Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

Turn Around

· · 2 Comments

Most TV commercials, with their caffeinated, in-your-face blasts of sound and image, don’t stick in my brain like the ones from my ’60s childhood—the Madmen era of jingles and story-telling song ads.

There was one in particular that still tugs, a Kodak photo montage of a little girl growing up to become a young mother. The soundtrack—acoustic guitar and treacly male vocal—was “Where Are You Going?”, written in 1957 by Harry Belafonte, Malvina Reynolds and Alan Greene:

Where are you going, my little one, little one,
Where are you going, my baby, my own?
Turn around, and you’re two,
Turn around, and you’re four.
Turn around, and you’re a young girl, going out of my door. . . .

The Season I finale of Madmen alludes to this iconic commercial, when Don Draper lands an account with Eastman Kodak by creating a nostalgic slide show of his own family on the new Kodak Carousel—projecting the images he desperately wishes were true, even as he’s the architect of his marriage’s tragic demise.

Life is never so simple as we’d like it to be. I used to hate that Kodak commercial, because it was cloying and gave me a lump in my throat whenever I watched it. I didn’t like being manipulated by the images and the music, but it sucked me in, every time.

The commercial surfaced in my mind this week, as Emily returned to college for her junior year. She headed back on Sunday because she’s responsible for a freshman dorm once again (her first gig was this past spring, managing the high drama of an all-girl frosh dorm).

This, she informed us, was her last summer at home. And I have no doubt, she’s ready to live away on her own. In the two short months she spent with us, she was busy interning as a psychology research assistant, measuring math skill acquisition in preschoolers; baking some amazing desserts (strawberry rhubarb pie, raspberry lemonade squares, brownie drop cookies); sewing a dress with only some guidance from me and fitting assistance from a great seamstress I know; hanging out with friends; babysitting; working out (10-mile bike rides and mile-long swims); reading good books; catching up on favorite TV series; prepping for a tutorial this fall; and generally managing all of her personal affairs with great efficiency.

We spent a wonderful family day on Block Island and a great mother-daughter day on the Cape in Provincetown, visiting galleries, window shopping, buying hats and going to Race Point, then having dinner at the Yarmouthport inn where my family used to vacation when I was a kid. We saw Moonrise Kingdom. We enjoyed a Carrie Moyer retrospective at the Worcester Art Museum. We talked late at night. And we butted heads, mostly over stupid stuff, navigating—sometimes with quiet negotiation, sometimes yelling—the inevitable land-mined boundaries between mothers and grown daughters.

Twenty years ago, Em was a petite 5-month-old, delicate, kitten-like, just reaching the size of an average infant. She was born nearly 6 weeks early, only 3 pounds, 6 ounces, during a March snowstorm that prevented my obstetrician from reaching the hospital, at the end of a high risk pregnancy that culminated in pre-eclampsia, induced labor and a weeklong hospital stay.

We had known that she would need to arrive early. She was small for her gestational age, because my scleroderma was restricting my ability to deliver nutrients through my placenta. But the delivery schedule tightened further when I developed stomach pains on a Sunday and learned the next day at my check-up that my blood pressure had soared and I was spilling protein into my urine.

Reduced to a rag doll by magnesium sulfate to minimize risk of seizures, I lay around in my hospital bed, wondering what was next. Mindi, our oldest, had come to us through the gift of adoption. Getting pregnant had involved nearly a year of tapering down on d-Penicillamine, which I believe reversed my skin’s relentless tightening, and months of infertility work-ups and procedures.

I was scared. As I began the Petosin drip to induce what would become 19 hours of labor, I felt like I was falling off a cliff. A song from one of Mindi’s favorite videotapes, Rogers and Hammerstein’s Cinderella, looped endlessly through my head—In my own little corner, in my own little room, I can be whatever I want to be.

I didn’t really see Emily until the day after she was born, so tiny in her NICU isolette, her head no bigger than a delicious apple, feet no longer than my thumb. It would be a full month before she could come home at 4.5 pounds, and another month of concerted effort and help from a lactation specialist before she finally managed to nurse.

Turn around. The Em who agreed that we’d have a more peaceful goodbye if she drove back to school with just her dad is a gifted, bright, beautiful young woman, well on her way to making it on her own. We’ve come a long, long distance since she loved to be carried around, snuggling deep into her “bubble bag” sling wherever we went. There will be, God-willing, more great times together, and without doubt, more land-mined mother-daughter boundaries to cross. But I’m glad for her, very glad, that her last summer at home was a great one.

Turn around.

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.

 

You Know It’s Time for Vacation When . . .

· · 2 Comments

  • Your brain turns to sludge at the thought of starting a new project.
  • You would rather pet your dog than write another blog post.
  • You don’t care if your desk is a disaster area and how much more efficient you could be if you just cleared it off.
  • You begin drafting your “out of office” message a week before you’re out of the office.
  • You devote your creative problem-solving skills to convincing the family that it would be nice to go out to dinner for pizza instead of cooking something nutritious.
  • You find a dozen different fascinating questions to research online that have nothing to do with what’s left on your to-do list.
  • You stop adding items to your to-do list because you don’t want to do any of them.
  • Your body starts malfunctioning in all sorts of strange ways just days before you’re scheduled to leave town, causing you to need yet one more doctor’s appointment.
  • You can’t stand the idea of yet one more doctor’s appointment and try to talk yourself out of your symptoms.
  • You go to the doctor’s office after crying about your symptoms to your spouse and find out everything is stress-related and it’s time for vacation.

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.

Get a Grip

· · Leave a Comment

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?

· · 4 Comments

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.

 

Until Next Time

· · 2 Comments

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.