Ride for PKD

About the Ride

Adventure of a Lifetime!

I set out on this adventure to ride the Pacific Coast Highway to have fun and see what I was made of. My goal was to do the entire route from Seattle to San Diego in 26 days. I ended up riding 21 of the 24 days I was scheduled to ride-a total of 1331 miles. I climbed up many headlands along the way-one of them being a 7% grade for 3 miles-950 ft. It was a very difficult journey, but fun as well. I accomplished a lot and even though I chose not to ride a section of the route, I learned that I can be happy with what I did accomplish and learn about myself in the process. So I ask you, to what end do we accomplish our goals? It's not enough to get to the end of the road without enjoying the ride and learning along the way. It is a process. To what end do we set out on the adventure of life? To say we did it, or to tell others about the experience of it? It is in the telling of it that it becomes meaningful-to share with others to that they may be inspired to dream about their own adventures-to have their own experiences to share. Some of the high points on the road for me were: cresting a hill after a big climb and high-fiving my friend at the top, racing down a hairy decent on the other side, going 24 mph with the wind at my back pedaling effortlessly, the thrill of roller-coaster hills, and a nice hot shower and a cold beer at the end of a hard ride. Some of the challenges were: crosswinds that threaten to knock you off your bike and push you into traffic, crossing scary bridges, having to change clothes several times a day due to weather fluctuations, and navigating. I learned about fear and courage and the kindness of strangers. With PKD, we deal with fear of the unknown. We don't know what lies ahead on the road to the future, yet we must press on. We must have courage to face the unknowns and the wisdom to ask for help. We must accept help with a gracious attitude and know that the kindness of strangers is out there in abundance-we just have to ask. I learned about perspective. When you set out to accomplish a goal and are disappointed by setbacks, you must remember to keep your perspective. The road can be arduous and setbacks are inevitable. Honor the road that you are on and learn from your setbacks. Respect your limits and work to stretch yourself a little more next time. Remember your struggles and honor the struggles of others. Respect your experiences and the experiences of others. The road of life is long and each person's experience of it is different. I learned about failure. Failure is not an option with PKD. If we fail, we no longer are participating in life. To fail does not mean falling short on your accomplishments. Failure is simply to give up striving for excellence in ourselves. When we fail to participate in life, we fail ourselves. When we face a fork in the road, we must choose our way. We must take time to regroup in order to press on toward success. These are some of te lessons I learned on the road that I want to pass on to you all: Challenges are best experienced with a friend, don't leave your partner behind, don't bite off more than you can chew, take rest when you need it, reach out for help, when all else fails cry and pray, when you miscalculate the distance revert to plan B, plan for the worst and hope for the best, and when a bird poops on you wash your clothes and move on!

About PKD

About PKD

Polycystic Kidney Disease (PKD) is one of the most common, life-threatening genetic diseases, affecting more people than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia - combined. More than 600,000 Americans and 12.5 million people worldwide battle Polycystic Kidney Disease (PKD) every day.

PKD equally affects men, women and children - regardless of age, race, geography or ethnic origin. It does not skip a generation. There is no treatment or cure for PKD. Until one is found, PKD will threaten the lives of every generation of every family living with the disease.

Those who inherit PKD develop fluid-filled cysts in both kidneys. Over time, these cysts grow and multiply, causing the kidney to increase sometimes dramatically in size. Although a normal kidney is roughly the size of a human fist, PKD kidneys can grow to be the size of a football or larger and weigh as much as 38 pounds each. More than 60 percent of people with PKD will develop kidney failure and be forced to depend on dialysis or a transplant to live.

About the PKD Foundation

About the PKD Foundation

The PKD Foundation does its work on the grassroots level primarily through the dedication of volunteers at the various Chapter locations throughout the country.

The Vision of the PKD Foundation is that "No one suffers the full effects of Polycystic Kidney Disease."

The Mission of the PKD Foundation is to "Promote programs of research, advocacy, education, support and awareness in order to discover treatments and a cure for Polycystic Kidney Disease and improve the lives of all it affects."

Charity Navigator, America's largest evaluator of non-profit organizations recently gave the PKD Foundation its 4-Star (highest) rating for efficiency. They wrote, "Only 12% of the charities we rate have received at least 3 consecutive 4-Star evaluations, indicating that the PKD Foundation executes its mission in a fiscally-responsible way, and outperforms most other charities in America. This "exceptional" designation from Charity Navigator differentiates the PKD Foundation from its peers and demonstrates to the public it is worth their trust."

In FY 2008/09, 80% of PKD Foundation fundraising dollars went toward expenses invested in mission-related programs-52% to research grants and programs, 28% to patient education and awareness, 11% to fundraising efforts, and 9% to administration.

Keep the mission going forward and donate to Ride For PKD on my fundraising website at http://www.pkdcure.org/rideforpkd

For more information on PKD and the PKD Foundation visit their website at pkdcure.org/

Wednesday, September 15, 2010

Senator Bob Bennett (R-Utah) Speaks about PKD on Senate Floor Today

Senator Bob Bennett speaks today on the Senate Floor about his family's personal struggle with PKD in support of National PKD Awareness Week Resolution passed recently by the Senate.

Watch his testimony on youtube at http://www.youtube.com/watch?v=eNUnC0Ccn0o

PKD Awareness Week

September 13th marks the start of National PKD Awareness Week in the U.S. Senate. Visit the interactive website and learn more about PKD at http://www.pkdcure.org/aware

Experience what it's like to have PKD through this fun interactive website at http://www.experiencepkd.org/

Thursday, August 12, 2010

Day 27 August 6, 2010: San Diego PKD National Convention

Jim and I rode along Sunset Cliffs Blvd. to see the rock formations before making our way down Catalina Blvd to Cabrillo National Park and Monument. The tide pools and cliffs of Point Loma are one of my favorite places! I lived for a short time in Yuma, AZ and when I would tire of not seeing water for so long, I would drive to San Diego and Point Loma just to sit by the water all day. I had a favorite rock I would lay on to feel the surf pounding in. I looked for my favorite rock, but alas, it was no longer there!! These cliffs are made of sandstone, which easily wears away in the pounding surf. The place had changed so much and there were many new nooks and crannies and tidepools to explore!! We spent all morning and most of the afternoon there!!

After exploring, we rode our bikes to the San Diego Hotel and Marina for the PKD National Convention where I was received by many people cheering. A little girl asked, "Is your favorite color black?" (Probably because that's what I was wearing). I told her it was green, so she drew me 2 pictures!! I guess I made quite an impression on her! I gave a motivational speech which was followed by a round of applause! I was able to talk to many people that night about my ride! Awesome!! I will repeat my speech here:

Adventure of a Lifetime:
I set out on this adventure to ride the Pacific Coast Highway to have fun and to see what I was made of. My goal was to do the entire route from Seattle to San Diego in 26 days. I ended up riding 21 of the 24 days I was scheduled to ride-a total of 1331 miles. I climbed up many headlands along the way-one of them being a 7% grade for 3 miles-950 ft. It was a very difficult journey, but fun as well. I accomplished a lot and even though I chose not to ride a section of the route, I learned that I can be happy with what I did accomplish and learn about myself in the process. So I ask you, to what end do we accomplish our goals? It's not enough to get to the end of the road without enjoying the ride and learning along the way. It is a process. To what end do we set out on the adventure of life? To say that we did it, or to tell others about the experience of it? It is in the telling of it that it becomes meaningful-to share with others so that they may be inspired to dream about their own adventures-to have their own experiences to share. Some of the high points on the road for me were: cresting a hill after a big climb and high-fiving my friend at the top, racing down a hairy decent on the other side, going 24 mph with the wind at my back pedaling effortlessly, the thrill of roller-coaster hills, and a nice hot shower and a cold beer at the end of a hard ride. Some of the challenges were: crosswinds that threaten to knock you off your bike and push you into traffic, crossing scary bridges, having to change clothes several times a day due to weather fluctuations, and navigating. I learned about fear and courage and the kindness of strangers. With PKD, we deal with fear of the unknown. We don't know what lies ahead on the road to the future, yet we must press on. We must have courage to face the unknowns and the wisdom to ask for help. We must accept help with a gracious attitude and know that the kindness of strangers is out there in abundance-we just have to ask. I learned about perspective. When you set out to accomplish a goal and are disappointed by setbacks, you must remember to keep your perspective. The road can be arduous and setbacks are inevitable. Honor the road that you are on and learn from your setbacks. Respect your limits and work to stretch yourself a little more next time. Remember your struggles and honor the struggles of others. Respect your experiences and the experiences of others. The road of life is long and each person's experience of it is different. I learned about failure. Failure is not an option with PKD. If we fail, we no longer are participating in life. To fail does not mean falling short on your accomplishments. Failure is simply to give up striving for excellence in ourselves. When we fail to participate in life, we fail ourselves. When we face a fork in the road, we much choose our way. We must take time to regroup in order to press on toward success. These are some of the lessons I learned on the road that I want to pass on to you all: Challenges are best experienced with a friend, don't leave your partner behind, don't bite off more than you can chew, take rest when you need it, reach out for help, when all else fails cry and pray, when you miscalculate the distance revert to plan B, plan for the worst and hope for the best, and when a bird poops on you wash your clothes and move on.

Thank you!!

Day 26 August 5, 2010: Oceanside to Point Loma, San Diego 42 miles

Left Oceanside at 10:30am and rode through another series of bike paths, roads, and heavily traveled arterials. When we got close to San Diego, we rode through Mission Beach, following the bike path then a series of alleys (to get away from all the people on the bike path), then finally to Point Loma and our hostel.

This hostel is plush!! They have those memory foam mattresses!! Jim said that was the best sleep he had gotten in a very long time. I would have to agree!! The staff were also very nice and accommodating!! We had to lock up our bikes outside, but we only had a cable lock, so one staff let us borrow his motorcycle chain lock!! Nice!! Dinner was furnished at the hostel which was BBQ for $5!! Can't beat that!

At the hostel, we met a guy from Austrailia who was also cycling the Pacific Coast Route. He started in Vancouver, Canada and intended on going to Tijuana tomorrow morning. We talked about bikes and cycling and compared stories of our travels through Oregon and California.

Planning to visit Point Loma natural area and Cabrillo National Park tomorrow before the start of the PKD Conference.

Day 25 August 4, 2010: Catalina to Oceanside 30 miles

The Casino at Sunset

Left Catalina Island on the boat at 11:50. Nice ride on the boat back to the mainland at Dana Point, which had a very nice harbor area. We left Dana Point at 2:00. The terrain was flat and FAST!! We flew to Camp Pendleton, went through the gate and into Oceanside by 4:15!! My favorite part of the ride was through the residential district of San Clemente-another roller coaster ride through the rolling hills!! Whee!! The guard at the gate of Camp Pendleton told us about a guy who was riding from San Diego, which took 4 hours. He was impressed and said he could never do that! And this is a guy who went through boot camp! We told him I came from Seattle, but I didn't tell him that there were days I was in the saddle for 10 hours!!

At Camp Pendleton, we saw helecopters doing live fire exercises. Boom!! Boom!! Cool!!

Had dinner at "Joe's Crab Shack" at the Oceanside Harbor, where the servers did a line dance to "Cotton-Eyed Joe!" Very entertaining!! Listen here: http://s3.amazonaws.com/mybukit/media/dmxPlayer.html They had very good seafood enchiladas as well!! YUM!!

This Motel 6 here is quite nice and the staff are very friendly!!

Bound for San Diego tomorrow!!

Day 24 August 3, 2010: Avalon, Catalina Island (No Riding)

Had breakfast at "Joe's Place: Eat Here!" Pecan pancakes with bananas. YUM!!

Went to the "Wet Spot" to rent snorkel gear (including wetsuit-yes, the Pacific is still cold in California) and went to "Lover's Cove"-a protected marine refuge-for a few hours of snorkeling. We had a great time enjoying the water and looking at all the fish-Orange Girabaldi (and the juvenile ones with iridescent purple spots), large Blacksmith, and some pale yellow fish. Snorkeling through the kelp forest was pretty cool! And the feeling of the waves pushing you in and pulling you out again-very soothing! After a few hours, Jim got frustrated that his mask kept leaking and decided to call it a day. Got one good underwater picture of the Orange Girabaldi-the California State Fish.

Spent some time in the town square by the water watching people. There is a roped-off area behind the marina that is excellent for swimming. It's nice to rest and talk about miscellaneous things besides biking. Had a late lunch at "Catalina Cantina," which had excellent burgers! Had a light dinner of nachos at "Mi Casita," which had the most tasty 3 tequila shot Margaritas!! They were huge!! We each had one and then split another one-they were SO GOOD!! Needless to say, we were staggering back to our room and very happy!! On the way back to our room, we saw a guy on the square playing what I found out is called a cimbalom, which is a type of hammered dulcimer from the eastern european culture. We sat and listened for awhile and looked at the water. VERY romantic!!

Impressions of Avalon: Avalon is a great tourist place to visit. In fact, if not for tourism, it would not have gotten started and would probably not exist still today. It's a nice little walking town and would be a nice place to have a little beach house to escape to. It feels very safe with very few cars, relying on golf carts for transportation. I'm loving the casual California vibe and wondering how I can take it home with me.

The Casino. Did you know, this is not really a "casino" as we know it? "Casino" actually means "place of entertainment." This is a music venue which has a huge ballroom inside that can hold 2000 people. Back in the day, big band music played here featuring artists such as "The Glenn Miller Orchestra."

Music is still played here during festivals and there is also a first-run movie theater inside.

Murals at the Entrance to the Casino

Beautiful Gardens Surrounding the Casino

Day 23 August 2, 2010: Avalon, The City of Dreams (No Riding)

Jim and I slept in and then had breakfast at the "Original Jack's Country Kitchen." Jim had the "Portugese French Toast" and I had the "Swedish Pancakes with Lingonberry Sauce." YUM!!

Went to the Catalina Island Museum which was very nice with lots of historical information. The place started as a vacation spot for the wealthy and investments for real estate tycoons. The Banning family developed Catalina as a resort community. The fire of 1915 destroyed most of the buildings in Avalon, putting the Bannings in huge debt. They were forced to sell everything, which paved the way for William Wrigley Jr. Wrigley loved the Chicago Cubs, so he built a baseball field to the exact scale of Wrigley Field in Chicago and the Cubs soon began spring training on Catalina. Visit the Catalina Island Museum website at http://www.catalina.com/museum.html

Had lunch at the "Casino Bar & Grill" where we ran into our waitress from the Lobster Shack. Great fish tacos and horchata!! YUM!!

Wrigley Mansion

Went on a walking tour of the "Icons of Avalon," which included the history of the Casino, the Hotel St. Catherine, the Tuna Club, the Yaught Club, the Pilgrim Club, the Sombrero Fountain with original tilework, the Wrigley Mansion, and the Holly Hill House. We finished our tour with a wine tasting, which had a flight of French Rose and another flight of Roses from around the world including Argentina, Spain, and South Africa. We also had fococcia pizza to go with our wine. We bought a bottle of "Crios Rose of Malbec" with some fudge to take back to our room for later!!

Had dinner at the Lobster Shack. (Our waitress is no doubt thinking we are stalking her)! Great cheese ravioli!!

Tomorrow we go snorkeling at Lover's Cove!! FUN!!

My PKD Story

I am a patient, a volunteer, and an advocate. I was diagnosed with PKD on April 12, 2006, the day before my 36th birthday. I live with PKD and deal with the physical and psychological effects of chronic disease every day. Physical symptoms for me have included high blood pressure; swollen ankles; occasional fatigue and twinges of pain; and dwindling blood cell counts. Psychological issues include depression and anxiety that comes with worrying about my health and future complications; worrying about financial and insurance issues; and facing my own mortality-not knowing when the ball is going to drop for me and how severely. Fear of the unknown becomes a huge energy drain!

When life throws you a curveball, you have to figure out how to deal. So I deal with it by being active, staying positive, and advocating for myself and others. I exercise, eat well, and completed a triathlon last year. For the last three years, I have been involved in advocacy by traveling to Washington D.C. to visit my representatives in Congress, lobbying for important issues facing PKD patients. The efforts of advocates like me have resulted in several issues being passed in Congress. There is much more of a feeling of power in doing than in worrying.

In some ways chronic disease is a blessing. It has a way of waking you up to life-how precious and wonderous it is! And I want to get all out of life while I still can. I have had to think about many aspects of my life and how I choose to spend my time-shifting my priorities many times along the way. No one ever said on their death bed, "I wish I would have worked more!" So, I am choosing now to work less, play more, and appreciate more of the world and the people in it. I'm choosing NOT to put off the things that I love to do or have not done that I've always wanted to do. Now I am doing them. It has always been a dream of mine to bike down the coast-and this year I'm doing it!!

Remember how precious life is and grab it by the horns! You only have one life-treat it like the blessing that it is and live it like there's no tomorrow!!

Ride on!