The Dreams of Moms . . . . Holding Steady

I had a dream one night before the appointment.  In my dream, Anna's uveitis had returned. It was a dream that startled me awake.

In the past 17+ years since Anna's initial diagnosis, I've learned that for me, it's best not to go into appointments with any wishes, hopes, dreams, etc.  I'm a realist, when it's all said and done, and I've concluded that this is the journey that God has allowed us to travel, and we can rest on His promises that although life will have troubles and trials, we have the opportunity to grow and to be refined (and better reflect the light of Jesus) in the process of the journey.  Each time I've been tempted to wallow and worry about what will happen to the uveitis without biologic meds, I've heard a whisper in my head---a reminder:  "Who of you by worrying can add one hour to the length of his life?" (Matthew 6:27 AMP)

Monday was Anna's first eye appointment since we received the news that she is no longer able to use any TNF inhibitors (like Remicade, Humira, etc.). We started out with Anna's vision test (not terrible).  She did tell the assistant that she was noticing a bit of blurriness sometimes at long distances.  Given my dream and this information, I was mentally preparing myself for not-so-good news.  BUT, the OCT (a test which takes a picture of the back of the eye) was clear (Praise God!), and as Dr. N. thoroughly examined every square centimeter of Anna's eyeballs, she found no evidence of any inflammation.  Dr. N. was not commenting during those long moments of examination, and when I told her afterwards that I had dreamed the inflammation had returned, she apologized for not saying anything sooner! She said, "These are the things moms dream about."

So relief for today.  Appreciating these days and weeks of no inflammation and no swelling in the back of the eye -- and no injections or infusions! Thanking God for the gift of each new day, for this semester of college that Anna is enjoying and appreciating.  In this photo, she is up on the ropes course at the college, with an experienced partner beside her, navigating the course as a strong cold front blew in with gusty winds (right as she was up in the air!). Sometimes I think life seems a bit like this ropes course: exciting, a little scary, a little treacherous at times, but exhilarating when you make it through some obstacles and precarious situations. Life with a chronic illness certainly has some precarious situations.  How thankful I am that we are anchored to Jesus---our rock.

Big Change Ahead -- Taking a Leap Into the Unknown

Ready or not---we are taking a different path on this journey.  Anna was scheduled for a Remicade infusion this afternoon, but before we headed to Hershey, her new adult rheumatologist had scheduled an appointment to talk (a little closer to home---she was in a satellite office today).  She (the adult rheumatologist--Dr. S.) is concerned about the results of some labs that Anna had done last month.  Dr. S. says that the numbers indicate that Anna is heading toward medication-induced lupus.  I have always tried to be mentally prepared before these appointments, so I had been thinking about this appointment and all of the possibilities and options available.  I was assuming that maybe we would taper the Remicade and discuss other biologic therapies.  I was not mentally ready to hear that we are stopping Remicade for Anna, and all of the other TNF-inhibitors are now "off the table," because it's not just Remicade that can cause medication-induced lupus.  It's all of the biologics.  The Remicade infusion for this afternoon was abruptly cancelled. No more monthly 4-hour appointments in Hershey.  The course for now is to continue with the Methotrexate (not increasing it, because the liver enzymes numbers have been slightly elevated lately), and continuing the frequent appointments with the eye specialist so that we know what's happening with the uveitis.

There are a multitude of thoughts and emotions that I have experienced this afternoon (I can't speak for Anna, although we talked a little bit about this as I took her back to the college).  On the one hand, I feel like cheering and maybe dancing, because she is done with those potent biologics.  That alone deserves a celebration---maybe?  On the other hand, there's a little bit of panic.  The battle over the years to control the uveitis and protect Anna's sight in her left eye has been long and tough and heart-wrenching at times. We have relied on first Humira, and then Remicade, to "keep the beast at bay."  On the one hand, I am not a doctor, and Dr. S. knows SO much more than I do.  On the other hand, I keep thinking, "Has she read Anna's medical history?  [I think she has.]  Does she know the extent of the uveitis flares we've experienced in the past?  What in the world is going to happen with Anna's eyes since we're quitting biologics 'cold turkey'?!"  I don't want Anna to have Lupus, but I also want to protect her eyesight.

If you have read most of my blog posts, you know that the Lord often speaks to me through songs.  After the appointment today, a song was playing on the radio, and that little voice in my head kept bring my attention to some of the words of Matt Redman: 

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone
Never once did You leave us on our own
You are faithful, God, You are faithful

We are definitely taking a gigantic leap into the unknown, and it's a little frightening.  Yet we know that God has been faithful in the past and will continue to be faithful, and we never walk alone.