Sunday, March 11, 2012

it's 4:21 AM - do you know where your soul is?

mornin, sorta.  how are ya doin out there /?  i hope to God that the majority of you are sleepin peacefully, at the moment.
 as for me - ? second day in a row , that i'm wide awake at this time. if not earlier.  fun fun fun.  sleep is my  new hate.

 (almost done - it's now 7:59 - i reckon most of you are up now, geesh i'm slow)

well, non-sleep i should i say. sure there's a couple reasons why i can't sleep. but either way - it sucks. and it's hard to get back on track.  reason one - was the girls birthday. her big 18! after the food and festivities , at home, we we went to the movies to see 'the Lorax'. her boy friend came along, and she - we- had a god time.  after that we went down to a place in the mall so she could say hi to her best friend - since 7-th 0r 8th grade, just to say hello-.  (at her job) -minutes before we get over there - soulkis,  'tells' us - that the two of them will be going to 'denton' after her friend gets off work.

ummm.. hello?  you just decided  to spring this on us that your goin 30 minutes in each direction out the sticks in texas - after midnight - for three or four hours -- you two girls - alone?  and you expect no reaction from us?  hmmm. obviously turning 18 means more to you than us.  we were not happy.  we were in fact a little a trapped in a way.  her car is broken down -- since a couple months.  the jeep hasn't been safe to dive - or passed inspection/registration.. since we've bought it.  what other choice does she have but to drive one of ours? mainly mine.  but how are we sposed to pull the you don't have a car - card on her- when it isn't her fault that the car hasn't been fixed?  i have tried everything i knew how - to get it fixed.  to no avail.  i can't fix cars by myself anymore .  i used to be good at it.  just turned into somethin my mind and and body doesn't allow me to do anymore.  i've offered up the credit card !  against everything i believe in these days -- hubby just couldn't get it together. not enough to get it done.  we did get a tow-truck out here week or so ago to get it towed and fixed- the tow guy got it started - so hubby knew for sure he'd get it runnin with spark plugs and wires -- did it happen? ha ! in our world? hell no.  so - in the passed months - my lil car with 6000 miles has now racked up to 10000 miles + stains.  ' can't have nuthin!  i am highly upset - but it is safer for her than dad's truck.

so anyhow -- after some discussion with soulman - and his unnecessary roughness - Friday night we let the go - no good reason not to. but not without suffering major sleep deprivation .  i didn't take any sleep meds that night - it wasn't that bad for me -- without meds - i could stay up for for days.  hubby took his toll tho. it was rough - we're old.

anyhow - yesterday even with a day between - was rough having gone with sleep -- i was up til at least 6 am. i remember recording charlie brown around 5 am.  and still up watching the news at 6 ish.  no tellin when i actually fell asleep - i think maybe 7 ish, then up around noon.  can we say soul-  bah-itch.? all day yesterday - not to mention an emotional mess.

i strolled out of my room - at noon, after 3. maybe 4 hours of sleep- not uninterrupted i might add. in search of coffee -- coffee, pain meds, and a quick hello to the fam, and soulkid 2 who had spent the night.  --that was all i wanted out of my early day  life.  all i wanted - then a silent retreat alone in my room for for a while. just to collect my thoughts, and get myself together.

BUT  what was i greeted with very first thing, instead?  soulkid wanted me to take her to the mall. before my eyes were even half open.   i couldn't do it - i couldn't think about - i couldn't even discuss it.   i got my coffee - went to my room, and said we would have to talk about it later.  lucky for me she actually understood and allowed me to put all that off til today.  insert sigh of relief -  right here.
it also looks like we may make a family day of it too.  i hope it;s a nice- calm one.  my stress level is out the window lately !

so that next few hours went ok. folks kinda left me alone for the most part. i needed that.
the day escaped me.  the fam kept trying to get me to eat -- i have pretty much zero appetite lately.  i understand they worry - but i wish they wouldn't.  then later- they began to harass -- literally harrass me about me smoking cigs and stopping smoking.  there is never a good time for that.  i have had several docs tell me -- you really need to quit smoking - but seriously 'now' isn't a good time for you -- your stress level is too high.
i try to explain that to them.. they call dr's retarded. and keep pressuring me.  face it folks.  i have tried to quit - many times- many ways -- even to the point of cracking up to an extreme extant on chantix.  ever since then - i have an even more significant fear - of how far i am willing to go -- i have smoked longer than half my life.  it is my only constant - my only   - only.. that i can trust.
people just need to leave me alone about it.  seriously.

i have a very large load on my back right now and i have for many months. years even. i don't only carry my own load- i carry their loads- i carry loads of many others whom i care about.  i worry about and for folks that i don't even communicate with anymore -- but i still miss them, and have a hole in my heart for what we we lost.  even now, a few down the road i don't know what happened in some of these situations.. i try my best to limit the importance of many of my own issues - and these issues that confuse me.  i take blame where i know blame isn't on me.  but i accept it as it were on me.

i hide my fear, and i hide what i feel as if it were  shame - but it is merely pain.  it only feels shameful, because it is so misunderstood, and not wanted to be listened to or heard - or left behind.

i am diagnosed as PTSD- SHUT IN. (housbound/ agoraphobic).  bi-polar.  major depressive. - and maaany more-that results with the pain issues.

that is all so hard to swallow, as a person. especially a person like me. . afraid of people - terrified of new people - new relationships. crowds.  but i am willing.  i just have a problem with letting go in the area of my mobility.  a scooter? a walker/chair?,  a knee scooter?, a wheel chair?  worse of all- maybe - a chair lift in my home? 

the pain and fear of it - stops me in my tracks.  i wake up in pain - that would put folks on a trip to ER.  me? too stubborn.  i don't know - even all these years of feeling it daily -- it's just normal to me.  and apparently my family too.  i sleep too much.. i sleep too little..i don't eat for days,i eat too much- or not good stuff- i cry for the pain  -- i cry for 'no reason at all'- normal, just go rest - it'll pass.

if it is or were one of them... i wouldn't ask if they wanted to go to the hospital.. i would take em or call an ambulance. 

are they in denial? am i stubborn?  am i in denial?  do i just don't care?  are my dr's retarded? 

do ya wanna wanna know the next steps in my 'pain treatment?'

it's called 'spinal cord stimulation' - it is an internal electronic stimulator - placed inside your / my spine (wires) into your spine/ and a controller / battery thing - placed under the skin near my hip.
it sounds promising.  also it sounds a bit unsettling- wires. electronic boxes in my body.  ever think of a bath? WTF. the 'safety is a concern - as is the effectiveness - but i will try any damn thing at this point.

check out the video tho --   it really doesn't sound so bad --

and i have made a consult appt at the dallas VA - to see if i can get in with the spine clinic there -- maybe to save some cash - i have benefits there for service connected disability. i will also be trying to get my pain meds prescribed from there -- they would be free of charge from va - due to the service connection.  for several years i have been paying out of pocket for meds and my pain dr, along with all the shots and rhizotomy's and mri's and all that stuff.  i just can't afford it anymore.  so either i go cold cold turkey and call it all quits.  or i give VA a try .

i cannot afford the pain doctor anymore.  it may be the biggest mistake ever  to lose my pain doctor-- the best and only that i have ever had -- i fought for several years to find a doc who would treat me like a human who was truly in pain, and not drug seeking.  someoe who ran tests, found diagnoses, and has for years understood and tried to help me.  i just can't pay out of pocket all these thousands of dollars anymore for temporary relief. and 40.00 a month just to be 'looked at' before a new rx .

so i hope to hell- that the VA will give me the same meds and quality of care -- or better. on my benefits - and not out of pocket.   yeh - pray for that folks. cuz i really i need that outcome.
 i swear we're gonna be facing bankruptcy with all the freakin med bills over these last few, and coming  years without it.  so not something i want to think about - but it has crossed my mind -- among so many other things.

with soulkid turning 18, not only ave we lost her med insurance - she has been dropped as a dependent from my disability money -- a large chunk that we have depended on for several years.  as of April - things are gonna be much less
comfortable.. but we will survive.  it's jsut that medical is the first, and unfortunately the very important peice of of ur budget.  

then-- while i was researching this thing -- i came across something else that caught my interest.  i haven't mentioned it to anyone else -- don't you feel special?  it's made for 'med intolerant depression. ' y'all know i face many times in my life that i no matter what i do - what i try- nothing helps, and i just marinate in severe misery .. sometimes for months on end with no relief.  i know a lot of you ave no idea why or what it means - or why I can't just move on. i hope you know that i have no control over this- o matter how hard i try.   that would be due to my several mental, emotional, psyche issues.

 many years ago i talked my shrinkin an attempt at shock therapy on me - because nothing was helping me at that time- i was in-patient psyce - for a weeks by that time- but .- she wasn't ready to take that step then. i don't know if she's ready now.  i was , and have been  on every single anti depressant- anti psychotic- every mood stabilizer/ which are normally anti seizure meds-  - name it- i've been on it - and it eventually fails, and we start over.  some of the side effects of these meds have been hell.  or worse for me. some have been a God-send - until they contributed to admission,  seizure - or worse.

so- recently- i found i found this - also an implant - but - it is in the brain.  yup- scary- and something - that don't plan to discuss with the fam. unless or until it is approved.  but it is shown to help med resistant depression. and even lower the need for medication - or at least the amount of - etc.  i will discuss this at VA as well, when i go on 3-28.
the main prerequisite is that the patient must have failed only 2-4 medication failures -- i have failed them all.  i would be an idiot to no not attempt this. it seems much less scary to me than shock therapy. and much more successful.
a week or two - just before i heard of this implant -- i was seriously considering long term in patient Psyche treatment ---  6-9 months of it. N O- i didn't talk to anyone about it.  who the hell would i talk to about it?  but i have an every year bout with terrible depression... some years are better than others - but many - like this one -- simply awful for me -- september - to currently.  i know partly why that is - and part of it has been goin on annually for - close to 24 years.  this year i i tried so hard to talk about how bad it was for me.  i talked about 'triggers- as they happened- i did things i never tried before - to help myself - and be understood.  but i won't go further than that.  except to say - i shoulda kept my mouth shut.

but hey take a look at this -- again -- it just may be the miracle that i have been searching for-- for years.

ok - ready for my newest sad?  among the many.  yesterday, i began thinking of my soul-retreat.  the little motel in boles arkansas - or Y-city.  i have been wanting to go out there for a while lately.  even tho it isn't even close to a reality through all the soul fam happenings , up comings, and financial situation at the moment.  not to mention me needing to be here for soulman post op- ext week.  anyhow-- my heart is hurting right now for the reason, that my son Patrick -- 10-25-88 to 3-19-89  -- who is buried near my soul retreat obviously 3.19 is right around the corner-- and with so damn much on my mind - etc -- i just thought some time away - to my special place would be good for me.  so last night i tried to call.  i have Patrick there - and also jacob.  it's been two years since i was out there last .  and it ended with hurt feelings - i learned that - my stealth visits - should have - and would continue to stay stealth. because it was only MY soul that lived there.  soulkid came that time for the first time - i believe she understood it - and she appreciated her first visit to her brothers cemetery .  i do intend to take her back another time - but 'this' time - whenever i thought i could get there - would be just me .. again.
to my tearful sadness... almost to a point of grieving = even crying when i woke up- at about 3 am..  it's gone.  just gone.  it's a run down. not remodeled like i was told it would be the last time i was there.  i reckon i should just pick my jaw off the ground and find out if i can get a hold of the folks who own it -- i can find no way to contact them -- but i will.  maybe they will sell me one of the cabins by the creek?  or a lot? to leave a camper on?  or i should find a 'something ' for a place to go or stay - next time it's available for me to go.  another soul-haven.  it will never hold what that place holds for me.
i've been there with my fam before i lost my babies - i've been there with my soulfam - when soulkid was just six months oldi was there for patricks funeral - as was my moms side of the family = and my DAD - i feel like i lost a friend or family member -- i don't know what else to say about it.
except that my last memory of my last visit -- was not good.  some was.  but most - some folks found it entertaining to criticize the entire place.  and that is so in the way right now of the so many good and beautiful memories i have of that place.
'she saw it this way-


i will forever see it this way -

i guess one persons 'trash bag ' is another mans treasure'.  fo- shizzle.  i feel like my house burned down.  no other way to describe it.