Well, this morning found Zachary & I visiting his dermatologist. Just a re-check from his last appointment, nothing new. I had mentioned that I had tried to fill his prescription for his Clobex shampoo only to find that we had a $325 co-pay!!!!! I almost died! I was actually looking for an alternative when his doc came out and handed us a whole box of samples! Of course, we discussed the possibility of psoriatic arthritis. So far, the only pain that Zach has related to us comes when he's not getting enough attention. It's never for long, and when I look the area is never swollen. That said, I can't say that the possibility doesn't worry me a great deal. He's doing well for the moment, under decent control. She gave us some Vitamin D cream to try, too.
I found out something interesting from the doctor. She had asked me if our rheumy had gotten another rheumy in his office yet. Apparently, he has been trying for years to convince USF to add another doctor to help take some of the load off, but they won't do it. I really don't understand the whole deal with doctor's sometimes. There is a severe shortage of pediatric rheumatologists in the country. That is huge because often the juvenile versions of these rheumatic diseases is totally different than the adult forms. There are 12 states that do not have a pediatric rheumatologist. In fact, Montana, Idaho, Wyoming, Nevada, North & South Dakota have none. Florida has 4, I believe. Our one in St. Petersburg, 2 in Gainesville, and I believe one in Miami. Florida is a big state. Gainesville is 3.5 hours away from St. Pete. I'm not sure how far Miami is, but Fort Myers is 3 hours south of St. Pete, and Miami is still quite a bit further. Almost 300,000 children nationwide have been diagnosed with rheumatic diseases, (more than juvenile diabetes, sickle cell anemia & cystic fibrosis combined) and USF doesn't see the reason to add? Now, maybe I have it wrong. Maybe they can't find another pediatric rheumy. That I could completely understand. But I'm pretty sure that she said they won't send help. That is just messed up. I really feel for our doc. He is always at work late, he is pretty much the only "on call". I know he said the state pays his salary so that's kind of nice, but that office needs more help! They need more people manning the phones, a better phone system, at least one more nurse and another doctor. I'm so angry about this that I may write to them.
On our way home I got thinking back. It used to be that we couldn't leave the house without a crisis. We had things happen to us like someone throwing up every time we went somewhere (Zachary puked at every extreme emotion and Emily would cry & cry until she threw up- often nothing could console her). I can't tell you how many times we had to pull off to the roadside because of one or more reasons. She would scream every time we went anywhere. I understand that now. I was a wreck, the kids were a wreck. I would be the one with 2 screaming kids leaving Walmart and have the buzzer go off, not be able to find the receipt because of juggling screaming kids and have the security guard harrass me. (Yeah... that happened.) When they were really little, Zach would cry because Emily was crying. He was such a chillin' little dude, but when she got going it would really upset him. They never screamed because they wanted anything. I'm guessing that even way back when it was her arthritis. She'll get a little red, but she doesn't swell outwardly the same way that some kids do. In any case, I was thinking how greatly our rheumy, Methotrexate & Enbrel have changed our lives, how much easier it seems in so many ways now, & how blessed we are. We truly are. I always knew that she wasn't crying "because she was bad". I don't believe that children are bad. I think that bad children are created. Either way, I always knew it was different with her. I just didn't know why. It's so funny to think back. Back to when we couldn't go anywhere without tears and vomiting. (Good times!) I couldn't enjoy my family then. It was really hard to. Already tired from a hard day at work, coming home to screaming was not much fun. I know that I can't change the past; all that I can do is learn from it and try to understand it. I try really hard to do just that. I can, however, try to control some of the future.
Never having followed politics AT ALL, never having found any interest in politics AT ALL, I am pleased to announce that I have a meeting with Congressman Gus Bilirakis on September 13th! He has voted against the Arthritis Prevention & Control Act in the past. Here's hoping I can change his mind! ;) I know that it may take some persistence, but I am willing to try. I'll keep ya posted :)
*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!
Monday, August 9, 2010
Funny how things change
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