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.

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). 

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.

Trying Something Different this Summer . . . . .

MRI results are in, with no major differences from the MRI last fall.  Anna will have another MRI in six months to monitor the TMJs.  So thankful that there's no more damage that the radiologists have seen!  Since Anna rarely complains of pain, but did mention some stiffness in her jaw at the last appointment with the rheumatologist, we are going to go ahead with another procedure over the summer, since further cortisone injections to the TMJs are not advisable:  Dexamethoasone Iontophoresis.  I haven't had time to thoroughly read over the material Anna's doctor sent to me on the procedure, so I won't even attempt to explain any of it here.  We do need to find a local physical therapy place to have this done (if we aren't successful finding a local one, we can always go to Hershey Med, but local would be more convenient).  But I asked, and it's okay to wait until after July 1st to move forward with this.  Our insurance provider is changing as of July 1st, and Anna's schedule is fairly full until July 1st, besides.  I will ask around and check out some local PT facilities in the meantime.  (Changing insurance carriers mid-stream can be a pain sometimes!  Been there, done that!)

I'm not feeling eloquent or full of thoughts that need to be written down tonight, but I did want to post an update!  Anna continues to live a relatively normal and busy life and never complains of pain---just shrugs off a little stiffness after a 70-mile car ride every now and then, but insists that she doesn't feel any pain even when she's a little stiff.  She is doing well at giving herself the Humira injections.  We go back to see her ophthalmologist in 10 days, and we'll pray that her eyes remain clear. 

I continue to constantly pray for wisdom and guidance (for me, for Anna's doctors, etc.), and am so thankful for the little and big ways in which I see some "God moments."  

Another Step in the Journey . . . .

Anna learned to give herself her Humria shot this evening, and she did well!  Scott (my husband -- Anna's dad) was along for the instruction, and it was so good to have three brains soaking up all the detailed information.  We'll see what happens in two weeks when we're at home without a nurse to guide and direct her steps, but I'm confident that she'll do fine.

I remember the days when Anna was really little, and she used to cry on shot nights.  And now years later, she was calm and only a little nervous --- this was her decision and her choice.  No wallowing (maybe a little bit of grieving here and there, but not today!  Today was a step in maturity!)---just acceptance of this journey in life, and thankful for so many little ways that we've seen God along the way (and know that we will continue to see Him, because He never lets go of us!). 

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.

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!

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. 

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.)

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.

Then Again, Maybe Not . . . . .

After a week of "normal" life, the stiffness in the knee returned this morning (no pain, though). I'm wondering if there is any correlation between when she receives the Humira injection. She's due for another Humira injection on Tuesday. Last Friday, when she had stiffness and pain, it was about time for a shot of Humira. I do not have enough experience and/or knowledge to figure that all out. Anna took an Advil this morning. She hasn't been taking them regularly. We'll see what the doctor says on Friday. Just wanted to write it down somewhere to keep track of what's going on.

Rash around the Humira Injection Site

I did want to share a little experience that we had over the weekend. Anna had received her latest Humira injection this past Wednesday. On Friday evening, she mentioned that the area of her leg (where I had given the injection) was itchy. I took a look at it, and there was a rash around the area, and it was slightly warm to the touch. I got out the little booklet about Humira, where it said that this occurrence could indeed happen. It should go away in a few days, but if it did not, we should call the doctor immediately. Well, I did e-mail the doctor's office (just for a "heads up." I figured that it lasted through the weekend, I would call the on-call person.) However, good news! By Saturday morning, the itching had subsided and everything was okay.

I did hear back from the doctor's office. They suggested that we could put some Hydrocortizone cream or Benedryll cream on the area after the injection. Also, the main worry would be if the itching and redness developed into an infection (which it did not).

I wanted to share this for anyone else who may be taking Humira injections---just in case you experience something similar. All's well that ends well!

With Privilege Comes Responsibility

I've had many thoughts this past week, and today when I was mentally trying to summarize them all, I came up with this title (not original, but very true and very quotable).

Anna had an appointment to check her eyes last Thursday. This comes one month after increasing the frequency of the Humira injections from every two weeks to every ten days. The right eye remains the same with a trace of inflammation; the left eye has improved by 50%. Last month, she had 20+ cells of inflammation in the little beam of light which the ophthalmologist uses to determine the amount of inflammation. This past Thursday, she had 10+ cells. So that's good. I must admit, though, that my expectations were too high. Anna had received her last Humira injection less than 24 hours before the appointment. In my mind (which doesn't totally understand exactly how this medication works), I was thinking that the injection of medication should have "zapped" out a whole lot of inflammation! Oh, well . . . as friends have reminded me, this battle with juvenile arthritis and uveitis is a marathon, not a sprint (now I do understand that! My son is a long-distance runner, but not a sprinter).

As I was mulling over these events, the earthquake in Haiti occurred. And then as I was thinking through Anna's disease(s) and medications, I was thinking of just how privileged we are, and I've been wondering how can I even begin to complain about any of that. I wonder just how many little children in Haiti may have arthritis or uveitis issues, and are they even diagnosed, and do they even get any help or have any hope? And even if they did . . . Anna's Humira is delivered right to our doorstep, and the people at the MedMark Pharmacy are always so helpful and bend over backwards to ensure that we receive what we need, when we need it. I also think of friends who have to travel far and wide so that their children can receive care from reputable pediatric rheumatologists and ophthalmologists. Anna's specialists are just 20 miles away, and we are within several hours drive of a myriad of specialists should we ever need them.

Our blessings are great. Anna remains symptom-free, so she has no pain, even with past active arthritis in her TMJs. She really lives a relatively normal 12-year-old life. We have really good insurance, and our state offers supplemental health care for children with chronic illnesses.

Even though our family would not be considered "privileged" or wealthy in our own community, I know there are people around the world who would think we are very privileged indeed. That thought is truly humbling. So what does that mean as far as responsibilities? I can't answer that yet. I'll be praying about that and really listen. For right now, it means sharing Anna's story so that others in similar situations might be encouraged and find hope for the future instead of despair.

Hoping for Better News in 2010 . . . .

. . . because appointments to the ophthalmologist these past several months (since August, I believe) have not been encouraging. (The one bright spot about the frequency of those visits, though, is that the ophthalmologist hired a new receptionist and she is so sweet and personable, and treats us like family instead of some of the former receptionists who acted as if we were strangers every time we went--even when we were going every two weeks!)

ANYway . . . back to the report. Anna's eyes still are no better. In fact, the left eye is worse than it was a month ago. Last month, it had 1+ inflammation (on a scale of 0-4), and this month, the level of inflammation is at 2+. The right eye continues to have a trace--after being totally clear for many months before stopping two immune suppressant medications and starting on the biologic, Humira. [Sigh]

So what do we do now? We're increasing the frequency of the Humira injections. I'll give it every ten days instead of every two weeks. (I had just put the next sticker on the calendar, so I'll have to change that.) We get her eyes checked in three weeks.

As for the TMJs---we don't know how successful the cortisone injections were, and we won't truly know without an MRI. The plan is to have an MRI done in about six months, and if there is still evidence (or evidence once again) of active disease, we would have the injections done again.

Merry Christmas to all! I can say that in all sincerity, despite all the issues of life we face. A favorite songwriter, Steven Curtis Chapman, has a Christmas song that talks about "Our God is With Us--Immanuel . . . and we will never face life alone, now that God has made Himself known as Father and friend, with us to the end, Immanuel" (Makes me want to listen to that again, soon!) I truly believe that, and I believe that ALL things work together for good to those who love Him . . ."