A friend posted recently about an email she received. Apparently the sender was questioning whether my friend’s child was truly sick, while at the same time offering advice on how to treat this “imagined” illness.
Charlotte’s can of whoop a** for for the day: 1) Do not email me a nasty email b/c you know many of my friends will set you straight if you say it on my post. 2) Do not accuse me of only posting things for sympathy and that if my kid was really sick, I would have rushed her to the ER. Some parents know that if you get dressed and prepare for the ER, you don’t have to go. If you wait and see, you leave in a rush and it’s insane. 3) Do not say that if I didn’t give my child Benadryl and other “toxic, inhumane chemicals” that she would be so much better. The toxic chemicals of vaccines probably made her body spin out of control. The toxic, inhumane chemical I inject in her arm every week has given her a much better quality of life. The toxic, inhuman chemical I gave her last night was to clear her nose and such so she could go to sleep. 4) Do not tell me that if my kid was really as sick as I claim, that I wouldn’t expose her to the germs at a public school. She deserves and needs a “normal life” and if that means public school, then so be it. 5) Do not tell me to get a job so I can afford private school or I should homeschool since I don’t seem to do anything anyways. Shall I go on? I will leave this up so you can read it, apologize to me, then I will delete you. Shame on you!!!!!
Now I know lots of moms who have kids with juvenile arthritis. By and large, we are all trying to give our kids as normal a life as possible. Part of that “normal” is letting our kids do what other kids do as much as physically possible. That doesn’t mean they do it the same way, or as well, or as often, but they do what they can, and we allow it so they can forget for a while that they are sick.
Sometimes we feel like we are beating our head against the wall, and with some people we may as well be. We never give up trying to educate those that will listen, and trying to ignore those that won’t. But we absolutely will not permit otherwise sensible and caring adults to judge how we treat our children’s illness, and dictate what those children can and cannot do.
OK, I’m finished being mama bear. I’ll pull my claws in now. 
I think part of the problem is that moms are sharing so much with a varied audience. JRA moms don’t need as much info to understand the anecdotes, but friends and family who have never spent so much time in dr’s offices are taken aback by what we go through.
If you are going to ‘put it out there’, you need to be prepared to hear feedback, though.
Here’s mine
. I think you were given a gift when you son tested positive for food allergies. I’m sorry you didn’t take advantage of it and hope your family will be willing to give elimination a try. My non-JRA child was sicker from eating dairy than my JRAer has ever been (except for onset). She missed more school and activities and was miserable for months until we figured it out.
She was treated for sinus infections, had terrible headaches, eczema, asthma, and debilitating stomach pain. Her allergy tests were negative for food. No dr. could find anything wrong, but I was having to get her from school early nearly everyday and she looked horrible when I got there. I knew she liked school and it was taking a terrible toll on us all.
She was treated once again for a sinus infection and I sent yogurt for her lunch in case the antibiotic upset her stomach. She had been fine in the morning, then called me sick after lunch. I was desperate to find an answer, and that just clicked – DAIRY. I picked her up and asked to try no eating dairy for one week. She said okay, but really only agreed to one week because it sounded so daunting.
We started that Friday afternoon and she had a good weekend. I was nervously waiting for the phone to ring to get her from school all day Monday, but the call never came. When I picked her up, she ran to the car with the biggest smile I had seen in months and said, “It’s the dairy! I know it! I don’t remember feeling this good in a long time! A long time!”
And that day, in middle school, she gave up pizza and ice cream and so many other things that teens love. She was our biggest chocoholic, and that is gone, too (now we know why she looks so bad in all the Easter pictures). We had no test to prove it, but the allergist said “don’t look a gift horse in the mouth”. When I asked her why she never told us how often she had stomachaches, she said she thought everybody got them!
Diet change changed her life. I’m not saying it will cure arthritis (and our JRAer still eats dairy because we have never seen any similar symptoms in her), but I know it will help someone feel so much better in so many ways.