Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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

Thoughts and Prayers

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I woke up Monday morning to read the tragic, depressing news about the mass shooting in Las Vegas on Sunday night. And to read the inevitable comments on social media, news analyses, and verbal throwing of hands in the air, how will we ever stop this scourge? Lots of tweets and Facebook posts about sending thoughts and prayers to those affected by the tragedy, as well as criticisms of “thoughts and prayers” as being enough already. Time for action to end what has become a major public health crisis in this country.

I felt myself sinking into the morass. There must be a way for us to come together as a country and solve this. I wish I had the answer. I don’t. But I want to put in a word for the value of thoughts and prayers.

Thoughts and prayers are not a passive pursuit. Indeed, thinking — as in imagining what it is like to have been the victim of a tragedy — is one of the most important first steps any of us can take to get past the divisive rhetoric surrounding this issue and move toward finding common ground. Empathy is an essential virtue.

Prayer is a meditative way to direct those thoughts toward healing, dialogue, problem-solving. It is a means to focus energy toward the greater good. It is also a means to short-circuit knee-jerk reactions, accusations, epithets —  everything that distracts from the hard work of reaching consensus.

I have been the beneficiary of many thoughts and prayers from family and friends over these past few months as I have been wrestling with my hand issues. I genuinely believe that all that positive energy has helped me to find strength. Many caring messages have brightened my days.

So I don’t believe that thoughts and prayers are waste of time, on either a personal or communal level. Thoughts and prayers alone, however, are not enough. Not to solve a problem as big as the one our nation is facing.

Here is a link to one of the best articles I have seen that explains why our country is so mired in the debate over guns, even as we actually agree on more than headlines and raging pundits would allow. I hope it gives you some clarity as you wrestle with this issue in your own way:

 Gun Violence in America, Explained in 17 Maps and Charts, Vox 10-2-17

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: David Monje

Sticking Point

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Now that I’m starting to get back into a regular schedule, it’s a relief to be able to focus on work and other writing, and forget about my hands for a few hours. They do have a way of reminding me, however, that they need attention. As in beginning to tingle and twinge within a half-hour of time to take my pain medicine. Who needs to set a cell-phone alert? It reminds me of how our dear departed golden retriever, Ginger, used to bop my fingers off the keyboard with her nose when it was time to take a walk.

I wish it were still her, and not my fingers, calling the shots. One of the hardest aspects of this whole ordeal is simply having to accept the fact that I cannot escape it. I can’t make my fingers heal any faster than they are able. I’m certainly not going to cut them all off. And I’m not about to roll up in a ball and hibernate until it’s over. I can only sit with it, minute by minute, hour by hour, day by day.

I boost my spirits by celebrating small victories — the ability to make a few notes by hand, regained stamina to sit at my desk for another hour, a creative solution to cracking an egg and separating the white from the yoke without messing up my bandages.

Scleroderma is a disease that makes you feel stuck in your own skin. I remember that sensation all too well from the early years when my illness was still in a very active phase. About three decades ago, my skin had tightened halfway up my forearms, and I was beginning to have discomfort blinking. The veins were not visible on the backs of my hands. My skin felt like leather that had been wet and then dried in the sun. It was terrifying. Mercifully, treatment with D-Penicillamine, since discredited in the research literature (but I am convinced it saved me), reversed the tightening. Although my skin is not normal, it has been decades since I’ve felt so trapped within it.

Now, I feel stuck in a different way — stuck in what feels like an endless cycle of doctors appointments, dressing changes, pills upon pills, and the sheer inability to do what I want to do the way I want to do it. That, plus the discomfort and pain that is just what I have to live with for who knows how long. It is very frustrating. Meditation and good, healthy distractions, like getting back to my creative writing, are among the best solutions. Hugs from Al help a great deal, too.

When I dip into the news, a practice I am trying to limit to reading reliable sources and listening to thoughtful podcasts in order to keep my sanity, I feel a different intensity of stuck-ness. How is it possible that we are actually seriously discussing the possibility of nuclear war with North Korea? What can any of us do to stop it? I can still remember Cold War air raid drills when I was in grammar school, kneeling between classmates in the school hallway with one hand under my forehead and the other on the back of my head. As if that was really going to save any of us from the A-bomb. The fact that reckless, macho-on-steroids quips and put-downs are defining this path we are on, rather than serious diplomacy, boggles the mind.

In a very strange way, my hand saga provides a welcome distraction of stuck-ness from all of this. How ironic. At least, when it comes to my own health, I have some degree of control over the outcome. God willing, the adults will take charge and walk us all back from the brink of an unthinkable fate.

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: Nick Abrams

To Appeal or Not to Appeal

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I’m pleased to report, three weeks post hand surgery, that I’m making small progress every day. I’m able to sit at my computer for most of the afternoon, and it’s been great to catch up with my clients and focus on projects instead of my hands. I drove short distances twice last week — to two separate medical appointments. My hands were tired afterward, but it was wonderful to feel that I had some independence again. This Tuesday afternoon, Dr. S removes the sutures in two of my fingers, which have been driving me crazy. Hoping this will help to relieve some of the chronic pain that I’ve been experiencing.

However, last Thursday I found out that I was declined for the hyperbaric oxygen therapy, otherwise known as HBO. It wasn’t a big surprise, because the criteria for insurance coverage are very narrow and specific, unless you have a diagnosis of diabetes. Which I do not.

I’m not sure what to make of this. The chance of improving the odds for healing pre- and post-skin grafts — the next step in my surgery — is certainly very appealing. At the same time, the huge time commitment that this therapy requires is daunting. As I mentioned in a previous post, it involves spending three hours a day, five days a week for six weeks, lying in a large chamber with a clear cover, during which time you are exposed to 100 percent oxygen to boost healing.

Although I am not claustrophobic most of the time, I have my moments. I’m only 5’2″ tall (actually a little less than that now, as I’ve started shrinking), and being amidst a large crowd can really spook me, because I can’t see over people’s heads. I’ve also had some uncomfortable experiences when I’ve had MRIs. One time, I had to press the panic button because I was starting to feel lightheaded by being so confined.

I have no idea if appealing the insurance company’s decision will make a bit of difference. Highly doubtful.

And yet . . . I don’t like the idea of giving up without a fight. I found a current research study in the International Journal of Dermatology that had very encouraging results for healing scleroderma ulcers using HBO. The only problem, as with so much scleroderma research, is that the sample size is so small — only six subjects. But every one of the subjects experienced improvement. So I sent the study along to the Wound Center, which has been handling the insurance inquiry, and I need to follow up with them.

Meanwhile, it’s time to prepare for Rosh Hashanah, which begins Wednesday evening. Al is my sous chef, with help from Emily, as well, come Wednesday. We look forward to gathering with family and friends for a festive meal to welcome in the Jewish New Year. This past year has brought some of the greatest health challenges that I have ever faced. Whether you celebrate or not, whatever your tradition and faith, may all in need of healing be blessed with improved health — physical, mental and spiritual.

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: The Lærdalstunnelen, 24.5 km, world’s longest road tunnel, from our Norway trip. There are beautiful blue lights at three intervals to break up the monotony, and, I suspect, to ease claustrophobic fears.

Hurricane Season

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Harvey, Irma, José, Katia. It’s only September, and we’re already almost halfway through the alphabet, reeling from two of the most destructive Atlantic hurricanes on record. Recovery from Harvey in Texas and Irma in Florida and the Caribbean will take months, maybe years. We send thoughts and prayers, open our pocketbooks to support those in need, and worry. Where will the next killer storm make landfall? What’s next? Will we and our loved ones stay safe?

I once stood in the eye of a hurricane. It was a Monday, August 19, 1991. Al and I had taken Mindi, then almost 3, to Block Island for the very first time. We had heard wonderful things about this lovely place off the Rhode Island coast and were enjoying the little cottage we had rented and a great day at the beach the Sunday we arrived. This was, of course, before cell phones, wide access to Internet, and all the news-gathering outlets that we now take for granted.

We had decided to avoid TV for our time away from home. So we did not know anything about Hurricane Bob, a Category 3 storm that was heading our way. That is, not until our rental agent knocked on the door late Sunday and told us that Bob was expected to pass directly over the island the next day. We had a choice: to wait it out in the cottage or go to the local school that was serving as a shelter. We chose the latter.

Al entertained the children around us in the shelter by playing his recorder, and I have vague memories of making origami animals for Mindi and the others. It was crowded and humid in that gymnasium, but people remained good-humored, for the most part. Sometime in the early afternoon, the eye of the storm passed directly overhead, and we went outside to look. The sun was shining, the sky was blue, and it was quite peaceful and refreshing. As the sky darkened and the wind picked up, we retreated to the gymnasium to wait out the rest of the storm.

Later, we went down to the shore to check out the damage. Beached sailing yachts, broken tree limbs, and much fascinating detritus had washed up on the sand. Fortunately, our little cottage suffered very minor damage, just a few leaks. Most of the vacationers went home, and we had the island mostly to ourselves the rest of the week. Sometimes, ignorance is bliss.

A few days later, I realized that my period was late. After five months of infertility treatments that involved artificial insemination with Al’s sperm (the least romantic way to make a baby), we knew that I might actually be pregnant. Giddy with excitement, we brainstormed names beginning with the letter B. This was our first glimmer that Emily (we gave up on B names) was on her way.

I was remembering all this family history on Saturday afternoon, as Irma hurtled toward the Florida coast, and Al and I were taking a hike in the woods. He had convinced me to get out of the house and into the great outdoors. It had been an emotional week. My head was swirling. Last Tuesday, Dr. S informed me that he thought skin grafts could work on my fingers. This was completely contrary to initial assessments by him and the first hand surgeon I saw. Such good news. No guarantees that it will work, but he wanted to try before going to the extreme of amputation.

Then, on Thursday, we met with the vascular surgeon for an evaluation for hyperbaric oxygen therapy to accelerate healing. What I did not know was how intensive this treatment is: three hours a day in the chamber, five days a week, for six weeks. As the doctor explained, it’s like a part-time job. As of yet, we do not know if I will qualify for the insurance coverage, because the criteria are quite narrow and specific. But the Wound Center staff are doing their best to see if I can get approval. Then I have to figure out if I am really up to doing this. The prospect is scary, but if it could help save my fingers, then I need to give it serious consideration.

Like I said, my head was swirling. What if the grafts don’t work? That would mean a third surgery and amputation. What if I’m too claustrophobic for the hyperbaric oxygen therapy? How am I going to do that and keep up with my client work? Freelancers don’t get sick pay. How many more surgeries am I facing? How long am I going to feel incapacitated and so dependent upon others to do even the most basic things?

On Monday, my mental hurricane decreased in intensity. For the first time since early August, I was actually able to drive my car a short distance. First, I drove around the block while Al waited for me in the driveway. Then I took my maiden voyage to the hospital, a 15 minute drive, for an appointment with my infectious disease specialist. As we reviewed my antibiotics and discussed plans for the next operation, he looked a bit skeptical. He wondered aloud if I had contacted my rheumatologists to see what they thought about the potential success of skin grafts. I had not. But I will before proceeding. Had I not been able to drive myself to and from the appointment, his question would have set my head spinning again.

As it was, I drove home. I was able to use my key to lock and unlock our door. I was able to take the mail out of our narrow mailbox. I did not need a nap. I was able to get some client work done. I wrote this blog. And I did not hurt my fingers, even as my hands were tired and a bit achy from the excursion.

I do not know how much worse this is going to get. I do not look forward to more surgery or intensive treatment in a hyperbaric oxygen chamber, assuming that’s even possible. I do not look forward to months and months of healing. Perhaps I was just standing in the eye of the storm on Monday. But it felt 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: NASA/NOAA/UWM-CIMSS, William Straka