For an RA sufferer, chronic pain is an obvious. However, if you are a parent to a child that has been newly diagnosed you may not understand exactly what it can do. Honestly, as a parent to a child that has been diagnosed for some time you still don't totally understand it, but if you are in tune with your child you will have a greater understanding of the days that he or she needs more help. I started thinking about this last night at the doctor's office. He had been looking way back in her chart to her first appointment when he said to me "She's not really PDD?" PDD stands for Pervasive Development Disorder, which is a form of autism. I will never know how long my child has had JA, but I can guarantee you based on the "PDD symptoms" that it has been a LOT longer than she'll be on record for.
Since her first appointment with her pediatric rheumatologist we have seen a HUGE difference. At that first visit he put her on Naproxen twice daily to control inflammation and pain. After six weeks he moved her on to Methotrexate. After six months we moved to Enbrel. That first year was emotionally exhausting for us all. I had thought that I had known my child so well. I thought that she was just not very strong emotionally, like she couldn't handle a lot. We tried hard not to upset her, but everything upset her. She would cry everywhere we went. Not just a little bit. She would cry the whole time. For a long time we wondered what we were doing wrong. Our other 2 children were quiet, well behaved. I always said that Em wasn't trying to misbehave. I knew something was up, but I had no idea what. The closer she got to diagnosis, the worse she got. She started developing crazy anxieties. Not crazy, but extreme. We could be driving at 50MPH down the highway & we'd hear a barking dog. She would freak out. Almost hyperventilate. Michelle at her doctor's office hit the nail on the head yesterday. I had said this in the past, but I like to be validated. She was controlling what she could control. She would grasp for straws to control whatever she could. When you don't know what's happening it's so difficult to understand. Just as difficult is coming to realize that you have no idea who your child is because her whole personality was a creation to cope with her pain.
That whole first year she was a different child daily. It was amazing, wonderful, and hard to deal with. She went from being the one that would quietly play and not make much noise to being the one that was tackling her brother & running around like a madwoman. These are the things that people that aren't experiencing this don't understand. It's not always easy being a parent to a child with these issues, but it is rewarding. We're working on stepping back right now. I don't want to do everything for her, & we've gotten her do to a lot of things for herself now, but I have the tendency to always ask "Can I help you?" "Do you need a hand?" I am working on not bugging her that way. She knows that she can always come to me, or Kevin. It hit me that I needed to step back after she told me "Mommy, if you died I couldn't live without you." Now, I'm sure that's not what she meant... because I do everything for her. Can't say I do that. However, I do have room to let her be a bit more independent, & to try to figure out alternate ways to do things. It's a balancing act. I can also tell you that this kid melts my heart. The days that she can't walk kill me inside, & the days that she's running makes my heart soar.
The other big thing is don't kid yourself. Flares will happen. I thought that Emily was so well controlled. Surely she would be spared. And she was... for about a year & a half. So many things can trigger a flare. Strep throat did it. And it was bad. She had three weeks in two months that she couldn't walk. She had one bad week, then a good week, then another bad week. After that she had another two good weeks before the last bad one. It's miserable as a parent to watch, but put yourself in your child's shoes. Can you even imagine hurting that much, that often? It just sucks, it makes me angry, & it's just plain wrong, but that's how it goes. Since I can't change it now, I can at least advocate for her to the best of my ability in any way that I can find. Getting involved can make a difference long term, but it can also make you feel like you're accomplishing something through your anger. And talk to your local Arthritis Foundation chapter. They may have people waiting in the wings to help, volunteers like those on our Florida Mom Squad that want to make a difference and help out. You can make a difference, too.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, July 2, 2010
Let's talk about pain (reactions)
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