Tom talks about dealing with an adult diagnosis of atopic dermatitis
So far as I know, I didn’t have eczema until September 1988, when I turned 54 years old. I had no history of hay fever or skin conditions or asthma.
My wife Carolyn and I were on a short holiday to Santa Fe, New Mexico. I was taking a shower before going to dinner when my whole back began itching and burning. I ran the water as hot as I could stand, to relieve the itch. When I got out of the shower, I saw what looked like millions of red bumps all over my back, just like chicken pox. I didn’t know what it was and I certainly didn’t know that I did the wrong thing using hot water. Now I know tepid water is for eczema.
Several days later we flew home. I had a four-inch-wide strip of oozing clear juice around my waist. It soaked my blue button-down oxford dress shirt.
The next day, I went to the dermatologist. The prescription was the 10-day prednisone regime, gradually reducing the intake. Magic! It all was cleared up, for a while. Then it came back several months later, and again the 10-day prednisone routine. This went on for several years with the clear intervals varying in length, and then shortening and then not existing.
My legs looked like they were molted skin. I was a trial lawyer by profession. When I would take a deposition in a conference room, the rug below my chair looked like someone had spilled a box of oatmeal. I recall spending a weekend at a friend’s vacation home at Bodega Bay. I put towels over the sheets where I slept to collect the skin flakes, tossing it before we left.
I was on prednisone for several years. Longtime usage, I later learned, causes problems. Sometime thereafter I had rotator cuff surgery on the right shoulder. The orthopedic surgeon said he could barely find enough tissue to reconnect the muscles, which he attributed to my long-term prednisone use. Now, some 20 years later, I can hardly raise my hand cupped with shampoo to the top of my head to wash my hair. Both my rotator cuffs have become so compromised as to be marginally operable.
A new treatment
In the late 90s, I saw Dr. Jon Hanifin in Portland, Oregon. He took me off prednisone and put me on cyclosporin. I regularly saw a nephrologist to monitor impact on the kidneys. Over time my symptoms improved and by 2003, I was able to wean off the cyclosporin.
Work and eczema
I remember driving to San Jose from my home in Palo Alto for an arbitration hearing when my back started to burn. It was an eczema flare-up. I rubbed my back against the driver’s seat much of the 16-mile journey in an effort to calm the fire. This only aggravated my eczema. I arrived and proceeded with the hearing as my back continued to burn. Then my ankles began to burn too. There I was, taking testimony, ruling on objections to the admission of evidence and trying to concentrate, though my body was burning.
I wondered what counsel and their clients thought as they saw me rock back left and right against my chair and reach down to scratch my ankles. Both parties had much at stake and were depending on me to render a fair award. I struggled to do that and despite the pain, I believe I succeeded.
Eczema and bleeding
Easy and frequent bleeding is a constant companion to eczema. Bed sheets, clothes, all take notice. The slightest scratching can set it off. One time I was on an arbitration panel in San Francisco when I scratched somewhere (can’t remember where) on my face. Nonstop bleeding resulted. I carry bandages in my wallet for just such a situation. While everyone watched, I applied a tissue and all my wallet bandages. The hearing continued and the bleeding finally stopped. I think I did order a brief recess to get to that point.
Another time we were having dinner at a recommended restaurant. A steady flow of blood developed from my arm. I used one napkin, then another, and finally fled to the men’s room to stop the bleeding. The restaurant did not have any bandages to back up the one or two I pulled from my wallet.
Different for everyone
Eczema impacts each of us differently. Each of us needs to customize our response to its symptoms. No one remedy suits all. And it impacts our friends, colleagues, and family differently. As an adult, my wife and I were left on our own to learn about the disease and discover doctors who knew about it. We obtained support and information from the National Eczema Association (NEA). We became active with NEA for our own good, and through our participation, have helped others with severe eczema.
My sister, Ellen, also got eczema in her fifties. I don’t remember either of our parents having eczema. I recall my mother having watery eyes, which may have been a weak eyelid muscle problem, which I also have. Perhaps our parents did not know if one of them had eczema, or it hadn’t been “invented” yet. They were born in 1901 and 1904. Several of our children and grand-children have eczema.
My eczema life is pretty normal now. But eczema still pops up from time to time. I had it around my eyes over the Christmas holidays and into January a few years back. I scratched my eyes constantly; they felt like each had grains of sand in them. They watered so much that driving seemed a little chancy. I rubbed them with less-than-clean hands and a staph infection developed. Fortunately it was not MRSA, which I have had. Some medium-strength topical steroids and antibodies eventually cleared it up. This was the first impacting flare-up in several years.
Learning and living with eczema
I finally learned that the “hot chicken pox shower” in Santa Fe was not a cure. But it took a while. We had a hot tub in the 1980s. I would often go in after dinner, before bed, and turn up the heat to 105 or 106 degrees. Dumb! It was replaced with al fresco dining patio. When we traveled to Japan, I did not go in the hot baths even though some had spectacular views. Getting to this point took experience and education.
So, can one grow out of eczema (like some children do) when the onset is as an adult? Here again, it is different for all. For me, now, eczema is a minor and only a very occasional annoyance.