Fandango Questions via Sparks

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https://fivedotoh.com/2020/05/23/one-more-award/

https://fivedotoh.com/2020/05/21/irresistible-questions/

As you may or may not know, I’m a big fan of SparksFromACombustibleMind.  Internet friends, she allows me to be neglectful, and only show up when I’m mostly a functioning adult.  We’re friends over on the facebook place, too, so we’re in contact even when I’m being moody and don’t feel like talking at all.

I tell you all that to tell you this, I tuned in today after months of neglect, spent some time perusing the various blogs (with a nod to Marilyn Armstrong’s pets, as originally queried by Sparks), and that landed us here:

https://wordpress.com/read/feeds/58053187/posts/2719734580

So, in lieu of actually talking to anyone (that will be a separate blog, later), I’m here to answer Sparks latest questions via Fandango’s post.  Here goes:

1. Okay, you write a blog, so do you also play word games of any kind?  Yes.  Scrabble.  Words with Friends.  Boggle.  Anything with words works for me.

2. Do you have any other type of creative outlet besides writing?  Yes, although those juices have dried up as of late with the cancellation of all of our shows for the year.  Mostly, I draw, paint, make jewelry, take pictures and garden.  With ADHD, I’ve got started projects all over the house, and it’s driving the houseguest crazy to the point where my inability to do just one thing from start to finish is now irritating me, too.

3. Do you listen to anything while you write or does it need to be quiet?  Must have noise.  Right now, I have “The Song of Bernadette” on the TV for company.  Can’t stand it to be quiet, as I can hear myself breathe (think Darth Vader) and every little quiet noise gets on my nerves.

4. Are you an avid book reader?  Used to be.  As of right now, can’t read much due to eye strain / diabetes, so I’ve mostly switched over to audio books.  As I run through all my favorite new authors, I’m revisiting childhood favorites such as Anne McCaffrey’s Dragonsinger series.

5. Name a country you would love to visit if the world wasn’t shut down because of the virus.  Any place warm and happy.  I loved Australia / the Great Barrier Reef, and I’d love to be able to visit there again (pipe dream).  Otherwise, I’d like to go to Fiji or American Samoa.  I’m always happiest on a sunny beach with pristine water.

6. Have you ever written a poem about someone and gave it to them?  No.  Poetry isn’t really my thing due to dyslexia.  If I can hear a poem I can enjoy it, but my ability to enjoy written poetry is very small.  Something as simple as, “I smell the sea, and the sea smells me” (which we all sang as we were getting closer to Cape Cod’s beaches in the Summer, LOL) is about my compositional limit.

7. Is there an author (living or dead) that you would love to sit down and talk to for an hour?  Oh, so many.  Zane Grey.  Patricia Briggs.  Charlaine Harris.  Laurell K Hamilton.  Stephen King.  Dean Koontz.

8. Have you ever met a fellow blogger or interacted off WordPress?   Yes.  Although it’s hard to get over my shyness, I do try.  Facing your own hangups is something we all must get over.  Regardless of the stress / nerves.

9. Cake or pie?  Pie.  Chocolate Pudding with whipped cream.

10. Coffee or tea?  Neither.  They both taste like dirt to me.

11. What is the strangest movie you have ever seen?  Oh, so many !  The ultimate worst is somewhere among, “The Man Who Fell to Earth”, “The Groove Tube” and “Last Tango in Paris”.  The Man Who Fell to Earth was fascinating, but apparently I was one of only 45,000 people in the world who thought so.  The Grove Tube was a huge embarassment and a mistake (we were supposed to be seeing a double feature, Butch Cassidy and the Sundance Kid plus Spies, and they substituted the raunchiest movie I’ve ever seen – never mind seeing it WITH MY MOTHER – The Grove Tube, and 46 years after the fact, I’m still scarred.  It was hysterically funny and gross, but so explicit for my 14 year old brain to handle WITH MY MOTHER of all people, never mind the fact that it was my treat!).  As for Last Tango, it was a dare, and I thought it was a complete waste, although Marlon Brando and the butter scene scarred me for life.

12.  What lessons have you learnt from C-19?  People are crazy.  And I’m related to what feels like half of the craziest.

13. What values do you live by?  Come as you are.  Do no harm.  Don’t tease others.  Help where you can.  Kindness and good intentions fill in a lot of gaps when you mess up.

14. What is your favorite movie?  It would have to be JAWS.  Incredible score.  Perfect setting for Summer fare.  A bit of a thriller.  I can watch it again and again and see something new.

15. Whom have you loved unconditionally?  If not for my Mom, I don’t think I have. I care for / love lots of people, but boy am I judgy !

16.  Your dreams in life?  I don’t know if I dreamed much of anything.  I was more about escaping what I had.  It’s turned out ok overall.

17.   Do you like citrus flavoring?  Not really.  Does Lime Jello count?  I like lemon cookies, too.  But that’s about it.  Oh, unless you count the pineapple I use when making teriyaki chicken.  Found a new recipe for making BBQ chicken by cooking it in a watermelon (which I also dislike), but since the Teriyaki chicken is so delicious with pineapple juice, I think I’m going to be foolish and try cooking the watermelon BBQ chicken later this week.

18.   What is your remedy for the hiccups?  To stop talking and exercise my diaphragm muscles.

19.   Are you lucky?  My friends say I am when we’re in the casino.  I really don’t know, as I budget to lose.  To me, luck involves lots and lots of money to have lots and lots of adventures.  Since that’s not my life (I spend all the money I’ve been fortunate enough to win), I’d have to say that I do ok and it comes out about 50-50 for win or lose at games of chance.

20.   Barefoot or wearing something on your feet?  Never barefoot.  I even wear swim shoes !

 

 

Outward Appearances

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I began writing this a year ago November, 2018, at the start of my frustration with Fall every year.  It’s become more relevant as we’re now in Spring and dealing with the worldwide pandemic in 2020, so I’ll clean this blog up and release it to the world and we will see if it makes any sense or is just more purging of crap from between my ears.

At the time I began composing this, I was at that point in the Fall / Winter where I couldn’t seem to get out of my own way.  Choking regularly was driving me crazy, and it was especially aggravating when lying down to sleep.

While I still have that problem, the new one – let’s call it the “whistle” – has been added wherein I am waking myself up because I’m struggling to breathe and have developed a “whistle” noise on my exhales that is high pitched enough to get on my last nerve.  It’s not enough that I cut down the trees in the front yard to keep the birds from nesting near my bedroom window and waking me up in Summer.  Nope, now I’m my own bird bringing my own birdy noise with me wherever I may go.  Oh, joy !

Being in the middle of a pandemic, I’m still in the middle of the whole meaning of life thought process, and the fact that I “appear” to be too well to elect euthanasia, yet I have the functional lungs of an 81 year old.  (I know that label sounds silly, but it was on one of my test results, LOL).

At the time I wrote this, I was meeting with my Endocrinologist the prior day, and I was again teary eyed trying to express myself, as this process of living with multiple challenging conditions was and is on my last nerve.  I believe I am healthier 60 lbs over weight, and I think my history tells the truth of that as I put on the weight in Massachusetts and started to have more stable health without hospital runs, and that same factor continued once I moved to California and enjoyed a new lease on life due to the dryer air and lack of routine moisture or change of seasons to help me retain stable health (for me).

I have so many things going on medically that I just don’t give a damn.  I mean – I do care.  Don’t get me wrong, I’m not suicidal, so I do try and stay as well as I am able.  But…  It’s just so much uphill work.  So, this insistence from my Endocrinologist that I lose weight is frustrating and scary to me, as I’ve also watched my Mom battle this disease and lose 35 lbs in 9 days from the struggle to breathe while hospitalized.

Add in the constant choking from congestion, and the nose bleeds from trying to resolve the congestion as my body REALLY doesn’t like the over-the-counter decongestant choices available, and I’m back to being tired.  All. The. Time.  TIRED.

We tried to do a beginner plant walk in the Fall.  Since they invited kids, I thought it would be a gradual climb to 500 feet due to the “beginner” label.

No such luck.  I was tired.  My legs were both stiff from physical therapy sessions following the car accident and like rubber due to zero energy reserves.  And I had to turn back before we’d gone a mile because the hike was straight up hill.  Beginner plant ID efforts – yes.  Beginner walking or hiking on an easy slope – no.

I hate getting all ready to go and having to turn back.  Never mind having an audience to contrast just how physically incapable I am once the blinders and distractions are removed.  I am competitive, even though I know it’s a nonsense effort as we aren’t starting from the same playing field.  I may accept that fact in the front of my brain, and change my efforts accordingly, but when the evidence stares me in the face that I can’t keep up with my friends and peers, it loosens a crazy woman in me, and I hate it.

Absolutely hate it.

I am way too competitive to give in easily when I decide to do something.  I hate my body failing me.  Failing in its duty.  Failing in what should be its general abilities.

But I hate it more when I’m exhausted, and every effort to get some sleep is hampered by choking on phlegm, and having to calm myself or move to a chair to sleep and still be able to breathe without choking.

Which brings me to today’s topic.  Euthanasia.  Again.

As I go through life, hiding my COPD and trying to fill my days with activities that keep me involved in life and give me something hopeful to focus on, I have other friends who are dealing with their own heath issues and fighting to live every day, despite the reality staring them in their faces.

One friend, in her late 80’s, is fighting cancer and trying to continue with her infusion therapy despite coming down with a bad case of cellulitis in her leg.  She can’t walk.  The leg is swollen.  She’s in extreme pain.  But, she’s also terrified that the hospital will stop her cancer infusion treatments, leaving the cancer to again take hold of her body and very painful back and end her life.

Even in extreme pain, she’s looking for a way to survive despite the challenges.  Despite the reality that we never get enough time.  The pandemic has her running scared, frightened that she’s too ill to be allowed into the hospital setting to continue her infusion treatments.  And, being competitive, too, while also fighting for independence despite her frailty.

Part of our conversation when we talked centered around our very different health challenges, and ages, as well as our very different choices in life for how to prepare for the inevitable.   K was telling me that her husband was preparing dinner in the other room, as she could barely walk, and she was frustrated because she couldn’t be as “cheerful” as me.  Seriously?

We had a good gallows humor laugh over that, and exchanged horror stories about how we’d poorly treated the people in our lives at various points (in my case, it was me exhausted after a night of very little sleep and being awoken by the squeaking of the kitchen faucet (worse than nails on a chalkboard to my noise-sensitive ears).  Rolling out of bed after being awoken by the noise, I was up and screaming at the houseguest to quit turning the kitchen faucet on and off while trying to do the dishes when I wasn’t even up for the day – she can’t simply leave the water on so that it’s hot and rinse the dishes, she’d rather rinse them one at a time, conserving the freezing cold water and NOT getting them cleaned).

See?  everyone has their petty moments, and we know some of mine as I’ll admit them in this blog from time to time.  At any rate, in talking to K, I remarked that I’d had 60 years to figure out all my flaws and to practice social distancing so that the ugly side of my personality wasn’t on parade when I wasn’t at my best, and that she has to cut herself some slack and simply try to be nicer next time as she was still new at this game, only having had the cancer diagnosis for a few years.

Yes, it’s gallows humor, but the honesty helps us figure out how to get along when we are not at our best, and the world is on our last nerve…

Success.  Happiness.  Motivation.  Resilience.  All of these things are topics that each of us have to drive from within ourselves, based on the choices that we make for how we want to be in the world despite the challenges that have been handed to each of us.

Whether we have children.  Whether or not we get married.  Entitlement.  Levels of expectation from friendships or family units.  On and on and on…

As I sit here with incontinence issues due to the diabetes medication and the pints and pints of water I’m drinking to stay hydrated (between 70 oz and 110 oz on an average day, or 5 pints), I’m losing patience with the sheer work involved in living.

I go traveling and try to find things to keep me distracted and content, but when I can’t find an open bathroom and have to pee every hour on the hour, it gets old.

When the latest medication, Jardiance, is dehydrating me so that I’m drinking lots and lots of water all day long including before bedtime, I’m out of patience.  I’m exhausted and cranky, despite my outward moments of success.  I was already operated on once to help control my muscles and keep me from peeing myself.

I remember that surgery vividly, as I was about 5 years old, and they tied me to the bed for days to keep me from pulling the catheter out, it was so aggravating.  So, more surgery to repair yet another aggravation?  No way.  My cousin, T, may be considering it, as the incontinence problem runs in the women in our family…  However, this is the same woman who has had 21+ surgeries on her leg to keep from losing it due to infections and bone disintegration following a broken ankle in 2009.  I’m just not that kind of medical warrior.

At this point, I’m up multiple times a night to pee, AND I’m finding that I didn’t always move fast enough (thank heavens for pads!) so I have to change my underwear and PJ bottoms on a regular basis in the middle of the night.  The pain / frozen small of my back makes it particularly challenging to move quickly after last years car accident, adding yet another joy to my evening routine when battling a full bladder.  Trust me, ain’t nobody got enough time for this kind of drama and laundry !

So, I tell you all that to tell you this.  I’m pretty good at hiding my illness and keeping up outward appearances to give the facsimile of being well.  Until you have a competitive houseguest who is watching every thing you do or don’t do and keeping score…  Until you can’t find a bathroom when out and about because all restaurants and most stores are closed.

I’m pretty good at giving the appearance of being out and about and active, until plants remain in my yard for days at a time because my energy was wiped out by the sheer act of shopping, or while plant thieving, and I have zero energy left over to actually get them into the ground in a timely manner within a day or two.

I’m pretty good at giving the appearance of ability, until boxes moved onto my porch or into my driveway for sorting through and disposal / recycling / donation remain there for months at a time, giving lie to my outward appearances by not being addressed in a timely manner.

Nobody wants to be seen as “less”.  Less capable.  Less active.  Less able.  Less independent.

So, I’ll keep lying my head off through my outward appearance of passing for normal, and hope that no one will look behind the curtain to see just how exhausted I am trying to keep up most of my outward abilities to pass for normal and capable.

Hope on the horizon?

Jo Quanrantine 2020

The houseguest has a lead on subsidized housing, and an interview on June 9th.  Please, please, please – for anyone who believes in some type of higher power – I’d appreciate prayers to all the Gods or powers-that-be to help her get chosen for this apartment and OUT OF MY HOME !

I will continue to house her as long as necessary, but the longer this shelter-in-place goes on, the more the friction increases…

Since everything I have to say involves b*tching and moaning for the most part, I’ll continue to keep my distance from blogging as I am on my very last nerve.

I hope you’re all staying healthy and sheltering-in-place in comfort.

“Womanly” potential

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After “Quincineara Beat Down“, you can see that I’m struggling with a topic, and still trying to find a way to say EXACTLY what I mean.

At this point, I’m still struggling with my lack of sexual activity.  Part of it is due to my underlying illness, and part of it is due to family obligations where my partner is raising his foster son (again), and being the primary caregiver for his 80-year-old Mother. It’s a long and complicated story, but it’s sufficient to say that I’m not getting any and it’s ok.

But, just because I’m not getting busy with anyone does not mean that I am blind to the reality that women are facing today – the fact that we must be “feminine” and “womanly” before we’re anything else.

That focus on womanliness has been the bane of my existence because I’m not a girly girl.

In fact, if you’d asked me, I’m more like Mr. Spock on a good day, with everything being analyzed, especially intimacy and sexual issues.

For me, the need to don war paint, wear “feminine” clothing, and otherwise be anything but what I choose to be on any given day just feels like a fraud.  Why aren’t I good enough, just as I am, straight out of the package?  Why must I be dressed up and focusing on my appearance 24 x 7 x 365 in order to be “womanly”?

No answers here, but it’s still lingering in the back of my brain as the liver doctor wants me to see a nutritionist (which appears to be code for bariatric surgery), and I want nothing to do with that request if it involves surgery, or if it means I’m going to lose weight.

My weight is part of my wellness program (moving to CA 33 years ago and putting on 60 pounds happens to be choices that allowed me to live much longer than expected, AND stay out of the hospital).

 

Diplomacy challenged.

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I belong to the MyCOPDteam website, which is a support group for people battling COPD and trying to find resources in fighting this crazy disease.

I say COPD is crazy because even the so called “experts” on the disease – the docs, respiratory specialists and patients themselves – can’t all agree on it’s causes, triggers, definitions, etc., etc., etc.; making for a rollercoaster ride of things to consider and try in order to remain healthy on a case-by-case basis.

Into these care and treatment considerations come the various personalities of the patients and their caregivers and loved ones, willy nilly, with very little opportunity to filter in or out anyone who may be unhealthy for your individual state of mind.

There are key issues to be addressed with any chronic health issue, but the most important questions don’t get addressed until much further in the online support community, long after you have emotionally engaged with an internet friend or foe and their health outcomes.

Being a crabby New Englander, I was taught that a friend, no matter how boon a companion in real life, is still an “acquaintenance” until you’ve known them and been friendly for at least five (5) to ten (10) years.  What then are the rules for boundary management in internet life?

The reasons for the 5-10 year minimum getting-to-know-you period or reasonable limit is because people lie.  Or prevaricate.  Or put on one personality in public, but may actually be a whole other soul-sucking personality over time.  Until you’ve been in the trenches with someone, you don’t know who they are, but rather have bought a bill of goods they are selling you about their personality.

Into this picture comes the art of real life vs. internet life, and how well one manages the graces and decorum in the troll-filled universe we sometimes inhabit in the internet determines in a big way whether or not one is a fan of spontaneous interaction.  With strangers.  And their relatives.

I’ve done pretty well in the 1:1 world of Better Breather Classes.  I am who I am, and I participate fully.  Take me or leave me, but you won’t say you didn’t “notice me”.  And, we all have an unstated but clearly understood rule about manners and communication and kindness.  When in doubt – don’t say it, don’t do it – keep things running smoothly and ensure everything is non-confrontational and polite.  Everyone handles their chronic illnesses differently, and it’s not my business to police your interactions with others.  There is no “right” way to handle how you deal with your illness aggravations and vulnerability as you age.

I’ve also done pretty well in the world of internet dating, breaking through the safety wall to meet and date (or drop) the object of my potential lust and affections.  Because of the boundaries I created to protect my real world identity, few people got to be facebook-level friends  as my answer was always, “No.  You have my contact info on this (other) site.  Until we meet in the real world and decide that we know what we want from each other in terms of public behavior and manners, we’re fine staying friends on this (other) site and not on facebook.  There is no “right” way to handle how you deal with your love life and carnal desires, but I draw the line at starring in an episode of “Cheaters”, or of having your relationship drama rain all over the people in your life – online or in the real world.

So, with these experiences in mind, as I’m dealing with the bleed-thru of the MyCOPDteam friendly acquaintenances and their connections into facebook, I’m finding more things are getting on my nerves.

First, I’m not religious, so the whole “Prayer Warriors, I need your help” demand as a constant background battle cry is exhausting.

Second, we don’t all deal with the inevitable complications and end of life decisions the same way, so my diplomacy is being stretched thin as I go on facebook at all hours of the day and night, unprepared to deal with what can be endless drama in my otherwise lighthearted facebook experience by people who are chronically ill and showing their chronic illness panties – intentionally or otherwise – for all the world to see and remark upon.

Unless it’s siloed among my own family and extended family members – a place where it’s much easier to identify the landmines and avoid them through years of real-world exposure – I don’t wanna know.

 

Squirrel !

Squirrel

I have the attention span of a flea.

Could be my historic ADHD, or it could be that I am no longer tied to a fixed time table, allowing my messy tendencies to take over my life.  Whatever it is, I’m currently:

– Cooking a pulled pork meal in the slow cooker

– Cleaning the cat’s room

– Writing this blog

– Taking a nap (seriously)

– Trying to publicize our upcoming shows

– Trying to update our website

– Calling a friend to see if she wants to go for a walk by the shoreline on Sunday

I can never do just one thing.  Never.

Meanwhile, I was supposed to get out of bed, tag some jewelry, and deliver it to our store in Salinas.  Yep.  Squirrel !  That so didn’t happen today.

Now, it’s many hours later.

– The pulled pork is done and made eight (8) different meals (I love the freezer – so much less waste).

– I just finished changing the cat’s water and replenishing the kibble (she got pork drippings earlier for dinner – I know, I’m a bad cat parent feeding her people food)

– I’ve had at least two (2) naps, as my ankles are horribly swollen since it was in the 80’s today

– The website didn’t get updated

– The original blog post that caused this stream of thought, a brilliant blog about dealing with Anxiety, never got pimped (until now, even though I’ve completely lost my train of thought about why it was so good).

– And, I’m about to sit down and make some more jewelry as I’ll be heading to Salinas tomorrow, if all goes well.  One can never tell what my reality will be vs. what I plan for it to be the night before.  Squirrel !

 

Spoons

I can’t tell if I’m lazy or tired.  I can’t tell if I’m the source of the problem, or if forces beyond my control are holding me back and limiting me.

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Every day, it’s a challenge of positive thinking and trying vs. very real exhaustion and pain, plus limited financial resources.

Today’s the day my 2016 taxes were supposed to be done in order to comply with the law and get my refund.

Well, I missed that deadline.  Despite working on my  taxes with great intent since December.

…Is it my old nemesis, Laziness?

…Is it my “You’re not the boss of me!” reactionary thinking?

Today’s spoon theory above is contrasting with the, “Achievers do this” meme, below:

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While I know I’m willing to embrace change and fail in order to make progress in my life, I’m finding I have zip for “staying power”.  While I do accept full responsibility for my behavior, what does that mean in the bigger picture of my exhaustion causing me very real dollars in terms of handling my responsibilities?

No idea at this point, but since I’m sitting here writing a blog instead of getting on with life, I’m voting for some sort of laziness and ennui bolstering my very real exhaustion as demonstrated by the spoon theory / battery life poster:

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When you’re on vacation, there are distractions to keep your adrenaline pumping and driving you to keep up.  At home?  When I’m chilled and trying to find my motivation?  Nope.

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Today has now become a new chance to clean up an old mess or failure.