Childhood Trauma

I’ve been away from this site for quite awhile, as everything I’ve wanted to write about seems pointless and Debbie Downer.  But, I have 5 posts that I’ve been editing over all these months, and a blog by DrugOpinions on trauma got me to thinking about why I’m stuck in writer’s block hell.

Can ACE helps to solve our societal problems?

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Backstory:  It’s been a challenging Summer, with a bunch of myCOPDteam friends passing away, and with my budget being incredibly tight due to a car accident that totaled my new (4 months old) car, and dealing with the pain involved in the (relatively minor) injuries I received.

I’m broke due to being out of pocket to replace my car (found an IDENTICAL model, yes!), and the ongoing physical therapy co-payments as I work to rehab my body without relying on pain killers or other aids that might make my existing ailments worse, (for those who might have lost teack – Asthma / Emphysema / COPD;  diabetes;  non-alcoholic fatty liver disease; blah, blah, blah).  With all this being said, writer’s block is an additional bonus to my frustrations for dealing with my life right now.  Usually, I write until whatever’s bugging me is purged, and that outlet has been closed for quite a bit of time.

So, to try and clear my head, I’m going to try and figure out my ACE score to see if it adds any clarity to the crap floating around behind my eyes and between my ears these last few months.

ACE Questionnaire

Prior to your 18th birthday:

  1. Did a parent or other adult in the household often or very often… Swear at you, insult you, put you down, or humiliate you? or Act in a way that made you afraid that you might be physically hurt?
    No___  If Yes, enter 1 __  [ 1 ]
  2. Did a parent or other adult in the household often or very often… Push, grab, slap, or throw something at you? or Ever hit you so hard that you had marks or were injured?
    No___If Yes, enter 1 __    [ sort of?  Touch was used for control and silencing me, after all spankings stopped at age 5, when my Mom was afraid my father would beat me to death at my refusal to be apologetic when being defiant ]
  3. Did an adult or person at least 5 years older than you ever… Touch or fondle you or have you touch their body in a sexual way? or Attempt or actually have oral, anal, or vaginal intercourse with you?
    No___If Yes, enter 1 __   [ No ]  but, I had lots of surgeries, including one on my bladder, and I often wonder if that impacted my early interest in how the body parts worked…
  4. Did you often or very often feel that … No one in your family loved you or thought you were important or special? or Your family didn’t look out for each other, feel close to each other, or support each other?
    No___If Yes, enter 1 __   [ No ]
  5. Did you often or very often feel that … You didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or Your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
    No___If Yes, enter 1 __  [ No ]  My father was a functional alcoholic, but my Mom was the bulwark of the family and we were well cared for.
  6. Were your parents ever separated or divorced?
    No___If Yes, enter 1 __  [ 1 ] yes, thank heavens !
  7. Was your mother or stepmother:
    Often or very often pushed, grabbed, slapped, or had something thrown at her? or Sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard? or Ever repeatedly hit over at least a few minutes or threatened with a gun or knife?
    No___If Yes, enter 1 __  [ No, never in front of me.  That trauma was reserved for my Aunt and Uncle, who I was sent to live with for 3 Summers after my parents separated, and who seemed to get aroused by the violence after we were all in bed but unable to hide from the sounds of their fights, violence and sex, late at night].
  8. Did you live with anyone who was a problem drinker or alcoholic, or who used street drugs?
    No___If Yes, enter 1 __  [ 1 ]  Yes.  My father and my Aunt were both functional alcoholics.
  9. Was a household member depressed or mentally ill, or did a household member attempt suicide?                        No___If Yes, enter 1 __  [ No.  While I believe depression runs rampant on both sides of my family tree, my father was on lithium when I was 9, which contributed to the quietest 6 months in our household before he couldn’t stand the peace and quiet and refused to continue on the medication].
  10. Did a household member go to prison?
    No___If Yes, enter 1 __  [ No ]

Now add up your “Yes” answers: _ This is your ACE Score


It turns out that as the ACE score increases, so does the risk of chronic diseases, social and emotional problems later in life.
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To continue the topic for scoring, one summarizes the scoring as follows:

What’s Your ACE Score? (and, at the end, What’s Your Resilience Score?)

There are 10 types of childhood trauma measured in the ACE Study. Five are personal — physical abuse, verbal abuse, sexual abuse, physical neglect, and emotional neglect. Five are related to other family members: a parent who’s an alcoholic, a mother who’s a victim of domestic violence, a family member in jail, a family member diagnosed with a mental illness, and the disappearance of a parent through divorce, death or abandonment. Each type of trauma counts as one. So a person who’s been physically abused, with one alcoholic parent, and a mother who was beaten up has an ACE score of three.

There are, of course, many other types of childhood trauma — racism, bullying, watching a sibling being abused, losing a caregiver (grandmother, mother, grandfather, etc.), homelessness, surviving and recovering from a severe accident, witnessing a father being abused by a mother, witnessing a grandmother abusing a father, involvement with the foster care system, involvement with the juvenile justice system, etc. The ACE Study included only those 10 childhood traumas because those were mentioned as most common by a group of about 300 Kaiser members; those traumas were also well studied individually in the research literature.

The most important thing to remember is that the ACE score is meant as a guideline: If you experienced other types of toxic stress over months or years, then those would likely increase your risk of health consequences.

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The focus on the ACE scoring that I find most interesting is how “toxic stress” is defined to highlight impacts on your health.

While I don’t consider my ACE score particularly high based on the questions asked, it’s the focus on resiliency which really captures my attention.

I consider myself extremely resilient.

But, considering the fact that my first chest surgery occurred at about six months old, and involved breathing issues due to a physical deformity involving my chest and ribs, as my bones curved inward, endangering my lungs and heart and preventing proper growth as I aged, it comes back to a whole chicken vs. egg question for me.

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Looking at this score image in particular, focusing on COPD, throws the entire dynamic into the trash bin for me.

If I started life with a birth defect, and the inevitable evolution into COPD is a foregone conclusion if I lived long enough to wear out my body, then the ACE score has no relationship on my likelihood of contracting COPD.

This is one of those kitchen sink analogies where everything impacts one’s quality of life and rate of illnesses, negating the value of the cause and effect study for me.

So many people with horrible childhoods are hale and healthy into old age, so I’m going to lump this into the, “if you only have a hammer, then everything looks like a nail” theory.

So, let’s look at the resiliency scoring from another study:

Aces Too High

RESILIENCE Questionnaire

Please circle the most accurate answer under each statement:

1.  I believe that my mother loved me when I was little.

Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True

2.  I believe that my father loved me when I was little.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
3.  When I was little, other people helped my mother and father take care of me and they seemed to love me.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
4.   I’ve heard that when I was an infant someone in my family enjoyed playing with me, and I enjoyed it, too.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
5.  When I was a child, there were relatives in my family who made me feel better if I was sad or worried.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
6.   When I was a child, neighbors or my friends’ parents seemed to like me.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
7.  When I was a child, teachers, coaches, youth leaders or ministers were there to help me.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
8.  Someone in my family cared about how I was doing in school.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
9.  My family, neighbors and friends talked often about making our lives better.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
10.  We had rules in our house and were expected to keep them.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
11. When I felt really bad, I could almost always find someone I trusted to talk to.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
12.  As a youth, people noticed that I was capable and could get things done.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
13.  I was independent and a go-getter.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True
14.  I believed that life is what you make it.
Definitely true         Probably true         Not sure         Probably Not True        Definitely Not True

How many of these 14 protective factors did I have as a child and youth? (How many of the 14 were circled “Definitely True” or “Probably True”?)   [ 8 ]
Of these circled, how many are still true for me?  [ 8 ]

Do they know?

 

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I’ve been trying to figure out a way to say all that’s on my mind, and I’m stumped.  No one wants to be a Debbie Downer, but the passing of others from our lives, regardless of how on the periphery they may have been, is something that should be dignified by others notice.  Others consideration.  Others contemplation of what awaits us all when we finally retire from this mortal plain.

I started the day with a reference to “Cadence” in a beautiful story about Sam in a coffee shop named Cadence.

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Silly me, I had hoped it was about my former employer, a software manufacturer named “Cadence”, and I eagerly looked into the story about Sam, envisioning someone talented working  as part of the kitchen staff of my old employer, now relocated to somewhere in Utah.

Instead, I found some old writings about a coffee shop, located I know not where (yet), and in reading other blogs by the author, Shannon, I read about “George”, a seemingly homeless or very much marginalized man who was struggling with stomache cancer and no meds to help him eat, way back in 2016.

I know it’s silly to want to know what happened to George, as the odds are against him still being around, but these are the things I wonder about.

Yesterday, I went to my Better Breathers Class, and I found that a woman I’d enjoyed meeting with once a month for the last 2-3 years had also passed.  Linda Sloan was quite a character, determined to enjoy life despite her situation, and I heard about her two cats every month.

Now having it confirmed that she had passed, I wondered about the two cats and how they were doing.  I tried to track down her obituary and that of Hiroko, who passed at the end of February.

While Hiroko’s husband and she were mentioned in a Florida obituary from 2006, upon the passing of her father-in-law, there was still no obit for Hiroko.  Her husband had stopped by to let her respiratory specialists know of her passing, but there’s still nothing in the newspapers to alert the wider world of her former chiropractic patients and friends about her passing.

Linda’s obit, unfortunately, was even sadder after I’d found it.

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No mention of friends, family or cats.

I don’t know which is sadder – the news blackout with no obit, or the very plain notice of Linda’s passing, without regard to her origins or any loved ones left behind.

Just a bit melancholy today, despite smiling at George’s dire circumstances and his upbeat outlook on life way back in 2016, “Oh I’ll be alright now!!  Got me some medicine to help me keep my food down!”

Our world is a snapshot of us convincing ourselves everything will be ok.  Regardless of the realities we face, we are resilient in our stubbornness.

 

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 was 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.

 

Thinking

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.

QUESTIONS:

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?

ANSWERS:

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, but I 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

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 http://www.VineyardColors.com for helping me address my ever present homesickness with beautiful images):

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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.

 

Welcome 2019

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My motto for 2019 remains the same as for 2018.  You’re not the boss of me, and I’m going.  Wherever.  Whenever.  However.

One of my favorite handicapped, housebound writers, livingInAlimitedWorld, has not returned since she left blogville on September 13, 2017.  Her blog, Two Rooms Plus Utilities, remains as a testament to her willingness to try and tell the world what she was going through as she dealt with all of her health issues – primarily, multiple sclerosis (MS) and fibromyalgia.

As always, I hope that she is well enough to thrive, and that her battle hasn’t come to its final end.  But, since I may never know the end of her story, I send out a positive thought that she may yet feel as a blessing if she’s traveled to whatever awaits us all after we depart this world.

As for me and 2019?  No clue.

Seriously.

My breathing health is steady.  I got through another period of fires this past Fall without feeling as awful as I did in 2017, so that’s a plus.  At this point in time, I’m not able to breathe well in the cold and chilly air, so I’m spending way too much time indoors, and cooking to stay awake, but I’m fine overall.

Sleeping too much / being too exhausted to do much still remains a problem, even though the numbers say that the quantity of sleep I’m getting is of poor quality.  Today’s numbers:

24 hrs measurement - 31DEC18

In the graphic above, you can see that  was in bed or napping 3 different times, and didn’t make it to a total of 8 hours.  6 hours and 34 minutes for January 1st is pathetic when viewed in its detail.

When we take it a step further, and drill down into the actual sleeping periods – let’s take the overnight period from 1:55am thru 7:31am – you can see how often the sleep was restless or outright missing as I had to get up to pee:

January 1st Sleeping pattern 01JAN19

It’s the need to pee and back pain that gets me up and restless every time.

I’m taking glucosamine to help the various pains in my body without depressing my breathing abilities, and that’s helping somewhat.  But, sleeping as a whole still remains a frustrating challenge.

2018 - DEC 10-26 Sleep

Looking over the past week, the numbers look good on the surface.

Sunday looks fantastic until you realize that Sunday was another “lost” day where I spent it mostly passed out, or up and down, exhausted, and trying to get some sleep.  On the surface I earned a green star for that day (i.e., fitbit thinks I got a recommended eight (8) hours of sleep), but given the broken up reality for that day, it’s not as good as it might otherwise be in terms of being refreshed and rested.

According to Coach Fittie, I was getting an average of 5 hours and 30 minutes sleep during any 24 hour period.

While I try and remain in bed during  night time hours, it’s not always conducive to sleep.  Either my feet are burning like crazy (who knew a sheet could feel firey hot?, or my back is killing me, or – worse – my liver is killing me.

While I found a really good NIH study on dietary supplements and what may or may not work longer-term for reducing my pain and improving my health, their findings are still inconclusive and are summarized as follows:

 * * * * * * * * * * * * * * * 

Reservatrol – 500 mg for 12 weeks may work.  Started that today, 01-JAN-19.

Green Tea Extract – it may help.  (I’ve taken it before, and may take it again.  We’ll see).

Coffee – may reduce fibrosis in the liver.  But, I hate the taste.  Is there a pill I can take?

Garlic – (GEO) garlic essential oil may help reduce diabetes and liver issues.  Will have to see if I can obtain something that I can take orally and not dislike the taste.  For now, I’ve switched my salts to “garlic salt” to help in a small way, and we’ll see what’s possible moving forward.

Ginger – may help with both fighting diabetes inflammation, as well as reducing hepatic triglycerides.  Will have to see if I can find Ginger as a dietary supplement and in a quantity sufficient to improve my liver functioning and reduce my pain.

Vitamin D – the same NIH study indicates that shortages of D3 may present problems with immunoregulatory roles and contribute to insulin resistence and NAFLD (Non-Alcoholic Fatty Liver Disease).  Luckily, I’m already on a dose of two (2) vitamin D3 pills a day to help with my lack of energy due to the COPD, so I think I have that one covered.  For now.

Cinnamon – used to take this daily, and they believe it it helps with post-prandial intestinal glucose absorption and significantly decreased homeostatic model assessment index, but there is no clinical evidence to back it up.  I’ll skip adding anything more to the dietary supplements until after I see the Liver Doc in early March, focusing all my efforts on the Reservatrol to hopefully show a marked improvement in my enzymes.  But, I have got to find a better choice for the supplement than the horse pills I am currently taking.  3/4″ long, and wide, is just too much for me.

Curcumin – took it for almost a year prior to getting so sick on Metformin.  We’ll see what the numbers are when the Liver Doc next tests my blood, and decide at that point if I’m going to add the circumin back into my dietary supplements.

Quercetine – No studies to back up its efficacy in humans, but it’s supposed to help fight obesity and diabetes, so we’ll see if I start taking it at some point.

L-Carnitin – 24 weeks of this supplement showed marked improvement of liver function, plasma glucose levels and lipid profiles.  May try this later in the year if the pain in my side is not improved.

 * * * * * * * * * * * * * * * 

I’m not a doc, and I don’t pretend to be one, but I do know that we are each our own best advocate when trying to figure out how to thrive to our best ability in this old world.

All my current efforts are being spent trying to get ready for a family cruise in March.  I really messed up my ribs / dealt with right side pain during my trip to Seattle and Oregon  in September, and that has me a little leery about remaining well enough during this trip to handle the rigors of travel.

As I’ve said repeatedly to my lawyers and the insurance company – I can be sick anywhere, and traveling helps me keep my sanity.  I am really hoping that I am well enough to get through the cruise without any pain or drama, and that I will be well enough to travel back East in the Fall to meet my newest grand niece or nephew (due some time in March), as well as meet their older brother, who will be ~2.5 to 3 years old by the time I finally get to meet him.

Life goes on, and I have a lot to be thankful for despite the troubles and political upset in the world.  Things could be much worse for me than they are, and I try to remain thankful for my blessings while also watching another COPD friend slowly lose his battle to this disease.  Too many of my real world and internet world friends are in and out of the hospital, and I am thankful every day that it hasn’t yet come to that for me.  Hopefully, it never will.

Despite my lack of consistent energy, we opened three (3) new cooperative artist booths at retail locations this year, and I hear that we kicked butt at the art gallery location over Christmas.  Having to shut down our original booth the day after Christmas was sad, as we’d been with them 15 years, but change is a part of life and I am fortunate that we’ve been able to bounce back with all the changes that 2018 presented.

So, I’m heading into 2019 full of way too much fudge and other goodies, and trying to stay busy despite the challenges of a tight budget and no ability to master self-control.

We’ll see how it all goes, given time.

Happy New Year !  May 2019 be all that you could desire.

Hibernation time

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Winter is the toughest time for me.  I spend way too much time freezing, hiding in bed, and contemplating my end.

Seriously.

Everything is cranky on my body.  Sleep is anything but refreshing.  The wet and cold weather leaves me trapped in my house.  (Just to illustrate my cold weather reality).

Because I have more time on my hands to contemplate my navel, I also struggle with more philosophical concepts, and tune in to the anxiety and fear online as everyone airs their issues.

Trapped, I listen to more musicals, and I spend time creating jewelry, or sewing or whatever – despite the pain of arthritis in my hands – because I need to find a way to remain distracted in a heathy way, and not make my health issues worse.

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I’m a firm believer in the fact that I don’t have any answers, don’t know what happens after we leave this earthly realm, and frankly, I don’t want to spiral down into other people’s certainty and fears.

I have a bunch of friends, all variety of Christians, who all feel some aspect of “God’s gonna get ya” if you don’t live by whatever flavor of His Word they follow.  I’m not knocking their faith, as my viewpoint has always been, “I don’t know.  Let’s deal with what’s in front of us without getting all philosophical and ignoring the real life issue which needs attention”.

Not a put down.  Not a debate over belief systems.  Simply a focus on things which I might be able to impact in a positive way.

Some of my friends, though, are upstanding members of the, “get one for Jesus” camp, and their writings about end of days, satan among us, and postings of one depressing thing after another (missing or abused children or pets being their favorite topics), are absolutely Debbie Downers.  Not because I know all the answers, but because – if their version of faith is right – we are the evil we see in the world, Satan is fermenting unrest and violence, and God’s gonna get me if I don’t reform my wicked, unbeliever ways.

It’s like a drumbeat in the back of my brain, fighting my normal rationality and placidity, and kicking me when I’m down and trying to stay upbeat.

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I know it’s my Catholic upbringing fighting my rational brain, but it’s especially hard to silence that voice in the depths of Winter, when I’m trapped in my head, just trying to hang on until a better day comes.

I can’t explain it to my rabid Believer friends, but I’ve never been a sycophant, begging for scraps of attention from anyone.  It’s just not in my nature to kiss the ring and be grateful that I am allowed to live another day.

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Being homeless in 1996, for 3 weeks after the local utility company blew up my house, was one of the hardest things I’ve ever dealt with in life.

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Rather than kiss the ring in gratitude for being alive and only losing stuff, I was angry.  Immensely angry.  Anger is my go-to emotion, as anger gets things done and allows me to move on.

But, anger isn’t healthy for me physically.  Strong emotions – excitement, happiness, anger – whatever – can trigger breathing problems.  So, I’ve worked hard to cultivate my mellow, and to keep busy so that I do not have enough time on my hands to contemplate the cruelty in the world, whether or not something is “fair”, and to try and curb my daily anxiety for knowing things are chaotic, and one false move (or, the fickle finger of fate), could send my status quo to the ether, blowing up my semblance of stability and putting me in the midst of the fight of my life.  Again.

To quote one of my Mom’s favorite life coaches, Iyanla Vanzant, I recognize I’m in my head without adult supervision, so I do what I can to focus on the short term and stay out of trouble.

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Yesterday, I did the right thing, cancelling a pedicure appointment (medically necessary due to diabetes), and I spent all day nagging myself to death for being a wimp and not going out in the crazy rainstorms we were having.  I slept way too much (hibernating to that degree is truly how I get through the Winter, even if I know lying around all day is bad for my overall health and wellness).  Restless at night, in more pain from sleeping the day away, I spent money I shouldn’t have, running to the store for baking supplies, and kept warm in my tin can home by cooking fudge for a few hours.

Fudge I know I’m not supposed to have, but justified “sampling” as reasonable to prepare in advance for next week’s show as we also got permission to sell to my home baked goods in addition to our jewelry.  It kept the house warm.  It distracted me.  And, I could justify the warmth from cooking vs. turning the heat up higher to thaw out and wondering how much the utility bill is going to cost me this month…  did I mention I hate Winter?

Anyway, what started this blog is a topic I’ve been avoiding for a few months.  I’m drowning in anxiety, and the whole Jesus-is-the-reason thing as the holidays approach press all my buttons further, as I have too many good hearted people in my life who feel Jesus is the answer to everthing, including a stubbed toe, and are certain my health would be better and all my problems would magically disappear… if only I was a Believer.

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I’m drowning over here, but I’m not going down without a fight.  Winter will pass.   I’ll keep trying to find the good in the world while waiting out the passage of the seasons and our current political order. I’ll keep busy.

At the end of the day, I have everything I need, if not everything I desire, and I’m doing ok.  I just have to keep reminding myself of that truth.

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