Here I go. My long suffering from a pervasive autoimmune disease that’s left me with an arthritic spine from C5 to L5, torn up my gut for 50 years, bouts of psoriatic arthritis in random joints, blistered my hands relentlessly, lost much of my hearing, turned my thyroid into what I imagine to be something akin to a withered black prune, vitiligo, caused me to lose hair while shedding waxy flakes of scalp psoriasis, have pitted nails, periodically taken away my ability to walk without crutches, and finally caused me give up wheat, barley, shellfish, red wine, and peanuts, has finally come in handy. I qualify for Phase 1A of the vaccine.
I do feel guilty. Since making so many lifestyle changes, I pass for healthy, I pass for someone whose body hasn’t been consuming itself for 50 years by nibbles and crushing bites. I walk, I row, I garden, I jump rope. Today, I’m mostly operational, but I did it without, in fact, in spite of modern medicine.
I appreciate that the vaccines are a medical and scientific triumph. I believe in the process. But there are gaping holes. Nagging, complicated diseases like mine, diseases of women (except the flagship of breast cancer), diseases of people of color, and the rare diseases of the few remain prohibitively expensive to treat, frightfully understudied, and uncured.
My journey started when I was a kid. I (oddly for someone of my WASPy heritage) developed lactose intolerance. I also was short for my family, and had started to develop blisters on my hands. This was back in the 70s and autoimmunity was little known, but Celiacs was a diagnosis that could have been made, but was not. I should have been tested then. By the time I was in my 40s, I couldn’t stand properly from back and leg pain though athletic and maintaining a healthy weight, and I couldn’t use my hands effectively because the skin was so thickened, and I was popping Lactase pills like M&Ms just to eat. I was on thyroid meds, and had a closet full of ineffective tubes of medicine. When I asked doctors about changing my diet, they scoffed.
After insurance declined some back surgery, I switched to sleeping in a hammock and gave up seeing the doctors for a while. I had gained some weight from inactivity and went on a low carb diet. I started to feel somewhat better. It took a while to sort out, but after a couple years of playing around with elimination diets, I figured out the several things that my body was reacting to. I have some permanent damage. My neck is past the point where surgery is advisable, and my hands are intermittently numb. My lower back is stiff in the morning, and so are my ankles, but these are manageable. I also take a thyroid and anti-inflammatory pill each day. But like I said, I pass for a reasonably healthy person these days. It’s been a medical failure though.
I am grateful for my COVID vaccine, and I believe in Science. I know that medical science isn’t finished yet, but it can do a lot better.
