Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

If the Shoe Fits

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I’ve been on a quest for good walking shoes for at least a month, now. With the weather warming and travel plans ahead, I want to be sure that I have a reliable, comfortable pair that will minimize my feet issues, even as I am coming to accept that no pair exists that will make walking fully pain-free.

This is always a challenge. The biggest stumbling block is that you can’t walk outside in shoes that you’re trying out at home without committing to buying them. (I know of one clear exception, Allbirds, which gives you a 30 day trial of walking anywhere—if the shoes don’t work out, you send them back and they are donated to people who are homeless. Zappos has also accepted returned shoes I’ve lightly worn once outside, but I don’t want to take unfair advantage of that option.) So how to really know if the shoes will be comfortable on pavement or uneven terrain, which are always the big challenges?

My strategy now is to wear a pair I’ve bought around the house for a few days. Usually, if there’s a major fit issue, I’ll know right away. If there are other structural issues, I’ll know in a day. If the shoes are still comfortable after a couple of days, I’ll take the plunge and wear them outside.

But, first, they have to meet a number of criteria. The fat pads on my feet have thinned so much from scleroderma that I have to set a high bar:

  • Is there plenty of room in the toe box? No pinching?
  • Are they lightweight so as not to aggravate my joints?
  • Is the shoe made of materials that breathe, to avoid trapping perspiration and triggering Raynaud’s or causing skin breakdown?
  • Does my foot feel balanced, with pressure evenly distributed over the entire sole?
  • Does walking in the shoes adversely affect my knees, back or hips?
  • Is there sufficient arch support?
  • Is there a removable foot bed, so I can use my own orthotics or a good ready-made alternative?
  • Is there enough shock-absorbency, so the shoe doesn’t tire my feet or trigger the neuropathy in my right foot?
  • Can I walk without noticing the shoes? Do they fade into the background?

Then there is the question of style. I refuse to wear shoes that look like boats. Fortunately, now that so many of us baby boomers are aging, and many of us have buying power, there are a lot more alternatives for comfortable shoes that are at least somewhat attractive, even if heels are out of the question (and bad for your feet, anyway) and daintier styles lack necessary support. When I first began having these issues several decades ago, the choices were much slimmer. Now there are options, even for my particular taste.

If the shoes pass all of the above tests, then it’s time to risk a test drive around the block. None of this is foolproof. I’ve tested shoes outside, thought I had a winner, only to discover after repeated wear that they don’t work out in the long run. This has happened more times than I would like.

Which brings me to my latest acquisition, a pair of Abeo sneakers that I found at The Walking Company. I’m on first-name basis with the sales clerk, at this point. She knows my issues and really tries to help me find the right shoe. I landed on this pair after several rounds of other shoes that didn’t work out. Then I went back and upgraded the removable insoles. That combination seems to be on target.

My walk around the block on Monday in lovely sunshine was an A-. Pretty good, all things considered. While there is no pair that will make walking painless or tireless, these sneakers give me hope that I’ll be able to sustain longer walks—balanced with thoughtful pacing and rests. Staying active is simply too important to give in to all the obstacles that this disease throws in my path.

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.

Another Extraction

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So, I was hoping that my resorbing molar would hang in there at least until the summer. Not to be. After a brief hiatus a few weeks ago, the tooth began acting up, with no signs of abating. Last Monday, I realized I needed to take action, because the coming weeks are busy with Passover and travel plans, not to mention my birthday later this week, which I was not about to ruin with a toothache.

Fortunately, my periodontist was able to fit me in last Wednesday. I tried not to think about it too much in advance, and there wasn’t much time to angst, anyway. A good thing, because it is such an unpleasant experience. My periodontist is very skilled and has incredible patience, both essential to extracting a big molar from the back of my jaw when I can’t fully open my mouth due to skin that remains somewhat tight. But it’s a struggle—for both of us.

The main problem, other than simply getting all the tools in my mouth and the constant tugging at my less-than-flexible lips, was that the ligament surrounding my molar had been destroyed, thanks to scleroderma. This is the membrane that enables the tooth to wiggle when loose and be easily pulled out. Instead, as had been the case the last time I had this procedure done, the roots of my very big molar had fused to my jawbone. So he had to drill them out. Not fun. I tried to calm myself by listening to the soothing classical music in the background and focusing on my breath, which definitely helped.

Because he had to drill so deeply, it took a lot of novocaine to numb my nerves. He finally used a combination of novocaine and epinephrine, which has the advantage of intensifying the local anesthetic, but the very big downside of causing my heart to race and giving me the shakes for a while after the shot. I absolutely hate the stuff, but had not realized I hadn’t told them in advance. So that detail will go into my chart for next time.

The whole process of extricating the molar, taking an X-ray to see if he’d gotten the whole root, drilling some more, then inserting the bone graft and stitching me up again, took about two (very long) hours. Knowing it would be hours more before the novocaine wore off (my body processes anesthesia very slowly), I drove 45 minutes back to my home pharmacy, picked up medication (and was pleased that my new Medicare Part D pharmacy card works), got home, finished up loose ends of work, and then lay down with an icepack on my jaw. (Icepacks are tricky, because they can set off my Raynaud’s, but better to put up with that than have a really swollen face.)

Five days later, my jaw continues to heal. Swelling is receding. One of the stitches already fell out on its own, as expected. It’s not comfortable, but significantly improved from the nerve pain that was only going to get worse if I waited any longer. I charged the expense to one of our travel credit cards, so at least we’ll get some points from the ordeal.

I’m glad it’s over, and that it will be mid-summer, at least, before the next step of drilling and inserting the implant that forms the base for the crown. I’m also glad that the gap in my teeth is not visible, so I don’t have to look like Alfred E. Newman for the next nine months. I’m very grateful that we have the resources to deal with this, and I really, really hope that it will be years more before I have to go through it again.

And, so, another tooth bites the dust.

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: Daniel Frank

Perchance to Dream

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I’ve been having some trouble falling asleep, lately. I go through these bouts from time to time, when I’m trying to do too much and my mind is overstimulated, or when I’ve sat up at my computer too late, or when I watch too much news. Some of the solutions are obvious (plan in evening down time! no computer after 9 o’clock! don’t OD on the latest political crisis!). But I’ve also decided to use regular guided meditation in the morning to help me calm my thoughts.

I subscribe to Headspace, which is a great app with many guided meditation series to help with various issues. When I was dealing with my horrific ulcers the summer before last and the surgical aftermath, the series on pain management was a real boon. This time, I’m meditating my way through the sleep series, which includes both practical advice for good “sleep hygiene” as well as a mind-calming meditation to be done in the morning that helps you sleep better at night.

I was skeptical of how this would work, but lo and behold, after about ten morning sessions, I started to fall asleep more readily. I am less intimidated by the prospect of needing to fall asleep, which is the insomniac’s hamster wheel, and more able to relax. (Of course, now that I’m writing this down, who knows what will happen tonight?)

In any case, the meditation has an added benefit. Monday morning it was cold here, a drop from the mid-60s on Sunday to a wind-chilling mid-30s (welcome to New England). When I started my meditation, however, I didn’t have on any socks, because I’m ready for spring and didn’t feel like it. Of course, that meant my feet were ice cold. I wondered if meditating would improve my circulation. Sure enough, by the end of my ten minutes of visualizing a warm glow filling my body from bottom to top, my toes were actually a little pink. Not toasty, but not freezing, either.

Years ago, I had read how meditation could help Raynaud’s. I once even tried some biofeedback practice to see if it would make a difference, but didn’t have the patience to follow through consistently. Here was yet another reminder that the mind truly does influence the body. And ten minutes of calm in the morning certainly beats that nagging voice in my head urging me to start thinking-planning-doing.

I don’t expect my sleep issues to disappear, but at least it feels more manageable at present. And my toes are happier, 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. Please view Privacy Policy here.

Image: Cris Saur

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

Let It Snow . . . Sort Of

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It’s chilly and damp and just plain yucky outside as I write on Monday evening. I have my legs wrapped in a blanket to ward off the cold, even with the heat on in my home office. I’m wearing sweatpants and two layers of sweaters, plus my wrist warmers. Every so often I take a break to walk around and get my circulation going.

Ah, November in New England. It was brutally cold on Thanksgiving. Fortunately, I only had a short run from the car to our cousins’ front door, and otherwise stayed inside. The weather outlook this week is alternately rainy and chilly, but at least not snowy again for a while. Famous last words.

Every year, around this time, I try to stave off my winter blahs by reading the long range winter weather forecasts. It’s kind of my own version of wondering if the groundhog will see his shadow. Knowledge is power, right? If I know how cold it’s supposed to be, then I can be prepared.

Well, so far, the predictions for the Northeast U.S. are mixed. According to the National Oceanic and Atmospheric Administration (NOAA), we’re supposed to have a warmer than average winter up here. The southern states are supposed to get more precipitation than normal. You can see the whole forecast here.

On the other hand, Boston forecasters are expecting a stormier winter season, drawing on the El Niño effect and historical data. Ugh.

I know, I know. I need to get over it. Whatever comes will come. It’s just the transition is always hard. In any case, I had my snow tires put on last week. At least my car is ready.

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: Emil Vilsek