Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Waking Up Is Hard to Do

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It takes me a long time to get going each morning. No matter when my cell alarm vibrates, I press snooze at least three times before I can fully gain consciousness and know for certain that I am here, in my bed, not hugging a newly planted tree to protect it from a group of strangers who want to rip it out of the soil.

A relief to know I’m not stuck in those early morning dreams. But then there’s the matter of getting up. My body is always stiff, my hands often a bit swollen and my mind is sluggish. In winter, as steam heat slowly rises in our radiators, all I want to do is lie there under the blankets and stay warm.

The first step is, literally, always the hardest. I know my joints will feel better once I start moving, so I roll myself up to sit on the side of the bed, let my normally low blood pressure adjust, then push up onto my feet. This entire process, from first alarm to standing upright, takes about a half-hour. I just have to plan it into my schedule.

Some of this morning sluggishness is due to my scleroderma—unless there’s some kind of emergency and my adrenaline blasts me out of bed, I simply cannot accelerate quickly from zero to even 30 mph.

Some of it also has to do with not getting quite enough sleep. I know I should get to bed earlier, but I’m hooked on the Daily Show and Colbert Report to have a good laugh before turning in. If I were wiser, I’d watch the night’s episode online the following evening. But it’s not the same, and, besides, I prefer bandaging my finger ulcers, a 20-minute process, while watching. It’s become my evening ritual.

Even when both shows are in reruns for yet another vacation hiatus, I’ll find a different reason to stay up too late, like finishing the Sunday Times crossword or watching episodes from the first season of Mad Men.

But mostly, my slow morning trajectory just is. When I used to commute every day to Boston, often an hour-and-a-half drive in morning rush hour, it was extraordinarily hard to get up early enough to beat the traffic.

Now, working for myself and being able to set my own schedule, I have more flexibility. It’s a mixed blessing—the feast-or-famine stress cycle of finding clients for my marketing consulting is offset by the freedom of knowing I can get a few more minutes’ rest in the morning if my body just isn’t ready to move. I set appointments for late morning and early afternoon to maximize my attention and alertness, and work after dinner, as needed, to put in a very full day.

Which is why I stay up until midnight to let my brain unwind, and why I have trouble getting up in the morning. Recently I read an essay by William Zinsser, one of my writing heroes, describing how he used to get to his office at the New York Herald Tribune around 10 o’clock each morning. It made me feel better. At least I’m in good company.

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.

Stream of Consciousness

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It’s after 1:00 a.m. and I can’t sleep. One of my ulcers, that stubborn one near the tip of my middle left finger, won’t stop smarting. I try shifting positions, rubbing my hand, warming it under the pillow. Sometimes the pain is caused by a Raynaud’s spasm and eases as soon as my blood flows more freely.

But not tonight. I have to get up and redo the bandage. I don’t want to. It’s chilly in our bedroom, because I’m a fresh air freak and left the window cracked and it’s windy outside. But the ulcer stings and I can’t sleep. So I pull myself out of bed, grab all my hand stuff (bandages, Aquaphor ointment, Sorbsan dressing, cotton swabs, manicure scissors) and go into the bathroom so as not to wake Al (even though an overhead thunderbolt won’t disturb his slumber), turn on the light, cut off my bandage and redo the dressing.

This works, thank goodness. I must not have used enough Aquaphor the first time to salve the sore. Or maybe I didn’t cover the ulcer with a large enough piece of Sorbsan, an ecru-colored, felted material made of processed seaweed that binds with the ointment to create a gel-like cushion of protection. Or maybe it was the cheap CVS fabric bandages I use at night, which have some kind of waterproof coating that can irritate on occasion. I’m using my good, soft Coverlet bandages for this round. Not worth the night-time rationing routine.

So I go back to bed, snuggle under my blankets. And am wide awake.

Maybe it’s because I had to get up, even though my ulcer has finally quieted down. Or maybe it’s because I was writing well into the evening, eight hours of solid composing at the computer, working against a deadline to finish a client’s web content. Too much light from the computer screen before bedtime can affect your ability to sleep, I’ve read.

Maybe all that typing is why my finger was irritated in the first place. Except I don’t use it to type. I’ve become a master at touch-typing with only the fingers that can stand the pressure—and since I use a Mac wireless chiclet keyboard, the pressure is very light.

Maybe it’s because I’ve been immersed in words all day. When I write, I slide into a zone where an hour or two will disappear as the words fly from my mind, through my fingers to the keys onto the screen, and I won’t know what time it is. Even when I’m finished writing, the words whirl in my head, narrating story lines, fantasies, worries, what I have to do tomorrow, what I forgot to do today.

I lie in bed and the words swirl and swirl, until I remind myself that everything I’m thinking about will still be there in the morning when I wake up. I pour all the words into a large square box—this one is sea-foam green—close the lid, lock it and put it on a high shelf in the back of my mind where I know I can access it tomorrow.

Usually this works. Sometimes it doesn’t. Tonight, with God’s grace, it does, and I fall asleep. In the early morning, when my dreams are so sharp that I’m certain they’re real, I’m convinced I’ve been awake all night.

The sun shines through our bedroom shades, then slips behind a cloud. Wind puffs the curtains of the one cracked window. Half an hour after my cell alarm vibrates, I realize that I did sleep, for six hours, after all.

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.

The Cruelest Month

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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

My April started early this season, by a few weeks. With warming weather and spring’s promise have come ulcers and more ulcers—an inexplicable but oft observed trend in medical literature.

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.

Cutting Bandages

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Every morning and every night, when I get dressed and before I go to bed, I cut bandages for my ulcers. I divide them lengthwise to layer over my fingertips, then wrap a whole bandage around each finger to secure the half bandages in place. It’s become a ritual, this hand management, a routine essential to avoiding infection, a pit stop for damage control, a meditation.

For the past two weeks, as I traveled in Tel Aviv, Jerusalem and London, this ritual-of-necessity anchored me. No matter where Al and I were staying or who we were with, twice a day I had to stop and take care of my hands.

I cut bandages on my fold-out tray in a British Air Boeing 777 en route to Tel Aviv, on a bed in Al’s cousins’ apartment in Ra’anana before sundown on the Jewish Sabbath, at the kitchen table in our friends’ Tel Aviv pied-à-terre over a 1:00 a.m. heart-to-heart about letting go of your adult children, at an old oak table in our cousins’ London flat after our late night arrival from Israel, wanting only to go to bed and knowing I couldn’t, yet.

I was in the midst of cutting bandages when Mindi came to greet us at our friend’s apartment in Tel Aviv, the morning after we’d first arrived. I hadn’t seen her for nearly six months, since she’d left to make a life for herself in Israel, so I jumped up from the table, fingers half-done, to give her a big hug.

And I was cutting bandages last night, sitting on our own bed once again, relieved to have peeled off the day’s grubby dressings, blackened by twelve hours of travel. Were we really at the Tate Museum in London that morning?

Sometimes, the bandaging ritual during our journey was a damn nuisance, the last thing I felt like doing before leaving the house for the day’s adventures or when all I wanted to do was go to bed.

But at other times, it was peaceful, a time to collect my thoughts when everyone else was either asleep or away, an island of quiet to sort out what I’d seen and done and learned that day. As I’d cut the bandages, I’d listen to the familiar sounds of an unfamiliar setting—a wall clock’s tick, a dog’s bark, the click of heels on the floor above, the subterranean rumble of nearby Tube trains—and feel grounded.

I needed that stillness. Travel is so packed with newness, the unpredictable, the need to process so much information quickly and make snap decisions based on estimates of how your experience of your own world approximates this one, even though the two may be only tangentially related. Much as you’re constantly on the go, to fully appreciate the experience, it’s essential to slow down and just be.

So, I guess I have my bandages to thank for 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.