2016 Fall SOJIA: Health Jenga

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We just got back from Mayo.  The hospital.  Not the condiment.  In case you’re confused.

Cee’s labwork looks normal.  We monitor her inflammation markers and liver numbers every few months.  Good.

Cee’s x-rays look clear.  We have x-rays done yearly to assess permanent joint damage and the overall state of her joints.  Good.

Cee’s exam by her rheumatologist shows no swelling of the joints and little limitation to her range of motion.  Good.

If everything is so hunky-dory, why do I feel anything but good?

Jenga.  I’ve always hated the game Jenga.  Everything is fine…until it’s not.  Our appointment was Jenga-esque.

We have been tapering Cee’s medication sloooooowly over the past year.  She’s now completely off the steroid.  We’re down a fair amount on her Methotrexate.  Her monthly infusions remain untouched since that’s probably handling the lion’s share of her disease.

The question we were left with today: to continue the Methotrexate taper or hold steady.

Methotrexate is a chemo drug.   The ugly yellow liquid is actual poison that David injects into Cee every week to turn off her immune system.  Cee’s dose isn’t quite high enough to make her hair fall out, but the nausea bothers her the day of and the day after her weekly shots.  Two days a week she’s guaranteed to feel crappy thanks to Captain Methotrexate.

I used to be on Methotrexate injection duty until I got pregnant with Bea.  It’s so caustic that I couldn’t handle the medication while pregnant.  David’s been in charge for almost two years now.

The weight of his sacrifice is not lost on me, when he refused to turn the job back over after Bea was born.  I would dread Methotrexate Day to the point of being nauseous myself.  Now he’s the one with tears in his eyes every Friday.

You can see why we’re on Team Taper.  But– like the game of Jenga, lowering the dosage might remove the brick that shatters our year of general peace and stability.  To quote Cee’s rheumatologist, “When the poo-poo hits the fan, it really hits the fan with her.”

Ultimately the doctor left it up to us.  Cee’s dosage started at 1.0 mL/week.  We’ve tapered to 0.7 mL/week over many months.  We have permission to go as low as 0.4 mL/week, decreasing by 0.1 mL per month.  Tiptoeing around the Jenga table.  When will it all fall apart?

 

One of my favorite movies of all time is Return to Me.  It’s got everything a good movie needs– hilarious old guys, an Irish-Italian restaurant, and family with a mess’o’kids.  Plus it stars the thin famous version of David and me.  😉

There’s one scene in the doctor’s office where Grace confesses that she feels guilty for having bad days.  After receiving a heart transplant and a new lease on life, she doesn’t feel like she should be allowed to feel sad.

I’ve felt that quiet, nagging feeling all summer.  Cee is doing so well.  How can I not be completely contented?  How can I move to acceptance of the current moment from this place of sneaky fear?

Faith?  Trust?  Hope?  All those lovely things.  But how to actually get there?

I think my first step is to read Psalm 34 every day.  I’m not sure how I stumbled upon that particular psalm a few months ago, but I’m glad I did.  I’m going to print it out and tape it to my cupboard.

My favorite bit of wisdom comes from verse 6,  “Look to him and be radiant.”  

It makes me realize that when I am at my most anxious, I am at my least “looking to Him.”  Coincidence?  Probably not.  Although things don’t magically get easier in looking to Him, they do get easier to bear.  That’s an important distinction.

While we won’t be reckless in our tapering, we will try it.  If Cee gets sick and her immune system revs up, we will probably be right back where we started.  Steroids.  Pain.  Mucho Metho.  But I’m working on the constant fear.  Moe has helped with that.  How can I be a germ-o-phobe when one of my kids literally licks the walls?  Nothing like a wall-licker to put my lack of control in perspective.

We’ll do what we can, and look to Him.  It feels better already.

sojia

17 Comments


  1. // Reply

    Prayers the taper goes well! Jenga is probably the best analogy I’ve heard for what it’s like figuring out medicine dosage.


    1. // Reply

      Thanks, Kirby! It’s been the prayers of others that have gotten us through the ups and downs. 🙂


  2. // Reply

    You have found an excellent analogy. Prayers for you all, for success in the taper!


  3. // Reply

    Oh boy. That sounds like no fun. What a cross to bear for all of you, in different ways. I’ve read a bit about SOJIA from your blog, is it something that can go into remission for awhile? Traditional arthritis can do that, can’t it?


    1. // Reply

      With Cee’s more serious form of arthritis, it is unlikely she will ever go into complete remission. It’s more likely that she will go between “medicated remission” and flares forever. Some people do go a few years without a flare, though, and their medication continues to work. The tricky part is that there is a finite number of medications to try. Once we run out…


  4. // Reply

    Thank you for this update. I will continue to pray.

    I have anxiety to the point of insomnia and, last year, panic attacks. This is a beautiful meditation for me to consider:

    “It makes me realize that when I am at my most anxious, I am at my least “looking to Him.” Coincidence? Probably not. Although things don’t magically get easier in looking to Him, they do get easier to bear. That’s an important distinction.”


  5. // Reply

    Keeping you in our prayers! Hugs


  6. // Reply

    I’m so happy I stumbled across your blog… Catholic homeschooling mom here, of 2 chronic illness/autoimmune/ autoinflammatory kiddos, too. I SO understand the Jenga analogy, and know the absolute frustration that comes with waiting for that other shoe to drop…. I’ll be praying for your little girl, and will be following your blog/fb page. 🙂


    1. // Reply

      That’s such a specific list of adjectives to have coincide! Thank you for your prayers and for commenting so I can check out your blog. I look forward to learning your story. 🙂


  7. // Reply

    Alicia,
    What an honest, faithful approach to real medical issues. Wow, I had no idea! God bless you! Praying for your family!


    1. // Reply

      Thanks for your prayers. They are much appreciated. 🙂


  8. // Reply

    Oof. So, so hard 🙁 Thank you for sharing your struggles – I’ll be praying!!


  9. // Reply

    I hope you figure this out. Jenga is a perfect analogy for what you’re doing right now. I had a similar thought a year ago when I was waiting for my baby to get out of surgery – faith in God and fear of the unknown can’t really coexist.


    1. // Reply

      Thanks, Jenny. It really is a constant battle between having faith and being fearful, and every day (every minute some days) offers a choice between the two.

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