What My Rash Has Taught Me

I have certainly learned a few things through the process of dealing with my latest, nagging side-effect. This persistent rash, covering me quite literally from head to toe, could have been a deal breaker for this treatment. It burns, it oozes, it itches like crazy, and it just plain hurts much of the time. But that has not prevented it from also being a teaching tool.

My rash has taught me...

There is no such thing as soft clothing

Sad as it is, I now understand that all the claims about how soft one material or another is are nothing but lies. That's right, flat out lies. Nothing that rubs against my body is anything but scratchy. Not cotton, not that fancy new microfiber, not even silk; if it comes into contact with my skin, regardless of thread count, all of it feels like sandpaper. And no, fabric softener does not help. That said, some sandpaper is less rough than others.

Dandruff is not just something you shampoo away

Not only is dandruff shampoo a painful and pointless choice in this situation, but it would only be addressing the tiniest aspect of all this "shedding." While those little "flakes" dot my shoulders just like in the shampoo ads, they also cover my desk and my chair, and when I change at night they poof out of my clothes like a little cloud of sloughed-off skin. It may seem somewhat gross, but I am leaving a wake of dried and discarded epidermal cells everywhere I go.

I have very little impulse control

No matter how many times I am asked to stop poking at my scalp at the dinner table, no matter how short I cut my nails, I cannot seem to stop scratching away. It is not that I forget about it, nor is it that I secretly want to continue scratching -- I really cannot help myself. I used to think that I had a lot of self-control; I have consistently shown up to have needles shoved into my arm every few weeks for nearly four years and never balked. But I cannot keep my hands still for more than a few seconds, and if they find a particularly rough and scabby patch of skin, forget about it.

There is no such thing as an "all-purpose" moisturizer

I go through over a pound of moisturizing cream each week, but as effective as it is, it does not do the job on its own. I use a 24-hour cream recommended by my dermatologist, but I apply it at least once every four hours -- and end up spending well over an hour each day applying the goo to my skin. But I also use ointments and gels and lotions and serums that all absorb differently and some, thank goodness, have antibiotic, pain-numbing, or itch-relief medication in their formulations. (There are also a few with steroids, but those cannot be used for long periods of time.) "It takes a village," all right. A friendly village of moisturizing agents works undercover for me all day long.

I can be comfortable in my own skin

The rash itself does not define me, and so presenting myself to the outside world does not have to be defined by my appearance. No matter how many changes my body goes through as a result of treatment, I am still the same person, and I have no real choice but to accept that these outer changes will continue to change. Even when my skin is just about the least comfortable thing about me, I can be totally okay with the way I am. It may be that I need to avoid direct sunlight, but I am still going out in the world. Covered up or not, you get what you see -- and hopefully what you see goes deeper than the blotchy redness of my skin.

Editor’s Note: We are extremely saddened to say that on October 21, 2018, Jeffrey Poehlmann passed away. Jeffrey’s advocacy efforts and writing continue to reach many. He will be deeply missed.