In just 11 days, I will officially be in my third year of topical steroid withdrawal.
I felt like I should stop by and give a little update. Wait for it… I am doing REALLY WELL!!!!! Now that I have typed those words, I’m probably going to flare horribly.
A few weeks ago, I went on a 12 mile bike ride down the coast. I wore a tank top and a bathing suit. At one point on the ride, we stopped, locked up our bikes, and jumped in the ocean. I got out of the ocean, patted dry, and laid in on the beach. I got sandy, sweaty, salty, wet, dry, etc. And guess what? It had no effect on my skin. I did the same thing this past weekend and even got a sun burn. And my skin is just fine. Two months ago, this would not have been possible. The 1 1/2 years of withdrawal, my life revolved around the bath. Once I was out of the terrible part of withdrawal and I was able to leave the house, we would plan to do only one or two things. For example, I could go out to dinner, but I couldn’t go to dinner AND a movie because I couldn’t be away from the bath for that long. We could go to the grocery store and the pet store, but we couldn’t do anything else.
My skin is doing pretty well. I stopped moisturizing my torso about a month ago. I was moisturizing my arms, legs, neck and face daily, but I am in the middle of a no moisturizing experiment. I am only four days in, so I’m not sure I have any results to report yet.
I recently posted this picture to one of the support groups. About 4 months v. 23 months.
And a few other pictures from some fun times!
Stay tuned for a two year update!
Not much to report here. It is so interesting how in the first year, everyday was so exciting and I was constantly looking for changes in my skin. Now I rarely take any pictures of my skin because it isn’t really that bad and things rarely change too much.
that being said, I have improved over the last month. My arms are definitely healing up. I’m starting to do yoga more often. I took a hiatus after my skin flared up in May. I took a class in June and my skin flared up pretty badly afterwards so I completely stopped to give my skin an opportunity to heal up.
A big improvement is that I have been tolerating the heat pretty well. In the past year, any rise in temperature has made me panic. Sweat still burns a bit in some places, but I think that it is getting better. The itch is definitely still here, but no where near as bad as it was this time last year. It definitely is the itching that comes along with having super dry skin.
Here are some pics of me out and enjoying life. You can see my skin isn’t perfect, but it’s not getting in the way of life.
In inching closer to the two year mark and wondering what healed will look like for me? Will I ever stop flaring? Will my skin be like it was before I started using steroids heavily? Who knows.
Hope you are all hanging in there!
Update… I added a few more pictures I stole from C’s phone… Some are a bit silly, but I wanted to show what my skin looks like on an average day.
Sorry I haven’t been around in a little while. I have been flaring on and off since my last post. It hasn’t been as bad as the last post. We had our second wedding at the end of May and then went to mexico! My skin didn’t do too well in mexico… I was swimming in the ocean, hanging out on the beach, and getting sun. It was really hot and humid. Since we got back, my arms have been really struggling. My left arm in particular has been having a tough time.. It has been constantly cracking, oozing, and peeling, over and over. This week it oozed nonstop got about week and I had to wrap it in gauze to soak up the ooze. Haven’t had the joy of all of that in a while!
My chest, neck and shoulders have been chronically irritated and flared up too. But the good news is that since the last flare up in mid May, my back, stomach and legs have been just fine!
I promise to post more pictures soon, but here are some wedding/mexico trip pics…
And some pictures of my weird ongoing left arm issues…
Hope you are all doing well!
We are planning our belated wedding celebration in 2 weeks. I felt confident enough in my skin to buy a black silk deep v neck alice and Olivia gown for the big day.
Well, it has been about 2 1/2 months since my last flare… Apparently my skin thought that wasn’t fair and bam – it hit me like a sack of potatoes l. I’m upset and I’m trying my hardest to deal with it like every other flare. But it sucks. I’m in pain and I’m itchier than I’ve been in a long time.
The good news is that when I took these pictures, I realized that my skin isn’t too bad in the grand scheme of things.
My last batch of pictures was taken after a neck flare up – actually what seemed to be worse than it has been in some time. No ooze or nerve pain, but it got pretty itchy and thick red skin. I though it was related to sweating, but I think that it was already flaring up because last night
I did another strenuous yoga class last night and had the same amount of sweat and my skin didn’t flare up.
Here is my neck today, which is a better reflection of what my neck/chest looks like on a normal day. It continues to be the worst spot on me in these later stages, but that is to be expected because I used a lot of clobetasol on it in my last 8 months of steroid usage.