Over spring break, I had a fabulous experience.  I travelled with 13 friends to Mexico for a mission trip.  We spent the week serving children at a children's home.  We provided a Vacation Bible School (VBS) experience and then helped with some  projects around the home, building picnic tables, making a patio and gardening.  I was so thankful to be healthy enough to go on this mission trip and to enjoy an opportunity to help others.  I did have one tough day while there, but my team helped me to make the best of it by giving me different projects to work on with the kids.  It was so rewarding to focus on others and encourage them with love and friendship during their trials, as many have supported me along my journey.

This experience was powerful for me.  I treasured my time with this children and made friends my own age too.  These kids had joy and smiles, in spite of not having parents.  I was not ready to leave.

Sometimes, we can get lost in our own struggles; but, there is always someone else with more challenges.  A great form of distraction from our pain can be helping others.  This weekend my family is going to support a local ministry by preparing food for underprivlieged in our area. 

What can you do to distract yourself?  How can you help others?

    

MERRY CHRISTMAS!!! AND A HAPPY NEW YEAR!!! I love this time of year! I love the season of Christmas! Enjoying time with our family and spending time with friends! 

True friends are there for you, in the highs and the lows. No matter what, they always stand by your side. True friends are uplifting, encouraging, helpful, kind, and caring. They will be there for you when you need them most. They will encourage you and help you through the hard times in life.  They like you for who you are - the good, the bad, the ugly, including arthritis.  My true friends are Caleb and Paul. 7th grade was a very low year for me. Between the physical, social, and emotional stress, life was very hard.  They lifted me up and kept me going through all of it, and they were always there for me to listen, comfort or just to hang out. 

John  15:12-13 "This is my commandment: love each other in the same way that I have loved you.  There is no greater love than to lay down one's life for one's friends."




Take this opportunity, in this Christmas season when lots of things are busy and stressful, to appreciate and celebrate Christ's love and that of your true friends. 

This past week, I attended the Arthritis Foundation Crystal Ball with my parents.  It was AMAZING how many people were there to support the Arthritis Cause!

It was fun to get dressed up, very James Bond-like.  My mother made me dance with her - HOW EMBARASSING!

I had the opportunity to meet a lady passionate about the organization, because her younger sister is bedridden with arthritis.  She was instrumental in starting two key efforts here locally to help kids with arthritis. I also had the opportunity to recognize another kind lady, with a large bouquet of flowers,  for her commitment to support juvenile arthritis research.  I watched people have fun competing for items in a live auction, amazed at the generosity of the people or companies who donated the items, as well as the support from those bidding...all to support research and programs toward a cure for arthritis. 

I know that I am just a teen, and perhaps you too are a teen, but imagine if all of us were as passionate as these people.  I read a book called Do Hard Things.  It told stories of amazing accomplishments by young people, teenagers, who went on to become world renown adults, all because they were willing to "do hard things" and take a stand, helping others in the process. I am not just talking about raising money. I am talking about spreading the word and raising awareness,  letting people know that this cause matters and over 50 million people are worth it.

Just imagine what we could all accomplish... I dream of a day without arthritis.  Don't you?

I don't have anything against "Pink", my family and I have supported my aunt and a dear family friend through their courageous fights against breast cancer. We have walked, bought items where proceeds go to breast cancer research, and sponsored people doing the Susan G. Komen three day walk. But let's face it, breast cancer has millions of dollars going toward research and far fewer people suffer from breast cancer (230,480 in 2011) than arthritis. 50 million people suffer from arthritis. 

People seem to think that arthritis is no big deal and you just learn to live with it.  You just learn to live with a life of pain and suffering -  You just learn to give up your hopes, dreams and mobility - You just learn to live with a lower quality of life - In some cases, you just learn to live with blindness caused by uveitis.  Oh, and by the way, people with arthritis often suffer shorter life spans. In fact, there was a 12 year old girl in California who died from complications from her arthritis this past spring, and my 12 year old friend's life was in jeopardy last year as his systemic disease attacked his heart.  Arthritis can be life threatening. 

Like I said, I don't have anything against "Pink", I am just saying that when I went to the Britannica website a couple of weeks ago and saw an advertisement for Massage Envy and the Arthritis Foundation,  I was psyched! Go Blue!

When the Empire State Building and Wall Street were lit up blue in honor of World Arthritis Day,on October 12th,  I was thrilled! When my friends supported me by wearing blue on World Arthritis Day, it felt good to know that we are raising awareness...and one day people will know much more about "Blue"...and one day just like breast cancer, we will be able to say how wonderful it is that research has developed so many more treatment options to prevent, control and cure arthritis!  Go, Blue!

I made the high school swim team! YEAH! 

This is something that I have been looking forward to for a very long time! In middle school there were no team sports where I could participate. Being at a small school, I often felt left out as the kids grew close through their time together on the various team sports. I could hardly wait to get to the high school where they had a swim team - something that I could do.

Last week we had tryouts, and my family eagerly waited on the results with me. I think they may have been moreexcited than I was.

Joining a new swim team has meant once again that I have to explain to people that I have some "difficulties", and I am not able to do everything, like breast-stroke.  My coaches are awesome though, and they are very understanding and are working with me.  I will add to the team in the other strokes, where I am stronger and they do not require the same hip motion.  

The kids on the team are really nice, and it's cool to recognize their faces in the hallway at school. We are only a week into practices, but I already feel a part of the group and love the energy and enthusiasm of the team!


 

Arthritis affects the whole family. The other night I was called into my little brother's room because he was crying. I don't know what really got him thinking about my disease. Maybe it had something to do with my high school swim team tryouts, he knew that this was important to me. Whatever it was, my brother was sobbing, and kept asking why I had to have this disease.

I always knew the affect my disease and pain had on my parents, but I never really thought about the impact my disease had on my brother and sister.  I guess I should have, because my brother has been excited about raising money for the Arthritis Foundation since he was very little.  He was funny - drawing caricatures for people, selling his paintings, manning a hot chocolate stand all at less than 7 years old.  He did all this to raise money for the Arthritis Foundation, because he wants the scientists to find a cure for my disease.   Last year, my sister spent several weeks of the summer with our grandparents and my brother went away to camp, so that my parents could travel with me to another state for surgery and to care for me afterwards.

Some times I wonder if they ever get angry or resent me, because when I have a flare up of pain, it requires a lot of my parents' time and energy.  Our vacation and travel plans often have to be adjusted based upon my needs.

But then,  my sister has slept beside me on the floor, when I was having bad night", just in case I needed something in the middle of the night.  My brother prays that I will be healed all the time.  It makes a difference, just knowing how much they care.

Do you ever think about these things?

 

As many of you are just starting school, I just started my 6th week of school. So far, I am really enjoying my new high school.  This school is alot different from my old school, in that, it has many more kids in each class, a much bigger school building, and a huge variety of personalities. At my old school, they were able to accomodate me very well when my hips troubled me more on "bad days". At my new school, they are doing a good job, but I still feel like I stand out when I have to go to the office to get my medicine.

A few weeks ago, I was hurting so badly that I had to give in and go to school on crutches, which of course means everyone wants to know what I did to put me on crutches.  Do you ever get tired of answering these questions?  I do!!!  I keep trying to think of a creative and witty response like "I am really a secret agent and was injured on my special op last night in Russia."  Or maybe, "I am the youngest Navy Seal in history, and I was shot in the leg on a mission over the weekend."  If you have any ideas that have worked for you, please let me know.  Anything but the long explanation that always seems so awkward, and then they just look at you.

One of the ways my school is accomodating my needs is to allow me to do weightlifting to meet my PE requirement, since I cannot run. I am really enjoying this class, especially making friends with some of the upper classmen.  This may come in handy, if some wise guy decides to mess with me. I also think that the strength training will pay off when the high school swim team starts in a couple months.  I am looking forward to being a part of a team sport at the school - one that I can do.
 
Last week, with all the hurricanes and tropical storms brewing, I hurt so much that it became difficult to concentrate in my classes.  I had to have my mother reteach my math to me, in order to do my homework...I just could not focus on what my teachers were saying.  Isn't it funny how a storm 1000s of miles away can make a difference in your pain?! Maybe I should become a meterologist. 

So, just a reminder, I would love to hear your ideas and how you creatively answer people's questions? 



  

Believe it or not, I have completed my second week of school.  Yes, our crazy school schedule had us start school on August 1st.  This is my first year at a public school and my first year in high school.  My parents kept me at a small private school for years, because of my health issues and the school's ability to accomodate my needs, but I was ready to try to the big public school. 

It has been quite an adjustment, because before I was in a smaller building with only 30 kids per grade, and now the school is huge and I have 450 in my grade - more than my entire old school.  When we started the process to make the change, my parents ran into a ton of bureacracy.  It was crazy, because the first person my parents talked with said that I had to take the regular PE class.  I know from my sister, who had the class last year,  that they run every day and I can't do that.  At first, we were told that I could just sit in the class everyday, that was his 504 Plan accomodation for me.  BORING!!!

Thank goodness for the assistant principal of the school! She was great and really helped make my adjustment easier.  Simple things like making sure my locker was close to most of my classes and organizing my schedule so that I don't have to walk all over the building back and forth all day, but my schedule allows me to walk progressively with my last class ending near the bus.  They have been able to make adjustments to my PE class to meet the state requirement for graduation, yet allow me to do weightlifting, when the other kids run.  I surprised myself by the weight I was able to bench.  I guess the months of crutches and swimming paid off.

People without arthritis don't understand how these small changes can make a huge difference.  They don't understand how simple things can be much harder and exhausting to someone wracked with pain.

My homework load has already been a bit much, but thankfully I am feeling well these days!  Even so, it is hard for me to get excited about homework - just a "regular" teen who happens to have arthritis.

JA Camp was AMAZING!  I made tons of new friends, saw old ones, and had a great time.  We played dodgeball and kickball, climbed a rock wall, did archery, went to the pool, had a Luau, drumming, and played a modified version of Quidditch from Harry Potter. My counselors and cabin mates were wonderful!

One of the funniest times was when Rob Shaw, Vice President of the AF for GA and TN, visited camp, and they made him shake his "booty", while we all chanted and sang.  Now Rob is really cool, but this surprised me and had me laughing really hard! 

Another funny time was  when "Team Awesome" went up against the "B3 Barracudas" in dodgeball.  "Team Awesome" included "R3" girls, one counselor and two staff members.  The "Barracudas" had "B3" boys and three staff members.   I was on the "Barracudas" team.  The competition got down to two staff members, named Hayes and Luke, against Jason, Jared and me. We beat them 5 games out of 7.  This was one of my favorite parts...to enjoy the competition against counselors. 

Camp was not about arthritis, but rather it was about having fun with friends, inspite of all of us having arthritis. There was a special connection and understanding; eventhough, none of us needed to talk about it.. I stay in touch with some of these friends throughout the year.....and there were no over protective parents reminding us what we should and should not do.  I played Quidditch and paid for it later, but it was all worth it!

If you have never been to a JA camp, I highly recommend that you contact your local chapter and check it out.  


   


  

Have you heard the phrase "Christmas in July"? 

Well, apparently the Arthritis Foundation has.  They are already gearing up for nationwide Jingle Bell Run's this holiday season, and....if you register before July 31st, you are entered into a drawing for an iPad.  That sounds like Christmas to me. 

Check it out at :

http://www.arthritis.org/jbr-locations.php?state=

My family has committed to be there and started a team for our local event, following our theme last year - the Grinch and the Whoo's from Whooville - because having arthritis can make you feel like a Grinch.  My mother even bought a Grinch t-shirt for me. This year, there will be fun holiday activities following the run/walk at a really cool. popular tourist location.

While, I really want to win the iPad, you should consider registering and starting a team of your friends and family.  It is a neat way to start the holiday season and festivities - fostering hope.

So, are you registered yet?

By the way if you win the iPad because of my advice, please feel free to send it to me.  Just kidding.

So, the countdown is on...in less than two weeks, I will be joining my fellow JA friends at camp. 

I remember the first year that I went, not long after I was diagnosed, it was so great to finally realize that there were other kids with this mysterious disease that I had, especially because at 7, I was still trying to figure out what it really meant.  The best part about the camp experience was that while we all had JA, we did not have to talk about it.  We could just make new friends, hang out, and have fun! It was great!

No one asked me why I took so many pills, used ice packs or walked differently.  The staff knew just how to help us, so that we could focus on just enjoying the experience and appreciated our new friends for exactly who we are.  I have kept many of these same friends years later, and I am looking forward to seeing them again soon.

I am getting older and while this may be my last year or two as a camper, I am excited to continue my involvement with JA Camp in the future as a leader in training, counselor, etc.  I love younger kids, and I love having fun!  Hey, if I invest in someone younger than me and encourage them like others have done for me, all the while having fun.....sounds like a really good idea to me.  Don't you think so?

So, what about you?  Are you going to a JA camp in your state?  

You may be wondering who is this guy and what makes him interesting?

Well, I am Zach, a normal teen guy, entering high school this year, who just happens to have juvenile arthritis.  I was diagnosed with multiple epiphyseal dysplasia (MED) when I was 6 years old.    The doctors would tell you that this means more than one major joint in my body has dysplasia.  But in teen speak, that means that both of my hips joints are eroded and they hurt all the time - some times more than others.

Last year, my parents and I flew to Baltimore, Maryland three times for evaluation and two surgeries, which have really helped my pain and got me off of crutches.

But like I said, I am a normal teen guy, whatever this means.....I like swimming, riding bikes, rock climbing, tubing, playing guitar, hanging out with my friends, youth group, girls, video games, movies, NCIS, Criminal Minds and eating. I don't like homework or reading; although, my parents make me read.   

Why am I blogging? 

Well, I want to connect with other teens with juvenile arthritis (JA) so that we know we are not alone facing this disease.  There are others like us, who understand. I also want to get more teens involved with fighting this disease– There is power in numbers.  We can be a part of the solution - a part of finding a cure, if we all work together.

Together we can support each other, communicate our fears, concerns and struggles. We can learn from each other and work together to fight this disease, and we can help others understand that despite our physical condition…we are NORMAL!!! 

We cannot let this disease win!

Who are you and what is your story?