I've been absent from my blog for a little while for very good reason - I thought I was getting close to the big "R" and didn't want to jinx myself by talking about it.
By "R" I don't mean retirement (though I won't lie, if I won the lotto tomorrow I'd think about it!), but remission. It's what we all aim for in going through the various treatments, and I know that to rheumatologists it's a sign of a job well done. I thought I was nearly there...
I re-started my abatacept infusions in the first week of December. Due to some weight gain, I was approved for a higher dose, meaning that instead of 5 mg/kg/month that I was getting with the subcutaneous injections, I am now doubling that and getting around 10 mg/kg/month. If you're not science-y minded that might not make a lot of sense to you: the gist is that I am now getting twice as much drug each month, and theoretically that may have been my problem before - not so much that the drug wasn't working, but more that I wasn't getting enough of it to do what it needed to do.
So about 2 weeks after my first infusion, I woke up and got out of bed without thinking about it one morning. Anyone with RA will tell you that mornings like that simply don't happen anymore. I got up and got halfway to the kitchen before I went "Good lord! What's going on here?!". I felt - and looked - healthy for the first time in what seemed like 2 years.
This feeling of well being lasted through the festive season and into 2014, with my second infusion topping up the good work of the first one. It wasn't until last night, after almost 11 hours at work and a couple of hours in the kitchen that my body had a little hissy fit. This morning my joints groaned and protested as I tried to bounce out of bed as I have done for a few weeks now. To be perfectly honest, it was like rewinding the clock back to the days before I was diagnosed; with the stiffness and pain reminding me that remission is still a little way off. It served to proved to my colleagues - some of whom are obsessed with the weather's association with my disease activity - that sometimes my body just flips me the one-fingered salute irrespective of everything else in the universe. and I have to carry on as best I can.
My little taste of health has been enough to whet my appetite, so I'll be continuing to do everything in my power to get me some more of it's deliciousness.
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I went to school with a guy named Stuart, who was one of those people I envied immensely - he was incredibly intelligent, was shown/taught something once and he knew what he was doing, and he had a fabulous sense of humour with it. Once we left school and went to uni to do our respective Bachelor's degrees, he decided to kick it up about a hundred notches and start his PhD. It may not sound much, and at the time I didn't think much of it, but I learned later on that it was just another way our lives ran in some kind of parallel - his PhD topic was an aspect of research in Ankylosing Spondylitis.
We caught up a few times for a beer whilst we lived in the same city, but Stuart was always too big, too smart, too bright for Australia. He moved to the US where he was working with one of the top research laboratories in the world, when he passed away at the age of 31. Despite his 'living the dream', it turns out there was more to his brilliant mind than he ever let on. We weren't particularly close, but I found myself crying awful, ugly tears when I heard the news.
I'm not sure who will cure me now, Stu - but I know you'll be dropping hints to the less-intellectually-gifted researchers you've left it with. May you find perfect peace now, with football and beers and some good jokes to tell Uncle Rudi. Much love.
