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

2 thoughts on “18 months in…

  1. Tonight I heard of the death of an acquaintance that I met when I first moved up here. He was maybe in his late 60s and they gave him the diagnosis about a week ago is all. I saw him in church last month and he looked the same to me, he was a very fat man who struggled to walk because his obesity rendered his hips and knees as ruined and they wouldn’t fix them until he was much thinner. Turns out THAT was all moot. I know he struggled for the past 24+ months to diet in order to have the surgeries. He exercised (a thing he clearly loathed). He felt guilt and shame (I knew his wife better than he, but I exercised at the same time as him in a local pool) for sneaking stuff off his diet. And all the time (apparently) the liver cancer that killed him was getting worse and worse. What a (pardon the French) fucking waste. Of time and of quality of life.

    So I read your posts and am encouraged that someone IS insisting on living a quality of life they choose. Despite all the whining and restrictions modern society is trying to impose. I mean it’s OUR life, isn’t it? Not the doctors, or the insurance companies or the governments, it’s OURS. And to me? We DESERVE to enjoy it as much as possible. The groups listed (except the doctors) are doing their damn level best to kill all the baby boomers (it seems anyway) and some of the doctors have apparently signed on. So if you CAN, you go right ahead and LIVE.

    I think a person knows when their time comes near. I hope my acquaintance had his affairs in order because now his wife has two girls to raise – one of them under 10 (a second family – this couple adopted special needs kids in their later years). She has to deal with grief. Me? I’m jealous as hell of the man. I want to go like he did – quick. No overthinking, no angst and bullshit. We all deserve the same.


  2. I am very sorry to hear of the loss of your friend, and couldn’t agree more that his last months were a mix of abuse and harassing torture for trying to tell this guy that he must first accomplish weight loss before he could lose weight. An oxymoron if I’ve ever heard of one.

    And, to overlook liver cancer (in my opinion) because they were so focused on his weight that they wouldn’t look at anything else? Crazy !

    One of my cousins has recently lost over 300 lbs and is trying his best to fight his depression and obesity by doing iron man races. He’s draped in loose skin from the weight loss progress he’s made, and now needs surgery to trim away the excess of his original body. He’s been very brave to go the “Go Fund Me” route, and I couldn’t be prouder for him achieving his goals.

    As of right now, I’ve booked a trip to see Auntie in Las Vegas (May), a flight to a friend’s daughter’s graduation in June, and weekend at Yosemite fishing while keeping a friend company while she house shops (later in June) and a Cruise for Christmas with that same house shopping friend.

    Crap happens every day, and we must find a way to succeed despite the nay-sayers or we’ll just drive ourselves crazy.

    As for me, I’m in the middle of the final paperwork for Will, Healthcare directive, Hospice, The Death with Dignity act, etc., etc., etc., and the one thing that no one is able to answer for me is “Why don’t money issues” qualify someone for the Death with Dignity Act?”

    Yes, there comes a point when we exceed our financial assets. While I do not condone anyone being forced to self-terminate, I do think that people will end their pain messily and on their own if they are sure there are no better options for themselves in the world. Personally, I’d rather have it supervised to make sure it’s peaceful and successful, and I’d like to check out when the financial worries get too much.

    This whole idea that we MUST continuing working to the point of death is a whole other insanity. Add in the fact that we aren’t, apparently, good enough as we are, so that we are tortured by either our own insecurities or by Society’s piling on for discrimination and poor treatment is just madness.

    Sometimes, the anticipated longevity that we are all getting (compared to this time in 1817 or 1917) is not all it’s cracked up to be. Not all bodies are created equal, and for those of us struggling with self-identity, there should be a way to humanely resolve the problem without jail being involved.

    Hugs to you. I am so sorry that you’re having to continue fighting for your point of view to be heard and respected, even if we don’t all agree with what are reasonable choices for quality of life.


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