Blog · June 8, 2015

EB Still Surprises Me.

One would think that after 18+ years, nothing about EB would surprise me anymore. Well, it does. EB still manages to shock us at what it can do and how it manifests itself.

Last night as I was taking off a bandage from Nicky’s upper left arm, it looked as if an infection (pus) was setting in a wound-but not in the usual way. Normally the pus (I know, yuk, but EB can be just majorly yucky) fills up a blister, or it colonizes a wound, but this time it was different. It looked like it managed to infiltrate itself way under the skin somewhere, so the pus had to be “squeezed out” of this little hole. WTF? Nicky wasn’t even phased. It hurt, yes, but he reminded me how it’s the same way on his left foot.

What’s happening there is also quite bizarre. It’s hard to see in this photo, but basically the pinky toe has webbed in with the rest of the toes, but there is still this little separation from the separation of the pinky toe and the toe next to it, and many times an infection builds up inside that little hole which I have to squeeze out and fill it with topical antibiotics. Of course squeezing anything on Nicky’s skin is a tricky, tricky thing. I have to be gentle, yet firm… and it’s quite painful for Nicky.

In this picture is healed-the “white residue” is what remains of my white “concoction” that I use to heal Nicky’s wounds, which is a combination of diaper rash cream with 40% oxide and many other products (I talk about it in my video here: It’s been OK for some time now, but every now and again, it fills back up.



Now, Nicky has RDEB-HS, and other “weird” EB stuff that have surprised us at time include nails growing out of a knuckle (no lie), miscellaneous bizarre webbing, such as the one of his belly button or inside his esophagus, and a weird wound of which part of it could be lifted off on the side. Sometimes I feel there is no rhyme or reason for things, Nicky and I study the bizarre thing in question, deal with it, sometime even laugh and take care of it the best way we know how. OK EB, you’re just weird! You got us that time, LOL.

At best I try to keep a sense of humor about it all. Laughter is the best medicine. I feel that as long as Nicky is pain free and stable we’re OK. Living one day at a time, as always…

Love & Light,