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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Music is loading really slow lately...sorry...

Tuesday, April 24, 2018

Not a good look for me....

As it turns out, the bathroom floor is not a good look for me. Not that I was ever planning to have to have that as a “look” but apparently Monday morning my heart and my body thought it was something I should experience.  Full on…. lights out… pass out!  The only thing worse would have been doing that buck naked! I was at least spared that indignity; I was at the sink starting to brush my teeth. Apparently, this kind of thing just happens every now and again to cardiac patients when blood pressure drops quickly and dramatically.  They really need to include this little bit of drama in the handbook under  “this could happen to you, if you have heart failure” for goodness sakes!  No one ever mentioned this as a possibility!  Not that it would make me more ready for it.  But Jeeze…. by the time Ed (the nurse) arrived which was in less than 10 minutes (thank God I do not have to do hospitals anymore, this would have been 2-3 day testing bonanza of testing for them).  I was still pasty and sweaty but my BP was on the rise, still 94/56 but incredibly low for me.  The biggest side effect seems to be I somehow messed up my knee, some swelling, and yeee-ouch-ness, but can walk. It is more like a sprain or a pull, either way,
it sucks…It all sucks!  Spent yesterday in bed legs elevated and off all high BP meds to encourage higher BP (that is a first for me)  and on O2, today I am allowed to return to an “edited” version of normal.  Whatever that turns out to be!
 
"I'm a Mess Righ Now"  Ed Sheran 

Sunday, April 22, 2018

I'm Fine



Fine has a new definition!  Recovering from a tummy virus or a head cold or a sore muscle or a host of other maladies shared a common theme.  I would get better, it would go away, I would recover, I would be fine!  Now those little life aggravations require I really really really have to holler back…
I ‘m FINE…I’m FINE!

"Closer to Fine"  Indigo Girls

Friday, April 20, 2018

a gift, a reminder, a lesson...


Keeping my eyes open so beautiful little things about life can slip in without me working or begging for them.  The best gifts are never expected, they are surprises.  I was taught most of my life that life, jobs, friends, and good things would never come looking for me, I had to “beat the bushes” go out and look for them.  And to some extent that is right but it negated synchronicity and the opportunity for the universe to offer its unexpected gifts.  It placed the “I do not deserve” mentality in the center of how I thought.  When the universe “offers” answers I have to be able to recognize them. I have to have the strength and energy to open my heart and eyes enough to move toward those beautiful gifts….but I also have to recognize that as some of the things that comfort me and I have actively pursued begin to slip away,  it may be to make room for other important gifts to arrive.  I did not deserve this beautiful little wild iris in my backyard to arrive it just did without any effort on my part, a gift, a reminder, a lesson that all I had to do is open my eyes and see.
"Digging for Your Dreams"  Indigo Girls

Thursday, April 19, 2018

Later....

Will I ever get this right?  I am in the process of “minimalizing”.  And to be quite frank with you…it really is not minimalizing in the strictest definition, it is just getting rid of stuff I no longer use.  Decluttering is really a better word.  There has been a never-ending litany of  decisions and questions as I go through closets and cabinets….the one that comes to mind the most is “What was I thinking when I bought that?” ….and the item goes to the donate or pitch pile.  Then 2 weeks later as I rifle through the drawers or shelves looking for something I realize …ooops it no longer lives here. Well, I guess I did not really need that after all….My right to wrong ratio is about 50/50 and is about the same in life as it is in decluttering.  The end result I am looking for is to “let go” and live a simpler and freer life. I will admit it seems to be working. But I suspect that it will take some practicing and getting used to. It may be one of those things that will really be realized in the later....and that is ok too!
"Don't Give Up" Herbie Hancock, Pink, John Legend

Wednesday, April 18, 2018

My Magic!


Protecting who and what I am cannot be influenced by how others see my value.  It does not matter who it is….friends, family, religions, experts, or the medical insurance industry.  I cannot allow it to matter.  Protecting my magic, means I decide how to spend my time and energy.  It is now and always will be my choice.  There are now times that I have to let someone, that does not know me make a huge decision for me, and it is so difficult! My life has value….that is my magic and I will not allow them to take it from me regardless of their decision.

"She is Not Afraid"  New Direction

Tuesday, April 17, 2018

I cannot change them, the change has to be in me!

Today (and perhaps for a while) I may have to really really tune into my need to create.  I may need to figure out how to create a new life without the support of my hospice team.  The amazing group of people that have watched over me weekly.  The new insurance company is questioning my need, citing my lack of hospital admissions in the past year as being proof of being beyond their hospice criteria. WHAT????   This is where I would like to point out the outrageous flaw in this benchmark for hospice care!  Without hospice…mostly what I have is palliative care is exactly what has kept me out of the hospital…and I do hate hospitals!  Anyway, I have already cried, screamed punched my pillow.  But the reality is I can waste my time trying to fix or convince a company that has absolutely no interest in my health only in their financial obligations to the stockholders.  I may need to step up to the plate, get really creative and spend this energy I am wasting on being frightened and angry to open my heart and mind to figure out how to figure out how to move forward with my life.  It is not always fun…but I had no idea just how hard it was going to get.  The lesson has been…. there is nothing about the business of death that is any different from any other business. And the bottom line is my money vs. their money.  Life has nothing to do with it!  I am the only one that can create the life I love, and I cannot allow them to take it away from me....but I have to admit I am feeling overwhelmed!
"Look What You've Done"  Bread

Monday, April 16, 2018

My Birthday Promises to Me!


"Birthday" Beatles

Age does matter!


yea…
NO…
Some 21-year-old jerk made up  "Age only matters if you are a cheese"!  As long and as hard as I have tried to convince myself that age is just a frame of mind…there is indeed a point and time that my body has begun to speak much louder than my head…and my body is definitely winning.  But the battle is still raging.  I figure as long as I still “think” I can do it, that may be all I  need to do at this point!  Anyway….Happy Birthday to me! 


"When I'm 64"  The Beatles

Sunday, April 15, 2018

I Get Stronger....

There are so many things I wish I had done so much better!  I wish I had not cared about what people thought about me a long long time ago!  There would have been fewer days of beating myself up for not being good enough. But perhaps that was the re-direction that put me on the precise path I needed to be on. I am gaining the strength to not care about what others think now.  I have the courage to do whatever makes my heart sing (when this body allows).  I no longer care if it is right or wrong according to others…  all I need to feel is the right or wrong in my own heart and I cause no pain to myself or others.  For right now….I do not expect anyone to agree, nor do I ask anyone to.  Now I know,  I was never really rejected, it is part of my journey to learn the right and wrong of my own heart and as bizarre as it may sound to most…as my body fails….I get stronger!
"This is Me"  Kesha

Saturday, April 14, 2018

Holy CRAP… I did not do it!

Holy CRAP… I did not do it! 
Apparently, I hold the same degree of fear from the US Dept. of Justice as I do for the IRS.  In other words I do not do anything to rattle their cages, I hand everything in on time, I follow all of the rules (which you all know….is not my style) and have an overly healthy respect for anyone or any federal agency that could pretty much “f” up my life with so little effort.  So when I received an official notification from the US DOJ…I think my heart skipped at least 3 beats.  You would think by now, with all of the really scary stuff I have had to deal with in recent years, I would know the official universal instructions of  “How to deal with really scary stuff” by heart…. step one:  read first with non-emotional objectivity …then…adjust the panic level accordingly.  But NO... not this time… a big fat official letter from the US DOJ and I instantly go into a full-bore panic before even opening it, before reading the first word, or even while reading and after reading (because I was too damn panicked to clearly understand…what I was reading)!

I have groused miserably about the amount of business, bookkeeping and dogging insurance companies for NOT paying legitimate claims, filed in a timely manner, while I continue to get threatening collection letters from, labs, doctors, hospitals, etc…etc… (They just paid a claim from 2016.... my frustration is real!) I will confess that from time to time I may have been a bit militant in achieving my objective.  There might be a distinct possibility I could have said or done something that might be interpreted as borderline hysterically threatening…but I am not admitting to anything!   So….You can see that I did have a somewhat, however small, legitimate reason to panic!  I have always admired how a well-placed “hissy fit” can be a good thing and every once in a great while I would be successful…but never had I drawn the attention or examination from an attorney much less The US DOJ.

As my sheer panic abated,  it turned out…I am not the perpetrator (whew) but an official VICTIM listed in a Federal Court Case….WHAT?  Two employees of Florida Hospital have been charged and indicted by the Federal Government of selling official records of patients, and I am one of the victims  listed in the:  CRIMINAL DIVISION CASES…United States v. Tanganica Corbett & Kevin Weaver II…Court Docket No.: 6:18-cr-00035-RBD-GJK-1 (M.D. Florida)…Court Assigned: This case is assigned to Judge Roy B. Dalton, Jr., U.S. District Court for the Middle District of Florida, U.S. Courthouse, 401 West Central Blvd., FL 32801). 

I am still investigating how what and why I should do. I mean they have sent me pages of victim statement forms and I have no idea what if any losses I have suffered.  One would think that actually managing being sick while keeping up with the business of being sick… that there just could not possibly be anything else to deal with.  WRONG….and there are no self-help books or manuals for this! 

But just for the official record….It was not me, I did not do it…I am innocent…and, in the end, …that is all that matters!
"Respect"  Aretha Franklin

Confessions of a Closet Hoarder....Part II


And they have new homes…As the cleaning and organizing continues I feel lighter and freer as I see things I do not use any longer leave my home making space for new and wonderful experiences to happen. It was not like I was being crippled by or am not capable of functioning in a muddle… as an artist, I suspect it is another one of my superpowers
!  But I also notice TV hoarders” ever complained about how much stuff they had, they just kept stacking.  Yikes…The point is,  I did not expect this kitchen organizing overhaul to make such an impact on me personally and it has been a great wonderful freeing surprise! And here is another little “kind of sick” but control freak( Closet Hoarder) confession….If I wait until I have no choice of what happens to my stuff, then I get no input about who gets it…not that there is anyone clamoring to have my discards…but being able to give my unused dishes away to a group of semi-related kids (cannot figure out how this one works on the family tree) just starting their own independent lives has been such a great unexpected feeling of joy.   Another wonderful and unforeseen but magnificent confession of making life simpler!
"Wonderful Unknown" Ingrid Michealson

Friday, April 13, 2018

Are you a 6 or a 9?

Yep…I knew when I titled this, you would read it!  But I thought this was a wonderful thought provoking image.

Over the past couple of weeks of the “Cambridge Analytica/FaceBook” Congressional hearings, I have realized how many posts are incredibly one opinion or another with extremely suspicious origins, especially in regards to political issues.  I have decided to hide, delete, stop all posts that come without any personal comment or thought shared.  It seems that if the post was important enough to share then it should be important enough for the poster to expand, explain or share why they think this way.  Not just a request to share and repost to incite or goad..  It appears that is just how some divisive and ridiculous ideas are spread. I am always anxious to hear different points of view, but I would rather hear it from people I know and admire, not a meme that I have no idea who or where it came from.  I find now that many of the other posts, games, ads, pictures, and memes of unknown origin (in other words I am looking at the noted source) are being deleted too.  It is not that I have anything to hide or do not want to keep anyone “stealing” my personal info…If they find it interesting; I would be tickled to have them steal it. But…I do have control over my own Facebook experience and I would prefer that it be entertaining, funny, educational, uplifting, thought provoking and/or just plain good.  In this instance, I get to decide what is a six or a nine.
"Good Riddance"  OrtoPilot

Thursday, April 12, 2018

Magnificent side effects!

I have made a habit of NOT looking up every medication I am on and the side effects…I know right away when there is a crappy side effect. I do not need to look it up! And then most of the time when I complain, I am told that the benefits will outweigh the side effects and my body will adjust.  This is mostly the meds that just turn me into a walking zombie. But last week after having the semi-regular fluid in lungs, wheezing, breathing yuk the steroids were doubled! And WOO-HOO! Yea BABY!  If I were to become addicted to anything, you can keep the lousy opioids….bring on the steroids.  Better breathing, and an amazing amount of glorious energy...this stuff is the bomb! So you can imagine how disappointed I was when Ed came and pronounced that my lungs were clear the wheezing is down, and after Saturday we are cutting the steroids back down to the normal dose, I have to stay on the nebulizer…but damn…the steroids are nice!
"Baby, Now that I Found You"  The Foundations

Wednesday, April 11, 2018

83%...a C...Average

If I got a school grade it would be about an 83…a C…average…the story of my life….average. 

Making my bed. Who knew I would get points for making my bed…crap!  But for the points, I could do it.

Know Your Worth. I think this may be a trick question!  How do I figure this one out?  I do not think it is my financial worth…thank goodness.  But how the hell do you measure or feel your own worth?  Isn’t that something that will depend on what other people think or measure?   I wrestle with this one all of the time and still do not have it right.  I get all uppity and cocky and claim I am worthy only to have one person criticize or not give me the attention I need, like the internet/cable company people, the Post Office people etc. etc…and my self-worth is in the toilet and then I get hurt and angry.  It is a real work in progress.

Forgive Quickly. Forgiving it seems to be a 2 part process for me and I am missing part 2.  Forgiving part 1 is to stop feeling angry or resentful toward (someone) for an offense, flaw, or mistake… and then part 2 is to go on with the relationship as it was before.  Part 2 is the part I fail at.  I mean I will forgive, part 1 but I am bad at giving anyone another chance to hurt me.  I am often accused of not being there emotionally, cutting people out, or not letting people in.  That is my armor…I cannot afford to be hurt again. I will never be ugly or rude to someone I have forgiven or bring up the past, but I will not put myself back in the position to be hurt or angry again.  I have learned my lesson.  I have got the forgive part, but I just cannot seem to forget.

Let go of what does not make you happy.  Well, I thought I was pretty good at this until I began going through closets this week and realized for the better part of my life I was holding on to memories by holding on to stuff.  I somehow thought that if I had something I could remember.  I would no longer use it or wear it, but I was not going to let go of it either.  I would even go so far as to purchase something just so I could assign a memory to it.  Letting go is a new experience for me, but I think the momentary pain will be worth the freedom from all of the stuff.
"What a Wonderful World"  ("I don't claim to be an A student")  Same Cooke

Tuesday, April 10, 2018

The Ongoing Mystery...

“Not My Cat” appears to have taken up permanent residence here, however, his name remains “Not My Cat”.  As a homeowner, I still assert that I have some rights but when it comes to this cat, I think I am losing the battle. 

One of the high signs that he is not only moved in but is now in the process of taking over the place seems to be knocking things over and off.  His favorite place to do this is my bedroom dresser!  In addition to being right next to my bed, guaranteed to get my attention, it was also an incredibly “target rich environment! There is always a crap load of prescription bottles (all meds that I need to take multiple times during the day and night).  I confess there are times that I am just in a hurry and really quite tired of negotiating child proof caps and do not always get the lids securely screwed back on. BUT….the ongoing mystery is how the hell does he know which bottles have the loose lids. Those are the bottles that are the first to go over the edge with pills spilling out all over the floor EVERY SINGLE TIME there is a dresser attack.  I wish I could count how many times I have gotten up in the middle of the night taken one step toward the bathroom and found pills between my toes.

OK….“Not My Cat”… I have taken evasive maneuvers by cleaning out a top dresser drawer and putting all the meds in the drawer.  Bring it on I am ready for you, now!  Yes, I know...I have picked a fight with a 9 pound scrappy stray cat and really have no chance of winning the war..but I think I will win this battle.
"King of Anything"  Sara Barelles

Monday, April 9, 2018

Badass Super Power!

Too sensitive...I have been accused of this all of my life!  As the only female in a house full of men and boys, every time I had a “moment” I was summarily dismissed as the “hysterical female”. God forbid I display any emotion or sensitivity at all….however their burbs, farts, and door slammings were absolutely celebrated!  The message I heard was I was unreasonable for being offended by rudeness.  The same thing happened just about every time I have had a legitimate problem with an art business when there was a problem, they automatically became defensive and I and my legitimate problem was quickly dismissed as coming from the “egotistical unreasonable artist”.  I mean how dare I question a gallery about the whereabouts of a piece of my work or payment for it…either would be fine with me. There was a contract in effect. The underlying message I heard was If  I wanted them to continue representing me and selling my work, I should stop asking questions.  I have been ignoring, throttling and holding back my hurts and feelings my entire life just to have others not have an excuse to dismiss me or my needs as too sensitive.  I am just now realizing this could be my bad ass superpower….Now…I will be brave enough…even if it makes people uncomfortable!
"Light On" Mark Ballas

Sunday, April 8, 2018

Trust me on this one!

Until you step away from the normal life you will never know how much trust you will need…or how shaky that trust can be. I am quickly losing that simple undisputed trust we are all born with. It is the trust that our physical bodies and organs will just function and support our life. That the meds will work like they should or that there is a doctor or nurse that can fix it.  It is so simple, so crucial and such an expected underlying concept of trust that we forget about it…until it doesn’t…then the entire concept of trust in anything becomes unbelievably skewed.  The only trust I am left with is the trust in my own emotions and my own spirit. I have to believe with all that I am, that I will just magically know how
what and when.  That is the kind of trust in me that gets really shaky.  Trust me on this one!
"Broken Things"  Dave Matthews Band

Saturday, April 7, 2018

I am learning….better late than never!!!

I have learned so much these past few years...good things I wish I had known when I was younger...life would have been easier. 

I have learned that some things don’t turn out the way I planned, actually, they rarely turn out like that...but sometimes they turn out much better than I planned.

I have learned that some things go horribly wrong and that they may never get “fixed” or put back the way they were before. 

I have learned that some broken things are going to stay broken.  Hoping and trying to make it different is sometimes a waste of precious time and energy.

I am learning I can get through the bad times by appreciating the lessons they teach me and to keep looking for better times rather than trying to “fix” the bad ones.

I am learning….better late than never!!!
"Bonfire Heart"  James Blount

Friday, April 6, 2018

Confessions of a Closet Hoarder.....part 1

My son says I am a borderline hoarder…actually, I may be more like a full on hoarder…I am just really really good at stuffing things away (aka hiding my addiction).  So now I think it is time to get rid of stuff, or at the very least try to figure why the hell I have so much of it!  The easy answer is “ I am a baby boomer” from a family of 5…nothing was thrown away and everything was passed down,  Hanging on to things because I might need them later….then there is also the artist "collect everything" thing …so I have a double dose of potential hoarding characteristics.  The other excuse that I will offer, is I have been in the same small house for over 40 years and I have got stuff to prove it! 
I began taking a class on this online…I finally decided I needed some help, I mean if I was going to simplify, organize, clean the house by myself, I would have done it a long time ago….clearly, I need help!!! The class is full of empathy for us unorganized self-proclaimed hoarders, and it feels like it is as much emotional help as anything else.  She is using a bit of the "Swedish Death Cleaning" Technique. Yes, there really is a book and an official system approach to this...Who Knew!!  It is the process of organizing and de-cluttering your belongings before you.... well, die. But it's as much for you as it is for the people who come after you. For you, death cleaning can be the motivation to live with less, by considering how much I have and do not use ... It really is time for me to simplify and make life as easy as I can!  So today I went through the hall closet...I could barely close the door after putting the vacuum cleaner away.  Please note it is still full…but not as much, and I can close the door without having to get a running start to push it shut. I filled bags for the charity pickup truck on Monday of clothes I have had for years. Clothes that were given to me by a cherished friend that died, things I wore on my trip to Italy with Mother 10 years ago, the outfit I wore to my son's first wedding, both of them.  I suspect this might be a really tacky place to note that they are both on their second marriages  Everything had an emotional attachment.  So, I have had some great memories today, I have laughed and I have cried and I have let go.  On some level, it does feel good.  On another level I know there is so much more to do….stay tuned…
"Closer to Fine"  Indigo Girls

Chemical Queen of the World!




CRAP…here I am again.  After almost a month of everything is working and the meds are doing what they are supposed to do, vitals are good and in medical terms stable…yesterday I am back on the unstable stack.  More meds...more meds…and here we go again.   For a woman that spent the best part of my life taking absolutely no meds at all…except for an occasional antibiotic and low dose pain pills for dental work… This latest addition of meds may qualify me for the chemical queen of the world….


"Overkill"  Colin Hay

Thursday, April 5, 2018

and...that is how I think it should be!

Don’t ya’ just hate these corny cliché platitudes?  Yes, they make sense.  Yes, they should be blatantly obvious. Yes, I aspire to achieve them…and damn….I fail…and I do not mean I fail every once in a while…I mean I fail on a regular basis and it is the same crap over and over and over again!  Even a puppy figures out that if his nose is rubbed in it…he should not do it again!  But me…oh no not me…if there is the littlest amount of fun, pleasure, or enjoyment involved in it…I am going to be all in….damn the consequences….it is all about the now!...and that is how I think it should be!
"more o that"  Eric Bibb

Wednesday, April 4, 2018

Smashing stuff!

I have never broken anything on purpose.  Broken has always been a bad thing for me. It meant I would be sad, uncomfortable, late, and/or inconvenienced. And it always cost me more money than I had to repair it….so add financially destitute to this list.  
Who knew how great it would feel to smash plates with a hammer?  I have seen TV sit-com therapists advise their clients and show them how to hit things and other people (with those goofy pillow bats).  I thought maybe, it was more joke than any kind of real therapy….but now!  Now, I get it!  It feels great!  Of course, I would have to argue that the marvelous sound of broken glass is a huge part of the experience! The whole process of shattering plates and then reassembling them into something absolutely different was amazing for me.

Creating is one thing I have experienced many times before and it always feels good…but destructing before the creation can begin has been terrific and a very cool life lesson.  Maybe the universe was telling me to let go of, smash and destroy all of the life expectations I (and others) think I should have…and embrace the idea that becoming something totally new and different is going to take some deconstruction first. Instead of grieving…perhaps I need to celebrate the breaking and the changes and then go smash some more plates!  It really does feel good!
"Bottle (in the backseat)"  Broken Anchor

Tuesday, April 3, 2018

I Got Magical Shit to Do!


I have come to a spectacular conclusion!  The most amazing way to stave off and decrease the depression and symptoms of long-term terminal chronic illness is to be busy.  Now for the better part of my life, I took vacations from busy, so this intentionally busy is a bit counter-intuitive for me, besides I really do "slug" well!  Although this "stay busy" is not a foreign concept…I was not ready to embrace it.  Being “sick” was the perfect excuse to do nothing, like a never-ending vacation! In other words NO WORKING…But this is the flaw in that logic…In the past when I got sick there was an expectation of recovering. So resting and doing nothing is how I got better.  It is different with a terminal chronic illness, there is no recovery (and if you need to, go ahead and insert your miracle recovery story here).  I have to find a whole different approach to being sick.  It is no longer about healing…It is about living fully and living NOW within the confines of what I am physically able to do…and no one teaches us how to do that.  In many ways, I am so lucky….I am a maker, a creative, an artist. However, this may be a great place to point out that housekeeping, lawn care, and chores are not a part of my busy.  That is definitely nasty work and I will throw out the "I am sick" card everytime I think I can get out of crappy jobs and get away with it!  But creating…. oh how it challenges me…forces me to experiment...explore and learn.  It appeases my instant gratification addiction and it seems to give me some kind of self-importance (instead of that feeling that I am nothing more than a constant chronic drain on my family and its financial resources)   I am so deliriously happy that I got magical shit to do!
"Living in the Moment"  Jason Mraz

Sunday, April 1, 2018

and so I missed my own opening reception....


Nope I am not in a wheelchair, but that is the symbol they attach to me for parking purposes, it is embarrassing.  

As the disease progresses, so does my need for my “gimp” parking.  It used to be mostly in the summer, at the grocery store in 98-degree weather on blistering hot black asphalt that I truly appreciated parking close, but now I appreciate it all of the time! 

So last night’s opening art exhibition where my work was exhibited, (and jazz concert) hit me with more surprise and hurt than I could have imagined possible and I cannot remember when I have felt so disappointed and hurt.  There was no accessible handicap parking or anyway to get close enough to even drop me and this lousy equipment off. Incredibly unexpected feelings of hurt, anger, frustration, guilt, not good enough, sick and ok anger and hurt again washed over me.  And as I desperately try to figure out how to keep my energy possitve..I do not ever want to waste my precious energy on negative stuff.... this was part of my 2nd communication with the city…..

Thank you for such a prompt response.  I truly appreciated your effort in securing parking to accommodate me.  It somehow made it even more disappointing when I could not participate when that effort and the handicap parking you arranged was made inaccessible by unattended police vehicles blocking the entrance. It was obvious that there was a miscommunication but I do want you to know how much I truly appreciated your attention and understanding.
I am regrettably new at this "handicap thing”, but wonderfully blessed to have the opportunity to continue being active... with help. I never....never thought I would understand how frustrating and demoralizing it could feel to be excluded.  I am not proud of myself but do have to confess, like many of us, I have been guilty of grumbling at the empty handicap parking spaces at the front door of public places when I had just hiked in from the back of a hot parking lot! I never genuinely understood how important simply participating in life and my community could be.
I applaud you for your valiant efforts to correct the problem and after this experience; I would be honored to aid that effort in whatever way you think may be helpful to make these important and necessary changes.  It is my sincerest hope that no one in Casselberry ever again, feels the rejection and disappointment I did last night.
"Ooooh" Child"  Beth Orton

Saturday, March 31, 2018

I found my magic in the aloneness…

Some people want to call any woman that does not fit in with the social norms a “wild woman”.  I guess that makes them feel better.  I think they want to like wild women, but it scares them.  Maybe they are not ready to let go of the rules. But it has been my experience that letting go is the only way to live a wonderful life, even though I personally have been a bit late arriving at this truth. I have learned to listen to what speaks to my soul.  I know that I have to be smart enough to know and find what I need.  I have to be strong enough to know I need to do this alone. And finally brave enough to trust that God, the Universe or Source (One…all 3…or maybe something none of us have ever been able to imagine yet) will guide me. Historically and religiously we have all been taught and told we had to be part of a tribe for safety and security.   I have no doubt that there is a marvelous advantage of like minded close-knit groups of friends and family.  What they neglected to teach us is that in birth, death and many other important critical moments of life happens in our aloneness. If being alone is uncomfortable it allows the seeds of doubt to take root and turns important life moments into frightening and painful occurrences. What makes big life events so scary is there is no choice, the outcome is unknown and we have to do them alone.  I think I found my magic when I learned this…I know this in the deepest part of me. I know in my heart that the alone times are intended to be powerful spiritual encounters.  Alone is how they are intended to be experienced.  I celebrate and dance in the aloneness of a full moon every month. Alone does not mean I am depressed or not loved…alone is my opportunity to be bright… and beautiful… and strong just like the full moon… it is how I am reminded to celebrate my life!
"Moon Dance" Van Morrison

Friday, March 30, 2018

One of my favorite writer, poet, musician creative!!!


During a recent conversation at the Boston Book Festival, the wise and wonderful Amanda Palmer spoke about the harrowing experience of watching her best friend die and reflected
“Everyone in this room is going to be gone pretty quickly — and we will have either made something or not made something. The artists that inspire me are the ones that I look at and go, ‘Oh my god — you didn’t have to go there. It would’v been safer not to — but, for whatever reason, you did.’ And every time death happens, I’m reminded that it’s stupid to be safe… Usually, whatever that is — wherever you don’t want to go, whatever that risk is, wherever the unsafe place is — that really is the gift that you have to give.”


"In My Mind"  Amanda Palmer

Has Jesus been jetisoned?

I am done with most white evangelicals.  I am just done...I do not understand and I can no longer tolerate the hypocrisy, inconsistency,  selective mercy and veiled supremacy!

Recently, evangelical leaders and entire congregations have publically and literally given a “mulligan” to a white 3 time married Republican President so riddled with depravity, littered with extramarital affairs, unapologetically vile, with the crude behavior of a schoolyard bully and a vast resume of legal and moral filth. There has been no sign of apology or repentance and most of our Republican senators and representatives have silently lined up behind this behavior to achieve their political agenda. It boggles my mind!

Where did the Christian tenet of salvation through Christ by earnestly repenting, accepting forgiveness and sin no more become obsolete?  What happened to  "If your brother sins, rebuke him; if he repents forgive him." (Luke 17:3) or "Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me".  All of the sudden those pesky parts of Christianity are absent when personal political interests are at stake!   Has Jesus been jettisoned?

The willingness to align politics and religion is a pricey marriage. Compromising religion to justify a truly corrupt, self-righteous and unrepentant man is dangerous.  Evangelicals….you might have gained a Supreme Court seat but you have lost so much more.

It is my hope that this Easter weekend, wise, decent, good-hearted, faithful people can truly see the cruelty, lies and the ugliness of this person and honestly with an open heart reexamine the faith they hold dear. 

And all of this rant is from a certified agnostic...why aren't the Christians outraged!
"Walk the Walk"  Eric Bibb

Thursday, March 29, 2018

Kintsugi THIS!!!!



Kintsugi is what it is officially called.  So if scars and flaws are what make me unique….all I can tell you is that I am really really really unique. I have had 14 major surgeries.  Kidneys x7, lady parts x2, caesarian sections (yep I am counting them!) x2, Thyroid x1, Open heart x1, SICD implant x1.  Hold on…need to do the math again….yep 14 of them and the scars to show for them…but there is no gold and I promise there is no beauty either.  There are times I am so ashamed of them…so big…so ugly…so many.  So… it is easy to see why the Kinsugi philosophy appeals to me, even if there is no real gold.  I have fought long and hard most of my life just to be alive and no one will ever understand the guilt of the financial burden I have put on my family. For the most I am incredibly grateful, other times I am just friggen’ tired!


"Better Off Now"  Trent Dabbs

Wednesday, March 28, 2018

So....Can I be a half badass?


So…maybe I am a “wanna be” badass!  Willing to write all of my feelings down, but not really
sure I want everyone to read them.  I am just now figuring out what my own heart is about.  I am scared to death to open myself up to vulnerability.  Afraid it would be so easy for someone to swoop in and undo everything I have figured out so far….so can I be a half badass?


"Hold On, I'm Coming"  Same and Dave

Tuesday, March 27, 2018

Until I pointed it out!

They got my name backward!  And…. I can raise hell, crab and bitch.  But….I cannot change it… my only choice is how I react. It is the only thing I have control over.  For a control freak…I tend to hold on to that one with absolute, intense sincerity!  So the question always becomes, when to let go and when to stand up or enforce my boundaries.  For all of the years I have donated and taught there at Casselberry, I thought they would know my name…so I think my feelings should be really hurt and a bit more offended than regular!  But what does it get me?  They will not reprint the poster.  I think what I have learned is that my expectations of having a little more attention in exchange for the time I have given them did not exist.  And NO, it does not work like that.  The lesson is…if I donate something even my time, I cannot expect anything in return. It was my decision to donate. The joy has to be in the act of giving, NOT in expected returns.  And the reality is…the font is so small, I bet I am the only one that noticed!
...until I pointed it out!
"No Such Thing"  John Mayer

Monday, March 26, 2018

Not my words, but it is time for me to embrace them!

'I think midlife is when the Universe gently places her hands upon your shoulders, pulls you close, and whispers in your ear:
I’m not screwing around. It’s time. All of this pretending and performing – these coping mechanisms that you’ve developed to protect yourself from feeling inadequate and getting hurt – has to go.
Your armor is preventing you from growing into your gifts. I understand that you needed these protections when you were small. I understand that you believed your armor could help you secure all of the things you needed to feel worthy of love and belonging, but you’re still searching and you’re more lost than ever.
Time is growing short. There are unexplored adventures ahead of you. You can’t live the rest of your life worried about what other people think. You were born worthy of love and belonging. Courage and daring are coursing through you. You were made to live and love with your whole heart. It’s time to show up and be seen.''      Author: Brené Brown
"Bruised not Broken"  Joss Stone
Several years ago I began going to a "Gifts of Imperfection"  book group and was so traumatized by the act of being vulnerable, that I dropped out after 2 or 3 meetings...I was able to hide my fear for a while but knew I would soon be exposed...and I left.  I left rather than letting anyone know how truly confused and vulnerable I was.

Or is it just plain selfish from another point of view?

That is a question I never thought to ask myself….Once you do the “until death do we part”  I think I assumed if I loved something…I was obliged to love it until… it…they…or I was dead.  I promise no one has ever asked me the question “Do you still love……?”  It is expected that all love is perfectly steady, never wanes and lasts forever.  But what if it is ok if it doesn’t?  What if love changes?  What if love expands to include more, or diminishes to become more focused?  What if my love of creativity becomes more about me and less about them?  How profound would that be?? Or is it just plain selfish from another point of view?

"Me"  Paula Cole

Sunday, March 25, 2018

but I might decide to do it again....anyway!

Ok…ok…ok…but….
Don’t you need to understand the negative situation thoroughly so you know what to avoid in the future?  Maybe I do spend too much time, giving negative people and situations my attention.  But I want to consume the entire experience; I want to understand what if any part I had in provoking the situation, particularly if I plan on doing it again!  There are some things in my past I can never change and some were my fault.  I have wondered if emotionally dragging them around my entire life may be why my physical heart is so sick…so, I am not going to hold on any more…I will look at it…make a decision…and move on…But beware, I might decide it is worth doing it again….even if you don’t like it!

  "Give Peace A Chance" John Lennon

Saturday, March 24, 2018

and....STILL working on it!

Somewhere between trying to figure out how I feel and what others think I should (or should not) feel there must be some kind of comfortable REAL!  There is a great swath of people that when they see who and what I am, are nicely complementary, tell me that they wish they could do what I do, and then they quietly back up and fade away.  Then there are others that see me and just out and out disapprove because I do not fit into what they think I should be…but in truth…I think most of them really just do not care.  Their mission is to make their own lives as comfortable as possible.  If anything about me is different, strange or challenging what they believe to be true then they either speak up to change me, or they walk away.  I just have to keep reminding my soul that I am not freakish or screwed up….I am just me and I am still working on it!
"Higher Ground"  Stevie Wonder

Friday, March 23, 2018

"Worthless Slug Syndrome" Cure

So here is a new/old revelation!  I have kind of applied this toward my art and studio for a long time.  It is Sark’s idea and she called them micro-movements!   I think I may have mentioned at least 47 times before in this blog how utterly frustrating it is to have this body “crap” out and just refuse to do what I want it to do.  It has become a huge source of frustration and wrenching depression! Why has it taken me so long to figure out that I can apply this to my everyday life?  The last couple of days, I realized I could apply micro-movements to all of my real life not just in the studio…. note: not because I planned it that way, it just happened. Although slow, I have accomplished some things, moving in the right direction, regardless of how much progress is made…as long as there is some progress… and it feels so so good. Feels like I am able to fight off the “worthless slug syndrome”.

           "Heart of a Hero"  Kathy Heller

Wednesday, March 21, 2018

A Control Freak...

Some of the most meaningful quotes seem so remarkably clear and evident that my first response is usually…" I need to do this….
DUH…who doesn’t know that!” BUT…when the time comes to apply it…it really gets tricky.

This is one of those that has always touched my heart, but I have a dickens of a time trying to figure out “when the time comes”!  How am I going to know when the time comes?  Has it already come?  There are times that I feel there has already been a “letting go”.  I really do not get upset about many of the things that I used to feel so adamant about.  I often wonder if this is about some of the natural progression of life, or is it that I have finally realized that what I think, what I want is only important to me.  I cannot depend on others to feel like I do…if I want it, if it is important to me..but then I have always been 
accused of being a control freak!
"No Time"  Guess Who

Saturday, March 17, 2018

Convincing you or me?

What most people do not understand about long-term chronic illness…is how much energy I spend convincing you that I am fine!  I know how uncomfortable you are around me.  I watch awkward reactions from friends and family that are unsure how to acknowledge or ignore this illness that is now a part of me. Being out in public or being around you does require some pretty impressive acting skills and some of us are better at it than others. The obligations as a parent, Nana, wife, artist or just a plain person that I never had to think about before now require serious examination of the amount of energy I really have as opposed to the amount of energy I think I should have. I am not sure where I fall on the performance scale or how believable I am but I think it is pretty good, you all tell me how great I look, even when there is an o2 tube poked up my nose…I find myself immersed in a chronic series of performances and I am never sure if the performance is to convince you or to convince me.
"A Little Bit Me, A Little Bit You"  Monkees

Thursday, March 15, 2018

Wrong Doing????

I have been around awhile….(ok, no tacky age comments please!) but I have never seen the amount of Evangelical, Charismatic and other Christians oblivious to resounding wrong, as I do now.  In an act of total disclosure, I was raised Episcopalian/Catholic and have never truly understood the evangelical or the charismatic movement. I do now have to wonder why so many of these faiths are irrationally upholding the validity of a man that lies, cheats, bullies, belittles, threatens and then pays off people to keep quiet? I have yet to discover any religious teachings that find this acceptable.  It has been my experience that all varieties of Christians have typically been committed to the archetypal biblical interpretation of forgiveness. As I recall from my old and current New Testament biblical studies, a condition of forgiveness is a penitent acknowledgment of the wrong/sin and a sincere effort to change and go sin no more.  When neither of these situations is evident why would anyone forgive and continue to defend, support and uphold such a person?  I support everyone’s right to practice their own religion, but I sincerely question and do not understand how religion is now being manipulated to rationalize unquestionable wrong doing.  
"Ave Maria"  Guy Farley

Wednesday, March 14, 2018

No One tells you about this part!


No kidding...NO ONE ...I mean NO ONE ever explains in detail about the parts between what does not kill you makes you stronger!  There should be some magic wand that I could wave and skip all of the cranky, pissed off, and grumpy before I get to stronger.  It just does not seem to happen like that!  I mean there are periods of wonderful enlightenment and strength but it is always followed by some degree of nefarious negative!  I mean the cruelest, most frustrating and damaging negative thoughts you could possibly imagine.  It is almost like bi-polar manic depression…and it sucks!  Sometimes I just need to retreat, lick my wounds and rebuild my strength (and that usually comes with creating)...over and over and over again!

"Nobody Ever Told You"  Carrie Underwood

Monday, March 12, 2018

I am OK with NOT knowing

It has taken years and years of being afraid I will be judged by the Christians in my life, but finally, I have nothing to lose, it is not about being judged and rewarded or punished.  It is about being honest with me.

I am “AGNOSTIC”. 
Wikipedia says agnostic means you believe  "the truth values of certain claims — especially metaphysical and religious claims such as whether or not God, the divine or the supernatural exists are unknown and perhaps unknowable.” Gnosis is from the Greek word knowing; agnostic is simply a state of not knowing.   It's a belief system that, according to a recent survey, is held by up to 23 percent of Americans. (Although, the survey also grouped atheists with agnostics, so that number may actually be a bit lower.)

Being agnostic does not mean I hate religion. In fact, many agnostics (like me) were raised Christian, and still consider themselves “culturally religious”. I do not reject religion as the one true way to a heaven; I’m just not convinced there is a heaven, hell, the underworld, purgatory, or aliens, ancient or otherwise. Everlasting life does seem to be the main objective of most religion. Leading a good life by the prescribed rules buys you a divine happily ever life after death.  Breaking the rules means there will be horror and pain after you die.  It is a simple reward/punish system that requires suspending belief in scientific laws. If or when I do good, it is simply because I love and it feels good to do so, not because there is a reward or punishment waiting for me after death.

“Occam’s Razor” is a scientific theory of dealing with problems with multiple and equal answers, makes sense to me.  It is the problem-solving principle that, when presented with competing hypothetical answers to a question, the simplest explanation that makes the fewest assumptions is typically the correct one.  I have observed that most religions are laden with stories of magic, the supernatural and other claims have scientifically been proven could not have existed then or now. I have also always been personally traumatized by the amount of heinous brutality committed in the name of organized religion with the purpose of promoting love. I will acknowledge that organized religion has inspired some of our greatest historical figures and some of the most giving, loving, kind people I know. But it has also provoked some of the most hateful, intolerant, hypocrites too.

I freely choose agnosticism; it frees me to think that anything concerning the spiritual, the sciences or the metaphysical is possible. Being agnostic means I can, and do question everything, and I am willing to listen to other intelligent opinions as well as my own heart and soul, to do the work and research to find out why I do or do not choose to believe.  It means I can question, be completely open to and genuinely value every spiritual belief system. It means that when I or other agnostics do something kind or good, we are doing it from our hearts, not because of the expectations of reward or punishment in the afterlife. 

Being agnostic brings me peace. I'm perfectly comfortable not knowing, or even thinking I'm capable of knowing all the answers to all the endless questions.  The fact is I think it would be pretty arrogant to assume that I or anyone else for that matter could ever know with total certainty that there is or isn't one or many divine beings out there calling all of the shots in the universe. Not knowing does not bother me.  I can accept the concept that all beliefs about life and death are based on unimaginable uncertainty. 

I am agnostic, the only mystical thing I believe in without question…is love.
"All That We Let In"  Indigo Girls

Sunday, March 11, 2018

Maybe not brave enough....


I could not imagine anything more wonderful than being selected to show my work among 52 other of the most creative women in Central Florida at the Osceola Art Center’s “Creativa” (Woman Made Art)  Exhibition…and then this happened!  Thank you so much for such an amazing honor!  Magic still happens!

It is a gift from the Universe  (and Osceola Art Center) when I am rewarded for pushing through fear, continuing to do what I am here to do, and that does not just mean creating, but being brave enough to keep putting it out there.  This is why I am here! Brave enough to work, Brave enough to show...Brave enough to be seen....but I did snatch ut the O2 tube off of my face before the picture and crop out the walker...so maybe not ready to be seen with all of my weaknesses.
"She is Not Afraid"  One Direction

Friday, March 9, 2018

Just "rambling"


I seemed to be somewhat blessed with words, but here is the thing….Are they the right words?  The more difficult the concept, the more words I write and I do tend to go on and on about nothing!  The quotes are rarely mine, and for the most part, credited to their author when the picture that I posted has that info, but sometimes it doesn’t…sometimes I will legitimately look for the author but sometimes not…I just needed a prompt and that day… that quote picture moved me for some reason…that part is simple! Sorry about that!  To all of the “real” writers with “real” words please accept my apologies.   I never called this “writing” it really is “just rambling” and for the most part, it is simple.  Thank you, Jack for reminding me….be simple.

"They Know"  Eric Bib

Thursday, March 8, 2018

When someone else says it so much better...

all I can do is copy paste and share...this is just perfect!  
                                                                                             IT IS PLENTY!


"Lay Down"  Melanie

Wednesday, March 7, 2018

Forgiving is not Forgetting...


Forgiving is not forgetting,
it is remembering without anger. 

I will never forget, 
forgetting would mean that I did not learn the lesson, that I am leaving myself wide open and even asking for the same painful experience over and over and over again.  

I will forgive, 
but please, never ever ask me to forget.
.
"Forgiveness"  Matthew West

Monday, March 5, 2018

I expect courtesy!

This makes twice in 3 days, I have felt like I needed to stand up and defend myself for what I feel is right and truthful for me.  The Universe is really teaching me how strong I am going to have to be. So, for those that have been so aggressive toward my opinions, I thank you for the lesson and opportunity to dig deep and find my own strength without hurt or anger.  I do not need to accept or believe what the majority or religion says to be a good person.  I am a good person.  I am allowed to have my own thoughts and opinions.  I will be honest, kind and respectful towards others. And I expect the same courtesy to be afforded to me, always!

"Haven't Got Time for the Pain" Carly Simon

PS...I find it more than interesting that each of the evangelical or sarcastic comments made about my political observation were made by men in defense of another man whose public treatment of women is intolerable.  I wonder if they felt waving a Bible or publicly embarrassing me would keep me, a woman from her feelings, her own heart, her beliefs, and her own political observations and opinions.  

Just because...it feels good!

Yup...it is a video...but it is worth the wait for it to load!

What I am....

Maybe it was just one of those weekends….Maybe it was the run-in with the healer/accupunturer/chiroprator/snake oil salesman…or maybe it was just time…this past weekend beat me up emotionally and I am so happy to see the structure of the week and Monday begin.  I know that must sound ridiculous for most, but after so many years of a traditional business week, there is some unexplainable feeling of structure and some mysterious power that comes with Mondays…when I had a M thru F job I hated Mondays…but now there is something quite comfortable in the feeling of starting again, fresh and new!  Welcome new week. I need to breathe in and remember who and what I am in the world.


"What I am"  Eddie Brickelle