Tuesday, March 18, 2014
Me, Myself and RA
Who am I?
If you look at my medical file, it will say:
"39 year old female (soon to be 40!) with rheumatoid arthritis (RA), RF (rheumatoid factor) positive, anti-CCP positive”
But behind every file is a real person. Don't you ever forget that! So who is the person behind this medical file (and this blog)?
I am the wife to a wonderful husband. I am the proud mother of amazing twin girls. I have a love of science, education and research (I'm a geeky gal with a PhD in Biochemistry). I find my escape in music and dancing. And most of all, I value the time spent with my family.
Then like a slap in the face, RA happened and changed everything. I can no longer do so many of the things that once defined me. Every day I must learn to adapt and rediscover who I am and remember my limitations. I watch my family, who I love so much, make their own sacrifices because of me. We forget that RA affects more than just the patient.
So who am I? I'm not so sure anymore.
After much soul searching, I have decided to create this blog as a place for me to share my stories and experiences, and to educate both those with and without RA. A place to laugh and cry about the daily struggles and frustrations endured. A place to bring inspiration and hope to others. A place to find therapy and healing. I don't want to ignore the elephant in the room (rheum) any more, I want to shout out for the world to hear that there is AN ELEPHANT IN THE RHEUM!
Being such a private person, sharing my thoughts and stories is SO out of my comfort zone, yet something in my gut says this is the right time to take control and be okay to talk about it. Yes there is an elephant in the rheum and I think that elephant is me. Slow but getting stronger.
How it all began...
My official diagnosis came back in June 2012. But like many with RA, the signs were on the walls much sooner than that. As I look back there had been strange things going on with my joints for years. However, nothing lasted long enough to warrant a trip to the doctor. I would brush it off thinking I am such a klutz and just forgetting what silly thing I must have done. Excuses, excuses!?
I remember waking up one morning for my weekly tennis lesson with a swollen elbow that would hardly move. I remember trying to recall ‘what on earth’ I had done. The tennis pro would not let me have my lesson that day, he told me to rest it. So I took it easy and sure enough my elbow got better.
I remember being near the end of my pregnancy with my twins and the joints in both thumbs became very painful with almost complete loss of movement. My twin pregnancy had offered all sorts of uncomfortable aches and pains and apparently this 'thumb thing' was not an unreasonable problem to see. I was assured that after delivery it would settle down and go back to normal. Well, it took several months for my thumbs to return to working order, in the meantime my husband and I were just too busy with the babies to worry about it. I just adapted to how I did things (you should see how I hold and use a knife to this day! Bizarre).
Then one day my left knee swelled up. Like in the past, I simply dismissed it by accepting that I AM a walking disaster. My knee would sometimes become impossible to bend, with the swelling going up and down. Many times I thought, I should go see a doctor, I probably just need some physiotherapy. My knee did this off and on for about a year, sometimes being completely fine. Then that elbow, the same one that was a problem years earlier, swelled up and no longer straightened. Then a knuckle on the ring finger on my right hand became huge. No rings would fit anymore. Could I really be that klutzy? Or is something else going on?
Like the scientist in me, I starting looking things up. Everything pointed to RA, except for the fact that I was not symmetric. Only my left knee was bad, my right one was fine, my right elbow was bad, my left one was fine and only one joint on the right finger was affected. I used this one difference to give me piece of mind that I could not have RA, it must be some form of "Grandma's arthritis".
I walked into my family doctor's office, he looked at my joints, he commented how swollen they were and how much heat they were radiating. They were on fire! Really? That's not normal? was my reply. He was confident that it was RA. Of course, I argued, this could not be happening. (I actually trust my doctor's judgment but sometimes the truth hurts). To settle the argument he said, “Let's run some blood work and some X-rays and we will meet again to discuss the results”. I had just bought myself some more time, more time to keep living in denial.
Then that fateful day arrived, there would be no more living in denial. All the blood work came back positive, in fact, it was VERY positive. I had RA. The only good news from that day was that the X-rays showed my joints were not damaged… yet, we had caught it early.
I was referred to a rheumatologist. It was summertime and I wouldn't meet my rheumy until the fall. I would get one last summer before I would become a pill popping, needle junkie, poked and prodded lab experiment.
I had no idea what roller coaster I was about to ride.
Well, it has been almost 2 years since that fateful day of diagnosis. Many drugs later and many new joints affected, I am still searching for something that will help settle my RA and perhaps give me a piece of my life back.
Thanks for joining me on my journey. A roller coaster is always way more fun with friends!