Saturday, June 10, 2017

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!)

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
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.


Tuesday, April 11, 2017

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







Thursday, March 09, 2017

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.   

Wednesday, February 22, 2017

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.
 



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
© CAPITOL CHRISTIAN MUSIC GROUP
For non-commercial use only.

Thursday, January 19, 2017

Still Cautiously Optimistic . . . . and navigating adulthood


It's was the first week of October 2016 since Anna had her last infusion of a TNF inhibitor.  And her eye remains clear of inflammation and any swelling as of ten days ago. That's three months with her health pretty much holding steady.  She still takes Methotrexate and Leucovorin as well as Pred Forte eye drops and Prolensa eye drops.  So another inward sigh of relief.  We have monthly appointments with the retina specialist to keep a close watch on the eyes.  (our appointments with Dr. N. are already scheduled through May)

Anna continues to do well in college, having begun her second semester as a full-time, first-year student.  There have been some things along the way that are a part of navigating adulthood while having a chronic disease. Since my purpose in keeping this blog is to help others who are traveling similar journeys, I was thinking that there are key aspects which we as parents need to prepare our young adults for, and to encourage them along the way.

One tip for college students:  It's a good idea (if not essential) to register with your college's Office of Disabilities.   Anna is still working on this (it's a process, requiring a letter from your doctor, etc.), but she's realizing the value.  We've been told that the awesome people in this office will help advocate for Anna with professors and classes and in her work study position when necessary.  While Anna's overall health is not bad, she still has frequent absences for doctor's appointments (which even understanding bosses and co-workers may begin to question when a person doesn't look sick).  

The Office of Disabilities will also be helpful when other situations are encountered, and this brings me to another tip for parents.  It's absolutely necessary that our young adult children know which immunizations they are not allowed to have.  Anna does know this information, but she has been up against a situation where people are questioning why she doesn't have the varicella (chicken pox) vaccine and Anna was feeling some pressure from them.  She has been working to gain approval to volunteer at a hospital (part of a requirement for her major and for a course she is taking this spring). Part of the process was to have a physical with the hospital's Employee Services department.  The nurses there (the same huge hospital system where Anna's doctors are in practice) did not understand why she could not have these vaccinations.  Anna confirmed with me about the varicella vaccine, and I urged her to get a letter from her adult rheumatologist to put in her file (that's what I did when we had a similar situation with the middle school nurse years ago). I also urged her to "stand FIRM" under the pressure in these situations for the sake of her health.  

I spent many, many years trying to ensure that everyone (multiple caregivers and school personnel) were on the same page.  Now it's Anna's turn to navigate this path, with the added pressure of college life. (This aspect of parenting---the stepping to the sidelines and encouraging and cheering on the young adult child while allowing them to take the driver's seat---is an adjustment, and not always easy, but essential for their successful transition into adulthood.  I spend a whole lot of time talking to Jesus about this!)

Despite these challenges that arise, Anna still loves college.  I love to hear that she is having fun with friends in the evenings and on weekends.  I love to hear when she receives some good news and exclaims, "I'm going to happy for at least a WEEK!"  And I'm glad that she still uses me as a sounding board.  (We use the Voxer App on our phones, and she messaged me tonight just to talk through some scheduling issues she's facing.)  I love that she remains close to her older siblings.  She and her brother took a trip to New York to see one of their favorite YouTube people: Olan Rodgers.  She plans to visit her sister and brother-in-law and nephew in Nashville over spring break.


I was just telling Anna tonight--sometimes when I think back over situations, knowing that we've prayed and prayed for God to guide and direct us, I can really see that He certainly has in so many situations.  So when other situations come up and we pray through them and work through them and continue to take steps in the journey, we can be confident that He is with us, and remember that He has promised to work everything for good, because we love Him and are endeavoring to follow His calling.





Wednesday, November 30, 2016

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.

Monday, November 07, 2016

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.