Friday, May 10, 2013

A Bumpy Ride

Slowly Coming To Terms With RA

It has been an interesting few weeks for me, learning to somewhat adapt to a new way of living and getting my freedom back, even if slightly more confined than before. I am laughing on the inside because as I write this I am in the bath, sounds insane I know but my bath is my happy place. In the warm water my muscles and joints hurt so much less than out of it, so much so that for around 2 hours a day I work / write while in it :)

Having had joint problems for years now finding out that I had Rheumatoid Arthritis gave me not only a sense of 'fear' but also one of relief. For years Doctors had ignored my plight for help almost shoeing me away under the premise it was probably Osteoporosis due to the amount of Prednisone I had been on throughout my life but deep down I knew it wasn't Osteoporosis. Even though the swelling was often visible, when Doctors tell you 'it's nothing and not to worry' you start to think that maybe what you are seeing and feeling is in your head. 

Right now I am just so thankful that finally I have a Dr who actually saw my pain and frustration and actually took the time to examine my legs (yes no Dr had actually done that up until this point) and run the tests needed to find out what was wrong and not only that but work with you to get the best results within your boundaries. You see growing up 'sick' I was always scared of getting into the routine of being ill, you see it all the time - people are put on medications that make them feel crap and and they become unable to be productive and have a good quality of life and that feeling not only becomes routine but also in a strange way it becomes habit  I have been on enough treatments to know that sometimes just because it works doesn't mean it's right for you. When you feel awful all the time, when you wake up in the morning you start to 'expect' to feel awful and then of course you do and it is because of that fear I really think long and hard about taking pain medication before I do.

I personally am REALLY sensitive to pain meds, they may take away some of the pain but they also make me feel tired, nauseous and unable to focus or even hold a conversation properly. It's not just one type - it is most. With the majority of pain meds that work I can't function mentally and for me keeping my mental state sharp and focused is more valuable than keeping my body pain free - especially from a psychological point of view as when I am unable to do things like work or keep myself busy I get depressed and once you do that, it is down hill from there. Now don't get me wrong, I still take them sometimes, especially if I am too sore to sleep, but I very seldom take them during day time if I can at all avoid it. 


So, how am I handling the RA? Well I could be doing better. It's very daunting having an auto immune disease especially one as disruptive to daily life as this and perhaps sadly and most shockingly of all one with no cure and let me tell you now, it's not an easy thing to handle mentally or emotionally being told something inside you is broken and can't be fixed. Luckily I am fortunate enough to be surrounded by a great group of people who have no idea how thankful I am for them just being around. Friends have really stepped up to help, even if it is just picking something up off the floor i dropped or removing my socks, sounds silly but it is those small gestures that mean the most to me. I know this disease doesn't just affect me, I see it affect those around me, I am not blind, I can see that worry in their eyes.

I am determined to find away to continue to live my life as normal as possible in the hope that one day I can run around like a loon again. I am still waiting on a Rheumatologist appointment hoping that the treatment they give works better than the last 3 I have tried. For now I am taking it one limp at a time (you see what I did there? I am funny). I have a wheelchair to help me get around that I use mostly outside the house and am looking forward to Paintball next week. I purchased a golf cart to help me get on the field and although I won't be able to run around the bushes being a Ninja like I used to I will still be on the field surrounded by people I love and that's all that really matters.


  1. Is there a word for feeling terrible about what someone else has to endure while at the same time being endlessly impressed by the grace and force of will they display by just getting out of bed in the morning? For being utterly baffled at how they find the courage to put on their warpaint and climb on crowded tables while pain beats in their veins like snake venom?

    For me, that word is "helpless." Because that's how you make me feel, Kitty. I talk to you and choke down a cocktail of anger and despair at a world that has been trying to discard you like a broken plaything for so many years. And I feel weak because I'm unable to carve out your pain and wear it like a heavy coat, if only for a while, so that you can sleep without it and smile freely.

    At the end of the day, I think that's all any of us want. To just see you smile without pain chewing at the corners of your mouth. That's all that matters. If we could take it for you, you know that would.

  2. Surely FPS Russia can pimp that cart out? I'm thinking something along the lines of a paintball APC or Tank?