Won’t back down

C’mon, sing it along with me,

Wont back Down

♫ ♪ ♫ You can sound the alarm
You can call out your guards
You can fence in your yard
You can hold all the cards
But I won’t back down
Oh no I won’t back down ♫ ♪ ♫

I have been sitting here all afternoon, channelling Tom Petty with his mad-at-the-record-company attitude problem mantra, “Won’t back down”, and trying to figure out the books from this past weekend’s show.

Frustrating.

Frustrating in the extreme, since I’m very aware that loss of cognitive abilities or short-term impairment can happen with COPD.

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Since my job involves reading contracts, assessing risk and developing strategic goals to accomplish my employer’s agenda, it’s this loss of consistent ability to think clearly that worries me.  Profoundly worries me.  Especially since tiredness aggravates my ability to function with lack of oxygen.

It’s also one of the things that took me out of work – my fear of being unable to do my job consistently, and be a top performer with reliable skills to deliver results.

Yesterday and today have been one of those days where my cognitive abilities are just not on target or reliable.  Physically, it took me an hour to unload the car and get it all into the show.  I did ok physically, despite being tired and headachy.

We got through two days of the show in Morgan Hill, but one of my key duties is balancing the books.  I always put off balancing the books until dinner after the end of any show.  Last night, my fried brain just could not make sense of what I was reading.  I could SEE the numbers.  I could double-check my work.  But, I could not see the errors, or do the necessary calculations to determine profit, fees, expenses and tally up who got paid what.  Or, who owes whom when tracking credit transitions vs. cash, fees, etc.

Scary.

My scary reality.  I’m used to pushing through challenges and bulling my way to solutions.  However, my body has betrayed me, and no amount of stubbornness works reliably any more.

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So, despite sleeping more than 12 hours last night, I took another 3-hour map this afternoon, and that’s helped to enable me to find the problems and balance the books.  I’m not done yet, and I won’t back down until it’s done, but I didn’t make my key deliverable to drop by my business partner’s and drop off the booth properties, as well as the money she’s owed.  Especially since I’m already a day late, being unable to handle this last night.

Sad.

But, my new reality.

One of the most frustrating issues I’m dealing with is trying to figure out how to survive and cope if I just don’t have the mental acuity to manage my affairs.  I think I’m on top of most everything, but when I get to the meltdown stage (as I was last night and again this afternoon), it’s not depression and it’s not laziness to take a nap.  In my case, it appears to be part of necessary survival.  Learning to accept that is one of my toughest challenges.

Everyone handles this disease differently, so this is not a situation where we will all have the same challenges and failings.  Trial and error for figuring out what might work for ourselves is key to keeping one’s sanity.  Because, as Tom says, ♫ ♪ ♫ Oh no, I won’t back down ♫ ♪ ♫

 

… But still I had fun

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The Mushroom Mardi Gras was more of the same in terms of opening my eyes to the challenges of dealing with COPD.

In my case, I got my business partner to slow down (she tries to help me, and that drives me crazy).  Her own worsening health with under-diagnosed COPD (she knows she’s got it, but refuses to go to the doctor or to deal with the underlying disease) makes her panic, and then she worries I’m not going to be able to keep up, so it becomes challenging to both of us when she insists on “helping” me.  Our favorite catch-phrase is, “don’t help me!” for both of us, so we can at least still laugh over it between ourselves.

But, by the time I had packed up the booth materials and gotten us to the restaurant last night, I couldn’t think straight to add up the numbers.

Ugh – I hate the brain fog that can accompany COPD !   Last night’s receipt madness:

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I could not add up our sales receipts to balance the books to save my life due to exhaustion, so that’s today’s homework.  Seeing if my brain fog is in a better state (plus using Excel) to get me to the final numbers.

  • Cash.
  • Credit.
  • Starting funds.
  • Expenses.
  • Number of Sales.
  • Who gets credit for what sale.
  • What processing charges for credit transactions come out of whose sales.

My brain just wasn’t up to coping last night.  And, I still had to be alert enough to drive home without an accident.  Luckily, having dinner helped beat back the tiredness (even if I couldn’t add to save my life), and I made it home safely.

Now that I’ve slept most of the day away, it’s time to sit down and do the numbers, and then think of going back to my partner’s (while listening to the last chapter of my audio book) and get the car unloaded.

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The one bonus about losing my ability to read for any length of time due to eye fatigue is that I’m learning so much more about the characters in the audio version than what I picked up when reading the hardcopy.

Wasn’t a fan of the narrator when the series first began (he made Bren Cameron sound lame brained and slow), but his more precise, asian style of speaking for each of the characters is really growing on me for illustrating verbally the Atevi style of culture and communication.  CJ Cherryh is always an interesting writer, and I learn so much about diplomacy and OCD thinking when reading or listening to this particular series.

It was the best of times…

… it was the worst of times, for everyone appeared to be on their last nerve this weekend.

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While I’m thrilled that my desired, eventual home in Morgan Hill is in a growing area, I’m not thrilled that “gentrification” has hit town with its related problems.  Yes, Morgan Hill is growing from a wonderfully small town farming community, to have more of the problems of the big city.

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I understand that change comes to everything with the passage of time, however, I’d prefer to be able to have fun at the annual event without seeing unhappy people around me.  Apparently, with all the gentrification, comes the problems of jerk children moving in from the big city to cause problems.

We had multiple incidents at the art and wine festival with teenagers stealing things, physical violence, and something as crazy as someone robbing the cash box of one of the city fund raiser booths (not sure if it was the Rotarians, the Knights of Columbus, or what have you), but it saddens my heart to see the surrounding problems from wrong-side-of-the-tracks / big-city-San-Jose coming to sleepy little Morgan Hill.

We no longer do events at South San Francisco’s Orange Park, as the crowd is too at risk (young mothers, traveling in tribes, stealing things.  The park is also across the street from some sort of gang headquarters house, so the baby daddy’s and their entourage of baby Mama’s hit the park about 3pm, and the problems increase exponentially from there as territory fights begin).

South San Francisco is a sleepy little area filled with wonderful people.  Many of its community members are highly religious, and there are churches on almost every corner and mountain peak.

But, head toward Orange Park, and one is in the heart of gang territory.

It’s that way with the Capitol Expressway / Blossom Hill area of San Jose.  Lots of it is wonderful, filled with hard working people trying to get ahead.  But, parts of it are filled with those who have fallen on hard times, mental health challenged homeless folks who have fallen through the cracks, and drug or alcohol lost souls.

While there are many mobile home parks in San Jose that would meet my criteria, the cost of the lot space rent is through the roof, even in a senior park, and they are mostly located across the street from family-style mobile home parks where under-supervised children abound as their parents try their best to get ahead.

Add in gentrification, and most mobile home parks have been removed from Silicon Valley.  The ones remaining charge astronomical space fees for rent, and the average price of the homes are $100k to $350K, which is a deal in a 50-mile circumference where the average home price is $750k to $1m

So, I get it that I’m between a rock and a hard place to find an affordable place to live as my COPD worsens and I’m not yet at the point where I’m in hospice or assisted living (and someone has to find a way to pay the bill because it’s beyond me).

My hope was going to be my own small place in Morgan Hill (and still is, if I can find the money to afford a home in a well-run senior park that I know well), but yesterday’s event really saddened me to see big city troubles coming to my little town.

Such a happy event, ruined by so few intent on causing mayhem everywhere they went.

Sad.

 

1970 – Vacation Adventures

Before my parents got divorced, my Mom and Dad worked hard to ensure that each of their kids were exposed to the wider world.

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I’m not sure the travel bug was rooted in my Father’s being left behind, once his Mother divorced his father, and spirited his younger brother away, or if it was rooted in my Mother’s freestyling of her own Father’s insistence on seeing and doing new things as he worked the mail car route between New York and Massachusetts.  Or, if it was a combination of both parent’s experiences, plus the 60’s flower power rhythm which exhorted young people to get out and see America, to experience life for themselves.

Whatever it was, we didn’t have much money, but we always traveled.  Every Summer.  Regardless of debts.  Regardless of how sick I’d been the prior Winter.

Once Spring and Summer came, it was like everything was conspiring to make me well (if it was a Summer without an operation), even if it was only for a short period of time.  I won’t tell you about all the holidays which became a challenging a two-hour race back home to MA from NH, as I fell sick and they didn’t want to hospitalize me away from home, but will rather add another happy memory – 1970 – when we drove from Massachusetts to Kentucky, and the highlights of my Summer “chore” experiences:

Massachusetts to Pennsylvania:

– First motel pool.  Swimming after dark following a long, air-conditionless day in the car.

– 5 people in a room with Big Bro and Dad in one bed, Mom and me in another bed, and Baby sis in her portacrib.

– and a chambermaid (my first real job in 1974) to clean our room and make our beds !

– learned about flax and spinning it into thread, plus how the thread became cloth (my Mom was big on ensuring we knew how people did things before modernization, to get us to thinking about where things come from, how one might make a living once grown, and keeping busy with hobbies and experiences on a regular basis.  Life was for the living and to be enjoyed).

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– seeing amish or pennsylvania dutch, and learning about people who still lived without technology – (gasp) “No TV?  By choice?!??”  (Mind boggling to my 9 year old brain).

Then seeing my Nana (my Father’s mother) with her new husband, “Jim, Dear”, while we visited them in Kentucky, and she tried her best to get along with the son she’d left behind oh so many years prior, after she divorced her first husband.

I learned old people can never sleep in, especially when married to a Military man, and that one got up at 5am daily to do calisthenics before the day was wasted.

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Who knew one exercised indoors vs. taking a walk around the neighborhood?  Apparently, only people with dogs walked their neighborhoods.  Walking was for poor people, or their household help.  (Yes, Nana and her eventual 7 husbands was quite an education at various points during my formative years).

While in Kentucky, I got to see my first horse (per Nana, so much more appropriate than milking cows in Canada the prior Summer), and visit Churchhill Downs, the home of the Kentucky Derby, and a bastion of the “best” of the beautiful people.

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Before we overstayed our welcome, we also traveled to New Mexico (Nana kept the baby with her for the day) and toured Carlsbad Caverns.

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Clearly, I come by my itchy feet and the travel bug honestly.  I may not remember the difference between stalagtites and stalagmites, for knowing which is which without looking it up, but I remember the words and the experiences of happy family times when so much was riding on making sure we kids got a solid grounding in understanding that the world was bigger than our back yard, and ours to enjoy if we dared to explore.

 

Vacation “experiences”

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Good day, if tiring, yesterday. Managed pretty well despite the COPD related tiredness.  I will soon be off to do part II of our art & wine show later today.

FYI, I use social media to wake up, to fill in a spare 5 minutes in my day, and to comfort me on my way to bed (reassurance or whatever that all’s right with my online world for another day).

Anyway, I tell you all that to ask you this: do you have vacation “chore” memories, where your parents took you places to expose you to different people and situations, or was that belief just something isolated to my parents?

The picture below sparked a memory, and summarizes one 1969 Summer vacation when my parents traveled from Massachusetts to Canada, ensuring we got to ride (and were now old enough to remember) our first car-on-a-ferry. Add-ins: a retractible bridge, miles and miles of endless freight trains when passing through Maine to get to Canada, and such, plus sharing the back seat in my Dad’s GTO Pontiac without killing each other. There we were, siblings; my 11 year old big brother on one corner with a window, 9 year old me in the other corner with a window, and 1 year old baby sister in her car seat kicking the two of us as we drove because we “dared” to be in her space, LOL. (The princess normally had the back seat all to herself, with her car seat placed up high on the back seat arm rest, so that she could enjoy the view from her royally-placed perch. With every kick from those hard as a rock white baby shoes, she was telling us how was really the boss to be reckoned with, LOL).

So mamy good memories, and life long experiences that served me well, when looked back through 45 years later.

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(oh, and the film link won’t work as it’s a still picture and not an actual link)

Another “Normalcy” Battle

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Despite having lost so much to this disease in my battle to pass for normal, I am refusing to give up on my therapeutic efforts as life spent sitting in a chair will lead to death sooner rather than later.

I have spent my life defying the odds, being yelled by Mom from across playgrounds and wooded fields (in the days before inhalers – pre-1979) to, “Slow down !”  And called by all three of my names (so I knew she meant business) to “Walk !  Don’t you dare run – you just got out of the hospital !” (or out of bed or off the couch) – wherever my exhile was for that particular round of the disease now updated to COPD status.

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All well-meaning cautionary efforts, both for my fragile lungs and the exhausted family budget, but which I ignored with the fervor of a bird escaping a gilded cage.

I wasn’t foolhardy by any means, but when every direction you turn provides more and more restrictions, who wouldn’t prefer to burn bright and fast than to be stuck simply sitting in a chair, waiting to fade away?

It is that dilemma I’m facing with this weekend’s show.  The lawyer’s advice has taken the place of my Mom’s screaming echoes from childhood memories, and I resent the restrictions being placed on my movements.  I can do anything if I take enough breaks and sneak in a nap or two.  I refuse to sit in the same chair every day, looking out the same window, talking to the same people.

I can be sick anywhere.  Chairs and beds exist all over the world.  Only time will tell if this latest stubbornness is foolhardy and self-damaging.  For now, I have to trust my own judgement and rest as much as I can to protect and conserve my limited energy, while also continuing to have fun and set goals that make life worth living.

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Everything that I’m able to create despite the challenges of my twanging right hand and wrist or flagging energy remind both me and the world at large that I will continue to try my best to remain active and busy despite the daily limitations of my over-taxed body.

Every poorly-executed design that I’m able to tear apart and try again to complete reminds me that I have nothing left but time on my hands, and that I won’t fade quietly away without trying to put some beauty into the world before I go.  Beauty created at my own slower pace, with limited timelines.

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… and which forbidden physical activities also remind me that I must remain active as best as I can, while I can, or risk being institutionalized sooner than I would like because I simply didn’t exercise enough or keep moving enough to keep atrophy at bay.

There is a mobile home on the market where I want to live, and I’m hoping to see it next week.  I’m not sure I have enough cash on hand to buy it, or if my restricted circumstances which prevent me from accessing my 401k while still in decision limbo make it foolish to pursue this unit, but I’m determined to try anyway.  I’m more rested.

Unlike last year’s effort to buy a mobile home in this particular Senior Park, I’m not under the gun to make a decision before going out on Disability, and I’m not working with the realtor who had her own agenda vs. listening to my stated limitations and desires.

Hopefully, if approved for a loan, I’ll do a better job pulling this home purchase together, presuming it’s the right one for me.

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Fighting all counter-productive restrictions, I will keep plugging along, remaining engaged in the world and trying to find contentment in each day.

Come what may, damn the torpedos, and full speed ahead.

Living vs Simply “Surviving”

Goals for rebuilding

I am so sick of ultimatums.  Guidelines for “my own good”.

Seriously.

Life does not have to be lived in extremes, nor in a constant state of compromise in order to have “quality” of life while battling a significant illness.  And I refuse to have my survival choices challenged because I’m determined to make the most of life while also preparing for the end-stage of my illness.

I watched my Mother, denied her social security benefits because she wasn’t sick “enough” and was too proud to go out on short term disability before being approved for long term disability, drag herself to the office in all weather, further harming herself while she, too, battled COPD.

I am also watching a cousin, who has had something like 23 surgeries on a leg after breaking an ankle, battling to continue to work and survive despite being fired while out on disability from her State job (you know, those jobs that are supposed to be impossible to be fired from).  Not only did the State of MA terminate her due to internal politics, one week after going out for another repair (vs. amputation of the leg), they also took her 20+ years of retirement benefits and precluded her from collecting social security because she worked for the State.  Oh, and one cannot challenge the State’s ruling without the State’s permission, so she’s lost everything and is forced to work part time (the best job and hours she can get) for the State of NH – now forced to stand on that leg for 8+ hours at a time, in an outdoor toll booth, in all weather.

The doc, a world renowned wound specialist at Boston’s Deaconess Hospital, has told her she MUST stop working.  She has to get off that leg or have it amputated.

The Social Security administration, however, admonished my cousin for not foreseeing her termination from a job she’d held many years, and told her that they could only give her $683 per month to live on.  Money that won’t keep a cat alive in the Massachusetts area.  Never mind pay for medicines, doctors appointments and the rest.

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So, it is with these worthy women occupying space in the back of my brain that I am seriously struggling with learning from my Mother’s experience (and my cousin’s present struggle), as well as trying to cooperate with my lawyer’s edicts as I figure out how to build my second life, knowing that everything I do is likely to be watched and scrutinized to determine if I’m sick “enough” or not.

Frankly, the latest series of letters has sent me through an emotional wringer.  Especially because I was told to shut down all social media accounts and stop blogging.

Mental health vs. Financial health.  That’s where I’m stuck right now.

I want to work.  I want to have a reason to get out of bed every day.  I understand the value of having an occupation and social reliance on my duties in exchange for the freedom money brings into my life.  My reality, however, is that my refurbished and much-mended body has betrayed me.  I tried keeping up by taking medicines that harmed my body while keeping me able to function short-term, and I accepted the increased risk of immediate death while taking those medications.

But, I also knew that if I kept on working until I was fired, I would not be able to get benefits.  Benefits I’d paid into through employment with many companies who used Aetna as their agency of record for dealing with the US version of how to avoid being a burden to society.  I wouldn’t be able to get benefits because I’m not yet 67 – the approved age for retirement currently in the USA.

I struggled for almost 2 years before asking the question, “Should I be on disability?” and having my doctor say to me, “I was waiting for you to ask.”

Clearly, there is a huge breakdown in determining who is and is not qualified for disability.  And, the heroic stories of AMAZING PHYSICAL FEATS that others, more visibly handicapped, have accomplished don’t help me in dealing with the mental challenges involved in ASKING for Disability (shame, failure, exhaustion – you name it) and awaiting the final decision.

Shame

The latest well-meant piece of advice (the ‘edict’) from the lawyer has raised a host of new issues the more I read his recommendations.  The “Activity Advisement” letter has scared the crap out of me – and I’m a seasoned professional, well-versed in lawyerly what-if’s and worst-case-scenarios.

In particular, I’m struggling with my compelling need to go check on my Aunt each quarter, and the edict which prevents traveling.  Basically, the upshot of the lawsuit, “Jenkins v. Price Waterhouse Long Term Disability Plan, LLP” says that if he was well enough to travel to London (my next bucket list item), even though he got sick while traveling and had to cancel the trip, then he was well enough to go back to full-time work.

In my case, I hope to be able to return to some sort of work once my disability has been documented and established.  I was clear to ask my employer for part time work or some sort of accommodation before being put on short term disability, and I stand by the fact that going on disability was my worst-case scenario and second choice.

There are too many cases of people who have ended up losing everything because they failed to recognize that they were sick and needed to stop working.  Instead, they kept pushing themselves until they were fired.  In America, being terminated for any reason means being cut off from the benefits they’d worked for and paid into.  My health is too precarious to willingly step into that abyss.

Financial-health-wordle-Edelman-300x225 mental health

The biggest challenge on this benefits determination issue is the ERISA benefit ruling that says, if one is unable to earn more than 80% of their prior income in their local work area, then they may be entitled to the benefits they paid into.

I am more than willing to consider going to a rehab specialist if I can get back to work in a supportive environment (vs. a highly competitive one) where any lapse on my part due to lack of oxygen / cognitive abilities for driving or performing my duties is taken into consideration when setting timelines and determining cause for termination.  I understand that it’s better to be working than not.

Everything in the case law that I’m reading, however, shows that insurance coverage has become yet another “scam” deal for workers in this country.  We pay into the benefits in the hope that we may never have to use them – and, if we have to use them, must not be able to leave our home for any reason other than doctor’s visits in order to be able to collect.

Live vs surviving

It’s this concept conflict that’s really confounding me right now.  I’m sitting here typing.  My breath whistling in my chest, and I’m trying to keep a positive mental outlook while also knowing that acceptance of my reality is critical to my mental health.  Pushing myself to the point where I have an exacerbation and end up in the hospital or emergency room isn’t in my plans as I want palliative care vs. life-extending care if they can’t fix what ails me.

While I may look like a faker to the rest of the world, I am doing the best I can to make reasonable, well-thought out decisions about how to have my best quality of life.  Traveling is part of that quality of life, and being handicapped should not be a reason for not traveling or for denying one their paid-into benefits.  I can be exhausted anywhere.  And, just like preparing for the endurance necessary to join a friend for bowling, or to travel to check up on my Aunt, I rest up, take breaks while traveling, and do the best I can to conserve energy while also setting goals for myself that let me remain involved in life.

Just call me flummoxed, however, as I sit here and try to follow the lawyers instructions to stop all use of social media as it can be used against me.

Blogging is also on the forbidden list of advisements for my own best interests… If I give up what amounts to a diary for dealing with this very difficult journey, I just don’t know what will happen to my mental health, already stretched thin as I deal with finances and other health-related worries.  My physical challenge says to me, “Do what you can, a little every day, as it’s good for the soul to be out and trying.”  However, I sit and wait and hope to get through this nightmare of a physical challenge / emotional challenge / realities of life in very expensive California.

Not done yet

And hope that I won’t mess up my situation further because I’m being stubborn in thinking that my continued mental health is important, too.