Autoimmune Dysmotility and Me: Part Three

I stood on the scale looking at the large digital numbers as the nurse took my blood pressure. I have lost 33+ pounds since May. This wasn’t entirely news to me as I’ve been using an analog scale at home and notice my clothes falling off me and all of those other observations.

But now it was official. On my permanent record so to speak. Buy new clothes official.

It made me cry.

I don’t have any attachment to a number and I’m comfortable with the weight I’ve been for over a decade. But losing so much weight in such a short period of time without actually trying is shocking. The impact of not eating much all that time has certainly been a factor, but it has also eroded my concentration and focus. And my comfort in my own body.

Since early May, I have had 78 medical contacts – appointments, tests, procedures, blood draws, etc. The vast majority have been centered around my unexplained GI symptoms, things I’ve written about in earlier posts. No GERD so then they thought a stomach motility issue (passing food through) but nope. So they moved up the GI system to an esophageal motility issue. This culminated in a truly horrific test called manometry that is quite similar to the methods used to force feed suffragettes hunger striking in jail.

Today, I had a consultation with a GI surgeon whom I expected to schedule a surgery for me. Unfortunately or fortunately I guess, it turns out I don’t have an esophageal motility issue. So we have to go back and repeat tests, adding chips to track my GI activity – first a pill that I swallow and monitor for a few days, then a clip attached to my esophagus that also monitors different actions. Both pass naturally, but require me to carry around a monitor for several days, even into the shower.

It made me cry.

The Physicians Assistant, the doctor, and the dietician all had different outcomes in mind. I was too busy weeping in frustration and anger. The only good thing that came from all my weeping is that it delayed our departure enough for Highmark to approve the procedures.

I told the dietitian that the last one I spoke with wanted me to read and follow a 24 page diet, after congratulating me on my weight loss. I opted not to work with that first one and to her credit, the second one today actually let her jaw fall open.

She started with asking me to eat 3 ounces of plain baked chicken to see how my GI system reacted, then tomorrow to have a cup of plain white rice for lunch. Then she told me that before I begin these next two tests in November – she wants me to eat small portions of pasta Alfredo! To get fat into my system. No reading necessary. Also, she didn’t ask me about how much weight I wanted to regain because she understood that I want to eat. That’s my goal.

So my dance card for November is filling up, too – three procedures, my COVID-19 booster, the follow up with the surgeon, some sort of scan I didn’t quite understand, and possible consult with my ENT who is on staff at this Institute, bloodwork for my psych meds, appointments with my psychiatrist, and of course, therapy.

It is so frustrating after all of this to only be able to rule things out. Actually, that’s not true. Things that were ruled out (like GERD) are back on the table for a second look. GERD would not cause me to lose 30+ pounds. But it might point to some sort of magical ph mixture in my system that is eating me alive. Or whatever.

So it doesn’t look like a diagnosis or treatment will be coming along these holidays. I tried on my winter coats and they are absolutely hanging off me. Do I buy new? I don’t know. I’m still trying to wrap my head around the slingshot of today’s appointment. I was so sure we were ready to officiate the diagnosis and schedule the surgery. Now I’ll spend the holidays walking around with microchips in my body and having to carry scanner gadgets in my bag. And trying to be grateful.

I just don’t feel very grateful

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