Out of the Blue

I have not looked at, or even thought about, this blog for quite sometime. On March 13th, 2020, I was preparing to go home from work for what we all assumed would be a two week break while we worked out how we could keep a college campus open and still manage to stay healthy in the face of Covid-19. We were closed to the public that afternoon as we scrambled to clear out our offices so they could be deep cleaned and sanitized. My assistant and I went through the building, wiping down doors and surfaces. We talked about what we would do to stay safe when we returned. We shared our worries - I am younger than she is, but her health is better than mine. Still, we both fall into a high-risk category for severe or deadly infection from the novel coronavirus. We filled out forms to enable us to work from home for the next two weeks, and I put together a list of tasks for us to complete during our time out of the office.  Two weeks turned into five months - 2020 became the year that wasn'...

Let me share with you the shape of a day since I developed this autoimmune disease: I wake up. The room is pitch black, partially because I have purged it of all electronics including my alarm clock with a digital display, partially because I have the blinds closed, and partially because it is four a.m. and the sky hasn't begun to lighten yet. The first thing I'm aware of is the pain in my right shoulder and the inability to close or fully open the fingers of my right hand. Next I feel pain in the small of my back - this has been with me since July fifteenth; I don't think it'll be leaving me any time soon. I try a cautious stretch, and hear the succession of pops and crunches as my joints stir for the first time today. I assess the damage. Will this be one of those days - still infrequent, thank God - when I just can't get out of bed? Will I be able to shake off the stiffness and stretch out the soreness and get to work on time? Or will it be the kind of day wh...

I had the final visit with my current rheumatologist today. If you haven't been keeping up, let me recap: I started seeing this particular doctor in January. I have been unhappy with his level of involvement from almost the first visit. I decided to change doctors when my current rheumatologist took over a month to give me results of an important blood test despite my having called and left several messages. Then when I saw him again, he wanted to make important decisions about my treatment based on results that were six weeks old from a blood test that had been done only a month into the treatment plan. In March, I made an appointment with a different doctor, but because the waiting lists for specialists in this area is so long, the first appointment I could get was at the end of July. About a month ago, I injured my right knee while walking. I heard a pop and then there was bruising and swelling. It was somewhat better in a few days, but every time I am more active - for active...

I never thought I'd spend so much of my time writing about pain. Looking back over the years I've been blogging - since 2008, though those old posts don't exist anymore - I can see that by far, most of my posts have been about pain, either emotional or physical. I used to write about emotional pain - the result of abusive relationships, loss, and sexual violence. These days I'm more caught up in physical pain, though emotional pain still has it's unfortunate place. When I was a kid, I mostly ignored pain. I was raised that way. If I complained of a headache I was invariably told, "you're too young to get headaches" and I went on with whatever I was doing. Obvious sickness received whatever treatment was necessary. My parents were not cruel, but they were practical; they knew that working on a farm was physically difficult and that injuries would occur and that pain would be a fact of life. They trained me and my siblings to work through and push past...

I had my third rheumatology visit this week, and this visit was all about pain. In addition to getting a baseline on my joints and mobility, my doctor ordered another full set of bloodwork in order to gauge the effectiveness of the Plaquenil. But all that was sideline stuff to me. I was interested in talking about pain. How do I manage it? How do you treat it? I am not happy with the answer I received. I presented my doctor with a month's worth of journal pages detailing daily pain levels. I told him how many times I'd had to go into work late or leave early due to pain. I described the really difficult days I've been having and asked about options for pain treatment. His answer was to take me off the anti-inflammatory I'd been taking and give me a steroid shot. I asked him what my other options were. He didn't offer any. So I took the steroid shot. The nurse asked me to call her in two days and tell them if my condition had improved. I said I would. I was - and...