Breathe in, breathe out

The two biggest factors in ALS ratings, apparently, are the ALSFR scale, and lung capacity.  So every visit to anywhere I fill out a 1-5 scale on if I can swallow, eat, hold a fork, get dressed, turn over in bed and move the sheets, etc.  Mundane stuff really, that you don’t think about until it’s hard to pull the covers up, or hard to button.  Or if you start to fatigue just talking, like me.  I joked that a half hour conversation could have taken 10 minutes if I could speak normally!!  (It’s really ok.  I could probably get super inebriated and no one could tell the difference!)

So this test, in the picture, makes me panic a bit every time.  Lung capacity.  And… uhm… the test “blow hole” for lack of a better word is so wide that all the air comes out at once and you feel like you are failing.  It doesn’t help they are saying in the background “push push push push push good!”  (Delivery room flashbacks!). It also doesn’t help that Mel is the room taking pictures and making me laugh while doing it!!  But seriously, do you see that picture???

Which leads to the irreverent attitude I have in the dr. office.  I don’t know about you, but life is hysterical.  The fact that I have this disease doesn’t make it any less hilarious all the things we go through!  Mel made me walk all the way across the hospital to reach a clean bathroom.  I couldn’t stop laughing the whole way!  The OT wants to give me a carbon fiber foot brace for foot drop… I get my pirate peg leg!  There are so many positives that I can’t stay serious for too long, I’ll go insane!  (And, I am active.)

All this to say, with all the news going on in my life, all the blessings, kind words, prayers, monetary help, and people I’ve never met just willing to help, I feel more at peace than I have in the past.  This clinic visit was harder than before, but I left with a real view of the road ahead.  And I breathed easier.  The road is hard, the struggle is real, but with God, the saints and angels, my family, my companions, we’ll make it.  Breathe out.  God’s in charge no matter the outcome.  So smile, laugh at yourself, because life is hilarious!

3 thoughts on “Breathe in, breathe out”

  1. Joe I finally have a free moment in life (what?) to sit down and rest and well I happened upon your blog through some facebook links. Its been years. I am praying for you and plan to offer my Lenten sacrifices for you and your family. I am so deeply touched by your inspirational words as a past friend and nurse. That you feel so lucky to have been diagnosed with ALS. It makes me think about your tattoo and the symbolism of your journey. Who knew when you got that what life had in store for you? When my husband got very ill a few years back, I remember the tangible feeling of grace. Life was at its lowest but I felt completely at peace because grace was holding us up and our community kept us fed and going. I hope you and Mel are experiencing the same thing. I will be reaching out to Mel to see how we can help lift you up. Much love from myself and my family to you and yours.


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