Responding to My Critics

After my last post celebrating five years since my last surgery, I received several, what can best be described as, nastygrams. In fact, these individuals sought me out on Facebook and Twitter so they could privately upbraid me for “encouraging patients to ignore their doctor’s advice” and “making other RA patients feel bad they can’t do what I do”. So, as I often do when I feel bullied by my own community, I went radio silent on social media for a bit. Somedays it’s just easier to unplug than to engage with people who’ve already made up their mind about how I choose to live with my RA.

I’ve cooled off since then, and I’m ready to respond.

  1. What’s right for me isn’t right for everyone.

This one’s so simple I can’t believe I even have to say it. Not only am I not encouraging other patients to ignore their doctor’s advice/orders, I’m painfully aware of the fact that my hip replacement journey is different than others too.

When I first discovered the incomparable Titanium Triathlete on Instagram, I was in awe of Dina. But, after the initial awe wore off, I felt pretty lame by comparison. She’s my age, has both hip replaced and does TRIATHLONS. It took me a while to shake it off and remember that my surgical journey is unique and just because she’s running triathlons and I’m not, doesn’t mean I’ve failed. Dina, who’s now my good friend/warrior sister/titanium twinsie, embraces our individual journeys and encouraged me to try Aquabike events to protect my hips accordingly!

  1. I’m still scared.

Was that last post pretty f-ing defiant? Yup! That doesn’t mean I’m not afraid that running and racing and everything in between will cause my hip replacements to fail. This fear is so all consuming at times that the slightest twinge of hip pain puts me into a DEFCON1 meltdown. It wakes me up in the middle of the night forcing me to question every decision I’ve made in the last five years. Worse than being scared is feeling selfish because I know another hip surgery and recovery affects Vin and my sisters and friends in ways that hurt my heart deeply.

  1. I reserve the right to change my mind.

Today I registered for 2 races, mentally bookmarked five more and looked at flights to L.A. for the Spartan Sprint weekend in December. I can train hard and I can train smart, but whether or not I’m able to race is a precarious balance of roughly a million other factors. Last year I chose to skip a race even though I’d registered and paid months in advance. It stung to miss it, but I knew that it was the right decision. And even though I’m beyond excited for the 2016 race season, if it came down to it I’d walk away in a heartbeat if I really had to. I hope I never have to make that decision, but it’s mine to make.

  1. I don’t run between races.

Not that it’s anyone’s business, but let’s clear up one thing: I’m not out there pounding pavement every day. Not even close. Occasionally I’ll work in some sprints or intervals, but my training plan is designed to strengthen my muscles and joints while protecting them from any impact. For this reason alone, I’ll probably never run better than an 11-minute mile. Instead, I focus on jumping rope, HIIT, kettlebells, and other strength training to build not only muscle but cardiovascular endurance.

  1. I can’t please everyone.

This last one is a reminder for myself.

My patient story is just that: mine. And while telling it has afforded me incredible opportunities and connected me with even more incredible people, there will always be people who have to shit on the happiness and accomplishments of others. Nothing I do or say will change that. And, forgive me if I sound like an asshole, but I feel sad for those people. Because even on those DEFCON1 meltdown days, I’m living my life on my terms – without compromise or regret.

7 Replies to “Responding to My Critics”

  1. Hah! Nastygrams? Funny stuff. I’m always gobsmacked by people who decide that what you write about that works for you personally must automatically mean you are telling other people to do the same. Time to put disclaimers on every single one of your posts? Bah! Love your blog.

    1. LOL “gobsmacked” is a fantastic word I’ll be borrowing in the future! I actually thought of adding a disclaimer to every blog, but frankly I can’t be bothered! I’m always SO careful to frame things in the context of “this is what worked for me” or “this is my experience” but some people just hear/read things they want to. Oh well! Thanks for your support and encouragement. Cheers!

    1. Thanks, Sherrie! Part of what keeps me going is the motivation to run races, etc. on behalf of people who can’t. It’s something I keep with me all the time, and has honestly kept me from quitting a race halfway through. I’ll keep rockin’ for you too!

  2. Anna, Thank You so much for telling your story. I was diagnosed Dec 5 , 2011 after years of living with Degenerative Disc Disease and my Doctor thinking thats all it was. after 3 surgerys on C4 C 5,6 and the back of my neck C1and 2 bonespurs that needed to be ground down for the marrow in my donor bones, he knew that something else was wrong. My numbers were off the charts. my neg 5 test was 497 and my positive 10 test was 998. i’ve been on every kind of biologic they have out there and the chemo pills and plaqunil, with no luck. then along came Actemra and methotrexate infusions, along with plagunil orally. I hit remission in august 2013. The same day i found out we had done it after a year of infusions, i also found out i couldnt have my infusions anymore because the day before i went in was my youngest daughters birthday her 18th and when she hit 18 i lost my medicaid along with hers also. I have been filed for DIs/SSI for 3 years in June. I finally got an appeal hearing on April 12th after 2 denials, so God willing it wil go through, i’ll get my Ins back and can move forward with surgerys on C7 and T1 and then after im healed enough from that one, i can get L1 done and then get back on my meds. I have obama care (scare)!!! PCN which covers no speciaists and thats all i see and covers only 4 out of 13 prescriptions, none of them being for my R/A, except my NSAIDS (Naproxen) I have Spinal Stenosis and Fibramyalgia (no idea how to spell that one) lol 🙂 but the pain from the DDD and RA totally outweigh the pain from the other 2, i actually forget about the SS and Fibro. I was on the track and volleyball team in HS and a competing body builder for 3 years until my wrists coudn’t hod the weight anymore. The Doc’s think i went un diagnosed for at least 10 years. meanwhile i’m running my construction cleaning company and crippling my body and not even knowing it, i held out for 2 years after diagnose and just coudnt do it anymore. It takes alot for me to say that outloud and ask for help with the stupid little things like opening my pepsi bottle or a ziplock bag or picking up small things off the counter and even using scissors. things that people take for granted everyday. But i’m with you, i could lay in bed like i really want to do some days, or i can fight and get my little ass out of bed. like the R/A COMMERCIALS say, ” a body in motion stays in motion, and a body at rest stays at rest. This coudnt be more true with the exception of flareup days, and they just freaking suck!!!!!!!! You are an inspiration to the R/A family and i pass a nickname on to you, Anna the Amazing Animal, from Wendy the Warrior. keep fighting the fight sweetheart, don’t let it win until you say its over it’s not over, we will decide. P.S. forget the haters that don’t want to understand you. This life with these diseases is enough to live with, you don’t have to own the others bullshit. pray for the unkind and forgive the unfriendly, Love ya Anna the Amazing animal, <3

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