managing chronic disease

Exposed

Evelyn Herwitz · September 13, 2016 · 2 Comments

For a couple of days recently, I was down to one bandaged digital ulcer—my right thumb, still healing from surgery in June. Every few years, especially when there’s been a long hot spell, this happens. I can actually see most of my fingertips, a bandage vacation.

It’s very nice while it lasts. I can get going in the morning much more quickly—a couple of minutes, instead of the usual 20, to care for my hands. But it feels very strange. The fingers that have been under wraps for months, sometimes for the entire year, are extremely sensitive to touch. My left thumb, in particular, has some nerve damage that becomes much more pronounced when it goes Full Monty. By the end of the day, it’s tingling almost constantly.

Even still, I’m amazed and glad to be able to take a break from the bandages. Careful as I am to keep my hands clean, they get grubby during the day. The bandages shred at the edges and the adhesive attracts dirt. (I only use fabric bandages, which breathe and remain fairly comfortable, despite daily wear and tear.) Plus, I can’t sense exactly what I’m touching. This is the most frustrating part.

But walking around with almost bare hands can have some unexpected consequences. On one of the days when my fingers were exposed, I bought some groceries. The young cashier asked with genuine sympathy, “What happened to your hands?” I gave my standard reply about ulcers (sometimes, it’s just too much to explain about scleroderma) and went on my way. Only later did I realize that she wasn’t inquiring about all the bandages—there was just one. She was commenting on my oddly stunted fingers, misshapen by resorption of bones in my fingertips. Usually, no one can see, because of all the dressings.

Scleroderma causes a myriad of hand distortions. The oddest visual aspect of the disease, in my case, is that I barely have any fingernails left. This is actually what the cashier was asking about—it looks as if the tips of my fingers have been chopped off.

A missed opportunity for a teachable moment about this disease, certainly. At the same time, however, talking about a personal, physical disability with a casual stranger is murky territory.

My hands are strikingly different. I’ve had this disease for so many decades that I don’t really blame someone from wondering about them. The cashier was not ridiculing me. She was concerned, merely articulating what most people who meet me for the first time may be thinking.

However, I also don’t always feel like having to explain why my hands look strange. My hands are my hands, they are the only hands I have, and they serve me well, despite all the struggles inherent to this disease. They are certainly a distinctive feature. Enough said.

All of this will be a moot point, soon. The weather changed over the weekend from sultry heat to cool breezes by Sunday evening. I’m back to three bandages, and as it gets colder, I’ll have more. My stubby fingertips (the middle fingers on both hands are the most damaged) will hide under wraps again for the better part of the year. Time to find my gloves and pull out the sweaters.

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.

Just Add Water

Evelyn Herwitz · August 30, 2016 · Leave a Comment

A little over two years ago, Al and I rearranged some art work in our living room to hang a beautiful, large painting over our couch. And for all that time, two unsightly holes in the wall flanked the painting—reminders of the pictures that had preceded it. They weren’t just simple nail holes; no, the paint had flaked off to reveal the plaster beneath.

It was one of those little annoyances you forget about, ignore, live with—nothing earth-shattering, but an irritating reminder of neglected home maintenance. I had pushed it out of my head as something my hands couldn’t handle.

Until Sunday. I woke up with a plan: I was going to fix the holes myself. Al was working at the hospital, and I wanted to surprise him.

Step One was to locate the wall paint. Sure enough, there sat a can on a shelf in the basement, unopened since 1999 when we moved into our home. I brought it upstairs, set it on some newspaper and pried open the top with a screw driver.

Our living room is painted brick red. What was left of the paint, about a third of a can, was purple. Or so it appeared. I found a dowel and began stirring. The red emerged as a marbled swirl, eventually blending to make a perfect match to the walls. It was thick, but viscous enough to paint.

Step Two was an Internet search for how to patch a hole in the wall, followed by a trip to the local hardware store. Channeling my father, who was Mr. Fix-it and had a very precise way of approaching any task, I bought spackle, a putty knife, a plastic drop cloth, a tack cloth and a sanding sponge that would be easy to hold. I considered buying paint thinner but decided it would be a waste of money for the small amount of paint that I needed.

At home, I gathered all my supplies, including some small sponge brushes from another project. To my surprise, I was able to move the couch away from the wall without much exertion. Behind it, there were two gashes in the wall where the couch had rubbed away paint, so i figured I could practice on those hidden spots, first.

Drop cloth in place, spackle container lid removed (with a bit of a struggle), I was ready to go. I scraped off the chipped paint, sanded the edges to make a smooth surface, tacked away the dust and dipped my putty knife into the spackle. And smiled. It was fun! The spackle spread as easily as cream cheese. Within ten minutes, I had two holes and two gashes neatly prepped for painting.

The spackle was supposed to dry in about a half hour, so I set out for a nice walk around the neighborhood. Upon my return, it was time to pour some paint into a plastic cup and finish the job.

However, I realized when I reopened the paint can that I probably hadn’t sealed the lid quite tightly enough. It was even thicker than previously. I stirred some more and poured a small amount into the cup. I stirred it again. I wished I had bought the thinner, but it was too late to go back to the store. So I set out to paint.

And here is where my project got a little messy. The paint had tiny little globs in it, which balled up on the wall. I had to swipe them off with a series of sponge brushes, over and over to catch them all. Then I realized that the spackle had not dried in one of the deeper holes and had sunk a bit. More spackle, more waiting. Grrrrrr. I wanted to be finished, and I wanted it to be perfect!

About this point, Emily came downstairs to investigate my progress. I groused about the clumping paint and my failure to get any thinner.

“Did you look at the label on the can?” she asked.

Duh. I had to admit that I hadn’t. I’d just assumed it was oil-based from the purple oily layer when I first opened the can. But, sure enough, the paint was acrylic. All it needed was a little water mixed in for a nice, silky consistency.

Em encouraged me to wait long enough to let the spackle really dry this time before I tested it. She promised to distract Al if he came home before I was through. Which is exactly what happened as I laid down the final swath of paint over what had been the second hole.

“I have a surprise for you!” I said, walking into the kitchen with my brush and paint cup. And, indeed, he was surprised—and impressed—not only that the holes were finally repaired, but that I had done it myself. I was, too.

The paint has fully dried, now. If you know where to look, you can see traces of my handy-work. But it blends in well enough. And at long last, the painting looks fully at home on its brick red wall. Best of all, I realized that my hands can take on a light home repair project, with good results. As long as I read all the labels.

Speak for Yourself

Evelyn Herwitz · August 23, 2016 · 2 Comments

One evening last week, during a seemingly endless stretch of hot, muggy days, I was reading at the dining room table with the widows wide open when I heard a cat crying outside.

Our neighbors have two cats, and they often prowl around our back yard now that Ginger is gone. I looked out the window and saw the yellow tabby curled contentedly in their upstairs window, enjoying the meager breeze, silent.

Mrroww, mrroww, mrowww, cried the mystery cat.

Where could it be? This didn’t sound like your ordinary cat commentary. I went out the kitchen door and looked around. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

I walked up the path to our front drive. No cat. I walked back to the kitchen door. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

Then I realized that the cry seemed to be coming from our garage. I opened the back door. There was our neighbor’s white cat, hiding among my older daughter’s furniture, in storage until she moves to a new apartment in September.

It did not take much to coax the cat out of its self-imposed prison. I have absolutely no idea how it got in, since I’m not parking in the garage while the furniture is there. A mystery, indeed.

The cat ran back home, and I was quite thankful that I’d been around to hear its cry.

So, you may wonder, what does this have to do with living with scleroderma? Well, Dear Reader, it’s all about speaking out when you need help. That kitty knew how to get attention (how long it waited to complain, I have no idea—it probably snuck inside somehow to escape the heat) and kept asking for attention until someone paid attention.

Speaking up for yourself when you need help, without any shame or embarrassment, is a crucial skill when you live with any kind of disability, including the physical limitations that are part and parcel of scleroderma. In this Sunday’s New York Times, Rosemarie Garland Thomson articulates it beautifully in her essay, “Becoming Disabled”:

As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones. Confused responses to racial or gender categories can provoke the question “What are you?” Whereas disability interrogations are “What’s wrong with you?” Before I learned about disability rights and disability pride, which I came to by way of the women’s movement, I always squirmed out a shame-filled, “I was born this way.” Now I’m likely to begin one of these uncomfortable encounters with, “And these are the accommodations I need.” This is a claim to inclusion and right to access resources. . . .

Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become nondisabled. It also demands the awareness and cooperation of others who don’t experience these challenges. Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.

Unlike Garland Thomson, I wasn’t born with my disabilities. I can still remember what it felt like (barely, it’s been so many decades) to have fully functioning hands. It’s taken me many years of living with scleroderma to assert myself with strangers when I need help. But I’m no longer afraid or ashamed to ask. Much as I want to do for myself, I also realize my limitations. It’s good to know, more often than not, there’s someone willing to open that door, pop that tab on a soda can, or hoist that carry-on bag to the overhead luggage rack—who’s glad to be of assistance.

If a cat knows how to get the help it needs, when it needs it, then surely, so can I.

Image: “Cat and Mouse” (1975) by Robert A. Nelson, on exhibit at the Worcester Art Museum

Forgetful

Evelyn Herwitz · August 9, 2016 · Leave a Comment

It was 9:30 this morning when I suddenly realized that I’d forgotten to write my blog for today. This has only happened a few times in the four-and-a-half years that I’ve been posting, and those other times, I caught it earlier in the morning so there was no apparent lapse.

I’m getting older. And memory lapses are becoming more frequent.

I’m well past the stage when it felt novel to walk into a room and not recall what I was trying to find. The only reason I can locate my keys before I leave the house is that I force myself to put them in my purse or on the kitchen table when I come home—and I don’t always remember to do so.

Last Friday I went grocery shopping and wandered around the parking lot for what felt like a good 10 minutes before I located my car. For a fleeting few seconds, I wondered if it had been stolen.

I’m getting worse at recalling names—occasionally, even of people I know well. It’s as if a curtain goes down in my brain, hiding the information. The more I strain to remember so as not to embarrass myself, the thicker the curtain becomes. Over the weekend I read an article that explained why our brains aren’t wired to remember names as well as faces—which provided some relief, or, at least, a good excuse.

Amidst the flurry of preparations for our recent trip to Italy, I tried doing a load of laundry and was completely bewildered by the fact that our reliable washing machine refused to start properly. Why? Because I was pushing the power button instead of the start button. (This I figured out after I read the trouble-shooting section of the user manual, which, fortunately, I keep on top of the washer.)

Then there is the challenge of taking all my medications on time. I know, I know, I should use a pill minder. I hate them. I don’t know why. Maybe because they are a reminder that I can’t remember. It’s an act of defiance (or sheer ego) to take my pills morning and night without having to rely on some device other than my brain. But there have been far too many times when I can’t recall if I took them or not, and I realize, much as I don’t want to admit it, that timely medications are too important to mess with.

I was discussing this with a friend last week who is also in his early 60s, and we agreed that the real issue is too much multitasking. I forget when I’m not paying attention—to where I left my keys or parked my car, or how many cups of flour I poured into the food processor to start the bread dough, or whether I actually told Al about my schedule or just thought about it, or when I took my pills. So much of the time, I’m doing one task on autopilot while my mind is in a totally different space.

There are apps for that, of course. We can do a lot more these days because we can offload so much to our smartphones—medication reminders, parked car locators, key finders and more. But that requires remembering where the smartphone is. (Try calling it when you’ve forgotten that you left it on silent from the night before.)

The only lasting answer: Slow down, do one thing at a time, be mindful. And, above all, accept the fact that aging is inevitable.

Image Credit: Szilard Gabor Fulop

Vacation Override

Evelyn Herwitz · July 12, 2016 · Leave a Comment

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

managing chronic disease

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