I was 26 years old. I had a cough for a few weeks that just didn’t seem to get any better. I also had a rash on my legs. I went to the doctor and was given medicine for the rash and for an upper respiratory infection. During this time, one morning my 18-month-old daughter woke up and after getting out of bed and picking her up out of her crib I had to put her down and sit myself down. I couldn’t carry her but just thought I was dizzy or something. After taking something for a headache, I rested on the couch for a couple of hours. Then I got up to go to the bathroom and I couldn’t walk. I didn’t know what was happening, but I knew it was serious so my Mom took me to the emergency room.
After different tests, they saw some swelling on my CT scan and decided to transfer me to a bigger hospital. I was flown to Barrows Neurological Institute at St. Joseph’s hospital in Phoenix and by this time the left side of my body was completely paralyzed. In their emergency room, one of the doctors that examined me said he was pretty sure that I had Acute Disseminated Encephalomyelitis. I had an MRI done that confirmed my ADEM diagnosis. We had never heard of this before and were told that it was rare and even more rare in adults. I don’t remember much about the first few days in the ICU besides terrible headaches, but I was awake enough and remember the neurosurgeon coming in and telling my husband that if they couldn’t get the swelling to stop they would have to cut through the top of my skull to relieve the pressure.
Thankfully they did not have to do that. They had started a treatment of high dose intravenous steroids and antibiotics that seemed to be working. I wasn’t improving as much as they hoped though, so they started plasmapheresis. I had one treatment a day for 10 days and improved tremendously, but my left side was still paralyzed. After two weeks in the ICU, I was transferred to inpatient rehab. The first day of rehab was the hardest and the worst for me. Realizing that my body was not doing what I was telling it to do was a really terrifying experience.