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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Fingers Crossed

Evelyn Herwitz · November 21, 2017 · 2 Comments

So, now things get a little more complicated. Last Thursday, when the Wound Center team checked my progress, the vascular surgeon thought that my left middle finger tip was colonized by an opportunistic bacteria common in wounds called pseudomonas. What I had taken to be some incidental spots had turned a pale green, which she said was a tell-tale sign. No pain or other issues, so I did my dressings and then checked it again that evening. It seemed to have spread more across the upper layer of the graft, which is dead skin.

Next day, I told the team, but no ID specialist was available to look. So, they scheduled a visit with the covering doc (mine is, of course, away for the week of Thanksgiving) for Monday morning. Meanwhile they recommended soaking the tip in a medical grade bleach. After just a minute, I was able to remove all of the green growth with a cotton swab. Powerful stuff.

They gave me some to take home and use again on Sunday. This time, nothing came off, and I couldn’t really tell if the discoloration was white or something else. Monday morning, I came in a little later for my HBO therapy, as planned, to give the ID doc time to look at the finger before my dive.

However . . . due to some miscommunication, when paged he said he’d never seen me before and didn’t know why he was being asked to consult, and went ahead with regular appointments. Aargh! More calls back and forth with the nurse who’d set up the appointment for me, and she got him to come later, after my dive. Of course, the wait took an extra hour.

He was apologetic when he came, very nice, thoughtful, accompanied by two students. However, he could not give me any firm answer about what may or may not be discoloring my graft. Only way to really know, he said, would be to debride the finger and do a deep tissue culture—which, of course, would mean removing the graft. And antibiotic treatment at this point could involve IVs, which I really don’t want. Not going there, not now, we agreed. Better to stick with the bleach and keep close watch. So long as I don’t have pain, any redness from cellulitis, swelling or fever, there’s no reason to do more.

After he left, the nurse suggested checking if I could see my hand surgeon before the holiday, to get his input. Fortunately, since they know me well in his office, his medical assistant squeezed me in for Tuesday afternoon, the only day he’s in this week. Good relationships really count.

I was not in a great mood Monday afternoon. But then I took a step back. After all, a surface culture on my opposite middle finger, the one that was actually weeping goo a couple of weeks ago, had tested positive for pseudomonas, and nothing came of it. The antibiotic I’ve been on, true to my ID specialist’s prediction, took care of the infection.

Plus, my open wounds were growing all sorts of stuff prior to my first surgery, as demonstrated by cultures done at that time. None made any difference in my outcome. Best to keep vigilant and monitor symptoms rather than fret over what-ifs, or do unnecessary procedures that would make matters worse.

I’m just grateful that I’m being monitored so closely by experts and not dealing with this all on my own. I’m also grateful that I continue to make more progress—this past week, I was able to fill my car with gas, lift a mattress to make a hospital corner, stir onions in a pan on a hot stove, and begin to write by hand again. That’s what I’ll be focused on this Thanksgiving.

And so, Dear Reader, I hope you have much to celebrate this holiday, as well. And for all of us, here’s to good healing and good health.

P.S. I’m happy to report from my Tuesday appointment that Dr. S thought my finger was fine. He said that grafts are “biological dressings” that protect new skin growing beneath. Not surprising that something could grow on the surface, as well. Given no worrisome symptoms of an infection, I should just keep doing what I’m doing. Other fingers continue to look good, in his opinion. Thank goodness—and it pays to remember that specialists know their specialties but can misinterpret what falls under another’s specialty! Seventeen dives and counting.

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: Nathan Anderson

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Filed Under: Body, Mind, Sight, Touch Tagged With: finger ulcers, hand surgery, hands, managing chronic disease, resilience, wound care

6 Down, 24 to Go

Evelyn Herwitz · November 7, 2017 · 4 Comments

I finished my sixth hyperbaric oxygen (HBO) dive on Monday. Already, it’s becoming routine. But getting to that point took all of last week. Here are some lessons learned, so far:

  • It’s really important to have some meaningful entertainment when you are confined to your back, lying inside a glass-and-steel chamber for 2 hours and 20 minutes. I decided to immerse in the best fiction writing I could find at the library. Toni Morrison’s A Mercy, narrated by the author, proved to be the perfect choice. Her language is magnificent, and her artistry is both an inspiration and a thought-provoking guide to revising the first draft of my novel (finished in late winter, incubating since then due to all the hand mishegas).
  • Definitely go with a light breakfast for an early morning dive. I do not want to have to take a bathroom break in the midst of the dive—that would either truncate the day’s session or require a second dive/reverse of pressure. Too anxiety-provoking.
  • Meditation breathing really helps to counter claustrophobia. During my third dive last week, I suddenly began to feel trapped in the chamber. Focusing on my breath enabled me to calm myself and focus on the audio novel.
  • Bring a granola bar or other healthy snack for after the dive. I have yet to do this, but I realize it would be a good idea. I’m very hungry when finished, and I still have to spend nearly two hours redoing all my dressings. The dive increases your metabolism rate.
  • Ear tubes—which I had inserted on Friday—definitely ease the pressure on eustachian tubes during the dive (in the first 15 minutes or so, pressure in the chamber increases to 2 atmospheres, the equivalent of being 35 feet below sea level). However, the tubes have also caused some additional muffling of my hearing, to my dismay. My right ear cleared a bit over the weekend, so I no longer sound to myself as if I’m talking under water. But my left has yet to clear, and I can hear my pulse in my left ear.
  • Sometimes I am very energized when I come home, and other days, I need a nap. No clear rhyme or reason. But I have been able to put in a productive afternoon of work every day, so far.
  • The therapy works.
    • Exhibit A: I have had an intractable ulcer on my left inside ankle for almost a year, which had mostly healed over the summer, but was persistently flaking and threatening to reopen. After two days of HBO, the skin was completely healed. Miraculous.
    • Exhibit B: The donor site for my skin grafts on my right thigh shrank by about 50 percent last week. I was finally able to flake off the very dry scab Sunday, which had become quite itchy.
    • Exhibit C: My finger pain has decreased even more than it had from just the grafts. I am now able to drive again. The vibrations of the steering wheel no longer hurt my fingers. I put this to the test on Sunday and was able to drive us to a wedding over an hour away, and back. First long-distance highway drive since July.
    • Exhibit D: My health care team unanimously thinks my grafts are healing well. I spiked an infection in my right middle finger, so am back on antibiotics. But it appears to be healing again, thank goodness.

Tuesday morning is Dive Number 7. I plan to vote in our local elections on my way home. I’m grateful that I feel up to it. Whatever your health circumstances, I hope you do, 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.

Image Credit: The HBO chamber I’m using looks a lot like this image from Long Beach Medical Center in Long Beach, California.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, hyperbaric oxygen therapy, managing chronic disease, mindfulness, resilience

So Far, So Good

Evelyn Herwitz · October 24, 2017 · 2 Comments

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hand surgery, hands, managing chronic disease, resilience

Next Steps

Evelyn Herwitz · October 10, 2017 · 4 Comments

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

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hand surgery, hands, managing chronic disease, mindfulness, Raynaud's, resilience

Thoughts and Prayers

Evelyn Herwitz · October 3, 2017 · 2 Comments

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

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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