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my life is a mystery

My life is a mystery. I have not been around much I’m sorry. Lots of sleeping, pain, depression and emotional burdens. My life is a huge puzzle of 70, 000 words all over the place.
The people, who are very few, i can count on two hands. My visitors are the postman, ups guy, fedex, home health nurse only on Friday. I get multiple calls from Northern light pharmacy I am pretty sure we are best friends now.
Today I told Nicole if we can’t get the pain under control I would ask to be on Hospice. However, I need to finish my book. Nicole asked me how much do I have left and I explained it takes 70000 words to be a novel and I am only at 12269 words.
So we talked about what I wanted when the book was done. I want to an open casket for closure, for those that may need it. Cremated and ashes given to whomever wants. Nicole gets her letter Z. Something you will read about the Z and it’s meaning later on. I would love a bench under a tree that provides shade and comfort when anyone were to visit. We read about cemetery rules and pricing. Our plan is to go on a adventure to find a home for my ashes.
Then I found the bench, It is perfect for hugs, reading, a picnic and more.
Then palliative came to the house where they started to look at each piece of the puzzle to figure out a plan to give me more time and allow for more time. More time for adventures and to finish my book.
It’s amazing how much it takes to keep one operating. Even if one was healthy all of the times you shoved all your darkest moments in a hole letting it build.
Today we scratched the surface but hopefully with time, patience, counselling, continuing to share, getting help for caregiver burnout, finding friends that want to visit without feeling guilty, getting pain under control, more help that is invested and skilled, finally going on more adventures to one create more memories and two spreading awareness for ALS, TRACEOSTOMY, AND quadriplegic patients. I want to share as much as I can, my love for my family, life and my faith.
So that is what is going on with me currently. I’m trying.
Also welcome to the team nurse Stephanie, I look forward to day two. You brought some great ideas that have helped already. We appreciate you!

David and Tammy
Published inALS
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