AnnasJRA

Easy to be Thankful This Year . . . .

2011-11-28T19:25:00.003-05:00

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

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

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

Keep on Walking . . . Same Meds for Now

2011-10-31T19:10:00.004-04:00

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

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

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

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

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

2011-08-23T19:16:00.004-04:00

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

2011-07-21T21:16:00.005-04:00

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!

2011-07-09T20:09:00.005-04:00

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

2011-06-01T22:32:00.003-04:00

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!

2011-04-09T10:40:00.002-04:00

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)

2011-04-05T11:47:00.001-04:00

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)

2011-03-25T15:55:00.004-04:00

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!

2011-03-16T14:49:00.003-04:00

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

2011-02-28T21:59:00.002-05:00

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

2011-02-12T22:39:00.003-05:00

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!

2011-01-13T19:34:00.002-05:00

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 . . . .

2010-11-05T21:43:00.003-04:00

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! . . . .

2010-10-09T20:29:00.003-04:00

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 . . . .

2010-10-01T22:59:00.002-04:00

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.

2010-08-08T21:49:00.005-04:00

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

2010-07-10T23:12:00.002-04:00

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/

2010-06-10T17:00:00.004-04:00

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

2010-05-01T23:09:00.003-04:00

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 . . . .

2010-04-28T20:15:00.005-04:00

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 . . . . .

2010-04-26T15:01:00.006-04:00

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 . . . . .

2010-04-23T20:12:00.002-04:00

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?

2010-04-18T14:52:00.003-04:00

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!

2010-03-15T22:25:00.005-04:00

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 . . . .

2010-02-13T18:54:00.003-05:00

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

2010-01-19T15:03:00.003-05:00

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

2010-01-19T14:40:00.004-05:00

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 . . . .

2009-12-20T17:14:00.003-05:00

. . . 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 . . .

2009-12-12T22:13:00.005-05:00

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

2009-12-06T23:16:00.002-05:00

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 . . . .

2009-10-25T19:41:00.004-04:00

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 . . . .

2009-10-02T22:41:00.002-04:00

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.

Continuing to "Tweak" the medication dose . . . .

2009-09-18T20:32:00.003-04:00

We had our second eye appointment since I last posted. (Every two weeks lately--[sigh]--it is what it is, and we do what we have to do) Anna's right eye continues to look "great." Her left eye is another story. Two weeks ago, the inflammation has lessened just a little. Instead of increasing the Cellcept at that point, we "tweaked" it a little. I had read (at drugs.com, or something like that) about Cellcept needing to be taken on an empty stomach. Up until two weeks ago, we hadn't been doing that. But the ophthalmologist suggested we try taking it "by the book" before we try increasing the dose. So we've been very careful these past two weeks. Anna gets up a little earlier, takes her Cellcept, then waits to eat breakfast. Then she makes sure that she stops eating by 7:00 p.m., so that at 9:00 p.m., she can take her other pill.

But that did not help. No change. So we add another pill (500 mg. of Cellcept). And we go back again in two weeks.

Anna has become an active participant in scheduling the next appointment. She hates to miss any school, so she's often hovering at my shoulder and saying, "Can we get a late appointment---maybe 4:00 p.m.?) But since we've been going every two weeks, they've been squeezing us in to an already tight schedule, and sometimes double booking. On the third date and time we were offered, Anna said, "That's PERFECT! I have study hall that afternoon, so I won't miss much!" (I'm really glad she loves school so much!)

Time for a Change . . . . .

2009-08-13T23:22:00.004-04:00

Anna had another eye appointment today. She's had inflammation in the left eye for about two months now (at least). Four weeks ago, it was determined that we could give the increased dose of Methotrexate a chance to work. Today, there is still moderate inflammation. Another telephone mini conference between the doctors, and now we will switch to Cellcept (replacing her Cyclosporine with Cellcept, but continuing the Methotrexate). There are many reasons for this decision, and for those who want/need more details (if you are traveling a similar journey, etc.), let me know, or ask me some specific questions, and I'll fill you in. To all of my Facebook friends who have been so supportive in your thoughts, prayers, and written encouragements, I thank you from the bottom of my heart (and I apologize that it took me about a month to give you an update). (For blogger people, this blog is sent to Facebook, and most conversations with other JA moms/friends take place there).

Life continues to be crazy and busy. Our oldest daughter moved to her college campus in June (it's local, so we still see her frequently, but she is having a great time--working there for the summer--and eagerly anticipating her freshman year of college, majoring in broadcasting). In the past month, we've attended two weddings and three funerals. Our son had a bad encounter with poison when he was earning money by weeding for a friend. He is now on Prednisone (had to increase that dose). I'm getting to know our area pharmacists very well! (And we've had a few too many trips to doctors' offices this summer for my liking.)

We've been able to get Methotrexate, although not in the tiny little vials. I just picked up Anna's Methotrexate today, and they substituted huge vials (the small vials are on backorder). I think we have enough to last for three months! They gave me a handwritten note which said I should use the vials once and then throw it out, but I spoke with Anna's doctor, and he said that we can use it for more than one dose as long as we refrigerate it (we always do) and check it to make sure it's not cloudy.

I've been burning the candle at both ends lately and really just need a good night's sleep or a good long nap. But I have a long mental "to do" and "must do" list for tomorrow. :o)

Not a good appointment . . . all the way around . . .

2009-07-03T22:12:00.005-04:00

Thursday afternoon was a very long one! Anna had an appointment with the ophthalmologist, and I knew when we made the appointment (four weeks ago)that they were squeezing her into an already full and tight schedule. The appointment was for 4:20 p.m. This week was our church's Vacation Bible School, and Anna was the "craft coordinator (she's only 11, but she's mature for her age, my friend (the VBS coordinator) asked if Anna would do this, and Anna didn't hesitate to say "YES!," and took this responsibility VERY seriously. So Anna needed to be at the church at 6:00 p.m. to be in position as the "craft lady." Although I knew the afternoon would be busy, I thought, "No problem! I'm sure they'll be finished with us by 5:00 p.m., and that gives us plenty of time to get home (20 miles away, on the other side of a capitol city).

Well, we were still in the waiting room after 5:00 p.m., chatting with a friendly mom with an adorable 2-year-old boy. Anna said, "Mom, I'm a little worried." So I called my son (who was hosting an "open house" of sorts in the backyard for his (self-imposed) summer project of building an outdoor roller coaster. I explained the situation and asked him to talk to my husband when he arrived home from work, to ask if he could cover for Anna at Vacation Bible School until we could get her there.

We finally got into the exam room by 5:20, went through the preliminaries with the assistant (and I mentioned to her that Anna was supposed to be back in our hometown by 6:00 p.m., because she had some responsibilities, although I also mentioned that I'm sure the doctor and office staff really wanted to be done and get home to their families, as well). She tested Anna's vision, and then we waited for the doctor. Anna was trying to read a book, but after a few minutes, she said, "Mom, I can't read!" She was upset and worried as the time kept ticking away, knowing that she really wanted to leave and get back home--and knowing that it was going to take at least 1/2 hour, and rush hour/holiday traffic was just starting. She was crying, so I handed her a tissue and wondered if tear-filled, puffy eyes make much difference for an eye exam. I called home again, and by this time my husband was home. He assured us that he would go to the church and get things started, and I told him we would be there as soon as possible (even though Anna would miss a chance at eating supper---I told her I could drop her off, go through a drive-thru fast food place, and bring some supper to the church).

When the doctor came in, he apologized profusely and said that we would make this quick, especially if there was no inflammation. Well, when he turned the lights out and looked into Anna's eyes, he slowed down and was taking a long, careful time examining her eyes. At that point, I figured that it probably wasn't good. Then I knew for sure it wasn't good when he decided to see if he could connect with the pediatric rheumatologist (via phone) at the medical center. At least that call/page went through fairly quickly. Since we have an appointment with the pediatric rheumatologist on Tuesday, we'll discuss options, for what the ophthalmologist describes as "unacceptable" inflammation in the left eye, after increasing the Cyclosporine four weeks ago. The ophthalmologist asked if we had ever tried or discussed options like Remicade or Humira, so I know that those options may be "on the table" eventually.

As the two doctors were talking on the phone, we suddenly heard a noise in the building. I was thinking maybe it was the air conditioner or something, but the eye doctor looked at me, pointed to the ceiling and said, "Rain!" At the time, I was thinking about the appointment, thinking that Anna needed to be back home in about 20 minutes, knowing it would take us longer than that, knowing that traffic would be bad, and now it was pouring down rain (I hate to drive in torrential downpours, and for safety reasons, I always go more slowly in such conditions.) I was thinking, "This is NOT a good afternoon!."

Well, the doctor provided us with garbage bags to protect our heads and our books (it was sunny when we drove over and entered the building, so we didn't even think to bring umbrellas), and he let us out the back door, which was closer to the parking lot. At least we were traveling west . . . the storm was traveling east, and there was a little break in the action by the time we headed out of Hershey. We took the turnpike, avoiding some of the congestion and able to travel at 65 mph. I was able to get Anna to the church by 6:20 (as she exited the van, she kissed my cheek and said, "Thanks, Mom!") She had been on the phone with her dad as we traveled, telling him where to find certain materials and whom to check with for certain information.

I would say that "All's well that ends well," except that it hasn't all ended yet. VBS has ended, and Anna did a fine job with coordinating the crafts, and she held herself together fairly well for a worried 11-year-old in the middle of a crisis of responsibility vs. circumstances beyond our control. I need to take Anna for a blood test on Monday, and then we have a LONG morning on Tuesday (dentist appointment at 7:30 a.m. for Anna, then the appointment at Hershey Med. with a discussion about what to do regarding unacceptable inflammation, then a drive down the road--about an hour--for private bassoon lessons for Anna).

So this long tale is mainly about the stressful afternoon. Many of you who know me well may know that I have a whole lot of thoughts about these circumstances and where we go from here. Anna is on a fairly high dose of Methotrexate already (thanks to Jill, I was able to get some at Rite Aid this week), and I already see subtle side effects of the Cyclosporine since we increased it four weeks ago (not bad, per se, but little things like more distinguishable hair above her lip, etc.). My gut reaction is to wish to be a little childish and stomp my foot and say, "But I don't LIKE any of the options." (I don't like the idea of increasing anything, and I don't like the options of the biologics.) I can't do that either, since I'm an adult, and I know something will need to be done, whether we like it or not.

So in many ways, I think it's probably good that we had something (the VBS issue) to distract us from the eye issues, and I'm glad that I have a few days to adjust to the fact that we need to change something. I took a long walk around our little town while Anna was at VBS on Thursday. That helped. I know that Anna belongs to Jesus before she belongs to us. I know that nothing surprises Him, and that I can trust her to Him. I'm glad that it's okay for us to mentally and emotionally struggle with issues such as these before we get to the point of acceptance. And I'm glad for an Anchor for the soul, that keeps me sane and grounded when life gets a little uncertain.

Long Overdue Update

2009-06-24T23:02:00.004-04:00

Sometimes in life, you can go through a period of about four weeks, where all that has happened in life circumstances makes it seem like a year has passed at least! Our life has been a whirlwind during the month of May and the first two weeks of June. Anna had an eye appointment several weeks ago, but only now is life settling down enough to update my faithful blog followers (I know there are at least a few---thank you! And sorry for not updating lately!).

At Anna's last eye appointment, she had developed mid-to-moderate inflammation in her left eye. So the Cyclosporine dose has been increased by 25 mg. (She was taking 75 mg., but we're back up to 100 mg. daily). At the time, I had so many other things looming (graduation of my oldest, and various related activities and events, plus we were leaving for vacation the morning after graduation, plus I had extra work at my job since I was getting ready for a week's worth of vacation). Because my mind was on so many other things, I didn't have a whole lot of time to really think about this development or worry about it. Anna has been on higher doses of Cyclosporine (not that we liked that . . . some side effects started creeping in), so I was thinking, "It could be worse . . . 100 mg. isn't so bad." We go back next week for another eye exam.

Another issue that has arisen is a nationwide shortage of Methotrexate (injectible). I need to call another pharmacy within the next few days to see if I can find any. I haven't really had time to worry about this, either. (There are advantages to having a hectic life!)

In the meantime, we're adjusting to life . . . adjusting to my oldest moving onto the college campus (her summer job there includes room and board . . . it's easy to be excited about that, since Abby is excited, but it's still an adjustment), adjusting to a summer schedule, adjusting to summer weather, etc. And Anna is eleven going on twelve. Not so much a little girl anymore, but in that in-between stage. Growing up, with all the adjustments that come along with that. We're doing okay, though!

An Update on Anna's Eyes . . . Not Bad . . . . .

2009-03-26T18:12:00.003-04:00

It's been awhile since my last update. Anna saw the ophthalmologist last Friday. This was the first visit since we decreased the Cyclosporine by 25 mg. in January. We were hoping that her eyes might have remained quiet of any inflammation, with the hopes of decreasing the Cyclosporine yet again. That will not happen at this point. The doctor saw maybe one cell in each eye, so he categorizes both eyes as having "zero-to-a-trace" of inflammation. I didn't even broach the subject of decreasing the med at this point. (I'm so happy that the inflammation didn't go wild with the decrease of cylcosporine, but I'd rather be cautious than to try another decrease when there's any evidence at all of uveitis.) All in all, it was not a bad appointment.

Anna had a few viruses over the winter months, but thankfully, they were short-lived, and the symptoms were such that I was able to figure out that they were indeed viruses and not related to arthritis or to medications.

Anna is finishing up her last year in elementary school, and eagerly anticipating the move to middle school! It helps to have two older siblings who have such good things to say about their own experiences in middle school and high school. :o)

Just a little update . . . .

2009-01-29T15:15:00.002-05:00

We've lowered the Cyclosporine dose to 75 mg., but won't know what effect (if any) that will have with Anna's eyes. We have appointments with both specialists in March (different days/weeks). In the meantime, we've been living life and having fun, although everyone in the family has had some sort of virus (each a different type) in the early part of January. Anna's virus affected her stomach (heard later on the local news that people were flocking to the ER with Anna's symptoms, although we didn't . . . just rode them out---she had rather severe stomach cramps---among other things---with her virus). Anyway, the only reason I mention that is because we let her skip the Cyclosporine and even a weekly dose of Methotrexate. I really need to write that down, because the ophthalmologist likes to know every detail (when?, why?, how much?, how long?) if we skipped a dose or two. In the past, a skipped dose or two (while recovering from a virus) has not had any affect. We'll pray it doesn't this time, as well.

Good News for a New Year!

2009-01-05T21:01:00.005-05:00

Anna had another appointment with the pediatric ophthalmologist today. After using the slit lamp machine to carefully look into the depths of Anna's eyes, the doctor said, "Happy New Year! She looks GREAT!" They are both totally clear of inflammation! At first, the doctor was planning to maintain Anna's current level of medications (and have us return in ten weeks), but I asked him how long her eyes would need to look "great" before we could begin lowering some medications. The pediatric rheumatologist (at our visit with him in December) was hoping to start a very careful decrease if Anna's eyes were continuing to look good. The ophthalmologist had a letter from the rheumatologist to that effect (it was, in fact, at the top of Anna's file). So the ophthalmologist agreed that we could try lowering the cyclosporine to 75 miligrams daily (down from 100 mg.). Anna was in back of the ophthalmologist (sitting in the exam chair) grinning broadly at this decision and giving a silent "YES!" There have been times in the past where I have worried over decreases in medication, but I'm not thinking about what might go wrong at this point (a few years ago, a decrease in Methotrexate caused significant flares in the eyes and a slight flare in her joints). I'm just really happy for right now. :o)

As Anna was sitting in that exam chair today, I was thinking how grown up she's been looking lately. Hardly a little girl any more, but a young lady. Time just doesn't stop.

In other news, our freezer died. I think it's been on a slow road to death for awhile (it's been "kind of" working but not working/freezing well. Scott knew for sure that there was a major problem when he went to get ice cream out of the freezer last night, and it was more like a very thick milkshake.

I whispered a little prayer this morning, "Lord, please order my day." And boy! Did my day keep me busy and moving! (I told Anna later that when I whisper a prayer like that, then I figure that any interruptions or surprises during the day are just the way things are meant to be and happen, so I don't get bent out of shape about them.) After tackling a mountain of work (I had been on vacation since December 24th), I arrived home with about 20 minutes to spare before Anna arrived home from school and we headed to Hershey for her appointment. Then when we arrived home again, Abby and Joel informed me that Scott had called them to give them instructions about getting the ice cream out of that freezer (we ate some and gave some away to neighbors), and to let me know that we should probably go shopping for a freezer tonight.

So everyone grabbed something to eat for supper (besides the soft ice cream---mostly omelets and/or scrambled eggs), then I took Anna to youth group and the neighbor kids to our church's Bible School program while Scott and Abby and Joel unloaded all of the food in the freezer into boxes. The boxes of food went to the church, which had an empty freezer which we were told we could use. In my little amount of time at home before playing "taxi," I searched for freezers online at Home Depot, Lowes, and Sears---found what we wanted (the only chest freezer with an energy star rating), and called Lowes to find out why the website said that none of the stores in a 20-mile radius had that model available. Bottom line . . . we printed out the model and price from the website---they had almost the same freezer in the store, and he gave it to us for the on-line price ($30 cheaper than the store model). They had some in the warehouse, and it fit just perfectly in the van. So now we have a new freezer, and we arrived home just in time for me to hop in the car and pick up the neighbor kids and Anna. Now I'm ready to sit and chill a bit. I'm so glad tomorrow's my day off!

(The picture above is from Thanksgiving . . . Joel was trying to get a great picture of the capitol building in Harrisburg from Riverfront Park.) :o)

Supporting the Arthritis Foundation -- The Jingle Bell Run

2009-01-05T20:47:00.004-05:00

Back in December, Anna's dad (my husband, Scott) and her brother Joel participated in the annual Jingle Bell Run in Harrisburg, which supports the Arthritis Foundation. This was Scott's first 5K running event! We were so proud of him! Joel has been participating in this event for quite a few years---back when the crowd of runners wasn't really a crowd, and he could easily figure out if he would place in the finish for his age group. We're very glad for the Arthritis Foundation that this event in our area continues to grow. This year, they raised over $27,000 for that run. Our busy schedules (three kids and many responsibilities keep us hopping) have caused us to prioritize many of our activities, and for the Arthritis Foundation, this is the one event we've focused on lately.

The Fireflies Went Away, but then came back (just a few of them . . . )

2008-12-15T19:09:00.005-05:00

(In the picture above, Anna is playing a "Toss the Christmas Card" game at a recent Christmas party, while her brother, Joel looks on)

It's been a long time since I updated! And well, you know, sometimes I'm never sure how many people read my blogs anyway, but it was so nice of Jacob's mom to ask how things are going. And since she asked . . . . sometime near Anna's birthday (in late September), we suspected that Anna might have pink eye (conjunctivitis). Believe it or not, this was my first experience as a mom with this condition---none of my kids had ever had it before. So I searched on the Internet to find symptoms, and I immediately found out that sometimes uveitis can be misdiagnosed as conjunctivitis. So I called Anna's pediatric ophthalmologist, and he was able to squeeze her into his schedule that morning. Even though I wasn't thrilled about conjunctivitis, I was actually very relieved that it wasn't a flare of the uveitis! (Her eyes were very, very pink, and I figured if it was uveitis, then it was a very big flare . . . because she had never had uveitis symptoms like this!).

So the doctor sent us home with sample drops (they were sufficient to combat the infection---we didn't even need to get the prescription filled).

The good news at that appointment was that Anna's eyes were totally clear of the inflammation. Her regular uveitis check was scheduled for about 10 days after this "Pink Eye Appointment." So we returned to the pediatric ophthalmologist for that appointment, only to find that a trace of white cells had returned to the left eye. Barely a trace, but a trace nonetheless. So we are keeping the same regimen of medication (the Cyclosporine, Methotrexate, Leucavorin, Pepcid Complete) for now. We go back in early January, and we'll see where we are at that point.

Her joints are fine. There was minimal concern about a part of her foot, but the pain she described was descriptive of a tendon issue rather than a joint issue. Anna had an appointment with the family doctor for a checkup last week, and the pain was no longer an issue for her, so it must have just been something minor that healed quickly. Anna continues to grow taller . . . she only needs to grow about an inch and a half to catch up to me! (But that's not saying much, since I'm pretty short!)

We continue to keep busy! Anna is greatly improving on the playing of her bassoon. She has a holiday concert tomorrow night at the elementary school. She sang with her dad at church yesterday (for the offertory) and received a great many compliments. :o)

Since I know some people are reading this blog, I'll do my best to keep it updated more frequently. I'm so glad that other Juvenile Arthritis parents find it helpful.

"They Look Like Fireflies!"

2008-08-22T20:14:00.003-04:00

Today I feel like summer is officially coming to an end, since this was the last weekday of summer, with school beginning on Monday. (We went up to school to visit her classroom today and see all the families from our corner of town --- it was like a neighborhood party! We also took Anna for a hair trim.)

The summer has been extraordinarily busy! (Guess that's par for the course with three active kids.) I haven't added to this blog lately, because we went from June to August with no doctor's appointments for Anna. (That's a good thing!) Last week, she had two appointments: one with the rheumatologist on Tuesday, then with the ophthalmologist on Thursday. I was just a little nervous about the Thursday appointment, because we had missed a few doses of medication, plus we had lowered the dose of Cyclosporine several weeks ago (Anna was developing gingival hyperplasia---overgrowth of the gums, which is a possible side effect of the Cyclosporine). I just wasn't sure whether those variables would cause Anna's eyes to flare.

Nevertheless, she had a decent appointment, with the ophthalmologist seeing only about two cells in her left eye (right eye was clear). This may be a TEENY flare since last time, because I think eight weeks ago, the verdict was "barely a trace." We can go another eight weeks between now and the next appointment. (What a RELIEF!).

I like having Anna's eye appointments on Thursdays, because that's the day a pediatric resident from Hershey Med follows Dr. M. around (parents learn so much more information when specialists are teaching residents! At least that's what I've found to be true.). Anyway, Dr. M. let the resident look at the interior of Anna's left eye with the slit lamp instrument to see the evidence of uveitis. As the resident looked, she said, "Oh! I see! They look like fireflies!" Anna and I thought this exclamation gave us a great mental picture of what is going on in her eyes. We can handle a trace of "fireflies" in her eyes without too much worry. We just don't want those "fireflies" taking over.

I just got a new camera and am still getting used to it and the settings. I will try to post a few photos here and there as I get some good ones.

Another good appointment with the ophthalmologist!

2008-06-12T19:43:00.003-04:00

The good news continues with Anna's eyes. They are all but clear of inflammation (just a cell or two floating around, but "well under control." I try so hard not to live life in the "what if" modes, but there are moments when my mind is working away, wondering IF in two months when we return for another appointment, IF Anna's eyes remain clear . . . will we be able to lower the doses of some medications? My preference would be the Cyclosporine. Guess we'll have to wait and see, and just be content and at peace for these next two months that her eyes aren't flaring, and having to think about what we would do IF the eyes got worse instead of better. (Sometimes I think of that, too, because she's near the limit of her current doses of Methotrexate and Cyclosporine.)

I know that so many people are praying for Anna and her eyes, and we are humbled and appreciative of all the prayers that are lifted up on Anna's behalf. Thank you. Our lives are near to normal (except for lots of medication and weekly shots and occasional blood tests). I know that not every Juvenile Arthritis patient has such an easy road. I hope that Anna's journey (these "up parts" anyway) bring hope and encouragement to all.

A New Chapter in Anna's Life . . .

2008-06-10T10:03:00.002-04:00

Well, maybe a "sub-chapter"! And it's not related to JA or anything. Yesterday, Anna began taking lessons to learn how to play the bassoon! She "fell in love" with the bassoon when she was in second grade, and the music teacher was playing snippets of various instruments for the students to hear. Anna came home that day from school and announced with passion, "I want to play the BASSOON!" We were uncertain that it would happen this year . . . we weren't sure if she would have to begin with an oboe and then graduate to the bassoon, but the music department in our school district decided that Anna's fingers were long enough to navigate the keys, and she could start with the bassoon this year. And now she has an opportunity to have five more private lessons (the school district will pay for them) with a friend of her brother and sister, a young man who seems to be able to play any instrument that is put in his hands! Anna has always admired him (she's seen him at all the concerts we've attended in previous years when Abby and Joel were in middle school), and she is so excited! I'm realistic enough to realize that there will be highs and lows of excitement and enthusiasm levels when learning a new instrument (we've been through this before with other children!) I'll post a picture (of Anna and her bassoon--which is almost as tall as she is!) later on. When Anna was practicing yesterday, Abby had the camera---she was ushering at the high school graduation, and wanted the camera to take photos of her dear friends.

Good Appointments!

2008-04-28T16:02:00.003-04:00

This is a funny picture of Anna! (Her brother Joel took this one.). Two thumbs up for two good appointments (actually, when the picture was taken, she wasn't even thinking about doctors' appointments, but I thought this fit!).

Anna's joints are doing well. We go back in August. Her eyes continue to very gradually improve, as well. Right eye is clear; left eye has just a very occasional cell, hardly even worth a "trace" rating . . . the doctor said between 0 and a trace! Great news! The next appointment is in seven weeks instead of six (YAY!!! For awhile, we were going every 3-4 weeks.). And the ophthalmologist is thinking that if her eyes stay this quiet for two more appointments, maybe---just maybe---we can think about lowering some doses of the medications.

Good news, indeed. Even though uveitis can fluctuate, we will be happy for the next seven weeks, and eagerly anticipate the day when we can begin lowering Anna's medications. Although I try not to think about it much, when I do allow myself, I cringe at the amount of medication that is going into her little body (I don't think she's had a break from medication since she was 23 months old). As always, we do so appreciate the prayers of everyone as we continue on this good part of the journey.

A New Photograph . . . More Updates this coming week . . .

2008-04-18T13:20:00.003-04:00

I know it's been quite a while since I updated this blog. And I know I have some comments to respond to, also. (Sorry for the delay!) Life has been super-busy lately. We've spent a lot of time this month at some track meets and church meetings (after spending last month renovating a room in our small house). Here's a recent picture of Anna with my husband, Scott. They're waiting for Anna's brother's race to begin. Anna has two appointments next week (pediatric rheumatologist and pediatric ophthalmologist), so I will give an update within the next ten days. Promise!

2008-03-13T22:25:00.002-04:00

Relief
A sigh of relief and a prayer of thanks to God! (not necessarily in that order!). I was a little nervous about Anna's eye appointment today, since she had missed a few of her Cyclosporine pills last week (since she had been sick). But the eyes have not changed all that much in the six weeks since the last appointment. And the doctor said that if the next two appointments are okay (he said he's happy with how she's currently doing, even though there is a trace of cells in the left eye), we might even go to eight weeks between appointments. That may not seem like much to cheer about to the average person, but for Anna and her eye doctor, this is good news indeed! I need to be thankful for the small things (like this), although in my heart, I would love to get to a point where we could begin to decrease some of Anna's medications. But with a trace of cells still present, that's probably not in the near future at all.

2008-03-10T18:07:00.001-04:00

Chillin' out at the farm in Maryland. Can you tell that Anna loves the color green? Anything green--any shade of green!

2008-03-06T22:04:00.003-05:00

Here's where we sit back and see what happens . . . Anna's had several viruses lately . . . respiratory, then something that included a headache, queasy stomach, and a low-grade fever. Two days later she had some intestinal troubles. Missed two days of school. So I checked with the powers that be about giving her the Cyclosporine (it's a strong immune-suppressent medication). The advice was to stop the Cyclosporine for a few days, until she regains her health. In many ways, that's a relief, and I just want Anna to feel better (on Wednesday she dissolved into tears and said she was so tired and sick of being tired and sick). On the other hand, she has an eye appointment next Thursday, and I'm just a little wary about what the "vacation from Cyclosporine" will do to the eye inflammation. Nothing to do but wait and see (and place everything in God's hands). . . at least she's more perky today, and much more herself than she has been for awhile.

2008-02-24T20:55:00.002-05:00

Nothing significantly new here, lately! Anna caught one of those cold/bronchial viruses, so she's been coughing a lot lately. I had something similar about two weeks ago--nothing alarming . . . just one of those things where you need Vick's Vapor cream at night and a humidifier going (although I think something is wrong with the humidifier I recently bought---I may have to call the manufacturer). At least that means that we should wait another week or two for the upcoming blood test. Anyway . . . Anna didn't have to wait around anywhere (and find some way to kill time) for the regional Capital Area Science Fair, because we had such a busy weekend (last weekend), that my parents let Anna spend two nights with them in Maryand (that sure helped with logistics of last weekend). She had a blast with Mom and Dad and her best buddy cousin, who also spent the weekend with Grandma and Granddad. Mom and Dad's house is the only place she's ever spent the night (besides JRA Camp or on vacation with us). That seems rather odd in some ways, but that's just the way it's been. At least Anna's to the point where she doesn't need all that much help with organizing her medications. She has it all down-pat, and she's in a routine whereby she knows it's a regular part of her day (after breakfast for the 100 mg of Cyclosporine, and bedtime for everything else).

2008-02-01T10:14:00.000-05:00

"Let's think of something to do while we're waiting" . . . Anna spent last Saturday at the high school science fair, where her brother, Joel, had a project which compares three types of roller coaster launches (he tied for second place---gets to go to the regional science fair on February 16th). Anna chose to go over to the college (which was hosting the science fair) with Abby and Joel. We learned last year that there is a whole lot of time between set-up and judging and awards, so Scott and I decided to stay home and get some things done (we're working on renovating a room in our house . . . a LONG, slow process in a 70+ year-old home) until about an hour before the awards ceremony (it's REALLY great to have a teenager who is a responsible driver!---and I think they enjoyed being out by themselves). Anna took paper and crayons to keep her busy during the "down time."

Anna had an eye appointment yesterday. No cells at all in the right eye (although the pressure in that eye is around 21-22, which is interesting. Normal is anything under 18 or so). Still a trace in the left eye, but better than last time, although my comment of "Good!" with a smile got a cautionary response of "Well, we can't get really excited, because this has a pattern of fluctuating." I know that. I'm a realist, and we've been on this road for quite awhile. But I am choosing to be happy for today!

Another ice storm this morning (mostly rain now). We'd rather have snow. Oh, well! Slow start to the morning, 'cause the kids had a two-hour delay.

2008-01-26T10:18:00.000-05:00

Even though life is pretty much normalized, I've noticed in the past week that when Anna gets up from sitting (watching a movie or something), she spends about five minutes going lunges and deep knee bends. I asked her why she was stretching (I knew she wasn't "going out for a run" like her brother . . . she's not old enough to go for a run without one of us being with her!). She said that she gets a little stiff after sitting. But she was adamant about it being "no big deal, Mom! This is normal for me!" She's just a little stiff; not in pain. No big deal (although it's something I'll personally file away in my mental notes.)

2008-01-24T22:15:00.001-05:00

Injectable Methotrexate hasn't always been readily available, but I'm very glad to have found another supplier, and one that's closer to home! When injectable Methotrexate was first prescribed for Anna, the only pharmacy in the area which could obtain it for me was the very last independent pharmacist (on our side of the river) listed in the phone book . . . I had tried calling all the others, with no success---none of them had any wholesale supplier who could get it for them. I've been driving into the worst part of Camp Hill (traffic-wise) once a month for several years now, and the pharmacy's hours are limited. Well, I tried calling the new Wegman's store, and they can order it in for me---no problem! I am SO very happy about that!

2008-01-14T16:00:00.000-05:00

Life has seemed fairly normal lately, and this is "normal" at our house! We've worked to achieve family camaraderie, and because Anna looks up to her siblings, they can usually get her to eagerly help them when it comes to interesting tasks like the one pictured. Joel built this roller coaster for his Independent Project at school, and then he had to get it to the school. He decided that it was too big to fit into the van, so he thought he and Anna could just walk it up to the high school! They did (and I followed along with the camera and the little bucket to collect pieces as they fell off), although they had to stop several times to stabilize the contraption! Joel and Abby brought it home today (they used the van to bring it home! I took pictures of that, too, but I'll post them some other day on one of my other blogs!)

I know this has nothing to do with JA---but maybe it shows just how normal JA kids can be when the disease is relatively under control!

(I did pick up Anna's blood test results, and they're relatively normal. She has an appointment with the pediatric rheumatologist tomorrow, although I'm anticipating an uneventful appointment).

2008-01-02T20:20:00.001-05:00

Happy New Year! Anna managed to stay up past midnight to go downtown (in our small town) to participate in the festivities with parents and siblings and cousins and aunt and uncle, and Gran, too! We love that we live close enough to walk downtown for New Year's Eve, and we like sharing the time with family, too. Once we arrived home (Anna actually chose to ride home in the car with Scott and Scott's mom, instead of walking back with the rest of us---it was really cold, and it's about 1/2 mile walk home), she was about to "hit the wall," so she gave hugs and went to bed!

Anna had a blood test on Monday morning (checking her cyclosporine levels as well as her CBC and other things), and she will have appointments with both the rheumatologist and ophthalmologist this month.

2007-12-24T08:42:00.001-05:00

We've been getting ready for Christmas, and I haven't taken the time to post. Anna saw the ophthalmologist eleven days ago, and her eyes are the same as last time . . . right eye clear, and the left eye still has trace cells. I've settled into acceptance of this status quo (don't know whether that's good or bad, but I don't really have time to worry, and worrying about it wouldn't change anything anyway).

Anna got her braces off on Friday!!! We haven't taken any pictures yet, but I'm sure we will over the Christmas festivities, and I'll post one here later this week.

Today is our family's "First Day of Christmas". We have so many events to attend, and so many family members to visit and see. But our immediate family's Christmas was this morning, and now I can relax a bit, because we'll just be going to other people's homes, and that's always fun and nice. The loaves of homemade cinnamon bread are made and ready to take a trip to Hagerstown (the house smelled SO good last night!) Two batches of cookies are done, and one needs to be baked before tonight. We just need to pack and take a bunch of used shoes to Super Shoe this morning (they're giving vouchers for used shoes, to be used towards the purchase of new shoes, and Joel really needs a new pair of running shoes!)

Merry Christmas, everyone. May all of you know the love of God expressed in the form of Jesus Christ---God the Son coming down to earth so that we can know God and have a relationship with Him!

2007-12-13T15:00:00.000-05:00

Joel (Anna's older brother) ran in the local Jingle Bell Run on Saturday, to benefit the Arthritis Foundation. We've had a very busy week!

Anna was supposed to go for an eye appointment today, but there is a storm with sleet and freezing rain, and the appointment has been postponed until tomorrow. The doctor's office called me to say they were closing early, before I had a chance to call them and tell them that I didn't want to cross those bridges over the river in such weather as we're having today.

After I post here, I'm going to post some icy pictures on my other blog!

2007-11-23T00:03:00.000-05:00

Happy Thanksgiving!
We spent the day at Gran's house, where the kids decorated cookies, as they do every year!

2007-10-26T18:07:00.000-04:00

Another Appointment Today . . .
. . . and the verdict is . . . still moving in the right direction. The right eye is essentially clear; the left eye has trace cells. Her pressures are back in the normal range (since we stopped giving her the Pred Forte eye drops). A good appointment. Other meds are still the same . . . still 150 mg daily of Cyclosporine and 20 mg Methotrexate weekly.

What RAIN we're having (but we've needed it!). A lot of things are going on in Hershey this weekend. (I said maybe we should have just booked a room and spent the night in Hershey!) We're supposed to go tomorrow for a district cross country meet, but it may be postponed. Traffic was horrible this evening, though! (And the outlets were crowded!). This is the second Friday this month in which I've had one of the girls to an appointment and had to travel home through Harrisburg traffic, which has been absolutely awful. I told Scott that I really don't ever want to attend any Friday evening event in Harrisburg or Hershey (unless one of our kids is involved, or if we absolutely have to!). Getting there would stress me out! . . . . but maybe it would be better if I were the passenger instead of the driver.

2007-09-28T10:14:00.000-04:00

Fluctuating in a GOOD way!
Anna had another appointment, and her uveitis has significantly improved! What good news! It seems like the more we travel this journey, the more information/understanding we learn. Dr. M explained that in order to gauge the amount of inflammation in Anna's eyes, he counts the white cells (which don't belong there!) within a beam of light. Three weeks ago, he counted 10 cells in Anna's left eye (in that measurement of light) and five cells in her right eye. This past Wednesday, he counted two in each eye. He was very happy! That is indeed good news, because the Intraocular pressure in Anna's left eye was up in the 20's, since she's been on the Pred Forte eye drops for that eye. So we're stopping the eye drops for now. (Pressures are very worrisome in the 30's, and she's not there, but 20's is "concern-worthy.") :o)

Anna celebrated her tenth birthday last Saturday! How the time flies!

2007-09-05T18:14:00.000-04:00

Fluctuating Uveitis
Many who deal with arthritis and uveitis describe the journey as a roller coaster ride, and how true that is. We spent the last six weeks being happy about Anna's eyes being totally clear of inflammation, and every now and then, I allowed myself to think that we could soon start lowering some medications. Not so. We had another eye appointment today, and the inflammation is back --- a trace in the right eye and 1+ cells in the left eye (for those unfamiliar with the rating system of eye inflammation, it can be anywhere from a "trace" up to a "four"). That's not really bad by any means, but the ophthalmologist doesn't want it to get out of control.

Part of the issue may be that Anna has grown lately. The ophthalmologist called the pediatric rheumatologist on call, and they decided to increase Anna's cyclosporine by 25 mg. Anna has gained weight since March (and grown taller)---although she's still pretty skinny! Her last labs showed that the cyclosporine "trough" (that's what the ophthalmologist called it) was the lowest part of "normal" range.

Even after taking Anna to specialists for over eight years, I sometimes still have to take a minute for my brain to interpret different terminology. But now I know what a question about "a standing order for trough" means---it really means "do I have a standing order for lab work". (Figured that out on my own, but it took me a minute.) Sometimes it may seem (to these doctors) like I'm spacing out for a minute while my brain is processing a question which I'm not sure I really understand!

It's been a long week already, and it's only Wednesday!!!! Car issues (the emissions light stays on, and we can't get an appointment until next week, but the dealership service guy assures me that it will be okay to drive it for the next week!), and this evening Scott (Anna's dad) found that a huge screw had penetrated the back tire of our van. Lovely (being sarcastic here!). I am SO glad that I chose to take the car to Hershey for Anna's appointment (even with that emissions light glaring at me) instead of the van, which would have ended up with a flat tire during evening rush hour!).

But the week has had some really good points, also! Anna's brother Joel had his best run of the season last evening. Anna loves to go to cross country meets and invitationals, and she's sometimes a very loud (and excitable!) cheerleader for her brother and the other runners!

2007-08-11T11:40:00.000-04:00

Took this picture of Anna this morning, and thought it was a good one. She ran in a Fun Run today (the first time she's done so), and she did well, although she really needs to train and to stretch before she does much more running! This photograph was taken before the 5K (in which her brother participated) and the Fun Run. It was a BEAUTIFUL morning in Pennsylvania!

2007-07-26T17:13:00.000-04:00

A HUGE step in the right direction . . . . GREAT NEWS! Another ophthalmologist appointment today, and it was one of the best appointments in a very long time. No inflammation at ALL!!!! Anna isn't always aware of everything that's being discussed at these appointments (the doctor takes notes while facing away from her but towards me, and even though I can hear him talk to his assistant, Anna can't), and when I told her afterwards that her eyes are totally clear, she was thrilled, and then asked, "So why do I need to keep taking all of this medicine?" :o) We can't go "cold turkey" on the meds . . . . they are what's keeping the inflammation at bay for right now. But at least we can start to make little changes. For the next six weeks, we'll go from two eye drops down to one per day. But we'll keep the Methotrexate and the Cyclosporine (and Leucovorin and Pepcid Complete) at the same levels. Maybe we can lower the Methotrexate or Cyclosporine in six weeks. We'll see. But in the meantime, we'll be happy and grateful for this reprieve! A great way to start the school year coming up. We'll just hope we can keep lowering med doses. As I always tell all of those who I e-mail with this information, thank you ALL so much for your prayers. I know that God could choose to heal people if He wanted, but I also know that He has a greater purpose for the journey He sometimes allows us to travel, even when it seems like a heart-wrenching and painful road. I'm just grateful for now that we're at a plateau were the view is NICE!

2007-06-15T09:12:00.000-04:00

Anna had another eye appointment yesterday. The good news (I guess it's good) is that her eyes are the same as a month ago (that means that her right eye is clear, I believe, and the left eye still has some cells there, but much improved since the spring---February and March). We continue with the same treatment. I guess it's a good appointment since nothing is worse. I was just hoping for more improvement, so that we could start decreasing medications; my expectations were too high, I guess, so I'm just a bit disappointed. And then sometimes I think of the "what ifs"---Anna's eye pressures were hovering in the low 20's (they took three pressure readings from each eye), and I worry that if her pressures rise, then we'll need to take her off the Pred Forte drop to her left eye. And if we do that, will the inflammation get worse? She's already on a generous dose of Cyclosporine, so if we have to stop the Pred Forte drops and the inflammation worsens, will that mean that we need to think about Remicade or Humira again?

Nevertheless, I always tell my kids we can't live in the "what if's" in life. I need to NOT worry about tomorrow, because tomorrow has enough worries of it's own. Just live in today and be at peace that for now. Anna's eyes aren't any worse, and for the next six weeks, we stay with the course that we're on.

2007-06-06T21:25:00.000-04:00

Anna had to get some water in a little bottle for science class, and the teacher requested that the kids try to get water that was not from the tap! So we went to a nearby creek to get some. We stayed and Anna splashed around for about 45 minutes, before we had to pick up Abby from work. She probably would have stayed until sundown if we had the time! Next time we'll make sure she has her swimsuit on!

2007-05-14T17:23:00.000-04:00

Good News today!!! Anna's eyes continue to improve. The right eye is clear; the left eye has trace cells. We can eliminate the dilating drop at night to the left eye and the daily Pred Forte drop to the right eye. We can decrease the Pred Forte drops to the left eye from three per day to two! Any little change as far as decreasing medications or eliminating medications is VERY good!!!! I continue to pray, though, that a decrease in Cyclosporine is in the near future. I'm not a big fan of some of these potent meds.

(Anna's eye pressures are decent, also. Right eye is at 20---that should go down now that we are eliminating the Pred Forte drop. Left eye is at 17, which is a good number within the normal range).

2007-05-13T18:28:00.000-04:00

A BEAUTIFUL Mother's Day on City Island in Harrisburg. Getting out in the sunshine and gentle breeze with water nearby really helps to lift the spirits and is a balm for the soul! We'll see the ophthalmologist tomorrow and find out how Anna's eyes are doing.

2007-05-08T15:53:00.000-04:00

We enjoyed a beautiful and fun-filled day at my cousin's/uncle's farm on Saturday. Anna receives her Methotrexate shot on Saturday afternoons, and she was thrilled that a "professional nurse" (my cousin) was available to give her the shot instead of mom! My cousin has lots more practice. (I was relieved not to have to do it this week, too!)

2007-04-24T23:35:00.000-04:00

Brother Joel getting ready for a relay at a track meet

2007-04-20T16:57:00.000-04:00

Well, a reprieve of sorts. I was rather nervous sitting and waiting for the verdict on Anna's eyes this afternoon, and I didn't take any reading material today. Spent all the "waiting" time praying for peace and acceptance of "wherever we go from here.". (I know so many of you have been praying, and I know God answers prayer, but I also know that He allows us to travel some journeys for many purposes, so He doesn't always---in fact, rarely does He seem to save us from the tough times and sometimes the nightmares of life.)

And the verdict from the ophthalmologist was . . . ."Better." Not a "let's celebrate, WhooHoo! better", but more like a hesitant "better." We keep doing what we're doing (Methotrexate, Cyclosporine, Pred Forte drops, dilating drops, Leucovorin), and we get to stretch out the time between appointments to THREE weeks instead of one or two (now I am definitely celebrating THAT fact!).

2007-04-11T14:44:00.000-04:00

Well, last appointment was Friday (April 6). Anna's eyes are slightly improved, but not nearly where the ophthalmologist wants them to be. He had a lengthy (for him) discussion with me, and he really feels that we're heading towards Humira or Remicade. Neither of those sounds very fun for me to explain to Anna (Humira injections really hurt, and Remicade means being at the hospital for a few hours every 6-8 weeks for an infusion.) I'm also nervous about the cost---what insurance will cover and what we will be expected to pay (for either one of the options). The Cyclosporine itself is very expensive, although once we paid our prescription deductible, it's down to $35.00, so that's not too bad (when you consider that the retail cost of 100 mg for 30 days is over $191!).

I'm at a point (especially last week) when I really didn't want to think about arthritis or anything associated with arthritis. In my several-times-daily talks with God, I keeping telling him, "I DON'T LIKE THIS PART OF THE JOURNEY!" He hasn't promised to take it away, but He keeps telling me that I'm not alone---that's He's still right by my side.

I know down deep inside that once Anna gets used to whatever might be next, she'll be courageous and accepting, even if she doesn't like it. That doesn't stop any of us from just being sad that we even have to think about some unfavorable options (besides the fact that she probably will still need the Methotrexate injections and some of the Cyclosporine also, to start out with, as per the explanation of the ophthalmologist.) Does anyone with a heart ever want to tell their child that they will have to regularly receive a painful shot or spend hours at the hospital every few weeks with an IV dripping in? I'm still going through the grieving process and will eventually get to the point of grudging acceptance and then I'll be able to put on my strong and courageous face for Anna's sake.

2007-04-02T21:41:00.000-04:00

Arthritis and Uveitis don't take up our whole lives! Spent a day at the regional level of National History Day (Anna's brother, Joel, wrote a paper). Had some downtime while there!

2007-03-26T22:10:00.000-04:00

It'll soon be a year since I last posted (life is BUSY!!!!), and Anna's eyes have changed . . . not for the better. A few months ago, Anna's left eye had significant inflammation. We tried increasing the Methotrexate. No change. Added Cylcosporine. In two weeks, the inflammation was even worse. Now we've increased the Cyclosporine and added Pred Forte drops (and a drop at night to dilate her left pupil). As of Friday past, there was some improvement (probably due to the eye drops). The eye drops can only be temporary, because the Pred Forte drops have a history of making Anna's eye pressures rise. This is a very bumpy part of the JA journey. A little scary. Friends and family have been so supportive and encouraging. What would we do without our support system? Thought I'd post a new picture or two. Anna's brother Joel saw the last picture, and he said, "Mom, that's a REALLY old picture. You need to post a new one."

2006-05-23T14:40:00.000-04:00

Anna had an appointment with the pediatric ophthalmologist last week, and her eyes are improving! In fact, the right eye is totally clear. The left eye still has just a trace of inflammation, but less than six weeks ago. The increased methotrexate is doing its job, and Anna hasn't experienced many side effects so far (except from a little nausea and vomitting a few hours after the shot).

It will soon be a year (or maybe it's already been a year) since her eyes first began flaring after trying to taper off the methotrexate. Except for the shots each week and the nightly doses of folic acid and Pepcid Complete (and occasional heartburn), life seems pretty normal, although normal is VERY hectic and chaotic! The school year will soon be over, and with as many activities that the kids are already looking forward to, I think the summer will fly by!

2006-04-13T21:34:00.000-04:00

It's been a while since I've posted any updates! But I'm not sure if anyone is reading, and life has been extremely busy! We had an appointment with the ophthalmologist about six weeks ago, and Anna's eyes were improving, so the doctor did not want to change one thing. So we were optimisitc and glad that we didn't have to add eye drops again or increase the methotrexate. Went back for an eye checkup yesterday, and the inflammation in the left eye is increasing again, so we are increasing Anna's Methotrexate dose starting this week. The inflammation isn't bad, but it needs to be addressed.

2005-12-21T14:59:00.000-05:00

Anna had an appointment with the pediatric ophthalmologist today. Her eyes (the uveitis) have not improved in the past few months, despite the methotrexate and the Pred Forte drops. So beginning this weekend, we'll increase the amount of Methotrexate she receives.

The inflammation in the eyes has no outward symptoms, and Anna has no complaints. At least that's good! She continues to dance---she loves it, and after the Holiday Dance Program (and seeing the older girls dance), she said she wants to continue until she graduates from high school! I think we'll take one year at a time for now! I took a few pictures at the program. Maybe after Christmas I can get one posted here.

2005-11-15T11:51:00.000-05:00

I took Anna for a blood test yesterday, and that reminded me of some conversations around our house. When Anna was very young, she would scream and cry during the blood draws. I think my older kids tagged along for maybe 2-3 of those events (when they were too young to stay at home by themselves). Even though they were out in the waiting area, they could hear her getting hysterical each time. As Anna has gotten older, she has calmed down significantly (we changed labs---found a place close to home that is a small operation, and the lab techs have worked well with Anna and have gotten to know her). Since Anna no longer cries and gets hysterical, she has often encouraged her older siblings to come along to see that she doesn't cry. In her words, she says, "I just scwinch!" (Meaning she shuts her eyes tight and makes a face when they stick the needle in.) Her older brother, Joel, every time she says that, shakes his head, rolls his eyes, and says, "Anna, that's not a word." WELL!!!! Joel was looking up a word in the dictionary the other day, and he found the word "scwinch!" It actually IS a word, and Anna was using it most appropriately! We all laughed! Anna still can't convince Abby and Joel to come along to watch her get her blood drawn, though!

2005-11-10T17:20:00.000-05:00

Anna and I just returned from an eye appointment. It wasn't bad, but not great. Just mildly frustrating. Both eyes continue to have a trace of inflammation, but the left eye is worse of a trace than last time. So for the left eye, we have to increase the Pred Forte drops to twice a day. I feel like this uveitis stuff is such a intricate balancing act--worrying about pressures rising with the increase in drops (although Anna's pressures are at 17 and 18 right now---not bad by any means). Last time she was on drops twice a day, they went up into the mid 20's, and we don't like them to be there. I've never had much patience for intricate balancing acts. Guess this is building my character.

At least the drive to and from Hershey was GORGEOUS through the valley with the autumn colors and the deep colors on the distant mountains and the huge autumn cumulous clouds! Gotta appreciate the small things in life!

Tammy

2005-11-02T22:13:00.000-05:00

Anna's JRA Guestbook

Let's use this thread for the guestbook for Anna's JRA Page! If you visited Anna's JRA Page and want to post a 'hello,' please do so! I look forward to hearing from you!

2005-10-25T14:00:00.000-04:00

I'm creating this blog so that I can more easily update everyone on Anna's JRA Journey! I haven't been very good at updating my webpages since I took a part-time job three years ago, and since my older kids have more school work/projects to do on the computer!

The last I updated was in January 2004. (See the "Anna's JRA Journey" link from http://www.geocities.com/tlzeigler/AnnasJRA.html)

Since then a LOT has happened. Anna's stomach couldn't tolerate the Sulfasalazine. We found that out during an incredibly long and difficult week in the early winter of 2004. Lots of playing phone tag with doctors and stomach convulsions and Anna crying big, silent, crocodile tears after each meal. So we took her off Sulfasalazine.

My memory is a bit fuzzy at this point (that was 18 months ago!), but I think she was just on Vioxx for awhile. She was doing okay, but there were times her knees were getting stiff after sitting, and her eyes flared just a little. So if I remember correctly, we added Methotrexate (the pills). That helped. She was on a rather low dose, and still on Vioxx, and I think she was taking eye drops (Flurometholone) at the time, too. Then Vioxx was pulled off the market. I had just received a three-month supply, so we continued using it (because we've always liked Vioxx, and Anna never experienced adverse side effects).

Even after our very last dose of Vioxx, Anna continued to do well. So well, in fact, that her doctor decided to try lowering the Methotrexate (we never know how she'll do unless we try!). That was in the spring of 2005. Her doctor was hoping that maybe if she continued to do well, we could get her off medications before school began. That was not meant to be. Once we lowered her dose, her eyes flared. So we increased methotrexate (back to what she was taking initially---7.5 mg weekly). During that time, her pediatric ophthalmologist moved to Ohio (we STILL miss him!!!!!), and although it had nothing to do with the switch in pediatric ophthalmologists, Anna's eyes didn't respond at first to the stronger eye drops prescribed for the flare. So we increase the methotrexate again. Anna started vomiting at 2:00 a.m. each week after her bedtime dose of methotrexate.

So in July, we learned to give injections to Anna, and she now receives methotrexate by injection. (12.5 mg. weekly). She does okay with that, except that she's starting to experience anxiety each week during the hour before her shots, when we put Emla cream on to numb the area. I'm thinking through and praying about this, trying to figure out the best way to help her.

When I think back to the time when I first created Anna's JRA page (quite a few years ago), I think that it's been a rather long haul, although we've been very blessed that Anna has such a mild case of both the JRA and uveitis. It's just that when Anna was first diagnosed, I thought maybe within five years or so, she would grow out of it or something, and that we'd be able to go for at least some length of time without any medication. Not so.

Anna is now eight years old, and except for daily medication (folic acid & Pepcid Complete) and weekly medication (methotrexate) and daily eye drops (for the uveitis), she seems like a very normal child. She is a sweetheart---with a very gentle and compassionate disposition.