Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

In the Purple Zone

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It’s been a yoyo week of weather, bouncing from seasonal cold to single digits to the fifties today. I’ve had Raynaud’s for so long that I barely notice the constantly changing cold sensations in my hands and feet⎯unless they go numb, of course.

But over the weekend, a friend asked me for some advice for her teenage daughter, who has developed the tell-tale signs of primary Raynaud’s (as opposed to secondary Raynaud’s, which, as the term suggests, is caused by another underlying condition such as scleroderma). When she is cold or stressed, her fingers turn purple, sometimes white and painful.

So this gave me pause as I reviewed for my friend what I’ve learned over the years. Given the crazy cold weather across the country, it’s worth repeating for those who may be new to the condition:

  • Keep your torso warm. While your first thought may be to focus on your hands, if you protect your torso from the cold, your extremities will have access to better blood circulation. Layers are key, here, and the type of fiber matters. Which brings me to . . .
  • Favor natural fibers for clothing. Cotton and wool both wick away moisture and allow skin to breathe. Polyester and other synthetics trap perspiration and can make you feel chilled. Silk is lightweight and has the dual advantage of keeping you warm in winter and cool in summer. I have a silk liner T-shirt that I’ve worn in extremely cold weather for decades; the investment pays off.
  • Get mittens. They may not fit your fashion sense, but they definitely keep your hands warmer than gloves. Avoid synthetic fur liners. Look for insulated mittens that repel moisture. Some people favor battery-heated mittens, the kind you get at hunting stores, but I have never used them.
  • Use wrist-warmers. My favorite brand is Wristies, affordable fleece warmers that come in all different colors, in various lengths, even with pockets for heat packs. I use them year-round, to keep my hands warm in winter and protect them from air conditioning in summer.
  • Wear a hat. Just as keeping your torso warm helps your extremities, so does wearing a hat on cold days. This was one of the first tips I got from my rheumatologist. Recent studies place heat loss through your head at about seven to ten percent. It’s the common sense reason behind old fashioned nightcaps (which I don’t wear) and a good excuse for buying a nice hat (which I do).
  • Wear properly fitted shoes. Pinched toes restrict circulation, which can exacerbate Raynaud’s vasoconstriction. I also look for shoes that breathe, which is why, even as I don’t eat meat, I prefer leather footwear for winter.
  • Turn up the heat. This is a mortal sin for many hardy New Englanders, but I’m fortunate to be married to a local who accepts my need for a warm house and the associated expense (even as we strive to be environmentally responsible with attic insulation and good windows). As I said to my friend about her daughter, take her complaints seriously that the house is too cold. She’s not whining. It’s real.
  • See your doctor. If your hands or feet are consistently numb and you’re experiencing persistent discomfort or pain, talk to your doctor. Protect breaks in the skin, as poor circulation can lead to ulcers that won’t heal and may get infected. There are a range of medications that can counter vasoconstriction, but you’ll need to experiment to see what works and if it’s worth it for 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. Please view Privacy Policy here.

Image: invisiblepower

Grand Entrance

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Almost every Wednesday night, I take a break from writing and join friends at a nearby weaving studio. It’s kind of like an old-fashioned quilting bee, sharing stories as we work on our individual looms, creating Saori textiles, a form of Japanese freestyle weaving. It’s meditative and relaxing and a good reminder that beauty is everywhere around us.

Just one problem: I have a backlog of woven pieces at home, waiting for me complete them. For months, my colorful textiles have been lying in a pile on one of our dining room chairs, taunting me.

“When are you going to get around to us?” they seem to ask. “You were so enthusiastic when you took us off the loom. What gives? Don’t you care anymore?”

Well, yes, but there’s been so much else to do.

“No excuse! Your hands have healed. You can do this!”

One piece, in particular, has waited nearly eight months for me to complete⎯a bright, multicolored textile to replace the tattered curtain on our kitchen door. Last spring I had come close to completing it, machine sewing a yellow cotton border to the sides. Then, in a rush to finish (always a bad idea), I had flipped over the top edge to make a channel for the curtain rod, but stitched the fringed edge to the back instead of the front.

Picking out all those stitches was more than I could handle. I also realized that, even with the yellow border, the piece was still too narrow to cover the kitchen window. Discouraged, I put it aside and didn’t touch it again until my younger daughter came home for a visit over the December holidays and, with her very nimble fingers, took out the stitches for me.

Buoyed by this fix, I bought some turquoise cotton fabric to extend the edges. And this weekend, I finished the curtain, with the help of a new iron (I’d dropped my old one and broken it sometime over the summer), a more accessible storage solution for my ironing board (no more dragging it up from the basement) and some fusible sewing tape that enabled me to avoid using pins, which I find quite difficult to manipulate.

Persistence paid off. The result makes me smile. And it’s a cheerful reminder that, despite last year’s major hand surgery and months of healing, I can still make something beautiful.

Before . . .
. . . and after!

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.

Winter Song

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Many public schools around the country are struggling for lack of resources, and the schools in our city are no exception. But that hasn’t stopped a thriving music program in one of our high schools from training some talented musicians.

Back in May, I wrote about Al and my decision to donate my grandfather’s violin and his father’s viola to our local public school system. I haven’t been able to play the violin for decades as my hands have deteriorated. We hoped that the instruments would enable some deserving students to develop their skills. This past Thursday, those hopes were realized, as we got to see and hear our instruments making music once again

It was the annual Winter Concert at our local arts magnet high school, performed in the auditorium of the next-door middle school. I had never been there before, but we had been invited by the program’s director to attend in thanks for our donation. 

The building is drab, the auditorium cavernous, with wooden folding seats, a mediocre sound system and an aging grand piano that snapped a string during vigorous playing by the choral director. But the program was full of challenging selections, ranging from Bartók to Sondheim. And the students largely rose to the challenge. 

Most impressive was the string orchestra. Their director, who commutes from Boston, has clearly taught the students well.  It gave me such pleasure to watch and listen. All the violinists sat up straight, bowed their strings with excellent form and made lovely music. Our instruments sang again.

Equally as important to me, the string orchestra director treated his students and the concert with respect. He dressed smartly in a tuxedo with a red bow tie and cummerbund for the occasion. He had engaged a wonderful professional opera singer, clad in a scarlet gown, to perform Mozart with the group. The students presented her with a bouquet. There was shared pride in all that they had accomplished together.

We left the concert, which included band, choral and orchestra performances as well, feeling really good. Against significant odds, committed teachers are helping dedicated students rise to their full potential. I’m glad that our instruments have found a good new home.

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: Peter Lewis

Travel Hacks

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This past weekend, I tried a new way to travel to Philadelphia to see my younger daughter. Our small regional airport now offers twice daily, non-stop American Eagle Shuttle flights⎯and so far, for a reasonable price. The airport is ten minutes from my home, as opposed to an hour-plus drive to Logan in Boston or other regional airports. And the flight itself takes less than an hour, as opposed to a slightly longer flight from Boston or
a six-hour drive.

So, worth the experiment. The plane is small, as in one row of single seats on the left, and double seats on the right. Cozy, to say the least. There is also no room in the overhead compartments for regular wheeled carry-on luggage. But they offer you a valet check
for your bag.

This is a great option for me, because it means that you leave your bag at the end of the flight bridge before boarding and retrieve it on the tarmac in Philly (process is reversed for the return flight). It’s great because (a) I don’t have to hassle with asking someone to put my bag overhead since I can’t do  it myself, (b) I don’t have to pay a baggage check fee and (c) retrieval is quick and easy (no waiting at the baggage claim conveyor belt and dragging my bag off before it moves away, also a challenge for my hands).

The other advantage of the small plane: being able to sit by myself in a single seat on the left. While I didn’t need to get up during the short flight, I could easily have done so. And I had the window, too. Best of both worlds.

Recently, when traveling alone, I’ve been stepping up to the gate counter when they ask for volunteers to place bags inside the plane because the flight is too full for everyone’s carry-ons to fit overhead. I get a free checked bag, and since the claim-check is given at the gate, there’s significantly less chance of my bag getting misplaced. I may have to wait at baggage claim to retrieve my carry-on, but it makes boarding and deplaning (who came up with that word?) much easier on my hands.

The only disadvantage of flying from my local airport is no TSA Pre-check. The airport is just too small. So I have to go through the rigamarole of shoes and liquids and all that. But since the airport is so small, there’s virtually no TSA line, and the agents are more patient and friendly. The same was actually true for my evening flight back from the shuttle terminal at Philadelphia International (though the TSA agents were gruffer). It takes me longer than most to put all my stuff in the bins and move it to the conveyor belt, so it’s nice to avoid all the pressure of hustling because others are waiting in line.

So, here’s to regional airports and shuttle flights! It’s not always an option, but if you can, there are some genuine advantages that ease some of the physical and mental stress of travel. Oh, and the flight was a breeze.

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.

Excuses, Excuses

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My desk is a mess. So is my office. Stuff is being fruitful and multiplying when I’m not looking. Honest.

I blame this cluttered state of affairs on my hands. It’s hard to pick up piles of paper and sort and file, because I’ll inevitably bang my fingers. There’s not enough room to properly store my books. I need to have that stack here and this stack there for easy reference. Right.

Then again, I like having lots of interesting stuff around me when I work. There are my little turtle statues to play with. And a bronze T-Rex that I got when I was maybe five years old at the Museum of Natural History in New York. And a cube that I can rearrange to show various paintings by Edward Hopper, depending on my mood.

Of course, I must have at least two pens nearby and a red marker and yellow highlighter and pencils to keep track of my work progress in my handy Bullet Journal. (Yes, I’m addicted.)

And how can I NOT have that pile of reference books on the side of my desk? Or those mail solicitations that I need to remember to follow up? Or those really cool beads that I bought on sale last week to string into a necklace?

Then again, it would be nice to have a clear space in front of me and to get rid of those papers I really, really need to shred, already. And move that stack of old files to the cabinet in the basement. And make some decisions about what stuff is truly necessary.

Al has offered his hands to help anytime. Maybe when I can no longer move in here, I’ll take him up on it.

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.