Pulmonary Paper

 

ThePulmonaryPaper

The latest issue of “The Pulmonary Paper” is ready, as shared by my favorite COPD travel agents, http://www.seapuffers.com One of these days, I’m going on an adventure with them, even if I don’t yet have the need to be on oxygen.

Summer and Fall – 2020

Of particular interest is an article by Ryan Diesem, on the various strengths and weaknesses of oxygen concentrators, and being careful about trying to buy low cost alternatives.

COPD Activism

COPD Activists

I’m going to upset my lawyer.  If he learns that I’m actually doing something.  Anything.

You're not the boss of me

However, my fight to have a full life despite my challenges prevents me from being anything other than the best that I can be.  I’ll die trying to life a full life, but I won’t sit around, lingering, waiting to die.  Just not patient enough.

And, side note:  Does anyone else find it funny that The Patient must also possess themselves of patience?  I’ve recently taken to calling myself the “individual” as I am determined to NOT be “the patient” outside of the doctor’s office or a hospital setting.

At any rate, I’ve signed up to participate in the COPD Caucus online.

It’s an attempt to find parity; to find a cure.  I’m no Super Justice Warrior (SJW, for short), as I have little patience for stupidity, never mind enough patience to have to reign in my temper and deal with stupidity in a bureaucratic setting.  Advocacy sucks to have to do, but when you have no other choice, you do what you must.  Finding parity and struggling to form alliances is more taxing than I normally force myself to be when not at work, but needs must.

Our current agenda seems pretty reasonable in terms of cohesive, and limited, goals:

Impact 2020 goals

The key challenge for me will be my lawyer’s insistence that I do nothing when contrasted with these homework tasks:

Impact 2020 Homework reminder

While I try to be a compliant client (to do otherwise feels like an episode of “Law and Order, SVU”, where failing to obey your lawyer ends up landing you in jail), it still goes against the grain to trust anyone’s agenda but my own.  Regardless of the fact that I chose this lawyer and asked for his team’s help.

 

So, I listen to what the COPD advocacy group has to say, and then get my marching orders.  Grumpy is my go-to persona in real life, but I try and be pleasant when I’m stuck in groups.  Kind of the whole, “On stage” persona I learned when working a second job at Great America, (a Disneyland or Universal Studios competitor) vs. the real me that I can be when among friends or on my own.

So, I’m going into effort this fully informed and hopeful that I will scrape through, with my lawyer none the wiser.  Here’s hope that advocacy works.

 

 

How long ?

Waiting to Die

I have some strange conversations with my friends.  This week has been about accepting mortality, and knowing when you’re “ready” to die.  Also, the frustration of dealing with co-morbidities and hospital runs, and being afraid to die.  Typical stuff.

2020 marks the 5th anniversary of my going on disability (October 1st, to be precise).  It also marks the challenges the individual (not the “patient”, as I’m only a patient when I’m actually IN a doctor’s office) faces to receive a “How long?” answer from their doctors when their particular situation won’t get better.

In my case, I went on disability after three (3) car accidents, after fighting my entire life to hide my breathing challenges and pass for normal.

While I was prepared from a philosophical aspect that I would die sooner than expected, the reality was that I’d already lived much longer than anyone ever expected (which tells you that nobody knows nothing about life expectancy, and emphasizes that there’s not a date stamp on your foot to help you come to terms with an unknown end date).  In my case the online tools gave me a life expectancy of 3-5 years based on my lung capacity and FEV1 / FVC numbers.

Telling you that I went on disability when my FEV1 at 33%, and that I’m currently at 26% doesn’t change the fact that I have survived the 3-5 year forecast, and am still going strong.

The “you don’t look disabled” comments continue (which is both aggravating, and a reassurance).  But, in reality, I’m living in a poisoned tree.  Most people sit down, expecting my tree of life to look like this:

Dying tree

My reality is that I look fine, and will hopefully continue to do so until I don’t.

Living Tree

The poison will continue to spread from the critical engine part of me – my lungs.  So telling me I don’t look sick and that I should do thus and so is really not helpful to my reality.  At this point, I’m dealing with a number of co-morbidities:

– Asthma / emphysema / COPD (breathing difficulties, regardless of the label)

Then, the breathing medications continue to cause complications:

– Arthritis

– Diabetes

– Liver issues

– Vision issues

– Pain issues

And, with my actual medications plus any change to the medications, a domino effect begins:

– high blood pressure / edema

– swollen and painful feet

– pain in my right side worsens with liver failure issues

– back pain due to last year’s car accident and existing arthritis spreading

– eye issues as my diabetes continues to attack whatever parts it can…

I won’t go into all the aggravating side effects.  As I said to another friend earlier this week, “Yes, I’m ready to go when my time comes.  That time is not today.”

We talked about how difficult it can be during the fire season, and the fact that I thought I might die over the last 2-3 years, I was struggling so hard to breathe.  Yet, here I am.  Still.

We also talked about how rare it would be for me to go in the Summer, as that’s my “best” time.  Warm days help my painful body function, and I can get out and keep busy, using the laser passions of my ADHD to focus on things other than pain while I keep busy and distract myself.

But, the fire season is upon us and I’m thankful that this year isn’t bothering me as much as it has in the past few seasons.  Despite how close the fires are, and despite how cloyingly bad the lingering air quality continues to be.

Seriously, perfume will aggravate me within a very short matter of time.  Wood smoke?  Not so much.  Maybe it’s because I grew up in a smoking household.  But, even that explanation is not the true story because I used to be able to handle the scents within a home, and now cannot.  Whatever the reason, something is going to get me.

Just not today.

Someone recommended I read, “When Breath Becomes Air“.  It’s not my story, but it has similarities to my struggle.  To paraphrase the (now deceased) author, Dr. Paul Kalanithi, and what he said in his “How Long Have I Got Left?” op ed for the New York Times way back in 2014,

“The path forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d just spend time with family. Tell me one year, I’d have a plan (write that book). Give me 10 years, I’d get back to treating diseases. The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.

I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.

The angst of facing mortality has no remedy in probability.

Seven words from Samuel Beckett, began to repeat in my head, and the seemingly impassable sea of uncertainty parted: “I can’t go on. I’ll go on.” I took a step forward, repeating the phrase over and over: “I can’t go on. I’ll go on.” And then, at some point, I was through.”

So, I have good days and bad days.  I try and set flexible goals and plan out fun activities years in advance, and I also try to live in the short term and sort through all my crap so that there’s not a lot left for anyone else to clean up if I die tomorrow.

I try to comply with the requests of my lawyers to not push myself for fear of losing my matching salary benefits, but that forced idleness is an actuarial’s view of life, not mine.  My ADHD goes nuts when faced with frustrating situations that I cannot change, so forced idleness will never be my go to strategy to keep depression away, and to keep the joy of simple existence primary in my daily life.

While the doctor can’t set a timeline, the insurance company and the lawyers continue to push for a timeline.  One, to not end my life prematurely, and the other two with an eye toward the bottom line and knowing when I’ll either stop being a paying customer, or when I’ll stop sucking at the faucet of their profits and profitability calculations.

No answers here.  I’m not a person of faith.  I’m not a person who believes in fairy tales, even if I’m a huge believer in hope.  Hope that there will be a happier chapter ahead.  Hope that everything will work out.

All I can tell you is that I’m not dead, yet, and I don’t know why, either.  Living beyond expectations creates strange bedfellows in one’s life, but I refuse to simply lay down and die when there are still so many good days left to enjoy despite forecasts to the contrary.

Bedfellows

 

40+ year relationship

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Let me first say this post is not about me.  I care about the person involved, and we’ve been together as friends since I moved into her apartment as of July 21, 1994.  (Don’t ask me why I know the date; just know I have some “Rainman” talents, and remembering ridiculous things, and we’ve been friends for 26 years).

We survived an explosion involving a fire which shattered our lives for a time in 1996 through 1998, but we’ve always had each other’s backs regardless of whether or not we agreed with each other’s choices.

After I moved in with the Roomie (forever her nickname for blogging purposes), I learned horrific things about her upbringing that broke my heart.  Abused by her Mother (fingers on the stove to teach her not to touch, is just one repeatable offense); valued only for her appearance, she was a very popular young woman who dated professional athletes.  Tall and willowy, her appearance was everything I ever wanted, but which my short, round, brunette body would never be.

I tell you all that to tell you this:   our initial interview came at a time of challenge in both of our lives.  We were dancing around why her former roommate moved out (I later found out he was a repulsive little snake of a man, and physically abusive to her), and we talked about the fact that I didn’t date (at that time) and would be always underfoot.

We later found out a lot more about each other and which topics were too tender for initial discussion, but we thought we could tolerate each other enough to try to be roommates.

The first night I moved in, it started off with a bang.  She was out, and a weaselly little man came to our apartment with McDonald’s in his hand, pushing his way in, because Roomie was expecting him and on her way home from wherever.

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Clueless.  Nonplussed.  I was stupid and let him in.  A stranger.  Within moments, I realized that the barfly boyfriend was  drunk off his butt, and I wanted him out of the apartment.  Raised as the daughter of a functional alcoholic, I may be slow on the uptake, but the minute I realize you are drunk and angry or drunk and a bully, you are on your way out.

He scared me, and while I don’t remember much beyond the anger in his eyes as he threatened me when I promised to call the cops on him if he drove away drunk, I got him out of the house.

Thereafter, I hit the hardware store to buy peepholes and installed them into the front and back doors.  I went to bed with a note to the roommate about kicking out her boyfriend on my first night there, and a request to talk in the morning.

It’s amazing that the roommate situation survived, but it did, and I later found out that she spent many nights at the bar around the corner, as she liked to socialize.

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I have had bar owners in the family, and many relatives have worked in bars, so I’m not anti-alcohol.  I am anti lacking self control.  I am anti meanness.  I love the fun atmosphere in a happy bar, and I stay away from dives where bar flies hang out, existing only to drown their sorrows.

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I joined the Roomie’s preferred social life when the local utility company blew up our apartment complex, leaving us with nowhere to go as we tried to rebuild our lives.

You will recall, if you’re older, that most people carried around a brick-like satellite cell phone for which they paid almost $5k to acquire in 1992 or shortly thereafter, and which cost an average of $1 a minute to use.

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We were not those kinds of spenders, and I’ve never been one to keep up with the Joneses, so the bar was a safe place to hang out while being reachable via the wall phone.  For three (3) weeks, I was virtually homeless, with no safe place to hang out.  The bar was welcoming, had a bathroom, and better than hiding in my car while waiting for a new apartment to become available..

I tell you all that to tell you this:  the Roommate’s Frenemy was a user on the edges of my life, and I never really noticed her until those 3 weeks I spent in the bar.

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At that point, 1995 had been horrendous for the Roomie (September, broke up with another cheating boyfriend, this one stolen by the Frenemy; November, the Roomie had a tumor removed that partially paralyzed her face; Frenemy was making scenes, demanding to be forgiven; the Roomie’s Grandmother died around Thanksgiving; and our home blew up at the end of January).  So, here it was February, and here we were stuck in the local bar, Frenemy was the bartender, and verbal abuse from the very unhappy Frenemy was the icing on the cake.  The Roomie and the Frenemy made up over the boyfriend theft, and it was none of my business.

Flash forward, the Frenemy is in and out of the Roomie’s life, always doing something mean and belittling to get kicked to the curb, and always managing to worm her way back in.

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The last time the Frenemy showed up was when her husband was dying of tongue cancer.  The Roomie has a soft heart, and the Frenemy moved into an apartment nearby, so that she could have help with her dying husband, as she was in the apartment almost every day.  Not. My. Business. But…

The friendship ended, again, due to toxicity, and then was revived again when someone they both knew passed away unexpectedly.

Shortly thereafter, maybe 2009 or 2010, the Roomie had inherited a bunch of money from the passing of her Grandfather and her abusive Mother, and Frenemy – who was living more than two (2) hours away in a property owned by her son – was back in the Roomie’s life, spending the Roomie’s money like water.  Sad, but not my business.

Almost immediately, the Roomie’s drinking increased to include 3-6 shots of tequila or vodka at home, any time the Frenemy dropped in, and that’s in addition to the 2-4 glasses of Chardonnay.  Sad.

Something happened to break up their friendship, again, and I hoped Roomie would get the drinking under control now that the barfly Frenemy was gone.  No such luck.

Fast forward to 2020, and the Frenemy is back in her life and continuing her bullying ways.  The Roomie is supposed to drive to Turlock this weekend to see the house the Frenemy has bought herself now that her own father has passed away, and I’m sad.  The Roomie is driving 100 miles and 2.5 hours away to spend the weekend with this vicious, unhappy woman.  Being able to shed the emotional ties to an abuser is one of the hardest things a person goes through.

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I only found out about it last night, when I became aware that the Roomie wasn’t telling me about where she was going for the weekend, but want me to check on her cat.

To say I wasn’t happy about the Frenemy re-entering her life is an understatement, but… It’s. Not. My. Business.

The Roomie is at a particularly low point in her life, working less than 20 hours a week due to the Pandemic, afraid of what the future holds, and dreading change while self-sabotaging.  Heartbreakingly sad, as only the Roomie can do the necessary hard work to deal with her fears and get onto more stable footing.

Much as it pains me to see that unhealthy relationship rear it’s ugly head.  I’ve said my piece, and I know that I’d be kicking this woman to the curb, but… It’s. Not. My. Business.  Sad, but true.

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22 years and counting

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We met in a crisis.

March, 1998.  Our apartment complex was on fire, and she was standing in the courtyard with her cat in a carrier.  Dressed in a sporty casual business suit for work, long, California girl blonde hair. I was standing in the courtyard in my PJ’s (flannel sleep pants, a tee shirt, slippers, and looking like a fishwife with my hair standing on end).  Complete and total opposites.

Instant friendship.

I’d already been through a fire and explosion in 1996, when PG&E blew up my apartment home, and we’d just settled the related lawsuit that week.  I still had three (3) more lawsuits to go (before the CPUC, California’s useless Public Utilities Commission; before the SPCB, California’s Structural Pest Control Board; and before the California Bar Association) before I could put that nightmare behind me by the year 2000.

At that precise moment in time, though, I felt like I was echoing the lawsuit nightmare of my Mom’s life at that age, but – luckily – without the three children to be responsible to shelter.

This friend and I couldn’t be more different, but we somehow forged a friendship.  We’ve traveled the world together.  She’s helped manage my crazy Auntie.  She knew some of my secrets, and I knew some of hers.

So many ups and downs.  So many adventures and memories.

Now, it’s over.  Pouf.

Why?  No idea.

In perspective:  At this point my Baby Sis has refused to talk to me for for (4) years, just walking away without explanation, or courtesy.  And, that was a relationship from birth through age 47, so you’d think I’d get some explanation letting me know that I was too toxic to deal with, what caused the final break, or something.  Nope, she just stopped talking to me.  There’s a lesson in there for me to learn, though, but I’ll be darned if I can figure it out since silence isn’t educational in all situations.  Yes, I’m getting A message.  Sadly, I didn’t get THE message to help me comprehend the specific boundary issue that killed all communication.

Today’s comeuppance:   A friend of 22 years has disappeared without a farewell, or a reason or even a fight.  Just another blip on my radar that I might not have noticed, except for the  hole she left behind.  Ghosted.

This pandemic has been hard on everyone.  I’m used to visiting and sharing time with people.  So, reaching out via facebook has had to serve the dual purpose of nurturing friendships while also keeping socially distant to try and protect my physical self.

About April or May, I noticed this friend (who lives in a small cabin in the woods), getting more irritable and worried about the state of our country.  We were on opposite sides of the need for a shelter-in-place order, but not really, as I agree my need to survive is not her responsibility.  But, she wanted the quarantine order repealed as she puts the economy ahead of people’s lives.  Not a deal-breaking boundary issue in my viewpoint, but she clearly disagreed.

By late June or early July, she shut down her facebook account and said she’d leave messenger on, but that she was done with fb.

Calls to her phone went unanswered, or were met with a brief response via fb messenger.  I didn’t think anything of it, as she was trying to change her business model (she’s an independent recruiter, and had spent the last 3 years embroiled in a business theft lawsuit regarding intellectual property rights and data ownership with someone she’d been in business with), so I knew she was feeling brittle and was both giving her space, as well as trying to be supportive.

Whatever, we’d been through rough times and I was both trying to respect her boundaries, as well as be a good friend.

In April, at the height of the Pandemic shutdown debate, she flew to a conference in New Orleans.  Not my choice and not my business, but I would not have done it due to my compromised immune system.

My blonde friend felt more invincible, and it was her choice.  Whatever.

In May, she approached me about taking a trip to Oregon for her birthday.  Another land and neighborhood scouting trip, as she’s been seeking an affordable place to move for quite some time.

While I knew August and her 60th birthday were still a few months away, I could not commit to the trip.  Not just because of my compromised immune system, but also because any travel – especially during a pandemic, when we’re all supposed to shelter in place – would bring the disability audit gods raining down so hard, that I just didn’t want to face the hassle.  She was not happy, but I thought we were ok.

Months pass.  I leave voicemails and private message dings.  Nope.  Zip.  Nada.

At the beginning of this month, August, I left her a vmail and a private message to see what her trip plans were so that I could see if we could celebrate her birthday either before she left of after she returned.  Got a private message response that the trip was cancelled.  Any follow up questions were ignored (with that so aggravating ✅ showing the message had been delivered / seen).  Ok.  You don’t want to talk.  Whatever.

We’re in the middle of a fire season emergency, and I call to make sure she’s ok, and that she knows she has a place to come if she needs one…  silence.

Next thing I know, a mutual friend is calling to see how she’s doing, having seen a post on facebook that she’s being evacuated, and I’ve got nothing.  I’ve been unfriended.

Seriously ?!?!?!

Alrighty, then.

I’m all for anyone doing whatever they need to do to keep mentally balanced.  If someone thinks it’s easier to walk away without an explanation, it hurts, but that’s ok, too.

So, now I’m someone that she used to know.

She’ll always be in my heart.  I’ll always wish her well.  I’m still hurt that our friendship of 22 years didn’t deserve a conversation.  But, if I’m a toxic person in her life then I applaud her doing what she had to do.

I just wish she would have said what I was doing to make her crazy.  I can’t work in a vacuum, and I can’t fix any failings in my personality (if I had agreed they needed to be fixed) without knowing what part of me made it so easy to walk away and not look back.

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Silenced – Ha !

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Checked in with a new-to-me blogger this evening, and I found an interesting post she wrote,

Handicapped?  Not yet, but..

Granted, she wrote the blog back in February 2019, but she closed the comments.  Seriously?

Well, I’m not one to avoid a challenge, LOL.

I was going to compliment her on her plans to remodel her bathroom to ADA wheelchair standards and do the work herself.  Had a cute Rachel Ray clapping gif, too (even if I had to use a still as I couldn’t get the gif to work)

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It wasn’t anything big, but I was going to let her know she wasn’t alone in preparing for the next stage of life as I rebuilt my deck (or, had it rebuilt) and had the shallow, adult with back problems easy riser steps put in, with plans to add a ramp over those steps should I reach the point where I must use a scooter to get around, and avoid walking up stairs.

But, I couldn’t tell her all that because I was silenced.  The comments on her blog were shut off.

Anyway, I tell you all that to tell you this.  You’re not the boss of me (so there!).  I won’t be silenced, LOL, but you’re welcome to try…

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Pandemic Projects

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I am not a happy camper, sitting around resting to conserve my limited energy with COPD, and waiting to die.  Or, waiting for yet another audit from my supplemental salary insurance policy, as they try and take my long term disability supplemental salary away.

My situation is not like a back injury (although I do have pain from arthritis, plus residual pain from last years car accident which did permanent damage to my already unhappy spine, and phantom pain from my failing liver due to NAFLD).  Regardless, the insurance company believes I’m “too active” and want to cancel the benefits owed to me for years of premium payments because they are treating me like a back injury / faker vs. accepting the real limitations and body betrayals I fight and deal with every day.

Having been diagnosed with ADHD as a child, idle time is not my friend, so I must also keep busy to stay in a calm state of mind.  This series of projects are a summary of how I’m spending my enforced idleness while trying to stay healthy and not drown from sitting around too much, allowing fluid to build up in my lungs and extremities.

The insurance company lawyers also increase my anxiety and get on my last nerve, so it’s important that I stay busy to alleviate my stress.  Stress is a killer.  Healthy and gentle physical movement is my preferred solution versus taking fistful of anti-anxiety medications.  So, here’s my Summer “pandemic projects” report, LOL.

This batch of bricks and pavers in the back of my car is about $50 to $100 worth of pavers and bricks.  I bought some black styrofoam pads to (mostly) protect the back of my car, and move the bricks in and out of my car as energy levels, painful feet swelling and migraines permit.

Each brick is about 3 pounds.  $0.37 each, before taxes.

Each patterned paver is about 21 pounds.  $3.00 each, rough cost.

This shot is about 20 small bricks and 15 larger pavers.  I generally load 500 to 700 pounds of bricks and pavers in my car one day.  Unload the bricks and pavers the next day.  Then, stage the bricks and pavers on a third day.  (With lots of times for naps and resting in between each segment of effort).

While most of my projects would be a weekend’s worth of work for people with normal lung capacity, with my energy levels it’s a much slower reality for tackling my pandemic projects.  Never mind the budget issues for making my money stretch between paychecks.

Add in my feet swelling due to a medicine change, making it hard to walk without pain, and you can see that I’m doing my best to keep moving as that’s very necessary for my overall health.

Got the iris bulbs on Friday, got them tagged with photos of the bulb in bloom, and got them sorted by color and planted by Saturday night.  (Yes, I’m OCD.  Can’t wait to get plant stakes to mount permanent and prettier ID’s for each bulb).

 


The terraced planter is a bit cockeyed with a bit of a curve to the bottom level, but if I remind myself it’s got some Hobbit / Fairy garden charm, I can control my need to make those lines brutally straight and rigid, LOL.

I also managed to start stacking the pavers for the skirting area under the deck.  It’s going to take forever to finish all three sides, one or two carloads at a time, but that’s coming together, too.

Given our early morning rain, thunder and lightning surprise storm on Sunday, and our 110 degree highs for yesterday, I’m amazed that I was able to start the dry stacked stone paver wall…

I wanted to get the soaking tub into the pocket patio area, though, and those pavers had to be out of way so that I could drag the stock tank through the side yard to get it into the back, behind the screened in porch.

As you can see from the black fencing area below the deck, I first put up fencing to ensure that the area was closed off to keep the Park management off my back for not having it closed in underneath.  (Why they care is beyond me, but they appear to be hyper focused on my yard while I’m going through various efforts to renovate this white-trash-on-parade mobile home from what it was when I first purchased it four (4) years ago).

So…  that determined my priorities (even though I should be saving every dollar to work on the electrical or replace the furnace).  This black wire fencing will also act as wall support so that the dry stacked pavers won’t collapse inward, under the deck.  Unless there’s an earthquake.  All bets are off in the event of a quake, and I’ll probably have to restack the pavers if we get a serious enough shaking to dislodge the non-cemented pavers.

I decided to start building the paver wall along the side first, as that’s the largest area the eye will track.  Once I have the side wall finished, I can then come back and build the front and back areas so that the “trim” looks good (and hopefully increases the curb appeal and resale value of my property).

You’ll laugh, but one of my neighbors raids all older homes being removed and replaced in the Park.  Since I very much resent the fact that Park management would not let me pull out and replace my mobile home with a factory-direct log cabin for $36k (they will only allow Alliance or Allied-branded homes be placed in this Park, at a cost of $200k or more!) I’m renovating as my budget and flexible priorities allow.

But, it was that neighbor’s raiding and removal of all space-specific pavers that also made up my mind to use a dry-stacking technique that I’d found so charming in Ireland, Scotland, England and Wales.  Granted, they don’t normally have earthquakes in Europe, so while these dry stacked rocks have endured for a millennium or more, I don’t have such high aspirations.  At this point, I just liked the rough hewn look, especially contrasted with grasses and flowers to soften the grey lines.

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If my mobile home is sold for removal once I’m no longer on this earthly plain, I’d like someone to get some salvage value for recycling those pavers vs. having the cemented together wall pounded into rubble to clear the site for whatever new unit is chosen.  So, with a nod to my neighbor’s future salvage efforts, dry stacked pavers were my way to go.

The faux solution I was chasing for the replacement skirting / wall would have been $5k to $9k, once the materials were bought, the supporting structure was built, and the labor for the worker’s efforts.

This solution, at approximately $50 to $75 a carload / section is much more affordable in small bites, and I don’t have to have anyone under foot, working in my space.


Finally, I told you all that to tell you this…  I got the stock tank purchased and filled yesterday, and I will look forward to soaking my cares away as this heat wave continues.

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Whatever you’re doing to keep busy and not lose your mind during the whole shelter-in-place Summer, I hope you’re making time for fun, too.

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Medical jargon:

ADHD = Attention deficit hyperactive disorder

COPD = Chronic obstructive pulmonary disease (mine includes umbrella inclusion for asthma, pectus excavatum repairs, small airways disease, and emphysema).  Not all COPD is the same.  Not all patients respond the same to limited lung function and oxygen saturation rates.  Not all percentages of normal (FEV and FVC) lung function impact sufferers the same.  In my case, I have an FEV of 26% of normal, meaning that 2/3rds of my lungs are garbage.

NAFLD = non-alcoholic fatty liver disease

One more for the road

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QueenCalgon wrote this lovely poem regarding her bipolar challenges, and posted it on the myCOPDteam wall.

Since I think these sentiments fit the COPD battle, too, I’m giving credit where credit is due, and sharing QueenCalgon’s beautiful writing with you.

And once again…………..the Poem of the Week:

I Rise

I rise
from the ashes of
what used to be,
a fire-forged creature
of strength and power.

Knowing my destiny
is to overcome the obstacles
life places before me.

Each day
is a quest for knowledge,
learning who I am
and striving for what
I could become:
complete oneness
with the many facets
of my being.

(c)2003 Amy Russo-Diver

Song Lyric Sunday

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Ref:  Monica and Veronica – Song Lyric Sunday

and  Song Lyric Sunday, 8-9-2020

Having read both Jim’s and Spark’s instructions (and having no idea what Monica and Veronica have to do with Jim’s harmonica), I’m sticking with the harmonica theme for my contribution to Song Lyric Sunday as Spark’s response spoke to me, even if I chose a different song by the same group she enjoyed.

For whatever reason, the harmonica bits in this particular song go through the back of my brain from time to time, for absolutely no earthly reason that I can comprehend or connect to the activities around me when the song starts uplifting my mood.

The lyrics are pretty deep, about lying to someone because you’re not ready to be honest or authentic with them.  And about that person’s willingness to let you get away with the prevarication or lies.  For now.

Run Around
Written and Sung by John Popper of Blues Traveler

Oh, once upon a midnight eerie
I woke with something in my head
I couldn’t escape the memory
Of a phone call and of what you said
Like a game show contestant with a parting gift
I could not believe my eyes
When I saw through the thoughts of a trusted friend
Who needs to humor me and tell me lies, yeah humor me and tell me lies
And I’ll lie too and say I don’t mind
And as we seek so shall we find
And when you’re feeling open I’ll still be here
But not without a certain degree of fear
Well, what will be with you and me
I still can see things hopefully
But you
Why you wanna give me a run-around?
Is it a sure-fire way to speed things up?
When all it does is slow me down
Shake me and my confidence
About a great many things
But I’ve been there I can see it cower
Like a nervous magician waiting in the wings
Of a bad play where the heroes are right
And nobody thinks or expects too much
And Hollywood’s calling for the movie rights
Singing “Hey babe, let’s keep in touch”, hey baby, let’s keep in touch
But I want more than a touch I want you to reach me
And show me all the things no one else can see
So what you feel becomes mine as well
And soon if we’re lucky we’d be unable to tell
What’s yours and mine, the fishing’s fine
And it doesn’t have to rhyme, so don’t you feed me a line
But you
Why you wanna give me a run-around?
Is it a sure-fire way to speed things up?
When all it does is slow me down
Tra la la la la bombardier, this is the pilot speaking
I’ve got some news for you
It seems my ship still stands no matter what you drop
And there ain’t a whole lot that you can do
Oh sure the banner may be torn and the wind’s gotten colder
Perhaps I’ve grown a little cynical
But I know no matter what the waitress brings
I shall drink it and always be full, yeah I will drink it and always be full
Oh I like coffee and I like tea
I’d like to be able to enter a final plea
I still got this dream that you just can’t shake
I love you to the point you can no longer take
Well all right okay, so be that way
I hope and pray that there’s something left to say
But you
Why you wanna give me a run-around?
Is it a sure-fire way to speed things up
When all it does is slow me down?
Oh you
Why you wanna give me a run-around?
Is it a sure-fire way to speed things up
When all it does is slow me down?

Burying Mom. Again.

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Mom’s been gone a little over 15 years.  She died April 25th, 2005.  While I managed to go through her possessions and clean out her condo to put it on the market by Memorial Day, 2005, there were boxes and boxes of papers, photos and detritus important to Betty that her children just didn’t have the stomach to wade through.

So, I put it all in containers and shipped it off to California.  My goal was to get to it “later”, and, somehow, later still hasn’t come.  I’ve moved those boxes with me from place to place, and am lucky if I manage to get a single box pared down every few years.

Having bought a smart TV for use on the screened-in porch, (it’s now sat in its box for over a year due to the timing of the car accident, and my inability to bend over, lift boxes and move freely).  Since it’s a year later and I’m much better following intensive physical therapy, it was time to tackle the boxes.

So, today was spent largely in 1973, two years into my Mother’s effort to get a divorce.

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So many practice letters.  To the church.  To Cardinal Cushing.  Details of petty cruelty.  Details of abuse and threats she endured.  My social maladjustment and counseling notes.  My brother’s suicide attempt, after he’d burned his bridges with our Mother, and our Father was supposed to take him to live with him, but… But !  Somehow, the timing was never right for Daddy Dearest to follow through on his promises.

Mom’s writing as she struggled so hard to come to terms with her life speaks to me through the echoes of my own memories, especially when they contradict her version of a story.

For instance, I was at the dentist having fillings, and my father walked in during the appointment.  He left me with a check to pay the dentist at the end of the visit, and then he walked out.

In Mom’s version of events, Dad gave me the check the night before and was never at the dentist’s office.

In Mom’s version of events, the office admin called my Mom about the double payment (as Mom had already pre-paid the $32 fee a month earlier), and they refunded Mom’s payment while sticking my father with the bill (Bravo!  I love women sticking together in an unfair and sexist situation).

I’d never known about the refund of Mom’s hard earned money, so I’m both cheering her on while feeling oddly gaslighted at the difference in what she wrote of the incident and where it involves me.  Weird.

But, I tell you all that to tell you this.  I got through most of a box today, and I’ll be back at it again tomorrow.  Taking photos of Mom’s letters and notes lets me get rid of the originals without feeling like I’m betraying her fight or her accomplishments in getting that man out of her life, even though I have no earthly reason to revisit her heartache by saving photos of her letters.

Until I get my mind settled on this sorting and trashing, though, the photos will remain on my tablet and backed up on my hard drive.

There is no earthly reason for me to keep these items, especially as I wouldn’t want anyone going through my affairs to have to wade through such devastation and betrayal – especially if it happens that No. 1 Nephew has to handle the clean out.  Our paternal family curse needs to end with Baby Sis and me.  No way should it poison another generation.

I know Mom would be at peace with my choice.