Monday, December 19, 2011

7 things I've learned in 7 years of living with Juvenile Arthritis

This week marks 7 years of JA for our family. J's official diagnosis came in March 2005 but it was Christmas Eve 2004 when the nightmare began. This photo of the kids was taken just a few days before J's knee swelled up to the size of a softball. M was about 12 weeks old and my picture perfect little family was about to be changed forever.

Over the last 7 years I've learned several things about JA. Of course, one of the obvious things is that kids do get arthritis but it is not the type of arthritis that you automatically think of when you hear that word. What kids get is autoimmune -- the result of a faulty immune system. It's not the same thing my grandparents had. Well, in my case we do believe my maternal Grandma did have rheumatoid arthritis.  

1) Kids usually don't "grow out of it." They can go into remission but that doesn't mean it's gone. This type of arthritis is autoimmune and it can pop up again at any time. If a child did grow out of it, chances are they did not truly have juvenile arthritis. Odds are they had reactive arthritis or arthritis caused by a virus. You cannot cure JA.

2) Go with your gut. If you feel your child is not being treated properly, get a second opinion. Aggressive treatment is KEY in getting this beast under control. Do I think J could have had it easier if she were treated properly in the beginning? Maybe. But I can't go back so I'll never know. I drove myself crazy for a long time trying to figure that out. All it did was cause me more heartache so I had to let it go.

3) Don't do it alone. Look for online support groups. Contact you're local Arthritis Foundation Branch so they can get you in touch with another family who has been there. Email me. I went years not knowing anyone who had a child with JA. Once I connected with other families and heard stories of other children I knew that we were not alone in our fight.

4) It's OK to cry. 7 years later I still do. Every med change, every new joint, every flare. In my case, J wipes my tears.

5) Everyone has an opinion. It's true. Once you tell anyone your child had JA you will hear about every "cure" imaginable. Most people mean well. Some will think you are doing more harm to your child by treating him with traditional therapies. Unless you live with this disease you will never understand the decisions we, as parents, must make. A lot of medications to treat JA are new. We don't know the long term side affects. But we need to decide early on the lesser of 2 evils. For us, it wasn't a hard decision. I couldn't let J go blind or end up in a wheelchair. We had to give her a chance at being a normal child. I pray every day that we are doing the right thing.

6) These kids are stronger then we give them credit for. I believe that only strong children are chosen to live with a chronic illness. That could be cancer, diabetes or in our case, juvenile arthritis. Between our 2 children, J is the stronger one mentally. Matthew would not do well in the situation J has been forced into. I know some children adapt better then others but the children I have met with a chronic illness are simply amazing. I've seen these kids get knocked down by their disease but stand back up, dust themselves off and keep fighting. They don't give up. Which makes it easier on the parents.

7) JA affects every family member differently. This is something that I have recently learned. I'm emotional. Everything I do is based on emotion. Rick wants to fix things but this is something he can't fix. Matthew sometimes feels left out. J misses a lot of school for infusions, PT and eye exams. Matthew has been to every type of appointment J has had except her infusion. It's too long to have him come with us and our clinic likes to have the longer treatments come in first thing in the morning. I'm not going to  pull him out so he can see what it's like. I have recorded J's day at the clinic for Matthew so he can see what it's like but he still doesn't quite get it. There are times when Matthew is upset because I can't afford to buy him something because we have several appointments coming up. Having a chronic disease is not cheap. The co pays, meds and the gas add up real fast. Being that we are a single income family we live paycheck to paycheck. I do what I can for my family but sometimes I hear, "If you and Jordan weren't sick...." For a 7 year old, Matthew does really well. He understand that this is not what we want. We would much rather be able to take a trip to Disneyland or Universal Studios then spend what extra money we have on medical stuff. It's not fun for any of us. And a vacation? We've never have a family vacation.

I can't say that things have gotten easier for us over the years but I can say that I know so much more about JA then I did. My goal over the last few years is to educate others. We've done that. Since Jordan's official diagnosis in 2005, 2 other family members have been diagnosed with RA, 1 being myself, and another with Sjogren's syndrome - another type of autoimmune arthritis. We also have family members with Crohn's disease, diabetes and Hashimoto's. All are autoimmune diseases. Some doctors say they aren't related but I think they are. If I didn't do my own research I wouldn't have even known JA was autoimmune. J's first rheumatologist didn't bother to tell me that part. I about died because I didn't know what that meant for her.

Our life is not what we expected but I honestly believe that we are meant to share our story and struggles to help others.

1 comment:

carrien3chicks.com said...

RA Warrior linked to your blog. I really appreciate your insight. I was diagnosed with JRA at age 14, 28 years ago. I know how hard it was and still is for my parents. You and your family are doing the right thing for your daughter.

As you daughter grows, so will your "relationship" with the disease. There may be a time she wants to stop meds, thinking she's fine. My parents were gracious enough to allow me to make those decisions. I eventually wised up and went back to the meds. I think it's a little bit of testing myself to see if I really had this disease or if it were in my head. My parents also allowed me to participate in any activity I we interested in. Again, it allowed me to see things I really could do, things I couldn't. One day I could play softball, the next I couldn't walk. Making those choice myself released my parents from anger and blame I could potentially place on them for restricting my activities.

You are also very right that she is strong! With that I will say when she says she hurts, you can know it's bad. I felt horrible making my parents feel bad for me. It brought a great deal of guilt to me for the time they had to take for my treatment, the money for the meds, the anguish they felt when I hurt. I don't know how you will navigate this with your daughter and whether she will feel like I did.

Lastly, I agree in the genetic issue. My sister was diagnosed in her 30's- probably masked as a young person. My mom has RA now as well, diagnosed a few years ago. A cousin was diagnosed with RA just a months short of 30. My daughter exhibits symptoms, exacerbated by gluten. She had a JIA diagnosis but staying off gluten has so far halted the inflammation.

Keep up the good work. You and your family can manage this and live a life that is fulfilling and full of hope. Blessings to you all!