Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Deep Dive

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I began hyperbaric oxygen therapy this week. I was nervous on Monday, but for anyone considering this treatment, I can now, based on my first adventure, assure you that it’s not as scary as it sounds.

One of my biggest worries has been figuring out how to do my finger dressings using materials that are acceptable inside the HBO chamber. Based on a meeting last week with Wound Center staff, as well as the fact that I had decided to take advantage of the earliest morning option, I realized that I needed to come up with a solution that I could do the night before. Switching my dressings takes at least an hour on the days when I don’t need to change the bandages for my grafts; on the alternate days when I deal with the grafts, it can take as long as two hours.

Unfortunately, the ointments that I have been using, as well as the bandages, are off-limits for this treatment. You have to use 100 percent cotton products and no creams, ointments or gels. The gauze that my surgeon had given me for the grafts includes a petroleum ointment, so that’s a nonstarter. I’ve also observed that this dressing is creating too dense a moisture barrier on the skin surrounding the grafts, causing some of it to turn white. Not good.

Fortunately, the Wound Center staff gave me a couple of good alternatives: a silicon gauze film that is tacky but does not adhere to the grafts — a big bonus for managing the sutures. They also gave me rolls of cotton gauze to try. Sunday night was a two hour production, but I finally figured out how to provide good coverage, with some help from Al.

Unfortunately, I did not sleep well. I was uneasy, my gut was reacting to a very rich dessert that I shouldn’t have eaten, and rain was pouring outside. Finally eked out three hours, but I was not in great shape when I woke up. Thanks to Al, I got to my appointment on time at 7:00 a.m.

Understand that I am not a morning person. But going any later in the day would mean I’d have no time to get any work done in the afternoon. (The entire dive lasts about 2 hours and 20 minutes.) The hospital was quiet, and the Wound Center was not yet bustling with activity. Indeed, other than the latest headlines on one of the overhead video screens, it was actually quite peaceful. Ruthie, my tech, got the other three experienced patients ready and into their chambers, so that she could spend more time with me doing intake.

First, I had to change into hospital pants and a Johnny top. She gave me the “smallest” size they have — which would have fit at least two of me, if not three. Fortunately the pants had a good drawstring. Next, I got settled on the stretcher that fits into the cylindrical HBO chamber. It rides on a track; the stretcher is positioned at one end of the open chamber at the outset. Your head is slightly raised, and you can request a sheet and up to three blankets to stay warm. I decided on two blankets to start.

After taking my vital signs and reviewing the long checklist of prohibited materials (no, you cannot take your smart phone with you), Ruthie attached a small metal square to the inside of my wrist with a strap that covered it — this was a grounding device to avoid static electricity. Remember, they fill the chamber with 100 percent oxygen.

Following one last trip to the bathroom (ugh), I was ready to take my “dive.” They use this metaphor because once you’re sealed inside the chamber (glass top so you can see out and around), pressure increases as if you’re doing a deep ocean dive. This was the hardest part for me. Both my eustachian tubes are partially blocked, chronically so, and the increasing pressure was at times painful. Ruthie kept talking to me via a telephone receiver, guiding me through the process and explaining how to pinch my nostrils and blow through my nasal passages in order to ease the pain. I had an odd side effect (naturally): as the pressure increased on my ears, it made me dizzy to speak.

Finally, after maybe 20 minutes, I got through the pressure change and reached equilibrium. At this point, I was receiving 100 percent oxygen. It is very easy to breathe 100 percent oxygen. Ruthie turned on the DVD player with my CD book, a collection of linked short stories by Alice Munro. I was pretty drowsy, and the first disc was not as engaging as I’d hoped, so I dozed a bit. By the second disc, the storyline had picked up, and I was feeling more at ease, not minding the occasional vibrations of the chamber or sense of confinement.

Al stopped by a couple of times — before he started work for the day (he’s a social worker at the hospital) — and a couple of hours into the dive (he greeted me on the phone receiver with “Hello, Cookie Dough!). To my surprise, it was soon time to reverse the pressure, which took about another 15 to 20 minutes. This time, my ears didn’t hurt, although they bubbled and crackled, which is apparently quite normal.

I was relieved when Ruthie pulled my stretcher out of the chamber. “I survived!” I exclaimed. “You did!” she answered. All three of the other patients had come and gone, there were new patients in the midst of their dives, and the place was hopping. I got changed and then spent another hour in a private changing space that wasn’t in use, redoing all of my bandages with my normal silver alginate dressing, creams as appropriate and bandages. My fingers looked nice and pink. They paged Al for me, and he took a break from work to drive me home and set me up for lunch, because I was pretty tired by this point.

An hour’s nap helped, and then I found my way back to my computer to do some writing and editing. I get to do it all over again the rest of the workweek, for the next six weeks — but, I sincerely hope, with much improved sleep. Onward.

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 Talley

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

Holy Grail

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For more than a year, I’ve been trying to figure out how to get a high-end wound dressing called Hyalomatrix Wound Device. Several years ago, my podiatrist gave me a sample while the product was still in development by researchers in Italy. This dressing contains hyaluronic acid, which occurs naturally in the body and aids in formation of new skin. I had tried using it very successfully on an ankle ulcer that had refused to heal. It was the only thing that worked.

I have only a tiny bit left of that sample, which I’ve been rationing on my six deep digital ulcers. Once again, it seems to be the one thing that is helping my skin to regenerate as the large scabs very slowly recede. So, I’m anxious to get my hands on some more (or rather, some more on my hands).

For reasons unknown — perhaps I wasn’t persistent enough, or perhaps Medline, the company that manufactures this product, updated their website only recently — I could not find a way to reach a human being at the company who could tell me how to order it. That is, until last week, when I finally figured out how to get through. I spoke both to catalog sales as well as their home care team.

When I say this product is high-end, I’m not kidding. Although they wouldn’t give me an exact price over the phone, they also would not sell it to me because it costs in the four figures, and that certainly exceeds my budget, as well as the company’s ceiling for direct sales to individuals. I need to get it via a prescription. This led me to call my insurance company to see if they would even cover it. To my surprise, the service rep thought it might be possible – but I would need prior authorization.

So this created the next challenge: which of my docs to ask? The most obvious starting place was the vascular surgeon at the Wound Care Center who has seen me twice since May. She is a great physician, very supportive and knowledgeable. However, despite my best efforts, which included sending her detailed information about the wound care product, research backing it up and a prior authorization form, for reasons that I still don’t understand, she handed me off to the Wound Care Center and would not submit the form on my behalf. Honestly, I think she was too busy to actually read what I asked her to do. The Wound Care Center staff looked into it and discovered that their supplier does not carry this particular product. Dead-end.

I was certainly not about to give up. So Monday afternoon, at a previously scheduled appointment with my Boston Medical Center rheumatologist, I shared my digital ulcer saga and all the information. He was glad to go ahead and submit the form and write me a prescription if I get approval. I also asked him to please ask for an expedited review, to avoid the average 15-day wait for a response from the insurance company.

We have known each other for several decades, now. So much of getting what you need depends on good, long-term relationships with your health care providers. Fingers crossed (at least, metaphorically) that I’ll get approval and be able to fill the prescription ASAP. To be continued . . .

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.