Following are a few posts in my JA parents’ board on Facebook (names have been changed):
“Insurance is denying Remicade the doctor and myself are appealing but in the meantime he is putting her on Humira shots. Her doctor has said it burns and is giving her a numbing cream before she gets the shot but I know this is not what he had wanted to do so I’m uncertain of things.”
“Hi, my name is Angelica and my daughter Christie was diagnosed with SJIA [systemic juvenile idiopathic arthritis] on 5/14/12. She is 3 years old and is a blessing in our family. She started with a week of high fevers and then the rash on the 7th day of fevers and that is when we were admitted to the hospital. She was diagnosed after a grueling week of testing and we left the hospital after 30 days. It was quite a trial on our family and I see that it will continue to be. I also have a 1 year old daughter (we celebrated her birthday in the hospital) and a 12 year old son. Christie is currently taking Prednisone, cyclosporine, and Actemra infusions every 2 weeks.
I have read through a lot of the posts on here and my heart hurts knowing that your children have gone through so much and also found comfort in knowing that we are not alone in this battle.
I am still trying to make myself believe that my beautiful little girl has this horrible disease.”
“Well today is a hard day to go thru,Last year on this day was Della’s very first small fever that changed our lives forever.Its been a very hard and stressful year for my wife,my 8 yr old son,and myself,but unfortunately it’s been a nonstop,painful,and challenging year for my baby Della.Shes nowhere close to any kind of remission,has lots of health issues that are still trying to be treated,and has been robbed of her childhood at 6 yrs old.But she makes me proud every single day going through all she does and still has a humongous heart and has not lost that big,inspiring smile that she was born with.”
“We’re going to doctor Sunday/Monday. Brittany had her first regular dose of Relonicept today, first after the loading dose. Going to ask about vasculitis, wheelchairs/strollers. Bunch of other stuff I can’t remember. I’m tired. Was up half the night not well because b gave me the bug she caught. She was up 130a to 630a the night before. This week did not turn out the way I planned…. at all. Good news: she got over it quickly ♥ and got an electric bed for her for free! (helped a friend who’s mom got and updated bed). Brittany was in her toddler bed still because she’s so small and I couldn’t really afford a new one.”
“Only you guys will understand how frustrating this was. I called e’s orthopedist today because she is refusing bear weight at all. The nurse returned my call and asked if I had ever just tried giving her Motrin for pain. I let her know that Elaina has been on either motrin, indocin or naprosyn around the clock since may of 2010… I am not stupid lady… I know the difference between my child needing a little advil and when something is wrong. Her dr did call back and said sorry but she is too little and too weak for crutches so ice her knee and carry her or put her in her stroller for the next 4-6 weeks!,! Yikes!”
Yes, these are typical comments made by JA parents all over the world every day. Even though Marty hasn’t had these exact problems, I can still relate to each one. I found out this week that 50 children die from complications of juvenile arthritis every year.
How can people still say juvenile arthritis is no big deal?