Wednesday, April 01, 2009

Heroes & heroines

Heroes and heroines
Are scarcer than they've ever been
So much more to lose than win
The distance, never greater.

--"Heroes & Heroines", Mary Chapin Carpenter

It's hard for me to believe that we've reached the end of the first quarter of this year. Seriously, it seems like 2009 just started. I'm nowhere near keeping up with the blogging pace I started with last year - I'm down about 30% from this time last year. Most of that has just been the natural ebb and flow of things. I haven't been as "into blogging" this year as I have been in the past. That's not a threat to quit blogging or anything. Believe me, if I ever do quit, it will be with a whimper and not a bang. I despise those people that come on to their blogs and declare their intentions to quit as a blatant attention grab. I am, however, thinking of doing a massive overhaul of the blog. Template, title, layout, everything. But we'll see. I also have a lot of other things on my plate.

A lot of this year has been devoted in some form or another to diagnosing Heidi's mystery ailment that has defied (until recently) a diagnosis. It has been a long and hard road for her, for both of us really, but most of all for her. As I pointed out to her the other day, I'm not the one that's hurting pretty much constantly. But I don't exist in a vacuum and I would be lying if I said it hasn't affected me a lot. Part of that has been my marked tendency to pick up things I don't need to pick up, but when you love someone that's hurting for reasons no one can seem to figure out, it's hard not to want to do whatever it takes to help them. It's why Lynette Iles is worth her weight in gold. After all the doctors and tests and more doctors and meds and more tests and an MRI and chiropractors and neurologists and psychics and you-name-it-we've-entertained-the-option, she finally figured out what is causing most, if not all of the chronic pain that Heidi has been dealing with. It's called hypermobility syndrome, and even though it, like fibromyalgia and chronic fatigue syndrome, has no real definitive treatment beyond exercise and analgesics, it's at least a relief to be able to refer to it by name. There is also a possible carpal tunnel component, but frankly, we're beginning to doubt that more and more with each passing day.

This whole experience has really caused a crisis of faith in me - and that sounds dramatic and it is probably overly so. My faith in the ability of traditional Western medicine to find the cause of an illness, accurately diagnose it and treat it successfully has been severely rocked by this. As someone whose job is to be a cog in the wheel of Western medicine, this has proven especially problematic. Before this, I figured that there was no problem that a competent physician could not diagnose and treat. After all, our medical educations are the best in the world, right? I have, in the past, been notoriously skeptical of alternative medicine. Even most herbal remedies get a raised eyebrow and skeptical look from me. If there is no tangible proof that we can measure objectively that a treatment works, then it is not worth trying - or at least that was the school of thought I espoused.

I think the tipping point for me was when Heidi went into the chiropractor and, after her initial appointment, had me come along to play the role of the skeptic. After inadvertently comparing this man's profession to voodoo by saying "I just want something to help her, I don't care if it's voodoo," I took a step back and set my general skepticism of chiropractors gently off to the side. When I thought rationally about it, the things he said made anatomical and physiological sense. What I've come to realize is that the chiropractor is basically nothing more than an osteopath, only without all the internal medicine training. And while her results from the chiropractor have been plus/minus, I think overall it has been positive.

The problem is that our health care delivery system really is broken. Badly broken. I said to Lynette after Heidi's first appointment back in December in which she was diagnosed with fibromyalgia after 5 minutes, "Whatever happened to a differential diagnosis?" According to her, in most places it is dead, or only exists on House. I've been trained to put my faith in the diagnostic abilities of physicians and while there are many many good doctors out there, they are operating in a fundamentally flawed system that discourages spending time actually listening to patients and encourages herding them through like so much cattle.

So while these heroes and heroines of health care actually are scarcer than they've ever been (or so it seems), the real hero in all this is Heidi. Rather than just succumb to to it and give up and not fight, every setback has been a reason for her to redouble her efforts. I'm not sure that I would do the same were I in her shoes. She refuses to give in to to the pain and despite the numerous obstacles that have been thrown in her face, she continues to push them aside and persevere. That is not to say that she hasn't had frustration and anger - one look at her blog will tell you that. But the fact that she continues to fight it is an inspiration to me.

We don't know what the future will bring as far as this goes. We certainly didn't think we'd still be trying to figure things out 3 months later. But it's what we do. One day at a time. I frequently say it's the "in sickness and in health" part of the vows, plus for me, I also view it as karma or whatever for all those years she weathered my storms.

But the one thing I do know is that we will continue to face them together.


Anonymous said...

love you.

mary35 said...

It is terrible to see someone in pain, and even worse when you go to the doctor, and they don't even take time to listen, let alone ask questions. The sad thing is that most of us spend much longer WAITING for the doctor, than we actually spend WITH the doctor, and that's sad. I don't know that I'll ever find a good doctor. I have no serious health problems [that I know], but when I have brought up concerns, they've been brushed aside, and the doctor doesn't even remember my history and doesn't bother look at my chart beforehand, evidently. You're right. Something is broken. One viewing of Sicko by Michael Moore really drives that point home.