So I’ve been going on the http://www.itsan.org forums a lot lately, and it’s been helping to talk to others that are going through this topical steroid withdrawal process as well. Everyone is all trying to just relieve themselves of this horrendous disease called eczema, and reading about others struggles and journeys helps to put it all in perspective, lets me know that I’m not alone in this, and helps to make me feel like there is a community of supporters all rooting for one another. I was feeling reaaaalllly crappy this past week from going through yet another bad flare this summer and was feeling like venting. The response I recieved from the other members was so encouraging and filled with love that I instantly felt better, and it gave me the boost to keep on keepin’ on. I encourage anyone struggling with withdrawing from topical steroids, to check out the site, and join the forum. There’s a lot of great info that’s being shared on there, and the community of other TSWers makes you feel like you’re not the only one in the world struggling right now 🙂
Here’s the post from Aug, 19th…
I’m kinda feeling like venting and I wasn’t sure what board to put this on, but here goes… I’m generally a positive person, and I always try to push through any situation and know that things will get better. Unfortunately I’ve been feeling pissed off and really upset that I’m still going through this bs. I’ve used TS for 26 years, and I’m 2 1/2 years in. I also had to deal with cancer… Hodgkin’s Lymphoma back in 2008 which I believe was because of the overuse of TS. I got through that like a champ and I told myself I can get through this like a warrior. In all honesty, I feel that getting through cancer was a walk in the park compared to this. With cancer I had an end date to the hellish rounds of chemo (6 months twice a month). I was ironically told that this “is the cancer to have” because it is quick to heal from and usually doesn’t come back. With TSW you don’t have an end date to the horror. You just wait it out, you just calm yourself down and take it day by day. I’m tired of it. I’m emotionally tired, I’m physically tired, I’m mentally tired. Sometimes I wish that I could just sleep for days, wake up and all of this would be gone. I’d have the most amazing skin of my life, be in the best health of my life and pain free. As many of you know this is such a trying ordeal, and we have to stay super strong and hold on to faith that it will be over soon. I’m ready now! I’m ready to get back to my life, I’m ready to actually leave the house and enjoy myself, experience new things and meet new people.
I’ve been fortunate to have my TSW flare up really bad during the spring/summer months and be better (where I’m functional) during the fall/winter months (I say fortunate because it wasn’t just years of agony, at least there was a break). When I first started back in March of 2012, it was a looooong drawn out agonizing process that went on for about six months. It has tapered off since then and hasn’t been as terrible at times. When it is terrible though I start to go back to how hopeless I felt back at the beginning. I’m a pretty spiritual person and I’m constantly looking for inspiring words and whatnot to keep me motivated and pushing though. I think I’m just going through a moment of weakness right now, which I’m sure all of you have at some point. I still give thanks for how far I have come, and that it isn’t spread all over my face right now and most of my body. The only areas left that are in need of intense repair are from my knees down. This makes it hard to walk, put on shoes and socks, and stay on my feet for any length of time.
I know I’ve come far, and I have just a lil more to go… I just gotta hold on, but there are some days when you just wanna crawl into bed and not speak to anyone and cry your eyes out… and I’ve been having one of those type days for the past couple of days. I hope this doesn’t bring everyone down… I just wanted to put it out there and be real with it. I know “this too shall pass” and I’m looking forward to the day when it does.
Please feel free to vent along with me…
**Just from the knees down left to really restore!!! Gotta just keep pushin’ through!**