Such a pretty name for such a horrible thing.

It was my fifth night in the hospital.

It was the night that I almost gave up... and I was okay with it.

Two weeks of throwing up most of the time.  Nothing helped.  They pumped me full of four different kinds of anti-nauseants and the most I could hope for was a few hours of peace when they were all working at their peak.  Then back to the throwing up.  These were medications they gave to people on chemo... and they were doing nothing for me.

I remember the moment when I couldn't do it anymore.   It was 3am.  I had blown my IV.  I had 3 nurses desperately trying to find a vein to put another one in, but with no luck.  I got IM and SubQ shots of the drugs.  I sat straddled on my bed in the hospital, silver bowl in front of me as I heaved over and over again, violently. My hands a death grip on the bottom of the bed.  

I remember saying the words.

I can't do this anymore.

I remember the reassurance of the nurses.  Promising me in the morning the doctor would see me, they would figure something out. Four hours I had to get through, just four hours. I was strong, I could do this.  I knew they knew I didn't believe them.

My face was swollen, my eyes almost shut.  Every single pore on my face, neck, chest and upper back was a pustule.  I had a rash all over my body.  It came on fast.  It wasn't like this 12 hours ago.

I was exhausted.  I was tired emotionally and physically.  Tired of throwing up, tired of not sleeping, tired of not knowing.  Tired.  All I wanted to do was sleep... and if I didn't wake up... so be it.

The nurses suggested I lay down.  I wasn't really throwing up anything anyway, and it would be more comfortable.  They propped me so I had the bowl cradled in my arms, I lay on my side.  I pulled every muscle in my abdomen that night.   At around 6 a nurse came in and found a vein... in my wrist... that took an IV.  I remember just laying there watching her.  Too exhausted to move.  I have a thing about my wrists.  I don't like them being touched.  Normally the thought of an IV in one would be enough to send me into a giant freak out.   I didn't move.  I didn't care.  I was done.

Looking back that was a scary experience.  It wasn't scary at the time.  I was... calm.  I'd give everything to just be in peace.  Looking back and knowing that is what scared me.

That night changed everything though.  That rash that came up was the symptom the doctors needed to figure out what the heck was wrong with me.   DRESS Syndrome. Drug Reaction with Eosinophilia and Systemic Symptoms.  Such a pretty name for something that would mess with my life for... who knows how long.

The symptoms in the hospital confused the doctors-  I tested positive for Mono but had no normal mono symptoms.  I had high liver enzymes, Lymphadenopathy, leukocyte abnormalities,  my bloodwork showed an allergic reaction.    The rash cinched the deal.  My doctor had never seen DRESS syndrome, but the rash plus all the other symptoms, and the fact I had been on Carbamazepine for 5 weeks, it all came together (DRESS syndrome causes a reactivation of herpes viruses in your system, and will make you test positive for things you don't actually have... like Mono)

Instantly I was put on IV steroids, every 8 hours and IV pantoprazole.  

I stopped throwing up within 12 hours.

All the pustules disappeared within 48 hours.

I got to go home a week later... on oral steroids.

I still have a rash.  I still have to be on steroids.  The steroids are actually doing a number on my blood sugar, which previously had been great.  I now have steroid induced diabetes. Fun times.

My liver enzymes are also rising.   They just put me back on IV steroids.  I go for infusions 3 days in a row then I get reassessed.   It's actually kind of terrifying.  I try to be the positive, happy person I normally am, but there are moments where I am so friggen scared.  I'm sure it doesn't help that they took me off my anti-anxiety medication (they joys of having a lesion in your brain that causes anxiety- all the deep breathing and CBT in the world doesn't do a heck of a lot of good sometimes) but SSRIs can cause liver enzymes to rise, and my liver needs all the help I can get.   So I am sucking up the heart palpitations (I'm just trying to blame it on the steroids), and anxiety and... fear.  Or trying to at least.


Stay healthy... I'm trying to.