Well, I really wanted to get on much earlier and write this, but somehow the time just blew by tonight.
Most of our family had a cold/throat thing going on this week. The little people's asthma has been acting up, too. Emily told me a few days ago that her chest felt heavy. That scared me! When she had pnemonia in 2007 I had no idea that she was sick. I had her checked out because usually she & my son got sick in pairs. Fortunately, she's doing ok. This hasn't made her condition any worse, either. I can see the effects of her medicine not working more & more now. She had two baths tonight after I got home from work around 5. Granted, she's now lost two doses of Enbrel in preparation for Orencia.
Monday morning we meet with Congressman Bilirakis! I am very excited about this. He has not been supportive of the Arthritis Prevention & Control Act. Let's see if we can change that! : ) I'm taking both of the little people with me. This could be a wonderful educational experience! So many people that had JRA as children have said that because of their parents advocating on their behalf they learned many lessons that other children don't get to. There is so much that I can teach my kids about our political system through what we can do for the Arthritis Foundation. I can also teach them how to advocate for themselves. Someone else has to help these kids. People don't know that arthritis can kill children. The systemic form can also have a complication called Macrophage Activation Syndrome. MAS is excessive T-cell activation that causes overwhelming inflammation that can be fatal. Arthritis does not only affect joints. Why not? Where it affects joints is in the lining, the synovial fluid in between. Well, the heart has a lining. Other organs have linings. That is why the eyes can be affected. (Uveitis) I thank God daily & I feel so blessed that Emily is NOT systemic, but I also cry for the children that are. So many people don't know these things; they think that it's just a couple of painful joints. There is so much more to it than that. It's a rheumatic, auto-immune disease. Not just a little wear & tear. I really wish they would change the name to something else instead of Juvenile Arthritis. Maybe then these kids would get more help. I'm willing to do my part.
The other exciting part is that after meeting our congressman we will head to All Children's to start IV Infusions of Orencia. I was terrified when I found out that it can take 3-6 months to kick in. With the way that she turns purple in 95F weather I can't imagine how bad this coming winter would be with a med that had lost its effectiveness. I managed to get a rush appointment at her rheumy's (thank you, Michelle!). Her doc agreed that it is time to make a change. Enbrel has been amazing. Enbrel gave her a LIFE back when she was at her worst with this disease. Changing meds is hard for her; it's hard for me, too. I don't like waiting for something to kick in, I don't like uncertainty. She was completely terrified to start, but thanks to the awesome nurses in the Infusion Room at All Children's Hospital the fear is less. The one that was with us through most of our visit (when Em broke down completely, tried to run, wouldn't talk to anyone, shut her eyes tightly, & tried to eat her fist) gave her an IV bear. This thing was sooooooo cool! It came with everything needed to "give the bear an infusion & after-care". How cool is that??? That helped her to figure it out and make her peace with it. It also helps that instead of having lab work drawn every six weeks, two shots of Enbrel a week, and Methotrexate every week when her white counts would let us, she will only have one dose a month after the first month. They can draw her blood then, and give her one shot of the MTX. Since she's off of the MTX more often than not because of her white count, her doc switched her dose to one shot every other week. I hope that will do it. She needs it, but we can't have her running around with no infection fighting ability all of the time. It's a delicate balance. Anyway, they plan to have a therapist there to talk to her for her first dose. Many children have the same fears that she does. They say we'll only be there for an hour, and it has almost no side effects. I just want her to be able to move freely again. For the last few months she's been so stiff. She has a hard time getting up from the couch, and the baths are often. The pain hasn't been remarkable to her enough to say something, but that means nothing. She often doesn't complain. I'm just happy to be able to do something proactive. I hate just sitting back helplessly. Wish us luck and keep us in your prayers!
*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!
Sunday, September 12, 2010
Monday will be exciting!
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