whym's Blog

Shit.  So I suddenly find myself with a surly pre teen on my hands.  I swear it was just yesterday I could get him to do something for a *star* on a chart and now he's openly challenging me, mumbling things under his breath when I ask him to do something, glaring at me....GLARING at me?!  The saucy little bugger.  He may get it easy because he's disabled but no kid of mine is going to cut those glances at anyone...unless he's being bullied.  Then, he can glare and tell and fight back all he likes.  Mind you, there's no way to define the line for someone who can't sense any line in any social situation...so it's complicated.  

Who the fuck made parenting so complicated?!  The moment the child is able to actually tell me what he is thinking, he shuts his trap and refuses to speak to me.  

(Am I doing this right?)

This pain is fucking insane.  
I am medicated well for the things I have happening inside my very disgruntled body and yet...ouch.  I'm still in pain. I've been staring at the numbers that flip by on my clock but it seems like they keep stopping.  There is no way a day should ever take this long to pass.  

I need a hug.  I want my mom.  The trouble with my mom is that she's dead...long gone and rotted away in her coffin.  (sorry ... I know).  When I was little I would dream of digging down into the earth to try to find my mom.  I would wake up screaming, thinking I was stuck in an underground tunnel with no air...panicking.  When I got older I would fantasize about finding her grave and then I'd melt myself through the soil and into her coffin.  I'd collect her dusty bones in my arms and rest my head on her rib cage....and I would cry.  Tell her the things I wished I could have told her in person.  

And if that's not the strangest thing you've read today, you'd doing well on EP.  

I'm trying to 'wear' my pain, embrace it, ignore it, push through it...but it doesn't seem to be ending.  I'm all for the rah rah rah YOU CAN DO IT attitude except what happens when you get to the top of that hill only to find out that there is nothing but hill as far as your eyes can see.  Really...the only think you can do is keep going or stand still.  Neither appeals to me much today.  

Alright.  I've had my break.  Back to work so I don't lose my job.  (if only I could concentrate around this bullshit.  Looking forward to learning a new method of dealing with pain.  Spoke with someone here who has some info on self hypnosis.  It can't hurt to try...what's the worst that can happen?  (don't answer that).  

G 

I swear I can hear it inside me...there's a rolling thunder in there just before the pain swells.  It never *quite* goes away, the pain...well, untrue.  Sometimes parts of it go...the nerve pain is calm this afternoon but I can feel it in my bones.  The individual ribs, my collar bones, sternum, shoulders back, neck... 

I am fully medicated and still feeling this way.  I have a headache.  It seems clinically impossible that I could have a headache with this amount of pain killer in me, but, it's true.  I will actually have to take some advil on top of my medley of pain killers to find some relief.  

This is stupid and frustrating. I wish I could find a way to ignore my entire torso for a day or two.  :S 

Wow, it took me a full week to get the pain back in check, after a mishap that involved missing a dose of the muscle relaxant.  I can breathe this morning without as much pain...I only cringe when I move my entire torso or bend at the waist.  My head isn't pounding, for once, and I haven't been sick in a few days now.  I think I'm shifting back into balance, thank god.  

I'm sitting at my desk kind of stoned on my meds. .. waiting for the day to be over.  lol

Happy Friday. 

There is just nowhere to put this pain.  It's wild, the way it takes over my head.  I am concentrating.  Hard.  Trying to stay on task but I need to get up and move every few minutes to be able to stand the pain.  

I'm scared.  What the hell am I going to do if this med stops working?  I hate to be so dependent on it...I mean I'm glad it works and all but... :S  I've been on a ridiculous number of drugs in many combinations to help control my pain.  The trouble is that it's getting so much worse so quickly and missing two doses, apparently, leaves me with zero relief the next day.

I have so much more I wanted to do with this body of mine.  I try not to worry too much about the future, but in this, I can't help but wonder what life will be like when I'm 50 :(  

Ok.  Complaining over.  For now.  

My dreams were so cruel to me last night.  I had dreams of my childhood dying in my arms.  I dreamed that my childhood best friend was dying of cancer.  I had to go back to my family's home to see her, in fact, she was resting in my childhood bed.  I lay with her as she died, stroking her hair, kissing her cheeks and telling her how much I loved her.  She died while I held her and I sobbed as I let her go.  I had to make the rounds to tell everyone the news and all I could say was "she's gone" over and over again.  Each time brought a swell of pain and loss.  

I've been awake for hours now and I still can't shake the dream.  

Today I feel a huge sense of need to move this emotion though me.  I'm not functioning property...can't focus, I feel like I'm clogged somehow and I know what it is.  I have a real, desperate need to take care of someone.  No one will ever let me do that...they don't trust enough usually, having been burned by someone else before.  

D doesn't want my love or nurturing.  He likes to take care of himself and takes pride in not needing anyone to take care of him.  

Colt has an actual aversion to being touched, cuddled, or outright loved.  He doesn't want me fawning over him.  

My current supervisors at work are all extremely independent and require very little from me in the way of planning or technical support...can't lose myself in filling their needs.  

The relationship where I used to put all that love ended in a brutal, angry way.  

That's all the people who love me.  I'm not sure I want to hand out love like party favours to strangers.....  Where do I put it all?  It feels too enormous to waste.  

I work in a hospital.  I work for FIVE physicians....they would likely have caught on were I a junkie.  You know, it makes me furious, that he decided to go there with me.  I was a street kid from age 15-19 and out there I managed to stay away from most drugs.  I am proud to say I've never done anything heavier than weed at the absolute worst, LSD.   I've never snorted anything and I have never, on any occasion, injected myself with anything narcotic or otherwise.  I'm PROUD of what I accomplished and he wants to tear that all down.  

He thought I was a whore too...fucking every guy I could as fast as I could get through them.  

Why did fall for this guy?  He's never thought much better than this of me anyway.  I guess I was drawn to his abuse ... he reminds me so much of others in my past.  He's as cruel as my father was.  

*angry* that I wasted so much of myself on such an undeserving soul.  Never again.  :(  

Oh goodness I had a lovely sleep last night.  I almost never do, thanks to chronic pain and constant nightmares (mostly about the pain).  

I went to see my doctor yesterday and she decided to try a muscle relaxant, rather than heaping on another pain medication.  I took two last night and just about fell into a coma, I slept so well.  I didn't even make it to bed, didn't have blankets or pillows...but still rested so peacefully.  I don't remember a single dream.  I always, always remember.  My brain feels refreshed for the first time in years.  

My loser ex dumped me without a word, just took off and left me two weeks before a surgical consultation for the pain so I've been stressed, worried..alone...sad.  After a good night's sleep and watching him make a fool of himself on the internet, however, I'm feeling a gazillion times better.  

Yay for me.  I feel like I'm human again.  :D  

Feels like it's just me left here.  I feel like the mall cleared out, the city evacuated, and it's just me now, stuck in the mud, wondering how long it might take to die of exposure.  Funny thing is I just don't care.  
Things are wrong.  They are wrong in my body and wrong in my brain - nothing fits anymore.  There are no answers or fixes or cures.  There is no way to get inside myself and untangle the tangles, untie the knots...there doesn't even seem to be a purpose behind it all anyway.  If I can just hold on a while....well, I don't know what will happen.  So.  Whatever.  

I'm sad.  I'm sad for my little boy who can't protect himself in the world.  I'm sad because he is lonely inside his little shell and he can't let me in, even if I beg.  He speaks to me in short sentences that describe nothing but his most recent need or obsession and tries, always, to tell me what he thinks I want to hear.  "I love school!" he says to me while I know, somewhere in there, he's trying to tell me he's scared.  I'll say to him, "Did you do anything fun today?" and he'll say "No, mom, I was good all day, no hitting no talking back".  I try to correct him, "No honey, I know you were good!  Did you have some fun today?"  "yep, I was a good boy!"  :S  I'll try a different angle and ask about his classes but he can't or won't remember.  I'll feed bits of info in to see if I can get his memory going...nothing but frustration.   Now when I ask him about his day he'll immediately say "Okay, but I'm only telling you ONE thing." and that will be that.  

I don't know how his first day of grade three was.  I'll never know.  I won't know how today goes unless the teacher tells me because no one else does.  

Last year he was being picked on by a kid in his class, calling him a retard and telling him he didn't belong, that he should go to a school for retarded kids.  My boy didn't tell on the kid, didn't fight back or yell, he didn't even come home and tell us someone was being mean.  He didn't understand the exchange and just kept waiting in line for his bus, not worried about the insult.  I heard it from his teacher, not from him.  I don't know how to protect him from things I'm not aware of.  
It's scaring the hell out of me.  

I'm scared because there's something wrong with me and no one wants to figure it out.  It's not interesting or compelling and no one will get published so, mah, end of the line for me. I'm sick and tired of feeling so terrible and the meds I'm on to help with it all generally just make me feel worse in a different way.  One helps the pain but makes me so tired I can barely stay awake while at work, the other upsets my stomach so much I can only keep down 1/3 meals.  No meds?  That leaves me sobbing on the kitchen floor begging for someone to just fucking kill me.  

I am depressed.  Lonely.  Feeling helpless when it comes to my son and to myself.  I'm not sure what to do now because there is no clear path...just more confusion and sadness.  I want to just stop, sit down where I stand, and close my eyes.  Maybe I can sit still enough to trick the world into thinking I'm gone.  

Annoyeddd.  So, found a friend on here...married guy, happily married with a whole bunch of kids.  Seemed kind, sweet, compassionate, caring..stuck to me like glue for the first few weeks we knew each other, shared all of his thoughts.  He told me he loved me.  I smiled and thanked him and politely told him he was full of crap, like I do when anyone who barely knows me tells me that.  He swore, "Noooo Grainne, you're WRONG about me.  I'm NOT like other people, I'm SO different..." and blah blah blahhhhhh.  I relaxed with him a little, shared some stuff, he truly didn't seem to be simply hanging out in the hopes that I might accidentally slip up and end up fucking him one day....however....he suddenly decided that he couldn't let his wife know he and I were friends.  

Anyone else smell something funny?  Yeah.  

So anyway, I balked at that a little bit, especially when he told me that it would "Destroy his marriage" if she knew, but he still seemed fairly genuine and didn't react badly when I told him that I wasn't interested sexually.  He sent me email full of "I love you's" and coddled and prodded me...telling me all about how I deserved more than the way my ex treated me, deserved attention and respect, deserved to be happy.  Friends could do that for each other too, I'd see, he'd tell me, what a great friend he turned out to be.  

Okay.  I'm not a noob at this.  I get it...lessons have been well learned; I KNEW this dude was not going to end up being the best friend I've ever known, but hell, I was lonely, he was kind...didn't seem to be much of a reason not to give it a shot.  I figured once he settled down he'd be able to tell his wife and things would be fine.  However, something else must have caught his eye along the way because he went from visiting ten times daily to vanishing with a single 24 turnaround time.  

I LOVE you Grainne.  To.. Hmmmm, wasn't I supposed to check my email for something...?  in a day.  Here is my question:

WHY BOTHER WITH THE BULLSHIT?  Really?!  I mean, my feelings are barely even hurt here and I have a great sense of control over my heart these days so he wasn't troublesome to lose, but god, why go through all of that for nothing?  I mean, he didn't even ask me for a dirty picture.  

*sigh*  People.  Quit trying to convince me you love me.  It doesn't do anyone any good, especially when you don't.  

July 16

This weekend I thought I'd be careful and only took on one cleaning project.  Wanted to be sure I didn't hurt myself like I have been doing, too much physical activity seems to make things almost intolerable for my body these days.  I decided to clean the kitchen, all out.  I DIDN'T move the fridge or stove, I didn't even move the kitchen table - had D help me out there, and all I did was assist in cleaning the floors, walls behind the appliances,  and did dishes.  It was a deep cleaning, for sure, but I didn't do it alone, nor did I over extend myself by moving heavy things.  I woke on Sunday morning feeling like I'd been run over by a truck and, as per norm, it's worse today.  

Body scan:  Feet are ok...itchy mosquito bites from last week are healing nicely.  My ankle joints hurt, as do my knees.  Hips are ok, lower back is ok (yay!).  My upper back, shoulders, collar bone and ribs are on fire every time I move or breathe, my neck head, arms and wrists feel like they're dead on the outside and nothing but pain on the inside.  My face feels swollen and is sore, jaw aching, headache blazing.  Brain is foggy and unfocused.  I can barely turn my head from side to side and after a 10 hour sleep (mostly dreams) I'm exhausted.  I feel like I haven't slept in days.  Oh...and my right thigh is bruised from hip to knee...dunno why.  Hurts.  

Happy Monday.  :S  

This really hurt me today.  I don't know why, because I think about it all the time...but today...talking about it made me cry.  I had the following (short) conversation with a friend over IM.  We're talking about my autistic soon to be eight year old little boy.  (love of my life/angel in disguise).

m h says:
what has my little buddy been doing for the summer?

Grainne says:
bitching about having to go outside. lol

m h says:
he really doesn like to be outside does he

Grainne says:
nope. too much stimulation in part, the other part is just laziness

m h says:
i never stayed inside, even when it rained

Grainne says:
he doesn't play with other kids or anything though, doesn't ride a bike...skateboard...(motor control isn't great)
no fun just standing around outside I guess.
it's not like he can leave the property and go exploring. he'd not find his way home right?  being disabled makes him pretty attached to safety

m h says:
i know, but he like to go out with you doesnt he? and d?

Grainne says:
no he hates it. we drag him, even to the park.

m h says:
so he just plays games and wathces tv?

Grainne says:
hates crowded spaces...so water parks and stuff are no fun
can't go to amusement parks...no team sports it's hard. hard for d too because he wants so much to go hang out with colt...play hockey

yeah and he plays with his toys, quietly on his own. we don't have cable to try to deter the tv watching.

m h says:
i guess a home body like his mom

Grainne says:
yeah. it's kind of like having a baby, rather than a little boy. just can't ever be left. hurts to watch, but he doesn't really know any different.

m h says:
i guess, if he's content thats all that matters

Grainne says:
that's what we strive for. nothing is as we expect it to be with him, but we try to roll with it. it's the best we can do for him

I went back to my doctor today to chase down the outstanding referrals (neurology and pain management, plus the lumbar puncture, but I think that will end up being done with neurology anyway).  She said she'd follow up.  I didn't get the scrips upped again, even though I had considered it.  I want to be in NO pain, but I'm afraid that increasing the meds will only leave me less able to function mentally, even if the physical is better.  

The pain never really went away after this last flare up, which is annoying.  Most often it cycles through and comes down a great deal at some point but it's not happening this time.  For this reason, I'm kind of glad I'm on a lesser dose of pain killers because I can still track the symptoms with some accuracy.  

I've pretty much stopped sleeping at night and I'm really tired, but there's enough stress going on to keep me awake through the days.  If I could just get rid of this damn headache, I'd be that much better off.  A steady stream of advil along with the percocet seems to nibble at the edges of it.  I'm not sure which issue causes the headaches so I'm never sure how to treat them.  A cold pack on the back of my neck seems to help most so I'm living with one strapped to me most of the time.  Thank god I work in a hospital and these things are readily available to me.  

Anyway, so, no news.  Blood work was all fine again.  Just sitting and waiting for my appointments to come through.  

I was in the car on the weekend, in the passenger seat with my legs stretched out, when my entire left thigh went numb.  Well, not 'numb' exactly because that implies something like pins and needles to me, it more went *dead*  The only way I can describe it in a sensation is dead.  I could feel my calf, my knee, deadness, my hip.  I touched it with my hand and it didn't feel like it belonged to me...like I was touching someone else's leg, which TOTALLY freaked me out.  I didn't say anything to D and C, who were in the car with me because I didn't know what to say.  I just ignored it and by the time I got up the next day I could feel sensation returning.  It didn't impede my ability to ambulate (because I guess you don't really use touch sensors in you thigh for much - more stability, I suppose).  There were no odd marks or bruises, no raised veins, so swelling, no pain.... Just...zombie leg for a day.  

The pain is creeping back up on me as we're back into the sweltering 40 degree weather with that humidity that makes it nearly impossible to breathe.  There's a touch less stress for me right now, however, so the flare up isn't as bad as the last one.  Well, that and my doc damn near tripled my meds.  I figured I'd be high as a kite by now, but strangely I'm not.  My doc says that when you take these drugs for pain, you tend not to get a buzz off them, which I'm pleased to see is true.  Not that I'm not up for a nice, lazy, buzzed out afternoon, but when you work in a hospital and all of your bosses are doctors it's not a great idea to show up to work flyin.  

So.  Whatever it is, I'm okay for now.  

It's bedtime but I'll never sleep yet. I can't lie down without making my head feel like its about to explode. This is simply ridiculous. I've taken three Percs, am wearing two durogesic patches and have even had a few beer along with two Tylenol and two Advil and my head still hurts. Is that even physically possible? Apparently so.

In other news, my neck and shoulders are also killing me, however, its only when I move them. If I sit absolutely still I can almost pretend it away.

She's been in contact with the MS clinic in the hospital I work in.  There are only two neurologists that specialize in MS so the wait is going to be a little longer than I'd hoped.  She pushed for my MRI appointment and got one for the end of of August, which is actually pretty good, all things considered.  It's at 8 at night so the machine will be running on time for sure....they tend to try to squeeze patients in between emergencies so I'm also going on the wait list.  Working here, I can run down at any time (actually a 15 min drive to another campus but all good).  If I'm willing to go spend the night in the waiting room, I might be able to catch an overnight appointment (they run 24 hours here) that someone no showed for.  

She asked me if I was going to be okay today and I burst into tears.  NOooooo.  I'm not freaking okay!  There is SO much pain in my body right now I can't even stay ahead of it.  I can usually operate just fine while suffering....spent years conditioning myself for that mentally and physically but this is getting to be too much.  :(  She suggested I go to Emerg.  They'll put me on a morphine drip and possibly run the MR on an emerg basis, if it's bad enough.  Is this bad enough?  Really?  I'll miss meetings I really, really have to go to.  My job is what's keeping me going right now....(I know, health first, job second).  

I'm starting to lose my grip a little.  Anxiety seems to make it worse so I'm running in circles trying to blow off some steam.  I've even taken two ativan through all of this which will likely make me drop like a stone the second I get home.  *one can only hope*.