Hi, I’m Rachel, and I have ichthyosis.
I’m lucky in that many of the people I meet on a daily basis don’t know it. There are other forms of ichthyosis which are a lot more severe than the type I have, and some of those symptoms make it very obvious to passers-by that there is something different going on. On the other hand, “my” form of ichthyosis is much more severe than the most common type, ichthyosis vulgaris.
I’ve had 37 years of experience figuring out how to take care of my skin, and if I stopped doing some of that maintenance, it would be pretty obvious pretty quickly that my skin is different.
Most people notice that my skin is different when they shake my hand. Handshaking is a bit uncomfortable for me because not only does it “out” me as having something different, in can also be really uncomfortable if someone has a boneshaking grip. My hands and feet are the most affected — most days you’d be able to notice that the palms of my hands are thick and rough, and, if I haven’t soaked or creamed them well enough (like at the end of the day), you’d probably notice a few fissures or cracks in my fingers. (And yeah, those hurt a bit, too.)
Besides that, if you look closely at my skin, you’d notice that it’s dry — very dry. In fact, some areas like my neck and ankles and the back of my knees look a bit scaly. Some people might notice a few white spots on my arms or legs — and those spots are VERY interesting to some researchers. Others might just notice that I’m a bit on the reddish side, even though I haven’t really been out in the sun recently. Others might notice me having trouble walking or opening things — or, more likely, using some adaptive equipment like jar openers. (We’ll write more about that later.) But really, I think all of those things are pretty subtle.
Here’s how my ichthyosis dictates a typical day for me.
Morning. I crawl out of bed after hitting the snooze button a couple of times and drag myself into the shower. I’ll spend the next 30-40 minutes in the shower, soaking up, exfoliating (scrubbing) and otherwise getting clean. Skipping a shower or even taking a short shower is simply not an option if I want to be presentable. I get out and I slather on lotion. (More about that later, too.) I clean out my ears with a long plastic thingamabob (scaly skin + earwax buildup = yuck). (And my doing so is going against pretty much all official medical advice from ENT specialists.)
As I get dressed, there’s a bunch of more subtle details. The material of almost all of my clothes has been carefully selected to avoid catching on rough skin (hands, elbows, knees). I have orthotic inserts in some of my shoes, and I’ve also chosen some shoe styles to avoid putting pressure on certain (cracked) areas of my feet.
There’s a bottle of cream in my purse, a bottle in my car, a bottle in my desk at work. I’ll apply layers of cream two or three times during the day (and, despite this, could still have strangers remark on how dry my hands look or feel). I’ll open the plastic salad container with a pair of pliers, and the bottle of green tea with a jar opener designed for senior citizens with arthritis (yay adaptive equipment).
You might notice me drinking a lot of water throughout the day, or eating an awful lot at lunch. People with ichthyosis lose a lot more water through their skin, and need more calories. (More on that later, too.)
In winter, when things are at their most miserable for me skin-wise, I might wrap my feet in saran wrap. (It traps the moisture, which after an hour or so helps keep the cracks and fissures from hurting.)
Riding the Metro home, I see someone staring at my hands as we grab onto the silver pole in the train car. Is she checking out my nail polish or looking at something else? I can’t tell, and I don’t ask.
Home for dinner, cooking a meal is a flurry of using adaptive equipment and techniques to avoid getting raw meat in contact with open cracks on my hands. Or, when I’m in a lazy mood, just nuking something frozen.
And before I go to bed, some extra gunk to go in my eyes to control the itching overnight.
Having just written that out, it really doesn’t sound like much. Maybe I’m underselling the effect or some of the planning that goes through many aspects of my day. On the other hand, it’s taken me many, many years to figure out what’s worked for me and my skin. And perhaps that’s a roundabout way of getting to one of the reasons Jennifer and I started this blog — to explain that while ichthyosis does indeed affect many of my major life activities, and that while the daily routine can get crazy at times, it’s not the be-all and end-all of my life. I’m a lawyer; other people with ichthyosis have run triathlons or present on broadcast television. And by sharing our own story here, maybe we can help clear up some of the misinformation that’s out there and help other families dealing with ichthyosis figure out what works best.
Jennifer’s next entry about the kids’ routine may shed some light on some of the differences between my “I’m an adult and I know what I’m doing” routine and what we go through with the kids.