Saturday, February 12, 2011

Perspective for the Journey -- Another Update

After eight weeks of no appointments for Anna, she had two appointments this week--one (Wednesday) with the pediatric ophthalmologist and one with the pediatric rheumatologist (Friday). On Wednesday, the ophthalmologist found her right eye to be clear, and the left eye still with a trace of inflammation. However, he was happy with this! We continue with all current medications (which includes one Pred Forte drop to the left eye once a day). Her pressures are still satisfactory, although the first reading in the left eye was 20---but he had the assistant take it again, and it was lower. Anna told me later that she saw me wince when the assistant said "20." Anything 20 and above makes me a little nervous.

So then I took Anna to get labs done (no problem!---and out within five minutes. I remember the days when labs were traumatic for her, though!) Then back to Hershey on Friday for the appointment. Nothing out of the ordinary, there. No problems with joints.

I've noticed as Anna gets older, the she speaks up a whole lot more about what's going on with her body. (That's good! If she's beginning this at 13, by the time she's 18, she'll be well-versed and a "pro" at this!) Something new this time was a checklist of anything she may have experienced since her last appointment. I let her go over the list, and she did check "headaches." But she doesn't often mention that at home, so it could be related to anything, not necessarily the disease or the medications. She also told the doctor that when she opens and closes her jaw, she can hear clicking. He listened with the stethoscope against her TMJ, and then let Anna listen through the stethoscope, as well. :o) He thinks it's most likely the fact that Anna's TMJ's have a little damage, so the joint is not smooth, therefore it makes noise when it moves. Measurements of the jaw and of the legs show very little difference, and that's good, as well (even when Anna has active arthritis, she rarely complains of pain, so we rely on measurements to indicate any activity).

So all is steady on the arthritis "homefront" for Anna. Her doctor always mentions options if we should have to change anything, and Orencia is probably the next medication on the table. He does NOT like Remicade. He discussed a few of the pros and cons of Orencia and his preference for it over Remicade. (This is good for me to have the information ahead of time---I deal with it better if I can know and read up on things and mentally prepare myself for any possible next step.)

So that's the update on Anna. As I was thinking about what to post, I was remembering that some of the people who read this blog are parents who are relatively new to this "JA Journey" as I call it. Some have thanked me for giving them hope for the future. I remember when Anna was first diagnosed over 11 years ago. I sometimes feel like I'm on a long journey which has some rough patches, challenging spots, yet some other stretches that aren't quite as difficult (it's during those stretches where you can enjoy the view around you rather than focus on the rocky path). I was also thinking that being 11 years into this, I pause every now and then to read what "new" JA parents are writing in blogs and on Facebook, and remembering that I was once where they were, with all of the questions and unbridled passion to gather information on this disease, and worrying about anything and everything from joints to future damage to medications and their side effects. At first everything is very scary and worrisome. That's not to say that I don't have moments of fear and worry now, but not nearly so much as before. I've gotten my "sea legs"---the little ripples and waves don't leave me scrambling to find my balance. I still need to thoroughly and constantly think things over, but I've also learned how to balance out my worries and balance out family life.

I also remember that in the beginning, my bottom line was to find out as much as I could to help me make informed decisions and have a thorough understanding of the disease and the doctors' decisions and the medications, yet not allow the disease to consume our lives. I think I probably let it consume my life for the first few years, at least! (Even though I vowed not to.) It has been a learning process. After years of reminding myself, "Our lives are NOT all about Juvenile Arthritis---that's just a very small part of who we are as a family.", I finally believe it, and work to ensure that it's a reality---that Juvenile Arthritis does not define us.

Above all, my faith in a steadfast, loving God has kept me grounded. I still mull over life and death and diseases and other struggles in life, yet always come to the conclusion that every single day of life on this earth is a gift. No one is guaranteed a long earthly life or a happy earthly life or an easy earthly life (Jesus even said/promised, "In this world you will have trouble . . . "). But we ARE promised that God walks with us each day, revealing Himself (His character) to us in big and small ways. Throughout this journey (plus other family journeys throughout the years with young nephews dying and my older daughter's increasing food allergies and my son's speech issues), as I've struggled with questions, I've seen glimpses of God, and I've found my faith growing stronger. Even though the journey may be long and rocky, we are not without hope, and I love the fact that we (who have been at this awhile) can offer empathetic encouragement to those who are just getting started.

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