Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Spaced Out

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Adding a new medication to my mix always makes me wary. So it was that I approached my recent appointment with my neurologist with some trepidation, as well as a list of drugs I’d researched that can be used to treat the nerve pain reported herein that has been plaguing my ulcerated fingers.

The options boil down to two classes of drugs: certain antidepressants and certain anticonvulsants. Those groupings, alone, gave me pause. I found the classifications intimidating. Plus, there are a lot of side effects associated with either. I brought a chart I created, based on an article I found on the Harvard Health website, to my appointment.

We discussed all the options and potential issues. He recommended the same medication that my internist had suggested when I had seen him for my annual physical a few days prior: gabapentin, also known as Neurontin. Although this medication is used to treat epileptic seizures, it also is commonly prescribed for the kind of nerve pain I’ve been experiencing. My familiarity with this drug dates back 18 years, when my mother was dying of cancer and Neurontin was one of the meds she was given by the hospice staff to manage her pain. Not the most positive association.

However, my neurologist felt that gabapentin has the fewest interaction effects with other medications I’m taking, and also is not as likely to cause dry mouth as the antidepressants. This, of course, is a major consideration, given that I have Sjogren’s syndrome. So I agreed to give it a try. (I must admit, though, that the notion of taking an antidepressant right now, with all the craziness in the world, had its appeal.)

He wrote the prescription to enable me to go up to 300 mg a day, but said to start with one 100 mg pill at night and see how I felt. Being the researcher than I am, of course I looked up all the possible side effects to be sure I knew what to watch for.

And this is where too much information can sometimes be a hindrance. There is a long list of scary side effects, including, but not limited to: clumsiness, unsteadiness, dizziness, fatigue, issues with memory, trembling or shaking, depression and suicidal thoughts. Alrighty then. . .

Of course, the problem with lists like this is that you have no idea what the research is for each symptom. Just seeing the list or hearing it, as in all those annoying drug commercials on TV, tells you absolutely nothing about the real risks of any particular side effect. Here, at least, is one resource that gives some sense of side-effect frequency.

The only real way to find out was to try the medication. So I did. At the 100 mg level,  I felt woozy at first, then my body adjusted. However, there was no real relief from the nerve pain. So after several days, I bumped up to the 200 mg level. Once again, fatigue was the main side effect until my body adjusted. This time, I began to notice some pain relief, but not really enough to block all of the sporadic electric shocks in my fingers.

So, on Friday I emailed my neurologist and asked him what he thought about going up to the full 300 mg. He wrote back that evening, encouraging me to try it for a week at that level. If I felt lousy or it didn’t work, then it would be time to try a different medication.

Once again, fatigue and grogginess were the main immediate side effects of a higher dosage. I also experienced a less-reported symptom of sensitive teeth for the first couple of days. I’m not alone in this. I found comments online exploring the issue in various forums. Leave it to me to have an unusual side effect. On the plus side, however, the shocks in my fingers have subsided significantly.

What is not resolving easily is the extreme sensitivity in the new skin that is forming where the ulcer scabs are beginning to recede. This is a major issue when I change my bandages twice a day. More research and another visit to my vascular surgeon/wound specialist are in the works.

I am trying to accept that there are just no easy solutions to this endurance challenge. I hate feeling like a space cadet from the medication, and I wish I could stabilize my hands, already, even as I know it will take months for the ulcers to heal. I continue to be proactive about finding new ways to manage. At the same time, I’m realizing that I have to adjust to a new baseline of white noise discomfort in my hands in order to get through it.

That, and remind myself to find the humor in all the ridiculous interpretations of my spoken words by my Dragon software. No, I really didn’t mean “dictator umpire” when I said digital ulcer!

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: NASA

3-2-1

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The house is very quiet again. Over the weekend, Al helped Emily, our youngest, move to a new apartment in a new city. She had started her new job a few weeks ago, and come home for a quick visit to collect her furniture and pack up the rest of her belongings. This, following a year-plus search for the right first step in a career in higher education, working with students with disabilities. She found the perfect fit, and we couldn’t be happier for her.

But I will admit, as the U-Haul pulled out of our driveway, I got teary. This was it. She’s launched. Our eldest, Mindi, has been working for almost two years as an early intervention social worker in Greater Boston. So now, both of our daughters, very capable and dedicated young women, are on their own.

It’s one of the big goals of parenthood. We made it.

And the house is very quiet again. I find myself at a bit of a loss for how to fill the silence. It’s different this time from when our daughters were in college and then graduate school. Our home was still the common ground, the place everyone would always return to. Now, for both of them, it will be the place to visit. This is as it should be, but it still feels strange.

Some of this emptiness also derives from the fact that I cannot use my hands in the way I’m used to. My go-to instinct when I’m alone is always to make things, whether it be my writing or sewing or weaving or cooking up something special for dinner. Writing is now much slower with dictation software. The other activities must wait until my digital ulcers make more progress toward healing. I’m relying on Al for a lot of help to do the most basic tasks, from chopping vegetables to opening all sorts of containers. He has been a wonderful support, and I am very grateful for his willingness to do whatever I ask, but I wish I didn’t have to.

I started new medication to ease nerve pain, and it’s taking a bit of adjusting—finding the right dose and adapting to the side effects. The healing process is complicated. I’m back on antibiotics, once again. All of this and the need to constantly problem-solve simple tasks is tiring and leaves me feeling more vulnerable.

On the plus side, it’s finally summer. We ate our first meal on the deck Monday night. The oppressive humidity of the past few days has finally eased, and it will be a comfortable night for sleeping. My bandages have stopped glomming to my fingers as the air has dried out. This evening, as I write, I think (I hope) that my new medication is beginning to take the edge off the neuropathy in my hands.

On to the next chapter.

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.

Dispatch from the Trenches

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First, the good news . . .

Here’s what I discovered about my strained back over the past week: it’s really important to assess all factors that may have contributed to the injury in April. I originally thought that I had somehow hurt my back during a weeklong respiratory virus that involved too much coughing and sneezing. This was logical enough, because the coughing and sneezing—particularly the sneezing—immediately preceded the night when I stepped out of the car and struggled to walk.

What didn’t make sense was the amount of time it was taking to heal—going on 10 weeks, now, including a lot of rest, heat packs and physical therapy. Then I began to question something very basic: my desk chair.

I have had this chair for years. It’s a good office chair, but it doesn’t fit me quite right. I had bought a mesh lumbar back support a few weeks ago, but it wasn’t helping. So I decided it was time to try out some alternatives. Lo and behold, a very affordable mesh office chair with good lumbar support felt just right. I bought it, Al and I put it together, and I have been using it for more than a week. My back is almost back to normal. Eureka!

I’m still doing my back exercises, and I’m starting to take walks again to build up my stamina. All of this is a tremendous relief.

I wish I could say the same thing about my hands. It’s been one of those weeks when I wish I could unscrew my hands and set them aside to heal while I used a spare pair. There is no easy solution to the five very deep ulcers on my fingers, two on the left hand and three on the right. They are healing at a glacial pace, despite the arrival of summer. This past weekend, things began to deteriorate. Although, so far (knock on wood) I’ve avoided infections, I have developed nerve pain that feels like occasional, random electrical shocks in various fingers. No warning. Extremely upsetting.

In addition, it seems that I have also developed a reaction to the lidocaine gel that was so helpful over the past few weeks in minimizing pain. My skin began burning and looked very irritated. So I’ve been punting with steroid cream and antihistamines, awaiting upcoming doctor’s appointments.

Fortunately, I was able to schedule a last-minute appointment with my neurologist this Wednesday, whom I’ve had no reason to see for the past five years, to discuss pain management. I also discovered a promising ointment for healing skin ulcers that is backed by encouraging research; it’s supposed to arrive later today, and if it works, I will report back.

The bottom line is this: these ulcers will simply take months to heal. There is no getting around it, no magic Eureka moment when I realize I can change one element in my environment and make it all go away. I’ve consulted with an excellent wound care specialist and know that my care routine is solid. Now I need a good pain management regimen that doesn’t knock me out or cause other negative side effects, in order to go the distance, however long that may be.

I’m trying to be patient. I’m trying to be creative. I’m trying.

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: Breno Machado

Stardust

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In his new book, Astrophysics for People in a Hurry, Neil deGrasse Tyson makes this stunning observation:

The universe continues to evolve. And yes, every one of our body’s atoms is traceable to the big bang and to the thermonuclear furnaces within high-mass stars that exploded more than 5 billion years ago.

We are stardust brought to life, then empowered by the universe to figure itself out—and we have only just begun.

This is a very elegant way of saying, yes, we are all interconnected, here on Earth and, in ways we do not yet understand, to the entire Universe. It’s a Big Concept, mind-blowing.

I had a tiny taste of that interconnectedness last week when I picked up a voicemail. The message was from a woman who identified herself as living in New York City. She had found my number through an Internet search (which was a little creepy, I have to admit—am I really that easy to find?) because she was in possession of a wedding scrapbook that belonged to my parents.

The date on the album was July 1, 1949—their wedding day.  She explained in the voicemail that she had acquired the album through an antique store in Beacon, N.Y., a town on the Hudson River about an hour north of where my parents used to live. She left a number and hoped I would call back.

To say I was shocked is an understatement. My mother died in 1999. A couple of years later, my father’s health began to decline, and we needed to move him into an independent living community. When we sold the house, there was an estate sale. I wasn’t present, but my older sister and my father were. Dealers came before the sale was open to the general public, looking for items to buy and resell. Later, when I was helping my father move into his new apartment, I realized that the wedding album had disappeared. All these years, I’ve wondered what happened to it.

Given the uncanny accuracy of the date on the album and location of the antique store, plus the friendly tone of the woman’s voice, I decided to respond. I also looked her up on the Internet and found that she had a studio in Manhattan. Her recording on her phone sounded legit, so I left a message. A couple of hours later, she called me back.

It turns out that she is an artist (hence the studio) and an aficionado of 1950’s ephemera. The scrapbook apparently contained all sorts of correspondence, including telegrams, congratulatory cards, newspaper clippings and more. About 15 years ago, she and family members had been nosing around the antique store, when she was drawn to my parents’ album. Although she didn’t purchase it, her family saw how much she liked it and bought it for her as a gift.

Much as she enjoyed it, early on, she considered trying to return it to a family member. But this was before the Internet was so robust. Recent events in her personal life compelled her to try again. And that’s when she found me.

(Mystery solved at last, it boggles my mind to think that the dealer who bought the album in the estate sale never bothered to check with my father and sister, sitting right there, to be sure that such a personal item really was for sale. But I digress.)

A couple of days after the artist and I spoke, a large package arrived via FedEx. It was the long lost wedding scrapbook, a revelation to me, because my memory was of a photo album, rather than such a rich compendium. Not only does it include a page from my mother’s diary on the day she got engaged to my father; it also includes many personal letters, such as my grandparents’ ecstatic correspondence when they learned that my mother was pregnant with my older sister. In the center of the album are my parents’ wedding portraits, plus two wonderful photos of my grandmothers in their elegant hats, holding glasses of champagne. I thought these images were lost forever.

The Internet is a source of so much that is vile in this world—and so much that is magnificent. Through the ether of cyberspace, empathy can spread. My deepest gratitude to the artist who thought enough to consider how much it would mean for our family to recover this lost treasure and took the risk to find me. Stardust, indeed.

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.

Adaptations

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Last week, I met with a wonderful occupational therapist about how to better manage tasks I do with my hands while my ulcers heal. She was a great listener, compassionate and insightful. And I learned a thing or two.

Adaptive tools have come a long way in the decades since I last had a consult of this type. I’m still skimming the catalog she gave me to figure out what will be most useful.  Already on order: a tool to help with personal hygiene, which is one of my biggest challenges right now.

In addition, I cut a piece of the foam tubing she gave me to slip on my computer stylus, and now I can use it in my right hand for typing along with two fingers on my left hand. The dictation software is good, but it does not allow for fluid writing for my more creative projects. So this is a stopgap.

And now for a really neat trick that she taught me — a new and improved way to tie my sneakers. There are plenty of gadgets, including elastic laces, that can make this easier. But this trick is just too cool, so I pass along to you:

Step 1: Tie lace left over right.

Step 2: Tie lace right over left. (If you sail or were a scout, you’ll recognize this as the beginning of a square knot. And, yes, you can also do it right-over-left and then left-over-right!)

Step 3: Insert the two ends of the laces through the center of the knot, leaving a loop on either side to form a loose bow.

Step 4: Pull each loop evenly at the same time to either side, and, voila, you have a neatly tied shoe! You may have to play with the size of the knot opening to make it work; a little practice makes perfect.

You can easily tie a double knot to secure it. Whoever was the genius who figured this out, my heartfelt thanks. May the adaptive force be with you!

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.