I was diagnosed with JIA in October 1993, when I was three-years-old. At this young age, it was probably a bit much for me to understand so me and my parents decided to call it Charlie. If nothing else, it’s less of a mouthful than juvenile idiopathic arthritis – though personally, I remember the good old days when it was juvenile chronic arthritis. Retro.
In my tiny, tiny mind, Charlie was an actual person who lived in my body and decided to make my joints hurt as met his own whims and fancies; it was as if I were the Megazord and Charlie were a Mighty Morphin’ Power Ranger piloting me – but evil and not a teenager wearing spandex and a helmet. He wore a very nice waistcoat, as it happens.
At one point, Charlie stopped being evil and his wife took over running the show. Presumably this was my young mind realising that this level of calculated infliction of misery is beyond the mental faculties of a man (jokes).
I seemed to deal with my arthritis quite well by understanding it through fictional characters. It became like a story really – “Oh Dad, please tell me the one about the white blood cells destroying my body!”. When I was 18, however, I changed from paediatrics to adult clinics. To help me on my merry way I was given a case notes summary, which is where I get most of my JIA-knowledge from.
I was born at Airedale Hospital in July 1990, and I weighed 8lbs 8oz. Total chubster. At three years and three months I was referred to hospital by my GP as being “unwell, lethargic, wanting to be carried, hand and leg pain, plus painful dressing”, according to the case notes. On closer inspection, I was found to have painful and swollen joints, the Infamous JIA Rash, and spiking fevers.
I had a blood test and my haemoglobin was found to be 7.4, my white blood cell count was 18.7, my neutrophils were 73%, and my plasma viscosity 2.06 (1.5-1.72), my CRP 158, and I have no idea what any of that means. It was bad news though.
I know now that when I have blood tests they check my CRP (C-reactive Protein), ESR, and LFTs (liver function tests). The LFTs are because my medicine can affect my liver, not because I like a drink. I mean, I do like a drink but that’s not the point.
My condition was “quite aggressive” apparently – I assume this to be my JIA, not my general temperament. In 1996, a report of “didn’t flinch when on seesaw” was a big deal.
It’s been more or less onwards and upwards since then, but there are an awful lot of stories for me to tell – some of them sad, some of them happy, but all of them about me, me, me.
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(Any opinions expressed in Collette’s blog are not necessarily shared by Arthur’s Place. Nothing that you read in Collette’s blog constitutes medical advice.)