Kindness

The things I heard them say
hurt
and I would go upstairs                                    
and sit and be
quiet.

The things I didn't hear them say              
hurt even more than I can
say
- so much that I have to                           
go out and be
among other people who                   
have lives and hurt
as much as I do
or more, but
don't know it.

But some do 
- and it is for you I write
there is no karmic re-alignment
no vengeance
no schadenfreude
and all you need to do
is be your loving
Self
and be kind to someone
you don't know because
that doesn't hurt.
                                                      

Blindness is....

If love is blind

then indifference is

the perfect clarity

of everything you meant

to do or say

but didn't -

and the millions

of moments that

added up to

seventeen years of bliss 

(yes, bliss)

but I guess were

wrong about how

happy you were...

So I think I'd rather be blind.

How to rape, how to violate, how to force someone to lose everything.... but I'm a ghost, so it's all okay... right????

(Cary killed himself within a few days of that phone call.  I just didn't find out about it until a couple of months later.  But that's another story... "Rape is Rape is Rape: A Love Story", a tale I will tell till it stops playing in my mind's eye, and that could be awhile...)

So it goes....

"Poo-tee-weet" sings the bird

I wouldn't mind knowing who my readers/watchers/listeners are in France. There are some in Australia, Austria, India, Latvia, and a few other countries. Send me a few comments. I realize this is a very personal blog/vlog, so thank you for being here.  Really.  But, is it because you have been struck with the same sort of dis-ease?  Or is it one of those instances where something is so horrible that you can't help but look??  What is it that captures interest?  I only decided to do this because I thought I was going to get well.  I thought it would be good for me.  I'm not getting well though.  Mind you, I've only had about three, maybe four, sessions with Dr.  Tompkins (this time) - The Burke Pain Institute - and the reason you probably can't find much about her online is because she is so busy, AND she's got to monitor her own health as well and doesn't take chances, like the day I went in smelling like incense from an incense burner that had been packed for years in one of my boxes.  I couldn't smell it.  She could.  That scared me, because if she's that sensitive, but knows what it is, how am I going to know what's doing this to me??  She let me stay for 10 minutes that day.  But she has to.  I seem to be worse here.  Dog hair?  I don't know.  Altitude? I just don't think I'm supposed to be alive.  I'm a mistake. Let's go with the "Train" story.  Yes, I'm sticking to that story (back up a few posts).




      me at age 10 crossing 
      the tracks

               



    

                                                                
                                              Huh???  Where am I??
                                              Where is everybody???

                                                 I don't feel well....

                                                                                                                                                    

video June 25

video June 25

video June 24

These videos are not quite in chronological order.  I'm posting them when I can, but will try to keep them in better order.... try.....

Video log June 23

btw....

I don't have to tell you I'm not very computer savvy - can't hide that fact very well. But also, I keep running us out of Internet.... I didn't know Internet wasn't unlimited everywhere in the Universe. So I haven't been able to load all the videos of me crying, throwing up, sleeping, not sleeping, and mostly, just lying here.  Uh huh, I lead a totally indulgent, enthusiastic, rip-roaring, hair-raising dramatic life, I know...  Plus, my heading has disappeared so I have to go in search of it.  Also, I do need to back-track and fix some of the first posts that came out all mangled and in random un-patterns that pile onto each other like a train wreck. In the meantime, July 12 is when we get Internet again.... 

Didn't make it to my session with Dr. Bev today which is not good because I need everything I can get and was going to start recording our time together connecting the dots.  She retires in a year and with all the data she has collected throughout her career, she'll be writing about this bizarre, misunderstood dis-ease. So please look for her - Dr. Beverly Tompkins of the Burke Pain Institute.  This woman has done more for people with M.E. than anyone.  She is brilliant, kind, empathetic and patiently explains things in a manner even those of us with moldy brains can comprehend.  Yesterday I saw the local gp.  She had little, or no, cognizance of M.E. and its symptoms - like PAIN.... Um, sorry Lady Doctor, the pain experienced under the M.E. umbrella is inexplicable, but all too real. And the umbrella has a bunch of great big holes in it though which all kinds of bizarre, inexplicable symptoms fall.  That's okay. Very few physicians are M.E. literate because it's too much work to study, so they focus on the maladies they read about in medical school, maladies that are improvable, curable or terminal.  M.E. can be all of those adjectives or none of them.  Dr. Bev says I'll live to be 102 and from here on, it is going to be a riot!  I read Ray Kurzweil though, and his live-forever-downloading-consciousness-into-synthetic-bodies hypothesis.  Go Kurzweil! Transcendent Man (watch on YouTube) was a decent documentary, so..... maybe?

Also, I was going to pick up a used C-PAP, advertised on Kijiji.  So, People with C-PAP for sale, I sincerely apologize for being unable to get there! 


I'll be back when I'm not so nauseous....  

It has become unbearable again.  I track everything - at least I think I do - but then I find blank charts and graphs, days gone missing, I don't remember.  Usually I have to ask the people around me how I'm doing because I won't remember, especially in the throes of this kind of pain, the nausea, can barely see.  But now I'm alone.  Everyone has gone away.  No one wants to hang around This. Except for my awesome sisters.  But they are in Washington.  I am here. 

 I want to unzip myself and step out.  But I don't think there is anything left of "me".  My entire right side is all gimped up from the year at David's hoarding house.  But that kind of pain is real.... I mean it's "normal" pain.  A strained muscle, a sore shoulder from leaning on that side for a year.  Or a decade.  Or three decades.  I don't know anymore. I never know what day it is.  I miss appointments because I lost a whole month.  And somehow I keep breathing.  What's ironic is that it is my breathing that could be the whole problem.  I've always said, felt, that I'm not supposed to be here.  It's like living in another dimension where you can see what's going on in that other dimension where everyone seems to be living their lives, but you can't find a way in.  Or a way out.  Trapped inside my body.  That's dualistic. Am I my body?  Yes.  The gods are gone.  I could invent one, like most of the world has done.  But I'd still know better.  Sometimes I miss that feeling - I called it "Divine", knowing it wasn't some "God" with a capital "G", but Something, with a capital "S". It bothers me that I don't know what "It" is - also a capital "I". I dream that I can just fly around the universe, float through nebulae, alight on the makings of a tiny planet, then off to watch the Big Bang happen, also capital "B"s.  Everything is in quotation marks now.  The "Universe", capital "U", "Reality", "You", "Me", "The"...  I miss meditating and feeling the rush of the moment when you join that "Divine" even though I know it's just the pineal gland, my brain, neurons, trillions of synapses, electricity.  

Dr. Bev tells me she has some bad news and I immediately think she's going to tell me I'm a lost cause, "past the point of no return" as she wrote in her portion of my application for AISH.  But she writes things like that because she's had this, she still does, but she knows now how to fix it, she knows her own limits.  And she knows that this is the worst dis-ease, partly because of its invisibility, and partly because those of us who have it, are bed bound.  Nobody sees us.  But it's not that.  She's not sending me away because I'm the one patient out of two thousand who hasn't progressed, in fact, has gotten so much worse.  No, it's not that. In fact, to me this is good news - that my sleep study data are so bad that she and the doctor at RANA, the respiratory clinic here in Calgary, are trying to get me in on an emergency basis at the Foothills Hospital.  This is no emergency.  I'm 52 years old.  I should have died of crib death.  In 1963 it would have been an emergency. But I didn't.  I kept breathing and stopping and breathing and stopping.  I thought I'd overcome the survival instinct as my favorite friend once said.  But I guess not.  So I'll fight this one last time.  Dr. Bev tells me I'll need a Bi-PAP, which breathes for you, rather than the C-PAP - positive air pressure, which just blows air at your nostrils till you can't help but take a breath.  Am I dead?  Is this Deanna's ladder?  Is the intense pressure I feel just the earth pressed in around me because I've been dead and buried, because I did die of SIDS?  Or the train.  I need to write that story.  It would be a fun one to tell.  Ten years old, riding the bus home, hopping off the bus and waiting for the four o'clock train so I could wave at the man in the caboose.  But that day, when I heard the whistle, instead of raising my arms and waving them in the air as the man in the caboose pulled the whistle again, that day I panicked and ran.  I ran through the three rows of trees where I'd made paths, built forts, hung upside down from tree branches, I ran all the way to the house, shaking.  I ran up the narrow winding staircase and laid on my bed.  I didn't know how to tell my mother.  I didn't know what to tell her because I didn't know what was wrong, just that it was wrong.  So I told her my stomach hurt.  That was the beginning.  Forty-two years later I still don't know how to describe it, other than a bombardment of horrible, endless, physical sensation.  So I like to think I died that day, that I was hit by the train and ever since, I've been walking around, lying around, dazed, confused, still feeling the impact of the train.  Sometimes I have to think that way.  It's romantic.  Right?

I feel like a jack hammer right now, the vibrations jolting this biologic machine that I am.  I'll be back.  I have to knock myself out for awhile.  If I don't, I know I'll just swallow all these pills, every last one of them and then go for a walk, lie down and go to sleep forever.  I've heard there's a grizzly around.  It killed the neighbor's watch donkey.  And cougars, always those beautiful, black, giant cats.  Coyotes too. And when they've had their fill of me, the ravens, hawks, carnivorous birds, can finish me off.  One day someone might stumble over my skull, but not for a long time. So, I need to knock myself out now.  I'll feel better when I wake.... I think, I hope....  

Signing off for now.... 

Pain has an element of Blank...

Pain has an element of blank -
It cannot recollect 
when it began or if there were
a time when it was not.

It has no future, but itself.
Its infinite realm contains
its past, enlightenment to perceive
New Periods of Pain.


                        ~ Emily Dickinson (from "Bartleby.com" - I'm sure I'll be writing about my friend, Bartleby soon too.  He's just awesome!)




June 12 2016

I keep running us out of internet usage out here so I haven't been able to post. I had my "first" (first, this time, 2016, and final attempt) session with Dr. Bev. My own gp in Edmonton didn't bother to tell me I had apnea. I had to ask her for the requisition for the sleep study.  I also had the sense to tell the sleep specialist to send any data to Dr. Bev, who says it's one of the worst cases she's seen, especially since I'm not big and I don't snore - and I also stop breathing while I'm awake.  I just forget.  Once in awhile I'll realize at the bottom of an exhalation that forgot to inhale too, and probably should before I pass out.  

She also has me checking my blood sugar levels every 15 minutes for 3 or 4 hours, food and no food.  I can't see a pattern yet, but she will.  Why, for instance, did I have a glucose level of 11.9 in the morning before eating?  And why, after eating, did it go down to 6.9?  This dis-ease isn't making sense to me yet.  It will.  If only I had stuck with it when I first saw her in 1998 at age 34! Dammit!  But I had a husband and three kids to care for, a farm, and a Bed & Breakfast to keep in business.  I thought my husband was supportive, only because he patted me on the bottom a lot and said "nice butt!" or "Mmmm... I love you!" Or he'd grab my breasts and say the "mmmm I LOVE YOU!" thing.  

I always went with him to his medical appointments for his diabetes.  He never went with me.  He doesn't know who Dr. Bev is.  Near the end, I went with him to Edmonton (a traumatic event for me, being in a moving vehicle for more than six hours in one day).  There were about ten people there, all diabetic who were supposedly the sickest, needing to go on the pump to gain better control.  They were sitting around the table having coffee and Digestives, talking about work, family, and life with diabetes, while I was lying on the floor, in pain, desperate for sleep. But I hurt too much to sleep. Also, it isn't socially acceptable to lie on the floor, unless you're a toddler. But I was 39 then.  I still lie on floors when there's nowhere else to lie down.  I'm 52 now.  And that much worse. 

I guess my point is, I had no support whatsoever.  In fact, I had lots of opposition from my in-laws.  Julie especially, felt it her duty to let me know one morning, after I'd lain on the bathroom floor all night trying not to vomit, and was sitting at my beautiful, brightly-toned piano (playing HYMNS for pete'ssake!) that they were very aware that I had anorexia and they were praying for me.  Yeh, thanks, Julie.  Actually, among many other things, I have leaky gut, so I'm basically allergic to everything and food makes me feel like I've been poisoned, because basically, I have been poisoned with unrecognizable particles of food roaming about outside the intestinal walls after seeping through the "leaks" of a hyper-permeable gut. So my immune system is going after all those particles, leaving me painfully exhausted, feeling like I'm allergic to my own skin.  How I wish I could just unzip myself - all of me - and step out.  My sister Meryl offered to carry my head around when I get the rest of my body amputated.  She would put me up high where I could watch her in her "Ms. Mechanic" shop.  But eventually it would be in my head anyway, as it is now.  It feels like my face is being pulled, torn off, very slowly.  My eyes burn. Apparently, even breathing is too much of a chore now.  BUT, what if the C-PAP works.  I got Ched on one because I would lie there beside him, wide awake, and count the seconds between breaths.  But Ched has a rather large paunch and he snores.  I tried out his C-PAP once, just for an afternoon nap, and couldn't believe how awake and clear I felt after that nap!  Yet... don't forget... we are "fearfully and wonderfully made", and if you don't want to believe in the gods anymore, and prefer the intelligent design myth... sorry, none of this dis-ease is intelligent in any way.

I looked like this, so people were nicer to me.  As long as they didn't find out I couldn't do anything but lie around.  (Sorry, Baba, I don't know who would have cut you out of this shot). And, I had all my teeth then too.  Sjogren's dries you up everywhere, so your teeth crack and fall out because the enzymes in your saliva aren't there to protect them.  It dries up all your visceral organs so they shrivel up and HURT!  "Dries you up" sounds kind of innocuous, right?  Uh uh.... If I don't keep gum or mints in my mouth 24/7, my my tongue adheres - or rather - glues itself to the palate and I have to sip water slowly to unlock it.  That too doesn't sound like a big deal, but it is.  Ugh, it really is!  When I think of a means to describe it, I will. Lupus wrecks your skin and any other organs it affects. I think mine is confined to my skin - ugly rashes on my arms and legs.  The typical "butterfly" rash appeared when I was 26.  My eldest son started getting sick when he was 26.  Benji is in the genius caliber, so when his brain started going mushy, that was, and is, simply unacceptable.  He has found ways to manage it better than I have though.  My second son has never been well, and my heart hurts for him.  My daughter might be okay because she has her dad's genes.  The boys' dad just had a kidney transplant, but we're skeptical. Were his kidneys really failing and now he feels better after the transplant?  Or, is it the cocktail of immune suppressant drugs keeping the inflammation at bay?  Were the four of us exposed to something?  Or, do I really have Lyme, which can be transmitted in utero. And I'm not sure if it has ever been proven that Lyme is also sexually transmitted. I did pull a tick from under my skin at age 17.  It had been living there for several days with me picking at it thinking it was a pimple... with legs. And, if this is Lyme, then that tick got married, had babies who set up an entire colony, but the spirochetes form themselves into cysts where they can't be tracked. Sneaky little bastards!  I would read up a lot more on Lyme disease if my brain worked. But it doesn't.

                   I need sleeeeeep!      Over     and     out.... zzzzzzzzzzzzz