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.