Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Best Laid Plans

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A week ago Monday, I was on my way home from a two-day philanthropy board meeting in New Jersey, and I had a plan. My German language class meets in Boston on Monday nights, and I didn’t want to miss it, so I had booked roundtrip flights (plus carbon offsets) from Boston to Newark far enough in advance to get a good price (usually, when we meet, I drive to New Haven and take the train). My afternoon flight back to Boston was due in around 3:30, giving me plenty of time to retrieve my car from long-term parking, drive into the city and park, then get some dinner and be at class for 6:15.

As I said, I had a plan. Air traffic in Boston, however, was in no mood to cooperate. Despite good weather, our flight was delayed in Newark by about an hour due to a busy day at Logan. Still, I figured when we landed after 4:00, I had plenty of time to get dinner. The van to the parking lot arrived right away . . . but as soon as we left the airport, we got stuck in traffic. Why? Because the Chelsea drawbridge was open. Maybe twenty minutes passed until we finally got up to the bridge and . . . the gates went down and the bridge began to rise again because another ship was sailing through. Our driver turned around and drove the back route to the lot, earning a round of applause from all of us passengers. Still, this jaunt had now taken as long as my flight.

I got to my car, it turned on (thankfully), and I started to navigate my way into Boston in what was now high rush hour traffic, but WAZE was not really clear on where to turn, so it took a bit of intuition to find my way downtown. By now it was about 5:45, still enough time to park, grab some takeout, and get to class.

However . . . when I finally reached the garage where I’d reserved a space, the entrance was blocked (are you kidding me?) due to construction. A sign said to take three left turns to get to the alternate entrance, but I was pretty frazzled and hungry at this point, it was drizzling and getting dark, one way streets in Boston can be confusing, and I couldn’t find the other entrance, so I ended up parking on the street.

Usually, street parking in Boston uses an app. Not this space. It required putting a credit card in a meter. I tried dipping my card three times, with my fingers getting numb from the cold, but couldn’t grasp the card and retrieve it fast enough. Aargh!!! I stopped a trustworthy-looking young man who was walking by and asked if he could help, which he did, and I was able to pay.

Now it was after 6:00. And I was disoriented. How do I get to class from here? Trying to figure it out from Google Maps took a few false starts, but ultimately, I found the building, got through the reception desk security and up the elevator to our meeting place at WeWorks, which is shared office space. Our class meets in one of the conference rooms, but you need a key to get in (which our instructor has). And, as I scanned the lounge, no classmates were to be found, which meant they’d already gone to the room.

As I was looking to see if I’d missed someone, I took a step . . . and tripped over a stuffed ottoman near a couch. Wham! I landed on hands and especially on my right knee. It hurt. A lot. A fellow sitting nearby asked if I was okay (“No!” I cried) and helped me up. I could still walk, fortunately, and a woman who was cleaning the kitchen area let me into the locked section of the office space. She also, at my request, kindly filled a bag of ice, which I used to reduce swelling in my knee for the next couple of hours.

No way I was going to skip class after overcoming all those obstacles! But I did leave an hour early, because I was quite hungry, tired, and still had an hour’s drive home. Al met me with a big hug and bowl of warm soup, which was exactly what I needed.

A week later, my right knee remains a bit black-and-blue and is not quite back to normal. If I continue having issues later this week, I’ll go for an X-ray to be sure I didn’t do anything other than sprain it. The rest of my fall-related aches and pains have resolved. Most importantly, I did not hurt my hands. This is the real miracle of the whole episode.

The older I get, the more the idea of falling scares me. If I can find any silver lining in this escapade, it’s the fact that my hands are unharmed, and I don’t seem to have broken anything. I didn’t give up and still attended most of the class. It was an important reminder to be mindful of where I’m stepping. And my husband gives the best hugs in the world.

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: Alexander Schimmeck

Trousers Rolled

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My grandmother, who was a stylish woman into her 90s, did not like growing old. “These aren’t the golden years,” she’d say. “They’re copper.”

Now that I’m 65, I have a lot more empathy for her sentiments. I don’t feel old, and I don’t think she ever did, either. But our bodies have a way of refuting that belief. All the more so with a disease like scleroderma.

I was in my late twenties when I first began to experience mysterious symptoms of arthralgia and swollen fingers, plus Raynaud’s and fatigue. When I was diagnosed in my early thirties, I quickly realized that what should have been a decade of coming into my own was, instead, a time of aging prematurely. My friends all had kids, already. Everyone else was full of energy and plans for the future. By contrast, Al and I were struggling with infertility, and I was always cold, achey, tired, stiff, losing the use of my hands, watching my face become more narrow and tight, and constantly experiencing strange symptoms, like painful breathing that turned out to be a bout of pleurisy.

It was hard to share with anyone but Al. I didn’t like going to the local scleroderma support group, because the vibe was all about how bad everyone felt. My doctors were supportive and knowledgeable, and physician friends provided some comfort. But, basically, I just kept my feelings to myself.

As my health began to improve (due to Penicillamine, which has since been discredited in the medical literature as a treatment for scleroderma, due to small research sample sizes, but which I believe saved my life), and our two wonderful daughters arrived—one by adoption and the other, by birth—I regained some dexterity and most of my energy. I went on to have a very full and active life. Thankfully, I still do.

But I also was always aware that my body was still aging faster than most of my peers’. Now that we’re all in our ’60s and early ’70s, however, that comparative trajectory has evened out. Our bodies fail, one way or another, at some point or another. All those years of dealing with limitations have given me one strange advantage—I’ve been managing with less for so long, that the inevitable losses of dexterity, mobility, and energy, as well as accompanying discomforts, just aren’t that upsetting. They’re simply familiar.

Not that I would wish scleroderma or any other long-term chronic illness on anyone at a young age—or any age, for that matter. But learning to cope with physical limits over decades has certainly made this transition somewhat easier. Or, perhaps, more silver than copper.

P.S. If you’re wondering about the title for this post, it’s drawn from The Love Song of J. Alfred Prufrock, by T.S.Eliot, a poem that takes on new depth for me with each passing year.

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: Pineapple Supply Co.

Best Stress Antidote

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With all the turmoil in our nation and the world, I’ve been feeling a bit overwhelmed this past week. So it’s worth the time to pause and just take stock of what is going well. Even living with scleroderma, I actually feel relatively healthy and have a lot to be grateful for:

  • Since I had my hand surgery two years ago this fall, I have had minimal digital ulcers. Most of the time, I just have bandages on both thumbs, due to all the calcium deposits in each. But that’s it. Pretty amazing after so many years of multiple ulcers. My hand surgeon essentially removed all the tissue that had the worst circulation. Even if my hands look odd, what’s left is pretty healthy.
  • Despite all the hassles of switching to Medicare, especially Part D drug co-pays, a significant portion of my health expenses are still covered—and I have a good, affordable Medex Plan that includes my long-time team of doctors.
  • Although my lead rheumatologist recently told me he is retiring this February, he has been mentoring a replacement. It will be an adjustment, but I won’t have to go searching for someone knowledgeable or have to worry about a long wait for getting into a new practice.
  • We have the resources to pay for complications like my tooth extraction and implant, as well as for routine medical care.
  • I have energy and strength to lead an active life, run my own consulting practice, take hikes, participate in exercise classes, and keep up my daily routine.
  • I live in a time and place where there are excellent medical professionals who understand this complicated disease, who take me seriously, and who give me good advice that I can trust.
  • Because I work for myself, I can set my own schedule. On days when I’m more tired, I can cut back. On days when I have more energy, I can do more projects. It evens out over the long run, and I always hit my deadlines.
  • It’s fall. The days are getting shorter and colder. But my house is warm, and my husband never complains about setting the thermostat for my needs.
  • Even as my dexterity is limited, I can still cook a gourmet meal for company, weave beautiful textiles, sew a garment, draw, write.
  • I have the loving support of my daughters, other family, and friends. Most especially, I have Al, who has never babied me with this disease, but always given me the care and encouragement that I’ve needed, when I’ve needed it.

Okay, now I feel better. Those are my top ten. How about yours?

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: Ricardo Gomez

Mediterranean Musings

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No doubt about it. The weather here in New England is getting colder. My blue fingers bear witness to fall, even as the trees are only just turning.

Sigh. I keep thinking of our wonderful vacation this summer in Greece, and especially our days on Crete. Hot and sunny days, jumping waves in the ocean—and some of the best food I have ever eaten. Well, I can’t fly back to Crete anytime soon, much as I would like, but I can replicate the flavors of that stunning island.

So, for Rosh Hashanah last week, I used a cookbook of Crete cuisine for our holiday meal. Among the dishes were homemade stuffed grape leaves, something I never would have thought of making before. Fortunately, our younger daughter was home for the weekend, and her very nimble fingers came in quite handy for rolling several dozen of the appetizers.

The recipe is actually quite simple. The filling is a combination of rice, lemon juice, olive oil, mint, dill, and onion; you can buy grape leaves by the jar and save the step of prepping them. Lots of recipes out there. The one we followed needed some adjustment in proportions and used uncooked rice (which cooks after the leaves are stuffed), but I’ve seen other recipes that use cooked or partially-cooked rice. Once you make the filling, you wrap a spoonful in each grape leaf, kind of like a mini-burrito. Then they all go in the bottom of a large pot, covered with water and a plate to keep them from floating. Twenty minutes later, they’re done. And delicious, much softer, more subtly flavored than the store-bought kind.

I was actually able to wrap one myself, despite wearing annoying latex gloves (an essential so I don’t infect my fingers while cooking), with floppy fingers that are longer than my partially amputated tips. But I’m going to try it again on my own sometime, because I want to see if I can really do it, and they make a great lunch. I still have a few left from last week, and they keep well in the fridge.

Best of all, when I eat stuffed grape leaves (with kalamata olives, of course, a perennial favorite of mine), I can better remember the blue Mediterranean skies and warm waves, the pleasure of a hot-but-not-too-hot day, our wonderful B&B hosts, and the joy of savoring every moment. That’s the best antidote to fall’s onset that I can think of.

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.

Dispatch from Medicare Part D

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I’m posting on Wednesday, a day late (hopefully, not a dollar short), because Monday and Tuesday were Rosh Hashanah, and in the run-up to the Jewish New Year and a lot of cooking for company, I ran out of time to write a post for my normal Tuesday morning blog schedule. In the midst of all that, however, I was also in the midst of a struggle with my Medicare Part D insurance company about a medication I’ve been on for decades. Fortunately, it has a happy ending, but it’s also a case study in the need to be your own health care advocate . . .

For decades, I’ve been taking Evoxac (generic name is Cevimeline) to help me compensate for dry mouth due to Sjogren’s Syndrome, a not-uncommon autoimmune companion to scleroderma. This has always been routinely covered by any employer-based health insurance plan, usually for about a $10 co-pay for 90 pills. Under our previous coverage, I’d received bulk orders, but my supply and refills had finally run out. When I saw my rheumatologist at Boston Medical a couple of Fridays ago, I asked him to call in a prescription to the Walgreens I now use under my new Medicare Part D plan.

Within an hour, I received a text that the pharmacy was out of stock for that med, but would order a supply for me. Fine. I still had enough pills for several days. By Tuesday, however, I’d not received any word about the prescription’s status, so I called Walgreens. Lo and behold, the problem wasn’t just a matter of inventory; my Cigna plan had turned down the request because Cevimeline is not in their formulary. If I wanted to fill it without coverage, the price tag was over $500.

What??? First of all, why hadn’t I received a text about the rejected coverage? And more importantly, when I surveyed Part D plans last spring, I had reviewed all my meds, and this one was definitely on the list of covered drugs. I know formularies can be changed without notice, one of the more outrageous issues with our health care system, but it had never happened to me before. My next step was to research Cevimeline via Canada, at a more affordable price. Not available, to my dismay.

So I called Cigna. Now, I must admit, the customer service people were polite and very helpful. Not what I expected. I was forwarded to their coverage unit and learned I needed to apply for a coverage appeal. It would take 72 hours, once they received documentation from my rheumatologist that I needed this medication. But, wait, I explained, I now have no pills left. So the service rep put my request on 24 hour turnaround. So far, so good.

Next step: Follow up with my doc’s office to be sure they sent the needed info ASAP. Forget messaging through MyChart. That would take too long. So I called. But here’s where new systems of consolidated call centers at health care providers comes into play. Although I was able to confirm that Cigna had faxed their info request, I could not get through to my doctor or the nurse I know who handles refills and pre-authorization requests. I simply could not get past the gatekeeper customer service rep at Boston Medical. He was pleasant enough, but had no power to do anything other than try to reach the nurse and, when she didn’t answer, leave a message and put a note in my electronic file that I was out of pills.

This was not going to suffice. No point arguing with him. Instead, as soon as I hung up, I emailed my rheumatologist directly (I’ve had his email for years) and the nurse (who has always helped me in the past), explained the situation, and waited for a response. By late that afternoon, the nurse responded that she’d called Cigna and my case was “in process.” Great, I thought.

But no word from Walgreens by the next day. So I called Cigna again Wednesday morning. Sure enough, case “in process” meant they had just sent the info request, but not heard back from Boston Medical. So I emailed the nurse again with what I’d learned. She got on the phone within hours and sent them what they needed. Thursday morning, first thing, I received a call from Cigna that the prescription had been approved.

Now the question remained: how much would this cost? The other part of my dilemma with Part D now is that I have landed in the infamous “donut hole,” which essentially means I’ve exhausted my insurance’s more generous contribution to my meds and now must pay about 25 percent of the cost, which is a lot with most of my meds, until I pay something like $5,000 out-of-pocket. Turns out the high price I was quoted by Walgreens was for a three-month supply. With the approval, the cost was significantly reduced, but there was a confusing price range.

So on Friday, I went to Walgreens, to be sure that the prescription would go through, and to find out the cost. It did go through, thank goodness. First cost I was quoted: about $150. Was this for one or three months? Three months. Okay, so how much for one month? Just under $30. Hmmm. There’s a big math error somewhere, but the under $30 price suited me fine. Again, they were out of stock. As of Monday afternoon, I got a text that my prescription was filled and ready for pick-up. And that’s just what I’m going to do after I finish this post.

Moral of the story: Never let an outrageous drug price quote stop you from advocating for what you need. And be sure to get private emails from your trusted health care providers. (As a side note, after I ran into a similar call center roadblock with reaching my cardiologist a few months ago, I told him about it at my last appointment, and he gave me his personal secretary’s contact info.) Persistence pays.

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: Mathew Schwartz