Monday, February 13, 2012

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.

1 comment:

Dana Morningstar said...

Hi, I volunteer with IAAM (International Autoimmune Arthritis Movement~formerly the Buckle-Me-Up Movement!). What we've be working on in February and March has been reaching out to people on our JA blogger list and asking if we can post them as a resource on the JA page. To start, could we have contact info from you to add to our blogger list for our records. And if you give us the info, then we will also post your blog as a resource for others on the JA page. Please email me at danalm_iaam@yahoo.com and let me know.
We also invite you to participate in World Autoimmune Arthritis Day on May 20th 2012!

World Autoimmune Arthritis Day
events.r20.constantcontact.com

Join us for a 47 hour, Global Online Virtual Convention aimed to bring global awareness while learning more about your disease and ways to manage it best!

Thanks, Dana M