What a month.
I feel so exhausted. I am desperately trying to raise money and find ideas for fundraisers with my Red Skin Syndrome Documentary (Preventable: Protecting Our Largest Organ), while also trying to stay motivated through personal struggles. Add Topical Steroid Withdrawal issues, and you’ve got the perfect tri-fecta.
I post a lot of pictures through my instagram, which don’t really show how much TSW has been affecting me this month (since that’s not really what my personal account is about). But, for the past two days, I have started a dose of antibiotics. I really didn’t want to go on them but my skin was getting worse and so itchy. I went in and got swabbed and it showed a heavy growth of staph. Now, almost every single person has staph on their body. That doesn’t mean we all need antibiotics everyday for the rest of our lives. But, for most people going through TSW, it can be a cause for concern because we have such open skin. I needed a break and am hoping this can help some of the bad areas.
I also have had a horrendous cold since Valentine’s Day (update: today, it’s only down to a crappy cough, thankfully). Being in bed all day was NOT how I wanted to spend my first Valentine’s Day single in… 5 years? I had this whole plan that I would take myself on a date to the movies (John Wick — I ended up seeing it at a later date — OMGGGGGG go see it!!) and distract myself from the day that Hallmark has created to remind me that I am now alone. Instead, I just cuddled my Spiderman all day and watched a few movies at home while trying to not dwell on current affairs.
Near the beginning of February, I got to go see a friend get married in Jacksonville, FL. I didn’t have a dress, so I went out and bought one that would cover my arms. As fun and incredible as the wedding was, by the end of the night, I was ready to go home since my skin on my face was bothering me. In pictures from the wedding, you couldn’t really tell.
But when I got home and got into my PJS…
My cheeks, upper lip and neck were red, hot, and itchy. This became a trend all through February.
When I went to the vet to take my pet rat in for her medication, my skin went all sorts of crazy. It felt like someone had placed a heater on my face.
This is why I finally went into the doctor myself to see if I could get medication.
Here are a few more photos of other areas still affected by TSW:
I’ve got these weird patch bumps on my stomach, my wrists and arms are still very dry as well. There is still redness to them as well, but they are much better than a year ago! I’m also still shedding.
Through all of this, I have still been trying my hardest to bring you all some informative YouTube videos with incredible doctors. The conversations range from the importance of Vitamin D, how our gut health is linked to many other functions of our body, and even the miraculous research done in Traditional Chinese Medicine. I have two more coming out, one every Sunday.
Also, if you know anyone interested in contributing to my documentary endeavor that will serve as a voice for us all, please have them check out my website, Preventable, as well as the sponsorship website: Creative Visions Donation
We need 45k to be able to start production June 1st. Any amount helps. Help me in spreading the word. This is more than just Red Skin Syndrome. This is about PREVENTING it — so those thousands of people around the world who use topical steroids (and steroids in general) can have the correct information they need.
Love, B. R. Wren