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??

Posthumous Happy Birthday

Hey dad, March 20^th  (tomorrow)  would have been your 91^st birthday but you passed just seven months shy of that mark.  I still miss you every day.  I know we were not close when I was a kid, but thankfully we mended things while I was still in my twenties so now, just past sixty, I can be grateful for sewing on those patches which allowed us to have all the fun, fights and love that go into a healthy father/daughter relationship.  I’m posting this today so I don’t forget, something that has been happening a lot lately.

The end wasn’t easy for you in terms of your heath, and sadly, you felt much of the physical pain that I am familiar with though for a different reason.  You often blamed yourself for my genetic disorder though no one in our family had it prior to me so no blame was necessary and never would have been at any rate.   A posthumous happy birthday to you dear dad, in whatever realm to which your spirit has carried you.  Knowing you are now pain free is enough for me to be grateful and I will be eating copious amounts of chocolate to celebrate the occasion.  Hope you get something sweet though that date probably means nothing to your soul.  But what do I know.  If there is chocolate, eat some for me.  70% or higher, please!!

I have been in and out of the hospital of late but am doing better now.  Jeff and Tami have been a great help to me physically and emotionally.  And because of your generosity, I have a food service that delivers meals once a week.  They are healthy and yummy and I am gaining back some of the weight I lost after some surgery in January.  I gained it for the surgery knowing I’d lose it so now I’m getting back to where I was.   I’m going to sell my car and that’s hard but hey, I haven’t driven for eight or nine months at least.  I was fooling myself thinking I could drive again.  I was actually hoping to have the surgery before you passed, thinking I might be able to drive again afterward. But I recently had a dream where I was driving, wondering what I was doing behind the wheel.  So I guess it’s the timing was right.  I also have more help coming in.

Accepting my situation has been a challenge.  When I surrender, I’m relatively okay.  But the “woulda, shoulda, coulda” song keeps running through my brain and I have to stop it before my anxiety goes berserk.   I just try and watch my hummingbirds, the eagles on the web cam, and movies.  I read, write and visit with friends.  And I think of you, mom, Ida, Ruth, Esther, Rose, Bunny and all the other strong women/men who were in my life on Earth and continue to be in my life…wherever you/they are.  I feel you all and when I close my eyes, I see.  I don’t want to take you away from what you are doing now; just know I feel you with me.   All. The. Time.

Coping Skills

I am trying to track when the crap hit the fan for me anxiety-wise.  I’ve always had it when the pain got bad, but now it’s an island on to itself.  I believe it was two weeks after my surgery, when I had that incident of not being able to make it to the bathroom in the middle of the night and having to call 911.  The “crime scene” incident.  Also, I had told myself that if the surgery didn't work, I'd end my life.  A lot of pressure to put on myself.  Yes, I can change my mind....but still.  I mean, my eagles will be hatching at the end of the month, can't miss that, right?  LOL

  I’ve been in the hospital twice since that time (in addition to that one).  For a week each time.  I do believe it’s fear.  The stark reality of what my life is, how it presents itself and how I am not ever going to get any of my old life back.  The burden I’m placing on my family, etc.   Breathe.  Speaking of which, one of the docs at the hospital told me there is an Apple App called Breathe2Relax.  I tried it.  Nice, but hard for me to maintain.

I have often compared it to being a tree, with all of my “leaves” falling off; losing bits and pieces of myself every few months; not being able to drive anymore, needing help with my ADL’s, (activities of daily living)  etc.  All my “tricks” for keeping sane have slipped away and it has gone way, way beyond dealing with pain.  If I could only hang onto what I know helps me stay sane.  The breathing, music, oils, acupuncture, etc.  But it seems I can only hang on for a few seconds at a time now.  It used to be a few days, then a few hours, then a few minutes.  Now it’s seconds.  And sometimes, not even that. 

Then I think about my dad’s death, and how on the 20^th of March it would have been his 91^st birthday.  How close we were.  How little I saw of him, even with him living 50 minutes from me.  Acceptance.  So hard to do.  Help me G-d, please help me stay focused, stay strong, stay in the moment, stay grounded and just, well, stay.  Three hospital visits, the shortest being the surgery, was just overwhelming.  It WILL take me time to get my grounding back.  Sadly, people like us with chronic conditions that are not terminal but in which we bear tremendous, untreatable pain, do NOT qualify for Hospice or assisted suicide, which is legal in my state but not for me.  Something has to change.  It cannot be adequately treated or described and I’m not the only one who tires of it.  My friends and family bear the burden as well.

The increase in the anti-anxiety meds (as opposed to what, the pro anxiety med?) may be having the reverse effect.  At least that’s what it feels like.  I have a call out to the psyche guy who was on my team to ask him.  I would take my own advice and just ask my pharmacist, but he knows me a little bit now.  I thought they were going to admit me to psyche at one point, I was so stressed.  And suddenly, my pain doc thought my pain isn’t neurological WTF??  After treating me for over 12 years that’s what he decides??   A complete reversal?   And being back on my old pain regiment isn’t pretty.

I’ve written this before but it bears repeating.  Doctors want to heal.  And if they exhaust everything in their playbook without success, out of frustration (perhaps) they simply move on to someone they can heal.  They aren’t monsters.  But they do want a “win” and seeing me doesn’t give them that.  I get it.

I’m just trying to hang on here.  Coping.  Sometimes it works, sometimes, not so much.