Faith / Medical

Here and There

It is strange how sometimes I am able to use Tobii to write what’s on my mind despite all of the powerful drugs coursing through my veins. I am aware that many dear friends, and strangers too, are praying. That must be the reason.

I have been thinking about our friend Betty, one of our first friends we met through our ALS support group, and what she said a few months before she died. She said she felt like she had one foot in this world and one in the next, or words to that effect. I have been feeling that way myself lately.

Physically, the disease is doing what it does. More weakness in all areas. My appetite is declining. Most of my calories come via my G tube in the form of a specialized formula. I still enjoy small amounts of soft foods and drinks through a straw, but I tire so quickly that it is not the best way for me to eat. We can tell I have lost weight because the safety belt on my shower chair was getting looser. Alan has tightened it.

Emotionally, I have been all over the place lately. We recently received the sad news that our dearly loved Uncle Jim passed away the other day in Indiana. He was Alan’s dad’s brother. Auntie Jerry has dementia, so the cousins there have their hands full.

Then we have the publishing of my article in the MDA’s Quest magazine, both online and in print!qeygz (Why did they have to make my picture so big?!)

So excited to be a published author! Although, we’re still waiting for the promised check to arrive. Hmmm…

My frustration with using Tobii when the meds overwhelm my ability to keep my eyes open gets me down sometimes. It drives me to tears occasionally. Which doesn’t help at all, because then my glasses fog up, my nose runs, and I am generally a mess. Not very pleasant for Alan or whoever is nearby.

ec02c2ae-39b0-476b-95be-da8b062d2d6dThen a surprise delivery of flowers arrives, a gift from a very dear friend, after I whined a little in a Facebook post. (I prefer to keep my personal Facebook page private and separate from the blog. I hope you understand.) This was a most welcome, and timely, day-brightener that continues to make me smile every time I look at it.

Spiritually, I am more aware each day of the nearness of God. He is my strength and my peace in the midst of all this. My thoughts often wander to the reunions happening in heaven. I picture Uncle Jim and his brother, my dear father-in-law, and their parents and all the others who have gone on before us. What a beautiful celebration that must be! How I look forward to being a part of that!

But then I think about the people I love who will be left behind when the time comes. It is difficult to get too excited about what I have to look forward to when I know that involves leaving so many people I love.

Last Sunday we made it to church. That’s two weeks in a row! Hey! We’re on a roll! This past Sunday, the band did Hillsong’s “Oceans,”  one of my favorite songs.

“… For I am Yours and You are mine.”

One foot here ; one foot there. I will just keep on trusting the One who holds my future in His hands.

Love, Patty

9 thoughts on “Here and There

  1. Patty – your messages are always a reminder to be grateful. Thank you for them each time you are able to write – your ‘followers’ so appreciate you overcoming the challenges it takes you (and Alan) to post!


  2. I have prayed for our wonderful Lord to give you special help these days, knowing that it will be so great to be “with Him” but knowing the difficulty it will be for your family. You see I have some of these same feelings. I wish I could see you, but you know my
    lack of mobility as well. Love and prayers.


  3. Just read the Quest article and your faith is so much as my mother’s. She was diagnosed in her mid-50s after several years of problems some deemed were in her mind. She went home to our Lord when she was 78, infection complications from surgery. My father’s care for her gave me a beautiful example to follow when my husband was diagnosed with Myasthenia Gravis when he turned 70 in 2011. MG also is under the MD umbrella. When we do pray without ceasing and are able to find “Thanks!” in all things, we see peace that can pass understanding. May the Lord bless your witness.


  4. Hi Patty,
    My name is Tamara. Thank you for your wonderful blog. Your writing invokes a range of emotions when I read it, but it also conveys how much of a strong woman you are. I work for a medical equipment/supply company (YouCare Medical) and shared your blog with them. They have asked me to reach out to you to offer support. If you need assistance with medical supplies, please do not hesitate to contact us. Please email: and let them know Tamara reached out to you. Peace be with you as you!


    Tamara Argueta

    Liked by 1 person

  5. Patty,
    I read your article in Quest. It really touched my heart! Not only do we both share the same name, but we share a faith in God and His Word. I also love the song you posted is one of my favorites! Both of my sons and I have FSHD..muscular dystrophy. But my walk with God and His pouring over me helps daily. I will keep you in my prayers for God’s continued Grace to carry you on this journey of life and His Mercy to pour out of your daily, and His anointing to be the lifter of your head.


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