Wednesday, June 29, 2016

What is CPTSD?

Many of us are dealing with not just PTSD, but more specifically, Complex PTSD, or CPTSD. People insidiously on the autism and/or NLD spectrums are prone to developing CPTSD, though CPTSD can affect anyone.

What people who are highly sensitive and/or with late diagnosed ASCs have gone through, all those years being unrecognized, may cause all these layers to develop. Unfortunately this often masks the core autistic condition, as we know, and so it can get missed, when a "comorbid" mental health condition upstages it.

CPTSD is common in autistic people who didn't get help and have been through prolonged exposure to trauma, abuse and hardship. It's important to note that not being identified correctly, as someone who diverges from being neurologically typical in developing, can create trauma in itself. In the case of somebody on the autistic spectrum, but unrecognized as being, trauma can indeed occur from the pressure to 'perform' as normal, using a lot of energy and ways unnatural to one's way of being, and some of the time making mistakes in this, which results in being judged and treated badly. This beats a person down after awhile, causing low self esteem and often an inherent feeling that they are a broken and/or bad person in some way. 

It's complex, and may have features of a few different mental health issues such as anxiety and/or panic, rapid cycling bipolar, borderline personality-like mood/social affects/poor coping reactions, major depression, dysthymia, dissociation, agoraphobia, obsessive compulsive, eating disorder/body image issues,  substance misuse and addiction issues, and even some more superficially presenting features of other cluster B and C personality disorders. 

This is especially so in earlier stages/higher severities of the CPTSD, so when a person has not worked on themselves much, or is actively being very stressed, thus being re-triggered, etc. It's important to note the "features of" (due to CPTSD) is different than actually have the full on disorder. 

Sadly, there is a current lack of compassion and awareness of CPTSD (especially in autistic people) in the mental health systems. Instead there is judgement, which not only makes it really hard for people to recover, but makes the trauma worse in the way of an ugly and vicious loop. Sadly, this can eventually result in tragic consequences; such as addictions and other poor coping that does severe damage, the development of chronic  and debilitating physical illness, and sometimes even suicide or accidental overdoses. Clinicians, and society, badly need to be more complex trauma aware, and compassionate too. 

Clinicians need to become more skilled at identifying autism in these cases, and helping those with CPTSD. Many are out there in this position, and only a fraction of them are identified. An even smaller fraction of them will be able to receive adequate service/help.

What can we do? Only what we can: Keep speaking out about it, but also balance with self care and recovery. If we can't rely on outside help to help us, we can still find some kind of faith, work through it using outlets like art, journalling, accepting it/turning it around/channeling it too. We can support each other in this. 

-Rosie G. 

On expressive language, communication and "personality divergence"

*Disclaimer A*

June 28, 2016

I don't know whether other Neurodivergent folks may experience the following, but here are some of my thoughts/reflections:

My communication styles between the videos and the blogs are a bit different I think. I don't know who may notice, or if they may notice only a little, or subconsciously, but, this may come off as strange to people. It may then contribute to the forming of negative judgements.

I believe that this "communication divergence", and a few other aspects of it, is what may cause my character to be misinterpreted and judged. This has been hurtful, but I can't let it hurt me anymore. I know in my heart that it's essentially born out of a lack of understanding for autistic people and how they may communicate. What can I do? I can share my take on it, based on and including my own experience/s, in order to hopefully clarify. By the way, my take will definitely be more relatable to autistic people who are female, though some males may relate as well. Okay, here it goes...

I'm not the only one who may be prone to character misinterpretation. Such is the case with many who are autistic or neurologically divergent in some other ways (highly sensitive, ADD/ADHD, NLD, general neurodivergence..) This is particularly so if one is hyperlexic, meaning, able to present with very strong language abilities (even if they are quite significantly "further along on the spectrum" for lack of better terms...and btw I think I'm in that category myself... Huge discrepancies.)

Neurodivergent people's (especially autistic) communication abilities go up and down, along with their energy and wellness levels, and stress. Sometimes they are more articulate than other times, and in this, they may seem to others, who don't understand, as “inconsistent." This could then be seen as something negative, like being deceptive or pathological in some way (at least in my experience - maybe I've been exposed to too many ignorant and judgemental people?)

Also, communication doesn't come naturally to us, so we may develop different “styles” of expressing for different types of communication (more below.) These social communication idiosyncrasies can be subtle, but it sometimes weirds people out to think we are crazy, or that we have a personality problem or something. 

Again, this could be a subconscious thing, and it depends on the person, and how judgemental they are. It depends on what their background and outlook on life is I guess. But this is, in general, why many autistic/neurodivergent people are mistaken for being mentally unwell and/or personality disordered in some way, when it's not necessarily so. 

The line between "mentally unhealthy because they're negatively affected" vs. "that's just the way they are and it's ok" seems blurred. 

Well, most of us are not, especially not at the core, "personality disordered" and such - though we may display superficial traits of what may look like personality disorder traits to those who don't understand the nature of autistic spectrum divergences (especially when trying to "speak NT" the only language available to speak, in speech and on Earth!) .. This is especially so when we are depressed and/or very traumatized. This is even more so for autistic people with CPTSD. Unfortunately, many of us have CPTSD. (What is CPTSD?)

Many of us were not properly diagnosed in childhood as we should have been, and this was injurious to our proper, healthy development. We were often forced to conform in ways unnatural to us, to try and “learn how to act more normal” and this tends to create some identity confusion, as well as coping presentations that be easily misunderstood. This alone can unfortunately develop into CPTSD, with various (depending on the person) mental health condition traits. 

However, when one realizes they are autistic/neurodivergent, one then may then realize what it's all about, learn to understand how and why, and thus heal some (or most) of this. We can then be merely “personality divergent" because using the word disorder should always equate with answering "yes" to the "does the behaviour hurt others and/or themselves?"...

Being "Personality Divergent", if I can call it that, really can't be helped when one is neurologically divergent. Again, this is different from "disordered" which is a state that is more dysfunctional, harmful to oneself and others, and is due to lack of mental/spiritual health. Being "Personality Divergent" is ok, and should be granted understanding and acceptance, because it's benevolent - it's not harmful, and is just the way one is, when they are "wired differently." 

Some people, especially auties, are just very multi-faceted and complex people, and this is how they socially cope, and also how they coped with several happenings (ie. adjustments) which doesn't necessarily mean they are “sinister" though they are complex ... I'm one of these people for sure. 

Also, neurodivergent people will inevitably experience affects of their divergent cognition. So, they will sometimes emotionally and cognitively cope in ways that cannot be helped, ie. shutdowns, meltdowns, stimming, and having different needs and limits. 

As touched on above, many of us will not only have stronger communication one day than the next, but also we may have different communication styles between different forms of communication. There may be stark differences and discrepancies between things like writing and speech. 

My blogs are often (though not always) more of a reflective diary-style. They express my deeper, more introspective viewpoints, some of which are kind of personal (to an extent.) I find it easier to express more of my feelings in writing, because I am self conscious about about the reactions I get when people see the differences in the way that I express my emotions in person. Because of my expressive language, my true (key word "true" - not scripted to seem "more normal") emotional expressions seem more childlike and I often lose my ability to have strong language in my speaking, when I am too emotionally overwhelmed. Essentially I can get looked at and and treated like a “crazy person” and even accused of lying or being melodramatic. This has been really hurtful.

Due to the above, I guess my videos are usually more professional but casual, and “lighter” in demeanor. Well, I don't know how to describe communications' styles are a bit different, depending on the form of communication. 

Overall I usually guard my innermost feelings. My viewpoints and thoughts are externalized more formally (albeit with a casual and personable feel) and articulated interactively. Though I seem personable, I'm usually less actually personal in my display of my core feelings. This is often so when I'm in person too. I don't like to be seen as vulnerable and plus, when I'm vulnerable. I prefer to withdraw when my communication abilities go way down. That's another thing.

I do have a hard time with this, and some who don't know me very well, and have not yet seen me in an emotional moment, have accused me of things like being "narcissistic" seeming, and not having feelings. This was very hurtful and very untrue. I'm very highly sensitive and empathic internally, but in order to cope with that, I tend to “rule with intellect” and keep my deepest emotions under wraps. It doesn't mean I don't have them. It's actually the total opposite...

I privately suffer from overwhelming emotions sometimes, which over the years I've gotten better at coping with (because I've had to.) However, I know many people, autistic adults especially, but also just anyone (especially those who are enduring heavy hardships, and/or are highly sensitive and/or may have PTSD) can relate.

Although I've been through a lot and am dealing with issues close to home, I'm a tough person, and when I've opened up I've been hurt. So I find it difficult to show vulnerability publicly for these reasons, but I also feel like I shouldn't have to in order for people to “believe how hard it is/has been.” Some things are meant to be personal.

I'm going through hell with my health at this time. Of course I experience rough days and moments of overwhelming emotions, shutdowns and even the occasional meltdown (autistic adults get more shut downs then meltdowns, unless the triggers are more intense.) I experience this much more so than (I think) people realize (unless I'm not as good at hiding it as I think I am, lol.) I usually prefer to censor/keep more private, regarding the very details of what I go through, which have been really intense considering how challenging my health and life situation has been the past few years. 

Again, with being autistic, I express my deepest emotions in a more child-like way than people are used to seeing, and it may alarm people. I also shield my children from the majority of this, which can be very hard, but it must be done.

An important point about this, last but not least, is that when I'm very stressed and upset I lose my ability to articulate well, if at all. When I'm in “meltdown mode” , due to selective mutism, I am definitely not wanting people to see that. Basically I can verbally shut down when things are maxing out in terms of being too overwhelming. 

It's always been hardest for me to find words for feelings, though sometimes when I can, it's in the form of poetry. Overall though, I tend to not present things publicly in this state.This doesn't mean I'm lying and faking about my suffering and hardships though, which is what some people who see me in “high-functioning” (for lack of a better term) and articulate states have jumped to the conclusion of. I'm just censoring what I present to the public, for many reasons. First of all, this is my personal life, second of all, it's hard to adequately express, and lastly; I don't think it's helpful to others, to display it all out there. 

I'm advocating, so I want to strive towards being helpful to people, more than being a downer. However, I realize that sometimes it's ok to show vulnerability a bit, and sometimes people must have an outlet or a total time out, which is of course done privately. 

Overall, and especially at present time, I try to keep things censored and at least somewhat professional sounding, in terms of what I put out there. This is hard to do when I am often addressing matters close to home, and perhaps I have at times tried and failed... but it can and must be done, I feel. I strive for this, though I am autistic, divergent, and recovering from CPTSD, and these parts can't be entirely helped. 

Geez .. I hope these words make sense.

-Rosie G. 

Monday, June 27, 2016

Painful picture

*Disclaimer A*

June 24 2015 (*note, a bit personal and heavy)

This is cute n sweet picture. My childrens' faces are sweet, and they are and were shielded from anything other than that sweetness.

But, this picture reminds me of pain, like many pictures do. This was in 2012. I was really sick in that picture, and so am I now, but this was when the illness first started really feeling like it was "attacking" me, which was weird. I suddenly got really sick that summer and turned white with purple around the eyes. I was really weak. I wonder if mitochondria reacts to severe emotional upset. This was following my autism diagnosis.

It was an extremely intense process that went into the past, rehashing it all through the lense of "oh all that awful stuff happened to you, and you did and said all those apparently horribly stupid and wrong things, because you were developmentally disabled and didn't fully understand, not because you were a horrible mis-behaven female teenage brat with nothing but mere borderline personality, but the "borderline" ish features were basically autism and PTSD induced depression/anxiety/confusion met with zero compassionate help and understand, but rather callousness and judgement, instead. More abuse. That's what it felt like.

Then, instead of being treated like a delinquent you should have been registered as needing a support worker through CLBC and home-share program, because you're bona fide disabled enough to qualify for all that" 

This is really personal but I'll just say this bit; I ended up in the hospital the day I was diagnosed, because I just freaked wholly. My body, mind and spirit. My brain couldn't handle all the conflicting feelings and flashing memories of being an unrecognized disabled kid being treated like a criminal, a horrible bad girl and worse than a dog. I was begging services for help while being abused by people and yet not fully aware of it. and instead of the services helping me with those abusive people who were taking me for a harsh ride and some - they further abused me ie. wrote horrible things about me in the files.

All of this contributed to why, when I fell really ill in my mid 20's, I was not met with medical help. They brought out the old records (which were erroneous) and further blacklisted me. I guess this was easier, rather than acknowledging that now, since I am now properly diagnosed with autism (and I fought for that like a court case)- that maybe those old reports are wrong and that they failed me because they didn't understand female autistic traits, even though they were right there in front of them.

They failed at their jobs to identify me as a disabled young woman being abused and messed around with by people, and being lost in terms of social navigation. To boot, I was physically compromised by weakness, pain and many (then more minor, but still challenging) body dysfunctions, because I've always had EDS. It's something one is born with. 

So then they further failed at their jobs re: not admitting that they horribly messed up regarding this young woman here, who could have died in the places she ended up sometimes, but survived anyway. My husband found me in such circumstances at first, so he knows. People who know me well know, and can vouch for me, though I don't need to disclose details for the moment, other than to say that I'm a survivor and not unscathed.

It's not an exaggeration, and maybe one day I'll tell the full story, if I'm around to, but it is physiologically stressful and re-triggering to me right now and my health isn't up for it. In this it's hard to find words for. I don't actually think in words first. Anyways, point is that when I see this picture now, this is what I think of. 

Autism diagnosis. I needed it but it was a very painful process. The realization of it all, in this flash of epiphany kind of made me almost break. I'm glad it didn't that day, but I think it did something to my body, as all that stuff did...and this was before the medical systems' attempt to try and blacklist me from help for my EDS. Yes this did happen, though there has been some degree of "backing off" now that I'm really sick. I have shared about what happened with that too. Yes it is an "unbelievable" story, all of it, my story. However "they" made one big and nasty mistake (if that's what it was): My story is actually real.

-Rosie G. 

Friday, June 17, 2016

Hyperlexic autistic - what's that? It's everywhere

*Disclaimer A*

Can one have “niche-y” articulation precocities (similar to savantism), while also having particular but sometimes very frustratingly debilitating communication differences and disabilities? I can..because I’m on the autistic spectrum, with hyperlexia. 

Hyperlexia is a condition of verbal precocity seen in many on the spectrum specifically, but it's hugely under recognized, for what it is anyway. This creates detrimental overestimations and underestimations of a persons strengths and challenges. 

The discrepancies created by autism with hyperlexia can bring unique gifts and niche talents, but also painful paradoxes. It’s hard to be a person like this. It’s not an easy life, it's an often misunderstood life, it can be idealized, or demeaned. Mental health can come into play. Disabilities and lack of recognition for them, when they're masked by gifts, can tragically hold a person back. 

There are gifts, immense gifts, and due to the above, others tend to benefit from them more than the person themselves. We can note that when we think of tragic and eccentric famous people, who made many others happy but hurt so bad themselves that sometimes they came to early demise, in one way or another. I wish that’d change though ...

There's much to be said about it - and it could be studied. Should be. So many people would be prevented from getting hurt, and be identified properly rather than character-pathologized (until some even manifest that pathologization.)

Yes, some autistic people are socially motivated, and thus partly extroverted, though they still have neurological limits and need to shut down. Many just cannot understand that, and the person (especially if they don’t realize they’re autistic) doesn’t understand it either. People are hard on them, they’re hard on themselves. They set their bars too high, they may develop self injurious coping to go past their limits. Alcoholisms' are huge one, albeit under recognized  

Yes, though some autistic people are very challenged with language, some autistic people are profoundly gifted with words and niche areas of language , they're verbose, brilliantly articulate at times .. though this is often limited to in the context of high interest areas and niche talents/skills. 

Yes, some autistic people electively train to become language/communication/performance experts - they take up higher education or vocational training, they make it a career. But when their day is done they need to shut down, and it’s easy to get overwhelmed. 

The funny thing is, these people are not thought of as autistic, they’re thought of as quirky, eccentric, gifted, crazy, awful, obnoxious, etc. 

Have you ever met someone, or observed a famous persona, in this light? Does “Oh, they’re autistic” come to mind? Probably not. But what if the truth is that they are?

Either we change language or shift paradigms. Or both. 

Hyperlexic autistic. What's that? It's everywhere. 

-Rosie G.

Wednesday, June 1, 2016

Goodbye EDS awarness month 2016

Inside Out Reflections

*Disclaimer A*

"I really need to stop isolating myself and find some healthy social time. Yeah, there's a challenge to that when you're a mom but still, other moms' do it, so it can't be an excuse. It's about my own confidence and I'll put it out there; I'm tired of that holding me back!!"

Wow. In hindsight, this above post I made back in 2011, the year I started the A Girl Outside the Box blog, amazes me. I was quite shockingly out of touch with the real reasons as to why I couldn't get "out there" and "stop isolating myself." Sadly, this was due to having to live up to certain standards unnatural to me (in spite of enjoying it in small doses), coping by disassociation, and being born feeling generally weaker and unwell (thus having no baseline of "well" to compare it to.)

The real reasons were (and still are) that I was born autistic and with Ehlers-danlos syndrome, and I was falling ill with complex chronic health complications due to the latter. The energy I required to socially adapt and perform "out there", which, although I had become good at, was a lot more because I'm autistic, was diminishing. This was the main thing which brought me to the autism realization and diagnosis. I just couldn't do it like I used to (socially perform.) 

The worst part about this was when it related to dealing with doctors and trying to get medical help. I was still able to be hyperlexic oftentimes, but my expressive language execution and cognitive ability to functionally communicate (ie. not repeat myself too much, not perseverate, word things in an order/context that can be commonly understood) had worsened. It had gone from charmingly quirky to "bad TV actor" which "they" then perceived as sinister and deceptive. Sometimes, when I was more unwell and stressed, it even looked like a mental illness. 

So then, they perceived me as both positively mentally ill and personality disordered - in fact the key component here is mis-percieving my attempts to communicate as manipulative and unstable. There are many good reasons why people like me are misperceived that way, which I've written about before. But anyways, overall, I was often perceived as a threat, and then I was seen through a "less than a person, crazy b*tch" lense. So much of what I tried to express and say would fall on biased eyes and ears. At first and most especially, this came from non-autistic people (however, read ahead.)

Adding a most putrid cherry on top, I picked up on their negative, cynical, and narrow minded, mental-filter-rooted perceptions, because I am hyper intuitive. I can't read faces very well, but to compensate I have some strong ESP. In addition, people would sometimes tell me outright, or strongly allude to, what their perceptions were. Sometimes it was because I'd insist on knowing. This, sadly, often confirmed what I was already feeling and sensing. 

Hearing or picking up on the things I did hurt me, demeaned me and ultimately had somewhat of a gaslighting affect on me. How could I learn to like myself, even though I know knew I'm autistic, when I'm feeling such disdain from these people. Such refusal to accept me. They just wouldn't accept me for me! I was confused. My brain was saying "I want to be accepted as me, I want to believe I deserve that, I want to like myself, even love myself - as the real me, paint stripped and all, being accepted. But this is being disliked. Why am I un-likable, un-lovable - maybe there is a real reason. Is there?? Am I a bad person. Am I bad? Am I?" 

In spite of trying to present as strong, and proud of being autistic on the internet - even cocky thanks to false pride - (within the autistic communities especially) there was a deep pain that gnawed inside of me. I was somewhat genuinely proud in ways, and wanting to celebrate my divergence, but I was also confused, torn and still hollow deeper inside. This quietly festered like a chronic infection, weighing me down, holding me back, and in the way classic gas lighting does; it set me up to eventually manifest what would only confirm their negative perceptions. My reactions to the ignorance, inacceptance, frank abuse and further gaslighting raged like fire in a vicious cycle. It could never be fully put out because, well, it kept being (no pun intended) "gaslit." 

The negative perceptions were especially confirmed by my angry "us and them" attitude bathed in the idea of "Autistics vs. Neurotypicals." I truly believed, at least in the beginning, that this notion gave me power and strength. It made me feel better, at least on the surface. I thought it was a shield, but instead it was a sword. It was a sword that would only provoke jabs from other swords which would then have me be a walking wounded solider. 

Most sobering of all, those jabs began to come from others in the autistic community. That's right, the community I had grown to be so powerfully proud to be a part of, to rejoice-fully rant and rave in, began spraying me back with my own stubborn, secretly self hating, anti-neurotypical/anti-"them", angry, impatient, intolerant, dissatisfied, toxic, internalized ableist, depressed, anxious, even at times paranoid "pepper spray." Why? Well it was theirs too. Many of us beheld this bitter spray, and we began spraying each other with it. It was a rude, hurtful and heartbreaking awakening. 

At first, I reacted with the same kind of thinking that had created the "spray." It took me a massive health crisis involving getting sick at a predominantly neuro-elite thinking based event, and the entire drawn out aftermath of that, for me to wake up and smell the stench of that spray. I then put my bottle of it down, and away, and watched without it in hand, as I saw the spraying of each other within the community unfold. I then began really isolating myself from the community, I was hurt, wary and untrusting. I imagined that if I’d post any of my work in an autistic group, some anti-fans of mine were sure to see it and start a toxic, hateful and hurtful comment thread about me. Thought now I need to let this go, and I've worked on that a lot.

The worst effect of my diminished ability to "pass for NT" was being met with inacceptance at a time where I was falling physically ill, and in this desperate to put out my fire of inner demons; to emotionally heal so that it wouldn't take a toll on my increasingly sensitive body. Instead, I was met with what had me feeling like I could only become somewhat of a monster, to defend myself against the monster. This was the last thing I needed.

In this, I remained on this line where they (non autistics) didn't know what to make of me - so they placed me in dark, cynical categories. Obtaining an autism diagnosis didn't completely fix things as I had hoped it would, and sometimes even hurt me further, because of that awful skepticism. 

Again, it was due to ignorance over how a bright and verbal female autistic may socially, expressively and linguistically present… and as I said, even people in the autistic community began judging each other in that way. They were (and still are) engaging in wretched contests over "whose really autistic, and whose just an asshole." I realize now that we were all being affected and turning on each other, just like a bunch of active alcoholics - but nevertheless and from all angles, those kinds of reactive resentments, albeit justified, are horribly toxic. It was all a horrible experience. That’s why I had to walk away and put up my boundary for good, like I said in the autistic community related disclaimer.

Sadly, only through further battles, wounds and scar tissue did I finally arrive at a place where who I really am, and who I am not, has been better established. I mean within myself, first, because it's the only way for a concept like that to genuinely exude outwards. 

Regardless of it all, proving I am autistic through a neuro psych review which administered testing, viewed my childhood footage, and interviewed my family, was imperative. Though it was almost, and in ways positively too late in terms of preventing major damage to my health, it was still necessary for me to go through with it and come into it. After that, the job was trying to get people to accept it, and realize this is why I am the way I am, in spite of it not being a "stereotypical" presentation. In addition to this I had to convince them that I was also falling ill, and that successfully achieving the aspergers diagnosis did not mean that I had a "pattern" problem with "wanting to have illnesses." It was all connected. It is still all connected.

I think a reason why many autistic people suffer such grave mental health and adjustment related co-morbids is because autistic people (myself included) have this deeply embedded need to be true to themselves. So do many people, but in autistic people it’s particularly strong. But, this need is most often perpetually and tragically impeded on in todays' world. 

When it comes to my own need to pursue being true to myself, I was a daredevil. I would not give up, crawl into a cave, and submiss to society’s refusal to take me as I am. In the face of being character distorted in all kinds of ways, being called narcissistic, seen as an impertinent criminal type, assumed to be somehow conning because “she can’t be real” (because, ironically, I’m so damn real people didn’t want to believe it) .. it was all simply because I have this undying need to be true to myself. I defiantly gripped and waved the red scarf like a crazed Matadora on a mission to be allowed to be me. Even when I wasn’t sure if I liked myself at all  (and don’t ask me how that works) even when I knew it was the far riskier road to take and I was already weary and frail…I still did it. I just couldn’t imagine living life unable to be true to myself. 

Now, however, I pay with significant physical limits, because in the battle my illness progressed a lot. Today I am me for sure, but I’m very sick - and I’m still not sure what the meaning it all will end up being, but regardless I have worked hard to establish myself in the face of many harsh and injurious interruptions. Only now is it starting to pay off a bit, and I’m not yet sure if it’ll be on time enough for me to somehow recover at least partly, and live in the way that I’ve always dreamed of living. I don’t know which “Arc" will be my ultimate fate - Joan of Arc, or Noah’s Arc...

Only now do I realize that I must not work too hard for such things - and where it is that I need to draw the line, and let go of trying to change people who refuse to see it as it is. Some people will insist on believing their erroneous perceptions. I need to let go of those people, they are sick in their own ways, and that cannot be my problem. I cannot let their sickness make me sick. I’m already sick enough, and I know who I am now. I know what I stand for, what my challenges are, I know what the facts are - and today I can say that for real, without false pride. 

This doesn't mean I think autism is caused by illness per se, and that's not what I'm saying, but that's also not something I'll be getting into right now. What I will say is that although connecting with autistic community was good for me in ways, it had it’s damaging drawbacks and even, in a few incidences, it caused me deep hurt. Ironically, some of the internalized ableism in the autistic communities which I encountered, got taken in by, and felt pressured to fully engage in, hindered my ability to ever see my situation in full - and thus be able to help myself in full. I had to exit those muddily-clad, greyly hazed fields - those resentment fuelled trenches - to see things clearly. 

Aside from that, and overall, I think my obliviousness to what was really going on, back in the 2011 post, is a clear reflection of the gross lack of awareness I grew up with, in the first place. It could be compared to a child who was abused, and was so "worked on" in the head that he or she didn't realize they were being abused, even if that abuse was pretty blatant. 

Think things like "being smacked is normal" This could be compared to "pretending and being and talking like I'm someone I'm not, even when I cannot naturally do that without energetic efforts which are painful to me, has to happen. It just does. Right now. Do it. Perform. Do it"  and "Oh my bones, joints and tissues hurt - I'm too weak to lift that, to go on like this- oh thats ok, over-extend anyways, lift it anyways. Do it now. Has to happen. You need to do this - It doesn't matter if you shouldn't or truly can't. It doesn't matter if this is insidiously injuring you and causing you damage." It just kept on, and on, for years of quietly brutal self-injury.

People come away from prolonged exposure to intense stress, hardship and abuse and only then do they realize it. Then, they have to go through a process of seeing it for what it really was, understanding it, coming to terms with it, and looking at ways to recover. It's the same thing with the process of doing unnatural, uncomfortable and ultimately damaging things to yourself in order to get through and survive, because the accomodations in which you truly require are not being made. Sadly it's because for the most part, they don't really exist yet. Regardless, this could be equated with abuse too - in the form of neglect, because the effects are the same. 

Discovering things about yourself (whether it be autism, or a complex chronic genetic illness, etc) that always were, that you needed help, support and accomodation with but didn't get - This can be easily compared to realizing that you were abused via neglect. It's painful. It's emotionally intense. It is realized in stages. It is recovered in stages. So to have to convince others of the truth in which you have uncovered for yourself, when you yourself are going through this as it is - it feels doubly insulting. 

When you uncover the truths for yourself, it's a major process, to go through the layers of revelations and interrelations pertaining to it all. Being met with skepticism, disbelief and even outright cognitive dissonance during this process - There are no good words to describe how intrusive and additionally traumatizing that is. I have been through it twice, with the autistic spectrum realization and diagnosis, and with the Ehlers-danlos syndrome realization and diagnosis. 

I would not wish experiences such as the ones I have had, on anyone. I know many others have already experienced them, and that's bad enough. Now we have to protect our futures auties and zebras. This is one of the main reasons why I choose to be an activist. It does take energy but in moderation (rather than my past extremism) it's worth it to me. It's purposeful, and it always was, but the ways I did it in the past backfired on me, and further hurt me, too often. 

Even though I have said that I wish to hugely reduce the amount of time I spend on activism, it feels like the effect can now be "quality over quantity." To add to this, I have purged, deleted or tucked away any old stuff that, for the reasons I already described, just wasn't good (for me or anyone.) Now that I can see things more circumferentially, as they were meant to be seen in order to assert these issues in a healthy way, I feel like I'm ready and able to do this in ways that don't hurt me further, and be more helpful to others. It's always been the only way to do it. In the face of it all, I can't quit now. 

So mote it be. 

-Rosie G.

Beauty can cause hurt and reverse discrimination

*Disclaimer A*

This is in response to a comment made by my friend, we'll call him "J" ..

J: Geez, you're gorgeous! You were then, and (even with the complications that have occurred since) are now! No...nothing can stop a beauty like yours! It's beyond the bounds of any harshness and adversity to defeat! It is truly timeless and enduring! As you are yourself...and always will be!

R. G.: Thanks J, you're sweet. however, the flip side is that there's a terrible adverse affect of having beauty on the outside, but also being deep, and a good person at heart, as well as ill and low income. Society almost wants me to be this barbie bitch and when I won't be they have to shove me in some other, darker boxes .. There's a lot of disbelief and harsh pathologizing when someone looks well and pretty but is ill, it can work against, and people, especially women, hate you and are cruel to you for no good reason. You walk around apologizing for making THEM feel insecure. They don't even give your inside a chance. They just off the bat hate and have disdain. That's the reverse affects and I've been hurt by them throughout life - but of course I can't even talk about them because that would be "bragging" right?.. 

but I will no longer accept the gas lighting-born narcissism accusations, and being treated as and held to some archetype that isn't me - I will NO longer let other people make me feel guilty for being me, or be overly nice to other women to try and get them to like me I can clearly feel that they're jealous. I picked up on all that stuff my whole life and it hurts. I would let the "mean girls" abuse me just to get them to like me. I did things for people that I should have never allowed myself to do. But I'm sick of letting it have me like some abused kitten walking around with my head down. No more. it's music time.

J: Oh my. That sounds quite unfortunate. But, I guess that's just the harsh reality of the life of a particularly unique lady like yourself! The kind of rough reality that a guy like me can't really get an accurate sense of, from his own isolated corner of existence. I feel for you, my dear! I really do (well, in so far as I am capable of doing so, of course)! That sucks! Though, you've gotten through it! And the success of surmounting such obstacles really shows on your face! Indeed, it shines through your very presence, with all it's bright glowing energy! So, I'd say the struggle has been worth it, if anything! Besides, if you've managed to handle the pains and travails of that most insidious ailment of recent years, and so far consistently come out on top, with that glowing smile, and winning personality of yours remaining intact (if not more noticeable then ever)...then I'd say those pathetic naysayers and emotional manipulators out there should be little more than a petty nuisance! A nuisance to be promptly brushed off without a second thought! For that is all these "people" are in the larger scheme of things...but dust in the wind! Indeed, let all the doubters, the haters, and especially the gaslighters (ugh! Those ones are the worst) be damned! You've got bigger fish to fry! And, make no will fry them...and look amazing while you're doing it! For, with each obstacle you surpass, your personality only becomes more filled with that unmistakable lively spirit which is so unique to you! Yes! There will be no more from these pathetic losers who've felt they have the right to drag you down, when you were meant to fly! Yes! As you's music time! Now keep making that magical music that you make, my friend! It's a true gift you have there (besides all the many others you possess, of course)! Something so many of these folks could never hope to have! Always remember that! Stay strong, girl...always!

Thank you. 

-Rosie G. 

Patience, social limits, adjustments, re-learning patterns

*Disclaimer A*

May 23, 2016

I've been taking in a lot of information lately, in ways that I need to, in order to try and manage this EDS. This is while I’m very compromised, so it takes focus, but a calm enough focus so that I won’t make myself sicker. I’m the one who does most of the caring for me, and it's a big job. My partner has to hold the fort re parenting and many tasks for that matter. He’s already at his limits, being also autistic and with some undiagnosed mild to moderate chronic fatigue issue (which I am concerned about tbh.) 

I am still learning about this illness and my experience with it, and what is best for me to try and manage and get on top of things now because this thing has taken me really far down. More so then what's visually evident to people. I try not to photo in my worst moments. It's a choice of do I want to expose myself like this, so people will see how bad it is and get that, but so that some might think I'm attention seeing or want to ditch out on me for being too much of a downer. Or do I want to try and present the "rising above it" and dressing up, all the good days, and then have people not even be able to believe that I am as sick as this now. It’s like you can’t win either way, but I try to balance both the former. 

Today I can't do so many things I could do even a year ago. I'm always sick to some degree and never a day feeling fully well, just "better" than awful - but I'm still me and I still try to take in life as much as I can. In addition to processing and grasping this, and living and being this way without it depressing me and taking me out, I have to process. I have to be introspective. I share via instagram pics but then have really low forks for others things, and I feel kind of bad, but the former is why. In the face of all this I'm only finally realizing who I am. Even if I am also partially extroverted, wanting to keep up with a connect with people as much as is my capacity, I absolutely require a certain pie graph ration of total quiet introspection. That was always so, but now it's more than ever. 

Chat is extra forks that I often don't have. A lot of aspies find that, especially if they're ill, or taken up somehow. Even commentary, though commentary and picture sharing is more brief and easier. Messaging is alright but it stresses me out, the obligation to chat -  just ongoing active chat - you now what I mean. It's not because I don't care, it's because I care too much. It's hard to explain ...but it's tiring in my situation. I'm also co-parenting as much as I'm able, too. So yeah, I do require lots of time to process. That's why my ability to socialize back and forth is limited. I can barely even do groups that I probably should be doing (EDS support groups) in order to engage in some mutual support and not isolate. It's such a fine balance, with so little to spread around. I'm always walking a tightrope in this regard.  

I just cannot keep up with all that well, though I've spent my lifetime trying (some of which is the reason I'm so sick.) I'm not the best multi tasker yet I kind of have to be. It leaves me with few forks , but the one thing I'm doing right, in spite of my guilt, is having stronger boundaries re: limits, and not overextending - even when I am 100% the person responsible for that tendency to do so. 

Re-learning patterns. Re-learning how to live. Re-learning life as I knew it. I can't afford to worry about who may be unhappy with me for doing what I need to do, and being as I need to be, and going at the pace I need to be going at this time.

-Rosie G.

Biased science

*Disclaimer A*

Genetic testing is trending on Yahoo. No surprise to me ... but you know I can't say anything more because the truth doesn't have the money to be discovered and thus proven...

and in the mean time, I don't feel like being harped on by angry parades of small minded people who think they're really smart by worshipping the forefathers of "Godly Logic and Science" as in, Logic and Science are apparently God (especially biased and bribed "Logic" and "science") ...

You say one thing about how you don't feel comfortable or trusting of these big companies insisting their Franken products are healthy and safe, and all these bullies are jumping down your throat and shouting "dumb pseudosciencer! where's your "proof." 

Well I'm sorry...I have none. I'm not a corporation, with millions of dollars to spend on the research I need to bring the indefinite results that would be needed to present.

Other than the patterns I see, and empirical evidence which I see and hear, based on interrelations that connect in terms of timing, to actions and results, in certain numbers of people who report their experiences on the internet ... well - no one'd believe me or get it, so what's the point in continuing...

Ask Erin Brockovich how she "knew" her peeps were getting poisoned insidiously. She just noticed patterns. Then she dug. That's what I see, on a bigger scale. But it doesn't matter, right? I'm just a "dumb pseudosciencer" ...

The cheapest way out of this and into a logically backed debate, which might have some genuine clout, would be to get people to do surveys. But I don't have the extra forks for that. I need them for other things.

I'm not saying I'm not for logic and science. We need this. I'm saying that I'm not for logic and science executed from a route in which is bias, hailed from an interest in making profit, which is priority over the interest of what's best for people, animals and the environment.

Sorry. I think that's biased science. 

-Rosie G. 

Looking for black holes, or feeding the globe?

Holy smoking caterpillar that is a lot of money to lose. That's a lot of money to allocate, in the first place. You'd wonder how "worth it" it is - what kinds of benefits would this kind of discovering would bring to us. How practical is this. Would we find another planet to colonize onto? Hope so ! Since ours is kind of in danger - thanks to it's, ahhhem, "smartest" inhabitants...

People are suffering all over the world. That's a lot of money! Rather than go look for black holes n sh*t, why not use these funds to overhaul our failing systems, to fund research, to develop safer, healthier ways and systems to do cleanup; to increase our chances of saving the earth and humankind?

Brick walls of truth-evading continue to stand in the way of seeing this and many other things. Only people as a whole, when it comes down to it, can collectively make or break these walls. I guess, for the moment, most of the ones with the big moneys and thus concentration of powers would rather evade responsibility, all the while searching in vain for some "secrets of the universe" and, perhaps secretly (but on the flipside, hopefully!) find another planet to eff-off to - should our mistakes begin to heed an apocolypse. 

Opsssss. Mission failed....

I dunno um maybe assuming some noble responsibility, and like, spending that money to help people and our planet, here and now is, you know, a better idea than looking for black holes. Just some thoughts. But there are so many other things in which money is fruitlessly wasted on, which are much worse than this. As we know, this is far from the only thing.

-Rosie G. 

It's not about being a "curebie" - Get over it.

*Disclaimer A*

I wonder when those who are very radically neurodiverse and of the identity-first mindset will realize that their over-touchyness about health improving approaches, as this relates to autistic people, is more hurtful and damaging than it is helpful. We are often more prone to these illnesses, because we methylate. Health is an issue among autists. So I feel that this extreme intolerance is actually hurting autistic people all around. 

It's hindering potential healing, for in which the result is optimization of that naturally neurodivergent persons' greatest potential. This is how it could be looked at, as opposed to a "oh through medical help we will abolish your disgusting autism and make your neurotypical!” Dude - that's NOT the point. At least not in my books.. and I will not be screamed at “curebie! traitor!” because I want to heal and improve both my physical health and cognitive functioning. 

I will also not be insulted by being call a "Wu" person, because I am spiritual and pagan, and also choose to channel this in order to cope and better myself. Don't get me started on how disrespectful
and offensive that is. Unfortunately, it has happened a lot in the autistic communities, as of late. People have been hurt, and it's not ok. 

My being spiritual and health conscious (I have to be!) doesn’t mean I want to “abolish” my neurodivergence, whatsoever. 

People coming from the angle of “autism is a horrible disease” need to see it more objectively, but it’s also about labelling semantics. Perhaps the ones who are what they call “severe” should just be called “neurologically affected” as opposed to autistic, or should be called “an autistic person who is very neuro-health affected in addition” or something like that. I don't know. We are more prone. Quit denying it. Our brains over fire neurones, we think objectively. Our bodies are highly inter-connective, and this is why if we fall environmentally ill more often (though it is commonplace these days, for both autistics and non autistics alike) We will be more liable to have neurocognitive affects from this. We may even be more liable to present with neurological injury. 

Couldn't this be separated from being an autistic person by nature? I bet that some of the more severe kids diagnosed are only neurologically injured severely, and maybe not actually an autistic person. In fact sometimes I think the autistic brain would cope with such an injury a little better than a non autistic brain would. It wouldn't be unaffected, but might actually be (for lack of a better term) "higher functioning", more motivated to try and get around things, to type on computers, to communicate, less vegetative than you see in the most "severe" of all. I don't know... but what if?

Anyways, the super-radically-neurodiverse people need to take a good hard look at how their internalized-ablism born defensiveness is seriously cramping the healing potential of autistic people who do indeed have debilitating health ailments which are holding them back (this is a HUGE percentage of us.) In fact - some of the super angry radicals may be so angry and putridly inflexible, intolerant, argumentative and outrightly lashing out in an abusive manner DUE to an issue related to health imbalance. No offence! (Hey, it's nicer than saying they're just awful people, isn't it?)

Omg can I not say it? Please. You're neurodiverse. That's great. So am I .. and I like it. I like being neurodiverse. But I don’t like being sick and disabled when I know I don’t need to be, if I could get to the right gentle yet effective treatments ie. testing, individualized diet plan, therapies, all kinds. Gently. Not harmful “purge out the autism” but “gradual healing to get to optimal functioning of an awesome, pain, illness (both mental and physical) free neurodiverse person. Yes I do “desire” this. Should I apologize?

Does that make me a traitor to the Autistic community? I don’t think so - but if people wanna say that - go ahead and be unreasonable. That's your problem.

I guess some will throw stones but I will build my circumferential gate, because I will not accept unreasonable rudeness and lack of respect for something that people, usually who are far less challenged by disability and illness than someone like myself, don’t, or rather refuse to, understand. 

Science is beginning to prove that as a genetically neurodiverse person, people are way more prone to the negative sludge infiltrated in our the environments, due to genetics. We are “methylators", and big time. The biggest problem is the lack of separation. When they make being neurodiverse in the first place *part of the disease* in which, let me be clear, I wholly believe it is not. It's not about eugenics. It's about cleaning up the enivronment so neurodiverse people can be as awesome as can be.

… and you know, in the mean time, things are just what they are and sometimes this produces great things; Neuro-plasticity produces phenomenal precocious abilities (ie. “savants”) in spite of technical affects of toxicity, in spite of what the factual truth may end up indicating (no offence) - so here’s an example:

If some super eccentric “weirdo" genius guy who can barely speak to people and has a hard time with any interpersonal relationship, and cries at least once a day due to his terrible short term memory challenges, needs a support worker to create for him an organizational binder to help him get through his day. It's a struggle. 

What if he is also awesomely gifted - He invents something helpful and amazing that helps the world in some way. He makes good money from it for himself and his family. Well what if that “great” was produced by the same thing that produced the “curse" then so be it. I call that a “blurse." This blursey dude just invented awesome-ness. … because those other parts of his brain were not so good/blocked off/mis-fired, and therefore other parts of his brain became fantastic. 

Yeah so what if this turns out to be, I don't know, cadmium toxicity - like - what if that’s the case? What IF science proves it in a blood test, and when he takes treatment for that gently and slowly i.e.. diet adjustments, some supplements, some more gentle and gradual procedures to help his liver channels remove the cadmium (not by going and chelating himself to death in one go!) What if that improves his state. What if we know he’s built up toxicity for so long that if we tried to remove all the cadmium he could die - trying to chelate all the cadmium from his body rapidly could have him killed - so the gentle treatment protocols will only lessen the cadmium. It won’t “cure” him, and furthermore, he has this problem because he is naturally neurodiverse to start , and it’s simply more common to see the sensitivity toward health-related neurological injury in us (separate to being an autistic person, once again.) 

This is just my personal feeling, but; I think it's because the environment hasn't evolved yet - though maybe we have. It's hard not to say that this doesn't sound elitist, but I'm not elitist either. I'll debate that issue (how I believe we're evolved but I'm not neuro-elitist about it) in a separate blog. You don't have to agree with my theory but that's how I feel, so clearly, I'm not into eugenics. 

I feel that probably every autistic person has some weird anomaly in their detox pathway, and needing to treat it would depend on how bad the effects. Sometimes, it just is what it is, and a person gets by (or has learned to get by) as they are, and there's no problem. 

So this is the result, and it’s part of him - and we can improve it gently, and it won't "cure" him of being his quirky self, either. We will improve things, for the sake of this guys' optimization of potential and quality of life. Maybe he'll be able to sustain an interpersonal relationship, and he'll get married. 

The awkward genius who dreamed of being able to not only talk to women, but get married, and not forget things so much he cries once a day, can be helped. We’re not going to do it from the angle of shame and disgust. We’re going to do it from the angle of ‘improving someone who is - by all accounts - meant to be a neurodiverse individual” and what if perhaps a nutritional support program would help. So he continues to be awesome in his own way and also will maybe experience improvement in his life, so things are easier for him. Is this a horrible thing?

Some of these "savants" (precocities) might invent a system to "clean up our oceans" or whatever. If nutritional therapies will increase their chances to better the world via functioning and coping better, what's the problem? Don't we want autistics to be successful in their own right? 

I believe that everything happens for a reason somehow. Well most of the time. You can make of that what you will. But it's not fair to dump on parents whose kids are chewing their arms apart and pulling their hair out. Not fair at all. Those kids do need help, in the right ways - and if they improve, I believe the result is an awesome neurodiverse person who thinks in ways that are incredibly needed in this world; and can also more effectively share this with the world (while still meeting their autistic needs to.)

It's not about eugenics ok. Optimize functionality. Look in the mirror. Don't be defensive. I'm neurodiverse. I like being neurodiverse. I like being an Autist. I'm also the mother of an autistic child, and I've experienced that too...and because of what we do with him, which is healthy, balanced and gentle, he is now doing great! It wasn't always so..and it was very stressful. There were many tears. But my son is an amazing kid. He always has been, but we helped him reach that potential. 

I'm also sick with EDS and it's co-morbids, and in this disabled profoundly, and it doesn't have to be that way. I can heal. You can heal ... to whatever personal potential that brings for each individual. This isn't about being a "curebie", it's about having a better life. 

and in light of that, I say to these staunchly pro neurodiversity (to the point of radicalism) people; Get over it. Respect people in their pursuits towards a better life. They may be sometimes misguided in their views about autism itself being a disease, and you can politely share with them the view of autism being a way of wiring, even though more sensitive - All the while realizing that even though they may be wrong about that in particular, they're having a difficult time with things. In this they're feeling desperate. They've also been brainwashed too, oftentimes. But they're people. They may not listen right away, but most will consider it over time. If they don't, then they're wrong too, and all you can do is try. 

However, to just lash out at these parents? It's not ok.You have a lot of nerve to dump on them and abuse them in the vile manners which I've seen, especially if you are not a parent, and/or are not physically sick. Please stop. Please grow up. Sorry for my crude analogy here, but if the pro-neurodiverse community is ever going to be successfully "potty trained" (in terms of conflict resolution and all that comes with it) we need to start with some basics; boundaries, tolerance for others' varying viewpoints, respect for others differences, and compassion for others' varying struggles.

I'm not saying everywhere in the autistic community is toxic, there are some great groups out there, but in many of them and as a whole, hurt happens. I've had to become wary and keep distance, which sucks. This shouldn't be happening as much as it does, but it does...

A lot of minority communities have struggles with this kind of thing early on in their development, and the pro-neurodiverse autistic community is still very young. I think things are especially profound because of people's traumatic experiences and come-by-honestly interpersonal/relational struggles. This is so with not all, but most of the people who make these mistakes and hurt others. Most don't really mean it, and don't understand the magnitude of their behaviours' psychological and sociological affects. It's hard to see amid one's tunnel vision. Though these are reasons, I don't think it's an excuse for some of us. Regardless of it all, some humility is needed here.

-Rosie G. 

Strict and mean diet beasty

*Disclaimer A*

My unfortunately-personally-assigned "Megabeast" has some serious cruelty issues - It wouldn't even let me have a paleo Nanaimo bar. I got a big fat spanking for that. 

So, I ate like one thing veering a little off of my GAPS diet yesterday - the paleo nanaimo bar. It somehow sent me to the ER. I was already feeling crappy but it clearly sent me over into some kind of weird "metabolic meltdown" and f*** those things are scary (as well as potentially dangerous.) Wth? A sweet nanaimo bar with agave. At first I thought it made my blood sugar high. It felt like when I was pregnant (I was diabetic when pregnant) when my blood sugar quickly shot up to 15 one time. Sometimes I do get mildly high blood sugar spikes, though it's oddly unpredictable and occasional. 

So I thought that must be it, and, trying to keep my composure, because I had my child with me, I ran home home freaking out to poke my finger, expecting to possibly see an 15 + number. I had the spins, could barely finish my sentences, felt very very "out of it" disoriented, dry mouth, just messed. Very scary. But when I checked my blood sugar it was in a normal range - almost a bit low.

I was surprised, but I feel like my blood sugar spiked brutally in response to that bar, it was very quick - and then my metabolism freaked out and over-metabolized the carbs along with my electrolyte stores etc. All from veering off the GAPS and eating a disaccharide. It's already so sensitive I guess. 

Sounds crazy? It's not that crazy. I did end up going to the ER. I was scared, and there it showed that my electrolytes were actually low. They thought I was water intoxicated. I said no, I didn't drink that much water at all. So what did it? I don't know. I wish I knew. All I know now is: no more going off GAPS.

But I was already feeling bad-ish that day (but trying to rise above, where's the line hey?) in other ways. My neck was bad that day, so my nervous system was already in some over-gear. This just pushed me over I guess. It works like that with this multi-headed beast of a thing. Many "dragonheads" can come into play and make ugly results together. It's hard to totally avoid, and a constant came of minimizing/keeping tame most of those "dragonheads."

The bar was very sweet - but it was agave syrup, not honey or dates or maple syrup (which I'm allowed, and do ok with - not wonderfully but I can treat with those once and awhile.) Agave is a disaccharide. Anything that's beyond a monosaccharide in GAPS is forbidden. It's too hard to digest with a badly damaged gut or metabolism. GAPS is supposed to help badly damaged gut lining, and other things, so I did respond positively to it, although it hasn't "cured" me because my problems are more deeply embedded then that.

The adult metabolic clinic in vancouver has refused me thus far, which actually isn't fair because I have some signs of metabolic issues, as well as a blood test result suggesting some metabolic problems (ie. mildly low carnitine.) It's not the only thing that is my problem, but it's one of them, and it's not helping. I wrote a letter to them asking them to help me after they turned down my referral. They didn't like it, and it wasn't even rude (I don't think) .. They just don't get how I communicate. So now I'm not to call there again, or whatever. No access for "the freak".. The gate-keeping system and protocols are rough on those who are different and act differently.

I want to appeal the matter via the provincial genetics program, which I am waiting to get into. I'm hoping that with all the evidence and suggestions from Drs which I now have, that the Vancouver genetics branch will test me for metabolic/endocrine disorders, not just EDS types. We'll see. So much fight..

It's unbearably cruel of these people to make sick and weak folks fight so hard for themselves -  It's like asking a dolphin  - who just got side-smoked by a fishing boat - to jump thru the hoop. 

Well anyway thanks to GAPS, I did get back from feeling like utterly dying and terrorized nearly day in and out, back in the winter. But I'm still very challenged, with new challenges coming out, and sometimes the occasional scary episode. Usually it doesn't send me to the ER though. I should just realize that GAPS is one of those things that works to keep my system from killing me, and for my safety I really have no choice but to spew out doe that I do not really have, to eat GAPS plus gluten/dairy/corn/soy and a few other things free, PLUS low histamine now. Sighs.

This is why sometimes I think a feeding tube would just be easier.. This diet, coupled with keeping some watch on high histamine foods (EDSers get mast cell activation) .. it's so taxing on the funds and on the energy (to prepare - unless I say screw enjoyment, here; a few whatever things I can have which are a protein/fat/glucose ration, blender, drink , done! I do that often actually)  .. 

I'm stuck on this specific diet. If I get too poor it'll just be like eggs, coconut oil, some kind of fruit, veg, blender, twice a day. It's so rough, to keep up with this financially. I intend start selling some of my clothing collection. It's nice, and could definitely sell. I just have to find the energy, and mine is so limited because of the dysautonomia. I can't push myself too much or the results can be scary, sometimes dangerous. It's so life limiting and I want a solution for this especially. I know there is one somewhere, especially in the USA, but I don't have access to it as of now.

As for food and eating; I will laugh in the face of whomever wants to call my borderline-starvation-by-no-choice an "eating disorder" (like the medicals used to here, 'til I proved things.) Truly, I will ask the next person who thinks that's why I'm avoiding food if they would like me to be sick, and to possibly even have a scary crisis, in front of them. (No finger down throat required!) 

If not, then I shall continue with my juiced apples, coconut oil, egg yolks n sea salt with (swallowed with two types of digestive enzymes; one for fats/proteins, one for fibres) while they take for granted their yummy tacos, and burgers, and ice cream, pizza and chinese noodles - and eat their nice normal enjoyable meal like a person who has a normal, far-less-sensitive-to all the crud in the environment kinda body :D (Y)

-Rosie G.