“Henceforth I ask not good fortune, I myself am good fortune.”
Out on the coast, the risers enjoyed a beautiful sixty miles today, passing by small towns and able to cross to wonderful points of interest along route 101. I understand from some of the veterans, that this is a favorite day, due to the proximity of so many wonderful wineries!
Today, Dave had some new riding partners in Tim, from Palos Verdes, CA and Paul, from Atlanta, GA. That’s one of the wonderful benefits of this event is that it draws people from all over the country, and even riders from outside of the country. The camaraderie of experiencing such an adventure makes for an easy ice-breaker in getting to know a lot of wonderful, interesting people!
Before the ride, I really wanted to get some custom made jerseys for Dave to wear. We have team t-shirts for the walk which feature a drawing Caitlin made when she was five. She named our walk team the Princess Parade:
Over the years, Caitlin has asked many times for us to change this “brand”…. but I never want to. When you are diagnosed with Juvenile Arthritis, that is the name of your diagnosis no matter how old you become. Technically, you don’t switch to a diagnosis of RA when you hit 18 or 21 years of age. So, even when Caitlin is 35, she will technically still have JA. And this image, with the words that she spelled out in her swollen little fingers, swollen with arthritis and the effects of prednisone will always remind me of where we have been, how far we have come, and how many are still on this stinking roller coaster.
So, I dove into the new world of cycling jerseys and sought a vendor who would make us a simple jersey with Caitlin’s logo. Something basic that wouldn’t cost and arm and a leg – Generally, custom-made jerseys can cost upwards of $125 each. ouch. So, I found a vendor who was substantially less, given that I wasn’t going to do a fancy design or a lot of logos. Unfortunately, due to a delivery error, the jerseys didn’t arrive until Dave was on the road out of San Fransisco. So, I had them shipped to one of the hotel stops, where a lovely AF staffer, Amy, picked it up and brought it out to the campground. Today was Dave’s first day in the jersey, and I think it is well matched with the tiara!
Heading in to camp today, Dave stopped outside camp for some chips and salsa with some of the riders. Consequently, he was not able to grab a piece of the fading sunlight to set up his tent.
He said this will mean wet clothes tomorrow morning – It’s been pretty moist the last few nights! Generally, Dave has been showering in his riding cloths to rinse them out, and then laying them over his tent to dry. Tonight though, those puppies will stay wet and tomorrow morning, hell have to bag them up to carry along – hoping for more sunshine later.
Today, our good friend Alexa was the honoree. Alexa is a remarkably mature girl for her years, and she is warm, outspoken, and overflowing with joy. I know she wishes she could have been there today to see the riders…. but she’ll be joining us at the finish line!
My mission moment today, goes out to Jen, who is also on the ride. Jen is 38 years old and has had arthritis since she was 15 months old. Unfortunately, that seems to be a very common age for onset. I think that one day soon they will understand what triggers go along with that age to make such a large occurrence cluster. I don’t know Jen’s story personally, so I can only speak in a general way about the hardships endured by children who suffered from JA prior to the onset of modern medicine. It was quite frequent for children to be taking 20-30 pills a day, including massive doses of aspirin (which led to severe ulcers and gastrointestinal issues. They also used gold-injections, d-penicillimine and other remedies that were a crap-shoot at best. Now, there are additional medicines DMARDS (disease modifying anti-rheumatic drugs) and specific biologics that can more accurately target the causes of inflammation to help bring relief and prevent damage to people who suffer from juvenile arthritis. Unfortunately, for so many, those medications came too late to prevent permanent damage. Even for my daughter, who was only diagnosed ten years ago, there was not enough, soon enough, to control her disease.
BUT – as I said, Jen is riding in the CCC. She told Dave that she does not do the walks, because frankly, 3 miles is not feasible given the damage her JA has caused. But, riding 525 miles is within her scope! And apparently, she is seriously kicking the butts of all the riders up the hills – First to the top! Go Jen! Never met her and I already love her for what she does for my hope for Caitlin’s future, making me believe that no matter what, Caitlin will overcome too.
Back to the ride…. tomorrow will be another 60 miles to Buellton, which if you didn’t know, if fairly famous for having the orignal Anderson’s Split Pea Soup. Although, not sure I would recommend that for the riders 🙂