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.

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

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

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.

Sinkhole

Late Monday afternoon, just after I’d finished work for the day, the water main on our street broke. Water started bubbling out of cracks right in front of our next-door neighbor’s house. By the time I went to investigate, maybe a half-hour later, it was gushing down the street, into the gutters.  A couple of DPW trucks drove by, then drove by again. All the neighbors came out to comment and gawk at the river in the middle of the road. By the time the water was shut off for the whole street, a chunk of asphalt had formed a sinkhole.

Now, as I write, around 8 o’clock in the evening,  a work crew is milling about outside. We’ve been told it may be 8 to 10 hours before the water main is fixed. It’s going to be a long, dry night.

My first thought, when I realized that we had no water, was how am I going to wash my hands tonight? Fortunately, we have some distilled water in the house. I also just received a shipment of saline wound wash. So I should be able to take care of my ulcers, thank goodness.

This follows a day in which I learned that, contrary to what I’d been led to believe about procuring the high end wound dressing I’ve been seeking, that I did not need a prior authorization, given that this dressing is considered to be a durable medical supply. I just needed to have my rheumatologist fax the prescription to the supplier. (This, after I learned from several phone calls to various sources, is possible because I can get said durable medical supplies out-of-network without penalty from my insurance company.) All of this would be great news, except for the fact that I have lost weeks in a wild goose chase for prior authorization, when I probably could have had the dressing by now, saving much pain and frustration.

All of this is compounded by the fact that we are leaving for vacation soon. I’m still hoping for a miracle that somehow all the approvals will go through and I can get the dressing before we go. But each day makes that less likely. So I’ll just need to do the best I can with what I have.

The one thing I have control over is how I respond to the situation I find myself in. I started doing some guided meditations about pain management. It’s really quite fascinating, because the focus is not on trying to avoid the pain, but rather on changing how I understand and respond to it. It’s very easy to fall into the hole of fear and anxiety about what is happening to my fingers, given that the healing process is so excruciatingly slow. The pain triggers those fears. I look at the deep wounds when I change my dressings and don’t know how to interpret what I see and feel.

What I have learned is that the more tense and stressed I am, the worse the pain becomes. The more I’m able to relax and sit with the pain, the less overwhelmed I am, and the pain itself becomes more manageable.

Not easy to remember when my fingers start going crazy as my medication wears off by the end of the day. But I’m trying. What other choice do I have?

Now the DPW work crew is banging and rattling about. By morning, I hope the sinkhole will be repaired and that we will have running water again. Thank goodness these men are willing to work through the night to take care of our street. Every day brings the unexpected. How we deal with it is up to each and every one of us.

I’ll be taking a break from my blog for the next few weeks, back at the end of August. I hope, Dear Reader, that the rest of your summer is free of sinkholes and full of good health and pleasant journeys.

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.

En Route

Traveling always involves a lot of logistics. Last week, all the more so. Months ago, I had planned a three-day, Sunday-through-Tuesday business trip to NYC. The first two days were devoted to board meetings for a philanthropy of which I am a trustee, including a day of strategic planning that I had helped to organize. The third was a full day meeting with clients. I had piggy-backed that third day onto the first two in order to save myself physical wear and tear from traveling to Manhattan twice in one month.

What I had not been able to anticipate, however, was the state of my hands and my back (of which I have written a lot in recent posts). What to do? I couldn’t/didn’t want to cancel out, but I wasn’t sure how to manage. Would I be able to handle my luggage? How would I keep my hands from getting more damaged or protect myself from picking up yet another infection?

My initial plan to protect my hands from lugging a suitcase on and off trains and through subways—use a backpack—was unworkable. With all the supplies I needed to bring for hand maintenance, personal hygiene, medications, etcetera, even packing very lightly for clothing and using Al’s nylon backpack, the thing was way too heavy and unwieldy for my slow-healing, strained back. So I switched over to my wheeling carry-on. But what to do about getting around?

Aha! Obviously, I had to rethink ground transportation. Time to rely on taxis or Lyft or other options. Saving money was not as important as saving my health. And if I did use the subway, I decided I’d only do it if there was elevator access or easily walkable ramps.

As for pulling my bag along Manhattan sidewalks, I planned to keep that to a minimum, not only because of the crowds, but also because many of the streets and sidewalks in Midtown are either under construction or aging and in need of repair.

Sometimes I improvised. When one of the trains I took had split upper and lower deck seating, I stayed in the middle on a jump seat to avoid lugging my luggage and made friends with the conductor, who helped take my bag off the train to a lower platform.

Everything worked out better than expected. From my Monday meeting, located at a Wall Street law firm, I was able to get a courtesy car ride to my Midtown hotel. On Tuesday, I simply checked my bag at the hotel, went to my meeting in Chelsea, and picked it up on my way back to Grand Central, which was a five minute walk down Park Avenue. Train transfers were relatively easy. The one time I used the subway, I only had to carry my bag up and down about six steps.

As for my back, I wore a thermal heat pack all three days and brought my deflatable back pillow to every meeting. I made sure to keep up with regular doses of acetaminophen and ibuprofen. And I took meticulous care of my hands.

It was a long trip on my own when I wasn’t feeling my best, but successful in the end. As my train pulled into New Haven, where I had parked in the overnight garage, I was exhausted and relieved. I couldn’t wait to get in my car and drive home. But. The one thing I hadn’t planned for, the inevitable travel glitch that had nothing to do with my health issues and everything to do with mindfulness or the lack thereof was this: I’d left an interior light on in my car when I’d parked three days prior, and the battery was dead. An hour later, AAA arrived and charged it right up, thank goodness, but I was not a happy camper during the wait.

Successful travel, especially when you deal with chronic health issues, requires a lot of advance planning. But the unexpected is inevitable. You can be certain I will always check interior light status whenever I leave my car from now on. But the other lesson reinforced from my trip was that I can’t anticipate everything. Nonetheless, when traveling alone, I can trust myself to solve it.

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.

Small Courtesies

Amidst the chaos of wire tapping accusations, North Korean ballistic missile tests, proposed budget cuts to so many important federal programs—including the National Institutes of Health, which fund, among other things, research for cures to diseases like scleroderma—amidst all that and more, plus the minor annoyances of daily life, such as discovering that this blog did not publish properly last week (apologies if you subscribe and received a duplicate of last week’s post), I am trying to focus on something positive to keep my blood pressure from spiking.

Like the fact that the guy behind me in the supermarket check-out line smiled and nodded thanks when I placed the metal spacer bar after my food on the conveyer belt, to make room for his groceries.

Or the way that people I don’t know held a door open for me as I was leaving a building this the weekend.

Or how someone graciously allowed me to make a left hand turn from a side street, across busy city traffic, to get in line in front of him for a stoplight.

Small courtesies, the ways that we acknowledge each other’s needs and feelings without fanfare, are essential to keeping sane. More than that, little acts of consideration are the warp and weft of a civil society. When leaders flaunt basic social norms—like honesty and respect for others with different points of view—it falls to the rest of us to strive even harder to be, yes, polite.

Maybe this sounds silly, trivial, like a schoolmarm’s chiding. Etiquette is one of those subjects that has been shoved into the back closet, mocked as an arcane, snobbish concern over which fork to use at a fancy dinner. Those rules are not my concern here. Rather, I’m referring to the deeper meaning of the word. At this time, in this country, with so much social strife and dissension, it’s well worth remembering the wisdom of etiquette maven Emily Post:

“Consideration for the rights and feelings of others is not merely a rule for behavior in public but the very foundation upon which social life is built.”

Amen to that.

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: Andrew Branch

Storm Tracking

I’ve been staying indoors for much of the past few days. First, we were hit with single-digit, bitter cold and wind. It’s sunny out as I write on Monday afternoon, but still too cold for a much-needed walk. And by this time on Tuesday, I expect to be watching snow swirling and piling all around as a Nor’easter sweeps up the coast. We’re due for 12-18 inches, maybe more.

So much for gliding into spring.

My hands have certainly had enough. Four fingers on the right hand, three on the left, bandaged up because my ulcers and cracked skin won’t heal in cold, dry air, even with the heat on and plenty of clothing layers. I really wish I could use one of those Sick Bay gizmos on the original Star Trek, wave it over my hands and make the ulcers go away.

I wish I could do the same to solve the terrible discord in our country. I read and read and read, trying to stay on top of all the news without driving myself insane. Staying informed is the essential first step. Balancing how to manage my health and energy and anxiety level as I debate how to get involved in preserving our democracy has become a major preoccupation.

What to do? What to do? When we were kids, my older sister used to write comics with a stick figure girl (you could tell because she had a triangle for a skirt) who would ask that question and then, in a lightbulb flash, always declare I have it! with a ready solution to the dilemma. I can’t recall any more of the story lines, but they always made me laugh.

No quick solutions to our national crisis of conscience, no magic tricorder for my hands, no way to avoid a Nor’easter hurtling our way. Nothing to do but sit and watch the snow fall. I will remind myself to be grateful for our warm house and secure roof and full cupboards, for doctors who care about me and insurance to pay for it all. I will give myself permission to plan my personal political commitment in my own time, rather than over-reacting to the outrage du jour. And I will seek comic relief.

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: Jude Beck