Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

infections

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

Cooped Up

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It’s 30 degrees F here today, but the real feel is about 19. It snowed over the weekend, just over four inches of fluffy white stuff, very pretty for a day and now shrinking into icy clumps. It’s too cold for me to take a walk, and the streets are patched with ice.

Ugh. I know it’s a lot colder elsewhere in the world, and there are far too many other urgent issues that demand concern. But right now I’m just feeling stuck inside, when I do my best thinking outside.

My ulcers are healing slowly, a bit better than last week, thanks to starting antibiotics when I realized I had at least one and possibly two infected fingers. But I still can’t do a lot of typing. Which also helps me think.

So I am just muddling along, trying to make the most of this cold day without getting too stuck in the muck I can’t control. I think we could all use a shovel to dig ourselves out, right about 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.

Mouse Wars II: The Empire Strikes Back

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It’s been a month since we first confronted a mice invasion in our home—during a bright full moon. Well, the moon is full again, and the problem we thought we’d solved weeks ago turns out to be a lot more intransigent than I had hoped.

4 muisjes op kaasI hate the idea of killing mice. It’s not in my nature. We never had an issue while our dear old Golden Retriever, Ginger, was alive. But Ginger died just over a year ago, and it seems that the mice are having a veritable field day somewhere inside the walls or under the floorboards of our house.

This all started when we were careless enough to leave a bag of birdseed unattended in our garage. Mice discovered it and took it as an invitation to settle in. When I finally sealed off the bag in a plastic bin, they sought refuge inside our warm and cozy home. Under a full moon, they began zipping all over our first floor.

Given that I have scleroderma and am very susceptible to infection, we decided to set traps and stop the invasion. We caught a half dozen mice. Things settled down, and I thought the mice had moved on.

No such luck. When the temperatures dropped a couple of weekends ago to -19º F, all of a sudden we discovered that we were not alone. A mouse popped up in Emily’s room while she was home visiting, to her alarm. We set a trap. No takers.

I set a couple more traps. Nothing. But the mice were leaving their calling cards all over the place—behind the kitchen garbage can, in back of a pile of books near Al’s armchair, in the upstairs bathroom, you name it. One recent morning, Al found a foil-covered peppermint patty that had been dragged from the kitchen table to the floor, the wrapper nibbled to shreds and part of the chocolate chomped away. I’ve got to hand it to them—they know the meaning of teamwork.

Last Friday I went to the hardware store and bought some bait traps. But I didn’t have the heart to set them. Maybe the mice would go away! Maybe they’d realize there really wasn’t any food lying around (no more peppermint patties, for certain) and it was time to move on!

Then I walked into the kitchen Saturday night and saw a mouse darting from the top of the computer cable box (no doubt warming itself). On Sunday, I was working at the kitchen table, too absorbed in writing my novel to get up and check out the slight rustling noise in the dining room. Later, we found a couple of calling cards on the dining room table. Ugh.

So, Monday morning I finally called the pest control professionals. Here’s what I learned: The reason we didn’t catch any more mice had nothing to do with how many mice were left. Mice are smart and they’d figured out that the traps were deadly. And the fact that we’ve found mouse droppings upstairs and down means we have a big problem on our hands.

A mouse expert is coming first thing Friday morning to do an inspection, set the bait and close off any small mouse holes. I wish we didn’t have to go this route, but from the research I’ve done, there really isn’t an alternative when it gets to this point. A mouse’s gestation period is about 20 days. We’ve gone through a few cycles, easily, since all this started, for who knows how many females.

Mice have been on this planet as long as humans. They will probably outlast us, in the end. They make cute pets. They have helped scientists discover much about animal and human behavior. They are entertaining characters in children’s books and cartoons. But they are not welcome to colonize our home.

Here’s hoping, next full moon, I’ll have nothing more to report. May the Force be with us.

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.

Image Credit: ChIandra4U

Time to Stop Typing

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I’ve been having trouble sleeping the past few nights. My finger ulcer keeps waking me up. Usually when this happens, I have an infection. But that’s not the case this time. The skin is just too raw on the tip of my right ring finger, but I need to type and do other tasks, and the ulcer keeps getting irritated.

Now, I should be grateful that, at least so far, I don’t need to start antibiotics. I hate taking them. But the good thing about infections, much as they hurt: antibiotics provide significant relief within about 48 hours.

My problem at present is that there’s no quick fix for this particular variant of ulcer pain. It’s like having a headache in my finger. The only cure is time.

Our fingers have an extremely dense concentration of nerve endings. According to a recent article in The Guardian, our fingers have so many nerve endings that our brains actually outsource some neural computations about object orientation and movement to our fingertips.

All of those nerve endings make it possible to distinguish a baby’s cheek from a scruffy beard, stovetop heat from freezer chill, a satin sheet from flannel. When you think about it, the range of our fingers’ neural intelligence is really quite astounding.

That neural density also accounts for why it hurts so damn much when we get a paper cut, or smash our thumbs with a hammer. . .or develop digital ulcers.

The only encouragement I feel right now is that I’ve had two other recalcitrant ulcers in the past few weeks that gave me the same trouble, which are now, thankfully, past the achey stage. I’ve noticed over the years that there is some kind of tipping point in the healing process, when my damaged skin cells seem to wake up and repair themselves in large enough numbers that the pain level recedes. This can happen overnight.

So I’m going to cut this short, give my sore finger a break, take some Ibuprofin and Tylenol (they work differently), redo my bandages, and—I hope—get some sleep. Maybe tonight’s the night my body will work its magic, once again.

Photo Credit: JonathanCohen via Compfight cc

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.

Clean Hands, Warm Heart

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Somewhere I once read that Donald Trump’s aides carry alcohol wipes for him, so he can clean his hands after every handshake. I don’t know if it’s true, but he has a reputation as a germophobe, so I wouldn’t put it past him.

sanitizerMuch as I don’t want to have anything in common with The Donald (although the equivalent of even a small percentage of his fortune would certainly be nice), I, too, am in the habit of cleaning my hands frequently when I’m in public.

In my case, however, I have a good excuse. I have far too many digital ulcers that provide super highways for bacterial infections, if I’m not careful.

So I am. Careful. Almost to the point of being obsessive/compulsive.

Recently I’ve been using mass transit more often when I have commitments in downtown Boston. Driving and parking can take up to an hour-and-a-half each way, sometimes even longer, depending on traffic. Taking the train enables me to get work done instead of wasting all that time driving. It’s also much more relaxing. But I never travel without my little bottle of antiseptic hand-cleaner.

I’m always cognizant of when my hands touch surfaces that many other hands have touched—like door handles between train cars or escalator handrails on the way to the T (Boston’s subway) or those straps or metal poles that you need to grab in order to stay upright when the subway jolts and jerks. When I arrive at my destination, out comes the hand-cleaner.

Other points of contact that make me wary: ATM consoles, those ubiquitous ball-point pens that are always handed to you for signing your credit card slips, doors to public buildings and magazines in doctor’s waiting rooms. Once I’m back in my car, out comes the hand-cleaner. I also keep my own pens at the ready.

Public restrooms, of course, are high on the list. I recently saw a video clip of The Doctors talk show that discussed where the most germs reside. It’s not the first stall, by the way. We all avoid that one. It’s not even the toilet seat. It’s the toilet paper dispenser. Think about it. Then there’s the door handle on your way out. So, my latest solution is to pour some hand-cleaner in my palm as I leave and rub it into my hands as I walk. (Washing my hands with soap and water doesn’t work because I have too many bandages.)

If all of this sounds a bit paranoid, well, maybe so. But I have had far, far too many serious bacterial infections in my fingers over the years. The pain can be excruciating. Sometimes I have ended up on IV antibiotics for months. Thankfully, it’s been a long time since that’s happened, and part of the reason, I am certain, is that I’m so careful.

My method is not foolproof. And I go through a lot of hand-cleaner. But the bottom line is that it certainly doesn’t hurt. And as long as I’m not insulting anyone by whipping out my hand-cleaner after a handshake, then why not? Minimizing infections—and excessive use of antibiotics—is well worth being a tad obsessive. Just because you’re paranoid doesn’t mean that bacteria isn’t out to get you.

Photo Credit: coolmikeol via Compfight cc

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.