A Hopeful Guinea Pig

Giving up on Remicade, after struggling to find the right treatment for more than a year, felt sort of like going back to square one... Even though I still felt like some sort of guinea pig, at least my rheumatologist helped me feel like a hopeful one. 

Read more at RheumatoidArthritis.net.

World Arthritis Day

Did you know that October 12th is World Arthritis Day? And that 1 in 5 (22%) of adults in the United States suffer from arthritis? Or that there are more than 300,000 children growing up with arthritis?

Read more at RheumatoidArthritis.net.

Wear Blue Saturday!

This morning when I dropped OZL off at school, I picked up a flyer explaining everything that his school is doing to support National Breast Cancer Awareness month. As a woman myself (with breasts I love!) I think it is fantastic that such an important cause gets so much attention in the month of October. 

However, I have to admit that I do find it a bit frustrating that, while everyone knows to wear pink this month, almost no one seems to know to wear blue on Saturday to support World Arthritis Day. Every October the one day set aside for arthritis awareness seems to get lost in a month of pink.

But, rather than just being frustrated, I decided that I need to do something to increase awareness about arthritis. So I sent the school the following email. I hope that they decide to get involved in this cause too!! (Spoiler alert: I am the honoree at this year's Denver Jingle Bell run. More about that in a future post!)

Dear School Director~

When I dropped OZL off at school this morning I picked up a flyer about everything the school is doing to raise awareness for breast cancer - wearing pink, providing information, raising money. As a woman with breasts myself I have to say that I think what you are doing is fantastic!!  I know that 1 in 8 (12%) of women in the United States will develop invasive breast cancer during their lifetimes. 

But did you know that this Saturday, October 12th is World Arthritis Day? Or that 1 in 5 (22%) of adults in the United States suffer from arthritis? Or that there are more than 300,000 children growing up with arthritis? Or that arthritis and its related complications can sometimes be life-threatening? 

While I obviously support breast cancer awareness, sometimes I find it a bit sad that the single day set aside for arthritis awareness seems to get lost in a month of pink. I do a lot of volunteer work with the Arthritis Foundation, so I have met a lot of kids growing up with arthritis. Did you know that there are more kids growing up with arthritis than with juvenile diabetes, cystic fibrosis, and muscular dystrophy COMBINED? I know a teenage girl who had both of her hips replaced by the time she was fourteen. I have met kids who were diagnosed with arthritis when they were learning how to walk. These kids will never know a life without arthritis, but most of the world doesn't even know that kids get arthritis too. 

Seeing as World Arthritis Day is the day after tomorrow, I realize that it is probably too late for the school to do anything to recognize it (this year!). However, if you are interested, I wanted to offer another way for the school to get involved in a cause that affects so many children. 

I am the honoree this year for the Denver Jingle Bell Run/Walk for Arthritis (I have rheumatoid arthritis myself and it played a huge role in my ability to have OZL). The walk is a really fun event for kids - with costumes and activities (last year Santa was there!) - and the money raised goes to arthritis research, so that maybe someday kids (and adults!) won't have to live each day with arthritis. 

Would the school be interested in passing out a flyer about the event? Or I would really love to have any member of the school - staff or parent or child! - join Team Z and walk with us! Or perhaps the school would want to start a team of its own? 

Please let me know if you might be interested. And thank you for everything that you do! We are very happy to be part of the school family!

~Mariah~

Facing Fatigue

I was tired of my joints hurting & making it hard to do everyday things. I was tired of doctors…I was tired of blood tests. I was tired of experimenting with medications …And, perhaps most of all, I was so very tired of being tired. Learning to live with fatigue can be a long, complicated, & frustrating process.

Read more at RheumatoidArthritis.net.

2013 California Coast Classic Day Eight - The Last Day!!

Today Team Z rode the final 56 miles from Ventura to Santa Monica. APL wasn't feeling much better but he did decide to ride today anyways. Unfortunately for all of the riders there was CRAZY wind today - blowing people off the road and making progress really difficult and rather scary. 

Everyone was so parched from the wind that we ran out of water where I was working at rest stop two. I felt so bad that we didn't have enough water for the riders who were working so hard out there for us today! When our backup water didn't arrive I finally drove to a nearby campsite to find more water myself. And when we shut our rest stop down I put one of the water containers in my car and stopped at the top of a couple of hills along the route to provide a little extra backup! It turned out to be a really hard day and I was so glad I could be there for the riders!

It was pretty awesome to watch all the riders finally come through the finish line in Santa Monica. I wish I could write more eloquently about how proud I am to have been a part of such an amazing endeavor, but I am so so so very tired right now that I can barely think straight. Suffice to say that the ride raised over ONE MILLION DOLLARS for the Arthritis Foundation and we raised awareness about arthritis all the way down the coast of California. What an amazing experience!! 

2013 California Coast Classic Day Seven

Today Team Z rode 90 (yes, 90!) miles from Bulleton to Ventura. Unfortunately, APL wasn't feeling well last night and ended up not being able to ride today. He sat with me for a while at rest stop one and then his mom took him onwards to the hotel to sleep some more. Hopefully he will feel well enough to do the end of the ride tomorrow. Send good healing thoughts his way please!!

I honestly don't feel very well today either. I am seriously starting to crash - achy and completely exhausted - but somehow I am pushing through. I think it has something to do with the amazing enthusiasm and endurance of the riders and volunteers - they are keeping me going! I didn't remember to take very many pictures today, but we did get a few of my awesome outfit for Blue Day!

Onward to the finish line tomorrow!!

2013 California Coast Classic Day Six

Today Team Z rode 65 miles from Oceana to Bulleton. I was supposed to work at rest stop one, but I was pretty late because my stamina has taken a hit and my RA is unfortunately starting to flare. But I did eventually make it there to help ring the cowbell! And all of these enthusiastic and committed people are helping me keep going. 

Today I met the couple riding the tandem bike. It turns out they are on their honeymoon and they asked their wedding guests for donations instead of presents. I can't think of many things much more awesome than that!! Also, Caitlin Ryan was today's honoree, and she is one of the most amazing young women I know. Caitlin was diagnosed with juvenile arthritis at the age of three. She is now in 10th grade and has already had both of her hips replaced. I'm so glad to have had the chance to meet her and her amazing family. You can read more about Caitlin's story here.

After a long day APL and I took OZL to an awesome park near Solvang to run around a bit. Then the whole team went to the Firestone Walker Brewery to share some beer. And now it's 7:15pm, which is pretty much bedtime based on our level of exhaustion!!

 

 

2013 California Coast Classic Day Five

Today Team Z rode 59 miles from San Simeon to Oceana. I worked at the first rest stop again - only today it was cold and very foggy! But that didn't stop us from ringing the cowbell! Luckily the fog cleared up when we went through San Luis Obispo. Checkpoint two was at Wally's Bicycle Works where the riders (and volunteers!) were provided with AMAZING free tamales (thanks Wally's!)

The theme today was favorite sports/college team, so our family rocked our Colorado Rapids gear while APL's brother and his girlfriend wore Lakers and Eagles jerseys. I also met some riders sporting University of Colorado and Princeton gear. 

After we got to camp we went back to San Luis Obispo to share a very delicious dinner with some family friends. All in all, a great day!

2013 California Coast Classic Day Four

This post is likely to be a bit delayed due to lack of cell service!! 

Today Team Z rode 69 miles from Big Sur to San Simeon. OZL, grandma, and I worked and rang the cowbell at rest stop one, then caught up with Team Z at rest stop two for a snack. On our way in to camp we stopped to see the elephant seals. It was a beautiful day!

2013 California Coast Classic Day Three

This post is likely to be a bit delayed due to lack of cell service!! 

Today Team Z rode 49 miles from Monterey to Big Sur. OZL, grandma, and I started our day ringing the cowbell at Lovers Point Park in Monterey as the riders got started. Then, thanks to the other amazing volunteers who picked up my slack, we took a break from volunteering to take OZL to the Monterey Bay Aquarium. I remember loving that aquarium when I was a kid so it was really fun to visit again with my own little boy. And luckily OZL seems to be feeling a bit better today and he really enjoyed running around to see all the fish! After the aquarium we helped pack up rest stop one and enjoyed the route to Big Sur, which was pretty spectacular. California sure is beautiful!!