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.

Unexpected Adventure

Friends and family on Facebook already know about our adventure this weekend. I thought, though, that it would be important to include this adventure in Anna's JRA blog, especially as it relates to her disease and medications. Anna had an emergency appendectomy on Sunday afternoon. Everything was very routine. I had my appendix out when I was about the same age as Anna, so I was familiar with the classic symptoms. I called our family doctor before taking her to the ER. He said she should be evaluated at the ER and not wait until Monday. We have four different hospitals within a 20-mile radius of our house. I've learned from past experiences with Anna and her brother Joel that it's just best to go the Hershey Medical Center ER (long story on all the reasons). This is especially true for Anna, since her pediatric rheumatologist (the one who prescribes her systemic medications) practices at Hershey Med. The Medical Center uses a computerized (paperless) system, so all of her current medications are listed in her extensive computerized file and anyone who is treating her has access to all of her information.

As the day progressed, I was reminded of the many reasons why our choice of hospitals was the very best for Anna. The pediatric surgeon (as well as the ER doctor and resident) was very aware of Anna’s medical issues and her medications which suppress her immune system. The surgeon was also aware that because of Anna’s issues, the MRI may or may not have given her a clear picture of how much the appendix was inflamed and/or how close it was to perforating or rupturing. She wanted to get Anna into surgery as soon as humanly possible, because she didn’t want to risk the organ rupturing with Anna’s immune system being suppressed. In addition, the surgeon wanted to take extra precautions and prescribed several IV bags (maybe three?) of antibiotics to be dripped into Anna’s system before she issued discharge papers.

We are now home, and Anna is making very steady progress in her recuperation. Because her Humira is taken every ten days and the Methotrexate once per week, we should have no interruption. We’re just working to get caught up on our rest! I forgot how little sleep people get while in the hospital, when good, quality care (as listed on their bulletin board in the room) means hourly checks to the IV and incision sites by the nurses, and frequent visits from surgical residents (all through the night), plus crying babies on the pediatric floor (they didn't realize that people were trying to sleep!)

I don’t know if any of this will be helpful information to other JA parents, but I wanted to share it just in case.

Perspective for the Journey -- Another Update

After eight weeks of no appointments for Anna, she had two appointments this week--one (Wednesday) with the pediatric ophthalmologist and one with the pediatric rheumatologist (Friday). On Wednesday, the ophthalmologist found her right eye to be clear, and the left eye still with a trace of inflammation. However, he was happy with this! We continue with all current medications (which includes one Pred Forte drop to the left eye once a day). Her pressures are still satisfactory, although the first reading in the left eye was 20---but he had the assistant take it again, and it was lower. Anna told me later that she saw me wince when the assistant said "20." Anything 20 and above makes me a little nervous.

So then I took Anna to get labs done (no problem!---and out within five minutes. I remember the days when labs were traumatic for her, though!) Then back to Hershey on Friday for the appointment. Nothing out of the ordinary, there. No problems with joints.

I've noticed as Anna gets older, the she speaks up a whole lot more about what's going on with her body. (That's good! If she's beginning this at 13, by the time she's 18, she'll be well-versed and a "pro" at this!) Something new this time was a checklist of anything she may have experienced since her last appointment. I let her go over the list, and she did check "headaches." But she doesn't often mention that at home, so it could be related to anything, not necessarily the disease or the medications. She also told the doctor that when she opens and closes her jaw, she can hear clicking. He listened with the stethoscope against her TMJ, and then let Anna listen through the stethoscope, as well. :o) He thinks it's most likely the fact that Anna's TMJ's have a little damage, so the joint is not smooth, therefore it makes noise when it moves. Measurements of the jaw and of the legs show very little difference, and that's good, as well (even when Anna has active arthritis, she rarely complains of pain, so we rely on measurements to indicate any activity).

So all is steady on the arthritis "homefront" for Anna. Her doctor always mentions options if we should have to change anything, and Orencia is probably the next medication on the table. He does NOT like Remicade. He discussed a few of the pros and cons of Orencia and his preference for it over Remicade. (This is good for me to have the information ahead of time---I deal with it better if I can know and read up on things and mentally prepare myself for any possible next step.)

So that's the update on Anna. As I was thinking about what to post, I was remembering that some of the people who read this blog are parents who are relatively new to this "JA Journey" as I call it. Some have thanked me for giving them hope for the future. I remember when Anna was first diagnosed over 11 years ago. I sometimes feel like I'm on a long journey which has some rough patches, challenging spots, yet some other stretches that aren't quite as difficult (it's during those stretches where you can enjoy the view around you rather than focus on the rocky path). I was also thinking that being 11 years into this, I pause every now and then to read what "new" JA parents are writing in blogs and on Facebook, and remembering that I was once where they were, with all of the questions and unbridled passion to gather information on this disease, and worrying about anything and everything from joints to future damage to medications and their side effects. At first everything is very scary and worrisome. That's not to say that I don't have moments of fear and worry now, but not nearly so much as before. I've gotten my "sea legs"---the little ripples and waves don't leave me scrambling to find my balance. I still need to thoroughly and constantly think things over, but I've also learned how to balance out my worries and balance out family life.

I also remember that in the beginning, my bottom line was to find out as much as I could to help me make informed decisions and have a thorough understanding of the disease and the doctors' decisions and the medications, yet not allow the disease to consume our lives. I think I probably let it consume my life for the first few years, at least! (Even though I vowed not to.) It has been a learning process. After years of reminding myself, "Our lives are NOT all about Juvenile Arthritis---that's just a very small part of who we are as a family.", I finally believe it, and work to ensure that it's a reality---that Juvenile Arthritis does not define us.

Above all, my faith in a steadfast, loving God has kept me grounded. I still mull over life and death and diseases and other struggles in life, yet always come to the conclusion that every single day of life on this earth is a gift. No one is guaranteed a long earthly life or a happy earthly life or an easy earthly life (Jesus even said/promised, "In this world you will have trouble . . . "). But we ARE promised that God walks with us each day, revealing Himself (His character) to us in big and small ways. Throughout this journey (plus other family journeys throughout the years with young nephews dying and my older daughter's increasing food allergies and my son's speech issues), as I've struggled with questions, I've seen glimpses of God, and I've found my faith growing stronger. Even though the journey may be long and rocky, we are not without hope, and I love the fact that we (who have been at this awhile) can offer empathetic encouragement to those who are just getting started.

Finally another update!

Anna had an appointment with the ophthalmologist two days before Christmas. We had so many activities and family get-togethers, etc. since then that only now am I taking some time to give any loyal readers an update. So sorry!

The news was good! Not outstanding, but good nonetheless. The doctor found that Anna had barely a trace of inflammation in each eye. He was happy about that, so I think we can be happy, as well. I would love to hear "all clear" for many months so that we could begin (just maybe) to think of lowering medication doses instead of always being aware of what new and powerful medications are "in the pipeline" and "on the table" should we need to consider other options (there aren't many left at the moment).

A friend asked (in the comments on a previous post) why a trace of inflammation worries me. I had to think about that. I'm not sure that I'm all that worried about it anymore. Anna has had a trace of inflammation for years now, so I've become accustomed to hearing that verdict, and her life has been relatively fine with a trace of inflammation. If I have an underlying worry, maybe it's the thought that the longer we go without a verdict of "all clear," the longer we wait for just a glimpse of hope that we may someday start to lower the doses of medication. This is just an inner struggle of mine, because down deep inside, I know that I need to take each day as it comes and not worry about "tomorrow" (since today has enough worries of its own), knowing that our lives are in the hands of the Lord Jesus.

The ophthalmologist was pleased enough that we could decrease the eye drops to the left eye from twice a day to once a day. I think another reason he made that decision was that the pressure in Anna's left eye was higher than the right eye---still within normal range, but we don't want it to get any higher, and the Pred Forte drops have a history of increasing the pressure. We go back in early February for another check on the eyes, and to the pediatric rheumatologist in February, as well.

Other than these doctors appointments and the weekly oral Methotrexate (and accompanying Leucovorin), daily eye drops, and a Humira injection every ten days, life for Anna is basically that of a normal, active 13-year-old. She's active in youth group and sings with the chorus and special ensemble at school. She played the bassoon in the holiday concert at school, as well. Anna has a little job (running a vacuum for an older friend every two weeks), and she now has a role in the high school musical (playing an animal in "Children of Eden") in early March.

Just a tiny wobble to the spinning plate of Anna's Uveitis . . . .

Another trip to see the pediatric ophthalmologist this afternoon. Worked out well (except for a REALLY long appointment because Anna needed her eyes dilated). Anna did not have school, so I rescheduled the appointment for today, instead of next week when Anna has an activity at school which she did not want to miss.

Anyway, he found a trace of cells in both eyes. Now I try to go in with no expectations (usually have plenty of other "stuff" of life to be thinking and praying about--Anna's issues--because they're usually rather mild compared to other kids with JA--are just one of those many spinning plates I mentioned in the last post). I was also figuring that five weeks of Pred Forte eye drops should zap out that little bit of inflammation from the last time (it has worked in the past). But no. That was not meant to be for now. I was just a little discouraged, especially when I heard that there were a few cells in the right eye, as well. That must have shown in my face, because the doctor (who usually does not like one bit of inflammation and is always eager to increase the biologics) said, "It's okay! She's doing fine, and we'll just keep doing what we're doing for now, and check back in six weeks." Now I do appreciate that, because I'm not eager to try one of the very few options we have left at this point, especially right before the holidays. The good news is that the pressures in both eyes are just fine--for that we can be thankful.

The not-so-good news is that the next appointment is just two days before Christmas. A few years ago, I made a mental note to never schedule an appointment in Hershey during the week before Christmas. I have to pass three major shopping areas along the way, and traffic is HORRIBLE. I found that out the hard way. But it could not be helped this time. We'll make the best of it.

This plate is spinning along just fine! . . . .

After Anna's appointment with the pediatric rheumatologist yesterday, I was thinking that my life at this point in time seems like I'm one of those people up on a stage, keeping a row of plates spinning, trying to make sure that none fall and splinter into pieces. Since 1999, one of those proverbial plates has been Anna's arthritis and uveitis issues. Well, thank the Lord, "this plate is spinning along just fine." Since the spring, both knees have been injected (with steroids), and one side of the jaw has had an injection (for the second time). Anna had made two separate comments about her hips in the past week, so Dr. G. paid special attention in his examination of the hips, but he thinks that Anna's one comment was related to puberty and more of a tendon and hormone issue than a joint issue. That's a relief! We haven't had to deal with arthritis in the hips up to this point. As always, Dr. G. is thinking ahead and went over some other medication options (there aren't many options left for Anna) just in case the eyes don't settle down with the steroid drops and in the event that the joints flare again. But rheumatologists from all over the world will gather in November and discuss all of the medications "in the pipeline"---the ones that may offer hope which haven't yet been published in the medical journals yet. So more options may be available in the future.

We're staying with the status quo for medication: Humira (injection every ten days), Methotrexate (15 mg. once a week orally), Leucovorin (5 mg. 2x week), Claritin (on Humira shot days to prevent hives/itching at the injection site), Pred Forte eye drops (twice daily), and then the daily Calcium and multi-vitamin supplements.

So this is fine news for now (since I haven't noticed any major side effects with the current meds, I've become quite comfortable with where we are right now), and we don't need to go back until February. So I can now go back to keeping all of my other (many and various) "plates" spinning. (Just in case one or more of those "plates" fall and crash, though, I've had this one song playing in my head for several weeks---"You can come as you are, with all your broken pieces . . . . bring them all to Jesus; you can come as you are."--so working on "not worrying about anything but praying about everything"----there's a whole lot in our lives right now to be praying about!)

I will say, though---I attended a Beth Moore Bible Study right before picking up Anna from school and heading to Hershey. And Hershey was just my 2nd or third stop for the day before attending to my list of about five other things I needed to accomplish before evening. It was a GREAT morning for Bible Study, and I was thinking that one of the best ways to begin a very busy day (including an appointment with a specialist) is with a Beth Moore Bible Study (inspirational, thought provoking, deep, and encouraging) and great discussion with some authentic and wise women! Our next few appointments in Hershey (November for the eyes, February for the joints) are on Fridays---so maybe I can continue this trend (Bible Study, then appointments).

Another Eye Appointment for Anna . . . .

Life has been extremely busy, so we were so glad that it's been two months since we needed an eye appointment for Anna (last year around this time, I think we were going every two or three weeks). We've been going to this pediatric ophthalmologist for years, and since he had a major changeover in staff about two years ago, we've come to know and appreciate the people who work there. They got to know Anna well last year (since she's a "frequent flyer" there), and once when they realized that the ophthalmologist had called the pediatric rheumatologist and was waiting for a return call, they had gathered at the receptionist's window as we were leaving and whispered to us (with worried looks on their faces), "Is Anna okay?!" They didn't realize that this was just one of many of this type of call through the years, and it was really just a matter of coordinating systemic medication. I thought that was so sweet of them to care that much---made them feel like family members.

All that to say, I went in today (new office building---it's GREAT!) to find that I didn't recognize any staff there---but we were there just in early August! Only the doctor seemed to be the same! I did realize that one of the girls had just had a makeover, and I only saw the back of her, so didn't recognize her at first (new, lovely hair cut, and different type of clothes). Getting used to new staff when you've been going to a practice for years and years is not my favorite thing to do. They don't realize that we come so often that we know the "ropes" really well. We'll adjust. (The one new nurse seems very competent, but I really will miss the sweet and smiling receptionist!--I was told that she left for a job in her field of communications.)

So how are Anna's eyes? The right eye is almost "perfect." The left eye has a trace of inflammation. I said "Oh, good!" (That IS good for Anna!!!---that left eye has sometimes been up to a "2" out of "4." So I'm thinking "trace" is good.) Well, Dr. M. made a little face and said, "Well, . . ." And then he decided that Anna should have Pred Forte eye drops twice a day for the next six weeks. But I'm happy about that, too! I would much prefer Pred Forte drops to increasing Humira or Methotrexate! And he usually prefers to increase meds than to prescribe drops for Anna---so this is good!

Personally, I am happy with the outcome of this appointment. (I've gotten used to a 'trace' of inflammation.) We go back in mid-November. Anna sees the pediatric rheumatologist next Friday.

Life is just crazy-busy right now.

TMJ Injection, Eye Exam, Et. Al.

We had a long day in Hershey on Friday. We fortified ourselves with a breakfast from our favorite breakfast restaurant just a few blocks away from us: Diener's in Mechanicsburg. Found out that MASH class of 2011 can eat for half price for the entire school year until graduation! Anna's brother, Joel, may eat at Diener's more often this year! What a nice gift from the owner to the class of 2011!

After breakfast, we drove over to Hershey and dropped Joel off at Hersheypark. Then Anna and I went to find the new office which her pediatric ophthalmologist moved into in June. Beautiful, homey place---rooms which are much less "institutional". After the eye examination, Dr. M. rolled the stool over to the counter near where I was sitting, and looking and speaking rather seriously (so I was thinking, "Oh, dear . . ." and mentally prepared myself for bad news), he said, "Her eyes are . . . . better." Just a trace in each one! Such good news! I don't know whether the increased Methotrexate finally kicked in, or whether it's made a difference that Anna takes her calcium pill at a totally different time of day than the Methotrexate. Don't know why, but I'm so very thankful that we can begin the school year with an improved eye situation. We don't need to return until October!

After a quick trip to the scrapbook store at the outlets (for window shopping) and a visit to the Hershey Library (closed in preparation for their book sale, so we just sat outside on a bench to read our books), and a stop at the lab on the East Campus for blood work, we ended up at the main campus of the medical center and found our way to Radiology. We were recently there for Anna's MRI, so we're learning our way around that main building now (Anna's rheumatologist sees her in a different building on the other side of the campus).

A word of advice to anyone having any type of medical procedure done at a hospital, where you have various layers of people from different offices who are arranging and scheduling procedures: Always double check and verify the procedure you're scheduled for! I told the receptionist we were there for an injection to Anna's TMJ. As she checked her computer, she was confused, because the computer said that Anna was there for injections to her ankle or ankles. We got that straightened out, but I'm so glad that I mentioned what procedure we were there for. We think it probably became a problem when someone was coding in the procedure into the system. The receptionist told me to verify the TMJ procedure when we went back, and she told Anna to also verify the procedure, and told Anna that it's very, very important to speak up with confidence (not with hesitation) if she's ever in for a procedure and there's any confusion.

Anna had the same radiologist as last time (what an extremely nice doctor--we really like him!), but this time, she chose to have this done without any kind of anethesia (brave girl!). She told me that it was really rather cool. They had a screen where she could see her skull and her teeth and her spine, and she could see it move as she moved (she watched until it was time to get into place for them to insert the needle). That was so interesting to her. :o) It didn't take very long at all. I think I had only read a page or two of my book before the radiologist and nurse brought her out.

By the time we traveled over to Chocolate World to meet/pick up Anna's brother, Joel, neither of the kids felt like taking the Chocolate World tour. Hersheypark was PACKED with people that day, and we have many opportunities to visit Chocolate World throughout the year---when the tourists are gone. Good thing we didn't---The photo at the end of the ride would not have been a pleasant one. We were only about five miles out of Hershey when Anna was in misery and tears, with a hurting jaw and a headache (to be expected--she had just had 20 cc of cortisone injected into her tiny TMJ). Once we arrived home, she put some ice on her cheek and fell asleep on the couch. The next morning, though, she was feeling much more normal. It wasn't a "walk in the park" for those first few hours, but all is well in the end (at least for now).

Injections. . . another one down, another to be scheduled

Another appointment with the rheumatologist yesterday, and another cortizone injection. Right knee this time. Anna was hobbling around yesterday (and we tried our best to make sure she had a quiet day--I think she watched two movies in the afternoon, but then she did help a little with cleaning the house for a bit--all without putting any weight on that newly injected knee---she said she could feel it if she tried to, and it "felt like she probably shouldn't." Good for her for "listening" to her body!). Today, she had another easy day, watching the 4-hour "Gettysburg" movie with her brother, her dad, and a family friend (annual tradition around this time of year in this household--but I went shopping!)

The MRI from June 21st shows active disease in the right TMJ, so another injection will be scheduled soon. Anna needed a clearance from the rheumatologist to run cross country this fall, and that was no problem. She's been running a little bit every day, except for yesterday and today, of course. She's pretty much "good to go" for right now, so she can work on her summer mileage again next week.

No change in medication for right now. The injections are probably the best way to deal with the current mild-but-active joint disease. Anna very rarely feels any pain even with active disease, so the mild-but-active disease doesn't bother her physically. (That's certainly something to be thankful for! I know that for many other kids, this is not the case.) We go back to the ophthalmologist in about two weeks, so we'll find out then how the eyes are doing.

On our own, we've "tweaked" a few things in this past week. Anna has been taking all of her oral medications and supplements before bedtime, but we're changing that a little, so that she's not taking calcium at the same time as anything else. A cousin (who works in a pharmacy) was telling me recently that calcium supplements absorb a lot of whatever else is taken with it at the time. So I'm wondering (after thinking about this for several weeks) if the calcium has been decreasing the effectiveness of the Methotrexate, maybe. It's worth a try to make some changes accordingly, even if I don't know for sure if this is truly the case in Anna's situation.

It's so hard to believe that the summer is almost half over! We've been very busy! Anna and I will be going to the beach with our church's youth group later this week. We love the beach, and we're looking forward to this time away!

Another Increase . . . :o/

Anna's eye appointment for this month kept getting switched around, because her ophthalmologist is moving his practice, and the moving week has continued to shift (building inspections, etc.), and we've had to take into account our vacation schedule. (Even though we're taking some day trips and could be home here and there, I have learned to refuse to schedule appointments for any of us during our vacation week---more relaxing that way!). So the most recent move was from an appointment on June 21st, when Anna already has an MRI scheduled in the same town, to today (which was our originally scheduled date six weeks ago!). Not complaining! I know these things are unavoidable when construction is involved, and I was mainly feeling sorry for the lovely and sweet receptionist who has had to call a week's worth of patients (several times) to reschedule their appointments.

In many ways, I wish we could have kept this scheduled for after our vacation week instead of right before. Although the right eye is "almost clear" (A big hooray for that!), the inflammation in the left eye has increased to between a trace of cells and a 1 (on a scale of 1-4). So the ophthalmologist called the rheumatologist to get some input (the rheumatologist prescribes and monitors all of the systemic medications). I was sincerely praying that the rheumatologist would once again just talk the ophthalmologist into prescribing eye drops for the short term to get the inflammation down (I knew that if Scott were with us, that's what he'd be wanting), but the rheumatologist decided instead to increase the Methotrexate (he did refuse to tweak the Humira---I gathered that from hearing one side of the conversation--and I'm very grateful for that! I've heard his views on that before, and I know that Anna is currently at the max for Humira to his way of thinking---he explained enough and so thoroughly that I am in wholehearted agreement on that subject.)

Even though Anna has been on higher doses of Methotrexate in the past, the increase in the oral form makes me a bit nervous. Her digestive system used to not handle five of those little pills very well. We're increasing to six.

This morning I was in a pretty good mood! I worked in the office until right before lunch, had the KLOVE station (klove.com) online feed, and I spent most of the morning singing along with the music as I worked to get everything done and was eagerly anticipating not having to show up at the office for about ten days. (Enough to thrill anyone!) Then I called to check on the church's laptop (at the "hospital" at Staples with the EasyTech guys), and they said that the motherboard has been corrupted and will call me at home with a quote. (Hmmm...not the best of news!, but I could put that on the back burner for a little bit). Anna's eye appointment wasn't all that bad (could have been a whole lot worse), and I'll work through my angst about the increase in Methotrexate, and it will all be alright. We'll put that out of our minds long enough to enjoy the events and family time we have planned for the upcoming week. At least we don't have another eye appointment until six weeks from now (MRI on the 21st; appointment with the rheumatologist on July 9th).

Thanks, as always, for listening, for your support, and for your prayers. I know God sees all that is happening (the current theme for my small group study on Sunday mornings---"God sees"), and I know He walks with us through all of this. Sometimes we feel that, and sometimes we don't and walk by faith instead, during those times. Sometimes He uses some of YOU to help us know (in big and small ways) how much He sees and cares. Thanks!

Latest Update

Anna had a steroid injection into her left knee on Friday. Her rheumatologist told her that after that injection, she could choose whether she wanted the other knee done, as well. (There's some swelling there, too, although not as much as the left knee.) She was calm and somewhat interested (except that she turned her head away when the long needle was going in), but she declined the offer for an injection to the right knee for now. If the arthritis continues to be active in that knee for the next few months (we go back in July), she'll need to have it done, though. (She said the injection procedure wasn't bad--she just didn't want both knees done at one time, especially since she had a choice in the matter.) We're also scheduling another MRI in June, to check on the TMJs.

On another note, Hershey Med has stopped participating with the supplemental health insurance we receive through the state for Anna (available to her since she has a chronic illness). The state offers choices of other providers, but our primary care physician currently does not participate with any of those. (They're working on it and have all of the paperwork in--just waiting for the contract to be approved.) There is a level of frustration, and this is one reason why I really don't like health insurance which is overseen by government. According to the people I spoke with, if we wanted to choose a different provider which Hershey Med participates with, we would need to choose a different PCP for Anna (I'm NOT going to do that---our PCP has been our doctor for 24+ years and has known Anna since she was a baby). At least it's just supplemental insurance, and we really can cover the co-pays at the doctor's office and some of the other charges until Anna reaches the deductible. The main reason we applied for the supplemental insurance through the state was because of the massive co-pays on the medications, and as far as I know, our pharmacies still participate with the current supplemental provider. We'll be fine, and it will all work out, but I happened to wonder how people feel if that's their primary healthcare. Maybe other people don't build up our level of loyalty to our PCP---maybe it's easy for them to switch doctors. I don't know. I'll stop rambling about it, now.

We've had a very long and busy week in many ways. I'm hoping that life will settle down a bit. We have six weeks until Anna's next ophthalmologist appointment. Maybe we can focus on some other things besides uveitis and arthritis for a little bit (we have many other things to focus on---some track meets and Invitationals, concerts, helping Abby move from her freshman dorm to her summer dorm, etc., planning some vacation days, and maybe making more progress in our kitchen and dining room. If I don't update this blog for another six weeks, you'll know that I'm busy with other aspects of life and that we've been able to put arthritis and uveitis on the back burner for just a little bit. :o)

Better Than I Anticipated . . . .

At Anna's eye appointment today, I wasn't really sure what to expect, so I prepared myself for a huge flare of the uveitis, since her joints have been flaring. But it wasn't so bad! Both eyes continue to have a trace of inflammation, albeit more than six weeks ago (but still a trace---not "number worthy").

I had to smile today, because we've had ophthalmologist appointments with such frequency in the last year, and many of the ophthalmologist's staff is new within the past year---they've trained on Anna (she's a good patient to train on---she knows the ropes and is always calm). It's been six weeks since we'd been there (and that was lengthy--we'd been going every 2-4 weeks). We walked in the office, and they said, "Anna's here! It's been awhile, and we were wondering when you'd be in again!"

Took her for a blood test today, as well. I talked about the change in labs a few blog posts ago. We continue to be pleased with the change. Anna is maturing, and now takes labs in stride. No Emla cream, no lounge chair, no little group of phlebotomists who treat Anna like family, no lengthy registration process--just in and out at the labs at Hershey Med. For all of you moms who are struggling with your little ones and labs, it DOES get better.

Anna has a bassoon solo tomorrow night in a recital at the middle school. :o) Then on Friday we'll find out the game plan for her flaring knee joint.

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.

Back to Normal Life . . . . .

Anna's knees look normal now, and she's already back to living a "normal" 12-year-old life. Was last week's sudden swelling and inflammation a freaky thing or will it become a lingering problem? I can't really say at this point. We have an appointment with the rheumatologist on Friday. If the knee looks like it can and should be injected with steroids, he'll do that at next week's appointment.

As the doctor and I were working out a time for this appointment via e-mail, I would update Anna with options. This past Wednesday was the first option, but Anna had "Career Day" at school yesterday and needed to be mobile (bus rides, field trip, etc.). Then next Thursday was an option, but Anna has a recital that night. When I was telling Anna this, she shrugged and shook her head and said, "We're just too busy . . . " It sounded like she meant, "We're just too busy for any type of appointment or joint injection."---as if this were one of the many social events or school activities that we would need to regretfully decline because other events or activities have higher priority.

By next week, we'll also know how Anna's eyes are doing, since she has an appointment with the ophthalmologist on Wednesday.

That's the update for now . . . . more later.

How Can This Be?

I have asked myself the above question several times since October--when Anna started on the Humira (in my mind, a very powerful medication) and we saw very little improvement in her eyes. The inflammation in Anna's eyes settled down to a "trace" with the help of the steroid eye drops about two months ago, and that was a relief. But then, within the past month, Anna has been talking about some joint issues, telling me about some stiffness (more than she's used to). Now her knee has flared, with swelling and pain (enough to bring tears). She hasn't had knee swelling or pain since she was a baby. Again, in my mind, I'm thinking, "How can this be?" Not only is she on Humira, but also on Methotrexate. For now, we're adding ibuprofen twice daily. Her list of medications has grown significantly in the past six months--we've been adding medications, not tapering off or taking anything away. Her eyes have always been the main issue; her joints have been pretty well controlled (well, except for that jaw involvement last year).

Even though I like to post updates (I remember searching for real stories of kids with Juvenile Arthritis when Anna was first diagnosed--I know how much that means to many parents of newly diagnosed kids), I find that I often hesitate now to write about it, because I don't want anyone to think I'm whining or complaining about the issues we face. (Written words without facial expressions and vocal inflections can often be interpreted in a way we never intended.) In the past 10+ years of this JA journey, I've learned so much about myself and how I handle all of this, about life and the various trials we all face, about my faith and understanding of our Creator God who loves each of us (more than we'll ever understand) and doesn't cause anything evil, but who knows all (even before we do), sees all and hears us and guides us through, providing us with His strength, granting doctors and caregivers wisdom and knowledge and understanding (I do pray for that specifically!).

So another unwelcome bump in the road for us. Another reminder to myself that I have never wanted Juvenile Arthritis to define who Anna is or who we are as a family. I don't want it to become the main focus of our lives. We've done a much better job at that lately then I did in the early years, I must admit---it just took awhile to adjust and get my "sea legs," as I like to think of it. The waves (new developments) don't throw me off balance like they used to.

The one thing I've definitely learned through this and other family events over the years: It's really better not to know what the future might hold, but to take each day as it comes. So that's what we'll do again. More pills for Anna, but her knee is not nearly as painful these past two mornings as it was on Friday. Life goes on, and our Anchor (our faith in a loving, compassionate God) holds.

Better News . . . . Sustained Improvement!

I've been meaning to give an update for the past month. Anna had an eye appointment about four weeks ago, and we were so pleased that the changes we had made resulted in improvement! The added Pred Forte drops and Methotrexate (with the accompanying Leucovorin) has indeed been effective in decreasing the eye inflammation down to a trace of cells in each eye. Four weeks ago, at that appointment, the doctor was happy, and I was happy, even though I'm a true realist and know that we're making progress in a battle, but the war may be ongoing for some time. For the past four weeks, we were able to decrease the eye drops from three per day to one a day.

Anna's next eye appointment was this afternoon. Another day to be so very thankful! Both eyes again have just a trace of inflammation. Eye pressure in each eye (17 in each, for those who are familiar with eye pressure numbers) is also very good, especially considering she has been on steroid drops. We can now drop the Pred Forte drops and go back in six weeks for another check.

Since Anna has been back on Methotrexate for a few months, she needs frequent labs once again. Our regular lab (a few blocks away from our home) closed at the end of the 2009 (the building had been sold, and the new owners had other plans for that space). We loved that lab, and the people there had been a gift from God to us when Anna first started Methotrexate and was so very scared of needles. But she is now more a young lady than a child.

Since we had to make a change in labs, we made major changes. We decided to have them done 20 miles away at the Hershey Medical Center (since we're in the area so often for eye exams anyway), and she decided to try them without the Emla cream. Also, at the old lab, the lovely people were so good about allowing Anna to use the blood donor lounge chairs and always gave her a snack, and basically welcomed her like family (when my husband went in to give blood once, they looked at his paperwork and said, "Oh! Are you Anna's dad?!"). All of those special concessions and arrangements were part of our plan to get Anna comfortable with labs since she had to have them every 6-8 weeks and started at an age when she was rather needle-phobic. Now Anna has grown up, and she said it was no problem just to sit in the regular old lab chair--no need for the comfy lounge chair. So today while in Hershey, we found the building we needed, found the lab, and were in and out in five minutes! Since Hershey Med has Anna in the system, there was no lengthy registration process (like at the old hometown lab). While Anna may not get to know these people like family (Hershey Med is a great place with great people on staff, but it's so large with so many patients coming and going that it's not usually a homey/family feel), this is still a good change.

The photos above are from Anna's experience with her school's Quiz Bowl team. She's been working and practicing hard, and was able to participate as one of her team's alternates. Her team did so well at the regional competition, only losing to the first and second place teams. Such an intense but fun day! (When she wasn't participating in a particular quiz session, she sat with her brother, Joel to watch her teammates.)

Thinking Ahead . . . .

Since December, I think we've been to Hershey at least seven times (and only to Chocolate World once!). We go back again next week. I'm glad it's not all that far away. Last week, we saw the ophthalmologist and heard that there is no improvement in the inflammation in Anna's eyes. So we added steroid eye drops for two weeks. We also added 10 mg. of oral Methotrexate (and the Leucovorin that comes along with prescribing Methotrexate).

Yesterday, we had an appointment with the pediatric rheumatologist and discussed a game plan for the future. Reasoning: while the steroid eye drops will probably bring some improvement, the inflammation will most likely return once we stop the eye drops. Since Anna is not a "full-sized person," there's real hesitation and nervousness in prescribing an adult-sized dose of Humira (once a week instead of the current every ten days).

Some key things to seriously consider:

• Is Anna metabolizing Humira quickly? Children often metabolize medications more quickly than adults. To know the answer to this question, we would need to know how to evaluate the levels of Humira in her body. The ped. rheumatologist is going to see if there's a way to measure this with labs. This knowledge would reveal whether it's safe to prescribe a more frequent dose of Humira.
  
• Information regarding Humira in the last six months has been positive, while serious concerns continue with Remicade, so much so that Anna's rheumatologist is hesitant to prescribe Remicade for any of his patients (I hesitate to share this, because I know several friends whose children are currently being treated with Remicade---but this is what I was hearing.) For Anna, the choice of Humira has been okay so far. (Even though she did get quite a localized rash again after her last shot.)
• There are two relatively new medications/therapies which may be considered for Anna should we need something other than Humira. The one is Orencia (infusion). I can't recall the name of the other at this time (I'm getting older, and my mind can only retain so many details in one day!---next time maybe I'll remember to write it down). I do know that it does not suppress the immune system. But the explanation of how it works made it sound like it would be very expensive.
  
• Steroid eye drops should not be ruled out. While some would rather not use these in cases like Anna's, because of the increased risk of cataracts and glaucoma (especially at such a young age), these risk factors can be addressed with surgeries if necessary. Many of the new medications have much more serious risk factors (including malignancies---ones not normally seen in children). Anna's eye inflammation is not really bad---it's mainly just stubborn. Is it wise to go for the "really big guns" with such expensive and risky medications (when we don't have a whole lot of information on their track record) when steroid eye drops could keep the inflammation down? This is a very serious question. At least one reknowned eye specialist would rather prescribe the steroid eye drops and "deal with the morbitity that we know rather than deal with the morbitity that we don't know."

So that's about it for an update. Just a lot of information to sort through in my brain and think about. My own personal feelings are to go with the steroid eye drops if they will work. Anna is twelve---less than six years until she's eighteen. Sometimes in the back of my mind I wonder if later in life, we'll find that taking Humira affected her body in some way. There's a lot of history and data for Methotrexate, so I don't worry so much about that.

But in the end, as I think through all of these things, knowing that we've been praying for wisdom and direction all along the way, taking in as much information as our brains can handle and then going with what we "feel in our bones" to be right and coming to peace with those decisions, I have to rest in the knowledge that we are doing the best we know how. As I say often, my children belong to Jesus before they belong to me. Every day is a gift, and the future is not to be faced with fear. (Typing this helps me to remember this truth.) God is ever present through all of this, and we can trust Him without reservation to keep His promises, including the one that says "All things work together for good to those who love Him and are called according to His purpose." I have seen this promise fulfilled in some of the most devastating tragedies and sorrows in life (even just in this past week).

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 . . ."

In Anna's Words . . . . to family and friends . . .

Yesterday Anna had bilateral injections (cortisone) to both TMJs. I know that so many people were praying for and thinking of Anna yesterday, and I know those thoughts and prayers helped Anna to be so calm all afternoon, even when the Hospital Admissions people weren't exactly sure where to send us, and even though we got lost on the second floor corridor of the medical center and none of the very nice people we encountered really knew where we were supposed to go (even though we had a map with our destination circled). And then the patient transport person initially couldn't find us to take us down to the ground floor . . . (Anna got to see almost all of a Hallmark Christmas movie on television while we were waiting--cute little tv's in the Pre-Op rooms.) All's well that ends well.

Once we finally returned home, Anna wanted to send out an e-mail to the family members and friends I correspond with on a weekly basis. When I read her e-mail, I thought that many of you might like to hear from Anna, as well:

Hello all,
I thank you all for your prayers and thoughts. I'm fine right now. Nothing went wrong. I feel normal and full of energy. Mom made spaghetti for dinner and that really helped!!! I was really hungry during and afterwards. The docs. and nurses were very nice and great. Though my mouth will be sore for a day or two. And I have to be careful about what i eat. Thank you one and all very much again for your love and support.

---Anna Zeigler

New Developments Since My Last Post

The past six weeks, besides being super busy, have also brought many new developments with Anna. She had an MRI on October 30th, to see if she may have arthritis in her jaw joints. The results came back, indicating past disease on the left and definite active disease on the right. We had a choice between waiting for a bit to see if the addition of Humira would take care of the active disease or scheduling an injection in the right jaw joint, where the active arthritis is present. We have doctor's appointments (both ophthalmologist and rheumatologist) scheduled on December 18th, so we decided to wait until then to make a decision about the injection. However, since that time, Anna started telling me about different things going on with her jaw. There is no pain for her, but her jaw has been doing some "weird" things according to Anna. Like, when she chews, it shifts to the side sometimes. So after a few e-mails back and forth between the rheumatologist and his staff, they worked to get a jaw injection scheduled sooner rather than later. I will call the radiologist's office tomorrow morning to confirm an appointment on Friday (December 11th) for an injection.

There's too much going on in life to really sit down and figure out how I feel about all of this. For right now, I feel "in my bones" that this is what needs to be done, and there are many times in life where you do what needs to be done regardless of your feelings about it all. I do, however, feel that in some small way, the jaw involvement is a confirmation of the "Humira step" being the right direction (I really did second guess that decision for at least a week!). The results of the MRI mean that the Methotrexate and Cyclosporine (and then Cellcept) were not enough to control the inflammation in Anna's body.

But now I need feedback from those who have experience with the jaw injections. Anna will be going on an all-day outing the day following the injection. I will not be there. (She's going to be with the church youth group and my friend--and youth leader--, Nancy.) For those of you who have "been there, done that" with your kids. What should I expect? Soft foods for 24-48 hours? I have absolutely NO experience with cortisone injections. I'm not afraid of them for Anna---just wondering what our expectations should be. I can ask tomorrow when I call to confirm the appointment, but I think the advice and feedback from veteran moms adds a valuable perspective. Thanks in advance for your insight!

(The pictures at the left are from Anna's "Turkey Trot" at the school in November. Her brother, Joel (an experienced long distance runner), came along to cheer on (yell at!--in a good way) all of the runners, and a friend took two pictures of Anna and Joel together.

Reluctant Change . . . .

We've made the switch to Humira. No more daily pills for now. No more weekly Methotrexate shots (and the vomiting that always accompanied those shots). Those "pluses" are what Anna is focused on, so she's happy. After two months on Cellcept, the inflammation in Anna's left eye had not changed. In fact, the ophthalmologist explained that even though the inflammation wasn't terrible that day of our appointment, there were cells sticking/clumping together in the front of the chamber of her eye, which indicated that the inflammation is ongoing and fluctuating. Left with very few options, we've gone to Humira.

Although I read the warnings about Humira occasionally to familiarize myself with the side effects and possible complications, they can be rather scary, so I choose not to dwell on them. Even though I'd been told by many people (and read on the internet by writers whom themselves take Humira) that the shot burns going in, Anna didn't seem to mind so much. Lidocaine had been prescribed, which we used to fill up the extra space in the pre-filled syringe (and then mixed it in with the Humira). I coached Anna on "Lamaze breathing," just in case she found the shot to be painful. But afterward, she told me that the shot just felt like "Dad getting a splinter out."

I know that so many people were praying for us--thank you!!! I felt your prayers! I had to gather up my courage, give myself some pep talks, and sing a few songs to myself to psych me up in order to give her this shot. Scott didn't stick close by (as he always did for the Methotrexate shots, to provide a distraction and to hold the bucket), because the Humira needs to be given in her thigh or stomach (Anna chose the thigh), and she's 12 and very much a young lady, so modesty and privacy were a concern for her.

I always have to think through everything. It's taken me well over a week to come to the conclusion that this is okay, and it's what we need to do. I pray constantly for wisdom and direction, and this must be the direction for now. I would have loved for Anna's eye to clear up, for other, less scary options to be available, but that wasn't the case. We go for an MRI on Friday to see if Anna has jaw involvement, and that's okay, too. This (life, and Juvenile Arthritis, etc.) is a journey, and we were never promised a smooth ride---but God promises strength and grace and peace to deal with the hard parts of the journey when we lay it all at the feet of Jesus. We are so blessed to live in the era in which we live, when so many medical advances are available to us. We as a family are very blessed to live so close (relatively speaking) to excellent medical professionals and facilities. So even though our trips to Hershey are many (in the past three months, anyway), at least we live only 20 miles away and not hours away. There is much to be thankful for. We don't know what the future will bring (how long Anna will be on this, etc.), but we can trust God with our future. I know that without reservation.

Untitled Update on Anna's Eyes . . . .

Well, I have multiple titles I could use for this update. As I was driving home from Anna's appointment in Hershey this afternoon, I was thinking of everything I could use for the title . . .

"Cellcept Isn't Working"
"Appointments Every Two Weeks are Getting Really Old" (and tiring, . . . we're weary of traveling to Hershey so often!)
"May be Switching to Humira" (in the near future, not right away)
"It Was the Best of Times and the Worst of Times" (these words are probably copyrighted, and really way too dramatic for the situation, but it stinks to get bad news on the birthday of your oldest child)

Those titles just about sum everything up. There is no change in Anna's left eye, even after increasing Cellcept for the past two weeks (from 1,000 mg daily to 1,500 mg. daily). (How can that be?! Except that it must not be working for her.) Another phone conference between the pediatric ophthalmologist and the pediatric rheumatologist, and the conclusion is that we continue with the increased Cellcept dose (plus the Methotrexate, Leucovorin, and Pepcid Complete that she's been taking all along) for two more weeks, then we meet with both doctors (separately--the ped. ophthalm. first, then the ped. rheum. an hour and a half later.) (Maybe we'll have time for lunch in between, but Anna is going to miss all but one and a half hours of school that day). Humira is now "on the table" as the next step.

A comedian is going to be at our local college (my alma mater) that evening (October 16) for Homecoming events, and my son wants to go. I told him we probably should (he and I--Anna doesn't want to, and my husband just wants to come home after working there and overseeing the event setups all day). I think I may need a good laugh at the end of that day.

My words from my last update are a reminder to me---it is what it is, and we do what we have to do. I'm to the point (took a few years to get here) that I can just hear the "plan," file it in my mental filing cabinet to mull over every now and then, and put it aside to focus on life in the meantime. No use worrying about tomorrow and what might be, but focus on the gift of today. Still praying fervently for a miracle of some sort, and for the possibility that we don't need to go down another road of yet another medication with its many pros and cons. Ultimately, as I've said before, my children belong to Jesus before they belong to me. I trust God completely, knowing that with every storm of life, He's our anchor.