JA Conference: A Reflection

JA Conference
Ramsey Blog
Reflection – July 24, 2013

As customary in my life I usually have to think about things and let them percolate a little bit before I really can figure out and express how I feel. During the last couple of days I have been able to reflect on and think about this amazing gift our family was given – the gift of attending our first JA Conference. I think we all learned so much and gained so much I just had to write it all down. I really do think it was life changing in terms of its impact on our JA journey as a family. Where to begin? I think I’ll just share the feelings I have had during the last few days…

I’m so grateful for being able to attend the conference! Not only were all the gifts and the perks awesome (the Disney trip made my son super happy!), but I didn’t realize how much I would enjoy meeting and talking with other families. It was so nice to be able to speak the same language even though this is all still new to us. It was nice to talk with people who know what we are going through and be in community with a group of people who don’t pity you when you say your son has arthritis. It was not shameful to ask “Which one of your children has arthritis?” “What is his/her diagnosis?”, or “What medications have you tried?”. I’m also grateful for the knowledge I gained at the conference. I feel more equipped to make a plan to help my son track his pain on a regular basis and I have more questions to ask his doctor at our next visit. Finally I’m grateful for the opportunity Zach had to meet other kids with arthritis. He, like us, is resistant to admit that he might need help sometimes. This was evident when he quickly dismissed the “comfort spoon” giveaway that he received in the conference registration bag. We tried to explain that everyone is on their own journey. After the conference was over, however, we were able to have our first real family conversation Sunday night at 8pm sitting at a diner. Zach expressed his feelings about things that happened at school with friends and teachers because of arthritis and he asked if it was “like a disease or something”. That was hard to hear and have to answer honestly (see denial below). We listened and had a really good talk about some of the things we learned and how we can do things differently in the future as a family. I was thankful because Mike talked too about the things he learned from dads– it finally felt like we had come together and were on the same page with this arthritis business.

It is not just a river in Egypt! I realized just how much I was and probably still am in denial about this whole situation. Even though we have been involved with events sponsored by the Arthritis Foundation since October when Zach was diagnosed, I have been in denial about the truth of the situation. My son has a chronic illness. A chronic disease. I don’t even like to type those words. I don’t think of my son as sick and I hope that never changes. Thankfully his diagnosis is oligoarticular (limited to 4 or less joints) and in his case it is just his right wrist and thumb, we caught it early and the meds are working. However, the truth of the matter is: HE STILL HAS ARTHRITIS and has some of the same feelings and experiences as other kids who have different, more severe diagnoses.

Some of the stories I heard from the families were heart-breaking. From hearing families that have to drive 6 hours one way to see a pediatric rheumatologist monthly to hearing about kids who still are struggling with finding the right medications, to hearing families whose children just woke up one day not being able to walk, I was humbled about our own experience so far. Even though I’m grateful for where we are now, I’m fearful for the future. It is like I’m waiting for the other shoe to fall. What if the arthritis develops in another joint? What if Zach is experiencing side effects from the methotrexate that we haven’t identified yet like the “mental fog” that we heard about from multiple families? What are the long term effects of the medication? The “what ifs” can drive me crazy. I try not to live in “what if” land, but I have to say it was nice to be able to talk about these fears with those who share them and understand. Now it is time to stay in the present and meet challenges as they come.

I came away from the conference filled with hope and inspired to take action! I met one family with a daughter diagnosed with Zach’s type of arthritis at age 2. Now at age 9, she is in remission and off medication! That is wonderful news! Hearing from the youth speaker panel made me very hopeful too. These young adults diagnosed as kids and now in their 30’s and 40 candidly shared their trials and joys through their arthritis journey. The medications that are being used now are SO much more effective than 20 or even 10 years ago. Fewer surgeries for kids and fewer kids in chairs. Also, good news! I was truly inspired by the gentleman with RA who climbed Mt. Everest. It was so motivating to hear about someone who did not let his real or perceived limitations stop him from accomplishing his dream. What a role model for all of us!
Hearing all the kids’ stories, and learning about the lack of pediatric rheumatologists in this country (some states have zero!), inspired me to take action! In the coming weeks I want to find out how I can be an advocate for JA and how I can make a difference to raise money for more research, to support more pediatric rheumatologists and to ultimately find a cure! Won’t you join me cause kids get arthritis too!!!

JA Conference: Day 4

Sunday, July 21

Last day already! After another wonderful breakfast, Zach and Mike went to pick up his Razor scooter! Every child who attended the conference got one. As if we had not received enough wonderful gifts from the Arthritis Foundation and sponsors this really topped it off!!

After we dropped off Zach at kids’ camp we split up to go to the final mother/father sessions. The mom’s session was simply a time for moms to share anything they learned or gained from the conference. There were lots of tears and some laughs too. I stood up to share and, of course I cried too. I just expressed my gratitude for the opportunity to attend the conference and for how much I was inspired by all of the stories from the families we met. I also shared my highlight at Disney last night as I witnessed Zach telling a complete stranger about arthritis. It was a really cathartic session and I was glad to reconnect (and cry) with some of the moms from the Great Lakes region. We exchanged information so we can connect on Face Book and stay in touch!! I hope we can all meet again in Colorado next year!

The closing session was amazingly inspirational. First, we heard Jeffery Gottfurcht’s extraordinary account of how we was the first person with RA to climb Mt. Everest. After failed attempts, losing someone on his team and sight in one of his eyes, he finally accomplished this feat in May 2011.

Lastly we watched the kids’ parade. Each age group paraded in with their group and counselor. It was fun to see so many kids and feel all of their energy and enthusiasm. Here is Zach with his group.

The final session wrapped up with a Power Point featuring pictures over the entire conference set to some really inspirational music. There were a couple of shots featuring Zach and the Ram fam. Hopefully we can get access to those pictures eventually.

All in all our first JA conference was an absolutely fantastic experience in every way. I’m still processing all that I’ve learned and taken away from the experience. I’m grateful for the opportunity to be able to attend and I look forward to going to the 30th JA conference in Colorado next year!!!

JA Conference: Day 3

Saturday, July 20

Another full day at the conference!! After another wonderful breakfast we dropped Zach at the kids’ camp and then attended the morning general session. This first half of the session was focused on award presentations. This was very moving as awards were given to people who have contributed to making a difference for arthritis in the following categories: parent leader, child leader, young adult leader, researcher, and health professional. The personal stories shared about the people who won were very inspirational! The second half of the session was focused on research being done on arthritis. To be honest, it was a little bit over my head, but I am convinced after listening to the presenter that we need to continue to support funding for research on JA and autoimmune diseases. I am also convinced that we need to keep advocating for more pediatric rheumatologists!! This map is very sobering in terms of the limited access some folks have for care for their children. The states in the purple have zero pediatric rheumatologists!! One woman I met has to travel 6 hours one way once a month (a two day trip) just to get her child to a doctor’s appointment. That just stinks.

The two breakout sessions we attended were on 1) Exercise, Sports, Casting, Proper Footwear and 2) Immunology. The exercise one was a good review on stuff we already knew about how activity is good for kids with arthritis and the immunology session was very good about explaining the immune system in detail. This time I followed along and took lots of notes!

Zach continued to enjoy kids camp and liked a “magician guy” who performed. He shared an activity that taught a lesson for asking for help and it sounded like he really learned something! It is neat because they sneak in education for the kids through fun activities. I guess that is probably more effective than a lecture from mom!

We enjoyed lunch on our own at a local Joe’s Crab Shack.

Zach actually tried shrimp, fried, but hey, it wasn’t chicken fingers!

In the afternoon we attended a roundtable session on raising a son with JA. This was really helpful in terms of hearing other people’s stories, connecting and sharing with each other. Since JA affects girls more than boys (5:1) it is good to be able to connect with others who are raising boys with JA.

Before we knew it the day had flown by and it was time to go to DISNEYLAND!! Here we are ready to go with me wearing my fashionable fanny pack!!

We had fun riding the rides and navigating our way through a very crowded park! We have never been to any of the Disney parks as a family so it was fun to see Zach get so excited and happy on the rides. I’m again so grateful to the Arthritis Foundation for their generous gift of tickets! It was so awesome going through the park and high-fiving all the people in blue shirts! Of course the line was “love your shirt!”, but it was such a great feeling of community that we were sharing in.

One of the things that really inspired me at the conference actually happened at Disney.

We were eating our ginormous caramel apples when a gentleman next to us asked us about our shirts. I was getting ready to answer, but before I could Zachary began to explain it to the man himself, in his own words. Now, it is no surprise that he is not shy about talking to people, but that was the first time I’ve ever heard him talk to someone about arthritis before. He didn’t talk about it in a defeated or ashamed way. He talked about it as an advocate and wanted to be sure the man knew just how hard it is for some kids and their families. I was really proud in that moment. My son is starting to find his arthritis voice! Just one of the many benefits of this amazing conference experience.

“Indiana Zach”, my hero!

JA Conference: Day 2

Friday, July 19

Today has been a great day! After breakfast we dropped Zach off at his kids’ camp room and we went to the opening general session. It was split into two sections. The first part consisted of a welcome and overview from the Arthritis Foundation with new cool updates that are being launched (new webpage and facebook page), followed by a young adult panel. The men and women who served on the panel were very inspirational. It was neat to hear their personal stories and how they have faced the challenges in their JA journeys. The second part of the morning was focused on advocacy. We heard from a local congresswoman and her staffer about tips for being an advocate either locally or in Washington. We also heard directly from a young girl and her mom about how they have been advocates to make a difference for arthritis in Washington D.C. This little girl, now in her teens, first started advocating when she was 8-years-old. She was very articulate and talked about how she was able to just tell her story with honesty and sincerity without knowing the important roles these government officials played. I couldn’t help thinking that Zach would do a great job advocating. He loves persuading (arguing at times) with people about his ideas and passions. Perhaps he could get involved with advocacy work. Who knows! I learned a lot during this session as I really have not ever really known about this type of advocacy. It made me excited to want to do more locally in Ohio.

We joined the other Great Lakes’ families for lunch at a local restaurant. Yet again, we were humbled by the generosity of the arthritis foundation as the leadership of Great Lakes treated our whole group to lunch!

Great Lakes Kids!

After lunch we hustled back over to the hotel to enjoy some dessert at one of the food trucks that was there for lunch. Shockingly we got ice cream!

After lunch Zach went back to kids camp while we attended two breakout sessions. The first was a general session on the type of arthritis that Zach has: JIA Oliogarticular and Polyarticular arthritis. Lots of information I knew already, but I did learn some new things about medications and learned from people’s questions.

The second breakout session was on nutrition. During this session I felt good because it affirmed that there really is not a “diet” that can help or impact arthritis. It was simply a review of basic nutrition that is good practice for everybody: Eat real food, not too much, mostly plants!! You have to love Michael Pollan! I met another woman whose son has a similar diagnosis as Zach which was nice and helpful.

This evening’s fun activity was a carnival. It was really fun! There were games and activities all around the ballroom for kids to do – all FREE! We all had a great time!

Zach hung out with some new friends!! He got his picture taken with Delano Howell, NFL player for the Indianapolis Colts!

Zach had a lot of fun hula hooping and line dancing with his new buddies. And yes, I’ll admit, I enjoyed dancing quite a bit too!! He made friends with two boys in his camp room – one has arthritis and one is a sibling of a boy with arthritis. But tonight, they were all just 11-year-old boys getting their groove on! So fun!

Zach and his new friend, Johnathon.

JA Conference: Day 1!

Dream, Believe, Achieve!!

That is the theme for the 2013 JA Conference in Anaheim, CA sponsored by the Arthritis Foundation (AF). As some of you know, we were fortunate to receive a scholarship to attend this year’s conference. One of the expectations for scholarship recipients is to submit a brief (me, brief?…gulp) paragraph with optional pics each day for the AF blog. Twist my arm!! So, here is the entry (expanded a bit for my own blog) that I submitted to capture our first day.

Thursday, July 18

We made it!! It was great because we met one of the women from the arthritis foundation on the shuttle to the hotel! After a dip in the pool we headed down to the first timers’ orientation and learned about some general information about the conference. Next we went down to the registration area and were greeted by tons of super heroes!! The energy and enthusiasm was great and it was neat to see all the kids get so excited about. We took a picture of the Ramsey fam at superhero night!

The opening dinner was awesome. There was live music and a yummy meal of pasta and pizza. Then we heard the keynote speaker, movie producer, Deborah Snyder who produced “Man of Steel” among others. Her message about superheroes was very moving! They closed the program that evening with a PowerPoint featuring the kids “I Dream” pictures. That was extremely moving too! The band played inspirational music like Don’t Stop Believing during the presentation. I videotaped the entire thing so I can share it when we get back to Ohio. Here was Zach’s contribution.

The last thing we did for the evening was a parent session. There was a separate one for moms and for dads so that was cool. I really enjoyed meeting other moms, connecting and coming away feeling very grateful for where we are in our arthritis journey right now. Mike enjoyed meeting the dads too – they had a neat way of customizing the sessions to meet the different needs of the genders. I’m realizing just how much the Arthritis Foundation is such a great resource!! And SO generous! Each conference attendee is receiving a ticket to Disneyland for Saturday night (including $20 food cards for each person), two t-shirts so far for each of us and…each kid gets a brand new Razor scooter!! Yeah, the Arthritis Foundation is a top notch organization!! Zach went to his first session of kids camp last night too and had some fun meeting the other kids. We were all very tired and ready to fall into bed at about 9:30pm (12:30pm EST!!).

Run the HHI highlight reel…

So I feel like I haven’t blogged in forever!! And sure enough it has been about a month!! Funny how that happens when life gets super busy. Either that or nothing particularly interesting has happened. Well, either way, I thought I should write a blog entry about our trip to Hilton Head. I decided to cheat a bit because I’m really just trying to get this blog entry done before our next trip (we leave tomorrow!). So forgive me if you have heard some of these things before. I’m recycling blog posts and adding pictures to them. Am I cutting corners on this one? Yes, but at least it will all be in one place so I can re-read it when I really start missing the beach like in January!!!

We had a pretty uneventful trip down to HH. We stayed overnight at a Holiday Inn Express in Charlotte, NC. It just made sense to break up the trip with our 11-year-old “I get bored in 2 hours little traveler”. Mike had made us reservations at this high-rise hotel with an outdoor pool and fitness center on the roof. It was really fun and Zach LOVED it! We found out later (a few days into the trip) that Mike did not share our enthusiasm for the place. Evidently he saw a critter…as in COCKROACH…skitter across the carpet near the tv after Z and I had fallen asleep!!!! Yeah, that would have been a deal-breaker for me no matter what time of day or night it was. I still get the heebee-jeebies thinking about it!!! Needless to say, we will not be staying there again!!!

Our condo was really nice! Very clean and comfortable and well stocked.

Day 1 – great first full day at HHI! Early solo walk on the beach collecting shells, then exploring Harbor Town, lunch out, a sailing excursion (so awesome we saw a dolphin 20 yards from the boat!), beach time, bike ride, late dinner in the condo and now relaxing with a movie in the condo!

Highlight – SAILING!!! Let’s buy a boat!

Day 2- okay Hilton Head rocks! Morning beach run, yoga (just me) by the pool, then afternoon dolphin and beach combing tour! Saw some cool live animals (dolphins very close) and found tons of big shells and sand dollars. Dinner out = yummy crab cakes! Might go looking for crabs on the beach in the dark if we can stay awake!

Highlight – Beach combing cruise!! We collected tons of bigger shells and sand dollars!

Day 3: Early yoga at the pool, shopping and exploring Coligne Plaza and South Beach, lunch at Salty Dog, then beach time and dinner in. Today will hopefully be our day in Savannah!

Highlight – Salty Dog Lunch!! I seafood combo with 1/2 of a crab salad sandwich – so yummy! Not to mention the hushpuppies below…

They called them hushpuppies, but no, they were more like doughnuts or funnel cakes!! The devil!!

Day 4: Well, good day trip to Savannah with the “on and off” tour. Savannah is such a cool place! It was to see all the historical buildings and architecture. Good thing because tonight was a fail. Tried to go hear an entertainer in Harbour Town, but the parking was non-existent so instead attempted a bike ride on the beach. Oh yeah, it was high tide…oops! Had to walk them all the way back with an oh, so pleasant tween boy just loving every minute of it. Oh well, tomorrow is another day!

Highlight – Trip to Savannah!

Day 5: Great day hanging with the Sams family…beach run, the pool, the beach and then dinner! What a great fam! Ice cream again for dessert at a place called “Frozen Moo”…Z is in his glory!

Highlight – Hanging out with the Sams’ family!

Day 6: sunrise yoga on the beach, then rainy day so outlet shopping, lunch and mini golf. Then we decided to get a jump on traffic and head out last night so we could break up the drive again. Hilarious drive to IHOP and finally a hotel.

Highlight – yoga on the beach and lunch at Nosh! The restaurant by the chef from the show “Restaurant Impossible”

I enjoyed everything we did on our trip. I kept the family going at a pretty good clip which was challenging for my husband! But I think he enjoyed it too. If I had to pick a favorite experience at Hilton Head I would have to choose the beach in the morning. Whether or I was running, walking or doing yoga I was in my element then and there. I’m an early riser anyways, but seeing the beach in the morning with less people, runners and walkers on the beach, dogs playing, and just the sound of the waves. It was really breathtaking. The beauty just reminds me how we are all connected. I was overcome leaving and shed some tears, but that is okay. It just means we need to come back. What is it about water that is so intoxicating and attractive? Until we meet again, Hilton Head – stay salty and calm!