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

So Far, So Good

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

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

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

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

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

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

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

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

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

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Next Steps

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

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

Sticking Point

Now that I’m starting to get back into a regular schedule, it’s a relief to be able to focus on work and other writing, and forget about my hands for a few hours. They do have a way of reminding me, however, that they need attention. As in beginning to tingle and twinge within a half-hour of time to take my pain medicine. Who needs to set a cell-phone alert? It reminds me of how our dear departed golden retriever, Ginger, used to bop my fingers off the keyboard with her nose when it was time to take a walk.

I wish it were still her, and not my fingers, calling the shots. One of the hardest aspects of this whole ordeal is simply having to accept the fact that I cannot escape it. I can’t make my fingers heal any faster than they are able. I’m certainly not going to cut them all off. And I’m not about to roll up in a ball and hibernate until it’s over. I can only sit with it, minute by minute, hour by hour, day by day.

I boost my spirits by celebrating small victories — the ability to make a few notes by hand, regained stamina to sit at my desk for another hour, a creative solution to cracking an egg and separating the white from the yoke without messing up my bandages.

Scleroderma is a disease that makes you feel stuck in your own skin. I remember that sensation all too well from the early years when my illness was still in a very active phase. About three decades ago, my skin had tightened halfway up my forearms, and I was beginning to have discomfort blinking. The veins were not visible on the backs of my hands. My skin felt like leather that had been wet and then dried in the sun. It was terrifying. Mercifully, treatment with D-Penicillamine, since discredited in the research literature (but I am convinced it saved me), reversed the tightening. Although my skin is not normal, it has been decades since I’ve felt so trapped within it.

Now, I feel stuck in a different way — stuck in what feels like an endless cycle of doctors appointments, dressing changes, pills upon pills, and the sheer inability to do what I want to do the way I want to do it. That, plus the discomfort and pain that is just what I have to live with for who knows how long. It is very frustrating. Meditation and good, healthy distractions, like getting back to my creative writing, are among the best solutions. Hugs from Al help a great deal, too.

When I dip into the news, a practice I am trying to limit to reading reliable sources and listening to thoughtful podcasts in order to keep my sanity, I feel a different intensity of stuck-ness. How is it possible that we are actually seriously discussing the possibility of nuclear war with North Korea? What can any of us do to stop it? I can still remember Cold War air raid drills when I was in grammar school, kneeling between classmates in the school hallway with one hand under my forehead and the other on the back of my head. As if that was really going to save any of us from the A-bomb. The fact that reckless, macho-on-steroids quips and put-downs are defining this path we are on, rather than serious diplomacy, boggles the mind.

In a very strange way, my hand saga provides a welcome distraction of stuck-ness from all of this. How ironic. At least, when it comes to my own health, I have some degree of control over the outcome. God willing, the adults will take charge and walk us all back from the brink of an unthinkable fate.

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: Nick Abrams

To Appeal or Not to Appeal

I’m pleased to report, three weeks post hand surgery, that I’m making small progress every day. I’m able to sit at my computer for most of the afternoon, and it’s been great to catch up with my clients and focus on projects instead of my hands. I drove short distances twice last week — to two separate medical appointments. My hands were tired afterward, but it was wonderful to feel that I had some independence again. This Tuesday afternoon, Dr. S removes the sutures in two of my fingers, which have been driving me crazy. Hoping this will help to relieve some of the chronic pain that I’ve been experiencing.

However, last Thursday I found out that I was declined for the hyperbaric oxygen therapy, otherwise known as HBO. It wasn’t a big surprise, because the criteria for insurance coverage are very narrow and specific, unless you have a diagnosis of diabetes. Which I do not.

I’m not sure what to make of this. The chance of improving the odds for healing pre- and post-skin grafts — the next step in my surgery — is certainly very appealing. At the same time, the huge time commitment that this therapy requires is daunting. As I mentioned in a previous post, it involves spending three hours a day, five days a week for six weeks, lying in a large chamber with a clear cover, during which time you are exposed to 100 percent oxygen to boost healing.

Although I am not claustrophobic most of the time, I have my moments. I’m only 5’2″ tall (actually a little less than that now, as I’ve started shrinking), and being amidst a large crowd can really spook me, because I can’t see over people’s heads. I’ve also had some uncomfortable experiences when I’ve had MRIs. One time, I had to press the panic button because I was starting to feel lightheaded by being so confined.

I have no idea if appealing the insurance company’s decision will make a bit of difference. Highly doubtful.

And yet . . . I don’t like the idea of giving up without a fight. I found a current research study in the International Journal of Dermatology that had very encouraging results for healing scleroderma ulcers using HBO. The only problem, as with so much scleroderma research, is that the sample size is so small — only six subjects. But every one of the subjects experienced improvement. So I sent the study along to the Wound Center, which has been handling the insurance inquiry, and I need to follow up with them.

Meanwhile, it’s time to prepare for Rosh Hashanah, which begins Wednesday evening. Al is my sous chef, with help from Emily, as well, come Wednesday. We look forward to gathering with family and friends for a festive meal to welcome in the Jewish New Year. This past year has brought some of the greatest health challenges that I have ever faced. Whether you celebrate or not, whatever your tradition and faith, may all in need of healing be blessed with improved health — physical, mental and spiritual.

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: The Lærdalstunnelen, 24.5 km, world’s longest road tunnel, from our Norway trip. There are beautiful blue lights at three intervals to break up the monotony, and, I suspect, to ease claustrophobic fears.

Hurricane Season

Harvey, Irma, José, Katia. It’s only September, and we’re already almost halfway through the alphabet, reeling from two of the most destructive Atlantic hurricanes on record. Recovery from Harvey in Texas and Irma in Florida and the Caribbean will take months, maybe years. We send thoughts and prayers, open our pocketbooks to support those in need, and worry. Where will the next killer storm make landfall? What’s next? Will we and our loved ones stay safe?

I once stood in the eye of a hurricane. It was a Monday, August 19, 1991. Al and I had taken Mindi, then almost 3, to Block Island for the very first time. We had heard wonderful things about this lovely place off the Rhode Island coast and were enjoying the little cottage we had rented and a great day at the beach the Sunday we arrived. This was, of course, before cell phones, wide access to Internet, and all the news-gathering outlets that we now take for granted.

We had decided to avoid TV for our time away from home. So we did not know anything about Hurricane Bob, a Category 3 storm that was heading our way. That is, not until our rental agent knocked on the door late Sunday and told us that Bob was expected to pass directly over the island the next day. We had a choice: to wait it out in the cottage or go to the local school that was serving as a shelter. We chose the latter.

Al entertained the children around us in the shelter by playing his recorder, and I have vague memories of making origami animals for Mindi and the others. It was crowded and humid in that gymnasium, but people remained good-humored, for the most part. Sometime in the early afternoon, the eye of the storm passed directly overhead, and we went outside to look. The sun was shining, the sky was blue, and it was quite peaceful and refreshing. As the sky darkened and the wind picked up, we retreated to the gymnasium to wait out the rest of the storm.

Later, we went down to the shore to check out the damage. Beached sailing yachts, broken tree limbs, and much fascinating detritus had washed up on the sand. Fortunately, our little cottage suffered very minor damage, just a few leaks. Most of the vacationers went home, and we had the island mostly to ourselves the rest of the week. Sometimes, ignorance is bliss.

A few days later, I realized that my period was late. After five months of infertility treatments that involved artificial insemination with Al’s sperm (the least romantic way to make a baby), we knew that I might actually be pregnant. Giddy with excitement, we brainstormed names beginning with the letter B. This was our first glimmer that Emily (we gave up on B names) was on her way.

I was remembering all this family history on Saturday afternoon, as Irma hurtled toward the Florida coast, and Al and I were taking a hike in the woods. He had convinced me to get out of the house and into the great outdoors. It had been an emotional week. My head was swirling. Last Tuesday, Dr. S informed me that he thought skin grafts could work on my fingers. This was completely contrary to initial assessments by him and the first hand surgeon I saw. Such good news. No guarantees that it will work, but he wanted to try before going to the extreme of amputation.

Then, on Thursday, we met with the vascular surgeon for an evaluation for hyperbaric oxygen therapy to accelerate healing. What I did not know was how intensive this treatment is: three hours a day in the chamber, five days a week, for six weeks. As the doctor explained, it’s like a part-time job. As of yet, we do not know if I will qualify for the insurance coverage, because the criteria are quite narrow and specific. But the Wound Center staff are doing their best to see if I can get approval. Then I have to figure out if I am really up to doing this. The prospect is scary, but if it could help save my fingers, then I need to give it serious consideration.

Like I said, my head was swirling. What if the grafts don’t work? That would mean a third surgery and amputation. What if I’m too claustrophobic for the hyperbaric oxygen therapy? How am I going to do that and keep up with my client work? Freelancers don’t get sick pay. How many more surgeries am I facing? How long am I going to feel incapacitated and so dependent upon others to do even the most basic things?

On Monday, my mental hurricane decreased in intensity. For the first time since early August, I was actually able to drive my car a short distance. First, I drove around the block while Al waited for me in the driveway. Then I took my maiden voyage to the hospital, a 15 minute drive, for an appointment with my infectious disease specialist. As we reviewed my antibiotics and discussed plans for the next operation, he looked a bit skeptical. He wondered aloud if I had contacted my rheumatologists to see what they thought about the potential success of skin grafts. I had not. But I will before proceeding. Had I not been able to drive myself to and from the appointment, his question would have set my head spinning again.

As it was, I drove home. I was able to use my key to lock and unlock our door. I was able to take the mail out of our narrow mailbox. I did not need a nap. I was able to get some client work done. I wrote this blog. And I did not hurt my fingers, even as my hands were tired and a bit achy from the excursion.

I do not know how much worse this is going to get. I do not look forward to more surgery or intensive treatment in a hyperbaric oxygen chamber, assuming that’s even possible. I do not look forward to months and months of healing. Perhaps I was just standing in the eye of the storm on Monday. But it felt really, really good.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: NASA/NOAA/UWM-CIMSS, William Straka

Im-patient

One week and counting since my hand surgery. On Tuesday afternoon, we will meet again with Dr. S to review status and plan next steps. Contrary to my initial euphoric reaction to seeing that I still had 10 fingers when I woke up from the operation last Monday, I soon realized, when changing my dressings, that the situation was much more complicated.

I have temporary pins in the two fingers I thought I was going to lose, not permanent ones. I’m hoping that Dr. S has received helpful, wise feedback from the other hand surgeons on his listserv, but I am not optimistic that he will be able to save those two fingers. Like I said, it’s complicated. At the very least, he bought me time for a thorough review.

In short, he did exactly what he said he would. He stabilized my hands for the next phase. It’s a real relief to have the protruding tips of bone removed and the two broken fingers no longer flopping when I bandage them. I have six open wounds to dress every day. It takes about two hours and is very tiring, sometimes quite painful. Al is a great help, as always. I have certainly shed plenty of tears as I have tried to come to terms with everything. And he has given me plenty of good hugs.

It’s been an emotionally and physically draining week, especially when I realized the pins were temporary. Thank goodness for family and friends who have been a tremendous support, with meals, visits and phone calls that have given me a big boost.

But I wish it were over already. I wish that I could visit the original Star Ship Enterprise, go to Sick Bay and have Dr. McCoy wave that magical tricorder over my hands to heal them immediately. He was my favorite character. If wishes were fishes . . .

In addition to seeing Dr. S on Tuesday, I have an evaluation on Thursday at the Wound Center for hyperbaric chamber treatment that may accelerate the healing process. Dr. S had also mentioned the possibility of giving me Botox shots in my hands to block the sympathetic nervous system response that causes my blood vessels to contract so quickly and uncomfortably from Reynaud’s. Apparently, the shots would last three months and carry me well into the winter with warmer hands, another boost for healing.

So that is what I must focus on. I have stopped watching the evening TV news and only read or listen to thoughtful podcasts to keep up with current events. I figured out how to prop up a book and use a stylus to help me turn pages—a major achievement and relief to begin reading again. I am building up my stamina to sit at the computer for a couple of hours a day, so I hope to be able to get some client work done this week. I have cut back on the Vicodin to one pill at night. It causes crazy dreams, sometimes very scary, so I hope to be free of that soon. Each day brings small victories that deserve celebration and gratitude. No Dr. McCoy, just the hard reality of slow and (I hope) steady healing.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.

Image Credit: DeForest Kelley as Dr. McCoy from the original Star Trek, Wikimedia Commons

My Everest

Much has happened in the weeks since I last wrote. I had hoped to share a simple, upbeat travelogue about our wonderful August vacation to Iceland and Norway upon our return a week ago, Sunday. The trip was, indeed, magnificent. But life is not simple, especially with scleroderma. My severe ulcers that I have written about for months took a serious turn for the worse. As I write on Sunday afternoon, I am facing major hand surgery Monday morning. Here is what happened:

For more than three decades, I have been managing digital ulcers on multiple fingers. I have gone through infections requiring IV infusions, more rounds of antibiotics than I can remember, and months — sometimes years — of waiting for ulcers to heal. I have learned how to compensate and find creative solutions for handling daily tasks. I have learned to live with people’s reactions to my oddly shaped, bandaged fingers. But this spring, something went terribly wrong. My ulcers on five fingers formed large scabs, or escars. They were hard and thick and dark; when tapped, they felt like turtle shells.

As I have been documenting in this blog, for the past three months I’ve been trying to find a way to get them to heal. As the escars have receded, part of the natural healing process, I have sought out state-of-the-art wound dressings and consulted with wound specialists, with varying degrees of success. When I didn’t understand, however, was the real risk for the ulcers to work their way down to bone.

The Wednesday night before we were set to leave on our trip, I was changing my dressings as usual. But suddenly, the escar on my right pinky (the ulcer that had been infected a few months ago) lifted up to expose the knuckle bone beneath. I was terrified. We called the hospital’s Wound Center and spoke to a nurse practitioner who was covering for the night. She suggested that unless I started running a fever, it was safe to wait until morning to get medical attention. This was good advice, because the last thing I wanted to do was spend five hours in the ER.

On Thursday, Al came with me to see, first, a nurse practitioner in the Wound Center (no surgeons were on that day), and later in the afternoon, an excellent orthopedic hand surgeon/plastic surgeon. He looked at my pinky with its exposed knuckle bone and gave me the news straight up: because of my scleroderma, options such as skin grafts would not work, and the only solution was amputation.

I was in shock, as was Al. Never in my wildest dreams had I anticipated this path. He said the escars on my other fingers were “classic scleroderma,” and that they were covering dead skin. I do not know if there had ever been any hope for real healing once the damage had been done. I asked him if it was still possible to travel. He said yes, so long as I kept the wound clean, moist and protected, and was on appropriate antibiotics. It would not change the prognosis nor make things worse.

By the time we got home, I had made up my mind to take the risk and go ahead with the trip. Even though it was insured (this time, I had met the deadline for getting travel insurance that would cover us for pre-existing conditions), we had been planning this wonderful trip for months, and I just wanted to go. But then I changed my dressings that evening. Suddenly, the escar on my left index finger began to recede to expose the back of the knuckle. I was in hysterics. How could this be happening? I told Al that I couldn’t imagine traveling now. He said he would go with whatever I decided. He went to sleep, and I went downstairs to sit on the living room couch and try to think.

I emailed a couple of friends for help to sort it out. I realized after a few hours of agonizing that I was channeling my mother, who was a very anxious woman who never took risks.  She came to this country from Germany in 1936 at age 14, escaping the trauma of the Holocaust, but never free of what might have been. Her fears of danger kept me from exploring the world when I was young, with the exception of a two-week tour of Europe that my mother’s mother paid for when my sister and I were in college — my grandmother’s way of exposing us to the world that she missed so much.

Facing the inevitability of losing at least one finger and maybe more, I knew that I needed the inspiration of beautiful landscape in order to face what was to come. I wrote an email to the hand surgeon and asked him if the risk of exposed bone was additive with more fingers involved, and if the prognosis would change if we went ahead with the trip. I received a thoughtful email back in the morning that explained that each finger had to be considered independently, and that the risks and prognosis remained the same. I also checked with my ID specialist about antibiotics, and he said that what I had already planned to take with me was appropriate. I told Al that I wanted to go. He gave me a big thumbs-up and a big hug.

And so, we went, first to Reykjavík for two days, and then on to Norway. We spent five days in Bergen, on the southwest coast, home to some of the country’s most famous fjords, then took a scenic 7 1/2 hour train ride to Oslo, stayed overnight, and flew to Tromsø in the Arctic Circle. There we stayed for three days, and then wrapped up our trip in Oslo for our final weekend.

The scenery was everything I’d hoped for and so much more. Iceland is in constant formation, with active volcanoes, geysers, thundering waterfalls and visible tectonic plates. The mountains are sharp, craggy and snowcapped, a visible reminder of the earth’s power to force rock skyward. We saw puffins and glaciers, smelled the sulfur of hot springs, watched Icelandic horses and sheep cropping emerald grass, marveled at moss reclaiming lava fields.

In Norway, we immersed ourselves in beauty, from towering green and rock mountains bordering calm saltwater fjords to the art of Edvard Munch (MOOnk). We drove through the world’s longest tunnel (25 km) with its sapphire blue lighting, stared slack-jawed at thousand-foot waterfalls nearly everywhere we turned, rode the scenic Flam railroad up and down a mountain. Staying in wonderful Air B&B flats, we ate many of our meals at home to save some money (restaurants are very expensive in Norway), but treated ourselves to four exquisite dinners out.

For all this, however, travel was very strenuous for me. It took about two hours in the morning and the same at night to change my dressings. Our supplies included 700 cloth bandages, 32 sheets of silver alginate dressing, a cream I had discovered online that includes hyaluronic acid and is intended for radiation burns, lidocaine gel, Q-tips and more. Along the way, three more ulcers receded to expose bone. It was as if all my ulcers had hit a tipping point within the same week. Sometimes changing the dressings was so painful, it reduced me to tears — and I am not one who cries easily. Al was my rock, so attentive and supportive. He would read to me of Norse mythology as I went through the tedious process of tending to my fingers, help me get dressed, take my arm to make sure I didn’t fall, comfort me when fears overwhelmed me.

Throughout the first week, as my ulcers deteriorated, I agonized over whether I had made the wrong decision. Al said let’s take one day at a time. Even though we often didn’t get out until afternoon, we made the most of each day. New friends in Bergen gave us a grand tour of the fjords and invited us to their home for Shabbat dinner. When I dropped my wallet without realizing it, in the pouring rain as we were getting on a bus, a young man tapped me on the shoulder and returned it to me.

My self-doubts finally dissipated when we reached Tromsø. The idea to go there had been mine, a major challenge with my Reynaud’s. The Gulf Stream keeps temperatures in the 50s Fahrenheit in the summer — not the warmest climate for me, but still an opportunity to get as close as I ever will to the North Pole. Our first full day there, the rain that punctuated our entire trip cleared as we were riding a cable car to the top of a small mountain that overlooked the city, which is on an island. As I walked out on the top of the mountain, with its spectacular view of huge, jagged, snowcapped peaks in the distance, I was suddenly overwhelmed with emotion. I had made it, here to the Arctic Circle, with my aversion to cold and my crazy hands. This was my Everest. In that moment, I regained my courage. I knew I could face what was coming next.

The following day, the sun was bright and the temperatures in the 60s. We had signed up for a five-hour tour of a neighboring island, and with luck, ended up as the only passengers on the trip. Our tour guide, Pedro, who had come from Lisbon to Tromsø in search of the Northern Lights (only visible in late fall and winter), proved to be a wonderful companion and conversationalist. We covered everything from Norwegian geography to European views and fears of the Trump presidency. The highlight of our day was eating lunch on a cream-colored coral sand beach (there is a coral reef in the Arctic — who knew?), talking politics, drinking rice milk hot cocoa and eating delicate Finnish homemade cookies.

As the end of our travels drew near, my apprehension began to mount again. Fortunately, our seven-hour flight back from Gatwick, London, was on a Boeing 787 Dreamliner, the newest and most advanced jet in the sky. Better humidity, improved air pressure changes and even comfortable seats in economy made it a much easier flight than I had anticipated.

This week, reality hit home hard. We saw the hand surgeon late Monday afternoon, and his assessment was that I would need what’s called a hand “revision” that would involve trimming five of my fingers. His goal was to leave as much length as possible. But, in all probability, my right pinky and left index finger would be reduced to one digit stumps. The other three — left middle finger, right middle finger and right ring finger — would involve trimming exposed bone and leaving open wounds in the hopes of preserving length as skin regenerated. As it turned out, however, his OR schedule was booked through September. He referred me to an experienced colleague with similar credentials, who had an opening on Monday.

We met the second hand surgeon on Thursday. He is meticulous, thoughtful and thorough. With a very sober face, he told me that this would be the first of “many surgeries” because of the complexity of the damage. He described my situation as “serious scleroderma.” He is concerned about healing with my poor circulation and suggested the possibility of having a sympathectomy done at a later point to increase blood flow to my hands. He agreed with the first hand surgeon that I should have hyperbaric chamber treatment in the wound center to help improve oxygenation with my blood and speed healing. On Monday, he will debride all the ulcers, trim back exposed bone, and determine the best way to deal with my two broken knuckles. He will also take pictures and share them on a list-serve for hand surgeons to get more input about next steps.

I was very frightened and distressed after this meeting, even as I feel fortunate to have such an expert taking care of my hands. He has  an excellent reputation, especially for follow-through, and is in high demand. The last few days have been an emotional roller coaster ride, softened by love and support from family and good friends.  I wax and wane between fear and grief over losing part of five fingers and just wanting to be rid of these painful digits that no longer work.

My surgery is scheduled for first thing Monday morning. By the time you’re reading this, it will all be over. I do not know if I will be up for writing what happened by next week, but I will certainly share the next chapter when I am able. Let the healing begin.

Post-op P.S.:  Thank goodness, the procedure went better than expected. My circulation exceeded the hand surgeon’s expectations. Still have all 10 fingers, for now. He put temporary pins in my right pinky and left index finger to stabilize them and buy me some time. He is sharing pictures of my fingers on an international list serve for hand surgeons, so we will have input from the best of the best for next steps. Pain management will be the next challenge, but I am so grateful and relieved to have made it through this procedure. Thank you for sharing my odyssey, and thanks to Al for being my post-op scribe and life’s partner.

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.