My magical elixir against reality.

Every two weeks or so, I have to pack my COPD and NAFLD and diabetes medications and supplements.  I pack them in a grab and go plastic baggie for each day so that I, a) Don’t have to think about or deal with assembling the magical stones meant to offset mortality, and, b)  Do my best to comply with my medication orders while also supplementing my Rx’s with dietary magic to make up for the fact that I don’t eat fruits and veggies, and with the hope that these vitamin fortifications will help me beat the reality of my physical frailty.


I have a daily diary I keep, as if that will offset the Endocrinologist’s belief that I am gorging myself daily on sugars and carbs, sodas up the yin yang, and working to actively sabotage my various doctor’s efforts to keep this old carcass upright and moving.

I also tryand cook most of my own meals to ensure I know exactly what I’m putting into my body, and that any forbidden sugars and carbs were in my diet with purpose and pre-planning.

Tonight, I’m going out to see Gabriel Iglesias, Stand Up Comic, and enjoy the crowd, the laughter, and share a moment with my buddy, R, who also loves stand up.


So, knowing that I have to be able to stay awake for an extended period of time, and knowing that I don’t want to miss any part of tonight’s performance by mis-using my limited number of “spoons” for the day, or eating the wrong thing, etc., etc., etc…  I’m sitting on my couch and being oh so good.

Perfect, even.

I’m up.  I’m showered and groomed and resting.

I’m perfectly aware that one wrong decision could leave me exhausted and unable to hide my chronic condition, so I’m behaving.

I hate behaving, but I understand that’s it’s for the greater good.  I understand that self-sabotage by fighting against my reality hurts no one but me.  And, I’m ego centric enough that I want to pass for normal for as long as possible, whenever possible, so I do what I actively dislike and live a regimented life.



As Springsteen says in his recent Broadway show, it’s like my own litany of “Church, school, homework.  Church, school, homework.  Greenbeans.  Greenbeans.  Fucking greenbeans.”

In my case it’s:  Get up.  Take my meds with whatever food won’t derail my plans for the most energy in any given day.  And repeat those fucking steps ad nauseam until the weather improves so that I can leave this tin can of a home, or until my next trip comes around.

I know I have it better than so many other folks who can no longer leave their rooms or their homes.  Who are confined to a hospice bed in a hospital waiting for the end.  Or worse, who are out on the streets, truly destitute and without a place to call home.

But, as I sit here contemplating my medicated breakfast of champions, I just hear Springsteen in my head making me laugh.  “Greenbeans.  Greenbeans.  Fucking greenbeans.”  Yep.  It could be worse.

I might be at home in my childhood, dealing with my daily medication routine under the watchful eye of my mother, and facing a dinner of creamed peas and tuna.

Find your laughs where you can every day, and find a way to accept reasonable compromises so that you can do whatever you still desire to do despite the odds stacked against you.

Whatever you do, though.  Stay away from that fucking creamed peas and tuna.

Deadlines with Infinity

Trip is a man with 3 first names as his moniker.  A veteran.  A proud man.  He’s coming to the end of his battle with COPD.

Westpreußen, Russlanddeutsche Flüchtlinge

He’s as skinny as a rail as the fight to breathe is stripping the fat from his body.  He’s in tremendous pain from tumors in his lungs pressing on his heart and lungs.  And he’s spending every day waiting to die when it’s not yet his time.

The man has lost well over 60 pound on his 6 foot 2 frame, but at 149 pounds he’s still getting up and driving and being ornery with his wife.

We have a group chat, a bunch of us from the COPD site, and Trip is expecting that his scans on Friday to see what’s going on with his heart and lungs will offer new hope for surgery.  Even though he’s been told that he’s too frail to operate on.  Even though they have been telling him for months that his only hope for pain management is hospice.

He is not going to go quietly into that everlasting night.

Instead, he’s badgering the Docs for a timeline as to when he will die, even as the rest of us counsel him that it’s not yet his time.

(In general, we find that dying is pretty predictable.  Folks have more exacerbations, they sleep more.  They stop caring about the world and go to bed and don’t get up.  Like my conversation with B, the boat captain, our team conversations are about dealing with our fears and finding a way to accept that we are dying.  Just not today.  Maybe not tomorrow.  There is no way anyone can give a person a timeline.  There is no date stamp on our feet).

I guess this is why I keep planning trips.  As long as I have something to look forward to, maybe my time won’t come any time soon, too.

We’ve all been there. Wanting the waiting to be over.  Wanting to know “when”.  It’s an unanswerable question as no one knows until one starts sleeping all day, being hard to rouse and stops eating, that their time is nearer.

We go out with a nap, and very rarely with a heart attack or during an exacerbation.  If we’re lucky, hospice respects our wish to end our struggles and helps us along with easy access to morphine to the point where we just stop breathing and aren’t in pain any more.

That’s how it was for my Mom.  That’s how it was for my Big Brother.

In Mom’s case, she didn’t die when she thought she was going to.  I was pestering my brother and sister long distance, and telling them to go lay eyes on her, that she wasn’t answering the phone, and I was 3,000 miles away and knowing that she wasn’t doing well.

Baby Sis found her.  Found her and called the ambulance and cleaned up the mess and got her into the hospital.  Only to lie to me for 9 days straight about what was going on, until the night that she called and said Mom was dying and I needed to be on the plane immediately.  Day 8.  35 pounds lighter, because Mom wouldn’t eat the food and had mentally checked out while trapped in the hospital.

Baby Sis accused me of willing our Mother to live.  That I was keeping Mom alive against her will.  Nothing that  said to the contrary was listened to, and I had to deal with Baby Sis’s railing against fate that Mom was in limbo and wasn’t dying fast enough.

So, after 3 days at home and fighting to get Mom’s wishes respected, I got her released from the hospital and brought home to die.  But, Mom perked up.  She thrived under Hospice care, and she had another, final, year with us before saying her final good byes.

We had a final game of scrabble on a cold and snowy Friday as I stayed at home with her, and she had a final meal (but for the life of me, I can’t recall what it was – just that she enjoyed it).  Mom went to sleep on the couch on Friday night after our last game of Scrabble, and then she was occupied with her dreams and visitors in her memory (or, maybe it was God and his angels – I’ll never be able to say).  I tried to rouse her once or twice to get up and use the bathroom, to eat, to go to her own bed, but she wouldn’t have any of it.

So, I slept in a chair by her side throughout the weekend, trying to ensure that she didn’t fall off the couch in her restlessness, and not wanting to leave her alone as something inside me just said that it was her time.

Monday morning dawned sunny and warm, with the recent snowfall melting, and my Big Brother came by again to check on her, and helped the hospice nurse move Mom into her bed.

With the sun shining on her as she lay in her bed, Mom passed peacefully in her sleep by 10am that morning.

In Big Brother’s case, which happened 6 short years after Mom’s death, he did everything he could to prepare his boys for adulthood.  His youngest had just completed his first year of college, and his oldest had just graduated on May 22, 2011.

I was back on the West Coast dealing with Las Vegas Auntie’s drama, and on the verge of homelessness from trying to care for her while getting her rehabbed and back on her feet.  I saw my brother at his oldest son’s graduation, and then he’d taken to his bed and was gone by June 1, 2011.  Peacefully, at home, in his favorite chair with all of us in attendance.

While I, too, face my own mortality, and know that they had a general forecast of 3-5 years for my stage of the disease when I stopped working, I have since passed the 3 year mark and am still doing well.

Will I make it to year 5?  Year 10?  No one knows as long as I stay stable.  So, I keep busy and try to be of comfort to others of my kind who are afraid of dying and want to know when they will be released from their worries.  It’s hard to say to them that they won’t have a date with infinity until they no longer care about life, but that’s what I’ve found to be the case.  I am not an expert, and I don’t want to be a caregiver or be dependent, but the reality is that life continues long after we’re tired of living.

So, rather than spending my time fighting with loved ones, I choose to go this road alone until my time comes, too.  Hopefully, my money will last and I will find a way to enjoy life despite any fears or worries.




I have a real hard time dealing with homelessness.  But, it’s hardest to deal with when:

– It’s a woman

– It’s raining

– The homeless person tries to connect with me to beg for money

In tonight’s encounter, I’m running around doing errands, spending money I don’t really have, but getting done what I must.  I’m also trying to get ready for a comedy show on Sunday night, so I’m trying to get spending money from the bank, gas up my car, and do all the other things that one does to prepare for a fun event with a friend.

So, it’s been pouring off and on all day, and I need to fill the tank.  Thinking about the route I’m traveling and the cheapest place to get gas without back tracking between where I was at and home, I decide to hit a local gas station that’s looking a bit seedy.

I do a run around all the pumps, and there’s some boards up by the garage doors, but the shop door is open.  All the pumps ONLY sell 87 regular gas, which is fine by me, but still weird.

So, I do the run around the pumps and end up parking father away from the storefront than I would normally choose, but it looked safe.  Foolish me.

As I’m pumping the gas a seemingly homeless woman comes up to me and starts to beg.  I give her the hairy eye ball and gruffly tell her, “Not while I’m handling money!” in a firm voice.

As so many of the mentally frail do, she steps back immediately, hurt, and walks away upset because she feels I yelled at her.  She stops and says to me, “It’s ok to talk to you on the street!  I didn’t do anything wrong!” as she continues to walk away agitated and upset.

Now, I don’t know this woman from Adam.  She’s not one of the regulars that I can recognize on sight.  But, she’s upset and I feel like I’ve kicked a kitten.

So, I proceed to fill my gas tank while keeping an eagle eye out.  She keeps an eye on me, and approaches a man coming out of the storefront, and he shoos her away, too.

The weather is miserable.  She’s mostly clean.  But, she’s in sandals and it’s wet and raw out.  She’s got a blanket over her shoulders, a hat on her head, and she’s layered up with these ridiculous bare feet in sandals.  Sad.

So, now I’m kicking myself for being so paranoid that I scared sad homeless woman.  She could be me.  She could be my friend, C, who is now in the board and care home up in the Inland Empire area near the boonies…  I’m feeling like shit, when I was just protecting myself.  But, I need to make amends.

So, the car is full at 36 dollars, and I pull a $10 bill out of my wallet, heading toward the homeless woman who is now pacing and watching me approach.  Clearly, she’s in fear as to why I’m heading toward her after yelling at her.

“Look”, I say.  “You should NEVER come near anyone, but especially a woman, when we are filling up our cars and trapped at the pumps.  You scared me, and I worry about being mugged.  Now that I’m done filling my car, what did you want to ask me?”

Like a bird, looked at me sideways, trying to smooth her ruffled feathers.  “I really just wanted to know if you could spare anything” she says, over the cigarette in her mouth.  “I’m sorry I scared you.”

“I’m sorry I upset you, too.” I replied.  “I appreciate your backing off when I asked you to leave me be, and I’m happy to share what I have with you in the hopes that it will help you in some small way.”

She smiles like a little kid at Christmas and takes the money.  “Can I give you a hug?” she asks, tentatively.

Now, anyone who knows me knows that I need my space and hate to be touched, but this was not about me.  This was about letting this woman know that I saw her and saw her humanity in a very difficult situation, so we hugged.

Not to miss an opportunity, she then asks if she can use my phone to call a friend for a ride.  I had to smile and let her know that I don’t carry a phone.  I’m not sure she believed me, but that’s ok.  I wasn’t going to be able to resolve her difficulties, but we’d come to terms so that I wasn’t adding to her burden for that small moment of time.

Frailty.  It comes to us all, and I’m thankful that I have a roof over my head on this Wintery, wet, night.  I still have $10 for my share of the concert parking tomorrow night, and life goes on.  Compromise and sharing a tiny bit of what I have allows me to look at myself in the mirror, even if the money goes for cigarettes and alcohol.  With any luck, it will go toward a nice meal and a dry place to sleep tonight, if she can find enough folks to pitch in.

Der Orange Doofus, however, is determined to divert money from our already weakened safety net, and it hurts me that people like this woman don’t have better resources than what she can beg on a rainy evening.  There but for the luck of the draw go I.


Melanie got me thinking in her latest SparksFromACombustableMind blog, “Getting to know you“.  So, before I do what I came here to do tonight, I’ll start off by answering her questions.  Anyone reading this can feel free to jump in or not, as they wish.


What keeps you up at night?

What’s the most surprising self-realization you’ve had?

What’s the most illegal thing you’ve done?

What lie do you tell most often?

What do you regret not doing?

What gives your life meaning?

What do you most often look down on people for? What do you think other people look down on you for?

What bridges do you not regret burning?

What are you most insecure about?

How do you get in the way of your own success?

What’s one thing you did that you really wish you could go back and undo?

What are you afraid people see when they look at you?


What keeps you up at night?

Anything and everything.  Why am I here?  Why do my feet burn?  Why didn’t I stay up longer until I was tired enough to ignore my pain and sleep.  You get the idea.  All self-centered things, combined with whomever I talked off the ledge that day, or whomever came a little closer to losing the battle that we all share when fighting COPD.  And, despite it all, it is a fight to face your mortality each and every day and remind yourself that you’re fine and that today is not THAT day.

What’s the most surprising self-realization you’ve had?

As annoying as I can be, I do have people that like me.  Really, really like me.

What’s the most illegal thing you’ve done?

Shop lifting.  As a kid, I’d steal the bottles from the back of the store and return them to the front in order to get cash for candy.  Or, I’d shoplift.  I don’t know where I was when I got the idea that this was the thing to do, but I know exactly where I was when I was busted by the store owner.  I was with my big city cousin, visiting her neighborhood, and yet I only remember me being busted.

What lie do you tell most often?

“Do what you want.  I don’t care.”  While I know that everyone will do exactly what they want, butI do care, and passionately, that they make the decision that I think is best for them.  Yep.  Shades of my Mother’s daughter.  It’s like I’m the only one in the world that can see its pitfalls, and like Wonder Woman, I must protect everyone from themselves all while standing to the side and allowing them to make their own mistakes.  Crazy.

What do you regret not doing?

Not being brave enough to defy my Mother’s worries and join the Merchant Marine upon graduation from High School.  I really wanted to be Julie McCoy, even though I’ve never been innocent enough or perky enough.  But, wiser heads counseled me on everything that she knew I’d hate, and so I listened and made a new plan.

What gives your life meaning?

Nothing.  Seriously.  I’ve struggled with the meaning of life since I was about 5 years old and I lost my baby brother and almost lost my Mother to her heartache.  It’s been 53 years, and I’m still clueless and no wiser about why we are all here and what it’s all supposed to mean.

What do you most often look down on people for? What do you think other people look down on you for?

  1. What do you most often look down on people for? Abandoning their responsibilities to children or the people that love them.  Yeah, those bags got packed a long time ago for me, and even though I made it out alive, I still worry about letting someone I’m responsible for down.  Even though I’m only responsible for myself.
  2. What do you think other people look down on you for?  THAT list is endless.  But, since I’m not supposed to be concerned with what others think of me, I try to ignore that question as people will be who they are and think what they like, regardless of the truth or circumstances.

What bridges do you not regret burning?

Kicking Daddy Dearest out of my life.  While there is not a day that goes by that I don’t think of him and wonder how he’s doing, he needs more care than I can provide to deal with his toxic unhappiness.

What are you most insecure about?

My physical safety.  As my body fails me, that worry comes back to the forefront more and more often even though no one has jumped me in years, or been mean to my face.  I just worry about cliques and mob mentalities and frailty.

How do you get in the way of your own success?

My own big mouth.  Seriously.  I know it, yet I still keep on talking.  I never learn.

What’s one thing you did that you really wish you could go back and undo?

I was a horrible 12 year old raising a 4 year old while our Mother fought depression and Daddy Dearest did his manipulating best to steal everything not nailed down from our Mother, including her children.  Into this den of snakes, I was cast in the role of child minder – even though everyone in the world KNOWS that I suck at nurturing and child care.  I had some scary moments with my Baby Sis when she was supposed to mind me, and I was not supposed to lose control of her, ever, and yet we’d be off doing something in the big city and she’d sass me and I’d lose my mind with fear that I would not be able to keep her with me as she’d run off and I’d have failed in my responsibilities to care for her, as well as failed in my attempts to give her a fun day out.

Despite our best efforts to get along, share vacations, and generally enjoy each other as adults that can choose whether or not to be in each other’s life, she has decided that I’m persona non grata and I’m clueless as to what it was that I did that was the last straw.

The baggage between the two of us is so bad that she hasn’t talked to me since 2015, and I’m still not clear about what caused me to be tossed from her life as the toxic personality.  I’d fix it if I could, but it takes two so I’m just trying not to cause her heartache by pestering her while missing her desperately.

What are you afraid people see when they look at you?

A silly, useless old woman. Family Collage


Help Paper cutut

As a disenfranchised worker and political obsessive, I have found an article in “The Nation” particularly interesting, especially the author’s closing remarks:

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“Thirteen years ago, Hurricane Katrina gave us an early taste of the future they [industrialists / capitalists] have built for us: a murderous, militarized, racialized response to human vulnerability. Now we are living in it. We know what their world looks like: abundance for the few behind walls and razor wire, precarity and impoverishment for the rest of us; endless prisons for endless streams of migrants, concentration camps by other names.

But there are other futures, other worlds as yet unmade. We have only to choose ours, and to fight like hell for it—fiercely, with forms of solidarity that we have not yet been able to imagine. Solidarity not only with one another but with this planet and the many forms of life it hosts. There is no way out of this but to cease to view the Earth, and its populations, as an endless sink of resources from which wealth can be extracted.

This is not hippie idealism but purest practicality: There is no way to preserve anything approximating the status quo without turning into monsters, or cadavers, and no way to survive that is not radical. In this future we will need to keep our eyes open and learn to calm ourselves only with truths. If other worlds are not yet visible, it is because they are ours to make.

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I just posted a great story on mainstreaming the mentally handicapped with different learning abilities, and I want you to think about the fact that they are being mainstreamed into jobs that we are told American’s “don’t want”.

Sweet Jordan’s Bakery

When you contrast the story from the Nation with the story from WZTV Fox 17 News, you can see that they are both different viewpoints of the same topic – our vulnerability and desire to be able to take care of ourselves, all while trying not to contribute to the end of our planet.




Yes, I have way too much time on my hands in Winter.

One of our fellow bloggers, Marilyn Armstrong, has reminded me of how lucky I am to be an escapee from Massachusetts’ Wintery ice world; I haven’t thought of (or even had to consider) the existence of galoshes in years.

Given the crazy rain and flooding we can have, I *do* have a staple from my childhood, mud boots, acquired since I moved to the boonies and given the flooding our county suffered in the Winter downpours of 2016 / 2017.  But, I haven’t thought of galoshes in years.


In my case, the mud boots were an impulse buy from the local tractor supply store when I was out and about shopping for trees (I’d like a flowering almond, a dog wood, or a weeping cherry tree for that rear corner of the yard, by my neighbor’s shed).

Flowering Almond tree:


or a Dogwood tree:


Or, a Weeping Cherry:


Whatever it is that I ultimately decide to do, I want something in the far left corner of my miniscule lot, far enough away from the house to not dominate my pocket of sunshine, and yet far enough away from one neighbor’s fence line and another neighbor’s shed (a butt ugly color – kind of a pale yellow, almost a beige) to not create reasons why I *must* talk to neighbors about my tree bothering their property.

If I can find a way to make an English cottage garden thrive in drought country, without planting trees that will grow too tall to block my sunlight, AND find a way to add a small fish pond, I’m going to do it.

– after I get the skirting finished

– after I get the electrical updated to add replacement fans

– after…  etc., etc., etc.  (This whole homeownership business can fill a lot of day dream time and distract you from whatever’s going on in the real world, if you let it).


I’ve decided to put off dealing with the landscaping until I can hire someone to do it right (and handle all the heavy digging and landscaping for me).  But, I still shop and sketch and think about what I’d like to put in that corner.  And, which shopping led me to the impulse buy of mud boots.  $19.99 at the feed and tractor store.  A bargain !

When I get the crazy notion to walk the fields behind my mobile home park, those goofy boots are perfect for dealing with any mud, protecting my feet in the event of rattlesnakes, and generally making me look like a harmless doofus, so that whosever abandoned property it may be will be assured that I’m harmless should they see me on their security cameras.

That being said, though, I’m about done with Winter.  I know it doesn’t compare to anything SparksFromACombustibleMind is enduring, because I ran away from much tamer Winters than she experiences in the mountains of Utah or my Aunt can see nearby in the mountains of Nevada / Las Vegas.  But, I have had enough of being housebound.


We’re supposed to have a blood red wolf moon on Sunday night into Monday night, with a star gazing event planned to be able to get out of the house and enjoy it.  So, I’d appreciate if the storms would stop.  Please.  I’ve truly begun to turn into a mushroom, I’ve been stuck in this house so long…







Dear Dr Ruth… Part II

I could have called this “Dale’s Departure”, too, as this is more than a sex blog, but you decide what to call it yourself, after you finish reading, if you’ve decided to continue with this tale.

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The original chat I’m writing about first began in Dear Dr. Ruth.    For those of you still interested in this chat, here’s the latest chapter where I pretend to be an expert on something that I’ve only dabbled in and researched on my own.  (Photo credit is “Quantum Leap”, and an episode where Sam got cast as Dr. Ruth).  

Sex and sexuality continues to be a huge taboo in the lives of healthy people, never mind folks who are disabled or dealing with a chronic illness.  I am here to say that handicapped or chronically ill people are not neuters or androgynous folks for whom sex and intimacy have no value.  We are not asexual children, for whom sexual activity has no interest as there are no hormones or memories of happier times driving us.

Everything works, even if it’s not in an appealing package or a body able to be supple and lithe and act on its urgings without effort.

sexuality and aging

What’s been really strange, though, is learning that my much younger cousin, as she’s entered her 40’s and following the passing of her Mother, is also going through a sexuality evolution very similar to what I experienced.

Even though we have different fathers (the brothers), I am left wondering if there is something damaged in our Paternal line that makes it easy to get between the ears of the women of our family.

Since she was raised Jewish, I know it’s not the Catholic guilt that I always blamed for myself.  But, raised to be “ladies”.  Raised at a time when sexual urges and women’s freedom to act on their own sexual interest was evolving, and also becoming sexually active in a time of fear for not knowing what caused HIV and AIDs, it’s strange to see my 10-15 years younger cousin going through many of the same personal quests that I went through following the death of our Moms.

Maybe we both have the same fear of being exposed and ridiculed for our decisions to be sexually active without the benefit of marriage.  But, whatever it was that got packed in our personal baggage, we’ve both done or are doing our best to root out the existence of fear and derision from the voices in the back of our brains.  That inner voice that never shuts up and always sees us as less than.  Less than desirable.  Less than capable.  Less than intelligent.  Whatever it is, I do find it funny that we two wallflowers ended up being cast as Dr. Ruth personalities in our very different lives.  She’s speaking to the shy women to try and free them of their self-imposed bonds, and I am speaking to the handicapped women.  Amazing what a small world it is.

At any rate, I digress.

I tend to do that when given free rein.

In this case, a few months have passed, and one of the COPDteam members tagged me in a private message to again discuss his concerns.  In this case, Dr. Ruth is turning into a grief counselor and life coach.

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(The picture which started this conversation was probably something like this shared on fb.  I love for helping me address my ever present homesickness with beautiful images):


So, he reaches out to me (and, remember, I type a lot on the tablet, so please excuse my spelling and missed errors – I think you’ll get the gist of the conversation despite the typos.  I’m still the blue ink typist):

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(For anyone who wants to know what Hypoxia or Pulmonary Edema is, there will be a definition at the end.  Basically, he wanted reassurance that he wouldn’t suffer when his time came).

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60 degrees tracker

Another aside – temperature variations will kill us fastest with COPD, and many folks are too proud to acknowledge that they may not be able to afford to care for themselves as it gets closer to the end.  In my case, having learned from Dale’s situation, I have a temperature gauge in my house to verify what the actual indoor temperature is, and watch it like a hawk to make sure that my thrifty, Scot’s soul isn’t sabotaging my own health over my dislike of stale air plus worries that my money won’t stretch to heat my tin can home.

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I think in some ways it’s a betrayal of the private messenger to repeat this conversation verbatim.  However, since I’m hiding the names of the folks who are still alive and might object to something I’ve published being traced back to the correspondent, I’ve done what I could to recount a real-time concern while also hiding the identity of anyone involved.

Because these topics are so taboo to discuss, I want whoever goes through my blog to have the option to read what was going on in my life and my head, trash it all, or take it and make a book out of it which might help someone else in similar circumstances.

Once we’re no longer here, nothing much matters to the person that has left this earthly plane.  There will be no one left who cares about me to embarrass by anything I’ve said or done or written.

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Almost forgot – here’s what it usually says on the death certificate when one of us passes, and why my teammate was inquiring into the ways that Dale or Mom might have suffered before they passed.

hypoxia definition

hypoxia types

pulmnary edema definition

See?  Even the definitions leave you shaking your head and not wanting to think of the reality behind the process of dying.