My First Month of Ankylosing Spondylitis

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A month ago, I was diagnosed with Ankylosing Spondylitis. It’s amazing how much your life can change in the blink of an eye. One day I was recovering from what I thought was some stupid injury I got from pushing getting back into running too hard and the next day I was diagnosed with an incurable auto-immune disease. I went from RICE (rest, ice, compression, elevation) to injections, pills, creams, and sprays. I went from “just take a week off” to this is how it’s going to be forever- we will work to find a way to manage the pain. Amazing. Just completely unreal. I went from I can do anything to you may not be able to do everything. Well, I’m sorry but I just won’t take that for an answer.

I am unique. I am individualistic, I love with passion, I work with desire, and I have an insatiable need to try new things, explore the world, and live my life as an adventure. I refuse to let AS define me. It may be a part of me, but it will only make me stronger and more motivated to prove to it who really is the boss.

I may need to give myself refrigerated injections once a week that sting like hell. I may need to carry three bottles of pills around in my purse at all times, and I may need to be armed with Benadryl spray and hand sanitizer, but so what? You may see them as weights dragging me down and holding me back but I see them as a way to get through the day the way I want to get through it- with vigor and vengeance.

On December 3, I will be walking the Jingle Bell 5K with my one of my best high school friends and a bunch of other Arthritis Foundation supporters. You can donate to or join our team here.

Next February, I will be running. Yes, I said running, the Pasadena Half Marathon. It begins and ends at the Rose Bowl- that imaginary place on the west coast that I grew up watching football games and parades near as a kid in Pennsylvania. In February 2012, I will be running 13.1 miles. It’s not too late to sign up here!

Next May, I will be biking from New York City to the capital in Washington, DC. It will be 300 miles over 5 days, camping and biking as part of the Climate Ride. I will be supporting environmental causes and bike safety. Help me raise enough to cover my expenses here or join Team SFS!

And that’s just the beginning. I look forward to sharing with you the trials and tribulations of Ankylosing Spondylitis as I take the world by storm. Living my life, the way I want to live it rather than the way AS tells me I should live it. I will not let AS define me.

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7 responses »

  1. That “tell me what I need to do and let me get on with my life!” is such a powerful attitude. You are one very strong, amazing woman.
    I will be in Pasadena in February to cheer you on!!!!
    Kathy

  2. Pingback: Today I Ran a Half Mile « Taking the World by Storm

  3. “A month ago, I was diagnosed with Ankylosing Spondylitis. It’s amazing how much your life can change in the blink of an eye. One day I was recovering from what I thought was some stupid injury I got from pushing getting back into running too hard and the next day I was diagnosed with an incurable auto-immune disease. I went from RICE (rest, ice, compression, elevation) to injections, pills, creams, and sprays. I went from “just take a week off” to this is how it’s going to be forever- we will work to find a way to manage the pain. Amazing. Just completely unreal. I went from I can do anything to you may not be able to do everything. Well, I’m sorry but I just won’t take that for an answer.”

    I totally identify with this (although wasn’t kind as fast a blink of an eye, the whole saga dragged out over years), I used to be a hardcore runner (won junior titles in athletics) and triathlete (had done several Ironmans, and was already entered in the next year’s Ironman too).

    Went from: this is weird, an injury! Can’t be running related??? Never had that before! (seriously, I was the perfect running machine, never ever injured seriously. Not even once)

    To: damn, this is being a real pain the ass (literally!) as it *still* here!

    To then: oh crap… this is going to last a while, but fingers crossed it will eventually go away. (as surely this is just some random one off? Right??)

    But then: girl friend can’t put up with the screaming at night I make from the constant pain (not to mention during the day, when I can’t even get up in the morning without her lifting me up) so she drags me off to hospital (against my wishes!! I’m a bit of hard nut like this).

    So then: lots of different doctors, all very quizzical (they engage in a little game of “pass the potato” too, as they examine me then determine I fit in some other specialist’s field so pass me along…).

    Then anyway: put on bed rest and I get pumped up with drugs, which seem to help eventually…

    Then at last: yay, is gone! I can start jogging again! (“sort of” jogging, still got little niggles which are gradually going away…) Even did one 5km race in an ok but average time of 22 minutes (was actually my first run ever after this started, not bad for the first hit out I suppose even though went though hell in the amount of pain it dished out to me)

    Some weeks later: WTF WTF WTF!! Not again… it is back 😦 Back I go on the lethal cocktail of meds as prescribed by the doctor and being a coach potato (no exercise for me! boo hoo).

    After two years: yikes, I’ve got to deal with this for THE REST OF MY LIFE?!?!

    Later on: but why the hell don’t they still know WHAT IS IT!

    Four years after the start of this nonsense and it is TODAY: which is when I got told by a specialist at the hospital I’ve got ankylosing spondylitis 😦 Oh well… I suppose it is good at last to know what it is and have a specific name for it.

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