Stevens Johnson Syndrome

I can now write about this experience without re-experiencing the trauma, as I am free of this terrible disease.

One day, I noticed a swollen lymph node on my neck.  Figured I was coming down with something. The next day I was experiencing fever and chills...temps around 102.  Then. Nothing, except a small rash on my right arm.  It was extremely itchy and I scratched constantly in my sleep.  The rash spread to my chest, and my stomach.   I got up the next morning and it was everywhere...head to toe.   Michael took  one look at me and said:"We've gotta take you in".  I went immediately to Chelsea's ER (shorter wait time.).  They wanted to send me to the U of M ER, as they were not equipped to handle "weird".  However, The U had 42 people in gurneys in the hallways, so I was transferred by ambulance to St. Joe's, where I was admitted.  The rash turned into painful blisters...and I was put on a morphine drip.  Even bed linens were painful.  Students were continually coming in to examine me, as what I had was quite rare.  Stevens Johnsons can be deadly, cause blindness, or develop into a chronic, lifetime, condition.  I was terrified.  I was in the hospital for 3 days in this condition.  Unfortunately, there is no treatment...only cortico-steroids and palliative care. The whole situation was made worse, as I had also developed "swimmer's shoulders" from my first open water race.  I had trained to swim a mile, and ended up swimming two miles.  I am still in PT for that.  After I returned home, I had 2 more "pain emergencies".  I was again put on morphine, given pain killers (in my case, Dilaudid).  The 2nd trip I went to the ER at UofM, and spent the day with docs and amazing nurses trying to control my pain.  It took at least a month to recover.  I would not wish this illness on ANYONE!  To this day, it's hard for me to talk about it.