disapproving kitty

Monday, June 29, 2020

What's Black and White and Inflamed All Over?†

I've never chronicled a flare up before, and it occurs to me that having a record is a reasonable idea, if for no other reason than the next time this happens I can go back and see when this time happened. I'm really bad at writing things down as they occur.* The other reason this seems worth doing is that I kept looking around online to find other reports of EDS flare ups and didn't uncover a whole lot. So I might as well add to what meager collection of info it out there for others to find.

This flare up started around June 10 with severe stomach pain. Like, I've-been-stabbed-in-the-stomach severity stomach pain. I usually take a low dose of omeprazole when this happens, but at the time I was visiting my parents and didn't have any. I took everything else they had. Rolaids, Tums, even some Zantac my father still had because he missed all the recall notices that flooded the internet a few months ago. Pepto Bismol. Nothing helped. Gasping pain so bad it woke me in the middle of the night and I thought about whether I'd need to go to the hospital this time. Eventually I got to the store and bought omeprazole, ripping the package open and swallowing a pill dry in the parking lot. It helped. I don't know why only this particular med helps, but I've stopped trying to reason with that kind of pain.
For the curious -- yes, I've had it checked out. I've been scoped and CT'd and examined from here to Sunday. There is nothing wrong. Nobody can see anything. They never can. I did, once, have an ulcer that was healed, but beyond that, there is no explanation for my symptoms.** Except, of course, that I have EDS and it does strange things to you.
A day or so later, my hands started to hurt.
Ten years ago, after my daughter was born, I developed "babywrist." The contortions I went through to keep using my hands led to golf and tennis elbow, and eventually a strained left shoulder. None of these ever healed fully, though I did regain use of my hands and they don't bother me often. My elbows and shoulder hurt nearly always. One of the hallmarks of Ehlers-Danlos Syndrome (hypermobility type) is that, once damaged, connective tissue just doesn't heal. So it's important to not get damaged in the first place, which is challenging when you want to have a life.
But now my hands were hurting again. Just a little. I thought it might be attributable to an overabundance of work with the pruning shears when I took out a bush in the back yard. That wasn't it, of course, but by the 20th or so, I was pulling out my old babywrist braces because they helped me remember to not try to do stupid things with my hands like turning doorknobs or unbuttoning my jeans.
By this time, everything hurt. Fingers, hips, knees, neck...everything. The plantar fasciitis in my left foot (it was my 5 year anniversary! Remember that thing about not healing?) was exquisite. The brace I wear for it at night caused numbness followed by wicked pins and needles, which was new. My skin hurt. The skin on my left arm where I wore the arm brace felt like I'd rubbed it with sandpaper and coated it with that feeling you get when you whack your funnybone. Every time I stood up I had to either sit back down, or pause where I stood till the dizziness passed and blackness cleared from my vision***.I started taking high doses of Celebrex to help with the inflammation, and full doses of omeprazole to help with the side effects of the Celebrex.
Even so, I spent every morning waiting for painful cramps to send me running to the bathroom where it felt like everything I'd ever eaten was leaving my body, along with half my insides. Fortunately, the exodus was usually done by noon, and after a rest, it didn't bother me much for the rest of the day. I was, however, hyper-sensitive to all the foods I can usually eat a little bit of without too much trouble. Not now. Even small amounts of dairy, or food-gums caused painful bloating.
By the 27th, I was a wreck. Sleeping hurt. Not sleeping hurt. Moving hurt. Baths helped, but there's only so much time you can spend in a bath tub.
Then, on the 28th, it started to let up.
Today is the 29th and I was able to turn the ignition on my car without using both hands. I'm still wearing braces on my arms, but the pain is receding. I have no idea why. It's still there, but it feels like maybe I'll see the back of this in a week or so.
I don't know what brought it on, or what is causing it to taper off.
I wish I knew.
I'm not looking forward to the next one.

*especially when it comes to putting things in the freezer. Like, every time I think "oh, I'll remember putting this in here. This was some memorable stuff." No, it wasn't. It's never memorable stuff. Three months later I'm looking at some frost- encrusted chunk of something, going "what the hell is this?"
Every. Time.

**If you're considering telling me it's all in my head, or I should change my diet, try yoga, exercise, breathing, gratitude, supplements, etc please feel free to keep your thoughts to yourself. I've heard and tried everything you might care to suggest.

*** My kids are so used to seeing this now they just wait for it, sans comment. They know what it means when I'm "out of spoons." In a way, I hate that this is "normal life" for them to see, but maybe it will end up with them being more aware of and compassionate towards people with disabilities, so it's not all bad.

†People with EDS are often called "zebras" since our issues are not the "horses" doctors are taught to suspect before moving on to more exotic diagnoses. The trouble with this, of course, is that many people with EDS aren't diagnosed till after having symptoms for years or decades, if at all. So the title is just a super funny joke for all those with EDS. You're welcome.

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