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quelle surprise

December 27, 2011

I’ve been writing every day, and surprised at how easy it is to do that. But I’ve had to put on hold my new practice of going for a walk every day before breakfast. Monday I was too weak to get out of bed, and there was nothing in the house that I could eat anyway. Spouse went to the grocery store, bought food and brought it home, then fed it to me. Hours later, I thought I was strong enough to visit the grocery myself, to pick out things to try. But the store was crowded, I felt overwhelmed by everything. Spouse had to lead me by the hand while I looked down at the floor. We barely spoke, because I couldn’t spare the energy. When we got home, I had to go straight to bed. Spouse brought me more food, which I ate. Later in the evening, I recovered enough strength and brainpower to finish reading my last library book, and watch a movie.

Today my big accomplishment has been putting on clothes, and walking half a block each way to the recycling bin, twice, in the pouring rain. (I was bundled up very warmly.)

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I got what I thought was a stomach bug Thursday. I began to feel better Friday. Sunday started very pleasantly, and then suddenly I got violently ill.

The blueberry scones and raisin challah I had considered treats to add joy to my life were probably the culprits. It seems I have developed an intolerance for gluten.

Spouse went looking online for information about celiac disease. There are lots of symptoms, so it is often misdiagnosed as all sorts of other things. I knew that, because years ago I had a friend who developed it, and he finally figured out on his own what it was. I have a current friend with celiac disease who I e-mailed on Christmas day to ask for information.

I’m not in any physical shape to have the blood test, or the endoscopy, to confirm a diagnosis.

None of the symptoms I had were enough on their own to go see my doctor, but looking at the list, suddenly a whole lot of stuff plaguing me for the last year or so makes sense.

  • Three months ago, I started getting red itchy spots on the skin around my abdomen front and back. I wouldn’t call it a rash, because there was only one spot or two at a time; once there was three, all in a row. I thought we had bed bugs. I’ve been sleeping on two towels for months now, trying to trick the bugs into going in search of Spouse instead. Somehow he never got bit.
  • The joints of my big toes, my inner elbows, and occasionally my hands, started to hurt a lot. I’ve been told by doctors that I have hyper extensible joints, so I thought perhaps that meant that my joints were more sensitive to overuse. I’ve been trying to remember to straighten out my arms regularly, instead of keeping them bent (for sitting at the computer, or reading a book). I also worried I was getting arthritis, or maybe already had fibromyalgia.
  • I felt myself getting progressively weaker, but I couldn’t pinpoint anything. I’ve always had a fairly sedentary life but in the last year or so, I’ve had to give up all sorts of activities that I still used to be able to do, but no longer had the energy for. It seemed like it was inertia, or maybe laziness. I never thought of fatigue.
  • I’ve been getting panic attacks since I was a child, but now I also have anxiety attacks. But I have anxiety disorders, so that didn’t seem weird.
  • I’ve gotten migraines since I was a teenager. Since we moved to Maryland, I started getting headaches whenever the sun has a certain intensity. Even from inside a building. Some days I wake up with one. But I have light eyes and light skin, and I’ve never tolerated high temperatures very well.
  • I’ve been cycling in and out of episodes of depression all my life. Yes, lately, sometimes I felt like my health was failing in some indeterminate way, but I thought that was the depression talking.
  • Pain in my abdomen that I thought was my kidneys, except that you’re not supposed to be able to feel your kidneys.
  • Lots of occasional gastrointestinal issues, that were vaguely troubling, but did not have the warning signs I knew to look for. I figured that sometimes my diet was lacking something.  However the episodes Thursday and Sunday were so severe that I knew something was really wrong. And it had to be something I was ingesting.

So it seems that I’m probably malnourished, and that’s why I have been getting progressively weaker.

Apparently celiac disease has a genetic component. One of my parents had colon cancer many years ago, and more recently developed diabetes. Because of that, I’ve been watching my sugar intake. A sibling developed lactose intolerance, so I began watching, then recently limiting, my dairy intake. I’m not in contact with most of my family of origin, although one of my parents keeps trying to talk to me, against my express wishes, using various other relatives as intermediaries. Somehow, though, no one has ever tried to tell me to watch out for this (or any other health issue). I could have, would have, modified my diet years ago, if I’d known this was a possibility.

Last year when I found out that I had a health issue that is genetic, and according to known family history seemed to indicate only one side of my family, I contacted all of my siblings and all of my cousins on that side, as well as the one cousin on the other side that I was friendly with, to give them all a heads up. Only 1 of my 3 siblings, and the cousin from the other side, responded at all. Nobody else even said, “Gee, that really sucks for you.”

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Living with Spouse is a lovely contrast to growing up within my family of origin. Taking him as my partner saved my life and my sanity. Throughout this process, he has been such a rock of support and encouragement. I feel confident that our present and future hold many more surprises — even some pleasant ones! — and I’m looking forward to finding out what they are.

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