And the Journey Gets Interesting . . . .

(This is going to be a LONG blog post!  I'll warn you!  Lots of thoughts today.)

Ah!  How I love the ways God speaks to my heart in advance of "bumps in the journey."  I'm involved (have been for a few years) with a great ladies' Bible Study, and this week, when I began my homework, two thoughts from Lisa Harper, the author of our current study,  jumped out at me---resonated with me . . . . 

"A huge difference lies between pursuing God's heart and seeking gifts from His hands.  Between feeling sincerely grateful for divine blessings and feeling like you deserve to be blessed . . . . . . ."

                         and then 

"The true opposite of arrogance is security.  It's the deep-seated confidence that God holds us in the palm of His hand and nothing can separate us from His love."   *from "Malachi:  a love that never lets go" by Lisa Harper, published by LifeWay Press, Nashville, TN  2012

Pursuing God's heart and security.  I'm learning to do the first and to really understand the second.  So I began this week feeling sincerely grateful for all the blessings in our lives and feeling secure and anchored in God's love and care for us.   That's the best place to be mentally and emotionally when there are so many areas in life where I also feel that that the Lord is saying to me, "Pay attention, here!  Focus on the tasks at hand---now is not the time to have the 'cruise control' on!"  (know what I'm saying?)

So we head to Hershey today for Anna's appointment with the pediatric rheumatologist---it's been about four or five months since we last saw him.  We were able to give him the good report on the eyes from the ophthalmologist, and both were agreeable to changing Anna's Humira dose from once every ten days to once every two weeks.  Good news!  He did say that from his experience, it seems that once young people get through puberty, the eyes seem to settle down a lot.  Makes sense to me---the onset of puberty was when I noticed that both the eyes and the joints seemed to become issues again for Anna.

And then we discussed the TMJs.  Anna had been noticing that there are times when her jaw locks into place momentarily, and sometimes it shifts.  When the doctor was examining all of Anna's joints as he usually does, he manipulated her jaw and asked questions, and found that her jaw shifted a bit as he did that (more on the one side than the other).  I don't recall that happening at any previous appointment and joint-check.  Her last MRI was in early August, and the results indicate that at some point, when Anna had active arthritis in the TMJs, the inflammation has caused the joint to fuse.  But Anna has continued to use her jaw (to eat, talk, etc.), which has caused a probable fracture (besides the deformity of the fused joints).  Anna's case is not severe, and she's not at the point where something HAS to be done (she can still eat and talk---the TMJ issues which she experiences are occasional---not constant).  However, it now seems advisable to have an evaluation by a doctor in Philadelphia.  Evidently, he's the "go-to" specialist on the East Coast for TMJ replacements.  But Anna heard Dr. G. say, "Just because you go to see him doesn't mean that Anna has to have immediate surgery."  In fact, it's not urgent.  It's okay if we just make contact and strive to make the appointment during a school break or even sometime this summer.  Dr. G. has referred other patients who had issues much more severe than Anna's.

After we consult with this specialist, and after we see Dr. G. again in March, then he's going to refer us to another specialist at Hershey Med who does a lot of work with the TMJs and orthodontia.  But we're going to take one thing at a time.  

And so the journey gets interesting again.  We get to learn a whole lot again.  We get to meet more specialists and be thankful that God has given them so much knowledge and intelligence.  Although we don't personally know anyone who has been on this particular road before, it sounds as if Dr. G. has other patients (and their parents) who have, and I told Anna that I'm sure he would be glad to connect us if we feel at some point that we want to talk with someone who has experience with this.

So for now, we continue to follow this path step by step, secure in our faith and the peace that comes from knowing that we are never alone on this journey.

Still Just a Trace . . . . .

Our journey continues, but we're pretty much on an even keel.  Anna had an appointment with the pediatric ophthalmologist about two weeks ago, and her right eye is clear of inflammation.  The left eye is ALMOST clear--the doctor thinks there's just a trace of inflammation---almost too minimal for him to see.  He's willing to have the Humira decreased if the pediatric rheumatologist is willing.  We visit the pediatric rheumatologist next Tuesday.  At that appointment, we'll hopefully get the results of Anna's MRI on her TMJs.  We haven't yet heard about that, but it's okay (if I were worried about it, I would have e-mailed or called earlier)---I know from past discussions with the doctor that even if Anna continues to have active arthritis in the TMJs, there needs to be a lot of thought and care regarding the frequency of injections.  Over the long term, too much cortisone injected into any joint can affect the tissue, and cause other problems.

In many areas of my life, I've been thinking a whole lot about trust . . . . the people I trust, the people I don't trust, how I react to both groups, etc.  I am so glad that I'm at a place in my life where I feel that I can trust Anna's doctors---not to be perfect people or to make the perfect decisions, but to make wise decisions, and to know that they are carefully considering and weighing our options for Anna (with a whole lot more knowledge and intellect than I have myself!).  I continue to pray for them as they make decisions for us to choose from (and they do give us the background information and pros and cons we need to think about those decisions---I'm thankful for that!).  I pray for our family to know the direction which we need to go when various options arise, and I am so very thankful to God that Anna's quality of life is almost as "normal" as a teenager's life can get (if you don't count the Humira shots every ten days and the Methotrexate and Leucovorin pills she takes each week).  God has used this journey for her to develop in her a compassionate heart for people (among other character qualities).   Our Creator has promised that He can use any situation for good for those who love Him---there's always some joy to find in the journey when we have a solid Anchor for the Soul!

"Normal" Life for the Next Ten Weeks, at least . . .

Our summer is coming to an end, and it'a been an extremely busy one, with four weddings to attend.  While that meant some fun events and quite a bit of time spent with family and friends and traveling, it also made the summer seem to fly!  Cross-country pre-season training begins on Monday, and school starts two weeks from then.  Anna will enter the high school as a freshman this year.

Since I last wrote an update, Anna has had an appointment with the rheumatologist, another MRI of the TMJs (no results yet), and this morning she had an appointment with the ophthalmologist.  The rheumatologist appointment was basically uneventful (that's a good thing!), except for the fact that Dr. G. has decided that Anna should really have routine MRIs every six months, given her history of active arthritis in the TMJs (hence the MRI last week).  Our insurance covers those costs (thank the LORD!  they are expensive!), and since her arthritis is mostly asymptomatic, I welcome the MRIs, because then we have a better picture of what's going on.

That also paves the way for some other decisions to be made.  While Anna needs orthodontic work, she cannot have a lot of metal in her mouth to have MRIs done.  Since I now know that she will have regular MRIs, I can discuss this issue with the orthodontist and see if there is anyway to improve some of Anna's bite issues and teeth issues with something that is not cemented to her teeth.  I have no idea if that is a possibility, but it at least gives me a place to begin a conversation with the orthodontist and discuss some possibilities.

Dr. G. also mentioned the possibility of decreasing the dose of Humira (depending on how the next few months go).  That will depend mainly on the uveitis.  Good news on that front this morning!  Anna's eyes are totally clear of inflammation once again!  GREAT way to end the summer and start the school year.  No more daily eye drops, at least for the next ten weeks, when we have the next eye appointment.

So for Anna, for the next ten weeks at least, life will be relatively normal (save for the weekly Methotrexate, twice-weekly Leucovorin, and Humira every ten days).  While years ago I would have spent time thinking (and worrying) about all of this powerful medication that goes into her body to severely suppress her immune system, I have settled into a place where I've learned to take each day for what it is and focus on what is true and good.*  What's true for today and this moment?  Anna has a great quality of life.   For that I am very thankful.  I'm thankful for doctors who are moderately aggressive and do all that they can to ensure that active arthritis and uveitis is not a constant thought at our house (for today).

I know that many children and teenagers with various types of arthritis and rheumatic diseases still deal constantly with pain and inflammation (even children and teenagers who see the same doctor as Anna---with a moderately aggressive approach to battling these diseases).  I have no answers as to why some families get little relief even with powerful medications while patients like Anna respond well and can live a normal teenage life.  I share this blog as a possible ray of hope for any parent who is where I was mentally and emotionally over 12 years ago when we first received the diagnosis.  I wanted to know what Anna's future would look like and scoured the Internet for stories of other Juvenile Arthritis children and teenagers.

I memorized the following verses when I was a child, and lately I've been remembering them and thinking about them a lot --- remembering where my focus should be and remembering that there is a peace available which is not always understandable.  I share these verses here, just in case they speak to any of you:

Philippians 4:6-8 (New Living Translation)

⁶ Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. ⁷ Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.

⁸ And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 

 

Update since May . . . . .

We've had a busy spring!  Since I last posted, Anna had bilateral injections to the TMJs (she's always been mostly asymptomatic with the TMJs, so I'm thinking that they are helping but don't know for certain).  We also had an eye appointment.  There is a trace of inflammation in the left eye again---but nothing overly concerning.  Back on Pred Forte eye drops (once daily to the left eye).  Pressures are fine.  We can handle all of that.

Life goes on, and Juvenile Arthritis and uveitis is taking a back seat to everything else in our life at the moment.  (Thank the Lord---it doesn't consume our lives---but I'm very thankful that her disease is mild and stubborn instead of raging, as some children and teens experience.)  Anna has a summer job!  (She wanted to do this!  We didn't tell her she needed to!).  It's a good job with good hours for a 14-year-old, and she's having fun, making new friends, and learning things.

We also took a trip to Nashville, where Anna's sister Abby was married just last weekend.  Two more weddings to attend this summer, but I'm thinking that the next month overall may be a little less busy than May and June (hopefully).  Anna will see the pediatric rheumatologist in July, start pre-season cross country training in August, and enter high school as a freshman this fall!

TMJ Injections on Tuesday . . .

Very busy week!

• Anna auditions for the high school symphonic band on Monday
• TMJ injections bright and early on Tuesday morning (at least I won't have to be challenged with traveling straight into the bright sun that morning!  I don't think the sun will even be up when we have to head to Hershey!)
• Middle School Spring Concert on Thursday, and
• plans (good ones---anticipating great times of fellowship with friends and family) for both Friday evening and Saturday (all day).

No appointments for Anna until June (eye appointment) and July (rheumatologist appointment), but I think most of our weekends are booked solid for the first part of the summer.  (And the last month of eighth grade and middle school will be busy with all types of school activities.)  Anna will be starting to work (part-time---in the dining hall of a local college) after school is out.  Busy week and busy life, but I'm so glad the TMJ injections and issues are taking up just a very small percentage of our life---I'd rather focus on the other stuff of life.  I don't want Juvenile Arthritis and Uveitis to consume or define our lives---just to be exactly what it is . . . just a small part of the journey of our lives.

In the meantime, I'm very, very thankful for the knowledge and wisdom God gives to the doctors who treat Anna.  I continue to pray for them, and especially for the radiologist (for steady hands) who will be aiming those injections into Anna's tiny little TMJs on Tuesday morning.

Good News -- Yet Bittersweet

We received news today that we've been waiting a very long time to hear.  Anna's eyes are CLEAR of inflammation once again!!!  Clear since October!  I think this is a record for her!  Six months with no inflammation (uveitis) in the eyes.  The ophthalmologist seemed so pleased to be able to tell us we could stop the Pred Forte eye drops (that DID please me!), and to tell us that the pediatric rheumatologist could begin to lower the dose of Humira.  Ah!  But there's the clincher---the part that is bittersweet.  The part that keeps me from doing a little dance of joy.  We'll have to wait until we see the pediatric rheumatologist again (not scheduled until July, but until then, Anna has a CT scan scheduled and will have injections to the TMJ scheduled).  I have no idea what we'll do from here, but I am fairly certain that if active arthritis "broke through" on this current dose of Humira, I don't think we'll be tapering the dose.  Until then, we'll just "keep on keeping on," doing all of the things that eighth grade students do in their last few months (ever) of middle school---some field trips, track practice, bassoon lessons, etc.  We'll keep you posted . . . . 

Oh, Those TMJs!

So we started out on a good note in 2012 . . . that is, until we had the MRI done for the TMJs.  Eyes have been great for months, most noticeable joints have been good for a VERY long time.  But the MRI showed that Anna has had active arthritis in the left TMJ.  The report also mentioned something about a "bony fragment" in the left TMJ with the recommendation that it be examined more closely.  So next step . . . CT scan (scheduled for Good Friday afternoon), and cortisone injections, as well (to be scheduled at a different time).  It's just a little frustrating to me that the TMJs are so silent (at least for Anna), even with active arthritis.  Who knows how long the arthritis has been active?  The only way to tell with Anna is to have MRIs done, and it's not like we can have then done on a frequent basis (insurance companies would protest).

I do my best to find the good side of things (otherwise, it would be way too easy to sit in a ditch and whine and get super depressed about life in general).  Is there any good side to this?  YES!  Anna has had no major mechanical problems with her jaw (that we have noticed)---bony fragment or not. That's good!  She still has had no noticeable side effects to any of her medications (and Humira is a pretty potent drug).

As those closest to me know, life for me is a faith journey.  It's so easy for us to smile and exclaim that "God is good!" when things go our way and when we get great news, etc.  When troubles come our way, do I still believe God is good?  That He is sovereign?  That He hasn't yet made any mistakes along the way?  YES! 

I'm currently doing a GREAT Bible Study (Beth Moore---"Mercy Triumphs"---studying the book of James, and working to memorize the entire book---that will take awhile!  It's been over a month, and I'm still in the beginning section of chapter 1, but I pretty much have it down pat!).  I know that the testing of my faith will cause my endurance to grow (New Living Translation).  I have experienced a LOT of various  "troubles" which have come my way the past few years.  But I've also experienced God's presence alongside, through all of it (now THAT is a reason for joy!).  Just as if He has me (and Anna, in this situation) by the hand, leading us and guiding us (and sometime you can ask me some specifics about the timing and obtaining a copy of the report just because Anna wanted to show it to her teacher in Health class---so much might be considered by some to be coincidental, but I know it was God's timing, and His guidance to not let this go for too long).  I know, above all else, that He allows (not causes) situations in life for a purpose, and my prayer through all of life lately is that others will be able to see WHO God is through us, as we travel this journey.

Next step (besides the upcoming CT scan):  eye appointment on Thursday, the 29th.  At one time several weeks ago, I was hopeful that we might begin to reduce the Humira dose, but that is not to be.  We'll see what happens.  Should be an interesting spring and summer on many fronts in our lives. 

Starting On a Good Note in 2012!

In the 12+ years since Anna's diagnosis of JA and uveitis, I've connected with a whole lot of parents in similar circumstances via the Internet. Some have been on this journey for years (as in our case, more than a decade!), while for others, they are just starting out. In any case, I hear and see from other parents the good, the bad, and the ugly. I think all of us experience all three at some point. For those who are dealing "the bad and the ugly" at this point in time, my hope and prayer is that you can take the true tales of the "good" from some of us and allow it to give you hope---hope for the future of your child. I also pray that it will give you a sense of support. You are not alone. Many of us have been where you are, and this is "survivable." You CAN and WILL get through this.

It is always a joy to share good news, and we have great news for the beginning of 2012! Anna saw the ophthalmologist in the first week of January, and her eyes are clear of inflammation---clear since November! Such a long stretch of time for us. I can't even remember the last time that she went months without any inflammation (usually only a trace in that left eye). We don't have to go back for TEN WEEKS! (Hershey is a nice town, and the drive isn't all that bad, but taking that trip every few weeks for doctors appointments really takes chunks out of our days, and Anna really HATES to miss school---I know that's a little odd for a teenager) Then last week, we saw the pediatric rheumatologist for a rather short visit. No changes to medications yet . . . if the eyes stay clear, we may try tweaking the Humira dose from every ten days to every two weeks. An MRI will be scheduled soon just to check on the status of the TMJs. And we may have two options to deal with any the TMJs should any active arthritis show up in the MRI (the option of choice would depend upon the extent of activity and/or damage).

 And so life goes on, and the journey continues.  We can look back and see that there have been some mountains we've crossed, but right now we're in the plains with the sun shining and a nice breeze blowing.  The realist in me knows that there is currently a Methotrexate shortage (I don't know how and if that will affect Anna, but I'm choosing not to worry about it today).  I also know that Humira is a potent, expensive drug.  But so far, we have seen no side effects emerging, and we have an assistance plan from Humira which takes our co-pays down to $5 per month (for a shot which costs about $800 per syringe---otherwise our deductible would be $88/month).   One of Anna's favorite Bible verses is "Don't worry about anything;  instead, pray about everything.  Tell God what you need, and thank Him for all He has done."  (Philippians 4:6)  We have so very much to be thankful for, and that will be our focus.