Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Monday, November 07, 2011

That's over. I'm tired

The sleep study was interesting.  I guess.  One of the first things I did was discover the side of my toilet was covered in blood.  Like as in someone fell and hit their head blood.  I pointed this out to the nurse who didn't care.  Her big offer was to get housekeeping to come up and since I can't breathe their chemicals I declined.  I am so annoyed that she did not bother to get a wipe and clean it. And I don't believe there is any chance that wipes weren't around; they are required for hygiene purposes and I have cleaned any number of messes over the years to ensure people were comfortable.  My nurse was not my favorite person.  Not very good at ensuring privacy, kept not listening to me say "yes, i've worked in healthcare for 11 years, I do indeed know what this is" and continuing to explain at a very simplified level.  They also say lights out is 11 and I need that because of how my meds work, but come 10:15 suddenloy I was in a dark room.  So the time it took to fall asleep had a lot to do with I have been reliant on meds to sleep for most of my life and they weren't given adequate time to work.

Otherwise it was ok.  I had trouble sleeping on the wrong side of the bed.  I have no idea what happened through the night; I know once I woke up on my back and rolled over and took a bit to fall back to sleep.  I'm pretty sure I never was up because I think I'd remember asking the eerie little green video light to please unplug me from the wall. It was very odd to be awakened by said little green light talking to me.  They gave me a coupon for breakfast to let me wake up more but after a very long shower to get all the glue and gauze out of my long, curly hair (3 shampoos, lots of picking at it and then the usual heaps of conditioner and combing in the shower to decrease tangles) I just did not feel like anything but going home and sleeping and I knew I was safe enough to drive.  So I did just that, and I suspect that I did not sleep as well as I thought because I am wiped out today even after a 3 hour nap.  I have no idea if I wakened frequently, slept lightly, whatever because of my meds.  I can't imagine though that I'd feel this beaten up if I had slept well.

I will probably hear something in a few weeks.  If I have apnea then I'll do a 2nd test with trials of different masks and I will be hoping to have someone a little less...lazy.  I guess that's the best description.  Definitely with the blood, but also with the lights out timing and with bothering to change her usual lecture into something appropriate for someone with medical training.  I have a big pet peeve about that, especially because not only am I telling you that I am a healthcare professional all of my paperwork tends to be written in medicalese because it's how I think.  She had read a ton of paperwork so I know that she'd seen that as well.  I once went to PT and the therapist didn't read the personal information section but when he got to the breakdown on tendons messed up in my left leg he started to say "um, are you a ..." and right then a PT that I knew walked by and started talking to me and said something about don't try to fool her, she's an OT and then they started trying to recruit me.  I laughed so hard because he shifted gears 100% and gave up on the 'when your kneee is unstable and you twist it..." lecture and went more to "ACL laxity along with your history.  Exercises.  Here."  I never even went back because I could do it on my own.  My pet peeve thing has grown over the years though as I've grown more and more accustomed to having doctors who listen to me.  One thing that was kind of neat at my psych stay was that I was asked to talk to the psych interns about my condition and history.  The doctor in charge told me that I was knowledgable and articulate about my unusual situation.  Truthfully I was the only real choice; the other two patients one thought he had stomach issues (nice person, I just was confused why he was there) and the other was confused.  (Funny story, she got all worried about having left two little bars of soap in the shower.  To calm her I told her she could shower first but then I checked on her and she was in bed so I went.  While I was getting dressed she knocked on the door and proceeded to carry on a long conversation with me about the soap and did I get rid of it and how did I touch it and did I get rid of the soap?  I kept threatening to carry on soap conversations with everyone when they showered.  Not nice to make fun, and it was intended as that, it was just a very weird thing to do while naked).  But anyway, I did that and the interview was cut quite short by the person who had to interview me knowing nothing about akasthesia, leaving me to deliver a small lecture to the room to explain the different types of the syndrome that falls under.  The dr. in charge then asked if I had anything I wanted them to know and so I got to talk for a minute about being an atypical patient who suffered because of a lack of people wanting to creatively look for why depression treatments weren't helping me despite my being "too successful" for bipolar, much less the kind of bipolar I have.  That's twice lately I've gotten to be a learning experience (aside from the intern who admitted me and she NEEDS practice); I had a medical student sit in on a session with Dr. Brain and asked some questions and we talked a lot about my functional abilities versus expectations and how I can be so hard to assess that even Dr. Brain had missed a mania a month or two before until a few hours after the session when it hit me that I was manic and had been with her.  He then probably got completely lost as this was the session just before the akasthesia and we discussed and chose some extremely unusual treatment options.  He also got to see us talk in code:  Me:  And if this doesn't work what happens? Her:  We'll hope it works. Me:  You know I know this is not good and I know where I'm heading.  Her:  I'll tell you when to worry.  For now, try this.
(For completion sake a week later was Her: And if this doesn't work you can increase the dose tomorrow, but after that I'm afraid we're looking at hospitalization.  Me:  I know.  I'm getting ready (emotionally). 5 days later I was admitted and that was because of the delay for a smaller weighted blanket, which I am SO glad I did.)  If I had that blanket at the time I think I would have asked to just plan to start the admission process Monday so I could go Tuesday.  I guess we really did though, it just didn't work out because of communication stuff for me to go until Thursday.

As I get older with this disease I realize more and more how much I want to help prevent some of what happened to me from happening to others.  I sound ancient saying this, but when I was diagnosed there were only 3 approved meds:  lithium, tegretol and depakote.  Now there are probably 15 meds approved for bipolar.  It took a long time for people to understand that bipolar was treatable and that signicifantly large enough numbers of people were diagnosed to benefit.  (That is one thing that the addition of bipolar 2 did to medicine; when I was diagnosed it drove me crazy as it seemed EVERYONE was bipolar yet nobody was sick like me).  But during that period of overdiagnosis a lot of meds that existed for seizures and antipsychotics became approved for bipolar.  It still amazes me that lithium has only been available as a treatment since the 1970s.  Before that there wasn't a real treatment for bipolar.  So that makes me think that given another 50 years or so bipolar is going to become a bit more like depression, even my variety that is so hard to control.  I think that there probably need to be meds specific for bipolar instead of borrowing from other brain disorders.  The only one besides lithium (which is technically an antipsychotic) is just a combination of prozac and zyprexa (antipsychotic).  Anyway, I enjoy talking to those learning.  I also filled out my living will with a designation to donate my body and particularly my brain after death.  My mother asked why so adamently my brain and I wound up trying to explain that with the combination of a weird variety of the disorder and damage from not being treated and probably from some of the treatments as well my brain may have various changes that make it useful to research.

And that sure got off track......sleep test to dead????  I need sleep!  (And will get some; tomorrow is a huge day.  I'm going to babysit my niece again (I think I get to go to baby music class) and then I have a late appointment with Dr. Mind.  Getting tired of driving to the city late....So if nothing else tomorrow I will be tired enough to sleep and sleep well.  (Not that tired matters.)


Jean Grey said...

I wish that I shared your optimism about bipolar. I think that the new drugs are not always better, and I am starting to come to the conclusion that many people with bipolar are overmedicated- and that in the long term, it isn't always helpful. Certainly the recent research on the efficacy of antidepressants is nothing to brag about.

Just Me said...

Jean I was hoping you'd post here b/c I knew we're opposites on this. I have belief in this because it has taken new, just off the FDA list drugs to make me be here rather than on long term disability which was expected by my age 4 years ago because I had almost nothing left to try and the ones left were unlikely to work. And then Seroquel kind of worked but still needed so much additional medication and so I begged and pleaded to start XR when it was released, actually before it was released. My dr. did not want me to be her first patient on anything, but I pestered until she agreed and after a week my life changed. With Emsam I did wait until it was out for several years and she had some experience with it, but from the day it was released I knew I'd probably be on it someday. She just told me that she would have been very concerned about me on a regular MAOI because I am so incredibly sensitive to meds but Emsam has also drastically altered my life. For the last 2 years I was on less meds than since I was diagnosed, and at one point was on "minimal meds". Right now I am on quite a bit but it's still down from the hospital discharge and it's what I need. The old meds alone simply didn't do anything for me. Lithium controls my rapid cycling but only when combined with much stronger meds. I'll never be without an antipsychotic. I'll probably never be without an MAOI. But both of those drugs, the ones that made the difference between existing and living, are new. And that's been my trend since diagnosis. I never achieved a therapetuic level of depakote while in the clinical trial with the doctor who brought depakote into bipolar kept trying to get a real level. The decided before taking it away to try the brand new ER version and suddenly I had a level. Depakote was not good for my body. I'm glad to not need it. But it also was very valuable for years.

(see part II)

Just Me said...

I would be unfair though to not say that medication lets me be able to succeed in therapy and that therapy is how I'm really doing well. Meds alone would not work for me. But therapy alone wouldn't either. I know my doctors are currently working on "how to reduce Jen's anxiety" part II, and that like part I it probably will include some alteration of anxiety meds to keep me extra calm while learning new ways to manage and then backing off them. Right now I'm not asking, I just know that this is a necessary step.

People look at my med list and think I'm overmedicated. In fact when I was admitted the intern immediately took a chunk of my seroquel away without telling me, resulting in frantic 9 pm calls from the nurses to the oncall dr. because you don't mess with a dose that I've been on for years and tell me to sleep. She could not understand why my doctor had me on the meds I was on, which were drastic and on paper look like overmedication. But she was responding to years of knowing me and was trying one last extremely unusual, drastic attempt (combo high dose seroquel and higher dose zyprexa with high dose klonopin given all at once along with some dose of vistaril just in case maybe it would help). Most doctors wouldn't have tried what she did. For a long time I thought she made me worse and was angry, but now I see the rationale was good and she was betting on one of 2 equal options and going with the most likely and treating it aggressively because she knows I need that. 10 or 15 years ago those options wouldn't have existed.

I've never figured out overmedicated. I can see it in others. I would have said automatically I was overmedicated on neurontin even though I was on a pretty small dose most of the time d/t my strong reaction initially. But it was a med I had to have to stop what my brain had going on. other times I've seemed overmedicated, mainly back when I was on tons of depakote and tons of antipsychotic and anxiety meds, overmedicated sucked but it worked and any less than I took left me miserable with symptoms.

I don't think there's a good solution yet, I just think that more options are ideal and that more options in odd combinations have saved my life. I have plenty of side effects now and normally and mostly I don't care. My BP is being crazy right now and that's not acceptable but other things have to be. I guess I see it as a trade-off; freedom and side effects or intolerably mood swings.