Living with Scleroderma

On Thursday, I set out for Philadelphia to spend a long weekend with our younger daughter. Never got Covid from Al, thank goodness, and he was on the mend. There’s no direct route from our Fair City to Philly, and it’s too long for me to drive, so I scheduled a combination of Greyhound and Amtrak. My nine-hour trip was relaxing and went off without a hitch—despite the Polar Vortex that had engulfed the Northeast for several days.

We’d been planning this long weekend for months—visits to art museums, dinners out, crowned by Sunday in New York City, visiting one of my favorite museums and having a special lunch before we went our separate ways back home. The weather forecast looked great for Sunday, warming into the low ’40s.

Friday in Philly was very cold, but we enjoyed a visit to the Woodmere Museum, which features local artists and had some wonderful works on exhibit. Later, I bundled up and we walked the short blocks to a lovely restaurant for dinner. We came home and sat up late, having a long, deep mother-daughter conversation.

The plan was similar for the next day. But by about Noon on Saturday, I started feeling off. As in, I felt like I might faint. Within an hour, I was lying on the floor in the bathroom, plagued by the runs and nausea. My daughter was a wonderful support and pegged the likely cause, a norovirus, which has become rampant this winter season. I rarely get stomach viruses, and I haven’t thrown up in decades, but this was another beast altogether.

My daughter went out to get some electrolytes and easy-to-digest foods, but one sip of the electrolytes had me retching in the bathroom. Over several hours, my GI tract emptied out and I was able to get some rest in bed. But by about 4:30 in the afternoon, I was still feeling off, so I called my PCP’s office back home and spoke to a triage nurse. Was there anything else I should do? After ticking off a full range of symptoms, most of which I did not have (no, this wasn’t a heart attack), she still felt I should go to Urgent Care or an ER, given my other medical conditions, just to be sure I would be okay.

And here is where the American medical system falls short. Given that it was past 5:00 p.m. by the time I finished the call, all but one Urgent Care in the area was already closed. The latter was supposed to be open until 8:00 p.m. I tried calling but got voicemail. So we drove there, anyway, since it was only five minutes away. And it was closed. No explanation, just a sign on the door that said they would be open again Sunday at 10:00 a.m. We were near an ER, but I really did not want to go, because it would have been at least a six-hour ordeal.

So we decided to go back home and see if I could actually hold down some ice cubes or even a little water. If I threw up again, we’d go to an ER. Sucking on an ice cube made me feel woozy again, so we looked online to see if there was another Urgent Care not too far away. We found one, a 20 minute drive, across the New Jersey state line, that was open until 8:00 p.m. But I wanted to be sure they would accept my insurance.

This time, I got a human on the line, who had to check if they would take my Medex supplemental insurance from Blue Cross/Blue Shield of Massachusetts. The answer was no, they didn’t take Medicare supplements, only Medicare Advantage plans.

Now, the problem with Medicare Advantage is that, for someone with a complex medical condition, these plans have a lot of restrictions on in-network physicians. Which is why I’ve held onto my traditional Medicare and Medex plan. This could all become more difficult under the new administration in Washington, which is a deep concern, but that’s a subject for future posts.

In any case, we decided to wait and see how I was doing before going to an ER. I was concerned that I’d run into the same issue with out-of-state insurance, and there was no point risking a five-figure bill for an ER visit unless it was really necessary. I also felt that the advice I got from the triage nurse was overly cautious, so she would not be liable for underestimating my risk.

Fortunately, the gamble paid off. Over the next few hours, I was able to drink nearly a cup of water, and my gut settled down. I slept, with a couple of interruptions, for ten hours. I was able to tolerate Tylenol and antacids before bed. By Sunday morning, I had an appetite again, and by Sunday evening, though still tired, I was feeling like myself. My daughter was doing well, and with any luck, she’ll dodge the bullet of this nasty, fast-moving virus.

We spent the afternoon binge-watching Queer Eye. I took a break to walk to the nearby supermarket and pick up some eggs. I was tired when I got back, but okay. I scheduled a flight home for Monday afternoon, since I was not up for any more long train-bus rides.

I still don’t know how I got this bug. Maybe from public restrooms in bus/train terminals? Or maybe I picked it up before I left home? At least it was short-lived, which is a hallmark of noroviruses. It ruined our wonderful plans, but we still had a meaningful, loving visit. And in the end, other than feeling better again, that’s all that matters.

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.