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 disease, open heart surgery that was less than successful and more recently an S-ICD (internal cardiac defibrillator) implanted in my chest that will hopefully restore my heart beat in case of sudden cardiac death. I am here to celebrate my life, to uncover my fears, to hold on to love, to learn how to live a full life with heart failure, to honor my creativity, and to explore all of my emotions out loud ...before anyone can say
"Don't talk like that!"


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Thursday, July 27, 2017

Round and Round it goes....

Round and round it goes…and where it stops…everybody knows….for the most part!  Whatever ridiculous self-serving subject #45 chooses for that particular day or just about anything that he thinks will deflect attention or stop the current investigations into his family, campaign and financial entanglements with Russia.  We already know he out and out lies, turns on his own appointees even when they are doing their job (when it does not involve covering his ass) is a blatant misogynist, narcissistic, makes fun of and bullies anyone that does not do his bidding, wastes tons of our tax dollars on the golf course, does not understand how our government works, accuses others of anything to cover his own butt and the list goes on and on and on….We have got to make it stop!  Stand up, write your Senator and Representatives.  Communicate with your local politicians!  All of these people work for us!  They need to do their jobs, not ensure they get Republican and corporate donations and funding for the next election!
"Walk the Walk"  Eric Bibb

Wednesday, July 26, 2017

Please write Rubio and say NO to repealing Healthcare

I try hard not to allow politics to impact my daily life, although I do pay close attention now days.  Washington politics always impacted my pocketbook through tax law changes, but it has never been more important than now that I pay very close attention.  I am one of the 20+ million that without The American Health Care Act, I would not qualify for any health insurance at all, due to expensive pre-existing conditions.  Yes, it is not cheap, yes, the deductibles are high but we need to work together to figure out how to fix that.  Just DUMPING the entire program will be so damaging, detrimental and for some life threatening.  WE have to quit allowing OUR politicians, those we hired with our votes, to make their decisions based solely on their abilities to please the Republican Party so they qualify for more re-election funding or large private/corporate/lobby campaign donations.  Please join me in writing Senator Rubio of Florida urging to listen to his constituents vote accordingly.  Tell him to Vote NO on repealing our health care.  Write/E-mail Rubio tell him vote NO on Repeal healthcare

Tuesday, July 25, 2017

Stay-cation...a new concept for me...but a great one!

I have heard the word "stay-cation" for some time, but I never really thought about until just recently, as my travel wings have been clipped a bit.  It was worth a try and in the vacation capital of the world, it should not be hard to do.  It wasn't hard and so much more than expected!  It was great fun, relaxed and wonderful to be with family.  The guys played golf, we had a hysterical round of "Heads Up" that involved perhaps a few too many beers. (thank goodness the videos were not kept...blackmail material for sure). I lost all of my money at Texas Hold-em...clearly not my game, watched fireworks from my room for 3 consecutive nights, played with the kids had great food with my terrific family....it could not have been better! 

Saturday, July 22, 2017

how smart people do Disney!!







Disney was my first "real summer job" (1972....please do not do the math!) and then there were countless years of taking children and grandchildren to Disney World....I know how truly miserable it can be.  Disney maybe the world's happy place but not in the dead of Florida Summer! People are crammed in, hundreds and hundreds of "nap-less", cranky, over stimulated, fussy/crying children at 100 degrees and then there are the daily afternoon violent thunderstorms!  After all of this time.... I have finally figured out …. how smart people “do Disney”….From the 10 floor, in the air conditioning of a resort a mile or so away going “Ah there it is!  Close enough to see it… without all the heat and people and lines! I can see their wonderful fireworks every night with a glass of wine in my hand going “ooooooo-ahhhhhhh”.  In my opinion...This is the very best way to do Disney World.

I am on my first ever family “stay-cation”!  One of the few perks of living in Central Florida is that we do seem to be one of the most popular vacation spots in the world, so there were lots and lots of choices!  One family on the 15th floor another on the 6th and we are sandwiched in between them on the 10th  floor.  It is perfect!  We get to see each other as much as we want….or not.  Everyone has their own space, for family “game time” Darren and Jill have a suite, for fussy grands there is a quiet place to nap or just find some quiet time.  It just cannot get more perfect than this.  It is the most wonderful “stay-cation”!                                                                                   
"Don't Stop Till You Get Enough"  Micheal Jackson

Wednesday, July 19, 2017

The List....

What Most people do not know about me....

1. Despite my desperate desire not to burden anyone and to maintain my previous level of independence, the truth is I am failing at it. I need help and I am afraid to ask for it. (and I hate giving in and accepting it.  It is like letting heart failure win.) 

2. I feel like I have to pretend. I pretend to feel better than I do. I pretend to feel more optimistic, less afraid than I am. All this pretending is done for other people’s benefit, but sometimes it leaves me feeling more alone in the long run.

3. While I may not be managing this illness in the ways I should, it is the only way I know how. The cartoon pamphlet in the doctor’s office taught me how to be sick, NOT how to be well. I need a pamphlet on how to be normal, productive and happy while fighting a disease that I cannot beat. Fighting for normal is demanding, exhausting, hard work but it is worthwhile and I am willing!

4. Resting is fantastic when it’s an option, not when it’s a necessity. I hate missing out on the good stuff. I want desperately to be productive.

5. I envy and appreciate all of you.  I know it is not nice to envy others, but I do. I really really want my normal life back a life like you have!  But most of all I am really glad I still get to do life. And as much as I whine….I really do appreciate every moment.
"You Are the Only Thing in Your Way"  Cloud Cult

Monday, July 17, 2017

One...

These are not my words….but they were so wonderful…

The capacity to be alone…
Is the capacity to love.
It may look paradoxical to you, but it is not.  It is an existential truth:  only those people who are capable of being alone are capable of love, of sharing, of going into the deepest core of the other person—without possessing the other, without becoming dependent on the other, without reducing the other to a thing, and without becoming addicted to the other.  They allow the other absolute freedom because they know that if the other leaves, they will be as happy as they are now.  Their happiness cannot be taken by the other because it was not given by the other.

Osho, Being in Love….

"One"  Harry Nilsson

Sunday, July 16, 2017

Climbing the goddamn mountain.....


Well, that kind of hits the nail on the head!  Oh,
how I hope I have climbed the mountain!  I have done so many things in this life that I wanted to do, but never, not once did I think I was good enough to do them.  Every single one of them scared the shit out of me.  But…. I want to keep doing them.  Right or wrong I think the simple fact that just the doing them is unexpected and continues to scare me and on some level is enough to make them worth doing.  I am going to climb the goddamn mountain. What else do I have to do?


"Better off Now"  Trent Dobbs

Friday, July 14, 2017

"There is no reason not to..."

I know that must sound horrible to most…but there are some perks to being in this position!  Well, maybe not the “naked” part….believe me no one wants to see that!  The raw honest fact of life is, I am not the only one dying….we all are.  I know that must sound ugly of me….but there is some kind of really weird sense of cosmic satisfaction that I am not alone in this, however, I get the feeling most think I am. I remember being with a dying loved one, it never occurred to me that one day…. it would be me. I am not the first among the people I know that will have to do this but I will surely not be the last.  I do not think it is early or before my time, it will just be “my time” and the great part is that for the first time in my life….I truly have nothing to lose.
 "You Had Time"  Ani DiFranko

Thursday, July 13, 2017

another can of worms....



Learning how to live through failures and disappointments is another can of worms.

I always felt the best way to deal with a failure or disappointment was to put on my big girl panties, never show (or share) any emotion, learn the lesson and move on.  I am learning that divorcing my feelings from my failures may not have been a good thing.  Oh, I will admit that it looked good and you all think I am so strong, I do like that.  Sometimes there is no silver lining, convincing myself that these failures are “lessons” and should be seen as only that without any feelings have not always served me well. I need to learn how to take the time to grieve the loss, admit the mistake, feel the sorrow, and acknowledge the hurt in its simplest form.  For me, that means NOT making up a story that justifies the disappointment or my feelings.

I need to learn how to truly feel and allow the sorrow and grief to move through me without needing to blame someone or myself.  I want to take more and more and more control over how I feel, it is truly the only thing that is mine and mine alone.


 "Same Mistakes" Echo Friendly

Wednesday, July 12, 2017

HELP WANTED: a fairy godmother with a serious sense of humor!

Qualifications-
Graduate of “The Fairy Godmother               Academy” preferred but will                         consider drop-outs

Duties to include but not limited to-
Serious sense of humor, rolling on                the floor & snorting required.

Capable of listening to chronic                     whining for hours on end.

Must be prepared to put up with                   AND ENCOURAGE a litany of bad               habits.

Although glass slippers and pumpkin coach magic is not required, stopping or significantly altering pain, shortness of breath. stopping chronic tiredness (without any side effects) would get you the job for sure!.

Able to produce handsome Prince every now and again would be nice. (no questions asked!)

Light housekeeping will be expected. (oh who am I trying to fool…I am a slob!) change that to serious housekeeping.

Full time position with a pathetic salary!
"Help"  The Beatles