Until Next Time

I’ve had a lot of doctor’s appointments, lately. This seems to happen every couple of months. They come in clusters of scheduled follow-up appointments, with an occasional diagnostic test or blood work or acute care visit thrown into the mix.

In a period of about two weeks, I’ve met with or will soon meet with my cardiologist, uro-gynecologist, rheumatologist and podiatrist—all regular, periodic check-ups. In addition, I met last week with an infectious disease specialist to get a better handle on how to deal with my all-too-frequent digital ulcer infections. This was on top of a couple of phone consults to discuss a nasty infection in my left thumb that has, fortunately, healed after two weeks of oral antibiotics.

It’s gotten to the point that I bought a notebook to keep track of all the information I learn with each visit. I used to be able to keep it all in my head, but no more. It’s simply too much detail, and my brain just doesn’t work that way post-menopause. Plus, sometimes my docs read test results differently, and their assessments need to be squared with each other. And I ask a lot of questions.

In addition to the notebook, I always bring something to read. And I never arrive the prescribed 15 minutes early, because I’ve learned that chances of any doctor running on time is next to zero, and I don’t want to add time to the wait. So I aim for arriving right on the dot. Then I usually wait at least a half-hour to be seen. I’ve taken to bringing my Kindle, so I can flip around from one book to another, depending on my mood. Sometimes I bring work, as well. Having something interesting and worthwhile to do helps minimize the frustration of losing control of my time.

My only other rules for doctor’s appointments are to dress in layers to deal with overly air-conditioned exam rooms, and to dress well. There’s something about walking into the doctor’s office and looking my best that helps me cope with being there in the first place. So much of our conversations are about what part of my body may not be working right, that if I make myself look good, I feel better about myself and not owned by my scleroderma.

At least, until I leave the appointment and start to absorb the latest assessment. I have wonderful, supportive physicians who are great about taking the time to answer all of my many detailed questions. But the news is usually mixed, and the list of potential complications keeps growing. I often find that it takes the rest of the day to put everything in perspective and keep anxiety about the future in check.

By morning I regain my equilibrium, refocus on my writing and family and project work, and let my scleroderma concerns drift into the background of my days. Until my next acute episode or my next doctor’s appointment.

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.

Comments

  1. Patricia Bizzell says:

    This post shows so poignantly what it’s like to deal with a chronic illness. As usual, you show yourself to be admirably adaptive and practical. The note book idea seems essential, I should probably start doing that. In re. bringing your Kindle, yes, I never go to any appointment without something to read and the Kindle nicely enables variety. I also bring layers to guard against air conditioning, of which I am not a big fan anyway, but your idea of dressing spiffily is new to me. I get it. Makes me also think of your earlier post about wanting some remedy for the supposed “puppet” lines on your face (which of course I never noticed). Also reminds me of my mother in the nursing home, visiting its hairdressing salon every week and getting her nails done. That’s brave.

  2. Thanks, Pat. I got into the habit of dressing well for doctor’s appointments a long time ago, when I noticed how I not only feel better about myself, but I’m treated with more respect that way. Not that my physicians are ever unprofessional, but I think it helps me avoid sliding into the role of “sick person.” I present as a whole individual and am treated as such.

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