Wednesday, June 13, 2007

The Meds Go 'Round

In an earlier post, I started to talk about the cost of stability. Unfortunately, I got distracted, which is a pretty common occurrence for people on lithium. Some days, I'm flakier than a heavy snowstorm.

Getting stable was a long and arduous ordeal. The thing about BP meds is that the same medications do not work for everyone, and often work differently on different people. There's no way to predict how a patient will respond to a particular medication. The only way to find out is to try it. In a world full of miraculous medical advances, treating BP is really just a matter of throwing darts. If that's not enough to make you lose your faith in modern medicine, then I'm not sure what is.

I read somewhere that researchers have only accounted for 20% of the brain's secrets. That means that they have no idea what's going on--or why--in the other 80%. That is not an encouraging statistic for those of us who are having a bit of brain trouble. Advances such as the functional MRI allow us to see brain activity in real time, but it's like watching a foreign movie without subtitles--you can get a general idea of what's happening on screen, but there are bound to be gaps. Big gaps. The brain is akin to an Almodovar film, which means without subtitles you're pretty much at the mercy of speculation.

Much of what is known about the bipolar brain has come about via autopsy data, often post-suicide. Much of that information is fascinating, if not disconcerting. Dr. Kay Redfield Jamison, a Bipolar's Bipolar, explains the research findings in her books, An Unquiet Mind and Night Falls Fast. I took comfort in Jamison's reassurances that my condition is a physical problem, chemical in nature. It just happens to manifest though my thinking and behavior, and that makes it hard for "normal" people to grasp let alone sympathize with my suffering. That includes a bit of neglect from the medical world in general.

Lithium has been the most interesting drug among those in my arsenal. While it has done a stellar job of regulating my mood swings, it has also bestowed upon me a lifetime of dizziness, diarrhea, loss of mental acuity, and dry mouth. I will probably fry my kidneys at a young age, and thyroid failure is almost guaranteed. The most dramatic and noticeable change, though, is that lithium initiated a 50-pound weight gain that came on with alarming speed and didn't slow down and stabilize for almost three years. I look like crap, but...I'm a lot more tolerable to be around.

EMSAM lifted me out of a seemingly incurable depression. It has done what no other medication was able to do, and as a bonus, after worrying my way through a flurry of questions, I found out firsthand that the people at Bristol Myers Squibb are quite lovely (not in keeping with my deepest-held beliefs about big pharma and the people who keep it running).

Lamictal is the epilepsy drug that seems to broker unity among my other medications. There are conflicting reports about whether this is really an effective drug for treating BP, but for many of us who take it, there is no doubt. Lamictal makes everything else work together.

I have insurance. I am extremely fortunate. I have spoken with many bipolar patients who do not have access to the medications they need because the cost of BP treatment is astronomical. It's appalling. For several months out of each year, I am, for all intents and purposes, uninsured while I whittle away at my very large deductible. It is painful. My pharmaceutical bill alone hovers around $600 a month. At least the lithium comes in a generic at the bargain price of about $6. That leaves $594 for four other medications. Per month. And people wonder how the mentally ill end up homeless and hoping for hospitalization.

For a long time, I resented the hell out of the money I spent on my Bipolar Disorder. There isn't a day that goes by that I don't wonder if maybe--just maybe--I could get by au naturel, no meds at all. Actually I tried that, and the results were nearly tragic.

Elizabeth Kubler Ross nailed it when she articulated the stages of loss and grief. Recent studies show that Ross's model, although correct in its content, is not linear. Ask anyone with a chronic illness, and they'll tell you what I already know: It's more of a two-steps-forward-one-step-back process of getting to acceptance. Today I am accepting, yesterday I was bargaining, next week I could be in a bit of denial, I continue to revisit anger, and although I think I'm done with depression, it's just a fact that this one can smack me around at any time. This cycle doesn't stop just because you've visited each station. It's not a progressive dinner; it's a complex negotiation with a most unpleasant reality.

Was mich nicht umbringt macht mich starker.

If someone had told me three years ago that getting treatment was only the first step, the easy part, I would have shrugged off the thought with unbridled hubris. I think there is a reason we can't see our future. We can only hope and speculate, and believe we have a reasonable idea of how things will unfold, but not being able to see affords a protection we seldom appreciate. Had I known what was ahead of me, I would have quit before I got started. I never would have thought I had the courage to face the pain, the frustration, the devastation and the astounding loss that were yet to come. Had I seen the whole picture in an advance screening, I would have opted for jumping off of the bridge instead of crossing it.

If you haven't been there, you can't possibly imagine. There are still a few more bridges to cross, and it's probably to my benefit that I have no idea what the tolls will be. I don't need to know. Not yet.


CharleyS said...

I enjoyed reading your post. I take the same meds you do and have similar feelings.

I live in a constant state of denial that it doesn't really exist---despite the fact it has played a pivotal role in helping me f**** up my life.

I've had some similar thoughts regarding psychiatry. Meds are definitely a crap shoot. Sometimes I think there are better odds at the casino.

I guess I pretend to think I have things more or less under control now that I know what I'm dealing with.

I have people in my life that help me keep tabs on things.

I stay on my meds even though I hate them.

Life since finally being accurately diagnosed has been ok. Sometimes it is pretty boring. I still suffer from episodes of pretty heavy depression but the EMSAM has really helped with that.

As far as the future goes I'm cautious. I have to take life in much smaller chunks... day by day, and sometimes moment by moment.

May Voirrey said...

Charley, I'm glad you were able to relate to my experience. I think one of the difficult things about BP is the frequent feeling that we are alone with the illness.

Stay on your meds. I sometimes go back and read things I wrote when my meds weren't working, or things I wrote just before getting diagnosed. Reading those things is enough to remind me why I take meds and why I stay on them.

One day at a time is a good way to approach life because you just have no way to know when your neurotransmitters will dance without permission. Steady on.