Living with Scleroderma

Refreshment Break

Evelyn Herwitz · October 16, 2018 · 2 Comments

I made myself take a walk Monday afternoon. It was short, just around the block, but I got outside. It feels like fall, now, damp, chilly, and I need to get acclimated to the change in seasons. I’m back in sweaters and warm pants and thick socks, my long coat, hat. I wore mittens over the weekend.

It’s all too easy to make excuses to myself to stay inside when the weather turns. It’s too overcast. It might rain. It looks dreary. I don’t want my fingers and face to get numb.

So my short walk was a good reality check, as well as a much needed breath of fresh air. Even as it was overcast and had been pouring earlier in the day, the rain held off. The air smelled sweet with the tang of humus. My joints limbered up. My mind brightened from a jolt of oxygenated blood.

It was also good to see the neighborhood beyond my computer screen. Trees are turning late this season in Massachusetts, due to a warmer-than-normal summer and early fall. Usually we’re at peak foliage right around Columbus Day weekend, but this year green still predominates. Only the sugar maples, so far, have begun to flame and shed their leaves.

Pumpkins, plastic tombstones, skeletons and fake cobwebs decorate a few neighbor’s lawns, but the Halloween craze of a few years back seems to have ebbed. That’s fine with me. More than ghosts and goblins, there are quite a few red, white and blue signs promoting political candidates for the upcoming November election. That’s fine with me, too.

A new neighbor’s house has been repainted; that neighbor’s repairs are complete; another’s is in progress, with boards hammered over the front door. Al decorated our front steps with mums, pumpkins, gourds and cornstalks over the weekend, and I’m pleased with the result as I walk up our drive.

Back inside, I realize my fingers and lips have gone slightly numb. But it’s warm in the house, and I feel refreshed. Worth repeating.

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.

What Matters

Evelyn Herwitz · October 9, 2018 · Leave a Comment

This morning, as I was changing the bandages on my fingers, I realized that I had forgotten to write my blog. I kept thinking yesterday was Sunday, because of the Monday holiday. So this post is arriving a bit late on Tuesday.

It’s easy to lose track of time when you’re busy and immersed in multiple projects, work, social activities, family. So consider this a public service announcement. Four weeks from today are the mid-term elections. There is a great deal at stake in our country. Health care insurance reform is at the top of the list.

In particular, there is litigation currently under review in the federal district court of the Northern District of Texas, Texas v United States, brought by 20 Republican attorneys general and two private citizens, that seeks to declare the Affordable Care Act unconstitutional. According to this excellent summary on the Health Affairs website, the plaintiffs are arguing to “enjoin HHS and the Internal Revenue Service (IRS) from enforcing the ACA and its implementing regulations—or, at a minimum, to strike down the law’s guaranteed issue and community rating provisions alongside the mandate.”

The Department of Justice has declined to defend the constitutionality of the ACA’s provisions in the Texas case, including the ban on discriminating against people with pre-existing conditions. In response to the possibility of the judge ruling in favor of the plaintiffs, a bill and a resolution are pending in the U.S. Senate that would counter some of the fallout.

The bill, sponsored by 10 Republican senators, would amend HIPAA to restore two of four provisions that might be struck down by the Texas ruling (which has not yet been issued). Here is how Health Affairs explains it:

The legislation introduced by Republican Senators would restore only two of the four provisions that stand to be invalidated in Texas: 42 U.S.C. § 300gg-1 (guaranteed issue) and most of § 300gg-4 (guaranteed issue and rating based on health status). So the bill would prohibit the denial of coverage and rating based on health status, but it would not prohibit preexisting condition exclusions or rating based on other factors, such as age, gender, tobacco use, or occupation. This means that many individuals, including those with preexisting conditions, could still face higher premiums, higher out-of-pocket costs, and the denial of benefits because of a preexisting condition even after paying premiums for many months.

The Democrat’s resolution, in turn, would do the following (again, quoting from Health Affairs):

In July, Democratic Senators led by Joe Manchin (WV) introduced a resolution with the goal of intervening in Texas to defend the ACA’s protections for people with preexisting conditions. The resolution would authorize the Senate Legal Counsel to move to intervene in the case on behalf of the Senate and defend the ACA. During last week’s debate over an HHS appropriations bill, Senate leadership blocked a vote on the amendment.

For those of us with pre-existing conditions and expensive medical care, this case is important. Continuing efforts to remove protections for people with serious illnesses are literally a matter of life and death. Participation in our democracy can never be taken for granted.

Whatever side of the issue you’re on, this is essential: mid-term elections matter as much as presidential elections. Who represents you in Congress is as important as who serves as President. Whom you elect as your state’s Attorney General matters as much as who serves in your state and local government. Note the word “serves.” If you are already registered to vote, please participate on November 6. And if you have not yet registered, depending on where you live, there may still be time. You’ll find all the details here, at USA.gov’s voter registration page.

Image Credit: Anthony Garand

Progress Report

Evelyn Herwitz · October 2, 2018 · 4 Comments

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.

Just Breathe

Evelyn Herwitz · September 25, 2018 · 2 Comments

This past Friday morning, I had double-header appointments at Boston Medical, an echocardiogram followed by a routine appointment with my wonderful rheumatologist, who has been my specialist for at least two decades, now.

My last echocardiogram was done a couple of years ago, one of those tests I have to repeat occasionally to monitor signs of pulmonary arterial hypertension (PAH), a late-stage complication of scleroderma. The only symptom, so far, is extreme shortness of breath if I commence intense aerobic exercising without a serious warm-up. We’ve been watching this for years, now, and I’m on prophylactic medication that seems to be protecting me from worse complications.

Most of the time, the test doesn’t bother me. It’s non-invasive, and, depending on the tech, just mildly uncomfortable. Like I said, depending on the tech. This time, let us say, it was more challenging.

First, the easy part. You lie down on your left side, with your head on a pillow. The lights are dimmed so the tech can see the computer screen more clearly. A transducer, which looks like a short, hand-held rod with a gel-covered rolling ball on top, is pressed against your ribcage, neck and diaphragm, to send high frequency sound waves through your chest wall. It’s like an ultrasound for your heart. The sound waves bounce back to the computer, which translates them into moving pictures of your heart muscle. Occasionally, the tech will turn on the audio, and you can hear your heart beating away, kind of a squishy, pumping sound that seems to reverberate from a deep well.

Now for the hard part. You have to hold your breath during certain parts of the test, so that your diaphragm doesn’t cause your heart to move around and your lungs aren’t so full that they interfere with the heart imagery. I’ve never had an issue with this in the past, but my tech on Friday had a very specific way that he wanted me to empty my lungs, first, and then take in only a small sip of air. Then hold. And hold. And hold. While he pressed really hard with the transducer on my ribcage. I have no padding there. It hurt. And I couldn’t wave my hand or ask, “Can I breathe now?”

I really started to wonder, at a few points, if I would actually be able to hold my breath long enough. Fortunately, each time, just as I thought I wouldn’t make it, he said I could breathe again. It was also reassuring to hear my heart beating when I felt like my lungs would burst. “You’re doing great,” he said. I guess so. Test results will be available this week.

By the end of the half-hour, I was very glad to get dressed and head over to the Rheumatology Department. The sun was bright, the air crisp. As I caught up with my rheumatologist, who, like me, is in his sixties, we chatted briefly about retirement. To my relief, he has no plans of retiring anytime soon. This time, I needed no permission to breathe.

Image Credit: Eric Witsoe

Back Home

Evelyn Herwitz · September 18, 2018 · 2 Comments

Home from our summer travels for about a week-and-a-half, but already it seems like a long time ago that we were away. That’s the strange thing about vacations. You’re completely immersed in your environs while you’re there, but once you’re back, it’s almost as if you never left.

Which is why I keep a travel journal, and we take plenty of pictures (especially my dear husband). If a tourist walks in a city and leaves without a record, was she really there?

Yes, I was, with Al—in Prague, Bratislava, Vienna and Berlin. Sixteen days, four countries, a crash course in European history, spectacular scenery, wonderful art. This trip was also personal: the bookends of our itinerary were designed to honor the memory of my great grandparents, who were murdered in Eastern Europe during the Holocaust.

My mother’s father, a professor of engineering at the Technische Universität Berlin, saw the writing on the wall in 1935 when he lost his position because he was Jewish. In 1936, after five months of searching for work in the U.S., he was able to find a good job and make a new home for my grandmother and mother. But, despite a heroic effort, he was unable to convince his elderly parents, who loved their homeland, that they should emigrate, as well, until it was far too late for them to escape the Nazis. They were transported to what is now called Terezín, a concentration camp about an hour’s drive from Prague, in August of 1942, and died there in early winter of 1943.

No one in my family has ever gone to Terezín. So, with a private tour guide, we visited the camp and learned details of my great grandparents’ final months. We lit candles in their memory. Later, at the end of our journey, we joined friends in Berlin for the placement of two Stolpersteine, or “stumbling stones,” which are memorial cobblestones placed in the sidewalk next to the home where victims of the Shoah last lived of their own free will. These were powerful experiences for me, which I am only beginning to process and understand. It is one thing to know the history of World War II in the abstract, and quite another to confront such horrors in the lives of your own family.

We enjoyed uplifting experiences, as well: fairytale scenery in Prague, a day trip to Slovakia’s High Tatras amidst the Carpathian Mountains; a visit to a medieval silver mining town, also in Slovakia, one of several UNESCO World Heritage sites that we saw during our travels; extraordinary artwork by two of my favorite painters, Egon Schiele and Paul Klee, in Vienna and Berlin. And, oh, yes, some very delicious food. My hands held up, my feet wore out, but I’m so grateful that we were able to honor my great grandparents’ memory and have another overseas adventure, whatever the challenges—physical and emotional.

Here are a few highlights:

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