Wednesday, September 28, 2011

Embracing the Idiopathic

This weekend I found myself in Urgi-Care for a UTI from hell. My fault, I wasn't drinking enough to keep up with my Diamox intake for a little while, so it was bound to catch up with me. Anyway, the thing with Urgi-Care is you have to tell the doctor on call your entire medical history to even get started - they have no idea who the heck you are.

My number one goal in these situations is to make my digestive issues abundantly clear before some rip-roaring antibiotic is prescribed. I guess that's why I almost forgot everyone's favorite pain-bringer in the run-down. The doctor asked, "And why are you on Diamox again?"

"Oh yeah... forgot about that. I have Intracranial Hypertension."

"Oh wow. You can't catch a break." I smile. Empathy, even through humor, is a welcome sign in any medical office.

We continue to discuss my symptoms, allergies and so on, when the doctor stops to ask one more question, "How did you get the Intracranial Hypertension, anyway?"

"It's idiopathic."

"Yikes! Honey, I'm so sorry. Let me go get you your prescriptions."

That was Sunday. I didn't realize how incredibly important that conversation was until yesterday, Tuesday.

You see, I've been pretty sick since Saturday night, but I was kind of expecting Tuesday to be my first day "back to normal." When I woke up still feeling pretty crummy, I was saddened. Then, on top of everything else, my headache returned...

And I was so close to doing what I always do when I get a headache - I was going to begin my quest for the culprit!
  • did I eat something to cause it?
  • did I not eat?
  • did I need to drink more?
  • was I stressed about something?
  • did I not get enough sleep?
  • did I strain my eyes?
  • was I wearing a headband, hat, etc.?
  • was I coming down with a cold, congestion or getting allergies?
This is just a small sampling of the kind of interrogation I put myself through every.single.time I get a headache. However, yesterday, one thought came charging through the rest:
I have a headache because I have IDIOPATHIC Intracranial Hypertension.
Does this seem too obvious to you? I would completely understand if it did, but let me tell you where I believe at least part of my confusion comes from: when I was diagnosed with IIH I changed my life dramatically. I stopped eating gluten and dairy (after speaking to a nutritionist) and I stopped working. The change in diet and the change in daily stress absolutely  affected me favorably, so I know that they both exacerbated the symptoms of IIH - the problem is, I think, part of me, has been pushing it even further and hoping I would find the cause in one of these factors.

When I told that doctor on Sunday that my disease was "idiopathic" and she knew there were no words to say after that, I think that was the first time I fully embraced the stone wall that "idiopathic" is. Originally, when doctors first told me I had idiopathic intracranial hypertension and that "idiopathic" meant "of unknown origin", I have always stuck tiny little word at the end of that definition: YET, as in they just haven't figured out what caused my disease YET, but they're working on it! It was a thought and an attitude of hope, but what it has done to me personally is simply drive me crazy! It is not my job to solve the idiopathic mystery - it is my job to balance my life in between my symptoms so that I am being productive and enjoying, every pain-free, symptom-free moment I have!

So this is my new stance. I am going to embrace the idiopathic nature of my disease. I promise you, this will not be easy for me. I am a problem solver and this problem that takes over my brain and my consciousness more than I would like to admit is extremely difficult to ignore, but yesterday's pain was different and I have to remember that. When I released myself from the duty of finding the origin of my pain I was left only with one kind of pain. I freed myself from frustration and disappointment - yesterday's pain was only physical and I know I am strong enough to deal with that.

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