Anxiety

Two weeks ago today I stopped taking the drug that I had been on longest, Ativan. It wasn't working well at controlling anxiety during the day without sedating me and anxiety was obviously becoming more and more of an issue.

The last few days I'm realizing that I am pleasantly less anxious lately. It's still there and I'm not really sure that the med I'm using for the moment (atarax) is going to be my long-term choice, but I'm also finding I am so much more functional when I'm less anxious. I'd gotten so used to horrible anxiety I didn't realize how bad it was. I'm starting to move on with my life in areas I've been stuck for a long time.

This weekend I am blissfully enjoying quiet and being home. I'm loving being alone at last. And it's actually cool enough I can have the windows open. Joy.

I'm So Talented

As this blog discusses many times, I get a lot of bloodwork done. I have to have lithium levels done every 6 months, depakote levels done every 6 months, liver and kidney functions every 6 months thanks to lithium and depakote, and one or two tests are done annually. I have hypothyroidism from lithium which also means labs at least every 3 months. Each time my dose of lithium or depakote is changed I have to have labs done then as well. Over the last 18 months I have spent around $1000 just in lab co-pays, and have had 16 or 17 draws done.

Last year I got myself in a lot of trouble by missing one lab. The whole sequence is described elsewhere, but just by missing one dose of pills so that I couldn't get labs done the day I'd planned became a devastating event in my life. Now I am prodded about each lab, although I certainly know enough to go.

I had a depakote level done this week. The night it was done I emailed the doctor and told her I thought it was about 120 because I could tell it had increased from the previous level (my hair falls out when my levels go up but I have so much hair it doesn't matter) but I didn't think it was overly high because I didn't notice anything else at all. In the Time Before I Was Toxic my levels were generally 120-135 so I know the level.

She emailed me the results. 124.

I'm never getting blood drawn again. I will just TELL them the level from here on out.

I have a plan

Today was a little less um, dramatic, than yesterday. Except that I found out I totally wrecked my credit score during my 2 years of serious illness. The good thing is, I guess, that I already have the things I really would need credit approval for anyway, and I'm working (and have been for several years, I just got messed up by illness) to pay off all credit card debt ASAP. Nonetheless, stress just is no fun.

But anyway, the point today is to explain my work plans. This week I got in trouble yet again for not working fast enough. I sat in therapy and listened to myself, and thought about how much I hate listening to myself go on and on about this and say the same things, and how much I know I need to decide to fix it. I also realized that part of why I don't have friends at work and haven't even tried to make friends this time is because I'm unhappy doing this now. I'm unhappy that I can't just do what I do and move on and I'm unhappy that I can't do better. I realized that I don't act like myself so much of the time any more, and that a lot of the time what I'm feeling like my therapist is showing me of myself or how he sees me, he is getting because he sees me after I've worked all day and that's all that is left.

But I didn't used to be like that. I was fun. Even with bipolar I could function socially at work as long as I took my meds. But now all my energy goes into barely keeping up.

I've known for a while I needed to find something a bit different to do. The challenge is that I don't feel qualified to do many of the things OTs can do. I was getting sick the whole time I was in school and there is a lot of information that never made it near my brain. There were many, many missed classes (Emilijia will understand the significance of this: I skipped all but 4 kinesiology lectures because the professor was so boring I could sit still. And I passed.....no clue how. Still don't know open chain and closed chain, lots of anatomy, etc....) And I just didn't want to change fields because of the illness. I don't like quitting anything because the illness says to.

Also, there were practical issues. I make more money than I will in another setting, possibly quite a bit more. The potential money loss gets more significant as I gain experience. On the other hand, insurance that provided coverage of my psychologist more than just in theory would make up a lot of salary. I have already been without short-term disability or FMLA coverage for 8 months; I'm so close to the 12 months to get them back. Those are things I cling to as no payments, no house. Since I'm not in a place where we can be confident I'll stay ok for any length of time yet I don't want to dig a hole, as the remaining treatments pretty much promise me time off work and/or hospitalizition.

But I now realize I probably will have a shortened career, and I am doing no-one any good if I'm going through it bitter, tired and angry. Which is precisely who I've become. I hate this me.

So my new plan is to tell my doctor next month that once my disability goes into efffect, the next time I'm sick I want her to be as aggressive as she can. I'm assuming this will mean jumping to ECT or Clozaril. Maybe Zyprexa, although I'm not sure it's still in the ring as very likely to work. I'm going to agree to hospitalization, anything, and when I'm good and stable (or a reasonable approximation) I'll go back to work, find another job, and try again in a different environment.

In the meantime I'm going to stop whining so much.

Ironic

The patient I mentioned yesterday, the one who I feel is probably symbolic of me in my therapy at this point? One of her goals is to walk across the room, do everything involved in going to the bathroom with someone standing there in case, then walking back.

Today I spent 45 minutes doing this one time with her. Every time we started to move from step a to step b she'd plop down.

There's a little voice that I have noticed becoming stronger and stronger with every year of therapy experience. I have learned if I hear that voice it is right. Today that voice said "this woman is going to try to fall". I say "try to fall" because she really was, she was throwing herself towards the floor. I even made a contingency plan in my head, but I didn't want to give her a chance to get out of doing the work so I didn't do what I really wanted to do, which was get a 2nd person. Plus, she is able to walk, so it's not like this was that risky.

Except she did try to throw herself on the floor. The experience voice was exactly right and I had positioned myself exactly right in anticipation so that I caught her and the only damage is a few sore muscles.

The frustration is really high now. And I know that's what I've been doing to myself and my own therapist. If you asked him I bet he'd even be able to find ways I've been throwing myself on the floor at him. (Which is just not very polite :). So I think I'm going to tell him that the topic which I am struggling with and am so angry and bitter about (it's work, ok, I hate secrets and if work is going to read this they are, and I don't think this is going to shock anyone; I am pretty sure that I have reached the end of my ability to function in the setting I'm in. I hear hospitals are more structured so I'm probably looking to change to that arena sometime after my doctor feels I'm stable enough--it may be a year. Emilijia, feel free to tell me all about it; I've always been in nursing homes or long term psych.) that even I hate to listen to me, and I'm taking it off the table for a while. Probably a month or more. I think I'm so tired of trying to fix something unfixable that I am completely resentful, and well, I am having tantrums and throwing myself on the floor in rage.

This was some day....I got in the shower exactly when they started flushing the town water lines, so I got a shower in water with dirty stuff pelting me, hard. A raccoon had drug trash across my lawn and I had no time to clean it up. I was late to get a blood draw done. The first ATM I went to was broken. The 2nd told me I am low on cash, anticipated due to lower work hours lately. I had busy, busy patients I couldn't find or who were sick. Several were being cared for by Nurse Atrocious who didn't even know they were sick. I found out one of my patients is going through pain med withdrawl and she had taken a pill from a stash in her purse. That's the 2nd time that's happened this year and I never encountered that before this facility. I spent a lot of time with her sobbing. Another woman threw up on me. I wasn't even working with her, just there in time to catch the puke. I tried to take a shortcut that doubled my ride home.

Yet I don't want to say that the time is coming that I am leaving all that.....

Monday

Mondays are my long day. Work followed by therapy followed by a long drive home. I'm usually gone 12-13 hours. Then it's trash day, so by the time I'm inside and have my shoes off it's a few minutes late for pills. And throughout this I'm constantly thinking because I generally realize I wasn't done with therapy after I leave and I usually have more to say than I thought.

Lately I've been really bothered because I think I'm annoying my therapist. I feel like I'm not trying hard enough or moving fast enough or something. I get the impression that I am really frustrating him.

To be honest I don't care if I'm frustrating him in some ways. I know we're going to clash sometimes, especially if he really is in this long-term as he says he will be. I'm pretty sure that it is better to clash than to receive praise for things I'm doing that are not beneficial to me. I'm in the midst of making some very hard decisions and I am being slow about it and not at all decisive. I'm sure that this is horribly frustrating to listen to over a very extended time period. It would be better for me if I just made the decision and got it over with, but I can't do that because my life isn't set up for the changes (work-related) to occur just yet. I'm pretty sure that some friction between us at times is a good thing. I'm not sure that my questioning whether he wants to leave each session and steal a handle of my anxiety meds as I walk past him.

On the other hand, I think of my own patient who every treatment requires us to take many, many deep breaths because she just won't try anything we ask so that she progresses, and we know that she is making bad decisions that are preventing her from getting well, something that would be entirely possible for this woman.

I need to figure out how to talk to my therapist about this, but I don't have a good reason to question him; I don't have anything specific. I really hope that I can figure it out soon though.

6 days until next Monday.....

zzzzzzzzzzzzzzz........

Sorry I've not been saying much. All I've been doing is sleeping and working. The new med for anxiety makes me somewhat sleepy and the increase in Depakote to 3000 mg makes me really, really sleepy. Add to that driving quite a bit for work and I'm just worn out. I am so glad it is weekend.

Just not much else to say. But that's part of being bipolar, these weeks of incredible fatigue.

More later.

Friends inside and out

I had 3 really good responses to my last post and I wanted to address each of them.

Emiljie: I wish so much a support group were available. The thing is that it is so rural here that there are probably 5 bipolar or schizophrenic people in the whole county, which is huge. There is not a hospital that handles psychiatric admissions for non-gero-psych issues in 60 miles. That one does have a support group, but it is an impossibly long drive to get there, especially with the drive time I already put in for therapy and the psychiatrist. I've been in 2 support groups; one in college which was absolutely wonderful and which gave me the courage to do many things I can't believe I did, and another in grad school which wasn't as great. The one in grad school was a moderated group and everyone in it was in a totally different place in life, and it very quickly became something easy to set aside. I think I mainly quit because of the moderation; I remember feeling so much of it was phony, and at that point I was completely therapy'd to death and really not doing well at accepting anyone pushing me in any way. I had just been through very, very intense therapy and needed to coast a little, and the people who were treating me hadn't seen what I had just completed so they weren't interested in the coasting thing.

Work....I have had work friends. This job that's not so true. I have one person I like a whole lot, but I almost never see her. Otherwise I don't get a lot of "it's ok to be Just Me" from my co-workers, so that makes friendships hard. Even when I did have good friends at work at other jobs though it was limited by the weird hours I work, the distance I always seem to work from my home, my fatigue, etc.

Raine: "how the heck can you maintain friendships like that?" is precisely my question for my therapist. I'm not sure he's buying this yet, he really thinks I have really poor social skills I think (my social skills aren't great. I fully admit this. I think though that I had much better abilities at one time and therefore to me that proves the illness has taken another thing away, not that I totally lack this). But I really want to know how anyone could possibly deal with bipolar of a significant nature and maintain a normal social life. I truly do not see it being possible. I never am completely sure he likes me normally. I think I frustrate him a good bit. But I need to ask him how much he likes it when I'm grouchy with him, because he's never seen me nearly as bad as it can be.

Online relationships haven't ever worked very well for me. Not that I've tried much. I like my blog friends and have had no problems with anyone from here. But back when I was first diagnosed or fighting with "major depression with GAD, PTSD, etc" (you name it I had it for a while) I was in some support groups. But I got irritated with a lot of it and frustrated with the people who posted the most generally being the ones who most annoyed me, which cluttered my inbox terribly. Then I got a lot of people angry at me and quit.

Again, online relationships don't turn into real ones because I live in the middle of nowhere. I only have one regular reader in this entire section of the country (multiple states).

Sarah: Don't cry.....or cry if it helps. But I guess at least there is this kind of community. I know that having you blog-people in my world in the last year and half has made a huge difference. The last 18 months have been horrible in many ways, and I have come to rely on this blog as a way to talk about it all. I am not sure I could have made it without the outlet. I'm sure I'd be seeing my therapist even more than I already do. It is amazing how often I can't wait to write about something. I don't even care anymore if people read it or like what I say. I know that there are a few of you out there I can count on to understand.

Maybe "inside friends" (ones that only exist in the computer) are the friends who are going to be closest to us in some things. I know there are areas you all understand that nobody else gets at all. I reached the point recently where I'm not even talking to people about what might be future treatments, because nobody seems capable of understanding that I really might be making a totally reasonable decision when I say I'd rather have a short course of ECT early in the next depression instead of trialing more meds nobody thinks will work. I don't talk about having taken 31 psychotropic drugs without results because nobody but someone who has been on psychotropics understands what that really means.

I don't know. I am tabling this topic for a bit in therapy because it kind of freaks me out (I feel like it is one too many major issues on the table at once) but I'd love to hear ongoing thoughts because this one will be coming back, I suspect a lot. My hermit ways have been detected....

My brain won't quit today

Please note this is today's second post. I've not had a lot to say and suddenly I have tons. Today was a long day. I drive 2 hours each way to the psychiatrist and traffic was heavier than usual with lots of construction today. The doctor was late by about 45 minutes, and as usual my appointment was over an hour long. Then I had to go to the pharmacy and wait an hour. I got home almost 8 hours after I left and that was all I did (well I went to the garden center for 5 minutes).

As I've mentioned I'm working really hard in therapy right now on dealing with anxiety better. (And I guess after my psychiatrist's appointment today we're working on this with meds as well). Anxiety triggers mania for me, and I tend to get upset about something, become anxious, and ultimately that leads to a manic attack that was triggered by something stupid. I can feel I'm doing this, but I can't stop it. I also force myself to become anxious and use manic energy to propel myself when I am very depressed. It doesn't work all that well or for very long, but for the 8 hours of work I need it gets me through.

One of the things we talked about was what percentage of time I feel anxious. It was really sad to realize that the vast majority of my time is spent worrying. It's not exactly fun. It's not good for me and it doesn't make my life any easier overall.

I realized that it is a very complex issue for me because as a child it was not safe in my life to not worry. I NEEDED to protect myself at all times. My childhood had enough significantly bad things in it that I actually can't explain much about it because it would be identifying to some people; my family was not only abusive, in the area I grew up in it was notorious. I would not enjoy being identified by that. So that's all I will say: worrying was imperative.

I did get better for a while after I was away from home. Then as I became ill worry became important again. I did not realize this until a few days ago, but worrying and being excessively careful is the only thing that I can totally rely on to prevent the monsters in my head from lashing out. Constantly being aware that I am quite paranoid and always making myself consider possibilties keeps paranoia from controlling me. Worrying about whether buying something is impulsive or needed prevents crazy spending. I am getting less extreme with this; I finally have reached a point that I am buying things like clothing without fretting. Worrying about interactions with people prevent me from being nasty when I am manic. That's a major thing for me. I hate that out-of-control-I-just-screamed-at-someone-innocent feeling so much. I am not a screamer. I have major assertiveness issues. But when I'm manic I'm mean. Not so much any more, but that's because I'm hypervigilant to control it.

I do realize that there are probably better ways to cope and I'm all for learning them. However, somewhere in the midst of this discussion (all this is a series of 3 or 4 visits because it's not a fast topic when also handling my being very manic thanks to the lack of medication) the psychologist felt some random urge to bring up something I find horribly painful: friends and my lack there-of. I've discussed this before here and I'm not going to re-hash it because it makes me cry. But the truth is that I'm too difficult to be friends with, I don't have the energy to be a good friend, and I just don't have the strength to be hurt again. I'm still grieving the loss of the last person who said she'd be my friend always--until I got sick and wasn't quite the same anymore. I'm well aware of a lot of reasons I'm difficult to handle being with, much less being friends with, and that isn't exactly inspirational.

Frankly I was extremely angry with the psychologist last week. Angry enough to make me want to never go back and I have never felt that way with him before. I felt like he was picking on me. Does he not realize how aware I am of how obnoxious I can be? Do he not realize that I just want to protect myself? Where does he think I have energy to have friends?

Tonight I realized that it's the same thing. I worry to protect myself from being more out of control than I already am. I don't have friends because it is fewer people to subject to me when I am out of control. The more people involved in my life the more people (and the more time) I have to spend worrying about not hurting them. The only way I know to control my illness is to live in a shell.

When I think/write about both of these issues I sound like I have really low self-esteem. It's not that, it's that I'm realistic. It is not easy to deal with someone cycling every 5 minutes to few days. It is not easy to deal with someone whose predominant mood is "bad". It's not easy to handle someone who will always cry and who finds the strangest things very funny. The intensity that was part of my personality anyway and which is magnified a thousand times now is not easy to deal with. And that's before you even begin to get into the standard bipolar stuff like mood swings, no energy, high energy, impulsiveness, irrational thinking from time to time, and the vast difference between my life with its focus on medication, eating right, sleep patterns, etc. and theirs with marriages, families, etc.

Add to all that the simple fact I have enormous trust issues and it's kind of easy to see why I don't have many friends and why I really wasn't that worried about it until the person who is trying to teach me not to worry made me worried.

Finally

The Master of Irony Med List has been updated. For those keeping track at home, psych med #30.....

Today was my psychiatrist day. I am officially declared allergic to lamictal. I don't get a second try. I think she was surprised I'd asked about one. But it worked.......

So we considered the tiny number of options and decided I could increase my lithium or increase my depakote. I don't want to mess with lithium unless it's dire, and summer isn't the time to try it out if we can avoid it, so I now take 3000 mg of Depakote. That is 6 of them per day, and will mean that I will be given 3 bottles full of huge pills every month. That is assuming my body doesn't reverse it's recent trend to go lower on my blood level no matter how much I take and I have a too high level later this week.

I also am going to try switching multiple doses of low dose atarax for ativan. Ativan just doesn't cut the anxiety I deal with, it only helps. It is a good "take this to not fall totally apart" med, but from moment to moment it isn't great.

These changes mean that I will get to add yet another side effect drug to the list. That will be colace, and if you don't know what that's for, look it up. Enough said.

So, all told I'm going from 11 pills per day to 16-18 per day. Yippee. Good thing I can swallow pills these days....Way back I was on 23 and had to take each one individually. It took at least 30 minutes per day to take pills.

I was really happy about part of my conversation with my doctor. I was telling her about a conversation with my manager where I realized my manager has no clue about my illness and isn't bothering to try to educate herself at all. She's upset with me over things that if she'd read one webpage or article on bipolar she'd know. If she'd trust me to tell her about my illness she'd know. Instead she's assuming and she's wrong. My doctor agrees that it sounds as if there are issues and that my company may be trying the "let's subtly make it not happy so maybe she'll leave" dance. I need to address some of this stuff with the manager but can't do it right now because I'm too emotional.

However, I also feel educating herself about this is part of the manager's job and I was pretty frustrated when I realized she knows nothing. Anyway, my doctor volunteered to speak to my manager and tell about about bipolar and the type of bipolar I have. The really neat part is that she said she would tell her that I am one of the most motivated patients with the degree of illness I have that she has ever seen. That made me feel about a thousand times better about myself than I have lately. Not always a loser after all.

My next trick will be learning to take pills 4 times/day instead of 2. For a very long time we kept me on bedtime meds only because I had a really hard time with remembering AM meds. That lasted several years. Then I started Provigil to help me wake up and obviously needed that in the AM. I had to set an alarm, take it, sleep until it kicked in, and I'd get up. Then I had to start thyroid replacement and that has to be taken in the AM so that got added to the AM list. This summer I've had terrible allergies so that's also in the AM. I take all those together at 4 AM, sleep a few more hours, then get up. Now though I'll have 4 AM meds, a 9 AM pill, a 3 or 4 pm pill, and bedtime meds. That's going to be a challenge. If you see a very confused looking person trying to figure out why her cell phone is beeping, that will be me with a med reminder going off.

Time

I remember last year when I was the worst of the lithium toxicity and concurrent horrible mixed episode that I had a really hard time keeping track of time. There was no firm concept of month or day, so that I had to struggle to keep track of appointments and things that had happened 2 months ago could seem more distant than things of 5 months ago and many things from the past several years seemed to have occurred within some haziness of time that required me to search through my mind for context, then to figure out when that event occurred. So if someone asked me what year my car was I had to think "ok, my first car was a 2001. Let's see, I had it until I bought my house. When did I buy the house? (for some reason I never remember that). That was the year I got such and such job, and my hire date for that was April 2003, so I must have moved here in Aug. 2003. I bought the car in January, and I know that's right because I remember I was working in such and such facility at that time."

Today someone asked me what year my car was and I had to go through that whole scenario. I guess I need to add this time thing to my examples of what manic thinking is like.

If only

Sort of. This mania thing isn't pretty to be around but it sure is making me effecient. I've kicked butt at work this week. That is great but it will hit me back in a bunch of unfortunate ways. I'm tired, for one thing. That just gets more complicated by my sleep patterns being thrown off more than usual. Second, it actually costs me money. I am paid hourly and when I work so fast I don't need my allowed paperwork etc. time then I don't get a full day's work. Finally, and worst, it confuses my employer into thinking I can be effecient if I try. I don't know why it is so hard to understand that it isn't about trying, right now I'm trying to be less effecient, but about how my mind is working. When I'm thinking about 5 things at once of course I can do faster patient care and do more things at once than I can if I am going verrrrrrrrrrryyyyyyy slllllllllllooooooooooowwwwwwwwwwlllllyyyyyyyy like when I am depressed. When I'm manic I have more energy and am much less careful about how it is burned, so I have no problem blowing all I have by Thursday. Other times I try to modulate it more.

I also imagine the care I'm giving isn't top notch, but I no longer think the care I give is that good much of the time. If it were it would matter to someone. And if I do provide good care and nobody cares because the amount of money I make compared to the amount they pay me isn't the ratio they most want then something is so wrong. Obviously a profit is important, but this is about the patients, and if that isn't the biggest consideration then I want to do something else.

Also, did I mention I get really cranky when the mania is like this?

Totally different topic

Not much change. Another psychologist appointment confirmed that I'm continuing with dysphoric mania. Expected, but still the hardest thing to control in me. Then I got really angry with my psychologist, so it wasn't that helpful. In general I'm just counting days until I see the psychiatrist Saturday.

On the possibly plus side I think I have more rash. The good news from that would be that it would be from something besides Lamictal, giving me a better chance of success on Lamictal. I think it may just be heat rash which would clearly not explain the hideous hives, but it gives me a potential positive.

This heat? rash had me thinking a little. Some of it is on my stomach and would basically be there because of (frankly) fat from meds. I started thinking about the extra weight I carry and realized that of all the strange things to be really ok, that's probably one of my best.

People who meet me now often ask "Lithium?Depakote? Don't those cause a lot of weight gain? I could NEVER take them." I always just smile and tell them they could do a lot if they felt bad enough.

I was tiny (size 6; 120 lbs at most) until I started taking lithium. I immediately gained about 50 lbs and then gained more on depakote, although not much. (Like always I have reversed what most people do). Other meds added more weight and for a long time I hung out around 190, which is pretty chubby for my frame. It is frustrating because I eat much more healthily than many people and yet have nothing to show for it. I will not diet because I know I am unlikely to lose much weight with the meds and I don't want the sense of failure. I just eat the best I can and make sure I get tons of veggies and protein. After last year's mess with not eating for 5 months and having poor nutrition I lost 30 lbs, but that went back on quickly. I then lost a little weight when my hypothyroidism was treated, but after going to my sky-high Depakote dose over the last several months I've regained that.

I am aware of the changes in my body. I am self-conscious about them and dress in baggy clothes trying to hide my body. (OK, and wearing scrubs doesn't do much to help get past this). I already had issues with this because it wasn't safe to be a girl when I was growing up and so I already had issues with a woman's body, but those are multiplied.

So I'm very aware of the fat issues. Every time someone says they couldn't take meds that cause weight gain though I realize that they didn't know me when I was as skinny or skinnier than they are. I was an athlete and I had the body to show it, right down to toned and defined abs.

But it does strike me as funny that people can't conceive of feeling so terrible they would readily give up physical attributes to feel partially well again. Over and over I've had this discussion and I've come to the conclusion that it shows how far we go to extremes in believing that what we have felt is the worst. All of these people have been on antidepressants and felt horrible to need them and take them, but the antidepressants worked for them. Which makes it impossible to conceive feeling so bad that you don't care if you have to throw away every item of clothing you own including shoes (these meds have actually made my feet change size by causing prolonged and significant swelling).

It's such a different world out there.

Losing Lamictal Ain't Pretty

I'm still struggling with the emotional turmoil of losing my mood stabilizer. I just don't have much to say; I can't focus well enough to even write a full sentence conveying what I want to say, so I am just not saying anything. I'm angry and frustrated and tired, none of which changes anything at all. There's no point in talking about the unfairness; it is unfair but saying that does not change anything. Plus nobody promises us fairness in life. I'm fighting all kinds of off-the-wall thinking that I know is from the assault to my brain, but which still is hard to handle. I very much want to impulsively quit my job because I'm frustrated with it, and yet I know that's my thinking being bizarre. Then my thinking will change and I'll consider how little I want to live, and how I feel about facing 40, 50, or 60 more years of this illness. I vacillate between wanting to scream, to cry, to laugh, and to hide where nobody can find me.

Such is the joy of needing meds......

Tiny steps

I believe one of the more difficult parts of what I'm currently dealing with is admitting the small victories are indeed important victories.

This morning one of my AM pills went down wrong and touched the back of my throat. Because my gag reflex is insane from throwing up so many times I gagged and gagged. But I managed to do deep breaths and keep those pills in.

Now, back to my regularly scheduled dream of making a deal with a mob boss. (Didn't say I made sense.)

Bi bettert in a bipolar way

Thanks for the support. The last post was one of the more frustrated moments of what I'm currently going through. In some ways I'm ok. I'm holding it together more or less and just having bad moments instead of being totally out of it. I'm grateful for the good time I had. I'm doing positive things as I feel issues develop; I have another therapy appointment tomorrow and am waiting to hear back from the psychiatrist. I have a bad feeling I'll have to wait another week to do anything until I see her, especially if I'm re-trying Lamictal, which is what I want. I still have a tiny area of rash, and some of it seems to be only "hidden" by the steroid cream so that when I'm hot it will look rashy.

I know that things will be ok somehow, someday. I think right now I'm just mad because the ONE thing I didn't think about happening was this rash. I knew my options were getting narrow. I knew that I was near the point where we just hold as stable as possible and someday something new will come along. That is exactly why I decided to try some past failure meds before moving on to the last options. I did not really expect Lamictal to have a huge chance of working. In the past it made me vomit all the time, and I thought this was likely. Vomiting all the time does not make you feel good, so stopping it for that wouldn't have been hard. Getting a rash after it is working and having to stop when it is working, THAT is hard.

This is doubly hard because it is what happened with lithium. I never was super stable, but lithium at least slows the rapid cycling. I can't describe how else lithium helps, but I do not feel human without it. I am not just saying I don't feel good, I do not feel like a member of the same species. And I can only take a tiny amount, even though I know that if I could just take a higher dose the cycling would stop. It just would be too hard on my physical body.

So I feel like I am making the concessions and being more than willing to tolerate some nasty stuff. Anyone who takes these meds deals with nasty stuff, and the last 4 months I've been saying "here, this med was awful before, please give me more of it!". That has been really hard, and I needed it to work.

I also should throw in that work is hard at the moment. There have been an enormous number of deaths in my facility, including 2 of my favorite patients within 20 minutes last night. It is a very small building, and I think we've had 7 deaths in 3 weeks. All of the patients were people I knew very well. That leaves a lot of emotion. The death part of what I do is a lot easier when there is space to cope in between.

So I'm angry and frustrated. But I'm also ok. There are ugly thoughts swimming around in my head, but I know they are ugly thoughts. I know not to follow them. And my therapist will help me get control back.

Plus there is always Ativan, my new best friend.

Losing it

The loss of Lamictal hit really, really hard today. I haven't slept well for several nights and all through today I have just felt the brain chemistry soup heating up. It's gotten worse all day. I had a difficult discussion with my supervisor at work which I don't want to go into because I don't want to get upset again. I could tell at that point I was about to start losing it. I called my psychologist to try to get an extra appointment about noon (no luck so far) and emailed my psychiatrist for some med change a few hours later when it was clear that it was declining fast (nothing yet).

So now I'm all kinds of emotional and feeling all sorts of negative things about myself and my life. I'm just so angry that I finally got to feel better and do I get to enjoy it? Of course not. Because I am not supposed to be happy. Ever.

Worrying about worrying

I operate with a very, very high anxiety level at all times. It does not tend to remit much at all without medication and often a concentrated effort on my part. I have been diagnosed with all sorts of anxiety disorders over the years: generalized anxiety, panic disorder, PTSD. I have used the anxiety for years to get through the many, many days I am so depressed I don't want to get out of bed but have to. I learned how to turn anxiety into energy. The problem is that I don't really need to be converting anything into energy because it makes me manic. I get pretty manic simply out of panic rather frequently.

This is what I'm working on in therapy. It's a new project and will be a major one for a long time. Last week, before the chaos of the rash, I had a really bad day at work and got myself really worked up. I did what I should do though and called for a therapy appointment. It hurt my pride because that was supposed to be the first planned 10 days between visits I'd had in a very long time. But I needed to go and it's good I did since I spent the rest of the week knocked out.

Today I realized that I've developed this thing where I am trying so hard all the time to keep a lid on my crazy emotions that I have turned it into out of control anxiety WITH out of control moods instead of just out of control moods. The anxiety does help me avoid having moods sneak up on me and explode, maybe, but I still am out of control and making it worse with what I'm doing now. So I need to fix that.

My problem is that I remember how scary it was to totally and absolutely lose control to manic rage or impulsiveness and I am afraid of ever feeling that again. I never want to be like that or feel that again. Meds help but we all know the mood monster lurks all the time, meds or no meds.

So how do you handle the need to remain in control of the extremes?

For those keeping count

I just updated my medication list to reflect current status after the rash. For those keeping track at home, I have now hit 41 meds (28 psych, 13 side effect fixers), and Lamictal will be restarted for a THIRD time soon. The 41 meds does not include Zyrtec, which I have a feeling I'll get stuck on as well, because I started it to deal with seasonal allergies, and it doesn't sound all that good to have an antihistamine going while starting it and then take it away at some point. That is a little challenging to my patience because I only wanted to take Zyrtec a short time because it is non-formulary and very expensive, but it's not like I'm going to choose to give up something that works over $60/month. If Zyrtec has to continue past seasonal allergy season then it is definetely going on my list.

Rainbows and Hives

Hives first: almost gone. Tomorrow will be back to work day finally. I have done nothing but sleep through this whole thing but nonetheless I'm tired of being confined. I'm glad to go back.



Rainbows: Tonight was really neat. I saw a total of 4 rainbows. As a Christian rainbows have special meaning to me. I have a further significance in my mind though for a variety of reasons. Mainly though it is something about all that color against dark storminess. It's so much like bipolar. It's not merely the contrast of color and dark, it's the added contrast of 7 colors all together like that. Color matters. When I first started working I decided that I would always wear bright colors to work even though I generally don't wear bright things because I was working in such a bland environment and I think patients need color. Sure enough, over the years the scrub tops patients compliment me on are consistently the really bright ones that I wasn't even sure I should buy, much less wear in public. Nobody ever likes the boring ones I'd select based on my own preferences.



The rainbows tonight were all neat ones too. One was one of those random ones that happen when it isn't raining but you are just the right angle to rain elsewhere. Next there were double rainbows. Later there was an enormous one clear across the sky. I saw all 4 of these just on my trip to and from the psychologist's. After barely being of of bed for a week I really needed this.



So I go back to waiting and watching on the rash front. Also I must not worry. That part is so very hard. Yet for some reason it is much easier to not worry about the med situation, to put it aside and think "I can't do anything about it regardless", than it is to put aside so many daily worries that don't have any relevance. In reality it is a much bigger deal that I am able to get back on Lamictal and stay on it because it has been working so well than it is for me to think about working. So what if I have a job if I'm too ill to go to it? Yet worrying about work is much harder for me to stop than the medication issue.

But there is happiness in every day. That is good.

I think the worst won't happen

The rash is improving. I'm pretty sure I'll avoid steroids. I even talked myself into a shower today. For whatever reason water makes this rash itch and burn so much I just couldn't handle a shower yesterday. (I didn't go anywhere anyway).

I am now just having trouble getting up the courage to deal with tomorrow. I don't want to go to work with a lot of visible and itchy rash. I don't think that's very professional in healthcare, I don't want to have to explain the rash to anyone, I itch, and I can't take the medication to stop the itch and work.

But like most jobs, mine really doesn't like you to have 3 days off in a row "sick". Not to mention I was off 2 weeks ago for 2 days. I have a doctor's note for 2 days and I'm sure I can get one for tomorrow as well (I'm guessing this will take through Tuesday to totally clear judging from the percentage gone from Friday to now). But the worrier in me wonders what happens if my doctor won't give me an excuse after I take the day off. What happens if my employer is really mad about the excessive absences? And then I start thinking I should be at work. Except for the itching. The itching and working are not a good combination. The itching, working, and medication are a total no go. I'm still having trouble even having hair touch my face because of the increased itchiness, so I can't really just give up taking the itch medicine. I have reduced how much I take it though and I'm taking half the dose. We're getting there, this is just slow.

I really just want to hide behind the woodwork at work and instead I'm doing things that raise red flags. Lovely.

Your questions answered

In the last few days I've had several questions about why this or that. So I figured I'd answer the ones I remember.

First, Zonegan. I will ask about it, as it is about the only thing ever that hasn't been discussed, but my guess is that my doctor is hesistant due to my history of becoming very nauseous from several meds. One of those if it can cause nausea it often has situations. I have a history of ulcers which adds to this. I know also that my doctor feels I could not get a substantial effect on Topomax without cognitive side effects, and that may be true for Zonegran as well.

As far as Seroquel goes (or other Zyprexa), it is the next med in line if a new one must be trialed. It has been my personal choice to keep it far down the list of options because I've seen a lot of patients on it and I haven't liked what I've seen. My other reason, which is the bigger one, is that atypicals and I don't get along. I've had bad reactions to each one I've tried (with one being trialed twice a year apart) and my doctor can't really promise a ton of hope of a good reaction without something problematic. I also had early signs of tardive dyskinesia on one and that increases the chance it it happening on others. My final issue is that getting on it is just inconvenient. I don't have disability leave time yet because I'm still in the pre-existing condition phase of this job.

However, if I have to take oral steroids, I probably will take Seroquel from the start because it's too risky without something knocking me out.

What else? Lamictal with lithium....That's actually part of a cocktail--depakote, lithium, lamictal-- which I was in a clinical trial for as a means of treating rapid-cyclers. The results haven't been released yet, but I believe they expect it to be pretty positive. I MUST have lithium in my system or I rapid cycle wildy. I wish I could have more lithium but it makes my have toxic symptoms too easily since I was toxic last year.

Rescue meds/doses? That's a dream. I have a few things I'm allowed to mess with, but there's yet to be something that can be thrown into my mix and counted on to behave. (Hence the hives all over my face as we speak). One of the goals we have right now is to figure out how to do this. The first step though is trying to determine what fault of my body's chemistry causes problems like fluctuations in my levels for no reason. So that project is set to begin soon with the hope that I'll be able to mess with my depakote dose, since depakote is my most stabilizing med.

Maintenance dose? Also something I just hope for. Actually I'm not even hopeing for that any more. For years we've been trying to "stop the rapid cycling". About 2 months ago I decided that no longer can be a goal because it doesn't happen and I need to focus on fixing the day-to-day issues. So we're doing that. But I've never been close to stable enough to get a maintenance dose because I've never gone long enough without cycling. I have never gotten to back down a dose, or come off something because I'm doing so well. So that's just something to hope for in the future.

I think that was all of them. This stupid illness makes it so hard for life to make sense; if only one way treated us all.....

Update

My regular doctor wasn't in today. His partner ordered a steroid cream. So we're still trying hard to avoid oral steroids. We'll see. I'm just being as positive as I can be and praying that tomorrow I'll wake up to no rash. If I'm still like this Monday I guess I'll go back in. Or if it gets worse I'll have to subject myself to urgent care (which is not pleasant; it always turns into a huge battle of them trying to do things that are bad for me) before that.

Mainly I'm just worried about work. I need to work and I can't really do it when I am sedated on antihistamines and itchy and scary looking.

So, hopefully a cure is forthcoming.