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."
Sunday, September 08, 2013
Moving Right Along . . . . at a measured pace . . . .
We've received good news since I last posted. Anna had an appointment with the ophthalmologist in mid-August. Her eyes remain clear of inflammation---for over a year now! Since last June! Oh, the joy of that burden of concern being lifted off of our shoulders (at least for the present!). I was asking the ophthalmologist some questions about Humria and such----because of Anna's TMJ issues, it's up to the rheumatologist to make decisions regarding the Humria and Methotrexate (the ophthalmologist would only recommend changes when Anna's uveitis was an issue---he doesn't prescribe systemic medications). And can I tell you that I really am not eager to make any sudden changes? We haven't seen evidence of any side effects from either of the medications (she's been on both for years), so I'm comfortable with them for now. Sometimes (for me, anyway) I like to relish the peace which comes from clear eyes and quiet joints---at least for a little bit---before gathering up the courage to make any changes, especially when it seemed to take so long (all those years of puberty) to get everything under control.
I feel like we're taking a measured approach to the upcoming orthodontics and reconstructive jaw surgery. I've begun making phone calls to determine insurance coverage for the orthodontics. According to my member handbook for the health insurance, my interpretation of the wording under "Patient Protection and Affordable Health Care Act of 2010 Amendment" would indicate that the orthodontics should be covered. Now it's a matter of getting the content of these two pages to the right people to debate my point. Still working on that. (Apparently, the Authorization Department only allows doctors to contact them and debate the issues----not the patient or the patient representative.) Measured approach . . . . constantly remembering that in the midst of this battle, God tells me "we are the aroma of Christ . . . " (2 Corinthians 2:15-16) so I need to be sure that I approach this in such a way that I am reflecting character qualities of God and His indescribable love for us (because that's what God calls His children to be and do), and not go to battle with sarcasm and anger. God calls us to KINDNESS, and that begins with me, in every situation. So in the words of Disney's Thumper, "If [I] can't say something nice, don't say anything at all." Still working on that (for those who know me well and know when I've said things I shouldn't have!).
So while we're working on the insurance end, I've also been in contact with Anna's pediatric rheumatologist to discuss getting an MRI before we see him in November, so that we can discuss the results, see if the disease is quiet in the TMJs, and see if we can move forward with the Lancaster Cleft Palate Clinic. He plans to schedule an MRI in October.
Until then, Anna keeps busy with cross country season, bassoon lessons (practicing for District Band tryouts), and youth group activities. (Plus waiting for her first nephew to be born any day now!) Life goes on, and we are determined that Juvenile Arthritis not define our lives---it's a part of Anna's life, but not who she is.
Subscribe to:
Posts (Atom)