Warning - this has nothing to do with cooking or baking!
It's taken a little bit for me to work up the courage to post this, but I knew I had to get my story out there. Please take it with a grain of salt, as this is *my* experience, and will not happen to everyone; however, I feel that it's important enough to share. If I can save one person from going through this, it's worth it.
I've been pretty withdrawn, anti-social, and a bit un-Beth-like for the past 6 months, and this is the reason why:
In late January, I stopped using all my topical steroids because they stopped working. Within days, my eczema worsened. The rash spread from a few regular spots (the back of my hands, lips, and arms) to my whole body. It kept spreading. I developed night sweats, insomnia, and lost my appetite. I was also cold...like a bone-deep chill that kept me hunched over, shivering, at all hours. Some days, I dressed in 3 layers, only to sweat through them all, but I was still freezing. Yet despite being cold, my skin burned. I developed Reynauds in my fingers, and they turned purple/white at the slightest chill. I spiked fevers, had horrible headaches, terrible fatigue, and a general sense of "cobwebs" in my head that I just couldn't clear. The worst was the shedding. It was like a fine dust of skin-snow followed me everywhere I went. It was gross and incredibly embarrassing.
Alex and I were really worried and couldn't figure out what was wrong. We thought it was my elimination diet, and that I was just lacking basic nutrients which was leading to my chills and lack of circulation. So I ate more fat, and added loads of oils. I tried organic lotions, creams, supplements, and oils. Nothing helped. In sheer desperation, I turned to Google, and got my first inkling of my problem when I found this:
More research on "Topical Steroid Addiction/Red Skin Syndrome" lead me to ITSAN (Int'l Topical Steroid Awareness Network) and a whole community of people with my exact symptoms. I read through their checklist and cried:
- Red, burning skin
- Unbelievable, extremely intense itching
- Shedding or flaking skin
- Edema: Swollen skin or swollen body parts containing fluid.
- Oozing skin
- Raw, painful skin
- Eczema-like rashes spread from area of skin that was originally affected by eczema
- Difficulty regulating body temperature
- Insomnia or difficulty maintaining a normal sleep schedule.
- Loss of appetite.
- Very, very dry skin that has the look and feel of plastic.
There is one dermatologist out in LA who specializes in this, but he has become so overwhelmed with patients that a mere phone call is $500. So I turned to the community of TSW sufferers and used their collective knowledge to handle the past 6 months. One of the scariest things about TSW is that it can last for months. There is no set time-frame for how long it will take for your body to recover from years of steroid use and addiction. Some of the people I "met" have been dealing with this for years. YEARS! It remains a constant source of frustration for all of us that we haven't been able to find a doctor to help. There are thousands of people dealing with TSW, either personally or as a caregiver/parent, and we all have the exact same symptoms, brought on in the exact same manner. Yet the general Western medical community denies that this is a problem.
The pictures above are from late February/early March, when I was in the worst of it. Now, in July, I'm very much improved. I believe that my saving grace has been due to the fact that I used over the counter cortisone cream (Cortaid 10 and generic equivalents) over most of my body. I saved the hard-core prescription stuff for serious spots; lips, eyes, elbows, neck, backs of my hands, and behind my knees. Now, these are the areas that continue to flare and cycle in TSW, while the rest of my body has continued to heal.
For more information on TSW, I encourage you to visit www.itsan.org.