My disease progression continues, but this time it’s different. I can live without the use of my legs; I can live without the use of my arms. It’s not easy, but doable. But now, my progression is reaching the point of life or death. I can’t live without eating or breathing. Thankfully I’m not there yet, but I’ve made the turn.
First, is an esophageal motility test to determine if I need a feeding tube. I can still eat but often choke when saliva hits my vocal chords. Aspiration is the concern. Pasta doesn’t belong in my lungs.
I already have a Trilogy ventilator that breaths for me when I sleep. Love it. I will eventually need it 24/7. I also use a cough assist and suction machine to make up for my compromised respiratory function. All this, combined with an atrophied tongue, compromise my speech. I can still be understood in a quiet environment, but I will eventually lose my ability to speak. That’s a bummer because I love to talk.
So it’s different this time because this function loss is terrifying and requires life or death decisions. My world is shrinking and I’m reluctant to embrace the new normal. I will eventually, but I’m not there yet. A crystal ball would come in very handy right about now.
Where do I go from here? I could stay in bed and wait it out. I’m not a fan of that option. Instead, I will work through this and return to gratitude asap. How will that happen? I’m not sure, but this is what I’ve done so far:
- Been sad
- Been afraid
- Questioned everything
- Made a doctor appointment
- Been depressed and withdrawn
- Been frustrated
- Cried, sobbed, and yelled
- Had a pity party
- Went to support group
- Felt better
Here’s what I’ll do next:
- Finish writing this blog post
- Stick close to family and friends
- Take the esophageal motility test
- Decide what, if any, surgery to have
- Grieve when needed
- Stay present and grounded in my faith
- Enjoy time with family and friends
- Kiss my grandkids
- Redirect negative thoughts and return to gratitude
That’s my ten-step process to moving past recent losses and adjusting to a new normal. What about you? I don’t corner the market on difficult times, how do you walk through yours?
I’m Forgiven and Free and adjusting to a new normal