Priceless

This January marked 30 years since I first met my rheumatologist. Al and I had just married a few weeks earlier. My internist had set up the appointment because my fingers had swollen so much, for no apparent reason, after we ordered our wedding rings, that my ring was too tight when we picked it up at the jeweler’s.

Blood work revealed a positive ANA. I didn’t really know what that meant—that my immune system was attacking healthy tissue—and I almost cancelled the appointment because it seemed like a waste of time.

But that January day, my new rheumatologist explained to me with compassion, patience and insight, chances were that I had either rheumatoid arthritis, lupus or scleroderma. I was in total shock, completely unprepared for such a serious set of options. He answered all my questions, took all the time needed to help me absorb the frightening news. I went home very shaken, but I trusted him.

We were both in our thirties, then. He’s still my go-to guy here at home, complementing my rheumatologist at Boston Medical Center—another wonderful doc who is also now in his sixties. I trust him implicitly, too.

Both of them have followed me for decades, listened to all of my anxieties about this very complex and scary disease, given me excellent advice, understood my aversion to new medications, my fears of hand surgery, my many worries about what’s next. They have encouraged me, cheered my forays into dance classes and Pilates, empathized with my pain from infected ulcers and praised me for my meticulous hand care.

They’ve also given me hard advice that I’ve needed to hear—like the reality check after I gave birth to Emily that it would be far too risky, despite my postpartum delusions about how great it would be to have more babies, to go through it again. “You were really sick,” my hometown rheumatologist told me, straight out. Of course, he was right. I had developed pre-eclampsia at 34 ½ weeks, and by the time I was in labor, my kidneys had shut down and my blood had nearly stopped clotting.

My BMC rheumatologist was the one who pushed me to take exercise seriously in order to stay strong and retain as much range of motion as possible. “Find something you love to do,” was his wise counsel. “That way, you’ll stick with it.”

At a recent visit in Boston, the two of us were joking about the indignities of being mistaken for seniors—but still wanting the senior discount. It will only be a few years until we’ll both be legitimately eligible.

So, in the back of my mind is a new worry: What will I do when these two wonderful physicians, who have been so much a part of my life in coping with this awful disease, finally decide to retire?

It’s no small concern. I know there are other excellent rheumatologists around who are younger, well educated, experienced and will provide fine care. But it won’t be the same.

These two men don’t simply know my diagnosis, blood work, X-rays, pulmonary function tests, echocardiograms, medications, allergies, long history of infections, difficulties with infusions and all the other data points that make up my megabites of digital medical records. They know me. And they genuinely care about me—and I, them.

At some point, I will have to make a transition to a new dynamic duo. I must trust that each of them will hand off to another rheumatologist who will provide a comparable level of excellent care. I’ve been very fortunate to have found them both. I hope my luck will hold, because my scleroderma shows no signs of retiring at 65.

In the meantime, I hope each stays in good health and decides, despite all the frustrations of practicing medicine these days, to stay with it, and with me, for a long time to come. In a health care system where so much is measured by dollars saved, a trusting friendship with your physician who’s helped you manage a long-term, chronic illness for decades is nothing short of priceless.   

Photo Credit: audreyjm529 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.

Comments

  1. Pat Bizzell says:

    I was just talking to you at kiddush the other day about this topic. I was bemoaning the potential retirement of my wonderful local dentist, and also my local rheumatologist–who is the same as yours. He and I haven’t been through as much together, only talking about arthritis here, but I totally agree with your praise of him.

  2. torrie creamer says:

    Hi, so did I read this correctly? You have been living with Scleroderma for 30 years? I was just diagnosed with Raynauds and my ANA test came back postive. I’m so s afed. I have 3 little ones sad a husband. I keep reading the bad and no good.

    • Hi Torrie,

      Yes, I have had scleroderma for at least 30 years. Raynaud’s and a positive ANA can mean many things. I know it’s hard not to imagine the worst, but it’s best to build a relationship with a rheumatologist you can trust. Take it one step at a time. If you have scleroderma, which is unclear from your comment, it can manifest very differently in each individual. There’s a lot of scary information out there on the Internet, but that doesn’t mean it will all happen to you!

      I hope this is helpful. I wish you good care and loving support from family and friends.

  3. Lu-Anne Scheerer says:

    Thank you for your insight and courage to share your story. I started my journey with a positive FANA. I’d had 3 miscarriages and saw a rheumatologist to see if there was a cause he could find…only the FANA. Later it turned into Scleroderma which I’ve dealt with for 20+ years. I am fortunate that I found my doctor earlier so that I could get in to see him right away when my fingers began to swell. He is a gem as well and I have thought about what I will do when he retires. But I’ve just learned in this walk to take each day at a time. Your emails with your blog are inspiring me. Thanks again!

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