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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.  
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