More concerns about scleroderma

I wrote recently about how my childhood illness, scleroderma, has come out of remission and I just started treatment. Something I've been existentially grappling with is that one arm of the disease is systemic and can affect the joints, leading to mobility issues. I don't have any of the tell-tail signs of that part of the disease (Raynaud's phenomenon, joint tightness and pain, calcium deposits, widened blood vessels, or esophageal dysfunction), though my fingers have occasionally been sensitive to cold in the last couple weeks and I did notice this weekend that both of my thumbs and index fingertips have suddenly developed rough and peeling callouses. I can't pinpoint where they would have come from since I haven't even been drawing much in the last week (and obviously not with my non-dominant hand) and haven't come in contact with any irritative cleaning products. I'm not washing my hands anymore than I normally do in these times and the rest of my hands are unaffected. Peeling and irritation of the fingers and hands is one symptom of the wider spread disease, which I've seen crop up frequently in an online scleroderma support group. Many who suffer it eventually lose the ability to write clearly, or completely lose any skill involving fine motor skills. The prospect of losing mobility in my hands has sent me into an (unhelpful) panic and the last three nights I've had nightmares about the disease progressing both neurologically and digitally. In one, my parietal bone cracked open as if it was a set of tectonic plates with one crashing over the other, and I could feel blood coming out of the resulting fissure. In another, I watched the color drain from my fingers when I held something cold and felt all of my fears confirmed.

I'm trying to not fall into the trap of believing every little ache and pain is a symptom. But I'm also grappling with the reality that time is a limited resource. I spoke with a friend yesterday about how much I am holding myself to the expectation that I should be drawing all of the time, otherwise I will never make significant progress when I go back to working full-time and commuting into work every day. She reminded me that we are living in troubled times, made up of violence, a social justice movement spurring necessary pain and self-reflection and learning, the ongoing pandemic, and a personal illness whose treatment puts me at higher risk of the coronavirus; it's not healthy to put additional pressure on myself. But at the same time, I worry that a couple years from now I will no longer be able to draw and I will lament the days I wasted when I still could. The only way to make myself feel better is to keep working hard, but at the same time, I don't want the drawing itself to be a source of stress. Stress doesn't result in good work and it doesn't exactly slow down autoimmune diseases.

Anyway, that's just a little bit of where my head is at this week. I'm still chipping away at the comic. I just don't have my head in the game like I did back in March and April.

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Kendall Square and learning in progress