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!"



Thursday, December 13, 2018

Unlearning and discovering!

Remembering who I was “before the world got its hands on me” just sounds like the most amazing place to be.  I am not certain I know exactly where that time in my life that may have been.  But I do remember times as a teenager that I had such energy, courage and dreams.  I recall the short spurts of time when the highs were so high, but the lows were horribly low, too.  Each time there were highs it was because I broke the rules, felt free and imagined how perfect the rest of my life could be if only the restrictions were off of me.  Perhaps that was a taste of “before the world got its hands on me”.  

Returning to me will be less about remembering and more about unlearning and discovering.... and this time…I will not let anyone or anything get its hands on me!

"Take you Higher" Sly and the Family Stone

Wednesday, December 12, 2018

a whole new meaning....

Every now and again a friend or acquaintance, one that does not know me well, will come across the newest  "snake oil"....cardiac meds or therapies they have tried or seen on the internet.
Everything from shooting electrical currents through me to ingesting hydrogen (h2) bubbles.  I appreciate that they want to help, but I have learned the hard way, that people with terminal illness (which by the way is all of us, no one gets out of here alive!) are scared to death of death. 

They….we….I….become desperate to the point of doing anything at any cost to avoid it…It has been my experience that they are all costly, emotionally painful and for the most part, the only thing they really accomplish is separating me from my money.  The end result will ultimately and always be death.  How much quality time can anyone buy? How much is it worth?  Although it is incredibly interesting to me…that the most religious believers of the perfect afterlife, the heaven that each religion defines as its own idea of perfection, are typically the ones that fight hardest to NOT go there.  Accepting death is just a part of life can be the most freeing thing any of us can do for ourselves.  Truly understanding that there may be “something somewhere incredible waiting to be known” takes on a whole new exciting meaning
"Closer to Fine" Indigo Girls

Tuesday, December 11, 2018


This has always been a “no-brainer” quote…it gets a little tricky when we are the ones that have to figure out what the word “participate” means.  This week I have learned that there is a whole new way of participation…It is NOT PARTICIPATING! Life has placed several choices in the past few days that I have had to make deliberate choices or take specific actions to do the “right” thing…but I am learning that the right thing and the thing that is better for me… may not always be the same.   And that is not what I was ever taught!!

It took thought, love, and tears to not participate.  I have learned that participating relentlessly might mean making the choice to NOT participate at all.  Actually, it is about recognizing circumstances that I have no control over, and understanding me wanting it to be different does not change the reality.  Learning to accept the things that I cannot change and hopefully I become changed for good.
"For Good"  from Wicked

Monday, December 10, 2018

my way of thinking....

We all have our ups and downs!  But there are some that seem to choose the downs, although I have no idea why.  I suspect we have all had times that the downs have come rolling over us and the act of preparing for them and protecting ourselves becomes automatic.  Maybe they are in a constant state of anger and fear…I am not certain, but it does break my own heart to watch some really choose to make themselves miserable because they have just forgotten how to be grateful or to see all the great gifts they have.
I was given the opportunity to get back in touch with an estranged family member through a friend.  I am sure I could have done that at any time, but it would have taken some effort on my part, and I have just not done it. It was just his overwhelming negativity that not only consumes him but that he seems to have chosen to live in and then expects others to remedy.  His life has a repeating history of devastating the lives of those that come into his orbit.  There is some part of me that would like to be back in touch with fond memories of the past, make peace and say goodbye.  Other parts of me are afraid I will be pulled into that destructive orbit and I am frightened I do not have the additional time and energy needed for that.  And so…it may be all about “my way of thinking”.
I am choosing a happy life and old fond memories.
"Galileo"  Indigo Girls

Saturday, December 8, 2018


In the late 90s the boys were on their own and the wonderful family holiday ritual marching from Christmas tree lot to Christmas tree lot choosing and then having a family vote on the perfect Christmas tree had fallen by the wayside.  We did what I suspect most old parents do, and that was to replace the yearly ritual with a small “fake” tree.  The boys were absolutely disgusted with me for following such a traditional ho-hum old people path…but in my own defense, it was easy!  It was that very first year of “fakeness” that I discovered although the tree was cute and easy…it had no smell.  There were a few years I tried to fake it with candles and sprays….and yukkkkkk! So when this gift of a live wreath appeared…I quickly decided not to do the expected and hang it outside on the front door…but to hang it inside and have this wonderful smell inside again this year!  Big SNIFF!!!!!  AUGHHHH…..
"It's Beginning to Look Like Christmas"  Michael Buble'

Friday, December 7, 2018

Filling these stockings!

Sounds so easy….NOT!  As long as we “tow the line” or do not “make waves” this is easy, but step outside the lines and look out.  They do not come right out and say it, ( I think it is because they think I am sick and dying) but I can see and feel the disapproval!  What I really need to do is figure out how to use this to my advantage…I could get away with all kinds of great stuff!   BWA-HA-HA-HA!  Look out!  I am going to have a great time filling these stockings!

"All the Right Moves" One Republic

Thursday, December 6, 2018

pesky side effects...

…and sick of being sick…although I have to say, this is really not like being the kind of sick I have always typically thought sick was.  Sick typically came on violently, I would feel like crap, could not do anything for several days, but then after some medical intervention or just time (as the illness would just run its natural course), it would get better.  This is different!  Yes, there is medical intervention but it never gets better, only not as bad, as fast…so basically I am just bitchy and sick of being sick…the underwear and responsibilities are just pesky side effects. 

I just have to continue to remind myself that as frustrating as this is, I am one of the very lucky ones. Severe or chronic pain is not a big part of this….for that, I am very grateful!
"How Can You Mend a Broken Heart"  Bee Gees

Wednesday, December 5, 2018

Scared the be-jesus out of me!

When you have a long-term chronic illness, typically big ugly symptoms do not just pop up… those buggars are much more insidious.  They creep up in small increments that are barely noticeable, then all of the sudden, they are evident and frustrating.  But yesterday….holy crap yesterday…while doing just some regular stuff I had a “MOTHER” of all… shortness of breath assaults…I could not breathe, simply leaning over to put away a basket of coat hangers in the bottom of my closet and boom. It was worse than any I have ever had, (or could have even imagined)  and of course, then there was sheer panic!...that never helps!  So I go into recovery mode….while I can…. “Hurry… O2 on…lay down….NO do NOT lay down…that made it worse…sit back up…try to take in slow deep breaths…not happening…nitro under the tongue…thoughts zooming through my head….is this it? Do I call someone, OMG can I even call someone. “ Panic is such an ugly thing….then I recognized the panic and tried to just calm down concentrate/meditate on my breathing… finally, I was getting air….Cannot tell you if it was the nitro, the meditation or the damn attack just ran its course…but it finally ended.

This morning when Ed came, my O2 is back to normal 99%...but apparently leaning over with that little bit of exertion set off what looks like is just another part of rather normal and expected heart failure crap.  I need to recognize the events that make this happen and then learn how to control that suspect activity….AUGHHHH!  Me and the word “control” that is never a good thing!
"What's Going On"  Marvin Gaye

Waiting is always the hardest part!

It feels like I have spent so much of my life “waiting”!  I know…I know …there are some things you just cannot rush….but then I think there are other times that I should have definitely NOT been patient, tolerant, or understanding…Maybe I should have stamped my foot, slammed the door, hollered louder to assert myself and make my point.
…and then along comes an evening like last night, where we anxiously waited with an excited little one for the arrival of Santa to drive by with a Firetruck…The “drive by” lasted a total of 5 seconds, and that is being generous, but when I think back…but the real joy was in the excitement of waiting.  There was so much joy in the anticipation.  That exquisite delight has always been available to me.  Perhaps the joy of anything may very well be directly related to waiting and anticipation I just need to be able to see it.
"Do You Beleive in Magic"  Lovin Spoonful

Tuesday, December 4, 2018

There are times that I stand up for myself…I am still desperately looking for the balance necessary to maintain my life and independence and not hurt people’s feelings that want to help.  I am not good at it yet…but I am working on it. Then there is the political thing and the religious thing, which for the most part in the past I would just knuckle under to preserve the peace.  What I know now is that every time I preserved the peace for others, I denied my own opinions and another little piece of me died or worse made me angry with myself for being so weak.  It ate up my self-esteem.  Keeping the peace of others has cost me dearly! But now there is something in the air and I need to love and take care of me…but it still sounds so selfish...
"Something in the Air"  Thunderclap Newman

Monday, December 3, 2018

willing to burn...

I spent so many years trying to be something I was not, conforming to all of the social rules.  When I failed, which I did on a very regular basis, I would be hurt and angry.  I did not understand that I always had a choice, I never had to “behave“ or do what they told me to do, of course, that does not now or ever give me the permission to deliberately hurt someone else, but it also means I do not give them the permission to hurt me either.  I was led to believe that if I was a good mother, good Christian, good wife, good homemaker that I would be happy.  It does not now….nor has it ever worked like that.  I felt guilty, not good enough, everything was my fault that what they told me did not work.  They were wrong…all I ever had to be was be the best I could be, make horrendous mistakes and say I am sorry, then start again.  I just needed to be me and not care what others thought! I wish I had been willing to burn much earlier in my life. If I could pass anything down…that would be it…be you….regardless of what they tell you… be willing to burn for what you love.
"Ooh La-La" (wish I knew what I know now....when I was younger)  Rod Stewart