Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Get a Grip

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Last week, a small, black dot appeared in my right eye. No matter which way I looked, the dot moved with my eye, right in my line of sight. I figured it was a floater, one of those annoying little bits of vitreous gel that break away from your retina as you age, liquify and cast a shadow inside your eye. Nothing to worry about.

But it was in the way when I tried to read. And I’d never had one before, and its sudden appearance was unnerving. So, after putting up with it for a few days, I did some research and realized that this sudden onset required a check-up to be sure I wasn’t at risk for a retinal tear.

Of course, because I waited until later in the week, my optometrist was away for the Fourth of July weekend. It never fails that something odd and worrysome happens to me when it’s Friday night or a holiday.

Fortunately, I was able to get an appointment with another good eye doctor for late Friday afternoon, and he did a thorough check of my eyes from every angle. And, of course, the little dot had vanished. Just like that weird clicking noise in your engine that goes silent as soon as you bring in your car for a service check.

But he took me seriously, anyway, diagnosed it as an “incipient vitreous detachment” and told me to have a follow-up with my own optometrist in a month. And, he warned, if you see any more floaters, you need to be checked right away, because the vitreous gel could be tugging at the retina around the optic nerve and cause a tear. If you have blurred vision, see any sparks of light or have pain, you need to be seen immediately. The longer you wait, the greater the risk of permanent vision loss.

Necessary advice, but not great words for the anxiety-prone. So, naturally, on Sunday, I started noticing more floaters in my right eye. Not solid black ones, like the unwanted visitor that appeared last week, but pale, ringlike apparitions swimming around whenever I looked at the sky or a page in a book or my computer screen—like the amoebae you see in a drop of water under a microscope in high school biology, ghostlike, barely visible, until you know what to look for.

I thought, they’ve been here all along, and you’re just noticing them because you’re paying closer attention.

I thought, they’re new since last week and you’re going to have a retinal tear when you’re away on vacation.

I thought, this is ridiculous.

I thought, now you know what to blog about this week.

I thought, call your optometrist first thing Monday morning.

I took Ginger for a walk and made a nice summer dinner of gazpacho and a broccoli-rice-chickpea-carrot salad, with gorgonzola cheese and craisins, to take my mind off my eye.

Just as I finished cooking and turned to put the salad in the refrigerator, the bowl slipped from my grasp. Half the salad spilled on the floor. I dropped the f-bomb about a dozen times, then decided that the floor was clean enough, follow the 10-second rule of contact, the vinegar will kill any germs, and quickly scooped up as much as I could, put it back in the bowl and invited Ginger to lick up the rest. Which she did, with enthusiasm.

My meditation teacher says the one thing we can count on is that everything changes. I can’t keep the floaters from appearing in my eye. I can’t always keep a grip on a bowl full of food. I might have more vision problems on our Maine island vacation. It’s scary. Scleroderma is scary. Life is scary.

All I can do is give myself a hug, take a deep breath, pay attention, and deal.

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.

Now, Can We Please Move On?

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Many, many words have already been written on this subject, so I’ll keep this short. But I’m extraordinarily grateful that the Supreme Court upheld the Affordable Care Act (ACA) last Thursday. In fact, I’m still amazed that we’ve reached this point in the health care debate—or rather, the health care wrangle.

I’m grateful because I have a complicated, pre-existing condition (great euphemism, that) and if it weren’t for Al’s health insurance through his employer, I’d be in deep, deep trouble. God-forbid he loses his job. I honestly don’t know how we would manage to cover all of the doctor’s visits, diagnostics and medications, let alone a hospitalization.

So now, at least, there’s hope that my health insurance coverage won’t always depend on his employment.

I’m also grateful that our two daughters will remain covered until they turn 26. It’s hard enough for someone fresh out of college to find a decent job, let alone a job with good health benefits. By the time Mindi, our oldest, turns 26, the rest of the ACA will be in place.

Unless, of course, Romney wins and the GOP succeeds in unravelling it.

This is not to say that the legislation is perfect. And I do understand and share deep concerns about our country’s debt, the opposition’s core concern. But to trash everything that’s been accomplished and start from scratch so that one party can claim victory over another would be an incredible waste of time and tax payer dollars, with absolutely no guarantee of a better outcome. We need to work with what is now law and make refinements as the many elements go into effect. We need to address any real problems based on actual experience, not hyped-up claims.

But there is so much misinformation passing for truth about this law, so much harsh, mean-spirited rhetoric, so much ends-justify-the-means politics undercutting our ability to solve serious problems in this country, that I’ve felt very discouraged as the election heats up.

Until last Thursday, when a conservative Supreme Court Justice joined his liberal colleagues and demonstrated what it means to make a decision based on principle.

So, can we please move on, now? Can we stop hurling invectives and actually have a civil discourse about how to get this country back on track? Can we put good minds together, especially when we disagree, to find creative solutions, rather than undercut each other in the race for power and control?

Maybe that’s asking too much. But if we don’t all work hard to find common ground, affordable health care for all Americans will be the least of our worries.

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.

 

Heat Wave

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In India, “cold weather” is merely a conventional phrase and has come into use through the necessity of having some way to distinguish between weather which will melt a brass door-knob and weather which will only make it mushy.
—Mark Twain, Following the Equator

It’s been extraordinarily hot in India in recent days, and here in Massachusetts, as well—not hot enough to melt brass door-knobs, but close. Temperatures in Delhi neared 109 degrees Fahrenheit over the weekend. We weren’t that far behind. I was in Cambridge on Thursday, and my Prius recorded 99 degrees outside around 7:00 p.m.

Normally, I enjoy hot weather. Summer is my time of year. My Raynaud’s quiets down, and my hands are comfortable most of the day. My ulcers heal. But last week’s record-breaking heat wave was too much, even for me. I hardly ever break into a sweat, but I was perspiring rivers.

We New Englanders are fond of saying if you don’t like the weather here, just wait a few minutes. Not so last week, when the heat wave locked in for nearly three solid days. I was grateful to be in air conditioning, which I usually can’t stand.

I used to work in an office that was so cold in the summer, those of us with slighter builds would walk around in heavy sweaters and, sometimes, coats. What amazed me (to put it mildly) was that we had to put up with it. Some of my co-workers had heftier physiques and thrived in the cold. Some were men, who just seem to burn hotter than women (and who always, especially the heftier variety, seemed to be in charge of the computer program that ran the heating and cooling system). Some had normal internal thermostats, unlike myself. Whatever the reason, the majority didn’t want it any warmer. Some complained it wasn’t cold enough. This, despite the need to conserve energy and finances. The shivering ones among us were told to put on sweaters and deal. Infuriating. One of the many reasons I’m glad to be working for myself, now.

When you have severe Raynaud’s and finger ulcers, air conditioning isn’t just a nuisance. It hurts. More than winter’s chill, because you can’t escape the cold in the space where you need to do your work, keep your appointments or shop for food. Your blood vessels contract and your ulcers smart like crazy.

I always carry layers with me in the summer—a sweater and my Wristies, which are great fleece hand-warmers. This usually does the trick. But it’s a constant balancing act, because my hands can turn blue even if it’s in the ’80s and a breeze starts blowing. Summertime is all about managing relative temperature changes, more than absolute temperature. Except above 90 degrees.

At home, we have no air conditioning, just ceiling fans and window screens. Al is fine with it, concerned for my health and glad to save money on our electric bill. Our daughters both grew up with no AC and understand my issues with staying warm. For most of the summer, this works well—except on days like the end of last week.

It was so hot (how hot was it?) that I went to the grocery store without a sweater to protect me from the freezer section. I never do this. I hate grocery shopping because the stores are so cold, they make me feel sick from numbness. It was so hot that I had to put my Aquafor ointment in the refrigerator so it wouldn’t turn to soup when I squeezed it onto my finger ulcers. It was so hot that I blasted the AC in my car at 68 degrees and directed the vents onto my face and neck to clear my logy brain.

Today, we’re back to normal, whatever that means with global warming on the rise—another rainy June day, thunderstorms, temperatures in the ‘70s. Later in the week, it’s supposed to creep up to 90 again. It’s going to be an interesting summer.

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.

Until Next Time

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I’ve had a lot of doctor’s appointments, lately. This seems to happen every couple of months. They come in clusters of scheduled follow-up appointments, with an occasional diagnostic test or blood work or acute care visit thrown into the mix.

In a period of about two weeks, I’ve met with or will soon meet with my cardiologist, uro-gynecologist, rheumatologist and podiatrist—all regular, periodic check-ups. In addition, I met last week with an infectious disease specialist to get a better handle on how to deal with my all-too-frequent digital ulcer infections. This was on top of a couple of phone consults to discuss a nasty infection in my left thumb that has, fortunately, healed after two weeks of oral antibiotics.

It’s gotten to the point that I bought a notebook to keep track of all the information I learn with each visit. I used to be able to keep it all in my head, but no more. It’s simply too much detail, and my brain just doesn’t work that way post-menopause. Plus, sometimes my docs read test results differently, and their assessments need to be squared with each other. And I ask a lot of questions.

In addition to the notebook, I always bring something to read. And I never arrive the prescribed 15 minutes early, because I’ve learned that chances of any doctor running on time is next to zero, and I don’t want to add time to the wait. So I aim for arriving right on the dot. Then I usually wait at least a half-hour to be seen. I’ve taken to bringing my Kindle, so I can flip around from one book to another, depending on my mood. Sometimes I bring work, as well. Having something interesting and worthwhile to do helps minimize the frustration of losing control of my time.

My only other rules for doctor’s appointments are to dress in layers to deal with overly air-conditioned exam rooms, and to dress well. There’s something about walking into the doctor’s office and looking my best that helps me cope with being there in the first place. So much of our conversations are about what part of my body may not be working right, that if I make myself look good, I feel better about myself and not owned by my scleroderma.

At least, until I leave the appointment and start to absorb the latest assessment. I have wonderful, supportive physicians who are great about taking the time to answer all of my many detailed questions. But the news is usually mixed, and the list of potential complications keeps growing. I often find that it takes the rest of the day to put everything in perspective and keep anxiety about the future in check.

By morning I regain my equilibrium, refocus on my writing and family and project work, and let my scleroderma concerns drift into the background of my days. Until my next acute episode or my next doctor’s appointment.

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.

Zen and the Art of Saori Weaving

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Back and forth, back and forth, I slide the shuttle that holds the bobbin that’s wound with the thread that creates the weft that fills the warp that blends into fabric I weave by hand, to make up my scarf as I go.

Tonight is my fourth Saori weaving lesson. So far, I’ve learned how to wind my warp (the long, vertical threads that define the width and lengthwise pattern for my scarf), thread one end of the warp through the reed (the metal comb that holds each thread in place, in the order I define), thread the warp tails through the heddle (two rows of wire guides that divide the warp, so one set of alternating threads moves up while the other moves down), wind a bobbin with weft fiber, and pass the weft shuttle horizontally through the warp, shifting the heddle with foot peddles and beating the weft into place. I’ve also learned how to change weft bobbins, how to pick up a second weft color freestyle and how to add “treasures”—slubs of fiber inserted at random for color accents.

It sounds complicated, but it’s actually quite intuitive, once you get the feel of it. And feeling is what Saori weaving is all about.

This modern Japanese weaving method, created by Misao Jo in the late ‘60s, nurtures individual expression and creativity. Saori looms are simpler to thread and manipulate than traditional looms, and they have adaptive attachments to facilitate weavers with disabilities.

Last week, my instructor, Mihoko, added a narrow shelf to my loom so that I could slide my wooden shuttle back and forth without having to hold it—an advantage when my hands get tired. I use a small pair of tweezers that I always carry to manipulate threads in-between the warp. Mihoko helps with knot-tying and other tasks that I find too difficult. The loom is easy to understand, and the parts take little pressure to maneuver. Nothing hurts.

But what I like the most about this new-found art form is the way you can do just about anything with the fibers, within the constraints of interlocking threads. You can leave gaps in the warp or the weft to create an airy pattern. You can interlace new colors and tufts of fiber or cloth or whatever other kind of material you want, so long as the warp is strong enough. You can break a warp thread—by accident or intent—and weave knotted tails of your repaired warp right into the piece.

Mistakes, imperfections—these are what make the fabric personal, unique and fascinating. Accepting and encouraging exploration and individual vision is the art form’s core philosophy. In Saori weaving, flaws don’t exist.

It’s a welcome break from my daily worries about how I’m going to balance my writing and health and all the necessary hard work of building a consulting practice. And a great reminder of the value of taking risks, making mistakes, and staying clear and focused about what’s important.

Tonight, when I pick up where I left off last week, I’m going to shift the weft from dusty roses to slate blues. I’m going to play more with free-style design and whatever else occurs to me in the moment. When I weave, I’m totally focused on what’s right in front of me, figuring it out as I pass the shuttle and shift the heddle. I can only understand the pattern as I make it happen. And I’m doing it with my own two hands.

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.