Breathing Room

Starting 2016 off with a few thoughts from the last couple of idle weeks.

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My hometown has gone from 75 degree weather on Christmas Day, to the picture above as a major Winter storm has begun to coat the northeast region in its more customary whiteness.

Due to my birth defects impacting my health during inclement weather, and my preference to stay away from the grey and freezing Winter  wonderland, I left Massachusetts in 1985.  I usually only visit in the Summer, as being in the woods and near water is challenging, but being in the cold and raw is life threatening.

The one thing that has been wonderful about this change in my health for my worsening COPD is the ability to hunker down indoors and avoid all things rain / weather related as we go through our annual change of seasons in California.

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This painting by Susan Blackwood represents the drier, farming and more rural area that I’m hoping to be able to move to at some point during this end of life / financial stabilization process for the next phase of my limited income / fixed income life.

Everything is greening up with the Winter rains, and what amounts to Spring in these parts is slowly replacing our normally ochre, wheat and burnt siena colors with chartreuse, yellows and woody greens.

While my health doesn’t allow me to do much in Mother Nature without consequences, it’s lovely to watch it flying by my car windows as I travel between my home and places that I’m able to visit.

This year has been an amazing time of change for me. During 2015, I’ve learned to listen to the limitations of my doctor about not pushing it for more than two hours, and I’ve learned to keep a sweatshirt in my car (instant pillow) as I’ve become a champion car sleeper when I run out of stamina.

When there is the luxury of unscheduled time and flexible scheduling, I find I can get things done despite my exhaustion, so long as I take a break and sleep when my body tells me to stop.

Of course, being paranoid, the car must be immaculate.

I am still wary of being rousted for sleeping in my car, as happened twice when I was still working and didn’t have enough energy to complete the drive home without a nap for safety reasons.  Nothing is more alienating than a cop rousing you from sleep when you’re safely (and legally) parked at the side of the road.  Very unnerving.

As I prepare to enter 2016, though:

  •  The State has agreed to support my doctor’s disability recommendation, and my next fight for the new year will be back pay of benefits owed from my employer / their insurance agent
  •  I’ve found a great lawyer, if this next round of arguments aren’t successful to get me onto the Federal disability plan for longer-term breathing room, so
  • I can concentrate any free time on researching the various experimental stem cell treatments which might improve my quality of life and allow me to return to the working world, even if only part time or on a limited basis.

It’s too soon to tell how it will all work out, but I’m ending 2015 on a hopeful note as I prepare to embrace the possibilities of what lies ahead.

Hopefully, we can figure out what’s happening with the circulation in my right arm, and I’ll be able to make jewelry or type for more than an hour without painful repercussions.

Breathing room is giving me the space to keep my psyche calm, and the short term disability funding approval gives me hope that I won’t be homeless any time soon.

I hope 2016 can be everything you could desire, as we move into the new year.

Aging in Place

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The biggest challenge this week has been listening to “Being Mortal” by Atul Gawande.  While I can appreciate why my talk therapist / life coach asked me to read this prior to our next session, the information imparted was something I’m highly familiar with and would have chosen not to revisit in such depth.

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I grew up in a household of a talented, yet ner-do-well father, and a hardworking, 2nd class citizen mother.

Fear of poverty and homelessness has been something I’ve lived with and fought aganst my entire life.  One can’t let one’s fears get the better of them.  Listening to the book, though, has stirred up all my anxieties.  Fighting with my employer about sick pay benefits owed with zero income coming in is not helping to reduce those anxieties.  The story is a great retelling of questions and answers one needs to think about before the end is upon one, however, it’s also told from a wealthy, there’s plenty of money viewpoint which is not at all helpful from my point of view…

Though my income doesn’t compare to that of my sister-in-law, who could single-handedly feed and house a small village on her annual bonus alone, I’ve done ok taking care of myself.

Due to my underlying birth defects, I’ve never been one to expect to live this long – even though moving to sunny and dry California from damp and chilly (or humid and intolerable) Massachusetts improved my quality of life, and, exponentially, my longevity.

I’ve pretty much been a short-term thinker because my life hasn’t been stable.  Fires, floods, explosions, family illness, whatever.  I’m a roll with the punches kind of gal, and I focus on being satisfied with knowing I’m doing the best I can to survive, and have generally done ok, regardless of the short-term challenges.

That being said, though, my efforts to replace my retirement income after cashing out my 401k in 2011 (family issues) was largely successful, and I got it back up to $77k in a little over 3 years.  I live VERY frugally.

The cost of this little sortie into qualifying for disability, though, has been scarily expensive.

Having the tax guys freeze and scoop some of my money – again – (I don’t know why) has also added to my anxiety.

The $24k I took as loans from my retirement fund is dwindling, and I still don’t have a ruling one way or the other from the state about whether or not my disability will be approved.

Poverty is looming closer and closer in my future, due to my current health reality, so reading, “Being Mortal” and learning about how hopeless end of life situations may be is not helping my frame of mind.

Medical tests, urgent care visits, physical therapy, talk therapy, second opinion doctors and stem cell treatments to be considered, etc., etc., etc., are draining my immediate cash, as well as making me focus on the bad news potentially in my future if I don’t get approved for disability (to have some money coming in).

Yesterday, I went to jury duty because the only way to get out of it was to have my doctor sign off their medical excuse paperwork (another $133 office visit).  While I was lucky to be excused in a couple of hours after being called because the case settled, I worry that the fact that I chose to save $133 will be used against me should my employer determine that my failure to protest shows I’m well enough to work.

With all of this in mind, I can also see that there are very few “aging in place” options for people who don’t have buckets of cash in either stocks or the equity in their homes.  I prefer to live in apartments, and my crazy landlord has raised the rent continuously since I moved into this dump.  While I have spent my own money to rehab it, slightly, I’m rapidly approaching the point where I’ll have to leave all my friends and quality of life pleasures to consider moving into some backwater that I can afford.  Or, go back to work and hope that my health will allow me to keep up and not be fired.  Scary options, whichever way one looks.

While I had been thinking that the California Death With Dignity Law would give me sone humane options to plan a reasonable end via euthanasia, the reading of the law shows that it’s mostly for wealthy people given the number of hoops one has to jump through to exercise that option (and who knows where that cash would come from?).

No easy answers here.  I’m taking the zoloft for my perimenopause hot flashes, and I think it’s playing tricks with my thinking.

I am tired and napping more since I started that medication, but I can’t tell if it’s the meds alone, or if it’s also dragging me down to deal with this lingering sinus infection.

I haven’t been to the YMCA for almost a month (the toenail surgery kept me out, and now the congestion is keeping me from exercising) and I am desperately in need of some gentle exercise to help get my head on straight again.  Sleeping sitting up in a chair is helping to keep me from drowning and coughing my head off, but the related lack of a sound night’s sleep doesn’t help either.

Hopefully, the skin doctor will check my leg tomorrow, where I had the cancer surgery in 2013 and dismiss the lump as a keyloid vs. a return of the cancer.  They won’t let me do the stem cell treatment until I have been cancer free for five (5) years, worst-case, so I have my fingers crossed that I’ll get good news tomorrow.

If I want to age in place, since I’m a single woman and not a homeowner, I need to be able to return to work to build up my emergency fund.  To do that, I need disability income, and a chance to try the stem cell therapy.

Fingers crossed that tomorrow will improve my spirits.

For now, I’m going to go listen to an escapist storyline, and hopefully stay awake enough to get Christmas cards written or more jewelry made.  This sleeping all the time is for the birds !

If you like were-animal stories, I recommend this one:

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Who knew Harlequin was involved in it’s publication?  Let’s hope the audiobook is as good as the novel.  (The narrator makes a huge impact on how well the story translates to an audio version).

Being Mortal

I will give no hostages to love, refusing to foster the obligation to care for me (or debate my healthcare choices) as my COPD worsens.

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As we’re going through the process of getting to know one another to see if we’ll be a match for life coaching / change management / grief counseling (the COPD resources recommended a talk therapist as part of the care team one should have in their arsenal for dealing with quality of life / end of life issues), my therapist recommended that I read this book so that we could talk about it in our next session and get to know each other better.

So, I’m working my way through the book (audio version, since my eyes get too tired to read much at this point), and I’m not finding a lot that’s surprising.

Basically, doctors and mainstream America seem to feel the responsibility to provide “life at any cost”, and our nursing home system has tried to automate the care of our elderly to regimented schedules vs. when the care might actually be helpful (i.e., helping an elder to the bathroom 20 times in a day, vs. putting them on a schedule (which fails) and then moving them into a diaper as people’s bodies have their own schedules).

These are all things I know, having spent most of the first 5 years of my life in and out of hospitals, and experienced the “inconvenience” of my body’s desires and needs at the not-to-tender mercy of good and bad nurses and doctors.

Due to this first-hand exposure to the best and worst of human nature while in the trenches, I have willfully chosen to remain single, refusing to give into the expectation for momentary companionship which evolves to becomes a socially accepted obligation.  I want no one dragged down by the bonds of love or duty at my side when my final journey is at hand.

I have willfully chosen to move away from my family and their extended bonds of obligation, knowing first-hand how poisonous obligation and love can be when dealing with the reality of a handicapped, frail or disabled loved one.

I’ve seen too many familial bonds turned to torture for the surviving spouse and children, and so I made and kept a promise to myself to always be independent so that my final hours, whenever they may be, are a burden to no one who doesn’t choose to be there, even if it’s for some reason as practical as a paycheck.

That’s not to say that I haven’t and don’t have friends and lovers, but merely to underline the refusal to tie them to me through entitlement brought on by the demands of physical frailty.

Everyone makes that final journey alone, regardless of the family and loved ones who surround them, and I guess that I’m a little more cold or honest in my acceptance of those limitations.

As discussed with the talk therapist this week, I want “palliative care” vs. aggressive care.  My body, a refurbished and dilapidated carcass, is doing it’s best to keep on humming along, and I want no extraordinary measures (such as a lung transplant) when the end result could be worse health than I enjoy right now.  Society, however, doesn’t know what do to with me because I don’t fit neatly into the box of what an ill or old person should be.

Palliative care is rarely discussed, and almost seems to be treated as a “cowardly” choice for someone my age.  No, I’m not suicial or depressed, just practical and tired.

I’m only 55, and statistics say that a healthy person my age, a woman, could live to at least 80.  What the statistics forget is that I’m not a healthy woman.  I’ve never been a healthy woman.  Why waste time regimenting my life based on a theory – optimum health – that has NEVER been my reality?

No answers here, however, our next appointment should provide some stimulating conversation (and I might even find out what happened to her right eye, which is a bit sqinty and misshapen compared to her left eye).  Yes, I really am that nosey – I want to know more about my therapist and her motivation and world view than having the talk therapy appointments be a 1-way, narcissistic conversation that’s all about me.

Anyone else read this book and want to weigh in with an opinion on what end of life, aging in place, independent-yet-supported care options should look like?  All while being affordably priced?  (Yes, that was sarcasm. in America, I get the impression that we’d love to dollar store the care costs for our infirm and aging population).

Feeling the burn

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I’ve been gone from blogging for a bit while I was busy in the real world.

Physical therapy has proved interesting, and I’m doing what I can to perform the exercises daily, while being convinced that they won’t make a difference as I think the problem is arterial and related to a damaged blood vessel. Time will tell who is right and who is wrong about the therory as to the cause of the arm pain, and its best resolution.

Talk therapy is a bit more challenging, but I’m finding it interesting naval gazing, so I’ll keep up with it once a month or so until my health situation stabilizes.

The exhaustion continues, as illustrated by my being in Las Vegas, not gambling, and in bed by 8pm.  Sad.  Just sad.  But, I’m taking breaks when I must and made the trip driving back and forth from the San Francisco / Bay Area, so it’s nice to know I can still push myself with no dramatic ill-effects from the worsening COPD.

#1 Nephew is doing well with his own business, and I love reading his fitness coaching articles here in blogville.  The boy is very talented and pursuing his dreams in sports medicine, and I couldn’t be prouder of him.

Busy dealing with various fights on a number of fronts, including Jury Duty next week, so I’ll be back as time (and this lovely, energy-sapping headcold) permits.

Happy Holidays, Feliz Navidad, Joyous Noel, Happy Kwanza, Happy Chanukah, Happy New Year !