Facing Forward – California Coast Classic Edition: Mia

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15^th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Mia (Team Sluggy)

Hometown: Boulder Creek, CA

Diagnosis: enthesitis-related juvenile arthritis

Age at Diagnosis: 6

Current Age: 12

How is your family involved with the California Coast Classic?

My parents have ridden the CCC to support me and other kids with arthritis for the last three years. They weren’t able to ride this year, but my mom still volunteere to help.

How are you currently treating your condition?

My arthritis is treated by Humira the injection and methotrexate pills. I do also use ibuprofen when I am in pain.

What are the biggest challenges you have faced since your diagnosis?

The biggest challenges I have faced since my diagnosis are the pain and not being able to participate in some activities. It makes me very sad when my friends are out running when I can’t. Another thing that was also hard was the cortisone shots I used to have to get when I was younger. I would be wheeled out of the hospital in a wheelchair crying because it hurt so bad.

What are your favorite tips and tricks for managing everyday tasks?

My favorite tips are to stop when I need to, because I tend to try and ignore my pain because I don’t want to tell anyone. I also enjoy tips from my friends with arthritis, like what helps take away the sting of the shot. I manage everyday tasks by resting when I need to and taking medicine when I need to. It also helps to have support from my friends.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

If I could go back to diagnosis day and tell myself one thing, it would be that it will all turn out OK. That I am doing better and that I shouldn’t worry about not being able to walk because I can do that. I am currently on the school basketball team and I enjoy it very much. Sometimes I am sore and it is hard, but I work through it and it is so fun to play! Today my ankle was swollen and sore, but it got better and I still played. I encourage kids with arthritis to join team sports. They are fun and great exercise. Swimming is great for arthritis and it is cool during these hot days.

California Coast Classic - Day 1

Today the riders covered 85.9 miles - from San Francisco to Santa Cruz. We had lovely foggy weather and a whale was hanging out with us at the first rest stop! Michael (the other member of Team Z this year!) broke a spoke near the end of the day, which delayed their arrival to camp, but otherwise all is well!

Our boys are now safely at Grandma & Grandpa's Cherry Farm - and already enjoying gator rides galore! We got to FaceTime with Owen before bedtime and he seemed happy and comfortable. Thanks so much, Grandma and Grandpa! We're sure you got your workout today too!! 

And They're Off!!!

Good luck, riders!!! 

Facing Forward – California Coast Classic Edition: Theresa

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15^th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Theresa (Team Sluggy)

Hometown: Boulder Creek, CA

Volunteering in Honor Of: Mia (daughter)

Honoree’s Diagnosis: enthesitis-related juvenile arthritis

Honoree’s Age at Diagnosis: 6

Why is it important to you to participate in the California Coast Classic?

The past three years I have ridden the California Coast Classic in honor of my daughter and all the other children affected by arthritis. In 2012 I did the two-day option with my sister, Cathy. The following year my husband and I did the full eight days, while she volunteered along the route. Marv (Mia’s dad) and I also rode last year with a new team member, Dan. Unfortunately Marv and I aren’t able to ride this year due to his new job and lack of childcare.

Mia has enthesitis-related juvenile arthritis. She was diagnosed when she was six – she is now twelve. Although I couldn’t ride this year, I still wanted to support the CCC as a volunteer. The Arthritis Foundation has done so much for our family: education, family days, camps, and conferences. Knowing Mia wouldn’t go to camp without knowing anyone, I contacted the SF office and asked to be set up with another child that was also going. Mia and Kayleigh met a couple of weeks before camp when they were 8 and walked onto the bus holding hands – that image still brings tears to my eyes. They continue to have a close relationship. Kayleigh is the honoree in Monterey. The Arthritis Foundation has also given Mia opportunities to learn about advocating for herself and others in Sacramento and Washington D.C. 

What are the biggest challenges you have faced since Mia’s diagnosis?

The biggest challenges for me has been controlling my anxieties about Mia’s health and future. Another challenge is people who just don’t “get it.” Jut last week a “friend” questened the fairness of my “sick kids” (my son has food allergies and eosinophilic esophagitis) being allowed to attend school while her healthy son “can’t.” She is upset about mandated vaccines in the schools and somehow relates it to my children.

What are some of your favorite tips and tricks for helping someone with arthritis manage everyday tasks?

I remind Mia that I don’t know what it feels like to be her and that she needs to listen to her body. We never say “no” to any activity she wants to try.

As a caregiver, how do you manage to keep facing forward every day?

Mia helps me keep facing forward by being very active and always being open to new experiences. She just made the basketball team – her first team sport ever! Looking forward, Marv and I talked about how fun it would be to ride in the CCC as a family someday. I’m not sure we can pull it off, but it’s certainly fun to think about!

If you could go back to diagnosis day and tell your past self one thing, what would it be?

If I could go back to the day of diagnosis I would tell myself that Mia will adjust well and continue having a fun and fulfilling life.

Two Weeks of CRAZY

The last two weeks have really been....something. 

It started with an intense dull pain in my husband's side, which unfortunately turned out to be a kidney stone. I have a friend who has three kids and has also had a kidney stone - and she said the stone hurt worse than childbirth. I don't personally have any experience with labor or childbirth, as both my kiddos were born via planned c-section (I've got two kids but have never even had a single contraction!) But judging from my husband's face when I showed up at urgent care last week it seems like she is probably right. APL's agony lasted almost an entire week before the stone passed - which left me caring for my husband and two small children. Thank goodness my mom was here to help!!

Then there was my tooth saga (because when it rains, it pours!) More than a month ago, I had a small cavity filled. I had already been back to the dentist once because the tooth was hurting, and he had given me some medication. Then APL got the kidney stone and I basically didn't have ten seconds to pay attention to myself for a week. So, having pain medication on hand, I took some and moved on. But as soon as my husband's stone passed and that anxiety wore off, I realized my tooth hurt so much I wanted to cry.

I went back to the dentist on Monday morning, and he confirmed that the tooth had died. He started to do a root canal, but unfortunately determined that my roots were too curved and that I would need to see a specialist. So on Wednesday I drove to Denver and saw the specialist. I had my root canal finished. Then, just this morning, I had my crown put on. Hopefully that is the end of my tooth saga!! And, once again, thank goodness my mom was here to help!! We seriously would not have survived the last two weeks without her!

When the dentist mentioned that my tooth might be infected, I was really concerned that it would mean delaying my Rituxan infusion. I had "Round 1" of Ritixan six months ago, and while it seems like the medication is working for me, I did start to feel like the effects have been wearing off this past month. So I really didn't want to delay my infusion! Luckily my tooth was not badly infected, so I was able to get my scheduled infusion on Tuesday. So here's to hoping this medication continues to work well for me! I've got a second dose of "Round 2" scheduled in two more weeks.

After all the medical drama we have experienced over the past two weeks (I have spent at least 2+ hours at the doctor or dentist every day this week!) I was proud that I was able to pull it together this evening to be part of the Joint Decisions live web chat. I think I looked pretty good for someone who just had a root canal yesterday and a crown this morning! And it turns out that speaking in front of 100 people is not that hard when you do it alone in a room! (Haha!) If you missed the chat, keep an eye on the Joint Decisions website, where they will share more info from today's chat soon. (And mark your calendars for October 20th at 6PM ET, when I'll be helping to host a live Twitter chat!)

While it may seem like things couldn't possibly get any crazier for our family right now, tomorrow morning we fly to San Francisco with both our kids in tow to take part in the Arthritis Foundation's California Coast Classic. This will be my husband's third time riding - and my second time volunteering along the ride. And while it seems like we couldn't possibly have any energy left after two weeks of crazy, we are actually super excited to start the ride and spent time with our CCC family! I'll be sharing lots of pictures and stories from the ride here on the blog - and be sure to check out Facebook, Twitter, and Instagram for more! 

Time to get my kids to bed and finish packing!

What Keeps You Motivated?

Remember the HealtheVoices Conference I attended a few months ago? Well they just released a video featuring yours truly!! The video also features some of the other amazing bloggers I met - both those living with RA and those living with other chronic illnesses. We have a lot to learn from each other! You can check out the video below!

HealtheVoices - Group Project Video "What Keeps You Motivated?” from Tonic Life Communications on Vimeo.

RA In The Workplace

While perhaps not the most stimulating topic in the world to read about, if you are employed and living with RA it is worthwhile to know about your legal rights in the workplace!

Click here for a general review of your rights as an employee under the Americans With Disabilities Act. 

And then click here for specific suggestions of workplace accommodations that may be appropriate for people living with RA. 

6 Myths About Arthritis

There are so many myths and misconceptions out there about arthritis - what it is, who gets it, and how it impacts our lives. It's time to set the record straight!

Check out this article I wrote for Mango Health!

Handicapped Parking Without A Placard

You know what's terrible? When people without handicapped placards think it’s ok to park in a handicapped spot for their own convenience.

Read more at RheumatoidArthritis.net.

Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey

Looking to build a support team to help you manage your RA? Joint the next Joint Decisions web chat - featuring yours truly as one of the panelists! It's free!

The chat is called Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey. I'll be sharing my own experiences live via webcam (time to move those piles of baby clothes out of my office!) There will even be an opportunity to ask me questions! 

Click here to register!

(Don't worry - you don't have to be on camera! You can drink wine in your pajamas while you watch me! Being on camera is one of my personal challenges that I am working hard to face - so I'd appreciate your support!)