It’s here! It’s here! The most wonderful time of the autoimmune disease year. Fall colors, cooler (but not cold) temperatures, sunshine levels that won’t make me sick, pumpkin spice lattes at Starbucks, and wood smoke. Pumpkins and autumn squash soup. New yarns at the yarn store and patterns for warm sweaters. Ugg boots!! Without fail I have a surge of joy and energy at this time of year. Just like the golden hour in photography, that time in the evening when everything is softened and has a glow of light to it, this is my golden hour of the year.
What’s wrong with the rest of the year you ask? Well, let me tell you: winter is a beautiful time of year, but for a person with systemic sclerosis and Raynaud’s disease, it is a miserable battle to keep extremities warm an opportunity to rock the wool socks, shawls and fingerless mitts. This year I plan to roll out some exceptionally warm longish sweaters; I have the yarn all ready to go. I have patterns for fingerless mitts that will go up to my elbows. I bought fleece Cuddle Duds. I am really going to try to handle the cold better this year; last year I rolled out of winter with more severe symptoms than I had in the fall.
Spring is a time of gardening, hope and struggle for me as I try to get the garden’s flowers (and roses!!) going while slowly accepting that new debilitating symptoms that I thought were related to the war against cold, but which remained in the balmy days of April and May, were actually real things. Darn! No wool sock or hand warmer will fix my problems… by the time I make appointments or call for help it is already summer.
Ugh! Summer! I was a teacher, and summer was that wonderful time of renewal and rebuilding that kept me going year after year. Now summers are so fraught that they seem to pass in a blur of lawn watering and visits to Kaiser. Really, I am just a mess all summer long. Here’s the highlights of this year:
- Summer started with me just a few weeks into the drug methotrexate (which I got after making a call for help in early May…) I was losing hair and taking it easy two days a week because of the drug’s side effects. Still, by juggling the drug schedule I was able to work a summer camp teaching kids how to spin and felt fiber. So fun. The camp was only 2.5 hours a day so it was perfect.
- In July I developed rare bone complications from the drug (well, don’t I feel special!) and ended up at an acute diagnostic facility. That was the end of the methotrexate.
- Icky symptoms reappeared with a vengeance. I had to wait a few weeks before I could start the new drug. It’s called purgatory drug holiday .
- UTI strikes. Seriously!! Antibiotics, barfing and yogurt happened.
- Rheumatology appointment: he starts me on CellCept with some reservations about whether my gut (which basically hates me…) can handle it.
- I start the pills. Woohoo! No problems except after two days…
- …UTI strikes again. Oops! I stopped the CellCept, gobbled antibiotics and yogurt, and skipped the barfing. Take that you ill-behaved gut!!
- Started CellCept again the next week. Hello heartburn, my old friend. Middle of the night vomiting and belly pain? Nope, nope, nope. My gut has definitely vetoed this drug! I didn’t even make it a week before I emailed my rheumatologist to ask for something else from the land of pharmacological wonders.
- Well, what do you know. There is another version of the CellCept that is a time release version that I should be able to stomach (see what I did there?). My rheumatologist and I had an email chat and he ordered it up for me.
- …and the insurance declined to approve it. What?!! I wanted to send my gut on over to have a chat with them. Two visits to the pharmacy, two phone calls and an invocation of the gastroenterologist did the trick. I scored the pills on the last Friday in September. Yep. That was the end of summer and it is now time for the golden hour.
I started the time-released version of CellCept 10 days ago. You know, I think that I feel better already. My knees have stopped hurting! I seem to have more energy. I think that there is less edema in my arms. I have started cleaning out cupboards and stuff. I am happy.
This is my year of systemic sclerosis (scleroderma): cold, pain, hope, struggle, persistence, and wonder. And this, my friends, is the best part of the whole dang year. I am full of joy with every red leaf and pumpkin that I see. I know that the snow is coming, but what the heck.
Today, today I am in the golden hour.