It's been awhile since I have been on here and yet I have so much to say. It's been a very long month and I'm pretty tired...but we are nearing the finish line. I've been managing multiple social forums and trying my very hardest to g et the word out. I so want to meet our 20K goal. Currently, we are at $15, 362 raised. I've mentioned Bike for Kam on here a couple times. A 500 mile bike ride from San Francisco to Los Angeles to raise funds and awareness for my rare condition. The fact that I don't need to progress, because treatment could be in the near future is something that lingers in my friend's mind. I've nearly lost my legs and they don't want this to happen to my arms and hands. So they are riding cross country for me.
Currently the guys are on Day FOUR of the tour and nearly half way home. I've been busy with our bikeforkam.com website maintaining as well as logging their day to day trip in an online journal. Every day they text me a few pictures and at night I talk to them for a few min as they quickly convey the day they just had. I then try to recap the ramble into a cohesive daily journal. I thought I would post all of it here, too :). Below is copied updates from Bike for Kam website.
If you are a reader of mine please consider DONATING to our project and encouraging your friends to do the same. I would love nothing more than to reach our goal and support all the team's hard work. It would be very encouraging to us. It has been a heck of alot of work.
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DAY ONE (AND THE MOMENTS LEADING UP TO DEPARTURE)
Continue Reading their Day ONE, TWO and THREE stories...
It’s Friday, April 22, 2011 and I’m prepping for the boys arrival in San Francisco. Some are driving in today, some are flying in and taking the train tomorrow and others are flying in on Sunday. Tomorrow I’m making them a big team dinner and so I’ve been cooking all day. You might wonder how I am able to cook with a disability. It’s alot of work and takes alot of planning and thinking ahead. I love to cook and as the condition has progressed it takes me longer and forced to spread the load over a larger gap of time. So, what I used to be able to cook in a day may now take me two days to complete. I still do it, because I love it and it means alot to me that I still can do it. I’m hanging onto these things that I love to do…Hanging on with everything that I have. When you can’t do things you spend alot of time thinking of creative ways to do it anyways. I can’t ride a bike or join my friends on this adventure, and while the adventurer in me would love to join, I can’t. So, I designed a “lil kam” doll to go with them in my place. I’m sewed Kam doll today and though it was my first time every sewing and my hands and fingers were weak and shaky, I finished her! Because my HIBM is now starting to spread through my arms, hands and finger I’m losing muscle in forearms which makes dexterity difficult. Opening pens or grasping small objects, such as a sewing needle, is difficult. Doesn’t mean I can’t still do these most things – it just means I have to work that much harder to do things like I used to.
Anyways, it was really fun creating my first little doll and she is now ready for adventure.
I haven't posted here in awhile but so much has been happening. Ill be back soon--meanwhile visit www.bikeforkam to see what I've been up to.
Bike for Kam 500 mile trek has begun,
My friends are biking up a mountain right now and I'm stuck on the toilet trying to get up...I'm resting and will give it another go in just a minute here...
Couple days ago I finished drawing out these tshirts. Front and back version...a bike coming and going. A company is screen printing out the team's shirts, but I wanted to make them available if anyone else wanted to buy and wear them the week of the ride. So, if you are interested you can get them on cafepress.com. I've never used this website and these are my first t-shirts I've sold online.
I think I may start designing some other shirts, though I really hate how much of the profits cafepress gets. Smart company.
Here's the link to buy. I didn't really mark them up for profit, because I wanted people to actually buy them. So, $2 commission sales on all shirts goes directly to ‘Bike for Kam’ fundraising project.
Other than that I have alot to say, but not feeling particularly eloquent right now. Not that I usually am, but for this one I'll just be spouting out facts.
A week ago I turned 32. I decided to celebrate getting younger by going skydiving! It's been something I've always wanted to do, but my fear of heights slowed down me pulling the trigger. Well, if you want to do something you should do it today, and so I figured, why not? Today is as good of a day as any. Two weeks before my birthday I decided to do it and started calling around at different skydiving facilities. There is a little more prep work for someone like me. I need to make sure they can handle and accommodate someone with physical impairments. I'm a researcher. It's my nature. I like to look for the best deals combined with best service or quality. I read about Norcal skydiving and they had the best rates and also the best reviews. I was most attracted to their reviews in how funny and cool the Norcal guys are. "Hey, I like funny...this place could be for me"
Surprisingly, I didn't obsess over the upcoming event and wasn't too scared...until I got onto the plane, that is. For the weekend of my birthday we went to the wine country...rested, ate some good food and then I flew with the birdies. Definitely one of my better birthdays as I'm usually not into big celebrations or spending alot of money on an event for myself.
We arrived at Cloverdale airport at 10 in the morning. I was pretty tired, because I only had 2 hours of sleep the night prior an we had to wake up early to make it to the port that was an hour from us. Good thing we didn't go too crazy with the wine on Saturday. Anyways, we get there and then it became real. We hung out in the hanger with the staff-- a bunch of really cool guys who love extreme things. I rolled up waiting for my next turn and Greg, my tandem, came out pointing at me saying,
"You're next" while tending to his next victim. Hmm, I like him already. We hung out for awhile, got my gear on and waited while watching the others come in for landing.
"Hmmm, looks easy enough. Almost graceful and serene how they land."
Then it was my turn. Mark, my camera man, and Greg, my tandem escorted me to my little plane. They had to tie my feet up so Greg could have full control of my legs during the dive, and then...and then there was no turning back. The plane ride up was about 20 minutes. I started getting nervous when the plane took off and I could hear the loud clattering of the metal bird. I think Greg and Mark could tell I was getting nervous, so were very supportive and wonderful about it all. It wasn't just about the jump, though. I started thinking about everything and the last 32 years of my life...and how I got from point A to B...and how really this is the least scary thing I have to face in my life. I told Greg and Mark about my condition with a slightly teary voice and then I got quiet. All of a sudden the girl that wouldn't stop talking or making jokes had nothing to say on the airplane. It was a quiet and contemplative ride up. I had nothing to worry about with the jump, because I trusted the guys and they were just so sweet.
But, then the doors flung open and Mark instructed me to look to the right at the camera, smile and then turn my head to the left for the jump. Yea, right. I had no thoughts about smiling to the camera. My legs were hanging off the edge of the plane and I looked down at the world beneath me and thought "Oh Shit!". Greg did his count, "1,2,3" ....ahhhhhhhh. He jumped and the whole world was spinning around me. I had no idea where I was as everything looked the same around me. The wind was intense and I couldn't even see Mark. I think my goggles were super tight, too. Greg tapped my shoulders as cue to lift my arms like a bird. I couldn't believe it....I was flying in the sky.
Free falling was about a minute and the parachute ride down was about 5 min. The skies were so clear that we could see the Sierra Mountains, which were 7 hours from where we were. It was beautiful and amazing. Cold and fresh, yet warm. I saw my feet dangling over the land below me. I was imagining my straps coming loose from Greg, and that I would fall straight down...and imagining what I would do if that happened. "Stop, tuck and roll?"
Suddenly it was time for landing...which was sooo fun. Greg swept his legs under my binded legs and landed for me. I was watching as the Norcal guys were scattering about beneath me making sure they would be positioned exactly where we would land. I remembered thinking it was funny looking...couple dots running around in the field trying to catch us. As soon as we landed it seemed like it went by too fast, and the guys immediately unfastened me and carried me to my chariot.
It was a great experience, a great way to turn 32 and I'm not opposed to trying it again ;). Afterwards, I was soooo tired. My body, my eyes, my legs hurt, so we found a field to lay down in, and take a nap under a perfectly blue sky among the stillness of the world I just dived straight towards to. It's nice getting younger as you're getting older. The hardest part is letting go...
Having a disability is really difficult and many times I have to do more just to live like everyone else, but not LIVING is even harder.
I did this one pretty quickly. Kind of just wanted an image to go with this post, but unfortunately these days don't have time to illustrate. I have an itch, though. I really want to hop back on and do more since I have a ton of ideas backlogged in my head.
This post I actually wrote it Monday in the middle of the night. I post notes in my phone when I think of something. Sometimes they don't always make it on here, but I jot them down anyways. I have to type them, because these days writing for any long stretches of time are difficult on my little fingers. The other day I was filling out a form...what was that for?...hmmm, Oh, right I was filling out the skydiving forms before I took my plunge. Pretty much signing my life away in case I died while jumping out of a perfectly good airplane. But, my fingers were so weak it was hard making it through those forms.
Journal Post, Monday, April 4, 2011 / Time: all night
Jason and I were up pretty late. I watched him hunched over his computer sending out personal emails to fellow blog artists, friends and family requesting their help in pushing Bike for Kam around. He was frustrated. I was frustrated. Now, Jason isn't the type to get worked up about too many things....wait, scratch that...he does about some things. Luckily, we seem to balance out those moments. When I'm a mess he is usually the rational one. When he's a mess it is I that comes to the rescue. He gets overwhelmed with multi tasking, prioritizing or things that seem to big to handle, and I get overwhelmed with emotions and my desire for big dream schemes.
But, he was clearly frustrated. He was hoping for responses to his sincere personal requests in helping to repost or network. After all, we are just a team of two. My bike riding friends are just a team of 4. We need more team members. It's hard doing it alone. Some of my friends are frustrated, too, mostly because they are not as familiar with this nonprofit world or PR and marketing and probably expected a greater response.
"I deal with this all the time", I say "...don't worry". But really, I'm worried. Of course, I want it to do well.
How do you get people to care or to understand the urgency? Is there a magic strategy? Some things you can put off, but a debilitating condition you cannot. Posting something once doesn't do it. Rather it is a 24/7 endeavor for someone such as myself and sometimes the rewards don't seem to fulfill all the time and emotion that was put into creating something such as this Bike for Kam project.
It's been really busy. Networking and PR can really take it out of ya. Two nights ago I had a pretty bad night. Feeling alone and hoping to see involvement. I didn't slept all night. Feeling better now, though incredibly tired. Not just from all the work for the bike project, but I have other projects I'm juggling, too. I'm also oddly still sick. I had the flu for 2 weeks, 4 weeks ago and since I've still been pretty sick. Cold, allergies...mmmm, not sure. I'll post my thoughts from 2 nights ago just because it's probably important to share those really down moments. I have them from time to time. Absolutely.
Now, for the good news. Meredith Skrzypczak, Editor from Rancho Palos Verdes, CA Patch, has just written our very first article. Cool!
“A rare disease has a former L.A. resident fighting back as she starts “Bike for Kam,” a grassroots project culminating in a 500-mile bike ride.”
“What you are before you become disabled … you’re still that same person,” she said. “I’m still the same person. … I still care about living life, if anything more.”
I just woke up. My body feels like it was hit by a tank and I am incredibly tired. It's 1 'oclock in the afternoon :/. Yikes, I never sleep late. Everything hurts, my ears are ringing, my head is hurting, my teeth and my eyes are sore. I am trying to pull myself together, because an editor from Patch, paper from Palos Verdes, is doing a phone interview with me on the project bikeforkam.com. A friend asked his friend to help, and this is the result. You see? have to keep talking about it and asking around, because you never know what will happen.
Here is a sneak peek pic from yesterday where I dived in Cloverdale, Ca with Norcal Sjydiving. Awesome group of guys. When I have a chance I will post a video and the story. I think I am tired from, well the dive and a busy weekend, but have been barely sleeping in general. Like ground meat, and not the organic kind. I've been waking up every hour. Saturday, before the jump, I had like 2 hours of sleep and during the week wasn't much better. But, not last night. I slept like a dead person and had some really epic dreams. I sometimes forget the way, and the amount, I work and the things I do would make any "regular" person tired. But, it was worth it. My birthday weekend was probably the best I have had in years. Usually I don't like to make a big fuss about myself and practical when it comes to spending money on things, such as my birthday. But, it was good. Take those moments.
Anyways, need to push myself back into all the work that is awaiting me. I didn't have a chance to do alot of PR work over the weekend, because I was out of town. I did keep checking the site and saw we had 500 visitors and maybe 15 or so donators. I try not to get discouraged. After all, it's only been 3 days and I know it requires alot of work on my behalf, as well as the team, friends, colleagues, family...etc. to get it out there. Lots of work ahead. Cheers!
Well, I skydived for the first time and didn't faint or hurt any bones. It was crazy...different than I imagined. I'm getting old, though because I'm so exhausted. Pulled off in a winery field and taking a nap under a perfectly blue sky. The weather and scenery is simply gorgeous.
Talk to you soon.
Here's a short post. I'm feeling better today. I feel released from alot of work I've been tied down with lately. Yesterday was pretty bad. We launched the project and I was so tired. My arms and fingers were so tired, and each shoulder felt like they had ten pound weights on them. It gets scary on days like those. The recognition of a new weakness luring around. I cried for most of the day...for more reasons than one. Tired from working all night to launch, tired from all the content I had to write about, tired from being so wrapped in hibm, feeling odd from being so exposed, even though I've done this so many times before. I guess I don't want people to feel sorry for me. It's a silly feeling, I know, but a feeling is a feeling. It's not always logical.
Anyways, it was a pretty bad day. It was a bad time and a very bad sob session that lasted for hours and hours. I had no problem letting it all out. It's hard imagining not having use of my arms....
But, I got some rest and today is beautiful as I'm hopping the wineries. Had a good meal. Drinking some good wine and coasting through nature. There are those really bad days and it's about hanging in there so you can reach the good days. I feel relaxed and ready to tackle my next load of tasks....and ready to skydive as a way of bringing 32 years of age.
We finally launched!! This will be a very brief post as I'm simply exhausted. This week has been 24/7 bike project. Built the website and my new friend, Steve...I don't even want to know how many hours...weeks...he spent on this video. Do it justice and at least watch it as it is only 2 min and 30 sec. If you want to know who steve is, you best visit our website ;)
Emotionally and physically exhausting--I was up nearly all night. Unintentionally. It just happened. This stuff takes so much time. Plus, talking and writing about your ailing condition can be taxing. So, I need a break and hopefully you can help tired ol' me out. Poor steve was emailing me at 3am from Los Angeles :/.
As soon as I hit the launch button and sent our PR outline out to the team I just cried. I was alone. I'm sure it comes in part, because I am deeply tired, but also because I feel so exposed. I should be an expert at this, right? After all I talk about it all the time...but it is still hard. And, I get fearful that my arms are going to weaken to nothing soon. I can feel it my fingers and shoulders...Sometimes I'm scared...
I think I am going to take a break this weekend. I'm so tired. It is my birthday this weekend and I am supposed to be going away to bask in a winery and then go skydiving, but I don't feel mentally prepared for it all. What? Who knew you had to be mentally prepared for a vacation? That's how mentally exhausted I am. I feel like, "Oh yea, I have to go skydiving this weekend". Like it is an item on the list :/. Kinda wanted to enjoy the moment. Oh well, I am sure I will be fine once I get there.
I hope this project will go well and I really really encourage you, whoever you are, to stretch yourself and move this project around your circle. It's important. Alot of hard work and dedication has been wrapped up in this and it is just the beginning. More work and more fun to come.
I need your help! This is a viral project and we will get absolutely no where if you don't chip in. All it takes is your fingers tapping on that keyboard or bringing it up in a conversation with a friend...or hey, even a stranger. Reach out to at least one person a day and forward them to us.
Have a good weekend all! I may just come back with a video of me skydiving :O.
What? How can you help you say? Thanks for asking. Well first, visit our website at: www.bikeforkam.com
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