Thursday, August 09, 2012

"Normal" Life for the Next Ten Weeks, at least . . .

Our summer is coming to an end, and it'a been an extremely busy one, with four weddings to attend.  While that meant some fun events and quite a bit of time spent with family and friends and traveling, it also made the summer seem to fly!  Cross-country pre-season training begins on Monday, and school starts two weeks from then.  Anna will enter the high school as a freshman this year.

Since I last wrote an update, Anna has had an appointment with the rheumatologist, another MRI of the TMJs (no results yet), and this morning she had an appointment with the ophthalmologist.  The rheumatologist appointment was basically uneventful (that's a good thing!), except for the fact that Dr. G. has decided that Anna should really have routine MRIs every six months, given her history of active arthritis in the TMJs (hence the MRI last week).  Our insurance covers those costs (thank the LORD!  they are expensive!), and since her arthritis is mostly asymptomatic, I welcome the MRIs, because then we have a better picture of what's going on.

That also paves the way for some other decisions to be made.  While Anna needs orthodontic work, she cannot have a lot of metal in her mouth to have MRIs done.  Since I now know that she will have regular MRIs, I can discuss this issue with the orthodontist and see if there is anyway to improve some of Anna's bite issues and teeth issues with something that is not cemented to her teeth.  I have no idea if that is a possibility, but it at least gives me a place to begin a conversation with the orthodontist and discuss some possibilities.

Dr. G. also mentioned the possibility of decreasing the dose of Humira (depending on how the next few months go).  That will depend mainly on the uveitis.  Good news on that front this morning!  Anna's eyes are totally clear of inflammation once again!  GREAT way to end the summer and start the school year.  No more daily eye drops, at least for the next ten weeks, when we have the next eye appointment.

So for Anna, for the next ten weeks at least, life will be relatively normal (save for the weekly Methotrexate, twice-weekly Leucovorin, and Humira every ten days).  While years ago I would have spent time thinking (and worrying) about all of this powerful medication that goes into her body to severely suppress her immune system, I have settled into a place where I've learned to take each day for what it is and focus on what is true and good.*  What's true for today and this moment?  Anna has a great quality of life.   For that I am very thankful.  I'm thankful for doctors who are moderately aggressive and do all that they can to ensure that active arthritis and uveitis is not a constant thought at our house (for today).

I know that many children and teenagers with various types of arthritis and rheumatic diseases still deal constantly with pain and inflammation (even children and teenagers who see the same doctor as Anna---with a moderately aggressive approach to battling these diseases).  I have no answers as to why some families get little relief even with powerful medications while patients like Anna respond well and can live a normal teenage life.  I share this blog as a possible ray of hope for any parent who is where I was mentally and emotionally over 12 years ago when we first received the diagnosis.  I wanted to know what Anna's future would look like and scoured the Internet for stories of other Juvenile Arthritis children and teenagers.

I memorized the following verses when I was a child, and lately I've been remembering them and thinking about them a lot --- remembering where my focus should be and remembering that there is a peace available which is not always understandable.  I share these verses here, just in case they speak to any of you:

Philippians 4:6-8 (New Living Translation)

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 



Joanne said...

Hi Tammy! So glad to hear about her eyes!!! Does she need to go back into ortho? I wonder if doing the clear ceramic brackets would be an option for the MRI's. The wires can be removed easily for the MRI and they wouldn't have to touch the brackets. Something to ask,anyway.


Anonymous said...

JRA Mom here to thank you for your inpiring post and scripture. Just recently my petition to the Lord was to receive guidance and wisdom as to where next to turn for tx for my 14yo daughter who increasingly suffers with JRA. She was diagnosed at 7 yo. She was on methotrexate and ENBREL but removed soon after as her father and I were extremely concerned about the label stating its side affects and warnings. So now she manages the pain soley with over the counter ALEVE. Your post inspired me because your concerns supports my concern, in terms of longterm affects of being on these black label drugs, yet through your faith and focus on trusting the Holy Spirit to guide you, you made the decision to place Anna on similar meds and now seem to allow her to live a normal life with JRA...something for me to really ponder over...thank you again! Traci-Tolland Connecticut

Tammy Z said...

Dear Joanne---I think I already responded to your post via Facebook (this is the first I've been back to the blog in a few months---I ended up having to reset my password). I so much appreciate your knowledge and expertise in the dental and orthodontic field. I will come back to your comment on this post when we decide to have a major conversation with the orthodontist. Thanks!

Tammy Z said...

Dear Traci-Tolland, Oh, how I hope you receive a notification in your e-mail about my response to your comment. I have had a challenge with time and with remembering my password for this blog (had to reset it today), and I haven't been on here to get to the comments in quite awhile. I love how the Lord works, and He is the reason I first started this blog, as I felt that I needed to be a resource and source of light and hope to others as we travel this JA journey. My Anna has never been able to take Aleve (concerns about facial scarring when she was first diagnosed, and then we had to take strong measures in order to really combat the uveitis and get it under control). If you are on Facebook, please, please look me up. I would love to be able to connect with you on a regular basis as you're traveling this journey. (We also have a private group on Facebook of JA moms, with discussions about medications, side effects, experiences, etc.). You can find me by searching for Tammy Barger Zeigler. Otherwise, you can send me an e-mail. I used to have a contact link on this blog---I'll have to make sure it's still there and working.