Starting On a Good Note in 2012!

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

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

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

Long Overdue Update

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!