*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, May 3, 2010
Lab work & sinus drainage
Today was Emily's labwork day. With the meds she's on we have to have her labs drawn every 6 weeks. It doesn't matter how many times we go... she'll never adjust. It used to be that she would scream as soon as she saw the building. It's easier now that we go to the children's specialty center. Now she doesn't start to flip until they start cleaning the area. Then she starts to panic, and I feel horrible. I know it's just simply something that we have to do, but hearing her cry and scream makes me want to run away with her and never go back. It makes me want to cry with her, at the injustice of her disease. Especially when she's not feeling well, which would be today. Her sinuses are still draining, and she just doesn't feel great. For once she actually told me that she doesn't feel well. Usually I have to guess, then when I ask her she tells me "I dunno. How would I know?" Ummmm, yeah. I've had to guess with so many things. Then, from the immune suppressors she doesn't really get fevers. She and Zachary both had swine flu at about the same time. She got a little cough on a Friday afternoon. It didn't seem to be bothering her at all. By Monday, Zachary developed a cough, and then a fever that shot from 104F to 106F in an hour while I was on the phone with his pediatrician and the hospital. After he tested positive we had her tested. She was positive. I had no idea. No clue at all. She's just used to feeling miserable, so she handles it in a way that I will always envy. She just goes, like nothing is wrong. It always amazes me. My poor little boy! He is so sweet, so lovey and funny and smart. Yet, he'll complain that his leg hurts and start to limp around in a dramatic manner. He's such a sweetie. And so handsome! But it's hard for him. She gets more attention due to her disease. We try to balance it between them, but it's hard. Well, anyway, we will be off to the doctor's soon. I'm hoping this time that they just go for the Omnicef. We went from Augmentin to Zithromax last time, a step that seemed backwards and counter-productive at the time. I know, it's a game of going through the circle of antibiotics so you don't wear one out, and I fully realize that Zithromax is not nearly as powerful as Omnicef, so Omnicef is used as a last resort, but still... It's hard to be right sometimes.
Subscribe to: Post Comments (Atom)
Post a Comment