Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

stress

And Just Like That . . .

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For weeks now, my bonsai, a Brazilian rain tree that I have been cultivating for nearly four years, now, has been shedding leaves. While some of this is to be expected—it’s a deciduous tree, after all—it just seemed out of the ordinary. Nearly every morning, I’d discover more yellow amidst the emerald green.

Was I watering it too little? Too much? Was my bonsai upset with the cold weather? The heat pump? Had I lost my touch? I had made sure to give it a little fertilizer to help it through the dark days of winter. A mistake?

Then, last Tuesday, all of a sudden . . . tiny new leaves! A Brazilian rain tree is characterized by multiple, symmetrical leaves that fold up like books at night. These newbies appeared as if a little green library was sprouting. And each day, since, the new leaves have grown larger, opening up to sunlight. It seems my bonsai was communing with all the plants outside that have begun to sprout their own new leaves, in synchrony.

Every spring’s rebirth is a miracle—and a reminder of Nature’s intense imperative to replenish and grow, despite the odds. It’s such a great gift, and a welcomed assurance that even when our world is so chaotic, life rebounds.

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.

The Scam I Almost Fell For

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Bad actors are everywhere these days. Last week, I finally was able, with some tech support, to reinstall my computer virus scanner, run a sweep, and reassure myself that I did not download a virus a few weeks ago when I accidentally opened one of those fake alert screens that scream at you that you absolutely must save your computer by calling or clicking their blinking red link. (I immediately turned off my computer).

This weekend, the scammer came by phone. I saw a call from my credit card company on my cellphone and answered it. A man’s voice inquired if I had recently made a $1,300 charge on Amazon, which I had not. It was supposedly made by someone in Dallas. He needed me to confirm my full credit card number (he listed the first six digits) to cancel the charge and give the last four digits of my Social Security number.

As I was getting my card from my wallet, a little voice in my head piped up. Why would he need my credit card number, let alone part of my SSN? I’ve dealt with my credit card company’s fraud unit before, and they don’t work this way. Also, on the few occasions when there has been a fraudulent charge on my account, they first contact me by text, and all it takes is a confirmation of the error to deny it. Plus, when I have had to call them to cancel a lost card, there is always noise in the background, as if the person works in an open office space. No background voices on this call. Then there was the phone number I was speaking to, a Boston area code, rather than an 800 number.

So, I asked the guy on the phone, “How do I know you work for [my credit card company]?” He got irritated, then downright mad. He claimed that the person in Dallas had actually used my cell phone number to call and try to get the charge approved. This made absolutely no sense. He said if I didn’t act now to give him what he requested to cancel the charge, I’d have to wait until Monday to reverse it. This also made no sense, since my credit card company’s fraud unit is available 24/7. I told him I would not give my credit card number over the phone and was going to end the call. His ultimate retort? “I’m going to hang up in your face!”

So, there!

After this weird exchange, I blocked the number on my phone and checked my credit card transactions online to see if there was any pending $1,300 charge. There was not. Then I called the company’s fraud unit to double-check, to let them know about the scammer, and to give them the phone number that had shown up on my cellphone. The woman I spoke with was professional, polite, and appreciative. And there were other folks in the background.

Why didn’t I hang up right away? I had been trying to take a nap when my phone rang and was not all there. The caller ID said the name of my credit card company. And he did suck me in with his claim about the $1,300 charge. Thank goodness I woke up enough to realize what was going on.

So, once again, I share this adventure as a public service. Bad actors are everywhere these days. Be prepared.

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

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

A Break from the News

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This weekend, my dear husband persuaded me to get out of the house on a bitter cold Sunday afternoon for a visit to our art museum’s wonderful annual Flora in Winter exhibit. It’s always fun to see how area florists interpret artworks, and given the flood of horrid headlines here in the U.S. of late, the exhibit was all the more refreshing. Seeking out beauty is essential these days, to remind myself what matters.

Here are some of my favorites. 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.

No Easy Fix

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So, here’s what I learned at my optometrist last week, with a thanks to all who expressed concern and good wishes:

My blurry vision is due to the fact that my eyes simply don’t make enough tears, the result of Sjögren’s Syndrome that I’ve had for decades. The relief I’ve gotten from using EvoTears, which form a moisture-trapping film over my eyes, is real, but not enough to keep my corneas truly healthy. So, especially in my right eye, which is more blurred, my vision is effectively analogous to looking through a dirty car windshield. This isn’t cataracts. It’s Sjögren’s. And there’s no point in updating my eyeglasses prescription until my corneas heal, because I can’t get an accurate assessment of any vision changes right now.

The other important fact I learned: The Restasis drops (standard treatment for dry eyes) that I use before the EvoTears are in a castor oil suspension. I need to wait a half-hour between the two eye drops, or I’m effectively trapping the castor oil in my eyes. This explains some of the irritation I’ve been experiencing. So, that’s an easy fix.

My optometrist gave me samples of a varenicline solution nasal spray, which I’ve used before, that stimulates tears, to see if this in combination with both eye drops will help. There are two issues with this approach: First, the spray helps, not not markedly, so far. Second, the nasal spray is outrageously expensive, available only by prescription, and not covered by my insurance.

So, I’m back to finding a way to tolerate the scleral lenses. He checked both lenses for me, and there are no scratches, so however I injured my eye a few months ago was some kind of fluke in the way I inserted the left one. I will need to keep the lenses in at least four hours a day, four to five days a week, to really heal my corneas and maintain them.

With six fingers in bandages right now, including that left ring finger still healing from a lost nail and an infection, that’s a challenge. So, I’ll just need to tough it out with the medications I have until I have better dexterity again. (As a side note, I’m typing with just my left pinky on the left hand right now, and somehow I’ve learned to type by touch and don’t have to look at the keyboard. So, that’s some progress!)

If there is any advantage from dealing with scleroderma and its sidekick diseases for more than 40 years, it’s this: I know my body does eventually heal from assaults like this. It just takes time and a lot of patience and vigilance. As the weather warms and my hands improve in their seasonal cycle, I should be able to master the lenses again and find the right balance. I’m grateful that I have access to excellent care and medications and the scleral lenses, even if they are difficult to deal with. The alternative is much, much worse.

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: Unsplash+