I keep this blog in part to easily update family, friends, and other JA parents (and any other interested persons!) on how Anna is doing on her journey with Juvenile Arthritis. Since Anna was first diagnosed in 1999, the terminology has changed. I believe that now children are diagnosed with Juvenile Arthritis, or Juvenile Iodiopathic Arthritis, et. al. However, I created this blog a long time ago, when people referred the disease as Juvenile Rheumatoid Arthritis. Hence the "JRA."
Tuesday, April 24, 2007
Friday, April 20, 2007
Well, a reprieve of sorts. I was rather nervous sitting and waiting for the verdict on Anna's eyes this afternoon, and I didn't take any reading material today. Spent all the "waiting" time praying for peace and acceptance of "wherever we go from here.". (I know so many of you have been praying, and I know God answers prayer, but I also know that He allows us to travel some journeys for many purposes, so He doesn't always---in fact, rarely does He seem to save us from the tough times and sometimes the nightmares of life.)
And the verdict from the ophthalmologist was . . . ."Better." Not a "let's celebrate, WhooHoo! better", but more like a hesitant "better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin), and we get to stretch out the time between appointments to THREE weeks instead of one or two (now I am definitely celebrating THAT fact!).
And the verdict from the ophthalmologist was . . . ."Better." Not a "let's celebrate, WhooHoo! better", but more like a hesitant "better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin), and we get to stretch out the time between appointments to THREE weeks instead of one or two (now I am definitely celebrating THAT fact!).
Wednesday, April 11, 2007
Well, last appointment was Friday (April 6). Anna's eyes are slightly improved, but not nearly where the ophthalmologist wants them to be. He had a lengthy (for him) discussion with me, and he really feels that we're heading towards Humira or Remicade. Neither of those sounds very fun for me to explain to Anna (Humira injections really hurt, and Remicade means being at the hospital for a few hours every 6-8 weeks for an infusion.) I'm also nervous about the cost---what insurance will cover and what we will be expected to pay (for either one of the options). The Cyclosporine itself is very expensive, although once we paid our prescription deductible, it's down to $35.00, so that's not too bad (when you consider that the retail cost of 100 mg for 30 days is over $191!).
I'm at a point (especially last week) when I really didn't want to think about arthritis or anything associated with arthritis. In my several-times-daily talks with God, I keeping telling him, "I DON'T LIKE THIS PART OF THE JOURNEY!" He hasn't promised to take it away, but He keeps telling me that I'm not alone---that's He's still right by my side.
I know down deep inside that once Anna gets used to whatever might be next, she'll be courageous and accepting, even if she doesn't like it. That doesn't stop any of us from just being sad that we even have to think about some unfavorable options (besides the fact that she probably will still need the Methotrexate injections and some of the Cyclosporine also, to start out with, as per the explanation of the ophthalmologist.) Does anyone with a heart ever want to tell their child that they will have to regularly receive a painful shot or spend hours at the hospital every few weeks with an IV dripping in? I'm still going through the grieving process and will eventually get to the point of grudging acceptance and then I'll be able to put on my strong and courageous face for Anna's sake.
I'm at a point (especially last week) when I really didn't want to think about arthritis or anything associated with arthritis. In my several-times-daily talks with God, I keeping telling him, "I DON'T LIKE THIS PART OF THE JOURNEY!" He hasn't promised to take it away, but He keeps telling me that I'm not alone---that's He's still right by my side.
I know down deep inside that once Anna gets used to whatever might be next, she'll be courageous and accepting, even if she doesn't like it. That doesn't stop any of us from just being sad that we even have to think about some unfavorable options (besides the fact that she probably will still need the Methotrexate injections and some of the Cyclosporine also, to start out with, as per the explanation of the ophthalmologist.) Does anyone with a heart ever want to tell their child that they will have to regularly receive a painful shot or spend hours at the hospital every few weeks with an IV dripping in? I'm still going through the grieving process and will eventually get to the point of grudging acceptance and then I'll be able to put on my strong and courageous face for Anna's sake.
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