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!"



Tuesday, April 30, 2019

Raw & Scratchy

Ok….” survivor” may not be the best portrayal of my current situation, but it works for me and I will proudly wear that label.  I related immediately to the opportunity to write and to “define my own reality” in this quote. The current reality is so different than anything I could have possibly imagined! Really, I never considered how I would die, how long would it take, would it hurt, how would my family and friends handle it.  Never once did I ask myself,  how would “I” handle it.  Most of my life has been wrapped around taking care of others, anything less than made me a bad mother, a bad wife, narcissistic and an ugly person.  Figuring this out for me is very strange.  I am really not looking for anyone to agree with me, understand me, feel sorry for me or help me through it.  I am just trying to figure out how to do this, for myself…out loud. It may sound selfish; it might make some feel uncomfortable and for that, I do apologize. I am doing the best I can, by the seat of my pants and it is raw and scratchy!

"Message to Myself"  Melissa Etheridge

Monday, April 29, 2019

"Protect whatever is left within..."

I have been accused all through my life of “not letting people in”.  I am not sure I really ever understood what that meant.  But I do understand this quote…  

I know and understand that there are family members, friends, doctors, and religion that I cannot afford to risk losing myself to.   And as I just proofread that sentence back to myself, I realize how silly it must sound to most of you.  It would have sounded silly to me several years ago, too!  Several years ago, when I felt so strong, I would let toxic people close to me but I was strong enough to firmly establish my wall.  My emotional defense wall is failing to protect me now.  I am finding weak spots and cracks in my walls and that scares me.  

Many have advised me to drop my walls, to be vulnerable, ask for help and be open.  I do, in my way, expose myself, by writing behind a “digital curtain” and paperback book covers.   But anything more...means risking my ability to hold on to me…to who I letting others in.  Others have no idea how difficult this is!  Not even those professionals that write the “self-help” books! They are psychologists, medical people, loved ones, that want to help....or sell books,  but not one of them really knows what this feels like.  They can only guess, they are not the ones dying!  We, the ones that are knowingly dying, none of us know how to articulate this!  I was never taught that death was an option, although we all know it is, we just will not talk about it!  I know, I know... I could be making a huge mistake. 

I do not want to feel needy and weak and right now more than ever I have to be me, be strong, I have to “protect whatever is left within”.
"You've Got to Hide Your Love Away"  The Beatles

Sunday, April 28, 2019

The Inner Warrior

The game changed this week…and I am still trying to figure out how to “snatch my power back”. That endeavor has ALWAYS ALWAYS been about MOVEMENT!   Getting up, trying something new, pushing past what I thought was possible and the biggest one….being afraid….. and doing it anyway!  The more, the bigger, the better!  Things are changing and although I want desperately “to do”….this body is speaking louder than my longings.  As I negotiate this latest decline, I have had to turn down 2 invitations that a couple of weeks ago I would have jumped at. 

Now my only choice is to wait patiently, watch and hope that soon, very soon that the “plateau” will arrive quickly and I can begin navigating my new normal. 

Anyone that knows me will know how difficult patience and waiting is for me!!!
Send in that inner warrior….QUICK!!!
"Strength, Courage & Wisdom"  Indie Arie

Wednesday, April 24, 2019


It occurred to me, that not only was I trying to live up to the “stories” of my past but that I find myself still listening to the stories of others and thinking I need to be a part of them, too.  Other people’s stories are just that, no more, no less… just stories.  They are someone else’s idea of who I am, how I should act and what I should do. Some are hurt that I do not fit in their story, others delighted that I am finally figuring this out.

 I confess I got a pretty great "default" story but it was by sheer luck! However, as I get closer to finishing it, I realize I want to finish this story by design…not sheer accident!

 "Thank You"  Alanis Morrisette

Tuesday, April 23, 2019

Do unto others...

It was just Easter Weekend, the holiest day of the Christian Religion.  I know, I used to think it was Christmas, too!  Christmas definitely got a better marketing program!  But Christianity is wrapped up in the miracle of the resurrection of the crucified Jesus. It is the foundation for the entire religion. I will not argue the validity of resurrection that is strictly a matter of faith.  You either believe or you do not, there are just as many reasons for as there are for against. But there is NO reason, religion, belief, or faith that should keep any of us from practicing one of the most important tenets of this religion and all others.  Do unto others...

"If You Could Read My Mind"  Gordon Lightfoot

Thursday, April 18, 2019

but there is a definite possibility!

I have always chalked it up to my gypsy DNA, never really considered this could have been “wine” induced…. but there is a definite possibility!

There are no words that can describe how wonderful and exciting my years on the art festival circuit were, nor did I truly appreciate them until they were gone.  I have really thought about “why” they were so great because they were fraught with some of the most difficult physical work at the most ungodly hours.  I always wondered if there was any amount of money that was worth it.  This work, for what I am certain that if I added up the materials involved would have paid less than minimum wage. But as I look back…I only remember the challenge, opportunity, the adventure and lots of wine sipping.

And even if my work did not sell there were many people that would tell me how much they liked and appreciated my work!  I was validated as an artist regularly with words and dollars.  Sometimes the words were more valuable than the cash.  But make no mistake…every weekend was about seeing and spending time surrounded by the phenomenal works of art created by other artists, making new friends and sipping wine…. lots of wine!
"Spill the Wine" Eric Burden and the Animals

Sunday, April 14, 2019

I miss my gypsy life!

Last night was an art opening and I ran into a couple of art friends I had not seen in years and years…and as all art conversations go, we began with “the last time I saw you…you were doing…”  And then a torrent of questions begin about how we did/survived the art show circuit and how they tried it and hated how much work was involved.  It was always hard and incredibly physical but somehow when you have a good show it is worth it!  And we had so many good shows, but that was because we rarely did anything in this area.  We learned early on to do the bigger shows (more possible patrons) and to do our “demographic” median income homework before submitting applications.  It made a huge difference and the hard work was always worth it!   I realized to be good at this, you truly need to be part gypsy and love the lifestyle, be ready and able to fix anything with rope, baling wire and/or duct tape.  Believe me, something will always break.  It was always a challenge and no one will ever really understand just how much I miss this life. Even with all of the blessings I still have and how hard I focus on gratitude, there are days that I would give anything to have my gypsy life back.  

"Gypsy Woman"  Brian Highland

Saturday, April 13, 2019

That is the hard part!

Not so sure it is the anger that is hard to let go of, I feel like I am really quite good at releasing my anger….but the emotional exhaustion, hurt and pain caused by feeling, recognizing and dealing with that anger in the first place that wears me out, before I ever have a chance to let it go.  Is there some way of not experiencing the anger at all?
That is the hard part!

"Let it Be"  The Beatles

Thursday, April 11, 2019

...but all of a sudden they are everywhere!

I do not intentionally collect angels but all of a sudden they are everywhere!  I can trace back the beginnings of this and many other of my own weirdness to my Mother.  Every Christmas she would include a wonderfully “tacky” angel as part of my gift.  I loved their irreverence so much that I kept them out all year and eventually they were incorporated into the “heart” mobile she made for me that hangs over my bed.  It just seemed appropriate that she, the angels and the hearts watch over me as I sleep. The other angels were gifts or I bought them and one I made.  As a card-carrying agnostic, I never intended to collect angels.  I do not ascribe to the religious existence of winged singing people that fly around making profound announcements.  However, I can wrap my heart around imaginary little beings that watch over me and spread smiles and love.  And the fact that they are all odd, unusual, and quirky makes them even more wonderful.  
"In the Arms of an Angel" Sarah McLachlan

YIKES! ... the angel post follows my swearing post...a little accidental ironic balance...

Wednesday, April 10, 2019

Swear wisely and with intention!

I remember the first time I swore…I was about 12 and I called Tommy Snyder a dumb ass!  He was trespassing on my favorite “kick the can” hiding place and would not get out!  I was so angry that it just came out of my mouth.  I expected a much more horrified reaction from him…but he just told me to shut up! I decided then and there it certainly did not get me the results I was looking for, and swearing was highly overrated and not worth getting punished over.

When my sons came home from the service, the Navy and the Air Force… I began to understand the saying “swore like a sailor”.  They were both horrible, and I became the language police! 

But then on occasion when I really wanted to make a point, I learned that a well placed swear word got the perfect attention I was looking for.  It was kind of like magic; the boys would literally stop what they were doing and cringe at the pure shock of that coming out of my mouth.  However, I need to warn you, if used too often it loses its shock value.  So... swear wisely and with intention…And I do!

Ah.....F#_k  It

Monday, April 8, 2019

I need some expiration dates!

Well, that is my stack of baggage!  I was mentally filing through them, trying to select the bag that held the most amount of my “damage” when I realized they all do!  How could I possibly pick just one or two of them?  In fact, I am still in awe of the theory (or fact) that we really can carry all of these negative feelings around all of our lives AND they continue to have such an effect on our behavior, even now!  Shouldn’t they have some kind of expiration date or just plain wear out after a while?  I mean, my head understands the who, where and why of most of my negative issues so I should be able to control them but somewhere inside of me those overwhelming feelings still exist and the buggars will erupt in the most unexpected ways and when least anticipated!  Is there a “totally unexpected” old shit suitcase?

"Unwritten" Natasha Bedingfield

Friday, April 5, 2019

I choose....

"Hold On I'm Coming"  Sam & Dave

The Medical System is broken!

I finally made it to Medicare!

Medicare is mine and the government's joint funded health care program that has 4 basic component health insurance parts.  I have paid into Medicare Part A my entire working life through years of my Medicare withholding income taxes and there is no cost to me at this time for that one (it has already been paid for).  There are 3 other parts with out of pocket costs.  They offer higher and more specific health coverage.  Pretty easy concept…. right????   But as typical government red tape, they can confuse the hooey out of even the simplest concepts but throw in a mysterious Managed Medicare “middle man” and insecurity and chaos take over!

All of the sudden there was a massive inundation of unsolicited sales phone calls, mailed advertisements (2 and 3 a day for months), even salespeople knocking at my door (ala fuller brush salesmen) to “help” me make the “right” Medicare choice (theirs of course).  Every major health insurance company and many I never heard of were aggressively pursuing me and my Medicare business. I had to stop and ask myself why?  Some of these were the same companies that canceled my coverage and turned me down because of a preexisting condition.  Chronic advertisement, TV, mail, salesmen’s commissions, and other sophisticated marketing programs are huge business expenses.  They all tell you their service “costs you little or nothing”!   Why are they putting the “full court press” on me (or any 65 yr old) unless there was significant profit to be made over and above these costly marketing expenses?

So…. who is paying for their services?  How do they get paid?  There is no such thing as “something for nothing” and my suspicions kicked in. WHY are these companies pursuing me so aggressively?
Here is what I learned…and it scares me!  These Medicare management companies have negotiated with large healthcare service providers at a significantly reduced price.   Hospitals, doctors, independent testing facilities, outpatient surgical centers, etc. etc.  have agreed to accept lower fees for services.  These healthcare facilities are depending on the increased volume of patients and tests that are submitted through these specific Medicare management providers to make up the financial difference.  It is “wholesale” healthcare! There is a great deal of money to be made from medical testing, necessary or not.  Guess who keeps the difference in the 2 numbers (the payment the testing facility, doctor, etc. etc. has agreed to accept and the amount of money Medicare has agreed to pay)?  The answer is NOT the doctors, not the hospitals, or testing facilities, here is another hint…it is not me or you either.  It is your Medicare management company.   If you are of an age…and all of the sudden your “Managed Medicare Doctor” is recommending many more medical tests and smaller procedures… more than you have ever had.  It is probably not your health and/or welfare that they are concerned about, but now you need to begin paying for their services.   This is how the managed Medicare company is getting paid…at your health expense.

When we ask and complain about the price of healthcare, it is the managed care companies and insurance companies “in the middle” between you and the actual medical diagnosis and health care that are all making a profit from our health issues.  And since medical tests have the least amount of medical-legal “liability” to both medical and managed care companies, they become a financial bonanza and you will be getting a lot more of those.   This is how you pay for your managed Medicare services. Can you believe they are more concerned about your health or is it their profit margins?  The system is broken!
"Doctor My Eyes"  Jackson Browne

Wednesday, April 3, 2019

And it really does happen…

And it really does happen…it just never sticks! 

There are times that I suspect I understand what it might feel like to be bipolar!  I wish these quotes would also make mention of the fact that this is a great feeling but do not be discouraged when it fades….and it will fade…but it will return… if that is what I want.  
It’s a roller coaster ride.  
It isn’t easy, not always good, but always worth it.  
But then what part of life isn’t?

"More o' That"  Eric Bibb

Monday, April 1, 2019

Norris inspects!

Finally…the new door…Still…. more touchup painting, but for the most part, we have finished! 

What we thought would be a 2-day project took 4 days.  Obviously, we think we are much better, faster, smarter and younger than we are!  But with age comes out and out stubborn tenacity! And as it turns out, that is not always a bad thing! (Ed does not always agree with me on that one but it is who and what I am so I am going with it!)  To actually watch the things you imagined come to fruition is the best drug!  But, there are still "pounds" (not kidding) of sawdust everywhere.  I wipe it a few hours, it settles again!

"It Don't Come Easy" George Harrison