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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Saturday, December 30, 2017

the best of my spirit....

At the end of the year I try to take stock of what I have accomplished, was it important, did it matter. The answers always seem to be, not much, I don’t think so and I doubt it.  But are those my answers… or the answers I think other people would say.  When I look into my heart, I can say I have done so much and it mattered to me.  Perhaps that is all that should matter.  This year, one of my most important goals will be…only if it matters to me…I know that sounds selfish…but my art and my ideas and my feelings are the signs of my spirit, they will always be, even when I am gone.
"Where are You Going?"  Dave Matthews Band

Friday, December 29, 2017

Watching them grow!

Back row...Owen & Steven
Middle row… Stephanie, Jason & Oliver.
 & front and center the birthday boy, Cooper!

The Holidays are winding down,  but I love that we can stretch them out and yesterday the #1 son and family were out at Universal and we got to spend the evening with all of them…I am reminded what a lucky a woman I am, that I have such a wonderful family and am having the opportunity to watch them grow in love.  This may be one of the few times I say “phew” raising all of these boys is such work, but they manage that herd of boys like experts!   And, oh my how they grow so fast!  Oliver is as tall as I am now!  It was Cooper’s Birthday in addition to all of the Christmas unwrapping and celebrating, it was a party!  Dinner together at an I-drive buffet and watching them eat, they are all truly boys with hollow legs and there was a time that I thought having us there might put them out of business.  Look out Universal studios they are headed your way for the next couple of days!


"Its a Family Affair"  Sly and the Family Stone

Thursday, December 28, 2017

Me and Pillsbury are tight!

Ta-DUH….Birthday cupcakes for Cooper!  And yep…that is purple frosting!  So if you detect a hint of purple color on my lips, you will know that I was on “quality control” duty!  Wish I could take credit for all of this, but me and Pillsbury are tight! And I get excited when I get even a box cake mix to come out right and for those of you keeping track…it was precisely 3 ingredients!

"Birthday"  The Beatles

Moon Dancing!



Life spins and it looks like the universe is telling me it is going to be a most spectacular year.  A full moon on new years, and a blue moon later on with an eclipse!  How much louder could the universe be screaming at me?  So many wonderful possibilities happening to me and it is all wonderful!  Thank you, I am so very grateful! I will be moon dancing through this part of my life!!

"Moon Dance" Van Morrison

Wednesday, December 27, 2017

Ridiculous unrealistic expectations...

Ahhhh….this is the lesson I have yet to have gotten a full grasp on!  And it all flows back to my wretched expectations.  My expectations of what should happen and when….If I could let my expectations go…my patience would finally and completely expand.  Today’s mantra…..NO expectations…No expectations of what others should do,  feel, express…No expectations, No expectations. Do it for myself, do not expect help, do not expect anything but from myself and then everything that happens is always a wonderful surprise that I am grateful for…I want to live in gratitude, not hurt and anger because I had ridiculous unrealistic expectations!


"If it Makes You Happy"  Sheryl Crow

Tuesday, December 26, 2017

NO talking back!

Santa, Skip and Darren colluded on Christmas.  I was somewhat ignorant about hickeys that I unwrapped on Christmas morning were,  "Alexa" and echo and dots but I can see that they may be incredibly helpful for me now and down the road.  I am really excited to see and learn all they can do and how they work.  In the meantime,  while waiting for the installation to happen, and I may even take a shot at it myself if I really get bored and brave today I am truly excited, to be able to talk to my house…..just as long as it does not sarcastically “talk back”!


"Changes"  David Bowie

Monday, December 25, 2017

Could life possibly be any better than this?

Harper Christmas morning 2017

Enchilada Eve with my Dad & Trish, brothers, sisters, nieces nephews, wives, girlfriends was spectacular, it could not have been any more perfect!  Then Santa, toys and Christmas brunch with Jill, Darren and Harper this morning and Christmas Celebrating (and Cooper’s Birthday)  with Stephanie, Jason and all of the boys, Oliver, Owen, Steven and Cooper a little later this week when they come to go to Universal.  Now I ask you….Could life possibly be any better than this?


Morning Girl" The Neon Philharmonic

Sunday, December 24, 2017

Enchilada Eve! Woo-Hoo!!



Oh how I love Enchilada Eve….and I suspect this one will be more amazing than any of the ones in the past.  I cannot wait!


"I'll be Home for Christmas"  Michael Buble'

Saturday, December 23, 2017

The "Not My Cat" Doppelganger!




Not My Cat #2….???? Caught him in the act! “Not My Cat” has a doppelganger! Several months ago a gray kitty figured out how to use the official Evan’s cat (Norris) cat door. He began letting himself in and eventually inserted himself into our family. He was a bit on the goofy side and fit into the family perfectly but his name never changed and his official name became “Not My Cat” by default. This morning I caught proof that his weirdness continues because there is now officially a “Not My Cat” Doppelganger that is coming in through the cat doors! I wonder if they know they look alike?


"Do it Again"  Doobie  Brothers

I am so excited…I made a hat!

I just finished the official Enchilada Eve hat!  Enchilada Eve has never had it’s own hat…But maybe it was time!  It might help if you understood Enchilada Eve a little better.  It is not an official holiday anywhere but the Evan’s.  It began one day the week before x-mas when making out that week’s grocery list.  The Holiday season, to this point, had been heavy with ham and turkey and all of the traditional foods. The thought of making one more holiday meal of turkey and ham was more than I could stand!  My sister reminded me that she had promised to make Skip enchiladas (his favorite) for a birthday meal back in May…but we were never able to settle on a day where everyone was available.  And Enchilada Eve was born from a belated birthday dinner and a seasonal revulsion of traditional holiday food.  The irreverent underside of Enchilada Eve has always been about including our family and anyone that might find themselves alone or lonely on Christmas Eve. After 17 years it is going viral and has infiltrated the Jones-Bouis-Scott Families.  I am so excited…I made an Enchilada Eve hat!
"Feliz Navidad"  Jose Feliciano

Friday, December 22, 2017

touch the heart to move the mind....

or vice versa….
I have to continue to keep my mind in a good place and I know that my heart follows closely behind.  Some how...some way the heart and the brain are closely connected.  They can and do influence each other....but do not ask anyone in the medical profession how it is done.  They will not know.   Just give it a try. However, you make it happen, however, you bring that joy into your life...just do it! 

Nothing, no pills, no friends, no family makes life any better than what we can do for ourselves.  Whether it is family, singing, dancing, loving, enjoying, or wildly celebrating life any way you dare to...Make it happen for yourself!   I ask you….With all of this in life....How much more fun could it possibly be?


"Counting Stars"  Gardnier Sisters

Thursday, December 21, 2017

These are the days......

Today is one of the days I have dreaded for a long time.  For me, it has been the red flag that I am loosing.  Tomorrow I begin taking medication to control pain.  I have fought so hard not to start, but the kidneys and the back pressure have gotten so difficult to deal with.  Starting with the lowest available …I have been promised after a day or two, my body adjusts that my life can go on as before but without the pain and oh how I do want those days back…The one thing I have been so grateful for is the very small amounts of pain that come with heart failure.  I wanted that to go on forever, but I am grateful that I have the machines and the meds that are making this as easy as it is.  These are the days I need more than ever to hang on to gratefulness.
"Jagged Little Pills"  Alanis Morrisette

Wednesday, December 20, 2017

Recognizing Naughty!

I really should get paid for this and several other amazing talents I have that are truly underappreciated, things like feeling sorry for myself, making a mess, saying inappropriate things.  If I were paid for any of these things I would quite likely be a millionaire by now!  I guess the serious point of this post is who decides what is naughty?  Is it like breaking one of the big 10…or is it more like breaking the law, you know speeding or making an
illegal turn…and who knew that naughty has a whole new meaning in the “adult” stores!   Actually, I do not think it really matters…I suspect we are ALL... already on the naughty list!  You cannot fool me! 

"Born to be Wild"  Steppenwolf

Tuesday, December 19, 2017

Cuss Words & Courage


And still… I think I need to be sugar make everyone happy, do not rock the boat, smile even when you don’t feel like it and for heaven’s sake stand up straight and suck in your tummy!  I am always thrilled that generations after me will not have so much of this crap stuffed into their lives. Each subsequent generation appears ti lets go of more and more but there seems to still be a long way to go. It has definitely begun and it is a good thing!  I do not mind one little bit if someone thinks I am full of cuss words as long as I have the courage to back them up!


"She's a Lady"  Tom Jones

Monday, December 18, 2017

Damn Garbage Bags!

I would like to explain something before I begin.  First of all, I have a tiny galley kitchen (aka as the one ass kitchen)  and what I call a pantry is nothing more than a 10 inch deep closet with shelves and I have 2 of them in this kitchen…one for food one for garbage, cleaning supplies, brooms, and mops.  I call them both pantries although technically they barely qualify!

So Monday’s are garbage day.  Every Monday and Thursday Skip takes the garbage out and I put a fresh bag in the can…in the “garbage pantry”.  I have had my coffee, am fully awake and I walk into the kitchen to do what I do EVERY Monday and Thursday…I then proceed to walk back to the food pantry and stare at the contents for a good 5 minutes and frustratingly ask myself what the hell am I doing here?  It took 5 full minutes for me to realize I was standing in front of the wrong pantry…. Damn Garbage bags!
     "In My Mind" Amanda Palmer

Saturday, December 16, 2017

Fa-la-la-la-la



The tree is up...the lights are hung (thank you, Lindsay Lynch, you are the bomb) and the reindeer is ready for the presents to arrive... "tis the season"....


"Chrismas Time is Here"  Daniela  Andrade

Friday, December 15, 2017

I may need to re-think....



I may need to re-think my X-mas gift making when they require not only instructions on how to use them, but an explanation to as to what the damn thing is!

Fa-la-la-la-la

"It's Beginning to Look Like Christmas"  Micheal Buble'

Thursday, December 14, 2017

Just last week or forever ago...


It is so hard to imagine how this much time has literally slipped away.  Seems like this was just last week or forever ago.
 
"Coming Around Again"  Carly Simon

Wednesday, December 13, 2017

I still can be!



What a spectacular honor this was! To be nominated and recognized as one of the top 20 Art Mentors in the US by Professional Artist magazine.  And how marvelous to have the opportunity to relive the experience again today.  It is a great reminder of what I was and what I still can be!
And I am dancing while no one is watching!

"A Beautiful Day"  Indie Arie

Tuesday, December 12, 2017

What I think it should be vs…what it is…

So I had grand plans!  I would get home from the art show not even try to unload the van, until Monday eve...Giving myself some down time before tackling that job. But on Monday I could unload some of the smaller things, then I would get out all of the Christmas decorations and get the tree up, make a quick run to the corner store….out of cat food and toilet paper (yikes) and be back before the oxygen delivery, figure out how to plug in and start up the replacement set-top box from the cable company.  This, I thought….was reasonable…
Oh hell NO…

What really happened is I was in PJ’s until 2 PM…got the Christmas stuff out of storage (nothing is up), ran to the store and managed to miss my O2 delivery and it took 45 minutes on the phone with the cable company to get this crappy cable box to work.  Century Link is so on my shit list! .....Then I gave up...went back to bed….Tuesday is another day!

             
"Chain of Fools"  Aretha

Monday, December 11, 2017

I have the evidence!



"I did it!!!"  After years of doctors telling me, I really "shouldn't" do any more art shows for fear that all of the packing, unpacking, lifting, tent building, art hanging and other physical parts of it would be too much for me to do.  Hospice/palliative care is different...if it is important for me to do something...they encourage me and make certain I  have the right things to do it.  So, although this past weekend it would have been nice to sell more, it was not about selling...it was about me reclaiming a part of myself that I loved and I have truly missed.  To be around other creatives, artists, and music, to see my work all together hanging in one place, not just stacked and packed away and to have people see, admire and even purchase what I have done....it feels so good, it is like magic! Although I will confess, I was and am still exhausted, have horrible aching muscles and a plethora of minor gripes and groans,  I am so gloriously happy that I do!They are all wonderful evidence of...I did it!  


"I Just Want to be Brave"  Sarah Bareilles

Friday, December 8, 2017

I need a lot more of this...







Slow and steady gets it done! It has been such a long time since we have been "on the streets" or in this case in the vineyard that our brains and our backs were challenged....but the tent is up...the art is in on the cart, still to be hung...but...WE ARE DOING IT!...and I have never been so happy to be this "good" tired!


"More o That"  Eric Bibb

Thursday, December 7, 2017

Good to go! Good to go!




Ed (the nurse) just checked me out and I have been pronounced good to go...with some finger wagging and warnings...but BP has responded to additional meds....lungs clear enough (just a little fluid), heart is strong and consistent, all systems are go....I am so excited! 

"Bang-Bang"

Wednesday, December 6, 2017

I may be addicted....

The last 24 hours have been eye-opening.   No internet/cable service…  I am not new to this dilemma, and I thought I was better at negotiating their “system” ...NOT SO MUCH!  After 1 hour and 37 minutes…I know because my phone said so….The light finally came on…they …the suspiciously non-English speaking tech support people are reading a  script word for word and have no idea what I have asked or what they are saying.  Finally, it was officially determined that my internet was down…please do not forget I had told them that 1 hour and 37 minutes before and I now officially qualified for the supreme honor of having the holiest of all…the repairman come out to repair THEIR broken equipment…..GRRRRRR…. This morning at 10:30 AM there was a wonderful repairman that found my problem was in a broken line at the end of the street!  The last 24 hours without internet or TV or access to my printer have been harrowing but it was significantly compounded by having to deal with tech support.  But after it is all said and done….I have to confess that  I may be addicted to my internet/cable if I am willing to stay on the phone for 1 hour and 37 minutes talking to someone that does not speak English just to get my service back! 
"Help"  The Beatles

Tuesday, December 5, 2017

Celebrating my Life!

So here is the thing…This is not the kind of “art show” that  I have done in the past but yes I will be surrounded by amazingly creative people.  It is (I am sure) going to be focused on wine, music then chocolate, then art…and I am not even sure about using the word art…I suspect it is going to be more about the Christmas gift craft… and that will be quite different for me.  But the most important thing for me is to just “do it”!  I am looking forward to spending the time outdoors, sipping wine, listening to music, surrounded by my art overlooking a vineyard!  I have pushed my body, groused and sworn more the past few weeks than I have in 5 years and I have loved and celebrated every single moment of creating, framing, packing and I am certain the rest of this experience will be just as fun!  I spent so many years in this lifestyle, but sometimes I forgot to have fun enjoying the challenges as much as the successes.  I always enjoyed it, but I am not certain I really celebrated and appreciated how wonderful this life really was….is!
"I Just Want to Celebrate"  Rare Earth

Monday, December 4, 2017

Not now...Not now...

Packing up my art for an art show!  What I used to be able to do in a matter of hours, now takes me days…but I can still do it! The hardest parts of heart failure are not the symptoms or the drug side effects.  The hardest parts are the internal battles between wanting help but thinking I shouldn’t need it, between knowing it’s out of my control and shaming myself for not controlling it.

The worst symptom of heart failure is guilt.

I know I overdo it and “tough it out” to avoid being that burden. It is the choice I make. To a certain extent. I am learning how to schedule and arrange life so I can continue to keep doing it by myself. I understand that the only person I’m burdening is me but I would like everyone to understand that I want and need to do this alone.  When I do have good days…and I do have them…I want to accomplish as much as I can because I do not know when I will get another one! I need to do it by myself while I can. I like doing it alone and I will know when I cannot do it anymore....but not now....not now!
"The Life I Know"  India Arie

Sunday, December 3, 2017

never ever never quit!


I have to keep doing what I was put here to do.  Yes… I am scared but I am also excited.  This is who and what I am and if and when I have to quit, then it will be time for me to go. I will never ever never quit!

"Heart of a Hero"  Cathy Heller

Saturday, December 2, 2017

worthy....






Confused, broken, frustrated and sad is hard to do…. but there are some good things that come from them.  I am not saying that I am brave or authentic from these experiences but I am learning to be what I am right now, not hiding and trying so hard to be worthy!


"Candles in the Rain" (Lay Down) Melanie

Friday, December 1, 2017

Creativity slips out....

Packing and transporting art is one of the many old/new challenges I have faced the last few weeks!  Down to one stack of cardboard corners and the last roll of stretch wrap meant I would have to order more.  It was worth the investment but neither of these 2 things comes in anything other than FULL CASES and that investment would be significant.  It was never a problem, back in the day, with all of the packing, traveling and selling I did. In addition to the packing protection of the corners and stretch wrap,  I would always wrap a sold piece for buyers to get the piece home safely.  But now…not sure if this Lakeridge Winery is a beginning or an end and it is hard to justify that kind of expense without knowing. So cutting dollar pool noodles (6 filled a bag) into short lengths and splitting them so they will clamp on the frame has become an awesome way to solve this problem!  

This was a needed victory…this week there was a wicked angina episode and the BP is back up in ugly ranges…meds have been added to handle the new/old problem.  I suspect …. Creativity slipped out of my studio.  But I also think that there is magic in my creativity that can slip into my heart, too!

"Chumbawamba" I Get Knocked Down, but I get up again!