Saturday, August 03, 2013

Waiting to See Where this Journey Takes Us Next. . . . .

We had an appointment with Anna's pediatric rheumatologist about two weeks ago.  We're still keeping an eye on the TMJs, and the next step is to see a group of doctors at a clinic in Lancaster.  It's actually a "Cleft-Palate Clinic," but Dr. G. has referred several patients with TMJ arthritis issues to this group of doctors.  So it's Anna's turn to be evaluated there.    That appointment is on Tuesday morning.  (So I thought I'd better update my blog now before I have another lengthy update!)  All of the options for addressing Anna's TMJ issues (significant damage to the left side because of past active arthritis) have been swirling around in my mind for quite some time, and it's been like looking at pieces of a puzzle being unsure how they all fit together to form a picture, especially considering other activities and interests in Anna's life.

I was so very grateful to have a few of my swirling questions answered at that appointment.  I wasn't necessarily anxious before the appointment, but I did leave with a real sense of peace.  (So very thankful for that!).  No need for a set schedule for these upcoming possibilities for dealing with the TMJ issues.  If we're looking at surgery, they would probably need to wait a little bit anyway, since they need to be sure she is finished growing.  So her ped. rheum. advised her to enjoy her years of high school, work to audition for District Band (playing bassoon), and don't worry about possible surgery (and subsequent healing) until maybe after graduation.  (Anna will be a sophomore this fall, so we have a little bit of time.)

I had another question about Anna's future (another one that's been swirling around in my head with no real answers).  Our high school requires students to begin thinking about possible future career choices, and three related job shadows are required before graduation.  So Anna has been working to narrow down her passions and areas of interest.  But then I had a question about studying or working abroad---is that possible, and how does it work when she is on a biologic medication (when it's delivered by UPS to our doorstep once each month, and then refrigeration is required)?  Dr. G. had an answer for that, as well!  He's already had at least one patient who has studied abroad, and her medication was delivered to her there.  He did suggest that we stick to Europe or South America, and probably not many parts of Africa or other third-world areas.  If Anna decides to study or work abroad at some point, he will put me in touch with this other patient and parent.

Dr. G. did mention that it's been several years since Anna has had any arthritis flares in her knees.   He said that if it weren't for her eyes (although they've been clear of inflammation for the past year) or her TMJs, no one would ever know she has arthritis.  I know the Anna has a mild case, and because she has such a high pain tolerance, she doesn't present like a vast number of JA children, teens, and young adults.   Did you know that it's very possible to be so very thankful, and yet feel a little guilty at the same time?  I know that's a natural reaction!  I've read similar posts from other JA moms---instead of "survivor's guilt," it's more like "my child's doing so well" guilt, when we know others are suffering.

Anna finished her iontophoresis sessions and her physical therapy sessions.  We were able to do over half of the iotophoresis treatments at home.  The physical therapist was working on some posture issues with Anna---telling us that it would help her TMJs.  She still occasionally does some of the exercises, and she didn't mind the few sessions with Bob the Physical Therapist.  He would wrap her neck with heat for a little bit, stretch her neck and back muscles for a bit to loosen them up, and then do some strengthening exercises.  For the last session, Anna said it was definitely like a workout!

Just a note to anyone who may end up with the prescribed treatment for the TMJs---it's relatively new, and the insurance companies have no clue what it is we're doing, so they aren't into covering the cost of the pads ($10 per pad---2 pads per session---8-10 sessions), and they didn't cover the cost of the medication that I needed to get from the pharmacy for the home treatments (they did cover the cost for the medication delivered to the PT office).  Maybe this will change in time---the ladies at Dr. G.'s office tried explaining everything to the insurance companies, and none of them understood, and refused to cover those costs.

We'll see what Tuesday brings.  We've had other things going on in our extended family that has taken up time and energy, and we've spent a lot of time praying over those issues.  I haven't been focusing on Anna's upcoming appointments, and I haven't been anxious about it at all, so it's not been burdening my heart.  However, there were a few details that needed to be worked out (a referral was required by Anna's secondary insurance, which seemed unusual to me---they've never required one before for any of her Hershey visits).  BUT, this requirement ended up in a conversation with the managed care specialist at our family doctor's office.  That conversation was interesting, because it was one of those God-moments, as she explained several things that happened---extraordinary perfect timing with people being in the right place at the right time because they were exactly the people she needed to talk to, etc.  I have no idea why all of this is necessary, but it all caused me to see how God is going before us---putting various people into just the right place at just the right time to ease the way and take care of some of the details.  And then the managed care person was also warning me that the insurance companies usually drop everything like a hot potato when anything "TMJ" is diagnosed---they won't cover ANY kind of treatment for TMJs.  Curious, because I know that Dr. G has already had several patients go through with this clinic and this procedure, and surely they didn't do it without any insurance!?!  (Maybe there's a different way these doctors code things to show that this is NOT cosmetic treatment, but treatment that affects a person's health and well-being?) I don't know, and I guess we'll get answers on Tuesday.  But as I was reminded (from a recent children's sermon at church, and a song that's been going through my head), we have a God who goes before us---our Rock and our Shield!  In troubled times He will provide, and we will not want.  No matter what Tuesday brings, we will trust.  (I'm also so very thankful that Anna is so mature in so many ways, so not hung up on her looks---but more concerned about her heart and who she is on the inside, and who God wants her to be.)

Such a long blog post!!!  If you have made it to the end, I very much appreciate your interest and your prayers for Anna and for our family.  THANK YOU!


Catherine in Alberta, Canada said...

Just looking through some different blogs by moms whose children have JIA or JRA. Found yours. Thanks for writing and letting the other concerned moms out there see another perspective. I too have a faith in God that is the source of my hope. My daughter's case is mild so far, but she is only 5, time will tell. God bless you and Anna! And don't worry about the pics for 12 grade. A few years later she won't care at all. Get some great grad photos from college or U, and then some great wedding photos. = )

Tammy Z said...

Hi, Catherine! Thank you for commenting on my blog and for your encouraging words. (And I always LOVE finding other believers!) I just posted another update. If you're on Facebook, I'd love to connect with you there. You can find me by searching for Tammy Barger Zeigler, if you want to.