Still Flaring-Healing is Long Time thing

May 21, 2013

Still Flaring-Healing is Long Time thing

a very dry neck

Hey all,
I hope you are making it through your TSW experience.

I am about 4 months in. The beginning seemed much more promising. In the sence that my skin flared and then calmed down. Now for the last 2 weeks it's just been one long flare. I have never had a flare this long since the start. It also seems as if some paces are getting much worse. Like my face,neck & arms cracky weepy central!

I am wondering if the heat is contributing to the hives and added rash? Yesterday morning I took a 2 hour apple cider bath. So much dead skin came off, it was incredible. But my skin is pretty dry again today. Moisturizer burn way too much during a flare, so I am going without.

It's not quite the most appealing look but I am learning to "own" my TSW skin/appearance. Often I am trying to hide the break outs, but the hotter it gets, it's just physically impossible to do that. I am thankful to have a great hubby and good friends/church that still love me despite my scaly, flakey, burnt appearance.

the forever oozing arm :(

I really do think it's important to have people around you that fully know and understand what you are going through. I even share how it makes me feel to those around me, not to draw a pity party, but to cause awareness. They just may know someone with eczema and a red flag will go off and they may warn someone else not to use steroids.

Also letting others know whats going on and see it, as apposed to hiding, kind of frees you. It free's you to hang out with your friends without them looking at your neck for a half hour wondering what the heck that is? Because they already know and understand. It also free's other to love you just for you. When we try to hide and internalize the experience we are in for a long, lonely ride. And without this, the ride is already long and lonely, don't add to it.

Speaking of long, when I first learned about TSW, I was under the impression it could take 1 year to get healed. Maybe 18 months for a severe case. I even came across people healed in 5-7 months. So although that still seemed like a fairly long time, I could handle it. The more and more I become familiar with the people in the ITSAN forum and blogs I have seen that this healing isn't just wrapped up in 18 months. Although it can be and that's my hope. But 2-5 years can and has been a reality to some folks.

elephant skin wrist...hehe-this is starting to be funny

This definitely was discouraging. I even considered just going back to steroids. But then I thought about a few things:

1) To give up now would mean I suffered these 4 months for nothing
2) Steroids are a temporary fix to a long term problem, I will encounter TSW again later in life, and will have much more steroids to get out of my system...not going to be pretty during withdrawal
3) TSW is the only path to complete healing, yet steroids will never offer me any kind of healing.

I hope these 3 points will encourage you in your dark hours. I am going through a rough time now, but it's only temporary. It may be a long term temporary, but eczema with usage of steroids is permanent! No thanks, I'll take the Freddy Krueger show for awhile!