Friday, January 24, 2014

What Rheumatoid Disease/arthritis means to me

In honor of the upcoming Rheumatoid Awareness day (On Groundhog day no less, please check out rheum4us.org for more details), I thought I would elaborate on this elusive foe that basically sidelined me for near the end of last year (I was sick in October and November, which led into some very busy holidays for me which meant little time writing - that's why things dropped off here.)

What Rheumatoid Disease/arthritis means to me

So, I have officially been on this journey for a year now. In short: it sucks.

Thank you for coming by and have a nice day.

Um, what? You want an explanation? Oh all right, I'll explain.



Imagine entering a carnival.

You are intent on having a good time and experiencing all there is to experience. Suddenly one of the carnival workers comes up behind you, forcibly routing you to a particular ride. You have no choice in the matter, so you board the ride.

It is the most miserable ride you've ever experienced - you're sick, feeling topsy-turvy, and you would do anything to get off the ride, but when that current ride ends and you step back on good ol' terra firma, yet another carnival worker wants to route you to another ride, this one twice as bad as the first. Reluctantly you get prodded along, dreading what is coming up next.

Okay, the above may be an oversimplification but for the basics of it, it is true. Your body's defenses (aka immune system) are doing the unthinkable - attacking your joints and your organs. I mean the immune system is supposed to be the hero of this picture, keeping you from major sickness and all, but in a surprise plot twist the immune system is the villain of the piece, leaving you with inflamed and painful joints. There is currently no cure for it, and as far as treatment is concerned it is far from one size fits all.

There are numerous drugs out there meant to treat this disease, each with their unique way of tackling it. Most tackle it the hard way by suppressing your immune system, which means that the whole of the germing world of germs is ready to come at you.

My track record? I have been on three different combinations of RA drugs so far. Some have held things at bay enough for me to function at a basic level, but none of them have been effective enough to keep my RA levels down to my or my rheumatologist's satisfaction. I'm currently awaiting insurance approval to see what drug I am going to try next.

I'm now to the part of the carnival where the games are and am standing in front of the wheel of fortune. Its spinning and spinning and I am waiting for the payoff. The waiting is the hard part, really. Of course I am doing what I can in the meanwhile, keeping my diet low key since the steroids I am currently on are throwing my blood sugar to crazy levels, along with walking whenever I can.

Those crazy carnival workers are behind me though, ready to drag me back on their rides.

It has been a tiring journey and the emotions have taken a roller coaster ride. Some days there doesn't seem to be any hope and I feel doomed to pain, sickness, and inflammation. It is then that I remember that I have a good rheumatologist working for me and answering my questions to keep me in the know. I am also still quite mobile, even if there are some days I need to walk with a cane.

Okay, so the journey doesn't always suck. Life goes on and I continue the fight - THAT'S what Rheumatoid Disease/arthritis means to me.



Some revelation, huh?

Till next time,
RAmbling Girl


Edited to add: RA Warrior is organizing a blog carnival to show the many faces and aspects of Rheumatoid Disease and the effort to bring forth awareness. If my experiences can help people understand, then I am more than happy to share them.
http://rawarrior.com/what-would-rheumatoid-awareness-mean-to-you/