Justification for idleness

Print  vs.  Birdy Comfort

I’ve been struggling with what I will say to the lawyer and my therapist when I tell them that I’m planning to go forward with my trip to the UK.

In the case of my lawyer, his edict is, “Sit and breathe.  If you can travel, you can work.  So, sit and breathe”.

In the case of my therapist, her challenge was, “You don’t want to work anymore, right?”

I’ve been struggling with the diplomatic answer to both of these situations that’s both truthful, as well as grounded in reality.

In my case, my employer’s health plan WILL pay for a lung transplant, possibly, if I chose to go that route.  My doctor has told me to explore a lung transplant as my last remaining option.  I choose not to go that route.

– fear of rejection of the transplant

– fear of high costs for anti-rejection medicines after the transplant is done

– fear / belief that I will likely be dead in 3-5 years if I continue as I have been doing regarding treatment choices

– fear / belief that I will likely be dead in 3-5 years if I move forward with a lung transplant.  Note – 70% of lung transplant patients are dead by the 5th year following the surgery.  A 30% success rate and a high out-of-pocket for medical costs is not my idea of good odds.

In my case, my employer’s health plan WILL NOT pay for stem cell treatment.  And, with my doctor’s backing, that’s the route that I feel holds the most promise.  Potential cost:  $13k, with an unknown number of treatments required, and with an unknown level of after-care medications that I may or may not be able to tolerate.

– confirmation of lots of pain being involved following the surgery

– confirmation that, if the treatment works, it’s worth the pain

– location of a clinical trial, which concludes in 2017, and more information being available for a stem cell treatment if I choose to use my own money to pay for it.

In my case, my employer’s benefit plan has also REFUSED TO PAY MY MATCHING SALARY benefits, stating that I’m not sick “enough”, even though my level of capacity is clearly met by both the state and federal guidelines for this illness.  And backed up by the fact that I had 3 car accidents trying to push myself with a regular schedule for a busy, 55 year old woman with this disease.

So, at the end of the day, if I only have 3-5 years of quality of life left (quality of life includes being put on oxygen, or end of life issues), I want to travel.  I can be sick anywhere, as long as there is transportation which includes other people getting me here and there and back again (planes, trains and automobiles or buses).  I can sleep anywhere, and often do.  But, I want to look out my bus window or hotel window and see all the places that I’ve read about and had on my bucket list.  I want to share this with my business partner, and I’m willing to take the risk to not get my matching benefits because I know my time is very limited.

The counter argument to all of this, though, is this:  If my employer paid my matching salary benefits as promised (roughly $60k per year), I would do BOTH.

I would book that trip to go and see the UK and do the trip that I’ve promised myself to do following my Australia adventure, AND I would use my matching salary benefits to pay for the stem cell treatment (presuming that it’s approved for me), and go back to work if I were then well enough to do so.

55 is way too young to retire (which is what Disability is, in effect).

55 is way too young to give up on dreams and aspirations, and simply sit and breathe when one’s body is still able to do more than that.

But, as I sit here packing to move, while also dealing with time-specific nonsense from my landlord, I am reminded that I can do anything as long as I can nap.

Naps helped me hide how ill I was my during last year of working, as I let the house go in terms of cleanliness and clutter, and just concentrated on putting one foot in front of the other to get through my work obligations.

But, after the car accidents, it was clear that naps were no longer sufficient and that something had to give.

Am I regretful that I’m living on a pittance and unable to work to earn more money without jeopardizing that pittance?  YES.  A thousand times yes !

But, I’m also a realist.  If I can’t keep up, and I worked to earn these benefits, it’s up to me to secure them so that I don’t end up homeless because I lied to myself about my capabilities.  Anyone can be sick on vacation and come home to their lives as they left them.  Or, to their funeral if they get sick enough.

But, if one has a chronic illness that jeopardizes one’s financial security, one would be a fool to risk working (and hurting others through misjudging their capabilities or capacity to endure the requirements to be delivered) if that meant that one might end up fired, and then homeless and poverty stricken.

No answers here, but that’s the best I’ve been able to do to elucidate my viewpoint on why I’m picking the priorities I’m choosing.  Travel first (eat desert first), and then use the rest of any savings I may have to pay for the stem cell treatment if it looks like a match for my health situation.  Priorities.  Priorities.  We all make different choices.  Those are mine.

False Limitations.

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I have tons of things to get done, and not enough hours in the day.  Add in a heat wave, and my productivity drops even further.

What people looking at our lives from the outside don’t seem to understand is rationing of our time to only “required” tasks, imposing false limitations.

Suddenly, because we’re dealing with a chronic illness, we’re not allowed to find joy any more?  No more travel?  No more permission to have fun?

I find this imposition of false limitations from outside my tiny world incredibly aggravating.  I don’t owe anyone an explanation for how I’m doing on any given day.  And, unless you’re my landlord, I don’t owe you an explanation for what cluttered shape my house may be in when you spring an unexpected inspection on us.

As I was having a great big old pity party for myself, I found this other posting on Chronic Illness that talks about similar issues, and how to do more with less energy.  Interesting reading if you have a moment to check it out:

Chronic Illness and Pleasure Scarcity

Today, I’m doing the dishes.  Packing.  Battling the latest Ant infestation.  Packing.  Dying of the heat.  Packing.  Cleaning and organizing.  And, generally exhausting myself in order to satisfy some crazy landlord that I don’t want to deal with anymore.

Oh, and my tomatoes appear to have a lime insufficiency.  Or calcium.  Or epsom salts.  Something to make the bottoms of the plants turn brown.  Or, I’m just not picking them soon enough.

Whatever it is, my chorelist is long, and my patience is low.

So, I don’t have much to say that isn’t crabby.  Hope your day is going better than mine.

 

Chorelist

exercise

I’ve got an endless chore list right now, and I’m feuding with the landlord even though my home purchase hasn’t yet completed.

Sounds like I can’t get out of my own way, right?

Pretty much.

I was notified that the landlord was going to be doing property walk-thrus on Thursday and Friday of this week, and instead of listening when I told them that they did more damage than they ever fixed, plus the fact that I’m planning on moving so they should stay out, they decided that they will come anyway.  On Wednesday.  A day earlier than planned.

Lovely.

The house is a mess.  Boxes everywhere.  Supplies for this place being boxed up to move, plus newly-purchased supplies for cleaning the new place being prepared…

Add in an ongoing battle with Ants, and you’ll have an idea of what I’m up against.

Don’t have much to add, except that I thought the above cartoon was funny when SparksFromACombustibleMind posted it, so I applied it to this situation.  I feel like my landlord is a member of The Borg, “Resistance is futile…”

 

Thoughts for COPD Success

Print

This is the trip I’m planning to take in 2017.  With or without the lawyer’s permission.

Will I be tired?  Absolutely.  Will I nap a lot while others get me from place to place?  Absolutely.  Does that ability to travel mean that I cannot be as sick as the numbers state that I am?  No.

There is a huge difference between negotiating multimillion dollar deals, maintaining a 14-15 hour daily schedule for days / weeks / months on end, juggling facts and figures, using diplomacy and tact, in order to complete a time-sensitive deal,  than in what’s involved in taking a vacation while ill.  I can be ill anywhere.  Being ill sucks. But, if the scenery outside my window changes to show me something new, to occupy my tired brain, that’s a good thing.  Anything to keep me in a healthy state of mind and not depressed is a good thing.

While the lawsuit, “Jenkins v Price Waterhouse Long Term Disability Plan, LLP” terminated matching salary benefits for someone who traveled while ill, claiming that he was well enough to work and did not try to do so, it does not take into account all those people who travel for “Make a Wish” lifetime events as they work through their bucket list to complete their various goals, funds permitting, before they pass away.

In my case, if I was being paid my matching benefits, I’d be making arrangements to have the stem cell treatment that my health insurance won’t otherwise cover for costs.  If the stem cell treatment worked out, I’d then be feeling better (and able to document that improvement) such that I could re-apply for work under some sort of protected status while we see what’s possible for me to do and if the exhaustion related to my COPD would be greatly reduced.

There’s a financial aspect to this whole thing that no one is considering.  Working is wonderful.  I am a highly-compensated worker, with a 6-figure annual salary, bonuses and profit sharing.  As is any worker who falls ill, I am protected from being forced to work at a job that will pay me less than 80% of what I used to earn.  I value that protection, as forcing me to earn a living that will exhaust me / kill me faster, for any level of minimum wage, is not reasonable.  I worked hard for those benefits, and I should be able to use them now that I need them.

However, since I’m not being paid my matching benefits, I’m focusing on doing everything that I can do to achieve my travel goals outside of the USA prior to my money (and my health / mobility) running out.

I know the lawyer’s not going to be happy with my decision, but if I’ve only got 3-5 years left before I’m stuck sitting in a chair and breathing 24×7 until my lungs give out, then I want to get this promised trip in while the going is still possible.  Memories are what sustain us in our dark days.  My trip to Australia is one of those sustaining memories.

Having this trip to plan for gives me something good to hope for, and something to work for, when I’m having a crappy day and the battle to simply do more than breathe is getting on my nerves.

Yes, most days I look fine and can pass for normal.  But, most days I’m spending upwards of 15+ hours in bed, sleeping.  Or, in my car, napping.  Or, catching a few winks in chairs and couches anywhere I may be as I just don’t have the energy and endurance to go, go, go without a break.  When I go on vacation, it will be much the same.  Yes, I may miss a lot of scenery as I sleep on the bus while the English, Scots and Irish countryside passes by my window.  But, for those moments when I’m doing well enough to be alert and participate?  The trip will be priceless.

Should my benefit provider ever determine that it will meet the obligations it owes me, I will use that money to pay for my stem cell treatment in the hope that I can go back to work.

Until we reach that time, though, I’m going to continue to wait and see and apportion my money for activities that are of more interest to me.

Once I’m in my new home, and we see how the lawsuit is going, we’ll see if I can get some sort of seasonable job in the good weather that will help me stay engaged with the world.  For now, though, I’m waiting to see what the benefits courts will decide.

 

Self-pitying B.S. part II

(Yes, I digress, LOL).  If you didn’t read the first part of this blog for perspective, I recommend that you do it now.  Go ahead.  We’ll wait:

Self-pitying b.s.

The reason that I tell you all of what I did in the first blog is that I’m now going to tell you a sad story about entitlement and my calling bullshit on a friend when she’s talking in circles.

I met this friend through her sister, my very good friend and bowling partner, and while I try to be kind, I also find myself caught between the two sisters on occasion (and I never want one person’s friendship with me tested due to my friendship with the other – sibling issues are never easy !).

Here’s our morning’s circular conversation verbatim (although the names have been changed to hide who I’m talking to):

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(See, this is where I become “hard hearted Hannah” because I just don’t understand how someone can wallow in being unhappy and yet not do a practical thing in order to help get themselves out of the situation that’s making them miserable).

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(I’ve been told that I don’t play well with others.  In fact, that I don’t know how to “play” at all.  Well, when it comes to impractical thinking with real-world consequences, they are right.  I just don’t “play” on the important stuff.  Oh, and my spelling / grammar suffer when I’m in conversational mode – please ignore the typos).

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So, this is where we left the conversation over 2 hours ago, and I still sit here wondering at what I did wrong with regard to her pity party, and hoping that I did something right in terms of tough love to help snap her out of it.  I have hoped that I have been fair but honest.  Kind even, without justifying her pity party and continued poor decisions.

No answers here.  I just know that I can’t allow myself to be sucked into the spiral of someone else’s craziness.  It’s truly a contagion that I don’t want to deal with as I cannot afford the cost.

Grow up princess

Self-pitying b.s.

whatever

Let me just start by saying that I really am as practical and no-nonsense as it sounds.  When my family was going through a divorce, and we ended up homeless because Daddy Dearest wanted “his” money, even though most of his money went to beer and being out of work…  and sweat equity to barter labor in exchange for lots of my medical expenses.

Learning to tell the difference between the self-justifying pity parties we throw ourselves and what it takes to stand up and suck it up has been my reality.

When we were out for lunch on Friday, a friend’s husband was talking about his dysfunctional parents, and that he liked living in an orphanage in the 1950’s / 1960’s because it was more stable than being at home.  I can absolutely empathise.

My former boss, and the wife of the couple, was talking about how many thousands of dollars in debt they’d had to bail their children out of, and the topic came up for me that money was a sore subject in our house, and that everyone worked and contributed.  No one was “entitled” to anything because they helped out around the house.  Money and work were kept very separate from household chores.  And, any money loaned was always recommended to be money that one could afford to “never see again” as there was never a good time to be mixing family and money.

If one needed money for a legitimate cause, apply at the bank first, as they were the best weather flags about whether or not the loan was too risky to make and the likelihood of being paid back.

People, on the other hand, lead with their hearts.  If you can’t afford to help someone, then you don’t do it as you lose both your money and your friendship / family member respect, etc., so you just don’t go there.

My baby sis, the one who is refusing to talk to me because I’m trying to fix my baby brother’s grave site – a brother born before her, and who she never knew – is angry because she’s decided that Jimmy’s grave dispute doesn’t matter in today’s reality.  That the promise I made to my Mother to try and fix the grave ownership doesn’t matter.  Well, it’s not her call to make.  Because I’m saying, “stay out of it”, she’s not talking to me.  That’s her privilege, and not something I can control.

However, I tell you all that to tell you this… she’s crazy.  Sad but true.  She has the same entitled viewpoint of our father, and re-writes reality to suit her version of events.

Our father was kicked out of the home when she was 4 years old, and while I understand that she has abandonment issues, Baby Sis has got them because she never turned the mirror of self-analysis on herself to figure out if she liked the person in the mirror or not.  To find out if she had the courage to face herself, warts and all.  She’s still battling the fact that everyone leaves her, so she must not be “good enough”.  Nonsense.  We grew up and went on with our separate lives.  We all love her, just not enough to sacrifice ourselves on her viewpoint.

I get it.  I truly do.  I think she’s great as a person, even if she has a few wobbly spots (hey, we all do.  Me, specifically).

But, I can’t help her with her issues.  Each of us has our own bags we packed, and each of us cleans up our own mess at our own rate.  So, I love her.  I miss her.  But, I don’t chase her.

This sibling has accused me of terrible things (like theft of our Mother’s estate) even though the estate was 75% mine (and I got stuck paying the taxes as the money was first paid out to me, before I, in turn paid out 1/3rd to my brother and 1/3rd to my sister).  I stuck to the terms of the will, and not the terms of the “beneficiary” line listed on the assets and divided everything equally.

When our Aunt was living with me, I paid my own way (heck, it was my apartment), and any money I took from Auntie was reimbursement for stuff she had me buy her – believe me, I know my family, so I kept an accounting, including receipts (and it’s clear that any charges for fruits, veggies and the like were no way my expense, LOL).

However, in Baby Sis’s mind, I’m evil, so the narrative is that I also took $60k from Auntie even though Baby Sis has nothing but stories to lay that blame at my door.

Auntie may have spent $60k moving from FL to CA and then running away to NV.  Auntie spends an average of $60k to $120k per year in expenses and blown money, so spending $60k while living with me is not a surprising amount of money.  And, eminently provable, if one wants to do a forensic accounting of Auntie’s bills and look at the receipts I provided along with a spreadsheet.  But, logic has no place in Baby Sis’s view of life, so I’ve stopped trying to make her see sense.

I get it, money is Baby Sis’s god.  Again, not something I can help her with, as there are none so blind as those who refuse to see, to read the accounting logs of income and outgo.  Whatever.

But, this sibling also defaulted on a loan to our mother (getting back to the original theme of the story) and left Mom holding the bag as a co-signer on a loan that she would have never signed for the rest of her children.  Let that sink in.  She stole from our mother, justified it to herself as “reasonable” because she was a young mother with a baby, going through a divorce.  But, I’m the bad guy.

Unfortunately, Mom had huge guilt regarding this youngest baby.  She was self-hating herself as a failed mother and a parent for this youngest child because she kicked our father out for his philandering.  Mom hated the fact that she could not give her child the dual-parent home she thought she failed to provide, completely failing to see that it takes two to have a healthy marriage, and that the childhood provided to our older brother and myself was not without it’s challenges as cheating and mental abuse was a huge factor in how Daddy Dearest operated.

But, I tell you all that to tell you this.  Baby Sis is chasing the father who abandoned us, leaving sickeningly sweet things on facebook that drive me crazy (and I know I shouldn’t even look at his profile, but I do get nosy).  He rarely if ever responds.

Jacks 2015 birthday image from Ging without response

It’s sad.

He won’t give her the time of day and feels justified in claiming that he’s been abandoned by his children, when it was he who left us after the divorce.  He stripped our house of any assets.  He auctioned the house out from underneath us.  And he refused to pay child support (my Mom was too proud to seek alimony).  He is who he consistently was, and it is he who is still leaving the one daughter trying desperately to reconcile with him.

At any rate, I tell you all that to tell you this – my boss’s husband, the man who was shown zero care by his own parents, and who thought an orphanage was a great place to live, found it hard to believe that my Mom had her theory about not loaning money, and that I – a woman – was ok with that view of life.  Even though I moved in with her to care for her during the last year of her life, and paid $900 a month in rent (exactly what I’d been paying for rent in CA, and exactly what she needed to afford her medicines without stressing over finances).  He found it funny that my Mom was ok with me paying rent.

At the end of the day, people are amazingly resilient, and it takes all types to make this world functional. Absolutely no answers here.

Digress, Much? Endurance III

I started off this blog by trying to talk about end of life issues.  Instead, I’ve wandered through a friend’s struggle with end of life issues; Endurance.  I’ve also wandered through my own struggle with sex, romance, body image and sibling rivalry; Endurance, Part II.

But, I told you all of that to tell you this:  I don’t want to end my life hooked up to machines, alone in a hospital bed.

hospital bed

While I’ve made it clear that I don’t believe any one tenant of a specific religion, and that heaven is guaranteed to me if I do all the “proper” things in this life, I do have some hope that heaven exists, and that there will be “something” after this endurance on earth.

Horizon

As I’m watching others struggle with aging, dependency, aloneness and finances, I’m running through much of the same issues in my own life.  And I have to tell you, I am very sick and tired of the whole, “Dying Well” concept, as if there is some way we could FAIL at dying.  We need to get over ourselves and not be so focused on perfectionism.

Dying-Well

In my case, I’m wondering if it’s more like the film, “What Dreams May Come” for turning everything on its head that I thought I knew or believed, only to be confronted with some new form of reality.

In my viewing (and understanding) of the story, I thought the wife was suicidal, and that Robin Williams went to death’s door to save her, because ultimately he could not accompany her through that door if she was going to kill herself.

What dreams may come

What I did not realize until I read the Wiki today was that his character was already dead.

How did I miss that?  The summary of the plotline that sent this whole storyline on its head for me is repeated as follows:

***

While vacationing in Switzerland, pediatrician Chris Nielsen (Robin Williams) meets artist Annie Collins (Annabella Sciorra). They are attracted to each other, and bond as if they had known each other for a long time. They marry and have two children, Ian (Josh Paddock) and Marie (Jessica Brooks Grant). Their idyllic life ends when the children die in a car crash. Life becomes difficult: Annie suffers a mental breakdown and the couple contemplates divorce, but they manage through their losses.

On the anniversary of the day they decided not to divorce, Chris is killed in another car crash. Unaware that he is dead, and confused that no one will interact with him, Chris lingers on Earth. He sees Annie’s attempts to cope with his loss and attempts to communicate with her, despite advice from a presence that this will only cause her more pain. When his attempts cause more sorrow, he decides to move on.

Chris awakens in Heaven, and learns that his immediate surroundings can be controlled by his imagination. He meets a man (Cuba Gooding, Jr.) he recognizes as Albert, his friend and mentor from his medical residency, and the presence from his time as a “ghost” on Earth. Albert will guide and help in this new afterlife. Albert teaches Chris about his existence in Heaven, and how to shape his little corner, and to travel to others’ “dreams”. They are surprised when a Blue Jacaranda tree appears unbidden in Chris’ surroundings, matching a tree in a new painting by Annie, inspired by Annie’s belief that she can communicate with Chris in the afterlife. Albert explains that this is a sign that the couple are truly soul mates. Annie decides that Chris cannot “see” the painting, however, and destroys it. At the same time, Chris sees his version of the tree disintegrate before his eyes.

Chris laments that he can no longer see his wife and soon encounters a woman who he comes to recognize as his daughter Marie, living in an area resembling a diorama that she loved in her lifetime. The two share a tearful reunion.

Meanwhile, Annie is unable to cope with the loss of her husband and decides to commit suicide. Chris, who is initially relieved that her suffering is done, grows angry when he learns that those who commit suicide go to Hell; this is not the result of a judgment made against them, but rather their own tendency to create “nightmare” afterlife worlds based on their pain. Chris is adamant that he will rescue Annie from Hell, despite Albert’s insistence that no one has ever succeeded in doing so with a suicide. Albert agrees to find Chris a “tracker” to help search for Annie’s soul.

On the journey to Hell, Chris recalls his son, Ian. Remembering how he’d called him the one man he’d want at his side to brave Hell, Chris realizes that Albert is truly Ian. Ian explains that he chose Albert’s appearance because he knew that Chris would listen to Albert without reservation. Before they part, Ian begs Chris to remember how he saved his marriage following Ian and Marie’s deaths. Chris then journeys onward with the tracker.

***

In my version of the story, Chris was never dead.  He was always alive and always fighting to be with the woman he loved.  He was afraid of losing her to simple death, not the eternal damnation to Hell from her choice to suicide.

New reality  What_Dreams_May_Come_-1998_Underrated-_Forgotten-DVDs

I remember being fascinated by the alternate reality of his journey, where he sees his daughter in the lovely young asian woman.  Where he realizes that he sees his son in Cuba Gooding, Jr.’s character.  All this time, I thought he was in a coma or something – I was completely clueless that his character had died and was working his way through his own version of what happens next.  Heaven vs. Hell and Eternity or Reboot.

Sort of living a “happy thoughts”, “Happy THOUGHTS!” Tinkerbelle moment which shapes the reality yet to be, versus dealing with a “heaven can wait” kind of storyline for one man coming to save the woman he loves from eternal damnation.

I don’t know how I got such a lovely story so drastically wrong in the observation of it – my only excuse is that that paintings and cinematography were so compelling, and my Mom’s own fascination with this story within her own end-of-life drama distracted me into watching her for clues of why she loved the story, vs. paying attention to the plot itself.

As I’m dealing with my own COPD journey and end of life issues that touch on estate planning, financial security, right to die choices, unresolved issues with siblings, family, friends and lovers, I just know I have no answers but hope that the journey continues into someplace beautiful and worthwhile.

Birdy Comfort

And that any pet I’ve ever loved who loves me back will be happy to see me when I show up.  Because if I have to go on to the next world and deal with more of this petty humanity b.s., I’m going to have a serious bone to pick with whomever’s in charge.

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