Katelynn Stiefel

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My name is Katelynn Stiefel and I’m from Dickinson nd age 28

Well where to start in this journey we all call life.
I have always been a medical mystery since the day I was born. Feels like I’ve had everything odd you could ever get and always seems to take forever to get a diagnosis. But out of all this medical mishap I some how have become, what I think, a pretty amazing individual and I’m happy and proud to say that I have fought throughout this life and i am still winning and battling every day.

Well my medical journey began when I was in the 3rd grade. The doctors found or should I say I found bc of the massive bump sticking out of my leg what ended up being a very large tumor. We removed that and I for the most part have been tumor free since then. After that happened I had a couple years where I broke many bones. Including my hand and fingers which I had pins put in. I also broke my elbow and this happened all in middle school. Then when I was a freshman in high school I was having horrible back pain. I have always been a very athletic girl. Playing volleyball, basketball, track, and golf. I quit all of these sports except for volleyball (because that’s my favorite sport) all because of my back pain. I went to numerous doctors and chiropractors and also physical therapy. Finally after months we found that I had fractures in my l4 and my L5. The one fracture in my L5 was so close to my spinal cord that I was almost paralyzed. So they decided I could either have back surgery or go into a hard shell back brace. So being a freshman in high school I was not about to have back surgery and sit out a season of volleyball. So I went with a back brace (which we called numerous names turtle shell, dolphin fin, well you get the point). After my horrible 9 months in a back brace I was free, or what we thought at the time. I continued to have back pain and numbness down my leg but I was too stubborn to let it stop me from playing volleyball. 2 years down the road from that I started having heart problems. After numerous doctors and no doctor willing to do surgery on me because of my age and what the surgery entailed I finally found a doctor at the mayo clinic in Minneapolis, mn. I had numerous holes in my heart that made me go into afib to dangerous high levels. My doctor did ablations but could not get to the one that was causing most of my problems which was close to my na node he said it was too risky and if I could live with it then we would leave it. So we did and I have been doing ok with that for the most part so far. After that I have had numerous things happen such as getting whopping cough and west Nile. I also had malignant cells removed from one of my breasts. (I told you guys I’m just a medical disaster).

Now after all that I went to college to Louisiana and played division 1 volleyball. While I was down there I started to have heart problems again so my parents moved me back up to North Dakota “in case something would happen they were close by” so I came to Dickinson state and finished my college career here and got my degree in psychology. During my career up here I noticed I had a lot of pain in my hips, back, and hands. Thinking it was just from being an athlete I just brushed it off. I had numerous injections to relieve the pain during my season but never worked for me for very long. After my career of volleyball I still went to the same doctor about once or twice a year to get injections which I think was cortisone because of the swelling in my hands were so bad and it hurt so bad. After about 4 years of doing this he referred me to a rheumatologist. And I was FINALLY diagnosed with AS june 2013. This road of AS has been a very curvy and frustrating path but I have an amazing support group and people that have stood behind me. My boyfriend being one of those main people. He’s in the pictures with me 🙂 he has been there since day 1 of my diagnosis and has come to almost every appointment. I can’t even describe how much I love him not only for him but for his patience. He is always concerned on how I am feeling and he just knows when I have good days and bad days and on those bad days. He offers back rubs and anything he possibly can.

I go back to the doctor next month to talk about new medications because the ones I’m on now just isn’t working for me. I have constant swelling and losing movement in my hands and unbearable back and hip pain. So I’m hoping for relief with this next appointment.

In closing I wanted to share that even though AS is not a fun thing to have I’m glad that there are so many caring people in “our community”. We as a community deserve a pat on the back. If it wasn’t for everyone i would be lost and crying a lot. Everyone is so kind and so willing to reach out a hand or advice at any moment and I’m proud of every single one of you for holding on and staying strong for everyone else!!! We may be slightly or others more than slightly disabled but we are one strong group of people. I know that AS will only make me a stronger person then I already have become. It’s the positive things I will only take from this not the negative because if negative things ran my life could you imagine the person I would be!? So thank you to all of you for being positive and staying strong!!! STAND TALL MY FRIENDS!!!!


North Dakota, United States of America

One Response to “Katelynn Stiefel”

  1. Dear Katelynn,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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