I am mid way through Month 2 of my Topical Steroid Withdrawal.
It has been a roller coaster of things: flakes, hot red skin, ooze, lethargy, baths baths baths, itching, death of my social interaction, biopsies, ultrasound, and lots of vacuuming
Medically: I am fluctuating on the low blood pressure scale. It’s been better these past few days. Back up to 103/70 yesterday. My heart rate however seems to be elevating. Any little thing, whether its dish washing or walking to the front office and back, my pulse is through the roof. High 90’s and even past 100.
Many of my lymph nodes are swollen, including ones in my breast. I had an ultrasound done to make sure everything was ok, and the doctor said he sees nothing to worry about. If any of you TSW women (or men) feel lumps, it may just be from your lymph nodes going crazy through this process, but ALWAYS check.
Flaking: I don’t feel I have reached the full shedding phase yet, but I am certainly getting a taste.
First pic: That’s how much I shed at night. I usually scoop it off in the morning after my hour long bath + 30 minute lathering session with Vaseline and/or Jojoba Oil.
2-5 Pics: Typical shedding. My neck and arms are always rotating between oozing and shedding. My hands have been cracking lately and very flaky. My hair line is the worst! About 2 inches into my hairline is dead skin. All the time. It’s gross, I hate it, and it scares me because my hair seems to be very fragile and easily pulled out. I pray I don’t lose my hair over this.
Ooze: Not only is it like sticky sweat, but it smells like a moldy sock and it dries yellow. I wrap myself up all the time when I ooze. The stench kills me, especially at night. This is what my clean pillow looks like after 2 nights of use.
Dried ooze. I’d have to say it’s the most foul thing I have ever dealt with in my life.
My legs are also suffering from this plague. They have blossomed in the past 2 weeks.
You can see my biopsy spot in one of the pictures. I have one spot on my arm as well (–that was NOT stitched back properly. One stitch… just one, and they couldn’t get it right…)
My arms are about the same. My hands are getting worse in the sense that the red skin is creeping up to my fingers. Truly hope it doesn’t cover my entire hand, but I am preparing myself for that…
And of course, the FA-TCHE’. My lovely face.
My forehead seems to be looking better. However, my face loves to ooze. I even had the lovely privilege of having ooze DROP OUT OF MY EAR onto my computer as I was typing. Literally, dripping with it.
I hope this blog helps other TSW warriors with their journey. We are all different. Some experience certain symptoms more than others. Just take deep breaths and push through! We all know there is a happy ending. We just don’t know when that ending will be. So keep going!
Love, B. R. Wren