Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Tick-tick-tick

· · 1 Comment

Friday afternoon, about 4:45. I was trying to wrap up a writing project when Al came home from work at the hospital (he’s a medical social worker). Usually he doesn’t get home on a Friday until 6:00, earliest. He said a brief hello, told me he was cold and needed to go to bed. This is not like him at all. He went upstairs and slept for an hour-and-a-half. When I checked on him, he was restless and very uncomfortable. I had to race out to buy a thermometer, because neither of us ever runs a fever when we get sick. His temp was 102.3°F. And he was starting to cough. Not good.

No way I was going to try to manage this by myself, especially with my hands in such bad shape. So I called our doctor and got the after-hours service. The nurse quickly assessed the situation and told us to come to Urgent Care. It’s been years, fortunately, since we’ve needed such a visit, and our medical group’s Urgent Care set-up has completely changed. We walked into a sleek new facility where you have to sign in on touchscreen computers, not unlike you find in a cell phone store. You plug in the last four digits of your phone, and that’s how you can see on the monitors where you are in the queue. We were number three.

Soon we were processed by the intake nurse, and then there was a short wait until we were shown into an exam room by a friendly male nurse and female medical assistant. Al’s vital signs taken (by this time his temp had dropped about a half degree, thanks to some ibuprofen), we waited maybe 10 minutes until the doctor came in. He was very thorough. The risk here was that Al does not have a spleen, which is part of the immune system. The first year we were married, he contracted mononucleosis and his spleen ruptured, requiring emergency surgery. He came home from the hospital the day before our anniversary—an auspicious conclusion to our first year.

After a slew of blood tests, a chest X-ray and urine sample, we waited around for early results—all negative. So the doctor sent us home with a prescription for an antibiotic as a precaution against any lung complications until all the tests were in.  Al was feeling better and his cough had subsided, so we hoped he just needed rest and time to recuperate.

We both settled in for the evening. Around 10 o’clock, the phone rang, but the caller ID said “United Bank,” so I ignored it. Why would a bank be calling on a Friday night?  I went about my business, did my hour-long routine with my hand care for all my ulcers, and took 200 mg of gabapentin for nerve pain. Then I took a look at the phone. There was a voicemail. By this time, it was about 11:30. The message was from Urgent Care, asking us to call the overnight service. It took me 45 minutes to get through to the clinician on call—Al’s white blood count had come back elevated, sign of a more serious infection, and they wanted us to go to the ER to have him checked out.

So, I woke him up, we both got dressed, and I drove him to his hospital. We arrived close to 1 AM. Now, the ER at Al’s hospital is neither new nor sleek. On a Friday night in July, about 20 other ambulatory patients were sitting around the waiting room in various stages of alertness, diddling with their cell phones. The intake nurse was stressed and busy with a young man on a stretcher who was apparently in and out of consciousness. An old episode of Law & Order (as in Sam Sheppard was the DA) was playing on the TV monitor. We settled in for a long wait.

I was tired, draggy from my meds, and scared. I did a little research on my phone to figure out what Al’s white blood count meant. I tried to find a comfortable position in an uncomfortable seat.  I covered my fingers with my hand warmers, because I was nervous about picking up some kind of infection from the hospital. Al kept himself busy reading a magazine that he’d had the presence of mind to bring along. He wasn’t feverish anymore, thanks to a dose of acetaminophen and one of his new antibiotics. I tried to doze, and I tried to watch a little TV, but the next program was even worse—some ridiculous show about vampire hunters. Really? In an ER? A show about vampires invading a blood bank?

Finally, around 2:40 AM, it was our turn to be seen. Al got to lie down on a gurney, and I scrunched into a chair. At least we had a semblance of a room where they kept the supplies, instead of getting stuck in the hallway. Then came the procession of nurses, physicians assistants, and eventually a doctor to check him out, all requiring repetition of his medical history. I was adamant that they get the test results from Urgent Care, rather than stick him again for the same blood work or do yet another chest X-ray.

This proved a bit more complicated than it should have, because the Urgent Care service is on a different electronic medical record system than the hospital. So we had to wait for a doctor who is affiliated with our medical group to be able to access the results. By the time all of this was accomplished, around 4 AM, Al had been able to get some more sleep, his temperature had come down, and the doctor who saw him thought there was no point in admitting him. He advised that Al stay on the antibiotic for 10 days to account for the infection, though its source was still unclear. We were to follow-up with Urgent Care to get more test results as they became available.

Back home we went, and straight to bed. I finally got a few hours sleep before my hands woke me up around 8:30. I was getting some breakfast when the phone rang. Caller ID: United Bank. This time, I knew enough to pick up (and tell them, later, about that strange misnomer). It was Urgent Care with another test result: Al’s Lyme Disease titre had come back positive. Fortunately, the antibiotic that the doctor had prescribed happens to cover this pernicious bacterial infection. Also fortunately, we caught the disease early. From what we were told, he has every good chance of a full recovery after a 14-day course of the antibiotic. And he’s learned a very important lesson about checking for ticks when he takes a hike in the woods.

Needless to say, it was a real relief to have a definitive answer for his sudden illness, as well as a straightforward cure. He continued to improve through the weekend, saw our internist for follow-up on Monday, and is back to work today.

Here’s hoping we have no more medical surprises anytime soon. And no more close encounters with blood-suckers, be they ticks or ridiculous TV vampires in the middle of the night.

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: Brandon Morgan

Fault Lines

· · Leave a Comment

This past week brought more doctor’s appointments. The culture on my ankle ulcer came back positive for a rare gamma-negative bacteria. And, of course, I’m allergic to the sulfa antibiotic that is the treatment of choice.

So it was time to see my infectious disease specialist. And, of course, he was not available. Another very experienced specialist was covering for him, but when I asked for an appointment, I was told that his next available was in three weeks.

Now, I don’t know if the receptionist really understood what the doctor’s specialty is all about. But I wasn’t about to take no for an answer.

“This is an active infection,” I said. “I have to see him this week.”

She took my phone number and told me someone would get back to me. Soon after, I got a call from one of the nurses, who said the doctor had reviewed my test results and wanted to see me that day. Which I did. He gave me a prescription for a different class of antibiotics, and so far, it seems to be working.

It pays to be assertive, especially when dealing with the medical profession. Over the past three-plus decades, I’ve learned that you have to advocate for yourself. I don’t mean being obnoxious or yelling at hapless appointment secretaries. But medicine involves a lot of gatekeepers, some of whom insist on sticking to rigid rules of access. I do my best to be firm, polite, yet clear about what I need. That requires a willingness to push the envelope.

It also requires creative problem-solving. The other appointment that I needed was to see a wound care specialist. Several of my digital ulcers are somewhere on the skin damage continuum between second and third degree burns. I know they are going to take months more to heal. This is the worst they’ve ever been, and I need some serious advice.

When I saw my podiatrist about my ankle ulcer, he had referred me to the wound care specialist at his hospital, an hour-and-a-half from home. This physician is very good. But when I called for an appointment, I was informed that one of my other doctors, who is familiar with my digital ulcers, would have to send some medical notes.

Enter the world of HIPAA releases. I had two choices: to send records from my Boston Medical Center rheumatologist or from my rheumatologist at home. BMC, I soon discovered, would take 7 to 10 business days to process the written and faxed request. If I went through my local medical center, the request would only take a few days. But there was still the matter of then getting an appointment. All told, I estimated it would be a good month before I could actually be seen. Too long.

So, when I saw the infectious disease specialist last Wednesday, I asked his advice for a wound care specialist at my local hospital. He gave me the name of a vascular surgeon, and I then asked Al, who works at the hospital, to find out what he could. One of his colleagues, another social worker who knows this doctor’s work with patients, gave a sterling recommendation. I called the wound clinic and immediately got an appointment for this coming Thursday.

I’ve learned a great deal from living with scleroderma for three-plus decades about how to get the right care. You have to be tenacious, no matter how lousy you may be feeling that day. You have to understand the complexity of your disease, research about treatments, what’s covered under your insurance, what isn’t, how to find the right physicians, and how to get the answers that will really help you to heal.

And that’s just for starters. At the granular level, managing a chronic “pre-existing condition” is a whole lot more complicated—and stressful, and exhausting (not to mention expensive and time-consuming)—than soundbites or political slogans can ever convey.

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: Zoshua Colah

A Little Progress

· · Leave a Comment

I took a walk around the block Monday afternoon, my first such excursion in three weeks. The weather is starting to clear, and so are my back pain and the sore ulcer on my left ankle. All the leaves have unfurled, and the streets are cloaked in green. Crabapple petals scatter like pink snow on neatly trimmed lawns. The red tulips in our rock garden have bloomed, and the blue hydrangea that Al gave me for my birthday is taking root.

It’s a relief to begin to feel like myself again. Over the past couple of weeks, I was able to rule out a compression fracture in my spine and see a physical therapist who did a thorough evaluation. She confirmed my sense that I had sprained my back. No nerve damage, thank goodness. Heat treatment, the right set of stretching exercises, and a better mix of acetaminophen and ibuprofen are helping me to heal.

As for the ulcers on my ankle and fingers, I received some very good advice from my excellent podiatrist, who also knows a great deal about wound care. Among other things, he gave me some Lidocaine gel that has made a huge difference in my ability to tolerate my ulcer dressings while I wait out the healing process. He also gave me a special mesh infused with silver that is helping my ankle. Silver has natural antibiotic properties, and the results so far are promising. I’m awaiting the outcome of a culture to see if I need additional oral antibiotics.

I plan to get a consult with a wound care specialist sometime in the not-too-distant future for advice about better ways to manage my ulcers. I’ve been using the same approach for decades, and there are new techniques and treatment options that I hope to discover so that my skin doesn’t break down as badly again. No guarantees, of course, but this has really been a siege that I don’t want to repeat, if at all possible.

Meanwhile, the gloomy rain and chilly weather that have encased New England for the past few weeks are about to end. We’re expecting temperatures in the 80s by midweek. It can’t come too soon!

So, here’s to the end of a downright nasty spring. Summer doesn’t officially start for another month or so, but I’m looking forward to Memorial Day. If you’re going through a rough patch yourself, I hope you find the good medical care and healing that you need, too.

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.

Feed the Dragon

· · 2 Comments

This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

Routine Maintenance

· · 6 Comments

On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.

But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.

My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.

I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)

The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.

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.