Touch

Thumb’s Up

Evelyn Herwitz · March 15, 2016 · Leave a Comment

I’ve been getting clumsier in recent months. I drop all kinds of things—keys, coins, bottle caps, you name it, anything that involves dexterity and a good grip.

The other day I was cooking and picked up a full bottle of olive oil by the top, not realizing the cap was loose. Unable to hold on (fortunately, the bottle was plastic), I dropped it on the kitchen counter, spilling oil all over my favorite cookbook.

The cookbook is now well stained—not a disaster, once I unstuck the pages, since I consider my spattered cookbooks to be well-loved, like the Velveteen Rabbit. But still, I wish I hadn’t made such a mess.

There’s a good explanation for all of this klutziness: My right thumb (I’m right-handed) has built up layers of dead skin over abnormal thickening. It’s gotten so bad that it’s becoming difficult to hold even a pen or pencil. I’ve been tolerating this as best I can, bandaging it and even applying some urea emulsion cream that I got from my podiatrist to try to loosen the layers so I can remove them.

But none of this has really worked, and I realized this winter, when Al’s employee health insurance coverage improved (thank goodness), that it was time to see my (once again affordable) hand surgeon at Boston Medical and get his assessment. I knew my thumb needed debridement, and I knew I couldn’t possibly do it myself.

It took two months to get in to see him, but I finally had my appointment last week. It’s been years since I last needed his help—once to remove stubborn calcinosis from my left thumb that had adhered to the bone, and another time to remove two surgical pins from my right index finger, left from previous hand surgery to correct a severe flexion contracture, which were causing pain.

Seeing him was well worth the wait. He is the antithesis of the stereotypical surgeon—patient, empathetic, willing to discuss all options at length. He took a look and commented that some of the pain I’m experiencing is probably due to more calcium stuck under all those thick layers of skin—right at the pressure point (why I can’t hold onto stuff).

I mentioned my bad reaction to lidocaine with epinephrine when I had calcium removed from the bridge of my nose last month. “I never use that combination with scleroderma patients,” he said. “The epinephrine causes the blood vessels to constrict.” Who knew? My other doc (and his resident, who gave me the shot) should have. And this is why I love my hand surgeon—he understands this disease really well.

He was not gung-ho about operating, because of all the risks of infection and my poor digital blood circulation that exacerbates healing. But he explained the choice as one of two options: either continue to live with it, as best I can, or solve the problem surgically. “That’s what we’re here for,” he said.

We agreed that I’d come back to see him in May, get a hand X-ray and discuss how to proceed. I could either have the surgery later that week or wait until June, when the weather is warmer (I hope), to boost the healing process. I have to balance my desire to take care of this as soon as possible with the most favorable conditions, including adequate time for my thumb to recover, pacing between family celebrations at the beginning and end of May, and anticipated balmy weather.

Of course, I can only guestimate the latter—the day of my appointment, the mercury hit 77° F, a record-breaking day in Boston for early March.

But at least there is a solution in sight. Meanwhile, I’ll just need to be more mindful when I pick up the olive oil bottle, or my house keys, or spare change from my wallet. And give myself a pass next time I drop something else.

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: Tibor Fazakas

Turtling

Evelyn Herwitz · March 8, 2016 · Leave a Comment

I wish I could just roll out of bed and get ready for the day in fifteen minutes. Of course, this has been an impossibility for the better part of thirty years that I’ve had scleroderma. But for whatever reason, lately, I’ve been getting more impatient with the amount of time it takes me to get up in the morning.

Maybe it’s the tease of spring in the air, or the fact that I’m so ready for longer days and shorter nights (at least Daylight Savings Time starts this Sunday).

Or maybe it’s the fact that I have seven digital ulcers right now, which drags out my morning routine.

In any case, there seems no way around the fact that I have to plan at least an-hour-and-a-half, and sometimes two hours, just to get ready for the day.

It starts when my alarm goes off. I don’t wake easily, no matter how well I’ve slept. So I have to plan for a half-hour from the time I set my alarm to the time I actually need to get out of bed, just to give my brain enough time to come to.

After the first of far too many trips to the bathroom (my internal plumbing needs time to wake up, too), I make the bed. It’s how I start moving and stretching and setting everything in order while I clear my mind for the day ahead.

Next I have to wash my tear ducts, first with warm water and then diluted baby shampoo. This is essential so my tears don’t get blocked during the day, a complication of Sjogren’s Syndrome, a secondary autoimmune disease that can accompany scleroderma. It always feels good, and washing my face with warm water followed by skin moisturizer also relaxes my facial skin. (I used to shower in the morning, but it added even more time onto my routine, so now I save that for evening.)

After my eyes are done comes the longest step—hand maintenance:

Remove overnight bandages from my fingers and wash my hands and digital ulcers thoroughly.
Wipe away any adhesive residue with baby oil and wash hands again.
Swipe my fingers with an alcohol wipe. I also clean any mushy ulcers with a dab of hydrogen peroxide.
Prepare all my bandages and cut pieces of absorbant calcium algenate silver dressing to size.
Bandage fingers. Each ulcer takes three layers: Aquaphor ointment, dressing and bandage on top.

Sometimes I’ll do this in silence, as a meditation; other times, I’ll listen to music. Lately, I’ve been reading or listening to election coverage on my iPad while I take care of my fingers. The whole process of bandaging my ulcers takes about a half-hour.

Once I’ve cleaned up all the bandage wrappers and reordered the basket that holds my hand supplies, I take my medications and eye drops. Then I brush my teeth with prescription tartar control toothpaste, an hour before I eat (another maintenance step recommended by my dentist, related both to Sjogren’s issues and trying to hold onto my teeth as long as possible despite root resorption from scleroderma).

Then it’s time for a ten-minute series of stretches that help me to work out any kinks from the night and limber up for the day. Sometimes I’ll listen to music, sometimes not. I try to sit and meditate for a few minutes at the end of my routine, to get centered.

Now it’s finally time to get dressed and put on my makeup, comb my hair, clean my glasses and finish up. This includes using ammonium lactate cream on my feet before I put on socks, to protect my skin from abrasions. The amount of time involved depends on whether I’m just wearing relaxed clothes for work in my home office or dressing up to go to appointments. Skirts or dresses with stockings take longer to put on than a pair of pants and a top. Jewelry can be tricky, since it requires more coordination; I’ve become a scarf aficionado because scarves are easy to put on, colorful and warm.

Downstairs in the kitchen, while heating water for tea, I use a sinus rinse in the adjoining bathroom—another step in Sjogren’s maintenance. And after breakfast, I take my Ibuprofen, for managing joint pain, with some yogurt, which helps my GI tract function better.

It’s a lot to do, a lot to remember. I have my routine worked out as best I can. I wish it weren’t so complicated and often tedious. Sometimes I wonder how I’ll be able to manage all these tasks when I’m older and frailer and need help. Other times I wonder if I’d actually be able to save time if I had some help. But being able to take care of my own needs remains my priority for as long as possible.

So, I keep on plugging. Every morning, I feel like a turtle. Slow and steady, slow and steady.

Image Credit: Bill Sarver

Gym Date

Evelyn Herwitz · February 16, 2016 · 1 Comment

Last time I saw my cardiologist, he made the brilliant suggestion that I try to find an indoor track at a local college, so I can keep up my walking practice when the weather gets too cold. I need the aerobic exercise to build up my endurance and stay strong. His idea was a very good one, especially given the past few days, when the temperature here one morning dropped to -16° F —without the windchill.

As it turns out, there just so happens to be a local college five minutes from our home, where Al earned his master’s many moons ago. So that makes him an alumnus and me a spouse of an alumnus, which gives us access to their wonderful recreation facility—including an indoor track. We also get alumni pricing, which is about a third of the cost of the community gym I had joined last year (and barely used).

So, a couple of weeks ago, Al and I went over to the college on a Thursday night for a tour of the facilities. Now, I’ve read about undergraduate institutions building great health and fitness spaces to attract students. This place is no exception. It’s clean, well-equipped, well-lit, with plenty of exercise options, a beautiful indoor pool and an elevated indoor track that encircles the gym. The track is made of some kind of rubber, so it’s easy on your feet. And we get to use the faculty/staff locker rooms. (Given how long it takes me just to tie on my sneakers, this is a good thing.)

We have since joined and made it to the gym three times together, with Thursday being our date night. Al and I both do the track, though he combines running and walking. I also ride one of the stationary bikes. Al is experimenting with the exercise equipment, weights and swimming laps.

I was a bit wary, at first, of being around all those healthy young undergrads. We certainly stand out, with our 60+ physiques and graying hair, amidst all the cute girls with their perfect thighs and bouncing ponytails, and the cute guys with their flat stomachs and strong shoulders. But the front desk staff have been very polite and welcoming, and no one really pays us much mind. We’re just part of the mix.

That’s fine with me. Actually, I find the youthful vibe invigorating. It’s fun to watch the baseball team as they practice hitting balls against wall mats down in the gym as I walk my laps, or the Frisbee team tossing and catching, or whoever else has the space reserved. I draw energy from the young adults who zoom past me or race on the treadmills in the room with all the stationary bikes. And it’s fun to wave to Al as he speed walks or jogs around me.

We both feel better. And it sure beats feeling trapped inside in sub-zero temps. I still hope to keep walking outside when weather permits. I’ve also found a great Pilates studio for full body workouts once a week. But it’s nice to have a good gym buddy, too—especially when he’s your honey.

Image Credit: Thom W

The Nose Knows

Evelyn Herwitz · February 9, 2016 · 2 Comments

One of the odd and frustrating complexities of my scleroderma is the production of calcium deposits. Typically these grow under my finger tips, at pressure points. And every so often, they rise to the surface—sometimes painfully, sometimes not—until they break through. Their consistency ranges from toothpaste to a pebble. The calcium can ooze out or poke like a pin beneath the skin.

No fun.

Especially when the calcium forms on the bridge of my nose. This has become a chronic issue for the past dozen years. About every two to three years, I’ll develop a lump of calcium large enough that I have to have it surgically removed in order to avoid the risk of a skin break and infection.

And so it was, a week ago Monday, that I went back to my ENT plastic surgeon to have a lump of calcium removed, once again, from my nose. I used to have a theory that the condition was exacerbated by my glasses (my eyes are far too dry from Sjogren’s Syndrome for contact lenses), and I have gone to great lengths and expense to get only the very lightest weight frames. Certainly these are more comfortable. But after this fourth excision, I’m beginning to think that the bridge of my nose is a little calcium deposit factory, and this is just an inevitable maintenance issue that I’ll face again.

I had felt the calcium lump growing for about a year—not huge, just large enough to poke up and stretch the skin. But our insurance policy was not great, and my specialist was in the second tier, with a big deductible. We couldn’t afford the procedure. Then, thank goodness, Al’s health coverage at work changed for the better (not in small part due to a lot of employee complaints and talk of unionizing). So the first week of January, I called for an appointment. Even though I knew I’d have to heal in cold weather, I couldn’t let it grow any larger without risking a skin break.

Al was able to take the day off and go with me to Boston. After about a half hour wait (during which time a woman sat near us in the busy waiting room and began to play her smartphone music without earphones—and no one in charge said a word), I was called in.

Despite the fact that I had specified what I needed done when I made the appointment (with a referral from my rheumatologist), however, no one seemed to know that I wanted my doc to take the thing out that morning. I made my intentions clear, and we got the ball rolling.

My specialist stepped in to see me, recognizing me right away, even though I haven’t seen him in three years. He checked my nose and started explaining the options, but I stopped him and said I wanted to take care of it now. Then he said, “All right, I’ll have one of my associates take care of you.” I looked at him, a bit stunned, straight in the eye, and said, “I really want you to do it.” So he agreed. I don’t know what was going on with communications there, but thank goodness he’s a good guy and a brilliant surgeon. I absolutely would not trust anyone else.

His resident took care of the local anesthesia. One shot, right where the lump lay. I was actually surprised, because the last time I had this done, I think it took at least two shots, and one was in the nostril, itself. Not a pleasant memory.

Only one problem. As soon as she gave me the shot, I began to shake. My heart started racing. Then I felt a pain in my lower gut, which quickly moved to my lower back. When I closed my eyes and tried to steady my breathing, I could see the light behind my eyelids pulsing with my very rapid heartbeat. When the resident came back in the room (she had stepped out for a few minutes), I asked what was in the shot.

Turns out it was Lidocaine plus epinephrine, a combination I have never had before. (The two are combined to make the Lidocaine “stay in place” and work more effectively.) Fortunately, the side effects passed as quickly as they came—but it definitely threw me. Some people are sensitive, my specialist commented. Yup.

Five minutes later, he had popped out the calcium, a pebble about five millimeters in diameter, and stitched me up. “You have a soft nose again,” he said. I was relieved. With a piece of surgical tape over the incision, I walked out into the waiting room and found Al. I was really glad he was there, because the aftereffects of that shot were still making me feel off kilter.

Anesthesia works through my system very slowly. It took about seven hours before it wore off completely, during which time I tried to sleep, couldn’t, even with a Vicodin, I’m sure because of the epinephrine lingering somehow. I did get to sleep, finally, that night, and was nearly back to normal the next day. By Wednesday, I felt like myself again.

The small incision is almost completely healed, a week later. The stitches are absorbing. I have been able to go without any bandage for 24 hours, even as the temperature has dropped into the teens and we’ve gone from springlike conditions to snow storms over the past seven days. It’s great to have that damn calcium pebble out of my nose.

I made notes so I’ll remember what happened and what to watch out for the next time I deal with this. And whenever I require a local anesthetic, you can be sure I’m going to find out what’s in it, ahead of time. Living with chronic disease means being vigilant, informed and a strong advocate for exactly what you need, when you need it. Nothing less will do.

Image Credit: Tamer TATLICI

Mouse Wars

Evelyn Herwitz · January 26, 2016 · 2 Comments

When my daughters were very young, one of their favorite bedtime storybooks was the lovely classic, Goodnight Moon. We had to find the little mouse hiding in each illustration. It didn’t matter how many times we’d read the book. Finding that mouse was the best part.

A little gray mouse in a picture book is fun to find. A real gray mouse is not. Especially when there are a handful and they are running around your kitchen. And living room. And office.

With this week’s bitter cold and stormy weather, mice have decided our home is a nice place to hang out. They like it warm. We have that much in common. I believe they’ve actually been with us for a while, but had kept to our garage, where we made the huge mistake of leaving a big bag of birdseed unattended for more weeks than I want to admit, after it was clear that some critter had chewed a hole through the plastic.

A couple of times last week, I noticed a chubby black mouse racing away from the bag when I went to my car. High time to clean up the mess, so I bought a plastic bin with a tight lid, put on a pair of work gloves to protect my hands, swept away all the dropped seed and tossed it in the back yard for the birds, and sealed up the rest.

Of course, this meant that the chubby mouse was now deprived of its meals. Which drove it into the kitchen. Midweek, I was sitting in the living room and thought I saw something dart across the kitchen floor. I looked again. Nothing there. I dismissed it as a floater in my eye.

But I was right the first time. All of a sudden, in the midst of the weekend’s storm (only three inches here, nothing compared to all the snow farther south), mice started running through our house. I saw two black ones Saturday night as the snow began to accumulate.

What to do? I hated the idea of killing them. I looked up alternatives online. According to the American Humane Society, house mice don’t do well if you release them to the wild. Plus the idea of live-trapping mice and then transporting them to a snowy field somewhere, in bitter cold, seemed a pretty cruel fate (let alone quite time consuming). Mice can carry viruses, bacteria and fleas. I have an autoimmune disease. We decided to go with traps that did the job quickly.

Al caught one mouse in an old fashioned wood trap Sunday morning. No way I could reset it with my hands. He left it set with more cheese before he went out. I settled down to work on writing my novel at the kitchen table. When I looked again, the cheese was gone. No mouse.

Al had to work all day at the hospital. I tried to concentrate, but I kept hearing scrabbling noises, then nothing, from the kitchen. By mid afternoon, at least half a dozen—maybe some were the same mouse, maybe not—had skittered around the first floor of our home. They were making me crazy.

One darted out of my office just as I was talking to my younger daughter on the phone about the invasion. It ran behind Al’s armchair, under the bookcase, into the dining room and disappeared. Another scooted around the kitchen and into a closet. A little mouse poked out from under the fridge and ran away. But then it or another mouse proceeded to squeak and squeal from somewhere behind the fridge. I actually opened the door to make sure it wasn’t somehow trapped inside.

I’d had enough. I went to the hardware store and bought three quick-kill traps that I thought I could manipulate. I came home and set them up with cheese—not before snapping my finger at least once. Not good. Mouse’s revenge, I suppose.

I set them out and went for a walk. The idea of sitting and listening for the traps to snap was making me very uneasy. But no caught mice when I returned. Instead, as I sat in the living room, trying to distract myself with the Sunday New York Times crossword, a gray-and-white mouse suddenly darted from under the bookcase, skirted a nearby trap without so much as a how-dee-doo, and ran through the dining room before exiting somewhere under the counters. Twice, one of the traps in the kitchen went off without catching anything. And there was more squeaking behind the fridge.

Finally I gave up and called Al at work. He was getting ready to come home soon. By the time the Patriots lost to the Broncos, the little mouse was dead. One down. We went out to dinner because I didn’t want to cook in the kitchen. How many more to go? For all I know, we have an entire extended family in our walls and beneath the floorboards. If the traps don’t do the trick, it will be time to call the environmentally responsible critter control experts and pay the price.

Oh, and by the way, there was a bright, full moon this weekend.

Image Credit: Brandon Blinkenberg

Touch

Share this:

Share this:

Share this:

Share this:

Share this: