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

Saturday, October 13, 2007

To Jon and anyone else

This is a comment response plus further discussion if anyone wants.   I just can't get into my comments until I am home.

Thank you for the very, very kind words.  I need to hear those about daily right now; this particular disability period is so hard.  Although I'm learning;this "vacation" is very hard, even with me trying hard to rest at every opportunity.

I just wanted to throw one thing out before I forget; more discussion of the SSDI thing when I'm home.  Lots in fact as it's time for me to start learning and seeing a lawyer just so I know some of what to expect.  My hope is to do it with a lawyer the first time and to have so much documented I'm in the lucky 1st time applicant group.  My doctor is documenting that way as well, being extremely specific with every note and every loss.

Anyway, re: cognitive changes.  My understanding is that being on meds helps, being stable helps more, and it is no longer a certainty that bipolar people will develop dementia.  In the past the disease combined with the "treatments" caused horrible dementias, so bad that I can think of one lady alone who broke my heart for years.  However, when I was diagnosed I was told that damage done couldn't t be undone.  In my case I had been on bout 11 antidepressants in rapid succession over a few years, and each one I had started at a low dose, escalated to the max dose, doing well for a bit on each dose, then maxing out and coming off.  Each one of those caused more damage and I was told that this is undoubtedly related to how severe my rapid cycling is.  Truth be told I am sure I would have been a rapid cycler anyway, but all those antidepressants turned me into a human Superball.  That's the whole kindling thing.  I also have read that there is evidence kindling can occur every single time we miss a dose of pills or have to change or the like.  And then there's the whole other bag of worms for me, lithium toxicity.  When that was really bad my cognition was so poor that I would cry because I could not complete sentences because I couldn't find words.  Nothing has made me more patient with stroke patients than those couple of weeks.  When that occurred combined with my dragging my foot and tripping over my feet while walking as if drunk my psychologist became suspicious I was toxic, and well, I was.  I had to work my way back through things as simple as what day it was last year.  I eventually got the basics back and returned to work to learn that while I was better I had some changes forever.  I have always relied on my memory much more than I can now.  Now I have a notepad that is off-limits under penalty of death to all others.  One thing that was so bizarre was that my memory for ICD-9 codes was essentially gone.  I never did learn nearly as many as I previously had and now we're computerized and I don't need to know, but it was terrible because I lost so much time looking up simple stuff.  I also have a lot more trouble with numbers; my billing accuracy is much less than it was before (well it was until the computer).  I was really upset for a long time because of knowing I wasn't fully regaining what I had, and have just come to accept it over the last few months.

This round my cognition again really went downhill.  Not from toxicity but from not being able to slow my thinking.  It was bad enough several times my psychologist tried different tests; I passed some and did ok with the rest.  But I'm still working on remembering the day, how several days coming pan out, what I need to do/what I'm doing (the number of burned meals says that all well), to place clothes IN the machine before running it, etc.  I overdrew my checking last time because I paid my car payment weeks early.  That kind of thing.

My suspicion?  I won't be getting everything back this time either.  This time I don't really mourn that because I know now.  I feel I'm doing what I can do.  I take vitamins that may help.  My doctor has kept a few meds out of the line that she feels would be worse.  I trust her.  I take lithium despite it and my body hating one another because lithium helps me cognitively and I'm just willing to accept the consequences. 

So in total, I think if you have an ideal case of bipolar, the kind where you get sick, get diagnosed, get treated, and never have a bad episode again then maybe you won't have cognitive probems with age.  However, given the nature of bipolar, I'm just not sure that's very common.  I'm certainly not in the same cognitive place most people my age are, and my abilities on a standardized test would be very, very different than 10-12 years ago.  One of the things people try to say positively about bipolar is "but such intelligent, creative people have it!".  Well, I may have (and did) fit that back before I was sick, but I know my intellectual ability is so far declined it is pathetic.

It's concepts like this that lead me to 3 weeks of deep depression when I realized that I don't get my life from before back.  I really think people get a little excessive with this positives sometimes.........

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Jon said...

"I really think people get a little excessive with this positives sometimes........."

I'm working on a "stages of bipolar disorder" project, and I'm starting to feel it's one of the stages. The "it's a gift" stage.

Great post, you have a gift of being able to clearly describe what you're experiencing. Your use of kindling is a perfect example and analogy.

Emilija said...

I am a beleiver in kindling, but I am also a beleiver in the opposite- that the longer you can go well medicated and stable, the easier it is to stay stable and the more your brain heals. The hippocampus is the one part of the brain that can actually regenerate. Serotonergic antidepressants cause dendritic branching. The brain is plastic. I truly beleive that. And I take 12 different supplements, from phosphotidylserine to ginko to vitamin e, all to protect my brain and prevent diabetes. E-mail me if you want my list. I worry about my brain too. I had one overdose that left me in a coma for 3 days. And I had a series of 22 bilateral ECT treatments that wiped out 2 years of memory, permanently. But I think my mind is working better than it did just a few years ago. I think the supplements I take really help. And getting off certain meds has also helped. I try to read as much as possible as well.

Taylor_John said...

Haven't come across the term 'kindling' before. could you explain the term?

Just Me said...

Jon: I can't say I've ever had an "it's a gift" stage. I hear it and HATE it, but haven't thought that. I accept it's who I am and that there have been good things that have come from it, but I'm too aware of what's missing.

Emilija: I will email you for your list. I'll talk to my doctor. It's somewhat risky to add things to my mixture, and adding things for me to swallow also is risky because if it's big and tastes bad it runs a risk of making me sick and then life is ridiculous. But I've slowly added in several supplements in the last year and have done well with them, so it's probably time to add more. Especially now that I'm on the Seroquel, which is not making me any smarter.

You're a good example of the brain surviving the assault of so, so much. I'm amazed you did OT school on meds. I barely made it sometimes on just antidepressants and hypomania.

Taylor: See the ridiculously long explanation entry.