Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

Summer’s Gift

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There are a lot of reasons to complain about the heat this summer—too much, too humid, too risky. But there is also one big blessing for me: my finger ulcers are healing.

In particular, the left ring finger ulcer that I’ve been nursing since January through a lost nail and several rounds of antibiotics is much improved. A few visits to our hospital’s wound clinic were extremely helpful, especially learning the benefits of a special petroleum-jelly-infused gauze, typically used for burns, that has made a huge difference in managing the moisture level of the ulcer.

Keeping my ulcers moist but not too moist is always the key—and the trickiest part of this process. If the ulcer is not moist enough under the dressing, the skin tightens and becomes quite painful. But if it is too moist, the skin breaks down even further, takes longer to heal, and invites infections.

I also discovered that when my skin is extremely irritated, plain petroleum jelly is better than Aquafor, which has been my go-to ointment for decades. It contains lanolin alcohol, which can cause me issues. I confirmed this with wound clinic staff, and they said it’s not an uncommon reaction.

Another very useful medication that I received from the wound clinic is a steroid ointment, Triamcinolone Acetonide 0.5% (requires a prescription). This can only be used for seven days at a stretch, then you have to take a break. But it really calms inflamed skin.

I change my bandages twice daily, using whatever combination of dressings is most appropriate for that particular ulcer, a process that takes about a half-hour at present. Atop any ointment I place a small piece of very soft gauze, then anchor it with breathable fabric bandages. Right now, I’m down to four bandaged fingers during the day and three at night (one needs extra protection from typing).

My right thumb is my current problem child, with calcium bits beneath the surface, so I’ll bring that issue to the wound clinic this week when I review my situation. I also need advice for how to ween the left ring finger from dressings so the nail can (maybe) grow back.

I’ll never be free of my bandages. I’ve come to accept that fact. But I’m grateful, as always, for access to excellent medical care. And glad, even when it’s too hot, even for me, that summer is here, for now.

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.

Sew-sew

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I’ve had some sewing projects in mind for months—in particular, a dress that I sewed up last summer in a test fabric that I liked so much, I’ve been wearing it on hot days. It would look lovely and feel great in a very soft purple cotton blend that I’ve had in my fabric stash for, literally, decades.

So, with my digital ulcers doing better (summer bonus), though still bandaged, on July 4th I took the afternoon to cut out the pattern pieces. (I use a rotary blade for precision and ease of handling.) In so doing, I realized this would be a tricky project, because the fabric is so soft that it slips and stretches if I’m not careful.

Yesterday it was quite hot outside, in the 90s, so I had to put on the A/C. We have heat pumps that double as air conditioners, and they blow cooled air. Very effective, but with my Sjogren’s, they also dry my eyes even more than normal. But I had the time to start sewing, and I set to work.

It took me about a half hour to thread my serger, and more time to diagnose an issue with my sewing machine, which kept jamming until I realized that the thread had jumped one of the guide loops. The first dart sewed up perfectly. The second slipped despite pinning it in place (a challenge with bandaged fingers) and I had to remove stitches and redo it twice more. But I was not discouraged.

Four more seams on the serger sewed up nicely. I pressed everything carefully and moved on to the next step, a bias-bound neckline. And here’s where I ran into trouble.

When I made the test version, on more stable cotton, I was able to easily manipulate the material and sew it perfectly. But this fabric was a whole other animal. Using the same approach as last time was, simply put, a mess. I couldn’t control the fabric, my stitching was uneven, and I quit two-thirds of the way through the process because I realized it would not work.

Part of the problem was my hands—I could not feel the fabric through bandages in order to guide it in place. And part of the problem was my eyes—so dried from the A/C that my vision was blurring. Even using a small focused light wasn’t enough help.

So, with some difficulty I pulled out the stitches and put the project down. I have an idea of how to fix it, and enough left-over fabric, if needed. But if there’s one thing I’ve learned over the years, it’s to stop when I’m frustrated, set the problem aside, and give myself time to rethink my approach. It’s really hot again for the next couple of days, so I’ll need to take both my very dry eyes and my hands into account.

But I will finish the dress.

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.

Rough Patch

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So, what I thought was “just” allergies last week turned out to be more complicated. When our geriatrics nurse practitioner came to our home for a check-up last week, she carefully listened to my lungs and informed me that I had not developed bronchitis, as I’d thought. No, I had pneumonia.

What? That was not on my bingo card. Glad she caught it before it got even worse. I started antibiotics that afternoon, and within a few days I was starting to feel like myself again. Thank goodness, because I was getting pretty worried about where all this was headed.

Also, on Monday night I had my acting class performance—first time on stage since elementary school, a scene from Tennessee Williams’s The Glass Menagerie. We’ve been rehearsing for months, and I sure didn’t want to have to miss it. (I’m writing on Monday afternoon, so fingers crossed all goes well.)

Next on the medical agenda is a tooth extraction on Wednesday and prep for another implant. So, yet another reason I need to get past this whole respiratory episode. The tooth is definitely failing, getting more sensitive, so it really can’t wait much longer.

Then on Thursday, it’s back to the Wound Clinic to check on my slowly healing ulcer. It’s improving gradually, but needs a lot of TLC.

When all that’s done, I need to get my spring Covid vax, I hope on Friday, if all goes according to plan. We’re traveling again soon, so all this has to be wrapped up by the end of the week.

Meanwhile, Al caught whatever I had that wasn’t allergies, and is doing better but still recovering.

Of course, it could always be worse. But this has been one rough patch. Here’s hoping we’re both finally on the mend.

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: Nik

Good Grief

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I really could use a break, right about now. It’s gorgeous outside, a medley of pink and white blossoms, chartreuse young leaves, sunny forsythias, bright red tulips, dainty violets. But I can’t go outside for my walks to revel in spring’s beauty because I’m having one monster allergic reaction to all the associated pollen. I think maple trees are the main culprit, because this happens to me every year, now, when they start to flower. I have been congested and coughing for more than a week.

This is complicated by the fact that I can’t take any OTC decongestants because they will raise my blood pressure. Antihistamines help, as do expectorants and cough surpressants, but it’s really not enough. Can’t use saline rinses because they tend to make my nose bleed. Very frustrating. Had to skip a theater performance this weekend because I was coughing so much, I didn’t want to be THAT annoying audience member.

Then there is the latest dental issue. I’ve written over the years of how I have a delightful complication of scleroderma that causes the roots of my teeth to resorb. Every few years another one gives out, and I have to start the long and expensive process of getting another implant. A few weeks ago, one more tooth that my dentist has been monitoring for years decided that its time is up. The extraction is scheduled for next Wednesday, giving me a week to recover before some planned travel.

At least my left index finger is slowly healing. Two visits to our hospital’s Wound Clinic were very helpful, and between steroid ointment to reduce the inflammation and some petroleum-jelly-infused wound dressing, it is inching along. But it requires a lot more patience than I’ve been feeling, of late. Like I said, I really could use a break from all this mishegas.

And so, Dear Reader, thanks for letting me rant. It’s just been one of those days.

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.

Adventures with Antibiotics

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Now that my blood pressure seems to be, thankfully, calming down, the next frontier is healing the infection in my left ring finger. As I’ve written recently, this has been going on for a couple of months, now. Two multi-week courses of Minocyline perhaps helped, but not enough to really clear the infection.

So, last Monday, I met with an infectious disease specialist to get some help. Finding a broad spectrum antibiotic for me is complicated, because I am allergic to a variety of treatments. This physician is a colleague of the ID doc I had switched to a couple of years ago, after my longtime specialist retired. The new doc was away, so I was scheduled to meet her. A good thing, as it turned out, because she is very empathetic and understood immediately what the problem was. She put me on a ten-day course of levoquin, which I had successfully used a couple of years ago for a severe digital ulcer infection.

Levoquin has a number of potential side effects. The most serious involve tendon inflammation and risk of tearing or rupture, especially the Achilles tendon. So far, thank goodness, that hasn’t happened. But, the evening I took the first dose, I discovered another side effect—insomnia. I simply could not fall asleep until after 4:30 a.m. While tossing and turning and looking up the drug’s impact on sleep (sure enough, I was not losing my mind), I also learned that you should not take ibuprofen with levoquin, because it can increase risk of seizures. I take ibuprofen daily to manage join pain.

So, the next morning, I wrote to my new ID specialist, told her what had happened, and asked about ibuprofen. While she was surprised about my sleep disruption (I always have rare side effects), she double checked and concurred that I should stop the ibuprofen while on this antibiotic and switch to acetaminophen to manage pain. Now, acetaminophen is fine for pain relief, but it does not treat inflammations.

This became readily apparent that night. I began to experience nerve pain in my infected ring finger and the middle finger next to it, which apparently had picked up some of the infection. Again, I struggled to sleep, and I could barely concentrate the next day. Finally, I gave up, contacted my geriatrics team which serves as my PCP, and my NP gave me a scrip for gabapentin to control the nerve pain.

I have not had to take this drug since 2017, when my hands fell apart and I needed hand surgery. It is strong. It makes me loopy and groggy. It exacerbates my blurred vision from Sjogrens. The side effects ease as my body adjusts, but it packs a punch. It also, thank goodness, brought my nerve pain under control. Would this have been unnecessary had I taken an antibiotic that wasn’t contraindicated with ibuprofen? I have no idea.

At least the gabapentin is helping me sleep. And keeping the nerve pain at bay. The levoquin appears to be helping, but I’ll be glad to complete this course and get back on ibuprofen. I have an appointment next week at the Wound Clinic at our hospital to find out how to heal the skin and grow back the nail on my finger—and, I hope, some new ways to prevent this from happening again.

Managing scleroderma is complicated. I’ve learned enough over the years that when I meet a new medical professional, I’m often asked if I am one myself. I’m grateful that I have access to excellent care and that, at least for now, my Medicare still covers it all (another topic for another time). I also am grateful that I can adv0cate for myself effectively. But it is exhausting. Doctors are overworked and miss stuff. You have to pay attention and do your research and speak up. There is no other option.

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: Stefano Pollio