…you just keep going.
It’s a bit of the unofficial motto of TSW, or Topical Steroid Withdrawal.
In the ITSAN facebook group I belong to, I frequently see people post things like, “I can’t do this anymore.” or posts from people who have just started the process of withdrawal and they are terrified of how bad things are going to get.
It’s like waking up and discovering that you’re up to your neck in quicksand. You either give up or begin the long and painful process of clawing your way out.
Yesterday I was thinking about the visits we had to Gabe’s dermatologist. At first he had responded very quickly to the super potent creams. But on follow up visits his eczema had returned and was spreading. I remember the almost shrill tone of her voice as she told us we needed to use more cream. We needed to apply it twice a day. We needed to seal it in with wet wraps. We needed to follow her instructions exactly and we weren’t and that’s why he wasn’t getting any better.
Of course now I know that those cursed creams were killing him. His skin was the tip of the iceberg. I am so glad we never used as much cream as she wanted us too. I’m so glad we used the protopic (an immuno-suppressant cream) only a few times.
His health was getting worse and worse. The steroids weren’t working anymore. He had a weird red rash on his torso that wouldn’t go away.
My husband discovered TSW reading an eczema blog. Everything definitely clicked. We had answers but now we had to weather the hellish withdrawl. We had to claw our way out of this quicksand that we had stumbled into.
Eight months later and the redness has faded. But right now he deals with nerve pain where the nerves are healing and regenerating.
His legs aren’t a mottled purple anymore but he still oozes plasma out of too thin skin. He still wakes up in a pile of his own dead skin every morning.
He is still very dependent on us for much of his care.
I don’t know why I am writing this other than I just need to get his story out there. The medical establishment almost killed him.
I implore people, please do you own research. Don’t blindly trust someone because they have a stethoscope around their neck. Investigate the ingredients of anything you allow to be put on or in your body.
It’s been a long fight, an all out bloody crawl, back to health. But this is my beautiful boy today… healing naturally with the help of supplement and lots of TLC.
He still has a long way to go but we’re thankful for the progress we’ve made and all we’ve learned along the way.