Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

stress

Sew It Goes

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I spent the Fourth of July sewing. My project: a midnight-blue knit pencil skirt. It was an easy project, and I finished it Friday morning.

I needed a win. The longer term sewing project I’ve been struggling with for months, a tailored wool blazer, has gone through two pattern tests (muslins or toiles), and though I’m getting closer to the right fit, it will require a third toile that I don’t feel like doing right now. Among other things, it’s just too hot.

So I decided to make something simple. A good strategy. Especially since it took me an hour just to thread my serger, which is old and clunky but still sews a very clean, trimmed and overcast seam, perfect for knits. The skirt is nearly perfect. (Only I know where the mistakes are, and they are minor and don’t show.) It fits well, is comfortable, versatile, and an immediate wardrobe staple.

Another bonus: After I finished, I realized that the project had completely absorbed my attention. An excellent escape from all the stress of our current moment in history. What better way to ground myself than by creating something I enjoy wearing? So, I will be sewing more simple projects this summer, using up some of my decades-old fabric stash as well as a few new fabric purchases. No hand sewing required. I’ve found several great patterns and am looking forward to making them.

And keeping my mind clear and calm.

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.I spent

The More Things Change

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Father’s Day came up suddenly, or so it seemed. When I asked Al last week what he’d like to do, he mentioned a play at a local academy and dinner out. That seemed like a fine plan, as neither of our daughters was in town. But as we took a long walk on Saturday afternoon, I had another idea. “What about Block Island?” This small island off the Rhode Island coast has been a favorite of ours for years and the site of many family vacations when our daughters were young. The weather forecast was good. And so, we went.

The day was picture perfect, and the island a peaceful oasis. As soon as we got on the Point Judith ferry, we both began to relax. Young kids and their watchful dads scurried up and down the deck, so much like our own girls decades ago. And as the familiar New Shoreham waterfront, with its vintage shingled hotels and stores, came into view, I could only smile. Arriving is always like stepping into simpler times and fond memories.

Not everything was the same. We discovered that one of the iconic century-plus-old hotels, the Harborside Inn, had burned down last summer, replaced for now by bicycle rentals. Plans are in the works to rebuild it with a replica that meets new building codes. This is one of the things I love about Block Island—you won’t find McDonald’s or Starbucks here.

We also learned that ferry service had been canceled for several days last September due to high winds and rough seas, stranding some visitors until the boats were able to sail once more. This we heard from one of the dads we’d seen on the ferry, whom we met again as he played with his toddler on the beach. We empathized and shared our own Block Island adventure—our first visit, when our eldest was only three, coincided with Hurricane Bob in August 1991. The eye of the storm passed right over the island, and we spent the day huddled with many others at the only school there. Definitely a memorable trip. It was also memorable because it was the week that I realized I was pregnant with our younger daughter.

So, Block Island holds a fond place in our hearts. We ate at our favorite restaurants, relaxed on the beach, and took a long walk up the shore. We read. Al swam, twice. I sketched. The surf’s sound soothed. No sea glass, this time. But Al had a great Father’s Day, and so did I. Here are some pics from our day. Enjoy!

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.

False Alarm

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I had a routine mammogram a couple of weeks ago. Not my favorite “non-invasive” test, as any woman knows. As the tech was arranging me for the inevitable squash grip of the mammography mammoth, I asked her why she had chosen this particular technical specialty. Her answer: “Because it saves lives.”

Fair enough. Fifteen minutes later, I was glad to be done with it for another year and on my way home.

Or so I thought. A week ago Sunday, I received an email about a new message for me in MyChart, my online portal for medical records and communication with my teams here at home and at Boston Medical. I took a look. No problems in the right breast. Here’s what it said about the left: “Indeterminate calcifications in the upper outer quadrant require additional views. Diagnostic mammogram is recommended for further evaluation.”

Calcium deposits in breast tissue (I learned, from a quick internet search) can be a precurser to breast cancer. A letter in my file indicated that I should set up an appointment for another series of X-rays, adding this supposedly reassuring sentence: “Most such findings are benign (not cancer).” Probably just a nuisance, I concluded. But I wondered, with so much calcinosis in my fingers, could this actually have something to do with my scleroderma? And what would that mean?

As luck would have it, I had a routine appointment with my Boston Medical rheumatologist the next day, so I filled him in and asked what he thought. Was it possible to have calcinosis from scleroderma in breast tissue?  Sure enough, yes, it’s possible. Indeed, it’s possible for calcinosis to show up in all kinds of strange places. He shared a research study with X-rays of some pretty dense (and very uncomfortable-looking) calcification of breast tissue. We talked at length about how to proceed, how to avoid unnecessary diagnostics, and more, and concluded that he would send a referral to Boston Medical’s breast health clinic, which is one of their top specialty clinics, to get me into their queue, just in case.

I went home in a terrible mood. Before I had thought this was probably nothing, but after that conversation, it felt like something more serious. I called the radiology clinic at home and was able to get an appointment for first thing the next morning to do the additional mammograms. I was told that I would get results at the appointment, which I appreciated.

When I got to radiology last Tuesday morning, I told the tech that I have calcinosis from scleroderama. She did not think that would be a likely factor in the results, but I asked her, nonetheless, to tell the radiologist. After three very squished close-up scans of my left breast, I waited in the exam room for the outcome. The radiologist came in and said the words I was hoping to hear: not related to breast cancer. I have “calcification of some small vessels” from scleroderma. Nothing to worry about.

What a relief! When I got home, I wrote my rheumatologist about the results and asked what that meant. Would some calcified small blood vessels lead to eventual tissue death? Was there anything more to understand about this? His answer: “Calcinosis unfortunately remains a mystery.” I can live with that. No sense speculating about it. I’ll find out in due time if it matters or not, and meanwhile, there’s nothing to be done.

So, there you have it. This very strange disease continues to throw some very wild curve balls. But at least this episode wasn’t as scary as it seemed. I write this post for you, Dear Reader. Mammograms do save lives. They can also create uncertainty and may require clarification. In case you get a similar worrisome result from a mammogram, be sure to advocate for yourself and explain your full medical situation. It matters.

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: John Cafazza

“A People’s Contest”

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On this July 4th, I’m looking forward to relaxing and going to an outdoor concert in the evening, a classic way to mark Independence Day. But I’m also thinking about what our country means to me and what’s at stake in these fraught times. So I turned to Abraham Lincoln for some insights.

I share with you here excerpts from his July 4, 1861 Message to Congress, at the outset of the Civil War. He opens with an explanation of his profoundly difficult decision to invoke war powers in response to the Confederate Army’s April 12 assault on Fort Sumter in Charleston Harbor, South Carolina. While much of Lincoln’s message is specific to the details of the war, his thoughts about our republic remain as fresh and insightful as the day he wrote them. Well worth recalling today in our divided nation:

And this issue [the attack on Fort Sumter] embraces more than the fate of these United States. It presents to the whole family of man the question whether a constitutional republic, or democracy—a government of the people by the same people—can or can not maintain its territorial integrity against its own domestic foes. It presents the question whether discontented individuals, too few in numbers to control administration according to organic law in any case, can always, upon the pretenses made in this case, or on any other pretenses, or arbitrarily without any pretense, break up their government, and thus practically put an end to free government upon the earth. It forces us to ask, Is there in all republics this inherent and fatal weakness? Must a government of necessity be too strong for the liberties of its own people, or too weak to maintain its own existence? . . .

This is essentially a people’s contest. On the side of the Union it is a struggle for maintaining in the world that form and substance of government whose leading object is to elevate the condition of men; to lift artificial weights from all shoulders; to clear the paths of laudable pursuit for all; to afford all an unfettered start and a fair chance in the race of life. . . .

Our popular Government has often been called an experiment. Two points in it our people have already settled—the successful establishing and the successful administering of it. One still remains—its successful maintenance against a formidable internal attempt to overthrow it. It is now for them to demonstrate to the world that those who can fairly carry an election can also suppress a rebellion; that ballots are the rightful and peaceful successors of bullets, and that when ballots have fairly and constitutionally [been] decided there can be no successful appeal back to bullets; that there can be no successful appeal except to ballots themselves at succeeding elections. Such will be a great lesson of peace, teaching men that what they can not take by an election neither can they take it by a war; teaching all the folly of being the beginners of a war. . . .

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: Abraham Lincoln photographic portrait by Joseph E. Baker, c 1865; Library of Congress

A Tale of Three Surgeons

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It’s Sunday afternoon as I write, and I am still in Philadelphia. This has not been a pleasure trip. My younger daughter needed emergency surgery last week, and, with her permission, here’s what happened (a long story):

A week ago Friday, my daughter had what was supposed to be a routine procedure at her oral surgeon’s office to extract two impacted wisdom teeth from her lower jaw. We texted in the morning beforehand, and despite a snafu with her planned ride, who had to cancel at the last minute, she was able to get to her appointment and find a substitute to take her home. “I hope that’s the only thing that goes wrong!” she texted. “Me, too!” I answered.

This was not to be. A few hours later I received a text: “Done just waiting for the anesthesia to fully wear off. My jaw is broken on the right so they need to see me on Tuesday or Wednesday but otherwise shouldn’t be too bad.”

To which I responded, “What???”

She couldn’t really tell me much more when I called her, and it was painful to talk because of the jaw fracture. So I called my own periodontist for advice, spoke to one of the nurses who knows me well from all my dental implants, and followed her suggestion to call the oral surgeon, Dr. N, in Philly, with my daughter’s permission, to find out what the hell had happened.

He took my call right away and explained that, indeed, her right jaw had fractured during the procedure and that her jaw would probably need to be wired shut for six to eight weeks. She had an appointment Tuesday with him, and he was working on getting her added to the OR schedule for Wednesday or Thursday at the nearby hospital. He attributed the issue to “soft bones.” Since she has Celiac, this is an actual possibility.

I called my daughter and broke the news, then told her I would fly down on Monday, Memorial Day, and stay with her for the week. She welcomed the idea, given the very upsetting prospect of jaw surgery and complicated nutritional issues for recuperation.

Fast forward to our Tuesday morning meeting with Dr. N. He had encouraged us to write down all our questions and we had a long list. He came into the exam room after a 45-minute wait and told her that she would need to have her jaw stabilized with a metal plate and then wired shut—possibly using elastic bands to keep her jaw closed, but maybe using actual wire to close it permanently during the recovery period. He insisted on giving us worst case scenarios for healing time. He demonstrated how she would have to learn to speak with just her lips because her jaw would not be able to move. He explained how she would be on a liquid diet the entire time.

Let us just say that it was not an upbeat conversation. Again, he said she had soft bones, but never explained beyond that why this happened, just focused on the surgery. He also informed us that he would be handing off the procedure to two of his practice members, Dr. B Sr and Dr. B Jr, who were highly experienced working on trauma jaw repair for children. Since my daughter is very petite and has a small face, this made eminent sense. And we were both just as glad that he would not be involved. He has sterling credentials and also is very experienced with facial trauma surgery, but the Drs B have even more experience.

She was scheduled for surgery the next day, but as an add-on to the OR list, so we were told to get to the hospital by 1:30 p.m. and her procedure was scheduled for 3:00 p.m or later. All this time, I should add, she was holding up remarkably well, given the situation, but in a lot of discomfort because of her jaw fracture and could not eat much.

Once she was prepped in pre-op, I was allowed to sit with her until the procedure started. We waited a long time. Finally, Dr. B Sr came to explain the surgery. And here is the difference between Dr. N and Dr. B Sr. He actually explained, in very understandable terms, with a photocopy of her jaw X-ray, what had happened and why.

My daughter has, like me, large teeth for a small jaw. Her impacted wisdom teeth were large and lodged sideways, so removing them left a big hole in her gums on either side. There’s not much left, now, above her slender jaw bone where the teeth had resided. The right extraction caused the jaw to fracture and move upwards, pinching a nerve.

But the key point here is that she would have been at risk of even more complicated fractures had she not had the extractions done, because she has what is called a ‘glass jaw.’ Some boxers have this issue: if they have impacted wisdom teeth and relatively small jawbones, when hit, their jaws fracture. My daughter was always at risk of a fracture with the wisdom teeth removal, though no one ever told her that. If she had waited any longer for the extraction, her risk would have gone up. It was basically a no-win situation. Dr B. Sr explained that this is an issue for petite people like her. (And it was not a case of soft bones, because she had a bone density scan within the past year and was fine.)

We both were very relieved after we spoke with him. Finally, it all made sense. Dr. N had not screwed up. It was not a fluke. It was just a real risk that, unfortunately, played out. And Dr. B. Sr knew what he was talking about as chief of Maxillofacial surgery at one of the children’s hospitals in Philly. His son is also an expert in the field and on staff at the same hospital.

She was finally wheeled into the OR around 5:00 p.m. Three hours later, the Drs. B came out to meet with me in the waiting area. All went as well as possible. Although the OR team had initially said they had none of the elastic bands we had hoped would be used during the procedure and she’d have to be hard-wired shut, the Drs. B had figured out an alternative, McGyvering a piece of catheter tubing to do the trick. They had to make an incision externally to put in the jaw plate, because her mouth is too small to do it from the inside, but otherwise she was in good shape with an excellent prognosis.

A while later I got to see her in recovery. True to form, even as she was still woozy, she was already in charge, instructing me whom to contact (boss, family, best friends) to give an update, and able to speak understandably, even with her jaw shut tight. As they wheeled her up to her hospital room for overnight observation, I said good night and headed back to her apartment, a half-hour drive away. I was able to find my way and even park in a tight street spot, like a true Philly resident.

Thursday, she came home from the hospital and we began to experiment with making smoothies with all kinds of ingredients, so she could finally eat. On Friday, I drove her to see Dr. B Jr. for a follow-up. Like his father, he was calm, clear, a great listener, and willing to go the extra mile to help her. He swapped out the substitute elastic for the real thing and also told her how to remove and replace the elastics, so that she can take her other medications. He expected to be able to switch her to more stretchable elastics in a few weeks, and he was hopeful that she’d be out of the elastics at four weeks. The metal hardware in her gums that hold the elastics would come out a couple of weeks after that.

As of Sunday, the swelling in her face is nearly gone, she is able to take all her meds in pill form, and she’s been enjoying my creative smoothies. Her favorite is chocolate oat “ice cream” with oat milk and protein powder for an afternoon snack. She can smile and talk without a problem, though it’s tiring after a while. We’ve taken some walks and gone to an art museum. We see Dr. B Jr. again on Monday, and then we’ll drive back to Massachusetts on Tuesday so that she can recuperate with us for a couple of weeks.

This is a long way of saying that so much of going through an experience like this depends on good communications with medical professionals. While neither of us fault Dr. N for the mishap, his personal style was far too blunt and focused on fixing things, not on my daughter as a person in a vulnerable situation who was in pain and scared. The Drs. B had a totally different approach, setting a calm tone, educating, encouraging, and giving us confidence that this would work out. And, thank God, it did.

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.