the level won't be an option for a very long time because lithium is the only drug that is known to improve suicidal thinking. Anyway, there is a lot besides the simple fact that I have been so very sick for so long, sicker than I have been in all the years I've lived with this which is saying a lot, that says I may be better off on disability. I know that. I know how different I feel than I used to feel even at my sickest. Admitting that is part of what required hospitalization, but after saying several times aloud that I think my career has ended at least for now it's easier. And Dr. Brain's approach was to gently suggest that I should know that sometimes people come off of long-term disability as new meds change how they are doing. I think this means she thinks it is time for me to do that.

So we talked about this a bit and I continued to talk about it with my new knowledge and understanding. I think Dr. Mind and I have talked about this a little but very abstractly. After he was sure I knew what I was saying and had thought about this he told me that he brought the idea up to Dr. Brain several months ago. He said she didn't answer then but that he's been concerned about my trying to keep working after all the changes in my condition in the last year or so. It seems he thinks I don't handle stress as well as I used to. Which I don't. It's hard to explain but I seem to be overwhelmed so easily. He said something about we managed to save things 4 years ago when this came up for the first time in earnest rather than as an abstract time in the future. I guess that's true since that was when Seroquel magically worked against the odds. And perhaps I need to hang on to that, I worked 4.5 years longer than seemed likely. And hopefully another med someday will change things. I've had an amazing run that I should never have had thanks mainly to Drs. Brain, Mind, and Body (or Brind if you combine the first 2 as I did). I may feel different later but for right now I know only that the plan is a long period of time off and that I have been through too much in the last year. I think that knowing my history and belief system that if I have reached the point where I was seriously suicidal because it was so hard to face that work was too hard that perhaps working is not just too hard now. I also would like to know that there are med alternatives that do not have a substantial risk of hurting my blood sugar before I try to do something as stressful as work. Lithium and Seroquel have done most to all of what they can do to save me from myself. Seroquel can go up some but not much and lithium is currently maxed out until my levels drop. So I guess I've even made a decision that is very tentative as there is a small chance I'll get much, much better still, but the decision from now on has to be related to "can I do this without damaging my health or becoming suicidal?"

Blood sugar....I heard from Dr. Body. He told me that he wants me to not worry about it, that it may be up due to stress and having been hospitalized and that it probably is still in a safety zone for now. He wants to wait 2 months and then do some bloodwork but there isn't any need to rush or be afraid yet. He knows how sick I've been and basically thinks I need to recover from that and then we'll deal with this if needed which he feels is unlikely. I am so glad for that. Hopefully in 2 months I can start losing weight and will feel better in general. I am so grateful to him for telling me that there is not pressure yet because I really can't deal with this right now. I really don't even care if he would have done more if I hadn't just been through so much because I truly can't imagine trying to handle this yet.

I smiled with Dr. Mind today. I'm getting the impression I haven't done that in the last month or two. It was something completely stupid; basically he skillfully backed me into a corner and I smiled instead of answering because it was skillfully done and I had no answer. It's good to know that I still can smile. It's also sad to realize how little I've smiled in the last few months. We also talked a good bit about what I am doing and not doing and how easily I get to be extremely tired. Apparently that's normal and he's ok with what I'm doing which is a good bit of sleeping and limiting naps after 2 pm. So far my sleep patterns are gradually getting back in place and I'm getting consistent at falling asleep on my own and sleeping 8-10 hours. That is acceptable which is good because when I am sleeping and not having nightmares I am sleeping hard. It takes very little for me to overdo and I still worn out from going to the grocery the other day. It took forever because I didn't think about a list and so I had to go to every aisle, some a few times as I tried to figure out everything I needed. Then yesterday the only thing I really did was make a huge thing of soup but that took the energy I had left.

Anyway, I need to find some supper. I see soup for meal #2 today in my future because nothing that I have frozen sounds very good. Good thing I have a LOT of vegetable soup.

Catching up

2012-01-04T15:07:00.002-05:00

Thanks for the concerned comments/emails. I just haven't had the energy to post. I am fine, just not used to much noise or stress and getting back into life involves both. I just get very tired quickly and have been resting. We had Christmas Monday. It was weird but presents were enjoyed, food was enjoyed and besides getting quite tired and having a few times I had to walk away from my mother because she was telling me what I could and couldn't say which infuriates me, and once from my sister who was doing a variation of the same thing. But aside from those things and my brother struggling with his wife leaving him a year ago exactly and having an argument on the phone with her which made him sad it went well. My niece got to play in snow for the first time.

I finally found out what my mother has REALLY been sniping about. She got it in her head that if I am on disability that she should keep working to be there if I need help. This is not something I had said or thought and certainly don't want or expect her to do.

Yesterday I saw Dr. Mind. He convinced me to take a class though NAMI. I was hesitant to sign up for it because it is more for people knew at this and I'm not. I'm new at getting as sick as I did, but not at the whole thing. He said I need to take it to meet people even though I know enough and have experience enough to teach the class. So hopefully I meet someone or this will be a long 20 hours. Taking the class lets me into a smaller support group that meets where I go to counseling and which is on a better night that Sunday which is the big group.

It's funny everyone brought up soup when I was first feeling ready to try. I really haven't cooked much of anything in a very long time. This meant that I didn't have ingredients. I had 2 first choices to make. I forgot an ingredient for one of them so my first soup is cooking in the crockpot right now. It's a good, diabetic diet appropriate vegetable soup. I'm not on a diet yet and am not really following one yet, I'm just trying to do better than I was. I have too much going on to leap onto a diet and I also haven't heard from Dr. Body whether he wants any labs done. If he does I'd rather have my normal diet tested than modifying it too much. I suppose he could be off this week since normally I'd hear from him by now and the holiday did make taking a week off attractive. I hope I hear today or early tomorrow because I need to have them drawn in the morning. Not that it matters; I'm sure I'll be going for labs next week too.

Tomorrow has all sorts of fun stuff planned. I bought a fruit tray yesterday that the fruit was pure alcohol. Because fruit trays are expensive I need to take it back. Hopefully I'll get my money back. I'm not sure I have ever returned something to the grocery before. I also get blood drawn and see Dr. Mind. Hopefully that can be accomplished without another review of rules and things I should not do. I added a tiny bit of klonopin after my last post. I only have a few pills and I checked with Dr. Brain. Until I added that part Dr. Mind was less than thrilled with me. I'm not used to rules like that. I'm used to being allowed to make small changes. While I know that for now that is not something I can do I am also not interested in pain keeping me from sleeping and if I have a way to help that I will, checking with Dr. Brain as I go. This is where the new stuff with Dr. Mind to keep me safe gets hard. I know that I have exactly no leeway right now but that feels so off because it's never been that way. I know that klonopin is really not something to mess with since it is the medication I was focused on during the suicidal period. But I don't have enough to do anything even if I wanted to, which I don't. The aftermath of my last 2 weeks is already getting old. I know why the rules are as they are but sometimes I feel like I'm being treated like a young child, not an adult. But that probably is because most adults don't need safe plans and assist to carry those out. Right now I do and I think it's like to be a very long time before that changes. It's also hard to go to counseling because I remember so little of recent months so talking about it is difficult. Dr. Mind said something about he probably should have pushed me harder to do some things differently (something like that) and I'm sure that includes talking more about the suicidal stuff and going to the hospital sooner. I am sure he felt he was in a corner because if he'd said I was suicidal I would have denied it. But I can't even be sure what he is referring to. Things are very blurry in my memory and I'm not sure that will ever change and I'm not sure that changing is that important since the memories probably would only hurt. I am however struggling with not remembering some of it because it is scary and so much is missing that I am quite sure I was much sicker for much longer than I ever realized. I think that things crumbled when I tried work and it didn't happen.

Tomorrow is the first time I need to fill a pill box with Dr. Mind letting me into my box. That's a very weird feeling.

Everyone gets in on this. My insurance had someone call me from the psychiatric nurses to ensure I was adjusting to home and was safe. It was weird because it wasn't expected. I hate going through am I suicidal with a random nurse who knows more than I would have thought. Even my insurance wants me to go to intensive outpatient. Too bad there aren't any programs around here that operate the way I need them to.

Hmm, can't think of anything else. The last 2 days were tiring but not overly interesting.

More when something interesting happens. I may not post every day 3 times a day anymore and while that's a change I am really fine if I don't post. It just takes a lot/all of my energy to get back into the swing of things. It's amazing how little energy I have. Friday I'm going to babysit my niece so I'm pretty sure that day will be light on posts as will Saturday when I have to go to see Dr. Brain. Both of those will be hard days. Hopefully good, but hard.

2012-01-03T22:48:00.001-05:00

Just wanted to let you all know that I'm fine, just very tired after a long family day Monday and seeing Dr. Mind and going to the grocery today. I will post for real on Wednesday.

Good

2012-01-01T14:48:00.000-05:00

Even before I was discharged from the hospital I had started working on the nightmare called sleep. Every night I would try to fall asleep without a sleeping pill. Every night it did not work. I've had only 1 sleeping pill since coming home (4 nights). Maybe 2. But regardless, not much. I've had to stay up pretty late most nights though. However I would rather be on an erratic sleep schedule that use sleeping pills too much since there aren't many good, safe choices and I seem to develop tolerance rather quickly (just to sleeping pills). But last night I did it. I forced myself to stay awake until midnight because people fire guns at midnight which has scared me out of a deep sleep before. By 11:57 I was barely awake. I checked the clock again at 12:02 and the next thing I knew it was morning.

Now I just have to do it again. And again. And I need my muscles in my neck, upper back and face to relax. I very sore because these muscles are so tight. I suspect this is because of not being on benzos after consistent use for many years. Not sure what will happen there since there isn't a great benzo option left that I'm not tolerant to and the antihistamines are causing pain but not much anxiety relief. At this point it takes the edge off at best. It is just not enough. It doesn't help the panic attacks, the very sore muscles, the tooth grinding, the falling asleep, the obsessive thoughts, or the feeling that the anxiety is taking over everything. Essentially this is saying the antihistamines do nothing. I think the hospital doctor does not like to use benzos on someone who is suicidal. In terms of enhancing safety by restricting what is available this makes sense, but I am not sure there is a lot of benefit when they have no choice but to send me home with tons of other not very safe medications that I am still routinely taking. But that's the only explanation for why he decided I couldn't have these meds. Dr. Brain is back to work this week and I am hoping that she is able to help. I see her this weekend so should get some relief then but I'm hoping she has something for me sooner than that. I don't like being sore all the time and it is causing (I think?) headaches too. Tonight I am going to have to start working on tolerating my bite plate again to help with the facial pain and headaches. But I desperately want the muscle relaxed, pain-free and anxiety-reduced night that I used to have routinely. I found that I had a few klonopin left and may decide to take one of them. It probably won't do much but trying it out lets me both see what happens in terms of klonopin's effectiveness but it also means that if it works at all I can have at least a break from the anxiety.

I've been waiting all day to see when my sister and her family were arriving at my mom's. I'd planned to go down there for "out of the house" time today. Oddly nobody has heard from my sister and she didn't answer when my mom tried to call her. This is making my mother cranky, listing all kinds of other things they might be wanting to do based on her assessment of the inconvience of this event. I keep pointing out that for most of my career I've worked Christmas eve, the day after Christmas, New Year's eve and New Year's and that nobody went nuts with this for me; in fact I spent a lot of time standing up for myself about needing to leave on time, etc. My mother cranky apparently means that she'll bring up everything I've done that she doesn't like if given time. I really wish she would just deal with Christmas had to change, it's not anyone's dream situation, glad to have me home, MOVE ON. She doesn't want me to talk about being sorry, yet she keeps pushing. We'll see how long that lasts before I lose my temper.

Anyway, not a lot more to say right now.

Dr. Google says....

2012-01-01T06:30:00.000-05:00

I decided I wanted to know something about my blood sugars before I'm going to hear from Dr. Body, which is Tuesday at the earliest. Mostly I wanted to know if he was going to be doing testing involving glucola because I wanted to line up arguments against that as I am not good with drinking bad tasting things without gagging and/or vomiting and I want nothing to lower my lithium level which could result in having to go through all the adjustment symptoms for longer than I already am. I really don't know what he will do but the 2 results I have are enough to diagnose impaired glucose tolerance, aka pre-diabetes. The high not-fasting level I had 3 years ago is another sign of this. This means time for a diabetic diet, exercise, and monitoring as I'm pretty certain to develop diabetes in the next few years. The good thing is that my sugars normalized rapidly with weight loss the last time and there isn't a reason to be too concerned now. Because I am high risk and on high risk meds more testing may be indicated and I may be pre-emptively treated with metformin as Jean Grey is. However there won't be a need to rush into that which is good since one medication upsetting my digestive tract is plenty. Metformin, as I think about it, is probably not an option for me because of the likeliehood of diarrhea which could screw up my lithium levels. My lithium levels have the potential to drive me batty but at the moment having good levels I can tolerate is key.

So it's not going to be all bad. It's also probably not the best thing that ever happened to me, although I'd rather know and monitor than not know and be surprised with full-blown diabetes.

Oh, and Michal asked about type II diabetes being mostly lifestyle. I don't think you can pin any illness to 100% lifestyle. As a healthcare professional that sets my nerves on edge as I don't think you can ever be so certain that you are blaming someone for causing their own disease when that guilt is not likely to help someone manage the illness. The other issue with saying it is 100% lifestyle is that sometimes people without risk factors get it. I see that sometimes; I'm thinking of one woman who walked down and up the mountain side that is her driveway every day for 35 years, was underweight if anything, and was in her 90s. No clue how long she had been diabetic but I seriously doubt it was her "lifestyle". I mostly know that my family has a nasty habit of dying from diabetic complications and that my doctors watch me closely. Here's what WebMD says:

Anyone can get type 2 diabetes. However, those at highest risk for the disease are those who are obese or overweight, women who have had gestational diabetes, people with family members who have type 2 diabetes and people who have metabolic syndrome (a cluster of problems that include high cholesterol, high triglycerides, low good 'HDL' cholesterol and a high bad 'LDL' cholesterol, and high blood pressure). In addition, older people are more susceptible to developing the disease since aging makes the body less tolerant of sugars.
In addition, people who smoke, have inactive lifestyles, or have certain dietary patterns have an increased risk of developing type 2 diabetes.

In addition it is known that there is a connection between atypical antipsychotics (the typically used kind now; whoever named them atypical was not thinking of the future) and diabetes. Some of this is weight gain. Some isn't. So they monitor anyone on an atypical carefully. (This is another reason lifestyle doesn't work. I mean, sure taking that med is sort of a choice, but mostly it isn't. This is why I know that this 2 time result is abnormal for me; I typically am in the low 80s. I don't gain much if anything on Seroquel/with adjustments to it. My medication weight is from lithium and from meds I don't take anymore, mostly Depakote. Seroquel actually helped me to lose weight the last time because it let me come off Depakote and kept me mentally healthy enough to manage the diet. It appears the diet is now not optional. That will inevitably be hard at times because managing a diet and mood swings both may not be simple.

Hopefully things improve with weight loss and I don't ever have to think about diabetes again. Not likely but I'll dream.

Ok

2011-12-31T17:36:00.000-05:00

My cat is ok. My first guess was correct; the blisters are from liking and pulling out her hair. No treatment needed unless she doesn't leave it alone. Since I have yet to see her touch the area and only found it because I happened to pick her up with my finger in the right spot I think there's a good chance she'll be fine. I also know that she no longer can handle being left for 2 days at a time. I know she is just now starting to trust that I'm home for real and she just doesn't have the ability to put together gaps in her care anymore. She probably worried endlessly about who was going to feed her. And as my mother pointed out they've had me here with them nearly constantly for moths.

I survived my trip to the vet (it's 45 minutes each way) without issues. The cat I took in today lived with me in Michigan and got used to riding in the car every 6 months or so for trips back to Ohio (and it was two of the furthest possible points to reach, so it was a long trip). She actually really likes car trips. She could do without the vet though. Still, much better than the other, huge cat who is hard to get hold of.

What else? My blood sugar. To be clear, because my antipsychotic is a factor, as I talk about this (or please God as I don't have anything to talk about), if this is happening it is not because of the antipsychotic as a first or second cause. It often is but I've been watched so carefully since starting it and even more carefully since being on a high dose that I know other factors are more likely to be the trigger, if anything has triggered. My family history is so bad that a doctor before Dr. Body or even the heavier psych meds told me that I needed to be checked annually because I am unlikely to NOT become diabetic eventually. As a result and because I have been on risky meds for a long time now I get tested frequently. We've been even more careful since I developed the diabetes insipidus issue about 5 years ago (wow. That flew) because it can mask the symptoms of real diabetes (hence the use of diabetes in the name, confusing computers that don't have rare diagnoses listed for years). I have fasting sugars done a few times annually, non-fasting periodically, an A1C annually, free insulin this year, and I've had 3 years of knowing that I had a pretty high non-fasting sugar at just this time of year, leading to huge weight loss. In the last 6 months I haven't felt well enough to eat healthily or exercise and so I gained weight. And now much sugar is back up, more alarmingly to me because it is fasting that it is now an issue. Also diabetes would explain the headache and upset stomach that I've been fighting for the last while and blaming on lithium. I think it is still lithium but the hospital doctor thought it was too long. However, he has been warned by Dr. Brain about my weird metabolism of the magic salt but not seen it for himself so I'm not sure that he fully understands that "this isn't typical" is meaningless for me. My level should be much higher than it has been in nearly 6 years and the symptoms are consistent with being on a higher dose after toxicity. I'm hoping the sugar is just back to normal when retested. I am prepared for it not to be but equally prepared for it to improve dramatically. So the point was that the antipsychotic is about the 4th thing in line as the cause. If I am diabetic it may be sooner than it would have happened, but not far in age from when my uncles and now cousins were diagnosed. I do have to start losing weight. However right now that will be more by eliminating things I shouldn't eat from the house and replacing them with better as I get out more. I had meant to go to a store today until my mother mentioned how crazy it was yesterday evening because of people grabbing party supplies. I had forgotten the date.

I think I mentioned being very sad because I ordered a picture of my mom's cat who died as kind of a memorial and then it didn't turn out well. I actually got the picture while I was in the hospital and looked at it today. Turns out that at first glance it isn't right but if you look very long you find that from the right perspective it is actually really good. So I'm happy about that project and will give it to her tomorrow. I'm wanting to go down to maximize time with Anne and my sister. It all depends on panic attacks though.

I wish blogging or email counted for Dr. Mind. They don't. The purpose is getting out of the house every day and interacting. Which is important at this stage of recovery from wanting to die because it means being engaged in the world as well as having a chance or breaking any bad thought loops rather than just lying here staring at nothing and repeating the bad thoughts in my head. His reasoning is good. My panic attacks are a good reason to not go when I am not feeling well as until I have meds that help I am needing about 2 hours of effort to recover from each one.

Oh, and if I say something weird, consider if I might have thought I was being funny. I keep trying to make jokes and confusing people. Apparently I'm not there yet.

Have wonderful and safe New Years'.

Oh yeah, IOP the conclusion

2011-12-30T20:42:00.001-05:00

I forgot about this not being something that you know. Too much going on for me I guess. Anyway, the IOP won't be happening. The place I wanted to go just isn't right. The other choice is even further away than I thought when I realized it wasn't an option. It isn't at the actual hospital but at an off-campus second site that would be 95 minutes in normal traffic per Mapquest, meaning that snow and rush hour could make it 4 plus hours of driving daily. There are no other programs. So that means putting together something ourselves. To make it worse the NAMI meeting I wanted to go to requires having attended a class that doesn't sound particularly appropriate for my needs at this time (would have been great in 2002). Some of this is hard because I'm not doing this in the usual order. Usually by almost 10 years after diagnosis you are not trying to adjust to stability that has imploded and unfortunately most people have experienced the degree of suicidalness I have just come through before. So unless one of the Drs. feels I need to attend the course and review skills I've had for a long time there isn't at all what I need. There is regular support group on Sunday nights; I'm not sure that it is ideal because keeping me out late (and I think this would be going both directions in the dark) isn't great. It's sort of Dr. Mind's call at this point. I'm taking a break for hefty decisions for a while.

Ideally the hospital social worker would be helping. However she doesn't like me much for some reason (this isn't my first problem with her) and she just avoids helping me with anything. They initially offered to have her get in touch with me and try to help but I didn't want to deal with her either not calling me or not being helpful; I needed to ideally be enrolled in the program and knowing what I was doing; she would have not gotten information at this point, just referred me and then the same thing that did happen would have; I would have had questions, called them, and found out that the referral wasn't appropriate.

The talk to someone thing is to get me out of the house and interacting. I'm supposed to try to leave daily. I think. But that's going to depend on things like today did with panic attacks. Until I have some anxiety meds that I can take more of if I become extremely anxious I am kind of stuck fighting those the best I can with deep breathing and decreased stimulation. The trick is without specific destinations I start to feel panicky. The next few days I'll be meeting this goal as tomorrow is the vet (the thing seems to be healing but I can't get a very good look, I don't know what the cause is so don't know what it is (burn vs. other injury), and for all I know it is a gross infection from chewing on herself while I wasn't here. She also needs checked for anything else and that is not a one woman job. If it is a burn I want to know my vet's position on her heating pad. I thoroughly messed with it and it's warm, not hot, seems to be heating evenly and there is no indication it could burn her, particularly not rapidly enough to hurt.) and then the next 2 days I'll be at my mom's for time with my sister's family and then "Christmas". And Tuesday is Dr. Mind day as it Thursday. Saturday is Dr. Brain day. So I only have to do something Wednesday and Friday. Or I try to talk him into letting me off the hook. Which is unlikely since isolating helped me get into this mess and isolating is dangerous. The talking thing means just talking to clerks in the store, librarians, whatever.

My poor injured darling is screaming at me (trust me) to feed her so I guess I should since I have, according to her, caused grievous harm to her need to eat constantly by being away. She wants to pick everything right now-what, when, and how much she eats. Whatever cat.

There's another layer to all this by the way. My mother is being pretty obnoxious about guilt and the moving of Christmas. Things like saying my niece may not enjoy it now. Things that HURT. Dr. Mind was livid about this last night. I've been pushing it away because it hurts but I don't know what to do about it. He wants me to say something back, including offering a referral to counseling of her own. While I don't think this happening I do appreciate that he was mad for me because I know it's not appropriate but I have way too much on my plate. I need him to take her on for me. (If I brought her in he would, gently and kindly and then she'd leave believing him to be on her side of everything. Forever.)

And the cat is DYING she says so I must run before she is just simply a pile of hair.

Fantastic

2011-12-30T19:44:00.000-05:00

took the time to check out my labs from the hospital today. Good thing I did. I had 2 fasting blood sugars taken. Both were high. Like I may have developed diabetes thanks to weight gain high. My family history is not good with diabetes. At least 3/4 of my grandmother's children who lived to adulthood died from it (my father is the only one still alive and we don't know where or how he is). My cousins who are older are developing it. And my mom's mother had it severely and died from complications of it last summer. My fasting sugars have always been good. Typically I have an A1C (test of sugar metabolism going back 3 months) done annually but this year I had a free insulin instead which apparently more accurate and it was normal. However that was 9 months and a lot of weight ago. So I have emailed Dr. Body and expect to have more blood taken when I have my next lithium level. I don't know how to handle this. Those who were around about 3 years ago may remember me working very hard on a diet for those at high risk for type II diabetes and losing about 60 lbs. Those stayed gone until this year when 25 or so crapt back on as I've eaten a very high carb/not balanced diet.

My vitamin D has also dipped below normal, despite being on supplementation. I'd accidentally started taking more than I used to anyway (forgot it was in my multivitamin) so hopefully that will go back up with that, but it can explain some of the feeling crappy part of the last few months as it can make you feel tired. In fact I remember being amazed when it was first found and treatment started and I suddenly felt so much better with my levels normal. At that time the levels were done differently (I think they actually changed the lowest number they want to see) and my level was very, very low. This surprised nobody since I hadn't been able to be outside in the sun for much of the year in many years because of the medications. Supplementation got it back up and it had stayed, to my knowledge, at normal.

Can I say that this is very not fair? If it is diabetes and all signs point to the weight gain as the reasonable cause of onset then presumably getting the weight off will help. Hard to know how much between the family history and Seroquel increasing my risk level.

I am really missing anxiety meds today. The antihistamine only goes so far. This is past it.

My poor kitty

2011-12-30T16:43:00.003-05:00

My cats stayed home alone while I was in the hospital.. My mother fed them every other day and tried to give them so attention. But it was Christmas and so there wasn't a lot of time. Since I got home they've been very clingy; one of them still hasn't let me out of his sight except when I left yesterday to see Dr. Mind. My other cat is, as I've mentioned before, quite old and not in the best health and she also has periods of being very confused. My being gone must have been very hard on her as she (I'm hoping as the other option is that her electric bed warmer burned her and that is guilt I can't stand although I think that is the deal now that I think of it). Crap. I just discovered a hairless, blistered area on her belly. So we're going to the vet tomorrow and I feel so bad, especially now that I'm sure she burned herself which would mean taking away the head that keeps her comfortable. I may try to protect her with covering it, but I can't believe it hurt her; she's had the thing for years and while she uses it more now it's not like she is unable to change positions. I probably need to check her for other injuries but right now she is so peaceful sleeping on me that it will wait. This burn thing looks like it is relatively healed so who knows how long it's been there. I only found it because I grabbed at it when picking her up when she wanted in the bed where I've been fighting a panic attack for several hours. Bleck.

It's not easy being green

2011-12-30T14:27:00.002-05:00

I fell asleep on my own last night! I can't remember how long it has been since I did that except for the night after I didn't sleep because of suicide watch in the hospital. I was up late but it didn't seem like good idea to take a sleeping pill because I was feeling on the verge of a panic attack with it already trying to start and my pulse very elevated. But the thing that is truly amazing is I'm fighting another panic attack right now and have discovered that all it takes it to think of making a phone call. All I am supposed to do for counseling is to talk to someone daily. I was going to cover that for today with phone calls about a few maybe if I'm fortunate support/therapy group possibilities. Turns out that I can look up stuff (which is what I was doing last night when I got panicky) but trying to handle this is enough to cause panic. So I won't and will try again Tuesday. I have something in place for Monday and Thursday (Dr. Mind) and Wednesday (NAMI-National Alliance for the Mentally Ill). Ideally I'll get something for the other 2 days or better yet a 2nd program for one of those 3 days to save trips. It's not looking good.

I can't believe phone calls are making my panicky. That would make my job impossible all by itself.

One thing that I'm getting verified over and over is that this will not be easy. In the hospital I didn't think much about it because they say go to group and I go. That was the advantage of the outpatient programming I wanted to do (basically 4 hours of various types of group therapy every day; a step down from inpatient). Once you're there it is easy to get the treatment. But trying to put it together myself is anxiety inducing.

I hate feeling like this. My heart feels like I ran 7 miles. Instead my major achievement of the day is taking my AM meds.

Not bad overall

2011-12-29T22:26:00.000-05:00

One good thing about having talked to Dr. Mind 2 times during the last 10 days is that he knows how vulnerable I'm feeling and how fearful I am of having someone scold me or be angry for all of this and how embarassed I am and ashamed of my behavior in doing everything I'd been taught to not do. So he treated me as the delicate flower I am at the moment, mostly. Of course this was while he packed away every sharp thing in my house. And he made a point that nothing he is doing with helping keep either meds or sharp things away from me will stop me if I choose to hurt myself. Oddly it's not something I'd thought about. I knew it factually but either I am done with that part of my life and came home feeling that the safety measures are comforting (if annoying) and; I know they will be effective. But he's right. I could replace everything I gave him plus more. After a week of repeatedly saying things like "I'm here because I lied" "I didn't know how to say what I felt so I hid it" "I wish I had died. I want to die still.", or being in a group the day after Christmas (ie when the only reason you're on the psych unit is you want to die and are actively being stopped) and asked for everyone who was there because they were suicidal to raise their hands. Every hand in the room went up. Mine included. And I was a lot further down the path to action that many or most of them. I can't explain how painful I found it to find myself saying many times, saying it because I needed to hear myself say it, that I wanted to die and more than that wanted to cause it myself. Saying the words "I had a plan" was so shocking they kept echoing in my head. That was followed by "I had a plan and I meant to carry it out the next time it hurt too much". That still makes me a bit sick. But not as sick as "You know Jen if you really wanted to do this nothing I do would stop it". Because it is true. Because I managed to fool him before by lying and there is not much he could do to make it stop. He's right. This isn't something he can protect me from. He can try, and he can decrease my ability to do something impulsive, but I can easily beat the system if I want to. I don't. I hope I never do again. i think if this every happens again it will be easier for me to get help; I know what those words sound like now. I know pretty much the whole process of dealing with it and I know that my life would have been a lot less painful if I had chosen to get help weeks ago.

I'm learning that this takes a certain chunk of your life away. Late fall/early winter Dec. 2011 is lost now. It is so entangled with the desire to die that I can't even start to sort it out. That part of my life was overtaken by suicide. I don't really want to remember. But this did not happen without a price, a price much lower than it could have been.

That was a very quiet and solemn session. We talked a great deal. In fact Dr. Mind thought the time was up and instead we had 15 minutes left. There was the strong point made at the start, followed by lighter talk and the IOP thing and then back into harder stuff. The last 15 minutes he was reading the typed and edited to eliminate what I had for dinner version of my notebooks from the hospital. I wrote about 150 pages during that time and writing helped me work through the shame and horror I felt, take steps along the path to getting help and ending the denial that I was in big, horrible trouble, and the analysis of how I got to be in that position. With enough time I was able to once again speak aloud of some of what I've thought and felt, and having this in his hands gives him the ability to know what I thought, how I got to today from a week ago, and lets him see things I could never say. I also have been able to use this to point out to him ways in which I know now I had been lying/hiding/avoiding telling him and signs that this is what is going on inside. Because I don't remember much of our last few sessions I am telling him some of this and then finding out I was using other words. I also was able to share with him that my saying I am feeling numb is a danger sign because it seems to be code for I feel so helpless that I have no feelings because I have blocked them off. We also talked a bit about the grieving process that I have started for my life before these last 6 months.

I'm actually feeling a bit sleepy so I'm going to go and see if I can sleep. Probably not but I like to try when a chance arises. It wasn't until today that I realized WHY my anxiety meds were taken away. Duh. If that is what I want to kill myself with why would they give me more? I'm on antihistamines now and had to ask for those. They aren't ideal but they help except at night when I think I need more or something else. I want to have something so I don't need sleeping pills nightly. I see Dr. Brain next week. So we'll see then.

Where things are

2011-12-29T12:26:00.000-05:00

Yesterday was frustrating. I'm sure I've written at some point with past hospitalizations about my frustration with the social worker who very clearly does not like me. Well, this time I tried to get ahead. I asked her my 2nd day there to come see me for a couple minutes. She stopped and told me she was out of time but "first thing Thursday". Fine. Thursday came and went and she never came to see me. She was there, she saw nearly everyone else, but not me. I knew this Tuesday would be likely to be my last chance and I still knew nothing about the IOP program that another social worker had recommended that I attend. So I asked her to come talk to me. She said she would and that she was working on my discharge stuff. I told her I had specific ideas about when I would start IOP and also that I wouldn't be available after 4 because I had a phone call with Dr. Mind. She never came.

Yesterday we discovered she hadn't started my discharge. A social work student came and then later returned to tell me they had no information on the program I wanted to go to and that they would not be able to refer me. I was very upset and pulled the OT aside and talked to her. She was kind and efficient and she had heard me ask the social worker to come talk to me. So she and the nurse found a way to refer me. When I was signing paperwork I was told I had to start the next day. I called the place and told them why I wasn't able to start today, etc. They called back and told me if I wanted the hospital referral to work I had to start today but could do a psychiatrist referral next week and start then. However I would not be allowed to see Drs. Mind or Brain. If I self-pay I can sort of lie and do it but it would still be "a conflict of interest". I assume for them as it wouldn't be for me and Cleveland Clinic does their intensive outpatient completely differently. Their program also is not the same structured thing that Cleveland Clinic runs; they anticipate a 1-2 week use of the program although some people do stay longer. Cleveland Clinic runs for 5 weeks for everyone, making sure everyone get the same skill set. For one thing I am not giving up my doctors; no way would that be good for me. For another this sounds more like babysitting during the early phases of recovery than what I want. But I should have known this Tuesday at the LATEST so I could have decided and had help finding something else. Instead I am searching for a program. There's another one in the area but it would be 75+ minutes of driving each way and that is too far for 5 days/week. And again, I should have have help with contacting them but I didn't so I will have to do that myself if Dr. Mind thinks I need to take on the drive.

So this made me totally stressed and upset and then I had to fill pill boxes, throw out unsafe meds (I threw out 2 cups of pills that were unsafe to have around, plus several bottles that I wasn't really worried about but didn't need either). (By the way, if you ever have to dispose of pills the best way to do it to mix them into clay kitty litter and water. That keeps someone from finding them and steal them whole. Trick courtesy of hospice.) So I did that and then locked up both the meds I will only have access to by bringing the pill box to Dr. Mind's office where the key is and the ones that are safer plus 2 weeks of pill boxes are in a combination lock box with the thought the combination and my shaky hands will slow me down enough to think in an emergency. My sharps are gathered (and it's scary how many razor blades I could find in this house) and in a box on my porch. I wasn't supposed to have them sitting in the living room so I put them out there so I didn't have to go back out to the car. I figured someone stealing them would be a favor.

And that's about it from the other side of that wet, sad land in which the rainbow grows.

Home

2011-12-28T20:23:00.002-05:00

I am home. It has been a long, stressful day with the social worker screwing things up with my going to intensive outpatient. It looks as if that may be impossible. I'll explain later. I am in the midst of 'suicide-proofing" my home and need to go back to that. More later or tomorrow, just wanted to say hi from my own home. Also, I have never liked the paint color in my bedroom. I'd picked one and my mom had to go get it and make sure it flowed with the other rooms and what I'd chosen would not work in here. So she picked, as I'd told her to and it was always not the mild light peach I wanted. I never realized though until tonight that this color actually agitates me. It is, I suppose, possible that merely being in this room is agitating after what has been going on, but I really HAVE to get this painted. Hate it SO MUCH. But home is so peaceful and wonderful and there is an orange cat with both paws on my leg and 45 minutes of continual purring since I sat down for a break.

2011-12-27T21:04:00.001-05:00

PS. I want these annoying plastic bracelets off.

2011-12-27T21:03:00.001-05:00

1) I want to go home!

2) Dr. Mind and I have a safety plan worked out.

3) I am very shaky tonight and dropped 2 toothbrushes in 20 minutes. Yay. I really hope this is not related in any way to my lithium levels.

4) Thank God for laxatives. My belly just dropped inches and I feel sooooooo much better.

5) I hate TV even though I keep watching it.

2011-12-27T15:59:00.001-05:00

I can't remember what I posted last. I got a very bad headache and upset stomach yesterday evening that didn't go away until noon. My lithium level is being checked shortly and then if I'm still doing well tomorrow and my level is ok then I'll be leaving I think. Aside from this snow storm....I'm waiting for the social worker to not come and talk to me about the intensive outpatient program (IOP, get used to it) I'll be doing. This is funny since I asked her to please do so before setting it up so I can tell her when I want to start and get some information. Of course I'm still waiting for her to come see me last Tuesday AND last Thursday too. Oh well.

Today I'm working on a safety plan, including destroying a lot of medications and finding a way to safeguard the others. I'm hoping that Dr. Mind will keep a lockbox of them for me or that he will keep the key to the lockbox and I'll carry it back and forth. I have an email in to Dr. Brain about how much of most meds I can safely keep. When I get home I will need to sort and toss a lot of stuff that isn't safe and then fill pill boxes for a month or even 2 so that I don't have to do that at Dr. Mind's, assuming he's willing to store the stuff I can't have at home in large quantities. I'll just add things if they change; I expect a few things to when I get out. For some reason my doctor here doesn't want me on much anxiety medication. The antidepressant I tried for anxiety did NOT work (couldn't dose adjust and we think it caused mania).

I have time to talk to Dr. Mind here shortly. Next time I will SEE him. I'm going to ask to leave tomorrow if it is remotely possible so that I can handle the med thing before I see him rather than after a hard hour and a 60 minute drive after the 60 minutes (plus time for all this SNOW all of a sudden) to his office. Plus a stock for a lock box.

Anyway gonna go let me mom know her days of catsitting are limited.

2011-12-26T09:26:00.001-05:00

Last night my roommate was being inappropriate with her boyfriend. I had no idea what to do because it's so small up here and you don't want enemies. So I didn't tell the nurse and was going to try to deal with it today. Then I was going to ask Dr. Brain to help. But I managed to handle it and am moving to a new room today with no way she'll know why. The nurse said she wished I'd said something then so they could stop it but seemed to see my dilemma. I sort of got the impression that she has had complaints before which wouldn't surprise me because it happened when I was here before and lived next door to her.

Cute. I just heard a nurse try to find someone and wander off mumbling "she's the black lady." Great.

And for now I shall go because I don't like this being visible.

2011-12-25T15:51:00.001-05:00

Merry Christmas. Those words are meant but are still very weird to be saying from here.

I saw Dr. Brain today. She isn't mad at me and doesn't hate me or want to get rid of me which I had feared. I'd actually gotten rather freaked out about this. When I cried she hugged me for a long time. She made several good changes: d/c a med that was started when I came in that I don't think is doing what it should be; increased the frequency of my anxiety meds; increased the dose of my constipation meds (yay, they were going to make me take milk of magnesia and that would be likely to make me sick which would throw my lithium levels); gave me PRN sleeping meds since I've not been able to sleep the last 2 nights and they had to request meds for me in the middle of the night; and ordered a lithium level I think tomorrow to see what is happening. We talked about my feeling right now that I don't want to think/don't seem able to think of plans past the intensive outpatient treatment I'll do for about a month and she agrees that I have so far to go and need a lot of treatment including probably months more of twice weekly with Dr. Mind. She agrees with my decision about leaving my job, just accepting time on long term disability is needed to recover and that it's ok to look no further right now than getting to the end of intensive outpatient. She also agrees that it is time to do everything I can to get my house on the market and move closer to my mom. This will take a while but it is another of those need to be done things. I need to work in the city where Dr. Mind is so that I can do twice weekly sessions and possibly a NAMI group as well. I still don't know how long I'm staying; she's back tomorrow and I'll try to get some idea. However it's not really her decision so I don't know; I think she'll be able to give an estimate at least. I need some idea because if it's not by the end of the week I need to have mom bring checks up to sign and so I can pay some bills. I think they are going to keep me until they are sure I'm well. I just really want to be home by Thursday night. Maybe I can talk them into letting me go that day and see Rick on the way home, then I can manage the financial stuff when the bank is still open on Friday. Time is really confusing with the holidays and a lack of frame of reference.

Otherwise "holiday cocktail" is aka fruit cocktail, hospital prime rib?roast? is very hard to cut with flimsy plastic utensils and my mom is a better cook than the hospital. I have a new roommate so my days of being alone are over.

And I am not winning this battle to stay awake. It's too late to nap with the insomnia but my increased anxiety med really is making me groggy this afternoon. It also so far is helping the mania so that's good.

Oh, and my suicidal thinking is down to "not much" and I can READ. I haven't been able to really read in months.

Things are improving.

2011-12-24T20:50:00.001-05:00

Doing ok. Nausea better. Cried a bit today which I've not done much of. I have rested a lot, colored (boring), played 2 games of Sorry, and worried a lot about what "holiday cocktail" and hospital version of "prime rib" will be like.

Have good Christmases wherever you are!

2011-12-24T13:51:00.001-05:00

Today is probably going to be a pretty quiet day for me. I'm feeling sick from lithium and was up until 2:30 AM. I'm hanging out in my room and trying to not move much. Exact opposite of my last admission.

2011-12-23T17:58:00.001-05:00

Starting to feel manic. Not good.....Need to stay in the MIDDLE. (need to FIND the middle).

I opened up a LOT today both with my nurse and in group. I talked about how lying has nearly caused me to harm myself and how I lied to everyone in my life to get there. I also realized that the lying started to get bad when confused on lithium and so then it grew out of control.

Now to stop lying.

2011-12-23T12:54:00.001-05:00

Brief explanation: Michal asked about my statement about making it this long by grace. What I mean is that I have been pretty seriously (is there any other kind?) suicidal for months now and I did everything that I'm not supposed to do. I didn't tell anyone that this felt more serious than the harmless but annoying "I wish I was dead" thinking I had been having for so long. But after the lithium toxicity I started thinking about ways to stop living if I couldn't handle it anymore. I wanted I guess insurance is the word that I was going to have a way to stop the cycling if nobody else could. By the time I got here I was sitting in my room thinking about how different things could hurt me. That's when I told on myself. But I've been living in a very, very dangerous situation for a long time now and I was very, very stupid to do that. I have various excuses but the truth is that I was embarrassed and didn't want to tell anyone and I didn't want to have the only way I felt was sure out of this situation stopped.

Now I am in a much safer place but things could have been so much worse and so dangerous. I have a very long way to go to recover from this one and to develop safety plans with Dr. Mind. I guess we also have to talk a lot about this until I am not so ashamed of thoughts I can't control.

2011-12-23T07:40:00.001-05:00

I feel much more raw today. I think my numb period is over. I think all the things I said last night to Dr. Mind made me have to feel again. It all feels much closer, and also much scarier as I realize what I've been doing these last weeks in lying to myself and to Dr. Mind. Only grace kept me alive. I'm trying hard to let the emotions stay, even if it means the dreaded crying. I'm also going to beg for a different form of anxiety med. because ativan doesn't make any difference. I am so tired today but it is tired versus I can't move because I'm under so much weight.

2011-12-22T20:12:00.001-05:00

I had a long, teary (finally, I cried hard) conversation with Dr. Mind on the phone tonight. It's not much fun to explain that you've been lying to people who you aren't to lie to (with the distinct disadvantage of lying to yourself making that harder) and put yourself in a bad place because of that. He was kind but obviously this can't go on again. There was so much going on that I have to process, but I have now spoken with him and will again Tuesday either on the phone or in person.

Hopefully that's it for tonight. Gonna try to watch a movie and get a shower and then go to bed.

2011-12-22T18:29:00.001-05:00

B asked a question today that I wanted to explain. She was saying I seem depressed, not bipolar. There are a few things going on. One is that I am more depressed right now than usual. I have more depression always. The second is the type of bipolar that I have; I am both manic and depressed at any given time most of the time (I can be only at one plane). Right now I'm depressed but have manic spells later at night. Those seem to be responding to treatment but occur after I'm not able to use the computer here. However for the purposes of treatment right now depression is the main issue. Anxiety is anxiety but also sometimes anxiety is how mania expresses itself. And in certain mood states I feel more like posting than in others.

Make sense?

2011-12-22T12:22:00.001-05:00

Today I found out that I'm here indefinitely, can't have more anxiety meds at the moment and a nurse accused me of putting a pill in my pocket and so I got searched, I heard "and where is it in your room?" ("my stomach?") and I'm sure my room was carefully searched instead of the usual brief sweep. Fun stuff.

More later, gotta eat lunch.

2011-12-22T07:56:00.001-05:00

Well it turns out that 4 horrible hours of sleep one night and the emotional rollercoaster of the last few days combine to make me sleep. 8 hours with only 1 30 minute awake period. I really can't remember what I said yesterday; a social worker met with me and I finally cried a little. Not enough, but a little. Dr. Brain answered my email and didn't sound mad. I just still have some serious issues to work through. Today I'm going to ask when they anticipate going home. I don't want to but wondering isn't good either.

breakfast...

2011-12-21T16:15:00.001-05:00

OK, so those who remembered the last time I was here there was a nurse who drove me nuts. She is my nurse tonight. Please pray that goes ok.

Otherwise we did have a group; unfortunately the topic rotation landed on the same one I did last time in this group. But it was something.

Have I told you that my niece has pronounced herself a "toddler"? I don't have a baby anymore.

2011-12-21T11:57:00.001-05:00

Please tell me which anonymous you are. 2 anon, both on the West Coast and I can't see the blog to figure out who you are. Whoever is whapping their head, stop it! Thanks for sharing your caring though.

2011-12-21T11:55:00.001-05:00

I talked to the dr. I am allowed to close my door. That was what I meant by staring; I was on 15 minute must fully see me checks until they decided I am not a danger to myself. I don't think any meds are being changed today, just to see if I can benefit from what I started yesterday. He is going to arrange a proper lithium level be done and I should get to call Dr. Mind tomorrow afternoon. He said what I wrote is typically what people are saying before they come. I explained I didn't think about it in the right way until I was here and it didn't come together until yesterday. I am probably going to be going to an outpatient group daily for a month or so after I leave here.

Today's bad thing is that I came here for groups, help and things to do. Instead the person who does group is not here and so we have nothing. Some groups happen but today not one is on the schedule. So in many ways this is being in the hospital for the world's longest weekend, which makes me feel babysat but is missing something huge. I know that it may be hard to have someone fill in but every OT could do something meaning we could have an occasional group if they worked at it. I refuse to think nobody can do anything with us. I'm very disappointed by this. I am up, dressed, and occasionally talking to people but not like I needed. The doctor is lecturing me about needing groups etc. and yet they are providing none. Fun.

I still feel guilty, like my having my breakdown now may be some behavior related to Dr. Brain being off as opposed to what it really is which is I reached the end of my rope, moved to the place that they felt unsafe and now am coping with that. I have never felt like this before; it's just I'm overwhelmed and it feels like nothing really works with meds. I did not ask how long; he just said he'd see me daily through this.

Anyway, I should finish up on the computer. Lunch is soon.

2011-12-21T08:41:00.001-05:00

Next up: I have a tough day ahead with a big discussion with my doctor I'm sure and more being stared at and I am not excited. There haven't been groups thus far in the morning. I think the OT is on vacation. Please pray for lots to do besides color. There are 2 groups pending but one is nutrition (boring) and the other is sometimes good/sometimes not good. It's also going to be chaotic around here as numerous people are leaving. I'm glad as it will get quieter but it makes for a weird day. I'm arguing with someone about TV volume; our room is close to the lounge and it's overly loud. Great.

2011-12-21T07:11:00.001-05:00

It's kind of hard to know what to say, but you all say the perfect things so I'm going to say thank you and we'll come back to this. Love you guys

2011-12-20T21:18:00.001-05:00

I did give her the information in writing. I am now on serious suicide watch; not allowed to close the door or pull curtain. My roommate and I changed bed positions so she gets some darkness.

I had to do this. It is also so painful.

Gonna do something hard

2011-12-20T19:01:00.001-05:00

I have been realizing more and more how suicidal I feel and that I have a lot of really strong desires to stop fighting. I have no plans to hurt myself but I seem to be fighting the idea of making one. And I'm not sure anyone really knows how bad. My favorite nurse is working tonight so I'm hoping to talk to her later. If not tomorrow morning. I'll trying to talk to the dr. about it too but the nurses often listen longer, get more information and can share that with everyone. I am having so much trouble acting like anything is wrong and I'm scared I'll be sent home before it's really addressed if someone doesn't know how serious it is. This is why I'm here. It's ok to talk about it because that's why I'm here. But it's still a taboo-feeling topic. I think it would help even if I could cry but I can't. I want to and tears no longer come. I forget when I quit crying.

Tough day in my head. My niece called me (I think she had help) and that was great.

So tired of hating my life,

Jen

2011-12-20T13:57:00.001-05:00

Well, I slept a little more last night with a big dose of ativan. I was awake some but not as bad as it had been. Then they gave me a big dose of ativan to relax me and so I've had a nap. That nap was lovely. Stupid lunch.

I saw a doctor, not my doctor, who was really good about going through everything I've ever taken and finding something I could. I don't know how well this is going to work; it's a tiny Seroquel increase, decreasing my patch dose a bit (to see if it's agitating me) and adding another med that might make me sleepy. I don't feel incredibly hopeful but tomorrow my "real" doctor will be here so hopefully that will get new ideas if this doesn't work.

For now I've got 15 minutes to get un-groggy before group. Groups, by the way, one of things I needed to make me get out of bed, the person who does most of them wasn't here yesterday or today. I really hope she's not off all week. I need forced activity. And i fI know this and am aware and willing I really need it.

We'll see what happens next.

2011-12-19T17:30:00.001-05:00

The day started with a rainbow. No rain anywhere to be seen and a huge rainbow. I'm choosing to take that as hope.

There was a mix-up with intake requiring me waiting a long time (hours) before I got in here. But I did and presumably I'll see a resident soon and a doctor tomorrow and then we'll get going.

Right now I need prayers for 2 things: I need to cry. I also need to quit acting as if nothing is wrong no matter how crazy it is to do that. I need people to know I'm not well and I put too much energy and anxiety into hiding it.

That's it for now.

And the #1 sign you need to to the psych unit.....

2011-12-19T07:10:00.002-05:00

You wake up and think "wow, I really slept. I feel so good, Maybe this is a dumb idea". And then you realize you slept 3.5 hours and awoke at least once.

I'll keep posting from the hospital. Leaving in a few minutes.

Thanks for the prayers and support.

Nice

2011-12-18T22:43:00.001-05:00

Somehow that I don't understand but am pretty annoyed at Dr. Brain managed to arrange a Sunday admission and told everyone but me. I have sent no fewer that 4 emails asking what was going on and got no answer. Then a few minutes ago the hospital called to see if I was ok because I should have been there hours ago.

I AM SO ANGRY. I know she's sick. I know I accidentally kinda scared her last week. But for pete's sake that would not have been a hard thing to tell me and now I've lost a whole day of treatment that I desperately need.

So I'm going tomorrow as soon as I can get going.

Pray?

2011-12-18T20:24:00.001-05:00

I still haven't heard from Dr. Brain. Obviously I'm not going to the hospital today. Fine. But I have no idea what the deal is for tomorrow. The last I knew she was going to ask the dr. if he'd hold a bed for me then see how I felt Monday. I feel just the same now as I did before except for a lot more anxious if that's even possible. I have emailed, admitted that I was obsessively anxious and had no results. This leaves me with no clue if I really have a bed tomorrow.

The thing is that I don't know how much I said about this, but I was having plenty of trouble sleeping when 5 or 6 days ago I dreamed about killing myself. This is something that I think about but have control over. Dreams are not as safe nor are they controlled. I am still safe but I cannot relax to sleep more than an hour or so then I wake up, struggle to sleep, etc.

I've been mainly saying I need this to keep me out of bed and social. That part is true, and Dr. Brain knows about the dream although maybe not that it is keeping me awake. She does know I'm not sleeping much and that my anxiety is even worse than it was before.

I know she believes me. I suspect that the bed is there and she's been too busy with her own life to be on email much and therefore hasn't answered me. But I'm scared that tomorrow rolls around and I still don't know and something happens like the unit gives away my bed. I'm planning to wait until 10 AM then call Dr. Brain's office and ask for advice. I am not comfortable calling the unit because if they don't have a hold I'm going to sound crazy and then show up later with all these people who think I'm nuts. I think sometimes when she feels I'm pestering her she backs off and I probably have been but am desperate to know what is going on. If I had any other way to find that out it would be one thing but I don't.

Regardless, please pray as you get this that she will feel a strong need to contact me. It is 8:15 pm here at this moment. I've lately gotten emails from her as late as 11pm or 12 am. Please pray that she feels a strong need to touch base with me, a need she can't ignore. Pray that things truly are under control and the time I have to work so hard to stay together is limited. Once I hit that hospital it is safe to fall apart. Until then I am wobbling along, scared to let go off the control because of fear that if I don't fight to stay together that something bad could happen without my thinking carefully.

I made this worse by not realizing until I left Dr. Mind's office that this was what was needed, so I didn't have his back-up for what I was saying. I don't know he'd even agree although I think so. So what this all sounds like to her, I'm sure, is a panicked Jen who isn't very clear trying to explain what is happening instead of someone giving her matter-of-fact information which Dr. Mind would have if my brain had been working faster.

Please, if everyone prays then maybe something will happen. Sometimes all it takes is my starting to write something like this about feeling desperate to have help and she answers but even that is not happening today.

I'm scared. Not for my safety but that i won't get the help I need fast enough. Much more time without sleep is impossible to ponder; I've been there but never when I was already depressed enough to not be able to get out of bed without extreme efforts.

Praying and praying here.
Thank you

Ouch

2011-12-17T21:34:00.000-05:00

I just decided that I might feel happier or more relaxed if I watched the video I made of my wonderful day with my niece back in November. And it still is a great video of a great day. However it made me cry. Those days were hard and I was so tired and yet they were only a short period from being toxic and everything that has come after that. Those were the days that I truly thought I could work again soon. Now I can't even handle my simple job of waiting to hear from Dr. Brain about whether I'm going in tomorrow or Monday. If I don't go tomorrow I'll be able to see her for a while if I can make it down there. But I just need to get the going and signing in part over. Not strong enough.........

I don't want to be this brave

2011-12-17T19:26:00.000-05:00

Admitting before someone told me that I need help is a big, huge step for me. I've rarely if ever done so. I know that it is right this time but I really can think of so many things I'd prefer. I am basically forcing myself into doing many of the things I've felt impossible for so long now. It's scary. I want to cry but I have my emotions in lockdown.

I still don't know when I am going. I am assuming this means Monday but hoping not. Hopefully Dr. Brain gets back to me soon. I know I caused all kinds of confusion yesterday and am probably not her favorite person. I'd avoid me too frankly. But I find it really hard to just relax when I don't know what is going on about something this big and although my family is being WONDERFUL (I know!) I hate that I'm likely to be totally messing up Christmas. I hope that my mom will go down to my sister's to be with SOMEONE that day, or that she and my brother get together, something.

I am doing the right thing. I am doing the right thing. I am doing the ONLY thing. But it still sucks.

Learning curve

2011-12-17T10:18:00.001-05:00

My pulmonologist wanted me to change from the nexium I've been on for years to Zantac 150. I thought this was weird but dutifully tried. When I saw Dr. Body and he asked about the switch he looked skeptical and I told him, yeah, I know, but I figured I'd give it one bottle.

The last few days I noticed more reflux but figured my body was adjusting. Wrong. My body was telling me I made a mistake. Last night the reflux got so bad that it felt like it was going into my nose. I did all kinds of "don't do" things, like taking nexium, then 2 chewable pepcids. I had to sleep sitting up.

I now sound asthmatic and need to do a breathing treatment here in a minute. Not good because I do not need to be agitated. This also means I'm back on my steroid inhaler.

The hospital will put me on a stronger drug, Protonix. I already have a request in to Dr Body to continue that for a bit.

My mom sent an email gently saying I may or may not be able to come to the planned Christmas and that if I couldn't we'd re-schedule for the next weekend. I think they'll let me out that day, especially if Dr. Brain is still working. She covers Christmas and I don't know if that means she'll cover that day as well. I hope. I'd love to have her on my side for this. My mom handled this well. Thus far. It's a pleasant surprise.

I called her while she was skyping with my niece so I got to talk to her for a minute.. I couldn't hear her and she coudln't find me so it didn't work well. But cute nonetheless. I love being "Aunnnt Jen".

Nebulizer time. I suppose.

Accepted again

2011-12-16T16:22:00.001-05:00

I have been accepted to the psych unit. I will be going Sunday afternoon/Monday morning. I think. Dr. Brain was trying to change that from today to a bed hold until then. I dread it but I need this. I have barely been out of bed for anything for a month. I have not been well enough for the smallest things; I have barely even seen my mother. I have been too sick for too long and it's time to stop and be where they make me get up, there's social pressure to brush my teeth, I have to talk to other people, etc. The reason Dr. Mind feels stuck is that he can't physically follow me around making me interact and do things and that is what I need. I dread it because I feel safe here but I have to get past that. I also have to feel safe and to stop waking with panic attacks every time I do sort of sleep.

I just got back from Walmart trip 2 (I lost my wallet on trip one) and I think I'm going to break my rules and try to nap a bit since I was up all night and freaking out all morning.

what have i done?

2011-12-16T12:05:00.000-05:00

i emailed Dr. Brain that I think that if things don't improve I need to go to the hospital where I am forced to participate in routines. I also said that I really wanted to try to make it until the 26th at home, depending what she thought of what I said. I don't think she read that part. As far as I know she's trying to get me a bed as I type. I don't know if she'll make me do that or let me wait but there's a strong likeliehood that I'm going to the hospital. If it's today that's good because I'd likely be out by Christmas. It's not so good because nothing would really happen until Monday and hospitals are awful on weekends.

I wrote that thing a million times trying to not scare her. Seems I failed. Hope she gets back to me soon and says I can wait. Not sure she will. Gotta wash clothes.

one thing I know (edited for an error)

2011-12-15T23:54:00.001-05:00

I may not be doing well and in my heart I may doubt that anyone treating me cares anymore. I may feel totally alone, but there are people watching out and trying to help. And I need to remember that.

Dr. Mind and had quite a talk, one where I admitted that I am feeling worse than I am always saying and that I may sometimes be seeming better and feeling the same. This happened only because he thought I seemed better at the start of the session and I tried to give reasons that what seemed to be wasn't. By the end it was just that I sometimes don't turn off hiding it although I try with him to not do that. He pointed out I've done well before. I think he's a bit shaken still by the lithium toxicity we all missed and I think he also feels guilty that he did what I did and assumed it was the beginning of psychosis instead of sending me to the ER. We talked about some of my nightmares and how I really seem to be having a lot more PTSD in the mix right now; I think this is terror of what is happening and what has happened. I think I was a lot more honest acnd emphatic about that honesty. We talked about some of the trauma behind the nightmares. We talked about how extremely difficult a shower is. We talked about my guilt about now getting better. We talked about how time is loose right now and that suddenly it's almost Christmas and I thought it was 2 weeks off and that this scares me as it means the time until I return to work (in theory) is drawing nearer and I still can't stay out of bed. He didn't say a lot; I think I spent a lot of the hour thinking of how to answer just a few questions that were painful. But the end result was that he said what I've been needing to hear and I'm not entirely sure he knew until today: that he knows I am so, so sad and that I've very ill and that he knows I'm scared and that he can't make promises that I'll be going back to work in a month, or anytime soon at all, but that we'll get through it. Review of safety and we were done. That also can be things like everyone was asked to pray for me during my first hospitalization.

{ETA: the computer ate a paragraph saying that the counseling center where I go is a place I'm well known because I've been there forever, probably with one of the more profound illnesses. They've been kind beyond belief, right down to significantly lowering charges, making sure that if I need to see Dr. Mind I get in if at all possible, and just general kindness and respect. I was saying that they meet as a group to discuss difficult cases and seamlessly transition into...} He told me today he hasn't brought me up in there in a long time but that we were getting stuck so he did. He talked about how I need more things to do to get me out and how I need more support but that NAMI isn't an option as my local group is for people more affected than I am and we went so far as to contact the state level and nobody could find a group I could get to. One of the other therapists, one of the owners, offered her daughter who is involved with NAMI and may be willing to talk to me. So hopefully that will be set up fairly soon. I asked only that we actually meet in person, preferably when I am not going up there, so that I have another day I need to get up and shower and be human.

We also tearfully talked about what is becoming more and more obvious to me: I assumed for a long time that when things improved that I would go back to the routine I've had the last few years: up at 4, bed by 10:30 or so. I've finally come to terms with the fact that any sleep is going to be sleep we're happy to have if it is solid, without nightmares, and lets me truly rest. I was able to do the job I have because of that sleep schedule. I even pushed through the environment there making my asthma much worse (factories with some nasty chemical outputs), because I love it. I'm facing now that I will hopefully go back there but that I am very unlikely to be staying. I can't live with constant asthma attacks; I haven't had one in 3 months now and am not even using my steroid inhaler (ok'd by the pulmonologist). Dr. Body was impressed how clear my lungs are. I'm going to have to transfer or quit. The other problem is that not only is the job so far but it is the wrong direction. I need to be able to just see Dr. Mind if I need to. Twice a week visits are sometimes my reality with him (like for the last 4 months) and when I work so far away it's nearly impossible. I need to be able to see Dr. Body without needing a whole day off. I need to work where they are. So, sometime this year I'm going to have to tearfully resign/transfer from the best thing ever to come into my life. Coming to terms with that sucks, but I think it's true and not just depression true. It was good to put that into words.

I am going to try to spend nights in bed and at least a few hours on the couch every day. I can still lay down but it will be a new room. This was my thing and I'm going to try really hard to do it as I'm supposed to have something good by Monday.

I also told him that I want honest assessments next week as I'd rather find myself at the hospital Monday than for Christmas. I know I'm on the edge with that and keep staying on the edge and I don't care but I don't want to be in there for Christmas. Christmas is likely enough to be the last thing I can do and if I can't stay together then well, we'll deal.

And then I went to Walmart to grocery shop and did sort of ok wearing ear plugs, except I dropped my wallet in the parking lot and didn't hear it fall (ear plugs). Someone turned it in and I'll go get it tomorrow, hopefully with credit cards intact. Ugh.

And now I'm on the verge of more crying and must take pills so I think I'll do those 2 things now and talk to you tomorrow.

I don't know what to do

2011-12-15T14:26:00.000-05:00

I had originally planned to do a number of quick errands today: return some things, get some food, buy some jeans that fit, get new pillows (I usually wind up folding my pillows when I sleep which does not do good things for them. I buy lots of pillows. I never know if buying cheap ones is better than more expensive. The more expensive do last longer but I still ruin them faster than I should. Nonetheless the most recent somewhat more expensive ones have lasted a while (4 months or so) so I'm going to repeat that.

The thing is that I was up until about 3, am quite tired even though when I did sleep it was soundly, and I still feel sick. I really feel antsy though and want to leave desperately even though I know I don't have the tolerance. So that means filling some time at home and I don't know what to do to stay busy. I tried the logical step of sleeping but that didn't go anywhere. I need to eat but have no interest. It's a strange puzzle.

I like anti-psychotics

2011-12-14T20:02:00.001-05:00

I think that needs to be said. Jean made me think a great deal with a comment earlier today (2-3 posts down, sorry, too nauseated to search right now.) The point was that doctors aren't always the best sources of information. She's right but I'm fortunate. I thought I'd take a few minutes of trying to get get sick to explain some of the decisions I make.

This is true. I think how much depends upon the dr. Dr. Brain is different than most doctors and vastly different than most psychiatrists I've encountered. There are a lot of examples, including simply that she is helping me from her home while recovering from surgery; has given me permission to contact her while she was on vacation more than once; has called me just to be sure I'm ok on Christmas eve; coordinates with my other doctors (thus far at different times she's talked to Dr. Mind (constantly), Dr. Body (a lot), Dr. Sweetheart (a lot), numerous anesthesiologists, Dr. Kidney and also other psychiatrists. She has spent hours and hours trying to help me, plenty of that on her own time during these months. She knows the numerous issues I have and that things are never simple fixes for me. She knows how much demand that will put on her, but she doesn't stop. She's also blunt with me, something I appreciate.

Each med I've been on has been reached via a pathway that was created with certain characteristics in mind. Because during my pre-diagnosis years I was on 11 antidepressants and with the doses rapidly increased then the med pulled my brain doesn't like antidepressants much. Many people with bipolar are better off without them and at diagnosis with the guru I was told that was true for me. Yet after a few years it because clear that an AD was needed and we found one that worked, until it caused my blood pressure to be high enough to require meds. As a last resort imipramine was tried and by carefully messing with the dose I was on it for years. When the narrow line between too little and too much merged I switched to Emsam, which works better than anything else ever did. There are at the time a few tricyclics I've not been on but which are closely related to imipramine enough to know that they aren't worth trying. There are new versions of a few meds but they are all meds that I had bad reactions or irresponsible exposure to. I don't even want to try them and they aren't on the table. Even if Emsam had to stop they'd be off the table and another MAOI would be on.

I technically can't take 2 antidepressants now because of the MAOI. Emsam is actually such a different MAOI that unless you are taking the top dose (me) you can generally skip most MAOI precautions if careful. However, for one thing it works at a high dose. But antidepressants aren't kind to me and I wouldn't take a 2nd if that was the only offer I had.

Right now we hope that my depression will be controlled by the return of lithium. It seems reasonable since I was actually improving rapidly until the toxicity and the hold at non-therapeutic dose. We also know lithium is what controls rapid cycling for me thanks to being on and off it with the first toxicity. We'd hope something else might have taken that job over the years but obviously not.

However, lithium alone is not going to cure me at this point. In a couple weeks something else probably will be needed. Chances are good that will be an antipsychotic. It may be for a pulse (a short period I take it to see if it kicks things into the right place) or an adjustment or an additional med. This is fine with me. Antipsychotics fall into 2 categories for me; ones that work and ones that don't/cause serious reactions. Because I've had several bad reactions we know that each time I try one there's a decent chance it won't work. (This is also true for anxiety meds, antidepressants, seizure meds, etc.) However, I have learned a trick. An antipsychotic that works for me will work wonderfully. It won't have many side effects and most that it does have will be controllable. It will do more to keep balance than anything else. It will help with my ever-present anxiety. It will let me sleep. In all the antipsychotics that happen to work for me are life-saving despite the scary things that go with them. To acknowledge that by taking these drugs I'm choosing some bad effects to my health: weight gain (covered plenty this week), brain chemistry changes that can be permanent, increased risk of diabetes even without weight gain, increased cholesterol, etc. Jean said in a later comment that she is concerned about brain shrinkage related to antipsychotics, beyond that which goes with the disease.

I think I have a weird stance on that. I've been through enough to know pretty well that meds aren't kind to my body. I've already made decisions about lithium that could harm my kidneys and now further decisions to continue it when toxicity is more likely and every toxicity could be the one causing me to be on dialysis in an ICU. This last one was probably close to the level where that's a concern although my kidneys were strong and went into overdrive and have recovered fully within a few weeks. Long term results of that and that it may happen again? not good probably. But I made a choice to risk kidney function and potentially shorten my life in order to feel good. I still feel good about that decision. As far as the other meds, they have terrible side effects. But I can't survive without them. So essentially I am again picking quality of life over quantity. People with bipolar are already more likely to develop dementia. I'd rather increase that risk a bit than to live without the stability that only these harsh meds can provide.

We went a long time not knowing if I'd ever tolerate an antipsychotic. I failed the first 3 or 4 with nasty/sometimes dangerous side effects each time. Latuda's nastiness was nothing compared to a few years ago. But right now these drugs are the ones that let me have as shot at a real life. I suspect I'll be on 2 antipsychotics by the time I go back to work (3 if you consider lithium as one since it technically is). That's fine. I'd take nearly anything to have the gift of stability and if that hurts me later then we deal with that then.

I do admit that I find it hilarious that all these benign meds are things I can't take (cold meds, ibuproferon, aspirin, any anti-inflammatory, various other things) and yet I pour nasty meds in daily. As Dr. Body told me once he can keep me alive. He just can't keep me comfortable because the meds that we have today that allow that for the first time in history are all things I can't have.

Thank God I can have zofran though. I still feel like crap but I'm not nearly vomiting and I ate something that didn't taste good but did have nutrients. That is one comfort drug I'm so glad that I get a supply of because dehydration from vomiting is not good for me. Normally I wouldn't take it that soon but knowing why I felt sick I don't care.

Enough for now.

gak

2011-12-14T17:13:00.001-05:00

I restarted lithium last night per Dr. Brain. She thinks we have just discovered basically that this is the glue that holds me together. This was suspected and was why it wasn't stopped altogether. Some people have it stopped after 1 toxicity. After I had a hard time tolerating it for a while after the first one we stopped and a few months later had to re-start. When diabetes insipidus is diagnosed the usual plan is to stop the lithium. After 3 doctors went back and forth and I clearly stated my understanding that this may not be totally ideal for my body I was allowed to stay on. And after a 2nd toxicity, especially with numbers like I probably had it's rare to stay on it. I am going to have very frequent blood tests forever but the plan initially was that if I went several months and didn't need it desperately that we'd consider removing it but that it was more likely I'd need it and after those months had passed we'd try again. Now that I've fallen totally apart we are skipping the months to recover part and getting it back. Thus far I am sick. I am trying to not take Zofran right now but suspect I will as nothing else I'm doing helps and not vomiting is for my benefit with the patch and my constant dehydration not matter what issues.

Regardless, I'm back on 1 whole lithium pill (instead of 1/2) and I'm sick. This is expected but it is not fun. It would be easier if it improved my mood immediately but that's not happening.

New plan

2011-12-14T01:36:00.000-05:00

I got a much more coherent email from Dr. Brain. We're going to get my lithium level up now instead of waiting as planned. I already took the higher dose. I also was able to ask about anxiety meds, anything that might do better than the useless klonopin. I hate to lose Klonopin, it worked well but it's done for now.

I also was able to ask if I did have encephalopathy (I don't know if I told this story; the psychiatrist from the bad hospital stay said I had this as a defense to why he treated me the way I did; I was confused. I know I had sx of this, but I did not know it was diagnosed. It wasn't on my d/c papers nor was it mentioned to me. I think he's using it to cover for his bad behavior). However, I also still have cognitive side effects and the occasional neuro thing so maybe I did. I just want to know so that I don't panic about any changes in the next 24 hours. Obviously there are changes and CHANGES but I'm scared enough that I missed this before that I'll be being very, very careful for a long time.

I also realized I have a bottle of zyprexa sitting around that I paid a lot of $ for and only took for a few days. So I asked about doing a pulse of it to see if that will trigger some stability.

I'm less scared by myself tonight. I can't settle down, mainly because i need to cry and can't, but I managed to ask rational questions I think clearly. I hope. And the anxiety med thing is HUGE.

I'm suddenly sleepy. Not ideal since I just took more meds to sleep because I was so awake. Oh well. Nothing planned tomorrow anyway.

Comments are good

2011-12-13T22:47:00.001-05:00

So sometimes a comment makes me think so hard that it's easier to just paste it in and discuss. B. posted this on my last post. I'll say first that her perception and mine are so different. I feel like barely making it implies barely trying. I don't get out of bed anymore unless I have to be somewhere. Today I made myself wear sweats and a bra and go to the post office and I wore the "real clothes" until I splashed myself with water making dinner. I'm going to post the comment and answer it, but the thing is I feel like I am getting nowhere and therefore I can't be trying hard enough, yet I don't know how to try harder. But I also know as long as I stay in bed I'm not doing everything.

Anyway, answers are in italics.

Anonymous said...
Jen, why do you feel that you are at fault?

Because someone has to be? I have to be doing something wrong or I would get better. That's always how it's been, if I worked hard and took meds I got out of the bad episodes. I've never been this unresponsive to treatment.

You ARE trying.
You have BEEN trying.
And, you KEEP trying.
Just what is your fault here?

I feel like I am not doing enough, not living up to all the extra time and effort I've been given by each of my doctors. I know enough to be suspicious of anything resembling lithium toxicity and I was so oblivious I hallucinated. I haven't talked much about how traumatic that was and how terrifying; I was positive that I had advanced right into the next level of horrors. I feel like I'm not trying enough. There are things I don't do, things that might help, like going for a walk every day, or trying to get out daily. Granted I was doing that for a while and then got worse but now I don't even try. It's a good thing my bed is memory foam because if it weren't there'd be nothing to my mattress but a mold of my butt. There is something I'm not trying because things aren't changing.

Are you not following doctor's orders? No.

Again, I am doing most of it. But I have hit a wall with the doing things/leaving home/exercise thing. I am not seeking people or support from anyone not safely within my computer.

Are you doing things you are not supposed to do? No.

Again, I'm doing mostly what I'm supposed to. But there are things I could theoretically do better. For one thing getting out of this bed might help me sleep better. Exercise surely would. Relaxation things that overwhelm me would probably help. I couldn't even do a yoga more or less lay still and breathe thing the other night because I couldn't focus. I probably should have my computer off now since the light can make sleep harder, even though I'm not remotely sleepy. I probably nap too much. Napping is bad. But I can't help it; it's hard enough to stay awake after 3 pm at the latest, aiming for 2 pm or earlier. Yet up for the day means a shower sometimes, getting dressed sometimes, eating, feeding cats, computer time, knitting, TV (which is because I'm forcing noise into my life more than pleasure), a trip to the post office sometimes, trying to read, and appointments. That's about it. Cooking is a joke. Housework is straightening and laundry only. I'm supposed to try to keep life relatively normal and this is a bare minimal attempt at that.

Are you giving up? Hiding? Isolating yourself so no one can help? No. No. And no!

Giving up? Maybe. I think that's why I don't want to leave my bed. I find myself wondering if the doctors really are helping, try as they might because I do keep going and I keep getting worse. It is very hard to impossible to believe this will end at this point. Isolating? If you aren't a doctor you don't see me. I did spend a few hours at my mom's last week but that was also insomnia related. And it truly feels like nobody can help so it's getting harder to make my minimal efforts. The doctor I'm allegedly going to see is a big deal. My doctor is amazing and she respects him a lot. But I have very little hope that he can do anything to help. There are a few meds left. There would be pulling Seroquel and starting over. That terrifies me. Mostly though if Dr. Brain feels she doesn't know what else to do I am pretty sure I've exhausted all normal options.

So, why is it YOUR fault? What is it you are failing to do? From over here, it looks like you are trying really hard. Harder than most anyone would try. The opposite of failing. No fault on you!

Thank you. It feels like I'm trying hard but the effort goes into standing up and turning off the ceiling light; making simple foods; remembering my fluids. I don't have the ability anymore to TRY and make my mood better, to TRY and leave the house for more than 5 minutes (post office), and not into doing things I'm supposed to do to help relax or to make my body get well.

Trying to be a voice of reason,

I think you are. I just can't believe it or anything particularly positive about my role in this anymore. I harrassed a sick person into emailing me. I thought I was being assertive and desperate but now I feel terrible. Everything is about me, me, me. That's not how I believe in living. Yet I look at my behavior and it is so self-centered and inward and it makes me hate myself even more.

I do know that the illness is causing me to feel this way. I just no longer know exactly how to fight back and win and I've lost so much I no longer have confidence in my ability to do this. My logic is leaving. I was sure that I'd hear from Dr. Brain at the same time tonight as last night when I heard nothing all day. Then I was disappointed as if she had promised to be in touch well, ever.

I know she is not feeling well in all probability but I also feel like I'd be the patient she most would not want to get entangled with. A phone call at this point would require 15-30 minutes of discussion. An email can't really help. That's especially true since I turn everything into a negative in my head. I see that I do and I can't make it stop. My brain is too engaged in the very basics.

I'm reaching the point that I hate my life so much. I am not going to hurt myself, I just hate it. I hate being me. I had feeling bad. I hate the treatments not helping. I hate the side effects, like the inability to just really cry (last night as exception). I hate knowing that somewhere a panel of people is discussing whether I should be able to keep my job. And hating my life makes me feel I don't deserve it to improve. There are so many worse circumstances in the world and I'm sitting her complaining because I'm immeasurably sad and anxious? I have food. I have family, weird though it is. I'm not being mistreated. I'm able to pay my bills and buy expensive meds. And I don't care. Which makes me feel even worse.

See, B, you accidentally jumped into my crazy mind loop. It never stops. I can outwhine anyone. And tomorrow will be just like today: wait for a phone call that may not come with an appointment I pray is soon. It's possible that as Latuda leaves my body I'll feel better. I am hoping for that although it is not really likely since it probably had no more than a placebo effect.

Thank you for caring.

B.
9:10 PM

no title in my head

2011-12-13T18:22:00.003-05:00

Well, the jerk didn't decide to come back. This is good, although I could use someone to yell at today. It feels like I've spent half the day on the phone. Something I ordered from Kohls on Black Friday got lost at their warehouse. I learned a valuable lesson; they won't off things but if you ask you'll get them. I got a new one shipped out with priority airmail delivery at the Black Friday price and no shipping cost. I was on the phone 35 minutes to do that, but it's worth it.

I haven't heard about the 2nd opinion. I have no idea when to expect to hear something. I am hoping that stopping the Latuda tonight will stop some of the symptoms. If not by Thursday I guess I try to find out from Dr. Brain because if he's not able to see me (and this is a very busy time for psychiatrists) then I'm going to make a case for admitting me. If nothing is changing from today I don't know if I can make it through Christmas without being admitted. I've said this a lot of times though and been wrong. However at this point I need a psychiatrist and the thing that usually keeps me out of the hospital is Dr. Brain and she can't do that.

I spent time on the phone with the ombudsman about my recent stay. I heard both doctor's responses; both defended themselves on minor points and ignored the major complaints. I heard things like "anxiety meds are not good with encephalopathy". I had encephalopathy? Nobody mentioned that. Nor did anyone mention that anxiety meds weren't good for me; I would have sucked it up then. I declined filing a formal complaint because I can't imagine that any complaint from someone with a diagnosis of confusion is going to win against a head of a department. Mostly the psychiatrist made everything out to be my fault. He did admit to walking out while I was talking and attributed that to being busy. But um, "ok, I understand your concerns. I need to ask you some questions then we'll fix those concerns. I have limited time today", although even that would be pretty crappy given how long doctors spent with my roommate.

The drawings are helping some. I forgot that I like art therapy. I think I have enough to keep us busy for 2 sessions though.I think we have 2 sessions worth on "I feel so guilty because everyone keeps trying to help and I am failing".

That's about it for today unless Dr. Brain gets in touch.

surprise

2011-12-13T00:39:00.001-05:00

So it turns out that Dr Mind is right and drawing did help. It kept me awake a lot longer than I should be, but that was crying too. Crying is good. I need to do that.

Now if I could just draw that cat instead of a pictorial representation of my overwhelming guilt at not getting better, repeatedly spread over 14 months.

Finally Crying (but not because of the jerk)

2011-12-12T23:59:00.002-05:00

I heard back from Dr. Brain. Based on her writing she's having pain issues. She's not even going to try this; she's sending me to someone else. Which is fine, except that this was initiated then stopped 2 weeks ago and in the meantime she told me she could handle me while she's recovering and then she can't. I do get to stop "Platituda" after tonight and if the other doctor can see me then his secretary will call to schedule. I have no idea when that will be. I feel awful because I have been sending emails every few days because of having no way of knowing if she was overwhelmed with emails and not getting them, not getting them period, or too sick to care. I'm guessing too sick to care and that makes me feel horrible. I wish she'd just had someone cover for her with me then I wouldn't feel so guilty now. I mostly feel selfish and demanding. She said nothing to imply this but the fact she answered the email I sent a few days ago says she's just now looking at email. This whole 2nd opinion thing also feels weird. She told me it's not a bad thing, that if she doesn't know she sends people out and it's not a personal insult to her but just that she's looking for other ideas. I feel like she feels I'm arguing with her and I think really it's that she needs someone to more closely supervise whatever happens. I just have reached my limit and now I have new things to worry about. I still kind of prefer my idea of admitting me and letting them do whatever, which she said a few weeks ago she would do if I wanted but she thought it could be done outpatient. Thing is that I'm kind of really worrying myself now.

The biggest thing is I feel completely guilty because I am constantly needing something from someone. Dr. Mind has to see me twice a week, which may be 3 times this week if I don't calm down and can get in. Not what I want but this guilt thing may need to be discussed. I'm seeing him constantly and saying the same things. Dr. Brain spent extreme amounts of time with me last week, like 4 hours plus had at least an hour of paperwork that had to be done for me and I still can't make it 10 days without her. Again, constantly saying the same things. And Dr. Body I'm constantly trying to verify things so I can stay physically healthy enough to have a clue how I am psychiatrically. Even then in my confusion and fatigue I never thought to have him do neuro checks on me which would help know if the lithium is gone, assuming we knew what the initial results were. I know some but not all of it and what I know was because I could tell from being on the other end of the test. I just feel like I have these people who are all willing to do so much for me and I keep demanding more and "that's not good enough". And I basically know that is not true, except it is true in other ways. I AM needy right now. I have been very needy for a very long time. And that's hard when you are the provider because you feel you've done everything why is nothing changing? If I were my own patient I'd have to stop treating me for lack of progress. I know they feel bad for me. I also know they have to be frustrated.

The other reason I cried is somewhat dumb. Remember when my mom's cat died? Well, I had this great idea. Several years ago I found someone on Etsy who does prints of pets. I bought a generic of each of her dog breeds and they are perfect. The person gained a lot of recognition since then and got expensive. I was willing though to pay the money to have something really special. The only problem was that I had a hard time finding pictures of Gypsy. I sent what I had to her and she said she could make it work. Last week the print came and it was all wrong. I felt horrible but I need this to somewhat resemble Gypsy, who was, well, this is Gypsy:

She was beautiful but complex. Again, I brought this up. And she said she could do it. She had to totally restart with the proof because of the changes from last time. She was a bit snotty about that. Tonight she sent proof #2 with a notation that it's very hard to do this because of the lack of good pictures. Hello? I specifically asked about that. And while clearly I don't expect accurate representation of her coloration she has her as black with beige/brown splotches. Those need to be more caramel in color, and that wasn't fixed. I am really upset because of the asking about the pictures thing and because I wanted this to work and I don't think it's going to. I did speak up for myself, saying that I was a little confused why it wasn't a problem before she did it and reminding her that I'd even found pictures of similar cats to help with the redo, but essentially I spent a lot of $ and am not happy and probably am accepting this as is because I don't want to deal with her anymore. She was snotty another time when I asked her what the status was. Some auto-email that explained her process never was received and so she acted completely put out over that too.

This is especially hard because I miss her and wanted this to be a nice thing for my mom, not a "ha, look how I wasted my money because you'd have to squint to guess this is her." I was planning to do this for my 2 cats but certainly will not be now.

So frustrations abound and that's before both my cats have been sick and my older cat is being really picky about eating, then misbehaves because she is hungry. We have a regular smorgasboard going in there and I think she's ok now but scared she'll have eaten too much and puke again.

I am so tired and so overwhelmed. I tried to apologize to Dr. Brain; it probably is even worse now.

My problem is that I do not want to be me. Perhaps I'll draw that. Dr. Mind has decided I don't draw enough. The sad thing that I'm serious about drawing. Whatever might work.

The wrong day to pick a fight with me you jerk

2011-12-12T20:16:00.002-05:00

I got home a little bit ago after finding out that Dr. Body could find no reason for my feeling crummy, backed up by yet more labs (things to watch after toxicity), the need to go buy (this is actually ironic given what is coming here) some larger shirts because mine aren't fitting so well right now because the so-called "nearly weight neutral" med is not for me. I desperately opened email, praying to have something from Dr. Brain. No, instead I had numerous comments from a post from 2007. Specifically, this post. You'll have to follow the link, I can't summarize it well.

First, commenting nastily on a post from four years ago strikes me as having nothing nice to say and looking for something to attack. Second, judge not lest ye be judged? Third, if you (jerk) read on you might notice that as my meds were adjusted and I wasn't taking huge doses of meds that cause weight gain in nearly everyone who takes them I went on to lose all the weight that I was discussing in that post. Fourth, before you attack someone, please know who they are.

You (jerk) obviously want a reaction. Now, considering that I'm about ____________________ far from being suicidal and not much further from needing to be hospitalized for depression, I'm so glad you felt that picking on me would help. Thank you. You truly made my day.

So, since you obviously want reactions, you can have some. Jerk.

so, why not make a lifestyle change? what about people who are healthy and take measures to take care of themselves? should we be destined to wear fat clothes because the majority of our society is fat? oh yeah, that makes sense. if you're fat, do something about it. stop blaming and complaining, it does nothing, and oh yeah, your fat will still be there. geez. i feel bad for all the kids suffering from child abuse at the hands of all these ignorant, lazy, fat parents.

Had you bothered to read this blog you might have noticed it is about being bipolar. I have difficult to stabilize bipolar and most meds to treat bipolar result in weight gain, often a great deal of it. I eat healthily but my body's metabolism if affected. This is clear that when I go on certain meds I gain weight and when I go off them I lose weight. At that particular moment I was on about the worst combination of meds for weight gain I've ever been on. That I did not gain MORE weight was impressive. As for what I wrote it was mainly saying that I couldn't find clothes that fit because my body size didn't fit available sizes and that this seemed odd since I'm not the only person to be short and heavy. If you read anything, jerk, you'd know that I live in an extremely rural area and don't have many options. Our stores are also smaller than city versions and I have trouble finding short sizes even when I am a size 10. Or 6. I've been heavier or not depending solely on medications for a long time. You assume I've always been heavy. Until psych meds I was a scrawny 118 lbs. Did I blame anyone? No. I do now point out that medications were to blame, but that's the simple truth. Did I complain? Only that I'd like clothes that fit. As far as child abuse, let's talk child abuse, because this is where you become INCREDIBLY INSENSITIVE JERK. I can't HAVE children because I was abused. And if I were I would bring them up exactly as I was in terms of food: I did not know candy existed until kindergarten. I love and have since I could eat vegetables, fruit and lean meats. My favorite food at age 3 was broccoli. I was abused but I age healthily. My weight has nothing to do with my parents, it has to do with medications, jerk.

EATING WELL AND BEING ACTIVE A LITTLE MORE THAN NEVER is found to have essentially no negative side effects. Maybe you should ask your doctor if {edited from profanity to say that perhaps you should ask a doctor about exercise} or you guys can continue to eat yourselves to death while waiting for some "magic" solution that fits your fast,cheap,easy American lifestyle. Obesity kills-- although it is an expensive way toward population control.

I am quite likely to eat more healthily than you do. I exercise and have a job that requires a great deal of physical strength and a high activity level, even more so back then. The only magic solutions I seek are 1) better treatments for psych issues 2) clothes that fit. What do you know of my lifestyle, you jerk? Obesity kills a lot slower than suicide. That's the reason it's better to take psych meds than and possibly die earlier than not taking psych meds. For me at least, it's an individual choice. One of my meds beats up my kidneys as well. I may eventually die younger from kidney failure. I know this and have made decisions accordingly and will continue to do so as needed.

Obesity screams lack of self-respect. And if people can't take care of themselves...well, survival of the fittest speaks for itself. It's not up to anyone else but yourself to decide how long you want to live. Oh let's scream genetics all day long-- DUH, YOUR LIFESTYLE CHOICES determine to a large degree HOW your genes develop. Quit coming up with excuses to make yourself feel better...that time should be spent figuring out how to take control over your life.

If you are such an expert on this then why don't you have the self-respect to sign this series of nasty, out of the blue assaults? Why don't you use your expertise to develop weight neutral psych meds that are well tolerated and effective? The experts in these diseases have been trying without much success but I'm sure you are smarter than they are. I never mentioned genetics. Although I do have individuals who are overweight in my family, most are not. I was not overweight in the slightest until psych meds, and I attribute my weight issues to my psych meds. If taking meds to stay alive and able to contribute to society (versus sitting at a computer and being nasty to a stranger without reading background anonymously, you jerk) is a lifestyle choice, then yes, I've made one. On the other hand we try hard to keep me on more weight neutral meds because I can maintain a healthy weight on the meds I'm on now but if anything is added that causes weight gain then I gain weight. I do indeed determine how I live and I take much more control over my life than you are likely to do, you jerk, by taking meds that do have harsh side effects and don't always make me feel great. I have no excuses. My meds cause weight gain. Most psych meds do. I've been on nearly 50 of them over the years. There are consequences. They are worth it.

So, jerk, you got your reaction. You got it simply because perhaps someone else who is attacked like this can find support. In the meantime, this blog is about bipolar disorder and if you care to contribute to that then do so respectfully and you are welcome. Otherwise go away and don't come back. Further comments will be deleted.

Oh, and good news. Right now I am far too depressed and emotionally turned off internally for you to hurt me. So you didn't even succeed. Now, I am going to turn around and try to get help for my psych issues.
Next time you attack perhaps you should check out the context of who/what you are going after. Of course being perfect you have nothing that is out of your control in your life. Right. You jerk.

Not sure what to say

2011-12-11T18:47:00.001-05:00

Oddly enough I was thinking that I didn't want to update because it seemed likely to make me cry when I got a request for an update. So here we go....

I haven't really been out of bed in 3 days now. I doubt I've been out of here more than 30 minutes at a time in all that time. I want to cry and can't (probably a side effect). I keep praying and waiting for Dr Brain to answer and each time an email appears I jump. Sadly, they usually are just from Old Navy.

I think the worst part is that this feels almost normal now. I've felt so bad for so long that expecting to feel good is a big challenge. There is no doubt that this is becoming depression that needs treatment. So what's new? I know "Platituda" is just not working. I know that this is not my fault or that I did anything to make it not work. I don't have a high chance of things working. "Platituda" is just not going to be my med. I set myself up, as I usually do, by thinking an initial response is meaningful. I know better, I just really am out of practice with med changes.

I'm having worse anxiety too that doesn't help. Tomorrow I see Dr. Body and if I haven't heard from Dr. Brain hope that he at least can help some with that. This visit is so likely to be a waste, but I need to know that it's not physical and that I'm not ignoring something important. That's the lesson of the lithium toxicity. I still don't think a single one of the symptoms I was having was enough to make it combine in anyone's mind as "hmm, this isn't quite right", but at the same time it terrifies me that I missed it so thoroughly.

Last night was bad. Between my own sleeping issues and my cat having a bad night despite medicating her, having her exercise in the garage a few times, etc. I didn't get nearly enough sleep. Also not helpful. Today has been extremely anxious, probably because that was how the night went.

Tomorrow is going to be hard with Dr. Mind. I hate having to admit to him that I've gone so far backward in a few days time. I hate that we're going to be back to talking about am I in a safe situation, etc. But we are.

I don't know what percentage of this is my simply needing to feel we're doing something and not having that. This is why Dr. Brain wanted me better before she had this surgery.......But it is so hard to be so sure that something has to happen and have no way of ensuring that. If I went to the psych hospital ER I could get admitted. I truly have no desire to do that. If Dr. Brain wants me in there to try a new med combo that's great. I don't want to just show up as "I'm lost without Dr. Brain and don't know where else to turn". Yet if I have to go in I want it over with. (May need observation to start another med).

I am just not good. I've reached the point that saying that is almost embarassing because I am so tired of hearing myself say it, but if my mood was at a 5 at it's best I'm back to a 3- or 2. And I have no idea what to do. Hope Dr. Mind does or that Dr. Brain answers soon. I'm strongly wondering if she's having email at home issues. That's happened before and would explain why my before-her-surgery-pretty-important-questions didn't get answered. Who knows.

Not good

2011-12-10T16:30:00.001-05:00

This morning I woke up at 4:30, presumably with a nightmare. It finally has occurred to me that now that I have my cat comfortable enough she isn't waking me constantly that when she does wake it is always coincidental to my having had a nightmare. I must yell or thrash around or something that wakes her. So I couldn't get back to sleep and spent a few hours curled up in the dark doing nothing but thinking. I realized that I am feeling a little more depressed each day and that it was better to try again to reach Dr. Brain than to sit and wait to see if she happens to get the earlier email. So I sent her another one, trying to say this is getting worse please make it stop but without being too dramatic. My current fears are first that this is deteriorating. I am more depressed every day now. The increase in medication should have worked by now and it has not. I can feel the hopeless monster grabbing at me and finding it hard to argue with that monster, especially after spending part of the afternoon also staring at a wall along with my morning fetal position time. I feel there is pressure as well, because we have a certain amount of time to get me better and that's it. Well, there's long-term disability but I don't want to go there. There's also Christmas approaching rapidly and that means stress. If I go into the next few weeks feeling bad I know from experience I"ll come out the other side feeling really bad.

I don't know what happens from here. I don't know if that's why I'm not hearing back; the next obvious choice has potential issues and while I told her I've read about it and am willing to try with monitoring I don't know if she ethically can do that. I'm afraid she feels worse than anticipated and just can't check email or that her work email isn't working at home. This is the downside to not having someone cover me; if she isn't able to help then I have no way of knowing and no way to make decisions. She could be consulting Dr. Mind which isn't going to help a lot since I'm worse in the 2 days since I saw him.

I just want this over with. I am so very, very tired and also so very tired of not feeling well. I'm tired of fighting to stay awake. I'm tired of the color of this room, one I never liked but absolutely HATE now. My Christmas wish was for a day or days of help from people who aren't asthmatic and can help with painting, etc. If anyone comes through on that this room is going to be the first thing done because I hate it so much right now.

I'm also tired of whining. I'm sorry.

11 years, 3 weeks, and today

2011-12-09T19:54:00.001-05:00

Eleven years ago today a dream of mine came true. After practicing writing Jennifer ****, OTR/L when I needed hope for what seemed like years and accomplishing only being allowed to write Jennifer *** OTS (OT student), I graduated, earned my master's degree hood, and lost my S. For the next few months I was Jennifer ***** OT, the Jennifer **** OT/LP (Limited permit; until my board results were through), then the bulky Jennifer **** OTR/LP (passed boards, awaiting state licensure), and finally Jennifer ***** OTR/L. I had no idea that day that my academic career was ending; I was pretty sure OT would only be a profession of mine for a while before moving on to something with a PhD. I also had no idea that by the time I was able to take my boards, in March, I would be on the wild and crazy ride that was my emotional state until Nov. 2009 when I finally stabilized for the first real time. I knew something wasn't right. I had no idea that it was more than a malfunctioning antidepressant.

Three weeks ago I was in the ER waiting for labs to come back and wondering why everyone kept repeating the same questions about could I maybe have accidentally taken some excess lithium, was I sure I was not feeling anything that resembled toxicity symptoms, and praying that it was toxicity. I kept thinking of the luxury of a medical room and the less restrictive life than the psych unit where I'd go if I wasn't toxic. Ha. I actually have been much more mobile and content during both of my psych stays than I was in that medical room, and I didn't like parts of those psych stays much at all. I was vaguely aware that I wasn't doing so well with some of the neuro testing, although the test where I finally got it was yet to come. (There's one benefit to doing these tests on patients; you have at least an idea of what your outcome is).

Today I've remained exhausted. This was expected as yesterday was a huge day for me. I did manage to drag myself to the post office and discovered no paycheck (I didn't really expect it but thought there was a chance). That's the total days' activities; I haven't even eaten much because I'm just too tired. I feel down today as well. I think I hoped that admitting yesterday that no, this isn't feeling as good as it should would lead to some action that would help. But Dr. Mind basically just agreed, and I haven't heard from Dr. Brain, which worries me. I am afraid that this means she is still not doing well after surgery and while mostly I want her well, I also am terrified that she can't handle helping me during this time which is a huge issue since someone needs to and if this med is not going to do it we need to do something different very soon if it is to have enough time to work. Or, if we are increasing the dose, we need time to be sure that if I have askasthesia from it that I can recover from that. I know she's help as soon as she's able, I just never asked how I would even know if she was not able. I did finish making a calendar using all of the professional photos from our shoot in April. My niece has changed so much! She was a baby then, only 9 months old and next week she'll double that. Not to mention the walking, talking, hugging, kissing (on both cheeks; she's vaguely European apparently), etc.

My bed is a mess. I have not felt like moving to the living room today and so the bed contains my bag of dry mouth candy, a nook, 3 knitting projects in different stages of completion, instructions for knitting, my knitting bag, my cell phone, my real phone, DVD/tv remote and for some odd reason 2 boxes of tissues.I kicked the blankets off in the night so this is making it an ideal new sheet night. I also have to shower and get my patch on; the last two haven't stuck for some reason (and I did bathe, I realized what that sounded like :), so I am going to have to do the "patches won't stick" skin care and hope that getting rid of the dry skin stops the problem. The last 12 mg (I alternate 9 and 12) patch was a problem because I forgot that it is big enough that if I stick it where it has to absorb too much movement of my arm it comes off. The 9 can go in the same place without a problem.

Now if I only had the energy to even clear off my bed.........

wow

2011-12-08T22:07:00.001-05:00

I didn't find out until after the last post that my brother-in-law was bringing my niece up for the day. So I kept trying to get to sleep to rest before what I knew would be a big day, but my 5 AM nightmare was it. So I've been awake longer than I have been in a long time. I also did so much. I have all my Christmas wrapping done except a few little things that aren't here yet. I did the wrapping for our Secret Santa kid. And I played with my niece and enjoyed her so much. I suspect this trip was really planned so I could see her but nobody would say that, presumably because that way I didn't feel bad if I couldn't go. It was fun but it was so exhausting that I kicked into manic and am only a little slowed down after seeing Dr. Mind.

It's amazing to see her grow up. She's starting to lose the new walker "zombie walk". My mom chose a really unique grandma name and "Anne" has been calling her something else nobody could interpret. Today she used the grandma name several times. Her real name is beautiful but is one that she'll be older before she can say it. We often use a nickname and she's calling herself that as well as the nickname her Daddy gave her, presumably when she could only say that. I was upstairs in the loft area for a while and she was in the living room and would hear me move around and pause to say "Aunnth Jen?" and I'd go wave or blow a kiss and she would giggle. We played "up" and "down" with me lifting her on and off a chair over and over and over. She bit my mom kind of hard and tried to bite me when I changed her diaper but I moved fast after seeing my mom's hand. Definitely becoming a toddler with a temper. We gave her a bath and she used sign to request a song that I haven't sung to her in a few months but which her mom sings differently to her frequently. She answers everything with "yeah!". Her language skills are taking off; she was ahead anyway somewhat but I heard one 3 word sentence today. If she were more clear I think her speech would be amazing but she is not always clear or substitutes sounds and that makes her get less across than she is aiming for. I was a very, very early talker and at her age (nearly 18 months) was talking in full sentences consistently; my mom says at 2 years I was using paragraphs correctly. In a way that's a sad thing for me because memory starts when verbal skills hit a certain point and I have memories that I had no way of knowing even what they were from until when I was in my 20s I mentioned it to my brother who figured out that I was 8 months old, remembered details correctly that nobody would ever have told me, and was accurate. The problem is that I remember that abuse very early too, probably more like 11 months, and a few more years of protection from those memories would be kind. Although I admit that it helps to know that while my brain has blocked some things I have a pretty clear idea of my past.

Dr. Mind and I talked about my feeling that the attitude drug is only partly effective. He seems to agree that I'm still in a place that's not good enough and that my summary that it did the initial thing and then leveled out to nothing spectacular is accurate. So hopefully Dr. Brain will get my email and have ideas. We talked about my nightmares that I've had a lot of lately (since the new drug) and he told me the one that is why I've been up since 5 is a flashback, not a nightmare.

My disability came through finally. They approved only a few weeks which is fair but also a bit difficult since Dr. Brain is working with me via email only right now. This leaves her without in-person progress notes to back up anything and also she has to take my word for how I'm doing at that point. I'll also submit Dr. Body and Dr. Mind's stuff then and hopefully that will piece together enough to get me until she's back in 3 weeks. I'm just glad to have money to pay bills coming.

Really hoping to just fall asleep in a minute here......So tired........So, so glad I decided to wait until Monday to go see Dr. Body.

Halfway, then random

2011-12-08T08:52:00.001-05:00

I am getting very confused about the new medication. It works for 50% of what I need and then stops dead. I am not suicidal and that's directly from this med by all appearances. My depression is definitely better than 10 days ago when I started and sleep is somewhat easier some nights. Otherwise, not getting much from this. I know a lot can happen after 10 days but this seems to have achieved it's flying "laltitude" (haha) and it's not right. It's better but it is not right. I am allowed to contact Dr. Brain now but am not going to until I have my check-up next week with Dr. Body. If he has no cause then I think it's time to figure out if this is helpful. Time is running out if I have to do a hospitalized start on another med and don't want to be there for Christmas. I'm concerned that could happen because the drug she really wanted to use but couldn't because of a potential Seroquel interaction would have to be a more real choice and may need frequent EKGs to be sure that it isn't causing arrthymias. Even waiting until Monday has issues. I suppose I really just just do it and she'll read when she can.

I'm feeling guilty everywhere. I had a Christmas gift ordered that is a Etsy one of a kind thing. I had to ask them to redo because it's not "right enough". Again, feel awful.

Anyway, back to trying to nap. Not going to happen but oh well. Actually first write to Dr. Brain. then try to nap.

Good stuff

2011-12-07T18:20:00.001-05:00

Labs: good. Lithium level is barely existent, as desired. My other labs were completely, this emphasized, normal, so the last ones must have still had some borderline results.

Dr. appt: Scheduled. And the timing is perfect. I'll see him and then see Dr. Mind and be home early still. That's for Monday. I added time for the lithium level to take a few days and apparently they no longer do. That's ok. I don't expect him to find anything, I just need to be sure there's nothing obvious behind how I feel. And the last time I was really checked out was in the ER; the hospital dr. may have listened to my lungs but that would be it. I probably will finish my chicken pox shots then too; I have put it off because of concern of putting more chemicals in my body but it needs done and saving myself a trip will make it more likely that I'll do it. Plus, what's one more needle stick at this point?

Baby hats: I don't know if I explained what all those hats were for. They went to String of Pearls, which provides support to families who are carrying a baby with a fatal prognosis to term. One of the things they provide is a keepsake kit and the hats are part of it. When I contacted them they said they needed anything from preemie to newborn as the hats will go to babies born at 32 weeks or beyond but can be very small. Last week I sent 34 hats with a lot of trepidation because I am a new knitter, am loom knitting, etc.. Today I heard from the director that she already has sent 2 of my hats out today. That gave me a sense of actually being able to contribute to society that I have not had in so very, very long. The hats are just a small thing, literally, but they are something for good. Sleeping and seeing doctors is so far from doing something good that this makes me incredibly happy.

I also had a better timed day today. I was up until too late and had to take extra meds to sleep, but I woke around 8 and got ready and went for my blood draw and came home and "wrapped" (mainly put tissue paper around) my niece's Christmas presents, and then slept for 3 hours. I slept hard and feel like I actually slept soundly. I am not sure I've been doing that; I'm sleeping tons but I never feel rested.

Now I need to throw some laundry in so I can aim for an early bedtime because tomorrow I get to see my niece! Her daddy is bringing her to my mom's for a while and I was already going there for a while so this is perfect. I'm sure I'll completely exhaust myself but since everything does that no big shock.

Now I just need to give up the why haven't I gotten a disability approval anxiety and we'll be fine. I know that my claim is in processing but I also know that needing 6 more weeks after being off so long may raise questions. Every other time it's not taken this long in processing. I don't think anyone can really deny that I am still not well, it's just I'm using almost my full 6 months and that's unusual. The worst that happens is that they make me see one of their doctors and if they still think I can work I can appeal. I also can send them information from Dr. Mind and after I see Dr. Body I'll have further support I'm being treated for exhaustion, etc. The only thing is that I don't have the money to survive until then. Apparently I was confused enough in November that I swear I remember paying bills and I paid almost none of them. So all my utilties are higher than usual payments this month.

I am so sleepy. I may even try the usually self-denied early bedtime tonight. We'll see.

And now, LAUNDRY. Really. Sheesh.

This may get interesting

2011-12-07T09:18:00.001-05:00

I am not sure I've ever had a drug do this before and since Latuda is a new kind of med that may be the cause. It is so hard to explain what it has done. There is no question that in 10 days I'm no longer suicidal and am a lot more "alive" acting/sounding. I laugh and smile, not like normal, but a lot more than I was before. But......
it's not working that well in a lot of areas.

I started off with it helping me sleep pretty well. Now, even on the higher dose, I am back to needing additional meds to fall asleep. And I am so tired and lethargic that I can't do much at all. I'm going to see Dr. Body in the next few days to see if anything else is causing that. Occasionally I'm up in the morning and then nap in the afternoon. Other days I just sleep until about 1. That is too much sleep and it doesn't seem to be a depression thing. There's another increase but with it comes and even greater risk of akasthesia and I'm not completely sure that there isn't mild akasthesia already. Not enough to be a problem, but enough to cause the difficulty falling asleep and to make me feel I need to be doing things when I can't because I'm too tired to move. The exhaustion, I assume related to the lithium toxicity seems to cancel out some of the agitation that I can feel but at a level it's not propelling me. I'm not anxious to do anything that risks that propulsion again while I am so very, very tired.

The other thing is that it's supposed to be a weight neutral drug. I realize that I have not been moving around and have turned to carbs a little more than is wise. But I'm gaining weight rather rapidly on it--about 2.5-3.5 lbs per my scale which is accurate when compared to the doctor's. I already had gained weight and I'm feeling very icky about the gain and there is a limit to how much I'm willing to risk gaining. I want to start weight watchers then use the diet that got 50 lbs. off before, but right now that would be bad. Actually it might not be so bad if I wait until I have a check and can go buy enough healthy foods, but I'm afraid that right now trying to lose weight would merely frustrate me. However, 6 more lbs. and my feeling that I've been eating well enough and we're done with this.

I'm off to get lithium levels done pretty soon. I'm kind of tired but this really needs taken care of. I may try to do as Dr. Mind suggested and see how busy the mall is and try some mall walking for a while just to get out of the house. We'll see how I'm feeling after the labs.

Determinations

2011-12-07T00:16:00.001-05:00

I went and did some errands today and finished up Christmas shopping except for needing a key chain of all things. Don't know when those got hard to find.

Anyway after being in only a few stores and not that long I went to Dr. Mind's. I had to wait a little bit b/c I was early and suddenly realized I was shaking and not feeling great in a lithium way. I must have gotten just warm enough to trigger it. I drank a lot of water and that helped some.

Dr. Mind and I talked a good bit about I am very, very lonely right now and feel trapped because I don't feel good enough to do anything. I obviously need a lithium level done, but I am also going to go see Dr. Body to get checked out. The hospital dr. really didn't check anything but labs after I left the ER and if the toxicity went on for months he might be able to help figure out if something is unhappy. The good thing is my first basic labs are back and normal so my kidneys only went into overdrive and recovered; considering my level that is a very, very good thing. Kidney damage is a risk with lithium and with bad toxicity that risk increases. Dr. Mind did have a great idea; there's a mall that is little more than a ghost town pretty close to his office and on days I'm up there I'm going to try to walk there some.

I'm also going to see if he's comfortable helping with anxiety meds until Dr. Brain is better. I tried the Klonopin isn't working theory today and am pretty sure it's true. I think that's part of my sleep issues as well.

Tomorrow I'm getting my gutters cleaned. Thank God as I've put it off too long (like a couple years) and there are clearly clogs.

Years ago I babysat for 4 kids from my church who were something like 4 kids in 6 years. Their dad was a vet and so I learned to use a radio to contact him and the major farm emergencies. I spent a lot of time with these kids and got to be very close to them. At some point their mom quit hiring me; I never knew why and never got to say good-bye to the kids properly. It hurt horribly. 6 years ago tomorrow the father was killed in a freak and awful farm accident that the only blessing is that he was killed instantly and probably knew little of what was even happening aside from initial fear. Please pray for that family tomorrow.

If you've emailed me personally I'm not ignoring you. I just keep being lazy about answering. I need to feel like doing things again. This is getting so very old. Answers will come.

My anxiety doesn't need help

2011-12-06T15:25:00.001-05:00

So during the time that I was dealing with the toxicity and feeling suicidal and all of that (just a week ago somehow) there was also a lot of paperwork Dr. Brain needed to fill out. The most important was a letter for my job explaining why I wasn't well enough to work. The other 2 forms were also important, and Dr. Brain was trying to get ready to be off for a month. She also spent about 5 hours either with me or emailing with me last week as I adjusted to the new med, had toxicity symptoms, etc. So the letter wasn't priority #1. Unfortunately she missed the deadline and I was way too out of it to catch it.

I haven't heard from work that I'm fired because that letter was delayed. I am hoping it isn't ever noticed. However it could be the last thing they need, should they want to get rid of me. And all I can give them in return is excuses, ones that are valid (my medical status caused confusion and I wasn't really aware of time; her focus had to be on getting me well enough to not be hospitalized; I did remind her several times) but which are still not the immediate response they requested.

I can hardly ASK about this as it would bring it to their attention and that is very much not my goal. So instead I will be taking something for anxiety and praying a lot for the week or so until they make a decision about keeping me. If they let me go bad things will happen...We'll not go there now.

I'm off in a few minutes to do several errands and go to see Dr. Mind.

Psychiatric hospitalization for the terrified

2011-12-05T22:34:00.001-05:00

I have been doing several information gathering projects, trying to help us know how to proceed with my lithium toxicity. One of the things I keep running across from 2006 was that Dr. Mind wanted me to be hospitalized and I shamelessly kept begging Dr. Brain not to make me go. I was close enough to have a list of where the patients at the psychiatric facilities I worked out were sent when needed so that I would hopefully avoid overlapping.

I was literally phobic about the hospital for many, many years. I don't know why exactly, I think I wanted to avoid admitting that I was mentally ill. I also had a thing about having to do OT. And for many years I avoided it. I lied at times, once I screamed at a doctor until she realized I *would* fight and win if she tried to place me against my will because I knew the right phrases and I was not going in myself. I begged my way out of it a lot of times. I lied to myself when I needed to as well. I was aware when I was feeling like hurting myself but thought I could squash it. Only now I am walking into Dr. Mind's office and easily admitting that I am wanting to give up, although ever since he yelled (he was actually mad. It made an impression) at me for not admitting this kind of thing at the beginning of a session I have always made it so it would ask at the beginning by alluding to the issues existing.

I really didn't understand that hospitalizations could be about more that suicide. One thing that really, really helped me to start to understand this was that I knew for 3 years that unless something amazing came out the next antidepressant would be the Emsam that I use now and that going on it required hospitalization. I also knew for those entire 3 years that I was on a tightrope with imipramine because there was a tiny difference between needed and too much and we customized a dose for all that time. So by the time Emsam was needed I was able to fight my fears and ask questions and while I dreaded going as the time got closer and I was sicker I was glad to have somewhere safe. The hardest part after that was that it was hard to handle parts of that admission and I was afraid of a repeat.

This fall I knew for several weeks before I was told that it was extremely likely I'd be going. I guess I was told, just in Dr. Brain code. I was ok with it because I was so desperate to stop needing to move and to just sleep already. And it was a positive experience.

So I realized while doing all this research that I've written so much about my fears and reasons to avoid hospitals and the truth is that as time has passed and I've spent a total of 16 days in the hospital I see it more as a safe haven then anything else. Granted, Dr. Brain kept me out of hospitals until there was a mood disorders unit available. That makes an enormous difference I am sure. For me just the quieter atmosphere of no more than 10 (at one point there were only 2 of us last time for a few hours) patients is huge. There are also a lot more freedoms, like internet access and I'm allowed to have my sensory stuff without fighting for it (just explaining extensively).

But I'm just saying if you wound up on this page because I've written a lot about the hospitalizations I've had, don't be afraid like I was.

wow

2011-12-05T21:23:00.001-05:00

Dr. Mind and I have been debating whether or not I am realistic when I become concerned that it is time for another med change. I talked to Dr. Brain about it and she seemed to agree with me that he doesn't realize exactly what I've been through before him. He also doesn't know that I'm accurate about how few meds are left and that right now I remain reliant on new meds coming out as I need them. This is working for me and so I'm not complaining as waiting for new meds has been the theme since 2007 or 2008, and the new meds are more effective for me typically, but it does add a little excitement to life when those changes come. Thus far it seems Latuda is a good med for me; it is a bit weird in that I take it and then tend to be more anxious for a while but when it decides sedation is in order it works great. I'm sure eventually I'll learn to predict the sedation better. Tonight it probably a bad night pending; I was taking my pills and dropped one. I am pretty sure it was 1/2 of my Latuda dose but can't be sure and I crawled everywhere and can't find it. If it was Latuda it would be tiny. But there are other things that it could potentially be and taking too much Latuda would be a bad idea so we'll just deal. Anyway, to try to show Dr. Brain the reason for my concern is not that I've exaggerated my history in my mind but I really have had a lot of times that things simply didn't work out and because Dr. Brain and I were both interested after we started talking about this, so I've been listing med cocktails. Without giving attention to minor dose changes I'm coming up with about 56 if my counting ahead of where I'm writing is effective. Pages and pages of drugs. So the end result of that is I win. Dr. Brain also pretty much agrees that I don't have options sitting there waiting for me and that being anxious about this to some extent is normal. Like everything though I have anxiety down to an art form and that's the issue to address.

In the anxiety slot I think I realized part of why I am anxious. I think I'm becoming/have become tolerant to Klonopin. Both the benzos I've had in use for the past 2 years have been used very heavily in the last 4 months. I know valium is done. Mid-sentence with Dr. Brain Saturday I realized that it is very likely that klonopin is done too. I hate that as it is a really, really good med for me, but it would make sense for tolerance to have built and that would help explain some of my crazy anxiety lately along with my preference for vistaril which should be and always has been less effective. Granted I'm taking a lot more of it than I used to but it still shouldn't work better.

Days here are still very lazy. I'm going to leave a little early tomorrow to have time for a few errands before Dr. Mind. I hate the idea of stores but the ones I need shouldn't be that bad. Thursday I'm hoping to go to my mom's and do Christmas boxing (we use re-usable boxes instead of gift wrap). I'll just feel better when that is done. I seem to be able to do about one small thing/day. I need to start increasing that but I also need to adjust to the meds. It's tricky.

And there is something I need to do before I get sleepy. Not much of a clue WHAT but something. Better figure it out. Oh, changing sheets. Job most hated in my life I think.

Dr. Brain

2011-12-04T20:00:00.001-05:00

OK, something new....Time to pray for Dr. Brain. Tomorrow (Monday) is her hopefully final surgery/treatment for breast cancer. This is outpatient but she said anesthesia is hard for her so please pray that it goes perfectly, that the anesthesia is easy for her this time and that she has no pain. I suspect that is a fear since the last surgery was considerably more painful than she expected. She's waited a long time for this to all be over.

She's a special person and I hate that she has to go through any more.

Gak

2011-12-04T00:13:00.001-05:00

So we definitely are getting our answer about whether last night I didn't get to sleep easily because I was anxious or upset, or whether this is the med. Now we just have to find out if it's akasthesia or just time to increase the dose. That will be tomorrow night. For tonight I just took some vistaril. I also emailed Dr. Brain a few hours ago when I realized we made this plan but we made it so that the worst of this could hit while she's not available. I do not think this is necessarily akasthesia. It has some characteristics but mostly it is just I'm awake. So we'll see, but it makes me extremely nervous to consider raising the dose. That increases both sedation and akasthesia risk. So we pray that we increase the dose and I sleep and never have another bad night, while knowing that increasing could also be opening the door with the starving unchained tiger behind it. And of course my anxiety is not going to help anything, yet it's hard to avoid. And taking more meds to make it go away doesn't help as that can just falsely cover everything. It's one thing to take something to make me sleep when clearly that's not happening on it's own, but it's another to sedate myself so that we can tell what symptoms are present.

We'll see what happens now......

Which path shall we take?

2011-12-03T21:10:00.001-05:00

After doing so well on the new med with the dumb name for several days I had a bad night last night. Granted, I got a little upset about a making fun of mental illness Facebook thing and blocked someone which I didn't know she'd be notified of resulting in a rather late email explaining my position, but I wasn't upset, just tired of it all. I don't want to live in high school; I didn't enjoy it much the first time. So we don't now if it was a bad night, a need for a higher dose, more of my body being confused on the lithium deal or the start of akasthesia. Fun stuff. The decision finally was that if I don't sleep tonight we'll increase the dose. This increases the risk of akasthesia so I assume we automatically assume that restlessness during the day combined with lack of sleep means we're starting to see akasthesia and we go from there. Thankfully (and guiltily) Dr. Brain will continue to work with me and with Dr. Mind while she is off for relatively minor surgery. I'm glad because handing this to another dr. right now would be mightily confusing, but I feel bad that I need this after being so dependent for so long. I mean she's spent 4 hours WITH me, not to mention research time on this just this week.

We discussed lithium a lot. She is going to try to find out if there's a way to estimate exactly how toxic I was when I entered that ER (accurate levels are drawn 12 hours after the last dose is taken. My moderately toxic level was drawn 22 hours after it was taken meaning it was probably pretty high, something good to know since I kept insisting no toxicity here, nope, oh yeah my hands are shaky but I'm manicky, my reflexes are always messed up (true, but the opposite of what they were testing), I have some muscle pain but that's from _____, etc. If I stay on it I have to recognize it faster. We'll be testing a lot more often but testing is difficult because of needing to get to a lab at a certain time when I have to work. The risk of kidney damage exists where I was and thankfully my kidneys just went into overdrive and showed they know how to kick butt. However that may not last forever. There are some studies recommending lithium be used only 5-10 years to protect the kidneys. We discussed and I decided long ago that if I have kidney damage we'll talk then but for now it is so vital for stability that we're not going to give it up as a precaution. That's also why I'm still on it despite 2 toxicities. Last time we did stop it eventually and all that happened was about 8 months of instability. So this time we're working with what we know, which is that I've been quite toxic and quite possibly for some time, even on a very low dose I am still having mild toxicity symptoms in the mornings when my levels are highest (normal) and that we know that last time we had a really hard time getting my body to accept it again. Also, I've been suicidal enough to need to get my mood stabilized before we mess with something that may make me not feel fantastic. (Last time every reintroduction resulted in the return of nausea and diarrhea which then led to needing to test, reduce, and restart. I had something like 18 blood draws in 6 months (my thryoid too) and it was just tough. So for the next while we're going to let my body think about how it feels about the tiny amount of lithium and then we'll decide if we're going to re-try or try coming off. The trick with coming off is that lithium has a nasty habit of 3 months after you stop you become an emotional wreck and that happened to me the last time as well. I am so grateful we are doing this in this way because I am already edgy about the entire hallucinations and my willingness to admit to them, which was HARD, may have prevented a very different outcome than my leaving the hospital angry.

I realized mid-sentence as well that soon we need to check whether klonopin is still helping me. I have been on it a long time and we've used it heavily in recent months. I'm honestly not sure it does much. But that's also waiting. Not sure where that will go as I've been on a lot of benzos over the years and most meds used for anxiety otherwise don't work with my MAOI. I may be stuck with just antihistamines which work but not perfectly.

I am not to return to work for 6 weeks. It will pretty much be my birthday present. Hopefully, if all works out.

Last night since I coudn't sleep I made hats for my niece and her favorite doll (not the best picture but I couldn't get a better one):

Two weeks

2011-12-02T17:43:00.001-05:00

Two weeks ago I was checking into the ER. I was looking around and counting about how many people were ahead of me and how sick they looked. I was surprised that it was so few people since I've seen smaller ERs around here much busier. I had a really, really hard time telling the woman why I was there. This may have played in my favor by making me seem more paranoid than I was. I sat down and within minutes was called to triage. One nurse asked me 3 questions, realized it was psych, and got another nurse, who I am sure was a psych triage nurse. I explained the situation, emphasizing as I would over and over that my psychiatrist thought that the hallucinations may be neurologic and that she wanted labs and a lithium level done so sent me to the ER. I was terrified that they would automatically send me to the psych place (which is only partly psych and also regular hospital) but she'd said to go there. I'd been planning to go to the psych place because I at least know the psych people there to some extent, it's smaller, and I feel comfortable there. She wanted me to go to the main campus so I wasn't shunted to psych and not find out my lithium was toxic until the next day when I'd have automatically have had a level done. She was afraid that because I have a diagnosis that they wouldn't be aggressive with medical assessment in the ER at the psych place.

Within minutes of triage I was collected by a girl who I heard ask someone "is 6 ready" and then we paused for a minute after the answer. She took me to this tiny room with a wood door, a gurney, 2 chairs, a bedside table, and an IV pole. There was a plexiglass window that was covered by a little cloth they would check me through. I was given a gown and the pile of blankets I asked for because that room was cold. The IV pole was immediately removed Later, as I'd go to the bathroom I'd come to understand there were a few of these little tiny empty rooms (2 or 3) that all had locks on them and signs indicating they were not for isolation use. They were psych rooms. It took a bit to get used to that although frankly I was grateful. I had privacy in my hospital gown even when I had to readjust the gurney sheet every 10 minutes because the gurney was very upright and the sheet would come off, leaving my bare skin on the plastic. I had privacy to talk to the psych resident and anyone else who I had to tell I was hallucinating.

Because of the psych thing they didn't leave me sitting until I was fully diagnosed and deemed safe. I had labs drawn very quickly and the IV thing put in although no IV was started for a long time. A medical person did a quick check-in and the psych resident was with me then nearly immediately for a good long time. He actually had listened to Dr. Brain and knew my history and had read the massive amount of information she'd sent him about me and things I'd written in the previous few days. He was very, very kind and listened so well and did not label me "psych patient". He matter-of-factly told me me that if my labs were off I'd stay there for 2-3 days and if they weren't I'd go to psych for a few days. I was a little surprised to find out if I went to psych I would not be allowed to take myself. I was annoyed at myself for this because I'd packed a bag but left it in my car so I'd have no clothes or anything until I could get my mom and someone else to come up, move my car and bring my stuff. That part didn't happen although I can't tell you how much I hated that I had my own toiletries and clean underwear in the parking lot while had to use hospital toiletries and dirty underwear for days. Always bring clean underwear with you. I don't know why I thought they'd let me go get stuff; I was sick and hallucinating, they probably wanted to keep some kind of close eye on me.

Anyway, the rest is the part where I found out I was toxic, the attending gave a lesson on lithium toxicity symptoms to the resident from the ER (not the psych one), and I kept saying I wasn't toxic (they didn't tell me that until everyone had poked around enough to be happy. To my knowledge I didn't have symptoms until they were pointed out. Well, yes, I was shaking like a leaf and had been. No, there wasn't a good reason that I knew of. OK, I was off balance but my balance stinks. I was a little weak but hadn't done much. Etc. This is the reason I had no idea, I was justifying every single symptom.

I waited for about 3 hours after finding out about the toxicity and then went to the horrible, awful, nightmare floor where I was tortured for 2 days. Strangely the ER was the best part, the only time I wasn't "that psych patient" and where I felt respected and that I was getting good care. The worst part of the ER was the person who started the IV managed to have me bleed everywhere somehow. Big deal.

I can't believe it's only been 2 weeks. It feels like 6 years.