What is this now, recovery day four? Maybe five? Four seems right. I do feel better every day, stronger and more flexible. I am starting to emerge from the six-week long fog too. I can think more clearly. It's probably a good thing that my brain is engaging again. There's only so long one can function with a head that might as well be full of beef stew and nothing else useful. I'm going to be spending the next six months playing catch-up, I can feel it.
The pattern changed today. Instead of my lab sending me an email that my test results were in, days before the doctor's office caught wind of it, this morning they called me and asked me to roll in as soon as I could. So late morning, I sat with the doc and a CU med student who was shadowing her, while she pulled up and printed my results. To say she was impressed was an understatement. Last time we tried to figure out what might have been the trigger for the lupus, and I told her how my whole world changed when I got mono in high school. That was the first time I remember being so light sensitive that I could barely leave the house. I said that my mother had been begging me to get tested for a chronic Epstein-Barr virus infection. Yeah. Oh, yeah. That was indeed my problem, the biggest source of fuel for the lupus fire. Where the reference ranges were from zero to about 18 for certain antigens, and a value in the mid-20s would have constituted a solid positive reading, my antigen counts were in the hundreds. Maybe more. One was just "greater than 600," as if they didn't bother to keep counting, it was so bad. I said it was like when you do a Zillow search on an entire metropolitan area without any filters, and the computer returns just the top 250 results, and tells you to go to hell for the rest. So the doc told me to be sure and thank my mother for insisting we check this particular virus.
Over the course of my whole life, or since I was sixteen more accurately, I've had recurrences of the feeling of mono, where I'd feel completely run down and weak for weeks at a time. I always said it felt like having mono all over again, but that must be impossible because everyone always said that once you have it, you're immune and it's over. So, it turns out that the common wisdom is flawed, and I knew it when I felt it. Whether these were also lupus flares, I do not yet know. I still have much to learn. Until I am told that they are conclusively unrelated, I will equate these things in my mind. I think I've hit the limit of where the primary care physician wants to steer my treatment. Today she entered the referral to a rheumatologist; I expect to get to know him (I think she said a man's name) very well. He's the kind of doctor one keeps in close contact with, especially with the other things that can come from Epstein-Barr virus (that have already occurred in my family).
It was a heavy load of information to soak in today. There was only one way to process it. After a two hour nap, I went and bought grain-free pizza and beer (for the man), and we sat outside by the fire for a couple hours. In Charleston I had built an Adirondack chair out of our old picket fence, and we've been hanging on to the pieces for the second one to match it for years. Chair number two was constructed today, with reinforcing pieces of new lumber (the first chair fell apart repeatedly, and badly cut both of us, him a year after me). We just need to decide how to build in a wine glass holder into them and they'll be perfect. I may have had to leave Bonfire Gardens behind, but I can bring a little of the aesthetic of BG back in Park West.
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