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

Thursday, December 27, 2007

Response to Comment

This started as a response to Jon's comment on the post below, but it quickly turned into a post.

For the most part I didn't see anger. But every time I've ever seen this discussion, and of course it comes up a lot on various pages, it seems like quite a few of us are angry because modern medicine hasn't gotten this to a point of easy cures.

I've been there. But last January I failed Trileptal, leaving me with only 3 untried meds, all of which were not great choices in theory. I also had 2 meds that I'd had bad experiences with to re-try. My choice was to try those 2 meds. First was lithium at a tiny dose. As long as it is at 300 mg and I monitor for signs of dehydration I'm ok and benefit from that tiny amount. Then was Lamictal which gave me the rash so it's off the table even though it worked well.

I was very angry during that time and the next few months where we edged the Depakote dose to the maximum I could tolerate. But I was angry at the unfairness of allergies and poor responses, and maybe that's what seems different; I went through the "I have to take HOW many meds?" anger years ago.

Ultimately Seroquel is giving me the best days I've had in 10 years. The anger is going away pretty quickly now that I finally see I can feel good and it is lasting. I know I'll get sick again. But this time something finally happened. I'd spent years waiting for the major episode that I actually fully recovered from. I always had major episodes and bounced almost back. Last year it was so much less than before I'd been sick I was terrified. But now I am suddenly better than I've been in years. I bounced back to my baseline plus with this new combination of meds. I have a lot more confidence that this will work now that it's happened.

I imagine that I have a defensiveness that comes from being a medical professional. Every so often in my career someone (nearly 100% of the time a family member who is not involved at all) will come wave a Medicare statement in my face and yell at me about how expensive therapy is. Well, in a way that is true. Therapy isn't cheap. But like all medical procedures you are paying for my expertise, education, and experience; you're paying for supplies; you're paying for treatment time; you're paying your part of my malpractice insurance, etc. When this kind of thing happens I'm invariably blamed for not causing faster healing. Even though I know that I am very ethical about this sort of thing I still get frustrated whenever it happens. Therefore I probably am more aware of hearing (not on Jon's post necessarily) the statements that western medicine is dominated by money and is ineffective at helping. I just identify myself as part of western medicine I guess.

On the other hand I think it takes a lot of courage to try something alternative. As I said yesterday any supplement added to my med list is a risk, and the few vitamins I do take were scary to slip into the mix, especially because they smell and taste so bad. I was sure I'd throw them up for a long time and throwing up vitamins means throwing up something like $50 worth of other pills each night. (This Seroquel/Depakote high dose thing is very, very expensive; thank God for insurance). Fortunately it only has happened maybe once.

When I had been diagnosed just over 6 months I had a 4 month period where I was adjusting to a new psychiatrist, a new job, a new house, and I was vomiting constantly from Lamictal. I was not good about taking meds, my doctor was being kind of strict about that (as she should) and there wasn't good communication. Finally I decided to show her, took those meds every single day and tracked the vomiting. At that point we started to work together. Maybe that collaboration is beyond what typical medicine provides. I know I seek out providers who will do this and I refuse to accept less.

At this point I don't know what my point was when I started, other than maybe I hope that other people are able to find the good things that western medicine can do for us. It's not perfect but I doubt anything is going to be. Some people are almost certainly being treated for the wrong disorder and that's not helping them. If treatment isn't working do whatever you can do to get to a major university with a mood disorders clinic. Enroll in a trial; your treatment will then be free, often for a substantial program. Level III trials are with drugs known to be safe, usually you're helping see if a cocktail works or if this particular drug is useful for bipolar as a secondary label. Do not accept mediocrity in psychiatrists; it is worth big sacrifices to find a fabulous one. Make your doctor treat you like you're the one who lives with the side effects and you're the one who knows how you feel. Never accept less.

On the other hand one could call what I've done stupid. I don't know the total drugs I've been on for bipolar and side effects of my meds but it is between 40 and 45 since Sept. 2002. I need to update my med list blog to reflect the last 4 months. Either I've been ridiculously stubborn and it finally paid off, or I just don't get the point that I'm not going to be well. Whichever it is, I am proof at this point that sticking with it for 5 1/2 years and up to 45 meds at a million different doses can pay off. Believe me, I know this may end tomorrow. But I don't need to think about that like I always have, because for a brief moment at least I am getting to live.


Emilija said...

One major reason why the Medicare bill for therapy is so expensive is that you are subsidizing all of the Medicaid patients!

Just Me said...

True. I thought about adding that my employer and the facilities lose money whenever I treat a Medicaid patient. But that just opens a new set of issues.

Seems like the people who get mad usually are the same ones who want to tell me that I make too much money, etc.

Or there was one man once who coupled this with insisting on re-doing his mother's custom wheelchair so that 99% of the customization was removed. Reason given: (more or less) I'm stupid. Gotta love that.!:)

At least this rarely happens.