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

Tuesday, July 11, 2017

Teach me to trust...




Teach me to trust my heart, my mind, my intuition, my inner knowing, the senses of my body, the blessings of my spirit.  Teach me to trust these things so that I may enter my sacred space and love beyond my fear and thus walk in balance with the passing of each glorious sun…..


When I do not feel well, my “go to” mode is to talk myself out of my own feelings.  I know how much of life exists in my mind and my attitude.  I have the power to make things worse or better based solely on how I decide to feel about it.  But when is it time to listen, trust and obey the needs of my own heart even when it is hard?


                                      "I'm Here, I'm Not Here"  Julia Stone

Monday, July 10, 2017

Reclaiming the pond garden....

It is so wonderful to have the sound of calming falling water back in my life!  The tall fountain was an indoor fountain given to me by one of my Artist’s Way Groups.  It stopped working years ago and regardless of my pathetic attempts to get it working again, I was unsuccessful. (But as I mentioned in a previous post…just could not get rid of it). The small copper frog bottom left in the pond was my outside fountain piece.  It was never built to function as a fountain.  I found him at one of my art shows and fell in love with his arm raised shooting a “peace” sign.  After speaking with the artist about what I wanted to do with him….he showed me how and where to drill holes to make him a fountain head….it worked beautifully. Both fountain pieces and parts are old and the copper in both of them has an outrageously wonderful green patina.  Unfortunately years ago, the hurricane came through and destroyed the covered pergola and fussy orchids that had happily lived under it finally succumbed.  I got sick, lost interest and eventually, my happy orchid pond garden became a big weed infested, unrecognizable,  forest with a hole full of water that served no other purpose other than breeding mosquitos.

I have had a few weeks of marvelous energy that I am attributing to a newly added med.  It may be all in my mind, but when these amazing little gifts of energy arrive I try very hard not to waste them!  Skip repaired the fence planks that came loose and helped with clearing away some of the weed.  I cleaned out the pond….GROSS… and we figured out how to rewire, reconfigure and reuse pieces and parts of the 2 old fountains, plus a new pump and “ta-dah” new fountain (kind of) …A few new plants and we are making progress. I still, have a long way to go, and I have to confess working outdoors in the heat is overwhelming at times, but I am truly loving reclaiming my old pond and garden.  (pic is kind of crappy, I shot through the back porch screen...Yikes!)
"Coming Around Again"  Carly Simon

Sunday, July 9, 2017

these stunning women......

5 out of 7 of the original VOG group (“Veins of Gold”, by Julia Cameron) got back together to spend a spectacular full moon evening with Tori, who was in town from Dubai…it was so great to see her and almost everyone from that group …plus a couple more!  I do not know how to specifically explain it, but being around creative women is always inspiring!  Once again, after much too long, the back porch was bathed in laughter, wine and candle light….oh my…. if that back porch could talk! I have had the wonderful honor of being in the company of other “not” artist women and I adore them but I have to say, creative women…are magnificently different!  

We can talk about ANYTHING! Politics, religion, art, family and the list goes on and on and on.  There is never any judgment or negativity….the support is unconditional.  Every opinion, every idea is met with the opportunity to learn something new, expand what I thought I already knew and in general it is a beautiful exercise in amazing open-mindedness!   Each idea that is different from what I think I believe is a chance to embrace a new point of view..to grow…to expand past my preconceived notions…hear about and embrace all diverse points of view from a different perspective without the fear of hurting someone’s feelings, making someone angry or not being accepted for having a different opinion.  This is truly one of the greatest gifts I have ever received!  Thank you, Universe for bringing these stunning women into my life!
"Dancing in the Moonlight"  King Harvest

Saturday, July 8, 2017

and.... I really did not expect that!

Another one of these “easily said” but..... I do love the sentiment! I am reminded every day that I am not getting out of here alive (but neither is anyone else!) …and before anyone says….”I am so sorry” DON’T! In some ways, it is a beautiful daily reminder to be in the moment!
This…whatever is going on at the time may never happen again…is life. I do not want to squander one moment. The every day little things become more precious and important to me. The big things like vacations and celebrations become the memories I get to make for others. OOOOPs…I take some of that back…The museums in NY were definitely for me! But the time has come to let go of the others opinions and embrace the silly, kind and weird of my every day!

I have lit the pretty decorative candles. I buy the “good” wine (not the stuff on sale at the grocery store) although in my defense, sometimes that IS the good wine. I use the “guest towels”. I sleep on the cool satiny soft "company" sheets. I pay for someone to mow the yard, so all I have to do is plant and tend to the flowers. I bought the pretty lacy panties, instead of the heavy duty cotton crotch "last a lifetime cast iron jobs" (that may have been a little TMI) and most of all I find myself saying NO to things I used to feel obligated to do a lot more.

I accept and spend my amazing energy on just the things that are important to me. But the real surprise is….I am amazed at how many things that I felt were daily chores, that I used to really hate doing, have become the glorious, strong, and beautiful stabilizing anchors for everyday life. They have somehow become my measuring stick of how my life is going and I cherish those chores more and more each day…In the kitchen.....I have even tried some recipes that have more than 3 ingredients!  I know… I know...please do not let that one get around, I do have a reputation to protect! It is the everyday little things that have become my big hidden treasures.  And.... I really did not expect that!
"Groovin"  War

Friday, July 7, 2017

just because.....I love fireworks!

yep...it is a video...give it a minute to load....it is worth it!


We were going to go on an Evans family cruise to Cuba...but...you know what Trump did and then Ed (my awesome hospice nurse) said: "I am not telling you not to go....but you will be technically out of the country, we cannot help you"....I heard that loud and clear....no further explanation needed. Although I was reminded that my last excursion to NY museums left me with lungs full of fluid and an ugly round of pneumonia.  So...we are going on a family "stay-cation"!  Living in the "resort capital of the world" does have some advantages!  We are going to the Grand Cypress Resort for a long weekend with ALL of the kids and the Grands...but not just that....I have made arrangements to have a room that faces Disney...and for 3 nights  I have front row...up high...seats to their fireworks....I can hardly wait....silly I know...but oh how much fun I will have!

nothing to lose....


Really!!! All these years of life, reading, writing, soul searching and introspection and Frank Zappa already had it all figured out….Frank Zappa?  Not Albert Einstein, Brene’ Brown, Socrates, Anne Lamott or Henry David Thoreau?  I really should have NOT listened to parents, teachers, priests, and  TV….  As a younger woman, I should have gotten into more trouble, be myself, and not care what anyone else thought. But I wanted so desperately to fit in, be good, be accepted and I was already punished so much for the smallest infraction that I was always scared.  I am still….always scared!  Scared to stand up for me, scared to speak out, scared of not being good enough, scared of being left out, scared of not being loved.  When you spend your entire life trying to fit in and embrace the unspoken but very established and mandatory qualifications of success it is very hard to let go!  Although historically we hold up and celebrate the rebels and the non-conformists of the arts, religion, politics, and science, we beat and punish our children into socially acceptable submission.  We are taught that the only aspiration needed for true success is to fit in and be what “they” expect. 

Now I am at a time when I just do not care anymore…I have nothing to lose…and maybe that is the secret…to truly be strong enough to not “fit in” and be myself, I must feel like I have absolutely nothing to lose. For lack of other things to call this part of my life…”nothing to lose” sounds right..  I really should be celebrating this as a marvelous new freedom! Although I suspect grieving all of the things I wanted to do but didn't, is a part of getting to that wonderful "nothing to lose"!
"In my Mind"  Amanda Palmer

Thursday, July 6, 2017

...and no one notices!

I have a confession…. 2 more bags tiptoed to the curb… I am somewhat of a hoarder… partly because I was an ART workaholic,  NOT a HOUSE workaholic.  I also blame some of it on my generation….we saved, fixed and passed down everything. But, now that I am home pretty much 24-7, I have been on a mission to get rid of anything we are not currently using.  Forty years in the same house has produced a bunch of outdated, broken (but might be fixable), doesn’t fit any more stuff. I have recently been really ruthless in my pitching and giving away of stuff and the house. My life does feel so much better as the clutter goes! (in the house anyway…the garage …..meh!)  Not everyone here is supportive of the new “simplify” life program I am on.  Even though “everyone” has no idea how much and where all of this stuff is!  Several months ago, while he was out of town I went through his drawers and pitched all of the excessively stained and ripped t-shirts and jeans that he was saving to work in around the house or paint in. (That in itself is a joke!) When he came home he did not even notice, but he did thank me for cleaning his room! BING!!!! The light bulb lit up over my head… I am on to something here!  I can avoid hours of arguing and negotiating by pitching small amounts at a time while he is not looking!  So every now and again, I randomly fill a garbage bag or 2 (or 4) and tippy toe out to the curb on garbage day or call Vietnam Vets (they pick up at the front door!) ….and no one notices!  shhhh…..
"Evil Ways"  Santana

Wednesday, July 5, 2017

He's baaaaack!



Oh, Thank you, Universe….My Ed is back!  I had to do 2 weeks with the “stand in” hospice nurses, while he was on vacation and I had no idea how much I adored him.  The other ones did the job ok….but not so much!  One was a day late, and one did not get my meds in on time and I spent the weekend halving the doses to make them last, figuring that half was better than none.  I did not plan on liking a male nurse, in fact, I really thought I would not like it at all, but he is amazing!  Not an alarmist, he is very calm and cool and he really works, coaches and keeps the meds at a level with me getting the best out of this life.  After the first 6 months with him,
I did not realize what a significant part of my life he has become and I am so happy that he is back!


"Baby, Now that I've Found You"  Foundations

damn "cutesy" quotes

Sometimes I just hate these damn “cutesy” quotes….just like saying them or believing them makes them so. But…. just in case and on the off chance they do work, I think this might be one on the top of my list! Notice that they do not say “do all of these things and you will be loved or famous or authentic or wealthy”. Although I suspect some might think the reason I post all of these things is that I am wise or have come to this truth through experience.  It does say that I could be that magical person.  Really?  Magic?  People have been considered “nuts”, medicated and put away for thinking they were magic.  Being myself is anything but magic and so much harder than these unrealistic quotes make it seem.  Perhaps I should not care what other people think, that is what I teach other creatives to do.  Am I a fraud?  Do I practice what I preach when I tell others, follow your heart, do what feels right and brings you joy and then I hide what hurts me?  I am told,” I do not let people in” that I do not share how I really feel.  And that has been happening since before I was sick.  I would let you in if I could, but I feel like I cannot risk it. I am fairly certain that most people could not endure the anger, the pain and the frustration I hide.  It is not that I do not love or trust others; I just do not have the strength to risk letting anyone too close because I could not bear to risk losing anyone or anything at this stage of my life.  I suspect you like the magical strong person that you think I am….not what I really am….but just in case I am wrong I will keep reading and trying to draw some life and wisdom from these “cutesy quotes”.
"They Know" Eric Bibb

Monday, July 3, 2017

but...it also bites me in the ass!

The crashes are the parts of me I want to share but are hardest to talk about or let people in when I’m experiencing them.  Some of it is because words cannot begin to express it, but also because it involves showing the unedited insecure parts of me.  It involves exposing my embarrassment, my shame…it involves being vulnerable. Lifting the veil of “I can do this” and asking for help is so hard. I am not good at being vulnerable and when it comes to my heart, I frequently squirm and change the subject or joke about it.  Part of me feels as though I have failed….. at life.

When writing here…. I might share a bit of my experience …but I never say as much as I need to, and rarely do I allow myself to be honest with you. I suspect, in some ways, it keeps me from being really honest with me, too. My heart failure happens in private and what I allow others to see is only part of me. The part of me that people see is the happy, smiling, in control me and it is still very much me, but it isn’t all of me. I have a mask I wear when I feel vulnerable and exposed. The mask is my lifeline when I am uncomfortable.
But it also bites me on the ass when I want to feel seen, heard and understood. 
"Strip Me" Natasha Bedenfield

Sunday, July 2, 2017

"a vibrant hope for the excitement of the unknown"

A little Sunday morning religion (or lack thereof). Every now and again someone who really means well, tells me they are praying for me. I smile and thank them but I am never really sure what that means. Does that mean they are praying for me to live longer, or live without pain, or maybe they are praying that when I die I am going to their idea of heaven?  For the most part, I admire their commitment to their faith, other times I am a bit frustrated that they feel that their religion will make me feel better.  The reality is that their faith...only makes them feel better and that is ok if it does.  To be perfectly honest, I am not sure what if any religion I am.  I know I am a believer in the Universe or some kind of undefinable spirituality and I do truly believe that love is now and always will be the unknowable answer. I only hope that that is the unknown that can only be known after death.  I see what I am living through now as just another part of life, a part that most of us are going to experience at some time.  And as far as what happens to me after I die…I do not know. All I can tell you for sure is that I do indeed have a gypsy soul and a vibrant hope for the excitement of the unknown...and I am good with this.  I cannot be afraid of what I do not know...I just hope, like everyone else that it is amazing!
"Closer to Fine" Indigo Girls