Prayers Make a Difference!

I am the kind of person who thinks WAY too much!  Sometimes (many times) over-thinking can lead to worry---anticipating what MIGHT happen in the future.  I'm learning (God continues to tell me) NOT to do this!  To TRUST Him implicitly in every moment.

We've had a long stretch between appointments for Anna, but we're catching up now!  After rescheduling her ophthalmologist appointment two or three times, we finally were able to work out an appointment for this past Thursday (Valentine's Day).  We've been so busy that I haven't really thought about, nor have I been concerned about her eye inflammation, especially after good news for the past few appointments.   We recently decreased Anna's dose of Humira (from every 10 days to every 14 days).  In fact, it takes while to get the dosage changed with specialty pharmacies (that's been my experience), and I had just spoken with a few people to take steps to update the pharmacy with the change.  As the ophthalmologist was examining Anna's eyes, I happened to think, "Oh!  I hope the inflammation isn't back, because I sure would hate to jump through all of those hoops to get the specialty pharmacy to change the prescription again."  No need to worry (or to cause any confusion with the pharmacy).  Anna's eyes are both CLEAR!!!  Oh!  What great news!  (Makes me almost forget the years of endless appointments with the verdict of "trace cells.")  Smiles all around! Especially after Anna asked the doctor if she could give herself the eye drops before checking her pressures---he had never had a patient ask before, and Anna is the first patient he has given that permission to.  (But then again, he's know her for at least 10 years---sees her more often than some of her relatives do!)

And now the next appointment is on Monday, with the TMJ specialist in Philadelphia.  Over the past month or so, I've been thinking and thinking, trying to anticipate the results of this evaluation (not a good thing to do---who knows what the outcome will be?).  I know many, many people have been praying.  I, too, have been praying desperately for wisdom, discernment, understanding, a doctor who will explain everything so that we can understand it, and mainly for God to guide our steps (I know He has in the past---so many times---on this journey, and He has connected us with just the right people at just the right times--so I know I can trust Him to faithful in the future, as well).  Although we have not yet had this appointment, I have felt an internal shift in my overall attitude about Monday.  (That's why I know all of our prayers have been effective to this point and will continue to be.)

I had been feeling for weeks like I needed to gather up my courage and faith to face the specialists and the results of this evaluation.  I have been determined and resolved to do so.   But over the past few days, the words of Romans 15:13 have been running through my head.  My husband was the worship leader at church the other Sunday when we had a guest speaker, so besides the beginning part of worship, he also had the benediction.  And he chose to sing the benediction:  "May the God of hope fill you with all joy and peace as you trust in Him, as you trust in Him . . . so that you may overflow with hope by the power of the Holy Spirit."  Yes!!!  THAT is what I need---to be filled with all joy and peace by our God of hope, as I trust in Him.  Nothing ever touches us/affects us that God does not allow.  He loves us more than we can ever know, and He's right beside us, holding our hands as we walk this journey.  I know we can trust Him!  So we continue to walk this road, appreciating the prayers of so many, and watching for the little and big evidences of God working as we move forward.  We know that God will be faithful to complete the work that He has begun in our lives.  We also know that He is able to do immeasurably more than we ask or think.  And so we will anticipate Monday's adventure with joy and peace---no matter what the outcome.  (And we'll let you know what they say---we want to be able to share TMJ information with others who may need to hear it, as well.)

Let's Think of Something to Do While We're Waiting . . .

I received a message from a friend the other day---one who reads my blog!  (It's always nice to know that there are a few who actually read my contributions to cyber-space!).  She was asking how things were going, how the appointment went with the specialist, and how Anna's eyes are doing.  I realized that I hadn't updated the blog since November.  And here's the reason why---appointments have been postponed (by the ophthalmologist and the specialist).  The eye appointment in January has been changed to next week (early February), and the appointment with the TMJ specialist in Philadelphia has been postponed until February 18th).

In the meantime, we've been keeping busy.  We had great visits with many family members and good friends over Christmas.  We enjoyed having Anna's brother home from college for several weeks (he livens up the house with his personality and energy), and missed her older sister and brother-in-law who couldn't make it home from Nashville for the holidays.  Anna has been keeping busy studying for mid-terms, practicing her bassoon to prepare for County Band (concert this weekend), getting her lab work done (standing order every 6-8 weeks), and reading some good fiction books.  She's also on the Paint Crew for the high school musical, and that will keep her busy during the coming month.

So there's nothing new about her arthritis or uveitis during the months of December or January.  February will be a different story, as we begin to have more appointments with more doctors (so probably more blog posts as I sort through information and my thoughts on how that information relates to Anna).  I also need to arrange for an appointment for Anna with one of the pediatric rheumatology nurses.  Anna wants them to teach her how to self-inject her Humira, which she is now receiving every two weeks instead of every ten days.

Even though these past few months have been busy yet quiet on the medical front, I find myself thinking often about Anna's upcoming appointment in Philadelphia.  The first time seeing a new doctor or specialist always makes me just a little nervous, since I never know what to expect as far as personalities, whether I'll understand everything they're telling me, etc.  (fear of the unknown, I guess)  But I've also been hearing a lot about trusting God and praying a lot in preparation for big things coming up.  So that's where I am right now--reading my "Jesus Calling" (by Sarah Young) devotional each day (the whole month of January has been about trust), and already praying for wisdom and understanding and clarity of mind for our February appointment in Philadelphia.

I have absolutely no idea what the 2013 year will hold for us (no major life events to anticipate---that I know of, anyway---and that's very different from the past several years), but I do know that God loves us beyond our comprehension, and "He's already there"---knowing what our future holds (new Casting Crowns song)  there in the mystery and working out all of the details so that others will be able to see His love when we chose to trust and follow Him and experience His peace.

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.

Easy to be Thankful This Year . . . .

With such good news in early November, I should have updated this blog long ago, but I was sidelined by illness and then recuperation and then the Thanksgiving holiday, with good and precious time spent with extended family.

We work at being thankful in ALL circumstances, knowing that "this is God's will for you who belong to Christ Jesus." (1 Thessalonians 5:18 NLT) Sometimes that's a challenge (when life brings circumstances that are difficult and puzzling and worrisome), but for the past few weeks, it's been very easy to be thankful where Anna's eyes are concerned. NO INFLAMMATION at all in both eyes! We had gone from June through mid-October with this report, and then a few trace cells showed up in October (as per the last blog post). But from now until January (next eye appointment), we can set that concern aside and appreciate the joy and relief this news brings!

We know that at all times, God surrounds us with His unfailing love and carries us through the tough times. But how good and pleasant it is when we can get down from His arms and run alongside Him, laughing and dancing with joy! For every parent who is struggling with their child's arthritis issues, I'm praying that Anna's journey will continue to encourage you (knowing that there ARE moments along the way when you may experience relief--and "run and dance with joy."). For those who continue to struggle to find the right combination of medications to bring relief from the pain or to settle down the inflammation that uveitis brings, I pray that you will know and experience the "anchor for the soul" that our family knows---to keep you grounded through the stormy weather.

Keep on Walking . . . Same Meds for Now

Anna had appointments with both the pediatric ophthalmologist and the pediatric rheumatologist in mid-October. While I wanted to be really optimistic about the possibility of lowering some medication doses (since her eyes had been clear since June), I'm also a realist at heart. I've learned in the past twelve years to go into appointments with NO expectations (good or bad). Life just is, and we deal with each day as it comes. Good thing I didn't have my heart set on lowering the medications, because a trace of inflammation has returned to Anna's left eye. Not bad by any means, but no longer clear, as the past two appointments had revealed. We stay on the same doses of Humira and Methotrexate for the foreseeable future.

So Anna is back on Pred Forte eye drops---twice a day, in hopes to nip this new little flare in the bud. He started out by prescribing it once a day, but changed to twice a day when he had his assistant take the pressure measurement. In the left eye, it was 13. While that's a good number, it's significantly lower than the previous two appointments. One time (long ago), he mentioned that often when there's a flare of inflammation, it can be accompanied by a lower pressure number. I'm guessing that he thinks that number is more indicative of a flare of inflammation rather than a fluky, short-lived little bump in the road.

Anna's joints are fine. We're in the process of thinking about the second phase of orthodontics (braces are SO expensive, so this is long-term thinking at this point). But since we're thinking about that, we're going to schedule an MRI of the jaw in the early part of the new year. The pediatric rheumatologist wants to check for any active arthritis in the TMJ before we begin any orthodontic process.

While this news may not be the best, I find that we have so much to be thankful for (Anna has rarely experienced side effects on these very potent medications; we have wise, caring, and skilled physicians caring for her--and only 20 miles away from our home---we don't have to travel for hours to see specialits; she's adjusted to getting shots every ten days, and no longer cringes at the smell of alcohol even though she still can't stand the smell). I'm a firm believer in focusing on the positive. Every day is a gift (to each of us), no matter whether we have medications to take or some pain to live with. God loves us, but none of us was EVER promised a perfect, carefree, or long life. In fact, just the opposite. ("I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33 NLT) Nevertheless (LOVE that word!), we hold on to our faith, our anchor (Jesus--our hope). God can and does use EVERYTHING (good or bad) to show us (and others through us) His love and His presence in our lives. We continue to experience that. And we keep on walking, knowing that never once in this life have we ever walked alone.

Enjoying the "Gorgeous" Moments of Life . . . .

My brain is constantly going . . . sometimes that can be a good thing (other times not so much). But this past week, especially, I was thinking how this Juvenile Arthritis Disease can cause so many parents to wonder about the future, and to worry in the present (believe me, I know---I did that probably for the first five years after Anna's diagnosis). Sometimes, even when you're having some good days (weeks/months), it's easy to worry about what lies ahead, or to worry about the medications your child is currently taking and all of the boatload of side effects which are possible.

And then, this week, in "regular life," (as opposed to "JA life"---we all wear so many "hats" in life, don't we, and need to divy out attention to many parts) I was paying attention to the weather forecast. We are having GORGEOUS days here in Pennsylvania. There is a huge high pressure system giving us low humidity, beautiful blue skies, cool mornings, and comfortable mid-day temperatures (my kind of "perfect" weather!). BUT, there's a hurricane stewing in the seas and making it's way towards the east coast, so it may very well affect us in within the next few days (no one knows to what extent). Now we on the east coast have some choices. We can choose to focus on the hurricane---worry, cower in fear, and totally miss out on the present gorgeous weather. I like a balanced approach. Be aware that a hurricane could come, but don't miss out on taking full advantage of these beautiful days.

So what does that have to do with Juvenile Arthritis and Anna in particular? (Bear with me here, as I bring this all together.---I'm feeling "wordy" today.) We had GREAT news today. Clear eyes AGAIN---eight weeks after the last "all clear of inflammation" report. Two whole months with NO inflammation, after years of flares and trace cells. (And this, after over six weeks of fighting the new insurance company, and stretching out Anna's Humira doses to ensure that we would have enough until the new insurance company decided to approve the medication.) Do we even dare to think that maybe, just maybe, we can try (at some point in the near future) to decrease some of Anna's medications? For now, we can cut out the Pred Forte eye drops. In another two months, if Anna's eyes are still clear of inflammation, then we will talk about BABY steps of decreasing medications (the eye doctor has one patient whose eyes were clear for over five months, so they began decreasing medication, only to have everything really flare up again.) So BABY steps.

Here is where I have some choices (like enjoying the gorgeous weather, or worrying about the approaching hurricane). I am choosing to be aware that flares may be in the future for Anna. I have no control over that. But I am choosing to celebrate these "gorgeous" days of eyes with no inflammation---for a longer term than she has experienced in probably over a decade! There's Scripture in the book of Matthew that speaks to such things---not worrying about tomorrow, since today has enough worries of its own. No matter our circumstances, we can choose joy or worry (sometimes it's a struggle, and for our family, it's a bit easier to choose joy today---easier than for some JA parents, I know, whose kids are in pain or experiencing some tough times.)

Insurance Issues

I debated about sharing this issue, but I thought that maybe some other JA parents might face similar situations and may need to know that someone else is in the middle of this little battle. This journey is a whole lot easier to navigate when you know that others are walking ahead and beside and behind---those ahead can lend moral support and offer some wisdom; those beside sometimes help to prop you up when you're feeling weak (and vice versa); and those behind are often watching your steps---you can point out a few places that might be tricky or give some advice on the best path in a rocky terrain. For me, as a believer, I also know that as we walk this journey on earth, we are never alone, and Jesus is always drawing us to a better understanding of God and His tremendous love for us---no matter the circumstances He allows us to encounter. I can place my trust in Him, knowing that He loves my children even more than I do! His plan is for their good, and He makes beauty from ashes.

We encountered a little glitch in this JA Journey which I just found out about today. Anna has been on Humira (along with Methotrexate) for about two years now, I believe. Her joints seem quiet for now, and her eyes, as my last post indicated, are clear for the first time in a very, very long time. However, my husband's employer changed insurance contracts. Changing from one very reputable company to another very reputable company, with the promise that the coverage is nearly identical. The changeover date was July 1st. Since we had ample notice, and since Anna had an appointment with the rheumatologist in early June, I mentioned this change to him. He promptly gave me the name and contact information of the administrative person in his department who takes care of all of these specialty medications (like Humira), with advice to call her as soon as I received the new insurance cards and information.

So we did all of that in early July---got the name of the specialty mail order pharmacy which this new insurance company uses, gave the information to C.L. (the administrative person), and had a few conversations with customer service reps for the insurance company as well as C.L. (Oh, and before July 1st, I made sure that I ordered one more delivery from the previous mail order pharmacy, so that we would have a good supply as we make these changes.) So C.L. called me this afternoon. The new insurance company has denied the Humira. They say that it's not a medication to treat Juvenile Arthritis, and besides that, their limit on Humira is two syringes per month (we've been getting four--Anna gets a shot every 10 days).

So I said to C.L., "What's the next step?" She said the next step is to appeal--their department (and Anna's doctor) will go to battle with the insurance company. Can I tell you that I'm not all that upset about this yet? (I think my husband was rather perturbed---usually our reactions to such things are the other way around!) Right now I'm feeling rather calm, thinking that this insurance company does NOT know how many children are being treated with Humira, and it's making a huge difference when other medications have stopped working (at least in Anna's case---she doesn't have many options left). Maybe another reason I'm not too upset right now is that I remember when Anna's pediatric rheumatologist first prescribed Humira for her. He was telling me that the insurance companies usually reject it at first, but they go to battle, and he said (with confidence), "We always win."

Great News -- Long Time Coming!

Sometimes life gets in the way of posting even GOOD news! Anna had an appointment with the ophthalmologist towards the end of June, and we had GREAT news! For the first time in I forget how many years, Anna's eyes are clear of inflammation. BOTH of them. We go back in August to see if she maintains this status. (I've been on this journey way too long to even get excited about the possibility of long-term uveitis remission). But we ARE excited about two whole months without visits to doctors in Hershey (not that we don't like them---we just see them a little too often sometimes).

The pressures in both eyes were in the low-to-mid twenties, which is inching toward high, but the ophthalmologist wasn't overly concerned. We can decrease the Pred Forte drop to the left eye from daily to every other day. Humira and Methotrexate stays the same for now.

Anna is enjoying a rather laid-back and care-free summer. We've been to New England (LOVED that trip and hope to go again sometime). She's training for middle school cross country running in the fall (which means she's supposed to run at least 100 miles this summer), swimming at the town pool, reading books, and watching movie commentaries (you learn SO much by watching commentaries on movies!--some of them are fascinating, interesting, and even sometimes humorous!) She's also been intentional about expanding her "palate" :o) She's decided to try more and different foods this year, including tomatoes and onions! I didn't even ask her to.

Long Overdue Update

I have been remiss in giving an update to the few faithful readers to my blog. So sorry! As usual, life has been full, and when I've had a few moments, I've either just wanted to not be on the computer, or else other family members have been on the computer. No more excuses! Anna had an appointment with the ophthalmologist right before Mother's Day. His exam showed the same results as the last several visits---clear in the right eye, just one or two cells total in the left eye. So once again, he is pleased, and we have no changes to the eye drop (once daily to the left eye) or the systemic medications. We go back for another appointment in June. Anna also sees the pediatric rheumatologist in early June (really just a week from Friday). I don't really have any expectations for that appointment, since Anna never really complains, even when she has had active arthritis. So we will see. Sometime between now and next Friday, we need to take her for overdue bloodwork. (We get that done in Hershey, and last time we were in Hershey for her eye appointment, she had a bad cold. I don't like getting labs done when she has a cold, because a virus can really skew the numbers and cause unnecessary worry.)

Anna remains active! Since she has completely healed from her appendectomy in February and her micro-fractures to the elbow in April, she has started running again. She plans to join the middle school cross country team in the fall, and she needs to start running regularly NOW to be in shape for that. We spent a day in New York City with the special ensemble (group of 7th and 8th grade singers) in May (lots of walking---no complaints). Anna's summer pass to the community pool has been purchased! And we're slowly but surely redoing her bedroom. It will be a BUSY summer!

Another Adventurous Week!

Wow! From Wednesday to Friday, life has been a little crazy. On Wednesday afternoon, Anna had her post-op appointment to see how she's healing from her appendectomy. She's fine! Feels like a normal kid. So what does a normal kid do once we get home (on a nice spring day, I should add)? She goes outside to rollerblade in the park! Great exercise! She came home a little worse for wear, cleaning up brush burns and asking for band-aids (I added the neosporin). About an hour later, Anna talked about how her left arm felt a little heavy and tired. We (hubby and I) asked many questions, but didn't see any swelling (and her range of motion wasn't all that bad), so we gave her Tylenol and some ice to keep on the injury. A few hours later, Scott thought that there might be a little swelling, and he was concerned about her diminishing range of motion, but if we went to the ER at that time of night, we would have been there all night. We chose to get some rest and call the doctor's office in the morning.

Thursday morning--Even the triage nurse wasn't totally sure that Anna needed to be seen, but we decided on an appointment after school. So our favorite Doctor Joe gave Anna a thorough exam of the elbow and arm, talking about possibilities of fluid in the joint (I'm thinking swelling from the injury---not arthritis), and very possibly a crack/fracture of the radial head. He ordered x-rays done on Friday. So off we go---trip to Lemoyne (horrible traffic through Camp Hill, as always)to the Heritage Diagnostic Center (love that place and the people there!). At 4:30 p.m., I found a voicemail message on my cell phone (I'm not a huge cell phone user, and it was in a pocket of one of my fall jackets) from Dr. Joe's office. Long story short, I had about 20 minutes to retrieve Anna from a neighbor's house and once again head through that horrible traffic (worse, actually---rush hour on a Friday!) to go retrieve Anna's x-rays (by 5:00 p.m., when they closed---got there three minutes after 5, and they waited for us!) and take her to the Orthopedic Institute of Pennsylvania, where they had an injury clinic open until 7:00 p.m.

The radiologist at Heritage Diagnostic Center thought there was a fracture (hence the rush to get into OIP to at least get a sling or splint or something for protection over the weekend). The orthopedic doctor at OIP didn't see any fracture, though. It's probably just severely bruised. They did provide a sling, though, which is good. Anna's arm was heavy and "dragging" with the injury, and they were concerned about her neck and shoulder muscles being pulled because of that.

The one bright spot to a rushed and stressed Friday evening---the Physician's Assistant at OIP looked at the x-rays and said, "Well, I really don't see any fracture, but I'll have the doctor look at it. Anna, you still have some growth plates in there, so it's a little hard to see." Anna didn't know what growth plates were, so when I explained, she's excited that she may not be done growing!!! She would love to be taller!

Hardly ever a dull moment around here, but Anna is ready to have a break from doctors and hospitals for while. She's been in far too many exam rooms in the last two months for her liking. We're having a quiet day today!

Anna says "Thanks"! (First published in the church newsletter)

Anna wrote a thank you note for the church newsletter, following her surgery. Since many "internet" and Facebook friends were also praying, and a few sent cards, Anna said I could share her "thanks" on the blog, as well.

Dear Church Family,
It has been over a month since my appendectomy. On Sunday, February 27th, I woke up with pain in my side. My mom took me to the hospital--I won't give you the details--and they took my appendix out.

You have been very supportive of my recovery. With a month gone by, I'm back to my old self, being outside running or rollerblading and being an organized student in school.

I would like to thank the church family for their love and support. I received many cards, some flowers, and visits from Pastor Nancy and Pastor Charlie.

I also thank you for your support in the MASH (Mechanicsburg Area Senior High) musical which was only three days after my trip to the hospital.

Finally, I would like to thank God for all He has given me in this life. I am so blessed to have a church family who love and support me as I grow in life, physically and spiritually.

God is watching out for all of us, and we are blessed.

Love, Anna Zeigler

Explaining Interoccular Pressure (Update Included)

Brief update: Anna had an appointment with the ophthalmologist yesterday. Routine results: still a trace of cells in the left eye; right eye clear. I'm thinking maybe this is normal for Anna. Still on one Pred Forte drop per day to the left eye and all the same medications. Anna's "pressures" are always checked before we leave the office. The nurse (or assistant---whomever she may be) made faces when she looked at the numbers. The first number (right eye) was 22; the first left eye number was 21. She took them again with results of 21 and 19. Not the best pressure numbers Anna has ever had. However, the nurse/assistant checked with the doctor before she let us leave, and I guess he didn't have a problem with them, because he didn't have her check them again, and we go back in six weeks.

Anna was wondering exactly what are the "pressures" which they measure. I tried to explain it, although it's been quite a few years since I researched and read everything I could. So today I sat down and "googled" to find an explanation for her (and anyone else who might be interested). The website at http://www.visionrx.com/library/enc/enc_iop.asp says:

"Intraocular pressure is a measurement of the fluid pressure inside the eye. This fluid, or aqueous humor, nourishes the cornea, iris, and lens, and it helps the eye maintain its globular shape. The typical eye produces about 4 c.c. of fluid a day, which is circulated and then drains out of the eye.

What causes intraocular pressure?
If the drainage system becomes clogged or if too much fluid is produced, pressure inside the eye can build up. The reasons for buildup are not fully understood.

Increased intraocular pressure can also result from the use of topical steroid eye drops such as those used in the treatment of an inflammation within the eye. Although these medications may be necessary in the treatment of the disease, they can cause a temporary elevation of intraocular pressure.

Normal eye pressure, as measured by an eye doctor, usually ranges between 10 and 21 mm of mercury, with an average of 16. Physical activity, stress, rapid fluid intake, and caffeine can account for a small plus or minus change in an intraocular pressure reading. Pressure that is consistently above 21 indicates ocular hypertension. The condition can develop into glaucoma, a serious disease that causes damage to the optic nerve. Because glaucoma is the leading cause of blindness among adults in the United States, early detection and treatment are key to preventing serious loss of vision or blindness.

How is intraocular pressure measured?
Intraocular pressure is measured with an instrument called a tonometer. There are two types of tonometers, but the most accurate is considered to be the applanation tonometer, an instrument that looks like a pen. After numbing eye drops are administered, the instrument is applied gently to the front surface of the eye and provides a pressure reading. The other type of tonometer is a noncontact tonometer, which directs a warm puff of air toward the eye without touching it."

Since I'm a visual learner, I thought I would also include some images (seen above, obviously): one of uveitis (what the ophthalmologist sees with the slit lamp exam---although this image is a much more severe case of uveitis than Anna has), and one showing the effects of increased interoccular pressure (Anna's are really just on the borderline of being normal, though, so no worries at this time).

Speedy Recovery!

Today is two and a half weeks since Anna's emergency appendectomy, and I just wanted to say that I have never seen someone recover from surgery so quickly! These photos (courtesy of Dennis Baker Photography) were taken just two days following Anna's surgery (dress rehearsal for the musical). So many people were praying for Anna, and I thank all of you! My mind kept going back and forth between being thankful that this surgery was not holding Anna back in any way, to being worried that she was doing way too much too soon.

As far as we can tell, neither the surgery nor the musical (with it's demanding schedule) has had any effect on Anna in regards to the arthritis and uveitis. All remains calm on the those fronts. Several appointments coming up in the future, though, to check everything out. Eye appointment near the end of this month, post-surgery appointment in early April, and pediatric rheumatologist appointment in early June.