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 raunchy disease. My words always help me understand that in this life there will be times that are crappy painful and unexpected but tucked in there are the amazingly wonderful, too. That is when I realized the only control I have over any of this is how I chose to experience them! I realized that I could understand, celebrate can survive even better when I could express these feelings with my own words of courage, humor, and grace. I am the Queen of my own life and the choice is mine!

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, April 29, 2018

High Tech Changes...

A video doorbell…and I have to say after 40 years in this house I have never had a real doorbell much less a video/audio doorbell and a keyless lock too, just what I needed…another “secret code”!  But now if I need help and cannot get to the door I can still answer the door and even give you the key code to come in without moving.  Totally and completely horribly lazy…Woo-hoo!  And here is another perk I can detect salesmen, Jehovah Witnesses,  Scientologist, Mormons or any other people that feel like they need to save my soul or sell me something.  It is kind of like a two-fer” bonus.  My plan is to avoid uninvited door knockers, stay safe and independent as long as possible…
"Changes" David Bowie

Saturday, April 28, 2018

Delicious Synchronicity!

I am feeling like I am getting a little warmer!  I have had such restlessness lately.  I chalked some of it up to the fact that I have finished doing the art exhibitions I had planned on doing this season, I am not teaching  Art Business or Artist’s Way and the little facilitating I have been doing on Second Sunday’s have not been well attended.  It was like the universe was trying to tell me it is time to move forward, but I just cannot get my heart wrapped around what is next so I slip back into the world I knew.  The world I knew does not seem to “want” me anymore.  My “go to” is always creativity. 

In my heart I have just felt if I could marry my spirituality to my creativity I would have an AH-HA moment.  They have always been linked in ways I really never understood, I just know that they are.  I have begun  “ Swedish Death Cleaning” under the assumption that if I simplify, organize and get rid of all of this junk cluttering my life that I would make room for new inspiration to arrive.  I signed up for a free college course about creativity, I have combed the internet for art therapy, ordered a new workbook by a local artist.  I feel like I have been a desperate fisherman casting out my line and reeling it back in time after time with no catch…and I just keep casting….but still I know that art, creativity, and spirituality are connected.

I am not complaining, it has been so frustrating feeling like the dots are so close together, but I just cannot seem to connect them.  And then today, synchronicity finally seemed to nod its head at me when a free art therapy course from the University of Florida showed up in my inbox.  It seems to have a much different base focused equally on the creative and the spiritual healing..not just touting how many patients have had higher treatment and remission successes, but concentrating on preparing and healing my spirit….and it is just starting.  Thank you synchronicity…. thank you universe….I am getting warmer!
"Funny the Way it is"  Dave Matthews Band

Lay down…feet up…pass out...in that order!

The official report is in...Last Monday's close encounter with the bathroom floor was Syncope ….sometimes they just need to talk to me in “real people speak”  in the meantime here is the official  – Wikipedia explanation… Syncope, also known as fainting, (well DUH!) is a loss of consciousness and muscle strength characterized by a fast onset, short duration, and spontaneous recovery. It is caused by a decrease in blood flow to the brain, usually from low blood pressure.

So here is the crappy part, it is just another part of heart failure and as the disease continues I should expect it to happen more often.  Again, I would like to point out…. this rather disturbing little detail was NOT in the Heart Failure Handbook!
    
Part of this week’s nurse discussion was to think back and get very clear about just how I was feeling before I blacked out. Lightheaded, disconnected, confused ( I could not remember how to brush my teeth) explains it, however, differentiating regular confusion from “holy crap” you are about to pass out confusion may take a little practice.  I have been taught that the best way to deal with this is to be very aware of the “feeling” at the onset and “GET DOWN” before I fall down…the danger is not in the actual losing consciousness but hurting myself in the fall (I had a really sore and banged up knee and understand that one completely).  All I can do is mitigate the possible damage by being in a safe place when I pass out! 

So the official treatment is... lay down THEN faint…rather than faint and fall down.  Who knew????   Lay down…feet up…pass out...in that order.... Got it!
"Counting Stars" Gardner Sisters

Friday, April 27, 2018

Damn Girl!!!

Most everyone is aware of my quasi-hoarding issues by now.  They are only “quasi” because I managed to smash all of the stuff in hopelessly crammed closets, cabinets and behind or under anything that stood stationary for more than 2 consecutive days!  I suspect my cooking and cleaning DNA is genetically linked and horribly deformed, that is if they exist at all!

In my own defense, of which there is gracious little to offer, I have been taking an online class "365 Organizing" with Suzanna Kaye and Spark Organizing. She has been my teacher, my coach, my support and all in all an incredibly patient angel!  I am about 3 weeks in…the kitchen cabinets, my bedroom closet, hall closet, linen closet all have doors that I no longer have to get a running start to push closed….but it is now time to begin in the studio….AUGHHHHHH!!!!...I was going to start last week and although there was a physical reason I had to postpone it several days…even I will admit I was a bit relieved for the respite!

The day before yesterday, it began, on a limited basis.  I managed to avoid the overwhelming job of taking on that entire studio by cleaning out the small closet behind the studio door that truly had not been opened for at least a year. An overhead projector, VHS Camera, 35 mm camera, and a boom box just some of the latest circa 1980 technology!  A very small closet not more than 30 inches wide produced 4 garbage bags of donate and 3 bags of trash…..That little itty-bitty closet was packed tight!!!......DAMN GIRL.....what was I thinking??? Why was hanging on to all of that stuff???

"NO" Meghan Trainer
And this is the song I have to sing the whole time I am cleaning out closets!
"My name is "No"
My sign is "No"
My number is "No"
You need to let it go
You need to let it go
Need to let it go

Thursday, April 26, 2018

"Healing" It is not what I thought it would be!

I am not special because I am dying…I think I am special because I have learned what healing is….and it was not what I thought it would be!  Typical healing is what the body does.  It does it, without much participation on my part.  Healing is what our body was built to do!  Have you ever really watched a cut on your finger heal?  It just does!  No guidance, prayers, special medical intervention necessary.   But the real and the most critical healing happened in my heart and head!  There will come a time in every single person’s life that healing slows or quits happening because of age, or disease or an accident.  Fighting and struggling to hold on to something that is guaranteed will happen to all of us is really just kind of ridiculous!  But a whole lot of people have figured out how scared we are to die and they are making a bloody (no pun intended) fortune off our fears! 

Healing is accepting reality and being prepared for it and that is going to look different for each of us.  For some it may be being at peace with the concept of life after death, for others, it might be living in the now and for even others, it is going to mean fighting and hope that a miracle will happen and they will continue the life they knew. 

I have no claim on what it is for others, nor do I expect others to agree with or accept my life decisions.  All I know for certain is that when I became comfortable with death I was healed from most of the fear. Life got so much better, fun, open, forgiving, easy, important, challenging, adventurous, loving and the list goes on and on.  Real healing happens in my heart and soul and is about learning, accepting and being comfortable with the fact that life has limits, but death does not.  Keeping our hands tightly gripped on what we think we know keeps us from opening them to accept all of the amazing gifts available to us!  It really is much easier than most of us think it is!

                "You Had Time" Ani DiFranko

Wednesday, April 25, 2018

Flat Squirrels

Long ago and far away…. I had an accountant!  There was a time in my life that I had a need and I could afford an accountant….at the same time!  I know…I know…astonishing but true!  Although he taught me so much about money and business the advice that I will cherish for the rest of my life was his scolding me when I was dragging my feet about making a business decision.   Every time I feel myself procrastinating I can hear his voice in my head “Cheryl…not making a decision…IS MAKING A DECISION”. I had really never thought of my stalling as doing anything more than just plain “NOT DOING ANYTHING”.  Somehow I had justified not doing anything or not making a decision as not having any consequences.  In other words, as soon as I made a decision, that decision was up for public scrutiny, criticism and open for consequences…before that I was good.  No complaints, no judgment, no consequences are what came along with no decision. But he was right and I was oh so wrong!!! There comes a time when decisions, right, wrong or indifferent must be made.  And holy crap how I still hate that and flat squirrels.
"Can't Rush Your Healing"  Trevor Hall

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