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Sunday, December 13, 2015

Desired Destinies 2

This is a tad different then the first version.  Struggling a lot lately, but my friends from my blog and those who know me outside my blog, not to mention family, keep me on course.  Special thanks to Erin, Carolyn and Becky (and her beautiful daughter, Ashley)!

How many of us want the destinies given to us?  How many of us even know what that is?  We think we might know (It’s our destiny to be together/alone/this career, etc.) but do we really?  I’m not sure we ever find out because it changes, just like everything else.

And how many of us want everything we have?  I don’t mean having everything we want…..few of us do, and even those who think they have everything they want in a particular moment seldom sustain that feeling.  Because there is always more, always something new around each and every corner that we think we can’t live without.  Mostly, we still live.

But wanting everything we have….that’s the challenge.  Personally, I can tell you right off the bat that I don’t want NF (my disorder).   And I certainly don’t want everything that goes along with it; agonizing pain, dysfunctional digestive system, inoperable tumors, isolation due to the pain…..and on and on and on.  The things I actually want are few:  My friends, family, books, music, etc.  The rest, you can have.

And that might be the biggest mistake anyone can make...  Throwing away that which feels profoundly inconvenient, hurtful, useless and empty-feeling (so we think).   But the painful (no pun intended) truth is, my body doesn’t really know what is useless to me and I’m not sure my soul does either.  I haven’t a clue what I am supposed to be learning, but I’m learning something, that’s for sure.  Kindness, patience, understanding, empathy….these are all things I strive for not in spite of my condition but because of it.  And I fall short 90% of the time.  So I pick myself up, dust myself off and try again the next time whatever challenge presents itself.  I can hear the little voice whispering in my ear reminding me, but I often yell over it.  Make no mistake, it’s the quiet voice you should be listening to (unless it’s telling you something bad, but that’s another story).

 We can’t know much of anything when it comes to being here, living this life and seeing all the misery around us.   The good too, but it seems to me that as I age, the good things became more rare.  And I don’t mean because of illness and personal challenges.  I mean in general.  Perhaps it was always this way and the digital age just made it that more apparent.  We instantly know what happens halfway across the planet.  Once again, I’ve weaned myself off the news because it’s just too depressing to read and increases my pain dramatically.

As my need for more help grows, the letting go of control becomes crucial to surviving the lifestyle change. Accepting that I can do less and less is beyond challenging.  And the one thing that gets me through it all is acceptance.

I've posted this song before but I wanted to use it's a lullaby written by one of the Frays for his nephew...but I hear G-d talking to me. 

Thursday, December 3, 2015

Word Salad

I’ve been struggling with words lately.  Or the lack of them thereof.  At least words that make sense to my drug infested brain (all of which I’d flush down the toilet in a heartbeat if not for this unbearable pain….I’m writing this part for any new readers who may not know of all the things I do in addition to just popping pills….and there are many.  Read other entries if interested).  I’ve been wanting to write another post, but all I have in my head is word salad.  Too much news again.  So let’s skip that, eh?

I have been having some stunning visual and audio experiences through meditation, dreams and prayer.  The pain has been stunning, the darkness of the short days difficult for me to get through (always has been) and generally, I’m just flat-out depressed.  The CBD doesn’t work so well anymore, I’m having trouble finding help over the holiday period (or the case manager having trouble finding a replacement for the two helpers who are taking a few weeks off) and the only happy creatures near me is the squirrel and his buddies, the sparrows and the hummingbirds.

My family has visited over the holiday as well as a good friend I met through this blog.  That was great.  Indian food as opposed to turkey.  Not a big turkey fan, though my sister brought over an awesome turkey sandwich from this incredible shop she goes to for such things along with a slice of chocolate cake that was beyond delicious.  Whew.  My brother and his family are off to Hawaii, my sister’s youngest is on her way home from a semester in Eastern Europe (and with all the unrest it was scary for those of us waiting for her to return) and her oldest is getting ready for 10 days in Haiti on a humanitarian trip; it’s what she wants to do.  Public health in faraway places.

My nephew (brother’s son) is still working his tail off to get Carbon Washington on the ballot (to lower emissions output) and their daughter is still trying to decide whether or not to pursue law.  So long as she’s on the right side of it (the law) I’m all for it!  Not that my opinion matters.  Man, I feel old, listening to their life stories at this point.

I’m listening to banging all around me because their having our windows all replaced with energy efficient ones.  It’s cold and rainy and the windows will be off most of the day tomorrow.  I’ve been watching them to the other ones; takes a long time.  I just cancelled my morning help because I will have to barricade myself in my bedroom so they can do the living room first (I will tell them that’s how they have to do it) and then switch in the afternoon so they can do the bedroom and I’ll have help here with me in the living room.  Yikes.   I may have to do a marijuana run.

Wednesday, November 11, 2015

Hope There's Someone

Last night I was watching (again) YouTube videos about consciousness, near death experiences and dreams.  My body was in agony and my mind was racing at a million miles an hour, trying to make sense of what I was listening to, watching, and feeling physically.  After a couple hours I had to switch to some old television show, giving my brain a rest.

I get that my life is my life, my adventure here designed for me and me alone.  I know deep in my heart that I am very lucky in many ways; family, friends, access to my medical needs, food.  I know those things are beyond measure.  I just get tweaked when I hear, like I did in one of the videos, a doctor talking about people who are in the end stages of their lives and how the primary concern is keeping them “out of pain and comfortable’.  What a concept.  I’m not in the end stages of life (to my knowledge) so I don’t get to be kept “comfortable”.   I also don’t get to choose to die, at least not legally (though it is legal in Washington state).  It’s a huge hole in the right to die system.  The line has to be drawn somewhere, yes, but drawing it in front of someone in agonizing pain for over 15 years with no end in sight is….insane.

Tonight I am feeling like I want to end it, right now, right here.  But the thought of actually going through with it makes me so anxious I want to scream.  I don’t know what is worse.  It’s all the word salad about being “punished” for taking my life that stops me.  Everyone tells me “No, Sherri, that won’t happen” but who the hell knows?

One of the YouTube shows was on this experiment done years ago in the UK on the afterlife and communicating with the dead through a radio.  Okay,  then.  I tried to find the book to put it on hold at my library, but I couldn’t find it.  It was called the Scole experiments.  Watch it, it’s fascinating.  Really out there. 

I feel like I’m treading water that’s in an abyss….everything is scary, out of focus and feels hopeless.  Everything.  I’ve never wanted it to end so bad.  I want to see my loved ones who have passed.  I want them to show up for me.  All the gifts I had regarding being in touch with the other side, and there have been a LOT of them, vanished when I had to start taking medication for pain.  Since the opiates do little to abate the pain, I wonder if I can wean myself off of them and stop all together.  I wonder if it would be any different, really.  Scares the hell out of me because it’s already bad.  

 I saw my healer/acupuncturist today…she always helps me.  And I need to do a Shamanic journey.  Haven’t done that for ages.  AND, I need to STOP reading the news.  I’ll. Never. Learn.  Or maybe I will.  Some day.  She told me those gifts I thought I have lost are still there, and pointed out some things I’ve experienced on her table that I forgot about.  I guess I still have those gifts: they are just slightly different now.  Not as fun.

I started going through all my “stuff” the other day; found a bracelet my sister gave me after my first tumor surgery in 1995.  It is beautiful silver with tiny hoops and the word “Strength” on the circle that holds it together.  I need strength.  I may need it to end my life when I get brave enough and the pain is bad enough.  But again,  I don’t want to make that decision because I’m sad/mad/fearful.  I want to make it when I just know I’m done.  When the joy is no longer there at all.  Every time I get a small break in the pain, the desire to end my life vanishes.  But the breaks a few and far, far between.  So I just sleep with the picture of my grandparents and parents, asking for help. 

I’ve been getting horrific headaches.  I don’t normally get headaches but they come in short, painful bursts.  Maybe it’s a sign.  Maybe my sudden urge to cook and actually eat what I make (though small portions) is a sign.  Embracing life prior to moving on.  What a pip, eh?

I know I’m all over the map here….I know I should not be reading the news non- stop the way I do.  I know my anxiety levels are through the roof due to my behavior around this issue.  I just can’t help myself.  The news flies by at lightning speed and it’s all bad.  It scares the tar out of me.  Coupled with this agonizing pain that just doesn’t let up for more than an hour every other day or so (no exaggeration) I can hardly breathe.  Getting out of my head is harder and harder to do.


Tuesday, November 3, 2015

Rainbow Room

When I was a kid, there was this restaurant in Minneapolis called the Rainbow Room.  This was in the late fifties/early sixties.  My family would go there Sunday nights sometimes, and my grandparents from both sides often joined us.  My brother and I (sister was not yet born) would huddle down in the backseat “dodging” the lights that would often flash across the skies, announcing a new movie playing in a nearby theater.

I have occasionally written about my grandmother Ida, my dad’s mother.  She was and still is, long after her death, a driving force in my life.  I often reach out to her across the veil that separates us, asking for her help.  Such was the case last night.  I had a very bad day.  My sister had come by to visit bringing with her a delicious lunch.  I usually am able to gather myself together enough to chat, laugh and have the best time possible given my limitations.  I was unable to do that Monday.  She could see it, and only stayed a short time.  I felt bad, as it is a long drive.  Perhaps I should have called to cancel, but I wanted to see her.

Anyway, last night I was in one of my awful mental/spiritual/physical situations, crying for it to be over.  I begged for Ida to appear to me; to show me something that would help.  Like death.  It wasn’t my usual crying jags.  It was more of a giving up emotion.  I’m just worn out.

The surgery in February was a bust, the tumors are back and hurt like heck; my cataract surgery changed nothing, except that it’s a little worse.  The dry eye makes my eyes hurt.  I did get a new prescription which should be in soon and I’m hoping I can go back to reading….I know I can do audio books but it’s not the same thing.  Reading is cathartic; listening feels passive unless the speaker grabs hold and even then the experience isn’t the same.  So poor me, pity potty, etc.

Anyway, after waking up every hour I finally fell asleep.  Then came the dream.  I was in the Rainbow Room with my family (not all, but I remember some) and my Grandma Ida was to the left of me, eating quietly.  At some point, everyone but my grandmother moved to the other side of the table, down and away from her and me.  Then, suddenly, we were in a hotel room, only it was a room next to a noisy street full of drug addicts and hookers.  I tried to get us a different room.  And I did.  Then I woke up.

I haven’t a clue what any of it meant.   The “hooker/addict” thing could have been about me (well, the addict thing anyway) but I’m not an addict; dependent yes, but as I always say, I’d flush every last pill down the toilet if I could.  But I need them the same way someone else needs blood pressure medication, etc.  Somehow though, seeing her and being aware there was a “rainbow” involved, lifted my spirits a bit.  I went out with my help today to get some things to make a slow cooker soup. I’ve been experimenting with slow cooker recipes, just so I get food in me.  So far, I haven’t found anything I like,   But right now, I smell the aroma of the lentil/Portobello mushroom soup that Maria is making for me..  We shall see.

And maybe, just maybe, I’ll see Ida soon.

Wednesday, October 21, 2015

Calming Influences

As I write this I am watching the Decorah Eagles who are back for 2015 thanks to a dedicated group of people in Decorah and around the country who have donated time and money and hard labor putting back what was sadly, broken.  The cameras came down in a storm, then the nest and then much to everyone’s anguish, the death of Bob Anderson, who made all this possible through the Raptor Resources Project.  It was an awesome effort that culminated in a “starter nest” which these beautiful majestic eagles have taken to.  They are currently making “nestorations” for the coming year so hopefully, we will have much to see (in high definition no less) this year.  I can’t wait.  The camera operators are unbelievable.  If you haven’ t done so, visit them at: and enjoy!  Right now, I’m watching them wrestle with sticks.

Between the live cam eagles and the real life squirrels and hummingbirds, I am entertained when I allow myself to relax into it and appreciate the things that I DO have.  It helps put the pain, frustration and anxiety in the background.  I’m listening to my bilateral music too…all these things help some, when I let it.  Letting it is always the challenge though.  It’s been a rough few days.  Anxiety is high, pain is high, panic is high and I’m not (high) LOL.  Not sure if the CBD is working much; hard to tell.  But I was without it for three days when the pipe broke and I was in a bit more pain during that time so maybe it is working.   I’d like to know how the eagles stay calm.  They have a rough life but they always look so proud, so happy to be alive and knowing what they have to do to survive does not include even a nanosecond of self-reflection or pity.    They would die if they stopped for a moment, and they know that innately.   Wish I could say I know it.

Last night was a bit better after a difficult day.  As I closed my eyes in bed, I gave thanks for it.  I said “thank you for the better evening” and as I did, I instantaneously heard (in my head, of course) “thank you for accepting it” and I kind of got that familiar jolt of understanding that my relationship with those who have passed is symbiotic in nature.  I just have to listen to the quiet and they are there for me.  My loved ones, G-d and my guides.  All of them.  All the time.  And I was reminded that it isn’t enough that I have a “good” day or a good hour; if I don’t accept it, if I am only aware of the pain and the challenges, I will never have a good moment.   Paying attention is essential.

Monday, October 19, 2015


I vacillate a lot here so stay with me.  Dragging under the weight of myself I rear up again and again, not knowing why I struggle to stay afloat in a life I profess to hate.  Not because of what I don’t have; never because of what I don’t have.  Accepting what I do have is always the challenge, always the thing that haunts me night after night then day after day as I struggle to make sense of a question that no one on Earth can answer  Why?  Not “why me?” that sounds so selfish and silly.  Having all this time to do nothing but read the news and try to make sense of what we do on the planet, the mistakes we make over and over again in the name of …of what  There is a strong wind blowing and it’s moving closer and closer to extinguish the flame on the candle that is us.  The one that burned bright at one time.  Or did it ever?  History tells us it struggled to burn brightly from its inception and may only have done so to cast the darkest of shadows.  But staying focused on the light is the only way to win the struggle.  All struggles, regardless.

So I’ve been watching a lot of YouTube videos on near death experiences, spirituality and such.  Saw some great ones with Ekhart Tolle, the guy who wrote The Power of Now.  And I’m trying very hard to remember to just trust G-d.  When that thought hits me, the tension diminishes, just like when I remember that I am loved.   I still pray for death every night, sometimes all day.  I had a great hold on my emotions for several months but it all fell apart.   I try to imagine the pain as something other than pain; something neutral, something pleasant even.  Sometimes it works, sometimes it doesn’t.  Because I have to keep a hold on it every second of every day and it’s impossible to do so.  But all one can do is try.

So I’ll keep trying to keep my head above the raging waters of pain and keep reading inspirational stories and watching/listening  to spiritually based YouTube videos.  They sooth my soul.  Accepting the way things are is challenging, to say the least.  One of my favorite quotes, which I have on my blog (but haven’t thought about lately) is this:

“The desire for freedom, as it motivates us to our natural state is great joy; the desire to be free from things the way they are, great suffering”  Stephen Levine

Thursday, October 15, 2015


My eyesight still hasn’t improved.  Sigh.  It would be nice to get to the other side of one of my challenges.  My tumors in the leg where I had surgery grew back.  And there has been a general increase in their numbers.  See, this is why I get so frustrated and freak out from time to time.  Everyone has challenges.  I don’t think I’m alone in mine for one second.  It’s not being able to get past mine that frustrated me.  Sometimes I can accept it, sometimes I can’t.  And when I can’t, when I start thinking about people who have, and get past their challenges, that’s when things start to de-escalate for me.   Staying in the now becomes a major challenge.  But I work on it.  Every second of every day.  Sometimes I can (do it) and sometimes I can’t.   That’s life.

Good news! (for me).  The eagles are back!  After all the setbacks this year (the nest fell in a storm, the director of Raptor Resources Project passed away), the good folks of Decorah, IA made a starter nest and Mom and Dad took to it!  Cameras are back up and I just checked in on them.  So good to see them working on making the new nest home.  If all goes well, in six to eight weeks we should see (three, hopefully ) eggs!  Three is high for eagles, but that’s when these two have been producing and there have been 23 so far (two the first year). 

So between the eagles on the webcam and the hummingbirds, squirrels, Stellar Jays and some tiny birds I can’t identify all on my deck, I’m entertained.  Now I just need my eyes to come back so I can return to reading.  I started listening to digital books but it’s not the same (for me).  I love to read.

Sunday, October 4, 2015

Eben Alexander

I was telling someone about my thoughts on Eben Alexander and how they have shifted.  Strangely, Dr. Alexander responded to an email I had written a few weeks ago.  And it was personal, not one of those automated responses.  In writing to my friend about him, she sent me this article which I found amazing.

I was right the first time (about him) and should not have doubted.  In doing so, I've had one of the most horrific weeks I've had in a very long time.  Dig deep, before making decisions.  To decide is to cut off other possibilities.

Sorry, I can't get the link to work.  Cut and paste....worth it

Long, but good article.

Thursday, October 1, 2015

Eye Yai Yai!

I was supposed to have a cataract removed Monday morning.  I got there, and was told they were running an hour behind schedule.  Not much I could do about that.  I found four chairs lined up together and was able to lie down.  Thirty minutes later, three staff people came out and explained to all of us waiting (no one had been called in at all during that time) that they were cancelling everyone due to an unexpected death of a staff member.  Very sad.

So I went back Tuesday and had it done.  I had to arrange different rides on Monday and Tuesday and again on Wednesday (my regular person was sick) for the follow-up. At present, my eyesight is blurred and I am actually seeing worse than before.  But they checked out my eyes on the follow-up and said it was fine, the healing is different for everyone.  I have to wear a Captain Sparrow patch (actually, it’s plastic) at night, and put in three different eye drops four times a day for four weeks.  That’s fun.  Just add it to all my other garbage I must take.

I think about all the people in the world who are so dependent on mediation to get through the day.  It completely freaks me out when I realize how little it would take to lose access to all of them and what I would do should that happen.  I started to watch   film based on a real life story about difficult it is to get medical supply companies to listen to new ideas….this one being retractable needles to end the hundreds of thousand accidental needle pricks to medical staff.  It’s called “Puncture”.  I couldn’t finish it.  That kind of stuff angers me and anger isn’t good for pain.

I’m so bored I could scream.  I go out for three days in a row and it’s hard on my body but then I want to go out again because I realize just how bad my cabin fever is.  I don’t notice it when I go for a week without leaving the house, but as soon as I do I realize just how cramped in I am.  Currently, my entertainment is feeding the squirrels and the blue jays.  Pathetic.  I even have this Halloween skeleton rigged up to scare away the blue jays when they get to aggressive and scare away the squirrels.  Anything to keep me occupied!

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.

Monday, August 31, 2015

One Year Ago

I’m finding it hard to believe (on one hand) that a year has passed since my dad died.  A year ago Saturday.  I always feel his presence around me but I did particularly  this weekend and then remembered that date.  I still miss him so much.  Thinking of him gives me such comfort.  And I sure needed it this weekend.

We had this huge windstorm on Saturday and by noon the power had gone off.  It flickered on and off six times before it died.  Since I don’t go anywhere, I had no clue to the extent of the damage.  I did watch as this tree outside my window bowed completely horizontally at one point.  Freaked me out.  A friend of mine was over and she left about 2 because we had no idea how much worse it might get.  She lives about 30 minutes from me and I told her to call when she got home.  After close to three hours, I figured she had forgotten.  I had no phone either, except for my cell and I didn’t want to drain the battery just in case.  It’s not a smart phone.  She finally called and told me it took her all that time to get home.  Trees were everywhere, lights were out, stores were closed.  Because of the draught, the water doesn’t soak up as well and the oil on the streets makes driving dangerous.  I was hearing sirens of all kind non-stop for hours.  I gathered candles and my one flashlight (which I just bought batteries for a month ago, thank heaven) and got everything arranged “just in case”. 

Between my bad eyes and the darkness, reading wasn’t an option and the battery on my laptop drained pretty fast.  I had no service anyway, so there wasn’t much to do.  I had snack type food, but everything else needed to be cooked, which wasn’t an option.  Plus, I didn’t want to open the freezer even once if I could help it.  It can keep things frozen for 24 hours usually.  I went to bed, woke up a few times and saw that the power wasn’t back on.  By morning, I phoned a friend whose power was on and she checked online for me.  It read that power might not be restored until Tuesday or Wednesday!  So I called my brother, who had no clue about the outages.  Over 150,000 of us, but he lives 50 minutes from me and was fine.  So he was going to come get me and an hour later, my power came back up.  First thing I did was check the freezer.  The only thing that melted were my blueberries and ice cream, both of which could re-freeze safely.

I am lucky and grateful, because over 20,000 in my area are still without power.  They have to move the trees before they can fix the lines.  There is someone I need to call but her phone isn’t working yet so I’m guessing it’s the power.  We are so dependent on so many things out our control it’s beyond frightening.  And my UTI hasn’t left yet.  And the pain has been bad, the weather’s not helping.

I was able to listen to my bilateral music a bit before the batteries drained, so that was good.  But the pain was not happy.

Sunday, August 23, 2015

New Eyes

My relationship with pain has changed over the past six weeks or so.  It started with that session I had with Divanna, my healer and acupuncturist.  That was the one when she coached me into saying (“with love” was my addition) “With love, I give back the pain that was given to me (with love) for this incarnation”.  When I repeat those words, along with “I am loved, there is no fear” which I got from listening to  Eben Alexander on YouTube and from reading his books “Proof of Heaven” and “Map of Heaven”.  Whew.

Also, I have been listening to Bilateral Stimulation music from David Grand and my new favorite, Jorge Henderson Collazo (on YouTube and I purchased five because it’s cheap and easier to access) with headphones.  The headphones are necessary to get the full effect of the bilateral stimulation.  It’s much like eye movement therapy, which helps people who have had a trauma or a chronic condition; really helps for those with PTS and so forth.  I highly recommend it.

Is the pain still there?  Yes, it is.  Do I still have times when it feels like agony?  Yes, of course.  But when I go into “I am loved” mode, it becomes tolerable.  And I have a lot of challenges coming up so I’ll need the support.  I am having cataract surgery on September 28 and so far, have no way to get there because it’s early in the morning and my regular help can’t do it then.  And I have to go back early the next morning so they can check it.  The procedure itself is at the doctor’s office and only 15 minutes (but a total of three hours for prep, etc.) and no general anesthesia.  But the doctor saw the list of my meds and doesn’t want to give me ANYTHING because he needs me to be awake.  I haven’t told him all this stuff doesn’t make me sleepy but I think I’ll just toke up before I go.  He said there was no pain so I’m not really worried about it.  And I’ll find a ride.

See, these are the things that challenge my relationship with pain.  Six weeks ago, I’d have been worrying about all this and getting all stressed out right up until the surgery, which is a month away yet.  Now, I use the bilateral technique along with the words I say (and I don’t just repeat them over and over without meaning; I wait until it really sinks in and until I feel my body let it is and relax.  I would like to take the music with me but I don’t have anything except the IPad.  It’s not even on it and I don’t know how to get it on it.  I just go to YouTube with the iPad.  What I bought is on my laptop.  Not sure if I can access there Wi-Fi while I’m there.  But I’d love to listen to it while they are doing the surgery.

So I’ll keep practicing the relaxation and looking for the right person to take me (I’ll call the supervisor next week and let her know I’m needing someone else for that date if I don’t hear back from the people I’m checking with) and I’m sure it will be fine.  The stupid eye drops (three different ones, all with different directions over a four week period) would normally send me over the moon too.  Very confusing and I’ll have one less eye to read the directions during that time.    But in the end, I’ll go back to the optometrist and get a new prescription and I’ll be able to read again!!!  I miss it like crazy!!!  New eyes, both literally and figuratively

Thursday, August 13, 2015

Pain Meditation

I posted a new binaural pain meditation piece that I’ve been listening to (on the right).  If you go to YouTube you can find many different binaural beats; some for meditation, sleep and this one is for pain.  It really does help if you give it a chance.  Use headphones, get in a comfortable position and just listen to it when you have a chance to be quiet for at least 30 minutes or so.  Humming with it also helps.  And I’ve been repeating my new mantra: You are loved, there is nothing to fear” and, my new favorite “With love, I give back all the pain that was given to me, with love.”   Something shifts inside when I say those words and it's like the air going out of a balloon in terms of pain relief..

I had a hard day today.  A busy week.  I saw my pain doc on Tuesday, FORCED myself to go shopping with my help on Wednesday (as I haven’t done that in MONTHS) and today, saw my healer.   So I’m in a lot of pain today, even though seen the healer usually helps.  I’m listening to my pain meditation while I write this.  Not the way you should do it but sometimes, having it on while I do something else takes my mind off it enough so that I’m not “trying” to force it, you know?  I listen to the one on lucid dreaming at night, though I don’t want to fall asleep with it on because it’s You Tube, and an ad may jump out at me in the middle of a REM cycle (LOL).

My visit with the pain doc went okay; a new doc was there.  There is always someone new that has a bunch of questions for me.  This doc was kind, sensitive and listened well to what I had to say about NF,  pain and all I do to manage it.

I’m keeping this short, as the pain is bad.  Just wanted to check in!

Monday, August 3, 2015

Hornets vs Bees

About six weeks ago, I wrote that the Decorah eagle camera came down in a storm.  Two weeks later, the nest came down.  Last week, Bob Anderson, the guy who makes all the Decorah eagle stuff possible (through Raptor Resource Project….his passion was actually Peregrine Falcons) passed away suddenly.  I wept.  Between that and the killing of Cecil the lion, I’m about to nix the news from my daily list things.  It makes the pain worse anyway.

So my new approach to aiding in the reduction of pain hasn’t been working the last few days.  I really think the emotional roller coaster is contributing to it.  That and I had gotten so comfortable with the meditation I lulled myself into believing I had somehow overcome the pain altogether.  Not.
So I start to practice again, along with icing my legs.

My newest challenge is a bunch of black hornets that are annoying my hummingbirds, not to mention me.  I made a DIY hornet catcher out of a plastic water bottle; just cut two holes (flaps pushed inward so they get in but not out) and filled with sugar water.  I catch a bunch, but there are always more.  And then I thought about Cecil and how upset I was and ask myself, am I that different than Walter Palmer, the trophy killing , idiot?   It’s easy to laugh at that but really, killing is killing, right?  Of course, these guys are hardly majestic.  See?   I did it again.  Justifiable homicide.  They are pests, they sting, they scare away the hummingbirds.   Bees I leave be.  I eat honey and they are dwindling in number.  They are essential to the environment.  But hornets?  I’ll have to look that up.

Maybe that’s why the pain is so bad.  Guilt.  Craziness.

A repeat song

Monday, July 13, 2015

What Am I Missing?

First, the not so good

Oh man, it almost never gives me a break anymore, not for a day, not for more than a precious few hours (sometimes).  I laugh when I hear people talking about how they “can’t” meditate for twenty minutes (at all, let alone daily) because they can’t “clear their heads”.   Clearing your head is not, and never was, the goal.  The goal is to be aware of your breath, to watch it as you inhale and exhale (I exhale a couple of counts longer than I inhale; that’s good for stress).  But for me, if I am not in that state all the time, the pain is intolerable.  And let’s face it.  All. The. Time. isn’t gonna happen.  I’m no monk.  I’m just a grown woman in agony from tumors that grow and grow and hurt and hurt and never seem to want to LET. ME. GO.   And that’s what I pray to G-d every single night.  LET. ME. GO.  Moses asked G-d to “Let his people go” but that was different.  Moses wasn’t asking for death.  He was asking to be free.  And in a similar way, that’s what I’m asking, Dear G-d.  To be free from this agony.  And once dead, will I be?  Or will it be worse (if I take my own life)?

I try and imagine what it is I’m missing.  What “t” didn’t I cross, what “I” didn’t I dot.  Okay, okay.  I never got married.  Never had kids.  Never had a career.  But it’s a little late in the game, if that’s what I’m supposed to have done.  So what?  Now I have to wait this out for who knows how long, because I missed those things?  Naw, that’s not it.  No way is that it. I’m being facetious.    I’m missing something bigger.  And as this goes one, I think I’m moving further, rather than closer, to that knowledge.  I’m too tired.  I can’t think, because of the pain.

Getting Better 

I had an appointment today with my healer/acupuncturist.   She has saved my life in many ways, with her energy work, her oils and her instructions to me while she works on me.  Today was a very powerful day.  I was in tremendous pain, and she asked me to give back the pain  (to whatever power I wanted to call it; G-d, Mother, Father….) and I had this huge opening.  I was doing what she instructed when I suddenly whispered “I give back all my pain (in whatever form, as instructed by her) with the same love in which it was given to me.  Wow.  That stopped me in my tracks.  I realized in that instant that (as everyone has been telling me) although this FEELS like punishment, it is not.  It is love.  It’s all love.a

If thinking about death scares me as it sometimes does, I try to remember that every single person you know, everyone you don’t know, everyone you’ve ever met or will meet will die, it somehow comforts me.  The unknown of it still freaks me a little, but it can’t be worse than living.  At least not
for me.  Perhaps I shouldn’t tempt….whatever.  I am currently watching and listening to a debate on YouTube between a couple rabbis and Christopher Hitchens, the (nowdeceased) famous atheist, on the afterlife.  It is interesting, listening to whether or not an afterlife exists.  There are several of these on YouTube and they all fascinate me.

I was just reading about this nine year old girl with some horrible blood cancer who has to spend the next nine MONTHS in the hospital to attack the cancer aggressively.  It was in the news because she is a Taylor Swift fan and was disappointed because her hospital stay means she’ll miss her concert.  Taylor Swift saw (her dad put a video of her on Instagram, hoping Ms. Swift might give her a shout.  She did see it, and gave $50,000 toward her medical expenses).  I read that article and felt ashamed to be bitching about my life.  She’s NINE YEARS OLD.  I don’t understand G-d; I don’t understand humanity (if that’s what you can call us).  I watch all these documentaries on nature and think about how we have decimated this planet and how we kill anything that looks at us cross eyed and I wonder.  That’s it.  I just wonder.

A good YouTube to watch is Eban Alexander talking about his book “Proof of Heaven”.  There are several, but the one that’s a little over an hour is the most complete.  He had an incredible near death experience while in a coma.   He’s a neuroscientist/doctor so he was coming from a very different POV prior to the experience, which should have killed him. Very interesting and helps (for me) calm the nerves.  He speaks of not being afraid, of being loved.  Sounds hokey; you have to hear (or read the book) the whole thing.  I plan to read his follow up book (I read the first but don’t own it) called “A Map to Heaven”.  Wonder if you can use Google maps or GPS?  LOL.

Monday, July 6, 2015

Heat and Pain

Seattle is in the midst of a heatwave.  I know for many parts of the country and the rest of the planet, high eighties and mid-nineties seem like a cool breeze, but we are acclimated to mid-sixties and seventies in the summer.  Mostly, we are acclimated to rain, with a few eighties now and then.  This is torture.  Few of us have air conditioning and fans cannot be found in stores anywhere.  My brother, bless his heart, convinced a guy at Home Depot (bless them) to let him pre-pay with his credit card for one that was on order for them.  Seattle hasn’t seen this ever.   Not for this long.  A year and a half of warm weather.   I want the dreariness back, even though that is painful for me as well (physically).

It’s a free standing one that you vent out the window and it has saved me from further torture.  Took my brother and his wife two hours to get it in!   I am so blessed to have a family that cares about me.  Between the pain and the heat, I have been going insane.  Mostly with worry over the planet and climate change.  Anyone who thinks it isn’t real needs to get an education.  And I’m not talking about the increase in the temperature.  That isn’t climate change, but part of the fall-out from it.   Watching documentaries on nature and knowing what we have done to this planet is sickening to me.  That’s my rant.

The heat has made the pain worse, because everything swells up.  I don’t know, truth be told, and should stop trying to figure it out.  It is what it is.  And it hurts.  I just read another article on Huffington Post about assisted suicide and the lack most states allowing it.  I wrote to one of the contributors of the article about how, even with states that allow it, it leaves out a huge population of people who don’t have a terminal illness which will kill them fast, but rather, a chronic condition that will kill them eventually, usually slowly and painfully.

The former is better for the patient, though they may not agree at the time. The latter may be better for loved ones in terms of having you around, but then, watching you suffer is no joy.   And it’s really no joy for the patient.

Wednesday, June 24, 2015

Bye, Bye, Birdies

The eagle camera got burned to a crisp during a bad storm, and the eaglets are hanging around the nest so they can’t do anything about fixing or replacing it until they disperse.  And the head guy at Raptors Resource Project (Bob Anderson) had a bad health scare and was unavailable to take a look at it.  But everyone knows (or is pretty sure) it’s going to have to wait a while.  Actually, the eaglets are usually dispersed by now anyway and there isn’t much to see but I sure miss it.  As you can tell by my last post, I’ve grown to adore bald eagles.

Yesterday, June 23, was my birthday.  My family and I celebrated a few days early as they are both in Minnesota right now, where they are unveiling my father’s headstone.  In Jewish tradition, that happens one year (or thereabouts) after someone dies.  He died at the end of August.  It’s really not that early because we use the Jewish calendar.  Hard to explain how it works here, so just trust me on this.

My body doesn’t know my birthday so the pain was doing what it usually does.  Give me grief.   My friends and I also celebrated early as they were unavailable on “the” day.  So I went to the dentist and had my teeth cleaned.  Happy Birthday, teeth!  I got some beautiful cards from good friends and extended NF friends; had some wonderful email conversations, one with a long lost friend who got back in touch with me after about a two year absence.  That was nice.

My next batch (I haven’t had many lately) of books comes in on Friday (Library on Wheels) and I’m looking forward to that.  I have been reading via Kindle, but I like to hold a book.  I’ve become like one of those “old school” women I used to laugh about when I was in my twenties.  They just couldn’t get with the program, I used to think.  At least I’m computer savvy.  But I started learning in the mid 80’s, when they first came out.  Thank goodness.  I still don’t text, I still don’t have a smart phone and I still have a landline.  But I’m home most of the time and don’t need those things.  I DO need the landline because my “I’ve fallen and I can’t get up” thingy is hooked into my phone.  I know you can get them attached to your cell phone, but it would have to be on all the time and I’d need a more expensive plan, one that Medicaid doesn’t cover.

The pain has been bad, the CBD oil was a bust (though I haven’t taken it regularly; but from what I read, the results should have been showing up immediately) and I need to order more essential oils

The weather has been gorgeous, very surreal for Seattle in June.  Dry as a bone, scary as hell.  I have too much time to worry about the shape our planet is in.  Beware of your carbon footprint and I don’t just mean your car.  My nephew is very involved (and employed by) getting the carbon Washington initiative on the ballot.  He said it’s the most comprehensive one in the country (or did he say world?).  Anyway.  Be well.

Saturday, June 20, 2015


I first started watching the Decorah eagles last year.  From hatch to fledge.  I did so this season as well, and it is one of the things that keeps me sane in my insane body.  It’s a bit addicting, watching these beautiful creatures and learning about them from everyone on the chat.  The moderators are kind and informed and the chat is a respectable place to be due to the moderators input and influence.  There are whole schoolrooms who check in and ask questions, so keeping the chat respectful was essential.   I’ve been on other live cam sites and most don’t have moderators, let alone people who are respectful of everyone else.  Today is National Bald Eagle Day so I thought I'd post this.

This particular eagle couple (they mate for life) is the most famous on the internet.  Just type in Decorah Eagles in your search engine and you’ll find many references to them. YouTube has a bunch of videos of them, and there is an eagle documentary that features these two birds.  Each year, the female lays three eggs; that’s high for eagle couples.  Usually it’s one or two eggs, but she has consistently laid three.  This year, was D21, D22 and D23.  They do not give them names in Decorah.  The “D” is of course, for Decorah.  And the numbers represent the number of eaglets she has produced.

Sadly, last year was not a good one.   The gnats were especially bad and the eaglets fledged (they said on time but the gnats were influential in their fledge) and one was injured and broke a wing and though healed now, is in captivity (training to be an “ambassador” for eagles which means he will be a teaching bird once trained), another was electrocuted almost immediately and the third was also electrocuted later.  Decorah has been retrofitting the power lines to make them safe, but not all are.  Perching on them is dangerous for the eagles.

This year was spectacular.  The three birds seems loving to each other; they do have some fighting, but it’s mainly to teach them how to take care of themselves once they are on their own.  Now that they have fledged, mom and dad will keep teaching them hunting and survival skills for a few months and then they are on their own.  It is very hard to turn away from watching them and the Raptor Resources Project, which is who has the cameras set up (the operators of the cameras do an awesome job of panning and close-ups daily), is an incredible project that teaches about raptors of all kinds.  Donate to them if you can, as they are run by volunteers for the most part.

I am including a screenshot I took of them as babies, just over 75 days ago.  They grow quickly and in two and a half months, are close to grown.  However, they don’t reach adulthood for five years.  In the wild, they live 30 plus years if they are lucky.  Man is their biggest threat.  They are protected under Federal Law, though not endangered anymore thanks to the laws put forth in the 70’s.

Babies to the first one to fledge.  Go to YouTube and type in Decorah Eagles to see lots of videos of these incredible birds.  Keep watching the fledging one until he leaves the nest.  The jumping and hovering and wing flapping is practiced for several weeks before they take off

Just added a screenshot of all three!  On a branch near nest 1.   They were raised in nest 2

I thought the song below was appropriate for some reason

Wednesday, June 17, 2015

Appreciation, Love and Humor

My dear friend Becky, whose daughter also has NF, has been telling her friends about me and several have sent me the most beautiful inspirational cards.  I am beyond touched that total strangers to me would take the time to send me these cards through the mail, encouraging me and sending me love.

 Times have been very hard since the unsuccessful surgery in February.  I don't get out of the house more than two or three times a month, and that's mostly for doctor appointments.  The pain is so bad I'm afraid to leave.

As I have written and YouTubed about pain management, I realized today (after reading a piece in Huffington Post about it) I have been missing discussing something; having a sense of humor.  For me, that includes movies and yes, cat videos.  So I am putting one here for your enjoyment.  Humor is indeed the best medicine (along with my addiction to the live cam eagles in IA; they have almost all fledged so I won't have that for several months, then it starts all over again (for the eagles))

And thank you all from the bottom of my heart, for your unbelievable support of a total stranger.

Love to you all

Friday, June 12, 2015


Pain through roof again all week.  Bit of a short break Monday but those breaks are far too few, far too far between and give me very little relief when they do come.  But you take what you can get, right?  A friend and her adult daughter (both of whom I haven’t seen for ages; daughter lives in another state now) were just here.   I felt bad because I’m in so much agony and wasn’t a very good hostess.  Hang in there, I surface again.

I medicate, meditate, use oils and call in every damn possibility for help, spending money on CBD and anything else that just might make a difference.  But to no avail.  I have long talks with my dead cat, my dead dad,  dead mom, aunts and grandmothers.  Are you seeing a pattern?  I yell at G-d and plead with Him (if He’s real, if He listens, if He cares….with all the destruction we have rained down on this planet, I would imagine He doesn’t hear me at all) to make it go away or please, please, please take me.

I have these conversations often.  I never use to cry but now I do, often.  I pray and work hard on making my stay here as meaningful as possible, often.  But all I want to do, is let go and leave.    What am I missing?  What have I overlooked?  What can I do to make the world a better place?  What can I do to expedite my exit?  It’s getting harder and harder for me to put words together.  Hmmmm.  Okay.  Surfacing.

Here’s a  kōan  for you (if a tree fell in the forest and nobody heard it fall would it make a noise? kinda thing)  A person (say me) lives for 15 years in pain that cannot be controlled anymore.  Opiates, marijuana, meditation, oils, blah, blah, blah,  NOTHING works.  She’s miserable unless she’s “out of her body (meditating, etc.) which is impossible to achieve 24/7, at least for her.  But the key, is “out of the body” right?  She can’t sustain it on her own and only gets to that level for a short few minutes every few hours and has used every trick she knows.  Short of a coma, how do you stay in that state?

And then it hit me.  I suddenly started thinking of my mother and the fact that she died of an Alzheimer’s related illness.   I thought, shit, if I end up with that, I’ll be out of it AND in agony, how will I communicate my needs and will they be met?  And then I thought “I wonder if being unaware of yourself if you’d even be in pain.  Or whatever other ailment you might have.  Now surely, it doesn’t mean those who are paralyzed can suddenly walk.  So suddenly being out of pain doesn’t make sense, especially since it is so obviously a physical manifest of a tumor disorder.  But has there ever been a study done on this?  Makes you wonder.

Here’s the thing.  No one, not especially your loved ones, wants to believe it’s as bad as you (are attempting to) describe.  People start to think “it just CAN’T be that bad” because it’s easier to deal with thinking your loved one is starting to lose it that to think the torture they describe is real.  How can you be alive with it like that? They may wonder.  And conversely, you DO laugh. You DO still walk around some (I do.  I guess being in this kind of agony and dependent on others for your mobility would be even more hellacious) therefore it CAN’T be that bad.  Like anything else, you have to experience it yourself, and trust me, I would wish this on nobody.  Not. One. Soul.  Not because I’m such a good person but because …. because, that’s all.

Wednesday, June 10, 2015

Charlotte's Web Update

I’m on day three of my Charlotte’s Web CBD oil and have noticed some things.  Don’t want to get to excited just yet because my symptoms do change by themselves for short periods of time.  However, today I noticed something I haven’t had for months: feeling on the bottom of my feet!  AND, I have no idea if this is connected, but my sense of smell, which has been almost non-existent,  is coming back a bit.  Again, the weather here has been hot (though not humid) and for some reason, the pain has been very bad.  I don’t understand that because if it’s nice out, it means the barometer is normal or high and usually that’s a good thing.

I took it three times on Monday and Tuesday and plan to do the same today.  It has also helped a bit with my anxiety.  The pain, not so much.  But all these other things contribute to the pain being bad so I welcome any and all changes.

Here’s the thing.  If you have been dosing yourself (as I have) with opiates and other medication for years on end, our bodies might not respond to something that is more “natural” than the meds.  I mentioned it in my other post and I think it’s true.  However, I will try anything and everything I can before throwing in the towel (so to speak…not talking suicide). 

Visit  to find out more, and try one of the oils.  Expensive, but could be well worth it.  Especially for seizures.

What’s odd is, Neurontin, which I take, was initially marketed as a seizure medication.  Then it was used “off label” (meaning not yet approved by the FDA) for pain. Now it’s prescribed for pain.  CBD was initially used for seizures….now they have found it helps with many other ailments.  Live and learn.

If you've never heard of the Capital Steps listen to this.  They are very funny and on NPR on occasion.  Enjoy

Monday, June 8, 2015

Charlotte’s Web CBD

Remember how I had surgery in February to have some tumors on my leg removed?  And one on my arm (though he took more than that and now it hurts worse than it did before).  Well, the ones on my leg are growing back.  Once again, I can see my leg pulsating with the tumors beneath the surface.  The pain is excruciating and at the same time, I cannot feel my feet anymore.  Impossible to explain but the closest I can come is comparing it to when you bang your elbow and it zings.  That’s the feeling.  Constant painful zinging but also numb.  Really.  No, seriously.  Good thing I sold my car.  Not that I drove it.  Trying to humor but it’s getting harder and harder.

I need to update  my medical marijuana card and can’t get in to the doctor until August.  I still have this month left on the card, so I have to go in and stock up until I get it renewed.

In the meantime, I’m still waiting for my CBD oil that I ordered online to get here.  With all the junk I take, I’m not at all sure it’s going to make any difference.  The CBD that I smoke now helps sometime, but mostly, I just have to stay flat on my back and distract myself every day, all day.  I try and put myself in a state of suspension and stay in the moment.  Anyone who meditates knows how hard that is to do for 20 minutes let alone 24 hours a day, minus when you’re lucky enough to sleep. 

The Next Day

My CBD oil was in today’s mail!   It’s from CW Botanicals (Charlotte’s Web) and as I mentioned, is that strain I’ve been waiting to become available for the last two or three years.  It was very hard to come by but now, you can get it online.  I’ve been reading the label and they can’t make a lot of claims or even tell you how to use it.  Some broad strokes which I will take into consideration.  It’s very expensive.

I read a couple reviews and one was from someone with anxiety issues which helped.  I am through the roof with my anxiety.  Considering all the CBD  I smoke, I’m thinking it won’t be a problem mixing it with all the drugs I take.  Fingers crossed.


Okay.  It’s been an hour since I took it and nothing has changed.  Perhaps I need more doses, more time, more patience but I’m thinking that all the pharmaceutical  crap I put in my body day after day is laughing at the CBD as it tries to bump its way into my bloodstream.  Ha! All the medication is laughing.   What do you think you’re going to do?   We’ve all been at this for 15 years; her body is more chemicals than blood.  And we don’t work anymore but she has little choice.  And YOU certainly aren’t the answer!!!   Sorry, I tend to personify everything from my hummingbirds to a stuffed cat I have, lacking the ability to care for a live animal.  Sigh.

More doses.  More time.  More patience.  Okay then.

Monday, June 1, 2015

Brave but not Unafraid

I was watching this movie last night, a real sleeper, entitled “Northern Borders” about a young boy who is sent to live with his grumpy grandparents.  Great, cast, great story, superb acting all around.  There was one line that stuck out to me; maybe because it was said on two different occasions.  Grandma to grandson “Being brave does not mean being unafraid”  Wow.  That one hit me right between my peepers.

Brave but not unafraid.  That’s me in a nutshell.  I can never figure out why people often tell me I’m brave.  I always dismiss it, thinking they talk to me like I’m a child.  Just trying to cheer me, etc.  My computer guru was here the other day because I needed a bit of a tune-up. Haven’t seen him in ages.  He told me I was brave for heaven’s sake.   So I started really giving it some thought.  Because I’m afraid much of the time, especially  when I’m spiking in pain like I am right now.  Then all the nagging fear and “what if’s” come a’callin’ big time  I suddenly can’t stay in the moment and that leads to….well, you know.  Anyone dealing with a chronic condition of any kind, be it pain or not, knows that feeling of ‘WHAT IF I CAN’T ACCESS MY MEDS, WHAT IF IT GETS WORSE, WHAT IF I CAN’T WORK, WHAT IF…”  .I drive everyone crazy.

I do all I can as anyone who reads my blog knows.  And I keep on getting up in the morning and I do all my rituals, the same as anyone else, healthy or not.  Do I spend more time alone and flat on my back than a lot of people?  Yes, I do.  But the point is, whatever rituals and daily duties I have, they are mine, just like yours are yours.  To keep going when we (when I) want to quit and lay down my sword, take my bats and balls and go HOME or whatever you want to call it, is what makes us brave.

I hope that G-d or whomever, whatever, is on the other side agrees with me.  Because I get very, very close to the abyss sometimes.

One of my nieces was just diagnosed with Crohn’s Disease.  She’s young, 21, but smart as a whip and immediately started researching it and how to approach it with diet, etc.  As it happens, public health and nutrition is her major.  She’ll do fine.  I told her to go to a forum on Crohn’s if she needs support.  She already found out a fellow student has it.

As for me, I just ordered CBD oil in the strain I’ve been waiting to become available to the masses for years.  One. Day. At. A . Time.   A few years ago, I was devastated I couldn’t get it. Now, a couple clicks, and it will be here in a couple weeks.

So hang in there and don’t worry about fear.  It’s designed (fear) to defeat you.  

Monday, May 25, 2015

Quagmire (with pudding)

The days of pulling myself out of the quagmire of pain feel relentless, each foot threatening to lead the next astray as I forge, then tiptoe, on ahead.  Astray from what I do not know.  One or two tolerable days and bam!  I’m in for weeks on end of endless torture.  Asking myself “how much more” is futile yet seemingly, unavoidable.   I’m trying to out of my head and stay away from the fear, but when the pain hits the fan like this….it’s near impossible.

I did get a call from a Reiki guy who does it long distance.  The last time, I felt my own hands grow warm as I put them in the appropriate positions (I have a level one Reiki certificate though I never do it.  Level one means you can do it on yourself) and felt relief almost instantly.  Then again, I was in bed and almost asleep.

Although it’s not warm, the humidity is high, and low pressure always makes the pain worse.  But I doubt moving to a dry climate would help, given all my support systems are here in rainy Seattle.  So I watch my hummingbirds live and my eagles per Webcam, reading, listening to music, watching movies, writing and trying not to …whatever.

Today the neuropathy has me by the short hairs.  It’s been that way for over a week.  Trying to eat and stay hydrated but it’s hard to remember to do so when it’s like this.  Then I read about people who have challenges even greater than mine and I spin downward.  Yikes.  I hate this and I hate that all my entries are so negative.  I go back and read some of more positive ones, back when I had enough “good” days to manage a positive outlook.

Two of my three nieces were just here for a visit; that always cheers me up!  Listening to their college stories and forcing them to listen to my antics back in the day…a gazillion years ago!  We laugh.  It helps.  And I just read a recipe for chocolate pudding made with avocadoes.   One of my helpers got me all the ingredients but the avocadoes aren’t quite ripe so we’ll try for tomorrow to make it.  Actually, I’m not a pudding person but it should be high in calories, which I need, so worth a shot.  Here it is, if you want it:

1/2 c. unsweetened cocoa powder
2 ripe avocados, pitted and peeled
1/4 c. skim milk
1 tsp. instant coffee or espresso
6 Tbsp. honey
1 tsp. vanilla extract
Orange zest, for garnish
Toasted coconut flakes, for garnish
Flaky sea salt, for garnish
Put avocados, honey, skim milk, cocoa powder, instant coffee and vanilla extract in a food processor. Blend until smooth.
Scoop pudding mix into a glass bowl and cover tightly with plastic wrap. Chill in the refrigerator for at least 30 minutes (up to overnight).
Once chilled, spoon into four bowls and garnish with toasted coconut, orange zest and sea salt.

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