18 months in…

I originally wrote this post at the start of my journey on disability:  Da, da, dum, dum...

18+months later, I’m still struggling with the issues I originally raised for how to deal with the mental games the insurance company and society plays vs. being honest with yourself and your doctor in setting your expectations accordingly.

So, it is with perspective that I write to update my blog about then vs. now for energy levels and mental adjustments needed and revised.  I started this journey with a lung capacity of 31-32 percent, and I have devolved down to 26-27 percent, but I’m continuing to hold my own as my oxygen level seems to have stabilized at 96% on good days.

Originally, the insurance company took the position (after my employer’s company granted me benefits) that I was not ill and had not “earned” the benefits that I’d paid into during my 42 years of working life, and refused to pay out the benefits.   Thus started the 18 months worth of effort in disputing this refusal of benefits, eating into my personality despite the reality that my birth defect was getting worse as my Asthma devolved into COPD.

Imaginary Invalid

It’s been a huge series of changes and adjustments, with a great deal of fighting along the way.

I’ve had to scramble for money.  I’ve had to fight to find an affordable place to live (and, horrors, am now a homeowner with all those related financial disasters looming as the house needs maintenance and repair).  So, I could not be anything like the convalescent invalid that they seemed pre-disposed to demand from anyone claiming disability… I am your single, liberated woman disabled person, determined to make the most of my life independently for as long as I can manage things.  Naps are essential. Naps consume whole days.

But !  I refuse to let life pass me by while also accepting that things must change as I can no longer work each day and maintain any kind of work / life balance as most physical things, things requiring endurance, are beyond me to sustain.

Felix Edouard Vallotton - Laid Down Woman Sleeping (1)

Rather, I am an active invalid, sleeping any time, anywhere, as I fight to keep active and enjoy my life as much as possible for as long as I can remain active.  Sleeping in my car while doing errands (when sudden exhaustion or tiredness hits) is the new normal for me.

Being good about planning my day to keep a day of rest between activities is also essential.

Wanting to remain active, and not wanting to endanger anyone when I’m behind the wheel by driving tired, I’ve gained the ability to sleep any where, any time, and do it safely.  (Important:  Crack the windows for air on hot days, but don’t leave them open as you are very vulnerable when you sleep).

Gustave Leonard de Jonghe caught my version of disability best, in his picture of “After A Walk”:

Gustave Leonard de Jonghe - After a Walk (2)

So, as we continue this journey into disability, the insurance company and me, and I have finally won my benefits, I am continuing to challenge them about their notions of what are reasonable pre-conceptions regarding individual abilities while still being disabled, and what is out-and-out ridiculousness.

It’s getting easier to wrap my head around my need to be an activist for my reality.  Frustrating, but easier. I am more than a label, and I’m not dead yet.  Don’t restrict my movements in order to prevent me from remaining as healthy as I can while in reality I slowly decline.

 

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Painting credits:

(1) Felix Edouard Vollatton = Laid Down Woman Sleeping

(2) Gustave Leonard de Jonghe – After A Walk

Mail-aversion?

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There used to be a time when I was pro-mail. Couldn’t wait to see my name on an envelope. Couldn’t wait to open it all up and see what wonderful surprises awaited me.

Now? Not so much.

It’s not that I get bad news in the mail. It’s just that I’m able to leave it in piles all around the house and never actually get around to opening it up more than once or twice a month.

Not sure what gives with this new non-habit of mine.  (A non-habit is an aversion to doing anything in a timely manner. Not putting away the groceries.  Not opening the mail. Generally, pilling everything for review later, and making “later” much more onerous than it needs to be).

I met with the lawyer to put together my will, etc., and he sent me off with my marching orders. Did I do what I was supposed to be doing in a timely manner?  Nope.

Even though I signed up for the appointment and determined that getting my paperwork in order was a priority for me before doing anything else.

Every day I get out of bed and go do things that I’ll enjoy doing more that day than “adulting”.  “Adulting” includes the following necessary categories that have fallen by the wayside in my home:

– Cleaning

– Cooking

– Gardening

– Bill Paying / Mail opening

Don’t get me wrong – I cook every few weeks or so in order to avoid cooking daily. I am the queen of microwave re-heating.  I also enjoy gardening, and have a variety of plants in my yard waiting my attention to complete their interment in the Spring fresh ground. Ditto cleaning. There’s no dead bodies or spiders around, but clutter abounds.  And, I’ve already covered the monthly effort to pay bills (every 22-25th, I’m all over that necessity).

Otherwise, I’ve pretty much chucked “adulting” by the wayside and simply do what I want while my energy lasts. Going for a walk to get in my necessary steps each day.   Driving and taking pictures. Meeting with friends for dinner or a movie.  Napping.  Lots and lots of napping…  Listening to audio books or music. Building shelves and getting the shed organized.

My house looks like my long-conquered ADD / HD had taken over my life once again, with lots and lots of half-finished projects and activities.

Anybody else have problems “adulting”?  Inquiring minds would love to know.

 

Mentally Deficient – Not !

Or, not yet anyway…

Mentally Deficient

Part of the challenge of dealing with COPD is a lack of oxygen.  Lack of oxygen leads to exhaustion.  Lack of oxygen leads to gaps in thinking.  The only solution is plenty of rest, and planning ahead to avoid over-extending myself when the failure of my body to process oxygen as originally designed leaves me physically and mentally exhausted.

Oxygen deprivation / mental exhaustion is treated by rest.

Mental exhaustion driven by COPD is not a permanent condition, consistently predictable at every hour of the day.

It’s the good days / bad days juxtaposition that is causing the most agita within the insurance community.

Part of the challenge of dealing with my employer for the fight for survival benefits that I have paid into and worked to earn over this past 42 years is the fact that I don’t have 42 years worth of employers arbitrating my benefits earned over 42 years of payments, but rather I am dealing with the last employer to be holding the “hot potato” that is my earned benefit package.  The hardest challenge to fight has been the fact that the insurance company / my current employer have strongly implied that I am nothing more than a trained monkey, and need to be kept busy through the reward of hard work, and don’t deserve benefits because I am not “incapacitated”.  Or, not incapacitated ENOUGH.

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My employer’s insurance agency seems to feel that incapacity = not being able to enjoy life, drive a car, travel or otherwise leave my bed / couch / chair or house.

Apparently, being able to plan ahead to deal with physical and mental weakness = fakery.  Fraud.

So, it’s been very challenging to get dribs and drabs of paperwork describing what happens next after they agree that I am disabled / incapacitated.  So far, I have received 32 pages of paperwork describing how they calculated the $32k in benefits paid out to me.  I call this regurgitation of crap “disability math” or “new math”:

New Math

There’s lots more pages of paperwork they are sending over, too, but that pile of gobbledygook doesn’t have a single dollar attached to it, and contains nothing but page after page of threats about fraud, constant audits, and what disasters will befall me in the event that I am able to work and fail to report back to them that I am ready and able to hold down a job.

In particular, I find it ominous that it’s taken me 18+ months of fighting their denials to get the past-due benefits owed to me, and yet the paperwork received contains a threat of future denial of benefits and some sort of claw back due to fraud.  As if anyone in their right mind would WANT to give up a decent paying job and independence to be nagged to death and challenged about personal health choices at every turn:

Changing Scale for Defining Disability

I am not aware of anyone in this world reversing COPD and finding a cure.  (If they are out there, please speak up.  I want my life back).

I am not aware of any cure associated with avoiding disability-related depression by working at finding joy in life, or traveling, or driving a car (on my good days).  Such activities clearly have no way of becoming something that is able to cure COPD.  Apparently, though, my efforts to remain upbeat despite my challenges is causing my employer’s insurance company to believe otherwise.

Having dealt with denials of pre-existing conditions for my entire work life when it comes to paying out benefits that I’ve paid into, I am well versed in the lengths insurance companies will go to for profiteering over paying out its obligations.

But, having been put on Federal Disability – a pretty high standard and tough hurdle to cross – plus, having been a menace to others when trying to keep up a “normal” work schedule – I find it absolutely aggravating / depressing / maddening to continue to receive reams and reams of paperwork that talk about what disability means, and how it changes over time to not be as debilitating as originally thought.

Seriously???

If I didn’t have a mental health issue before starting this journey, I think I would reasonably acquire one over time after reading pages and pages of this crap.

All of this baggage, however, then brings up my final issue… the belief that I can think myself well.  The soul-destroying thought that something within me is driving me to self-sabotage by ruining my life via a “convenient” disease / birth defect.  That little voice in the back of your head which sows seeds of doubt and has your brain on a whirlwind of unproductive “shoulda / woulda / coulda” thoughts about how I’m at fault for not being well.  Not being good enough.

I’ve already been through this with my brother’s brain cancer, and I know he was a good enough person with no self-defeating thoughts to give himself brain cancer and thus end his life way too young.  But, I saw what the “happy thoughts” belief system did to bring him grief, and to make his efforts to live and stay in this world the hardest battle he ever fought.  Big Bro was an athlete, in superb physical condition.  If anyone could have found a cure through happy thoughts, prayer warriors and positive thinking, it would have been him.

Folks, I am not a Christian Scientist, and I don’t believe that the world revolves around any belief system contained between my two ears.  I have a birth defect which was / is a physical problem that fluctuates between good days and bad days, and which worsens over time.  This is a condition which has worsened despite multiple surgeries and related medications to keep me functional enough to pass for normal.

At what point will the insurance company accept that I’m as good as I’m going to get, am still declining a little bit more each day, month and year, and just leave me the breathing room to be thankful I’m not dead yet???

Would they rather pay out benefits to people who I killed because I thought I could believe in myself hard enough to deny the reality and repercussions for continuing to live in denial of my worsening health???  Three+ car accidents is enough of a real life example that it’s time to accept one’s limits when dealing with oxygen deprivation and exhaustion while trying to keep up and pass for normal.

No answers here, but this gives you an idea of the garbage that’s still in the back of my brain as I try and figure out how to keep as healthy and independent as I can DESPITE finally making some progress on this benefits issue with the powers-that-be.

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Hazard to myself

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This Winter has been hard, as I have a hard time asking for help.  I was raised to figure things out on my own, and to find a way to get things done despite any roadblocks.

One of my biggest challenges this Winter in dealing with my mortality is to find a way to heal the rift with my Baby Sis.

o-SANDRA-900

I don’t know that it’s possible, because I wouldn’t have changed anything I’ve done in life,  and I’m trying to respect the boundaries her anger is putting between us.

I lost the bid to fix my Baby Brother’s grave.  I gave it my best shot, having asked for professional help in 2013 and being assured that I had a sound argument.  However, that effort was merely sending good money after bad in terms of dealing with a crappy lawyer who did something different than what she was hired to do, and agreed to do, and who then backed off when it came time to go to court.  I have to live with that.  I also have to live with the fact that I chose not to leave it to my Baby Sis to handle, causing yet more hurt.

However, in fighting that battle as I promised our Mom, I seem to have crossed an unfixable bridge with my Baby Sis.  I’ve called and left a few voicemails, but it’s nothing but crickets.  I want to respect the boundaries she’s drawn, so I am backing off.  She has a right to tell me to get out of her life.  While I would think that I am out of her life being 3,000 miles away and given her previous complaints about abandonment, I guess I just wasn’t far enough gone.

Believe me, I “get” crazy.

Yayah

If anyone out there has seen, “The Ya-ya Sisterhood”, I know both my Sis and I are damaged from our childhoods dealing with a functionally alcoholic father, a depressed mother, and (my Sis’s words) a goody 2-shoes sister who was supposed to die at any breath of cold air.  So, I get it when it’s all just too much.

There is a scene in the movie where Sandra’s character is slamming the phone against the counter, demanding to know why she has to deal with her mother and the madness, and I understand that on some level that’s what I represent to my Baby Sis.

She’s never seen me as her biggest fan or advocate because I moved to CA and “abandoned” her (her words).  While I’ve tried hard to meet her half way in a manner that works for both of us, I’ve done nothing but hurt her because of our differing viewpoints.  My “no”s were too much for our relationship to survive, apparently:

– No, I could not be her Maid of Honor.  (I don’t believe in marriage, nor religion).

– No, I could not be her eldest son’s God parent.  (Again, I couldn’t promise to raise her son in the church).

– No, I could not shift my responsibility for Jimmy’s grave to her shoulders.  It wasn’t her burden.  It wasn’t her unfinished business.

Simple denials.

Straightforward.

But, continued cracks in the foundation of our relationship as we always seem to be at cross purposes.

So, while I would like to involve her in my life’s final arrangements, I cannot do so because of many factors – one of which being that she fights the reality of death being a part of life.  Plus the fact that this is a long distance relationship and the related hassles of managing those affairs.  And, finally, because the responsibility needs to go to the next generation – her eldest son – as he promised long ago to help me, and it will be easier on everyone if she doesn’t handle my final wishes.  She already has enough on her plate.

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So, not having received any acknowledgement about #2 nephew’s pending nuptials, and getting nothing but silence from my fellow POW from our family’s private little battle, I’ve moved on to make everything as clean as possible for final details so that I’m not leaving a mess for anyone else to clean up.

The Roomie will be listed as my #1 Executor, and she will be given a copy of all the paperwork.  There will be a certificate of deposit created with the Roomie as the beneficiary, and she’ll be able to get her hands on the 3+ months of forecasted necessary funds to handle my affairs the minute she produces a death certificate.

I’ve paid for all of the foreseeable arrangements in advance, and the will is being drawn up with the healthcare directive and power of attorney set to allow the Roomie to handle everything unless she chooses not to do so.

Thereafter, if the roomie refuses to handle everything, or dies before me (not likely), things will devolve to my eldest nephew as my Executor.

I know it will break my Baby Sis’s heart to not be in charge, and cause yet another rift between us, but the reality is that she can’t handle it and I’m trying to be kind and not burden her with that level of work.  Especially when she’s not talking to me.

And, I’m trying to protect my eldest nephew by making him alternate Executor # 2 so that he doesn’t have to fight with his Mom, should I pass away as expected while everyone else is still around and able to handle these details.

I can’t see any other way out of all of this, so I’ve cast my decisions to the wind to let the hurts fall where they may in the hope that there will be little collateral damage.

My sop to my Sis’s emotions is to make her #3 as Executor on the paperwork, able to take over only if the Roomie and the Nephew refuse to fulfill the role.  That’s the best I can do, and I’ll live with the consequences of continuing to work at what seems to be cross purposes.  It’s the best I can do to find a compromise for reality for us both.

A Rose is a Rose is a Rose

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” Don’t eat that! ” is my pet peeve.

I’ve been dealing with the drama of finding a new endocrinologist to help with my diabetes status, while also feeling that “all full up at the inn” for any other opinions about how I should be living my life.

I have a wonderful former roomie who means well, but her new-agey viewpoint is getting on my last nerve.

She’s decided that all my problems relate to “inflammation”, and that changing my diet will fix all my problems.

I get that she’s coming at me with love, but until she gets her medical degree, I need her to leave this topic alone.

Yes, “inflammation” is part of my problem, however, part of that inflammation is caused by fruits and vegetables – all things that I cannot eat (and certainly not in “raw” form) – and I need her to pick another topic as her anxiety about my disease is not a burden I can take on.  Not now, not ever.  Death is a part of life, yes, but I’m not dead yet.  Please don’t bury me prematurely.  Please don’t discount my 56 years of experience in living and dealing with this disease.  Please just back the f**k off !  Oh, and love you.  Mean it.

Fraud Implications

good-enough-quote

The biggest challenge I’ve dealt with this Winter is the constant implied, “you’re a cheater”, “call this number to report fraud”, etc., etc., etc.

In this land of Capitalism, we seem to forget that Capitalization doesn’t do us any good without perspective.  Our without compassion.

I have been in the process of losing a friend of 42+ years due to the tightness of the leash I’ve had on my opinions (really!  for those of you who talk with me on FB – trust me – I’m being VERY diplomatic to keep all my lines of opinion-spouting separate).

As we have aged, I’ve pretty much kept the same line of logic that I’ve always had, except that I’m faster to stand up for others, and to fight for zero restrictions on others’ actions.

This other person, once a very dear friend, has gotten on my last nerve with her insistence that she already “gave at the office” (my words), and that there is no room for improvement in the world.  It’s her way or the highway for philosophical matters, and I’m just at a loss for how to keep the relationship alive in a healthy manner.

I am also dealing with the fact that she has a husband and children, and feels free to relocate in the world as part of her life plan, despite her age, and has no understanding that I already moved and found my home, and won’t be moving any time soon.

If she’s not chiding me for my unmarried state, she’s unhappy with my opinions of euthanasia and abortion, and also seems to feel that I’m goldbricking my disease because I try and walk a few times a week, swim or bowl when funds permit, and also check in to facebook to blog or game with other friends.

I think the logic goes, “If you’re well enough to do all that, you need to get back to work… like the rest of us WORTHWHILE, CONTRIBUTING MEMBERS OF SOCIETY people”.

Yes, I’m adding the coloring to the attitude I’m getting, but when you couple it with fighting with the insurance company, it starts to get old.  Really old.  Then, add in being unable to afford one’s meds.  (Hey, I’d like to hurry up and die – please don’t kill me sooner from lack of medication, ok?  But especially when you make legal euthanasia so hard to achieve).  Add in the fact that I’m struggling with a home that I never wanted to own (but am trying to enjoy in order to afford the rest of my life), you may be able to understand that I’ve been a mental mess that largely resolves around the “Am I good enough just as I am?” question of life.

Darn it !  I know I’m good enough.  It’s just that sometimes the fight gets too much, and I just need a break.

Meanwhile, in the middle of my midlife crisis, my business partner injured her leg and I was trying to be a good and supportive friend for helping her out without taking on her anxiety or bringing her down with my issues.

Can’t say I have it all under control, but life has been pretty busy and things are getting better.  Yes, I am good enough just as I am.

Attitude Adjustment Found

Rather than sitting around screaming at people over the last few weeks,

Back the F off

I just kept away from WordPress and blogging while I cleaned up the garbage between my ears.  Things are better now, but only because:

– I got profit sharing

– I got a preliminary judgement that the Insurance Company will pay me + cash **

– I got my will done

– I am in the process of paying for my final wishes

– I had to move my UK trip to 2018, which really sucked even though it was a good idea

– I repaid my 401K loan taken out when my benefits were approved but not paid

– I just booked both a Yosemite fishing vacation, as well as a Christmas cruise

– I was able to book a trip to go see my Las Vegas Auntie for her May birthday.

Yes, I’m just *that* shallow.  Money in my pocket provides an instant attitude adjustment.  As the song says, ♫♪ Money !  Money changes everything….  Yeah, Money !  Money changes everything… ♫♪

I’ve been spending the last few weeks looking at my hoarder’s paradise of a house, with everything partially completed, and frustrating myself within an inch of my life.  But, things are better now, so I feel like I have stuff to say that may be worth reading.  That’s probably my ego talking, but even if it only cleans up the left over crap between my ears, I do find that blogging is very helpful.

So, for anyone that got this far – thanks for your patience.

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** = the money is still in debate, as it’s nowhere near what was anticipated given the numbers provided by my company on the paystubs, and as I haven’t yet received the bill from my lawyer.  But, it’s a start to some sort of peace of mind.