“But the beginning of things, of a world especially, is necessarily vague, tangled, chaotic, and exceedingly disturbing. How few of us ever emerge from such beginning! How many souls perish in its tumult!”
Sometimes you think you have everything figured out. You’ve found the key that unlocks the door and everything will be revealed. Except life so rarely works like that. Every ending is a beginning. Every solution is simply the beginning of another question. The wheel of fortune just keeps spinning. And I don’t mean the one that involves earning money by spelling words correctly, I mean the one that came before, literally “Fortuna’s Wheel,” depicted to the left. Welcome to the spinning wheel of life with autoimmune disease, where no spot on the wheel will get you a new car or a vacation to Hawaii, but it might get you back to where you started in the first place.
Several weeks ago I wrote about my most recent visit to the rheumatologist. He reviewed my bloodwork and asked how I was feeling. I had to answer honestly that my joints were killing me, especially my hands + wrists and feet + ankles. He took a look at them and said we needed to do more, that the Plaquenil was helping my other symptoms, but that if I was relying on the ibuprofen for my joints, I was just masking the inflammation and not altering the course of “the disease.” Of course, the problem in my case is that we don’t know exactly which disease entity we’re working with. (Still. Yet. Again. Have I mentioned I have trouble with labels? I have trouble with labels.) So “the disease” can’t really be pinned down. My symptoms (vascular and skin-related) last winter and my initial response to Plaquenil (also called hydroxychloroquine or HCQ) and prednisone, plus my negative Rheumatoid Factor (RF) suggested lupus. But after seeing the sad state of my joints as of a month ago, rheumatoid arthritis is back on the table. Are we looking at rhupus? MCTD? One of the spondylopathies? I still don’t know.
First, a little history. My understanding is that my grandmother—who died in 2002— had some form of what might now be diagnosed as Mixed Connective Tissue Disease (MCTD). She was originally diagnosed with “arthritis,” though how long ago, I’m not sure. Later, scleroderma was added, and I’m honestly not sure if there were other autoimmune issues at play. The scleroderma presented primarily as CREST, affecting her skin, GI system, and causing Raynaud’s. As a child, we were very close and I always loved going over to her house. Some nights I would sleep over so my parents could go out, and she and I would stay up late, playing cards and eating cookies.
She had all sorts of wonderful “devices” in her house that made things easier, even things like playing cards. There was an automatic card shuffler and wooden boards with horizontal grooves in them to hold a handful of cards without showing them to your opponent. She also had Tupperware that you could seal by pressing the center of the lid with your elbow and little squishy rubber things to make gripping a pencil easier. Not realizing that she had autoimmune disease, and not your standard run-of-the-mill Osteoarthritis, and that she probably couldn’t have shuffled a deck of cards or closed a Tupperware lid with her fingers alone, I just assumed these were fun gadgets. After all, I sometimes had trouble getting Tupperware containers to “seal,” and shuffling cards was endlessly complex for my 6- or 7-year-old-hands. I even assumed her hands, disfigured by the classic signs of inflammatory arthritis—ulnar drift, boutonniere deformities, swans necks—and the shiny skin of scleroderma, were what the hands of all “old people” eventually looked like. My father even tried to scare me out of cracking my knuckles by telling me I’d end up with hands like my grandmother’s. I know now that this is impossible, and yet I—so vain about my long slender fingers and pale skin—may end up with her hands regardless.
I don’t think anyone expected my grandmother to live as long as she did. I’m not sure they thought she would live past her 60s, and yet she lived well into her 80s. But the effects of her disease(s) and treatments took a terrible toll on her body. Everything from her teeth to her skin to her esophagus to her kidneys (and who knows what else) were slowly destroyed. It was only when I was older that I really began to understand all that she’d been through, working full time as a nurse while my grandfather fought in WWII. And that she’d continued to work after the war, mostly for economic reasons, but still an unusual choice during that era. I wish I’d been able to ask her about her diagnosis, the pain she dealt with, how her doctors treated her. Everyone says we like alike, in looks and in our stubbornness and tenacity. People have even assumed that photos from her teens and 20s are actually black and white photos of me. I just never realized until now how alike we really are. And I wish I still had her here. Because I’m scared, and I need her to assure me that I’m going to be OK, that life goes on, and that it can still be rich and beautiful and fulfilling and full of love, no matter which box gets checked, no matter what diagnosis code is written next to my name.
This entry was featured on the Patients for a Moment Blog Carnival: Revenge of the Conquered, or is it Avenge of the Conquered?