Bravery

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.

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. 

http://iands.org/news/news/front-page-news/970-esquire-article-on-eben-alexander-distorts-the-facts.html

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

Long, but good article.

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!

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."

Gandhi

Who am I today?  Gandhi, or the Professor?   

Vaping

I had a post about hemp oil from a company called HealthyHempOil.com.  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).   https://www.projectcbd.org/article/how-safe-your-vape-pen

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 HealthyHempOIl.com 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 28^th 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!

Generations

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.

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.

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

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!

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