NEED INPUT WITH YOUR DISABILITY EXPERIENCES b4 2.6, please

Hello Peeps - I don't post much online because I dont' have internet where i live. I get my daily outing by going to the library, copying & pasting reading materials (mostly research) and reading it with my morning coffee.

I am asking, all who care to, to contribute to my inquiry here. I deal with a traumatic brain injury and complex ptsd and a few other things. I've been dealing and reeling with the impact especially these past 10 years. We all know how grueling life can be with these types of 'disorders'. I have an opportunity to speak to the disability office of our government here in Alaska on February 7 (4 days ~ This only just came about) I am seeking information on what would help us the most to assit them in changing the system so it helps us, instead of harming us, which happens much more than many realize. ANY INPUT IS GREATLY APPRECIATED!! (including out of the state & country)

In advance, I thank you so much!

pearleySky

17 Replies

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  • Hi pearleysky,

    My profile is similar to yours - Although I'm from Australia. I've had a mild traumatic brain injury from a car accident 13 years ago and I've also been tagged as having complex PTSD.

    Apologies, I don't really have any specific advice.

    And this will sound more like a giant winge - But perhaps sharing my personal experiences might ring true with your upcoming communications ?

    I'm not exactly wealthy and I live in an isolated area with limited support services - and to be honest, whenever I went near publicly funded Psychologists etc. I consistently felt myself being re-abused and re-traumatized. Having the neuro - psyche vulnerabilities seems to have made me fair game for any nasty piece of work who decided have a swipe and/or didn't want to do their job properly. (I have a chronic illness also so the same dynamic has played out with Doctors)

    To be honest, with me - I think the tag of complex PTSD - which can be really misinterpreted with all kinds of wrong assumptions - along with a head injury - can lead to a lot of small minded discrimination.

    When I took a stand with our 'only' GP practice regarding not being able to get timely medical help (diagnostic overshadowing) - I wanted to change the system too ! But when I made an official internal complaint I was literally bullied out of the place. (While simultaneously heading toward renal failure - thankfully this has improved) At the time I had to make a 200km round trip drive to see a GP.

    For me - after this experience......I pretty much recognized the real discriminatory limits regarding ground level rights for people with our kind of profile. Ultimately both psychological and medical systems are composed of too many small minded, self interested, greedy, lazy and abusive people who - in geographical isolation - had become a law unto themselves and had no intention of altering anything that wasn't in their interest - eg. Having a go at working harder treating me like I'm fully human.

    When it comes to going up against negligence and bullying, I've learnt that in social terms (and legal eg: - I could have sued one of the Doctors - but a friend who's a lawyer said while my case was strong - please don't do it. They will attack every aspect of you and you're vulnerabilities and the stress could literally kill you. Plus I risk loosing what little money I have.

    After this I spoke to a disability lawyer and she acknowledged I've suffered some pretty awful repeated discrimination and negligence - but here there's not much I can do about it 'after the fact'. Just some token complaint processes that according to news articles don't achieve much.

    So I certainly don't feel equal on any sociological level. Just a slightly dodgy memory, some mild word finding problems was enough to be regarded as not really worthy of time and care - let alone complex PTSD.

    Apologies - this response is a bit jaded.

    But speaking as someone who comes from a background of chronic interpersonal invalidation and abuse - only to end up entering another period of life - post head injury where suddenly I've become consistently vulnerable to this dynamic - has left plenty of pretty large dint's in my c.PTSD and my health.

    I'm really wishing you luck when you speak to the disability office !

    Really hoping you can establish some solid outcomes.

  • Thank you for response Freckle1000 ~ Our stories are very similar I see. I've had the same nightmare experiences trying to get help. I finally gave up and finally had some peace. I've dealt with the same small minded (I use that word alot! ) staff non-stop. The worst are the ones who say they have trauma care training and don't - you can tell when they don't get it or think you should respond like a 'normal' person. I live in remote Alaska and qualified health care is spotty at best and almost always underqualified because they can't find anybody to fill the slot.

    I don't have much faith in any changes being made because the bottom line is - they don't care - they show up to grab their paycheck and that's it. Situations in life seem to have me lined to to at least try. My story tends to grab attention and I'm counting on that possibly opening a door or even more astonishing - maybe a mind. I've got a pretty good story with my own experiences - sorry - i call them shrinks because of all the abuse they deliver - One of the early shrinks (I don't call them that to their faces of course ;) ) told me I would be a great poster child for anything & everything that could go wrong. It's been a non-ending label that I can't help but notice and after so many experiences like that, it's becoming ingrained in myself. As of yesterday, I made another contact here in town that is working along the same lines. I tend to think if we don't speak up, nothing will happen....but I already know there's a very very slim chance anything will change, but I'm going to try. The challenge is getting past my anger, which I will do because I must.

    Sorry to hear your circumstances. I know there's more of us who suffer in silence, trying to return to functionality...with no help. I've done a ton of research on my own, and their abuses are even worse if you know what you are talking about. I'm also retired (disabled) out of the mental health field. It was hard not to notice how imbalanced most of these people were - different jobs, different places over the years. I had quit numerous jobs because they were so abusive to others. It's no different on this side of the desk. I feel it's a profession that needs to be eliminated. They cause so much damage with no accountability, as you well know.

    Strange boat we landed ourselves in, isn't it? I always feel like i'm in a twilight zone. Hard not to just accept the personal damage and move on - without all the added damage from professionals.

    I had experienced a modality (cranial sacral therapy) that had popped me completely out of it last summer - for two months I was normal again - it was such a Miracle. My neighbor caught her kitchen on fire and she came to me for help. My brain didn't freeze, which still amazes me and give the credit to the cranial work. But in the end, after putting the (huge!) fire out, I had carbon monixide poisoning which has put me back to zero again. THAT seems like cruel & unusual punishment to me. I don't 'get' life anymore.

    My speech tomorrow is my last ditch effort to participate. I don't know why I try....I guess because I truly know how many of us deal with abuses because of our 'conditions'. Our world is so crazy these days, they said the squeeky wheel gets greased....we'll see if that is even still true.

    Thank you again for your response. How do we make lemonade out of this lifetime of lemons? Million dollar answer ;)

    take care

  • Good luck with that speech ! - it might wake some people up.

    Without people trying - nothing changes. So well done for doing this.

    Sounds like we've had some similar experiences with shrinks - yes....I like the word shrink too. They love to reduce humanity into something less.

    I have no doubt that they do just as much harm as good. Over the last 15 years I've only met one that didn't have abuse as part of their therapeutic structure and she operated outside the contemporary DSM labelling realm (most of her practice was devoted to helping people overcome the trauma of those labels)

    There's nothing like being sub humanized and marginalized with a reductive label that for me seemed to kill off what little self confidence I had left. Most of the criteria of these labels seem to tell you you cant trust your own thoughts and personality. Especially bad when it comes from a healthy, privileged, controlling, manipulative individuals who whilst getting their jollies - as you've said - make a lot of money.

    I kid you not. I challenged one of the the last monsters I saw when she had a newDSM label for me. I told her I'd been labeled with three previous titles all on different branches on the tree - and her response was - well you have multiple personality disorder. Wow !- butter wouldn't melt. When I saw a letter she'd written to a GP about how she came up with the first label I saw - she had absolutely no rats and stats evidence. And this label got in the way of my Medical care.

    ps. My partner (who died 13 years ago now) trained as a Psychologist - and you're right - a remember a lot of his fellow students had some pretty profound psychological problems themselves.

    So again - good luck with your speech. This is actually an area I feel very strongly about myself. I tend to see Doctors as just arrogant and a bit sociopathic. Psychologists are worse.

    There's a Canadian study with bug crunching involved that showed one in three Psychology students are sadists. And the second one would assist. If you can get to a computer - google - Everyday sadists take pleasure in others' pain.

    ps. If ever you want a rant, you're welcome to direct it at me. It is all very discombobulating.

    All the best to you too.

  • Hello & an apology for my late response. the meeting was canceled by this government person. None of us had plans on trying to survive in this disability boat and you can sure tell, whoever decides our 'guidelines', isn't disabled.

    Your response was more timely than you realize. When I read your post, I had just received my summary on 5 hours of brain tests I had done in November. It was a waste of time, just like I figured. Your phrase 'reduce humanity into something less' was a perfect description - not based on alot of fact and couldn't help but notice how they will take one piece of information and paste it to another subject, which lends itself to incorrectness. I fully understand what you mention about what you know about the 'professionals'. I am a retired drug & alcohol counselor and saw more insanity in that field from staff and quit more than a few jobs because of the harm they did to clients. I also have a strong human resources background...so between the two, it's rather hard to fit in with the levels of absurdness that is so prevalent in the mental health field. It's rather a sore subject with me at times. The harm I've experienced since the disability label became prevalent in my life has been astounding. I have to say that had I known this tidbit, I would have changed fields immediately. I can say I helped people and could see the damages that had been done to many clients, but naievity and good intentions won out. Over 30 years I played in the healing fields and was always hired because I do alot of alternative therapies/modalities. I experienced alot of success with the clients tomy own detriment with jealous or at times, incapable staff.

    Refreshing to hear someone elses' experiences! My experience has shown me that they are only guessing and sometimes not putting much effort into that. Quite frankly, I'm exhausted with the whole game. It's rather pathetic we show up for help, because we desperately need help, and rarely come close to receiving help. How can they ludicrously think it's OK to show up for years, decades for 'help'. That's why I excelled in alternative therapies - they work. Mental health (and substance abuse) are money making machines and are not interested in results for the most part. In the end, it was a hard learn about NOT giving my power away and more repeats of the patternings from my childhood with my abusive mother.

    I fully agree with your views on doctors and psychologists/etc. At this point, I have no use for them and my past 10 years of succumbing to the system have been pointless. One good counselor (who happened to have trauma care training) made a difference...the rest, zilch and a complete waste of time, and walking away more harmed than when I went in.

    Interesting comment you made about the levels of sadism...I already know it's so true and will read the article you suggested. Nice to know I'm not alone in my 'allergicness' to the system ;) When I used to work in mental health, I used to say, if you're not crazy, you will be.

  • Hello again

    : )

    Please don't worry about a late response. I'm a pretty sporadic internet communicator myself.

    I'm really sorry that meeting was canceled.

    And thank you for being one of the good guys with drug and alcohol counselling ! I really believe its only the people who have suffered real trauma that can be effective at treating it.

    The horrible thing about complex trauma is we seem to become more vulnerable to the exact same trauma's we experience in childhood ?!?? and at this stage of my life I'm pretty sure It's not displaced memories or a skewed view of humanity. ( I had two fairly full on emotional abusers for parents - one overt - one very tricky. When I fell seriously ill in my teens - they didn't seem very interested in helping me get medical help) - my teachers essentially saved my life. After 48 years of life - I'm only just now getting a clear picture of who they are.

    What everyday people cant seem to grasp is just how difficult it is to re-experience different forms of the dark side of human nature over and over again - and try to assimilate it into our already frayed and worn out minds - let alone knowing that we seem to have become easier game for some - precisely because were disabled. I know seeing people as dangerous seems to be part of the cPTSD profile. But at the same time - its pretty real.

    For me its similar to being flung back into the vulnerable child state again. I loose the power of speech when I'm confronted by any form of uncalled for nastiness - and by the time I can unscramble my mind its way too late to protect myself. The head injury just compounded this dynamic - and for a long time I lost what hard fought for self esteem I had pre accident. (13 years ago now)

    I found once I got a full grip on how the head injury effected my daily life and interactions - the neuropsyche reports became irrelevant and my sense of equality came back. Try and see them as the 'very' vague (and souless) starting guide they are.

    And double YES ! I've spent probably just as many years on and off trying to get psychological help and I agree with pretty much everything you've said. There's been some good help come my way but the cost of the abusive aspect was way too high. (I could write a colorful and gruesome book dating back to the age of 15) There's been a pretty consistent pattern - some of it blatantly exploitative.

    In desperate moments I'm tempted to try counselling again but I've pretty much come to the conclusion that a good majority of therapists aren't able or willing to deal with complex trauma. (and it always feels like I'm crawling back to my abusive mother for love that isn't there)

    Ironically cPTSD people seem (?) to be written off and re - invalidated as a lost cause - instead of the therapist admitting they don't know how to help - or admitting to their own - and other peoples darkness.

    Sorry, I went a bit preachy & gothic there.

    I'm sure there's some good ones out there.

  • Thank you for your response. I'm in the beginning stages of putting a move (back to home!) together and the days sure seem to slip by quickly.

    I agree with what you mention about our trauma scenarios repeating themselves - I've noticed it too, the trauma stays the same, only the faces change. I am grateful I understand energy work, because it removes the trauma so it doesn't keep repeating itself. I use breathwork the same way OR i would have never made it through this ordeal. I've been dealing with the severeity for the past 9 years. I've had very impressive results with ~therapy. It completely popped me out of this 'right brain collapse' that accompanies c-ptsd. I had two magical months of wonder, having thought for years I'd never be able to pop out of it. Things were great -- could actually FEEL again - and my neighbor had a fire in her kitchen & I ended up putting it out, complete with carbon monoxide poisoning ontop of cptsd. That put me back to zero. I continued with the cranial work and it didn't seem like it was doing anything until a couple of weeks ago, and am feeling more complete again, with a learning on how I need to safeguard that 'feeling normal' again in any way, shape or form. I also, only a matter of a few days ago, began treatment with a new counselor, after I had reached to point of giving up & sickened repeatedly by the inefficiency of our system, that ends up harming us rather than helping us, which is one of my very sore points in this experience & have been rather vocal about on numerous occasions, sometimes with tears at the frustration for all of it.

    I was disappointed with the meeting being canceled, but seems to be the nature of the beast. One thing I've learned that I didn't realize before, is no one cares, not really.

    I had the mommy dearest experience growing up, especially after my dad & brother drowned in a fishing accident when I was nine. In the blink of an eye my life turned into a full nightmare on top of me raising my 4 brothers because my mother was always gone during the day, not working, just gone. Her impact upon me has been something I've worked through my whole life, finally ending contact with her a couple of years ago. It just didn't make any sense to me to keep showing up for more abuse. The relief in myself is palpable. I fully understand your comment about returning to the unloving parent, looking for something real, and it's never there....we always used to say, looking for that pat on the back that never comes, ever. This incident of a couple years prior, was the same story and the huge realization I had in the moment, that that was what I was doing and it was NEVER going to happen.

    During all my years of working with people, I had a knack in working with people no one else seemed to be capable of reaching. I guess trauma experiences do come in handy at times. When you deal with a head injury on top of cptsd, you really come to understand a whole other world. Personally, give me people with head injuries any day, at least they understand where non-head injury people don't have a clue, never will have a clue and don't seem to have the capacity to even trulyempathize...and they usually just don't care to understand. That understanding eliminated the rest of my family a couple of years ago as well. I have a new understanding on what orphans feel like, something I never thought I'd expeirence, but it sits in my lap, so intent am I on turning this presenation of 'lemons' into lemonade.

    As with typical cptsd, i trust no one. I've recently met a friend, which I don't usually imbibe, because it always turns out the same, with their non-understanding, nor willingness to understand. What works in this friendship is we are both sissies...scared of everything, especially trust. What a common foundation to have. We'll see how it goes, I have learned to have NO expectations because more often than not, it doesn't pan out, but I try to keep an open mind and I do know how to navigate the world of self, by the self, for the self and in support of my own self & the peace I continually hunt.

    I react like you with any type of nastiness that finds itself on my plate. I have a very hard time controlling my impulse to react the same way they have presented to me....but the thing I've learned that has helped me understand this process the most is the fact that when we are triggered (ptsd style), the triggering is facilitated by the right brain collapsing...when that happens, we are utterly helpless and hopeless, not just the mere words, but like 1000%. That's formidable enough...added to that, we CAN NOT ask for help, we CAN NOT help ourselves. Our cortisol levels drop, our heartbeats drop 30-40 beats a minute, the body thinks it's dying because of the hormonal drops...and suicidal tendencies are explained therein. Trying to function, when we are in this state, is beyond cruel & unusual punishment in a beyond ignorant world. I was actually kicked out of a business when this happened....all i was doing is literally scrambling to be able to function to take care of my critical business and all they saw was someone being unreasonable and I was kicked out! I've never been kicked out of anywhere....I cried & cried with the frustration of it all, but was able to talk to another employee a few months later after I came across the information (from a neurology/psychology doctor) that I could share the information with them ... and they got it. The realization that I cannot navigate the world I used to work in so proficiently is a hard pill to swallow. This explanation for other people to understand has gained more ground than anything else I've tried. For the past 7 years, I've tried to explain to people I already knew, whom I wanted to keep in my life, how it was and took a little while to realize, I was wasting my time, and moved into not explaining to anyone about anything. Then I learned about the 'right brain collapsing' and it seems to get through to them. I have to say, this cranial work has really helped me in this department, but at least I have the understanding now to explain to people if the need arises. Thank God for other brain injured people!

    My move isn't going to come together til this July, so I'm going to continue with my now monthly cranial appointments and weekly appointments with this shrink, who is impressing me, even tho she doesn't have trauma training - which usually sends me scurrying out the door because it's always a waste of time and I'm the one who suffers more damage if they don't have it...but when they know how to do energy work, when they can remove the patterns that we carry from our pasts, that bring more of the same to us....that's when I'll show up. I've been in the energy work field for over 30 years and that was the reason I was hired in these cavemen mental health professions. It always turned out that my work availed itself to impressive healings...where the clinical staff didn't have that experience...it never worked out - it worked for me and the clients, but mental health is a money making business and they aren't into solutions nor healings. I traveled and taught my 'brand' for those 30 years, sometimes punching a clock, but mostly focused on my own business & teaching & doing the healing work on my own - no rules, no ludicrous paperwork, nobody breathing down your neck.......so part of this move I speak of, is moving back home after being gone since 2010. I already have a reputation of doing this teaching & healing work there. While my brain issues have been since I was very young and I learned to navigate the work then and did some pretty impressive things I might add, then the brain collapsing consistently and me pulling myself out of it....and I'm contemplating going back home and doing what I'm good at and forgetting this nightmare world of disability & the system itself.

    6 months after the murders, I had a stalker hook onto me and it's taken me the past 5 years to get rid of him. The last 3 years specifically I have been running & hiding in order to evade him blindsiding me one more time. I have to say, dealing with this stalker (ended up with everything I owned and $12,000 less in my bank account & couldn't deal with anything legally because of the court proceedings with the death scenarios ~ long story) was worse than dealing with murders in my family. Nothing in place to keep us 'disableds' safe. I hope to be able to speak up about it someday, thought maybe this meeting might be a beginning, but like everything else in this disability world -- help that is not really help is all we seem to be offered. Most of us in this boat, aren't vocal and are anti-social, at least I am...so they don't hear from this population that desperately needs changes. So I'm trying to show up and help navigate desperately needed change, and is how our communications began.

    I've slowly backed out of all my appointments but cranial & energy work. The appointments themselves were wearing me out - it was all too much for nothing and nothing never changed. Returning home seems to make the most sense. I'm 62 and not ready to go out to pasture yet. I'm more alive when I'm home than anywhere else and haven't been able to go home for the past 7 years because the stalker pops in & out of there, so I stayed away all these years. The cranial work has helped me enough to where I can handle going home, whether he's around or not. That's rather huge in my world. I've never been so determined at anything in my whole life, as pulling myself out of this dark spiral that does anything it can to keep me on the bottom, flailing about, no responses to breathless utters of 'help'. no one. None of us should have to live like this. So, I'm going home, hoping that my connection to the land & water there, outweighs any human interaction that doesn't 'get it'. My life was destroyed in an instant when I testified in court against my daughter (drugs) so she could grow up with her dad in a pristine environment instead of the drug infested world my daughter was offering her. 7 years have passed and my granddaughter is thriving at home and since this ordeal began, I have had no help at all from any family member...no family...and am only recently healed enough to even begin to resume relationships in this part of my family that I also kept at arm's length all these years. I'm so tired of this disabled life, I'm stepping up to the plate to life in a place that feeds my soul just by it's sheer beauty and at times harshness.

    Life is like a box of chocolates....;)

    Nice chatting to an intelligent person who gets it because you live it. Thank you.

  • Hello again

    : )

    Really glad to hear from you again.

    I've just read your post and so many things you've said ring true - yet again !

    Currently however I have the attention span of a goldfish so I'll wait until some of my frazzled emotional neural pathways re - connect properly to the bewildered frontal lobes so I can respond with a bit of clarity.

    I think what you've revealed to me regarding your childhood and adult experiences really deserve a clear headed response so I'll wait to respond to those issues.

    Due to a recent 'straw breaking the camels back experience' Today I forced myself to a first appointment with a psychodynamic counselor (new for me) - and yep. Definitely a draining process. I'd forgotten how I tend to loose 3 days of 'feeling safe' surrounding the appointment. Dissociated the day before and during the appointment. Absolutely mentally and physically drained. One previous counselor told me my mind was developmentally too mangled for this kind of therapy.......(or any really) - better to meditate and distract etc. We'll see. My instinctive response to the therapist was good. Hope yours was too ?

    Please tell me about your energy work field.

    I'll respond with proper detail very soon.

    X

    ps. I've already done what you're thinking of doing - returning home - away from the rat race. Being close to nature for me has been very healing ( you're right - safe - with no freaky people) (and I'm a bit of an animist - long story - very hard to explain - and I don't want to go too hippie on you all of a sudden) But being in contact with nature has become vital to me. I spent many years hand rearing orphaned brush tailed possums - which was very therapeutic.

    But for me one problem did occur big time though. Coming back to the place I grew up did give me a bit of a sense of place - but it was a skewed sense of place with landmarks -and some types of people and situations that triggered a grinding kind of generalized dread. If there's a chance it might be the same for you, I'd advise a long visit to test the waters before making a major move.

    Before I relocated I had one psychologist suggest that it would be an opportunity to overcome some of these memories head on. About seven years on and I'm only just beginning not to be creeped out by the place and to be able to feel like I'm overcoming the bad vibes from childhood attached to the place. Also slowly starting to feel like the locals aren't 'all' frontier psychopaths and its 'equally my' home too. (A lot of the people are really decent - I just can't quite trust it totally yet) Coming home is a tricky one. I'm related to three quarters of the population here but I still feel that grinding sense of being utterly alone in the world that you spoke about so eloquently. (and the self work and psychological self sufficiency that needs to come with that)

    More very soon.

  • Me again,

    Just had a re-read of your post with a slightly clearer head. I hope my 'extremely subjective' experience of moving home hasn't put you off.

    Despite the horrific experiences you've been though I felt a great sense of peace and achievement mixed in with what you've written. Reading your post was actually quite healing for me.

    I can especially relate to the rejection that comes with brain damage. I have some mild memory problems and word finding difficulties - and this mixed with being an abuse molded doormat has really left me bewildered by how quickly I'm written off socially. Its like being trapped in your own head while watching humanity it all its impatience and need for superficial amusement.......well, you know. Its pretty evil stuff at times.

    Over the last 14 years my family has slowly but surely rejected mein part just because of the brain damage. (& in part due to me drawing away from them due to the realization (from therapy) that I was raised by wolves. Right from the cradle my mother was a tricky manipulative sadist (hiding under the veneer of the perfect 50's housewife) and my father an 'obsessive' under-miner - the exact obsessive opposite of encouragement. Every thought and feeling was deemed wrong, worthless - contemptible. He was also good at frightening me about the doom and gloom about almost everything - again - inflicted when too young. And all on a small isolated farm. Nowhere to run or hide.

    I was glad to read that getting that distance from your family helped you so effectively.

    Something I'm going to have to go to the next level with - I've been mentally and physically distancing from my family for years but they still manage to monster me with unwanted phone calls etc. I've officially estranged from them twice - mostly when really physically ill. But I always ended up feeling guilty about it. Something both parents were good at making me feel in childhood. Still a lot of mixed feelings to sort out. I feel slightly idiotic when describing their natures in the previous paragraph and still feeling there's some good in them. One psychologist was adamant that they are both psychopaths. That 'splitting theory' stuff - when the child brain convince's itself that the parents are good - and will thus will feed you - (so as a kid you don't totally loose your mind) despite all obvious evidence - still messes with my adult brain.

    I'm really sorry you were abandoned by your mother and left at home alone to care for your siblings. That must have been absolutely terrifying and if your anything like me - horrifically confusing. And to have elements of your family re -abandon you in adulthood is so bad. You bravely did the right thing protecting your granddaughter and now your paying an unfair price. And on top of this - the death of your father and brother !!!

    You've done well to remain vertical and functional - let alone to have contributed to others mental well being with your energy work - (did a google) while dealing with colleagues through cPTSD goggles. (reality goggles)

    I can definitely relate to working very hard to clear the head of dissociation - only to have it obliterated by more trauma. I'm obsessed about clear headedness. I feel like I've fought half my life for it. I tend to have one or two days of fog - then one or two clear. No neat pattern. New trauma's just lessen the clear days to next to none for prolonged periods.

    It's all just way too much horrific unfairness.

    A lot of my problem is that I'm not good at accepting unfairness and just letting it be. A bit like you - I want to put things to right (esp. Medical systems and doctors/- see below) but for my own health I've decided not try. I have a a strong option of going after some Doctors legally, but a lawyer acquaintance has told me the stress of the process would probably kill me - have very little effect on their behavior and absolutely no effect on the medical system.

    I'm still festering on that one.

    When I was 9 years old I developed SLE Lupus (its a genetic illness - but lots of PTSD specialists believe with some people its triggered by trauma/abuse. With me I have an over - reactive immune system that very quickly attacks internal organs without much outward sign of looking ill.

    I won't go into the gruesome details but I'm now 49 and have spend the last 13 years dealing with utterly preventable internal organ damage - something I'll have to live with for the rest of my life. But what really gives me the shiny badge of cPTSD in regard to the disease aspect is consistently being unable to receive timely medical care every time the disease flares - due to repeated discrimination/doctor laziness - their excuse being that I'm visiting the Doctors just because I'm anxious.......neurotic - or whatever other facile assumption their in the mood for that day...... and ironically, when I respond with more anxiety and profound edginess at not getting the desperate help I need......lets just say I just don't have a hope in hell of getting proper medical attention. (A lot of women with autoimmune illness endure the exact same scenario) For 20 years I endured a senior rouge specialist who without my knowledge - declared me anxious to unquestioning general practitioners every time I became seriously ill......and not one of them shared with me what he was writing in his letters.

    The illness can kill you pretty quickly and I've been in these extended states of desperation (ie in a state where I knew the illness was killing me) ......if I add it up - about 7 years over a life time. If I push too hard or seek - legal advocacy in these situations it just makes things worse -total withdrawal of care. So its kind of like being trapped in a nightmare that I cant place neatly in the past. I have to accept living with the accumulated disability that shouldn't have happened - the still active illness and more Doctors (who are trauma triggers in themselves) who sometimes continue to act in the exact same manner. Nonetheless I'm more confident I can control the situation now despite a recent brain snap.

    Also - in the more traditional - PTSD category. I was a passenger in a car accident where my partner of 7 years was killed. I was knocked unconscious for a minute of two and woke up in the car to see how violently he'd died. (I had to be resuscitated later on)

    We shared a similar traumatic upbringing. So the aftermath of dealing with grief and both his and my evil bloody family in this situation was shocking - especially when I was neurologically vulnerable. (and physically crumpled - many bones broken)

    My one compensation amid all these - close to death experiences is that I've had (for want of a better way of putting it) some 'experiences' that cause most people to accuse me of being a Buddhist. Very much like your energy work (?) This is what has helped me make it through. Right now after about 3 years of being in constant illness (this last round I almost lost my kidneys) I'm only now just beginning to re-connect with this side of things.

    Hope your doing OK.

    X

  • I find myself so appauled at the system we get placed into with the label. I've been having cranial sacral work done for the past year. It has really helped my brain. After about 20 sessions, last summer I felt normal for the first time in 10 years. It was such a miracle - every second seemed like such a miracle. Then, my pill addicted neighbor set her kitchen on fire one morning and came screaming into my place thru my living room window. Long story short, I put the fire out and got carbon monoxide poisoning in the process. I had fire fighter training (was getting my merchant marine card) and was grateful it kicked in instead of my usual FREEZE about anything & everything. It put me back to ZERO and the struggle has been much more slow compared to the first round with cranial. It didn't seem like it was going to bring me back up to 'normal' - whatever that is & I slumped into an even deeper depression. About a month ago, I felt the same kind of shift I felt before. In my own mind, the longer I stay in this 'normal' mode, the more it might hold when whatever's next comes down the pike. My memory still gives me issue, but it's nothing like it was before. I've been dealing with this 'right brain collapse' most of my life, but after the 2008 traumas, it was more often collapsed than not. It's been such an ordeal, trying to explain to the (what I thought was) important people in my life so they'd understand. What a waste of time. Like many of us, I've spent all these past 10 years researching, looking for a hint, for an answer, for some hope. Finally I came across a video done by a neuro doctor who explained it about as perfectly as it can be explained...and finally, by someone who know and not this other disinformation that is so rampant. The name of this video (youtube) is:

    Dr. Allan Schore physiological impact of dissociation

    if you'd care to listen to it. I know what he says is true because it's what I experience with this brain label story. When I heard about this dissociation part of ptsd, I was rather concerned that here's one more nightmare thing we have to deal with. The reason I watched this video is because he was talking about dissociation which is a typical part of ptsd. He basically says that when we become dysfunctional, it's because the right side of our brain has collapsed. Instantly we feel intensely helpless and hopeless (like 1000%!) We can't do anything on our own, can't turn to anyone for help. The brain collapses (his word) but the mind is okay. (I so hate that feeling). The heartbeat drops 30-40 beats perminute. The cortisol levels go off, affecting the hormones. At this point, the mind dissociates which means it goes somewhere else....the other option is the mind becomes suicidal, because it thinks it's going to die because of the cortisol/heartbeats/collapse.....i believe it said something about complex ptsd people experience this. The fact that other people's ignorance in their own behaviors that trigger us into this 'stance' pretty much puts me into zero tolerance. I saw some statistic that said half of america has ptsd. we are a ptsd nation these days and in my experience, there's not really much help out there for us - altho i have received great help from alternative modalities, including energy work. People have no idea of their capacity to further damage us, and there are those who do not care one way or the other. I have to say, the people I've met because of brain issues, are some of the best people I've met in my life. It's crazy with us having to work around each others brain dysfunctions, but at least someone understands ;) I've become an expert at elminating people out of my life because they set my brain off because of their ignorances. I used to be such a social person, that was then.

    I've been dealing in the system trying to find someone to interpret a 5 hour brain test I had done in Anchorage last November. I live in a small city in Alaska and our services are greatly inappropriate for what we deal with...and I admit, I am a tall order with my story. 10 years of 'counseling' has been 10 years of wasted time. The results I've gleaned have most been through cranial and things I know how to do.

    When I mentioned moving home, i'm talking about my second home. A good year ago, I moved back to my birth home for a year - wrong choice and learned something about the people who are left in my family that I didn't know. All the good people in my family passed on many years ago. I had always felt strength knowing my family was out there -- oops!!

    So, I lived on Kodiak Island for over 20 years (been gone 7 years) and I consider that my home. I'm more in love with the land than the people, but my granddaughter is there and she is part of what turned my whole world upside down. I need to connect to my favorite places there...and am finally ready to interact with my precious little granddaughter who is 11 now. My life was destroyed with my 3 daughters when I testified in court so my granddaughter could come back up to Alaska to live with her dad. Because of the stalker story, I didn't think I'd ever be able to go back to Kodiak, for risk of the stalking beginning again. The cranial has helped me to the point where I don't have the intense fears of the stalker anymore. That one was a Long Time Coming. I'm so tired of everything the system throws at me that I'm intending on returning home and picking up my 'normal' life where I left off with it there. I realize my brain has collapsed since I was a kid with the original trauma. I've been dealing with it all my life, but the 2008 traumas collapsed it for 4 years solid. It was horrible and I do everything I can to not allow stressors put me there again, excruciating doesn't quite cover it. Life sure has changed....I'm so devout in trying to turn lemons into lemonade...my greatest hope is to be able to get a handle on this collapsing and then help other people with it - the system is sorely lacking and most people don't have anywhere else to turn. I'm 62 and am not quite sure how that happened...and if i don't do it now, then....when? My hope is to begin my own practice again and give the system some competition. I gave up on it many times over these past 10 years...but it still remains...so there must be a reason ;)

    deep peace to you

  • Hello again,

    I'm really happy to hear from you again.

    Unfortunately I'm just on the cusp of having to travel away for a week and a half to see some Doctors (not fond of them as a species - especially when they hold my life in their hands).

    Its a long haul trip - being from Alaska I'm pretty sure you know what I'm talking about - yep....services here are pretty short on the ground here too.

    Ironically part of the reason for the trip is because local GP's don't quite know whether I'm entering a different 'form?' of dissociation - ie - the cPTSD is becoming worse or different - or its actual neurological degeneration. (a risk with the illness I have - Systemic Lupus Erythematosus and an old concussion/head injury).

    I'll definitely have a look at the Dr Allan Schore video. A lot of the things you spoke about - especially the Blood pressure problems ring very true ! For me I think dissociation comes either with the BP's going too high or too low.

    I'll reply with a lot more detail when I get back.

    Wishing you some deep peace too.

  • Hello again.

    I hope what I type here makes some sense as I'm a bit wonky from the travelling and neuro trauma issues - The Doctors I saw didn't allow much time to answer some pretty gnawing medical/neurological questions - so - perhaps a bit like you with your neuro report ? - i'm festering on what the hell is happening.

    Its pretty obvious the Lupus is effecting my nervous system but everyone is very elusive about it - and to top it off - the specialist who should have answered my questions was elusive rude & unsympathetic - managing to blame me for her not answering my questions. Doctors are lovely. I wish to god I didn't have to deal with them on such a regular basis. They've been a large source of my cPTSD. and unfortunately I'm used to their verbal monstering - when all they really have to do is take a few extra minutes and be honest.

    I've just had a look at the Allan Shore video you recommended. I think I'll be looking at more of his clips. Its interesting in that - from my car accident I do have some mild 'right' side frontal and temporal lobe atrophy and I did have a neuropsychologist tell me that controlling extreme anxiety (The PTSD dissociation response) might help stabilize that injury. Her suggestion was - meditate - meditate and then meditate again.

    Its also interesting that my blood pressure is currently way off - all over the place which is due in part to illness. But Prednisolone (a 'cortisol' drug that replaces the normal cortisol - adrenal function) is also a culprit. Today I upped the dose and managed to bring some slightly scary blood pressure problems somewhat under control. But also interestingly - its possible I'll have to go off the stuff as its causing a kind of delirium where at times I just end up just staring at the wall.

    So a definite yep to the Allan Shore clip.

    I can definitely relate to the feeling of literally loosing my mind perceptually and emotionally. Between the neruo, ptsd, and medication issues - I feel like I've been plunged into a void that I'm not sure I can escape. I tend to push against it - trying to clear my head but - of course that's just another trauma response and compounds the problem. I've become obsessed with altering medications to try and clear my head - only to find If I go off the medications I'm left with a perceptual state that's not 'me' anymore either. It is truly horrific.

    There's the theory that its the cortisol medication that's doing me neuro-perceptual harm - but I tend to forget about the good old fashioned dissociation. (Seeing an endocrinologist soon)

    I can also definitely relate to the feeling of abject helplessness and being chronically stuck. And definitely the constant thought that I'm going to die. Its not actually an irrational response to my illness, but its a bit more of an obsessive thought for me than most people who have the condition.

    Its possible I should stop asking my Doctors for an answer to the fog/right brain stuff and also mortality and start working on myself a bit more - stop the dependence - live in the now. I need them to stay alive - but perhaps I'm looking for solutions they cant offer re: trauma induced dissociation and thinking I'm going to die issues.

    "Thank you" for showing me this video and your last post. Its literally inspired these new thoughts !

    From my recent foray with another psychologist - Its also become apparent that the only person that can help me is me. I encountered some distress correcting some assumptions misconceptions and explaining complex issues - only to have her gently deflect and run away from my problems when she realized what they were. She seemed scared of the serious issues. So....in short - it started with invalidation of what I was saying - and finishes with a form of abandonment. Great - just what I needed - again.

    When you're isolated and alone, the people who really don't give a stuff (even when they're paid to do so) can seem like true monsters. I think If I had a supportive family or at least some sort of in-group I'd feel more protected - and the 'low on empathy people' wouldn't reduce me to a fetal position.

    Self help is the way. Even with the support of a shrink - the only way is too get yourself out of that freeze state (Just keep moving?) and to look after and focus on yourself - as apposed to focusing on freaky people and trauma.

    I really believe it all boils down to the survival instinct. At least here we have a reliable social security safety net and public health system. So I get what you're saying about USA ptsd. Being able to assert yourself (ie- survive) such uncaring systems is terrifying - even here. But there - yep - from this distance it looks much scarier.

    When you're alone there's a definite need to be able to navigate and assert yourself in this horrific world, but when you're neuro compromised and face discrimination its all the more terrifying and can absolutely deplete you.

    Not so long ago I had to actually formally threaten a Doctor who refused write a time urgent - needed prescription (long complex story) but really just the usual - self serving motives on the part of his practice. I ended up writing a lot of emails demonstrating what legal and ethical codes of conduct they were breaking and the regulatory commissions I could bring down on the practice - I ended up fending off a lot of nasty phone calls by saying very little. It all ended up in a kind of a face off. They blinked first. And I got the prescription. This definitely isn't something I'd usually do - preferring to avoid conflict - but I couldn't just stop this medication without a bit of bodily damage. It actually felt quite empowering. I think the actual realization that I was absolutely alone in this situation (and all others) helped me to realize the only person who will help me in this life is me. I feel a bit stronger and competent for it - but it all seems so morally dubious to feel better because I won a nasty fight.

    I think re-connecting with nature is an excellent idea. I know after the Vietnam war a lot of veterans did just that - went as far up bush as they could and lived in isolation. Some of them formed isolated communities (and some drank a hell of a lot)

    OK. I better go meditate.

    Sending you some good vibes.

    X

  • 17 hours agoFreckle1000 4.10.17

    Hello again.

    I hope what I type here makes some sense as I'm a bit wonky from the travelling and neuro trauma issues - The Doctors I saw didn't allow much time to answer some pretty gnawing medical/neurological questions - so - perhaps a bit like you with your neuro report ? - i'm festering on what the hell is happening.

    Its pretty obvious the Lupus is effecting my nervous system but everyone is very elusive about it - and to top it off - the specialist who should have answered my questions was elusive rude & unsympathetic - managing to blame me for her not answering my questions. Doctors are lovely. I wish to god I didn't have to deal with them on such a regular basis. They've been a large source of my cPTSD. and unfortunately I'm used to their verbal monstering - when all they really have to do is take a few extra minutes and be honest.

    I've just had a look at the Allan Shore video you recommended. I think I'll be looking at more of his clips. Its interesting in that - from my car accident I do have some mild 'right' side frontal and temporal lobe atrophy and I did have a neuropsychologist tell me that controlling extreme anxiety (The PTSD dissociation response) might help stabilize that injury. Her suggestion was - meditate - meditate and then meditate again.

    Its also interesting that my blood pressure is currently way off - all over the place which is due in part to illness. But Prednisolone (a 'cortisol' drug that replaces the normal cortisol - adrenal function) is also a culprit. Today I upped the dose and managed to bring some slightly scary blood pressure problems somewhat under control. But also interestingly - its possible I'll have to go off the stuff as its causing a kind of delirium where at times I just end up just staring at the wall.

    So a definite yep to the Allan Shore clip.

    I can definitely relate to the feeling of literally loosing my mind perceptually and emotionally. Between the neruo, ptsd, and medication issues - I feel like I've been plunged into a void that I'm not sure I can escape (that is why i wanted to .speak. at sail) . I tend to push against it - trying to clear my head but - of course that's just another trauma response and compounds the problem. I've become obsessed with altering medications to try and clear my head - only to find If I go off the medications I'm left with a perceptual state that's not 'me' anymore either. It is truly horrific.

    There's the theory that its the cortisol medication that's doing me neuro-perceptual harm - but I tend to forget about the good old fashioned dissociation. (Seeing an endocrinologist soon)

    I can also definitely relate to the feeling of abject helplessness and being chronically stuck. And definitely the constant thought that I'm going to die. Its not actually an irrational response to my illness, but its a bit more of an obsessive thought for me than most people who have the condition.

    Its possible I should stop asking my Doctors for an answer to the fog/right brain stuff and also mortality and start working on myself a bit more - stop the dependence - live in the now. I need them to stay alive - but perhaps I'm looking for solutions they cant offer re: trauma induced dissociation and thinking I'm going to die issues.

    "Thank you" for showing me this video and your last post. Its literally inspired these new thoughts !

    From my recent foray with another psychologist - Its also become apparent that the only person that can help me is me. I encountered some distress correcting some assumptions misconceptions and explaining complex issues - only to have her gently deflect and run away from my problems when she realized what they were. She seemed scared of the serious issues. So....in short - it started with invalidation of what I was saying - and finishes with a form of abandonment. Great - just what I needed - again.

    When you're isolated and alone, the people who really don't give a stuff (even when they're paid to do so) can seem like true monsters. I think If I had a supportive family or at least some sort of in-group I'd feel more protected - and the 'low on empathy people' wouldn't reduce me to a fetal position.

    Self help is the way. Even with the support of a shrink - the only way is too get yourself out of that freeze state (my thots) (Just keep moving?) and to look after and focus on yourself - as apposed to focusing on freaky people and trauma.

    I really believe it all boils down to the survival instinct. At least here (where is here?) we have a reliable social security safety net and public health system. So I get what you're saying about USA ptsd. Being able to assert yourself (ie- survive) such uncaring systems is terrifying - even here. But there - yep - from this distance it looks much scarier.

    When you're alone there's a definite need to be able to navigate and assert yourself in this horrific world, but when you're neuro compromised and face discrimination its all the more terrifying and can absolutely deplete you.

    Not so long ago I had to actually formally threaten a Doctor who refused write a time urgent - needed prescription (long complex story) but really just the usual - self serving motives on the part of his practice. I ended up writing a lot of emails demonstrating what legal and ethical codes of conduct they were breaking and the regulatory commissions I could bring down on the practice - I ended up fending off a lot of nasty phone calls by saying very little. It all ended up in a kind of a face off. They blinked first. And I got the prescription. This definitely isn't something I'd usually do - preferring to avoid conflict - but I couldn't just stop this medication without a bit of bodily damage. It actually felt quite empowering. I think the actual realization that I was absolutely alone in this situation (and all others) helped me to realize the only person who will help me in this life is me. I feel a bit stronger and competent for it - but it all seems so morally dubious to feel better because I won a nasty fight.

    I think re-connecting with nature is an excellent idea. I know after the Vietnam war a lot of veterans did just that - went as far up bush as they could and lived in isolation. Some of them formed isolated communities (and some drank a hell of a lot)

    OK. I better go meditate.

    Sending you some good vibes.

    (*)

    Hi Freckles - I was wondering how your trip went. Kind of a humbling experience we are in, ey? I so empathize with you...been there so many times. It would seem, we might ALL come to this point of contention we speak of? I am so there.....It took me almost 10 years to realize 'I am the best hope I have'....and most times, I am the Only Support I have. I've always been a bit of a loner, and after this last life .ding., I've really been a loner. Eliminated family & friends. If they made my brain collapse (most often by their ignorance & misunderstanding) they were gone. Nobody was worth the pain....wasn't quite 'painful', but you know what i mean - the feeling of dissociation.....maybe the world would be more accomodatable if I was always dissociated...you'd think that would eliminate 'triggers'?? kind of kidding ;)

    Glad you liked the Allan Schore video...when i have to describe something about myself, I use his information to convey what i deal with. It's better as a tool, but i believe the bottom line is people just don't get it unless they have it -- PERIOD. Since this happened to me, I've met other brain issued people - they certainly are a better calibre of people....and so many of us have death sentences hanging over us and in my mind, the meds they have us on are more the reason for that than whatever 'illness tag' they've pinned on us. I've never been a pill person and there were times in the beginning where I would have taken anything, ANYTHING to get my head to stay back on my shoulders. I ended up taking zoloft for a year and a half and then took myself off it. I am not judging anybody that does take meds - just for me, and partially from influences from my grandmother, I always lean more herbal or energy work. I'm so in the same boat my friend, dismal indeed.

    At least for me, the cranial work has given me back to myself, probably as good as it's going to get. My life is so sedentary, to keep stress levels down consistently, so my brain can get used to not being triggered as a normal state, and I'm bored to tears in so many ways. I've accepted so much, that I'm getting to the point where I'm thinking about walking away from all of it - NO MORE DAMN APPOINTMENTS (!) that do more harm on a consistent basis, than helping. In the early days, I went to them just to keep busy and I was dealing with stalker safety issues in those days.

    I was looking back over these past 10 years a few days back. Other than somebody to talk to, they were a waste of time. I had two counselors over these 10 years with trauma training - they helped, the rest were just sucking up medicare's money without blinking an eye. I think most of all, I'm so appauled at what they deliver to us as a system. APPAULED. If they don't live it, they don't know...and at times, don't care. Hard to be on the receiving end of that. And more often than not, it's their own personal character defects that do us harm, with no accountability on their end for harming us further. It's such a bottomless pit and I guess, we are bottom pit navigators...excuse me, let me wipe off the crap from my glasses so I can see where we're going, Madam..... ;)

    I feel for you regarding your trip...and the aftermath. The last time I traveled for a doctor, it was such a nightmare, I can't go again - total freeze, and that feeling you get in your stomach just before you dissociate....thing is, our world is becoming a PTSD world....the system is so unable to help us.....does that mean PTSD is going to become the norm??! I'm so determined to come out on the other side of this ordeal, and to help other people with the same. I totally get, on a whole other level, not to say that I never understood it, because I do - what you mentioned about the vets living in the woods....I so get that on all levels now. It's such a horrible, demeaning way to live, if we don't help ourselves, WHO is going to help us?? Praying hasn't gotten me much of anywhere.

    The thing that gets me the most is the LACK of much of any quality of life....specially for people like us, with no family support.....as I listen to myself as I type...the only other choice I/we havent' explored is....helping ourselves. I know how. I've taught people for most of my life about one thing or another (treatment centers, womens shelters, homeless shelters, detox centers, and just on my own) how to live better and I always include some energy work and it's always been the energy work that really gets the results. After my .ding. happened, I couldn't even do energy work on myself, which was one of the most appealing reasons I learned it in the first place. My brain just wouldn't go there - like my hands were tied. I developed a method of breathwork over the years that has saved my skin and I have sorely tested it over these years and I know beyond a doubt, that I've received more help from my very own breathwork, than ANYTHING else that came down the pike. I find I'm pointing towards, consistently, just showing up in my own space and offering people what I know. We are such a world of pain these days in such an uncertain world. I've always taught about 'one supporting the other, so the one can support the 'other' as a way 'out' of this mess. I have tried every avenue the system touts to no avail. Alternative medicine/energy work is the only thing that makes sense to me these days.

    In the next few days, I'm going to call a contact I was given for a native healing circle here in town. They do sweat lodges and other sorts of native healing things, and have supported each other through some traumas...sounds right up my alley. I used to work with medicine men, and haven't been able to call them for help since this happened either - totally FROZE...course that is part of this brain collapse - can't help myself and can't ask for help...and can't should be in capitol letters ;). It's so much like being in prison.....I'm a firm believer in making lemonade out of those life lemons and I have for the most part, but it's taken me 10 years....10 years I can't really remember, until I look in the mirror and see the lines on my face that weren't there 10 years ago.

    We may have spoken about this previously...you know how it is with brain issues ;), where do you live?

    I totally understand about your trip. My whole 5 hour grueling test was a waste of time. I was appauled when I realized they can't tell the difference between when your brain has collapsed and .can't. do something and when you are refusing to do something willingly. IN THE END, IT'S ALL JUST A GUESSING GAME....DSM...GUESSING GAME....and I've noticed a few of the labels they have tagged on me, are because they THINK I should have that particular response to what happened to me...when it didn't apply. In my last counseling appointment ( i go only because I like this lady and she does energy work in her practice and that's hard to find in the mental health field) I confronted one of the diagnoses, which was major depressive disorder. I'm not depressed, period. It took meeting 5 criteria for the diagnosis, I only had 3. These counselors have never known what to do with me because of my background. What appauled me the most was how many of those doctors woud have prescribed anything i desired, any dosage I desired at the drop of a hat. I have such a sour taste in my mouth about the system...the system is just as traumatizing as my .ding.....anymore, I just can't justify participating, unless to be vocal about the 'experience' in hopes of true change.....which is how we connected ~ and that didn't pan out. This place it was suppssed to happen at, is a place called 'independent living centers' and are supposed to be there to help us 'disableds'...(interesting the word 'bled' is in the word disabled!!....i certainly feel like I've been bled dry!!! ;) and are more of a headache & hurdle than anything. Sometimes, I think I'm becoming too picky & persnickity. Sometimes, I think I'm just experienced. I so agree with what you said about 'them being the cause of our ptsd. I can't justify 'showing up' anymore. I did, gave them my best shot and allowed them to have their best shot at me....and almost always, the shrink ends up crying on my shoulder.

    After I'd worked in various places in the mental health field for quite some years, enuf to 'see' how it really 'is', I was watching something on the tv, some sitcom about a psychologist who had taken his teenage daughter to the movies. They were early & were about the only ones sitting there when 'he', the psychologist, passed gas and blamed it on his daughter. That scenario, right there, pretty much describes what they have to offer the world...and the mentality is what strikes me the most about the profession and their 'character'. Kinda funny, but you get my point.

    I've heard about the meditation theory as well. I do automatic writing as my meditation. It's about the level of relaxation the brain goes through and the part of the brain that is used during meditation that gets strengthened. I'm pretty sporadic with it, but I get it. All these little tricks & trappings they have for us, when energy work could solve the whole problem forever and pretty much instantly, instead of all this prancing around, wasting everyone's time. I'm so trying to get back on my bandwagon with alternative medicine as an option. Mostly, I need to decide if I'm going to stay here or move back home before I begin. I heard something yesterday that stuck: it was something about saying 'to heck with that, and making something that does work'. The inescapable void you speak of is something I cannot accept, or I guess, have decided that if this void is the only option, I at least want to decorate the walls of this void with my own photography. I don't remember picking this type of life.

    I totally get what you mention about getting off meds, and then who are we? I developed diabetes ( a gift from my mother, which describes our relationship ;) ) and take metformin. I am more pre-diabetic than diabetic and feel like I can control it with diet & exercise. Next appt with the doc, I'm telling him I want off it - they give me cholesterol & a small dosage blood pressure medication to protect my kidneys from the metformin. I am going to try oregon grape (berberine) instead if it turns out I do need something to help with the blood sugar issue. In my way of energy work, we believe that every affliction that can happen to the body, can be cured and we look at symptoms differently than the medical profession. We believe that every disease/ailment has a corresponding emotional source, as the cause of the ailment. With diabetes, the line of thought that brings on the disease is 'no sweetness left in life'. With my .ding., certainly I can see how that applies and am diligently working on making lemonade out of those lemons. So when the attitude changes, the body should change....and as I change this lack of sweetness ding, my blood sugar numbers are pretty much in the non-diabetic range. Iv'e done some sporadic energy work with my pancreas, but not a full blown session - because of the freeze/can't scenario. So that message is 'can't help myself'....so true, but I'm determined to turn it around.

    I don't know if you are familiar with this line of thought or not -- I looked up Lupis ~ you can try this on and see if it fits for insights & this would originate in childhood - a giving up. better to die than stand up for one's self. anger & punishment. They include an affirmation - I speak up for myself freely & easily. I claim my own power. I love & approve of myself. I am freee & safe. ?

    before this turns into a book, I better go meditate ;) Nice chatting with you Freckles...it's always such a breath of fresh air to communicate with someone who understands. Thank you for being on the planet.

    hours later - ps....i've been thinking about this post since I read your message. we are such a multi~colored group of individuals in this brain world...after the trauma & then dealing with a psychopathic stalker, my hair fell out on top of it all. For the past 4 years, I've been trying to get my hair to grow - i am NOT a short hair person. It was a quarter inch, if that on my head, the only thing left was new growth. Looked like I just came out of chemo. At that point, I knew my body thot it was getting ready to die and was shutting off non-detrimental .body services. It's still short - its' growing but so slowly. It was down to my bum before it fell out. It was the last straw - I knew I had to change my life dramatically (ha! with half a brain!!) and was so desperate to ditch this stalker and I did, with absolutely no .help. from authorities nor the .system. I've had to move every year for the past 5 years, but i'm safe now and I survived....and it's 10 years later...still no hair...hard not to see life as cruel sometimes, those of us who navigate the edge. Thank you for your message, I enjoy reading your thoughts.

  • Hello again.

    Really happy to read your new post.

    Just a quickie - until I get my brain working again. I'll get back to you with good manners soon !

    I have a saying I tell myself whenever I reel from dehumanizing labels - DSM or any kind really for that matter. 'They're just a pretext for depriving unconventional behavior of moral meaning and thus controlling it' - needless to say I didn't come up with this one myself. It originates from the early 20th century when psychotherapy was just starting up and people where thinking the exact same thoughts we're having now. It kind of acknowledges the personality types of psychologists back then too- controlling, undermining, wanting to be 'normal' fit in or conventional.

    Just another thought. Not to be taken too seriously (I've spent way too much time on the Lupus/illness support site) - but my first thought when you talked about your hair was - have you seen an endocrinologist ?

    Could there be a slim chance that part of the dissociation might be thyroid etc ? Prolonged anxiety can (?) stuff up the endocrine system. Might be worth a look at even if its to no avail.

    I utterly understand the urge toward energy work - something I've definitely lost my way on lately - but something I do take very seriously as our best hope for recovery. I've spent years messing with my medications to get the clearest mind set for meditation. (I think we are talking about the same thing - just different language ?) More when I get back to you soon) But please - and only if you're in the mood - tell me more about your energy work.

    And yep. There's a widely acknowledged 'theoretical' link between Lupus and childhood trauma among cPTSD specialists and many psychiatrists......as a group we share the same set of DNA stands that makes us vulnerable to developing Lupus, but what triggers the illness is still a mystery. Interesting that its more prevalent in races that are more prone to trauma and it mostly effects females. (I'm mostly Lilly white) but aboriginal people here get it in a more aggressive - deadly form. Over there its more common with First Nations people and African Americans.

    Similar with the Diabetes I think....... I'm really sorry you copped that one. I'm an experienced haggler when it comes navigating alternative medications - or alternative ways of taking medications when working with Doctors. If you need any advice on this one - let me know.

    Anyway.....I better plonk. (I've written more than I thought) And lots more to say in reaction to your last post. Soon I hope.

    XOX

  • Hi Freckles -- nice reading your post as well! I agree about the DSM....they had .pouting. listed at one time, and that told me all i needed to know about the BIG BOOK! A new counselor that I've just released because she doesn't have trauma care training, but at least incorporated energy work with her gig, which is rare! Traded in for a newly hired (because I complained loudly) counselor that HAS trauma care training and specialized in c-ptsd. I like her well enough so far, but am SO BURNED OUT on even trying, even showing up for more harm, not to mention the waste of time and I don't know how it is where you live, but here in Alaska, we LIVE for the summers and summer is just beginning. I've had non-stop appointments, sometimes 5 in a day for 10 years. I'm so done! I'm not even sure I'm going to go to this counselor....it's simply too late and I've done so much more on my own and when I look back on these 10 years, it's purely been a waste of time. I'm looking forward to hiking this summer and tearing up the trails on my bike.

    Thanks for the endocrine suggestion. I'd pondered it a few times, there is none where I live, but am seriously contemplating getting a referral for one and then having to fly into Anchorage. My hair is beginning to grow - finally. I think I'm going on the 4th year of almost no hair and I am so NOT a short hair person. They've done thyroid tests and they come out alright, altho I was diagnosed with underactive thyroid when I was young, tried the medication for a month and never took it again. I have all the symptoms of thyroid issues, but it doesn't show up on a test. Interesting what you mention about anxiety affecting the thyroid. I had a job on a cruise ship at one point and while I was getting my merchant marine card, I was hemoraging from menopausal issues. I also was dealing with adrenal burnout, unbeknownst to me. The doctors gave me a Huge Pad and that was it. They flew me home til i either bled out or quit bleeding. I promptly took some nettle tea (one cup!) and it stopped the bleeding, which came back a week later for a day and then stopped, never to return, these 12 years later.

    Energy work is difficult to explain. I've been doing it for so long, I can't describe it??? jeez! Long story short, it's an intelligent energy that pervades everything, all things...I usually use laying on of hands to effect issues, or we do long distance healings. I used to travel & teach all around the united states until I got burned out on all the traveling. I was working with some revolutionary stuff, so decided to take some time off and work it on myself and that was before all the traumas. After these traumas, I couldn't work on myself, which was the main reason I learned it in the first place. Have you heard of Reiki? They have good explanations of what energy work is. I taught Reiki for years as well. Only after some recovery in this past year, have I been able to work on myself again, with more improvement than anything from the 10 years of .counseling. And again, I mention the cranial-sacral therapy I've had since last year --- tremendous help and can't believe it's not used more. The one thing I hardly find mentioned anywhere is EMPATHY -- so often, what we experience is what we have picked up from someone else. Empathy is a huge part of my life, born empathic, much to my mothers dismay. There certainly are times when what we are dealing with, isn't even ours. When I look at all this .damage., and coming to understand that I'm highly empathic & thru all these traumas, to feel it all on this level, was more than my brain could handle and decided it was going to go live somewhere else. ;)

    Anything you could suggest regarding diabetes & alternative medications, I would highly appreciate. My numbers have been right around 100 for awhile, so last week I stopped taking metformin for a few days. My intention was to stop permanently, but it didn't work out that way. My numbers weren't bad, but higher than normally, so i began taking it again. I've done some research on berberine and as soon as I can find some, am going to try that instead of the metformin.

    Great hearing from you again, hope your lupus is being kind to you.

    Sky

  • Hello again Sky,

    Between travelling to Doctors and being a bit unwell I haven't been able to reply properly yet - and still cant with the detail I'd like. There's a lot I'd like to respond to with you're last posts.

    But I'll start with this. Having had what is essentially a slow burn terminal illness since the age of nine, - and also having the added bonus of being resuscitated when the body gave in to a car accident - I believe I do understand - at least from my subjective brain/spiritual combo view of the world - what you mean from energy work. I've had enough (what the medical profession call's near death experiences (I prefer the nice old fashioned - mystical experience's) to poke a stick at. (and I've had most of them while being perfectly alive - but with me they tend to occur in connection to death or illness trauma.

    When I try to explain these experiences it comes out very corny - but I'll try.

    I believe there is consciousness running through everyone and everything and this consciousness is infinite, eternal, profoundly nuanced (that ones hard to explain) but predominately - its main feature is unconditional love (that's the corny bit - I'm not christian so I was amazed at the sheer power of this aspect - it was pure empathy and love) What struck me the first time I had one of these experiences is the - power of the love - imagine the strongest feeling of love you've ever felt and multiply by at least 100. - probably more but there's only so much a human mind can perceive - And the 'unconditional' was what surprised me the most - as I was very good at feeling guilty for things that weren't' mine and constantly picking on myself - the experience stopped that almost emediately. Another aspect for me was a sense of time that's very different to the linear. While you're having these experiences - you understand totally, but when there over and you're stuck back in the human brain - its hard to explain. Time runs through everything and everyone as well, its eternal and profoundly interconnected - (Its times like this that I wish I was more poetic, but its like an infinite interconnected ball - and that's such a clumsy description. Eternity was its central feature and that's a wonderful feeling as well. Its almost like feeling everything at once - the past - the future - all in a microsecond. My experiences seem to be pretty time orientated. But from this time aspect I derived a great amount of comfort because I know this life is really just another micosecond - amid 'forever' and this life is not even that large in comparison to the eternity that we actually have. This has helped make it easier for me to get through the terrifying traumatic stuff - when I manage to remember its only a blip - something to learn from - something to take with you to the next 'realm' ? Another inadequate term that comes out corny - because the realm is here with us - we just cant pick up on it.

    So I do relate to the heightened sensitivity and perhaps being a little 'too' able to read whats going on in others mind - and being overwhelmed by this - because a hell of a lot of it is the very opposite of love & empathy - and when you've had a sort of 'profound' empathy and love experience - the contrast is a bit too hard to bare and can sometimes add to my maladjustment to the world.

    I don't have any healing skills, but after these experiences I have had episodes of both conscious and totally unconscious pre-cognition (after one of these experiences my family took to calling me 'bloody spooky' because I unconsciously & accidentally knew stuff - mostly benign things - that were going on behind the scenes) And for want of a better way of putting it - I've also had bouts of past cognition. (eg. I was at an exhibition with artifacts dating from Napoleonic era/ French revolution and walked past a uniform on display and in less than a microsecond picked up on (I'm assuming) the man who had worn the uniform. I picked up on his PTSD emotional state, some of what he saw - piles of the dead - and his despair at not ever being able to go home and sit happily with his family (by a huge white washed kitchen fireplace) again - due to his profound guilt. And he hated Napoleon.

    By now you're probably thinking I'm totally insane.

    These kind of experiences are rare, but I've always had - and this will sound crazy too - but a sense of very supple good & bad feelings in the landscape itself (that recently have become a bit pre-cognitive). The majority of my experiences with land (or sea) is usually pretty positive though.

    I live in (Dunkeld) Western Victoria - and there's a very ancient mountain range - The Grampians - or Gariwerd. - like most of the country really - geographically and culturally old. (What region do you live in ?)

    Even as a kid - I'd come across some places and just instinctively make a run for it. A few years ago I was meant to baby sit a farmlet with some horses and I literally drove into a wall of - what can only be described as really oppressive 'energy ?' (again don't really know how to put it into words) But to this day I don't know what the hell it was. I'd never experienced anything like it. I literally had to turn the car around to get my bearings - but I was obliged to drive into it and look after the horses. When I got up into that valley - a cousin who lives there - came to me in distress - pretty much claiming the same thing - "there's something wrong in the air - its really strange - what the hell's happening kind of thing - everyone's acting really strangely. And then she gradually couldn't contain herself and gradually became abusive over the course of the afternoon. There's a reason this area is a no go zone for Aboriginal people and I think its pretty ancient one.

    Anyway - I think if I share more of this stuff I'd have to private message you. If someone came up to me and said - I'd had these experiences (without having had them myself) I probably wouldn't believe them.

    I actually bought this mystical stuff up with a very DSMing psychologist once - and it confounded her. She knew I wasn't psychotic or delusional. She was left speechless really. Never spoke of it again after I mentioned it. Thankfully the first counselor I ever told was a Buddhist (and a non psychologist who hated the DSM manual with a passion - and at that stage I had no idea why) - but she helped me navigate these experiences from that perspective - told me they're more common than people think - its just the scientific age we live in that keeps people from sharing these experiences.

    Its telling that sometimes the most suitable counselors aren't psychologists. And I can also relate to becoming the counselor to the counselor. That happened to me one. (And when I ceased the relationship) she wrote to the people funding the councelling that I didn't need it any more......not a happy camper that one. But inter-personally I tend to end up counseling people and not get much in return. When I try and make things a bit more 50/50 it usually backfires.

    Anyway - I better stop for now. pooped.

    ps. Re: medications. I don't know much about alternative medicine, but I've had years of experience with - 'timing' and dosing of mind/body altering modern medications so's to have the clearest head I can for the day. With Lupus you have to play a balancing act with multiple medications to get the quality of life - and perceptual sensitivity that I value -even though its comes with a the disabling (and as you said - life restricting) PTSD state. Recently I've had to take a risk or two - but I do it with - the sometimes belligerent support of Doctors. They tell me the risks (pathology numbers) and - and the good ones work with me.

    To be honest, I recently went on a Blood Pressure medication that made me - probably ??? near perceptually normal. I didn't like it at all.

    I was able to socialize happily and comfortably, felt better about the world, stopped ruminating about negative things. But I eventually fell into a flat depression. I needed the uncomfortably vivid - sensitive sharp view of the world - its me. Even though I live in relative isolation - and as you said - boredom - I think its better. Sensitivity - if it doesn't crush you - can open you up to so many other things.

  • Hi Freckles - sorry for the late reply, life seems to get away with me sometimes as I’ve been trying to do too many things at once and am paying the price of not being able to do much of anything. I can’t count the times I thought maybe my brain was getting back to normal, whatever that is and as always, I’m wrong. At least I can say my brain is better, quite a bit better, but still doesn’t do well with stressors.

    Would you consider exchanging email addresses instead of posting our thoughts on this site? Mine is [email address removed by admin]

    I understand near death experiences, have had several myself. My life changed from day to night when I was nine as well. I know that when my dad & brother drowned, that I was dealing with severe ptsd then, when no one understood what ptsd was. My brain stayed collapsed until i was 16, barely being able to have a conversation with anyone I didn’t know. Makes me think about when the ptsd brain has it’s way with us, it is really just one more ‘near death’ experience, at least our brains think we are going to die. (I’m thinking of the Allan Schore video I mentioned previously, with what he says about our right brain collapsing and because of the hormone/cortisol/heart beat drop, our body think’s it better get ready to die) They have done alot of research on near death experiences, quite intriguing I always thought, and I’m like you, agreeing with more in the line of a mystical experience. In my life, the ‘corny’ is more commonplace than the ‘normal’, whatever that is. The more I watch this world, and the more I understand what is going on in my brain, the more I wonder what normal is...normal sure does seem to have an ignorance about it that I don’t find in people who deal with these types of issues. I also understand about time oriented experiences. I’ve got one coming up the end of this month. It used to wipe me out for the whole summer, but after 36 years, it’s lessened considerably, but I never know from year to year how it’s going to affect me.

    I also agree with your line of thought regarding this life just being a blip in the overall scheme of things. It sure is a weird blip at times. I’ve come to the conclusion I’m allergic to idiots ;) and the world seems full of them most days. When you spoke about ‘being able to read other’s minds’, are you familiar with the term empathy? I studied it many years ago because it applied to me and alot of the people I was teaching. In coming to understand there’s trauma for people and there’s trauma for empathic people was quite a learn for me. Whatever this is with my brain, it’s made me way more empathic than I used to be, to the point I’m picking up diseases from others - the correlations are too many to ignore. To go thru what I went thru, being highly empathic on top of it, was more than a double whammy. It seems like these empathic senses are sharper than ever...and they even have something that correlates in the DSM called ‘Sensory Processing Disorder’. When I do research into empathy & trauma, it all makes more sense than ptsd, altho I do not discredit the ptsd label.

    I heard someone once explain time like it is gears intermeshing with one another. I’ve also lived in a world that has been hard to explain to others and at times, it has set me almost in a world of my own. It’s a long story, but one that is full of rich substance, just the way I like it ;) In my ponderings, it seems as tho the world is turning into a ptsd world, and the world is still in caveman days. The things they’ve been trained in, doesn’t apply to us, unless they’ve had specific trauma care training.

    A few weeks ago, I began seeing a specifically trauma trained counselor at the place that has hurt me the most in this whole experience. I have panic attacks just trying to go there for ‘help’ and they hired her last January after I had a conversation with the new director ~ this place can’t keep staff. AND as always, they always talk to me like I’m the counselor for their own issues....been like that since day one. But I like her and she’s just beginning to understand the reputation this place has and in a small town, our choices are always severely limited. I talked to her about empathy as a label and she gets it and has at least a baseline understand of things metaphysical, which is my speciality, so it’s a better fit than most. I think all my hope about getting some insight/assistance from a counselor is gone. Why would God put us in a situation that the outside world does not understand, does not want to understand, does not care to understand...and we have to navigate their world. In hindsight, cptsd has made me a better person in many ways, albeit painfully so. If being ‘normal’ again means I’m like ‘them’, I think I’ll pass. I think I’m more vocal than alot of ptsd people, but what good does it do? Because of my background & direct experience, i can voice what we need...but it doesn’t do any good. I’m close to putting down the label and just going about life, in this otherly way of being, that didn’t seem normal for so many years of living like this, but because it has been YEARS, it IS normal now. Same as you, my profound experiences happen with land and water, and i am a photography buff and try to have a camera in hand. Photography has been a godsend thru this ptsd ordeal over the years....and that also turned into a spiritual story. Have you ever heard of or seen orbs?

    In rereading what you’d written about being empathic, being able to sense & know, and thought ‘you weren’t a healer’...have you ever tried just laying your hands on the part of your body where the lupus is located? When healing energy runs through your body, you oftentimes get hot, and notice a ‘heat’ coming thru your hands. Everyone has the ability actually, it’s just in learning how to use it....or placing your hands on both sides of your head and letting the energy run? I’ve been doing healing work for 40 years, but when the murders happened, I haven’t been able to do it...can’t help myself. It’s shifted this past year, and I give the cranial sacral work credit for that. I have done a few things that have made a significant difference and do a little bit each morning these days. My hopes are to develop something that will help us with the ptsd label....some kind of relief, if not total healing. Instead of punching a clock, I will work (as usual) for myself. It’s about the only thing that interests me...the only thing that made it through the onslaught of ptsd issues.

    I live in Juneau, Alaska, the southeast region of Alaska, with two huge gorgeous mountains outside my window, complete with numerous waterfalls coming down the sides of the mountains - I’ve counted 17 at times (depends on rain & snow melt). Alaska is the northern most state in the united states, next door to russia....like being on another planet in so many ways. The beauty here is spectacular. I live alongside the ocean, with whales & dolphins traveling through...and way too many cruise ships...and did i mention the bears -- lots of bears and yowie. When you mentioned your experience when you were taking care of the horses, with the energy brick wall, made me think of yowie/sasquatch. Some people consider the subject ‘bonkers’, but it’s been real in my life.

    I have a book I used to use in my healing work called ‘heal your body’ by louise hay...it speaks of all diseases & sometimes injuries being root caused by feelings we have in side....i looked up lupus, it said: LUPUS: A GIVING UP. BETTER TO DIE THAN STAND UP FOR ONE’S SELF. ANGER & PUNISHMENT. Does that fit for you? I have found the ‘reasons’ for the diseases have been pretty accurate. The one for diabetes says - no sweetness left in life...for me, after the murders, it sure seemed that way and when I found myself with the diabetes label as well, I began to work on bringing sweetness back into my life to attempt a cure. My diabetic blood sugar numbers are really low, almost non-diabetic. I stopped taking the metformin last month because I thought I could manage without it and ended up taking it again. I’m going to change to Berberine (herbal) as soon as I can find some, instead of taking the metformin. My grandmother was a great Danish lady (came over from Denmark) and began my healing teachings when I was young and is something that has stayed with me all my life, of which I later went on to develop. Most times, this empathy feels more like a curse than a help. Needless to say, I quit doing healing work 10 years ago with the seriousness of the brain collapsing either over stress and usually because of the stress of dealing with idiots ;) sounds crazy! I seem to have developed into ‘Allergic to Idiots Syndrome’ ;) The normal world expects us to be tolerant towards these idiots, when tolerance to further harm is no longer wired into our brains. We progress to becoming proficient in navigating in the twilight zone of some forgotten planet.

    I got a good chuckle about what you said about blood pressure medicine making you feel normal, and not liking it at all ;) I get it! Too bad we’re a half a world apart my friend, I would love to sit across the table and giggle over the ludicrousness of it all over a cup of tea ;)

    Sky

  • Hi Freckles - sorry for the late reply, life seems to get away with me sometimes as I’ve been trying to do too many things at once and am paying the price of not being able to do much of anything. I can’t count the times I thought maybe my brain was getting back to normal, whatever that is and as always, I’m wrong. At least I can say my brain is better, quite a bit better, but still doesn’t do well with stressors.

    Would you consider exchanging email addresses instead of posting our thoughts on this site? or when I tried to send this the first time, Nathalie said we can’t put our email addresses in the posts, but we can send private message with it -- i haven’t figured out how to do private messages yet.

    I understand near death experiences, have had several myself. My life changed from day to night when I was nine as well. I know that when my dad & brother drowned, that I was dealing with severe ptsd then, when no one understood what ptsd was. My brain stayed collapsed until i was 16, barely being able to have a conversation with anyone I didn’t know. Makes me think about when the ptsd brain has it’s way with us, it is really just one more ‘near death’ experience, at least our brains think we are going to die. (I’m thinking of the Allan Schore video I mentioned previously, with what he says about our right brain collapsing and because of the hormone/cortisol/heart beat drop, our body think’s it better get ready to die) They have done alot of research on near death experiences, quite intriguing I always thought, and I’m like you, agreeing with more in the line of a mystical experience. In my life, the ‘corny’ is more commonplace than the ‘normal’, whatever that is. The more I watch this world, and the more I understand what is going on in my brain, the more I wonder what normal is...normal sure does seem to have an ignorance about it that I don’t find in people who deal with these types of issues. I also understand about time oriented experiences. I’ve got one coming up the end of this month. It used to wipe me out for the whole summer, but after 36 years, it’s lessened considerably, but I never know from year to year how it’s going to affect me.

    I also agree with your line of thought regarding this life just being a blip in the overall scheme of things. It sure is a weird blip at times. I’ve come to the conclusion I’m allergic to idiots ;) and the world seems full of them most days. When you spoke about ‘being able to read other’s minds’, are you familiar with the term empathy? I studied it many years ago because it applied to me and alot of the people I was teaching. In coming to understand there’s trauma for people and there’s trauma for empathic people was quite a learn for me. Whatever this is with my brain, it’s made me way more empathic than I used to be, to the point I’m picking up diseases from others - the correlations are too many to ignore. To go thru what I went thru, being highly empathic on top of it, was more than a double whammy. It seems like these empathic senses are sharper than ever...and they even have something that correlates in the DSM called ‘Sensory Processing Disorder’. When I do research into empathy & trauma, it all makes more sense than ptsd, altho I do not discredit the ptsd label.

    I heard someone once explain time like it is gears intermeshing with one another. I’ve also lived in a world that has been hard to explain to others and at times, it has set me almost in a world of my own. It’s a long story, but one that is full of rich substance, just the way I like it ;) In my ponderings, it seems as tho the world is turning into a ptsd world, and the world is still in caveman days. The things they’ve been trained in, doesn’t apply to us, unless they’ve had specific trauma care training.

    A few weeks ago, I began seeing a specifically trauma trained counselor at the place that has hurt me the most in this whole experience. I have panic attacks just trying to go there for ‘help’ and they hired her last January after I had a conversation with the new director ~ this place can’t keep staff. AND as always, they always talk to me like I’m the counselor for their own issues....been like that since day one. But I like her and she’s just beginning to understand the reputation this place has and in a small town, our choices are always severely limited. I talked to her about empathy as a label and she gets it and has at least a baseline understand of things metaphysical, which is my speciality, so it’s a better fit than most. I think all my hope about getting some insight/assistance from a counselor is gone. Why would God put us in a situation that the outside world does not understand, does not want to understand, does not care to understand...and we have to navigate their world. In hindsight, cptsd has made me a better person in many ways, albeit painfully so. If being ‘normal’ again means I’m like ‘them’, I think I’ll pass. I think I’m more vocal than alot of ptsd people, but what good does it do? Because of my background & direct experience, i can voice what we need...but it doesn’t do any good. I’m close to putting down the label and just going about life, in this otherly way of being, that didn’t seem normal for so many years of living like this, but because it has been YEARS, it IS normal now. Same as you, my profound experiences happen with land and water, and i am a photography buff and try to have a camera in hand. Photography has been a godsend thru this ptsd ordeal over the years....and that also turned into a spiritual story. Have you ever heard of or seen orbs?

    In rereading what you’d written about being empathic, being able to sense & know, and thought ‘you weren’t a healer’...have you ever tried just laying your hands on the part of your body where the lupus is located? When healing energy runs through your body, you oftentimes get hot, and notice a ‘heat’ coming thru your hands. Everyone has the ability actually, it’s just in learning how to use it....or placing your hands on both sides of your head and letting the energy run? I’ve been doing healing work for 40 years, but when the murders happened, I haven’t been able to do it...can’t help myself. It’s shifted this past year, and I give the cranial sacral work credit for that. I have done a few things that have made a significant difference and do a little bit each morning these days. My hopes are to develop something that will help us with the ptsd label....some kind of relief, if not total healing. Instead of punching a clock, I will work (as usual) for myself. It’s about the only thing that interests me...the only thing that made it through the onslaught of ptsd issues.

    I live in Juneau, Alaska, the southeast region of Alaska, with two huge gorgeous mountains outside my window, complete with numerous waterfalls coming down the sides of the mountains - I’ve counted 17 at times (depends on rain & snow melt). Alaska is the northern most state in the united states, next door to russia....like being on another planet in so many ways. The beauty here is spectacular. I live alongside the ocean, with whales & dolphins traveling through...and way too many cruise ships...and did i mention the bears -- lots of bears and yowie. When you mentioned your experience when you were taking care of the horses, with the energy brick wall, made me think of yowie/sasquatch. Some people consider the subject ‘bonkers’, but it’s been real in my life.

    I have a book I used to use in my healing work called ‘heal your body’ by louise hay...it speaks of all diseases & sometimes injuries being root caused by feelings we have in side....i looked up lupus, it said: LUPUS: A GIVING UP. BETTER TO DIE THAN STAND UP FOR ONE’S SELF. ANGER & PUNISHMENT. Does that fit for you? I have found the ‘reasons’ for the diseases have been pretty accurate. The one for diabetes says - no sweetness left in life...for me, after the murders, it sure seemed that way and when I found myself with the diabetes label as well, I began to work on bringing sweetness back into my life to attempt a cure. My diabetic blood sugar numbers are really low, almost non-diabetic. I stopped taking the metformin last month because I thought I could manage without it and ended up taking it again. I’m going to change to Berberine (herbal) as soon as I can find some, instead of taking the metformin. My grandmother was a great Danish lady (came over from Denmark) and began my healing teachings when I was young and is something that has stayed with me all my life, of which I later went on to develop. Most times, this empathy feels more like a curse than a help. Needless to say, I quit doing healing work 10 years ago with the seriousness of the brain collapsing either over stress and usually because of the stress of dealing with idiots ;) sounds crazy! I seem to have developed into ‘Allergic to Idiots Syndrome’ ;) The normal world expects us to be tolerant towards these idiots, when tolerance to further harm is no longer wired into our brains. We progress to becoming proficient in navigating in the twilight zone of some forgotten planet.

    I got a good chuckle about what you said about blood pressure medicine making you feel normal, and not liking it at all ;) I get it! Too bad we’re a half a world apart my friend, I would love to sit across the table and giggle over the ludicrousness of it all over a cup of tea ;)

    Sky

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