the journey of a butterfly

khaliah's journey with sjs/ten

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This is what I remember...

By Khaliah, Apr 8 2014 02:10AM

3/28/14


There are still days I wake up and can’t believe what happened to me actually happened. Sometimes I wonder if this is all just a nightmare that I am eventually going to wake up from. While I was sedated, I had very vivid dreams that I still think actually happened, so maybe this is just a dream…


But everyday, I realize that its not a dream. And every day I look at my face in the mirror and I start to remember different things that happened. I’m not sure if it was the medication I was on in the hospital or just the ordeal itself, but it wasn’t until recently that I started to recall everything that happened. This is what I remember...


I remember waking up at about 3 am on the morning of the 18th of January and something just didn’t feel right.. A couple days before that, I went to the ER and was diagnosed with the flu. I’d never had the flu before so I wasn’t sure what to expect. All I know is that I felt horrible. I had a fever, was extremely exhausted, and I started getting blisters in my mouth. My temperature was up to 104 at one point so I thought the blisters in my mouth were from having a high fever. But when I got up to go to the bathroom around 3 am, I noticed that it felt weird to walk. I got up almost every hour to go to the bathroom and each time I went, it was more difficult to walk. By 6 am, I was crawling to the bathroom. When I flipped on the lights, I was horrified by what I saw. I was covered in a rash and had huge blisters on my feet, hands, inside my ears and on my eyelids. I crawled back into bed, still thinking this was all flu related. But then I started thinking about everything I had heard about the flu and quickly realized this was more than just the flu.


I called my friend Kathryn to take me to the hospital. She got to my house a few minutes later and I had to crawl out of my house, down the stairs and into her truck (which she had to pull into my grass). She suggested calling an ambulance, but being my mother’s child, I refused to pay for an ambulance ride! Luckily the hospital is less than 2 miles from my house, so we got there quickly. The next thing I remember is trying to being wheeled into the isolation room in the ER and the doctors asking me what felt like the same twenty million questions and crying because I was in so much pain. They told me they needed a urine sample but I refused to give them one because it hurt so bad to urinate.


Everything gets kinda fuzzy after that. I remember them telling me they couldn’t treat me and that they were going to send me to Macon and I’m thinking this is a hospital, what do you mean you can’t treat me!? But what I didn’t understand was how serious this condition is. Then I remember calling for Kathryn, who was gloved and masked up because she is a paranoid hypochondriac and thought she was going to catch whatever I had! The next thing I remember is riding in the ambulance to Macon and being wheeled into the ER there. I remember my nurse asking me if I was comfortable and giving me pain medicine. Then I remember a doctor coming in and telling me that I had Steven Johnsons Syndrome. Had no idea what that meant at the time. Then I remember one of my nurses, Christy and I taking a picture together and talking to her about taking pictures (always recruiting new clients! HAHA) and then…the next thing I know, I was waking up 5 weeks later.


That’s pretty much what I remember!


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