Cruising for a Bruising

My Relationship with Shopping

2011-09-06T12:36:00.000-07:00

Just about every time my Johnny and I are perusing a store, I get the question, “you really don’t like shopping do you…?” It normally comes up, when I start acting like a 5 year old who is tired and hungry, and ready to go home 30 minutes ago. The truth is I really like shopping. It’s something my Mom and I used to do a lot, but as my FSH has progressed it has become something that is no longer “fun” for me.

I have talked about risk vs reward before. Example: Something like hiking the Na Pali Coast is potentially very risky in the fact that the strenuous hike will further deteriorate my condition. BUT…. The reward is HUGE. Therefore in my mind it is totally worth it. Standing in a florescent lit room for 2 hours listing to techno or oldies…. not so worth it. It’s really hard to explain, but just standing for long periods of time, tends to be the hardest thing on my body.

For now I will enjoy perusing stores from the comfort of my computer, allowing me energy to do other things….. like riding. As well as riding….. and then more riding. Maybe further on down the road when I require 4 wheels to get around easily I will take to the neon lights again. For now, my pocket book thanks me.

2011 Update

2011-01-24T09:48:00.000-08:00

Seems as though I tend to start my blog up again around the annual Friends of FSH, Fishing for a Cure annual auction. 1. Because I start getting excited for the auction. Especially this year, since there have been so many huge and exciting breakthroughs in research. 2. Because it’s that time of year again that everyone is gearing up training for this years’ season. With the Tour Down Under wrapped up today, the countdown for the Tour of California begins.

So where does that leave me? Well, I’m in the gym working on a lot of functional training and trying to really dial in my nutrition to maximize muscle gain. I didn’t apply for a CAF grant this year. Mainly because my body is changing so rapidly, I wasn’t able to commit to doing anything specific this year. The plan is to take it easy, get strong, dial the nutrition and see what happens. Last year I put way to many expectations on myself and it backfired. Well, not really. Backfired as far as any racing goes. I got to do some pretty amazing life changing things that weren’t race specific. So although I wasn't training regularly, I was hiking the Napali Coast and doing a bunch of other kick ass things.

I’m vicariously living through Johnny’s season : ) He plans on doing Bosie 70.3 again and a handful of other races. He’s got his races dialed into TrainingPeaks and I’m enjoying using my trainer’s knowledge here and there when he asks.

On the agenda this week….. give our bikes a bath! And mine needs to go to the shop for a little TLC.

Thursday, August 19th, a HUGE day for those with FSH!

2010-08-19T20:33:00.000-07:00

Follow up on ACE-031 and finding the cause of FSH!

A good friend of mine alerted me this morning to the fact that Acceleron Pharma has received FDA orphan designation for ACE-031! Orphan designation is described here. And then started the flood of awesome e-mails regarding the advancements in FSH research. Said to be the biggest breakthrough in FSH in the last 20 years......

On Thursday, August 19th it has been published in the Journal of "Science," that scientists have figured out how the genetic flaw they have found to cause FSH actually brings about the disease. It has to do with DUX4 (on the long arm of chromosome 4) being overly active (or expressed) in people with FSH. DUX4 makes protein more harmful to muscle cells, said to be the cause of our deteriorated muscles.

DUX4 was talked about at the FSH Society conference in Las Vegas. I knew that some great information and knowledge were being obtained by the researchers and they were moving forward, but really didn't fit it into the larger picture till today. Reading the flood of articles in an A + B = C format verses deciphering what the researchers were saying, seemed a little easier for my little brain to handle. They did say this article was coming out and I will check all of my notes from the conference when I get home to try and help shed a little more insight into the development.

What is very exciting on top of all the research news, is the fact that the information can be found in The New York Times, with an article titled "Reanimated 'junk' DNA Is Found to cause Disease." Referring back to our meeting with Senator Murray's health advisor, it was blatantly said that those with the loudest voice receive the most funding. The education of FSH and having the public aware of the fact that this disease actually exists and how prevalent it is, is a huge step in the right direction.

Speaking of the public becoming aware of FSH.... check out this article in Vanity Fair that popped up today (rather comical), "Zombie DNA Can Cause Muscular Dystrophy." Being frightened by "Zombie DNA" might wake up the public I suppose!

One thing is for sure, now scientists will be able to focus drug development and have a clear direction in being able to find a cure for FSH.

Other articles on the advances in FSH research found today:

Local Press Release on Eurekalert.org, "International Research Team Closes in on Cause of Common Form of Muscular Dystrophy" --- A few shout outs in this one!

e! Science News Article, "Scientists Pinpoint Earliest Steps of Common Form of Muscular Dystrophy"

Bloomberg.com, "Muscular Dystrophy Gene Riddle Cracked, May Lead to Treatments, Study Says"

Hope for a Therapeutic Drug to Treat MD

2010-08-10T16:38:00.000-07:00

Dr. Kathryn Wagner was one of the speakers who attended the FSH Society International Patient and Researcher Meeting in Las Vegas. (Which there will be more information on to come) She believes that ACE-031, made by Acceleron Pharma Inc., will be effective in FSHD.

ACE-031 is a drug being developed to increase muscle mass and strength to treat neuromuscular diseases.

From the Accelron website:
ACE-031 is an investigational protein therapeutic that builds muscle and increases strength by inhibiting molecules that bind to and signal through a cell surface receptor called Activin Receptor Type IIB (ActRIIB). ACE-031 is a completely human, recombinant fusion protein that is produced by joining a portion of the human ActRIIB receptor to a portion of a human antibody. This creates a freely circulating, decoy version of ActRIIB which removes proteins, such as GDF-8 (myostatin) and other related molecules that limit the growth and strength of muscle.

Dr. Wagner brought to light how little attention FSH is receiving. Opening her talk with the statement that FSH and ALS have the same prevalence in the population. The difference between the two is that at this time there are only 3 studies and no drug trials that are going on for FSH, but there are 64 studies being done on ALS...... 21 of which are with novel drugs (not FDA approved).

Acceleron's press release:
Acceleron Pharma Receives FDA Fast Track Designation for ACE-031 for the Treatment of Duchenne Muscular Dystrophy

A start in the right direction.

Thanks to the FSH Society for the great speakers.

With Amanda at the FSH Society International Patient and Researcher Meeting

Weekend of Firsts

2010-08-10T14:35:00.000-07:00

Crazy wind while checking the bikes in Moses Lake

My lovely boyfriend had his wonderfully even 32^nd Birthday on Sunday July 25^th. Thursday we headed to his parents’ in Spokane with Mountain Bikes in tow for his Birthday bash weekend.

We arrived that evening at 6pm, went to teriyaki, and watched the rerun of the Tour from that morning.

It was a warm one! The weekend weather forecast was for the upper 90's, and luckily the wind was supposed to die down. We were scheduled to take a hot air balloon ride on Sunday.

Friday we woke up early... really early. I hadn't slept really at all that night and was in a fair amount of pain. Nothing in particular, just one of those nights that everything hurts and I just cant get comfortable. I always feel so bad tossing and turning at night, because even though Johnny says it doesn't bother him, I know it disrupts his sleep as well.

Having a blast with my best friend!

One of 10 tunnels

We headed out to the start of the Hiawatha Trail at 7:30am, stopping for coffee and breakfast along the way. The trail is 15 miles long that goes through 10 tunnels. One of which was almost 2 miles long and goes under the Montana/Idaho State line (A first! Setting foot in Montana!) It also goes over 7 really high railroad trestles. It was a slight downhill grade the entire way, and there was a shuttle at the bottom to take us back up to our car. Under, over, and through a state line.

One of the 7 railroad trestles

Saturday we slept in and Johnny took me on a motorcycle ride! (Another first!) I was a little nervous at first, but trusted Johnny completely. Plus, I though if we crashed at 40mph, it would be just like the guys crashing on their bicycles on the Tour. A little road rash, maybe a broken collar bone.... nothing big. But of course we arrived home unscathed and I had a great time.

Sunday we went to Lake Coeur d'Alene (a first) and enjoyed the wonderfully hot sunny weather. And that evening was the much anticipated hot air balloon ride.

Johnny and I

While looking for my sunglasses after our crash landing!

Up, up, and away!

What I realized from this weekend was that there are still plenty of fun exciting things to do out there that don't involve so much body power. You can still get that feeling of a small kine adrenaline rush of doing something new and unknown without killing yourself physically. The weekend left me happy and refreshed with life. Thanks Johnny, for your Birthday bash weekend!

Andy Ran and Won for FSH

2010-08-10T11:47:00.000-07:00

On the 28^th of July my friend Andy ran the 2010 Invest in Others 5K in Boston. And of course the speedy dude won 1^stplace! $1500 for FSH research! Thanks Andy! You Rock! Your celebratory BBQ coming soon…

That's one huge check!

Read more at http://www.prnewswire.com/news-releases/invest-in-others-charitable-foundation-donates-30000-to-pine-street-inn-through-second-annual-5k-runwalk-in-boston-99470529.html

2010-07-27T21:13:00.001-07:00

I will be attending the Biennial FSHD International Patient and Researcher Network Meeting in Las Vegas this weekend with Terry Colella from Friends of FSH. I am excited to get to talk to others with FSH and find out exactly what is going on out there in terms of research. Check back soon as I will be taking detailed notes with the attempt to relay any information to those who were unable to attend the conference.

Also, Andy is racing a 5K tomorrow in Boston in hopes of placing in the top 3 finishers. The top 3 will receive money to donate to their favorite charity and Andy has chosen Friends of FSH. Good luck Andy! Results posted soon!

Risk vs Reward.... Hiking the Napali Coast

2010-07-27T20:48:00.000-07:00

Coming soon......

Kalalau Trail - Na Pali Coast

With Johnny on the Napali Coast

Rapping on Life this Tuesday Morning

2010-04-27T11:29:00.000-07:00

Sometimes when I am feeling down I try and imagine how my life would be without FSH. Honestly I never get very far, because I can't. Having FSH has shaped my experiences and ultimately made me who I am today. Given the chance to go back in time I truly would not change a single thing. The path I have set out on has allowed me to come across the most incredible people and experiences. I have grown more than I ever thought possible and am always eager for an opportunity to grow and learn even more. The down and out feeling never lasts long.

Not only does this realization turn an inkling of a negative feeling around, it also serves as a reminder to live each day to it's fullest. A flashing green light with bells and sirens screaming at you to grasp every opportunity that comes your way. To challenge yourself physically, mentally, and emotionally and to "live" YOUR life. Having FSH has given me much more than it has taken away. It's a bold statement, I know. I didn't come to this belief easily either. Sure it has robbed me of valuable muscle mass that aids me in having an active lifestyle. But it doesn't rob me of any cognitive functioning, and instead has given me a huge gift in return. A unique insight on living. Life it to short to waste my muscle slaving away at a nine to five. I would much rather be wasting my muscle doing things that I want to do and experience life. No regrets.

A few months ago I was lucky to meet someone who shares the same views, and was again reminded of the wonderful path FSH has set me on. Not saying that I am still not hoping for a cure yesterday, but at the same time thankful that I am living and not just going through the motions.

With that being said I couldn't be more ecstatic about the $6.3 million dollar grant just awarded for FSH research. http://blog.fshfriends.org/

On a day to day basis I am always working to bring awareness to our form of muscular dystrophy. It is something that is very important to me and something that I hope to do more of in the future. Next week I am hoping to get the opportunity to do so and to give a larger voice to this "invisible" disease.

And on a final note, I was having breakfast yesterday morning with that wonderfully amazing person that came into my life a few months ago and realized that it was time to break new ground in a totally different area. I love my bicycle and will always be obsessed with it, but maybe adventure racing......? We will see what the future holds, but I'll only get there by living up today.

FIRST RACE OF THE SEASON

2010-02-20T21:15:00.000-08:00

Last weekend Andy and I raced our first duathlon in Rochester, which is about 30 minutes south of Oly. It's tiny, so I thought I would add it's location. It wasn't till 2pm so the torrential downpour had let up by then which was rad. And I'm not normally moving so well in the morning so I'm all about the later start time. Andy did his first mile in like 4:40 so I was the first person out on the bike. I think I finished in 11.5 miles in 38 minutes. They haven't put the results up yet (hence the small race). Which is ok for me this early in the season. I kept getting passed by these dudes with huge legs. Someday I'll have huge legs! I think the funniest part of the day was the one guy totally outfitted with his aero helmet and full disk in the rear. It was a pretty informal race and he just looked like he was tyring way to hard. Well to each their own I guess! We are going to do another next month. Which should be as fun as our mud filled Saturday! My fitness is continuing to improve after a slow start to the season. More to come later!

FSH 2010 Fundraising Auction Video

2010-02-01T07:32:00.001-08:00

By Elliot Bay Productions

Raising and Racing

2010-01-29T20:20:00.000-08:00

So tomorrow night is FiSHing for a Cure 2010 Caribbean Nights Gala. The goal is to raise money for FSH research and bring awareness to the disease. I agreed to be in the film this year. My message is pretty straight forward: The thing I love to do most (athletics) directly makes my condition worse. The one thing that keeps my soul alive, and if given the chance I would devote everything to, progress my weakness. And to hit it home... I am missing the part of my DNA that rebuilds muscle and makes me stronger and faster. What a contradiction.

To be honest I'm really not looking forward to seeing myself on a big screen in front of a ballroom of people. Filming was painless and it was fun working with the guys from Elliott Bay Productions. I'm excited to see how they put everyone's stories together. And again kind of anxious about my message coming across.....

On the athletic front my friend Andy and I are doing a duathlon in a few weeks. It's a sprint (1 mi run/11.5 mi bike/ 1 mi run).... needless to say Andy's doing the run. He is a state record breaker and putting the pressure on! We'll win hands down. : ) My legs are feeling really good and I'm super excited.

1 state record breaker + 1 cripple kid = a competitive age grouper......?

FSHD in the New Year

2010-01-11T11:05:00.000-08:00

I am not one for new years resolutions. I don't think you have to have a new number on the calendar to change your mindset or better yourself in any way. I believe setting goals, keeping a positive outlook, and continuing to grow as a person should happen year round. On the contrary I am excited for 2010 as something just feels different. Maybe it's all the news going on in the FSH world and the support of so many people pushing forward to make a change. All of these little steps are starting to add up and become larger movements. Just as Facioscapulohumeral muscular dystrophy has been recognized as the most prevalent form of muscular dystrophy our voice is growing. I feel like it's only going to get louder in 2010.

Fishing for a Cure 2010 Caribbean Nights Gala is coming up on January 30th. It's always refreshing to meet up with a large group of people who know what you are dealing with. The nature of this disease varies so greatly, and although it doesn't look like I have FSH (except to those who know what to look for) my shoulders and hands are shaking under gravity as I lift my hands to type this. Giving a voice and bringing awareness to this "invisible" disease is a great way to start 2010.

The increased difficulty and and pain of getting back to training this season is an issue I have had to dig deep into in order to come out with my glass half full. I will never be a pro athlete, but hey I can still ride a bicycle better than I can walk! : ) But in all seriousness I wanted to thank all the people who work so hard to put this event together. It means so much to me and so many others. Please help support FSH research in 2010 and lets be obnoxiously loud this year!

Seattle to Portland Bicycle Classic

2009-08-12T16:13:00.000-07:00

I rode the Seattle to Portland Bicycle Classic on July 11&12, 2009 in order to raise money for FSH research. The overwhelming support of donations was incredible. Thanks to Marimichael and Melissa for donating their STP registrations to auction off. They raised a little over $300. As well as my Grandma who brought in a lot of cash donations. And to everyone who donaited online... Thank you!! It was encouraging to see that there are many people who are pulling for a cure for this form of muscular dystrophy. It affects so many peoples lives and as more people work together it will help to move us toward finding a cure.

My Mom and I went up to Seattle the night before. We stayed at a Lake Union hotel that was only about 15 minutes from the start line. We arrived around 3 in the afternoon so we could bum around and get an early dinner. Our hopes of an early dinner diminished after spending about an hour trying to get to the Columbia store. I wanted to enter to win a bicycle that they were giving away in conjunction with the Tour (de France). Which on a side note held my attention for 3 hours a day for 3 weeks. Well anyway, Seattle traffic sucks. Living in Honolulu for 5 years I often complained that things were all just backward. But traffic actually moves through downtown Honolulu! So we finally made it to the Spaghetti Factory for dinner and were back to the hotel at 7:30. Surprisingly I didn't have a very hard time going to sleep. I was really stoked to get to go ride on roads I have never ridden before!

The next morning I woke up at 4:45 and planned to leave to the start (University of Washington) at 5:15 for a estimated start time of 6:30. My Mom wasn't sure I why we were going to leave so early if I wasn't planning on starting till 6:30 and the hotel was only 15 minutes away. After I explained that 9,000 people were going to be trying to get to the same parking lot, it made a little more sense to her.

Sure enough we crept to the start line with all the other cars with bikes strapped to them. After finally arriving and unloading my bike, Rick and Terry Colella arrived. They are the founders of Friends of FSH (www.fshfriends.org). The non profit I raised money for by riding the STP. They are doing great things by funding research for FSH and I was glad I could help out a little. Jason was also at the start. An avid hiker he also continues to be active despite a diagnosis. It was great to have such great support! Thanks guys!

The first part of the ride was beautiful! It was along lake Washington with Mt. Rainer in the background. It was quiet and cool and the morning light made things dreamlike. It was a good time to reflect on what I was actually doing. I was diagnosed with FSH when I was 17, and doctors told me to quit all athletics and find a desk job. Yet here I was about to ride 200 miles on my bicycle.

My first scheduled stop was at a McDonald's in Renton. My Mom met me there so I could fill up my water bottles and get something to eat. I was feeling really good at this point. I had been on the road for about 2 hours and had tried to down the 2 bottles I had. I knew that nutrition was going to be key. I knew if I didn't drink before I was thirsty or eat before I felt hungry I was going to be in trouble. This is important for any athlete, but something I am constantly thinking about, due to the potential of permanent muscle loss. I only stayed 15 minutes as I was trying to minimize the amount of time I was hanging out at rest stops thus minimizing the total time I was out for the day.

My next stop was outside of Puallyup, after "the big hill." Which I was slightly concerned about because I'm not a climber. It was described at a mile long climb with 7% grade. All of my training is based on efficiency. Because I am somewhat limited on the amount of power and strength I can produce, I focus all my training on efficiency and keeping a high cadence while peddling. The "hill" was nothing to worry about. I have climbed much steeper and longer hills and absolutely didn't need the triple I was contemplating putting on my bike. I felt warmed up after the climb and ready to go. Which showed me that I had been successful in my training. The icing on the cake was passing a very fit guy walking his Tarmac up the hill. This is still cracking me up. So I ended up missing the spot I was supposed to meet my Mom. Have I mentioned that she is the best soigneur ever!! I ended up stopping at a Safeway with a bunch of other riders. My Mom found me after a few minutes. I tried to get some solid food down, but I wasn't very successful. I figured that as long as I was sticking with a bottle an hour I was good. I mix each bottle with Infinite. My bottle ends up being 220 calories and as long as I'm drinking, have never had a problem during a race.

The next stop was going to be Yelm, which was about 25 more miles. It was pretty much a straight shot. This leg of the ride I was able to get in and work with a group of riders and made it to Yelm in the fastest leg of the day. My Mom would always stop about a mile after the large organized stops. It worked out well for the major reason I never had to stand in line to go to the bathroom. As I passed the Yelm stop there were multiple emergency vehicles. Someone must have not fueled properly. It's a scary thing. I witnessed many people who collapsed in an XTERRA race I did last year. It was 108 that day. They were all men...... : )

Leaving Yelm was really hard. My final leg of the day was Yelm to Centralia. Shortly after I rolled out of my last stop we turned onto the Challis Western Trail. It was somewhat comforting being in an area that I train in on a regular basis. About 10 miles down the trail I hit the intersection that continues onto Tenino or branches off toward Lacey. So close to my house at this point! But I kept going straight. Soon after the intersection their was a slight downhill and then a wooden bridge with a chain link fence that ran along both sides. Out in front all of a sudden I saw bikes in the air and people slamming into the fence. I was actually amazed that this was the first crash I witnessed. The volume of riders on the road was like nothing I had ever seen before. So I made my way through the carnage and continued on the Tenino. I wasn't planning of stopping in Tenino, but the last 10 miles were very hot and I wasn't feeling so hot. My Mom met me there and I sat in the air conditioned car for close to 30 minutes. After rehydrating and cooling off I was headed to Centralia.

These 12 miles or so were the longest 12 miles I have ever rode. And it probably took me twice as long as I had been averaging each 25 mile leg! Along the way I ran a cross a sign that said "way to go Kalynn Dibble." I was really tired at this point and did a double take. That is my name! My massage therapist and her family had set it up for me. She by the way she is a miracle worker and almost has my shoulder looking somewhat normal. Finally after 100 miles I hit Centralia! This had been the longest distance I have ridden so far. I loaded my bike into the car and my Mom and I went to stay in Longview for the night. I thought that maybe I would be able to make it the 150 miles to Longview the first day, but I was having trouble shifting gears at this point.

The next morning was kind of hard to get going. Ok really hard to get going! But I know my body really well and how far I can push it, and knew that I was ok. My Mom dropped me back off in Centralia. My legs actually felt fine, but just being on the bike hurt. Because of my weaker core more weight than it should rests on the handle bars and it was not feeling super hot.

I stopped in Vader, which was about 27 miles from Centralia. It took me a while. Again not really because of my legs. My hands were killing me. It was much much cooler the second day, which was nice. Although there were thunder storms to deal with. By the time I make it to the 150 mile mark and the Lewis and Clark Bridge I was starting to get that feeling of hitting the point of no return. It's hard to explain, but meticulously training and logging has taught me what my limits are and I am able to stop before I surpass them. I'm not going to lie, the Lewis and Clark Bridge looked ominous. It was steep and high and they were stopping a few hundred riders at a time and police escorting them over the bridge. So I decided at that point to pull the plug on the day. Not regrettably though. I had made it 150 miles without putting myself in a hole and doing irreversible damage (we'll none that I could tell anyway). My training had been successful. I had ridden the farthest distance to date and also raised $3,300 for FSH research. I felt pretty good about the whole thing. Next year with a little more training I will be able to make that last 50 miles.

Finally starting to feel strong on the bike

2009-05-28T00:45:00.000-07:00

Whoa, so I have been slacking on this. I have been pretty much just trying to keep my head above water. I have been pretty trashed after working and then on my 3 or 4 days off have been spent recovering. I just start feeling good again and then it’s back to work. So training was fit in there somewhere, but it wasn’t quality. By some miracle, the last three weeks, my training has been amazing. I mean my legs have felt better and stronger than they have ever felt. My work schedule has slowed down and I have done a few 4 hour rides with at least 2 hour rides in between. It’s not so good on the paycheck, but that’s not the priority right now. I can grow up later. For now I’m going to ride my bicycle.

Up until today I was totally freaked out about riding the 200 mile STP. Today during my ride I decided that I was going to be able to do it without a problem. My legs felt awesome. And better yet I’m doing the highest volume I have ever done. Now that things are going a little more smoothly I can focus on fundraising efforts.

So I didn’t finish writing about the FSH auction because it was kind of a hard time for me. Not the auction itself, but just a hard time in general. The weather was killing me. It was my first winter back in Washington in 6 years. It is so dark! Also, I was kind of dwelling on my disability. This doesn’t happen very often, and if it does I don’t normally talk about it. I always try and keep a positive spin on things. But it happens sometimes and I guess I write this blog so people can relate….. So I guess I will break my rule of not talking about it. But long story short, the auction came at a good time and I came out the other side much better.

Life is good.

Fishing for a Cure Auction

2009-02-24T08:55:00.000-08:00

Ok, so I have been really busy with work and trying to fit training in when I can, so I haven't had the chance to write about the FSH fundraiser that the Colella family puts on every year. It came at a good time for me and enjoyed hanging out with everyone. I will go into detail later today. Just wanted to put this up so that I would get it done.

Riding the STP for FSH reserch

2009-01-04T17:03:00.000-08:00

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.

No one ever says I want to grow up and be in the Paralympics....

2008-12-09T17:59:00.000-08:00

I have a good friend of mine who says, "No one ever dreams of growing up and competing in the Paralympics." This is not meant to be 'glass half empty' spiel. It is simply that. As a kid you dream of becoming an Olympic athlete. The paralympics is amazing at that. It gives us something extremely challenging to strive for, but I think below the surface of the hardworking, 'glass half full' exterior our hearts break because the Olympic dream is out of reach.

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.

Bitter Sweet

2008-10-26T19:00:00.001-07:00

Most of my afternoon was spent watching XTERRA Worlds in Maui. For those of you who don't know, I embarked viciously on the road to XTERRA starting last October after realizing that muscular dystrophy was not going to take my competitive spirit. It's crazy to look back at the fact that I have only been on a bike and swimming for a year. My heart was after Maui and unfortunately due to a few different circumstances I was unable to make it there this year. It has been so great meeting other athletes that have not let their circumstances prevent them from being active and competing. Doctors told me to quit athletics and take part in gentle physical activity. Well there is nothing gentle about XTERRA. Megan Fisher was the first female "challenged" athlete to complete Worlds today. It is great that she is paving the way and I can only hope that she will have some good competition in the future! Also, congratulations to David Kyle, Andy May, and Ryan Moulton!

First Group Ride

2008-10-06T18:10:00.000-07:00

So I went on my first group ride on Saturday. It was with the Valley Athletic Club/CBC team. Everyone was very nice and helpful. I had a great time despite the torrential downpour....which made things a bit more challenging for me. I feel like I did pretty well, but I'm pretty sure it was a very, very easy ride for most of them. I rented an all carbon bike for the ride. Matt had been letting me use his Allez in San Diego and I haven't purchased my own bike yet. But after riding the much lighter bike, I am now planing to spend way more than originally planned on a bicycle. I am really excited about it. Hoping to have the funds secured so I can get one at B&L while I'm down visiting Matt this coming weekend. I might even race in the TT at Fiesta Island while I'm there. I am absolutely no good at this cycle thing, but I'm having a blast and look forward to learning a lot from the girls on the team.

My ONE and ONLY rant for the winter

2008-09-20T18:02:00.000-07:00

So I was pretty bummed today. It is really...and I mean really....dark and gloomy. I was also not very stoked on riding my mountain bike with slicks on the road. After spending the summer in sunny San Diego riding a road bike....this was quite the opposite. So I am going to use this post to bitch, put things in perspective, and move on.

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!

Inspired by this crazy little town...

2008-09-16T17:45:00.000-07:00

So I have been back in Olympia for 4 days. I have come to the conclusion that this town makes me smile. But really, it's just an easy going place that the weirdest shit happens. Lol.... so I thought that this time around I would document it for pure entertainment purposes. It also doesn't help that training through the winter here gets a little lonely and boring. So it will give me something to do. And if this winter is anything like last winter...stay tuned for what might become the script to a horror movie....