It has been a long time since I posted. Again, it is good news, because there is not much to post. My skin is pretty much the same. A little itchy, a little dry, eczematous around the elbows, forearms, and shoulders.
I wanted to post for one specific reason though. C has always wanted to go to New York City. She is such a California girl and hasn’t been many places away from the West Coast. But she has been wanting to go to NYC during the holiday season for years. My parents go to NYC pretty often and usually go during Christmas. My mom has been saying for years that we will meet up there and give C the chance to experience NYC during this time.
Two years ago, I spent Christmas in my parents house, basically bedridden and unable to move. Last year, I had my last bad flare during Thanksgiving. We talked about booking a trip, but my recovery just seemed to much in question. Could I really handle cold, dry weather? I was already in pain, my skin was still shedding, and going through those stages where every other day it was like I was wearing a layer of skin that was one size too small, and then would crack, pop, and peel.
So this year, we decided to go. No fears about my skin.
And we had the best time!! (pics below).
My skin did get more eczemateous. My skin was much dryer than usual and my arms and lower legs got really itchy. But, my skin never held me back. I think that is the beauty of my life post-TSW. Even when using steroids, my skin held me back. Anyways, one day back in LA and my skin is pretty much the same as before I left. I still wonder if what I have is eczema that I will always have or the last little minions of TSW. I suppose time will tell.
I know this is a really hard time of the year for folks going through TSW. My first Christmas going through it was horrible. I missed every holiday party. I stopped going to work 3 days before I was supposed to go home for Christmas because I was in so much pain I could not put clothes on. On Christmas day, I was on a cocktail of pain medication, and in a blur of a day, went to a family function where people were holding back tears and grasping on to me, telling me they loved me and to be strong. That was a terrible year – not only for me- but the people who loved me who were so afraid of what I was going through. I was a shell of myself, covered in red, oozing sores, and unable to move more than a few steps because of the pain. My family, who was used to me being an outgoing, energetic person, was very alarmed by what they saw. For those of you going through this now, MOST LIKELY, it will be MUCH BETTER next year! Hang in there.
And here are a few pictures from our trip to NY 🙂
Here we are, 6 months off topical steroids. In celebration of this milestone, I have made a video. Also, there is a video I made about three months ago that is from my lowest point. I never posted it, and I’m posting it now to show that things do get better!
I want to give two special shoutouts… To my mom and Chalon, thank you so much for everything. Without you, I don’t know where I would be or how I would have done this.
I am healing. My arms and legs are getting better everyday. Neither have really had a true flare in almost a month. Hopefully, daily sun exposure will help them along.
The itch is decreasing. I can ignore it most of the time. I can distract myself and stop myself most of the time.
I am sweating! This means my skin is starting to regain its normal function! The sweat does irritate my skin, but I’m willing to put up with it.
Im not healed, but that’s ok! I thought by 6 months I would be healed or nearly healed. I think it’s safe to say that I am at least halfway through this. When I saw Dr Rapaport a month ago, he said I was 65% there. What a sweetheart for him to say something so optimistic! Bt I feel like I am more like 50-55% there.
Ugh, my back and underarms still ooze, scab and shed every single day. The itch is still the worst back there. It does seem like its getting better, but moving at a snail’s pace.
Anyways, here are the videos and some pics we took