Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

So Far, So Good

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A week has passed since my second hand surgery, and I’m pleased to report that I am bouncing back more quickly than I expected. Skin grafts are healing well, and my appeal was approved for hyperbaric oxygen therapy.

It’s been quite the ride. For the first few days, my hands were protected by huge padded splints that went halfway down my forearms. My pain level was quite manageable, thank goodness, but I could not do a thing for myself.

You really don’t realize how much you depend on your hands until you can’t use them at all. I felt like a baby. Al did yeoman duty, feeding me, wiping me and washing me, all with patience and good humor. He is a good man. We were both blessed and energized by caring friends who brought delicious home-cooked meals all week, and by many prayers for healing and kind wishes.

Everything changed on Thursday, when Dr. S removed the splints. He checked the graft on my left middle finger (he deemed it good) and the flap of skin that is now sealing my right middle finger (also deemed good). The other two grafts he left alone for inspection on Monday. But I had my hands back.

As soon as I came home from my appointment on Thursday, I was able to sit at my computer and get some work done. Even as I was tired, it was a tremendous relief to be able to use my hands again, with care, and regain some independence. I’m not ready to drive, yet, but I hope to as soon as I feel confident that my grafts have stabilized.

When Dr. S checked the grafts on Monday, he was more than pleased. The skin was nice and pink, a major accomplishment, given my poor circulation. I’ve been keeping my hands warm using heat packs on my wrists. Since I can’t put on my wrist warmers right now (bulky bandages), I have been wrapping the heat pacs into ace bandages around each wrist. Works just fine.

I still have two pins in my left index and right pinky. These will come out soon. Monday afternoon, I had smaller splints made to stabilize the three grafted fingers as they heal. I’m still figuring out how best to care for the “donor site” on my right thigh, a two-by-four-inch rectangle where a thin layer of skin was removed for the grafts, but it appears to be healing slowly.

Also on Monday, I got the green light on my hyperbaric oxygen therapy appeal. This was especially surprising, because our health insurance had called the end of last week, claiming that we had never applied for prior authorization, so no appeal was appropriate. I referred them to our hospital wound center contact who had, indeed, filed the request that had, indeed, been declined. I also explained that the HBO would probably save them money because it would spare me more surgeries, if it works. That argument may have done the trick, because they never even bothered with a peer-to-peer review. In any case, I start next week.

It’s a lot to absorb. I’m extremely grateful that my wounds, now covered with my own skin, are less painful, and that the risk of having skin grafts has been, so far, worth taking. One step at a time. . . .

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.

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

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

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