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.