When you have Stevens-Johnson Syndrome (SJS) your skin gets all irritated, bumps that turn to blisters, then scab and look gross. It also means burning hot skin that peels off like you have a sunburn or are like a snake. I feel like I am snake. my calfs burn and face peels. When I go into the hot tub, the jets affect my skin and it can hurt after a short time.
I have been improving! my mouth just feels like a cheese grater and goes in waves of being sensitive but it is no longer a bloody gross mess. I have a dentist appointment coming up and cringe as to what he is going to say.
my face is still bumpy but not as much. I finished my Benadryl and now down to eight prednisone pills a day. In eight weeks I should be off the pills and my adrenal system working again – fingers crossed!!!!
I have a brain injury appointment again near the end of the month and we are hopefully going to be allowed to do Botox to help with the headaches as the pain has come back. I am 24/7 at a pain level 6 or 7. But what is helping keep at bay is Peppermint and Frankincense oils. I am able to function when I apply every 4 hours. Sounds silly but works for me. My physiatrist (rehabilitation doctor) believes in oils, alternative treatments and vitamins to aid in my recovery. I have begun to take the vitamins prescribed again and feel energy from levels of vitamin D he prescribed.
I am literally shedding my old skin and beginning to thrive and feel comfortable in my new skin. Sometimes it is not too bad being a snake!