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Sunday, September 27, 2015

Last Night (UPDATE)

Last night was one of my worst.  Physically, mentally, emotionally and spiritually, I was a mess.  All I could think about was all those pills, silently beckoning me, taunting me, daring me to take them all.  I actually starting calculating how many it would require to get the job done.  Permanently.   What’s ironic is that the fear that often makes my pain spike is the fear that keeps me from exiting out of this nightmare.  I often listen to Eben Alexander’s journey (according to him, of course) to Heaven and back, but last night I started to really investigate him, something I’ve never done, and now the doubt and embarrassment at my own gullibility took center stage and everything that ever left his mouth or graced the pages of his two books flew out the window of my soul, if indeed I have one.

My struggles with G-d are often epic, fraught with the same questions anyone else asks when faced with the challenges I face and dosed with the usual campaigns of proof based on the state of the planet and those who occupy its deteriorating  landscapes and unbreathable air.   I cried, screamed and planned until I finally fell into a restless sleep that woke me every few hours no better off than when I first slipped into bed, hoping it would be my last time.  I was a mess.

When this happens, all my “tricks” for staying present and unafraid scurry off and I am left defenseless, just waiting for it all to pass.  All. To. Pass.  I try hard to think of things that are reasons to keep on keeping on.  Family.  Friends.  The lunar eclipse that’s tonight (though in Seattle, seeing it will be a miracle in its mostly cloudy skies) and my soon to be cataract-free right eye.  Reading again should be something to celebrate (after four weeks of three, four times a day eye drops).

But is it enough?  This is the constant question I torture myself with.  Heck, I don’t even blog like I used to.  I feel I have nothing to say that’s new, nothing to share that’s relevant or helpful, nothing to add, subtract or make clearer.  Oh, my new pipe came and it works.  I could tell as soon as I looked at it that a piece had been missing, which is why it leaked.  So I’ll be dosing before my appointment tomorrow since they won’t be giving me anything due to all the drugs in my body. 

I don’t blame the doctor for being a bit freaked when he saw the list of meds.  And CBD doesn’t make you goofy like THC (the part of cannabis, or as we call it in the states, marijuana, that makes you high).  They can even sell it online as a supplement now.  Wonder how long that will last.  The US is so screwed up I’ve lost ways to count how much so.   Our prison system, our gun “laws”, our denial at what’s in front of our faces.  I am so saddened for anyone younger than 30.  Which includes my nieces and nephew.  

And I wonder if indeed my family would prefer it if I checked out; not for them, of course, but for me.  My sister often tells me "she could never have lasted this long if it were her".  I know she means it as a compliment and a way to let me know she would understand if I took matters into my own hands.  It would not bode well with me if she tried to convince me life is worth living no matter what.  The conversation itself was taboo for many years after her first husband took his life.  For reasons no one could fathom.   And the truth is, you don't know what you can and cannot handle until you're faced with it.  If someone had told me this is here I'd be 10 years ago, I may have ended it then.

I just pray it’s me and my mindset and that there is hope.  Hope for those with NF and all other diseases and disorders, hope that our food and water sources are somehow saved, hope that our air becomes breathable and hope that I get off this planet and onto some other realm that offers a pain free existence.  I saw this short piece the other day.  Who knows if it’s true.  But I liked it:

When Gandhi was studying law at University College, London, a professor, whose last name was Peters, disliked him intensely and always displayed prejudice and animosity towards him. Also, because Gandhi never lowered his head when addressing him, as he expected…there were always arguments and confrontations.
      One day, Mr. Peters was having lunch at the dining room of the University, and Gandhi came along with his tray and sat next to the professor. The professor said,  "Mr. Gandhi, you do not understand. A pig and a bird do not sit together to eat."
     Gandhi looked at him as a parent would a rude child and calmly replied,  "You do not worry professor. I'll fly away,"  and he went and sat at another table.  Mr. Peters, reddened with rage, decided to take revenge on the next test paper, but Gandhi responded brilliantly to all questions. Mr. Peters, unhappy and frustrated, asked him the following question. "Mr Gandhi, if you were walking down the street and found a package, and within was a bag of wisdom and another bag with a lot of money, which one would you take?"
        Without hesitating, Gandhi responded, "The one with the money, of course."  Mr. Peters, smiling sarcastically said, "I, in your place, would have taken wisdom, don't you think?"  Gandhi shrugged indifferently and responded, "Each one takes what he doesn't have." 
       Mr. Peters, by this time was beside himself and so great was his anger that he wrote on Gandhi's exam sheet the word "idiot" and gave it to Gandhi. Gandhi took the exam sheet and sat down at his desk trying very hard to remain calm while he contemplated his next move.   A few minutes later, Gandhi got up, went to the professor and said to him in a dignified but sarcastically polite tone, "Mr. Peters, you signed the sheet, but you did not give me the grade."


Who am I today?  Gandhi, or the Professor?   

Wednesday, September 23, 2015


I had a post about hemp oil from a company called  I took it down not because of the company but because of some concerns I had about all hemp oil and an ingredient that is widely used called Propylene Glycol (PG).

I just want everyone who checks out using a vaporizer with hemp oil to help with the pain understands it all.  There are some oils made with natural ingredients and I’m trying to get a hold of some.  It seems like the vast majority of the oils does use PG from the places I’ve checked.   I’ve been using the “cartridges” that go into the vape “pen” for over a year.  I just switched to the oils, but when it’s heated from the battery in the pen, that’s where the potential danger arises.  So check it out and decide for yourself.

I was impressed with in terms of the team and the service, and all the sites I looked at use pretty much the same products, but a few don’t.

In other news, my cataract surgery is coming up on the 28th and I can’t wait.  My eye has been hurting like crazy.  Hope it’s nothing more than the cataract, though it might be something else.  However, when I had the eye exam, they didn’t raise any alarms about another problem, so fingers crossed.

Pain has been up and down, mostly up.  The weather turned a few weeks ago and will stay this way for some time now.   We needed the rain.  I’ve been leaving peanuts out for a couple squirrels on my deck, and the Stellar Blue Jays are driving them away.  They are the campground bird stealers.  Last weekend I caught a couple squirrels making whoopee on the deck as I closed the blinds.  No respect, I tell ya!

Monday, September 14, 2015


This past June, a cousin of mine in another state has a daughter who got married.  Like all else that is family and friends, it was an event I had to miss.  Today is the first day of the High Holy Days, another event I am missing.  All due to NF.  I’ve missed the holidays (High Holy Days) for years now.  Missing the wedding of a cousins child was one that hurt.  A lot.

Today, I just got a link to a video on it.  It looked like something out of a movie.  So many people I haven’t seen in so many years, half I did not recognize.  Except that I did.  They just looked…older.  If they looked older, I must look like my great grandmother.    I watched as Danielle walked down the aisle, as they broke the glass, as everyone cheered (all with music, no other sound) as they danced, laughed and celebrated the joy of a new generation starting a new chapter of their lives.

These are the things that bring up the pain and make it worse.  These are the things that hurt like hell.  Not being able to share in the joy.  Not being able to dance, to fly out somewhere and celebrate a life changing event, not being able to do the simple things that everyone takes for granted.   I want so much to be in the world and not just of it.  But it is not to be.

And it’s these moments I must remember, must really, really work on remembering, that I am loved.  Not just familial love.  Not just friendship love, but that bigger,  indescribable love that comes from the place we came from, the place to which we are returning, the place that has no bounds, no physical restrictions, no sadness about not being able to do the things that limit me here on Earth due to our bodies or any other kind of restrictions.  A place humans cannot destroy.

I am a spiritual being having a human experience.  And as human experiences go, as they all go, it is a challenge I just may have signed up for, for better or worse.  My job is to complete it.
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