… doesn’t really do squat for me and the fact that I don’t particularly like apples has nothing to do with it whatsoever! Since I moved to Dubai, I often get asked why I seem to spend more time at home than I actually do in Dubai. The answer is quite simple really – I have regular dates with my Rheumatologist. Yes, I suffer from Rheumatoid Arthritis or RA for those in the know OR people like me who still aren’t quite sure how to spell it! While I never imagined that my condition would ever be a topic of discussion on my blog, it is as much a part of me as everything else – it just doesn’t live in a happy place.
I’ve decided to touch on it because the last few years have been particularly difficult. It’s one of the reasons why my blog gets stunted for ages at a time. And while I hope this doesn’t come off as a pity post, it’s just been doing my head in lately and I needed a release. So, let’s hope it’s a little cathartic for me and may even help someone else suffering the same frustrations to know they’re not alone.
I was first diagnosed at 27 when a ganglion on my wrist just wouldn’t quit, so I have been living with this exasperating condition for close to 20 years. I do consider myself quite lucky as I caught it relatively early and was able to manage it to the point of remission in my mid/late 30s. But after 2 years in remission, it decided to come back with a vengeance. I suddenly understood the spectrum of pain that can be associated with the disease and it ain’t pretty. Then I moved to Dubai and it literally went into overdrive – I started to believe I might actually be allergic to sand!!! And no, there is no evidence to prove or dispute that …. yet. But that’s the thing – there’s no one thing that makes it better or worse for each individual. It’s different for all of us. One day you’re fine, the next day you can’t get up. What we do know is that it is an auto-immune disease, there’s no cure and you just hafta do the best you can to manage it.
What’s more frustrating than the pain sometimes, is trying to get people to understand it. When people see me, they say “you’re too young for arthritis” – and yes I am, for the grandparent kinda arthritis you’re thinking of but this is not that. This is a lot more complicated and can affect so much more of your body. I have nodes, bumps and mild deformities on parts of my hands (it really gives your vanity a bashing) but as long as they’re not on my organs – yay to me!
While it’s been easy enough to forget I’ve been living with this disease for the most part, the last few years have been a real rollercoaster. Most of the time, people close to me don’t even know I’m in pain, until it gets too much. There have been times when I’ve not even been able to open a bottle of water until someone gets home – it makes you feel like quite the princess having people do the littlest things for you. But those are the the bad days – it’s not everyday. The Princess thing on the other hand …. I milk that for as long as I can lol!
I try to deal with my condition much like my father has dealt with his insulin dependent diabetes. He has never let his disease define his life. He’s so in tune with his body – he somehow manages to adjust his insulin to how he wants to live his life, right down to what he wants to eat for lunch. He’s still strapping at 81.
And that’s why most of my Doc appointments are a negotiation. I adore my Doc – she on the other hand probably thinks I’m delusional. Every time she puts me on new meds, my first question is – “so, can I have wine with that?” And before you say anything, my Doc knows that like my father, this disease is not going to get in the way of me living my life. Of course I’m just kidding about drinking wine with my meds … it’s always at least 4 hrs hours after!
Since I moved to Dubai, I’ve had to change medication twice which brings it’s own set of wonderful side effects. My current meds costs more than most people’s rent. And forget about insurance! Because I was diagnosed so young and didn’t think about that kind of insurance in my early 20s, no one will now insure me no matter how much I offer to pay for the premium.
Regardless, I am thankful I’m still able to afford it. Will this medication stick? Who knows! I’m currently home now because I had a flare up but it’s only been a few months on my new meds. I’m hopeful it will get better. I’m blessed to have a wonderful support system in my Poss & my Mum and to be honest, I’m still much better off than a lot of RA sufferers. So if you know of anyone that suffers from RA, the best thing you can do is give support. Not the “you should try all these other things blah blah” kinda support … just be there and listen to understand, not reply – if they want to seek alternatives, you’ll know about it. Oh and remember, don’t close those jars too tight!