I am two weeks from my first year anniversary. Signs that I was entering a new flare started showing up a few days ago. Up until then my symptoms have been reduced to my appendages, but I started getting a rash back on my abdomen along with itching and wetness. My eyes started swelling and my neck has broken out. I itch everywhere. Every. Where.
When I woke up today (at 3:00 in the afternoon), I could not open my left eye. It was welded shut.
At least now, how I look and how I feel coincide.
I am back to where I was before the last flare and I am making slow progress. I went to see my dermatologist team at UT Southwestern, and they were pleased. Yay!
Temperature control issues, cold sweats, electrical jolts, and itching on my chest and stomach have all but gone away. My extremeties continue to be a problem, with sometimes painful cracking on the bottom of my feet and hands.
My lack of ability to resist scratching continues to defeat me. Sigh. I think most of my skin issues would go away if I could just stop the damned scratching. The itching, especially on calves and feet continues to defy description. Oh, and there's still skin flakes flying everywhere.
I just don’t know if the phototherapy is helping or not, but the doc wants me to continue. I started out at 20 seconds per side and now up to 4 minutes. I will keep ramping up until I burst into flames I guess. It does feel good to do it, and there’s a nice scent like frying bacon afterwards.
Mentally, I am defintely better. Example: For years I have played in a semi-weekly poker tournament with a bunch of great guys from work, and I was able to play again last week for the first time this year. I did not play very well, but I didn’t before TSW anyway. I’ve actually saved a pretty good chunk of money by not playing all this time. Haha.
I handed my dermatologist a stack of printouts of topical steroid withdrawal reference material (from the ITSAN reference material page), and she said she would read them. I believe she will. She is genuinely interested in what I am going through. I do not think that she and the department chair expected me to heal without the use of steroids. I told her she has an opportunity to become a TSW advocate and she basically said “I’ll let you know”. I did not push it. I’ve got a follow-up appointment first week of September and it will be an interesting discussion.
In the meantime, my battle with Baby Pibu has become frustrating. They continue to sell the steroids-for-babies “Rash Relief” cream in a couple gift sets, and they are in ignore mode. They shut off comments on the Baby Pibu Facebook page, as did MetroDerm, the office where Dr. Kim (the founder of Baby Pibu) works, after I made a post there. I have been acting on my own behalf, but have been encouraged by the ITSAN board to lead an advocacy group there. I’d like to, but I’m not sure how good I would be at it. We’ll see how it goes with Baby Pibu.
If you are from Baby Pibu and are reading this, for the love of God please stop pushing drugs on babies. Please. I do not think I have ever been this upset about anything, and I swear I will not give up until Baby Pibu is steroid-free. If you somehow manage to silence me, there are over a thousand ITSAN TSW Warriors and parents of children suffering through TSW that will happily take my place.
