Tuesday, January 27, 2015
Well, many of you know that we experienced several weeks of thinking about worsening macular edema, possible solutions with definite risks, and wondering how we were going to juggle an increase in appointments in Hershey (that comes with the territory whenever the eyes have issues). And then, as my last post discussed, the threat of a snow storm on the morning of Anna's appointment which had already been rescheduled twice. I've been having constant conversations with God, asking for wisdom, and as the first chapter of James tells us, thanking Him, knowing that He will give wisdom abundantly when we ask!
We ended up with a family adventure---drove to Hershey (in light rain) and camped out at a hotel overnight (I never knew that this hotel offered a flat rate discount for patients of Hershey Medical Center! That was so nice---it pays to be a little chatty when you make inquiring phone calls) Even though the storm was not as severe as predicted, it was nice to have a complimentary hot breakfast at the hotel (slow, quiet night and morning at the hotel---there was only one other couple in the large dining area), and to only travel about three minutes over to the campus of HMC.
We explained the recent history to this retina specialist (only the second time we've seen her), including the major concern three weeks ago, when Anna's visual acuity was tested (and found to be problematic) at the ophthalmologist. We had an OCT done, and it's amazing!!! That OCT (an ocular CT scan---it takes photos of the back of the eyeball) is the most normal OCT I've ever seen of Anna's eyes. Whatever problem there was three weeks ago (and there was, indeed, a problem, and Anna said then that she had noticed a change since Christmas) is gone. Wow! Awesome! so instead of talking about the not-so-great options for treating macular edema, we can cancel next week's appointment with the ophthalmologist (and reschedule for six weeks from now), schedule the next appointment with the retina specialist for late April, and talk about the short-term goal of getting Anna totally off the Pred Forte drops, using Methotrexate and Remicade to keep things under control. (Of course, we can call and get in to see either doctor if Anna notices any adverse changes.)
I have a tendency to over-think anything and everything in life. And it's easy to do so now. Is this a miracle? I have no idea. The doctor said that macular edema can come and go (I had no idea that it could go away THIS quickly!). Why has God allowed this to go away now and not anytime last year? I have no idea! I'm all for accepting that God allows things in our lives to refine us and to help us grow and mature. I have worked to accept that. For whatever reason that we have this wonderful turn of events, I am so grateful and inwardly dancing with joy and thanking God over and over that our lives are not going to become even more complicated in the next few weeks with added appointments and treatment options. If I use the analogy of trying to keep a row of spinning plates balanced and spinning, I can say that I feel like someone has removed one plate---one less plate to spin, and that is a HUGE relief.
We are so grateful for the prayers and support and encouragement we receive from so many friends and family. We're thankful for you, and so glad that we can share great news that we are on a easy road at least for now (jaw reconstruction surgery is still on the horizon for early summer).
For today, we are joyful. We are smiling. We are laughing. And we're laying down some of our concerns. It's been a good week so far!
Friday, January 23, 2015
Our plans to see the retina specialist hit a major speed bump, when said doctor got called into surgery this past Tuesday, the very day when Anna was supposed to see her. I am not always a patient person. In my mind, macular edema is a problem, and I just want to know (sooner rather than later) what our plan of action is going to be. This is the second time an appointment with this specialist has been cancelled and rescheduled. As I thought this change of plans through, I made sure to tell the scheduler that Anna's ophthalmologist thought that Anna needed to see the retina specialist soon, and was even concerned that Tuesday's appointment was not as soon as he would have preferred, and that this is the second time we've been asked to reschedule. The very best the scheduler could do is to make an appointment for this coming Monday at 8:00 a.m.
And now our local weather people (the ones who have a good handle on forecasting weather---the ones I trust the most!), are thinking that the morning commute on Monday is going to be a problem (snow Sunday night into Monday). I'm still looking at all the pieces of this puzzle and figuring out what to do. In my mind, rescheduling is not an option. It's challenging to get an appointment with this doctor. We have 20 miles to go, but on snow-covered roads, who knows how long that will take! Maybe spending a night at a hotel in Hershey on Sunday would be the best option. By the time Anna gets finished with the appointment (anticipating at least one test---an OCT, I'm certain), the roads will probably be much better. I did call the Hershey Eye Center today, to see if they ever cancel appointments because of weather (didn't want to waste the time and money if the appointment would end up being cancelled by them anyway). She said they never cancel for weather-related conditions.
We shall see what this weekend brings. And we will get to Hershey on Monday morning. On the bright side, maybe school will be cancelled on Monday, so Anna won't miss any classes!
I am confident that God is sovereign over those things I cannot control. I've done everything I know to do within my boundaries. (Really, it is not in my nature to scream and yell at the schedulers---this is not their fault, and it's not the doctor's fault that she was called into surgery---someone really needed her more than Anna and other patients needed her on Tuesday.)
Casting Crowns has a song called, "Already There," which helps me have some peace when there are so many circumstances beyond my control, and I can't see how everything is going to work out:
Sunday, January 11, 2015
Not a Fan of Oral Prednisone!
When we returned from Boston, Anna had been on oral Prednisone for about a week or two. But side effects began surfacing. Her thought processes were in a mess, and her emotions were very scattered and a bit crazy. We were in touch with her rheumatologist, and he gave us a faster taper schedule. The good news about the Prednisone: it cleared up whatever was causing Anna prolonged pain in her one big toe. That hasn't returned.
Truly Thankful at Thanksgiving
Anna had an appointment with the local pediatric ophthalmologist just before our Thanksgiving holiday. Her vision was 20/20. No inflammation, although the doctor described a "haze" or a "flare" being present --- no actual cells floating around. What he described is like a haze of humidity/steam after a summer rain---the moisture is still in the air until a front comes to blow it out to sea (we live on the East Coast, and that's how many of our weather patterns occur---it's what I'm familiar with). He wasn't worried; he was actually very pleased. Anna had also seen a new doctor---a retina specialist at Hershey Medical Center, who will be monitoring Anna's macular edema issues. A new OCT (imaging of the eyeball) at that appointment showed that the macular edema had improved since her last OCT. Good news! The retina specialist basically said let's not change anything right now, since she's improving, and we aren't exactly sure which latest change in her medications we can attribute the positive changes to.
Anna also saw the pediatric rheumatologist just after Thanksgiving. Joints remained quiet, and he was pleased with the reports on the eyes. Anna was in a negotiating mood. She had previously talked the ophthalmologist into allowing her to stop the dilating drop she was on---he said okay, although he couldn't promise that she wouldn't ever have to use it again. And then she was cheering when the prednisone taper was rushed. Since the doctor brought up the idea of maybe trying to decrease Methotrexate a little, Anna asked if she could switch back to the oral Methotrexate instead of the injectible (she has psychological issues with the shots). He agreed. We stayed at the same dose---just a different form, knowing that the injectible Methotrexate is probably more effective than the oral.
I always try to be thankful, even in difficult circumstances, but for Thanksgiving 2014, it didn't take much effort to come up with things to be truly thankful for. We were counting our blessings, indeed!
Feeling Good Towards the End of 2014!
or A TRUE Holiday!
I often spend time reflecting when a year comes to an end (it's always good to take stock of where you've been and where you're going, I think!), and after Christmas, as we moved toward a new year, I was thinking how challenging 2014 was in so many ways. This JA Journey in 2014 seemed like a hike up a high, rocky, tough mountain. But I kept thinking that at the year's end, we seemed to be nearing the top of the mountain where the view is really great---sometimes AWESOME if the weather is just right. I wasn't juggling my work schedule and projects with doctors' appointments as much; Anna was able to attend school fairly regularly, so she wasn't getting behind in her school work. I was "breathing a little easier" as far as Anna's health issues go. I was taking a break from replaying in my head doctors' thoughts, theories, and opinions (lots of variation there!) to decide which one I trust most and agree with for Anna's overall health's sake. The holidays (Thanksgiving, celebrating the birth of Jesus, and celebrating the new year) were not just holidays in name only---I felt like we had been given a true holiday from health issues (once Anna had her Remicade the week before Christmas and my son had his wisdom teeth removed the day after that---we put all health stuff on the back burner to celebrate Christmas and some time off to spend with a whole lot of family and friends.)
And then we arrive at 2015---a new year, with only the knowledge that God walks with us wherever we are. He sees and understands. He's already in our future and knows how all of the pieces will fit together once the big picture is done. There are a whole lot of options for a blog title to begin the new year:
Navigating the bumps along the way
Finding the joy when troubles come our way (from James 1:2-4)
Developing our character and endurance (from Romans 5:3)
Sometimes, during our drive to Hershey in 2014, Anna would warn me when she thought a visit to the ophthalmologist may not be a good appointment, because she knew something was going on with her vision that was not good. She forgot to mention anything to me this past week as we made that drive which has become so familiar. So when she was taking the vision test and couldn't really see the larger, circular letters, I realized that our "holiday" was officially over. Reality has set in once again, and we choose to deal with the realities.
Although the local ophthalmologist doesn't have the equipment to do an OCT in his private practice (that's why we've added a retina specialist at The Eye Center at Hershey Medical Center), he used the equipment he does have to see as much as possible into the back of Anna's left eye, he could tell that it's different than the right. Just the vision test itself gave me a good indication that the macular edema is a problem again--that's it gotten worse than it was in October. Dr. M. asked Anna when she first noticed a change for the worse in her left eye vision, and she said right around Christmas time. I later asked her why she hadn't mentioned anything to me, and she said it was very gradual, and she just forgot to mention it, and she knew she had an appointment coming up soon, anyway.
The bottom line and most probably cause of this decline: at Anna's appointment in November, she was probably still benefiting from the oral Prednisone, which she had just finished taking. Those effects have worn off. And Anna really does NOT want to go back on the oral Prednisone.
So where do we go from here? We'll see what the retina specialist says on the 20th. (I really do like her.) Time for various thoughts and statements to swim through my head now as we wait for Dr. N's opinion. Anna was not able to tolerate Sulfasalazine (problems within the digestive system many years ago when she was 4 or 5), but two of the doctors are wondering if she would be able to tolerate Diamox (a sulfa-based med), which is normally used to treat macular edema---they are considering that. Dr. Foster has prescribed Prolensa drops, which Anna continues to take, but one doctor says that prescribing Prolensa for Anna's macular edema is like sprinkling water on a raging fire. It's not going to do much at all. He doesn't know what Dr. Foster thought that would help. (Anna's macular edema had improved a bit by the time we were in Boston---it wasn't nearly as bad as it had been in August.)
Our worship service speaker this morning spoke from the book of James, first chapter. A few years ago, I started memorizing that book (only got to the first 12 verses before life got in the way of memorizing Scripture). But I love how the Lord seems to speak directly and clearly to me when it's time to face some big and hard realities of life (even more so than when life seems fairly carefree).
"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete in every way, needing nothing." James 1:2-4 NLT
He allows these circumstances because He knows that when our faith is tested, our endurance has a chance to grow. Endurance is a foundation for character. And character produces hope. (from Roman's 5:3)
I may have quoted Victor Frankel before, from "Man's Search for Meaning," which all of my Messiah College alumni friends (from my years in college, anyway) will be familiar with---we had to read it for one of our general education courses. We may not be able to choose our circumstances, but we can choose our attitude. Victor Frankel spent time in a concentration camp, and yet he still chose his attitude.
We may be at the foot of another tall, high mountain for the coming months of 2015, but we'll choose to keep our focus on the bigger picture. Until then, we carry on with life, not letting the realities of JA and uveitis and macular edema consume us. Anna just participated in District Band this past weekend (beautiful concert of gorgeous band music), and she has County Band and County Orchestra coming up in the next few weeks, as well as playing the bassoon in the "pit" for the high school musical, "Peter Pan" in March. We love staying connected with family and friends, and appreciate the love, support, and understanding we receive from them---we are surrounded by a great support system. We "keep on keeping on." Life is still good. God is still good. His plans for us are good. We know that, and we trust Him.