Transitions in the Journey. . . . .

I reviewed my blog today, and I saw that it's been 18 months since I last posted any updates.  And this will likely be one of my last posts/updates.  Much has happened in the past year and a half.  

Anna had cataract surgery in December 2018.  The surgery went well.  the photo to the left is her prepping for the surgery---she prefers to put her own eye drops in!
She did develop a film over her eye which needed to be removed.  (Her cornea specialist had told her this could happen in a few days, weeks, or years, and he could easily remove it.)  She saw him about two weeks ago, and he released her from his care (with the knowledge that she can call if she needs him).  She really liked him!  He told her that if she misses him, she can come say 'hello' when she sees her retina specialist.

These past eighteen months have also been a real shift into a different gear for this journey--or should I say, a new path for Anna.  She has continued to grow as a young adult and has increasingly taken over more and more decisions.  I don't even know about some of her thoughts and decisions sometimes (and I realize that's normal---I was the same way as a 21-year-old.)  I've been reluctant to share some of this in a public blog, knowing that everyone will have their opinions.  I know many JA parents read this, and this may be alarming at first---but the truth is, many of you parents may experience this in the future, too, as your young adults take over their own care.  So maybe you need to hear this.

Anna stopped taking her medications (except for her eye drops---as far as I know) over a year ago.  If you have read my blog, you know that the biologics are no longer an option for her, as they caused medication-induced lupus.  (All of those Lupus symptoms went away when she stopped the Remicade.)  Her rheumatologist was trying a few other options (Plaquenil, Mobic, along with Methotrexate).  Anna had been on Methotrexate on and off (mostly on) for well over ten years (the years start to run together after awhile, and I can't even remember!).  I don't know all that she was experiencing, but she was reading up on all of the side effects, and realized that besides the panic attacks that came with increasing frequency and duration when she even thought about taking Methotrexate (and even getting ready to go to the college's health service building to have someone else give her a shot), she was dealing with depression and a concerning change in her thought patterns.  She is convinced that the Methotrexate was causing it.  She began seeing a counselor (and still sees one now).

I urged Anna to tell her doctors about stopping her medications, and she wrote to her pediatric rheumatologist first to "bend his ear" about it (she probably felt safe with him, after being under his care for so long---he knew her before she was 2 years old.)  He told her that the rheumatologists are never shocked or surprised to hear that their patients have stopped taking certain medications, but she also needed to be honest with her adult rheumatologist and retina specialist.

The good (I should say GREAT) news is that Anna's joint have not been a problem.  (After what she experienced two years ago when she abruptly stopped Remicade, this is a miracle!---some have been praying for this for a long time.)  Someone asked her the other day how her eyes are doing, and she said they are doing well.  The left eye flared a bit (uveitis and macular edema, as well) after the cataract surgery, but she was told that is normal.  She has received good reports at the most recent appointments with her eye specialists.

After almost two decades of me (Anna's mom) reading and researching and listening to doctors and trying to understand this disease (Juvenile Arthritis and uveitis) and how medications help and what could happen if medications aren't taken, let me tell you I had weeks (if not months) of adjusting my own thoughts!  I've often thought of the Bible verse that talks about "praying without ceasing," and I'm thinking that every mother who knows God and understands the power of prayer must know that praying without ceasing is everyday life!  No problem, there!  Anna has two older siblings who have already left our nest, and I think I was thinking the third child transitioning to adulthood would be easier!  Guess not.  I have been learning SO MUCH about surrendering my children to the God who loves them more than even I do and wants to use them so that others may know who He is.  He promises that He works all things for good for those who love Him and are called according to His purposes, so I need to trust that.  I'm learning more and more about keeping my mouth shut and my thoughts to myself unless I'm asked, because how many 21-year-olds want to hear their mom's opinions!?  Anna tells me that many of my opinions and philosophies are already ingrained in her head.  And yet she is her own person with opinions that may not be mine.  And we need to allow our adult children to make their choices---whether they seem wise or not in our minds.  I know Anna belongs to God, and I know she loves Him and wants to follow Him.  So I need to trust her to go in that direction (and continue to pray for her, knowing that I have no control over her life.)

So after 20 years (Anna was diagnosed in July of 1999), my role in Anna's JA Journey has come to an end.  I seriously doubt that Anna will blog about her journey from here, although she is welcome to!  But she is busy! She has begun a full-time job, and she is taking a non-traditional course of study at a Bible college about an hour away from here.  She continues to be a co-youth leader at our church.  Her social life has gotten a bit busier than it had been.

After almost 20 years of multiple doctors' appointments and keeping up on the latest advances in treatments and worrying about signs and symptoms of arthritis and uveitis, I no longer need to do that.  In keeping with the analogy of a journey, it's like I've come to a fork in the road, am able to put down my backpack/burden of JA and uveitis stuff/knowledge, and allow Anna to continue on, while I look around me at the landscape ahead and decide which direction to go next.  Before my mom passed away this past January, I was telling her that I now have all this time I didn't have before, and I was figuring out what I need to do next.  She said, "Maybe you need to REST."  So I have spent a lot of the last two years intentionally slowing down. And still praying about what's next. (And at this moment in time, "what's next" is spending more time with extended family, as we continue to grieve the passing of my mom and several months later, one of her brothers---don't take your family for granted!  Love them!  Spend time with them!)

So thank you to all my family and friends who have faithfully read our updates over the years, and to those of you who have prayed for Anna and for us so faithfully.  (We can still use your prayers!).  I still belong to some of the Juvenile Arthritis and Uveitis Facebook groups, although I don't always feel that I have much to contribute.  The JA and Uveitis moms I've become friends with over the past two decades have at times been a lifeline and a huge support for us and some remain friends to this day.  I encourage anyone who is dealing with this or anything else to find a group of friends who can relate and understand what you're going through.

And if you find that your teenager or young adult is struggling, PLEASE prayerfully consider counseling for them.  Don't hesitate to talk to their doctors about it.  Sometimes I wonder if we should have pursued counseling earlier.  

One thing I KNOW to be true for us---God has been so faithful.  His love has never changed.  During the toughest parts of this journey have been times when we have felt closest to Him.  He truly has been and will continue to be our strength in all of life's journey.

A Little Rough Patch in the Journey

As Anna continues to hold the reins of control in her medical journey, I am usually now just observing (and praying!).  And she still asks for my advice sometimes---like which doctor should she call---on a Sunday morning, should she call Hershey or just go to Urgent Care?  When the issue in question is the eye, my immediate response is "call Hershey."  Anna woke up this morning thinking she had pink eye.  She did call the Eye Center at Hershey, as the on-call ophthalmologist wanted to see her as soon as she could get there.

She may or may not have pink eye (conjunctivitis).  In fact, the doctor didn't give her any antibiotics.  But he did find some inflammation in the front of the eye (the right eye this time---not the left eye, which has the most complications).  He said that it's very possible the inflammation was causing the itchiness and irritability and redness. So he prescribed some increased Pred Forte drops for the next two days and an appointment to see her retina specialist on Tuesday morning.  Anna has been dealing with a cold virus, which has likely exacerbated her eye issues.

While Anna was driving herself to Hershey and taking care of her medical needs, I was with my small group at church, going over some very wise words from James MacDonald in his "Lord, Change My Attitude" study.  MacDonald was talking about "a specific combination of circumstances that might be stretching us or about something He's allowed to keep us close and humble . . . instead of disrespecting God with [our] complaints, see this as your best opportunity to draw near to Him and let Him provide what you need for the situation."   So that's the perspective we will take with this bumpy stretch of road in Anna's JA Journey.  

I have come to the point where I realize that we have little control over Anna's uveitis issues.  We're doing the best we can by partnering with doctors whom we respect and trust.  The rest is in God's hands.  There are so many little things to be thankful for----that we live within a relatively short distance to the medical center, that as soon as Anna calls and explains who she is, who her doctor is, and her present situation, they say, "Come right now," even on a cold, Sunday morning when the doctor also has to drive to the Eye Center just to see her.  We can be thankful that she drove herself home with no problem, even though her eyes had been dilated (she didn't tell me that until she was safely home---she knows I don't like her driving with dilated eyes).  We can be thankful that she will see her retina specialist in two days, instead of waiting until January 24th (her previously scheduled appointment).  We are very thankful that this is

all happening before she heads back to college this week.  (When she started having some cold symptoms, I told her that if she was going to get sick, at least it's happening about a week before classes begin again, and before she goes back to dorm living!)

Some of you who read this are believers and pray for Anna.  Thank you so much!  The fervent prayers of the righteous are powerful and effective.  In these combination of circumstances, God has indeed provided for our needs in so many ways. I never want to take that for granted.  

"Taste and See that the Lord is Good": Living Life to the Fullest on the JA Journey

So much has happened in the six weeks since my last post.  Anna visited the retina specialist this week, expecting the tests on her left eye to show that the macular edema was even worse than July.  The visual acuity in that eye certainly isn't good, and probably worse than it has been in awhile.  (Anna has never worn glasses, her vision usually being 20/20 in both eyes when there is no inflammation or swelling.)  I heard Anna having an animated conversation with the OCT technician, and later discovered that they found the swelling in the back of the eye (macular edema) to be gone!  Resolved!  Totally unexpected for us, so we were amazed (and thanking the Lord!).

We were left with the puzzle of why Anna cannot see very well with the left eye.  The issue (in part or in totality) is a cataract which has been forming.  Because Anna's eyes were completely dilated, it was useless to test her vision with a corrective lens (the doctor tried, but Anna just couldn't see well).  That test will have to wait until another time.  I was thinking how odd it seemed to be leaving the doctor's office feeling relieved and smiling about a cataract forming on the eye of a 20-year-old.  But we considered this to be much better news than the worsening of macular edema. A cataract can be removed (although the doctor does not want to do anything about it right now since Anna is in the middle of a college semester.)

Changes are still on the horizon for Anna because of these new developments.  The cataract is a side effect of the steroid drops she has been using for years.  We really need to get her off that steroid drop.  We thank you for your past and continued prayers.

Anna continues to make the most of every opportunity that comes up at college.  She recently participated in an all-day canoe trip from the college to the Susquehanna River.  She LOVED it!  Last week she let us know that she wouldn't be home for Fall Break, because she had signed up for a service project.  That service project took place close to home, so we still were able to see her and catch up with her.  She LOVED the time spent these past few days!  It was a "mountain top" experience for her.  The leaders of the trip combined their service with times of worship and reflection, and time spent experiencing God as He worked through them and spoke to their hearts.  Anna's words describing the past few days were "AWESOME!" and "AMAZING!" 

Between Anna's experiences of this past week and the stories I've heard of relatives who are walking through very tough journeys and are trusting and relying on God's love and wisdom on a daily basis (and seeing evidence of His care in tangible ways), I was reminded of these verses (7 and 8) from Psalm 34:  For the angel of the Lord is a guard: He surrounds and defends all who fear Him.  Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!"   Anna is certainly experiencing this joy lately! 

Life Goes On . . . Joy in the Journey

Anna and her brother Joel at a recent family wedding

Anna is about ten days into her second year at college, after a good summer with a full-time office job and living on campus, building relationships with new friends. After last year's classes, she has a better picture of what career path she doesn't want and other areas she would like to explore and persue.  (Isn't that what the college years are all about?!).  She's sticking with the same major course of study of Human Development and Family Science but choosing a different minor.

While Anna's joints are doing well, her left eye never did settle down completely with the macular edema, even after the ocular injection at the end of spring.  We've been taking trips to the retina specialist about every 4-6 weeks all summer to keep tabs on the swelling. This past month's OCT (the picture of the back of the eyeball) showed that the swelling is a little worse than the July appointment.  We return in mid-October, and another ocular injection is an option if the swelling does not improve.

The GOOD news is that Anna continues to focus on the journey of life in general instead of the JA Journey being at the forefront.  It probably helps that we cut out the monthly Remicade infusions nearly a year ago.  (Even though that situation created more of a challenge in controlling Anna's diseases.)  Those 4-hour appointments, in addition to appointments with the rheumatologist and the eye specialist (every appointment 20 miles away through heavy traffic, which could take anywhere from 30-60 minutes) kept Anna's issues at the forefront of our minds and lives.  We've gained a lot of perspective in the last year or so. Anna was a Child Life Volunteer for her spring semester, and she saw patients and families who practically live at the children's hospital.  My husband, in his work setting, is getting to know a college student whose sister has been in the hospital for a few weeks now.  The more I listen to people, the more I realize that ALL of us have "something" that we're dealing with.  After 18+ years of this JA Journey, I hear other stories of even greater trials and hardships that people are facing and think, "With God's help, we can certainly handle this!"  Jesus is our strength when we are weak.

For now,  I'm glad that Anna is smiling and is enjoying being a young adult.  She truly is finding JOY in this leg of the journey. 

Relief for the Summer!

Has it really only been two weeks since the injection "into the butt" for the joints? After months of stress and distress and health issues, Anna's summer has begun with relief for the arthritis in her knee (we won't know the effectiveness of the periocular injection until we see the retina specialist in two weeks).  So she has laid aside her textbooks for the summer, began working 40 hours/week in an office on the college campus until the fall, and is enjoying some friends and activities within the college community for the summer months.  She shared these pictures from Pole Steeple in Cumberland County, PA.  She and some friends hiked there last evening and evidently stayed to watch the sunset.  I loved that she included a picture of the outcropping of rocks at the top.  It's metaphorical for her journey these past several months.  She's been through some hard and challenging times, but for now, she's come through them, able to see clearly and enjoy the beauty around her without the constraints of the pain, the limping, and the limitations to the sight in her left eye.  As always, we are so grateful for those who pray with us, who cry with us, and for now you can smile and laugh and praise God with us! (And you can dance with us in celebration, although I wouldn't recommend dancing on the edge of the rocks at Pole Steeple!)

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.

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

Wayne Watson

Now, all I have is now
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

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

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

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.

Data from: LyricFind  

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.

It Is Well With Our Souls--Even when God chooses to leave mountains unmoveable

"In times of trouble, may the Lord answer your cry.  May the name of the God of Jacob keep you safe from all harm.  May He send you help from His sanctuary and strengthen you from Jerusalem."  Psalm 20:1-2

The past month has seen little change in Anna's health.  In fact, to those of us who see Anna occasionally, sometimes it seems like her joints are worse (because her main issue is her knees, we notice when she walks and as she moves around).  We're at the point in our journey where this blog is not always first-hand information.  Anna is officially an adult and manages her own health and contacts her doctors on her own.  I only log into her Health Portal if she asks me to (to get my feedback on a message from her doctor, etc.). Those occasions are rare.  Last I heard from Anna in regards to her messaging her doctor, she was waiting to hear from her rheumatologist, after inquiring about steroid injections to the knee (or knees--I'm not even clear on that!)

Anna has had two eye appointments since I last gave an update.  The right eye has more inflammation (frequency of eye drops was increased); the left eye inflammation was a bit better; the swelling in the back of the eye is not worse, but no better.  Next week, if there is no change with the Macular Edema, she will most likely receive another ocular injection.

Anna is like the Energizer Bunny who keeps on going. Despite the challenges of stiffness and walking, I hear that she went for a hike the other day.  And she continues to volunteer at the medical center, as well as with a program for some refugee children in our area. She shows up for her college classes, shows up for her work study job, has a summer job lined up, and she keeps smiling.  She gently resists our suggestions for ways that might make life a little easier for her given her present circumstances, assuring us that she's doing fine!

Since I have become more of an observer than participant in Anna's health, my main role lately has been to pray fervently for Anna and her doctors and to keep the faith.  (Anna does fine with that, as well.)  This year of transitioning to an empty nest has me really seeking God on what He wants me to do next (sometimes the next minute, sometimes the next day, etc.)  Since January, I've become more intentional in saturating myself with Scripture (thanks to a friend who recommended theFelicityBee.com---a plan for "Inscribing the Word" each day---writing God's Word on our hearts.) I've also been involved in a very convicting Bible Study with some ladies, taking a hard look at our attitudes---and striving to live a life of abundant faith instead of "wildnerness living." 

At this moment, this JA Journey seems so very challenging.  We keep waiting to see if the medications prescribed for Anna (much less potent than any of the TNF inhibitors that worked so well but caused medication-induced lupus) will make a difference in her quality of life.  I can't remember when Anna's health was lower than it is right now.  

I talk so often in this blog about our Creator God (our Redeemer, our Lord) who loves us more than we can even know.  I have to tell you---if you have read most of my blog posts, you know that God puts a lot of songs in my head---especially when I wake up in the middle of the night or in the mornings.  The song that was in my head in the early morning before Anna's eye appointment last week was "Overwhelmed" by Big Daddy Weave.  As the song was running through my head, I was talking to God, praying about the upcoming appointment, and telling Him that I really wanted to be overwhelmed by Him that day.  I wanted to feel Him and have some tangible evidence of my faith.  When the Retina specialist was talking to us, I accepted the fact that we weren't going to overwhelmed with good medical news that day.  But can I tell you that in the next 24 hours, whenever I checked Facebook and saw some shared posts (like a Beth Moore video clip or some blurbs of encouragement by Anne Voskamp), or when I worked on my Bible Study homework or my "Inscribe the Word" project for this year, or when I got in the car with my favorite Christian radio station on---I WAS overwhelmed by God's presence.  Every word in those posts or on the radio or in the Scripture I was reading was penetrating my soul---all of them were pointing to the very same Scriptures (and I don't believe in coincidence), so I read them several times that day.  I was thinking later that it was almost like being blanketed with God's love that day.  And I know why God doesn't do that every moment of every day---His love and care is so overwhelming that I would be a blubbering mess of gratefulness and not be able to function. As I watched my son run a Steeplechase race on Saturday---a difficult, long, and grueling race---I was thinking that our journey can be like that, and we have God as our "coach" and Father, and a great cloud of witnesses (like the fans at a track meet) who are cheering us on and encouraging us and loving us through the grueling obstacles we face.

We still have "this hope as an anchor."  Thank you for your continued prayers and encouragement.  My Bible Study homework this past week was on "faith."  Replacing our attitude of doubt with a heart of faith.  The homework talked about the importance of surrounding ourselves with other people of growing faith who will encourage us and pray for us and speak Scripture into our lives.  Some of you do that for us.  Thank you.

And just in case you like to watch YouTube videos, here is a song which God used to speak to my heart on that day I asked Him to overwhelm me.  It was playing on the radio, and in that moment, I knew He intended it for me:

(Here are some of the lyrics before I post the link to the video)

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

Read more at http://www.songlyrics.com/mercyme/even-if-lyrics/#X66kHypjvJ5Xe2VA.99

Still in a Storm on This Journey . . . . Update

I can recall many times over the past three decades when we faced rough spots, and I've said to myself, to my husband, and to my children, "God has been so faithful in the past, and we can trust Him to be faithful in the present and in the future." Sometimes His faithfulness doesn't mean that we see a miracle.  Sometimes things get worse.  I do know that when our journey gets stormy, and I share with our support system (our friends, family, and network of families going through similar circumstances), that support system lifts up Anna (and us) to Jesus.  We continue to pray for Anna's body as the Plaquenil (at a half-dose now, because of adverse side effects) does little, if anything, to keep the inflammation at bay, not only in both eyes, but also at least one joint.  Anna's knee has been very painful these past ten days.  We also pray for Anna's doctors as they work to determine what will help Anna with the least side effects.  

Anna had an eye appointment yesterday.  My husband went with her instead of me this time (he already had a day off, and I didn't then have to interrupt my work day and make up time later).  When I got home, I saw the OCT (the picture of the back of Anna's eye), and the swelling (macular edema) is definitely back.  I didn't see Anna before or afterwards--she is so busy with college work as she gets ready for spring break.  So the realist in me has been a little sad, a little worried at times, wondering how Anna is doing (emotionally and physically), remembering how the first several months of 2014 were when the macular edema first surfaced, and stress was very real, and school work (high school at that time) suffered.

However, Anna just "Voxed" a message to me this evening.  (We use an app called "Voxer" and she and other family members and friends can record messages---sort of like verbal texting---we can send pictures and videos and text messages, as well, individually or in groups.  Our family really likes it, and we use it frequently.)  She sounded upbeat, even though she has a LOT of work tonight and tomorrow before spring break---said she wouldn't even be able to listen to any replies I may send or read the latest e-mail I sent her last night.  As she is processing all that is happening, she assured me that this recurrence of the macular edema and eye issues is different than when Humira failed in 2014.  Anna was thinking that I would probably be updating this blog soon, and she gave me some positive thoughts to share:

• In 2014, when her vision was a problem, we had no idea what was happening, and it took weeks if not months for the pediatric ophthalmologist to realize that maybe she had swelling in the back of her eye (he did not have equipment to test for that). Now we know what macular edema is.  It's no longer an "unknown."  And she trusts the retina specialist to stay on top of the issue and do what needs to be done in order to do everything possible to preserve her eyesight.
• In 2014, she was going back and forth between the pediatric ophthalmologist and the retina specialist, and juggling the two very different personalities and methods and relaying information from one to the other--that was stressful!  Before entering college, Anna pared down to one eye specialist---keeping the retina specialist who treats adult patients as well as pediatric patients, and who works at the medical center where everything they need for testing and for treatment (like ocular injections) is readily available.
• Those stressful months in 2014 led Anna to meet frequently with her awesome high school guidance counselor (God bless him!---I'm still thanking God for his compassion and wisdom), who helped her come up with coping mechanisms and practices to help manage the stress of health issues and frequent appointments and a boatload of assignments and tests.  She now knows ways to stay organized which help to keep her from being totally overwhelmed with everything.
• We don't have as many appointments to Lancaster (in 2014 we were going to Lancaster every six weeks for orthodontia and preparation for jaw reconstruction surgery in 2015).  So that's one thing off our plate.  (Now she's on a six-month appointment schedule with the Lancaster Cleft Palate Clinic and doesn't go back until June.)

I was thinking today that obviously, God's plan for this moment is not any miraculous healing.  So maybe one purpose of this storm is about changing me and my own thoughts and attitudes.  This entire journey has been a process of changing me (and I can only speak for me---not Anna). Please know that when you pray for us, you ARE helping. Even when the answer is not some fairy tale ending.  With your prayers, Anna is staying positive and sounding upbeat and she is filled with hope and excitement of her spring break plans to visit her sister and family in Tennessee in spite of knee pain and vision issues.  Your prayers for her doctors help (I've seen it in the past and trust we'll see again that they work hard to come up with creative ideas and options to help Anna).  Your prayers for us help---to keep this journey in perspective. This is not all that our life is about.  It's just a very small part.  I'm reminded often that each and every day is a gift.   

One Step Forward, Two Steps Back--Praying for Wisdom

Twenty days can bring a whole lot of change, and not all of it good.  In the last twenty days, Anna stopped taking Methotrexate (because of elevated liver enzymes).  She began taking oral Prednisone and Plaquenil. The oral Prednisone was finished after a week (thank the Lord! Anna does not like what Prednisone does to her mind).  In the middle of that medication dose, Anna's foot was feeling so much better, but as she tapered the medication, the arthritis returned.  So her rheumatologist arranged for her to have a cortisone injection into the joint this past Friday.  This was done by the radiology department at the medical center, as the joint is to tiny and the procedure needs to be precise.  Afterward, Anna wished she had her phone or a camera with her.  She was able to watch on the monitor as they completed the procedure.  She thought it fascinating to see them insert the needle into the joint. Within 12 hours, the foot was feeling good!  In the past, I described this as a toe issue, but Anna explained that it wasn't exactly the joint in the middle of the toe---it was the joint that connects the toe to the foot. Anna has grown to greatly appreciate cortisone injections! Last week Anna described walking as painful.  This week she is back to going for runs on campus.

Thirteen days into taking the newly prescribed Plaquenil, Anna sent me pictures of a rash on her cheeks.  She described some other symptoms of side effects which she was experiencing.  She contacted her rheumatologist, who suggested that Anna stop taking Plaquenil for a week to see if those symptoms would go away.  They did.

Today we had an appointment with the retina specialist, with Anna taking no systemic

medications for almost a week and just eye drops for the eyes.  We discovered that Methotrexate had been doing a great job at controlling inflammation in Anna's eyes---even without the Remicade that we had to abruptly stop in early October. We were dismayed to discover that inflammation is back in BOTH eyes (the right eye has been quiet for years), and the macular edema is recurring in the left eye.  So what do we do now?  The retina specialist put in a direct call to the rheumatologist and left a message.  They will confer with each other to come up with a plan to control this inflammation.  (Dr. N---the eye doctor is willing to use ocular injections, although the risk of cataracts increases with the frequency of those).  For the next two weeks, she is adding eye drops.  And she told Anna to call her and even have her staff page her if she is in surgery if Anna has any concerns.

The Hershey Eye Center became a prayer room/area for me today.  As soon as Anna took the visual test, I knew that it would probably not be the best appointment.  I was praying for wisdom from God for Anna's doctors.  That prayer continues.

This journey is getting rather bumpy again---almost a little out-of-control.  But I know that Jesus remains in control.  The joy of the Lord is our strength---keeps us from drowning in worry and sorrow (although I still tend to sigh a lot as I process all of these new developments).  I just sent out some cards to some people today, and the notecards have a verse on them that kept running through my mind today:  "May the God of hope fill you with all joy and peace as you trust in Him."  I'm praying that verse over myself today. Thank you for your prayers for Anna and her doctors.