Saturday, October 29, 2011

Took the Bait and Now I'm Hooked

Well, it was turning out to be a long four-and-a-half months to wait for this special specialist, so I decided to watch a little Netflix. Now... what to watch? Oh, I know! Dear friend spoke about, what was it? Under Our Skin... ooh, look! It's on instant streaming!

After watching, I knew I needed to be tested again. In fact, I was so convinced, that I forced my husband to sit in bed, hovered around an iPod, to watch the film. There was something so... familiar about the film. It was like looking into a mirror... A funhouse mirror, where things like gender and severity get distorted, but a mirror nonetheless. I connected with these people! There was something so very common between us; something common that had invaded and stained the various cloths we were cut from.

We finally got to the appointment: the big EMG! And everything went wrong. What was supposed to be an evaluation and EMG was "mistakenly" scheduled as only an evaluation. The doc didn't have any time whatsoever to perform such a test, and "today is just an evaluation." Well, it's a good thing–a really good thing–that she was nice.

Actually, she was amazing! After telling her her all of my symptoms, past and present, she looked at me with unflinching certainty and said, "I can look at all of these symptoms and paint them into the same picture. These are all telling of one thing..." (No, don't try to read ahead. She doesn't say Lyme.) "This all paints a picture of Autonomic Disorder, and when we do your EMG, I also want to do some autonomic testing. Can you be here all day?" Well, yes, I could, and let's get that scheduled.

So certain she was in her hypothesis, she had no problems upgrading my temporary disabled tag into a permanent one. Yes.

Well, the days dragged on, and the symptoms continued. My dizzy spells were getting worse and worse. About 98% of the time I would nearly black out when I would stand up. Everything was getting more and more difficult. I didn't like all of this waiting, but what could I do?

Finally the big day arrived. The testing was done, including a sweat test. I got to lay in a 125˚ room for 30 minutes to see how I would sweat. Guess what? I didn't. That was a problem. About 6 weeks later, when I got the rest of the results, I found that I also did not do so well on the other autonomic testing. I knew I should've studied harder! >wink<

I received my diagnosis. I had Autonomic Dysfunction with P.O.T.S. (Postural Orthostatic Tachycardia Syndrome, to be exact.) So now, I was looking at a life with:

  • Interstitial Cystitis
  • Fibromyalgia
  • Autonomic Dysfunction
  • POTS–a heart condition!
What in the world? But then I remembered something that someone very wise had told me after he had prayed for me. "When you get your diagnosis, don't take it as the final word." I always thought that meant that I was going to be supernaturally healed. I had known healing in my life before... Of course that was what this prophetic word meant.

Well, to make sense of this, I remembered my request that was still not verbalized. I asked my new neuro what she thought about the possibility of Lyme was for my case. "Your symptoms don't really line up with Lyme. Some of my patients kind of do, but I wouldn't put you anywhere near the front of that list." I argued that the main test was about 50% inaccurate, and that I really wanted to be sure, so she ordered both the Elisa AND the Western Blot test for me, just to appease me, really. I got my blood re-drawn that day.

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