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!"


Music is loading really slow lately...sorry...

Tuesday, April 24, 2018

Not a good look for me....

As it turns out, the bathroom floor is not a good look for me. Not that I was ever planning to have to have that as a “look” but apparently Monday morning my heart and my body thought it was something I should experience.  Full on…. lights out… pass out!  The only thing worse would have been doing that buck naked! I was at least spared that indignity; I was at the sink starting to brush my teeth. Apparently, this kind of thing just happens every now and again to cardiac patients when blood pressure drops quickly and dramatically.  They really need to include this little bit of drama in the handbook under  “this could happen to you, if you have heart failure” for goodness sakes!  No one ever mentioned this as a possibility!  Not that it would make me more ready for it.  But Jeeze…. by the time Ed (the nurse) arrived which was in less than 10 minutes (thank God I do not have to do hospitals anymore, this would have been 2-3 day testing bonanza of testing for them).  I was still pasty and sweaty but my BP was on the rise, still 94/56 but incredibly low for me.  The biggest side effect seems to be I somehow messed up my knee, some swelling, and yeee-ouch-ness, but can walk. It is more like a sprain or a pull, either way,
it sucks…It all sucks!  Spent yesterday in bed legs elevated and off all high BP meds to encourage higher BP (that is a first for me)  and on O2, today I am allowed to return to an “edited” version of normal.  Whatever that turns out to be!
"I'm a Mess Righ Now"  Ed Sheran 

Sunday, April 22, 2018

I'm Fine

Fine has a new definition!  Recovering from a tummy virus or a head cold or a sore muscle or a host of other maladies shared a common theme.  I would get better, it would go away, I would recover, I would be fine!  Now those little life aggravations require I really really really have to holler back…

"Closer to Fine"  Indigo Girls

Friday, April 20, 2018

a gift, a reminder, a lesson...

Keeping my eyes open so beautiful little things about life can slip in without me working or begging for them.  The best gifts are never expected, they are surprises.  I was taught most of my life that life, jobs, friends, and good things would never come looking for me, I had to “beat the bushes” go out and look for them.  And to some extent that is right but it negated synchronicity and the opportunity for the universe to offer its unexpected gifts.  It placed the “I do not deserve” mentality in the center of how I thought.  When the universe “offers” answers I have to be able to recognize them. I have to have the strength and energy to open my heart and eyes enough to move toward those beautiful gifts….but I also have to recognize that as some of the things that comfort me and I have actively pursued begin to slip away,  it may be to make room for other important gifts to arrive.  I did not deserve this beautiful little wild iris in my backyard to arrive it just did without any effort on my part, a gift, a reminder, a lesson that all I had to do is open my eyes and see.
"Digging for Your Dreams"  Indigo Girls

Thursday, April 19, 2018


Will I ever get this right?  I am in the process of “minimalizing”.  And to be quite frank with you…it really is not minimalizing in the strictest definition, it is just getting rid of stuff I no longer use.  Decluttering is really a better word.  There has been a never-ending litany of  decisions and questions as I go through closets and cabinets….the one that comes to mind the most is “What was I thinking when I bought that?” ….and the item goes to the donate or pitch pile.  Then 2 weeks later as I rifle through the drawers or shelves looking for something I realize …ooops it no longer lives here. Well, I guess I did not really need that after all….My right to wrong ratio is about 50/50 and is about the same in life as it is in decluttering.  The end result I am looking for is to “let go” and live a simpler and freer life. I will admit it seems to be working. But I suspect that it will take some practicing and getting used to. It may be one of those things that will really be realized in the later....and that is ok too!
"Don't Give Up" Herbie Hancock, Pink, John Legend

Wednesday, April 18, 2018

My Magic!

Protecting who and what I am cannot be influenced by how others see my value.  It does not matter who it is….friends, family, religions, experts, or the medical insurance industry.  I cannot allow it to matter.  Protecting my magic, means I decide how to spend my time and energy.  It is now and always will be my choice.  There are now times that I have to let someone, that does not know me make a huge decision for me, and it is so difficult! My life has value….that is my magic and I will not allow them to take it from me regardless of their decision.

"She is Not Afraid"  New Direction

Tuesday, April 17, 2018

I cannot change them, the change has to be in me!

Today (and perhaps for a while) I may have to really really tune into my need to create.  I may need to figure out how to create a new life without the support of my hospice team.  The amazing group of people that have watched over me weekly.  The new insurance company is questioning my need, citing my lack of hospital admissions in the past year as being proof of being beyond their hospice criteria. WHAT????   This is where I would like to point out the outrageous flaw in this benchmark for hospice care!  Without hospice…mostly what I have is palliative care is exactly what has kept me out of the hospital…and I do hate hospitals!  Anyway, I have already cried, screamed punched my pillow.  But the reality is I can waste my time trying to fix or convince a company that has absolutely no interest in my health only in their financial obligations to the stockholders.  I may need to step up to the plate, get really creative and spend this energy I am wasting on being frightened and angry to open my heart and mind to figure out how to figure out how to move forward with my life.  It is not always fun…but I had no idea just how hard it was going to get.  The lesson has been…. there is nothing about the business of death that is any different from any other business. And the bottom line is my money vs. their money.  Life has nothing to do with it!  I am the only one that can create the life I love, and I cannot allow them to take it away from me....but I have to admit I am feeling overwhelmed!
"Look What You've Done"  Bread

Monday, April 16, 2018

My Birthday Promises to Me!

"Birthday" Beatles

Age does matter!

Some 21-year-old jerk made up  "Age only matters if you are a cheese"!  As long and as hard as I have tried to convince myself that age is just a frame of mind…there is indeed a point and time that my body has begun to speak much louder than my head…and my body is definitely winning.  But the battle is still raging.  I figure as long as I still “think” I can do it, that may be all I  need to do at this point!  Anyway….Happy Birthday to me! 

"When I'm 64"  The Beatles

Sunday, April 15, 2018

I Get Stronger....

There are so many things I wish I had done so much better!  I wish I had not cared about what people thought about me a long long time ago!  There would have been fewer days of beating myself up for not being good enough. But perhaps that was the re-direction that put me on the precise path I needed to be on. I am gaining the strength to not care about what others think now.  I have the courage to do whatever makes my heart sing (when this body allows).  I no longer care if it is right or wrong according to others…  all I need to feel is the right or wrong in my own heart and I cause no pain to myself or others.  For right now….I do not expect anyone to agree, nor do I ask anyone to.  Now I know,  I was never really rejected, it is part of my journey to learn the right and wrong of my own heart and as bizarre as it may sound to most…as my body fails….I get stronger!
"This is Me"  Kesha

Saturday, April 14, 2018

Holy CRAP… I did not do it!

Holy CRAP… I did not do it! 
Apparently, I hold the same degree of fear from the US Dept. of Justice as I do for the IRS.  In other words I do not do anything to rattle their cages, I hand everything in on time, I follow all of the rules (which you all know….is not my style) and have an overly healthy respect for anyone or any federal agency that could pretty much “f” up my life with so little effort.  So when I received an official notification from the US DOJ…I think my heart skipped at least 3 beats.  You would think by now, with all of the really scary stuff I have had to deal with in recent years, I would know the official universal instructions of  “How to deal with really scary stuff” by heart…. step one:  read first with non-emotional objectivity …then…adjust the panic level accordingly.  But NO... not this time… a big fat official letter from the US DOJ and I instantly go into a full-bore panic before even opening it, before reading the first word, or even while reading and after reading (because I was too damn panicked to clearly understand…what I was reading)!

I have groused miserably about the amount of business, bookkeeping and dogging insurance companies for NOT paying legitimate claims, filed in a timely manner, while I continue to get threatening collection letters from, labs, doctors, hospitals, etc…etc… (They just paid a claim from 2016.... my frustration is real!) I will confess that from time to time I may have been a bit militant in achieving my objective.  There might be a distinct possibility I could have said or done something that might be interpreted as borderline hysterically threatening…but I am not admitting to anything!   So….You can see that I did have a somewhat, however small, legitimate reason to panic!  I have always admired how a well-placed “hissy fit” can be a good thing and every once in a great while I would be successful…but never had I drawn the attention or examination from an attorney much less The US DOJ.

As my sheer panic abated,  it turned out…I am not the perpetrator (whew) but an official VICTIM listed in a Federal Court Case….WHAT?  Two employees of Florida Hospital have been charged and indicted by the Federal Government of selling official records of patients, and I am one of the victims  listed in the:  CRIMINAL DIVISION CASES…United States v. Tanganica Corbett & Kevin Weaver II…Court Docket No.: 6:18-cr-00035-RBD-GJK-1 (M.D. Florida)…Court Assigned: This case is assigned to Judge Roy B. Dalton, Jr., U.S. District Court for the Middle District of Florida, U.S. Courthouse, 401 West Central Blvd., FL 32801). 

I am still investigating how what and why I should do. I mean they have sent me pages of victim statement forms and I have no idea what if any losses I have suffered.  One would think that actually managing being sick while keeping up with the business of being sick… that there just could not possibly be anything else to deal with.  WRONG….and there are no self-help books or manuals for this! 

But just for the official record….It was not me, I did not do it…I am innocent…and, in the end, …that is all that matters!
"Respect"  Aretha Franklin

Confessions of a Closet Hoarder....Part II

And they have new homes…As the cleaning and organizing continues I feel lighter and freer as I see things I do not use any longer leave my home making space for new and wonderful experiences to happen. It was not like I was being crippled by or am not capable of functioning in a muddle… as an artist, I suspect it is another one of my superpowers
!  But I also notice TV hoarders” ever complained about how much stuff they had, they just kept stacking.  Yikes…The point is,  I did not expect this kitchen organizing overhaul to make such an impact on me personally and it has been a great wonderful freeing surprise! And here is another little “kind of sick” but control freak( Closet Hoarder) confession….If I wait until I have no choice of what happens to my stuff, then I get no input about who gets it…not that there is anyone clamoring to have my discards…but being able to give my unused dishes away to a group of semi-related kids (cannot figure out how this one works on the family tree) just starting their own independent lives has been such a great unexpected feeling of joy.   Another wonderful and unforeseen but magnificent confession of making life simpler!
"Wonderful Unknown" Ingrid Michealson

Friday, April 13, 2018

Are you a 6 or a 9?

Yep…I knew when I titled this, you would read it!  But I thought this was a wonderful thought provoking image.

Over the past couple of weeks of the “Cambridge Analytica/FaceBook” Congressional hearings, I have realized how many posts are incredibly one opinion or another with extremely suspicious origins, especially in regards to political issues.  I have decided to hide, delete, stop all posts that come without any personal comment or thought shared.  It seems that if the post was important enough to share then it should be important enough for the poster to expand, explain or share why they think this way.  Not just a request to share and repost to incite or goad..  It appears that is just how some divisive and ridiculous ideas are spread. I am always anxious to hear different points of view, but I would rather hear it from people I know and admire, not a meme that I have no idea who or where it came from.  I find now that many of the other posts, games, ads, pictures, and memes of unknown origin (in other words I am looking at the noted source) are being deleted too.  It is not that I have anything to hide or do not want to keep anyone “stealing” my personal info…If they find it interesting; I would be tickled to have them steal it. But…I do have control over my own Facebook experience and I would prefer that it be entertaining, funny, educational, uplifting, thought provoking and/or just plain good.  In this instance, I get to decide what is a six or a nine.
"Good Riddance"  OrtoPilot