Lucky

Juvenile Arthritis (JA): a broad term that encompasses all types of chronic arthritis in children including all the subtypes of JRA and JIA, arthritis associated with SLE, arthritis associated with dermatomyositis, reactive arthritis, etc.

Juvenile Rheumatoid Arthritis (JRA): The American College of Rheumatology (ACR) classification criteria that were developed and validated in 1972 by the ACR  There are three subtypes within this classification: oligoarticular (pauciarticular), polyarticular and systemic with further divisions within the first two subtypes. Reference: Brewer et al, Bull Rheum Dis 23: 712, 1972.

Juvenile Idiopathic Arthritis (JIA):  Classification criteria proposed by the International League of Associations for Rheumatology (ILAR) task force in 1995 that has seven subtypes: systemic, oligoarticular-persistent, oligoarticular-extended, polyarticular-RF (rheumatoid factor) negative, polyarticular-RF positive, enthesitis-related arthritis, psoriatic arthritis, and other (undifferentiated) arthritis. Reference: Fink CW, J Rheumatol 22: 1566, 1995 

-definitions copied and pasted from www.arthritis.org.


Asking yourself why the title "Lucky"? Let me explain. 

My son is not 100% healthy. Oh he appears to be from the outside. On the outside, he looks like a regular child, a "normal" 7 year old boy. Too many people think that he is healthy because he runs, jumps, plays, and moves around like a healthy child. Guess what folks? He is only able to do those things because of the meds he is on. Miss a dose of the methotrexate, trust me, he'll pay for that in a day or two. I know because he has missed a dose and 2 days later he couldn't walk because of the flare up. Did you know that methotrexate is CHEMOTHERAPY? Yup. It is. And Humira? The other shot he gets on Friday's? Check out this link http://www.humira.com/JuvenileIdiopathicArthritis/Default.aspx . Not into reading all about it? No worries, let me point out the main thing I want to share with you, "Humira is a TNF-blocker medicine that can lower the ability of your immune system to fight infections." Oh and this too, "There have been cases of unusual cancers in children and teenagers using TNF-blocker medicines." CANCER. Did you see that? It said C.A.N.C.E.R. Patrick and I are giving our son something that can cause CANCER, oh and not just cancer but UNUSUAL cancers. Scary isn't it? Glad you aren't in my shoes? Or Patrick's? Or even Jackson's? Trust me when I say that if there was something else out there that he could take that would work just as well, he would be on it. The sad truth though is that there isn't.

But Jackson is lucky. He is lucky because we have found what works for him. He is lucky because his "cocktail" of meds has helped him to be able to run, jump, play, and be "normal" like any other 7 year kid. He is lucky because he doesn't have to go to Gainesville every week, every 2 weeks, or even every 4 weeks. He is lucky because the last time we were there, they took his blood work and every thing came back good. That means that his levels were where they should be, despite ALL the meds he is on. Yes, Jackson is lucky and after reading about what his friends with JA are going through, I am thanking God right now. 

Jackson has a school that understands and "gets it". I haven't experienced what other parents in my JA family have. I haven't had to miss work like so many moms and dads because of a bad flare, one so bad the child can't move because it hurts so much. I haven't had to explain how my child is perfectly "fine" one day and damn near inmobile the next. Jackson has not had to use crutches or a wheelchair. 


JA family, I love each and every one of you. I pray that your children, and mine, will one day have a cure. I pray that the meds don't cause more harm than good for our children.
 I am here for all of you. 

And in the meantime, I will continue to thank God (and my own personal angel) that Jackson is as "healthy" as he is today. 


-Also, please note that this blog is not a "rub it in your face" kinda thing. There is a part of me that feels bad that my child is doing so well when so many others are not. WilmaSue told me to never feel that, be thankful for how well he is doing.  I want all his friends to feel the way he does everyday. I want all his friends to be able to run and play and not have a flare the next day. I realize how "lucky" we are that he is feeling good, and like WilmaSue told me, I am thankful.