Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Sideways

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I had my first visit with my new occupational therapist last week and learned a few things. I learned that it takes about 18 months for your nerves to rewire after the kind of surgery I’ve undergone on my hands—but that most of the change happens in the first 6 months. I learned that my skin grafts will never have full sensation, although I can sense more than I realized. And I learned that I’m not imagining how the skin flap on my middle right finger is sending confusing signals to my brain about what I’m actually feeling and how my finger is oriented. More on that in a minute.

My OT works in my hand surgeon’s office, so she has a ton of expertise when it comes to my specifics. This is a great blessing. She explained that even if some of my nerves don’t regenerate, others may learn to compensate. To get a baseline assessment, she had me lay my hands outspread (as much as I can) on the table, palm down and then up. I had to close my eyes while she tapped different spots on my fingers with a series of plastic filaments, from a hair’s breadth in width to the thickness of a pencil lead. When I felt something, I let her know.

This took a while, but what we discovered is that my ability to sense touch is better than either of us expected (a good thing) and that my grafts have both deep pressure sensation and the ability to detect heat and sharpness (a very good thing). So, at least, I should be able to avoid burns and serious cuts. It’s not a free pass, but reassuring.

My right middle finger, in turn, has good sensation except for the flap’s seam. Basically, skin on the right side of that finger is now folded over the top and connected to the left side, with the top third amputated. It looks odd and stumpy, but it works well enough. What’s curious is how I think I’m still touching objects with the side of my finger when I’m actually feeling with what is now the rounded tip.

My OT explained that the nerves in what used to be the side of that finger are specialized, and my brain is still registering sensation as if my finger is moving sideways. Combine this with the fact that the finger is now a third shorter than it used to be, and it’s no wonder I can’t quite figure out where it is relative to objects I’m touching. Fortunately, she said, this will resolve with time as my brain rewires. Fascinating.

More sessions to come over the next few weeks as I learn how to use my hands again. My homework is to practice curling what’s left of my topmost knuckles before I bend my lower knuckles to approximate a fist. That way I achieve more of a grip. I’ve discovered that it helps to practice this while holding the steering wheel of my Prius, which is thick and padded and just about the right curvature.

Mostly, however, I need to be more mindful of how I reach and manipulate objects. I suppose this will become second nature with time. But it doesn’t hurt to bring a sense of purposeful awareness into simple movements. A good lesson there, 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: Hunter Harritt

New Year, New Hands

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Last Thursday, I finished my 40th dive in the hyperbaric oxygen chamber. My grafts have healed. The Wound Center staff gave me a “certificate of completion” decorated with pictures—a fountain pen and typewritten words, a graphic for all the podcasts I listened to while bandaging up my fingers after my dives, an image of a Fig Newton, my favorite post-dive snack. Everyone signed with good wishes. I promised to come back and visit.

It seems amazing to be through. I still have bandages on my thumbs—the right as it continues to heal and the left, to protect a chronic pit that waxes and wanes. I’m moisturizing the grafts during the day, leaving them exposed to the air so the skin toughens up but remains pliable. I’m learning to interpret the sensations from the flap on my right middle finger. And I’m touch-typing away, thank goodness.

Christmas weekend, I took my daughters to see my sister and her family in the Midwest, my first trip since Al and I traveled to Norway in August. A good visit, anticipated for months, certainly not as strenuous a journey as this summer, but a bit of a psychological hurdle, given how my hands fell apart when we were abroad. I took extra care to protect my fingers, which paid off. No new ulcers, no damage. Just a rotten head cold on the way home, which mostly cleared by the end of the week.

So, here I am, starting 2018 with “revised” hands, all ten fingers. There is adjusting to do. I need to relearn what I can and cannot tackle, given that left index and right pinky are fused at the joint, right middle is stubby like a cigar, and left middle no longer bends at the partially amputated, grafted tip. The grafts have no nerve sensitivity, which requires mindful awareness of what I place where. Most of my fingers no longer move the way they used to. I’ve made an appointment for Thursday to see an occupational therapist in my hand surgeon’s office, to get some exercises to strengthen my grip, increase flexibility and discuss what I need to adapt.

Still, I’m feeling upbeat. I can do for myself again. Even temperatures here in the deep freeze for another week are only a temporary annoyance. Tucking hot packs into my wrist warmers staves off numbness. Staying cozy beneath the covers for an extra hour in the morning, now that I don’t need to push to get to the hospital, helps, too.

I could never have imagined, on New Year’s last, that I would be celebrating having all my fingers today. It’s just as well that we can’t see into the future. Too terrifying. If 2017 has taught me anything, it’s been how to stay very focused on the present, to measure progress in small steps, to be grateful for little victories that add up with persistence, to not let my fears keep me from taking reasonable risks for my health.

So, here’s to 2018. Bring it on. Just let me keep my fingers, please.

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.

Miraculous

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As of today, I have five dives left. My progress has been striking. I am touch-typing this post with five fingers between my two hands. Grafts on my right pinky and left middle finger have fully healed, as has the flap on my right middle finger. My left index graft is close to healed, though it’s taking longer because of a probable infection that is now under control. My right thumb is closing up, even as a second ulcer with calcium deposits opened in the tip last week.

Hyperbaric oxygen therapy notwithstanding, calcinosis remains one of my biggest challenges. My fingers are loaded with the little gray pits, and one is rising to the surface of my right index finger at just the wrong pressure point. But there is no cure for this, only patience and constant tending. Meanwhile, the worst of this marathon is behind me, thank goodness.

A friend asked me what I would do with all the time freed up in the morning, after the HBO ends next Thursday. Well, for one thing, I hope to get a little more sleep! It will be a pleasure not to have to head out to the hospital on a cold wintry morning at 7 o’clock. My goal is to use the regained three hours for my fiction writing. I’ve had to put this aside for the duration—filling the gap by listening to fine fiction via audio books while lying in the HBO chamber. Good to get back to my own creative writing, especially now that I can type again.

It will take some time to fully adjust to my “revised” hands. I’m still figuring out how much pressure I can exert on the two fingers that now have fused bones where knuckles used to be. I have next to no feeling in the grafts, so I have to learn how to interpret sensations deeper in these fingers—and avoid damaging what I don’t immediately notice.

The finger with the flap presents its own unique challenge: since the skin that was once the side of the finger is now wrapped over the top of the amputated tip, the nerves send confusing signals to my brain. The finger is also notably shorter and stubbier, which requires some readjustment to reach. I’m not quite sure what/where I’m feeling. So, practice, practice, practice, and my brain, I trust, will rewire.

But I remain amazed to have come through this eight month ordeal with functioning hands and ten fingers. This evening is the eighth night of Hanukkah. For me and my family, it is a most fitting way to mark my miraculous recovery.

I will be traveling over the weekend and taking a break next week from blogging. To you, Dear Reader, best wishes for a wonderful holiday season filled with joy, love, health 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: Element5 Digital

Tradeoffs

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After two dozen dives, my hands continue to heal, thank goodness. I’m typing this post with a few fingers on each hand, instead of poking away with a stylus.

But I am also beginning to experience one of the side-effects of HBO therapy—blurred vision. For more than a week, I’ve noticed that road signs look a bit fuzzy when I’ve driven home from the hospital. Then, last week, I realized that my computer glasses no longer were the right correction. Instead, I needed to wear my regular bifocals and sit a bit farther back from the screen.

Over the weekend, to my dismay, things got more blurred. I can certainly see, but when we went to the movies Saturday night, the screen was a bit fuzzy. I did some long distance driving on Sunday to be sure I could still handle it, and I could—but needed Al’s help to read signs.

Fortunately, I still have my most recent pair of glasses, which have a stronger correction for nearsightedness. As I’ve discovered over the past few annual check-ups at the optometrist, aging can improve vision of distant objects. So using my old prescription has compensated for the worst of the problem—for the time being.

I’m told it could continue to get worse, in which case I’ll need to get a new prescription and a pair of cheap glasses to tide me over until I finish my dives. Based on my discussion with the team last Thursday, we’ve agreed to apply for insurance coverage for 10 more sessions, to be sure my grafts heal fully. That will take me into the last week of December.

The vision issues, like my hearing issues that have required temporary ear tubes, should resolve within six to eight weeks after I finish diving. I’m hoping it doesn’t get worse. But it could.

Even still, I’d rather stick with the treatment. Too much is at stake for healing my hands, especially as the weather gets colder. If I have to get driving glasses for a few months, so be it. Fortunately, I had a previously scheduled eye dilation appointment with my optometrist last week, and everything else is fine. As for my farsighted correction, I’m better off with my current prescription. I guess I’ll be switching back and forth.

Miraculous as the HBO therapy has been for me, nothing is ever that easy.

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: Clem Onojeghuo

Fingers Crossed

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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