Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Fault Lines

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This past week brought more doctor’s appointments. The culture on my ankle ulcer came back positive for a rare gamma-negative bacteria. And, of course, I’m allergic to the sulfa antibiotic that is the treatment of choice.

So it was time to see my infectious disease specialist. And, of course, he was not available. Another very experienced specialist was covering for him, but when I asked for an appointment, I was told that his next available was in three weeks.

Now, I don’t know if the receptionist really understood what the doctor’s specialty is all about. But I wasn’t about to take no for an answer.

“This is an active infection,” I said. “I have to see him this week.”

She took my phone number and told me someone would get back to me. Soon after, I got a call from one of the nurses, who said the doctor had reviewed my test results and wanted to see me that day. Which I did. He gave me a prescription for a different class of antibiotics, and so far, it seems to be working.

It pays to be assertive, especially when dealing with the medical profession. Over the past three-plus decades, I’ve learned that you have to advocate for yourself. I don’t mean being obnoxious or yelling at hapless appointment secretaries. But medicine involves a lot of gatekeepers, some of whom insist on sticking to rigid rules of access. I do my best to be firm, polite, yet clear about what I need. That requires a willingness to push the envelope.

It also requires creative problem-solving. The other appointment that I needed was to see a wound care specialist. Several of my digital ulcers are somewhere on the skin damage continuum between second and third degree burns. I know they are going to take months more to heal. This is the worst they’ve ever been, and I need some serious advice.

When I saw my podiatrist about my ankle ulcer, he had referred me to the wound care specialist at his hospital, an hour-and-a-half from home. This physician is very good. But when I called for an appointment, I was informed that one of my other doctors, who is familiar with my digital ulcers, would have to send some medical notes.

Enter the world of HIPAA releases. I had two choices: to send records from my Boston Medical Center rheumatologist or from my rheumatologist at home. BMC, I soon discovered, would take 7 to 10 business days to process the written and faxed request. If I went through my local medical center, the request would only take a few days. But there was still the matter of then getting an appointment. All told, I estimated it would be a good month before I could actually be seen. Too long.

So, when I saw the infectious disease specialist last Wednesday, I asked his advice for a wound care specialist at my local hospital. He gave me the name of a vascular surgeon, and I then asked Al, who works at the hospital, to find out what he could. One of his colleagues, another social worker who knows this doctor’s work with patients, gave a sterling recommendation. I called the wound clinic and immediately got an appointment for this coming Thursday.

I’ve learned a great deal from living with scleroderma for three-plus decades about how to get the right care. You have to be tenacious, no matter how lousy you may be feeling that day. You have to understand the complexity of your disease, research about treatments, what’s covered under your insurance, what isn’t, how to find the right physicians, and how to get the answers that will really help you to heal.

And that’s just for starters. At the granular level, managing a chronic “pre-existing condition” is a whole lot more complicated—and stressful, and exhausting (not to mention expensive and time-consuming)—than soundbites or political slogans can ever convey.

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.

Image Credit: Zoshua Colah

A Little Progress

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I took a walk around the block Monday afternoon, my first such excursion in three weeks. The weather is starting to clear, and so are my back pain and the sore ulcer on my left ankle. All the leaves have unfurled, and the streets are cloaked in green. Crabapple petals scatter like pink snow on neatly trimmed lawns. The red tulips in our rock garden have bloomed, and the blue hydrangea that Al gave me for my birthday is taking root.

It’s a relief to begin to feel like myself again. Over the past couple of weeks, I was able to rule out a compression fracture in my spine and see a physical therapist who did a thorough evaluation. She confirmed my sense that I had sprained my back. No nerve damage, thank goodness. Heat treatment, the right set of stretching exercises, and a better mix of acetaminophen and ibuprofen are helping me to heal.

As for the ulcers on my ankle and fingers, I received some very good advice from my excellent podiatrist, who also knows a great deal about wound care. Among other things, he gave me some Lidocaine gel that has made a huge difference in my ability to tolerate my ulcer dressings while I wait out the healing process. He also gave me a special mesh infused with silver that is helping my ankle. Silver has natural antibiotic properties, and the results so far are promising. I’m awaiting the outcome of a culture to see if I need additional oral antibiotics.

I plan to get a consult with a wound care specialist sometime in the not-too-distant future for advice about better ways to manage my ulcers. I’ve been using the same approach for decades, and there are new techniques and treatment options that I hope to discover so that my skin doesn’t break down as badly again. No guarantees, of course, but this has really been a siege that I don’t want to repeat, if at all possible.

Meanwhile, the gloomy rain and chilly weather that have encased New England for the past few weeks are about to end. We’re expecting temperatures in the 80s by midweek. It can’t come too soon!

So, here’s to the end of a downright nasty spring. Summer doesn’t officially start for another month or so, but I’m looking forward to Memorial Day. If you’re going through a rough patch yourself, I hope you find the good medical care and healing that you need, too.

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.

Feed the Dragon

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This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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.

Image Credit: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

Routine Maintenance

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On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.

But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.

My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.

I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)

The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.

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.

While the Soup Simmers

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I’m writing on Sunday night, as the Egyptian potato soup simmers on the stove and our community radio station plays a Middle Eastern mix. I’ve been cooking all day for our Monday night Passover seder, and I’m feeling good. A lot better than I anticipated this morning, when I woke with pain in my ulcers, an aching foot and one thought: How am I going to get through the cooking marathon today?

I groused at Al. I rubbed my temples. I studied the long list of fruits and vegetables that I needed to buy before lunch and realized I’d forgotten to ask Al to pick up one key ingredient from the kosher market in Brookline (an hour’s drive from home) several weeks ago.

He suggested checking the Passover aisle at our local supermarket, just in case they had those kosher-for-Passover hearts of palm. I agreed, then thought of an alternative in case they didn’t. I knew Al stood ready to serve as sous-chef, as need, for all the chopping and peeling ahead. Time to dive in.

To my astonishment, when I got to the store, the Passover aisle was still well-stocked, including hearts of palm—three cans, even. I moved on to the second supermarket and filled my cart with fresh strawberries, blueberries, blackberries, bananas, a mango, avocados, cauliflowers, leeks, romaine lettuce, potatoes, beets, onions, garlic, celery, parsley, asparagus, baby spinach, eggplants. At the check-out, the cashier admired my choices and told me how much he loves vegetables (except eggplants). I told him how to enjoy beets in a salad (add gorgonzola and toasted walnuts).

By the time I got back home, Al had switched over our kitchen to all of our Passover dishes—the culmination of several days of cleaning and preparation. We went out for a quick lunch, and then I began cooking in earnest. The night before, I’d already started the pickled salmon, which marinates for a couple of days. Next up was curried eggplant. I was able to do all the peeling and chopping myself while Al worked on the yard.

Then came the Egyptian haroset, a mixture of dates, golden raisins, ground almonds and sugar syrup. Only one problem: when I placed the mixture in my little Passover food processor, it wouldn’t turn on. I tried another electrical outlet. No go. I asked Al to try it. Maybe I hadn’t aligned it properly. Zip. Four o’clock in the afternoon, and it was time for another run to Target.

I opted for an immersion blender and picked up a few other cooking items to make life easier for the rest of the week. Before we left for dinner, the haroset was well blended, cooked to perfection and chilling in the refrigerator.

By 7:30, I was back in the kitchen, separating nine eggs for the apricot sponge cake and cursing at the little pieces of eggshell that had dropped into the whites. But I persisted. Al helped me fold the meringue into the batter, the one part of the recipe I can no longer do.

Now the sponge cake rests upside down in its tube pan, cooling overnight. The asparagus are happily plumped with water, standing tall in their pan until it’s time to steam them tomorrow afternoon. The potatoes and leeks and celery and garlic and turmeric, salt, pepper, bay leaf and water have finished simmering in the time it took me to write, and the lovely mix is now cooling in the 70-year-old white enamelware that was once my mother-in-law’s Passover soup pot. Just need to add the fresh lemon juice before serving.

All that’s left for tomorrow are the spinach-cheese patties, the avocado-tomato-hearts-of-palm-pesto salad, the roasted cauliflower, the boiled eggs and the seder plate. That’s the easy stuff.

The prospect of cooking for Passover, with my once-a-year set of dishes, the crazy schedule, and the inevitable stuff that goes wrong, always overwhelms—especially because the holiday falls in the spring, when my ulcers are at their worst. But somehow, it always works out. And tastes great. And provides a beautiful setting for our seder. This year, more than ever, I am grateful that I can still make a splendid feast for family and friends, and focus on what really matters: what it means to be free.

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.