I reviewed my blog today, and I saw that it's been 18 months since I last posted any updates. And this will likely be one of my last posts/updates. Much has happened in the past year and a half.
Anna had cataract surgery in December 2018. The surgery went well. the photo to the left is her prepping for the surgery---she prefers to put her own eye drops in!She did develop a film over her eye which needed to be removed. (Her cornea specialist had told her this could happen in a few days, weeks, or years, and he could easily remove it.) She saw him about two weeks ago, and he released her from his care (with the knowledge that she can call if she needs him). She really liked him! He told her that if she misses him, she can come say 'hello' when she sees her retina specialist.
These past eighteen months have also been a real shift into a different gear for this journey--or should I say, a new path for Anna. She has continued to grow as a young adult and has increasingly taken over more and more decisions. I don't even know about some of her thoughts and decisions sometimes (and I realize that's normal---I was the same way as a 21-year-old.) I've been reluctant to share some of this in a public blog, knowing that everyone will have their opinions. I know many JA parents read this, and this may be alarming at first---but the truth is, many of you parents may experience this in the future, too, as your young adults take over their own care. So maybe you need to hear this.
Anna stopped taking her medications (except for her eye drops---as far as I know) over a year ago. If you have read my blog, you know that the biologics are no longer an option for her, as they caused medication-induced lupus. (All of those Lupus symptoms went away when she stopped the Remicade.) Her rheumatologist was trying a few other options (Plaquenil, Mobic, along with Methotrexate). Anna had been on Methotrexate on and off (mostly on) for well over ten years (the years start to run together after awhile, and I can't even remember!). I don't know all that she was experiencing, but she was reading up on all of the side effects, and realized that besides the panic attacks that came with increasing frequency and duration when she even thought about taking Methotrexate (and even getting ready to go to the college's health service building to have someone else give her a shot), she was dealing with depression and a concerning change in her thought patterns. She is convinced that the Methotrexate was causing it. She began seeing a counselor (and still sees one now).
I urged Anna to tell her doctors about stopping her medications, and she wrote to her pediatric rheumatologist first to "bend his ear" about it (she probably felt safe with him, after being under his care for so long---he knew her before she was 2 years old.) He told her that the rheumatologists are never shocked or surprised to hear that their patients have stopped taking certain medications, but she also needed to be honest with her adult rheumatologist and retina specialist.
The good (I should say GREAT) news is that Anna's joint have not been a problem. (After what she experienced two years ago when she abruptly stopped Remicade, this is a miracle!---some have been praying for this for a long time.) Someone asked her the other day how her eyes are doing, and she said they are doing well. The left eye flared a bit (uveitis and macular edema, as well) after the cataract surgery, but she was told that is normal. She has received good reports at the most recent appointments with her eye specialists.
After almost two decades of me (Anna's mom) reading and researching and listening to doctors and trying to understand this disease (Juvenile Arthritis and uveitis) and how medications help and what could happen if medications aren't taken, let me tell you I had weeks (if not months) of adjusting my own thoughts! I've often thought of the Bible verse that talks about "praying without ceasing," and I'm thinking that every mother who knows God and understands the power of prayer must know that praying without ceasing is everyday life! No problem, there! Anna has two older siblings who have already left our nest, and I think I was thinking the third child transitioning to adulthood would be easier! Guess not. I have been learning SO MUCH about surrendering my children to the God who loves them more than even I do and wants to use them so that others may know who He is. He promises that He works all things for good for those who love Him and are called according to His purposes, so I need to trust that. I'm learning more and more about keeping my mouth shut and my thoughts to myself unless I'm asked, because how many 21-year-olds want to hear their mom's opinions!? Anna tells me that many of my opinions and philosophies are already ingrained in her head. And yet she is her own person with opinions that may not be mine. And we need to allow our adult children to make their choices---whether they seem wise or not in our minds. I know Anna belongs to God, and I know she loves Him and wants to follow Him. So I need to trust her to go in that direction (and continue to pray for her, knowing that I have no control over her life.)
So after 20 years (Anna was diagnosed in July of 1999), my role in Anna's JA Journey has come to an end. I seriously doubt that Anna will blog about her journey from here, although she is welcome to! But she is busy! She has begun a full-time job, and she is taking a non-traditional course of study at a Bible college about an hour away from here. She continues to be a co-youth leader at our church. Her social life has gotten a bit busier than it had been.
After almost 20 years of multiple doctors' appointments and keeping up on the latest advances in treatments and worrying about signs and symptoms of arthritis and uveitis, I no longer need to do that. In keeping with the analogy of a journey, it's like I've come to a fork in the road, am able to put down my backpack/burden of JA and uveitis stuff/knowledge, and allow Anna to continue on, while I look around me at the landscape ahead and decide which direction to go next. Before my mom passed away this past January, I was telling her that I now have all this time I didn't have before, and I was figuring out what I need to do next. She said, "Maybe you need to REST." So I have spent a lot of the last two years intentionally slowing down. And still praying about what's next. (And at this moment in time, "what's next" is spending more time with extended family, as we continue to grieve the passing of my mom and several months later, one of her brothers---don't take your family for granted! Love them! Spend time with them!)
So thank you to all my family and friends who have faithfully read our updates over the years, and to those of you who have prayed for Anna and for us so faithfully. (We can still use your prayers!). I still belong to some of the Juvenile Arthritis and Uveitis Facebook groups, although I don't always feel that I have much to contribute. The JA and Uveitis moms I've become friends with over the past two decades have at times been a lifeline and a huge support for us and some remain friends to this day. I encourage anyone who is dealing with this or anything else to find a group of friends who can relate and understand what you're going through.
And if you find that your teenager or young adult is struggling, PLEASE prayerfully consider counseling for them. Don't hesitate to talk to their doctors about it. Sometimes I wonder if we should have pursued counseling earlier.
One thing I KNOW to be true for us---God has been so faithful. His love has never changed. During the toughest parts of this journey have been times when we have felt closest to Him. He truly has been and will continue to be our strength in all of life's journey.
