Monday, January 28, 2013

From the Voices of CHILDREN with Juvenile Arthritis

Families with children who are journeying with Juvenile Arthritis are some of the strongest people we know.  Many of these amazing families shared with us what their children have to say about JA and gave us permission to post their words on our blog.  Thank you to each and every one of you for opening your heart so others may better understand what you go through.  Names have been removed to protect privacy. 

These children’s voices speak volumes…
·         Some days you ache really bad and some days you feel great.
·         Some kids have really bad arthritis all the time and we need to help them.
·         When you have arthritis, you get to go to a bunch of events that are only for kids who have it. You also get to meet a bunch of different doctors and nurses who are really nice. You can make different friends than you would make if you didn't have arthritis.
·         I like to go to the children's hospital, because I can have sushi for lunch.
·         I want more people to know that a lot of kids get it and it's not JUST arthritis. It is more serious than people think. Not that most people realize that kids get it.
·         The BEST thing about JIA is Camp Boggy Creek.
·         I really wish people could understand the amount of pain some kids suffer.
·         People seem to think that because we are children that our pain isn't as bad as it is.
·         The best part about JA is my JA Friends; they are like brothers and sisters who really "get" me.
·         It hurts and I feel yucky.
·         I gets a lollipop after my needle bag (infusion) and Santa comes to the hospital because I is special.
·         It is cool to go to Camp Boggy.
·         I want others to know that just because we have this disease, it doesn't make us WHO we are, it's just a part of us and something we deal with every day. Don't look at us differently or treat us differently because of this. We are people with our own personalities and we are fighters. We are in pain every day and we still get up, put a smile on our face and go and do things that "normal" kids do.
·         We can laugh, joke and have fun just like the rest of you so don't ignore us or make fun of us because you think we are different. Talk to us and be our friend and you might find that you just found the best friend you'll ever have...
·         And the Best thing about it.... As we get older and start accepting that we have this disease and gain a little more confidence, we find that we can do things we never thought possible, we meet people with the same disease or something similar and find that we aren't alone and eventually realize there is a purpose for us and when we find that purpose, you feel really good about yourself whether it is helping people, raising awareness or just making someone smile because you are smiling despite the pain and agony you are feeling.
·         I love going to her eye Dr. because I like to read the letters.
·         I hate shots; it’s the worst.
·         We talk about all the other kids who have arthritis and pray that they all feel better!!!
·         I miss school.
·         Sports hurt now.
·         JA kids are compassionate, sweet and caring!
·         Even though there is a smile on my face, I'm in a lot of pain.
·         It's hard when I can't keep up with my friends.
·         The best things about JA are new friends who also have JA at Camp Boggy.
·         You get to skip PE.
·         People shouldn't just think you can't do anything just because sometimes you are in pain, 'cause sometimes you are not.
·         You can go to fun places like Boggy Creek and if you are in your wheelchair you get to go to the front of the line at the parks. (Disney, Legoland, etc.)
·         I wish others knew the reality of JA and just how greatly it can impact the lives of those who battle it daily... Just getting up and out of bed can prove to be an arduous task.
·         And I think the best things about JA are derived from what we learn from coping with it... Tenacity and empathy are two of the most glorious gifts adversity can offer.
·         Arthritis took away my high jumps and fast running.
·         Shots on Thursday.
·         Cookie.  Juice. J
·         There is no magic cure, drink, or food that CURES this disease and even the medicines our doctors give us is not a cure it is a treatment.
·         The BEST thing about JA is how it has shaped and changed my life and myself. I would not be who I am today if not for my arthritis, and I like myself.
·         Arthritis is a disease that does not care what age you are... anyone from an infant to an elderly person can get this disease.
·         The best thing about having JA is going to conference and meeting other kids who also have this condition.

·         We have wonderful friends and are able to help newly diagnosed.
·         It is not just bad to your bones; it affects other organs and your heart.
·         JA can affect any age.
·         Sometimes when you have JA you can also have other autoimmune issues.
·         Kids get arthritis too!
·         I have met a lot of cool people.


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