Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Snap Judgment

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Even as I’ve adapted to my “revised” hands a year post-surgery, sometimes they still spring a surprise on me. I was working on a sewing project on Sunday, feeling quite pleased with myself that I could manipulate the fabric, stitch with great accuracy on my sewing machine, serge precisely to finish raw edges, iron and steam as I went along to get the right finish.

Then I noticed some red stuff on the handle of my iron. At first I thought it was just some shmutz from the fabric, which is a reddish brown and tends to shed. Then I looked at my right hand. Sure enough, without realizing it, I had cut the tip on my right ring finger.

Now, this can happen to anyone, I suppose, but for me the issue was that I didn’t feel the cut at all. This is one of my fingers that was partially amputated last fall due to ulcers gone wild, and the nerves at the tip are no longer as sensitive as they once were. Fortunately, the cut was only superficial, and I hadn’t dripped any blood on my project, which would have been a mess. But it was disturbing.

How could I have missed it? As I cleaned and bandaged the finger, I reviewed what I’d been doing in the past hour or so. Then it dawned on me: I have a lot of trouble manipulating pins for this project, because some of the fabric is densely woven and my fingers are now too short to leverage even a long, glass-head pin through all the layers. So I had tried using small binder clips, instead, to hold the pieces together. But I couldn’t pry them open far enough (again, an issue of finger strength), so I used a pair of pliers—and the clip snapped away from the pliers and nipped my finger. Ouch. It smarted, but eased up, so I didn’t think I’d really hurt myself. Apparently, however, that’s what did the damage.

I was able to keep sewing after I took care of the cut (and wiped the blood off the iron handle). I’m very happy with my slow but steady progress. But I realized that I have to be more vigilant when I’m using sharp tools. I may have learned how to use my hands again, but they are simply more fragile than they used to be, and I must pay closer attention to any pain sensations, even muted. Nerves are a first line of defense, to warn us when we’re endangering ourselves—but the sentinels in my fingertips are no longer operating at full strength. Time to call in the reserves.

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.

The Poppies Grow

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Sunday dawned sunny and brisk here, one of those sharp-shadowed November days when the light accentuates every ridge of bark and edge of brick like a finely detailed etching. I bundled up in multiple layers and headed downtown for our city’s annual Veteran’s Day parade, not out of habit, but because this was no ordinary November 11. It marked the 100th anniversary of the end of World War I, and I wanted to be present.

For the past few years years, I have been working on a novel set in the Great War, in 1915, and my research has given me a deep respect for the tremendous sacrifices made during that horrific conflagration, as well as for the ways in which the Treaty of Versailles that redrew post-war boundaries on three continents shaped so many of the geopolitical conflicts that we face today.

Four summers ago, Al and I traveled to Europe so that I could gain a stronger sense of place for my novel. We walked overgrown trenches, witnessed corroded but still live munitions that continue to emerge from Belgian soil (the so-called Iron Harvest), paid respects to row upon row of white grave markers in military cemeteries, discovered delicate red-orange poppies waving in Flanders Fields. They flourish in old battlefields because they favor earth that has been disturbed.

And the earth was disturbed, shredded, pounded to a muddy, barren pulp. Millions upon millions died defending, gaining, losing, regaining mere yards of turf between the trenches. In the end, the so-called peace treaty for the War to End All Wars imposed such economic hardship on Germany for its aggression that Teutonic desire for revenge set the stage for World War II.

I thought about all this as I watched the bag piper stride beneath an archway made of a huge American flag held up by two opposing fire truck ladders, as a handful of aging Marines in their red jackets and caps passed me carrying the Stars and Stripes, as units of JROTC high school students marched by in uniforms, as police rumbled past on motorcycles. The crowd was thin but respectful. A little girl handed me an American flag to wave. My fingers went numb every time I took a picture, because it was just that kind of chilly New England fall day.

The parade culminated at a memorial to World War I veterans that marks one of the entry points to the city’s downtown. I had passed it many times over the years, but never actually entered—a semi-circular granite wall engraved with the names of battles where Americans died in the War’s last year, surrounding a modest plaza with a flagpole. The mayor spoke of local residents who served and died in the War. He drew parallels between then and now and the divisive, dangerous politics of our times. Other city officials made a few remarks and laid a red-white-and-blue wreath at the flagpole’s base. A soldier read In Flanders Fields by John McCrae.

When we were in Belgium, we visited the site of the field dressing station where Lieutenant Colonel McCrae, a Canadian surgeon, artist and poet, saved soldier’s lives and wrote his famous memorial lines. That is where we found the poppies, still growing. They were wild, scattered amidst the high grass, smaller than I had expected.

McCrae’s poem ends thus: “If ye break faith with us who die | We shall not sleep, though poppies grow | In Flanders Fields.” On this centennial, with so much at risk in the world, I hope and pray that we can remember the somber lessons of World War I, the tremendous sacrifice of life, the hardships and grief and loss, and find our way through this difficult time to true and lasting global trust and cooperation for the betterment of all. Nothing less than the future of our planet hangs in the balance.

Poppies in Flanders Fields, Belgium

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.

Wild Goose Chase

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Canada geese can be a nuisance, crowding public green spaces, spackling parks with poop. But they can also be magnificent. I always love watching them fly, honking signals to form their undulating V. Strangely, I haven’t heard them yet this fall, migrating south, but I expect to, soon, as the days grow noticeably colder.

Those geese may be wild, but they are certainly organized. I cannot say the same for our local CVS pharmacies last week, as I tried to chase down a refill on a prescription to keep me warm.

Now, this medication is a vasodilator that I need to control my Raynaud’s. It’s a key part of my regimen year-round, but all the more important as temperatures drop. When I realized I had only three pills left early last week, I ordered my final refill on this particular prescription via my CVS iPhone app Sunday night. Normally, I get a confirmation text that the refill is in process (which I did), and then another text when it’s ready for pick-up within 24 hours (which I didn’t).

Hmmm. Time to follow up with a phone call. The pharmacy staff who answered the phone on Tuesday told me it was on order and would arrive later that afternoon. Fine. On Wednesday (one pill left), I received a text that a refill was ready for pick-up. So I went to the store, expecting to get my scrip and be on my way.

However, as it turned out, the refill was for a different med, one that I actually did not want refilled (it was on autopilot and I didn’t catch it in time). The medicine I needed was still on order. I inquired why. So it turns out that my local CVS did not have any of the required pills in stock, and none were available from the manufacturer (what?), and only one other CVS in the city had any. The clerk transferred the prescription to that store, so I wouldn’t lose any more time (theoretically), and I went home.

By Wednesday afternoon, still no text that the scrip had been filled. Hmmmm, again. I looked up the address of the store in question and discovered that there were two different stores on the street she had mentioned. So I called both. Had they by any chance receive my prescription? Nope. Even if they had (they could see it in the system) there was a problem. Why? Because my scrip was written for the generic version of the drug, not the brand name. And no CVS in the entire city had the generic pills in stock. I was directed to yet another CVS, on a different city street, that had the brand name showing up in the computer.

By this time, I was getting pretty annoyed. Already it had taken me more time than I had available to track this down. And it’s not an unusual drug. There was not one, not two, but three CVS stores on the newly designated street, according to my Internet search. I picked one and called. This time, I got lucky (or so I thought). The pharmacy clerk told me that they had my medication, but the problem was that my prescription had to be rewritten only for the brand name, and not the generic as an option.

Are you still with me? Aargh! I called my local rheumatologist’s office and got hold of one of the nurses who knows me. She readily took care of the new prescription and assured me she would put it under my doc’s nose as soon as he finished with a patient. Twenty minutes later, the pharmacy called back. They had the prescription, but it was still written incorrectly. There could be no mention of the generic on the scrip, only the brand name. Good grief. I called back my doc’s office, got another nurse on the line, who promised to straighten it out and get back to me when all was set, which she did by that evening.

The next day, Thursday, still no text that the scrip had been filled. I was out of pills by now. So I called the pharmacy to see what had happened. A different pharmacy clerk named Cindy answered the phone. I explained my dilemma, trying unsuccessfully not to get agitated. She calmed me down and found all the information. Apparently, they did not have the drug in-house, but she promised to order it right away from the warehouse, and expected delivery the next day. “Call me by noon to check in,” she said in a motherly voice. Thank you, Cindy, for being human.

I didn’t make the call because I got another text on Friday morning, telling me that the scrip was filled. After a client meeting downtown, I double-checked my app. Once again, it was the drug I didn’t want, still waiting for me at the original CVS (even though I had told them I didn’t need it). I called the new store to check on my quest. A different clerk answered and found out the pills were there, but my scrip was not yet filled, so she would ask the pharmacist to move it to the front of his orders.

I drove across town and found the store, a small, old CVS with a tiny parking lot, then waited at the pharmacy counter for another person to finish buying what looked like a dozen bags of pills. But when it was finally my turn, hallelujah, the scrip was filled. Not only that, but the young woman (not Cindy) who served me, who turned out to be the Wednesday clerk on the phone who had said the pills were in stock two days earlier, recognized my name and apologized for her mistake, due to an inventory error (not her fault) in their records. She was so pleasant, so committed to making my experience a positive one, that I might just leave that prescription at this out-of-the-way CVS pharmacy, despite the inconvenient location.

Wild goose chase, indeed. Any flock of Canada geese that had set out for their southern nesting grounds the day I first put in my order were probably long settled somewhere nice and warm by the time I got my pills. Thanks to some thoughtful individuals who believe in old fashioned customer service, I’m a bit warmer, now, 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: Jessica D. Vega

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