Kelly McCoy

 

My name is Kelly McCoy, 1 was born 20 th February 1979, and live in Sydney, Australia.  I was diagnosed with Still's disease in February 1998.  I probably had one of the quickest onsets in the group - like 3 weeks, however, like everyone else, I had to go through 13 days of intensive testing in hospital!

 

I was at work the following day and I could barely open my jaw, it took me an hour to eat a sandwich because I was in so much pain.  I went to the doctor that afternoon and he took blood tests, my ESR was at 33, I didn't go to work on the Tuesday, he told me to come back on the Wednesday if I wasn't feeling any better, so I trotted back, my ESR was now at 73 (it should be somewhere between 10-15) he put me on the steroids, but I didn't know they were steroids, I started to pick up a bit after that.  He got my blood test back again and they came back saying that I had glandular fever - except I had already had it before so of course they were going to show that,  the following Monday night he rang and told me to stop taking the steroids.  Well my god I thought I was going to die.  That Monday night was the worse night in my whole entire life, my throat was so swollen that I couldn't swallow so instead of swallowing I was just dribbling, which meant I was totally dehydrated, I couldn't move.  I kept fainting with the pain.  Mum and I don't really know why we didn't go straight to the hospital that night, I think it was because we knew that we were going to the Doctors the next morning that we thought we would just wait.  I got to the Dr's and burst into tears and said "I had the worst night of my life," he admitted me into Hospital.  When they took yet another blood test, my ESR was 140 - top of the table.

 

So basically, I couldn't swallow, move my jaw, sit up or lift my feet into bed, all in 3 weeks.  My hair was falling out and had massive temperatures of 41.2, I was in hospital totally hallucinating.  Scary stuff.  I spend 4 months solidly in bed with mum and dad feeding me and washing me, at 19 it was pretty devastating.   You know you're sick when your cutlery is too heavy to hold!  I didn't work and barely left my bedroom the whole of 1998. 

 

I had a classic case of Adult Still's so it wasn't hard for the doctors to diagnose me, but they had to be completely sure so I had all the test done - a few days I had over 21 vials of blood taken, just to add to the whole ordeal.  I had the pink Salmon rash all over, the Dr's were actually that impressed with it that they wanted to take photo's and put it in the World Book of Rheumatology!  Dr Arnold actually said that he hadn't seen anyone so sick in about 20 years of medicine!

 

I am now down to 10 mgs of the steroids, still on the 100mgs of Indocids and had to increase to 1.2 mls of mtx, injected each week.  Mum has also put me on heaps and heaps of Vitamins.  I do hydrotherapy twice a week, which I think is what made me be able to walk again.  When I first started hydro, I was in a wheelchair, now I work 4 days a week.  This takes a lot out of me and I really need the Wednesday to recover but at least my brain isn't going soft! 

 

I still suffer with a lot of pain and the ugly rash - but I just take one day at a time.  I have a fantastic support network, that not only includes my family but some really special friends.  I have both lost and gained so much with this disease.  As unbelievable as this sounds, sometimes I think that getting Still's was the best thing that ever happened to me, as it really made me learn a lot about myself and others

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