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."
Friday, May 26, 2017
Something Different . . . . .
Disclaimer: Anna said that she gives my permission to share this! (And she laughed when I told her I was thinking of using this Norman Rockwell illustration.) We drove to Hershey yesterday so that Anna could get the steroid injection for her knee stiffness. While I don't have details, Anna had said that the doctor told her this was going to be an injection into her muscle and not directly into the joint. (I don't think Anna asked for the details like I probably would have---I like to know how something different is going to work.) Because we are familiar with joint injections, I told Anna I would drive her (she's had knee injections before, and I wouldn't want her to drive 20 miles home afterward). So Anna checked in with the receptionist, was called back within about 5 minutes, and she was back before another 5 minutes had passed! She was smiling--she was expecting an injection into her arm, but she said that it was the first time she's ever had an injection it her butt! She was surprised, and said that it was very different. She's going to let me know if she experiences good and quick results like she usually has from joint injections. I probably would not have needed to drive her.
Why do I share this? I'm not familiar with steroid injections into the muscle instead of the joint. I searched briefly online, but could not find much information on this. I'm curious to know if this will work well for Anna, and maybe other parents and patients will be interested in this information as well.
And a piece of good news---an answer to prayer: Anna did tell me that she can already tell a difference in the vision in her left eye, after Monday's injection. We're praying that these two injections this week will bring Anna some relief and enable her to enjoy her summer on the college campus.
Tuesday, May 23, 2017
For Such A Time As This . . . . .
Just over a month ago, Anna and I were on our way to Hershey for an appointment with her retina specialist. As I was driving, a classic song played on the radio: "For Such a Time As This" by Wayne Watson (from back in the 1980's). We listen to WJTL (FM90.3) out of Lancaster, which is not a classic station---they play mostly newer Christian contemporary music. I know the song; I like the song, and I remember this because for the rest of that April morning, I thought about the words of the song in relation to my life and what we were doing that day. I even posted a status on my Facebook page that day (April 19th) from the waiting area of the Eye Center at Hershey.
Yesterday was a day of appointments for Anna. Once again, we were on the familiar road to Hershey, with the first stop being the retina specialist. We were listening to WJTL as usual. I hear a song intro, and once again, about a month later, "For Such a Time As This" comes on.
For Such a Time As This
Now, all I have is now
To be faithful
To be holy
And to shine
To be faithful
To be holy
And to shine
Lighting up the darkness
Right now, I really have no choice
But to voice the truth to the nations
A generation looking for God
Right now, I really have no choice
But to voice the truth to the nations
A generation looking for God
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
You, Do you ever wonder why
Seems like the grass is always greener
Under everybody else's sky
But right here, right here for this time and place
You can live a mirror of His mercy
A forgiven image of grace
Seems like the grass is always greener
Under everybody else's sky
But right here, right here for this time and place
You can live a mirror of His mercy
A forgiven image of grace
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
Can't change what's happened till now
But we can change what will be
By living in holiness
That the world will see Jesus
But we can change what will be
By living in holiness
That the world will see Jesus
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
I was placed upon the earth
To hear the voice of God
And do His will
Whatever it is
For such a time as this
For now and all the days He gives
I am here, I am here
And I am His
For such a time as this
Songwriters: WAYNE WATSON
© Warner/Chappell Music, Inc.
For non-commercial use only.
So what does it mean? I don't know for sure, except that for the next few hours, "For such a time as this I was placed upon the earth, to hear the voice of God and do His will whatever it is" was playing in my head. (It stopped playing in my head once we left Hershey.) In part, I believe it means that there is a higher purpose for all that we experience on Anna's JA Journey. Because I feel a sense of purpose, we are able to face little and big things with an overriding peace.
Maybe I heard the song in my head because there was a young mom with a young baby who needed an eye procedure before Anna could use the procedure room for a steroid injection. Because of the discussion about the room use and schedule (Anna had another appointment to get to later, and we needed to use the room in a timely way), we knew there was a baby there, and then as we waited, we heard that tiny baby scream and cry. I told Anna, "That baby's mom needs us to pray for her." And then as the baby's cries intensified, I told Anna, "This is about the time when an infant's mom starts crying, as well." (All was okay afterward---the mama walked out with a peaceful infant sucking on a pacifier.)
Maybe it's a reminder that we are the "aroma of Christ," a reflection of God's love in our attitudes and actions as we encountered various people and situations and unexpected delays which made for a very long day and no opportunity to grab any lunch (we originally thought we would have adequate time to eat lunch and maybe get some shopping done---didn't happen!). Anna had a hunch that she would need a steroid injection in the eye yesterday. The vision test was the worst I've ever seen (for the left eye). The inflammation was quiet, but the macular edema was worse. Anna explained to the assistant that the letters straight ahead were blurry, but she could see me (sitting to the side) clearly. The OCT showed significant swelling in the back of the central part of her eyeball. Anna was calm and accepting of the decision to inject, and the injection procedure was faster than the first time she had this done (last summer). I still couldn't watch them stick a needle into her eye.
Anna then had a lengthy appointment with the rheumatologist. Because the appointment was at the clinic in Camp Hill, Dr. S. didn't have the supplies needed for a steroid injection for the knee, which Anna has been needing for many weeks. But we'll make another trip to Hershey on Thursday for that injection. Something new, though---Anna said they will inject the steroid into her muscle instead of the joint. I never heard of that. (Has anyone else?) Anna's liver enzymes are back within a normal range, so the dose of Methotrexate will be increased. That should help both the joints and the eyes.
We appreciate, as always, the prayers of so many family members and friends. We have seen some good things these past few weeks, even as Anna has struggled with a stiff knee and eye issues. Attending a smaller private college has been a blessing. Even though Anna does not yet have all the documentation in place to be "official" with the Office of Disabilities, she has talked with the Director of Housing, who graciously arranged for Anna to be on the first floor of the dorm for the summer, closest to the door and steps and walkways that lead to the center of the campus. Anna has begun the second week of her summer job, working in an office on campus, which is better for her than some of the other summer job options that would have required more physical stamina.
We continue on this journey, knowing and accepting that we are here "for such a time as this," and praying that we can encourage others who are on a similar path.
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