Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Raynaud's

Low-Tech Solution

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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.

Short Is Beautiful

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I’m down to two bandages on my fingers—one on each thumb—and it’s the end of February. Highly unusual. Friends have commented to me in recent weeks that my hands look better than they’ve seen in quite a while. That’s saying a lot, considering how the hand surgery reshaped my fingers.

I have a theory, and it’s based on a conversation that I had with one of the hand surgeons who examined me last August. I’ve noticed over the years that my right index finger, which was significantly shortened decades ago to correct a severe flexion contracture, rarely—if ever—gets an ulcer. I wondered aloud if the fact that it’s shorter somehow made a difference.

The hand surgeon confirmed my suspicion. A shorter finger means that the remaining blood vessels serving that finger are larger in diameter. That’s because blood vessels become wider toward the base of each digit.

I’ve had chronic ulcers in my finger tips for many years since they receive oxygen via the most damaged, narrowest capillaries, which can only provide a reduced blood flow. If what’s left, post-surgery, are the larger diameter blood vessels, then blood flow to the shortened fingers is improved.

I’ve lost the tips of three fingers. I’ve also lost two knuckles, which were the other problem areas in my hands. Essentially, now that the most frequently damaged parts of my fingers are gone, it appears that what’s left has better circulation.

Who knew?

Of course, now that I’ve written this, I have a nagging fear that I’ve jinxed myself. There’s a long way to go with the see-saw temperatures of late winter and spring, my worst season for ulcers. That’s when all the trouble started last year.

But at least, for now, I can enjoy the fact that I only need to bandage two thumbs—always sensitive at the tips where there is a motherlode of calcium pits under the surface. It only takes about 10 or 15 minutes to take care of them in the morning and evening, a far cry from the two hour marathon sessions over the summer for so many painful ulcers as my hands deteriorated.

Fingers crossed—what’s left of them, anyway—that my hands will remain in relatively good shape as the temps ebb and flow over the coming spring. Meanwhile, I’m stuffing 10-hour heat packs into my wrist warmers every cold day to stack the odds in my favor.

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: Joel Filipe

Maiden Voyage

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Hallelujah! I can drive again long distance on my own. Last weekend’s hour-plus experiment with Al as my backup gave me the confidence to try going it alone this week. So on Friday, after finishing up my morning HBO therapy, doing all of my bandages and putting on my makeup (not allowed inside the chamber), I drove an hour into Boston to see my favorite hairstylist for a good cut.

Now, to some it may seem silly to drive that far just to get a haircut. However, this stylist has been doing my hair for more than 15 years, beginning when I was commuting to work near Boston. She is very gifted, precise and understands exactly how to make me look my best. Given the way that scleroderma has changed my face over the years, having a great haircut is much more than an indulgence. It is one of the few ways that I have control over my appearance. I always walk out of the salon feeling wonderful.

The last time I had seen her was 10 weeks ago, more than twice the amount of time that I usually allow to lapse between visits. That trip was courtesy of my younger daughter, who was in town for a visit and drove me in for my appointment, four days after my first surgery. I wasn’t even sure until the night before that I would be able to make it, but was very glad I did.

Now, more than two months later, my hair was flopping, unruly and difficult to manage. Whenever I looked in the mirror, I felt that I looked old and weary. The hand ordeal was taking its toll.

Thank goodness for the HBO therapy. After 10 dives, not only are my grafts healing, but also my energy level has improved significantly, to the point where I felt confident enough to make an appointment. Originally, I had planned to take the train to Boston—time consuming and pricey, but still a good option. Then, when I realized last Sunday that I could actually handle the car on the highway again, I was determined to drive into the city.

Complicating my plan was a cold snap. We’ve been enjoying unseasonably warm weather here in Central Massachusetts, but late fall returned with a vengeance at the end of the week with a freeze overnight and 30°F temperatures, plus stiff winds during the day. I didn’t care. I added extra layers and figured out where to park that would enable me to take a break from the weather on the way to the salon by eating lunch at a favorite restaurant.

My visit did not disappoint. My stylist, who is one of the only women I’ve ever met who looks fantastic with magenta hair, gave me a hug and set to work, skillfully trimming at least an inch, reshaping my graying mop. As she snipped, we caught up on health, family and life in general. When she finished putting the last hair in place, I was grinning. What a relief! I felt like myself again.

The 10 minute walk back to the car was bitter cold, but I was glad that I had driven and not taken the train, which would have required waiting on a very cold platform. The drive home in rush hour on Friday afternoon was long and tedious, and I was happy to walk into our warm house, where Al was preparing Shabbat dinner. I had to lie down for a half-hour, because I was very tired, and my hands were a bit uncomfortable from all the driving in stop-and-go traffic.

But it was well worth it. I no longer feel that I look like a patient. I no longer feel confined.

On Sunday, I drove into Boston again, this time for brunch and a movie date with my eldest daughter. We had a great time together, and when I came home, I still had plenty of energy to sit down at my computer and write this blog post. On Monday afternoon, I will get in my car once again after my HBO therapy and drive into Boston to see my rheumatologist at Boston Medical Center for the first time since my second surgery. The last time I saw him, after my first surgery, Al had to take off from work to bring me. Now, I can do it myself.

Despite all this progress, I know I can’t overdo. Three round trips in four days is plenty for the next week. Driving after the hyperbaric chamber is more tiring than driving on the weekend when I’m rested. Still . . . it feels really, really good.

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: Alex Iby

Next Steps

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It’s been muggy and drizzly and rainy as Nate sweeps through New England this Columbus Day. Not much left to the storm, fortunately for us. And good weather lies ahead for the next few days. I spent the afternoon getting as much work done as I could, because I’m facing more hand surgery a week from today.

I wasn’t expecting this to happen so soon. Indeed, I have been savoring regained abilities. My big accomplishment last week was running an errand after a doctor’s appointment, something I haven’t been able to do since before my first surgery at the end of August. I even went for a massage, a most welcomed treat.

But my hand surgeon, Dr. S, told me we need to move ahead with the skin grafts on four of my fingers, the ones with the largest open wounds post-debridement, because there is a limit on how long the two stabilizing pins in my right pinky and left index finger can remain. My Boston Medical Center rheumatologist agrees that the grafts are worth trying. Dr. S says he will know if the grafts take when he looks at my fingers three days after the surgery. If the grafts don’t work, he wants to give the skin more time to heal on its own before going to amputations. That is, of course, the last resort.

So I went ahead and sent in the insurance appeal for the hyperbaric oxygen treatment last Friday. Asking for a peer-to-peer review. We shall see.

I also decided not to go with Botox shots in my hands, despite Dr. S’s recommendation. The research just doesn’t give me enough confidence in the procedure. In particular, I found a study published this summer in Arthritis & Rheumatology—randomized, double-blind, placebo-controlled, funded in part by the Scleroderma Research Foundation—of scleroderma patients who had undergone Botox injections in one hand and saline in the other as a control. One month out from the treatment, the researchers found a statistically significant decrease in blood circulation in the Botox-injected hands—the exact opposite of the intended outcome. In addition, other research I found indicated that about a third of Raynaud’s patients who undergo Botox injections in their hands experience paralysis that lasts from two to four months. No thank you.

Instead, I’m going to boost my hand circulation with a low tech solution: hand warmer packets inserted into my wrist warmers.

I don’t relish going under the knife again. But it’s also better to just get it out of the way while the weather is still relatively warm. I’ve switched my daily guided meditation (highly recommend Headspace) from pain management to stress management. I’m looking forward to a movie date with Mindi the day before surgery.

I will be taking a break from blogging next week, given timing of the surgery, and will report in when I’m up for sitting at the computer again. Until then, I wish all of us peace and healing.

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: Isaac Benhesed

Im-patient

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One week and counting since my hand surgery. On Tuesday afternoon, we will meet again with Dr. S to review status and plan next steps. Contrary to my initial euphoric reaction to seeing that I still had 10 fingers when I woke up from the operation last Monday, I soon realized, when changing my dressings, that the situation was much more complicated.

I have temporary pins in the two fingers I thought I was going to lose, not permanent ones. I’m hoping that Dr. S has received helpful, wise feedback from the other hand surgeons on his listserv, but I am not optimistic that he will be able to save those two fingers. Like I said, it’s complicated. At the very least, he bought me time for a thorough review.

In short, he did exactly what he said he would. He stabilized my hands for the next phase. It’s a real relief to have the protruding tips of bone removed and the two broken fingers no longer flopping when I bandage them. I have six open wounds to dress every day. It takes about two hours and is very tiring, sometimes quite painful. Al is a great help, as always. I have certainly shed plenty of tears as I have tried to come to terms with everything. And he has given me plenty of good hugs.

It’s been an emotionally and physically draining week, especially when I realized the pins were temporary. Thank goodness for family and friends who have been a tremendous support, with meals, visits and phone calls that have given me a big boost.

But I wish it were over already. I wish that I could visit the original Star Ship Enterprise, go to Sick Bay and have Dr. McCoy wave that magical tricorder over my hands to heal them immediately. He was my favorite character. If wishes were fishes . . .

In addition to seeing Dr. S on Tuesday, I have an evaluation on Thursday at the Wound Center for hyperbaric chamber treatment that may accelerate the healing process. Dr. S had also mentioned the possibility of giving me Botox shots in my hands to block the sympathetic nervous system response that causes my blood vessels to contract so quickly and uncomfortably from Reynaud’s. Apparently, the shots would last three months and carry me well into the winter with warmer hands, another boost for healing.

So that is what I must focus on. I have stopped watching the evening TV news and only read or listen to thoughtful podcasts to keep up with current events. I figured out how to prop up a book and use a stylus to help me turn pages—a major achievement and relief to begin reading again. I am building up my stamina to sit at the computer for a couple of hours a day, so I hope to be able to get some client work done this week. I have cut back on the Vicodin to one pill at night. It causes crazy dreams, sometimes very scary, so I hope to be free of that soon. Each day brings small victories that deserve celebration and gratitude. No Dr. McCoy, just the hard reality of slow and (I hope) steady healing.

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: DeForest Kelley as Dr. McCoy from the original Star Trek, Wikimedia Commons