Saturday, May 28, 2016

It all started one morning after the first big snowfall. The evening before I was in the snow for ten minutes taking photos with my nephew and showing him snowflakes for the first time. I was feeling pretty great that day.

My throat had been feeling really tight but it didn't hurt to swallow.
An hour before bed I looked down my throat in the bathroom mirror and gasped! I have never seen yellow strips across my throat before. I showed my mom and she nearly passed out. The strange thing is that it did not hurt. My throat was just tight.

I gargled Salt-Water and went to bed. 

When I woke up the next morning my throat was still tight. I laid in my bed for an hour after I woke up. It wasn't until I opened my iPad that I saw the light catch my skin. The light revealed all these small white bumps all over my hands. I had not taken any medicine at this time.



I rushed to the ER that morning. The doctor that saw me at Mission Hospital in Asheville, NC said it looked like a Strep Rash. I asked him about the strange bumps on my skin and he said it was probably strep. They did a rapid strep test which came out negative but he prescribed me Penicillin.

Overnight my throat closed up and the Penicillin made it worse.
My tonsils grew closer together and even bigger!
So I flew back to the ER the next afternoon.
They said that I probably had MONO and that if I take penicillin with Mono it will create a rash...All of my tiny white bumps turned bright red and itchy. I couldn't sleep, the itching drove me mad to tears, oatmeal baths did nothing but dry out my skin and made me itch more.



They didn't know what to do for me other than put me on Steroid IV and give me benedryl and they sent me home right away.

The nurse prescribed me Clindamycin to take from here...
I took this for two days and returned to the hospital even worse...














MY RASH BEGAN GROWING AN ORA~
Red puffy circles outside of every red spot and they slowly began to blend together. 


My lips swelled, my eyes swelled and my skin was now red from head to toe



I was rushed back to the ER again because my mother thought she would find me dead in my room. Everything was swelling, my throat was closing, my eyes were closing...
I returned to the ER and saw the same doctor that gave me clindimycin and she was less than surprised about my reaction. She also told me there may not be any room for me in the hospital to stay.

My rash went from red dots and spots to huge islands. It would rapidly change shape each hour forming into larger clusters.
The hospital kept me for two weeks on a steroid IV, benedryl & ambient to sleep.
I was on 60mg of Oral Prednisone and a Steroid IV. My body shut down.



I saw 4 Infectious Disease Specialists and 26 Nurses- no one could find a resolution. They even brought in medical students to give different analysis of what they thought could be wrong.
One of my infectious disease doctors declared Stephen Johnsons Syndrome and that they would have to fly me to a local burn center to skin graph my body if the steroids did not resolve my rash.

Eventually after about a week the rash began to fade from red to a dark brown.


I continued taking Oral Prednisone for 8 months
60 mg for 2 months
50 mg for a month BUT.. I had to go back up to 60 because my throat turned yellow again and started closing.
Then 60 for 2 weeks
55 for 2 weeks
50 mg for 2 weeks
45 mg for 2 weeks
40 mg 2 weeks
35 mg 2 weeks
30 mg 2 weeks
25 mg 2 weeks
20 mg 2 weeks
15 mg 2 weeks
10 mg 2 weeks
5 mg 2 weeks
OFF
 Took me 8 months to get off the medication- and it was hell

All of my hair fell out
I woke up one morning paralyzed and couldn't walk
Cramping in my legs/hands randomly over those eight months
Loss of thought
Loss of time- slow movement

I had my blood drawn nearly everyday I was in the hospital (2 weeks)
They drew blood from separate sides of my body trying to locate the problem and found nothing.
No organ issues, no abnormalities~
BUT my white blood cell count remained off the charts for months





1 comment:

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