Caregiving. A necessary evil.

You can call me “autocratic”.

I prefer to think of myself as “independent”.

As I wrote about in an earlier post, “Send me no flowers“, being unwell is hard enough without giving hostages to fate.

I’m more like that Sandra Dennis character in the original 60’s film, “Sweet November”.  I enjoy the company of others.  I have long term relationships.  But I like to shut the door and exist in my own space at the end of the day, without the need for diplomacy or other compromises that are the part of daily living when one is part of a couple, or part of a same-household “family”.


To be the person requiring care, one must surrender some level of autonomy in exchange for the sacrifices of the caregiver.  Usually.

I say, “usually”, because it’s absolutely true when sharing a household with someone requiring assistance.  I did that with my Mother, moving into her home ~3,000 miles from here, because she made it easy for me to help her.  Easy for me to respect her final wishes in her last year of life.  Sometimes, however, despite everyone’s best intentions, a compromise cannot be reached, and the household must break up.

In my case, I pulled my Auntie out of FL for her own good, after 3 failed suicide attempts, because I thought she’d do better with me than on her own or at the mercy of the State.  I first met with her eldercare lawyer, and he agreed that bringing her back to CA was a viable alternative to staying in State and applying for Guardianship (which he agreed he would not fight).  This was 5 years after my Mother had died, and during a time when my brother had been diagnosed with brain cancer, and at a time when I was just coming out of the fog of being a caregiver.

I had just returned from a quick trip to China before the first suicide attempt, and did not yet know that the China trip would have lasting impact on my own COPD quality of life between then and now.

Being a long-distance caregiver for my Auntie, who has since been diagnosed with “Frontotemporal Lobe Damage”, I was in the trenches for dealing with someone who was angry at the world, angry at their own body’s failings, and railing against fate.

Through my mother, I had it impressed upon me that, regardless of one’s good intentions, it takes two in order to have a healthy caregiving relationship.

With Auntie (her sister) ours could not be healthy in close quarters, as Auntie has a type of impairment that causes the breakdown of social conditioning, and pits us against each other in terms of tit for tat warfare in the home.

So, after our 5,000th fight over dogs pooping and peeing in our new apartment, and the geriatric care manager’s decree (along with that of social services) that she move to her own place or be institutionalized, she ran away to Las Vegas with help from other elderly friends.  Our relationship managed to survive, and I continue to check on her as a long-distance caregiver about every 3 months or so with in-person visits, and otherwise monitor what’s going on via the computer / facebook / the phone.  When the State comes for her again (as happened in FL), I won’t intervene.  She needs more help than I or anyone can provide as her personality deteriorates.

Having survived a year of caregiving with a difficult loved one, I want none of it for myself.  I plan to willingly enter an institutional setting, or act upon my rights under the “Death with Dignity” law now available in California, but I will not willingly enter a hostage situation for caregiving in exchange for love.  I don’t want to be a live-in girlfriend or a wife.

Despite a very healthy ego, even I don’t love myself so much that I would willingly sacrifice another to my own needs. I know I’m just not that nice when I’m having a difficult day, or am in the midst of a pity party for myself. Honesty about one’s own failings and shortcomings is a must if one is going to deal with aging in place realisticly.

I also had a mostly reasonable upbringing, despite spending most of the first 5 years of my life in and out of hospitals due to health issues.  Luckily, I still enjoy hospitals.  I look upon them as hotels, and have no fear of being in one.  Fear of the expense and the myriad of paperwork involved to pay for such care?  Absolutely.  Fear of the care?  No.

This is a clarification of the unmarried stream of thought segment I included in another blog for why I remain unmarried, as well as an explanation as to why I think caregiving is the hardest thing anyone can do, but especially when they can’t walk away from the person they are caring for as it’s family and not simply a job.

Caregiving as a profession is one of the hardest things anyone chooses to do to make a living, and I thank them every day that they are on the clock.  Having done the job, I appreciate being in a position to have outsiders impose time limits on how much each day professional caregivers spend caregiving so that they aren’t overwhelmed.

It’s a special person that becomes a professional caregiver, usually, and I look forward to the tender mercies of whomever comes to aid me at the end in hospice care if I’m not successful in going peacefully in my sleep before we reach that part of my life.

Caregiver stress





Heresy. Heretic. Hubris?


And, even if you do have a vagina, you only get to say what happens to your own.

Despite being raised Catholic, I am agnostic.  I think George Clooney said it best for me, even though my opinion was formed long before I found this particular meme:


While I am not of a particularly religious bent, a lot of my family and friends were raised in the church, accept its doctrine, and we have to agree to disagree on topics or we couldn’t be friends anymore due to the disrespect evidenced by the refusal to accept my right to my opinion.

I value my friends in all their levels of complexity and differing outlooks on life, and I don’t want to try and force them to be like me, or make them feel they must try to be something they are not in order for our friendship to survive.

That being said, though, it is not always true in the reverse.  I have to cut my friends a lot of slack when they start to “educate” me about their religious views.  Especially when they seem to forget we were raised in the same church.  They forget I’m not one to be “got” for Jesus.  I left the church as soon as I could, following my confirmation at 14, and once I was legally an adult in the eyes of the church.

The best explanation of what kind of conversation I plan to have with our maker, should I be proven wrong, and he or she exist, goes something like this:


Epicurus has rationalized a circular argument in the picture above, but it’s truly how I feel on this issue.

For me, if there is a supreme being, he or she has quite a lot of ‘splainin to do.

From my own experience in being indoctrinated in the Catholic faith, while also having members of my family be raised as Jews or Protestants, we learned to shelve the need to “get one for Jesus” in family discussions, as arguing about which religion was “most” right was pointless in a multi-religion household.  Religious support or tolerance, and managing the boundaries to avoid conflict as provoked by dogmatic viewpoints was the norm in my household.  However, I was exposed to three clear lines of thought on the religions involved, and I’ll paraphrase them as follows:

In the Jewish faith, they praise the questioners, as only by knowing ourselves and our belief, do we have a chance to know God.

Within the Protestant faith, there’s a lot of reliance placed on acceptance of the divine mystery.  The trust that all things will work out because “God has a plan”, even if we are too ignorant to be able to comprehend it in all its complexity and glory.  Some of our individual sects are part of the holly roller/get one for Jesus coalition, and some are more live-and-let-live.

Regaring my experience with the Catholic faith, there’s a wide variety of viewpoints, depending on whether one is a high holiday church goer (mostly visible at church on Christmas, Easter, etc.), or if one believes that the Pope is the living embodiment of God’s word on this earthly plane (i.e., those members are usually identified as Roman Catholics, send their kids to parochial school, know every saint’s day and holy observance on a weekly basis, are members of the John Birch society, etc.).

So, there’s a lot going on in my extended family, and I was raised to respect the boundaries as blood was thicker than any religious dogma for getting along and thriving as a cohesive team.

Into this picture comes the 2016 election nonsense, and facebook.  (You knew it was going there, right?).

I’ve been posting a lot of supportive items that members of my family and friends disagree with, but we manage the boundaries respectfully, as the postings are not directed to anyone specifically.  There’s no bullying.  It’s more a general rah-rah for my team’s views as we’re working through the political process to see who in a position of political authority is going to be steering the country over the next 4 years or so as it comes to public policies, and the laws which affect our individual rights.

Into this arena comes the private messaging, and the need for people to cross the line with conversations that they don’t have the balls to post on my facebook wall.

Two recent abortion-centric discussions have been had privately, and I’m about to lose a friendship of 40-plus years if the other person doesn’t knock it off.  All because of private messaging and what I see as disrespect or bullying.

Whether my opinion is heresy, the work of a heretic, or hubris, it’s still my opinion.  Opinions are vital to interesting conversations.  However, when one cries, “uncle” to stop the attack against an opinion, the courteous will back off.

Not change their own view.

But, simply, to agree to disagree.  It’s called mutual respect.  A friendship can’t survive without it.





Pro-choice kills friendship?

This is going to be a messy one as it’s a document in support of another post:  Heretic.  Heresy.  Hubris?

To recap:  I am starting to hate Private Messenger on facebook as people will say stuff in private that they’d never have the balls to say face to face, or over the phone, or publicly via a posting to my fb wall.

The name has been hidden of the other correspondent, as – whether the relationship lives or dies – this is my pet peeve and I have no wish to out her for interference by others who aren’t involved in this conversation.

Feel free to add your 2 cents below if you wish to cast a vote for who is out of line (it could be me – maybe I’m being too sensitive).






The conversation begins privately, based on something I’ve posted in support of Planned Parenthood, and for which the other party won’t accept, “Stop.  Let’s agree to disagree.” as a genuine compromise.

I feel attacked, like I’m dealing with a religious sniper.






Meanwhile, I tried to get her on the phone, as she kept on in this passive-aggressive vein, and I couldn’t get her to stop.  It’s funny, but she claims to have “not recognized” my phone number, even though I believe I’m the only one she knows in this area code ~3,000 miles from where we grew up.  (Sigh)



Didn’t get an answer and then the conversation moved on through time to discuss Boston and the Oscar-nominated movie, “Spotlight”:






Then, it starts to get to the point where I’m offended as she cites her traning as a biologist (even though she works as an Admin and has never used her college degree in the field for which she’s trained) for why she’s right and I’m wrong.






I’m not sure our friendship will survive if she keeps disrespecting the opinion boundaries and trying to make it personal.

Luckily, after 15+ days circling around and debating this issue, she’s once again gone silent.  That may have much to do with the 3 hour time difference between us, but I’m grateful for anything that stops the drama.

Mental meanderings.

Mikes final ride June 2011

For whatever reason, I decided to wipe out all 5,000+ pictures on my iPad, downloading them to my laptop for safekeeping.

But, then I decided that I wanted to have “some” pictures on my iPad, especially when it turned out that the jeweler misplaced my rings, and I needed an image to show him in order to help him find them.

So, in reorganizing, I found pictures of me and my big brother, and his funeral.  How macabre is it to keep pictures from someone’s funeral?  I don’t know how to explain it, but it was so over the top, I couldn’t do anything else.  My mother would have loved the pageantry, being a big fan of the funeral procession in, “An Imitation of Life”.  It would have killed her to bury him before her, so I’m ok with how it all came together for her to have passed first.  But, I’m still certain she would have enjoyed it if it weren’t a funeral for her eldest child.

My big brother, though, is frozen in my memory somewhere among various photos, even if he’s maybe 17 on a good day in my brain.  I cycle back and forth among this one:  (about 1963)

Mike and Jo - 1963 maybe

or this one:  (about 1970-1971) when he rode his 10-speed bike 90 miles, from MA to NH, to get to my Grandparent’s camp for the weekend:


or this one:  (about 1990)


[There’s more, with my Baby Sis, but if she ever sees this blog she’ll kill me, so I am leaving those pictures unpublished.  She’s very sensitive about images].

Anyway, I’m rebuilding the pictures in the iPad of just the important ones, and I always carry a few of my family with me now that I have the iPad.  There’s no particular reason why, but it’s helpful when Auntie forgets having met certain people in the family, or doesn’t recall past events.  I also just like to see them from time to time while I’m out and about.

So, as I’m preparing for vacation, I’m very aware that my Big Brother would have been 58 this week.

I think about how much time has passed since brain cancer took him in 2011, and I know he would be happy with how things are turning out with his family despite the passage of time.

He has two sons, fine young men, and they both appear to be building lives that will see them through to a happy old age with kids of their own.  His widow, my sister-in-law, appears to have a full and busy life, while also pining for the life that they planned together.  No answers there, except the obvious one:

– 53 is too young to go.

There’s never a good time to go, of course, but my brother appeared to have used his time well on this earth, and I hope I’m living up to his example as I continue to do the same with the choices I make and the options available to me.

I’m off for another cruise at the end of the week, and I’m looking forward to spending time with my Nevada Auntie who is suffering from both frontotemporal lobe damage (a form of dementia or alzheimers), as well as COPD and a failed back (arachnoiditis).


While the trip may have its challenging moments, I can assure you that she has NOT lost her ability to use language.  I’m hoping that traveling with my cousin and me, she can get out of her disease-imposed inertia and enjoy herself for at least a little bit.  From my point of view, her disease steals her initiative.  So, I go see her about every 3 months or so to both give her something to look forward to, as well as to monitor what’s going on, and try and help her beat back the drum of passing time and increasing debility .

There are many ways to describe Auntie’s particular mental health ailment, the closest thing that they described it as is a form of dementia or Alzheimer’s, even though the official description is clear to say that it’s not the same thing at all.

For lack of a better description, though, or better resources for how to manage her care while traveling, Alzheimer’s is the easiest label for handling her personality difficulties and inconsistencies in responses as her executive functioning has its particular dead zones.

If you haven’t seen the Glen Campbell film, “I’ll be me”, and are dealing with someone with Alzheimers, I do recommend that you try and watch it if you can bring yourself to do so.  It wasn’t sad, as I had initially feared.  But, you have to be in the right head space to not have it bring you down if you’re at all susceptible to empathetic depression.


Baby Sis recommended that folks see it earlier this year, and I put it off until tonight.  Having dealt with the journey of Alzheimer’s and dementia-related issues in my Mom’s side of the family for quite a few years, I can tell you that this particular film does a great job of illustrating how easy it is for someone to pass for normal when they have truly lost their ability to manage their lives.

While blame is never part of my response to disease-related situations, I do wonder, though, if the excesses of the 70’s and 80’s in the pre-AIDs hey day is coming home to roost in the Baby Boomer generation.  Glen is known to have had quite a cocaine / drug / alcohol problem at one point in his career, and Auntie has said that she certainly had a good time with alcohol and cocaine while she and my Uncle were running their bar in Alaska.

So many people need help with keeping their loved ones active as this series of a very terrible disease takes its toll, as there just aren’t enough resources to go around.

While I’m pretty much a fatalist, in that everything happens when it will, with no rhyme or reason, I do find that things work better if we all pitch in to help each other.  I’m very thankful that my Cousin is also able to join us on this trip, as that will help with the caregiving challenges and help both of us avoiding “hovering” while also being available in the event that Auntie needs something specific while traveling with her Senior Singles Club.

Auntie was supposed to go to Italy last year, and backed out at the last moment due to anxiety for coping with public weakness / instability.  She’s in denial about how fragile she is, and how much she needs to keep on moving in order to remain as healthy as possible.  Hopefully, with my Cousin and I there, everything will go as planned and we’ll all have a good time.

Yes, it truly takes a village to see each of us through from birth to death.

Temper, temper


I have a quick temper.

Like most things in life, I’ve learned to control it, but when it flares?  Whoeeee!  Childishness results.

We have a show today (I’m a crafter on the side.  The jewelry I make is an outlet of sorts.  My business partner and I joke that it’s our therapy, to get through life without killing ourselves or anybody else along the way as we practice patience all day, every day, with our sense of injustice for whatever foolishness comes across our paths).   Anyway…  as part of preparing for our show, there’s a number of things I need to get done.  I’m the “driver”, so making sure I have a clean car and getting it loaded for each new adventure is part of the routine.

Being part of this new “leisure” lifestyle known as being on disability, though, I’m finding my temper flares more easily.  Or, I’m getting rusty at the social norms, and don’t care to put up with crap that I would have let slide, once upon a time, a long while ago…

Anyway…  back to our story.

I’m up, dressed, showered, just spent two hours with the Auntie going over travel plans, AGAIN, and getting her cruise information uploaded now that she’s finally received her replacement passport.  And hearing how her failed back disability claim was so EASY to process, again, and implying that it’s all a government plot that I’m not gettting my benefits as I should, why aren’t I panicking, etc., etc., etc.  All a very restful conversation to have… NOT… but we’re on track for our departure next week, and I’m finally hustling her off the phone, as I have things to do.

Like any good vampire, night’s coming on, so I’m ready to start my day.  And, because the rest of the world likes to get started at 8am, it’s now about 4pm, and I’ve got to hustle to beat the clock for the car wash and get to the bank before it closes.  All normal stuff.

So, I make it to the car wash, order up the service, and sit back to wait.

And wait.

… and wait.

As I’m sitting on my well-padded posterior, I’m enjoying the sun on my face and I’m watching the workers.  I start to wonder about the legal age of some of the kids, the ones that are working particularly diligently vs. another kid, college age, who is just putting in time.

I’m there for about 30 minutes, so I got to watch them moving a lot of cars through the windows, tires, drying process, and I could see Joe College was somehow immune to the hustle gene.  I’d noticed him before, during other visits, as his slow response to the job is just so out of keeping with the hardworking pace of everyone else who appears to be doing his same job.

Not sure if it’s due to his skin color being similar to the Assistant Manager’s, but if he was on my crew of multi-racial workers, he’d either have to be related to someone to still be working there, or he’d be on a remedial program to move his butt, or he’d be gone.  It’s just that simple.

You don’t let a hardworking, happy and very productive crew get unbalanced in who is doing the actual work, or you end up with bad behavior being modeled as being ok.  Then, the hardworking crew needs to be disciplined as a whole, and it’s much harder to fix if you don’t respond pro-actively to lazy butts.

Oh, and let me say that I was a hotel / motel chambermaid in my youth, lying about my age so that I could be hired, so I know hustle vs. lazy when I see it.  5-1/2 years cleaning up other people’s messes teaches you how to move efficiently.  Especially when you get paid by the room, and you can’t get to the beach that day until your 15-17 rooms are done.

So, back to Joe College.  I’m watching what appears to be a 14-15 year old boy with a skater’s “fade” haircut hustling and cleaning cars 3 times his size (he’s a small kid, kind of scrawney).  I’m watching another kid swapping out clean towels for dirty ones, running back to the laundry area to keep the shop towel timing on track.  I’m watching another couple of young guys (maybe late teens early 20’s) moving quickly and pushing the assembly line of cars through, while also playing and having fun with each other and their wet towels and squirt bottles of cleaner.

You know; working, but still having fun.

Then, there’s Joe College.  For every 3 cars Fade does, Joe’s just limping along, wandering over to get a fresh towel, spending time to fold it just so, go back to a new car to half-heartedly do the windows, and then wandering off.  No hustle.  No focus.  No results.  Seems like Fade is doing all the work, as he jumps in and finishes what Joe College leaves undone.  Doesn’t seem like he minds, either, as if this is a regular routine.

So, of course Joe College starts on my car.  Eventually.  As I see him half heartedly spritzing the interior of the windshield, I’m not impressed.  After he does a pisspoor job of doing the driver’s side, I go speak to him as I want it done right.  Streaks, when driving into the early morning sun, are maddening.  “Ok”, he says.  “Sure” he’ll do the inside windshield, twice, to ensure there are no streaks.  He fixes that part (he’s just started on the car), and then wanders off to get another fresh towel.

Fade, meanwhile, is working like a dervish on the Camaro in front and to the right of mine.

Joe College, instead of going back to my car to finish it, wanders off with his new towel toward the laundry area, where new cars are coming off the ramp needing attention.  Joe opens up the back of a landrover, and begins working on it, until another guy comes along and leaves him in the dust with his hustle on that same car.  Joe then moves on to a beamer, fresh off the washing line.

My car sits, dripping and ignored, while Fade has moved on from the now finished Camaro over to that same sporty little beamer, which came out of the shoot abou 5 cars after mine, bypassing my waiting car.

At this point, it’s been about 5-10 minutes of me watching Joe College wander, and Fade ignore my car in favor of a more recent arrival.  Seriously?

Getting up again, I go over to Joe College, now sitting in the driver’s seat of the beamer, while Fade is drying the exterior and washing the windows.

“Excuse me,” I prompt Joe, “are you done with my car?”

He looks at me, clear-eyed and clueless, and Fade jumps in to respond instead.  “Which is your car, Miss?”

“The white soul.  This young man was working on it, wandered off to get a new towel, and has now gone to two other cars in place of mine.  I’m wondering if my still dripping car is done?”

Fade looks at Joe for inspiration, who is grasping for straws and trying to think of an answer.  “Someone else will be along to finish it” he mumbles while looking away and failing to meet my eyes.  Fade then says, “I’ll get to yours next.”

Normally inoffensive words, EXCEPT, he’d finished the black camaro and moved on to the newer beamer.  It was clear that he wasn’t supposed to be specifically picking up the slack for Joe College, or he would have done my car first, as that’s the one Joe left unattended.

So, I go back and sit down.  Only to realize that now I’m stewing, and my car is still being serviced out of order due to someone else’s laziness.  I have to wait, after I’d gathered my courage to request attention?  Zero to insane in less than 60 seconds.

While I’d watched the Assistant Manager redirect cars to Fade after Joe College wandered off, there was no impairment I could see in this fashionably dressed, out of uniform young man to warrant him getting a break.  And, if you’re going to hire the handicapped, you’re going to be on them for consistency to ensure they do well in their job.  There was nothing like that in this situation, let me assure you.

Having now checked myself for unreasonable behavior, I decided to leave.  F them all and the horse they rode in on.

I got up, headed to my car to drive away, and got it partially out of its spot when I realized I left my phone behind.  Stop, park, get the phone, walk back to start up the car and leave, and suddenly the Assistant Manager is there, asking what the problem is, making me feel like a jerk for getting upset when I explained.

He’s in my face with his body language, so I wave him off and start to roll up the window, and the idiot Manager (according to the Assistant Manager, who identified his role) is wiping my car window off, and gets his towel stuck, forcing me to lower the window again.  They again want me to wait and they’ll finish my car, but it’s now too late for that.  I’m done.

I’d already given the Assistant Manager the receipt, and he now SNAPS HIS FINGERS AT ME, pointing to the instructional receipt taped to the inside of my car window.  You know, the window Joe College didn’t bother to clean before wandering off.

There’s no calming me at this point.  I’m insulted and angry (yes, over something as stupid as a car wash line) so Assistant Manager snapping his fingers at me like I was a child or a dog to respond to his commands finishes what remains of the dregs of my patience.


Clearly, I may think I’m a pretty laid back, patient person.  But I’d be wrong, as yesterday’s car wash debacle shows.  Luckily, they always vacuum before they wash, so the car isn’t as messy as it might otherwise be.  Temper, temper.


Artwork credits:  everything was readily available under a “free image” search.  If any rightful owner objects to my repurposing of their images, please just let me know. – chikd’s tempertantrum – screaming model and leopard

Awards Season

Blogger Appreciation Award


The Rules of the Award:

We don’t got no stinking rules !  (No, wait, that’s a different version of me).  So, the etiquette protocols are:

(1) Thank the blogger who nominated you, link back to his / her site.

(2) Write a paragraph of something positive about yourself.

(3) Nominate and notify as many bloggers as you wish.

(4) Use the award image.


#1   SparksFromACombustibleMind

It’s hard to recall how long Sparks and I have been communicating via the internet.  We first met on a blog site elsewhere a few years back, and her perspective on life and it’s related challenges and humor pulled me in.   Not at all wishy washy, I appreciate her willingness to share whatever’s on her mind.  The creative writing exercises are particularly escapist and fun.  I also love her stories and images about Utah, and not just because I made a mad dash through the state.  Once.  I’m absolutely going to get back there some day to actually experience the National Parks (vs. just using it as the fastest cross-country route to Massachusetts).


#2  Positive Thought About Me:

Most people think Disney’s Eeyore when they think of me.

Eeyore      Seriously.

I’ve been accused of being a Polly-anna in life (I can’t see it, and my family will assure you that I’m way too big a P-I-T-A to ever quality for that award), but if something I wrote brings you a new perspective, and you find some joy while going through all the crap that one MUST deal with each day, then my mission’s been accomplished.

Enjoy !


(3) Nominate and notify as many bloggers as you wish.

* Disclaimer: Nobody needs to feel they HAVE to participate.  I know some host “award free” blogs and that’s certainly to be respected.   But the ones who want, please do participate.   I find that so many undiscovered and excellent blogs are shared in this way.

I nominate the following bloggers, and in no particular order.  They may not publish daily, but when I have time, I check them out to see what I’m missing:

Wheezing Away

Dealing with the very reason why I’m here – to get my head around my COPD diagnosis.   I appreciate his take on the world on any given day.  Plus, I like the fact that he’s been approved for disability, and still gets up and tries to accomplish things each day.  Our failing bodies should not be our prisons, regardless of what the insurance companies and/or our former employers may think for determining when or if someone qualifies for medical disability.

COPD Athlete

Not just because he’s dealing with COPD in his own way, or because he’s from my favorite vacation country, Australia; I enjoy reading of his triumphs.  Especially on days when I’m too tired to do more than simply sit and exist.

Problems With Infinity

It was the cartoons and the boyfriend stories that first pulled me in.  I love her quirky sense of humor, and eagerly look forward to anything new she wishes to share.   Today’s take on Pancakes had me smiling, as did Decembers, “Zap Dancing for Charity“.  The illustrations just work for me.

Police Commander

I’d tried wordpress a few years back, when Sparks suggested that she was leaving our then-blogging site and moving on up to a new refuge in the hills of the internet known as “wordpress”.  Upon my first visit here, Police Commander caught my attention as we were in the midst of #BlackLivesMatter in the USA.

I think it was his post, The Loss of Innocence, that roped me in and kept me reading.  We are on the same page that violence as a whole has become more graphic, and senseless.  With every step forward we take as a global civilization, we also have to keep dealing with the mindless, numbing horrors that we hope are someday to be relegated to our uncivilized past.

The best comparison I have to why I find his stories compelling:  A Clockwork Orange was filmed in 1971, more than 45 years ago, and scared the crap out of me (almost as badly as “The Exorcist”).  Yet, we can’t seem to break the cycle of our own habits toward tribal warfare and senseless violence, despite the expanding conversation among many nations about the values of peace and peaceful co-existence.  He provides perspective from across the blue line, and I appreciate his insight.

Gaffney Coaching Blog

As with COPD Athlete, watching anyone achieve their goals is inspiring.  While I cannot cycle any longer due to my breathing difficulties, I like learning about what he has to say regarding Yoga, Stretching, Performance, and what one can do to be a better version of themselves every day.

Man Vs. Gym

Finally, I’d nominate ManVsGym (a facebook favorite), if he had a wordpress site, but he doesn’t seem to have a page.  If you want daily workout inspiration that deals with enthusiasm, being the best you can be every day, and never saying “die”, the Kevin’s Da Man.


I just realized that I have a lot of “athletic” favorites for someone who is pretty much a couch potato.  Hmmm…  Where’s Freud when ya need him?

Meanwhile, there are lots of interesting other pages that I follow, and omitting them is not meant as a slight at all.  Different things appeal to different folks, so get out there and make the most of your wordpress adventure.  You may find you’re surprised at what appeals to you.

How Do You Know?


As I’m on a journey to understand my Asthma / COPD (and whatever label they want to apply today), I’m often asked to explain my understanding of my disease.

Since the diagnosis was applied in childhood, 55 years ago following my first pectus excavatum (chest surgery to break my ribs and realign them to keep them from piercing my heart and lungs), it’s anybody’s guess as to how I got where I am today.

Unless the person I’m talking to is a medical professional assigned to my care, I tend to gloss over what happened to get me where I am today, as I just don’t want an endless list of “how do you know” questions.  This is my life, and I’m not simply studying for a test by random strangers.

So, the best thing to do to aggravate me is to presume that I’m not involved in my own therapeutic options.

Nothing is guaranteed to make me see red faster than the presumption that I’m a hypochondriac because I’m interested in my care options outside of what the doctor specifically recommends.

Because of my attendance at a “Better Breathers Club”, initiated by my own volition, I learned about chair exercises (with paper plates under my shoes to reduce friction) and it was very helpful in January when it was pouring and I felt too crappy (conjested) to get out and do the exercises that are recommended to be part of my daily routine.  (Pix credit:  Santa Clara Valley Better Breather’s Club facebook page – January 11, 2016).


Today’s class was also interesting, as we talked about the link between heart attacks and COPD, as well as how to deal with early morning congestion upon awakening.

These events are sponsored by the American Lung Association, usually run by volunteers at one’s local hospital, and run by a combination of nurses and respiratory therapy specialists.

I’m a big fan of different sources of information.  Of comparing what works, what doesn’t, and what might be possible to try, vs. simply doing what my lone doctor recommends.

That’s not a slam against any one doctor, but more of a belief that variety and fresh voices leads to the best quality of life and healthy alternatives as our understanding of best practices evolves.  These others are voices and sources of information that I might not otherwise have thought about due to lack of context and exposure to the topic as it relates to me and my experience existing in this refurbished old chassis.

I tell you all that to tell you this, though.  I am spending most damp mornings getting up, exhausted, but too tired to keep lying down and struggling to breathe.  Once I cough up a lung for the next hour to three, I begin to feel better (if still tired) because I am getting more air into my lungs.

As with the illustration below, my understanding is that the mucus builds up in the bottom of my lungs overnight.  Upon rising and moving around, sputum is produced as my lungs slowly empty out due to my once again being upright and moving to break up the congestion.


In today’s discussion with Sandy and Gail, the nurses hosting the gathering, the question was asked about how I knew I had asthma / COPD.  Frankly, I don’t.

Because my breathing issues are an offshoot of deformed ribs, which lead to crowding my lungs and multiple incidents of colds and pneumonia, the all-purpose label (and treatments) have been asthma-specific because that’s how they labeled my breathing challenges in 1961, and they’ve never found a more applicable label.

The label isn’t particularly scientific (as it was decided before genetic testing), but it’s good enough to prescribe a course of treatment that works, and give me the quality of life I currently enjoy.

However, during today’s meeting we were discussing congestion and wondering whether or not a pulmonary percussive vest would help me feel better faster, and keep my chest cleared longer.



While I had heard of manual thumping of the chests of people who have cystic fibrosis or lupus, and wondered if it would help on bad days when I couldn’t get ahead of the conjestion, I never knew there was a machine that might help them, nor that it might work for COPD relief, too.

So, my nosiness comes up with another non-drug symptom reliever, and now I start the, “What do you think?” conversation with my pulmonologist as it comes with a weighty $15,900 price tag, and a prescription is required in order to be allowed to purchase one – with or without insurance.

Anyone else reading this have experience with percussive vests for COPD congestion alleviation?





Cheating vs. Trying

Or, enduring while continuing to find a way to live vs. merely exist.


I found the attached image on the web under “free” images, with a note that it “may” be under copyright.  Alrighty then…  Since we can’t be sure, I’ll use it as a placeholder until the rightful owner objects.

Now, back to the topic at hand…

In my case, I just got in from doing the “forbidden” lawn mowing.  The weeds and scrub were about 4-6 inches long, very green and pretty, but clearly nearing the point where they had to be trimmed, or I run the risk of the weed abatement committee or the landlord fining me.

I say lawn mowing is forbidden, or ill advised, because it wipes out my energy.  EVERYTHING with COPD wipes out energy, so I’ve become like some sort of energy-gobbling crazy children’s video game, doing something and then sitting for 15 minutes to an hour until my energy reserves refill.

A typical morning includes an hour to three spent trying to clear my lungs of mucus, so that I can breathe better and have more energy to take a shower AND shave vs. just a slap dash washing of hair / rinsing of skin.  Nothing much happens, though, until I can get my breath and not sound like Darth Vader while simply sitting still.

Taking a shower?  Add 10 minutes rest.

Taking a shower and shaving my legs?  Add resting while in the shower, wasting water, plus another 30-60 minutes sitting around, “drying off”, while practicing biofeedback and deep breathing exercises.

The biggest challenge I have with the COPD diagnosis, is that it’s an invisible disability, so I can appear lazy or unmotivated, and be assumed to be “cheating” the system of benefits when I’m doing something physical like mowing the lawn.  It’s a guilt trip challenge, merely trying to live and trying to keep to a somewhat normal routine, with regular chores, despite anything but “normal” circumstances.  Sitting around “recharging” falls clearly into that “big, fat, faker” category for cheating on being “truly ill”.

No answers here, however, my 30 minutes of rest are up so now I’m headng to the YMCA to see if I can get in some necessary arm stretches on their weight lifting equipment before swimming or using the jacuzzi prior to coming home.

I could really use a nap right about now, but my goal today is to keep on trying to move despite the depleted energy reserves.  Hopefully, I’ll make it for more than 20 minutes in the pool for swimming today.


Sturm Und Drang = Silence

Helenzebcharles Too tired

The repercussions of losing my temper, as I mentioned on Tuesday, was to completely blow off Wednesday.

After NOT mailing out the hardcopy of my LTD submission in support of the soft copy uploaded to the portal, and after NOT hearing back from my boss in Germany, I’ve had it confirmed that yesterday’s antsyness was a complete exercise in pointless anxiety.

Today, however, I’m up and on a roll.

Can’t say I’m being more productive, but I’m about to hit the shower after another largely sleepless night, and move on with my day.

Decided to double the dose of my breathing medicine (the doctor told me to do it awhile back, but I hate to do it as it then stimulates me all night, keeping me up).  I will say, however, that the medicine helped me to function pretty well yesterday, even if I didn’t sleep at all last night.

So, one sore butt later (from way too much sitting and lying around), I’m off to start my day.  I just wasn’t made to sit in a house, breathing, and trying to just get through another day.


Lyrics to “Fly Like an Eagle” by Steve Miller:

Time keeps on slippin’, slippin’, slippin’
Into the future
Time keeps on slippin’, slippin’, slippin’
Into the future

I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I’m free
Oh, Lord, through the revolution

Feed the babies
Who don’t have enough to eat
Shoe the children
With no shoes on their feet
House the people
Livin’ in the street
Oh, oh, there’s a solution

I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I’m free
Fly through the revolution

Time keeps on slippin’, slippin’, slippin’
Into the future
Time keeps on slippin’, slippin’, slippin’
Into the future
Time keeps on slippin’, slippin’, slippin’
Into the future
Time keeps on slippin’, slippin’, slippin’
Into the future

I want to fly like an eagle
To the sea
Fly like an eagle
Let my spirit carry me
I want to fly like an eagle
Till I’m free
Fly through the revolution

Time keeps on slippin’, slippin’, slippin’
Into the future
Time keeps on slippin’, slippin’, slippin’
Into the future


Artwork credits: – not sure if she created it or also repurposed it, but that’s the best credits I can come up with for this very appropo drawing.  Enjoy !


Sturm und Drang = German phrase for turbulent emotions and/or stress.  Drama.