Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

calcinosis

Chain of Command

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For about a year, now, I’ve had a pit of calcium sticking out of the pad of my right thumb. It looks like a very small, gray pebble, but it will not budge. If I press on it or accidentally bang it, it smarts. It’s also an open wound that I have to tend very carefully to avoid infection.

Usually, when a bit of calcinosis finds its way to the surface of one of my fingers, I can either pull it out or it will pop out on its own. Not this one. Recently, when I tried twisting it with a pair of tweezers, the top broke off, but there remained a needle-like protrusion that is just as stubborn.

So, I finally gave up and saw my hand surgeon last Friday. One look under the fluoroscope, and we had the answer. That pit is the tip of a chain of calcinosis that stretches all the way down my thumb. I’ve known for years that I have a veritable Milky Way of calcium pits floating in both thumbs and other fingers, but never seen anything quite like this.

We discussed options and agreed that he would debride it in an outpatient surgical center. It would be foolhardy to try to clean out all the calcinosis, because (a) it will probably grow back and (b) the risks to my thumb’s ability to function are far too high, especially in my dominant hand. So he’ll just remove a bit at the top of the chain, so I can use my thumb with less pain. We also agreed he’d put me out rather than use local anaesthesia. Too much digging around in my thumb would make me too anxious.

He ribbed me that I always bring him difficult challenges, and I teased him back that I didn’t want him to get bored. This is the same surgeon who saved my hands two-and-a-half years ago from horrific ulcers that lifted up to reveal bone and two broken knuckles, so I trust him completely. Back then we built a great rapport and mutual respect. He told me I should teach a course on wound care.

Now I await word about a date for the procedure, as well as confirmation that the surgical center he recommended is in-network for my Medex BC/BS plan. There’s a back-up, if that doesn’t work out. Always essential to check, first.

So, once again, my hands are in good hands. I wish I didn’t need to see my surgeon, but I’m very grateful that he’s there.

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. Please view Privacy Policy here.

Image: Sonny Ravesteijn

Progress Report

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A year ago today, I was two weeks away from my second hand surgery to repair damage from severe ulcers in five fingers—damage that had exposed bone and broken two of my knuckles. My left index and right pinky were held together by steel pins, and I didn’t know if I would lose them in the next procedure. My hand surgeon felt that skin grafts were worth trying, but we didn’t know if they would heal properly. He had warned me at the outset that these were the first of many surgeries.

What a difference a year makes! I’ve been extremely fortunate. A gifted surgeon, excellent wound care and 60 dives in a hyperbaric oxygen chamber, plus effective occupational therapy sessions (and health insurance to cover it all), combined with a lot of support from family and friends enabled me to heal.

And I am cooking again. Al had picked up the slack in the kitchen for well over a year, ever since the ulcers became too painful for me to handle any utensils. He cooked up some great meals and discovered that he really enjoyed experimenting with new recipes. I was grateful for all that good and healthy food.

But a part of me missed cooking. It’s never been a major focus in my life. I don’t spend hours pouring over cookbooks and savoring the thought of new recipes. However, I do like making a good meal, especially for the holidays. It’s exhausting, but satisfying to turn out a gourmet, multi-course dinner. It gives me pleasure to prepare food that brings others enjoyment.

At some point over the summer, I began baking bread again for our Friday night Shabbat dinners. Al had gotten quite good at this, and he was deservedly proud of his delicious braided loaves, but he was happy to have me pick it up again. I also was able to help clean up after meals, which had been impossible with the ulcers and ensuing surgery.

The Jewish New Year, Rosh Hashanah, arrived just a few days after we came home from Europe last month. I knew it would be too much to have a big crowd, so we just invited a few close family members for the first night. But, to my and Al’s surprise, I was able to do most of the cooking myself. He served as sous chef, cutting vegetables. Even still, I was able to handle the chef’s knife and do a lot of prep myself. Everyone enjoyed the meal, and I felt like I had crossed the finish line.

I have been doing most of the cooking ever since, although I still have to be careful. I developed an ulcer in one of my skin grafts shortly after we returned from our trip, but I think this was actually caused by some calcinosis lurking just under the surface. It is gradually healing. Al is enjoying a well-earned reprieve, although I recruit him for help as needed.

Mostly, I’m amazed and extremely grateful that I can actually do so much with my hands again. It’s taken all this time to relearn how to use them, and I certainly have my limits. But it’s wonderful to see that, despite all the challenges, my body can truly heal.

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. Please view Privacy Policy here.

Extraction

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I spared myself a visit to my hand surgeon last Friday. Don’t get me wrong. He’s a great physician. But the presenting problem resolved itself, so to speak.

The presenting problem was a piece of calcium the color of volcanic ash that has been emerging from the pad of my right thumb for nearly a year. It almost surfaced back in the winter, then receded for several months before pushing closer and closer to the top layer of skin. Finally, a few weeks ago, my thumb  erupted.

But all I could see was the tip of the iceberg (mixing metaphors, here—for some reason, the calcium deposits that my scleroderma manufactures have changed in color from white to dark gray in recent years—no idea why). Slowly, it revealed more of itself, but not enough so that I could pull it out easily.

So I resorted to trying to gradually soak it out of my thumb, using peroxide morning and evening, plus antibiotic ointment with gauze and fabric bandages to protect it during the day and overnight. This seemed not to accomplish much, other than protect me from infections. I finally decided to make an appointment with my hand surgeon to see if he could extract it in the office. I was hoping that would help the pit to make up its mind to come out on its own.

Still, it needed more coaxing. This required the proper tools. I turned to my father’s old dissecting kit. Made of black fabric, lined with purple felt, it contains everything you need for high school biology to dissect a frog, including a pair of very fine needle-nosed tweezers. I have some unkind memories of those tweezers—my dad used them to pull splinters out of my fingers when I was a kid, a procedure that never failed to make me squirm and scream.

However, they are the best tweezers for pulling calcium pits out of my fingers (especially since I’m the one doing the operation). Every morning and night last week, leading up to the scheduled Friday appointment, I wiped the tweezers with an alcohol pad, daubed peroxide on my thumb, and proceeded to try to loosen up the calcium pit from surrounding skin.

Finally, on Thursday morning, I got lucky. The calcium pit gave up and I plucked it out—a quarter inch long and eighth of an inch in diameter. The biggest pit I have ever extracted. Lots of blood, but pressure stanched the flow. I filled the hole in my thumb with antibiotic ointment and covered it up. Then I cancelled my appointment.

A few days later, the skin has nearly filled in. As strange as this disease gets, it’s always a relief to see that my body can heal itself, 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. Please view Privacy Policy here.

Image Credit: Jack Ebnet

Tin Man

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Two-and-a-half years have passed since I last had calcium removed from the bridge of my nose, an unhappy complication of my particular variant of scleroderma. So it was that I found myself Monday morning in the exam room of my ENT plastic surgeon, once again assessing what looked like a gray clump just below the skin.

According to my medical records, this is the sixth time I’ve had the procedure over the past 15 years or so (fifth time by this specialist). So I was pretty sure of what to expect.

Except my disease had decided to play a little trick. Instead of the calcium being content to attach to my septum, it had sprinkled itself into the skin, as well. This meant that he would have to remove an ovoid-shaped centimeter of skin above the clump, to excise all the calcium sprinkles as well as the main culprit.

“You’ll have a scar,” he said. I replied that I didn’t care. No worse looking than a gray bulge on my nose, and certainly easier to cover with a little foundation.

The main issue for me was to avoid lidocaine with epinephrine, the local they gave me last time that caused heart palpitations, back pain and a total sense of being out of whack for about 24 hours. He prefers it because it reduces blood flow to the excision, but I’ve had this procedure done enough times before that combo was popular, and I knew it could be done.

The team—a resident, a fellow and my doc—conceded to my request, and we went ahead. Five shots of lidocaine later, the bridge of my nose was numb. I could not feel the scalpel. But as has always been the case, I could certainly feel the grinding of the surgical tools as he scraped away the calcium. Some of the tiny pieces flipped out, one onto the corner of my closed eye, another on my neck. Within about five minutes, he’d removed it all.

Seven sutures and the incision was closed (although, as he was stitching me up, he wondered aloud if the sutures would actually pull the skin all the way back together—which, he added, was not a problem, as a bandage covering the incision would enable it to heal, but this was rather disturbing, as I imagined exposed bone on the bridge of my nose—then he remarked that it was closing up just fine—good grief).

Then came the surgical strips. First some (I believe) antibiotic ointment and one strip. Then some kind of liquid glue that smelled a bit too much like Duco Cement, then more layers of the strips. When they were done, my nose looked like the Tin Man’s from the Wizard of Oz. A little of the glue dripped into the corner of my right eye and burned like crazy.

“I said to keep your eyes closed,” he chided. Thanks a lot. Fortunately, the resident was more helpful with some sterile saline eye drops.

He was also kind enough to give me a prescription for a few Vicodin, after the specialist left the room. (The latter considered pain meds unnecessary and assured me that Tylenol and Ibuprofin would be ample, but I’ve been through this enough times to know that the first 24 hours can be quite unpredictable for pain.)

Al had accompanied me to the appointment, thank goodness, because there was no way I could drive home with a burning eye. It took dozing in the car for an hour plus a two hour nap at home to ease the inflamation. So far, as I write on Monday afternoon, I’ve been able to avoid the Vicodin, but it’s good to know I have it available for sleeping, if necessary. I also took the precaution of consulting with my infectious disease specialist ahead of time regarding taking an antibiotic prior to the procedure and for the next seven days, because I am so prone to infection.

So, now, it’s all about healing. I have to keep the steri-strips on for the better part of the week, unless they fall off by themselves. One is taped to pull up the tip of my nose a tad, to relieve stress on the incision. Eating and drinking feel a bit weird, as a result. I have to be extra careful if I have to blow my nose. But I can sit at my desk and do a little writing. The weather is quite warm, which is best for my circulation. And it’s done . . . at least for another couple of years.

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. Please view Privacy Policy here.

Image Credit: The Tin Man. Poster for Fred R. Hamlin’s musical extravaganza, The Wizard of Oz. Poster print, lithograph, color, 105 × 70 cm. Created by “The U.S. Lithograph Co., Russell-Morgan Print, Cincinnati & New York.” Library of Congress, Prints and Photographs Division. Courtesy of Wiki Commons.

Outlier

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photoI am typing with three fingers on my right hand—middle, ring and pinky—and three on my left—ring, pinky and thumb. Usually, I use my right thumb as well. I actually had to stop and take attendance to figure this out just now, as I’m so used to compensating for digital ulcers that I automatically adjust how I type to which fingers are most healthy.

But my right thumb is out of commission for a few weeks, and my right ring finger, while occasionally useful at the moment, is also in need of a rest. Last Thursday, I finally had hand surgery to remove excess calcium deposits from both fingers that were interfering with my grip. Overall, I think it went well. I’ll know for certain next week, when I’ve healed more and the sutures are removed. I’m glad it’s over. I don’t want to repeat the experience any time soon.

The actual procedure went smoothly enough (despite our arriving nearly a half-hour late to the hospital’s ambulatory surgical suite, due to excessive rush hour traffic, which did not help my anxiety level that morning). Everyone was pleasant, informative and reassuring as they prepped me for surgery. I was glad to see my hand surgeon, who chatted with me as he marked my fingers with a purple felt tipped pen (“Yes” with an arrow pointing to the incision spot on each digit).

But there is a routine, auto-pilot aspect to the process that’s easy to succumb to (they must know what they’re doing, right?). Being assigned the role of patient—stripped down to a johnny and rubber grip socks, lying on a gurney, with your hair in a paper surgical cap and your glasses taken away—renders you more compliant. And vulnerable. In retrospect, I realize, from many years of dealing with the medical profession, regardless of setting or situation—I needed to be more assertive.

The IV nurse’s first attempt to insert a cannula in the back of my left hand was doomed to failure. I had warned her of my small, rolling veins—far too many experiences with IV antibiotics in past decades have rendered them hard to tap. But I didn’t think to stop her from trying, which I should have, because it really hurt and it didn’t work. Per normal, whenever I have blood drawn, the vein in the crook of my left arm was the right spot.

Next, the anesthesiologist came in to speak with me and asked me a bunch of questions about prior surgical experiences and my recent echocardiogram. But when I proceeded to give him a more detailed summary of the report, he dismissed me with the fact that he’d read it already (I certainly hope so, but then why ask the question?). At least he seemed to hear me when I said it takes me a very long time to metabolize anesthesia of any kind. “We’ll go on the lighter side,” he assured me.

The anesthesiology nurse was a bit more approachable and reassuring as he began the light sedative cocktail infusion that would help me relax during the procedure. As he pushed me into the OR, I was already starting to sink into a featherbed of valium. This was a good thing, and the addition of fentanyl made me quite comfortable (as comfortable as you can feel, under an extra layer of blankets because the OR is so cold—to keep the surgeons from overheating under all their gear, according to the anesthesiology nurse—when your head is being covered with a blue paper surgical drape and your hand that you can no longer see is being placed in some kind of protective sleeve and doused in chilly disinfectant). There was rock music playing—nothing I recognized, but good music, all the same.

Then came the local shots, which hurt like hell for far too many seconds—one in the fat pad beneath my thumb and the other, beneath my ring finger. The anesthesiology nurse was kind and comforting, standing by my left ear. Soon I felt nothing in my hand except odd pressure. One of the surgical team hummed to the music. I alternately closed my eyes and stared up at the surgical drape, which was perforated in the shape of tiny stars, as the team scraped out intractable globs of calcium, surrounded, my surgeon explained, by some abnormal cells that were essentially trying to encase the crud—like a tree closes off a wound. No wonder the stuff wouldn’t come out on its own.

Samples were sent off to pathology, and I was wheeled back to my berth. The whole procedure took about a half hour. Al was surprised to see me sitting up and drinking ginger ale when he was called back to my side. I was glad he was there.

I had hoped to see my surgeon again before leaving, but he was busy with other patients. His resident came by, instead. And here is where, once again, I found myself struggling to get my points across. I am allergic to oxycodone (Percoset). If I need a heavier pain killer, I take hydrocodone, the active ingredient in Vicodin. I thought I had some at home from a prior surgery, but didn’t recall. But he would not write the prescription. It wasn’t in their protocol. I don’t know if this is a reaction to the tighter restrictions on opiodes, but it made no sense. He wouldn’t budge.

In addition, I asked for a prescription of my most effective antibiotic. I had discussed this with my surgeon, who agreed it would be a “good idea” to start it when I got home as a preventive measure, given my propensity for infections. I had some left over from a previous infection, but not a full bottle. The resident informed me that research has shown antibiotics as a prophylactic neither help nor hurt, so he wouldn’t write the scrip.

“If it makes you sleep better at night, you can take what you have,” he said. In essence, he was telling me I was taking a placebo. I was really frustrated, but I was also exhausted and just wanted to go home. So I didn’t insist on seeing my surgeon and dropped it, knowing I could call my other docs and take care of it. The resident confidently told me that I would have minimal discomfort from the procedure and left.

As it turned out, it was a good thing I had some Vicodin that had not expired on hand. It took 18 hours for the local anesthesia to work its way out of my body—I could not assess the pain level before I went to bed that night, except for a glimmer of a warning of a problem in my thumb. I started the antibiotics and took one Vicodin before going to sleep.

By 5:00 a.m., I awoke with significant pain in my thumb. On a scale of 1 to 10, it was a 7. A second Vicodin didn’t really make much difference, because the pain train had already left the station. It took the entire day of alternating Tylenol and Ibuprofin, plus distracting myself, to get it fully under control without making myself too queasy from more Vicodin, even as the initial doses were essential to the whole mix. Al stayed home with me again, taking another day off from work, because I was so uncomfortable from the pain and woozy that I was afraid of falling. I missed the follow-up call from the hospital and decided not to return it. What were they going to tell me that I didn’t already know, better?

By Saturday, I was up and about, and a couple of days later, I’m back to almost normal, just managing the wounds. In a few weeks, I hope my right hand will be more functional. I’ve written this long entry, which is good progress.

But my experience reminds me that I have to be assertive, whatever medical setting I find myself in. There are times to listen and learn, and times to speak up and educate. Scleroderma does not fit neatly into a protocol. I am an outlier on the bell curve. The sooner those who seek to attend to my medical needs understand this, the better we’ll all be.

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.