Monday, April 07, 2014

We Have a Plan . . . .

As of today, we have a plan.  And we have a little breathing room.  At Anna's appointment with the ophthalmologist this past Thursday, the inflammation was better.  A 2+ instead of the 4+ inflammation a week prior.  (ANY inflammation is not good, but a 2+ actually sounds good after a 4+!)  Anna's pediatric rheumatologist has researched the latest information available to decide between Remicade and Orencia.  The plan is to start Anna on Remicade.  Then, once her eyes are quiet, he will switch her to Orencia.  This will happen soon, but we still have some things to do, like wait for the insurance company to approve the Remicade, get a TB test for Anna (that will happen this week), and settle on a time frame for the infusion.  Anna didn't realize until tonight that this means she will no longer be taking Humira.  She seemed pleased with that.  She's glad that she can give herself injections, but it's not her favorite thing to do.

I choose to share Anna's story here, because for so many years, I have wanted other parents to know that Juvenile Arthritis does not HAVE to overtake your life.  (Things I wanted to read when Anna was first diagnosed and I wanted to have a glimpse of what life might be like in the future.)  I do have to concede that for the past few months, this disease (more the uveitis than the arthritis in the joints) has interfered with our lives a little more than we would like, although not nearly as much as some families experience.  I do believe, though, that this is just a season of life.  Although we cannot choose our circumstances, we can choose our response.  So we continue to choose to pray for those who make decisions for Anna's care, for wisdom and clear direction.  We choose to find all the things we can be thankful for, and we've seen and felt so many answers to little and big prayers.  We choose to laugh and set goals for the future.  This may be a sizeable bump in the journey, but the journey is not done yet!  Stay tuned . . . . 

Saturday, March 29, 2014

Circumstances We Would Not Prefer

I LOVE the "undo" features that come with most computer software.  It is such a relief when I am creating letters and and flyers and newsletters, changing things which sometimes become a mess.  And I can just hit "undo".  The mess goes away, and I can try a better fix.

This week, I wish there was a way to "undo" the switch to Cellcept.  But no going backward in life.  We have to pick up from where we are and move forward.

If you've read my blog posts before, you know that God has a way of playing songs in my head at times.  About two weeks ago, I remember waking up early hearing the words to "Even If" by Kutlass:

Sometimes all we have to hold on to 
Is what we know is true of who You are 
So when the heartache hits like a hurricane 
That could never change who You are 
And we trust in who You are 

Even if the healing doesn't come 
And life falls apart 
And dreams are still undone 
You are God You are good 
Forever faithful One 
Even if the healing 
Even if the healing doesn't come 

Lord we know your ways are not our ways 
So we set our faith in who You are 
Even though You reign high above us 
You tenderly love us 
We know Your heart 
And we rest in who You are 

You're still the Great and Mighty One 
We trust You always 
You're working all things for our good 
We'll sing your praise 

You are God and we will bless You 
As the Good and Faithful One 
You are God and we will bless You 
Even if the healing doesn't come 
Even if the healing doesn't come

Even If lyrics © Sony/ATV Music Publishing LLC

Since the phrase "even if the healing doesn't come" kept repeating more than the rest of the song, it felt like a forewarning in some ways.  And rightly so.  Scott took Anna to see the ophthalmologist this past Thursday.  I was home with a stomach bug.  He stopped by the house before going back to work, to tell me that  in the span of ten days (since the last appointment), Anna's left eye had gone from an inflammation level of 1+ to a 4.  (On a scale of 1 to 4 for those of you who are unfamiliar.)  Scott's assessment of Cellcept for Anna is summed up in one word:  "worthless."  Her inflammation has never been this bad.  The two doctors conferred via phone while Scott and Anna were there, but Scott asked them to call me about any final decisions.

Anna's pediatric rheumatologist called me to discuss options.  We're going to go with infusion therapy.  (Something to be thankful for---there is no agonizing over all of the pros and cons of this decision for me---it HAS to be done---I AM constantly praying for clear direction.)  The question is just the choice between Orencia and Remicade.  He's doing a bit more research and will let me know and start the necessary steps for insurance approval.  That could take awhile, evidently.  So since we need to do something before we can make infusion therapy happen (could take weeks, and most likely, more than a month), we have stopped the Cellcept and started on Cyclosporine.  Anna had responded favorably to Cyclosporine in the past, until she began to experience noticeable side effects.  But since she'll be on it for weeks instead of months, the hope is that she'll be stopping the Cyclosporine before the side effects begin to appear (more hair growth, and darker hair---like eyebrows and upper lip--, gum growth, etc.)  Anna continues to take the Pred Forte eye drops four times daily, and a dilating drop at night (to keeps those cells from sticking together when they begin to cluster).

I want my friends, family, and blog-readers to know that I believe in my loving, Creator God, and I know that He is faithful, and I know that He walks with us and loves us more than we can ever imagine.  I've said that before---many times over.  Sometimes I talk about feeling calm and feeling peace.  To be totally honest, right now I'm not FEELING much of anything (but feelings are fickle---I know---we cannot rely on feelings!).  I am human, so there are aspects of this disease and this development that strike some fear in me at times, if I allow myself to dwell on that.  There are times when I receive news such as this when I know I need to absorb and process the information (and allow a few tears to escape at times), before I'm really ready to talk about this with anyone.  There are so many things going on right now (BUSY, busy schedules around this time of year, still a lot of appointments to get to, schedules to rearrange because of appointments, unexpected stomach bugs, etc.)  When life seems overwhelming and we face even more "circumstances we would not prefer" (phrase borrowed from Priscilla Shearer from the Session 5 DVD of the Gideon Bible Study), we go with what we know, not what we feel.  We hold fast to our Anchor for the Soul, because how else could we handle storms such as these?

Saturday, March 08, 2014

His Grace Is Enough . . . . (Update on Anna, family, and questions for God)

So many ways I could begin this post:  The bottom line is the update on Anna:  the injection to the elbow worked wonders!  Within days of receiving that shot of cortisone, she is back to having full range of motion and can easily do all the normal tasks of life without having to compensate for an elbow that would not extend or bend normally.  The eyes are another story.  Despite a flurry of changes in dosages and then medication, her left eye is not responding.  It's not getting worse, but it's not getting any better.  Something different though, from previous flares--despite having Pred Forte drops four times daily, her pressures remain in normal range!  And this is after six weeks of those daily drops.  SO thankful for this, since Anna's pressures usually rise quickly even when she has been on two weeks of two drops daily.  (That was several years ago.)  

The photograph above is my view of the ophthalmologist's exam room, and I've seen it many times since January, usually every 7-10 days.  Something else to be thankful for:  the location is about 20 miles away from home.  The doctor was mentioning that he has a family who comes every other week from over 100 miles away.  And I thought Anna's appointments have been really eating into our schedule--especially her school schedule!

For those readers who, like me, want to know what happens next if the inflammation continues, the ophthalmologist says he'll give it one more month.  If it's not any better, then we need to consider a different medication.  The rheumatologist had already mentioned "infusion therapy" if the Cellcept doesn't get the inflammation to subside.  We've talked in the past about pros and cons of Remicade and Orencia.  My guess is that the infusion therapy would be one of those two. 

In the midst of all of this, I have just finished up two surgical procedures (3 weeks apart) to fix two significant issues which have been plaguing me since the end of October. Thank the Lord, I've been released from the acute care of two different doctors, and all I really need to do now is get over the "anesthesia haze" which always takes me several weeks to do. 

So a lot has been going on with the family!  I have been happy, though, to get back into a Ladies' Bible Study, and we are doing Priscilla Shirer's "Gideon" study.  This has "homework" which really has us digging deeper into God's Word and seeing what God has called us to do and be, and how He uses our circumstances to accomplish His purposes, and equips us with His strength when the tasks seem hard and dangerous.    I've also been reminded that God welcomes our questions, but there are many, many times when we ask questions which He has already answered in His written Word---great incentive to get into and really learn to KNOW His Word.

There are so many times when the Lord has spoken to me, and very frequently through songs which are playing in my head when I wake up in the morning, or one passage of Scripture which constantly pops up in various places and ways during the course of a week or two.  But this past week, He was definitely speaking through a clear but soft voice in my head.  In my Bible Study homework, we were encouraged to write into one side of a chart the questions we ask God.   And then there were a sets of Scripture verses to look up---ones that would answer many of the "usual" questions that people often take issue with Him about.  None of them really answered the two questions I put down, but we were encouraged to go back to the questions on our chart, and pray about those questions, and write down what God was saying to us (encouraging us to see if we had answers from Scripture).  So my one question was, "Why isn't the inflammation in Anna's eye responding to treatment??!!"  Every time that question even hovered in the back of my brain, I would instantly hear, "My grace is sufficient."  So instead of the question just hovering, I intentionally talked to the Lord about Anna's eye inflammation.  And the answer I knew I needed to put on the other side of that chart was again speaking more loudly in my head, "My grace is sufficient."   (That verse was no where in the homework---but definitely in my head.)

So then I go to our weekly Bible Study session (yesterday), where we watch the DVD, and this week's session was powerful and inspirational.  As Priscilla Shirer was winding down this session, I was looking in the notes of the book for Session Three, and she had several Scripture references in the notes.  I looked at the very last reference in the notes, and it was 2 Corinthians 12:9.  Since my memory for Bible verses (at least bits of them, memorized in my childhood and teenage years) is fairly decent, but my ability to remember references is somewhat lacking, I wasn't sure which verse that was.  So I looked it up, and KNEW that it was definitely there for me in that moment (thinking about Anna's uveitis all week---or the past six weeks---and anticipating another visit to the eye doctor that afternoon).

2 Corinthians 12:9  (written in red letters in my little NLT Bible)  Each time he said, “My grace is all you need. My power works best in weakness.”

So there it is.  We continue to trust God and His purposes and calling on our lives.  (When we are afraid, we will trust in Him ---somewhere in Psalms!) The doctors are doing all that they know to do  (Dr. M. was going over that out loud with us---explaining that in January he dilated her eyes, even though it was a late appointment and he hadn't planned to do that---he wanted to make sure that there wasn't something else going on in her eye, and making sure that there wasn't something he missed, with such unexpected and significant inflammation after almost two years of quiet eyes).  We continue to pray for Anna's doctors and thank God for their wisdom and knowledge.  We are continually thankful that Anna so far has experienced very minimal (if any) side effects from the potent medications she puts into her body.  We live knowing that we are precious to God and He allows some circumstances in our lives for ultimate good and to show others who He is. He holds us in the palm of His hand.  (Now how can we be afraid when we know that?)  We continue to pray that the inflammation will go away.   Until it does, God's grace is sufficient.

Tuesday, February 18, 2014

Take Another Step . . . . .

We walk by faith and not by sight we know it’s true

We say it and sing it and love the way it sounds
But none of us can even begin to truly understand
What it really means ‘til all the lights go out
And there we are nothing to hold on to
But the promises God’s made to me and you

Take another step, take another step
When the road ahead is dark
And you don’t know where to go
Take another step, take another step
Trust God and take another step

If there’s an ocean in front of you
You know what you’ve gotta do
Take another step and another step
Maybe He’ll turn the water into land
And maybe He’ll take your hand and say
Let’s take a walk on the waves
Will you trust Me either way
And take another step
Take another step

Lyrics by Steven Curtis Chapman  "Take Another Step" 
(from "The Glorious Unfolding")

This week (even just these first two days) have seemed a little overwhelming---just schedule-wise.  We have so much going on, two appointments last week were cancelled because of the Thursday's snowstorm--still to be rescheduled.  No time to fit them in this week. 

Anna has several issues currently "on the table."  Her eyes at her last ophthalmologist visit were a little better but still have a ways to go before they are clear of inflammation.  She continues with Pred Forte drops (one drop to the left eye four times daily), and a dilating drop at night.  Her pediatric rheumatologist found that the measurements he takes for her TMJs were less than they have been at the last few appointments.  So he sent a disposable measuring device home with me, so that I can measure again in another week or two, to see what kind of numbers I get.  Her left elbow has continued to be a problem.  The problems have increased over the last three months.  While she doesn't complain of pain (just some morning stiffness), she has lost full range of motion in that elbow, and it's affecting her ability to do some daily tasks (like brushing her teeth and brushing her hair and getting dressed).  She can still do these things, but in a modified way, since her elbow cannot extend fully.

We'll have to wait and see on the eyes.  It may take a few weeks for the changes in medications (we changed the dose on the Humira and changed the Methotrexate from oral to injectible) to take affect.  We go back to the ophthalmologist next week.  The TMJs---I don't really know.  More injections are probably not an option.  For right now, if the measurements continue to be a concern, an MRI may be in order, even though Anna's new braces may affect the reading of an MRI.  We'll cross that bridge when we come to it.

As for the elbow, Anna's ped. rheumatologist decided that he would inject that joint today.  That went fine (as fine as injections can go!).  Anna's pretty calm and easy-going, not excitable or prone to drama, which is helpful.

So Anna went back to school today with teeth that hurt (from getting braces on yesterday at the Lancaster Cleft Palate Clinic---continue to LOVE that place and the people there!), and a sore elbow.  (She has a doctor's excuse for gym and band for a few days, until her elbow absorbs all of that medication.)

I've been thinking that life has been very full lately, with many things (mostly health-related, with both Anna and me) that are beyond our control.  I've also thought that this full, sometimes overwhelming season of life CAN have a good side---no time to sit and think about all of the ins and outs of what's going on, no time to sit and worry about what may happen if things get a little worse rather than better.  Really, just getting through these moments and days and weeks by taking another step, and another step---walking by faith and not by sight, and trusting God no matter what.

Friday, January 24, 2014

In Anna's Own Words . . . . .

As posted on Anna's Facebook page on January 23, 2014:

A recent problem has emerged involving my arthritis in my left eye. Instead of listing all of my troubles and problems at this moment I choose to go with the blessings -

Thank You Lord for
-My sight, I am not going to be blind any time soon.
-for Doctors, knowledge, and medicine.
-Messages you send me through music
-my Mom and Dad 
-Your Guidance and Help and Direction 
-Reading glasses
-a Warm house
-eye lids*
-time off so I could study this past week so I don't need to strain my eyes tonight trying to see tiny print*
-and knowing what is going to happen when I don't, because I am blind to what will happen in these next very, VERY busy weeks ahead. You're going to see me to the end regardless.

[*Dr M. decided to dilate Anna's eyes to get a better view of what was happening, so although we hadn't planned on this, Anna's pupils were dilated for the rest of the afternoon and evening, making it a little difficult to see and focus---so she was extra-thankful for eyelids and reading glasses!}

2014 May Be An Adventure!

I have a feeling that this new year will be one where we gather up our courage, hold firm to our "Anchor for the soul," and continue to plod along on this JA journey.  Since we have to go through this at all, I'm praying that at least some of you will be encouraged or informed because of our journey.  At the very least, I pray that we can be an encouragement to hold on to HOPE, seek peace, and know that you are not alone. 

Anna's first appointment for the new year was last week -- with Rusty (Dr. Long--he prefers to be called Rusty) at the Lancaster Cleft Palate Clinic, where she had bands put on her molars.  Next step in this process will be to have her wisdom teeth removed, as well as her four "first molars."  We meet with a local oral surgeon in mid-February---that's the earliest I could get.  We need to wait, anyway, for those teeth to be removed, until after the County Band Festival (next weekend) and District Band Festival (the following weekend).  She'll have brackets put on in mid-February, with jaw-reconstruction surgery in sight for spring or summer of 2015.  We continue to feel an overwhelming peace about this process and this team---which is really good, since we're traveling almost an hour for orthodontic work, when we have a multitude of orthodontists who are closer (but they don't work as an on-sight team like Rusty does with the other doctors/specialists associated with the Lancaster Cleft Palate Clinic!).

In other news . . . . sometimes I "hear" God speaking in many ways, and the other day, I happened to see Psalm 112:7 on Pinterest, and it grabbed my attention.  "They do not fear bad news; they constantly trust the Lord to care for them."  While I've learned not to put too much stock in premonitions nor to worry about things that may or may not happen, I thought about this verse a lot this past week, realizing that I spent many years (maybe even decades?) being fearful of bad news.  I want to be different---I NEED to be different if I truly claim to have a relationship with my Creator and trust His love and care for me and my family.  I want to live in such a way that I live my faith, and not just speak the words.  So if I choose to do that, I need to choose to trust the Lord, even when some days seem to bring one bit of bad news after another.

How grateful I am that the Lord had given me this verse for the past week.  Yesterday was an interesting day---from trying to tie up a lot of loose ends at work before taking next week off, and getting a phone call to tell me that some pre-admission labs for me were rather worrisome to the surgeon's office and could I please come in to have more labs done to make sure I could move forward with surgery---and having a small window of time to take care of that before picking Anna up to take her to Hershey for an eye appointment.  (Thank the Lord there was so much going on that I really didn't have much time to think and worry that day---besides watching the clock and thinking about and praying that I could get my work done and then get to the outpatient lab in one town and back to the high school in our hometown in time to get Anna and get to Hershey in time for the appointment---all of that worked out perfectly!)

We arrived in Hershey in such good time that we were able to stop by the lab and take care of labs for Anna (standing order for labs every 2 months) before heading to the ophthalmologist.  Anna had mentioned some concerns about her vision in her left eye a few weeks ago.  I wasn't alarmed, because she's never had any symptoms of uveitis, so I was thinking that maybe she had some sort of reaction to the Pred Forte eye drops.  But long story short, her left eye has had an unexpected and significant flare in just the past few weeks (we saw the ophthalmologist just five weeks ago, and she had one or two cells at that time---now she has at least 200 white cells).  So now she has symptoms (that can be a good thing . . . .).  The plan (discussed via phone between the ophthalmologist and the rheumatologist with Anna and I in the room to answer any questions) is to increase Humira, switch from oral Methotrexate to injectible Methotrexate, and increase the Pred Forte drops to four times a day for a week---we go back to check on things next Thursday.

It's still possible to find some good things instead of focusing on the bad.  Since Anna was telling me (right before yesterday's appointment) about her continued symptoms, and her research on-line to figure our her symptoms, I was mentally prepared for a not-so-great appointment.  Poor Dr. M. had challenges with his last four patients (Anna made patient #5 who required an unanticipated more detailed exam and figuring out a plan of action)---so he was running behind schedule.  Which meant I had more time to skim through magazines and pray and settle my mind and remind myself to TRUST and not worry.

This also becomes a challenge (as a mom) as Anna gets older---when she was first diagnosed, it was me who had to work through all of my feelings.  But she's now a teenager and has definite feelings of her own.  So how is she handling this?  I'll post that next.  (She told me that I could copy and paste her Facebook status from yesterday on my blog). 

Thursday, December 19, 2013

Some Updates

We've had a few appointments since I last posted, so I have a few updates to share.  We are very pleased and thankful that the appointment with the ophthalmologist showed that the inflammation in Anna's left eye is down to a "trace," and her pressures were acceptable, so she is down to one drop of Pred Forte in the left eye daily.  Not crazy about little bumps in the road, but so thankful that maybe this is just a blip and will soon be a memory.

Anna's elbow is still a bit of a bother in the mornings, but we've had discussions (between Anna and myself) about it.  Dr. G. (the pediatric rheumatologist) had suggested that she could take ibuprofen up to three times a day to help with that, but she doesn't want to do that at this point.  I told her that she needs to talk to Dr. G. about the pros and cons of just living with the pain vs. taking the ibuprofen.  (Or he may even adjust her other medications.)  If this continues, I know it will be a topic of discussion at the next appointment in February. (In less than two years, she will be considered an adult by the medical community, so she is taking responsibility for listening carefully at doctor's appointments and being part of the decisions, and being responsible for her medications---she's always been intrigued by the body and medical stuff, so it doesn't take great effort for her.)

I've included Anna's panoramic x-ray from the Lancaster Cleft Palate Clinic.  You can see the vast difference in the left vs. right TMJs, and this is why reconstructive surgery is necessary for Anna.  So we are "on the road" for this new journey---which will take about two years.  One year for the orthodontic preparations, and then surgery after that, and then some post-op orthodontics and follow-up.  So many feelings and emotions---a little bit of trepidation in stepping out to have major surgery done, knowing that it will bring temporary pain and weeks of healing, the little bit of excited anticipation at taking steps to fix something which is damaged.  But I have to tell you that the overwhelming feeling I have is PEACE in this decision.  And this is huge, because as I constantly pray for wisdom (knowing that God promises to give wisdom in abundance when we ask, as found in the first chapter of the book of James) and direction on this JRA journey, I do my best to listen to God, who hardly ever speaks audibly to me!  But He has so many other ways which I've learned to recognize.  And so with this group of doctors at the Lancaster Cleft Palate Clinic, and the answers to my prayers about the cost of the orthodontics (I was gathering information and gearing up to "present my case" to the insurance companies, only to be told that Anna's supplemental insurance through the state will cover all of her orthodontic care for this surgery---what a huge blessing and answer from the Lord!), we have experienced so many "green lights" as we've taken steps to see whether and when we should take steps in this direction.  And that peace that I spoke of earlier has been so very present every time we think about this and pray about this and make the trip to Lancaster.  Looks like we'll be doing that a little more often in 2014.

Friday, November 22, 2013

New Stuff, MANY Thoughts (I've saved them up!), and Listening to "The Voice of Truth"

 So much has happened in life since I last posted . . . .and we are overdue for an update here (this will be a LONG post!).  Anna became a first-time aunt in September -- one day after her 16th birthday!  We've been to Tennessee and back for a visit.  She also now has her driver's permit, so she and her dad are fitting in driving practice as our schedules allow.  (Scott is a much better and more patient teacher than I!)

We went through August, September, and October without many appointments, and that was a nice break/reprieve.  However, November and December seem overly FULL of appointments now!  Anna saw her pediatric rheumatologist last Friday, and today was a visit to the pediatric ophthalmologist.  I know that many scour the internet to find "real life" stories about children and teenagers with arthritis---I know I did back in 1999 when Anna was first diagnosed.  I wanted at least a vague picture of what might be in store---what kind of life could I hope for for my youngest child?  This type of thinking and questioning just comes with the struggle---the grieving process when you have a child with a chronic disease, when it seems like every expecting parent will just be happy "as long as it's healthy!"  Believe me, you CAN have a good and joy-filled life, even if you end up dealing with an on-going illness or disease.  So when we have good news, we share.  When we have not-so-great news, we also share.  I'm a realist.  This is life. We deal with "what is."

While I realize that in the early years it was easy for me to whine and sometimes wallow as I worked through my feelings, I don't want to do that anymore.  I don't want or need people to feel sorry for us.  Everyone has something that they deal with.  One of our issues in our family is Juvenile Arthritis.  I do appreciate prayers, because I know for a fact that prayer changes things---and usually changes us.  I know that God could choose to heal Anna completely, but I also know (because He told me early on, and He has given Anna some intuition, as well), that complete healing is not His plan for us in this journey at this time.  We've been blessed with so many years of mild arthritis and uveitis that was finally brought under control when Anna started Humira.

A month ago Anna mentioned that her neck was stiff.  So we mentally filed that information, checked in with her periodically about that issue, and knew that we needed to share that information with her rheumatologist.  On the morning of her appointment, she also mentioned that she's been having some trouble with her one elbow.  Anna rarely experiences severe pain, even with active arthritis, but she's noticed that her range of motion in her neck has decreased, as well as in her left elbow.  They don't hurt, she says, unless she tries to move her neck or elbow past the point of where it wants to move.  Nothing really significant or serious---but enough that it feels like a different direction (or maybe just some added bumps) in our JA Journey.  We'll deal with it.  For now, Anna can take ibuprofen (up to three times a day) if she feels like she needs it. Her TMJs are still an issue.  The last MRI showed the right side looks a bit better, but the left side still has mildly active arthritis.  Today, we found out that after almost eighteen months of clear eyes, she has mild inflammation in her left eye once again.  So Pred Forte eye drops are prescribed (twice a day), and we go back in two weeks to see if that clears it up. 

So what does a mom do when the road ahead looks like it may be more challenging?  I admit that it's easy to let the worry take over---worry for Anna's future, worry that new joints are being affected by arthritis (it was a lot more "comfortable" when we were only dealing with only the knees and TMJs, with the eyes thrown in for good measure).  But as I've struggled to know the appropriate response, I've been remembering a verse that I've been meditating on for several months:  "Be patient in trouble and keep on praying."  (Romans 12:12 NLT).  I've been hearing songs on the radio that constantly remind me that I can trust God, that He is with us always.  There's an older song that keeps coming to mind---a song from Casting Crowns, called "The Voice of Truth."   I know that we "are not fighting against flesh-and-blood enemies, but against evil rulers and authorities of the unseen world, against mighty powers in this dark world, and against evil spirits in the heavenly places." (Ephesians 6:12 NLT), so whenever I hear the whispers of worry and doubt, I am going to choose to listen to "the Voice of Truth." (link to video below)

Besides the lyrics of this song, what has "The Voice of Truth" been telling me over this past week when thinking and worrying begin to take me to mental places where I don't want to go?:

"For you know that when your faith is tested, your endurance has a chance to grow." (James 1:3 NLT)

"But the Lord stood with me and gave me strength."  (2 Timothy 4:17)

"I have made you and I will carry you; I will sustain you and I will rescue you."

"Be strong and courageous.  Do not be afraid or terrified because of them, for the Lord your God goes with you, He will never leave nor forsake you."  (Dueteronomy 31:6)

"God can restore what is broken and change it into something amazing.  All you need is faith."  Joel 2:25 

And especially this week (I love the visualization of walking through water that seems to be getting deeper and deeper---and knowing the God is with us in the midst---sometimes that's just how life seems)  From Isaiah 43, beginning with the second part of verse 1 (bold emphasis at the end is mine, because that verse and those words seemed to jump out at me when I was reading this passage):

  “Do not be afraid, for I have ransomed you.
    I have called you by name; you are mine.
When you go through deep waters,
    I will be with you.
When you go through rivers of difficulty,
    you will not drown.
When you walk through the fire of oppression,
    you will not be burned up;
    the flames will not consume you.
For I am the Lord, your God,
    the Holy One of Israel, your Savior.
I gave Egypt as a ransom for your freedom;
    I gave Ethiopia and Seba in your place.
Others were given in exchange for you.
    I traded their lives for yours
because you are precious to me.
    You are honored, and I love you.

But He's also reminded me of the verses I found back in 1999, from 2 Corinthians (NLT):

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

So we gather up our courage, hold tight to our faith, remember that we are precious to God, keep praying in trouble, and know that God is guiding us, and that His timing is perfect.  I'll update again soon---Anna has an appointment with the Lancaster Cleft Palate Clinic people after Thanksgiving.  We'll see what they say about Anna's active arthritis and the time frame for orthodontics and eventual jaw reconstruction. 

Sunday, September 08, 2013

Moving Right Along . . . . at a measured pace . . . .

We've received good news since I last posted.  Anna had an appointment with the ophthalmologist in mid-August.  Her eyes remain clear of inflammation---for over a year now!  Since last June!  Oh, the joy of that burden of concern being lifted off of our shoulders (at least for the present!).  I was asking the ophthalmologist some questions about Humria and such----because of Anna's TMJ issues, it's up to the rheumatologist to make decisions regarding the Humria and Methotrexate (the ophthalmologist would only recommend changes when Anna's uveitis was an issue---he doesn't prescribe systemic medications).  And can I tell you that I really am not eager to make any sudden changes?  We haven't seen evidence of any side effects from either of the medications (she's been on both for years), so I'm comfortable with them for now.  Sometimes (for me, anyway) I like to relish the peace which comes from clear eyes and quiet joints---at least for a little bit---before gathering up the courage to make any changes, especially when it seemed to take so long (all those years of puberty) to get everything under control.

I feel like we're taking a measured approach to the upcoming orthodontics and reconstructive jaw surgery.  I've begun making phone calls to determine insurance coverage for the orthodontics.  According to my member handbook for the health insurance, my interpretation of the wording under "Patient Protection and Affordable Health Care Act of 2010 Amendment" would indicate that the orthodontics should be covered.  Now it's a matter of getting the content of these two pages to the right people to debate my point.  Still working on that.  (Apparently, the Authorization Department only allows doctors to contact them and debate the issues----not the patient or the patient representative.)  Measured approach . . . . constantly remembering that in the midst of this battle, God tells me "we are the aroma of Christ . . . "  (2 Corinthians 2:15-16) so I need to be sure that I approach this in such a way that I am reflecting character qualities of God and His indescribable love for us (because that's what God calls His children to be and do), and not go to battle with sarcasm and anger.  God calls us to KINDNESS, and that begins with me, in every situation.  So in the words of Disney's Thumper, "If [I] can't say something nice, don't say anything at all."  Still working on that (for those who know me well and know when I've said things I shouldn't have!).

So while we're working on the insurance end, I've also been in contact with Anna's pediatric rheumatologist to discuss getting an MRI before we see him in November, so that we can discuss the results, see if the disease is quiet in the TMJs, and see if we can move forward with the Lancaster Cleft Palate Clinic.  He plans to schedule an MRI in October.

Until then, Anna keeps busy with cross country season, bassoon lessons (practicing for District Band tryouts), and youth group activities.  (Plus waiting for her first nephew to be born any day now!)  Life goes on, and we are determined that Juvenile Arthritis not define our lives---it's a part of Anna's life, but not who she is.

Monday, August 12, 2013

Ah! We Have Some Direction! . . . .

So we had the appointment at the Lancaster Cleft Palate Clinic last Tuesday, to discuss Anna's TMJ issues (past active arthritis; significant damage to the left TMJ).   What a GREAT team of doctors and staff---and they are indeed a TEAM.  The primary doctors appropriate to Anna's care were the oral surgeon, the orthodontist, and the plastic surgeon (there were other specialists available, but Anna did not need an audiologist nor a surgeon who specializes in dental implants).  One of the best aspects of the appointment was their candid discussion and the time they spent with us---we didn't feel rushed at all, and they wanted us to understand everything they were saying and recommending and why (I had shared a little bit of our experience with the doctor in Philadelphia and why we had no interest in returning there -- very rushed, didn't elaborate on the reasons behind her recommendations, etc.---left us with nebulous information and no concrete answers).

While these doctors are familiar with the TMJ replacement procedure, but they do not recommend that for Anna unless her TMJs (at some point in the future) stop functioning altogether (and they explained all the reasons why, which I really appreciate and understand).  They DO feel that Anna is a good candidate (and in need of) jaw reconstruction (and orthodontics, which go along with jaw reconstruction surgery).  They would reconstruct both the upper and lower jaws.  This would entail probably about two years of orthodontics, extraction of wisdom teeth, jaw surgery, and then a few months to a year of orthodontics to finish up.   They also seemed very pleased that Anna has just finished up physical therapy to strengthen the muscles which help support the TMJs (they even asked for the name of the physical therapy group, because they said they have not often found physical therapists who have experience with TMJ issues).

For the past few years, I have been thinking about Anna's TMJ damage, wondering what to do and wondering about the timing of everything---and praying fervently for guidance and direction, because I didn't have any answers, nor did I have enough medical knowledge to feel that I had a good handle on the issue or ways to deal with it.  I also found myself overthinking the entire thing and intentionally putting it all out of my mind for weeks at a time---and purposely choosing not to worry or fret (not always easy).

Have you ever had a day/week/moment when things and ideas and thoughts all seem to fall into place and you know deep in your heart that this is what needs to happen?  That's how I felt last week during and after the appointment.  Anna did, as well.  After meeting with the Philadelphia doctor, she said that she didn't feel that she needed or wanted major jaw surgery any time soon.  After this appointment with the team of doctors, it's almost as if she's ready to begin the process tomorrow!  We had a choice to use an orthodontist closer to home (Lancaster is an hour away), but Anna instantly said, "No.  I want to do it here."  (We like the orthodontist we've used in the past, but Anna loved the team approach and the fact that these doctors communicate so well with each other---and promised to keep her pediatric rheumatologist informed---we're usually the ones who are telling one doctor what another doctor has said or recommended).  The only aspect that makes me hesitate just a little is the fact that insurance may not cover much of the cost of the medically necessary orthodontics, and they are EXPENSIVE!!!  (The doctors seemed certain that the surgery will be covered, since Anna has a diagnosis of arthritis and significant damage.)  Much more expensive, even, than the "phase 2 cost" which was quoted to us a few years ago from the original, local orthodontist, and at the time I thought that price was rather exorbitant.

So . . . . where do we go from here?  First and foremost, I continue to pray, and I've been in awe of glimpses of God at work in little and big ways in the process so far.  As long as I continue to see Him working and opening doors of information, we continue to walk in this direction.  The orthodontist said that he is willing and able to write to the insurance companies (Anna has primary insurance and secondary insurance through the state, because of her chronic condition)---to explain why the orthodontics are medically necessary.  Anna needs the surgery, and in order to have surgery, she has to have orthodontics.  The billing clerk was less than optimistic but said we could try if the doctor said that he would write letters.  The team of doctors also talked about needing to know that the arthritis in the TMJs have quieted down for the most part.  So at this point, I'm not sure if we will need and want one more MRI before the orthodontics are put in place (once she has all of that metal in her mouth, we will be unable to do MRIs).  That will be up to her rheumatologist to decide and order.

On a less pressing note, the Lancaster doctors told Anna that they couldn't promise to be finished the process before senior pictures (she's entering 10th grade), but possibly before her senior prom.  Anna has already decided (that afternoon) that for senior portraits, she just wants a picture taken for the yearbook, and we can wait for a more extensive photo shoot after the surgery is done and the braces are off, even if it's after graduation.  She said she's been thinking a lot about what she might look like afterwards, but she has no idea (hence, the patchwork picture at the top---unsure of how her face will look once everything is "put back together).  The oral surgeon was studying Anna's face carefully (Anna told me later).  He says that whenever he looks at patients, he sees visions of what they will look like with reconstructive surgery.  He wasn't kidding, and I believe him---he's that sort of person.

Thanks for your continued interest in Anna's JRA Journey.  We are always grateful for your thoughts and prayers as we travel this unfamiliar road, and we are also grateful for the love and support we feel from so many in our local and internet communities.

Saturday, August 03, 2013

Waiting to See Where this Journey Takes Us Next. . . . .

We had an appointment with Anna's pediatric rheumatologist about two weeks ago.  We're still keeping an eye on the TMJs, and the next step is to see a group of doctors at a clinic in Lancaster.  It's actually a "Cleft-Palate Clinic," but Dr. G. has referred several patients with TMJ arthritis issues to this group of doctors.  So it's Anna's turn to be evaluated there.    That appointment is on Tuesday morning.  (So I thought I'd better update my blog now before I have another lengthy update!)  All of the options for addressing Anna's TMJ issues (significant damage to the left side because of past active arthritis) have been swirling around in my mind for quite some time, and it's been like looking at pieces of a puzzle being unsure how they all fit together to form a picture, especially considering other activities and interests in Anna's life.

I was so very grateful to have a few of my swirling questions answered at that appointment.  I wasn't necessarily anxious before the appointment, but I did leave with a real sense of peace.  (So very thankful for that!).  No need for a set schedule for these upcoming possibilities for dealing with the TMJ issues.  If we're looking at surgery, they would probably need to wait a little bit anyway, since they need to be sure she is finished growing.  So her ped. rheum. advised her to enjoy her years of high school, work to audition for District Band (playing bassoon), and don't worry about possible surgery (and subsequent healing) until maybe after graduation.  (Anna will be a sophomore this fall, so we have a little bit of time.)

I had another question about Anna's future (another one that's been swirling around in my head with no real answers).  Our high school requires students to begin thinking about possible future career choices, and three related job shadows are required before graduation.  So Anna has been working to narrow down her passions and areas of interest.  But then I had a question about studying or working abroad---is that possible, and how does it work when she is on a biologic medication (when it's delivered by UPS to our doorstep once each month, and then refrigeration is required)?  Dr. G. had an answer for that, as well!  He's already had at least one patient who has studied abroad, and her medication was delivered to her there.  He did suggest that we stick to Europe or South America, and probably not many parts of Africa or other third-world areas.  If Anna decides to study or work abroad at some point, he will put me in touch with this other patient and parent.

Dr. G. did mention that it's been several years since Anna has had any arthritis flares in her knees.   He said that if it weren't for her eyes (although they've been clear of inflammation for the past year) or her TMJs, no one would ever know she has arthritis.  I know the Anna has a mild case, and because she has such a high pain tolerance, she doesn't present like a vast number of JA children, teens, and young adults.   Did you know that it's very possible to be so very thankful, and yet feel a little guilty at the same time?  I know that's a natural reaction!  I've read similar posts from other JA moms---instead of "survivor's guilt," it's more like "my child's doing so well" guilt, when we know others are suffering.

Anna finished her iontophoresis sessions and her physical therapy sessions.  We were able to do over half of the iotophoresis treatments at home.  The physical therapist was working on some posture issues with Anna---telling us that it would help her TMJs.  She still occasionally does some of the exercises, and she didn't mind the few sessions with Bob the Physical Therapist.  He would wrap her neck with heat for a little bit, stretch her neck and back muscles for a bit to loosen them up, and then do some strengthening exercises.  For the last session, Anna said it was definitely like a workout!

Just a note to anyone who may end up with the prescribed treatment for the TMJs---it's relatively new, and the insurance companies have no clue what it is we're doing, so they aren't into covering the cost of the pads ($10 per pad---2 pads per session---8-10 sessions), and they didn't cover the cost of the medication that I needed to get from the pharmacy for the home treatments (they did cover the cost for the medication delivered to the PT office).  Maybe this will change in time---the ladies at Dr. G.'s office tried explaining everything to the insurance companies, and none of them understood, and refused to cover those costs.

We'll see what Tuesday brings.  We've had other things going on in our extended family that has taken up time and energy, and we've spent a lot of time praying over those issues.  I haven't been focusing on Anna's upcoming appointments, and I haven't been anxious about it at all, so it's not been burdening my heart.  However, there were a few details that needed to be worked out (a referral was required by Anna's secondary insurance, which seemed unusual to me---they've never required one before for any of her Hershey visits).  BUT, this requirement ended up in a conversation with the managed care specialist at our family doctor's office.  That conversation was interesting, because it was one of those God-moments, as she explained several things that happened---extraordinary perfect timing with people being in the right place at the right time because they were exactly the people she needed to talk to, etc.  I have no idea why all of this is necessary, but it all caused me to see how God is going before us---putting various people into just the right place at just the right time to ease the way and take care of some of the details.  And then the managed care person was also warning me that the insurance companies usually drop everything like a hot potato when anything "TMJ" is diagnosed---they won't cover ANY kind of treatment for TMJs.  Curious, because I know that Dr. G has already had several patients go through with this clinic and this procedure, and surely they didn't do it without any insurance!?!  (Maybe there's a different way these doctors code things to show that this is NOT cosmetic treatment, but treatment that affects a person's health and well-being?) I don't know, and I guess we'll get answers on Tuesday.  But as I was reminded (from a recent children's sermon at church, and a song that's been going through my head), we have a God who goes before us---our Rock and our Shield!  In troubled times He will provide, and we will not want.  No matter what Tuesday brings, we will trust.  (I'm also so very thankful that Anna is so mature in so many ways, so not hung up on her looks---but more concerned about her heart and who she is on the inside, and who God wants her to be.)

Such a long blog post!!!  If you have made it to the end, I very much appreciate your interest and your prayers for Anna and for our family.  THANK YOU!