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Introducing a Life with Ehlers Danlos Syndrome
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Introducing a Life with Ehlers Danlos Syndrome

I loved escaping to the sound of tennis shoes hitting the pavement as a teen. Each upset in my life was met with fierce steps and sweat rolling down my face. I found strength, courage, and determination somewhere between step one and step 10,000. Running wasn't just a hobby, it was my way of life. In high school, I ran on the cross country team. Each afternoon in the blistering Texas heat, I would let go of all my school issues and run. When I finally came home after school, I slipped on those beat up Nike shoes and ran even more before settling in to study and complete my homework. 

My sophomore year started well. I was dropped off at the school early one Saturday morning and loaded onto a bus with twenty other teens. We were headed to the police training field a couple hours away to run another race. The gunshot rang and everyone began pushing forward. I was 400 yards into the race when I found a small hole in the field. My knee popped and pain surged to my toes. My coach wasn't far from me on the sidelines and asked if I was okay. I nodded and continued on. 

As I passed the one mile mark, I knew I should stop, but every part of me wanted to keep running and finish what I started. My coach could see my struggle and told me I wasn't a quitter if I stopped, but I pressed on. I finished that race in 34th place out of 175 runners. My time was two minutes longer than any run I had in practice. I was devastated. As we loaded back onto the bus, my knee was swelling. As much as I wanted to go home and run my disappointment into the ground, there would be no running.

That was the first severe injury I had experienced as a runner. The sprains and strains before were nothing compared to the pain that set in on that hot Texas morning and never left.

 

It's been 17 years since I ran that race and have been diagnosed with a genetically inherited connective tissue disorder called Ehlers Danlos Syndrome. 

Every day is an unknown for me. I might wake up with manageable pain or I could wake up with my largest joints completely dislocated. I might be able to walk with supportive bracing or I might struggle to walk 100 feet in my own home. Over the last year, I've met more bad days than good. My physician has kindly reminded me that supportive braces will be replaced by canes and crutches over the next few years. If I'm lucky, I'll be able to stay out of a wheelchair for a while longer. 

I'm not willing to accept that fate at 32 years of age. I'm not willing to tell my children that they cannot go to the park because I hurt too much or I can't walk. I'm not willing to allow faulty collagen prevent me from living life. I am determined to retrain my muscles to support my joints and allow me to walk and play for many more years because both of my children have also been diagnosed with Ehlers Danlos Syndrome. 

I'm on a mission to redefine what doctors see as the way life will be. Will you join me on this journey? 

Leave a Comment

  1. Daniel Andrei Garcia
    Daniel Andrei Garcia
    Congratulations on making it to the front page Mysti! And welcome back!
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    1. MystiReutlinger
      MystiReutlinger
      Thank you so much, Daniel!!
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  2. pftsusan
    pftsusan
    Congrats on the front page Mysti and welcome to Rolling Without Limits.
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    1. MystiReutlinger
      MystiReutlinger
      Thank you, Susan!!
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  3. Tara Richardson
    Tara Richardson
    I’m so sorry for your condition, but I know what it’s like to live in pain and never really knowing how you are going to feel each day. Pain levels that swing, and dislocated joints are the worst. You don’t have to tell your children you can’t go to the park if you put your big girl pants on and get yourself, braces or a cane and yes if getting a wheelchair means you can spend quality time doing fun things with your boys without misery by all means use one. You will not get any medals for suffering the longest. What you very well might be doing is making it worse so if/when you do decide to use the wheelchair you have chronic pain and that NEVER goes away… trust me! Kids love to push wheelchairs and help... Go to the zoo, snag a wheelchair or scooter, and just have fun don’t think about anything but fun… You’ll realize what’s best given some time. Oh yeah and wheelchairs are a means of travel, not giving up, moving on.
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    1. MystiReutlinger
      MystiReutlinger
      I've taken this approach to my grocery shopping! I'm learning the ebb and flow of my body - my pain - my strengths - my weaknesses. Even though my pain is not new, the diagnosis came earlier this year. I know that a wheelchair is another tool in the toolbox for me - but for my boys, it's playing with me that makes the park so much fun. I want to hold onto that for even a few more years if possible. That most certainly is possible through comprehensive retraining of my muscles to support my joints. <3
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  4. Tara Richardson
    Tara Richardson
    Have you heard of Quad Rugby? You're so much like many of my friends who were dare devils before their accidents. It's a fun game that you might just love.. It's hardcore and will give you that adventure thrill you seek without damaging you. :)
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    1. MystiReutlinger
      MystiReutlinger
      I haven't heard of that before! I will look it up. :)
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  5. Tara Richardson
    Tara Richardson
    How does that work? "comprehensive retraining of my muscles to support my joints".. Is there a method or are you training them in therapy?
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    1. MystiReutlinger
      MystiReutlinger
      We don't have therapists here who know much about joint hypermobility or consistent dislocations as a result of loose tendons and ligaments. I've done extensive research on the function of tendons, ligaments, and muscles and am working one muscle group at a time through very specific exercises that will stretch the length and build strength to support my joints. I'm hoping I can take my own experiences in this body of mine and help others going through the same thing retrain their muscles, too.
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  6. Tara Richardson
    Tara Richardson
    I'm curious about your method. Strange that we share similar issues but completely different diagnoses.. My ligiments are loose and my joints dislocate but not from hypermobility but from a combination of weakness & extreme rigid tight muscles that never relax.. Yep you can say it, OUCH!
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    1. MystiReutlinger
      MystiReutlinger
      Oh wow, Tara! That is very similar to what I experience. As I work through my regiments and start seeing more results, I'll share what I'm doing and how.
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  7. Tara Richardson
    Tara Richardson
    We bought a"Whole Body Vibration" Machine and it will be here by the end of the week. Supposed to be gentle on your bones while making them stronger & it helps relax me which hardly ever happens unless I am in a hot bath. 10 = 60 min workout at a gym...
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