"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!

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…

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!

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. 

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. 

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. 

I am here....

 I am here....I am here....I am here....It has been a long time and I have learned so much about me and about the world.  I am going to get back on track....crossing my fingers!

or...maybe it is just me.

 Yes, I know…I have been silent recently, just happened, no particular plan.  There have been “things” going on with my heart that have required attention and sometimes that just takes over my life.  In the activities to normalize my heart function it was necessary to have someone with me all of the time and I am indeed grateful for my sisters and friends that are more than willing to do that for me, but I have also realized that even in the company of loved ones I am lonely….and lonely is not something that has ever really bothered me, in fact alone in the studio is wonderful.  It has been a strange week as I try to figure out why.  The Jung quote has kind of given me a start, not the part of holding certain inadmissible views, as an artist that is kind of part of the job.  I think it is communicating things that seem to be important.  As this disease becomes more a part of my life, it is difficult to talk about, even the professionals that are spectacular at providing physical care do not seem to have the time or ability to talk about the emotional side of dying.  For some reason, it feels like most feel like we should just lay down quietly, that at some point the diagnosis is an accepted fact.  The FACT is that it is a gross violent emotional swing between…. I cannot let this happen to me and I am tired and I just want it to stop. Somewhere in-between those 2 opposing feelings,

I need to comfort those that do come close to me.  It is crazy confusing and no one seems to recognize the frustration, or….maybe it is just me.

"Me" Paula Cole

Yes, I had the time...

 
And there comes a time when I realized how much of my life, I spent doing this.  It was not how I saw it at the time, I saw it as sharing my gift, not begging for your attention, admiration, and love.  I rolled up all of my inadequacies in a bubble of good helpful intentions, which should be a good thing.  But in covering up my shortfalls, I ignored my own authenticity. And the bill is now coming due....Not to mention Blogger is updating and changing the rules....AUGGHH!

You had time...

Annie DeFranco

Cannot explain it better!

I could not explain this better, so I will not even try!  

“When sudden death erupts into your life, your whole way of understanding the world is rocked. Previous interests – even things you loved – can seem futile.

For many people, year two is worse than the first: your systems begin to come back online, your gaze is just slightly lifted from your feet. You’re aware enough to know you aren’t where you want to be, and still broken-hearted enough to not be able to do anything about it.

That you want something different for yourself, even as you have no energy to find it – that is the beautiful place. That’s the place to lean on.

If there is any glimmer of interest, any spark of light or fascination, lean into it. Want that for yourself. Take notice of what draws you, right now, and follow it. One tiny little glimmer at a time.

And sometimes, there are no sparks. The world is empty and full of things that make you cry. You want it to be different. It isn’t different.

You can’t fake interest. At the same time, you don’t want to be this way. Being angry at your own broken-heart is such a tricky thing. It turns into this giant, escalating storm: tears. Then angry at tears. Then angry at yourself for being angry. And on and on it goes.

What this is is a broken heart inside a deeply changed human, still alive in a world that doesn’t make any sense.

The path here is to honor that, somehow. To allow it, to let it be okay that everything sucks and there is no point.

It isn’t easy. None of this is easy.

And you are here, still, now.

You deserve a life that is honest and true, even – or especially – when what is true is pain. When what is true is the blank space: the places that haven’t filled in.

The road here, the ‘what do to’ here, is to want love for yourself, even when you have no idea what that looks like.

I don’t know if it’s possible or if it will help.

But heave yourself in that direction. Turn yourself back toward love. Moment by brokenhearted, weepy, disinterested moment. As often as you can. Let love carry you.

How about you - How has your interest in life changed? Are there any glimmers of interest anywhere? If so, how do you follow them?” ~ Megan Devine

"Coming Around Again" Carly Simon

Carry on....

Many have heard me say so many positive things about hospice care, but it occurred to me that I have never really written about it.  I think I figured the longer most people did not know the details, the better off I would be….will not be the first time I have made a ridiculous assumption and fair warning…I am sure it will not be the last. But here is one of my new most favorite “ah-ha” discoveries.  As people you can divide us by gender, race, religion, hair color and this list can go on forever, but the reality is there are only 2 kinds of people…Alive ones and dead ones, and for the record, I am in the alive category and quite like it! The choice is not if we carry on, but how we chose to carry on.

Most of the time a friend or acquaintance will hear the word hospice, gasp, and assume I have one foot in the grave and death.  That’s a fair assumption.  In the beginning, is was what hospice was.  Allowing people to die and home with dignity, no tubes, no drama.  And they do still do that.

However, “palliative” care has been overlooked and the state of Florida discourages doctors from practicing palliative care except under the umbrella of hospice. Actually, I suspect this is more about the doctor’s liability and lawsuits for the insurance companies.  Palliative care does not try to cure what we all know is uncurable but helps us manage the symptoms and our other resources.

Palliative care is awesome.  The regular cardiologists were going to kill me and my savings account even with insurance with all of their chronic and quite frankly horribly invasive testing! Hospice care sends a nurse to me once a week (no more camping out in doctor’s waiting rooms and exam rooms for hours, my meds are mailed to me) they manage my symptoms ensuring that I have the best, most productive, painless life possible for me. 

There is no doubt in my mind that I would be unable to do one half of what I can do today without their help, guidance, and the constant changing and addition of symptom controlling meds.  But if I can leave one bit of wisdom with you, it would be… do not wait for the typical rule, which is waiting  for your doc to tell you there is only months or weeks to live before.  Hospice and palliative care can give you so so much more and I was so incredibly fortunate to meet with this man and spend a couple of hours with him before making any of my big decisions, I have never regretted it!

"Carry on" Croby, Stills, Nash, and Young

Who is in charge here?

This pretty much sums it up… ”The who is in charge here” dilemma is officially solved!  I woke up this morning with paws in my lower back and squished into one-quarter of the available width of a queen-sized bed and flipped back the covers.  “Not My Cat” has officially staked out his section of the bed.  We have had this “discussion” on several different occasions as I politely move him to the end or the other side of the bed.  He typically grouses but curls up and falls back to sleep.  This seems to be a new tactic.  Wait until I am good and asleep and then claim the territory unnoticeably inch by inch throughout the night. Cleary I am losing the battle.

                    "I'm a Loser"  The Beatles

Spoiler Alert....

This is going to be a long one, so sit back and get comfortable.  My dearest friend, Terry and I were talking, and although I was aware of the fact that I had just gotten another boost in the pain killers, I seemed to be a bit freer and gigglier than normal about talking about what my body was and was not doing as my organs begin to shut down.  The biggest and most hilarious part of the conversation had to deal with my intestinal track not operating correctly and the effect of egg salad has on that process, I will let you figure out the rest.  But the point I was making was this was not part of the fucking (excuse me) Heart failure comic book hand out (really, they are written like a comic book) they gave me one every single time I checked out of the hospital and I have many copies of the damn thing, believe me I know it by heart (no pun intended).  It has been a while since I have written in my blog, and Terry asked, “Why don’t you write about this?”  My answer was, I don’t know….who wants to read about egg salad farts?

Ya just got know you are headed for shit
when a black crow lands on your head.

It occurred to me that the one thing I have craved for the past few years was a tribe.  Not an artist or friend’s tribe although I loved them dearly because we share so many intimate and personal things, I need an "I am dying" tribe.  People that know the life, the love, and the fear of dying.  Now let me make myself clear, I am not looking for a “support” group, been to a few and they were full of whiners, whose main topic of conversation always centered around who had the biggest scar, the longest medicine list, the worst and the best cardiologist.  It was like a heart failure pecker contest!  Oh, there were a few knights in shining armor that were convinced they would fight this with diet, exercise, herbs, meditation etc. but they were only interested in showing all of us how much time and effort they were putting into not dying. Where are the people who accept what is happening to them?  The ones who are trying to live their best lives NOW, because that is what we have.  I want to be a part of the tribe that is not afraid to share the good, the bad, the philosophical, and the funny things that are happening to me on this journey.  In the beginning, I spent so much time and energy trying to convince everyone how “well” I was, regardless of how much energy it took.  When I could not do that anymore, I was ashamed. Certain that I brought this on myself and did not deserve any help or sympathy to combat the “monster” of my own creation I began stepping away from my own life.  Now it seems like it is time to tell the truth, the good the bad and the ugly, including the hysterically funny.  And please believe me there are some really funny things!  This will not be easy for me to write or you to read, but maybe, just maybe somewhere in my words, you might find a morsel of truth or comfort.  But then when this is all done and over with I promise you I will only be able to tell you the 2 things I know for sure...and I already know what they are now.

 

SPOILER ALERT:  #1 Nothing stays the same, EVERYTHING changes and 

#2 Everything dies.

"Iris"  The Goo Goo Dolls

Woodstock

I know it has been a while.....been a really rough couple of weeks, but I still needed to pay homage to my generation
and then marvel how much things change...they do still stay the same.

Then I was reminded by FB friend  

"We are stardust
We are golden
And we've got to get ourselves
Back to the garden"

"Woodstock"  Crosby Stills Nash and Young 

His death anniversary came and went......

His death anniversary came and went.  It was hard, but made a little easier with some medications.  It was a day of overwhelming grief and a day of equal and opposite memories and joy.  Most of the day spent alone in our space and part of the day spent with family.  It seemed only right and part of closing the circle the other people that were thrown into that horrible day (Darren & Jill) had a chance to spend some of that day together again.  The most profound thing that happened was the young man at work that Skip had developed more than a coworker relationship but a true mutual admiration, the young man that was with Skip as he died.  I have always been so grateful that Skip was not alone but with someone he knew and cared deeply about. This young man called yesterday to check on me, which was so sweet and kind, he confessed that he had a difficult time of dealing with the fact that he thought he should have been able to do something.  I had totally forgotten what a trauma that must have been for him, too.  I am so glad he could share that grief and healing that I had no idea had such an impact on him with me.  I did help continue the healing. And then….this beautiful bouquet of flowers arrived from my sisters.  It is a new day and a new year.

Auld Lang Syne.....

Brave enough to do the things I never thought I would have to...Damn it!

I had to increase my O2 through the night and it became intolerable to sleep with the noise and heat put out by “R2D2” …my name for the large O2 concentrator. I found on Amazon an O2 hose long enough that I could push that damn noisy O2 concentrator into Skip’s room with only the tubing in my room.  My mission was accomplished! Blissful, quiet, cool, sleep.  But on the second night of cool quiet sleep, I was rudely awoken in the middle of the night and quite frankly frightened by having the cannula jerked off of my face by an “unseen” force!  I have got to quit watching those ghost hunting shows!... It was not a ghost but Not My Cat in the hallway, wrestling with the O2 tubing on the floor like he had just discovered the best ever cat toy. A few Command Strip hooks later and some not so pretty but very effective engineering and I think the problem is solved!

Next week we will do handrails in the hall, a bit more bathroom modifications, and some adjustments in Skips room to accommodate a full-time care giver…if and when that becomes necessary.   The things that I have avoided for so long is now arriving…and although I hate it, it is not as bad as I thought it would be.

"Brave" Sarah Bareilles

Little by Little

It will soon be 1 year since I have been alone, and I still want to have all of these new changes feel right and normal, but many do not!  I am still “carving out a new life amid this weirdly devastated landscape” of widowhood, covid 19 and still working through advancing heart failure.  I am making so many mistakes!  New life still brings some of the crap of the old life. However, the overwhelming fear of the changes and reorganization of my hospice care has passed. I learned that I get to keep my primary nurse ED, who I adore and is a true advocate for me as a person rather than a set of diagnoses and symptoms and a new Doc that I met yesterday too, and I really like her…I am feeling very lucky about this!  So, if I could add anything to Megan’s quote it would be that “little by little pain and love and fear will find ways to coexist”.

"Nothing Stays the Same" Luke Singh

Learning, how to forgive me.

Learning, how to forgive me. The first thing is being honest with how I really feel.  Exposing myself, being vulnerable, and to quit being the “showman” pretending that I am much stronger than I really am.  It is not easy but if I want to really move forward, this journey of self-forgiveness has to begin.

"Shame on You" Indigo Girls

Our House is a very very fine house...

I found this picture with more cleaning.  When I tell people, this is the house that Skip and I built out of love and tears, good times and bad I also mean that we literally built it…well not the whole thing but the family room we built (everything but the trusses and roofing). It was such a struggle but we did it! We also built much of the furniture inside.  Then there is a good bunch of furniture that family heirlooms from booth my grandmother and his.  It is a little home where I am surrounded by memories and family, and it is all very good

….but I still miss him so very much and all we did together.


"Our House" Crosby, Stills, Nash & Young

no obvious end in sight...

Another holiday without you, and the day before that horrific the day brings back happy memories and tears. I remember all of the 4^th of July days on the sailboat anchored in Lake Monroe, the water balloon fights followed later by the kids squealing as the fireworks literally burst over our heads.

As I move forward without you there are mixed emotions between being proud of myself for existing and going on living and then terrible guilt for simply going forward without you. I still do not know how to reconcile these 2 feelings and I wonder if this will ever go away.

The love, the guilt, the happy memories, the profound loss still, swirl around in my heart with

no obvious end in sight.


"Summer Song"  Chad & Jeremy