Tuesday, February 24, 2009
Fishing for a Cure Auction
Sunday, January 4, 2009
Riding the STP for FSH reserch
My name is Kalynn Dibble and I was diagnosed with FSH (facioscapulohumeral) Muscular Dystrophy 9 years ago. At the time doctors told me to curb all physical activity and find a desk job, because of the risk of accelerating muscle loss. I am pretty soft spoken, but also have tremendous drive when it comes to something I want to do. So I nodded and left the doctors office, knowing full well I wasn't going to listen to a word he said. I moved to Hawaii to go to school to get my degree in Kinesiology and Exercise Science and became a personal trainer. I continued to be active, working out in the gym, running, hiking and surfing. But I realized that I was really missing the competitive aspect of sports. Growing up I was always involved in athletics, but as my MD progresses the ability between me and my peers became apparent. It was then that I discovered the Challenged Athletes Foundation (http://www.challengedathletes.org/) and realized that there was a place for me in athletics. That place was triathlon. I almost immediately moved back to Washington in order to devote more time, money, and energy into training for triathlon.
About the time that I discovered this great community of challenged athletes I discovered Terry Colella and her family, and their tireless efforts to fund FSH research through their non profit Friends of FSH Research (http://www.fshfriends.org/). I attended their annual gala dinner and auction and met an amazing group of people who also had FSH. It was at that moment I really realized how having FSH affected my life. FSH is somewhat of an "invisible" muscular dystrophy. Meaning if someone were to took at me it wouldn't always be apparent that I have a disability. But I do. This just really demonstrates the need for more awareness of the particular muscular dystrophy. The affects are just as emotionally and physically devastating as more widely known (and funded) dystrophy's.
This year the anual Fishing for a Cure gala dinner and auction are coming up. I really wanted to do something to help support Terry's efforts as they mean so much to me. So I decided to take my two new found found passions and put them together. So I decided to put together a group to ride the Seattle to Portland bike race in order to raise money for FSH reserch. Terry was excited and said that they could promote it at the auction on Feburary 7th. This will help with donations for riders, but with race registration taking place end of January and the first part of Feburary. I am in need or riders, so if you are interested in riding the STP for FSH research, shoot me an e-mail.
Tuesday, December 9, 2008
No one ever says I want to grow up and be in the Paralympics....
This is the (very) rough draft of a letter that is going to Senator Murray's health advisers. I will be attending a meeting on the 12th of December in hopes of bring awareness to FSH muscular dystrophy and the lack of research being done.
I was diagnosed with FSHD shortly after my 20th birthday. I knew for a good 5 years before that that something was wrong, and after being diagnosed looking back all the signs were there. I was unable to whistle, drink through a straw and I slept with my eyes partially open. It wasn't until over the last year that I have come to realize the devastating effect muscular dystrophy has had on my life. Although I try and keep a positive outlook and 'live' my life, thinking about how my disease is going to progress and how it has changed the course of my life leaves me feeling lost and helpless.
My brain is programmed to be an athlete. I competed in athletics since I was very young and loved every minute of it. I marveled over gymnasts, for their absolute dedication to their sport. I loved the fact that they trained everyday for hours on end to perfect their craft. I was not a gymnast, but a volleyball player. But I took the same dedication and determination and lived for the day that I could devote everything I had to my sport. It became clear about my junior year that I was not progressing at the rate of my peers. In fact instead of peaking, I was declining. I was devastated, and for the life of me could not figure out what the problem was. I felt as though I was working twice as hard as everyone else, and yet my skills and endurance were getting worse. I finally convinced myself that my athletic goals were really not that important to me and that my heart just must not be in it anymore. Shortly after I was diagnosed. I continued to live in denial for the next 4 years about how FSH really affected my life.
In the last year I have started competing in triathlon. I have been lucky to be a part of the Challenged Athletes Foundation and actually race against people of similar disabilities. I train every day with a stern voice in my head not to work to my potential. Because if I do, I might permanently loose muscle. It's a double edge sword. I have to compete for my soul, but I am also doing irreversible damage to muscle in order to do what my heart desires. Every day is a constant struggle to find a healthy balance.
I will not have biological children. This has been a heartbreaking decision for me to come to. But with a 50/50 chance of having a child with FSH, I just wont dream of it. Bringing a child into this world, you want them to be able to do whatever they want to do. Not being able to do what my heart desires has been the hardest thing in my life. It haunts me every morning I wake up. And I would not be able to live with myself if my child had to go through the same thing.
It is hard because looking at me it is not always noticeable that I have a disability. I think because of the nature of this form of muscular dystrophy it doesn't always get the attention it deserves. It's physical and emotional effects rival those of other diseases and dystrophies, and yet it is not researched as other disorders are.
Sunday, October 26, 2008
Bitter Sweet
Monday, October 6, 2008
First Group Ride
Saturday, September 20, 2008
My ONE and ONLY rant for the winter
I can hardly believe that I rode my mountain bike on the road all last winter. Today it felt like I was riding through sand. And it took me an hour to go 10 miles....LOL! So the ride wasn't what I wanted it to be. At least I got a ride in.
The weather sucks. But I thought back to last winter and realized that I would be stoked on today because although the ground was wet....it's wasn't raining. Making it what would be classified as a 'good day.' There is something about training in crappy weather that makes me more focused. Small town + bad weather + not much to do = very focused training. Train, eat, sleep, work a little..... looks like it will be my winter. Not all a bad thing.


Oh, and this was at 2 PM!