Welcome

I wish I could say that I'm happy you're here. The reality is though, that you're here because you or someone you love has been impacted by Steven Johnson's Syndrome. 

But, I do hope that my experience with my journey will be helpful in the coming days and weeks. One of the most frustrating things I found after my diagnosis, was the lack of information available. Everything I could find was generic information or written at such a high level of medicine that a general person can't understand it. The next thing I noticed was any information available seems to be geared toward TENS, which thanks to early diagnosis and immediate discontinuation of the causative medication, I did not develop. As my recovery started, I then noticed that there is even less information on life after Steven Johnson's Syndrome. 

That's what called me to create this blog. I'm not sure if it'll ever be a help to anyone, but I'm also hopeful it will bring me some comfort. 

While I didn't end up with TENS and I suffered far less damage than most, it still rocked my world. I still can't wrap my mind around how it happened. One day I was at work with a roaring headache and grabbed a bottle of OTC painkillers. I never imagined something so small and so common could cause me to lose a whole month of my life and leave me with so many questions for the future. I've said the words "I'm one of the lucky ones" thousands of times over the past few weeks. I'm lucky I was diagnosed early. I'm lucky it was caught before it progressed to TENS. I'm lucky I didn't end up in the ICU. I didn't have any impact to my eyes. I'm lucky to have found a doctor who diagnosed it when I had just a few blisters. But honestly? I don't feel lucky right now. 

Maybe that will change as I write this and navigate this journey. Right now, I'm sitting here recovering from pneumonia secondary to SJS, trying to navigate how to heal my skin and wondering what the long-term damage is.  Right now, it hurts to swallow and I'm not sure when and if that will go away. The blisters that were down my throat and in my mouth are healing, but I still feel the pain every time I swallow. I've had issues with my lungs since I got sick. I was a formerly well-controlled asthmatic, who rarely required anything outside of an occasional rescue inhaler unless I had a chest cold. Today, I'm on round-the-clock nebulizer treatments, high dose steroids, steroid inhalers, and can barely make it to my bathroom without wheezing. 

The last few weeks have been hard. I've encountered so many medical professionals who don't know anything about SJS outside of a textbook and were told they would never see it. They don't know how to treat me, and they don't have a clue what the long term will look like. 

So welcome to my journey of life after SJS.