Another Reality Check

I had my swallow test at the hospital yesterday.  It was one of those “to dos” that I wasn’t motivated to do.  I find the ongoing tests and evaluations in this journey distressing because I go into them knowing they’ll highlight the progression of the disease without offering a cure or real solution…and that’s just plain depressing.  As wonderful as my team of medical professionals is, the nature of the consults are bubble bursters in my ongoing effort to remain optimistic and see the glass as half full.  🙂

The information gathered from swallow tests specifically helps to determine when a feeding tube will be necessary.  Ugh!  When I was first diagnosed in September, I knew enough about ALS to know feeding tubes and breathing tubes are part of the ALS journey but, to be honest, my gut feeling about how I wanted to approach this disease at that time was to do it naturally…to let it take it’s course naturally…and not intervene.  Well, now I’m confused because when I envisioned having to decide whether or not I’d get a feeding tube, I pictured being bed ridden and having poor quality of life…why prolong that scenario?  That certainly isn’t the case now and the factors in deciding to get a feeding tube aren’t so black and white.  The decision to get a feeding tube is not just based on whether or not the mechanics work but also on the amount of effort it takes to eat.  Although I can still chew and swallow, it is taking me longer and longer to eat.  I really have to focus on chewing and swallowing and eventually the effort to do so will be too much.  I honestly didn’t think I’d be engaged in discussions about feeding tubes this early on in the process.  Some suggest getting the feeding tube sooner rather than later to get used to it before you’re dependent on it.  I’m not there yet.  I’m still not sure how I feel about it.  My speech pathologist said I’ll know when I’m ready and I’m counting on that.  Ongoing prayers for ALS to be completely lifted from me are greatly appreciated but, in the meantime, prayers for a supernatural ability to continue eating naturally and discernment in the process of the disease as a whole are coveted too.

As much as I hated to get the swallow test done yesterday, there were a couple of silver linings…

  1. My friend Bob was my xray tech during the test…

IMG_1683

 

2. And look how Rudy showed up!!!  My hummingbird earring was captured in the xray video…perfectly perched front and center keeping an eye on things.  🙂  I love that.  Hi Rudy!

My next reality check will be a lung function test with the pulmonologist next week but after that, we’ll get a break from any BIG discussions until my next appointment with the neurologist next month.  In the meantime, we’ll have some fun with Oma who arrives today for a weeklong visit.  Thank you for the Mother’s Day love and encouraging notes/comments/messages and thank you for persevering in prayer with us!!!!  How very grateful I am!!!

7 thoughts on “Another Reality Check

  1. Well, CRAP!! That’s my deeply spiritual input today. Lord, have erect. Christe Eleison! Love you, beautiful one.

    1. Who doesn’t love a pastor who starts off with Well, CRAP!! Thank you for saying, in such eloquent terms, what we’re all thinking!

  2. Praying for you—for complete, radical healing!!!💞🙏🏼✝️
    Hope Rolf enjoyed his birthday🎂
    Congratulations to Olivia!🏆
    Love you guys so much!!!

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