life, love,art. heart failure and assorted ramblings

life, love,art. heart failure and assorted ramblings

Don't Talk Like That...

I write to find out what my heart thinks....

I write to expose and work through the ugly parts of this raunchy disease. My words always help me understand that in this life there will be times that are crappy painful and unexpected but tucked in there are the amazingly wonderful, too. That is when I realized the only control I have over any of this is how I chose to experience them! I realized that I could understand, celebrate can survive even better when I could express these feelings with my own words of courage, humor, and grace. I am the Queen of my own life and the choice is mine!

I am here to celebrate my life, to uncover my fears, to hold on to love, to grieve my losses, to laugh long and hard, and to learn how to live a full magnificent life with heart failure.

I am honoring my creativity, and exploring all of my emotions out loud ...before anyone can say....."Don't talk like that!"


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Monday, May 28, 2018

I Want to to be a "Spoonie"

I suspect anyone living with a chronic illness understands how it feels to take literally pounds of pills, to ignore or struggle with depression, or wrestle through the simple tasks of life. If the illness happens to be “invisible,” even good friends and family can have a hard time truly understanding what it feels like. I am never sure how to respond to greetings of “you look great”. I am truly convinced that if you have not experienced a long-term chronic illness that this may be really difficult to understand.  I can only assume that looking good means that I am not emaciated and that I have all of my hair.  Even I have to admit that is a pretty low bar to get over to the “you look great” category!  I will take it anyway!

I play games with myself.  One is I get up and get dressed every day, does not matter how I feel….period.  Get up...get dressed in street clothes.  I make the beds.  I do the house chores.  This is my last vestige of normal.  I used to hate all of these things; I did not realize what a blessing it was to just simply have the energy to do them.  I never had a grasp on how to manage my energy…there was always energy (that was never an option) my challenge used to be finding and using my time well.

Today I was introduced to a visual way (of course that appeals to me) to manage or actually be aware of my energy level and to choose how I want to spend it.  There is a group out there that call themselves “spoonies”.  They apparently have the same problem I have about managing energy.  The give themselves a bouquet of spoons that represent a full day of energy and then subtract the spoons as their energy is spent, providing a  clear visual picture of what I can or cannot do without wearing myself out or making myself sicker.  I think I am going to try this….clearly, I need to do something to get this energy thing under control!  Besides, it gives me a great excuse to find and collect some very cool artsy spoons! Woo-Hoo!
"Shine" Jason Mraz


Never mind!  As it turns out I already have funky spoons I found at a second-hand store quite some time ago. They were labeled as "tasting spoons"  I had no idea what I was going to do with them a couple of years ago so they have just kind of sat around..

But now I know  exactly why they came into my life  With a wine glass (I have plenty of those) to hold my bouquet of funky spoons

... I am officially a spoonie!

Stay tuned...I will let you know how it works!

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