Return-to-work Survey.

Seriously.

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I know that my employer and its insurance agent considered me a faker, a la the picture of the former police officer, above.  Today, I learned that I’ve been miraculously cured, as they think I have reported back to work.

 

After spending the day running around trying to complete forms for Social Security Disability Insurance agents, I got the most bizzare phone call from the former employer’s Insurance Program Administrator asking me a few questions, “…now that I’ve returned to work.”

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Seriously ? ! ? ? ! ! ! !

They terminated me in early May.

I’ve been paying for COBRA insurance for the past month or so (and was just denied insurance coverage today, when I went to re-order my medicines).

So, to not mess up the timing of my medications, I’ve had to go back to paying for my own flu shot out of pocket (a la the pre-Obamacare days).  Now, I also have to actually go through all the mail or make the dreaded phone calls to learn where my new insurance card may be.  If such a card exists.

For a company that has done nothing but deny my benefits, harass me within an inch of my life, and then congratulate me on returning to work as part of it’s “quality” survey, should I be surprised that my insurance appears to have been cancelled?

Today’s quality survey questions were along the lines of:

  1.  Regarding your recent claim, on a scale of 1 to 5, with 1 being poorly and 5 being excellently, how do you feel we handled your recent claim?
    1. Answer:  1 – poorly
  2. Regarding your return to work, we have just a few questions to you about how well our services worked for you.  On a scale of 1 to 5, how helpful were we in getting you back to work?
    1. Answer:  N/A – I didn’t go back to work
  3. Regarding your disability, how well did our service claims administrators work to aid you in recovering your health and returning to work?
    1. Answer:  N/A – I didn’t go back to work
  4. How likely are you to recommend our services to others?  1 is unlikely, 5 is highly likely.
    1. Answer:  1 – highly unlikely.  

I could go on, but the nightmare scenario continues and won’t improve through repetition.

I acknowledge that I have been terminated from my job as a way to try and wiggle out of their disability insurance obligations to me.

Social Security Disability is now also challenging the supplemental benefits I finally received after 18 months of fighting to obtain what I was promised as part of my employment package.

And, the employer’s insurance carrier started its challenge of my continuing to receive supplemental wage benefits 9 months early (the time for challenging my ability to work wasn’t supposed to start until March 2018, at the earliest).

I’m doing fine, but my attitude could be better.  This whole issue of miracle cures for me and some phantom job are just the frosting on my cake of a 2-year anniversary for accepting my disability, leaving work in order to improve my quality of life, and being on disability benefits while hoping it will be enough to give me some actual quality of life vs. simply being a game of endurance.

So, did I ever tell you how much I hate the Fall?  Things turning brown and dying / atrophying everywhere.  Wet, fog, gloom.  Early sunsets, late sunrises.  I hate the shorter days between now and February.

October is becoming a whole other reason to want to hibernate through the Winter.

Unless, of course, that miracle cure arises.  “It’s a miracle.  I’ve been healed!”

healing-of-the-blind-man-cropped

 

 

 

 

Twilight

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This is another blog that I’ve sat on for awhile, as I’ve been a busybody throughout the Summer, and it came to a head in early September.  So, now I’m ready to purge it and move on.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Yesterday was a rough day, but I very much enjoyed the snippets of farming life I could see from the road as I drove home.

It was particularly uplifting to notice what appeared to be a wedding or a Saturday Night yard party coming together in the fading of the light.  I couldn’t find a picture which perfectly captured the mood I felt as I drove by, watching a duded up young man, in his best jeans and silver-buttoned vest, heading into the party.  He captured my eye as he walked down the white fenced lane between paddocks, heading for the music and the welcoming lights, with the beautifully placed white linen tables under a white party tent festooned with hanging lights.  It was in my view for just a moment, but the hopefulness and glory of the captured image lightened my heart.  It truly does take a village, and I was seeing that unfold in a more hopeful manner for me as I drove off into the twilight at the end of a long, tiring day.  Why was I so tired?

Because I’d spent the day being a busybody.

A friend of a friend reached out to me earlier in the week with a message that typically goes like this, “J, have you heard from C**** lately?”

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Having dealt with some back and forth, and having called Adult Protective Services because this mutual friend is again behind on her rent and apparently unable to maintain a stable living environment, I did what I thought was best, possibly going over the line into busybody-hood, and laid out the particulars:

– The 7 years of continual decline

– The move to the boonies to survive financially

– The failure to make a financial deal and keep it up

– The emergency room visits from falls

– The complaints for lack of care / mental health resources

– The possibility of being kicked out due to late payments of rent

– The bug problem infesting the filth in her apartment

– The utilities being cut off

– The inability to follow through and get help

Mental health challenges truly are a community concern, as well as a privacy issue.  Balancing those concerns for managing individual rights vs. helping someone see they are a danger to themselves and a risk for falling into homelessness adds an extra level of stress.

So, I called Adult Protective Services on Friday, and paid a surprise visit on Saturday.  With a 2-1/2 hour drive each way, it’s a very long day.

My doc started me on Metformin (and I don’t know if that’s making me tireder or is just part of my own disease progression), but I got through the visit by eating and drinking constantly as I tried to both be supportive without being an enabler.

Clearly, I frustrated the heck out of my friend, as she kept looking for someone to be angry with, and I kept bringing her back to me – the busybody in front of her – versus who had “betrayed” her situation to me.

I left her with the promise to drive her around if she wished to come down to her old neighborhood to visit her friends (she would be using train tickets previously paid for by her brother-in-law but never used, I believe).

I also told her that I’d be back at the end of October if I hadn’t heard from her by Halloween.

Flash forward to the middle of September (at least 2 weeks since I’d been to see her).  The phone was again disconnected, and I’d heard that her brother-in-law had passed away.  Knowing that she may not know what was happening, and that there was no way to reach her without her cooperation, I left her a simple note on facebook (that tool of troublemakers everywhere, haha) that I was sorry to hear of her brother-in-law’s passing, offered my condolences to her and the larger family, and offered my services if she needed transportation.

What I got back was a message that I was to leave her and her family alone and butt out of her life.

AdultProtectiveServices

Was I trying to provoke her in order to make my handling of her problem go away?  No.

Was I trying to make her crazier?  No.

Unfortunately, because I know boundaries, I have alerted the authorities that there is an elder in need of care services, and I must now let the wheels of aid grind along in the hope that they will find a way to help her, while also butting out myself until (if) she ever opens the door to me again.

I’ve done what I could before walking away because I truly do feel that Adult Protection *is* a community responsibility.

However, it doesn’t make me feel any better about abandoning a friend because she needs more help that I can give her, and she won’t accept help from the social services teams empowered (and funded) to provide such assistance.

This is now the second friend with mental health issues that is out of my life.

While I am sad, and struggling with the loss of friendship, I also can’t see where I could have done anything differently.  Until you contact the powers-that-be to see what can or should be done, non-expert friends and family are working blindly and doing what they can to prop a friend up without being swallowed whole themselves.

So, my village got a bit smaller, and I’ve been in mourning that I didn’t know what else to do.  I’m doing better, which is why I’m finally able to publish this blog, but I’m still uncertain about what more could have been done to avoid losing the 20+ years of friendship I’ve enjoyed with this woman.

 

 

Traveling with COPD

Or, pretty much anything with COPD – when there is another person involved.

COPD Messed with the wrong woman

I’m a pretty relaxed person, but I’m also very competitive.  Not overtly, but in general.  I measure what everyone else is doing, and decide if it’s important to me.  Or, the back of my brain is doing the measuring, and I’m in competition without consciously realizing its effect.

During this last trip, we went to Yosemite.

There was some concern about who had the most space in their car (my friend drives a VW Bug), and while I was happy switching to my car, I was concerned that I might get too tired to drive during the trip and wanted to be sure she remembered / knew how to drive a standard (manual shift).

All good.  We both know how to drive a standard, so off we went.

In order to be able to keep up, though, some dietary sacrifices had to be made to keep my energy up (screw the diabetes !).

There were some significant times when I felt edgy for being behind the wheel and driving tired, but since there was somebody in the passenger seat, I was in “competitive” mode which helped me to keep on going.  That and the extra sugar.

My naturally competitive nature is one that keeps me going despite being tired or in pain.  (FYI, pain is a normal part of my life, and it’s getting more noticeable as life goes on.   I have seen the mental health damage that opioids can do within my family, so I pretty much work my aches and pains off vs. taking anything regularly for it as I don’t want to rot my brain or run the risk of being addicted).

So, we’re out and about and I’m sleeping in unfamiliar surroundings, in a normal bed, and my sleeping is the sleep of the exhausted.  But, once I’m up, I’m up.  No ifs and or buts.  I have to unkink my back, or find a way to get out of bed without triggering liver pain.  Basic, predictable stuff.

Instead of leaving me be, though, I get all this solicitous, “Do you need a nap?”  or “Wow, anybody who knew you were sick wouldn’t believe you were ill.”  Passive aggressive crap that gets on my last nerve.

Good friends and kind-hearted people may not mean it aggressively, but I find it very challenging because *I* am not comfortable with my varying levels of abilities from day to day, and because *I* am worried that I will lose my benefits because I’m not suffering “enough”.

“Enough”.  Someone needs to suffer at an appropriate level to be “enough”.

Do you hear that crap that’s in the back of my brain?

Being ill goes against the grain which illustrated everything that America is supposed to be about.  One of our family comments includes, “Suck it up”.  Seriously.  I think about a conversation with my brother when we were selling our Mom’s condo, and our sister was running late to help clear the property of my stuff on the last day of packing up to return to CA.  I explained that all the change was hard for her, and that this was a close of a hard chapter in all our lives.  Our big brother, Golden Boy, blew a raspberry and reminded me that she needed to suck it up.  I laughed then and I laugh every time I remember it.

When that same big brother was going through brain cancer, he was in a lot of pain and fighting the side effects of the treatments.  How did he fight?  By showing up and participating.  By finding something to enjoy every day, regardless of his struggles.  By getting out and running 5 to 10 mile a day.  Think about that – he was dealing with brain cancer as his life slowly edged away, and he was running to try and work off his attitude problem and real pain so that he could participate in life and not pick on his family or friends.

Being a decent person is like exercising.  It’s a choice every day.  The same thing goes for being an active person, and choosing to participate in life vs. sitting on the side lines.  Some days you stay on the couch, and sometimes you suck it up and you get up and you work through whatever issues you may be having.

Sometimes the illness wins.

Sometimes you win.

Traveling is just like that issue and choice, too.  I can be sick anywhere.  I choose to travel despite being sick because I’m not dead yet, and I want new experiences and memories to help me get through those days when I can’t get out of my own way.

Does it mean I should be driving?  Not necessarily.

Does it mean I make the best choices when pushing myself?  Not necessarily.

But, I suck it up and I try because I’m not dead.  Not yet, and hopefully not any time soon.

So, when I’m traveling with you, please don’t hover and please don’t challenge the “visibility” of my illness.  Like all wild animals, I hide what’s going on as it’s a survival mechanism.  My battery may be on red, but I’m going to go and go and try until it’s drained dry and I’m forced to sit.

That’s just who I am.

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.

 

***********

Painting credits:

(1) Felix Edouard Vollatton = Laid Down Woman Sleeping

(2) Gustave Leonard de Jonghe – After A Walk

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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Fraud Implications

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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.