Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Swelter Skelter

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It takes a lot for me to sweat. I rarely get that overheated, since my body revels in warm weather, even hot. But humidity is another matter altogether.

July 4th weekend here in Central Massachusetts, the air was thick. The sweat was literally pouring down my face. That sensation is so rare for me, I was surprised. I had an annoying cough, too, so I wondered if that had something to do with it. Was it the air quality or a cold that was irritating my lungs? Why was I sweating so much?

The TV meteorologist had a simple answer: The humidity was so bad, it was “disgusting.” Agreed.

Disgusting enough for me to turn on our heat pumps, which double as dehumidifiers and A/C when it gets really bad. I hate A/C, because it inevitably makes my extremities numb, and avoid it at all costs, but I was perspiring so much that I finally caved. After a few hours, the house was bearable. By Saturday evening, thunderstorms had rolled through and taken care of the rest. Sunday, the weather was a blessing, and we opened the windows again.

On Monday, as I write, I’m back to my usual summer gear, a sweater over light clothes. I can sit at my computer and regulate the temperature in my home office to my precise needs. Outside, it’s in the high ’70s, sunny and dry. No need for anything but window screens and fresh air.

Now there’s mounting evidence that some of my aversion to air conditioning has nothing to do with scleroderma and Raynaud’s, and everything to do with gender.

According to a recent study, researchers at the University of Southern California and the WZB Berlin Social Science Center found that women perform better on verbal and math skills tests as the temperature rises. Women college students in Berlin improved test scores by 1.76 percent for every Celsius degree increase. And when indoor temperatures were raised from the 60s to 70s (Fahrenheit), their math test scores increased by 15 percent.

Any woman who has struggled to function in a frigid office space during the summer, wrapped in heavy sweaters or even winter coats, with a space heater under her desk, because the A/C is cranked to near refrigerator temperatures, recognizes the truth in this finding. (If this sounds all too familiar, feel free to cite this study to the Powers That Be. Here’s the full report.) I used to suffer in an office like that, and one of the great joys of working for myself is that I no longer have to put up with such energy-sucking practices.

So, I’m grateful to have an option when the humidity and heat overwhelm even me. But I’m also glad that I’m the one who gets to regulate the thermostat.

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. Please view Privacy Policy here.

Image: Vitor Pinto

Curios

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It took me twenty years, but I finally set up my collection of curios this past Sunday. We had packed up my lovely figurines when we moved to our current home in June of 1999, and they had remained boxed ever since.

It’s not that I didn’t care about them anymore. Quite the contrary, each piece is quite special. But I kept putting off the task, and putting it off, and putting it off—because I was afraid I wouldn’t be able to do it without dropping and breaking them. My fingers just aren’t that nimble anymore.

I began collecting glass animals when I was a kid. Every summer, our family would vacation on Cape Cod, and one of the highlights of the trip was a visit to a store in Hyannis where an artist would manipulate sticks of glass over a bunsen burner to create whimsical creatures. If my parents had let me, I would have watched him for hours. Among my favorite purchases with allowance saved for weeks were a white horse rearing on its hind legs, a pair of pink elephants, a tiny red hippo, a dove, a turquoise dolphin.

At some point along the way, I was given my paternal grandfather’s collection of miniatures. These included two painted metal orchestras—one made up of frogs, and the other of monkeys, elephants, foxes and a devilish conductor. There were some carved wooden figurines, and some of carved ivory, as well. Eventually I found an enclosed glass curio box and displayed them in the living room of our prior home for many years.

I missed them. But with all the bandages and ulcers and Raynaud’s and hand surgery, I just couldn’t get myself to risk displaying them again. That is, until this past year, when I began keeping a Bullet Journal, which is a great system for keeping track of just about anything you need to get done. For my list of things I wanted to accomplish around the house, I added in setting up my curio collection.

Now, you can keep pushing off items in a Bullet Journal and rewriting them in the next week’s or month’s to-do list. But after rewriting an item enough times, you realize that either you should take it off the list, or just do it, already. Given that June marked the twentieth anniversary of our move, it really was high time to take care of it.

So last week, I found the box with my collection, marked “fragile,” on the top shelf of my closet. It was filled with plastic ziplock bags, each containing about ten figurines, carefully wrapped in tissues. But where was the curio display box? Upstairs, downstairs, in the basement I searched, to no avail. Then Al came home, and within a half-hour, found it in the basement—in a box marked “glass box.” Well.

The glass box was in perfect shape, cushioned by yellowed newspapers from June 1999. I figured out a good spot to hang it in the living room, measured the box and marked the wall, and tried to hammer a picture hook at the correct spot. It slipped and dropped to the floor. I tried again, using a pair of needle-nosed pliers to hold the nail. This time I was able to start it, but the angle was wrong as I tapped with a tack hammer. Time to ask for help if I wanted to finish before dark. Al took care of the hooks and hanging the box.

Now it was time to place the figurines. As I unwrapped each one, it was like meeting old friends. Using a pair of round-nosed pliers from my jewelry-making supplies, I was able to place them without too much trouble. That is, until one piece, a green glass octopus, slipped, bounced on the floor and disappeared. I stopped myself from trying to move things around to find it, since I didn’t want to cause any more damage or knock another figurine out of the box. The whole process took several hours. Finally, when everything was in place, I poked around on the floor. There was the octopus, lodged between some CDs in Al’s music collection—in tact!

So, now all my little friends are back on display. I took my time, worked my way around the dexterity issue with the right tools, and didn’t break anything. And I can finally take that task off my list.

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. Please view Privacy Policy here.

Summer Solstice

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At Stonehenge in England this past Friday, about 10,000 people gathered to watch the sun rise in perfect alignment with the entrance to the ancient stone circle. The summer solstice has come and gone in the Northern Hemisphere. Even as we mark the beginning of warm summer months, the days are now growing shorter once again.

Somehow, I wish the days could just stay longer for a little while. Even as we have months of (I hope) balmy weather ahead, there’s something that always makes me a little sad when the solstice passes, and our half of the Earth begins to tip every so slowly away from the sun for the next six months. It’s all in my head, I know. But still.

My hands and feet are just so much happier during the long days of summer. That is, of course, so long as I stay out of overly air-conditioned buildings. I took advantage of a sale this past week and got some new wrist warmers to add to my collection—as essential in the summer when stores and restaurants insist on maintaining arctic temperatures, as in the winter when arctic air blows into New England from Canada.

At least I can now take my neighborhood walks without a jacket or even a sweater. It’s easier to get out the door for appointments, too. Less stuff to put on.

Time to savor summer, even as daylight slowly dwindles.

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. Please view Privacy Policy here.

Image: Hello I’m Nik

Lemonade

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Al is back home, from Israel, and so am I, from a lovely weekend in Florida with cousins I had never met. Last fall, my second cousin contacted me out of the blue, having found me online (this, we agreed, was both amazing and a little creepy, given how much information is out there that we don’t know about) to send me a host of family memorabilia she had saved from her parents’ home when she moved them to live near her a few years ago. That message evolved into a correspondence over the winter, and this weekend I went to meet her and her nonagenarian parents for the first time.

We had a great visit. And I’ll write about that for a future post. But what I want to write about today is my crazy travel experience, no thanks to American Airlines.

All went smoothly on Friday for the first leg of my trip, from Boston to Charlotte, N.C. But as soon as our flight landed, I received a text from American that my connecting flight had been cancelled. They automatically rebooked me . . . on a flight to northwest Florida that left close to 10:00 p.m. This would not do, as it would have been a nine hour layover. Fortunately, I was able to get on a flight that left closer to 6:00 p.m., and the time zone switch saved another hour at my cousin’s end. She was most understanding, and so now I had just five hours to kill.

Then I remembered: a friend and former colleague of mine from my days as a college marketing director lives in Charlotte. On a whim, I sent her a message. Maybe she’d be available to get together? Total long shot. But, as I was finishing lunch in the airport’s huge atrium, I received a text back. Not only was she available—she was on her way to the airport with her family, heading for a weekend family graduation get-together! What are the odds? I met her at the gate for her flight, and we spent a wonderful hour catching up. Hadn’t seen each other in 14 years.

My rebooked flight boarded about an hour later, and soon I met my cousin and was off on our family reunion adventure.

Sunday afternoon, my cousin dropped me off at the airport to return to Boston. I’d been saying auf Wiedersehen instead of goodbye, because her parents were originally from Germany, like the rest of my mother’s family—it means until we see each other again. I didn’t realize how literal that would become.

The gate for my flight back to Charlotte was jammed, not only with travelers for my 4:00 p.m. flight, but with unhappy travelers for the earlier flight to the same destination who were now delayed and on standby for my flight. But our flight didn’t board. And didn’t board. And didn’t board.

The story we were told was that the flight attendants had not yet arrived (although they were apparently staying at a nearby hotel). When I asked the gate attendant what was going on, he said, “If I told you the story, you wouldn’t believe me.” “Try me,” I said. But he wouldn’t take the bait. He did, however, help me to rebook my flight for the next day. By the time I left the airport with my cousin, who kindly put me up for another night, the flight still hadn’t taken off. According to my Flight Aware app, it eventually landed four minutes after my (also delayed) connecting flight departed.

Now, the complicating factor was that Al was returning home from Israel on Monday evening, and I was planning to pick him up at Logan. But my new schedule meant that I’d get back to Boston (if all went well) at 5:00 p.m. No time to go home and come back. Instead, however, I worked out an arrangement with the van service I had planned to take back on Sunday, to pick us both up Monday evening. Since Al was flying Air Canada, he was arriving at the same domestic air terminal as I was, from Charlotte. Fortunately, I was able to store my carry-on in one of the last overhead spaces on my flight (I was in boarding group 8) so I could stay inside the main terminal, have dinner, and just meet him at the exit point for Air Canada, as opposed to hanging around baggage claim.

Amazingly, this time, my AA flights went like clockwork, and Al’s long-haul flight to Montreal and return to Boston did, also. We both made it through large airports for our connections. I had a nice meal at Legal Seafood. And we got to ride home together without me having to drive, a good thing, because I was pretty tired.

So, that’s how I spent my weekend. Glad to be back. Glad I went. Glad it all worked out so well, in the end.

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. Please view Privacy Policy here.

Image: Francesca Hotchin

Home Alone

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Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets home.

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. Please view Privacy Policy here.

Image: Vlad Tchompalov