First a quick update. 64 days and counting. My rashes came back a little bit from this weekend when I was doing much better, and the oozing is back again, but not so bad. One symptom that I’m really glad to be rid of (and I hope it’s gone for good!) is when the skin around my eyes gets so dry and tight that it’s uncomfortable to blink or open my eyes wide. So far I’ve had a good 5-7 days or more without that happening! I wonder when the second flare will come or if it will come at all, maybe I”ll just stagnate and gradually get better.
I’ve noticed recently some hair loss/thinning. Some TSWers note that their hair thins out or they lose their eyebrows. Thankfully my eyebrows haven’t gone anywhere, but I do notice that any body hair is growing back slower (like when I shave my legs) and that the hair on my head is really getting fine and limp. I had relatively fine, straight hair to begin with, so now it just looks stringy and disgusting to me. Plus it’s a terribly grown-out version of one of those punky haircuts that’s longer in the front and spiky in the back, now it’s just sort of a shapeless short bob.I’ve been saying I’ll go back to short hair when I am seeing vast improvements in TSW because then I won’t feel I have to hide, but having really short hair is so much easier and there isn’t that much more that I can hide with my shapeless mop at the moment, as it doesn’t cover my neck and only goes down to my chin at the longest part. So maybe I’ll go back to having something like the below pictures, a la Halle Berry or Victoria Beckham. The only problem with having hair that short, as a female with average, non-movie star looks like me, is that you really have to wear a bit of makeup and somewhat feminine clothing to help people understand you’re not a little boy (at least for me). Basically I just don’t want to look like the same tired sickly version of myself with a bad haircut… LOL. But, you get to the point where you don’t care what people think anymore, and I’m at that point. Comfort and convenience is going to trump vanity here. I WILL be getting a short haircut, it’s just a matter of when I can find the time.
And now – If you are the spouse/partner/boyfriend/girlfriend of someone going through Topical Steroid Withdrawal, I’ve amassed a list of helpful, caring, loving things you can say to make that person’s burden a little easier!
“I don’t mind you itching all the time, but why don’t we hold hands or hug so then your hands will be distracted?!?”
“Don’t worry about all those flakes in the bed, we can vacuum those. I don’t think they’re disgusting at all!”
“Let me help you put together your most comfortable outfits, so that you can feel good and not itchy.”
“I don’t think you need any more stress in your life, so I’m going to help with most of the housework.”
“You know, red is the new black this year. I hear it’s highly fashionable. You just happen to be fashionable head to toe!”
“You really need to keep your strength up with healing from this TSW. Why don’t I buy you dinner from [insert favorite place here].”
“No, of course I don’t mind that you just want to stay in the house all day like a hermit! Let me keep you company and we can watch a movie together.”
“Let’s go for a walk/run/bikeride together. Being in the fresh air and exercising will help you forget about your skin for a bit and de-stress!”
“Your skin is looking better today! I promise you that probably no one is noticing it!”
“I admire you for persevering through this – you are a warrior!”
“I never mind you complaining about your skin. It must be terrible and even though I can’t understand it first-hand, I’m always here if you want to vent.”
“I know YOU may not feel beautiful, but I know you are. It will just be a matter of time before you’re just as beautiful on the outside again as you are on the inside!”
“Of course I still find you attractive! TSW doesn’t mean you’re not sexy anymore. And if you prefer, we can make love with the lights off.”
Did I miss anything on this list? What else would you like to hear from those that are supporting you in your TSW journey?