December 12, 2016 Vlogs I haven't been able to post till now....

October 15???? How did that happen??! Conditions for Getting Better

Just this:

- No stairs or hills or driving
- No standing or sitting upright for more than a couple of minutes
   - carry a camping stool for waiting in lines ( if you're well enough to be in line somewhere...)
- 3 bites/hour - put 3 bites into baggies and into the fridge because most of the time you're going to be too sick and just grab what's there, or skip food altogether. 4 of those baggies need to be meat
- 10 to 12 hours' sleep every night and no animal bed partners
- comfortable bed, comfortable couch.  Physical comfort level should be very good to excellent 100% of the time.
- warmth, sleep in heating blanket at night. During the day, lie on a heating blanket so the heat goes directly into your spine
- no sugar, no grains, no gluten
- clean house, chemical free, scent free... did I mentio NO STAIRS?!?!!!

-I'll remember more and add.

Seriously, if you don't have every single condition for your recovery, you just won't recover, ever.

Can't keep going.... something's got to give!

I can't, just can't keep going like this.  Eventually I will swallow several lethal doses of everything I've been saving for moments like I've been having every single moment of the past - I never know how many to say - years - decades, about three plus.  Can't keep going.  Something has to give. So I stop eating.  All I know is that I don't feel as bad when I don't eat.  It's been this way for nearly 40 years.  After I left home at 17, I just got into the habit of eating a small meal once a day, or more like a nibble, once a day.  I didn't get so tired.  I could function better, not like everyone else, but I could stay under the radar at least, and pass as relatively normal.  So, as much as I know eating real food is the key to getting well, I won't live to get well if the agony is this profound.  So today I ate half an apple and half a piece of sprouted bread toast with peanut butter.  I could have, should have, skipped the toast.  

Felt horrible waking up, like my brain was full of mould, aching everywhere, and dammit, my heating blanket is dead.  But once I finally flopped myself out of bed and into the bathtub, I was ready to find that ENORMOUS little spider that I'd seen earlier in the shadows.  The bedding came off, the mattress swept, the

cracks and crevices in the boards and storage space under the mattress vacuumed, everything into the washing machine, bucket of warm water and everything in my room wiped down..... NO SPIDER!!!!  Just a ton of dog hair, dog food, dog toys, and a dog collar, and also the little white and brown chihuahua waiting, confused, worried for his space on the bed to get put back together.  It was suggested on Facebook that maybe the "spider" was just a cluster of dog hair creepily floating by in the shadows of the early morning.  I acquiesed to the suggestion, knowing very well there was a spider! A big one! (biggish, you know, like, not small, not tiny, but too big to be creeping around my space)!

I took half a Vyvanse about half hour before starting the arachnid search.  And without food, I was able to keep going for five hours before I realized how much time had gone by and I hadn't been desperate to knock myself out!  And I was still going!  Yes, my back hurt, but you must understand this kind of desperation, the agony, the profuse, and diffuse pain, normally wracking my entire body.  And today it wasn't there, just the "normal" back pain - the back pain about which, at age 24 I remember sighing to myself, "well, I guess I finally, (FINALLY, at age 24!) have to admit I have a back problem.  I didn't eat today. That's all.  I am so allergic to food - Leaky Gut Syndrome - that fasting for a month actually gives me energy!  They say you must be super spiritually charged to be an "autotroph" or whatever you want to call those people who say they get their nourishment solely from breathing and a little water.  Hey, maybe I am.  Seriously.  Maybe.  Maybe not too...  I mean, I try not to use that suspicious word, "spiritual" - doesn't it sound sort of arrogant?  Or in my language, "Poofy"?

It is 12:22 a.m. and I have to force myself to stop. That's how non-bad I feel!  I can't upload the videos waiting in queue because I'll run us out of internet usage again.  And I don't go to Tim Horton's for their free wifi because I don't do caffeine or doughnuts or sit, although I may give it a trial whirl.  Or something.

July 25 vlog

Dr. Bev even said I looked terrible.  That infection set me back about a decade. I have much to learn, to connect the dots.  Wrap my legs in the heated blanket instead of hydromorphone.  Eat.  Even cookies.  Decades of malnutrition takes its toll.  Don't be me.  But how to eat when everything feels like poison? When every bite adds to the pain....?

Vlog - Love one another... it's easier than not loving

The subject matter in these videos is extremely personal and sensitive, so please watch/listen/read with respect.  The intent in posting these videos and reading just one text, and not even a particularly cruel one, is to implore all parents to treat one another with dignity and respect, regardless of whatever feelings or opinions you have about one another.  Think of the child/children, to whom you both gave life - that's kind of a big deal, the biggest and best, so treat it as such. 
 
 

I don't have the physical stamina or mental focus to splice these videos together, or set up proper lighting or add music to set the mood... so you get to watch separate videos, as thoughts come to me.  As I begin to rehabilitate from M.E., you'll know, because sitting here will get easier, videos, templates, designs, etc, will be much more creative.  But until then, this is what you get.  Deal with it.

I am not putting my son on a pedestal here.  We all have our struggles.  But I've witnessed the bizarre behavior of this person.  For instance, when I went to visit them the first time, excited, thrilled, happy to meet her, I walked in to see her following Hamish around the apartment, yelling at him, "YOU JUST WANT TO FUCK YOUR MOM!"  Astounded, shocked and embarrassed for the both of them, I walked back out and slept in my car.  Hamish told me later that the accusations went both ways - apparently I wanted to do the same to my own son.  I should also clarify that Hamish doesn't have "former" friends.  His friends from childhood are still his friends, along with the friends he's made along the way.  She says his friends and family are his "cheering squad [and] are all idiots." I don't know where her insecurity comes from.  Like I say, I would love to be able to just hold her and love her, not just because she needs it, but because I did, and do, love her!  I would try to find out where the hatred comes from, and try, gently, to pull it out of her, help her replace it with kindness, love, honesty and respect.  How horrible it would be to have to live with such a negative emotion your entire life, to live with hatred, the desire to be cruel and with invented stories/lies, especially as a mother and grown adult in her mid 30s.  If you ever watch this,  "V", I really do love you!  Just accept it.  It's free, beautiful, and necessary.  No one can live without love, and I mean real, unconditional love!  Try it out - just accept it.  You don't even need to offer the same in return.  True love is freely given.  What harm can it do to just take it, try it on, see how it fits/feels?  It's already yours!

I will probably take this post down after a week or so.  But while it's here, think about it, especially if it applies to you.  I didn't read the really horrible emails/texts. This one was mild.  That's why I chose it.  We simply cannot and should not judge anyone, because we don't know where that person has been,  or has had to come through to get where he/she is today.  We're here to be kind and to love one another!  

marriage

"The doors open both ways",

you always said.

And so I used the door

to come in

cook for you 

wash your dirty woolen socks

powder your expanding bald patch

giggle at your silly attempts

to be serious

and

maintain our sacred spaces.

Marriage

and the family

we grew

has been my freedom

from having to decide

who to love.

Boys of Summer

Sun burnishing the earth

its brilliance

saturating the air

with sultry stillness

except for the crickets in chorus.

Pockets of breathable air

where you couldn't find them

until you were right inside.

Even the flies had

fled from the fever.

Distant fence lines
shimmering through waves
snaking across the prairies.
Power and telephone lines
buzzing tales of 
all the neighbors' secrets.

You and I tracking gophers
and other unsuspecting rodents
squirting water down their front doors
thinking weren't we smart.
Poking through the reeds
for frogs and other
hapless slimy creatures.

Stripped to our shorts

plunging through murky surface   

algae and water beetles

scurrying to escape                      

our voices muffled

by the muzzle of heat.

Distant rumblings

lead sky against

tumultuous golden horizon.

A splat of mucky weed smacks

against my face

and subsequent chortles from

across the pond

instigating war!

Counting seconds between

bolts and blasts

lightening and thunder

until they became simultaneous and

rain beat upon us

from above

and below

a flash across the expanse              
then 
your arms jolting upwards
out of the water
like fence posts
and for a moment
you walked on water

like Jesus.

Then you stepped out of your body

and my tongue froze to my mind and never uttered a word again.

When my husband still loved me, children were young, and they all still thought I was a sort of okay mom.....

Yes, they were pretty sweet babes once - all four of them.  I think they despise me for being an "other"..... so it goes.  Happy Mother's Day. Mom!  Every picture of my little family has that tired, worn-out-looking girl/woman in it though. I don't know who she is or why she appears like an apparition in all of my photos!  Kids are gone and have their own offspring.... but she's still there... just more solitary, holding shadows of her babes.

  

From the name game - "Deanna Bo-bana"...

(in case you can't figure this out.....)


Deer Mom
We Love You 
Very Much. U Make R
Home A Very Special Place 2 Bee. 

Heart,
DAViD OSWALD, HamiSh, Benji, ABiGAiL

Hamish

My lovely second born, came to me
in the silent stillness of a morning, quiet, no lights, no monitors, in an empty hallway.... he knew me.
He understood everything.  He was born
knowing because I sang to him, played to
him. He even arrived with my memories intact. I was so young and so little from
being so sick.  But then he came to me, he never cried, even when those sores were all over
his tiny body and I fixed him up without a single fuss from him.  I loved that boy! He made me
laugh, smile, cry with joy, cry because I knew life would not be easy for one so passionate, so knowing, so real.  This boy, this man.
I was never well enough to teach him music
so he taught himself.

I beg him to believe
in himself.  He is so strong, so beautiful, and has
oh, so much to give the entire world... yet his own young son is enough for him.  Knovah, you are not only enough, you are everything to him, my Hamie.  This man, your daddy, was once my little boy. Love him. Know him.  Believe him.  Always.  He is always right, not in an authoritarian way, but in the quiet, lovely, painless way he was born to me, the mother who happened to give birth to him, and then loved him with all her inner, quiet might.

These beautiful baby boys began long ago, not with me, but with the seed of their fathers.  I only gave birth to one, but loved them all.

So, World, just listen.... Do you hear what I have always heard???

And he has to walk away from me to walk beside you

Possession

Not better.  Worse.  What am I not getting???  Dr. Bev has reserved a quiet room with comfy couches where I can sleep for a couple of hours before our 1 - 2 hour session.  But then this chronic low grade UTI turned acute and has possibly gone into my kidneys.  No amount of morphine is decreasing the leg and abdominal pain.  So once again, even though just a week ago or so, I was off my meds, I'm knocking myself out with sleep-in-a-pill.  That's all that helps. And, it was the long weekend.  No walk-in clinics out here, and too far to drive into Calgary.  So here I lay myself to, er, not sleep, moaning my favorite mantra, "ohmygodohmygodohmygodohmygodohmygodohmygod......".  It gives me something to do.  So.... here comes an onslaught of more old poetry.....

possession

I could open up your skin     peel it from the bones     like magic it would fall away     and I would cut away the flesh     or burn it off     and there would be all your bones     stock and sturdy     and I would stand above you     with a stick attached to strings     attached to each bone     and I could make you dance or kneel before me     or lie prostrate on holy ground     or run from me   but I would always be there with the stick and strings     to reel you back in     and I could take your bones apart     and reconstruct them to resemble a Neanderthal     or infant reptile     and I could make the whole world believe I'd dug you up from beneath a coal-smeared rock near Drumheller     and I could even put your bones in a box and bury them behind a wall     then patch it up with bricks and mortar     and monalisa posters     OR     I could just leave you alone there     where you sit across from me     and I could watch you manipulate your own strings     or construct your own primordial ancestry     that nobody but me would believe     and I could follow you into the murmuring fields     and watch you open up your arms and rise into the air     and fly away  
then back to me     that's what I could do

Misfit

myriad voices

inside the great crystal ball

before me, cannot penetrate the

surface. Distorted faces pressed grotesque

against a concave pane, groping 

fingers, death-white with 

constant despair. 

Either let them

out or let

me in.

About the Pain....

I wish to say it

about the pain

because that is all                                           

I am made of.

They were like the Imp's                                   
shattered looking glass
which made all good things
appear evil.

I have traveled to places                                      

they can't imagine
to plead for its excision
but there it remains
knifing deeper
into who I am -
  
        - who I was -
                                               




I wish to pull the words

from these unspoken glances
we exchange.
I wish to say, "Say it!"
but can't expect the stillborn
to give up their wisdom.

                                                 

                                           Can you hear it?                                         
                                           Can you breathe it?  



It hurts it hurts it hurts!
But there are no words
no metaphors
for what is unrecognized
and inarticulate.



                                          Still, I wish to say it
                                          about the pain
                                          for its own sake
                                          to give it power
                                          because sometimes pain
                                          is a beautiful thing
                                          when it's all you've got.                                            

Momma

(Well.... no, not me, not yet anyway.... So, in the meantime, you're going to get a bunch of old poetry, and a photo of my momma the moment she left)

Miss you, Momma, I love you, more, I think, than you ever knew...
and despite, or more probably, because, of what you did to me.  It just doesn't matter.

Apology seeps through her cracks

of which there are many.

At 75* it gets harder to plug 

the holes.

Her protective scales

no longer serve to detract

or retract.

She sheds them everywhere.

She's mortified of course,

unaware of the secret glory

that illuminates her unlaced

nakedness.

Soon she will be the Empress

proudly modeling her new clothes.

And I shall be there to applaud!

*and I was, 16 years later,                                                              

as we watched and waited, 

a mist came out of her side 

and wafted upward 

then dispersed....

energy neither created nor destroyed, so...

.....I can't help but cry when I hear

"Drops of Jupiter" now.

Thank you, Pat Monahan,

for writing that song 

   for your own mother

"Honesty" (???!) Down the Drain, Baby!

It doesn't kill you.... it kills who you are

                                                                                            

                    

I should never have allowed myself to be on my feet, even with a cane - using a cane or crutches just hurts your arms and shoulders, and doesn't really take the pressure off your legs and back.  "Carry a camping stool!" says Dr. Bev.   

I joined a Facebook group here in Bragg Creek, asking for help, not expecting any responses.  So I was astounded to find a couple dozen offers waiting for me when I got home.  Let's see if they're serious.... usually when I ask for help, everyone disappears in a hurry and never comes back....

I need to talk more about the consequences and aftermath of the rape.... back to the "Rape is Rape is Rape: A Love Story".... but I still have much processing to do.  If anyone wants to add something, I would love to have guest posts. Leave me more comments!  Poetry, personal stories, art, music, whatever is on your mind.... tastefully and truthfully.

UPDATE!  Yes!  Thank you to Lori for picking up my sleep study kit and returning it to the Foothills Hospital today - despite having the big dogs jump up on her!   And more recently, thanks Marina for picking up and dropping off my prescriptions, despite your very recent medical/health stuff.  You gals are awesome!  

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