Laying it on the line

Here's how things stand. I have taken a high dose of antihistamine every 4-6 hours for the last 24 hours. I've slept a lot and I itch a bit less, but my rash is unchanged. Actually it is slightly worse.

I called off work tomorrow. Tomorrow morning I'll decide if I've had any improvement overnight, and if I haven't I'll call the doctor. That means I probably will take steroids. Steroids are very likely to trigger mania, just as my body adjusts to the withdrawl of a mood stabilizer.

From that point I don't know what happens; I assume it will be take it as it comes time. Which is pretty hard because I know how horrible steroids can be.

I'm trying really hard to be strong. Eventually this will resolve. I guess that's the important thing. Somehow it will end.

Crawling into a hole

I'm defintely having an allergic reaction, probably to Lamictal. I'm off it until further notice. I may get to try again with an even slower start. For now I have to take very sedating meds, skip work AGAIN, and not take the med that finally get me stabilized for the first time in forever. If the reaction isn't controlled with the med I got tonight I have to take steroids, which will make me manic. The reaction has to go away from my eye soon.

I'm angry at the universe. i'm supposed to not focus on what-ifs, but this isn't even a what-if, this just stinks.

So I'm going to do my thing for a while. I will probably sleep most of the next few days; if I don't then we'll see how I feel about writing.

Lamictal, the BIG Uh-oh

As most people know, the great risk of Lamictal is of developing a rish called Stevens-Johnson syndrome that at its worst can be fatal. If caught early with Lamictal is it usually treatable by stopping the med or giving a treatment break and resuming at a lower dose.

I have a rash spreading around my face as we speak. It was about 2 inches on my chin yesterday and my eye was puffy, and I wasn't even positive it was a rash because it was where I couldn't see for sure. I figured at worst it was related to the airborne allergies I'm having. In fact, I was convinced it was nothing. Now......I am sure.

Could be many things. Hoping it is many things. I don't have mess room with my meds. Already wound up with an add-on appointment with my therapist yesterday that was not a fun one.

Doctor (family) at 4:15. I'm a praying person, so please pray if you do that. Otherwise, think good thoughts for me. S-J syndrome could be very detrimental to me. Plus I've seen someone who had it at the most extreme and that scares me, although hers was so, so rare.

Very mean person here

I am in a foul, foul mood. I don't think it's really bipolar related, I think I'm just annoyed. I had a frustrating day at work and have sort of lost my balance regarding work for a bit.

I also still am fighting with bronchitis. I have been sick almost 2 weeks now. It's getting really old. I can tell it's related to allergies because if I stay inside I feel somewhat better, but as soon as I'm outside I start coughing my head off. I'm going to have to go to the doctor again, and I really, really don't want to.

The specifics of my work stuff are irrelevant, but let it suffice to say I'm completely annoyed and probably in trouble and I'm trying to do a good job and I just never seem to.

So I'll be back when I'm nicer.

The compliance challenge 2007

I have an idea. Sarah and I have talked a bunch of times about med compliance, and I've written a lot recently about how hard it is to be compliant when the meds don't work well.

I'm compliant, albeit angrily at times, with both meds and therapy. I fight the therapist sometimes, but I do what he says. I can't even remember the last time I missed a single pill; I think it has been months.

But I have things that I don't do that I should too that would make my life better and which are very important. It is important to me that I read the Bible daily. For a long time I couldn't because it was beyond my ability to understand and pay attention. Finally I bought a children's version that is for 3-5 year olds and it is within my cognitive abilities. (this scares me).

The thing is that too often I put it aside. It's hard for me to read that baby Bible even though I know God doesn't care if it's a baby Bible or not and that it says the same things.

So I'm hereby naming June compliance month at this blog. The goal is to read my baby Bible 10 minutes each day. I will be giving myself one point each day I succeed. If at the end of each week I have 5 points I will get an ice cream cone. If I have 28 points at the end of the month I will have a banana split and there is a place in Cow Pastureville that makes the BEST banana splits ever.

I'm inviting you to join in. You can do so as a support thing or alone. If you're going to participate answer in the comments section what your goal is. Each week (June 8, 15, 22, 29) we'll have a report day. If you want blog publicity I will also list "Team Compliance" members who choose to participate in a post.

Friends and Blogrolls

Today I met a therapist at my newest place of work. She was nice enough. As we talked she mentioned a new employee at her full-time job and I immediately knew exactly who it was; it was someone I worked with for several years. I really miss her; I doubt I'll ever see her again because I never seem to be more than "work friends" with people, at best. This job I don't really even have work friends, just people I get along with.

The last 15 years of my life have ruined all the friendships I ever had. I haven't kept my part of the bargain most of the time and you can only expect people to be so patient. With some friends I totally disappeared. I did that to every person I grew up with. I haven't been back since I left and I haven't seen any of my old friends since a wedding the year after we graduated from high school. I never even got a thank you note from that wedding. I was very close to people I worked with as a camp counselor, but being with me during my manic episode the last summer ended that. That was the first time I was really severely hurt by this illness, because someone I thought I was close to was not adult enough to tell me she had a problem with me or didn't like me. Instead she left before the summer ended, left a few mean things scattered around for me, and then refused to ever talk to me again. I had been supposed to go to her wedding, it was all planned, so I had all these arrangements made with another friend based on the assumption nothing had changed and I had to cancel that. It hurt, a lot. I still don't really know why she decided I was so bad. I don't remember hurting her.

Most of my college relationships were pretty badly damaged during my last year of college when I was severely depressed. The last semester of college I barely left my room and I cried constantly. I was going through a lot of traumatic stuff and I had pretty much decided people weren't worth trusting so I tried to break a lot of bonds.

That lasted through grad school. I just didn't really make friends there. I did spend a lot of time with one girl, but truthfully we were just competing with each other and it wasn't a healthy relationship. I have never had contact with anyone from grad school since we left 7 years ago.

Since I've been working, as I said, I have not made many friends. When you work the weird hours I do (11-7, with an hour commute each way) you don't have much free time. Add in there weekly psych appointments and monthly all day Saturday psychiatric appointments and you get even less time. Plus I need to sleep a lot on most weekends.

I did have a few friends who made it through for a while. One I managed to probably hurt horribly by being so sick when she got married I lost the invitation and never sent a gift or anything. I was suicidal and I think I threw the invitation away because it was one more thing I felt I would never have and that my thoughts could not make her happy. But really she had been my best friend since kindergarten and I hate so much that I did that to her.

I also had a friend who I thought would be my friend forever who I lost because she became convinced that my illness and my reactions to it demonstrated a lack of faith on my part. It took a long time for me to believe that wasn't true, and when I could believe it and that the things she was telling me over and over were actually harmful I managed to end that relationship. I still think about her nearly every day; for many years she was an integral part of my life and it makes me very sad that she isn't anymore. Losing her was in some ways the most painful loss of this whole illness; so many other losses are abstract. Yet she had varied members of her church essentially vote about whether I was properly handling my illness. These were people who did not know me and who based their opinions on her description and intrepetation. She did this instead of asking a psychologist who knew me well and knew the illness and could have been fair. She also did not read the books I gave her and begged her to read, nor did she agree to go to counseling with me, even when I offered to pay and to go to someone outside of my normal practice so it would be impartial.

When that friendship ended I just never wanted to get hurt like that again. It's ridiculously pathetic but I just gave up on people to some extent. Or at least I gave up on mixing people and bipolar.

Now I have started taking tiny steps into being very matter-of-fact with pretty much everyone about my illness. I am just not covering it anymore; it doesn't work and I'm tired and I need to do things to make my life easier, not harder. This means it's not a secret at work with anyone.

I realized tonight though that I have major issues with this. I have been reading through a lot of bipolar-related blogs and websites lately. Obviously some are more interesting to me than others, but I have to watch myself because I have been so isolated for so long (both out of hurt and because I've been so sick with no break) that I keep wanting to think something is "not the same thing I have" if the person is so lucky to get along with a single other person on earth.

I need to make some friends....

Comment Response

In response to the last post, Emilia had an interesting comment:

on a deeper level, to what extent am I a person with
bipolar, vs. I am bipolar. When I am depressed, I am depressed. When I am manic,
I turn into someone that is quite someone else. And for those times when I am
neither terribly depressed, or off the wall manic, what am I? I don't know. I
know this: I have had this illness for most of the years I have been alive, and
for most of them not properly medicated. I am not the person I would be if I did
not have this illness. I would have been someone else. I can't tell you who,
just different.

I'm pretty sure this is one of those things that we're all going to have a different answer, and I imagine the nature of our illnesses defines it. For me I think it is the question I've been struggling so hard with over the last 3 or 4 months. For me the answer is yes, I am bipolar. Who I am is in constant tumult with my moods. It is a rare, rare thing that I get a time like the last few weeks when I am not in one bad place or another. Rare as in this has occurred to any degree about 4 times in 8 years and never for more than 2 months. Even right now, feeling good, I am not who I would have been without this disease, which affected me for so long and then took over my life. And the person I am has been totally created by this illness, as much as it has been created by my parents, my mentor, my friends.

The major thing for me though is that I am many things beyond bipolar. I am a Christian. I am a friend. I am a therapist. I am gentle and I care. I am mechanical. I am a gardener. I love animals. I am a non-smoker, non-drinker. I am short and overweight. I am not afraid to be silly in public. I use exaggerated body language no matter what my mood state. I have wild hair that defines me. I almost always wear blue scrub pants and a floral shirt. I am a thinker. I am a worrier. I'm a writer. I am many, many things. One of the major ones though is that I have an illness and the illness is bipolar.

If bipolar didn't set so many limits on my life than I think I would feel differently. As it is, bipolar is the master of this house. It tells me when to go to bed, when to wake up. It often demands more sleep than I care to give it/can give it. It takes away laughter/gives inappropriate laughter. The same for tears. It causes immense rage when rage isn't due. It causes frustration that I have learned to cover with humor unless you know my humor.

Interestingly I don't think I would feel this way about one pole alone. It is the constant banging back and forth (or in my case experiencing them together, which is just not way life is meant to be experienced) that means that this illness defines my life so much. (Note: I am not negating severe depression or anything else, just saying that I feel it is the combination of the entire system of bipolar that makes it such a defining factor in my life).

It's one of those things that every case is so different though. I feel like reaching the point where I feel that I have accepted that this is an integral part of me is very good for me, but it goes with the part where I have had to accept that I just have a rotten variety of this thing, that I'm running out of current treatments, and that it is very likely I am going to have to wait for modern medicine to catch up to me. It goes with the part of my life where it has been time lately to define what my abilities and limits are, and to accept that there are limits directly caused by the illness.

This is one of those things my ideas may change very soon on. But for the moment I'm glad to know who I am for a little while. And I think that's what this is really about. So maybe the answer is that it is all a choice?

I'm not sure.

In which there are too many quotes

In all my years of both my psychology degree and my OT degree it was drummed into my head to always "put the person first". We were taught to never refer to people as "bipolars" or "schizophrenics". Instead they were "a person with bipolar". Nursing home patients were supposed to be called "residents", mental health patients "clients" or my favorite, "consumers".

Now that I am very much a "consumer" I find this term obnoxious. I am bipolar. It doesn't matter what you call me, I'm bipolar. I know I'm a person, and using awkward wording to supposedly give me respect somehow seems to take away the respect of assuming I know I'm a person without being told.

I believe that if you are being treated for something you are a patient. Otherwise who differentiates who has patients and who has other things? Consumers seem to be only people with disabilities. So why separate us further in an attempt to make us not be different? It is true some services are only available to those with disabilities; it makes sense to refer to the people using those services appropriately for their needs. For example, I am a "consumer" of vocational rehab services. But why not just call me a person with a disability who is using those services? As far as the rest, my psychiatrist is a doctor and so thankfully I'm a patient. But really, what's the difference between the psychologist and psychiatrist? (I do know, but they are treating the same person with the same issues and working together to do it). My psychologist actually uses "patient", I think because he has a lot of hospital experience, and I'm so grateful for this because being called "client" grates on my nerves.

I have also noticed that most people with mental illnesses don't do this whole "I'm a person with bipolar thing". I not at all alone in defining myself as "I am bipolar". The whole point, according to my teachers, was to prevent patients/clients/consumers from thinking of themselves as only their illness, but I don't think that what we as professionals refer to someone as has much effect.

I define myself in many ways, as does every other person I've ever met. The most disabled people I've ever seen define themselves multi-dimensionally. I cannot think of one person, ever, who merely saw himself or herself as "schizophrenic" and nothing else. I do give my illness a lot of weight, because it demands it. Bipolar illness does define a great deal of my life. It is not who I am, nor does it dictate how my life shall be, but it does play a major enough role that I'm comfortable bracketing my name with it, just as I'm comfortable bracketing the end of my name with my professional credentials.

I want to be called bipolar. I am proud of myself because I live with this illness and I manage. I do things frequently I am amazed I can do. I don't want the thing that has the most influence over how my life is going to be downgraded. I was going to be a totally different person before I got sick. Now I am bipolar, and this is my life. It's not that much different than at one point I was going to be a teacher, and then I changed and now I'm an occupational therapist. Don't get me wrong, it's not that I love this disease, but I want it to be fully recognized as a major factor in my life.

Call it like it is....

Figuring it out

I have probably bored everyone who reads regularly to tears with repeating this, but I really am getting it. And I'm so proud of myself...

After so many years of trying to do everything the same as I would have without bipolar I am finally starting to let there be many limits on what I do. I'm starting to understand that my best IS my best, even when it's not what I would choose.

And it shows in such silly little things. Tomorrow I will be staying home sick again. If I pushed hard I could go back tomorrow, but I'm still very tired and weak and another night of cough syrup is not going to hurt me (can't take it before a work day). I am still coughing very hard, my nose is still running, and my head still hurts. All of these are reasons to stay home.

But I have never taken 2 sick days together. Never. Almost always if I take a sick day I offer to cover it on Saturday. Not this time.........

I am so proud of myself.

Sometimes depression has a good outcome

For she who is drugged I sure am writing a lot. The thing is that I take this stuff every 4-6 hours, but mainly it only lets me sleep about an hour. The rest of the time I'm sedated and bored. I don't feel like doing anything, I can't concentrate enough to follow a book or tv, I just am existing.

I had another good psychiatric visit yesterday. I think my doctor understands my fears that soon I'm not going to have treatment that is appropriate and effective available for a time. She is helping me to remember that it will only be for a while because new things are coming. However, the next one expected out is already on the list of things I can't try because it is a modification of Risperdal which I had a bad reaction to (surprise). But she's willing to help plan what will work during that time, and to be honest enough to not make empty promises or statements that I shouldn't worry that I won't be able to work for a substantial period until that happens. She's letting me develop plans that let me feel this is controlled and I appreciate that.

The major news was that I finally, finally didn't have a med change. That's the first month since at least October 2005.

We also discussed some of my preferences if I am unable to make decisions for myself. All this is now in my chart so that hopefully someone will see it and listen if I can't speak up. My feelings about having someone who is not my doctor and has not been involved in the very careful planning to get me here messing with anything is also documented, as my suspicion that my doctor would only be peripherally involved if I am hospitalized is correct and I have good reason to fear an inexperienced resident. I'm also going to get the legal paperwork in place for my mother to carry out my wishes; this is a goal for this summer. Hopefully it doesn't come to that, but I want it to be there if needed and I want her to have what I want clearly available.

I'm finding I have many firm opinions about things I didn't think I cared about. One is that I have now been on lithium and off lithium. Lithium is not a drug to me, lithium is something required for me to function. I can't explain the feeling, but it is there. I need Depakote to control my behaviors, but Depakote doesn't control whether or not I feel human as lithium does. Lithium has a high chance of hurting kidneys over the years. At that point you go off and hope something else works. I realized that my choice is to push my kidneys. If that means I die younger than I would have without lithium, I would rather die at that time than spend 20 years institutionalized with bipolar dementia and the psychosis that goes with it. I've seen this combination; it is the saddest thing ever and I've worked with dementia patients for a long time. (Ok, the saddest are the 30 year old dementia patients, but this is next). I never thought I'd even think about this kind of thing now, but it matters.

I also do not want my mother to ever have to decide about treatments. The remaining treatments are not pleasant and I cannot imagine her having to sign a consent for me to have ECT or to take Clozaril, a drug that requires close monitoring for safety. I don't ever want her to question whether she did what I would have wanted. So I am going to get my decisions in writing where she will be following what I want.

Finally I want to protect myself from myself. When I'm in a mixed episode I'm not exactly open to suggestions. I'm afraid that I won't be able to use logic and that if I'm hospitalized my doctor won't be there to protect me. I've said all along that Zyprexa is my last resort drug. However I will take Zyprexa and any other drug, just so that other options are tried first. This decision is based on what I have seen clinically and have read about the drug and my doctor has agreed, especially since nobody can promise any good results from antipsychotics after poor responses to every one I have tried. I am afraid though that someday I could need Zyprexa and be too sick to understand that it is time for it. If my doctor is around she'll get me through that, but without her this would be a major issue. If it is in writing that I will take Zyprexa and am ok with medications being given as injections or by whatever means necessary then I will get what I know right now is a reasonable option.

I also want my desires known about what can and can't be done to alter my meds. I am firm about keeping depakote and lithium, as tiny as my dose is. I want decisions about most things approved by the doctor who knows me well. I am open to experimental treatments that allow me to stay on my base plan and which my doctor says are worthwhile.

I'm also trying to get the courage together to order a MedicAlert necklace. I worry about having a heat reaction and nobody at work knowing what is wrong. I also worry about having anything that says bipolar on it worn around my neck. I'm tempted to have it just say multiple med allergies, but that might prevent me from getting fluids immediately if I get sick at work. I'm concerned because I've had a few dizzy spells when very hot this year and it's still spring.

I am a whole different person about so much of this than I was a year ago.

It's weird to think about all this. Controlling the bad stuff is much better than worrying about it, but it is still just weird that I'm talking about this and she's encouraging it. Finally I'm in charge of my illness again.

The best invention

I am a complete baby about liquid meds. I hate them and always have. I have so much trouble gagging on medications anyway that medications that taste bad are really not helpful.

Several years ago one of the ways that was discussed to get one of the medications that made me sick in was to liquify it and then use something called FlavoRx to flavor it. A lot of pharmacies now have this option and it costs less than $2. I arbitarily picked bubblegum.

I'm not saying I want to drink this stuff. It is still about 40% alcohol or something and doesn't taste great. But I haven't gagged yet.

And now I'm must go get high yet again.

That doctor needed to repeat kindergarten

Please forgive me if this has lots of errors or isn't well-written. I'm incredibly groggy from cough medication and just generally being sick. I can't really do anything but lay still. I sleep about 1 hour of every 4 between doses and otherwise I lay still or dose. Fun, fun, fun.

But I wanted to write about this because it makes me so angry. I went to urgent care yesterday. Every time I do something like this it is the same, so I was prepared, but it still is so ridiculous.

When I started seeing my normal family doctor I told him up front that my psychiatrist will be guiding my treatment for just about anything. My psychotropics are vitally important and are volatile. I see her more frequently than him. She specializes in the psychotropics and knows the interactions and potential problems. I also need him to trust me that I have valid reasons for questioning things, and that I am going to argue when I'm sure I'm right because I know that he has textbook learning and little practical experience with these meds, particularly in these combinations, while this is my life.

This doctor yesterday got all bent out of shape when I mentioned the psychiatrist had suggested I probably needed antibiotics. ("Well if she knows how to treat you why didn't she just do it?"). If it didn't hurt to talk I would have had a lot to say about that. I feel pretty strongly about primary care doctors who would dare to deal with my bipolar (aka never going to happen); I don't really want my psychiatrist doing primary care either since she is kind of a long way from that part of her training. (Not that she hasn't prescribed a few things for regular care over the years when I had trouble finding anyone who would take me as a patient at all, much less listen to me). There's a reason for her having reminded me I needed to get antibiotics; I have the same thing happen all the time. Because I am limited on meds I can't take anything to dry up the mucus, which means my sinuses quickly become bacterial cesspools. There is an extremely good chance that next week I'll need antibiotic number 2; that would be pretty typical for me.

I am not out to just get antibiotics. I'm a healthcare professional and I see resistant infections all the time and they are not pretty. Until bipolar I had gone nearly 15 years with only 2 courses of antibiotics, one for walking pneumonia and one for an infected toe. I am far more aware than most people of the risks of ingesting any medication for any reason. But when I clearly have bronchitis and I clearly need treatment for that ASAP and I am spending $50 on an urgent care visit because I was unfortunate enough to get really sick on Saturday, I think it is fair to respect that I'm a healthcare professional (which he commented on and argued with me about what I did so I know he knew this), that this is fair.

Mainly though, I'm just sick of doctors fighting. It's why I'm extraordinarily loyal to my family doctor; he doesn't do this. Ever since I started psychotropics it's been like this. The psychiatrist from hell who first gave me Ativan I had self-referred to. First my family doctor, who I really liked but who was not doing a good job treating my yet-to-be-diagnosed bipolar, was upset that he hadn't been consulted (um, suicidal? I did what I needed to do) and then that I was on something "addictive" instead of what HE would prescribe, which was low dose Seroquel. The thing is that benzos are not addictive if taken as directed for the proper symptoms in a person without a history of addictions. (that probably should be qualified more but I don't feel like it). It's not like Seroquel, low dose or not, is easy to deal with.

So, that's my story. That urgent care man, who never introduced himself which makes me mad as well, needs to go back and learn to share, and also learn to accept that he's not always the best at everything. The psychiatrist I see every 4 weeks and have for years is always going to be more aware of my body than anyone else......

Not sure why this is so threatening.

My gift to you

You know you sound bad when 3 minutes into your psychiatric appointment the doctor gently asks if your family doctor has heard your cough and strongly encourages you to be checked for possible bronchitis. Which I have now been diagnosed with, after a painful urgent care visit and very, very long wait in Walmart pharmacy. I will be spending the new few days in a groggy world of cough syrup and antibiotics. My experience with this previously has been that my options are so limited I wind up drugged to the gills with the only thing I can take, so this may be it for a few days. Who knows though, I have things I want to say and maybe I'll have some awake time.

Anyway, for those who are struggling in any way and are considering whether the government might assist somehow, check out. You go through a survey and it comes up with programs you may be eligible for. I had 25 results, some I had never heard of. Like I said about vocational rehab it can be well worth it to take advantage of what is available. Sometimes I feel like I shouldn't because I make a lot of money and somehow it feels weird to take advantage of free stuff, but I guess I pay those taxes and the programs are there for my disability as much as anyone's.

I'm also working very hard on establishing things like a durable power of attorney, a living will, and a mental health living will (called something else I can't remember). I need to do that during a well period, this is one, and so this is my goal. Groggy is probably not the best way to learn, but I think I'm finding out what I need to know.

Ok, sleeping sitting up. Goodnight.

Med Compliance Rule 8940923B-1

After several days of no meds you'll forget EVERYTHING.

Good times abound

I read somewhere that an unusual side effect of depakote is an increased occurence of upper respiratory infections. I don't know if that's true, but I never got sick until the last few years. Now I'm hacking my head off at least 4 times/year. The only thing is that I work with a lot of germs. I catch things my co-workers don't, but my body is under more constant stress.

Once I get sick I pretty much can't take anything. Tylenol, which is useless. Claritin, which has a questionable effect, as does nasal spray. I have a prescription for Vicodin to use with severe coughing; tonight that is coming out because I'm coughing so hard it's gagging me.

I feel terrible. I want nothing more than to sleep for several days and I can't sleep because I have to be upright to breathe.

But it is a happy day because I am going to see the psychiatrist and I can beg to be allowed a few does of something more effective than hot tea at cleaning out my lungs.

Darn germy patients (and this time I know exactly which one....:)

Medication Compliance Rule 7787494A

If you do not take your meds for several days, something bad will happen. The more important the med to stability the worse the news will be.

Vocational Rehab is a freebie

Emilija mentioned in a comment a few things of note. One is that I think telling employers early is a good, good thing. It is also good to get things in writing. I cannot work without certain accomodations (basic things) and my last company let me have them for years, then started trying to back out and fighting me about it not being required that they accomodate, etc. It is, and if it's in writing they have no outs.

Vocational rehab is a state-funded program available to anyone with a disability. It's got different names in different states, but vocational rehab is the basic name. (I use vocational rehab here to help keep my state unknown). The purpose is to find ways for people with disabilities to work. In my case they are trying to find accomodations to help me meet job requirements I currently can't. They are also helping me to determine if it is appropriate for me to continue working in the environment I work in, or if I need to consider a change. If change is needed they'll help me figure out what else I can do. They will assist with educational needs, equipment, advocacy, education of the company, mediation, providing a caregiver to assist to meet needs, whatever is required to let people work.

The only requirement for assistance is a documented disability which affects your ability to obtain or maintain employment. In this state you can refer yourself or someone can refer you. I referred myself. I had to wait about a month for an appointment, and then I filled out a lot of paperwork and releases. My psychologist had to submit an evaluation which was kind of hard to read because he had to talk about my lowest and highest abilities, and it was scary to see how low I can go; in fact he marked that when ill enough I can be poor in all areas listed. I can't remember if anyone had to send something in; I did get something from my eye doctor because I have visual issues as well.

After that it's been a twisted path, but now we're on track and hopefully soon someone will know how to help me.

Vocational Rehab Update

I haven't talked much about this lately. For a while it just took a backseat to my problems. It also was something I was emotionally processing.

This Friday I go in and with my counselor will write my service plan. I have no real clue what this means; I read about it when I started with this thing, but that was so long ago I forget. I suppose I need to get that book back out.

The thing that is still hard is that I will be getting an occupational therapy evaluation next. Professionally I'm excited because I know it is the best possible step. The OT will follow me as I work and evaluate how I am doing, what is difficult, and how that can be improved. There are a number of people qualified to do this, but in my case an OT certainly makes the most sense. They were so respectful too; they found someone that is from far away so that I'll be highly unlikely to have professional contact with her. And she is someone well respected in the field.

However, emotionally this is challenging. Each step of this admitting I need help this is hard. But this part is a little harder......One of my greatest fears over the years has been that I would need OT to deal with my bipolar issues. I think it is because in my world, which has included the psychiatric world, using OT to handle psychiatric issues has indicated the issues were substantial. And I know mine are, so I have no idea why this bothers me. I have worked on this enough to finally agree that it is not a good enough reason for hospitalophobia. But it is much harder for me to need OT for this than it would be for an injury, and far more difficult than if it were PT for an injury. Nonetheless, the consent is signed.

The great irony now is that I am doing so well that I am going to see if I can hold off on the OT until I am more symptomatic. Right now I am not doing as well as is optimal, but it is about as good I'm I'm going to be, ever, so the results don't seem likely to be very accurate. Yet sometime soon I'll need them, badly. I have no idea what they'll do to resolve this.

Nonetheless, anxiety and being too well are not exactly the worst things ever.....

Telling the therapist

I was really afraid to tell my psychologist about the pills I got rid of. I was afraid because I thought he'd be mad that I had concealed having them, essentially blatantly lied about it more than once, and because I had not been truthful in saying I so many times he didn't need to press hospitalization because I would not/had long ago decided not to harm myself while the entire time I was maintaining a hoard of harmful meds. I was also afraid because now he knows that I have done this, and he'll know to watch for me to do it again. I truly think something has changed in the last months that means I'll not need to have that kind of thing anymore, but nothing can change that will make it so that I'm likely to avoid being suicidal at some point in the future. One of the things I was amazed by in this article was the statistic that 25-50% of untreated bipolar patients attempt suicide and 11% succeed. I knew that the death rate was 10-15%, and I knew the attempt rate was high, but I had no idea it was THAT high. The rate does go down with treatment, but incomplete results leave one still in a risk category.

My psychologist and I have had a few "arguments" regarding this topic before. He strongly enforces the "I cannot trust you because you are high risk and a generalized statement does not mean anything during this specific episode" thing. The expectation that I be very upfront about these thoughts is also very clear. I've never had a therapist as forceful about this as he is, and while I hate it and will never, ever tell him this, I feel safer this way. I prefer to think I'm stronger than those impulses. But practically I'd much rather have no possible way to make a 30 second wrong decision that either lands me in the hospital (hospitalophobia continues) or ends any possibility that things will improve.

I really thought he'd be upset and make me explain why I had lied for years to everyone about having pills, the intention, the thought I might ever want to use them, etc. I was scared to admit that flushing them made me cry. Instead it was very positive. He did not yell at all. He did not even scold or in any way leave it so that I did anything but a good thing by getting rid of what was dangerous and telling him.

For a secret that I didn't really even think much about having (I sometimes didn't really remember my supply, much less what was in it, and I had no clue how much of one of the meds I had), I am ridiculously glad I do not have it anymore. I guess it's like when I decided to start loudly telling people "I'm bipolar. Like it or not, I am".

Which is a lot of what the last year has been like. I told people before, although not as freely, but in the last months I very painfully accepted that I AM bipolar.

Back in graduate school I would spend time when I needed to remember why I was going through that ugliness I would write "Just Me, MS, OTR/L". My title now that I am fully qualified. I had all these ideas about who that person would be and I was just waiting to get started being her. Instead I graduated, got a job, started studying for my boards, and became very, very ill.

I kept trying to be "Just Me, MS, OTR/L", the idealized version. That person just doesn't exist. And trying to be her was not good. Realizing this has not been fun. I think between February and April I must have stated to various people, in various offices, in tears every single time, that "If things don't change I am about done with the work I do. I can't keep doing this". The psychologist, I believe, was getting a tad frustrated hearing it. But what I really was doing was making myself change what I was trying to do. I'm done pretending and now I am Just Me.

Best of all the psychologist told me that yesterday was the best he has ever since me, in over a year of often twice weekly treatments.

My medication summary

I realized this would be useful for me to have, both because it gets harder and harder to keep track of all the meds I have taken, and also because I sometimes need reminded that I have tried, and tried hard, to get well. But I wanted to add it to the website as well so that anyone who might profit from my experiences (or the magic person who can explain them) can.

So, without further ado, we launch my list, which I believe will be a seperate window.

This is posted in the links list to the left as well for future reference, should someone want that.

Suicidal Ideation: My challenge to you

One of the main reasons I was FINALLY diagnosed was that I became more and more aware in May 2002 that the depression that had allegedly gotten better was still there at a very deep level and that although I was able to smile again, I was spending a great deal of time planning how I could kill myself if and when I became severely depressed again. I knew I very likely would and I just could not stand the idea of living through that again. So I finally admitted how bad I felt, accepted better medication, and started therapy after years of refusing.

For that first year I struggled with suicide. After I lost my best friend because she thought my illness was due to things I was/wasn't doing, I just could not see what value I had and I wound up fighting very hard to stay out of the hospital. The only reason the doctors weren't more forceful, I think, was that my insurance didn't cover psychiatric admissions so instead they saw me more frequently outpatient.

During that time I realized/was taught about the consequences of suicide. I was reminded over and over that before doing anything that was a last option I needed to be sure that was what I really wanted. Ultimately that turned into something I use even now, a simple but very effective tool. Essentially I have a list of things I must do before I can harm myself. I have several people I must tell to see if they can help (a friend I know doesn't panic, my therapist, my psychiatrist). I have to find care for my cats; it is not right to leave them without care. Bills must be paid. I don't really remember the original list, and the list can be modified to meet current circumstances. It can also be extended by the therapist and myself to go on and on so that eventually I reach a safety zone. This works so well for me that I have never gone beyond call a friend, despite having wanted to die plenty of times.

Another reason that knowing I have a lot of safety valves is that I know how to do this effectively. I know meds well. I know anatomy. And because I'm on such high doses and go through so many meds per year, I have access to a lot of harmful stuff. I need to constantly make safe decisions.

A year ago my therapist forced me to give him a carpet knife I was trying to use in a home improvement project. Much, much later, after I was not angry and humiliated anymore, I admitted this was a good idea. Not because I wanted to hurt myself, but because I was dangerous to myself. Walking wasn't so safe so I guess sharp objects weren't so safe. I rambled on about was he going to want my kitchens knives next? My forks? Was I allowed to operate a hair dryer? But he was right.

It wasn't until much later that we talked about how amazed I was that I made it through last year without really wanting to hurt myself. Usually at least at some point the rage turns in and I no longer want to live through the mixed episode, although I can talk myself out of that rage. Last year it just didn't build.

Tonight though I was digging through my nightstand for something. That is where I store all my pills. I realized that over the years I have stockpiled plenty of pills that I really shouldn't have. I had a bunch of sample boxes of Geodon, which I took 3 years ago. I had a full bottle of Trileptal. I have sleeping pills. And I have my current meds.

I realized that even though I've gotten far beyond really wanting to hurt myself I have been afraid to totally let go of that for all these years.

So I flushed them. It was actually harder than I thought. I even considered handing them over to my therapist, but since that would open me up for the whole monitoring thing and I have no desire right now to hurt myself ever, I did it myself.

I realized I'm probably not the only one hanging on to bad things. So that's my challenge to the mentally ill world: rid yourself of dangers. Turn over that carpet knife. Flush the pills you don't take (and be prepared, capsules don't flush easily). Do whatever it is to make yourself safer the next time things are out of control.

I did. And I'm glad. Glad enough I'll even tell the psychologist, who is going to yell at me. But you only have to tell me. Or not.

Just do it. Please.

Go here

I just wrote a beautiful post about this webpage. For some reason I totally messed it up and did something with HTML which I do not have a clue about. So instead of my insights I'll just send you there. I learned some new things about my illness and it helped my new process of developing insights into "oh yeah I DO do that". Turns out I've been kind of blocking out many things over the years and that is part of what has been haunting me during my recent depression.

It's worth reading.

When side effects go too far

I just put away my nice, "shower fresh" women's deodorant and replaced it with unscented men's. This is hopefully going to keep me from reeking by 8 pm.

I think my meds are telling me I should be a man.

Now why didn't I think of that?

Tonight's post is sarcastic. But I deal with it remarkably often.

I'm about 75% open with my illness now. I don't casually mention it to anyone, but nearly everyone around me knows. Yet sometimes I don't feel like telling, and some people I just trust my intuition that I don't want them to know.

One of them is this person who does fill-in work for us. I worked late tonight and he asked me why I was there so late. I said overtime, and then said something about really needing to get home because I was going to be late for meds. I just didn't think about it, everyone knows. And personally I don't ask about people's meds.

But he did, and I gave my standard bit about not sleeping without meds, etc. I usually tell people it is an unexplained thing. Since my sleep issues are different than a lot of bipolars there is an element that is unexplained and I just talk about that. I explain I use depakote to avoid addiction, and that I have to take enormous doses of it.

Generally I might get one or two further questions, but people also seem to realize I don't want to talk about it. Tonight though he decided to be Mr. Helpful. And so he suggested I exercise.

Um, because I would RATHER take harsh medications that put my body at risk? Because that never occurred to me? (aka just because I am overweight doesn't mean that I was before I needed meds).

Apparently "stupid" is tattooed on my face....(keep in mind this comes from someone who earns a LOT of extra money working in nursing homes yet tells me repeatedly how nursing homes are the worst place to work and all sorts of problems keep it from being the best therapy. So leave. Only people who love nursing home work should do it.....)

Oh....

This is kind of a sad post so if you are sad you may want to skip it. It is about the very downside of my work. Sometimes I need a way to remember life lessons and this blog works as well as anything else.


One of the most humbling things about working with the elderly is that you are there to work with them, help them recover or function at their best, and yet you learn so much. I've been fascinated this week with the story a patient was telling me about eloping to be married and keeping it secret for an extended time. The neat part is that she did this one year before my grandparents did the exact same thing one year later, and in the exact same place. I cannot wait to learn more.

But today I figured out the lesson another woman has. This woman is dying. She has had many, many serious problems for a very long time and knew she would not live much longer. She has always bounced back. However, a series of recent illnesses led her to decide no further treatments and she went on hospice. One of her problems is absolutely fatal without treatment so she knew it would not be long, often just a few days.

Death is generally very, very peaceful. Although I'm sure I do not remember every patient I've been around because there are too many, I remember only 2 that were close to this horrible. One of those patients had cancer that had invaded her spinal column causing nerve pain that was hard to control, but it did become controlled after a few days. The other choked to death at dinner, requiring CPR. CPR is not fun to see.

But this lady now is tough. In fact she is too tough. Death does not seem to happen until the person really lets go and this lady just keeps hanging on. It is so awful to watch I've had nightmares about it and ask daily as soon as I arrive "did Elaine die?". It is exactly what I used to think death was. Until the last few days she has yelled and moaned and cried. Usually they can pretty accurately guess when death is near; she has reached that point several times, yet she keeps going on. To my knowledge she has had no nutrition or fluids in a week or more. Even more amazing is that from the things I usually look at to guess if death is really close, she may still go on for a while. Her breathing does not indicate imminent death, nor does her color. She wants to die, she'll say so and plead to do so, but she's not really letting go.

Thinking about her today I realized that I've always had the wrong idea about something. I thought "the tougher the better". It's basically the same thing I wrote about yesterday, where I am very slowly learning that pushing myself to the edge of my ability to cope is not happening. But this is a horrible, horrible, visual of why sometimes it is best to let go.

Sometimes tough is very, very bad.

I decided to decide

I had a good session with the psychologist today. This is especially good because I have been dreading this as I knew we were beginning a new topic I didn't want to deal with today. But I feel so good I was able to handle it well and to focus, and those things made it a better session.

Somewhere in there I started to listen to myself. I was talking about how I have been so terrified lately because it has seemed too much that there may not be many more treatment options, I'm trying meds that have been scarily unsuccessful before and will have to determine at what point to quit something that helps, and that it has been very hard because I took a job that is much easier, reduced my drive time, etc. and I still have felt so overwhelmed. All of this is true.

But now suddenly I am not so freaked out. I realized why while I was talking; I'm starting to change how I'm doing things and to accept that my energy is even lower. I'm starting to restrict what I take on at home. I looked at my pay stub today and realized that I am working more like 73-75 hours per pay period and that financially this is OK and I need to accept it is better and that 40 hours is just arbitrary (obviously this is a benefit of my job).

I got home after doing today's "one thing" (picking up pet food, which now costs double what it did before the recalls-ugh), and was dismayed as per usual by my house. Cleaning as much as I can does not do enough and I can't stand the noise of the vaccuum. I also get totally exhausted trying to clean my kitchen floor.

I've thought about a cleaning service before, but have been embarrassed. I also struggle with paranoia about people getting into my things (not that I have anything to get into). So I made a decision tonight. That is something it is time to work on. It is time to get help. What I really need is someone who comes on the day trash goes out, does some general cleaning, and puts the trash out (something difficult for me). I know there is a company in the City that does this but I don't know if there is anything similar in Cow Pastureville. I'd rather do this through someone who does it as a caregiving service than through Me*rr*y Ma*ids if I can because then I will feel less guilty on the days that things are totally horrid.

So that's my summer goal, to decide I CAN do this.

Check this out

I just learned that a reader has done a post regarding the discussion of compliance here (Sarah, you may recognize the title of his post).

I usually don't link to anything that I haven't fully checked out, but my initial scan seems good, I'm excited to share this, and I won't be home until late tonight to read further. Until now, I do know what I checked doesn't turn into porn.

So, check this out.

It's gonna be a great day. This PLUS I brushed my teeth and my Rice Krispies are still happily digesting!

Moving on, Looking back

No more puking so I figured it was time to get a post up that did not focus on that. Instead I am looking back a little.

Last week I talked to my psychologist about how part of what is difficult is that I don't have a good context to apply to "the worst I've ever felt". I know that I've learned to define this differently a number of times over the years. I am pretty sure that how I felt the last 2 months is pretty comparable to what put me on disability 3 years ago and this time I did not miss one day of work. The thing is that a year ago this time I was very, very sick and I have almost no memory of it. There really isn't all that much I remember from early April until late June-early July. So he read me some of his notes to show me. They were kind of scary and I know that he was editing. I still don't remember more than I did really aside from now I've got those stories, and one thing he told me about I did remember that I was very angry at him over, but that's about it.

This week has a landmark in it. I went on disability on April 24 last year. For the next few weeks I fought to get back on meds, get to my real doses, and get levels drawn. To get levels drawn I had to go 5 days without throwing up. It was really hard but I did get the levels done on May 8. On May 9 I got a call from my psychiatrist telling me she knew why I had been so sick, that my lithium level was really high and my thyroid was no longer functioning. I made an appointment with my regular doctor to deal with the thryoid the next day and lowered my lithium dose per her instructions. It did not matter. That night I was so very sick. I thought I would die I threw up so much. I laid on the bathroom floor and cried and threw up so hard I wet my pants and laid in a puddle of pee because I was too sick to clean up. After hours of this I finally was able to crawl into bed, and after a few more hours I could tolerate tiny sips of water. My doctor saw me as an emergency at 8:15 and remarkably I wasn't seriously dehydrated. Nausea medicine, clear liquids, and several days without lithium finally helped.

It's not an anniversary I want to celebrate. But it certainly does put this year in better perspective.

Lamictal, the grimness begins

I sincerely hope this is just a one time deal (really two time), but this morning I felt nauseous. I went ahead and ignored it and felt better by the time I was mostly ready, but as I brushed my teeth I suddenly threw up in the sink (projectile vomiting too, just to make it more special).

This is not good for several reasons. The most obvious is that vomiting just is awful. I'm an expert at it and it does not seem to become more fun with practice, although I will say I've got good aim after the last few years. The next is that when I was on it before the vomiting began exactly like this; morning nausea with vomiting the second I brushed my teeth. Ultimately this led to horrible problems with oral hygiene because all the kinds of toothpaste I had used were associate with vomiting, so I had to keep looking for odd flavors of toothpaste and just brush the best I could. After a while before I would gag/vomit with toothbrushing and then again during the morning. The last is, well, I don't WANT to throw up. And my stomach still isn't good, consistent with my previous experience.

I am trying to not think about it, because if I believe I'll get sick I will. I know that this was part of my problem the last time through Lamictal. But it's hard not to, when I knew from the outset that this was potentially the problem and that if it happened I would have wasted 5 weeks or more trialing something that didn't work out. At least with other meds it usually is fast.

And for all I know it's lithium. It's warmer and maybe I've not been drinking enough, although I've been pretty consistent I think. Or maybe it doesn't matter how much I drink and I'm going to be toxic again. Hard to know.

Regardless, I'm irritated. I'm irritated with not knowing, and I'm irritated with my body for not working right.

I NEED this to work. The last week has been so good, but it is a precarious balance with my depakote level not being as high as it should be. I've been on depakote far too long to not know that if I'm not at least at 120 I will cycle. I'm currently at 98. Lamictal and a few revelations chased this depression away, but it will be back sometime, and I need the meds to be working. I do not need to vomit.

Pill calculus

When my meds do not behave (see last post) and frustrate me, I have to start reciting reasons to not even think about giving up on them. Taking meds just isn't fun at best. Taking psychotropics is even worse than most meds because of the side effects. Taking meds when your body is like mine and every med is a new adventure into weirdness is even harder. But after the first 11 months I accepted that my body doesn't react normally and I'm so used to it that I forget this is the reason behind the frustration and that the frustration is not because of the meds themselves.

Tonight I counted the number of medications I have taken. Including a few antidepressants I took before my bipolar diagnosis I have been on a total of 28 psychotropics that I can remember off the top of my head. I have also been on 11 medications to deal with side effects or to attempt to handle the nausea and vomiting associated with my lithium toxicity last year. That is a total of 39 meds, most in the last 5 years. And with most of those meds I have taken pretty much every dose imaginable, and in the last year we have started creating our own doses by cutting pills into small pieces, etc. This does not include meds for the increased numbers of respiratory infections that is a side effect of one med. It also does not include multi-vitamins or vitamin B pills which I struggle to consistently take. It also does not include the 3 meds which I have tried, had major issues on, and recently resumed taking out of desperation.

I am 31 years old. Thanks to bipolar I have taken nearly 40 kinds of meds in 5 years. You do the math.

Please explain this/why I want to quit meds sometimes

Well, my plan was to not write about this until I knew more about what was going to happen. But I now am so frustrated that we'll skip ahead.

This is my depakote story: Before I was diagnosed I was on lithium to make my antidepressant work better (it did not). When I was diagnosed I joined a clinical trial studying a cocktail consisting of lithium, depakote, and lamictal in rapid cyclers. I began depakote and after some time on it was given lamictal or a placebo, then later lamictal for sure. The problem with depakote was that with the regular version I was taking a lot and my blood levels were not therapeutic. (50 is the minimum, mine were in the low 40s). At a high dose we finally hit 49, but they were going to take me off depakote thinking I just processed it too well. Someone decided to give it one last chance and gave me the ER (extended release) version, and for whatever reason that worked. For a while my levels were around 80-90, but over time we learned I did better with a higher level (125-130). 125 is the alleged out limit for this stuff, but for bipolar patients it's ok to carefully go to 150 with liver monitoring.

For the past 3 years I've been right around the 125 mark without problems. Then last year happened and I was on and off meds and at different doses and apparently that wasn't so good for me. One of the bad things with being bipolar is that if you go off any given med you have no guarantee that it will ever work for you again. But with dose increases depakote has seemed to work ok. The thing is that I have stayed very unstable and I rely on depakote to handle much of that.

In December I had a low level. We thought it was strange, but because I was not doing well we added another small amount of Depakote to the mix, bringing me to a total daily dose far above what one would expect for my weight. There were complications with my levels (lab lost 'em) and so the levels from that increase just came back. 116, yay. We thought this was a good sign and since I still felt bad and we'd decided to aim for around 150 we upped the dose to 2500 mg (usually the max dose for someone about 30 lbs heavier than me).

Today I got my results back. 98. I am taking 5 enormous pills per day, and my level is going DOWN. Explain that.

Everyone has been amazed at my lack of side effects. Well, I guess we know why now.

Oh yeah, as for the part I wasn't going to go into yet. I haven't heard from my doctor about this level yet. But when I saw her Saturday she was trying to find ways to better monitor how I metabolize this stuff to see if a pattern can be found or if there is a way I can alter my dosing as needed. Much blood work probably awaits. But this probably seals that deal, as it shows there is more than likely a problem.

This is when taking meds feels so pointless.

Doctor or casual?

Yesterday I had a conversation with someone at work who happens to go to the same psychiatrist I do, which is something of a coincidence since she works in a huge city at an enormous teaching hospital. However, she also has a reputation for helping the people who are hardest to treat, so I guess finding her isn't so hard.

Anyway, she was somewhat shocked that I call this doctor by her first name. I have for a very long time and nobody seems to think much of it. She certainly doesn't. I don't know how or why I call her "Sandy" but it seems more in line with the relationship. I have to literally trust her with my life; formality seems a little odd in that case. She is someone I see every 3-4 weeks and this is the way it has been for 4 years and will continue to be for a very long time. I spend a lot of time with her, not just the quick 15 minutes of a regular doctor's appointment.

The whole conversation yesterday was odd; any time I have talked to this woman it has felt like she had some "worse competition" going, and now it was the "I need Sandy more" competition. It bothered me.

But anyway, am I totally odd? What do others call their psychiatrists?