November 7, 2006 ~ Permanent Damage
I didn't realize how much my hands speak for me until they started repulsing strangers. I am not vain, and I have pretty good self-esteem, but after several months of revulsion being many strangers' initial reaction to me, it really started to get to me.
Imagine how it feels. You hand money to a cashier or point to something or take someone's hand... and they recoil or get a look of disgust on their faces and stare and stare while pretending not to look. Handshakes become something to avoid. You wear long sleeves that mercifully hide at least part of your hands. Sometimes you forget, and you reach out, and that look of horror is like a slap in the face. And today there's not even any blood or scabs.
You know what they are thinking. "Oh yuck! That looks contagious." And you want them to ask, just so that you can tell them it's not something they can catch. But they never ask. You want to tell them anyway, but that would be calling attention to their rude expression, and you don't want to embarrass them, so you let it drop. You let your hands drop, too, out of sight.
It started not more than two weeks after Grove was born. It could have come up right after his birth, but I was so distracted with my new son, I may not have noticed right away.
Raised, angry red, itchy rash patches on my hands and fingers that, over time, built up like calluses. It goes through cycles. First, inflamed itchy red. Then it gets silvery, dries out, flakes, cracks painfully, and bleeds a little. It starts to look like it will heal, for a week, but then the red itchy stage comes back and it goes through the cycle again. Over the months, it has slowly spread from a few small patches to an angry rash all over my hands and fingers.
At first I assumed it was an allergy to one of the new baby things like the baby shampoo, so I stopped using everything except the shampoo and soap that I had used all through the pregnancy and for years before. But the rash got worse.
I asked my midwife about it. She told me to see my family doctor. The first time I saw him about it, about two months after the birth, he said that it looked like either ringworm or eczema, and told me to try an over-the-counter hydrocortisone cream. If that did not work, try an anti-fungal. Neither worked; the rash got worse.
I went back to the doctor about three months later, he said that it no longer looked like ringworm, but that perhaps that it was a bad case of eczema that hydrocortisone wouldn't help. He prescribed a steroid cream. I went through two treatments of that; it helped, but the rash quickly came back worse than before. I called my doctor; he admitted that he could help me no further. I was referred to a dermatologist. I had to wait several months for the appointment. The rash got worse.
I remember one evening, sinking into the couch and holding back tears. The rash was particularly bad that day, and I had been out running errands. I said to Morgan, "I'll be holding Grove, and what always hurts the most is when someone will look at him and a beautiful smile will break across her face, but then her eyes will glance down at my hands and the smile will drop away and an involuntary frown or even a grimace will briefly take its place. It's only for a moment. She'll catch herself staring, fix her expression back into a smile. But that uneasiness is there. I know she'd recoil if I reached out toward her. The contrast of that moment breaks my heart, when the smile for Grove turns into the grimace in reaction to my hands, in reaction to me."
And it hurts to touch things or be touched. Hot water against it is agony. Sometimes just making a fist makes them crack and bleed. The itching some days drives me mad.
Finally, two weeks ago, the long-awaited dermatologist appointment came. I sat nervously in the examination room, clutching my itchy hands in my lap.
He barely looked at my hands, or the pictures I'd brought from a few weeks before when it was particularly bad. "Eczema or dermatitis," he said. "Common in new mothers, since you've been washing your hands so much more."
"I haven't really been washing my hands that much more, though--" I started.
"Changing diapers, trying to stay sanitary for the baby, you're washing your hands a lot more. It's very normal. Here's a prescription for a steroid ointment. It should clear it up."
"This is the same thing I already got from my doctor. I've been treated with it twice, the rash just comes right back--"
"Yes, notoriously hard to treat, this sort of dermatitis. Try it again, this time with some cotton gloves on over to help it soak in."
"Well, okay, but is there not anything else to try? This didn't work before..."
"Also start using lotion constantly. After every hand washing and in between. We can also do an allergen test to see if there's anything aggravating it."
"That would be good."
"And if this keeps up, maybe we'll transfer you to the regional specialist in Winston Salem."
I'm beginning to believe that "eczema" and "dermatitis" are code for any skin condition that falls into the category of "we're not really sure what is causing your rash, but it's definitely a non-contagious rash of some sort."
After the appointment, I thought about what he had said, and I just couldn't accept it. Because of this rash, Morgan had taken over almost all diaper changes when he was home, and most of the wet chores, like dishwashing and bathroom cleaning. Since we use cloth diapers, Grove only needs to be changed every three hours or so (they are more absorbent). While I was home with Grove during the day, I was changing his diaper at most four times. And knowing that getting my hands wet aggravated it, I consolidated hand washings by going to the bathroom at the same time as diaper changes, and then prepping food after one of these hand washings. I am not germ-phobic like a lot of new parents are. I knew that some germs are a good thing. So I was washing my hands maybe three or four more times a day than before. Plus giving him a bath. I was very skeptical that three hand washings a day and a short bath had suddenly turned me into a modern-day leper.
The allergy test showed that I was allergic to nickel (which I already suspected) and thimerosal, an antiseptic and preservative mercury derivative found in some cosmetics and medical supplies. It is not in anything that I use.
When I discussed these results with the (different) dermatologist who conducted the test, I also mentioned my doubt about the hand-washing theory. She explained that sometimes when someone like me, who has had mildly sensitive skin most of my life, goes to a hospital for the first time (as I did when Grove was born), sometimes they are exposed for the first time to something they are severely allergic to, like thimerosal or any number of chemicals found in medical supplies and the more harsh cleaning supplies used in hospitals to keep them sterile. A more extreme allergic reaction like this can permanently damage the skin and make it extremely sensitive to everything from that point on. She said that she would guess that this might be what happened to me.
I kept going to the doctor and the specialists, not accepting that this was a permanent condition. With every new treatment attempt, I really believed that I'd finally heal. I'm finally starting to accept that maybe this is permanent. When I walked into the hospital the day that Grove was born, I knew that my body was never going to be the same after birthing a child. But I never thought to look at my hands and admire their health for the last time.
I've just finished a course of steroid treatment, and the skin where the rash was is now shiny with scars and new skin. Already, though, the red is coming back, and I fear that by next week strangers will be cringing at a glimpse of my hands.
According to the doctors, I'd best get used to it. This is as good as my hands are going to get.