Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Too Darn Hot

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This past week here in Massachusetts has been hot. Really hot. And humid. As much as I like warm weather, temps in the 90s and high dew points are not my preference. Low 80s with a light breeze and sunshine is my favorite kind of day. Just right for my Raynaud’s, no need for air conditioning, which is a whole other topic (as in, I hate it unless it’s a sweltering 90+ degree day with high humidity).

As it was, I had to break down and put on one of our heat pumps, which doubles as an air conditioner, or I would not have been able to function. The heat pump in our living room is powerful enough to cool the entire first floor. Later in the day, I would turn on the pumps in two of the upstairs bedrooms to reduce the heat that had risen to the second floor. Our attic fan helped, too.

Overall, pretty effective strategy. But the heat still left me feeling drained.

On Monday, I learned that there was another reason that the weather left me dragging. I had a check-up with my wonderful Boston Medical cardiologist, and in the course of our conversation, he told me that one of my medications, a calcium channel blocker, Diltiazam, which has worked miracles for my heart issues, can also make you feel light-headed in high heat. The drug lowers blood pressure, so if you perspire a lot and don’t drink enough fluids, your BP can drop even further.

I never got to the point of feeling faint, but I definitely felt off during the heat wave (and we have another few days on the way). I’m always drinking seltzer, so I never was really dehydrated. But on one day in particular, when I misjudged the humidity and left windows open overnight, I perspired a lot, which I rarely do, and felt more draggy. So, now I know better.

Which brings me to my main point: In extreme heat, which is becoming more common in summers as our planet warms, it’s really important to know how your meds can affect your body’s ability to regulate itself. Here’s a good overview from Scientific American.

So, Dear Reader, please be informed, stay hydrated, and stay as cool as possible during what promises to be another record hot summer. And, when the temps look daunting, here’s a Broadway cast recording of Too Darn Hot by Cole Porter, from the musical Kiss Me Kate, to help you chill. Be well.

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: Library of Congress

The Eyes Have It

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Scleroderma is complex enough on its own, but Sjogren’s Syndrome, which can accompany scleroderma, adds yet another layer of complexity. Sjogren’s is also an autoimmune disease, which typically presents with dry eyes and dry mouth but can cause other internal organ issues. I’ve lived with this for decades alongside scleroderma, and I take medication that manages the dry mouth component. But the dry eyes piece is a whole other challenge.

So I was really thrilled to discover a new (here in the U.S., at least) eye-drop that my dry eye specialist recommended. EvoTears® (Augentropfen) is unlike any eye-drop I’ve used previously. You can barely feel the drops when you use them (which makes it a bit tricky to know if you’ve actually succeeded in getting them in your eyes). As my optometrist explained, they strengthen the oil layer of natural tear film to keep the watery part of tears from evaporating. Given that my eyes barely make tears anymore, I was hopeful.

And the drops work. Brilliantly. The first day I tried them, I actually forgot about my eyes for the whole day, a first in a very long time as my eyes have gotten drier. (As in, even if I need to cry, I rarely can—especially uncomfortable when slicing onions.) I was able to read for several hours without discomfort, to work at my computer without discomfort, even take a walk on a windy day without discomfort.

Over the weekend, I experimented with using them before inserting my scleral lenses, and they seem to keep the area of my eyes beyond the lenses moisturized and more comfortable, a big plus.

However, there is a catch.

EvoTears are only available by prescription in the U.S. A one month supply with my Medicare insurance costs about $180. Meanwhile, in Europe (they are made in Germany), they are sold over the counter and cost about one-tenth of that co-pay.

My optometrist advised me to look on EBay, and sure enough, I found a supplier in Greece. The cost, including shipping, was about $60. My drops arrived within a month of my order (much sooner than the 2-3 month estimate), wrapped in white plastic tape printed with large red Greek letters (no idea what they meant) and a form that stated the shipment had passed U.S. Customs (thank goodness). I had to sign for them.

And so, on our next trip abroad, I will be on the lookout for EvoTears. Meanwhile, I’ll be ordering more from Greece. And maybe at some point in the not-too-distant future, the U.S. healthcare complex will find a way to make these as affordable here as they are abroad.

Not holding my breath.

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: Ed Leszczynski

Butt in Chair

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Writing is one of those pursuits that you need to do sitting down. Of course you can stand or walk around as you dictate text, and I’m sure that as AI gets better, dictation will get easier and more accurate. But having tried dictation software several years ago when my hands were very damaged from ulcers and subsequent surgery, I am not a fan. Speaking sentences taps a different part of my brain than writing with my fingers, either longhand or at a keyboard. I much prefer the fluidity of handwriting or typing.

Standing desks are a non-starter for me, because my feet don’t do well when I stand for long periods. Which means I spend a lot of time at my computer, sitting. This has become more difficult, of late. I have a decent desk chair, with a mesh seat and back that can be adjusted for height and angle. But more and more often, when I get up, my back hurts, especially at the base of my spine. I have to press it with my fist to propel forward and get the pain to ease.

Time for a new chair. But no guarantees that a chair in my price range can solve the problem (I am not about to lay out $500 – $1,000 for a top-of-the-line chair). So I did some research last week about cushions that can relieve coccyx bone pain. And I found one with good reviews, a Balance All-Gel cushion from Medline, which I’ve used previously for their extensive line of wound care products.

This cushion is not cheap. In fact, I could have bought a new chair in my price range for the same amount. But it is a special gel pad that breathes, actually designed for wheelchair users. It’s only two inches thick, compared to other coccyx bone cushions, which are typically much thicker, use some kind of memory foam, and have a cut-out at the back that can relieve the immediate coccyx pain but possibly also aggravate sciatica.

As I write on Monday, it’s the second day I’ve tried it, and the first full day using it as I sit at my computer. I was really not sure yesterday. It seemed hard and kind of weird, because it has a grid inside that feels a bit like sitting on a waffle. But today I’m feeling more confident that I made the right choice. When I stand up, I do not have that soreness in my tailbone. I’m also sitting up straighter, due in part to the cushion and in part to how I adjusted my chair to accommodate it. That’s certainly a plus. The jury is still out, and I’ve saved the boxes it came in, but I am encouraged.

Of course, the obvious solution to all this is to get up more often and move around, so I don’t get too stiff. I also decided to try yoga again, so I signed up for a class later this week.

Aches and pains are all a part of aging, as well as the premature aging that comes with scleroderma. My late father used to say that any problem can be solved if you have the right tools. Certainly a good mindset that continues to guide me through the messy complexity of chronicity. Here’s to you, Dad. Happy Father’s Day.

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.

Workout

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Memorial Day weekend was beautiful and warm here, a fitting beginning to the summer season. Finally, I’ve been able to go out without a jacket or coat, wearing just a sweater for an extra layer, if at all. We’ve had some rain, too, and as a result, everything is growing. Our new cherry tree has dozens of cherries, still green but getting plump. Our new blueberry bushes are filling out, too, and I’m looking forward to picking some berries in coming weeks.

The grass in our reseeded lawn, a nitrogen-restoring mix of fescue and clover, has grown quite tall, too. The clover takes a couple of seasons to establish itself (at which point the lawn becomes low-maintenance) but the grass has definitely taken hold. Meanwhile, Al has been away for the past week, visiting friends out west, returning Thursday morning. The yard is his turf, and he loves to putter outside. But at the rate the grass has been growing, by the time he comes home, I envisioned monkeys swinging from blade to blade. Or, more realistically, a happy neighborhood of deer ticks.

So, I decided that I needed to mow the lawn myself.

Now, I have never done this before. We have an old, gas-powered mulching mower, the kind with a pull starter-cord. It’s not terribly heavy, so I knew I could push it. But I wasn’t really sure how to operate it. So, I asked a mechanically-skilled friend who lives up the street to give me a lesson.

He inspected the oil and gasoline levels and adjusted the height, because I didn’t want to mow too close to the ground and chop off all the clover that has formed. It took him several tries to start the mower, because it had been sitting idle over the winter. Then I tried, but I didn’t have the grip or arm strength to yank it hard and fast enough. So he started it again for me. All I needed to do was grip the bar that controls on/off, push and mow.

Which I did. It was not terribly difficult, but it was not easy, either. The hardest part for my hands was gripping the bar to the mower handle, so it wouldn’t turn off before I was finished. Maneuvering it around our front yard took some pulling and shoving, especially because the grass was at least a foot tall. I worked up quite a sweat. Just as I was almost done, the mower stopped because it had run out of gas. Good timing.

Next step was to use the weed wacker to trim the borders of the lawn, but our extension cord only goes so far, so I had to leave that task only partially done. Also, the weed wacker vibrates intensely, not great for my hands.

After I put everything away, I proudly reviewed my handiwork. I could feel that I’d used muscles in my arms and legs that I haven’t challenged in a long time. It was actually good exercise, which I hadn’t expected. And the front lawn looks better, albeit far from pristine. Thanks to my good neighbor, I learned a new skill. But if I ever have to care for the lawn more often, I will definitely get rid of that old mower and buy a battery-powered version that is less polluting, more energy-efficient, and easier to operate.

That said, I accomplished my goal. And I proved to myself in the process that my hands are still capable of more than I have come to assume over my decades with scleroderma. Well worth the experiment.

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.

Courier Service

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A few weeks ago, I had a series of pulmonary function tests—a routine, annual procedure, just tracking my lungs’ status. I’ve been doing these tests at a local hospital for decades, now, so I continue to do the procedure there to keep a comprehensive record.

Only one problem: the hospital’s electronic medical records do not speak to my providers’ electronic medical records, either here at home or at Boston Medical. So, I have to track down my test results each time, get a printout, and bring them to my Boston Medical pulmonologist for our next appointment.

Now, you might wonder, why not have the tests done at Boston Medical? Their EMR speaks to my local providers’ EMR, and vice versa. And the answer is: I don’t want to have to make yet another trip to Boston for yet another test.

HIPAA regulations do not make this process any easier. As of this PFT appointment, the respiratory tech could not give me any printouts. I signed a bunch of forms to be sure the results got to my local rheumatologist, who had ordered the series for me. I also signed forms to send them to my Boston Medical rheumatologist. But, having learned to be a skeptic about the efficiency of medical systems sharing information with one another, I decided to get a hard copy to bring with me, just in case.

Where to start? Seems like the obvious place would be the hospital’s medical records department. I looked up the number online and placed a call, only to get a message that the number was no longer in service. No info about whom to call or how to get any help. Not encouraging. I contemplated going to the hospital in person, but reconsidered. I was not in the mood to beat my head against the wall.

I knew the results were available, because I had received a message in MyChart to that effect. But when I went to look in my electronic medical record, all I found was a blank page. Aargh.

So I called my local rheumatologist’s office and asked if they could get me a hard copy. Fortunately, I spoke with a very helpful nurse who could see the actual results online (only viewable by the provider, not the patient, for some dumb reason). She put in a request to my rheumatologist to get me a printout.

Lo and behold, a day later, I got a message that the results were waiting for me. All I had to do was drive over to their office and pick them up. I could have had the printout mailed, but I wasn’t sure I’d receive them before my Thursday appointment. And so, on a sunny Monday afternoon, I took time out of a busy day to get my test results, which were, as promised, waiting for me in an envelope with my name on it.

Dealing with a chronic illness requires a lot of managing—not only your own health, but also coordinating all your specialists and keeping track of a ton of information. I’ve been at this for many years, and I take it mostly in stride. But I always wonder: Why does it have to be this complicated? And why can’t I see any test result that is my own when I want to? And why must EMRs from different systems be unable to share my information, even if I authorize it? In 2024?

Sometimes, it feels like yelling into a rain barrel.

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: Lobby Card from the 1925 film “The Pony Express” via Wiki Commons