Well, after an overwhelming response to my first post (and I mean overwhelming – I got over 100 views on the first day I published my blog, so thank you if you were one of those people. Thank you again for coming back!), I’ve decided to do another.
The thing is, I’ve got almost two decades of (mostly hilarious) stories I could tell you, but I’m just not sure how to break them down yet. I’m going to kick off with a brief history of my condition and then we’ll take it a week at a time.
I was diagnosed with systemic-onset juvenile chronic arthritis in October 1993. I was three years old, and from what my nearest and dearest can remember, I’d been displaying early symptoms for a few months. I don’t have the rheumatoid factor though, which is a huge blessing.
When I was first diagnosed there hadn’t been any of the huge advances in treatment that there are now, so I was on a combination of ibuprofen (my faithful companion over the years) and prednisolone, which is a steroid. This meant that for the most part of my youth I was underweight but had massive chubby cheeks, which my parents refer to as “chobblers” to this day.
Since then I’ve been on a series of nasty drugs to control my arthritis, plus those to control or undo the side effects caused by the aforementioned nasty drugs, including growth hormone which made the world of difference to my height, despite the fact that I only stand at 5’0″ now!
At some point that I can’t quite remember, I was told that I had juvenile idiopathic arthritis – the same arthritis I’ve always had, just with a new name. I’m reliably informed by the internet that it was decided that the term “chronic” wasn’t always accurate, so the name was changed. Like Prince or Puff Daddy.
The ‘juvenile’ means I had it before I was sixteen; the ‘idiopathic’ means the cause isn’t known; and the ‘arthritis’ means it’s a form of arthritis, surprisingly enough.
There’s a pretty strong Wikipedia page on this. I’ve read all of it except the prognosis section – because, let’s face it, why would I?
JIA isn’t like the type of arthritis people have as they get older – that’s down to wear and tear. JIA is an autoimmune disease. This is where the body’s immune system can’t recognise itself and so attacks the parts of the body it doesn’t recognise. That’s hugely simplified, but that’s the general gist.
This means that sufferers have to take immunosuppressants (more commonly known for treating cancer patients) to lower the immune system, which is good for arthritis, but not so good unless you want to catch every contagious disease ever and never be able to have any vaccinations. If that is what you want, I highly recommend Methotrexate!
At the moment, I’m in remission or “burn out”, which is where JIA goes quiet for a few years before striking back in later life. I’m left with a lot of lasting damage to my body, which is what causes me the most day-to-day pain now.
It would be pretty easy for me to carry on from here, but I don’t think any of you would want to read a blog post *that* long. I’ll hopefully be revisiting all of these issues later in this blog and doing a much better explanation for them then. For now, thanks for making it this far : )