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!
We’ve all seen (or at least heard of) the “Girls Gone Wild” video series…but are you ready for RA Guy’s latest twist on this popular franchise?
I previously posted this image on my blog more than a year ago, but thought it was time to share it again, especially considering my recent return to the swimming pool!
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Today’s post is dedicated to all those Superheroes who, despite all the challenges they encounter, still manage to find a way to incorporate exercise into their daily lives.
After missing a few weeks due to cold weather, flares, and extreme back problems, Rheumatoid Arthritis Guy is please to announce that he returned to the swimming pool earlier today.
As many of my readers know, just last week I was barely able to move, and was ordered to extended bed rest.
During this time, acceptable reasons for movement could be counted on one hand: bathroom visits, going to the kitchen to get something to eat or drink (when my oh-so-dedicated and patient partner begins to feel like he’s running the room service department for a major hotel), and medical appointments including, but not limited to, physical therapy.
Everything else just gets placed under the “optional” column.
And while I myself am a strong advocate of trying to incorporate exercises into my life as much as possible, the fact of the matter is there are times when it’s flat out not possible. It’s not a question of ‘should I’ or ‘shouldn’t I’; it’s just a question that is sometimes not even asked. And during these times, the mere mention of the need to exercise is one of the few things that can still manage to send me in a tailspin. Case in point: a Tweet that was sent out this past weekend, from an individual/organization that I know had nothing less than the best of intentions, included the phrase “To rest is to rust.”
And at that moment, I interpreted these words in the worst way possible. “Yes, I’m resting right now, which is exactly what I need! And if I’m rusting, so be it.” (If I were a character in Cars, I’d make Mater look like a shiny new Ferrari.)
But I quickly got over my sensitivity, and part of me realized that I was in fact angry. While many people consider physical activity to be a superfluous item in their lives, ever since I started my journey with rheumatoid arthritis I’ve always thought of it as something essential. (To the point where a few years ago, I did power yoga on a daily basis and actually reached the point of being able to enter into an unsupported ‘no-hands’ headstand!)
Which is why I’m not too happy when exercise gets bumped over to the previously mentioned “optional” column.
Last week, I kept on asking my physical exercise if there was anything I could to to both help these state that I was in, and try to prevent such a recurrence (especially with the back problems.) Her answer was always the same. I needed to return to the swimming pool and do my aquatic exercises, which had proven to be quite helpful during the previous months. Of course, she wasn’t implying that I needed to do such a thing at that moment, but was instead establishing this as a goal that I needed to reach. During yesterday’s session in which I showed a marked improvement after my weekend of bed rest, she suggested that I was ready to go back to the pool.
When I woke up this morning, my first reaction was to not go swimming. The pain, the cold, and the morning stiffness made me just want to stay in bed, under the covers. But I pushed myself forward. While I was shaving, I kept on telling myself that there was still time to call everything off and jump back into bed. I refused to give in, though. And then I told myself that I just needed to remember how wonderful it feels when I am actually in the heated pool, bending my knees and my elbows, swimming slow laps, doing my hand exercises, and just plain floating. And just like that, I had absolutely no doubt that I would be swimming within the hour.
And it was as wonderful as I had remembered.
If I need to move my exercise back into the “optional” column sometime again in the future, I’m sure that I will do so without any regret or self-blame. I know such a move would only be temporary, and that no matter what challenges I encounter, I will find a way to bring it back into my life. For the time being, it’s nice to know exercise it is once again an essential part of my daily routine.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
- Harvard Gazette: A Journey Into IllnessJanuary 12, 2015 - 4:19 pm
- Health.com: 11 Famous People With RAOctober 1, 2014 - 9:50 am
- Arthritis Broadcast Network: Spotlight On Arthritis SuperheroesSeptember 10, 2014 - 7:34 pm
- The New York Times: Actress, Artist, Sometimes Both At OnceMay 20, 2014 - 10:29 am
- The Columbian: Arthritis Not stopping 20-Year-Old Nursing StudentApril 15, 2014 - 3:25 pm