Special Treat

I am getting really tired of winter. I know, it’s only a month into the season, officially. We’ve had one real storm and another day of snowfall; not so bad, so far. But it’s the extreme cold of recent weeks and the fluctuating temperatures that I’m finding exhausting. At least the days are getting noticeably longer, once again—a saving grace.

So it was this weekend that I decided to beat the winter blahs and treat myself to some new clothes. I have been wearing the same sweatpants, turtle necks and long sweaters, in varying combinations, for months, now. And I have not gone clothes shopping in a very long time—not since my hands began to deteriorate last spring. The idea of trying on outfits was anathema. I couldn’t manage it. Now that my hands have healed, a shopping spree was a real option.

It didn’t hurt that end-of-season sales were in full swing (ironic, since the season is far from over!). I gave myself a full afternoon, so I wouldn’t feel rushed, to check out some stores at a nearby mall. This, in itself, was a change of tempo, since I’ve come to rely on the Internet for the majority of my purchases.

I picked a good time, because the mall was not crowded. The stores I chose had only a few customers; sales staff were pleasant and helpful. And I scored big: a pretty and practical wardrobe for transitional temperatures, with coordinated layers that I can mix and match. All soft, comfy and relatively easy to put on and take off. And all within the modest budget I’d set for myself.

Most amazing, I actually had fun shopping! This has not been the case for a long time. Dressing, undressing and dressing again has been a huge hurdle. I haven’t been happy with how clothes fit. But I’d done enough homework to pick the right stores with options that fit my taste and pocketbook. In two hours, I was done, buoyed by success.

In addition, I realized that my vision, which has been blurred for weeks due to the hyperbaric oxygen therapy, is beginning to clear. When I had ventured to a mall several weeks ago for a small errand, the signs were so blurred that I felt dizzy. As I left the mall on Sunday, it suddenly occurred to me that I hadn’t noticed or felt disoriented by my inability to see objects that were farther away. So, more progress.

Snow on the ground will be gone by Tuesday evening, thanks to a day of heavy rainfall (fortunately we’re in a short warming pattern, or we’d be buried again). At some point, the crocuses will peak out of our garden. And I continue, thank goodness, to heal.

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.

Sideways

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

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.

33

We had our first snow of the season on Saturday—a fluffy powder that transformed trees to Battenberg lace. The flakes were too tiny to reveal intricacies as they speckled my brown coat on my walk to and from our synagogue for Shabbat services. By evening, at least four inches covered Al’s car in our drive, and our once-plowed street was white again.

But, no matter. It was our 33rd wedding anniversary, and we would not be deterred from dinner at our favorite restaurant. Snow powdered the night sky as Al carefully drove us along semi-cleared streets. A few other intrepid New Englanders were out and about, as well, and the restaurant was packed when we arrived. We watched the snow blowing beyond the windows as we toasted another year together, a challenging year dominated by my deteriorating hands, but a year that brought us closer.

By the next morning, the sun was high and snow dripped from trees and eaves. We enjoyed a great brunch out, then drove into Boston for a powerful performance of Hold These Truths, a play by Jeanne Sakata, at the Lyric Stage Company. It’s based on the true story of Gordon Hirabayashi, who challenged the internment of fellow Japanese American citizens during World War II. Inspiring and sobering, well worth seeing, especially now.

I was still thinking about the play on Monday as I set out to the hospital at seven o’clock for my HBO therapy. By the time I left, nearly half-past eleven, the temperature was mild, much like that day so long ago when Al and I married.

It was my second marriage, his first. I had sewn my wedding gown, hand stitching nine yards of lace to the tulle veil. The rabbi who introduced us performed the ceremony. We were giddy and full of optimism as we drove to Cape Cod for our honeymoon. One misty night, as we walked Nauset Beach, the sand sparkled with each footstep and the sea froth glowed. It was ghostly, mystical. It gave me chills.

Later, we learned that we had witnessed the natural phenomenon of sea phosphorescence, caused by tiny sea creatures, or, perhaps, some form of sea algae, with their own inner light. But I still think back on that night, when we had no answers and only astonishment, as filled with an eerie, magnificent magic.

About a month later, we learned that I had some form of autoimmune disease. Three years beyond that, I was diagnosed with scleroderma.

I have written before in these posts how a complex, chronic disease becomes the third—unwanted but ultimately accepted—partner in a marriage. Sometimes it fades to the background and can almost be forgotten. Other times, it clears its throat with a rough cough, demanding attention. Then there are times, like this year, when it roars and dominates.

Thirty-three years is a long time to live with an unwelcome guest. Throughout, Al has been by my side, steadfast, the one who hears and sees the worst of it and always reminds me that as long as we have each other, we’ll be okay. The excitement I felt on our wedding day may have all too soon been supplanted by the fear and anguish of a terrifying diagnosis. But love and trust, tended over decades, have proven much stronger than any disease.

Outside our window on Monday night, the streetlamp casts a stark, inky shadow on the snow from the sign Al placed on our front yard a few weeks ago: “Hate Has No Home Here.” He has given more signs to our neighbors, who were pleased to accept them. A few have placed the signs already; he hopes to create a little oasis of radiance on our street. Wednesday evening, at his initiative, we will help serve meals at a homeless shelter nearby.

This is the man who left a trail of sparkles in the sand on a misty night, as a ghostly surf pounded the shore. I had no idea, then, how truly lucky I was.

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: Luke Hodde

Tradeoffs

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

Baking Bread

As of today, I am two-thirds of the way through my HBO treatments: 20 dives down, 10 to go. Last week’s mishegas about another potential infection was doused effectively with medical grade bleach soaks for the recalcitrant graft and a visit to Dr. S, who reassured me that the finger looked fine. Thank goodness!

Meanwhile, I continue to make more progress. Each day, the edges of the grafts pull a little farther away from surrounding skin, which is what they are supposed to do as new skin forms beneath. My fingers feel more able, despite missing tips and odd shapes.

I didn’t cook Thanksgiving dinner (Al’s department—and very good it was, too), but I did make the stuffing that we baked separately in the oven (main course was pecan-crusted salmon). This is one of the first times in about six months that I could tolerate stirring contents of a hot pan. Previously, the rising heat and steam were very painful to my exposed, over-sensitive wounds. Not to mention, I couldn’t hold the spoon.

My biggest accomplishment in the kitchen, however, was finally being able to bake bread again. It has been my practice for years to bake fresh challah for our Friday night Shabbat meal. I have a great recipe from a cookbook that my sister gave me nearly 30 years ago, and I’ve been making it since Mindi was a toddler who relished punching down the risen dough each week.

It’s the highlight of our Shabbat dinner, as well as a source of pleasure and pride for me to provide my family and friends with delicious homemade bread. But my hand debacle has made this favorite, meditative task an impossibility since summer. Al took over baking after my surgery and has become quite adept. Still, I missed doing it myself.

So this post-Thanksgiving Friday, as I was hanging out in the kitchen with my two visiting daughters, I decided to see if I could once again slip my fingers into a pair of de rigueudisposable rubber gloves, essential for any handling of raw ingredients—and, voila, to my amazement, they fit over my bandages without any discomfort! I proceeded to proof the yeast, pour flour, sugar, salt, oil and eggs, plus the yeast and warm water, into our old Cuisinart, mix the dough and pull it out onto the floured bread board.

And, as my daughters gave approval and encouragement, I kneaded the dough by hand. This is my favorite part of baking bread. There is something so magical and satisfying about feeling the dough transform from a sticky mass to a smooth, soft, elastic whole. My hands had not lost too much strength or touch. Into the oiled bowl the dough went, covered with a clean towel, to rise.

I punched it down for the first rising, but Mindi was getting organized to drive back to Boston by the time the dough had doubled in size a second time. “Do you want to punch it down?” I asked. “It was a little hard for me because my fingers don’t bend quite right.” She smiled, then proceeded to expertly punch all the air out of the dough. Still a special moment to share.

Later, when the challah came out of the oven, I sent her a text with a photo.

“Ta-da!” I wrote.

“Very nice!” she responded.

Yes, very nice, indeed.

P.S. This post is my 300th entry in this blog, When I began writing in January 2012, I had no idea where what has become an online journal of my life with scleroderma—and just life, which is really the point—would take me. More than 200,000 words later, I’m still discovering. Thank you, Dear Reader, for sharing the journey, and for your encouraging and thoughtful comments along the way, which keep me going.

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.

Fingers Crossed

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

Maiden Voyage

Hallelujah! I can drive again long distance on my own. Last weekend’s hour-plus experiment with Al as my backup gave me the confidence to try going it alone this week. So on Friday, after finishing up my morning HBO therapy, doing all of my bandages and putting on my makeup (not allowed inside the chamber), I drove an hour into Boston to see my favorite hairstylist for a good cut.

Now, to some it may seem silly to drive that far just to get a haircut. However, this stylist has been doing my hair for more than 15 years, beginning when I was commuting to work near Boston. She is very gifted, precise and understands exactly how to make me look my best. Given the way that scleroderma has changed my face over the years, having a great haircut is much more than an indulgence. It is one of the few ways that I have control over my appearance. I always walk out of the salon feeling wonderful.

The last time I had seen her was 10 weeks ago, more than twice the amount of time that I usually allow to lapse between visits. That trip was courtesy of my younger daughter, who was in town for a visit and drove me in for my appointment, four days after my first surgery. I wasn’t even sure until the night before that I would be able to make it, but was very glad I did.

Now, more than two months later, my hair was flopping, unruly and difficult to manage. Whenever I looked in the mirror, I felt that I looked old and weary. The hand ordeal was taking its toll.

Thank goodness for the HBO therapy. After 10 dives, not only are my grafts healing, but also my energy level has improved significantly, to the point where I felt confident enough to make an appointment. Originally, I had planned to take the train to Boston—time consuming and pricey, but still a good option. Then, when I realized last Sunday that I could actually handle the car on the highway again, I was determined to drive into the city.

Complicating my plan was a cold snap. We’ve been enjoying unseasonably warm weather here in Central Massachusetts, but late fall returned with a vengeance at the end of the week with a freeze overnight and 30°F temperatures, plus stiff winds during the day. I didn’t care. I added extra layers and figured out where to park that would enable me to take a break from the weather on the way to the salon by eating lunch at a favorite restaurant.

My visit did not disappoint. My stylist, who is one of the only women I’ve ever met who looks fantastic with magenta hair, gave me a hug and set to work, skillfully trimming at least an inch, reshaping my graying mop. As she snipped, we caught up on health, family and life in general. When she finished putting the last hair in place, I was grinning. What a relief! I felt like myself again.

The 10 minute walk back to the car was bitter cold, but I was glad that I had driven and not taken the train, which would have required waiting on a very cold platform. The drive home in rush hour on Friday afternoon was long and tedious, and I was happy to walk into our warm house, where Al was preparing Shabbat dinner. I had to lie down for a half-hour, because I was very tired, and my hands were a bit uncomfortable from all the driving in stop-and-go traffic.

But it was well worth it. I no longer feel that I look like a patient. I no longer feel confined.

On Sunday, I drove into Boston again, this time for brunch and a movie date with my eldest daughter. We had a great time together, and when I came home, I still had plenty of energy to sit down at my computer and write this blog post. On Monday afternoon, I will get in my car once again after my HBO therapy and drive into Boston to see my rheumatologist at Boston Medical Center for the first time since my second surgery. The last time I saw him, after my first surgery, Al had to take off from work to bring me. Now, I can do it myself.

Despite all this progress, I know I can’t overdo. Three round trips in four days is plenty for the next week. Driving after the hyperbaric chamber is more tiring than driving on the weekend when I’m rested. Still . . . it feels 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: Alex Iby

6 Down, 24 to Go

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.

Deep Dive

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