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.
5 comments:
Hello,
I am currently in my second year of Sixth Form and studying design. The product I am aiming to make as part of my final project is an accessory that could be attached to the fret board on a (half size) guitar in order to make it easier for children with rheumatoid arthritis to hold the strings and learn the chords, hopefully with minimal hand and finger movement.
I came across your blog throughout the research stages of my coursework and your opinion would be very helpful towards my work.
I was wondering if you have any ideas towards my product, how it could work, or any things I should take into consideration when designing a product for children with juvenile rheumatoid arthritis.
Many Thanks,
Emma McBride
-If you could respond via 12mcbridee@stdoms.ac.uk I would be very grateful!x
Hi, Emma, I'm so glad you found my page, but I am probably not the person to help you. There are many different presentations of Juvenile Arthritis, and either Anna has a very mild presentation, or its very well controlled by her medications. She does not experience pain, and she does not have limits to her range of motion. She hasn't experienced arthritis in her fingers (at least not yet). There are children with arthritis who DO have such issues, and I know many of those parents are active on the internet with blogs, etc. I'm hoping that you'll be able to find some of them to help you.
Hi Tammy,
I have been reading through a couple of different blogs and I have come back to your twice, so I thought I would reach out and say Hello! My daughter, Bella was diagnosed at the end of August with Juvenile Idiopathic Arthritis and we are getting checked in November for Uveitis. Bella is 10 years old and very active (when she can be). It took us 3 years and many doctors later to finally get a diagnosis. We have begun our treatment plan, which seems to be a slow process. We are working with Penn State Hershey Doctors and have finally have a great team working with us. Bella and I began a blog for her for us to educated our friends and family. I also like it for Bella to vent her frustrations and victories. I have been going through your posts a little each time I visit your page and see that we have a long road ahead of us but it seems hopeful from your posts.
Take care!
Jamie
Dear Jamie, I apologize profusely for not seeing and publishing your comment earlier! (Gmail started putting e-mails in categories---and I forget to look in my one folder for new e-mails!) Anna is also treated by the great team at Hershey Medical Center. I'm so glad you found my blog. If you are on Facebook, I will try to contact you there. Thanks for your kind words!
To Jamie again---Jamie, I see that you're on Google+, but I use a different gmail address, so I haven't been able to connect with you that way. Would you mind e-mailing me at scottandtammyz@gmail.com? Or look me up on Facebook by searching for "Tammy Barger Zeigler"? I would REALLY like to connect with you. Thanks!
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