Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Time Out

· · 2 Comments

Sometimes I feel as if my head is going to explode from our nation’s vicious politics. So it was a great pleasure and privilege to go with Al to one of our favorite getaways on Sunday, Block Island, just off the Rhode Island coast, for a relaxing Father’s Day. The weather was perfect; the sky, azure with wisps of clouds; the water, emerald and sapphire. I stayed away from my news feeds. Best of all—no crowds. Public school is not yet out, so it was the calm before tourist season begins

I read, watched Al brave 58°F water, walked the beach, took photos and collected stones and sea glass. I got my feet wet, too, even if my toes turned purple. (Added bonus: walking barefoot on wet sand helped me to remove a nasty corn from my left foot that had re-emerged shortly after my podiatrist took it out a couple of weeks ago, a huge relief and boost in my ability to walk without pain.) After supper and some shopping, we sailed back to the coast on the ferry’s upper deck, enjoying a beautiful sunset. Just what the doctor ordered.

Here’s a taste of our visit. 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.

Low-Tech Solution

· · Leave a Comment

One of the biggest challenges I face every day, especially during the winter, but also in transitional seasons, is keeping my hands warm. Temps need to be well into the 70s before I don’t have to offset my Raynaud’s spasms with layers of clothes.

For many years now, one of my best solutions has been fleece wrist warmers. My favorite brand is Wristies®, which are soft, affordable and come in multiple lengths, colors and styles. (And no, I do not get any kind of finder’s fee for promoting them. I just like them a lot and have a half dozen pairs that I mix and match with my outfits.)

But my Wristies, alone, are not really enough when the weather is cold or fluctuating. This fall, as I was trying to help my hands to heal from all the surgery, I hit on a low tech solution that works very well: I fold up the Wristie like a cuff and insert a disposable hand warmer.

I would have preferred something recyclable. But no reusable hand warmers that I found online were satisfactory. There are some brands that work on lighter fluid, which held absolutely no appeal. I tried a style that you snap to mix chemicals inside the plastic pouch to generate heat (you boil them to recharge), but they didn’t work. And I wanted something that was small, comfortable and long-lasting.

So that’s how I came upon Heat Factory hand warmers, which are packaged in pairs and come 40 to a box. When removed from their wrappers, they just need a little shake and last all day. I place the packs in the Wristie “cuffs” on the inside of my wrists, next to the blood vessels near the skin, and they provide gentle, steady heat that keeps my fingers nice and rosy, even when I’m typing.

The arrangement works best when I’m wearing a long-sleeved sweater with ribbed cuffs that I can pull over the Wristie, which helps to keep the hand warmer in place. I do believe this has helped me to avoid more ulcers over the winter (right now, only have one on my left thumb that is healing from yet another infection).

The other, obvious solution is exercise, of course. I must admit, I haven’t been moving as much as I need to in the cold weather. Have to get back to those daily walks. For solitary, sedentary work at my computer, however, as well as driving and even walking around on chilly days, this low-tech combo is win-win. Hope it helps you, too.

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.

Confidence Boost

· · 2 Comments

Passover preparations are always a major challenge for my hands, and this past week posed no exception. To my great advantage, Al readily accepted the role of sous chef, the only way we could do all the cooking in time for the first seder, which we hosted on Friday night.

Since we serve a lot of vegetarian entrees, there was much peeling and cutting and chopping. Staging the meal involves advanced planning and careful timing of what to make a day ahead and what to make within a few hours of serving. Al did most of the prep, and I did the strategy and stirring and seasoning. Our daughters helped with last minute errands and crunch time details. Per usual, we were working right up to the doorbell’s ring. But we made it, the seder was thought-provoking, the meal delicious and enjoyed by all.

Friday night, however, I was totally exhausted when our guests left. My feet were shot from standing all day in the kitchen, and my back ached. My hands, remarkably, were in pretty good shape. Our cousins hosted the second seder on Saturday night, which provided a good respite.

By Sunday, when we hosted another big family meal, I had rested up and was able to do some of the cooking on my own. Indeed, I haven’t done this much in the kitchen since my hands fell apart last summer. I could actually grasp the handle of a French chef’s knife and chop fairly efficiently. I was very careful not overdo, and I have no new digital ulcers, as a result (at least, not yet).

My confidence got another boost on Monday afternoon, when I graduated from my post-surgical occupational therapy. My OT checked my grip strength, compared to our last appointment about a month ago, and the exercises she had given me paid off with a 20 percent improvement. I am well within functional range, which is so encouraging.

All of this means a great deal at this time of year, when my hands seem to be most vulnerable. Though I have not found any definitive research on seasonal patterns in skin ulcers, the spring months are typically my worst. It was around this time last year when my digital ulcers began to go out of control, in part exacerbated by Passover preparations. But the weather definitely has something to do with it—the constant warming and cooling, the dry air from heating systems, the transitions from warm house to not-quite-cold-but-cold-enough outside—all seem to add up to more trouble.

I’m monitoring my fingers very carefully, trying to be mindful and set limits on what I can and cannot do. But it’s always good to discover that the boundaries are wider than I assume. Just like the snow that blanketed the trees Monday morning and was gone by sundown, looks and expectations can be deceiving.

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: Syd Wachs

How’re Y’all Doin’?

· · 2 Comments

Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, 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.

How Not to Spend a Snowstorm

· · Leave a Comment

We are emerging from a deep freeze. Over the weekend, temperatures here in Central Massachusetts dipped to 1°F—in the daytime. By comparison, teens and twenties seem, if not balmy, at least bearable.

This was on top of a Nor’easter that dumped 17 inches of snow on our fair city, an all-day event last Thursday that I was grateful to avoid while hunkered down at home. But contrary to how I would have preferred to spend a snowstorm—enjoying comfort food while watching the snow blow at a 45 degree angle outside—I had the distinct displeasure of having to do a day-long liquid fast, in preparation for my 10-year-plus colonoscopy screening the following morning.

I had been postponing this distasteful exam for at least six months. The original was scheduled for the summer, but as my hands deteriorated, I decided to spare myself additional discomfort and put it off to the fall. Then, when I began the HBO therapy, I had another excuse to put it off until January.

When the storm predictions looked more and more threatening, I was hoping the weather might force another extension. What if it dragged on until Friday? What if our road wasn’t plowed? No such luck. The snow began to taper off around 5:00 p.m., just as I was starting the noxious lemon flavored drink to purge my gut.

According to the instructions, you’re supposed to drink two liters of the vile stuff the evening prior and the remaining two liters the next morning, with three hours to spare before the procedure. Now, I don’t normally drink that much fluid in a day, let alone in a matter of hours, let alone something that sickly sweet with such an intentionally unpleasant outcome.

But, drink, I did. Fortunately, I had a good book to read as a distraction—The Accursed, by Joyce Carole Oates—which, I realized later, was an appropriate title for how I was feeling in the moment.

I woke up around 4:00 a.m., gave up on sleep because my hands were bothering me (since I couldn’t take Ibuprofen with food), changed my dressings and set to work on the remaining two liters. I got through about half of it when I decided I was done. There was nothing left to come out, and I couldn’t stand any more.

As it turned out, that was the right call, because when the admitting nurse Friday morning asked how much I’d drank, and I told her three of the four liters, she simply wrote it down and said “fine.”

The outpatient center where I had my procedure does nothing but endoscopies of one sort or another. I asked how many colonoscopies they do in a day, and the nurse said about 50. Wow. All the other patients there looked about as wiped out as I felt, waiting to get it over with. I signed a bunch of forms, including one fascinating list that included alternative screening tests, such as X-rays. Did anyone give me the information in advance that this was an option? No. Did I even think to ask? No. It may not be as thorough a screening, but I would have at least liked to have had the discussion with my primary.

Then there was the question of IVs. I knew they would give me a sedative for the procedure, which was fine by me. But after the nurse inserted the hep-lock in my arm and flushed it with saline, she simply said they would give me “some medicine” during the procedure. I was not about to leave it at that. “What kind?” I asked. Only then did she give me specifics, which were also listed on another form I then had to sign, though I seriously wonder if they expected me to read it before signing (which I did). Fortunately, I had experience with both meds. Even as she’d reviewed my numerous allergies in advance, I would have preferred specifics up front.

Into the procedure room I was wheeled. The team was friendly and professional. I chatted with the doctor’s assistant about our respective experiences driving in snow storms. I learned that they had actually stayed open the morning of the storm for those brave enough to go through with their tests, despite the snow.

Soon I was half-asleep, conscious of something going on “down there,” but more in a state of wonderment. As I dozed in recovery, I made note of all the beeping and dinging machines nearby. Apple juice and graham crackers never tasted so good. Best of all was the immediate report from the doctor that I passed with flying colors. No signs, either, of sclerosis in my colon, thank goodness.

It was a relief to see Al in the waiting room, ready to take me home. I made myself a nice, late breakfast of scrambled eggs and toast, then lay down for a nap. The next extremely cold day, I was very glad to stay home.

Ten more years until I have to do this again. I hope, by then, some brilliant person will have devised an easier, comfortable, quicker way to do this exam. Maybe we’ll just be able to scan our own colons and transmit a hologram for inspection. Wouldn’t that be nice.

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.