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, February 05, 2017
A Spoonful of [Hershey's Syrup] Helps the Medicine Go Down . . . .
Lord, I come, I confess Bowing here I find my rest Without You I fall apart You're the One that guides my heart
Lord, I need You, oh, I need You Every hour I need You My one defense, my righteousness Oh God, how I need You . . .
Jesus, You're my hope and stay*
I'm learning to not be totally devastated when the "game" of controlling arthritis and uveitis totally changes, when most of the cards to help win the game (is there ever a winning of this game?) are taken off the table. Maybe it helps that Anna has now taken control of her medical appointments and medications. I'm now more of an observer and coach on the sidelines than one of the active players. Maybe it helps that even when Anna has moments of describing the pain in her toe as a "7" on the scale of 1-10 (with her reminder that she hardly ever registers pain with her arthritis), that's only a momentary exclamation of her reality in the middle of a conversation mostly filled with happiness and excitement about college and some of her classes, about a book she's reading, and some of the professors, and an alternate chapel she's attending. She is doing well with not allowing a chronic disease to control her life or define who she is.
Anna asked me on Thursday (on the way to an appointment with the rheumatologist) if I was okay with NOT coming in the exam room with her. She's an adult, so what can I say but, "okay"? She wanted to talk to the doctor herself, and had been researching and thinking about the best way to "articulate" (her word) to the doctor her desire to get a cortisone injection in her right toe, which has been causing her many problems. (She wants to go running for some exercise, but the toe hurts too much. I asked if she could go for a swim in the college pool, but she said it still hurts then, because she does need to stand in the pool sometimes---and then there's all the walking around campus for classes and work and meals.)
Anna did give me a rundown of the appointment as soon as she reached the waiting area. The results of that doctor's visit did change the "game" for Anna. We had been grateful that she could still be on Methotrexate, but now her liver enzymes are elevated, and she can no longer take the Methotrexate. The rheumatologist wasn't able to give Anna a cortisone injection into the toe---she first wanted xrays taken to be sure of what's going on inside that swollen and painful toe. And she also said that she can't do an injection into the toe in the office, because the joint is so tiny and an injection would have to be precise. Anna was given prescriptions for a 7-day dose of the dreaded oral Prednisone. And for the long term, a 'script' for Plaquenil. Anna was on Plaquenil probably over 15 years ago, and it wasn't effective for her then. But Anna did not remember that she had been on it before, and I was not in the room. So we will give it another go and see what happens. I did remember that when she took it before, the doctor and pharmacist both warned me that it is a very bitter pill to swallow. I remember mixing the bitter compound with equal parts of Hershey's syrup in an oral syringe to get it down. So when we stopped by Target to pick up the medications, I also purchased a bottle of Hershey's syrup for her to keep in her dorm room.
Anna and I both separately have been "drinking in" Scripture. I started a new devotional plan in the new year and also began a 10-week Bible study, both of which keep me saturated in God's Word. This has been a blessing. I was reading last night a verse and a commentary which talked about how the Holy Spirit brings Scriptures to our minds which related to our current circumstances---part of how He works. I've experienced this especially this past week. Scriptures flooding through my head and heart (like a shower!) with assurances of God's love for me, and for Anna. Reminders of the Israelites who wandered in the wilderness and complained and didn't trust Him in spite of the tangible presence of God on their journey (the cloud by day and the fire by night) and the miracles He performed on their behalf. His reminder to remember His faithfulness in the past and His faithfulness to come ("The steadfast love of the Lord never ceases---He mercies never come to an end. They are new every morning! Great is His faithfulness."). Every day is a gift. And He continues to lead us in His love and faithfulness. Jesus IS our hope and stay on this unpredictable journey.
*Songwriters: CHRISTY NOCKELS, DANIEL CARSON, JESSE REEVES, KRISTIAN STANFILL, MATT MAHER