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 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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Thursday, September 23, 2021

"Hal" vs "Alexa"

 

One of the things I need to do for myself is to admit to my own weaknesses.  I have to quit pretending I am not sick….PS… I hate being sick.  I have spent the best part of the last few years trying to prove to me, my family, and anyone else in my sphere that I am fine.  I am tough, strong, invincible and that list of adjectives goes on and on.  I think it worked!

Recently things around the house are changing, they are my daily physical reminders that it is not true anymore.  One of the first was the installation of several Amazon Echos around the house so I could call for help from any where in the house, plus I am “hooked” up to my son’s system so he can check my door cameras.  When I want to turn on a light, fan, radio station, charge the thermostat setting or just about any other question I have, I can say “Alexa” and she answers and makes it happens! 

Since day one of the first Echo install, I am mentally whisked back to Miami and the premier of 2001 A Space Odyssey…it was a big deal, we even dressed up to go to the Coral Gables Theater opening of the movie. I only remember 2 things about that movie…the obelisk at the end and “Hal”.  I thought “Hal” was amazing almost as cool as Dick Tracy’s watch, telephone, and video screen.  I have a watch that does some of those things and a cell phone that does a ba-zillion more things than my first 25 lb. computer.  So, the verbal commands should not be that big of a deal.  But they are!  I am still giggly when my house (or a spaceship) answer and perform tasks I simply ask for is here in real life.  Not a day goes by that when I call for Alexa that for a split second I am mentally transported back to Miami and a group of Jr. High School friends, that movie, and of course “Hal”.  It reminds me of such happy times!


Tuesday, September 21, 2021

Hacking

 

 I am not saying all of these work, but some do,  not all work all of the time.  Some days I just throw my hands up and say to hell with it and crawl back into my bed and binge TV.  And I am way too embarrassed to tell you what I watch.  I guess what I wanted to put out into the world today is that I am trying…not always successful, but trying…

Monday, September 20, 2021

Broken Promise # 32-B

 

So… 3 Days into my promise to myself, I blew it!  Missed yesterday’s “Morning Pages” altogether.  There were several times I was aware that I needed to do them, and then consciously decided not to…so I cannot even claim that I just forgot. For reasons that I do not understand myself I just chose not to write.

I have been overtly aware of the dates, with more Doc Appts coming up. I know everyone is aware of the fact that I love being in my little house, it is my safe comfortable place and I have no intention of leaving until the mortician wheels me out.  Of course, I have been modifying small things around the house, but the one thing that never occurred to me that would significantly impact my plans would be losing my vision.  And yep, that is what is happening.  Lack of blood flow, steroids, and age are all reasons for the damage in the lens in the back of my eyes.  The good news is that they can remove the old damaged biological lenses and replace them with manufactured ones that the current situations cannot affect.  With the other health issues I have, there have been extra precautions going into this very simple and often performed procedure, so there seem to be no physical reasons I cannot have it, now we are working on everyone’s official thumbs up.

And yes I am I little scared, but I am more afraid of not being able to live alone in my own home !n my little house, it is my safe comfortable place and I have no intention of leaving until the mortician wheels me out.  

And yes I am I little scared, but I am more afraid of not being able to live alone in my own home!

Saturday, September 18, 2021

Is There A rehab Clinic for This?

WARNING!!!!

Whining ahead...

It is Saturday morning and I have nothing spectacular or new to write about, but writing I have promised myself so writing it is...I guess one of the things most people do not understand is how heart failure works.  I surely did not and I have it!  The doctors are vague (which is shorthand for they don’t either) The overall description I got is after a while the body’s organs and muscles are starved of blood flow and begin to break down.  Apparently, there is no specific order that defines which will fail first or worst.  And there is another interesting phenomenon, the heart slows the organs react and often times the body “recalibrates” and learns how to do with less.  That often stops the original aches and pains but leaves me even more tired as my body directs its energy toward simple functioning, anything extra becomes increasingly exhausting.  The most difficult and painful management lately is called ischemic bowel syndrome.  In laymen's terms, my intestinal tract both upper and lower are no longer functioning like they should.  It has taken months and pain meds to manage this one.  Most people worry about getting addicted to pain meds....I am certain I am now addicted to fiber and laxatives just to stay pain-free.  I do not think there is a rehab clinic for this. 



Friday, September 17, 2021

I promised...


 I promised myself to keep writing, and I know this is probably dumb and boring but I need to step back into it.  Perhaps dumb and boring is the beginning.  

Part of this journey is my iron will to stay in my home and die here in my own home.  I know that must sound so morbid to most people, but this is my safe comfortable place.  It is really important to me.  That has meant some minor changes to the house.  Which I have learned the hard way was build way before there was an ADA compliance code for residences!  Occupational therapy people came in, showed me what need to be changed, and taught me tricks of how to take care of myself.  Physical therapy came in to teach me how to maintain (as long as possible) my balance and ability to move around safely, without falling down.  Who would have thought someone would need to teach me that!! 


One of the big changes was the glass shower doors that Skip installed me ages ago need to come out, they presented the most dangerous possibility of me really getting hurt.  So here is the new shower curtain that I sewed on and potty modification.  Not excited about either, but secure in the help and safety they both provide. 

Thursday, September 16, 2021

Everything Changes

 I had given up writing, although I tried not to, it just happened,  I have no explanation.  It just did not feel good, I found making stuff up because I thought that people expected of me.  To be entertaining, stoic, strong, focused and the list goes on.  Dealing with a huge loss where I lost half of my life, navigating my own health challenges, and then we have the ever-present covid.  What if anything did I have uplifting to contribute to the world?  I stopped.  

Now perhaps I need to start addressing the issues out loud, from a perspective I do not understand.  Tip going back to the emotion tools from Artists way, I need to look at my writing, not as a way to inform, entertain, share feelings and perhaps give up mild hints about how I am dealing with w chronic terminal disease.  Luke Julia said, it broadcasts to the universe what I want, what I want to let go of, and to identify what I want, what is possible and a way to cast the negativity out of my life.  I know things are changing, so will the blog.