I regularly receive many emails from other individuals who are living with Rheumatoid Arthritis, and make a point to respond personally to each and every message, even though it sometimes takes me a few weeks to get around to doing so. Some people have lived with this disease for more than 20 years, and have told me that they have never been able to laugh about anything related to RA…that is, until they stumbled upon my blog. Other people send me wonderfully supportive messages whenever I share that I am in a particularly bad flare, and both help and inspire me more than they will ever know. (There’s one lovely lady who is working on her pilot’s license…she and I trade secrets back and forth on how to continue moving forward, physically and emotionally.)
Recently, I have noticed an increase in messages from people who have been recently diagnosed with rheumatoid arthritis. All the messages that I receive have a profound impact on me, but those that I receive from recently diagnosed individuals really make me stop and think. They remind me of the own period in my life immediately preceding and following my diagnosis. They remind me of the anger and the pain and the denial and everything else that whirled around in my head for months, if not years, following that event. I am also reminded what it was like, just a few short years ago, when this currently thriving online community of people living with RA did not exist. (The first blog I eventually found, a couple of years later, was Sara’s The Single Gal’s Guide To Rheumatoid Arthritis.) And them I return to the present, and I’m reminded of how happy I am to be a part of this community.
One of these recent messages, from a 23 year old woman who was recently diagnosed with RA, stood out even more. It stood out for the strength. The strength of this gal who was comfortable enough to share some personal information with me. They strenght of her story. The strength of the words themselves. And most obviously, the strength of the person who wrote those words.
When I responded, I asked her if she would be willing to write a guest post for my blog. (I think it’s important to share the feelings and personal reactions that result from being diagnosed with a chronic illness.) Bri graciously accepted my request, and I’m glad she did. Her words follow.
I was diagnosed with RA this past March so I’m still experimenting with the drugs (not usually something youre so happy to admit….”oh yeah mom guess what drugs I’m experimenting with this week”)heh…anyway.I’m doing much better than I was just a few months ago.I’m showering by myself,brushing my teeth and hair,and I’m able to put on my own socks…..most days.Really kind of depressing to admit that at 23 years old I’m seeing those normal everyday activities for anyone else my age as huge accomplishments and major improvements but I’ll take what I can get.
I first started noticing pain and stiffness in my joints after a car wreck I was in.Totally not my fault.Lady decided not to stop at a redlight resulting in my little cavalier being squished in a 4 car pileup.Miraculously I was the only one hurt and all I had was a kneecap knocked out of the cradle.Ouchies but not a big deal really.Didnt even go to the hospital.Eventually ended up getting surgery to get it put back into the cradle.Which leads me back to noticing the joints….I couldn’t straighten my elbows to let them put the IV in.weird I thought but no biggy.just stick the needle in my hand and lets get this party started.After surgery things started going downhill fast.the knee never got any better.then my hands and shoulders started hurting.then the other knee.I just thought it was from using crutches post-surgery.It just kept getting worse.i finally went into the hospital to have tests run….which of course came back negative.imagine that….At the time I didn’t have insurance so I figured its all in my head.just need to build up my muscle strength and quit being such a whiner.yeah I know.not my brightest moment.it got to the point that I finally gave in and moved back home with my parents.they’ve been amazingly supportive.I don’t know what I would’ve done without my mother.she managed to get me in to see a doctor who sent me for more tests which finally got me an appointment with a rheumatologist.at this point I was pretty much bedridden.I couldn’t even sit up in the bed without help.my hands were completely useless.my mother was making me smoothies because I couldn’t open my jaws enough for anything bigger than a straw.the first batch of prednisone was a miracle.I hadn’t even known how much pain I had been in until I finally got some relief.i wasn’t 100% but I was up out of the bed.i could use my hands enough to feed my self.i could walk to the bathroom instead of using the glorified chamber pot.i went out to eat with friends.i was exhausted but I was so happy to almost feel like me again.then the course of prednisone ended….those were some of the worst days.I was angry constantly and anytime I wasn’t screaming at anyone who would listen I was curled up in bed weeping.I don’t handle frustration well.we have me back on prednisone now as well as methotrexate and plaquenil and folic acid. I’m grateful most days.Other days I’m angry.Angry at my joints for hurting.Angry at myself for needing as much help as I do.Angry at my doctors for not having a miracle pill.Angry at my hair for falling out(thanks for kicking me while im down methotrexate….)Pretty much just one big angerball.Not my best moments.I usually end up not knowing what I’m so angry about.Then the crying starts.Crying because I don’t understand.crying because no one else understands.crying because with the amount of pain im in what else am I gonnado.when I get to this point I figuratively kick my own assets for being an angerball and then a weeper.i mop my face off,blow my trumpetousnose,sniffle a bit and then I force the biggest cheesiest jaw splitting smile.doesnt matter that theres nothing to smile about.gotta be better than letting my face run off my chin.then I list the things I can do.i can wiggle my toes.i can giggle.i can stick out my tongue.i can sing a song.hey look there goes my foot tapping to my song.if I can do that then I can certainly roll my ankles……well maybe not quite yet…..back it up…I can tap my foot.I can whistle.there we go.now I can roll my ankles.whew.look at me.from weepy angerball to crazy person whistling and tapping my foot.improvement?i like to think so.chalk it up to huge amounts of meds but I’d say that’s a victory for little old me.every day gets better.i get stronger.the pain gets less.and I forget the bad days faster.i spend time with friends.i talk to one of my 9 siblings.i talk to my mom.I read RA guy’s blog and I try to remember that my RA isn’t all there is to me.I’m a left-handed,quirky, bright, random, witty, generous, loving,talented,adventurous dreamer who just happens to be living with RA.And I like to think I’m living well.
Thanks again, Bri, for writing this guest post. Sharing your story will help many people living with rheumatoid arthritis, whether they’ve been recently diagnosed or not.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!