I sit here on a day when my illness is really getting to me emotionally. I had a huge weekend; I had girl’s night Friday, had to work Saturday, had birthday lunch with my parents, and traveled to Birmingham to see the doctor. I am worn out.
Looking at the list, it seems like a fun filled weekend with five hours of work thrown in. For any person without a chronic illness this might be the case. But for me, it wasn’t. I was asleep before 8 am on Saturday and had to force myself to finish the finale of Sons of Anarchy last night. I feel it in the muscles in my thighs, I feel it in the numbness in my arms, I feel it in the droops in my eye lids. And every once in a while, it brings tears to my eyes.
Monday’s visit to UAB was pretty par for the course. Do some more tests and arrange future visits. I always feel hope on the horizon at these appointments. Now if I can just catch up to that horizon.
My doctor took blood and urine to test to see if I had created any new antibodies after the vaccines two months ago as well as to check on my kidney function. While he was sticking me, he ran another ANA for Lupus just to be doubly sure. The doctor does not foresee me having made any new antibodies and that the test was important because I would not be able to get treatment without it. He foresees me getting on plasma transfusion so my body can use those antibodies. But instead of making guesses and leaving me in shadows, once the results come in, he is referring me to another doctor.
He has a partner in his group who’s a rheumatologist with a concentration in genetics. He will be the one to diagnose me and set up treatment. My current doctor and I are handing him all these tests, to speed the process. The antibody tests have to be sent off and the doc says that I should here back in about a week; the results were usually returned quickly. He made the statement that he believes that this immune disorder is the reason I have my kidney disease. That in itself is a major revelation. Also, I do have a certain clotting agent that makes me more likely to have clots and possibly strokes and other life threatening conditions. I am on low dose aspirin once a day to help prevent that.
Thanks to a Facebook friend and some research, I saw myself traveling down the road toward CVID, Common Variable Immune Deficiency. So far, I seem to be right on course, but my rate has been accelerated. While most people are not diagnosed till they are adults, the majority have to wait years to get to a doctor who could figure out the diagnosis. CVID does not fit the medical model that if sounds like a horse and looks like a horse, then it is a horse. I have seen firsthand this happen. I have presented with auto-immune symptoms and my doctor thought I had lupus. That is the nature of the beast– this zebra. CVID is hard to diagnosis because it looks like so many other things.
In comparison, I have been chronically sick since Memorial Day. I look at the symptoms of CVID, frequent sinus infections and respiratory disease, endocrine disorders, and see that it has been going on all my life. It just didn’t come to a head till I had an abscess burst in my tooth and the toxins flooded through my body and sent me to the hospital. Here I am so close to diagnosis and treatment. I really am a lucky one.
Am I Human
Or Am I Zebra?