Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Art in the Park

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What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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.

Case Management

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I rarely cancel doctor’s appointments, even when I don’t feel like going. But I did that on Monday.

I was supposed to see my Boston Medical pulmonologist, the one who specializes in pulmonary hypertension, for a late afternoon appointment. This was a routine follow-up from February.

However, on Friday I had just driven into Boston for a midday appointment with my cardiologist, also a routine follow-up, this time from January. And since he has been my go-to for diagnosing my Type 2 pulmonary hypertension, and, thank goodness, the medication he put me on is working well, I just didn’t see the point of the Monday appointment. Why drive an hour-plus each way to wait and wait for a 15 minute appointment where I will tell the same story of my status and get the same (welcome, but not needed) reassurance from her that I’m doing okay, no changes needed? Especially if she can just read his notes in my chart.

This is not to say that I don’t value the pulmonologist’s time and advice. It’s just the schedule made the whole thing seem redundant. And Boston traffic during rush hour is no picnic.

I tried several times last week and again Monday morning to see if I could at least switch the appointment to telemedicine, but now that the pandemic is in the rear view mirror (thank God), that option is no longer readily available. So I rescheduled for September at a more reasonable time of day.

There are always stretches of multiple medical appointments in my calendar. Sometimes they are well-spaced, and sometimes they clump together, as they have recently. I still have another Boston Medical appointment for Thursday with my rheumatologist. Cutting out one more commute this week is the best way for me to conserve my energy while managing my own case. And to stay sane.

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: Sunguk Kim

And She Persisted

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It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao

Side Effects

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Last Tuesday afternoon, I got my second shingles vaccination. My first Shingrix shot, back in February, gave me a sore arm with a rash that lasted more than a week. But it was otherwise unremarkable. This time, however, was different.

By bedtime, my arm was achy, per usual after a vaccination. But I had trouble sleeping, waking several times with sore joints and unable to find a comfortable position. In the morning, I was so cold that my teeth were chattering. Very strange sensation. Could not stop until I managed to warm up under sweaters and blankets. For the rest of the day, I was draggy and achy, felt faint a few times, and basically had to lie down a lot. Over-the-counter pain meds helped somewhat. By Thursday I began to perk up, though by afternoon, I started to fade again. It wasn’t until Friday that I felt more like myself.

Annoying as this was (I haven’t felt that crummy in a long time), it was certainly better than getting shingles. I actually had shingles once, a few years ago, but was fortunate enough to ask my PCP about what I thought was a spider bite at a routine check-up. He recognized it as shingles and put me on a week’s course of antiviral medication, which worked very well. I never experienced the debilitating nerve pain from the virus, thank goodness, but I know others who have, and it is no picnic.

Because I’d had shingles, however, I had a long conversation with my Boston Medical rheumatologist about whether the data about the vaccine’s effectiveness actually applied to me, since the research was based only on people who had never had shingles. At that time, he agreed that it was unnecessary. But the vaccine and research have evolved since then, and now my team of docs all recommended getting vaccinated.

I write this not to discourage anyone from getting vaccinated for shingles—just to alert you that the second dose can pack a wallop. Even the pharmacist told me before I received my shot that I might experience “flu-like” symptoms. So give yourself downtime after the shot, in case you have a reaction. And be sure to discuss with your medical team whether a shingles vaccination is appropriate for your personal health needs and any side effects that should be weighed against benefits for your particular situation.

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: Gratisography

Things Get More Complicated

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As I write on Sunday afternoon, I am once again back in Philadelphia—where it has been mostly, but not always sunny, due to wildfire haze from Canada. Our younger daughter is on the mend, but not without a major complication last week, after we drove back to Massachusetts, which made all too clear the weaknesses in our nation’s health care system.

Last Tuesday morning, when my daughter got up, she noticed that the right side of her jaw was more swollen than it had been when we saw Dr. B Jr the day before. We assumed it was just part of the natural healing process, post surgery, as we’d been told that there is often more discomfort several days out from the procedure. I had not slept well that night, anticipating the six-hour drive ahead, but had eked out just enough rest to go. She really wanted to get back home. So, we left.

A good mix of ’70s road trip music buoyed our spirits, and we took several breaks along the way for me to eat and her to drink the protein shakes I’d made in advance and transported in a cooler. We arrived safely but exhausted, around 7:30 that evening. By this time, her jaw looked more swollen, but it was too late and we were both too tired to get to urgent care to have it evaluated. Our working hypothesis was that the steri-strips over her incision were inflaming her skin.

The next morning, she called Dr. B Jr, who would have seen her if we were still in Philly, but advised her to restart antibiotics, and if there was no improvement, to get back to Philly on Thursday for an exam. He also said to go ahead and remove the steri-strips and the superficial suture in her neck, as he’d explained at our Monday visit.

We both slept well. By Wednesday evening, she was rested and in good spirits as we were having supper together, when, all of a sudden, I noticed what I thought was a loose scab at the end of her incision. Within seconds, it morphed into a gushing stream of putrid brown goo pouring from her neck. I tried to help her stanch the flow, but there was no stopping it, even with a towel pressed to her neck. With Al giving directions, I raced her to the ER, which fortunately  took only 10 minutes.

Because she was triaged as having a neck injury, she got a bed right away and priority attention. But here is where the downside of American health care comes into play. It turns out that there is no oral surgeon on staff at our hospital, nor at the other major trauma center in our city. Nor is there any oral surgeon at any of the hospitals in the greater Boston area, with the exception of Tufts in Boston, which has a dental teaching program. Because our hospital could only treat immediate symptoms but not fully evaluate her, the plan was to drain as much as possible from the infected abscess in her neck, infuse her with strong antibiotics, do a CT scan to determine how far the abscess had traveled internally, and then transport her by ambulance to Tufts, if they would accept her.

All of this seemed extreme to me. Why would she need to be transported an hour away and admitted to Tufts for this episode? Why couldn’t we just stabilize her that night and then drive back to Philly the next day, to continue care by her surgeons? The ER docs explained that if anything went wrong on the drive, and we thought the doctors had said it was okay, then there would be a problem (e.g., they could be sued for malpractice, though that wasn’t explicitly stated).

I was also worried about her insurance, because she was out-of-network for her coverage. While we waited for her to come back from the CT scan, I asked if they had any idea how much this was already costing. On top of the ER visit, an ambulance transfer to Boston plus a second hospital intake, plus a potential hospital admission and maybe a procedure would have easily run into high five or even six figures, with no way to know how much she would be billed after the fact. Of course, if she was at great risk, we would have done whatever was needed. But was it really necessary? The person who handled billing said that they had run her insurance through their system, but because she was out-of-network, they couldn’t see what the insurance would cover. “They’ll pick and choose,” was all she could say. Not reassuring.

Around midnight, the CT scan results came back. Her neck was mostly clear, though there was some slight residual of the abscess. Her second IV drip needed to finish, and the ER team needed to assess options. As we waited, I noticed that her face was turning pinkish red. She was getting vancomycin, a powerful antibiotic which can cause a rash (a detail I’d learned years ago when I was constantly getting digital ulcer infections that required IVs), so I asked her nurse to check her. Sure enough, the IV pump rate was too fast, so she slowed it down with the doc’s input. Would anyone have noticed, I wondered, if I hadn’t been by her side?

By about 2:00 a.m., her ER doc came back to visit. They had contacted Tufts, but given that our daughter’s case was not deemed life threatening (thank goodness, but again, then why the extreme plan?), they would not admit her because of her out-of-state insurance. The ER doc had also consulted with the covering oral surgeon in Philly, who agreed that my original suggestion to drive her back later in the day made perfect sense. To her credit, the doc kept our daughter in her ER room for observation until shift change at 7:00 a.m. and sent Al and me back home to sleep.

I got about three hours after working off the adrenaline rush by doing some laundry and cleaning up the kitchen. Al picked her up on time from the hospital, and our daughter called Dr. B Sr to fill him in. He agreed that she was safe to travel and had no concerns about the plan. Since he’d already given her his cell number, he said we could contact him anytime on the way back to Philly, and he would check in that afternoon. Such a mensch. We felt very reassured, and after I rested a bit more, we set out around 2:00 p.m.

Now, of course, there is another layer of complication to this saga: When I tried to help stanch the flow of putrid pus from our daughter’s neck Wednesday night, I did not think to put on rubber gloves, and soiled the bandages on my thumbs. During the long wait at the ER, I went back home to change my bandages and start minocycline, which I always have on hand. If things got worse, I figured I could call my new ID specialist (my long-time specialist retired last year), whom I had fortunately met recently.

A few hours into the drive, my left thumb, which has a very persistent ulcer, began to buzz. Not a good sign. Just past the halfway point, as we got onto the Garden State Parkway in New Jersey, it was starting to smart. I could tell it was swelling, I was at risk for a lot of pain with a spreading infection, and it was now past 5:00 p.m. My daughter was feeling well enough to take the wheel, and I called my ID specialist’s office. Thank goodness, he was on call that evening. Over the next couple of hours, with the help of his excellent answering service, I was able to get through to him, get a prescription for a broader spectrum antibiotic, and figure out that it could be filled at the CVS near my daughter’s apartment, which would be open until 9:00 p.m. Our ETA was 8:15 p.m.

We made it. Because my Medex insurance is from Massachusetts, the prescription was not covered, but the wonderful pharmacist found a coupon to bring the out-of-pocket expense down from $75 to $22. Our daughter’s kind neighbors helped us lug all our stuff up to her apartment, and she found a good parking space. We slept soundly.

The next day, we met with Dr. B Sr and Dr. N. They reviewed all the notes and CD with part of the CT scan from the ER visit, talked at length with us, and determined that she needed a combination of antibiotics to fight back what was left of the infection. Her two jaw plates were in tact, with no sign of infection around all nine screws holding them in place (infections can dissolve bone, causing the screws to loosen, requiring more surgery). More follow-up was scheduled for Monday morning. And they knew all about the shortage of oral surgeons in our region, because there is a shortage of oral surgeons nationwide, though a concentration in the Delaware Valley, where one of the major training programs is based. She had both of their cell numbers and was encouraged to call anytime she needed help.

And so, on Sunday evening, she is doing better, thank God. The swelling has significantly receded. Dr. B Sr immediately responded to a few issues over the weekend. My plan, if all is clear after her Monday appointment, is to take the train from Philly back home on Tuesday.

But we are left with many questions: Why is our health care system so disjointed? Why should our daughter be rejected from a hospital because she lacks in-state insurance? Why is the obvious treatment plan initially rejected because physicians are more concerned about malpractice suits that what actually makes sense? Why isn’t there a better way to distribute medical specialties nationwide? Why should an antibiotic that would cost a few dollars in Massachusetts cost $75 across state lines?

Quality health care should be a right, not dependent on income or privilege or geographic location. None of this is new. But it really hit home for me this past week. I am exceedingly grateful for all the good care that our daughter has received. It just shouldn’t be this hard or confusing to get it.

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.