It was awesome not to think…

Frank Somerville

Frank Somerville is a newscaster on a local channel, who has taken to facebook and social media with a real talent for telling human stories.  You know, what “People” was originally intended to chronicle, but which has now become a single-story side note vs. its main raison d’etre of all celebrities, all the time…

Today’s Frank Somerville story grabbed my attention (because my view of the world is all about my battle with COPD, my battle with my employer for my benefits or my battle with the useless landlord – me, me, me!) when the Mom in the story wrote, “it was awesome to not think about cancer for the day and enjoy each other“.

In my case, I’m really frustrated with trying to fortify my life with an affordable living situation despite the impact that COPD is having on my life.

Today, I actually opened the mail.

Yes, I am bad and only open the mail about once or twice a month, if that.

But, the financing of this fight means that I have money, a limited amount of money, and am fearful of running out of funds or exceeding my ability to care for myself as my health worsens. There is not a moment of any day that I am not thinking about how to survive this battle, as well as still enjoy life.

So, the insurance company’s failure to pay my matching salary benefits (approximately $6k per month) is particularly troublesome.  If I had that money, I’d be ASSURED that I could buy a really decent mobile home and make the monthly payments.  If I had that money, I’d be ASSURED that I could afford my treatments and still eat.  And put gas in the car.  Maybe buy a book or two.  Have the experimental stem cell treatment.  Travel.  And on and on and on.

Everything in my life circles around this disease and its impact on my life as I’ve had to stop working.

– Can I exercise  (i.e., how’s my shortness of breath today – do I feel capable)?

– Can I play mini golf (is it too sunny / hot, too breezy / cold)?

– Can I go and check out a mobile home and not get sick?  (Depends on the conditions)

– If I go bowling once a week to try and stay moving and healthy, will that be used against me by the insurance company, should they ever be compelled to pay me my past-due benefits?

Don't look sick

There is not a day that goes by – both before leaving work and after being on disability – that I don’t think about this disease and its impact on my quality of life.

There is not a day that goes by that I don’t try and pass for normal, all the while trying to figure out how to maintain my quality of life and not let it slip away through laziness, poor choices, or simple tiredness from the battle.

However, due to the latest strictures from the lawyer, it’s making me feel like a faker when I’m anything but faking.  I worry about cameras everywhere, taping my every move, trying to provide evidence that I’m not as sick as my COPD says I am… all because I refuse to sit still and I continue to try and maintain some normalcy in my life.

Truly, I miss the “old” me – the one who didn’t have to worry about affording this next stage of life in dealing with a chronic illness.  The one who hoped for a simple heart attack to end it all, or that I just wouldn’t wake up one day.  Those options didn’t happen, so now I’m in the fight of my life because I continue to live

I miss the before me

I want to be able to make plans and keep them.  I want to be able to look forward to going to England and seeing Stonehenge. Maybe adding in a day trip to Ireland or Scotland.  Instead, I am sitting her OCD’ing over all the restrictions from the lawyer and trying to change the rules of the game so that I can get what I paid into and enjoy life while it comes closer to its end.

Believe me – I *know* I’m not 67 years old and not able to retire, legally, without a fight or facing starvation for quitting early.  55 is way too young to be HAPPY to be moving into a senior park.  55 is way too young to be looking at 80 year and thinking, “Yes!  I’ve found my peers.”

The biggest challenge with this latest episode of dealing with my version of COPD from my birth defects is finding happiness despite the challenges.  With letting go and trusting that things will work out – despite my track record with that concept, LOL.

So, I’ll close this whiny post with the reminder that my greatest goal in life is to forget that I have this disease.  To distract myself with anything that I *can* do vs. focusing on what I cannot do.  Any other choice would simply drive me insane, as it appears to be trying to do when dealing with the lawyers…

Happiness Secret

 

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s