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!"


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Sunday, June 16, 2019

The more you love who and what you are....

As I continue through this process, this is the first most amazing set of feelings and emotions that I truly recognize!  I have known pretty much from the beginning, illness and death is a solitary activity.  As much as friends and family want to, they cannot share in the pain, fear, and grief that I go through.  It is not a fault, it is a fact and maybe, in the end, a blessing.  My heart and my body may be getting weaker but the emotional struggle is making me a more powerful source of strength. I no longer need attention, validation or approval from anyone, I am learning how to do that for myself. I control my own peace and it gets better every day.


"It's Amazing" Jem

Friday, June 14, 2019

Remembering Carter

Happy Birthday friend, student,  teacher, one of our creative tribe and the only woman that made me laugh so hard that I wet my pants. There are no words that can tell you how much you have been and will be missed! xoxox

Thursday, June 13, 2019

Nice ?


My entire life being “nice” was the first thing I was taught to be…if I wanted to be liked and/or loved and  I wanted that desperately, I suspect most of us do! My mother walked out of my life when I was 5, in a young child’s mind I had clearly done something terribly wrong! The only way to atone for this was to be nicer.  Honoring myself, having boundaries, being authentic about my life and feelings was NEVER a part of this equation! 

Recently, after several years of masking my own discomfort and struggles so my loved ones were not uncomfortable and saw me as “nice” and well and in no need of their concern, I am at the stage where I can no longer keep up the performance. Forced (and I am a redhead, force
does not go easily) into a space of self-care I cannot guarantee that being nice has happened, but being motivated by love for myself, my own heart is forcing a whole new perspective on how I live and love.

"What I Am"  Eddie Brickel

Wednesday, June 12, 2019

A perverted version of the “Wizard of Oz”

Prepare for serious GROUSING:
45+ years ago, we got a marriage license. This does not make much sense now…but believe me, it will!

In 1974 we lived and went to an Episcopalian church where we were going to get married, in Orange County. At the last minute, the priest we were receiving (pre-marriage)  Cana Classes from informed us that the Bishop’s dissolution of Skip’s first marriage was likely to be declined. In other words, the church did not feel his legal Texas divorce was valid under Episcopalian rules. The wedding I dreamed of in the Episcopalian church that I loved and grew up in, was going to be denied. However, he had a minister-friend, at a Presbyterian Church in Altamonte Springs that performed weddings for couples like us…and we did just that. If I could… I would track down that pompous Episcopalian Bishop to show him how wrong he was. I have never truly forgiven him or the church…

Fast forward to last week, while filing for Skip’s Social Security Retirement and Part B Medicare and, by the way, surviving a SS fraud scheme, we had to produce 2 more pieces of documentation to finish the process. A statement from his employer that he was indeed covered under a company health insurance, to avoid penalties for not signing up for part B during the regular enrollment period and….a certified copy of our marriage license. I insisted, that surely a certified copy of our marriage license was unnecessary since they already had 45 + years of filing and paying taxes as Married Filing Jointly on the computer in front of him. That should certainly be enough evidence of marriage! My sound reasoning fell on deaf ears! What was I thinking? This is the US government where red tape and confounding bureaucracy is the motto! We were advised, not to worry, it was easy…."go back to the county where we were married and request a certified copy at the courthouse". Back to the beginning of the story….we were married by the minister-friend of the Episcopalian priest, at St. Marks Presbyterian Church, Altamonte Springs, Seminole County. (I bet some of you have already figured out the problem that is about to occur, unfortunately, we did not!)

Seminole county said we would have to go in person to the archived records building, in a warehouse district in Sanford, out close to the airport (45 years was too long for their typical records department at the courthouse, nor were they able to confirm by phone, our records were there) …and so we followed instructions and went in person. The woman behind the desk, who looked suspiciously like a “Munchkin” and was surrounded by more than a dozen plus stuffed animals tucked in every corner of her cubicle along with miscellaneous pet rocks, opened up a drawer and pulled out a microfilm cassette marked 1974 and plugged it into a viewer. After a thorough 2-minute search announced that our marriage was not registered in Seminole County. WTF!!!! Simultaneously our brains go into overload, smoke erupting from our ears trying to figure out why our marriage was not registered when the eccentric micro-film Munchkin asked was it possible the marriage license was APPLIED for in a different county. It is NOT the county we were married in…it is the county where the marriage license was applied for..

An hour later we arrived at the huge downtown courthouse where there is no available parking within blocks, no available handicap parking anywhere and I swear, from a distance that building could be a dead ringer for the Emerald City if it were green. To make matters worse, neither of us got through the metal detector on the first pass. He for a pocket knife and I for a metal fingernail file and the defibrillator implant. Finally, through the metal detector and a courthouse pat down, we found the records office and after a short computer search by a records secretary…. there it was, our original marriage license, in the Orange County archived files!

It feels like we have been in some perverted version of the “Wizard of Oz” today. We have been in the land of Munchkins, down the yellow brick road, survived the “flying monkey" metal detector, and thrown water on the Wicked Witch of the West. She has melted, and we have the BROOM (or certified marriage license) the wizard has demanded! Now…it is back off to the Social Security office aka “the Wizard of Oz” tomorrow with our “certified marriage evidence”

…but I remember what happened in the movie! If there is a hot air balloon in front of that Social Security office….I quit!
"We're Off to See the Wizard"

Monday, June 10, 2019

BUT….What if the circus keeps coming to me


Yes BUT….What if the circus keeps coming to me???  It has felt like the proverbial “Big Top” parked in my front yard recently! Going to the circus has not been a choice.  However, learning which “acts” to participate in and which ones to walk past has been an eye-opening experience.

I have found that the moment the clowns (drama, illness, confusion, chaos, turmoil) begin, I just need to stop for a moment, NO immediate reaction required unless you are standing in traffic!  A deep breath and a few very simple questions to myself….What am I trying to accomplish here?… How do I want this to end?… What makes the most sense?  

The first thing is to identify and clarify specifically and simply what I need in this situation.  It is really nothing more than small short-term goal setting.  I cannot allow any emotions at this point, they only tend to confuse and redirect right now.  I need to determine who, what words or which actions will move me closer to what I need to accomplish? Regardless of the situation, getting emotionally hurt, angry or making everyone happy rarely moves anything forward, in fact, I think it does the opposite, expending great deals of my own energy while accomplishing nothing.  I do not want anyone to think I am a focused robot, but what I do know is that there will be plenty of time to cry, lament, laugh etc. etc. afterward. 

Although I have a less than typical goal-oriented life, using the Daniel LaPorte’s goal techniques of “Desire Mapping” and core desire feelings I will admit there are some immediate situations that require the more traditional goals.  So…bring on the circus….I can do this!

"The Tears of a Clown"  Smokey Robinson

Sunday, June 9, 2019

RED FLAG...RED FLAG


I fancy myself as fairly internet savvy!  But I may now be technically classified as a gullible old fart!  I know there are “bad” people out there!  I am very cautious! I have up to date security software on my phone and laptop. I check my bank accounts daily (actually I subscribe to a daily activity email). I only use a credit card or PayPal when purchasing online …gives me a chance to dispute charges and get my money back. But for all that I thought I was doing right…this one caught me way “off guard”!

Clicking on a link on the official Social Security Association Website, “redirected” me to a site that was not SSA, but it looked exactly the same. Then I made an appointment to meet with a SS counselor for some specific filing SS guidance and advice. We were to meet 2 days later via a very official but off-site email scheduling program, at the Library meeting room a couple of blocks away from the Official SS office…First RED FLAG and I missed it.  When we got to the library, there was no SSA counselor, the library staff had never heard of such a thing….RED FLAG is now waving vigorously.  The SS office was just a few blocks away, we opted to go straight there to figure out what was going on.
 
They were aghast! We were horrified! The next 3 hours my phone (with all of the pertinent contact info from the nefarious site were located) was examined by the SS office.  Scrolling back through the SS office noticed the official website address had changed from SocialSecruityAdministration.gov to  SocialSecruityAdministration.US.  Now that RED FLAG is flapping wildly and I finally get it….We have been caught up in a scam to get our SS numbers.  The wonderful and very helpful people at the Official SS office were proactive, awesome and reported to SSA FRAUD and FTC through their offices… but instructed us to follow up with second personal reports when we got home.  We also needed to freeze our credit on all 3 bureaus.  It was a full day of “undoing”.  Even though the guy did not show up, and it does not appear that the scam was successful, we were instructed to take every precaution!

I suspect I may now be truly qualified as an official gullible old fart!
"What a Fool Believes"  Doobie Brothers

Friday, June 7, 2019

Patience and pine needles!


Bending over to pull out the pine needles out of the new pond makes me so light headed!  The fear of falling over and drowning in an 18” deep glorified puddle is NOT how I want to leave this world! Coming up with creative tools have filled a good part of my time!  Zip ties and pool noodles are the most amazing things!

In the real world, I have spent a lifetime with the mantra, “you cannot stop until the job is finished!” Anything less is a failure. As I get older and sicker things get harder and I began to rely on others who offered to help.  Unfortunately, that means I am subject to their judgment of what I am doing, their willingness to do something they really do not want to do, interfering with their own plans and time, and if all of that is not enough…I just plain feel guilty, weak and worthless when I have to ask.  I hate doing it.  I am disgustingly hard headed and for the most part, have specific ways of doing things… (except when it comes to creating!!!)  My independence is one of the most important things I still possess. I am a classic control freak!  If I am asking anyone for help, you will know…I am beyond desperate.

My body no longer asks for a break it just flat out crashes, same goes for my mind. So, I plan thoroughly, then take more time and of course, grouse about it!  But I am still getting “most of it” done or paying for other parts to get done (when I can afford it).  I am getting heavy doses of learning patience with myself!

Honoring myself is more about patience and the creativity needed to hold on to and expand my independence than anything else. I am so happy that I am creative and tough.  The day I give that up or NEED others…is the day you will know I am finished!
"Sunshine" Jonathan Edwards

Wednesday, June 5, 2019

Armored up and strong....

Holy Crap…REALLY?  This continues to be the most difficult thing for me to do.  I was raised to believe that emotional weakness was one of the worst characteristics anyone could have.  If you were a woman you were allowed a very small amount of tolerable emotion, but there was a definite limit.  I was “trained” be the strong one, never show emotion, or let anyone see your weakness. I grew up in an incredibly dysfunctional family, and to just survive was truly grueling but it may have been the one thing that saved me.  It was an incredible unintentional strength and armor builder!

This vulnerable thing turns out to be one of my many major flaws and one I have consistently been aware of and working on.  I have read and studied this ad nauseam.  The single one consistent issue all of the experts seem to agree on is that “the only answer is recklessly discard more armor” or the emotional equivalent.  I have tried, and tried and tried.  Every time I open up, let it out, let it in…it all but destroys me emotionally.  And so I continue to remain armored up and strong.
"All That We Let In"  Indigo Girls

Tuesday, June 4, 2019

The first time... I truly do not give a "rats ass" !


I do not care how calm, mastered or controlled I think I am…it all goes down the toilet when the cat brings a live rat into the house!  All bets are off and out and out panic reigns.

Self-control is strength….Calmness is mastery…my ass!  This is full-on panic as  “NOT MY CAT” the cat (yes that is really his name)  and the now loose rat run through the house both running head-on into walls and furniture like a live pinball machine.  Our best butt-crack of dawn, pre-coffee idea of getting the rat out is to set up some kind of pathetic makeshift gauntlet with anything handy that has barrier potential including brooms and bar stools forcing the cat-rat pinball show out of the wide-open front door with every inside and outside light on. In the midst of this genius idea, he barks “the front door is wide open… neighbors are going to see us!” Although I use the phrase regularly, it is the first time that I can sincerely say “I do not give a rats ass!” who sees us! Just get the rat out of here!
"Taking it to The Streets"  Dobbies Brothers

Monday, June 3, 2019

TA-DA!

There have been so many “to-dos” recently, actually perhaps most of my life it feels like there have been more than my share of “to-do’s”!  WARNING: Grousing ahead…. When I was working, taking care of children, house, and husband I watched friends and family managing all of it so gracefully and have the time and resources to still take time off, go on great vacations, go out to dinner, date nights, yard services, new cars, and homes….etc…etc..  I hid my frustration and jealousy and soldiered on with the implied promise that if I kept my nose to the grindstone and shoulder to the wheel that all of those good things would come my way.  In addition to that if I did MORE there would be MORE. That is not how it always works and I had this ongoing oppressive feeling of being pissed off all of the time.  The “official rules” were if I did what I was supposed to-do, when I was supposed to-do it…I should have more! 

Finally, I think I am beginning to figure it out.  All of this time I have been waiting for other people to tell me how good I was, other people to give me more money, other people to give me more time, appreciate me more or all of the other things I felt like I should have earned through my ever-expanding list of well accomplished “to-dos”.  I was living for and expecting accolades!
I wanted someone else to give me all of the things I was not willing to give to myself.  And I did not truly appreciate all of the intangible amazing things that I did have!  It is not now nor do I think it ever will be about doing more, but appreciating, celebrating and “ta-da-ing” regularly all that I do have!!!

Stand back….There are going to be a whole lot more “ta-das” in my life!
"Carry On" Crosby, Stills, Nash & Young