today it’s exactly two years ago where it all started.
(I feel ready enough to tell my story from how I remember it to be, this is how I experienced it)
The first time I went to the hospital, picked up by an ambulance. I was already feeling sick since Monday. Because of my fear of hospitals I didn’t go until Wednesday the 23rd of March.
When I got there people seemed busy. My mom handled most of the talking, I was in so much pain I hardly remember much of what was said. All I remember is the itching, that never ending itching. I was light headed, I hadn’t been able to eat for days and hardly drank. Steven Johnson already kicked in pretty bad, my mouth was blistered and swollen, I couldn’t open it far without having to tear the skin from my braces.
The nurse asked me some general ‘’how do you feel’’ questions, and next thing I remember I’m in a hospital room. They talked to my mom. I remember being dizzy, and just wanting it to stop hurting and itching.
The nurses took my blood and were arguing whether or not it was just the flue. We knew it wasn’t, since the medicine causing it all warned for this. There was a near impossible chance for Steven Johnson, but by any skin irritation it was advised to see a doctor and stop the meds. Now here is where the hospital fucked up. They send me home without the blood results (which later confirmed SJS). They told me I had to keep taking the medicine no matter what. When they found out I had SJS they never called and tried to cover it up. I went home, and did as I was told, against what I already knew...
I got worse, and don’t have many memories of Thursday. I remember my mom calling the doctor again, saying I got much worse. All she got in reply is that I already went yesterday, so I just had to deal with it until Friday. I still had to take my meds, and it would probably be fine.
Friday came around and I was covered head to toe in yellow liquid filled blisters. everything hurt, was itching and burning. It’s the worst pain I’ve felt to this very day. I remember my dad coming home Friday, and as soon as he saw me he almost gagged. He went downstairs, and I remember him yelling at my mom I had to go to the hospital now. ‘‘She looks like she was attacked by mustard gas’‘
--side note, to this day mustard gas injuries are the best way to describe the way my ‘‘blisters’‘ looked. Covered like that from head to toe--
After some arguing my mom called the doctor, and to the doctors we went. My actual doctor wasn’t there for some reason, so we got moved to the emergency-only substitute place (not a hospital, just a small doctors place). The doctors there seemed panicky and immediately called the hospital, so I just had to wait for the ambulance. I remember trying to walk outsideand failing. The ambulance guy trying the grab me in time. My skin was already so bad that he ripped all my skin off with his thumb. (To this day I have his thumbprint imprinted on my shoulder as a scar)
We stayed in AAUH (the hospital) from Friday afternoon until Saturday morning.
At first they put me in a shared room, with two other people. Though that didn’t take long. I needed to pee, and since I had no skin left.. it hurt. I screamed so much, I almost passed out. I was crying, gagging and screaming my lungs out. Not much later they removed all the others from the room. I couldn’t sleep that night, and had an iv drip in my left hand. So I spent the night trying to draw with my right hand. After a good few hours I managed to make a chubby looking batman, I remember being proud of it.. even though it seems silly now, it meant a lot.
After everyone woke up I got rolled into the ambulance, no longer being able to walk. The ambulance people got lost on their way to Skejby (the other hospital). But eventually we got there. The ambulance guy tried really hard to keep me awake, though it was so hard not to just give in to the pain and fade away..
--I’ll continue at a later time since it’s still really hard to talk about--
