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