April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.
—T.S. Eliot, The Wasteland
No one knows why, in spring, ulcers blossom along with lilacs. Maybe it’s the gravitational pull of the moon. My theory is that my skin expands and contracts as the temperature cycles from cold to warm to cold to warm again, causing it to crack like a concrete sidewalk at the end of winter and form more open sores.
Right now, I have nine ulcers on my fingers: four on the left hand, five on the right. To make matters much worse, an unusual ulcer on the knuckle at the base of my left middle finger got infected last week. The infection bloomed into cellulitis. The back of my hand puffed up and was warm to the touch—unusual for me, with my perennially cold hands—and made grasping painful.
My normal antibiotic regime made no dent within 24 hours. Fortunately, I was able to get in to see my rheumatologist on Friday afternoon (never let an infection go over the weekend—much harder to get medical attention without ending up in the ER), who consulted with an infectious disease specialist, who prescribed Rifampin, which is normally used for treating tuberculosis and to prevent the spread of bacterial meningitis, but is also used, in my case, for treating resistant strains of staphylococcus.
This was a new drug for me, but, thank goodness, it worked. I didn’t have to go on IV antibiotics, which I hate, because my veins are small and roll, making it hard and painful to insert the needle. If I have to stay on IV antibiotics for any length of time, I end up either having to be re-stuck about every three infusions, since my veins give out, or getting a PICC line under my right armpit (the left armpit veins are no good anymore, from past IV episodes), an extremely unpleasant procedure.
So now, thanks to the miracle of a more powerful oral antibiotic, my left hand is almost back to normal again, I’m IV free and feeling better.
Except for the aftermath of yet another frightening episode with infections. On Friday, waiting to see if the antibiotic kicked in, I kept monitoring my left hand to be sure the cellulitis hadn’t spread across my wrist and up my forearm. I had a bout of cellulitis several years ago when I could actually watch the redness move in a swath up my arm at a rate of about a half-inch an hour as I was driving home from work on the Mass Pike, racing to get to the infusion lab. I’ve learned since to catch symptoms early.
But even as I am meticulous with hand care and getting appropriate medical attention, an experience like this always reminds me how vulnerable I am—we all are—to sudden, inexplicable illness, flare-ups, accidents. It leaves me feeling shaken and uneasy for several days, until my body begins to heal and I realize that I’m still quite strong and able, despite the way my scleroderma can muster a stealth attack.
We all walk this earth, not knowing what comes next. Chronic disease just adds to the uncertainty—or perhaps, increases the predictability of uncertainty. If anything teaches that control is an illusion, it’s that.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.