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Monday, March 23, 2015

A Gaping Hole

There are many gaping holes in the US Medical infrastructure and this one is no exception.  It’s actually a hole within a hole.  I  want to make it clear this is by no means a negative attitude about my condition.  It's an observation about what is missing for those of us without the same option as those who are dying.

Firstly, only a few states have right to die laws, mine included.  So the fact that most states don’t recognize or give those who are dying the dignity of choosing to let go on their own terms is the first hole.  And within that, lies the secondary issue.  I call it the “No By When Date” or “I am in the don’t qualify hole because I can still buy green bananas”.

One must have been given a diagnosis of six months to live (or less) to qualify, verified by at least three physicians.  I can understand there must be guidelines so that someone just having a bad day can’t access the drugs needed to get the job done.  The line must be drawn, I get that.  However, there are hundreds of thousands of people (including me) who do NOT have a terminal illness but rather a horrifically painful chronic, untreatable  condition that no drugs can quell, no acupuncture can lessen, no meditation or music that takes one out of their bodies and away for more than five minutes and no other distractions that work.   All of the above did actually work for me for hours, sometimes a few days at a time.  Not anymore.

The doctor keeps claiming there is no change  (though no MRI for a year) but here’s the thing.  When tumors sit on the sheath of the nerve for years and years (my whole life, but worse the last 15 years) they wear down the sheath and end up directly on the nerve.  No tumor growth is a good thing for other reasons but makes no difference in terms of less pain.  The tumors scar, which also rubs on the nerve.  So the pain is non-stop and the doctors sometimes haven’t a clue.

So I live in agony and my only options are to just try and deal with it or take my life without the permission or help from Death with Dignity.  I would in a heartbeat some days but I let fear stop me.  Fear that I’ll get it wrong and leave my family in a worse state than they are already in with me as member.  If I get to that point, I could look it up on the Internet, but would have to send someone out to get what I need since I don’t drive anymore.  Not likely to find anyone willing.  I am blessed in many ways, I know that.  But neurological pain is beyond description and for me, it never ends unless I manage to sleep.  

I was just in the hospital for two weeks (two separate stays) since February, trying to get my pain under control.  My family was ready to send me to a care home but I managed to convince them that with a little more help from the state, I’d be fine.  I got that help, plus my family found a fresh food delivery place that comes once a week.  I order online, they deliver.  Eating is a major challenge for me so prepared healthy meals are welcomed.  But I’m thin as a rail and ready to rock out of here.   I feel like a tree with its leaves all gone; I literally never leave the house unless it’s for a doctor appointment.  I used to go shopping with my help.  Everything is a challenge and the only way I can contain the pain is to move as little as possible.

I still welcome a good book, movie, music and laugher with friends and I get all that all the time.  I’m just painfully tired.  Pun intended.

And yes, I KNOW that there are plenty of people who are worse off than I am.  In fact, I am aware that compared to most of the planet, I am beyond blessed.  A roof, family, friends, access to medical care and food (if I want it).  So I get it.  But when the pain is beyond what I can handle, when like the pain sheath, I am worn to the bone, when I feel it is time for me to bid farewell, I should have that option.  Just like the people with the “By When” date stamped on their heads.   When you live in agony for 15 years,  when your body is addicted to opiates that you would like to toss out, when you have lost   about a quarter of your body weight and when you are through struggling you will know when it’s time.

I read about the woman in Oregon who was diagnosed with a brain tumor and made that choice.  It was all over the Internet.  There were the people who haven’t a clue who called her a coward, and people like me, who were jealous but happy for her.  She was anything but a coward.  It takes guts to make that choice.  She said she was afraid of the upcoming pain.  She had reason to be.


Let’s work on getting this changed, shall we??


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