I often think how grateful I am to live within an hour’s drive of Boston, home to some of the world’s best medical experts. It’s a major advantage to have access not only to rheumatologists who specialize in the complexities of scleroderma, but also to cardiologists, pulmonologists, hand surgeons and myriad other specialists who have seen enough patients with scleroderma to understand all the problematic permutations of the disease.
One of my specialists that I value most is my podiatrist. The man has literally saved my feet. Scleroderma causes thinning of the fat pads in your soles, and walking can become quite painful without proper orthotics. Before I began seeing him about five years ago, I was beginning to limp, not only because my natural cushioning was wearing away, but also because the skin on the bottom of my feet was stiffening and cracking and developing corns that I could not remove.
The first thing he explained was that I needed cushiony, full-sole orthotics, as opposed to the hard, three-quarter kind that had been prescribed by a less knowledgeable podiatrist about a year earlier. He then put me on a schedule of monthly visits and regular use of prescription-strength ammonium lactate cream to soften my skin. He also recommended shoe brands that could accommodate the orthotics. I’ve since discovered Merrell and Clarks, my two go-to brands that make comfortable, attractive, lightweight shoes with removable insoles.
Thanks to my podiatrist’s attentive care, my feet healed, and for the most part, I’m able to get around with a nimble stride. I see him every six weeks to trim my toenails (this has also become pretty difficult, as my handgrip has weakened and my eyesight is not what it used to be), shave calluses and corns, and stay on top of the calcinosis that has developed in a couple of toes.
So, when he decided several months ago to move from Boston Medical Center to South Shore Hospital, I decided to follow him. The drive, I reasoned, would be about the same length of time—longer in terms of miles, but comparable when you factor in the traffic volume typically encountered when driving into Boston versus approaching the Cape.
However, my last visit, this past week, took an hour-and-a-half to get to his office, an hour in the waiting room (growing pains for the new practice), and would have taken another hour-and-a-half to get home if I hadn’t paired the appointment with other personal business in Boston that afternoon. All told, a four-hour commitment to take care of my feet.
That’s a lot of time. In essence, every six weeks I need to spend a half-day to be sure I can keep walking. Well worth it. But still, a lot of time.
And that’s just one of a handful of regular appointments I need to keep in order to stay as healthy as possible. Most are in Boston. Most take a half-day because of travel and waiting time.
When I get annoyed by the many hours required to keep on top of all this, I remind myself that there are others who have to travel much farther to benefit from this level of quality care. I try to look at it as time that I devote to myself. I listen to classical music on the radio as I drive and use the mental space to problem-solve projects I’m working on, much as I used to do when I commuted regularly to Boston for my former job. I often bring reading material for the waiting room that builds my writing or marketing skills, so I can make the most of any delays.
Still, it’s a lot of time. And there are weeks when appointments stack up and I feel like I can’t get anything done. Working for myself these past three years makes it easier, since I don’t have to explain time out of the office to my boss anymore. But there are many other things I’d rather be doing than driving over a hundred miles roundtrip to see my docs every few weeks.
That’s when I daydream about a Star-Trek-like medical center, where your doctors just wave a medical tricorder over your body to diagnose your illness and cure you of same.
Beam me up, Scotty.
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.