Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Holy Grail

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For more than a year, I’ve been trying to figure out how to get a high-end wound dressing called Hyalomatrix Wound Device. Several years ago, my podiatrist gave me a sample while the product was still in development by researchers in Italy. This dressing contains hyaluronic acid, which occurs naturally in the body and aids in formation of new skin. I had tried using it very successfully on an ankle ulcer that had refused to heal. It was the only thing that worked.

I have only a tiny bit left of that sample, which I’ve been rationing on my six deep digital ulcers. Once again, it seems to be the one thing that is helping my skin to regenerate as the large scabs very slowly recede. So, I’m anxious to get my hands on some more (or rather, some more on my hands).

For reasons unknown — perhaps I wasn’t persistent enough, or perhaps Medline, the company that manufactures this product, updated their website only recently — I could not find a way to reach a human being at the company who could tell me how to order it. That is, until last week, when I finally figured out how to get through. I spoke both to catalog sales as well as their home care team.

When I say this product is high-end, I’m not kidding. Although they wouldn’t give me an exact price over the phone, they also would not sell it to me because it costs in the four figures, and that certainly exceeds my budget, as well as the company’s ceiling for direct sales to individuals. I need to get it via a prescription. This led me to call my insurance company to see if they would even cover it. To my surprise, the service rep thought it might be possible – but I would need prior authorization.

So this created the next challenge: which of my docs to ask? The most obvious starting place was the vascular surgeon at the Wound Care Center who has seen me twice since May. She is a great physician, very supportive and knowledgeable. However, despite my best efforts, which included sending her detailed information about the wound care product, research backing it up and a prior authorization form, for reasons that I still don’t understand, she handed me off to the Wound Care Center and would not submit the form on my behalf. Honestly, I think she was too busy to actually read what I asked her to do. The Wound Care Center staff looked into it and discovered that their supplier does not carry this particular product. Dead-end.

I was certainly not about to give up. So Monday afternoon, at a previously scheduled appointment with my Boston Medical Center rheumatologist, I shared my digital ulcer saga and all the information. He was glad to go ahead and submit the form and write me a prescription if I get approval. I also asked him to please ask for an expedited review, to avoid the average 15-day wait for a response from the insurance company.

We have known each other for several decades, now. So much of getting what you need depends on good, long-term relationships with your health care providers. Fingers crossed (at least, metaphorically) that I’ll get approval and be able to fill the prescription ASAP. To be continued . . .

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.

Tick-tick-tick

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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

Spaced Out

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Adding a new medication to my mix always makes me wary. So it was that I approached my recent appointment with my neurologist with some trepidation, as well as a list of drugs I’d researched that can be used to treat the nerve pain reported herein that has been plaguing my ulcerated fingers.

The options boil down to two classes of drugs: certain antidepressants and certain anticonvulsants. Those groupings, alone, gave me pause. I found the classifications intimidating. Plus, there are a lot of side effects associated with either. I brought a chart I created, based on an article I found on the Harvard Health website, to my appointment.

We discussed all the options and potential issues. He recommended the same medication that my internist had suggested when I had seen him for my annual physical a few days prior: gabapentin, also known as Neurontin. Although this medication is used to treat epileptic seizures, it also is commonly prescribed for the kind of nerve pain I’ve been experiencing. My familiarity with this drug dates back 18 years, when my mother was dying of cancer and Neurontin was one of the meds she was given by the hospice staff to manage her pain. Not the most positive association.

However, my neurologist felt that gabapentin has the fewest interaction effects with other medications I’m taking, and also is not as likely to cause dry mouth as the antidepressants. This, of course, is a major consideration, given that I have Sjogren’s syndrome. So I agreed to give it a try. (I must admit, though, that the notion of taking an antidepressant right now, with all the craziness in the world, had its appeal.)

He wrote the prescription to enable me to go up to 300 mg a day, but said to start with one 100 mg pill at night and see how I felt. Being the researcher than I am, of course I looked up all the possible side effects to be sure I knew what to watch for.

And this is where too much information can sometimes be a hindrance. There is a long list of scary side effects, including, but not limited to: clumsiness, unsteadiness, dizziness, fatigue, issues with memory, trembling or shaking, depression and suicidal thoughts. Alrighty then. . .

Of course, the problem with lists like this is that you have no idea what the research is for each symptom. Just seeing the list or hearing it, as in all those annoying drug commercials on TV, tells you absolutely nothing about the real risks of any particular side effect. Here, at least, is one resource that gives some sense of side-effect frequency.

The only real way to find out was to try the medication. So I did. At the 100 mg level,  I felt woozy at first, then my body adjusted. However, there was no real relief from the nerve pain. So after several days, I bumped up to the 200 mg level. Once again, fatigue was the main side effect until my body adjusted. This time, I began to notice some pain relief, but not really enough to block all of the sporadic electric shocks in my fingers.

So, on Friday I emailed my neurologist and asked him what he thought about going up to the full 300 mg. He wrote back that evening, encouraging me to try it for a week at that level. If I felt lousy or it didn’t work, then it would be time to try a different medication.

Once again, fatigue and grogginess were the main immediate side effects of a higher dosage. I also experienced a less-reported symptom of sensitive teeth for the first couple of days. I’m not alone in this. I found comments online exploring the issue in various forums. Leave it to me to have an unusual side effect. On the plus side, however, the shocks in my fingers have subsided significantly.

What is not resolving easily is the extreme sensitivity in the new skin that is forming where the ulcer scabs are beginning to recede. This is a major issue when I change my bandages twice a day. More research and another visit to my vascular surgeon/wound specialist are in the works.

I am trying to accept that there are just no easy solutions to this endurance challenge. I hate feeling like a space cadet from the medication, and I wish I could stabilize my hands, already, even as I know it will take months for the ulcers to heal. I continue to be proactive about finding new ways to manage. At the same time, I’m realizing that I have to adjust to a new baseline of white noise discomfort in my hands in order to get through it.

That, and remind myself to find the humor in all the ridiculous interpretations of my spoken words by my Dragon software. No, I really didn’t mean “dictator umpire” when I said digital ulcer!

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: NASA

3-2-1

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The house is very quiet again. Over the weekend, Al helped Emily, our youngest, move to a new apartment in a new city. She had started her new job a few weeks ago, and come home for a quick visit to collect her furniture and pack up the rest of her belongings. This, following a year-plus search for the right first step in a career in higher education, working with students with disabilities. She found the perfect fit, and we couldn’t be happier for her.

But I will admit, as the U-Haul pulled out of our driveway, I got teary. This was it. She’s launched. Our eldest, Mindi, has been working for almost two years as an early intervention social worker in Greater Boston. So now, both of our daughters, very capable and dedicated young women, are on their own.

It’s one of the big goals of parenthood. We made it.

And the house is very quiet again. I find myself at a bit of a loss for how to fill the silence. It’s different this time from when our daughters were in college and then graduate school. Our home was still the common ground, the place everyone would always return to. Now, for both of them, it will be the place to visit. This is as it should be, but it still feels strange.

Some of this emptiness also derives from the fact that I cannot use my hands in the way I’m used to. My go-to instinct when I’m alone is always to make things, whether it be my writing or sewing or weaving or cooking up something special for dinner. Writing is now much slower with dictation software. The other activities must wait until my digital ulcers make more progress toward healing. I’m relying on Al for a lot of help to do the most basic tasks, from chopping vegetables to opening all sorts of containers. He has been a wonderful support, and I am very grateful for his willingness to do whatever I ask, but I wish I didn’t have to.

I started new medication to ease nerve pain, and it’s taking a bit of adjusting—finding the right dose and adapting to the side effects. The healing process is complicated. I’m back on antibiotics, once again. All of this and the need to constantly problem-solve simple tasks is tiring and leaves me feeling more vulnerable.

On the plus side, it’s finally summer. We ate our first meal on the deck Monday night. The oppressive humidity of the past few days has finally eased, and it will be a comfortable night for sleeping. My bandages have stopped glomming to my fingers as the air has dried out. This evening, as I write, I think (I hope) that my new medication is beginning to take the edge off the neuropathy in my hands.

On to the next chapter.

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.

Dispatch from the Trenches

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First, the good news . . .

Here’s what I discovered about my strained back over the past week: it’s really important to assess all factors that may have contributed to the injury in April. I originally thought that I had somehow hurt my back during a weeklong respiratory virus that involved too much coughing and sneezing. This was logical enough, because the coughing and sneezing—particularly the sneezing—immediately preceded the night when I stepped out of the car and struggled to walk.

What didn’t make sense was the amount of time it was taking to heal—going on 10 weeks, now, including a lot of rest, heat packs and physical therapy. Then I began to question something very basic: my desk chair.

I have had this chair for years. It’s a good office chair, but it doesn’t fit me quite right. I had bought a mesh lumbar back support a few weeks ago, but it wasn’t helping. So I decided it was time to try out some alternatives. Lo and behold, a very affordable mesh office chair with good lumbar support felt just right. I bought it, Al and I put it together, and I have been using it for more than a week. My back is almost back to normal. Eureka!

I’m still doing my back exercises, and I’m starting to take walks again to build up my stamina. All of this is a tremendous relief.

I wish I could say the same thing about my hands. It’s been one of those weeks when I wish I could unscrew my hands and set them aside to heal while I used a spare pair. There is no easy solution to the five very deep ulcers on my fingers, two on the left hand and three on the right. They are healing at a glacial pace, despite the arrival of summer. This past weekend, things began to deteriorate. Although, so far (knock on wood) I’ve avoided infections, I have developed nerve pain that feels like occasional, random electrical shocks in various fingers. No warning. Extremely upsetting.

In addition, it seems that I have also developed a reaction to the lidocaine gel that was so helpful over the past few weeks in minimizing pain. My skin began burning and looked very irritated. So I’ve been punting with steroid cream and antihistamines, awaiting upcoming doctor’s appointments.

Fortunately, I was able to schedule a last-minute appointment with my neurologist this Wednesday, whom I’ve had no reason to see for the past five years, to discuss pain management. I also discovered a promising ointment for healing skin ulcers that is backed by encouraging research; it’s supposed to arrive later today, and if it works, I will report back.

The bottom line is this: these ulcers will simply take months to heal. There is no getting around it, no magic Eureka moment when I realize I can change one element in my environment and make it all go away. I’ve consulted with an excellent wound care specialist and know that my care routine is solid. Now I need a good pain management regimen that doesn’t knock me out or cause other negative side effects, in order to go the distance, however long that may be.

I’m trying to be patient. I’m trying to be creative. I’m trying.

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: Breno Machado