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

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

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.

While the Soup Simmers

I’m writing on Sunday night, as the Egyptian potato soup simmers on the stove and our community radio station plays a Middle Eastern mix. I’ve been cooking all day for our Monday night Passover seder, and I’m feeling good. A lot better than I anticipated this morning, when I woke with pain in my ulcers, an aching foot and one thought: How am I going to get through the cooking marathon today?

I groused at Al. I rubbed my temples. I studied the long list of fruits and vegetables that I needed to buy before lunch and realized I’d forgotten to ask Al to pick up one key ingredient from the kosher market in Brookline (an hour’s drive from home) several weeks ago.

He suggested checking the Passover aisle at our local supermarket, just in case they had those kosher-for-Passover hearts of palm. I agreed, then thought of an alternative in case they didn’t. I knew Al stood ready to serve as sous-chef, as need, for all the chopping and peeling ahead. Time to dive in.

To my astonishment, when I got to the store, the Passover aisle was still well-stocked, including hearts of palm—three cans, even. I moved on to the second supermarket and filled my cart with fresh strawberries, blueberries, blackberries, bananas, a mango, avocados, cauliflowers, leeks, romaine lettuce, potatoes, beets, onions, garlic, celery, parsley, asparagus, baby spinach, eggplants. At the check-out, the cashier admired my choices and told me how much he loves vegetables (except eggplants). I told him how to enjoy beets in a salad (add gorgonzola and toasted walnuts).

By the time I got back home, Al had switched over our kitchen to all of our Passover dishes—the culmination of several days of cleaning and preparation. We went out for a quick lunch, and then I began cooking in earnest. The night before, I’d already started the pickled salmon, which marinates for a couple of days. Next up was curried eggplant. I was able to do all the peeling and chopping myself while Al worked on the yard.

Then came the Egyptian haroset, a mixture of dates, golden raisins, ground almonds and sugar syrup. Only one problem: when I placed the mixture in my little Passover food processor, it wouldn’t turn on. I tried another electrical outlet. No go. I asked Al to try it. Maybe I hadn’t aligned it properly. Zip. Four o’clock in the afternoon, and it was time for another run to Target.

I opted for an immersion blender and picked up a few other cooking items to make life easier for the rest of the week. Before we left for dinner, the haroset was well blended, cooked to perfection and chilling in the refrigerator.

By 7:30, I was back in the kitchen, separating nine eggs for the apricot sponge cake and cursing at the little pieces of eggshell that had dropped into the whites. But I persisted. Al helped me fold the meringue into the batter, the one part of the recipe I can no longer do.

Now the sponge cake rests upside down in its tube pan, cooling overnight. The asparagus are happily plumped with water, standing tall in their pan until it’s time to steam them tomorrow afternoon. The potatoes and leeks and celery and garlic and turmeric, salt, pepper, bay leaf and water have finished simmering in the time it took me to write, and the lovely mix is now cooling in the 70-year-old white enamelware that was once my mother-in-law’s Passover soup pot. Just need to add the fresh lemon juice before serving.

All that’s left for tomorrow are the spinach-cheese patties, the avocado-tomato-hearts-of-palm-pesto salad, the roasted cauliflower, the boiled eggs and the seder plate. That’s the easy stuff.

The prospect of cooking for Passover, with my once-a-year set of dishes, the crazy schedule, and the inevitable stuff that goes wrong, always overwhelms—especially because the holiday falls in the spring, when my ulcers are at their worst. But somehow, it always works out. And tastes great. And provides a beautiful setting for our seder. This year, more than ever, I am grateful that I can still make a splendid feast for family and friends, and focus on what really matters: what it means to be free.

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.

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

Guilty Pleasures

That old saw about New England weather—just wait a minute, it will change—holds true now more than ever. After what seemed like an onslaught of snow and ice, we suddenly were treated to a major thaw. Temperatures last week rose to the high 60’s. Only lumps and clumps of snow remain, blackened by car exhaust and grit. Friday afternoon, I went food shopping wearing just a sweater to keep me warm.

We’re back to seasonable 40’s for a few days, then more balmy temperatures. Some find this anxiety-provoking. Record-breaking warmth is more evidence that climate change is real. I worry about this, too. News reports are frightening: severe drought in some parts of the world versus severe flooding elsewhere, melting ice caps, reduced ocean oxygen levels, bleached coral reefs, declining biodiversity, extreme storms—how will our precious planet survive?

But I must admit, on a purely personal, very selfish level—I really enjoy the warmer weather. I can’t help it. I just feel so much better when the temperature goes above 60 degrees Fahrenheit. My whole body relaxes. My ulcers heal. And I don’t have to go anywhere beyond my front door.

Don’t get me wrong. I believe we must do everything possible to slow the trend of global warming. There is far too much reliable scientific evidence that without serious efforts to reduce human production of greenhouse gasses, the ice caps will continue to melt, ocean levels will continue to rise, too many species will die before they can adapt to rapid climate change, food production will be disrupted . . . the list of dislocation and natural disasters goes on and on.

Knowing all that, doing my best to recycle and reduce my carbon footprint and support public policy that promotes responsible environmental stewardship . . . I still can’t help it. I won’t go so far as to wish for oceanfront property in Central Massachusetts. But I’ll take a warm day in February over ice and snow, any 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.

Image Credit: Miriams-Fotos

Think Warm Thoughts

It’s really cold out. My hands are not happy. Six ulcers on my fingers and a tenacious one on my left ankle tingle and smart. The good news: even though we’re in the teens today, by Wednesday, it’s supposed to go up to the 50s. Welcome to New England.

As I await the warming trend, it’s nice to remember our long New Year’s weekend in St. Petersburg, Florida. Were we really at the beach one week ago? I have the pictures to prove it. So, I share with you, Dear Reader, some highlights of our trip. I hope these bring a little warmth into your day. Enjoy. . . .

At the Dali Museum, which features the works of Spanish surrealist painter Salvador Dali, a special exhibit explored the life and paintings of Frida Kahlo, a 20th century Mexican artist who broke new ground for women painters. I found her life’s story especially moving: she suffered a serious accident at 18 that caused her great pain and many surgeries over her lifetime, but her art enabled her to find meaning in her struggles and to express herself in a universal language.

While Dali’s paintings of melting clocks and dreamscapes are his best known works, I preferred these two examples of his early paintings.

Outside the Dali Museum, visitors tie their entrance wristbands to a bedecked tree. The strips of colored tags luff in the breeze.

The Morean Arts Center includes a collection of glass sculptures by Dale Chihuly. His exuberant use of color and form creates a mesmerizing, whimsical kaleidoscope.

Around the corner, the Center includes a glass blowing workshop. We enjoyed the demonstration, which resulted in a free form glass bowl.

We met ibises in the afternoon . . .

. . . and pelicans at sunset.

St. Pete Beach offered a chance to relax and pretend that winter didn’t exist.

Back home, there is snow on the ground and ice on the sidewalks. It will all be gone by week’s end. I know there’s more on the way. I just need to remember . . . think warm thoughts.

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.

Ain’t That a Groove

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Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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: Hoàng Duy Lê

Vacation Override

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

pills-1417417-639x462Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

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.