Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

medication side effects

And Then This Happened

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I have spent far too much time with medical professionals of late. Last Thursday, my blood pressure suddenly spiked. I don’t typically measure it. When it goes too high, I just know. My heart, normally gently beating in the background, pounds in my ears and makes my chest vibrate. Usually this subsides. But on Thursday, I was on a wild roller coaster ride with my circulatory system.

By mid-afternoon, I tried to reach my cardiologist at Boston Medical Center, but couldn’t get through. So I called my local geriatrics team and asked for help. They tried to reach him, too, without success. Given my BP readings (I had finally taken some measurements, which were inching much higher than I had even expected and not helping my angst level), they sent me to the local hospital ED.

I absolutely hate going to the ED. Fortunately, it was not too crowded in the waiting room, and I got a bed pretty quickly. While I was lying there, waiting for someone to come and talk to me, I messaged my BMC cardiologist through MyChart. Within a minute, I got a call from the covering cardiologist, which was a godsend, because the ED doc was then able to consult with her. Scleroderma is so complicated, it really is important to have a team of specialist who know the disease when faced with an emergency.

Long story short—they did a chest X-ray, EKG, and blood work, and the final assessment was that my BP spiked because I had taken an OTC decongestant that morning. I was skeptical, because I’ve used that same decongestant many times without this reaction. But my BP was coming down, so they let me go home after a remarkably short three hours, with instructions to start metoprolol, a beta-blocker go-to med for hypertension.

Fortunately, just as we got home, I got another call from the BMC covering cardiologist, who had finally been able to speak to my guy, who had been covering the ICU that day (hence, hard to reach). He nixed the metoprolol, because it causes vasoconstriction and would aggravate my Raynaud’s. Instead, he recommended losartan. This, he prescribed after we were able to talk on the phone Friday. Like I said, it’s really important to have a specialist who knows this disease.

I wish I could say that’s the happy ending. But my BP is still giving me trouble. It takes time for the losartan to build up in your system. On Monday, after a rough night, I ended up speaking at length with my Boston Medical rheumatologist about where things stood and got more blood work done that afternoon. He was quite reassuring, and we have a plan. But he took me seriously, because hypertension in scleroderma is nothing to fool with.

I definitely felt more at ease after sorting that all out with trusted medical professionals, including the nurses and patient care folks who helped me get through the maze of voicemails, messages, MyChart missives, and phone calls to get the answers and action I needed. This will take more time and patience and care, but if there’s one thing I’ve learned from this disease, it’s that you must be your own best advocate.

Looking forward to a few days by the ocean, with my dear Al, to write and just be.

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. Please view Privacy Policy here.

Image: Олег Мороз

Side Effects

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Last Tuesday afternoon, I got my second shingles vaccination. My first Shingrix shot, back in February, gave me a sore arm with a rash that lasted more than a week. But it was otherwise unremarkable. This time, however, was different.

By bedtime, my arm was achy, per usual after a vaccination. But I had trouble sleeping, waking several times with sore joints and unable to find a comfortable position. In the morning, I was so cold that my teeth were chattering. Very strange sensation. Could not stop until I managed to warm up under sweaters and blankets. For the rest of the day, I was draggy and achy, felt faint a few times, and basically had to lie down a lot. Over-the-counter pain meds helped somewhat. By Thursday I began to perk up, though by afternoon, I started to fade again. It wasn’t until Friday that I felt more like myself.

Annoying as this was (I haven’t felt that crummy in a long time), it was certainly better than getting shingles. I actually had shingles once, a few years ago, but was fortunate enough to ask my PCP about what I thought was a spider bite at a routine check-up. He recognized it as shingles and put me on a week’s course of antiviral medication, which worked very well. I never experienced the debilitating nerve pain from the virus, thank goodness, but I know others who have, and it is no picnic.

Because I’d had shingles, however, I had a long conversation with my Boston Medical rheumatologist about whether the data about the vaccine’s effectiveness actually applied to me, since the research was based only on people who had never had shingles. At that time, he agreed that it was unnecessary. But the vaccine and research have evolved since then, and now my team of docs all recommended getting vaccinated.

I write this not to discourage anyone from getting vaccinated for shingles—just to alert you that the second dose can pack a wallop. Even the pharmacist told me before I received my shot that I might experience “flu-like” symptoms. So give yourself downtime after the shot, in case you have a reaction. And be sure to discuss with your medical team whether a shingles vaccination is appropriate for your personal health needs and any side effects that should be weighed against benefits for your particular situation.

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. Please view Privacy Policy here.

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Getting a Boost

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I got my Covid bivalent booster vaccination last Thursday—Pfizer this time, as opposed to Moderna up until now. I scheduled the shot for mid-afternoon, knowing I could set aside Thursday evening and Friday for down time if I got sick, as expected from past experience.

While I did get draggy and had some achy joints, I was very pleasantly surprised that, this time, the aftermath was not debilitating. No rash at the injection site. No real brain fog (other than my normal age-and-scleroderma baseline). I was able to sleep through the night. I modified my morning exercises to accommodate my sore left arm, but otherwise went about my day, editing a blog for a client, writing more in Novel 2. It was only by late Friday afternoon and evening that I ran out of energy. But by Saturday morning, most of the aches were gone.

I don’t know if this is because I went with Pfizer. From what I’ve read, the two versions are effectively equivalent and highly successful in reducing risk of severe disease from both earlier Covid variants and Omicron BA.5. Maybe there has been something in the Moderna vaccine chemistry that wallops me. In any case, the FDA says it’s fine to mix-and-match the vaccines, so I decided to try Pfizer and see if I could tolerate it better. That seems to be the case.

I chose not to pair the booster with my annual flu shot, because I wanted to get over whatever side effects I’d have from the former before adding in the latter. Now that I’m over 65, I get the super-duper flu shot (a friend called it “the old geezer shot”), and I need to pace myself. So that’s scheduled for this coming Thursday.

Fortunately, it is super easy to get vaccinated. Both shots are free and readily available at many local pharmacies. One piece of advice: don’t count on a walk-in. I thought that would be possible, given all the reports that there has been no run on the bivalent booster, but found out when I arrived without an appointment at my local CVS that I definitely needed one. The online appointment scheduling is simple and takes only about five minutes.

I hope your experience with the bivalent booster goes well. Please don’t wait. Flu season is upon us here in the Northeast, already intensifying in the southern U.S., and new, wily Omicron variants have also hit our shores. We have the tools and a lot more experience than we did two-and-a-half years ago.

Stay safe out there.

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. Please view Privacy Policy here.

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The Nose Knows

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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.

maya-1214706-639x424Especially 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.

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: Tamer TATLICI

In the Belly of the Beast

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There’s no such thing as a non-invasive test. Some are just more invasive than others.

Last week I found myself inside a clanging, banging, buzzing, bleeping MRI machine, undergoing a 25-minute diagnostic that was probably unnecessary, one of those just-in-case procedures you occasionally have to endure because one of your specialists needs to validate a hypothesis and define a baseline.

I’d had an MRI once before, at Boston Medical, lying on my back with a pair of headphones, listening to Ray Charles. The procedure was longer, but the music was good enough to distract me from the machine’s clanging, so the time passed relatively quickly.

Not so last week at an outpatient facility near home. First of all, the position was uncomfortable. I had to lie on my stomach, head in a padded masseuse-like cushion, arms forward, another pad pressed against my abdomen, ankles draped over some kind of wedge, like a swimmer frozen in a dead man’s float. Secondly, the music was lousy—a choice between two stations I dislike (pop rock versus easy listening) on headphones with poor reception. So equipped, unable to see around me, with an IV in my arm and a rubber squeeze ball to grasp in case of emergency, I slid backwards into the MRI’s gullet.

Buzzing soon commenced. Through the headphones, I could hear the tech’s voice alerting me that this first scan would take five minutes. BEEEEP. BANG-BANG-BANG-BANG. I could barely hear the music because of all the static in the headphones, let alone all that banging and clanging, and the song wasn’t anything I really wanted to listen to in the first place, but I hung onto the notes so as not to start feeling claustrophobic.

CLANG-CLANG-CLANG-CLANG. The music ended and the announcer started jabbering, followed by a lot of commercials that sounded like gibberish. I tried to figure out how many more of the five minutes were left by counting the number of ads. Finally, a moment of silence inside the machine.

BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. Another series of scans. I did my best to keep breathing without moving anything I wasn’t supposed to move. This was not easy, especially with the pad compressing my diaphragm. I practiced Pilates breathing, expanding the sides of my rib cage. I wondered if either of the techs had ever gone through this procedure. I decided this should be part of every MRI tech’s training.

The tech’s voice in my headphones informed me that she was now going to insert the contrast dye through the IV. I might feel a cool tingling, but if I took a few deep breaths, the sensation would pass. BEEEEEEEEEEP. BANG-BANG-BANG-BANG. Somewhere in the background, I could hear Billy Joel’s “Just the Way You Are.”

I tried to monitor the progression of the slightly cool dye through my veins. I have an allergy to certain contrast dyes, but I had been assured this was very safe. BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. So far, so good. I tried to focus on the barely audible lyrics as the machine moved through a series of five scans, grateful for the brief silences between each cacophonous set.

More commercials. Next up, “I’m Never Gonna Dance Again.” Yuck. The voice in the headphones said this was going to be the last set, a two minute scan. Thank goodness. BLEEP-BLEEP-BLEEP-BLEEP-BLEEP.

All of a sudden, I felt flushed and unable to get a full breath. I tried to calm myself, but my breathing was too shallow. I squeezed the rubber ball several times. The tech and her assistant were both in my headphones, slightly annoyed. This was the final scan, just two minutes left, what was wrong? “I feel like I’m going to faint,” I said, twice. The machine stopped. A door opened. I moved forward. Someone took my hand, probably the assistant. The tech reassured me it couldn’t be a reaction to the dye, I’d had it seven minutes ago and been fine, it was like aspirin, it would just pass through my system. The weird sensation lifted, and I was able to breathe fully again. Back into the belly of the monster.

BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP. Not a procedure for anyone with a propensity for migraines. I told myself it would be over soon and marveled at how anyone in their right mind could think all these decibels should be tolerated for the sake of more medical data points.

At last, blessed peace. The awful radio music ended, too. I could feel myself moving out into the open air of the room. As the tech removed the IV catheter, she noticed my bandaged fingers.

“Are you a nail biter?”

“No, I have scleroderma.”

“Oh.” Silence. She had no clue what I was talking about.

I sat up, slowly, feeling groggy. The assistant brought me a bottle of apple juice. I took a few sips and wondered aloud why the machine was so noisy. The tech explained that it had to do with the various levels of magnetic resonance. Then she added, “A man made it. That’s why it doesn’t work right.”

I was still a little woozy getting dressed, but relieved to slip my wedding ring back in place. Fresh air felt wonderful. I took another sip of juice as I relaxed into my car seat, Symphony Hall playing on my satellite radio, then realized I’d forgotten to ask when the test results would be available. But I didn’t really care. I’d hear soon enough.

Down the street was a car wash. No one was in line. As my Prius drifted gently into the dark, automated cavern, I lay back, listening to Brahms, drinking my juice, and watched the clear, fine spray wash the last traces of late winter’s grime from my windshield.

Photo Credit: digital cat  via Compfight cc

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.