Wednesday, May 17, 2017

Communication Paradoxes

I end up using this simplified quirky-edgy-chick colloquialism-esque schtick/script which is, in all honestly, mandatorily dumbed down compared to what I'm actually thinking, because I literally *cannot* say more than a small fraction of what's really in/on my mind. I don't think in words first, or even a conventional thought process for that matter, and there's rarely time/brain-fuel to fully translate. If I have more spoons, and I'm feeling alright, and I'm in a positive, balanced emotional space, all those factors allow me to get more out. But it's not consistent, due to various factors and thus very valid reasons (which would take another blog to describe.)
This has been my lifelong struggle. I want to communicate more than I naturally can, using this language/way of it, anyway. Because of that high interest (special interest) I've honed some precocities in the same areas I have challenges. This, ironically, causes the underlying challenge aspects to be misunderstood and even seen as character pathologies - and this overlaps with CPTSD, which doens't help. So this schtick-script is how I talk when I talk, i mean; it's me. It used to not be me as much, before I was diagnosed I was more of a chameleon, which hindered and stunted my own identity's development, further contributing to psychological issues associated with CPTSD.
Today though, I can safely say that I have come into myself and that the "schtick-script" is Rosie talking, albeit with an accent. Well, the schtick-script *is* the accent, but it's *my* accent .. make sense? All autistic people who talk have their own "accent" in this regard, I think. Ultimately, it's still work to be me in a human language. I'm a fairly fluent E.S.L student, but it's E.S.L all the same.
Written word is another, perhaps slightly better, vehicle - I'm often able to say more because I have more time to think about it and translate, but it too is very energy expending, in a different but equal way to speech. Also, when it comes to speech especially, I don't know if it's really possible to say *all* I see, without it taking a novel to write, for in which there are really not enough forks, and it's iffy as to whether it'd even come out coherently. Perpetual frustrations.
If I intend to budget and prioritize forks, I have to pick my battles and use my odd communication gift/blessing/challenge/curse paradox where I feel it's most helpful, on a limited basis, and that is it. I've gotten a lot better at making blogs more succinct and coherent, so I prefer to focus there, but on the occasion when it's most pertinent. As for videos, I don't think I want to, until after I get my production/artivism/music stuff up and running. I'm still dealing with some PTSD from some of the stuff I want to speak about, which makes the overwhelming thoughts hard to lasso at which time things become too elongated and ramble-y.
A sense of disempowerment, as well as lack of structure, are huge triggers for me (classic example of PTSD and autism overlapping there) so, when I get my stuff more organized and compartmentalized, and I've completed the first couple things on my list, I'll be more able to go back to discussion videos here and there, though it won't be more than 2-3 times a month. Things are always a little easier to do in writing, though I do good videos because my colloquial schtick is well honed.
In spite though, it was always very energy consuming to do the videos, to go through and edit them to make sense. It was always hard to get all I needed out in anything less than ten minutes, and it rarely happened. It truly was a labour of love, generated from passion and my brain lit up in high interest, but I can't do them as much or as often as I used to, unless I martyr myself completely. It's hard! I have to prioritize. 

Monday, May 15, 2017

Never Mind The Dinosaurs

Never mind The Dinosaurs (*note: this doesn't just apply to autistic people)

Autistic people don't just speak in one language, they just try to talk in whatever language they have to talk in, to get by in that scenario. To communicate effectively in a way that suits the nature of the setting. It's called adapting, or having to find ways to adapt, when it doesn't come naturally.
One who calls that "manipulative" or deems it sinister in some way is as ignorant as your great aunt is about being gluten free for Christmas dinner. So, will you go to her house to be polite, eat it, and suffer later? Last two Christmases I turned down such invites. It wasn't worth my being sick...
Yeah, I took flack for it. People got offended and made my problem and my boundary about themselves. But oh well. Those are my boundaries. Sorry, I can't and won't attend a meal that'll make me sick. You don't think I require adjustments to it when the fact is that I do? Sorry, I can't come. Not coming. I'm not hurting myself to make you feel more comfortable. Same goes with autism stuff. I can do my best and be me, and if that isn't enough for you, see ya. It's not worth my precious time and energy.
Unaccepting people, who are too starchy to be open to objective, new concepts, must be stood up to once, and then ignored forever more. They're dinosaurs...and the ice age is approaching.
Hasta la vista baby.
So, to all of us autistic folks, medical "zebra/unicorns" (rare/complex illness) and the like:

Never mind the dinosaurs. Never accept their projections of you, get defensive and angry. It hurts you, and it almost starts start pseudo-proving their point, because that's the cycle of the gaslighting effect - but don't kill yourself defending yourself either. Facts are facts. Truth is truth. You know your truth.

 Take it from someone who tried both ways and only got hurt bad. But no more. I now have a sense of self dignity and this is what I'll #riseabove with.
Hard to do? Yes. It's hard to find the balance and to rise above. But here: Keep firm but keep your cool. State facts in 5 minutes or under. Walk away. Don't look back. The rest is their sh*t.

Banners and Violins

Banners and Violins:
My friends are suffering ... hospitals, migraines, black outs, stroke-like episodes, POTS attacks, cardiac arrhythmias, risky endocrine swings, immense pain, crippling fatigue, inability to enjoy eating like a normal person, severe life limits, paying for having a good time with days of pain and suffering, oh yeah and heads falling off...etc..
I am suffering with much of this too ..But I am going to find and steal joy somehow. Whatever.
We're fighting for our lives. For our right to exist with some dignity, some decency in our quality of life...and there is some treatment available already. But money prevents so many of us from accessing it. Money, and attitudes. Attitudes are huge.
Our families are getting sick either literally, or from watching their afflicted loved ones suffer. Our kids are getting sick! Multiple families I know.. Teens to young adults with their lives just starting - and sometimes the kidlets - coming down with this awful sh*t! It breaks my heart for us. I had to convince my younger boy, the one who unfortunately seems to have inherited his mothers zebra stripes, to try his best going to school today. He misses a fair bit, but not tons. We try for that. The school is small and warm and very understanding, but still. It's HIS experiences man, or lack thereof, that concern me .. I do not want him going through what I have ..
It is time for the world to STEP UP for EDS, dysautonomia and all these kinds of genetically based, environmentally triggered, evil illnesses. It's the new autoimmune, yes, it's like; "Autogenetic".. Yikes! No. I'm going to kick this disease's ass in the ways that I can. and I can. Not going to stop until socially, scientifically, emotionally and spiritually, it's ass is kicked. I'll do it by rising above all the protocols designed to let it run us by nose, ignoring all the "hey, you can't go up there, you can't do that" rules, using whatever means I have to, to fly up there with a giant banner citing: WE ARE REAL. THIS IS SERIOUS. FIND A CURE, and CARE..OR BE SEEN AS THE SAME KIND OF JERK WHO DOESN"T CARE ABOUT CANCER.
Violins welcome. Sob parades be. Run for the cure runs galore. Please.. Here's a long overdue tissue box, cause yeah, it's brutal and sad what we go through. It needs to sink in, only then will you realize how cruel the neglect has been... AND THUS DO RESEARCH. Thanks."
Okay I'm done now. I'm ok, don't mind me! I'm all good. I do mean it - but I am ok and I'm strong. I smile somehow through pain and fear. No prolonged frowns. Hehe. Easy does it .. 

It's not theirs to gaslight

It is not theirs to gaslight.
Objectivity is so important when understanding an autistic person, or one may accuse them of something offensive like a personality disorder. No. Not at the core, and never. No true autistic person is at the core. The term needs to be; Personality divergent.
Personality disordered people hurt people, and themselves, but key criteria; hurts others. In retrospect though; an autistic person may develop, due to CPTSD, pseudo personality disordered traits in a state of severe trauma or in a state of severe internalizing ableism-esque denial. A lot of our unaware and false-pridey parents echoed this behaviour, as they, often inadvertently, harmed their kids whence they saw too much of themselves in us and it scared them. Either that or our parents were NT and just didn't get us. Regardless of whether our parents and other family members were relatively clueless allistics or what I sometimes call "aspies gone bad" we can't let it cause us such bad CPTSD that we cannot functionally be.
Most of us have CPTSD, Complex post traumatic stress disorder - Awareness of it, and daily work on it, is so important. Not only that but, it is a defense against gaslighting (when someone calls you nuts, you are convinced you are, and start behaving as such) to be aware of your CPTSD. Then, you can find a balance where you don't use it as an excuse to full on lash out, but you acknowledge it as a reason for emotional slips, and ask that others be understanding (this includes trying to separate where the autism ends and CPTSD begins) while you continue to work on it.
It's not about gravelling down on your knees in apology and shame, but just some balanced humility along with self love and faith ie. self forgiveness, met partway with understanding, too. When you get into the zone of not hurting anyone (even if it's by accident again, because you yourself have been hurt), if you're inner magick becomes run from the principal of "harm none, thy will be done" then you're certainly *not* a personality disorder, or even an aspie gone bad, you're just a personality divergent and damn well magickal autist...
At that point, you have the power, you have the keys, you have the steering wheel baby, you have the magic want.. and *no one* has the right to call you a personality disorder, and if they do; State facts, walk away, don't look back; Never mind the dinosaur. This is your magickal, benevolent lair. It is not theirs to gaslight. #happyautismacceptancemonth 

"If I am wrong, educate me"

This is a wonderful and virtuous concept to remember. Much conflict can be prevented this way, and in fact, positive change is more likely to happen when we refrain from barking at people for being unaware, but patiently and politely though staunchly, and even assertively if/when needed, educate them. Sometimes it may be frustrating, when you want someone to be aware, but we must remember their ignorance may not be their fault. After we try to educate, of course, it's out of our control. The others' response is out of our control, and time may be needed for something to sink in, on the part of the other. Or, it may never sink in - but the part we can do for the situation is to try, and give it a good effort, not one that will only backfire by causing further discordance. However, if we give it a good effort and there's discordance anyway, that's when we can use our boundaries. It's the others' problem then. Some people are very stubborn, in disagreement, or have cognitive dissonance. Always their issue. However, Nonviolent communication can still be staunch and assertive and hold boundaries for the one exercising it. This is challenging to do, especially when feelings of frustration and PTSD are involved in it, but it's possible, and likely to have more positive, balanced effects. 

Merch for funding! (unicorns aren't just pretty and cute)

We need money for #raredisease ; / It might be cute, the whole merchandising thing, but it's also serious. I also don't think people realize this. I don't mind the unicorn marketing that much, but I also think they aughta do more zebra stuff, rainbow zebras and definitely rainbow "zebracorns" .. It'll all be fun but, hey, here's a crucial idea that could, in the face of out-of-control capitalism worldwide, turn this game inside out and use it to help the mess. Sell the zebra and unicorn merch, pledge a portion of it to research etc. 

Ideally, it should be a policy/law. All of these products, ones which glorify and make light of the increasingly trendy image of "different", "unique" and "not believed" should have a percentage of their proceeds going to social reform and most especially to RESEARCH to SOLVE the scary evolution of disease being called "rare", though it isn't really rare, but just frightfully not well understood. We need answers. We need treatments. We need total medical system overhaul, worldwide. We also need social system overhaul, which plays in too. People are dying. I am dying, but hell, I'm gonna live til I do. Research. Awareness. Now. 

Innocence. Kneeling at the curb.

When someone who has been traumatized and abused acts out and does something criminal, badly hurts or even kills someone: They seem to be offered a secure environment with regular meals, medical care, and therapists; rehabilitation.
When someone who has been traumatized and abused refrains the former; internalizes as much as possible, to a point where it's poisonous to the health and evokes various genetic maladies, doesn't act out in such injurious ways, tries hard not to make mistakes in spite of little proper guidance and resources, tries to even turn their pain into helping they attempt to get help repeatedly until they are denied and traumatized further. They are then defamed and gaslit into thinking there's something wrong with them for thinking that maybe they deserve help. Then, they may seek alleviation with what pours fuel on the fire and hurts the body so much further, partly due to emotional and/or physical pain and partly hailed from the gaslit-born belief that they must deserve it...
So then they end up very sick and totally broken, further refused of help, and written off to go die.
Criminals, who didn't even ASK for help, are helped more and treated better than innocent, marginalized people; autistic adults, the chronically ill, disabled victims of Complex Post Traumatic Stress Disorder who are BEGGING for it.
Innocence. Kneeling at the curb.
Does it cost more to help the kinder hearted ones?
 - Rosie G 

This kind of "cure"

I'm sitting here re-designing my stuff in preparation, and I realize I'm not sure about something (and I should try asking my friends on my personal facebook) a question. This is a positive step in the right direction actually. So then, the appropriate question in which I need to ask pops into my mind: 
Screen Shot 2017-03-20 at 11.35.21 PM
This is a question that I identify and ask, because I am now able to see where it is that I could be writing too pedantically. I'm just not sure of the second part...but I only saw this, a potential step towards improving something for mutual benefit, because I had #humility. This is a virtue .. and it is not to be confused with humiliation. It's about acknowledging something without the shame, and with humble self-security. After all, nobody's perfect. 
Upon further reflection: I realized I was doing good with being succinct until the last part of the question - because- I asked the same question as the previous question twice, but in a different manner than the first. I think I needed to mentally process it on a different string. It's somewhat comparable to algebraic steps. 
Actually wait - it was "distilled." Yes, that's what I did. I distilled it. I spewed it out more complicated at first, and then ran it through a "mill" to sum it up then. This means I could delete the longer stuff, and only keep the sum up for other readers.. because; as if your average person has the patience for the longer way of communication! Not in todays' world especially. People just don't have patience. Though elongating concepts seems to works better in written form, where people can take more time to read it. Can't do that in spoken form as much, or it's called "rambling" (this is why I edit my videos a lot.) Ultimately, maybe it's just better to do this with numbers (like algebra) and not words?
Or maybe, there is no "better" - as long as you can make it work right! Has to be that way, I think, because this is just the way that I think. Lol.
But hey.. at least I asked a question in only 2 steps, and not like 3, 4, or 5... Haha. *Gold Star For Effort* Rose! A little lack of false pride - ie. humility - goes a long way (Y) ;) ..
What I mean by the above is saying this to myself: "Ask the question when you don't know (but of course, try to ask people who are your more trusted friends.) Don't sit there in your toxic trauma imagining yourself as an idiot. This is today and now, and your friends may be able to help you. Even if they can't, they're not going to think of you as an idiot for having a particular disability in which you can't really help. Even IF someone thought of you as an idiot for something you can't help, that really is their problem. Right? Right.
Well.. to even achieve the ability to say that to myself, I have to first acknowledge my shame. Before, it happened quickly, and so did the subsequent reaction to it (to shut down and block out acknowledging the need for help, because you think "I am relatively smart and I should know this - what is wrong with me? Maybe I am just an idiot .. no I'm not! I'll do it  my way and well, whatever! etc)
It is indeed hard being too mentally complex and fluid, particularly with a theory of mind blind spot, and probably a few other specific blind spots too. :/ ..and I'm sure others can relate. However, I am getting better with being succinct on my blogs. I guess being #spoon and thus #fork limited has left me with no choice. So the phenomenon of "getting better" happened, even in the face of health related neuro-inflammation, which is actually impressive. This does kind of support the theory that autism and neuro inflammation are more separate things than the "curebies" (those who believe autism is solely a disease) say.
However, neurologically divergent people (autistic, ADD, highly sensitive - a continuum of etc.) are particularly vulnerable to neurological debility when sick. They're also particularly vulnerable to environmentally and genetically based illnesses, which I think says something about our type of detox system, more than it does about autistic wiring itself being a "disease." Or perhaps, we are more vulnerable in different (though just as debilitating) ways as non autistics are.
I must also point out that my improvement in communication organization, and being able to be more succinct, looks to be an interesting connection between psychology and neurology, because I know maturation is related to this improvement. We have a peculiar way of maturing, being so ahead intellectually, particularly with fluid concepts, but behind in other ways that take a painfully long time to catch up. It's probably because of being ahead in the first ways, at least in part. Trauma, because it happens to us so easily, is another part of this...
So our environments don't help. We are often shamed, and repeatedly, from the time we were very young. This is why the mental process in which I described above happens commonly, hindering our growth, hindering our ability to "get better" in our minds, which indeed thwarts our functioning. Abolishing this barrier is not synonymous with being "cured" of autism whatsoever. This is not what I mean. I am referring to thriving as a neurologically divergent person. Such a thing is rare today, and I hope to do whatever I can to help it become more common. This is why I write now.
People on the autistic spectrum especially are often repeatedly provoked by trying life experiences which can ultimately make or break us. It's a lot of adrenalin to take in, and it produces both bad and good things. Sometimes terrible and/or great things! To note though, if too much trauma happens to heavily and too quickly, there is an inevitable and injurious stunt in this development. If trauma is particularly profound, which it is for a fair number of autistic people in their lives, it's really a make or break situation. I would know. For some, this even amounts to life or death - and a #momentofsilence for those neurodivergents who have fallen in the face of excess strife (I have almost been one of them.) 
For people like us, when under that kind of gun, it's only with some time and with some major #zen that exposure to being severely overwhelmed and shocked can be overcome at all. It may not work for everyone, but #faith helps me. Being as health challenged as I've been the past few years, I have had to hold my #faith. I am pagan and very spiritual, even religious in ways - but faith doesn't need to translate to religion. In 12 step programs they recommend the acronym G.O.D (Good Orderly Direction) for those who are atheist and/or agnostic.
This faith is something which seems essential to hone, when the world is where it's at, and this very much includes tortuous circumstances often well beyond our control. Faith, of some nature, truly enriches a phenomenon, which includes having humility as well as many other things. This phenomenon can help us not only get through alive, but get better. All the way to great. The summit could actually be reached, on the mountain we climbed as we battled uphill so hard. Being risen above in that manner could bring true peace, and thus to be cured, at least of ones' spiritual ills. This is so abstract, so, what does it look like put into action? I can't say now, because what this can look like would hugely vary from individual to individual. So it's a whole other blog. 
Of course you may ask: "Cured?? What is it that you say, Rose??" No, I don't mean get "cured" of being autistic, but cured, or rather "freed" of the barriers which keep us from reaching the best we can be - for who we are. The "disability" phenomenon of autism is based in being differently wired in a world not built for this at all, with health and psychological affects only being secondary. So I mean "cured" of the secondary. For me it starts with things like, being able to ask questions like the one above, openly, without pausing for thought in fear, or having shame attached to it..even if the responses aren't all nice. I can't take on what's not my problem, because I need to understand my own problems enough to get through them. By the way, as long as one doesn't lose sight of their compassion and empathy, and actually aims to use this method of filtering to move through their problem - this is not selfish. It is a necessary tool for survival.
Balance, humility, confidence, and faith are all virtues which help strive for this kind of "cure"- optimal inner peace and thus self improvement, when you are an autistic person in this day and age. 
I think that in spite of it all, I am getting a little better at lassoing my #autisticmind ..and having #humility 

The magnets don't work anymore

It's interesting and disturbing that those magnetic bracelets and necklaces which used to help soothe me when I was younger make me feel sick now! So I passed them into my younger son, he's a little zebra, and he's ok for the most part (other than minor complaints) so he finds them helpful. This makes me happy.
I wonder why it is that those things which are supposed to be healing now make me sick. I have a theory but I don't know quite how to verbalize it without lamenting darkly, but I might as well say it because what do I have to lose;
It's something to do with this: "things are so discordant and damaged in your body that the magnets cannot correct it  - the equilibrium is permanently torn up - So the magnets are stuck trying to mend it, in vain, and it sort of "pulls apart" causing further discordance. That is how it feels. It means either I am done for, or I will be done for without the interventions of specific medicine. Or both those things.
I know this because of things I remember from the past. I used to feel bad if I used the pain relief magnets when I was either intoxicated on alcohol or opiate pain meds, which I both needed but then again did have a problem with. Today, in spite of being in more pain than ever before, I do not (and cannot) use any drugs for this (other than low doses of medicinal cannabis, and not smoked, or I'll cough like crazy.)
When I would self medicate I couldn't use the magnets or I'd feel ill. It was my body saying "no, I'm toxic - don't try to mend me when I am toxic! get it out first." My body freaks out when I'm both hurting it and trying to help it at the same time. I have had some scary experiences with this, while trying to have my cake and eat it too, and I sure learned. So I don't do that anymore, this is well in the past, but now the magnets hurt me all the time like this. It is so unnerving ..
Also to comment on the part when I said "when I was younger" .. I seriously felt like an old lady saying that. I really did feel the sensation of 10-5 years ago was 20-30 years ago. Considering what's happened in those 10-5 years it makes sense in the way of a phenomenon which I find disturbing. In the face of feeling like I'm staring down towards a horizon that really is "heavens' gate" for me, if there was one, I have goosebumps.
I feel somewhat irreversibly damaged physically. I was susceptible in the first place. I believe it's mitochondrial .. but when I was a young stupid doe I could never have guessed that I had some form of mitochondrial /cellular disease diathesis, by the name of what they label "EDS." I could have never guessed that common medications in which I sought out, in rebellious desperation to self medicate simpler but aggrivating musculoskeletal pain, in addition to all the trials and tribulations of being an invisibly autistic woman in an inhospitable world, in addition to trauma that kept flashing in my mind when all I wanted was to forget.. but I never imagined doing all I did to run away from it all would injure me that badly.
It isn't normal to be injured that badly by that stuff. Not unless you go on and on for years. Well ok, maybe it is somewhat normal to be injured, but to the extent that I am, I had to have been already prone. I have been injured both badly and in very atypical ways, because my body type is very atypical. In the end though, it doesn't matter, cirrhosis liver or cellularly degenerative metabolic state...they are both life threatening. In fact the first case has a better chance. Get a new liver. Easy solution.
But it is normal to be this damaged, if you have a diathesis for it, and you didn't know, so you tried to measure up to those able bodied in the most dangerous kinds of ways. It could be compared to a teen with Cystic Fibrosis or something, going out and partying. For that teen with CF, it's a dangerous game of borrowing, by means of destroying, #spoons that they will likely never get back. But unlike CF, my somewhat comparable but much more insidious situation dangerously flew under the radar.
It's one thing to find out you were autistic all this time and didn't know, to feel angry about it, and to want to "come into yourself"and express it, and share, and learn etc. To want to speak out, with angst, about the injustices which caused you to seem like you had other "mental illnesses" simply because you were not accommodated or accepted for who you really are.That experience is trying, but at least there's excitement and good in it...
However, finding out that you were, all this time, genuinely more physically fragile due to a genetic illness, and the only reason you stopped listening to your body is because you were gaslit out of doing so. You were told you merely had but a little "fibromyalgia" and yet you were dealing with genuine, more serious fragility which could become a life threatening  illness without precautions taken..and you didn't take those precautions because you were convinced there was no real need. Then, you let them get you angry at your body..for apparently "playing tricks on you" (but those "tricks" were real the whole time.) You let them let you hurt yourself. They poured gasoline onto you, they handed you a box of matches, and you lit the match...
This experience is much more horrifying. The guilt. The grief. The remorse. The desperation to do something to make it all mean something in the end. To find some good in this, as I did with the autism discovery...but this is way harder. This is way more trying. This is way more terrifying..and my true feelings about it are unexplainable.
The magnets don't work anymore.
 - Rosie G 

This pain

The pain of EDS. There really is no way to describe this kind of pain. Plus, not only do painkillers not work very well anymore, they can't be processed properly, by the most severely and internally affected. They tend to just upset innards ie' gastric organs ..causing nausea and a feeling of poisoning which is not worth that partial painful relief. This is what's come to be over here. Yes, yes.. I use medical marijuana; CBD oil, and indica tincture. I can't tolerate large amounts but smaller amounts take the edge of without offence.
People have no idea. If I wasn't more determined to live some kind of a life, I'd just lock myself away and be a total recluse with my comforts. This pain and this kind of illness is enough to make someone go mad. Turn into a reclusive, eccentric, decrepit, isolating frou frou surrounded by a sea of stuffed animals and, if not allergic, therepeutic pets. It's painful to talk. It's painful to do. and yet I still try to do. To be what I can. Because I want to. Part of me likes this and needs this, but there is so much desire beyond limits - I can stubbornly disassociate until I get to an 8.5/10 and then, I am done. Blinds up. Dark, desolate castle. Locked in a room in the tower, amid a nasty draft and warm blankets piled around in vain. Missing out, and just unable. Consumptive and trembling, candles lit, tattered canopy lain. The degree of this agony has no ability to be aptly verbally expressed.
I cannot connect the way I want to. I cannot do things the way I want to. It is lonely and devastating. So I feel like I have to find something that'll be helpful and purposeful to people instead, to make up for it, to be of purpose in this life, as well as steal joy for myself as a daily reprieve from the vicious physical pain and tragic limits. No it's not just autism. I don't know if it ever was. But it is an intense double whammy with being a neurodivergent, though socially motivated, person with inevitable limits. Those lines are very very blurred for me now, which is which..and were they always, though I didn't realize it.
I don't even know what's the truth anymore.. about it... though I do know that I am naturally divergent, and it's what caused me to be so prone to the torturous ailments which I have to live with now, and have always lived with to some extend. But I made the mistake of slapping bandaids on cuts as tight as I could, and leaving them to fester. I pay for this now. That's another entry.
But no, I am not saying autism itself "is a disease" but, we sure as hell do take the brunt of these kinds of afflictions. There are reasons for that, for another entry too. I don't know how to even articulate this pain, but all I can say is, I suffer in silence a lot more than I have ever displayed. I don't like to appear too vulnerable, and I used to put up shields of false pride. This has backfired on me badly in the past, and I ended up far more hurt than I was hurting initially. I still perpetually reach for relief, but this time, in ways that do not hurt me further. Those are often agonizingly and infuriatingly hard to touch, and even harder to grasp and hold. For so many reasons. That, too, is another entry.
This pain. I feel like such a jaded woman. It appears like I could have things going for me, and I once did before I got worse. I grieve the fact that I let resentful, insecure abusive people lash out on me. I let them make me feel bad about myself, and it took away from the precious extra energies which I once had more of, even just a few years ago. I wore my heart on my sleeve as I let them rip off my wings and leave the wounds gaping un-bandaged, infection setting in.
Hard work, determination and faith brought me back to life at least, and literally, because in the past three years I have almost died a few times, falling into flare ups so bad that I really didn't know if I'd make it through. Frustratingly, I have little concrete proof of exactly how that happened, because it's EDS of course, and wrenchingly, that is currently how EDS is. We need research so desperately.

I know it's happened to others, some of whom don't make it. I hope to soon be able to identify this as real and share it, so that it can be put to a stop and prevented. Because I stand in the truth of what I know and what those closest to me know, and have witnessed. What happened to me, and what I did, is not easy to explain, because I lot of it was intuitive, and weighing my intuition with patterns of logic, post investigation of others with this horrifying but mysterious illness' experiences. What they had done, what information they had, since some live in areas where there is at least more information than I have in the area I live, as my medical system is way behind in it's knowledge or rare/complex disease. Thank god for the internet - but this is definitely another entry.
Now, I appear like I could maybe go places. Though things privately wax and wane more than I share, and I could one day be gone - though I live every day balancing on the hope that I will live on. I share to live, to interact, in ways I can that is, but hopefully with that, I can make some kind of purposeful impact. I'm still working on that and I intend to spin this spindle, and making it positive and dynamic in spite of it's potential to be a sad tragedy. That is not how I want to present myself or be remembered. 
I'm not nearly out of the woods, nor will I ever be completely, and the clock is ticking. I swim against river rapids, with this unfortunate body of mine melting from the inside out via fragile collagen. This collagen is targeted, as a form of a mysterious but horrifying cellular, mitochondrial mayhem, which I was prone to, which I struggled throughout my life a little, though only a little.

But I didn't like it, I didn't want to accept it, so I tried to fight it. Then, it lapsed into a aversive chain reaction of misfirings, through a series of negative energy exposures, much of which I made the mistake of letting in. The intended damage was done, and now, they're like strings of lights burning out one by one, each smoking and sparking nerve endings, shutting off and making things weaker, as tissues invisibly micro tear on micro tear, and scar, and micro tear. I melt. I burn out. I die as I fight to live.
Whoever thought that the soft skin I was born with would be the biggest "curse" in the "suit" of a "blessing" ever know to humankind. 

You are igneous and I am shale - maybe even soapstone - under the heat of the world, which is rising. The doll is cracked to pieces on the shelf of a vacant post house fire basement, but her face remains intact. She looks superficially pretty there, but she is alone, and she is crying blood from the inside. Still determined to be here. Still determined to somehow, in one way or another, make it all worth it in the end.
This pain. There are no good words.
 - Rosie G 

Let this happen as it's meant to happen

March 6, 2017
I just saw a post from someone on the EDS groups "keeping count of all those who are passing lately, RIP ladies" or something like that .. People are passing away in EDS groups, and a lot of them apparently. Seriously. NO....But yes. It's really happening.
I am just bawling. I'm so scared for all of us .. I need to stay here because I need do to something about this. I'm on thin ice myself. I have no way to know if I'm safe, among the medical system I am currently stuck with. I'm planning to do something. I have serious mission to do. Body. Please let me STAY here to do it..for the sake of my family and for the sake of this mission and for the sake of I DO NOT FEEL DONE.
I've always I'm supposed to do something. It can't not happen. I need to stop this. I am supposed to be a part of stopping it. Or is that all a lifelong illusion...
I don't care who thinks that makes me think I'm "special" but I have to be here. Damn it. Magick be with me. I would have died last year had I not worked my ass off, with the help of spirit through people, through the go fund me helping me replenish my near-corpse-ness and breathe life into it again, and my internist agreed to order infusions and prescribe me Creon (prescription pancreatic enzyme)  which was actually my idea, on a hunch. It was a shot in the dark but it worked. I was on a path to gawd knows where.. somewhere scary... but herbs and magick and love and prayer - and Creon - brought me back.
Thank God for my own intense intuition, and for those who helped me and supported me. I think I have some more time now but I am not nearly out of the woods. My heart still acts weird as do many things. My neck is becoming unstable, my lower head pressure is rising. I know I'm developing a full chiari and AAI instability ...Tick tick tick be on my side. God be on my side. Luck be on my side. Or let this happen as it is meant to happen and help me not be afraid. THIS NEEDS TO STOP HAPPENING TO PEOPLE. There will be more deaths. This is like a modern black plague of a different kind. I hope it will end. We need the Renaissance. Let it come soon. Pray. So Mote It Be.
 - Rosie G 

Why are many GI doctors shunning EDS patients?

Written January 2017
I'm feeling better than I did yesterday, especially with my digestive symptoms have been calming down the past few days. I'm still not so great in the neuropathic and strength/energy department, but maybe a bit better. I'm not as nauseated today, as I have been. In terms of the gut stuff, I am thinking maybe there was a detox reaction to my efforts after all ..but we'll see. Interventions are important when needed (feeding tubes etc) but recovery is still always best.
It's a good thing that I, along with many and most other EDSers out there in most parts of the world where care is practically inaccessible/unavailable, know how to be my own physician/nurse/dietitician/naturopath. Herbs, homeopathics, very selective diet, etc etc. I also must credit my friend Amy, for her key life saving tips here, and for suggesting the regular consumption of bone broth. All this is incredibly hard work when you are systemically ill, dealing with crippling pain and physical debility, fatigue, and autonomic nervous system dysfunction (dysautonomia.) But, between my husband and I, we manage. Sometimes just barely. In October I was 95 ibs at my lowest, and very sickly. I have managed to gain about 10 ibs, though recently I think I slipped back a couple ibs. Very recently though, I'm back on the mend. So we'll see. I've been on thin ice.
Gastric problems - some of which may end up requiring interventional feeding tube so that the person doesn't die from not being able to eat, is very much on the line with many EDSers..and gastric symptoms are debilitating and cause systemic illness - your immune system is in your gut. There are multiple causes with us (infections due to immune compromise and lack of motility, mast cell disease in the digestive tract, multiple allergies/sensitivities, severe motility dysfunction due to neurological reasons) but, one of our biggest issues of all is the gross and in fact appalling lack of gastric specialists with knowledge of EDS and it's co-morbid complications, and/or willingness to help.
This is a worldwide problem. In fact should be deemed a crisis, because it essentially is. Plus, it's just inhumane. This EDS patient related human rights issue is just as serious as the lack of neuro doctors and surgeons. You need your digestive system to work to survive, right? Like, come on, people. Ugh..I made a video about this which I have not yet had the forks to edit ..
It was refreshing to watch Dr Louis Liu's video presentation (EDS educated and specializing gastroenterolgist Dr in Toronto.) I also posted it on the Quest page. I seriously feel like burning many CDs and mailing them to all the gastric specialists all over Canada and writing on it with a sharpie "Please Watch." Really! .... A close friend of mine right now has been suffering in agony for days with severe gastric pain which could be related to pancreatitis (and due to our problems with mitochondrial dysfunction, some of us can have or develop pancreatic insufficiency - that's why I take digestive enzymes, which I'm unfortunately dependant on.)
Even though my friend suffers in agony like this, with a very small list of tolerable foods (similar to my list actually) she too has been continuously refused gastric doctor referrals. What the?? Oh but it's common. In my case, the two doctors that try to support me have tried to refer me on to gastro doctors, twice, however, I have been refused help by both of them, and because of that, I might have a chance and case for getting out to Toronto for some help from the man I watched speak in that conference. Gosh wouldn't that be great. My internist said he'd try to refer me.
My point in illustrating the former is that the lack of gastric doctors willing to help and educate themselves about EDS, given what I just described, is a ludicrously inhumane healthcare dilemma. Honestly, people with EDS need care from gastric doctors so badly; Why are so many gastric doctors shunning EDS patients? It's not right. It's not ok. It needs to change.
 - Rosie G 

Reaching for simple tasks

written January 2017
I love the way my hair looks when I blow dry it quite extensively - but doing so yesterday caused me synscope (yucky BP/hr numbers a bit off in spite of meds and water, and fainting/shakiness/hard beating heart.) I had to put on my reiki music and lie flat and get calm/breathe for a couple hours.
I've been warned that as EDS autonomic neuropathy issues, which could be due to the compressed brainstem and spine, get worse, reaching and putting arms above head for any sustained period of time is a trigger and could be unsafe of done in excess. That's definitely been what's happening to me lately. It's very crippling, to have a problem with putting your arms above your head and reaching at all. You don't think about how often one needs to do that to function day to day, until your ability to do it is diminished. Forget the hair drying, there's also just feeding oneself ie. getting dishes, reaching for supplements..

I have to become more conscious. I'm going to have to order a reacher...and I've got to figure out something when it comes to my even washing it (maybe one of those clawed back scratchers could work.) I have to be so careful in the shower washing my hair, if I'm too gruff I antagonize my arm circulation and/or accidentally move my head, since it's a bit unstable. If I do that I could set off a bunch of neurogenic/autonomic symptoms. I recovered yesterday, from the first bout.

Actually, I went on to be able to do a bit of dress up and music practice for about 90 mins, which I was really proud of myself for being able to do. But of course that pushed it again, then I had to do the same thing, get calm, lots of water and salt and coconut water to replenish electrolytes and glucose which my messed up dysautonomic brain burnt up exerting. Had to lie flat/get calm. Then I watched a House episode and went to bed..and I don't feel terrible today actually. I feel a bit stronger actually, and for some reason I digested my food better. But I dunno, am I putting myself at risk at least with the hair drying thing.. maybe I need to just do the front quickly and then leave the rest dry wavy, or I could use a clawed back scratcher as a reacher for that too. Bleh :/
 - Rosie G 

Appointments, small steps ...

Friday March 9, 2017
I had a pretty successful appointment with my internist today (same time as my infusion, how convenient.) He will write a supporting letter for my info package/file which will go on the front of my medical chart when I am finished, and I'm getting close to being finished. It's due to go in monday lol. I'm feeling positive about this, and feel closer to the peace I know I'm meant to find so I can do the things I came here to do.
However I'm feeling scared in the face of investigations we need to do, to rule out concerns about serious things..Some of this will take time, because I have to wait to get into a gastro Dr especially to find out what's going on with my pancreas, and gallbladder too (I want it out tbh, it's hurting me, thank god for ox bile pills for now) so we'll see what else turns up on tests he's ordered..many tests this time...some toxicity tests, a couple infection tests, and insulin level which is very important to know because of my pre diabetes and full diabetes risk, if it's abnormal it'll tell the type of diabetes.
Ammonia and lactate are being screened. So important to know if organs might be showing signs of progressing mitochondrial disease and/or if I have chronic liver disease. Mito is a real concern and I think i'm going to have to learn more about vitamins and supplements to arrest it, especially if the ammonia and/or lactate are at all elevated. I'm going to cry out of relief if they're not. But I believe in my heart that EDS, especially when it's systemic and internal like this, is likely a form of Mito. Actually, Dr Kendall told me so on the phone, last year. She said that's what the doctors in the know are saying. Mito is a spectrum and I used to be on the milder on of this but now things are "getting on", partly thanks to shock and trauma..but I need to know where I stand, in the middle, nearer to the end? .. : '' /
So I have to be fasting for this so I'll have a ride and Nelson will come to help me monday morning (moving while fasting is so hard for me.) *Breathing in and out* we're taking steps towards identifying and/or ruling things out so we can know what may be treatable if caught on time, or not treatable with only palliative management, so I can know more about what my prognosis may be looking like here. I just need to know what/where and hope things can get ruled out or identified, so I can psychologically prepare myself and manage best. I have a feeling that I'm in the middle. Ultimately terminal maybe, but if certain things are treated I'll have some time. Maybe a fair bit of time. A decade or two. I shouldn't be making predictions like that, but that's how I feel in my heart about it. I was able to turn back the clock after that terrifying october mayhem, with hard work and support from others too. God working through people .. I will update more when I know more soon .. whew I'm #outofspoons and #forks right now .. ; p
 - Rosie G 

Not Obviously Awkward

I love not realizing 'til after the fact when I use words, phrases and expressions in an odd context/odd order of description, as well as very direct ...and then it occurs to me how it could get incriminated ie. pathalogized. Eg. "music artist and writer on a unique mission" apparently could equal "sick attention seeking histrionic who thinks she's special and is making a spectacle out of trying to be a music star when she's but an ailing crip."
Most of this is based on the unprecedented use of the word "unique" actually ... but of course, I'm not looking at it that way when I say it like that. I make my own use of expressions, but because it didn't obey a precedent, it's wrong, and I'm wrong, and I'm a bad person, as good as cannon fodder, in society.
This is why I'm 31 and seemingly dying, though with a bucket list goal to go out epic and DO something to change it for others, so they don't have to be 31 and dying too. This is what the "unique" mission is about but, this is ultimately a social faux pas. It was an attempt of mine to semi soften things, in order to not sound too "arrogant" or "bold" but then, I just sound somewhere in between trying to be calculated, but silly. So then I'm trying, and I apparently made it worse ...
Only to the astute would this apparent faux pas be recognized as social awkwardness, because it's ominous social awkwardness, not obvious enough to be obvious, just like in the video "Not Obviously Obvious." It is indeed an incredibly difficult place to be. Curiosity kill the cat - Naivete kill the nightingale ... eventually...but I still have my voice..
As not obviously awkward as I am, I still try. I carve this sculpture at the pace of a snail to get it right. Hopefully it'll get done in the end.

CPTSD - on Rare Disease Day

Feb 28, 2017

It's #rarediseaseday and thanks to the combination of my illness with CPTSD, and fresh scars caused by a medical establishment that mistreated me for years before my #ehlersdanlossyndrome and #dysautonomia diagnosis (and even after it too).. I am struggling to find words to make a video, or say anything, really. I have been having to pull back, to try to mend from the inside out lately, and with this, it's hard to find the words. I am doing better gradually, but it'll take years. Because my illness has become so profound due in part to CPTSD and unethical treatment, my lifespan is likely shortened, and my ultimate bucket list goal is to be at peace with the CPTSD, before I go.
I don't know whether I'm going to make a video today or not today, whether I'll be able to by the end of the night.. but if I can say just one thing I will say that society, and the medical establishment especially, needs to wake up and learn how to treat people with CPTSD better.
People with CPTSD have all kinds of maladaptive reactions and all they do is get judged on top of judged on top of judged. It's like continuously ripping a scab off of a wound trying to heal, interrupting it each time, until scar tissue is deep. Until it does things like shatter someones mental health for life, and/or cause them a chronic physical health condition, by waking up a persons' genetic predispositions to disease. Particularly things like MS, Lupus, several autoimmune and connective tissues disorders' development and worsening has links to prolonged and repeated exposure to trauma.
Much of society needs to back off and let up, and hone some compassion. Learn about CPTSD, and learn the difference between pathological personalities, and CPTSD. There is a big difference, in fact they are opposites..though sometimes opposites seem similar on the surface. But you will often find that the person with CPTSD has been a victim *of* a person with a pathological personality - So it is the most hurtful thing in the world to think of and accuse the CPTSD sufferer of being the person/s who abused them, just because the person who abused them was perhaps a poor social role model for the CPTSD sufferer.
In order for the trauma to stop perpetuating, people must think objectively and have some compassion, particularly medical personnel and those in the helping professions. Because at the moment, especially for autistic people, people with rare/complex illness, and (get this) people with pre-existing trauma, they are doing the opposite - causing CPTSD and/or making it worse, for the most part, other than the times a fair few get lucky. It's not ok. From one survivor to another, I'm asking the world. #supportus #cptsd#traumaawareness #compassion #helpusrecover #dontjudge #ethics#humane #itsnotok #wakeupsociety #wakeupdoctors #wakeuppsychiatry
Check out the video What Is CPTSD from Poking Holes Facebook Page
- Rosie Guedes

DAO deficiency

DAO deficiency. This is a strikingly fascinating yet undiagnosed problem which is responsible for many's chronic health ailments. Apparently DOA deficiency is often the culprit in terms of migraines, gastric problems (especially IBS) and fibromyalgia-like tissue pain. The organization responsible for discovering this and helping people/increasing awareness resides in Spain. So, could you have DAO enzyme deficiency? I wonder if I do. It's a little different than mast cell .. it sort of creeps up, and depends on the amount of histamine ingested at once, and in this how severe the persons' enzyme deficiency is. DAO, by the way, is an enzyme that you need to properly break down and metabolize histamine.
The good news is that there is a supplement, you can take DAO as a supplement! What would be cheaper than paying for an exotic medical test would be to order a bottle from amazon or something, and cautiously take a capsule maybe for a few day, and see if you feel any better. If you do feel better, lack of ability to break down histamine properly is the culprit for your food intolerances, gastric symptoms and such ..
.. If you don't feel any better, histamine is not the source of your intolerances, and it is more due to autoimmune antibodies or Hyper igE syndrome, and other autoimmune and/or deregulated immunity disorders. For this one would want an autoimmune medication which is tolerable for them (careful, many are quite harsh, but depends on the person) or, Low Dose Naltrexone (it's an immune system moderator - much less harsh but doesn't work for everyone apparently, though does wonders for some.) ... I do wonder if I may have this ..
My mast cell testing came out mostly negative in the blood, and one was inconclusive, but I seem to respond to benadryl when I feel really bad, and I seem to be improved on quercetin supplement (a mast cell stabilizer.) It seems as though I need to have a build up of exposures to histamine. Though I am not sure, because the current query leans towards my problems being autoimmune and immunoglobulin anomaly related.
However, the easiest way for me to find out is by trying the DAO supplement and seeing if I feel any better. I think it's worth a try, and I don't say that about just anything. The result of that "test" would give an important answer as to whether my flare ups are histamine or autoimmune related. Important question answered.
- Rosie Guedes

Another kinda bully ..

A little story about another kind of bully:
Unintelligent lefty extremism can be scary, and is actually destructive. This bleeds out in so many ways, most of which many people do not consciously realize. As a more extreme example, it can results in scenarios such this one:
A man is cringing, amidst a flock of loudly, angrily squawking seagulls (people) with his hands up in defence being like “No - I am *not* racist, I’m just saying that the woman shouldn’t be allowed to beat up her kid for rebelling against her and cutting her hair short, although it is against their religion and tradition - because that is illegal in this country, and child protection workers should not give her special treatment purely out of fear of looking “racist.”No, saying that doesn’t mean I am racist, I am not! My wife is black, remember?
..and no, I didn’t say I was anti-trans - I’m just saying that ___ appears to be having a full on mental health crisis with untreated bipolar disorder, to the point where this person is on disability and unable to work (due entirely to mental, not physical illness, that is) and a strong history of identity issues. Therefore they may want to get some cognitive therapy, get emotionally stable, and re evaluate their decision, before making a transition. No I am not anti trans - I know someone who went through counselling and psychology to make sure she was indeed transgendered, and all the processes of a gender transition, rationally. She is stable, working as a paralegal, has a partner whom she shares a home with. Through the right counselling, time and work, she is reasonably recovered from emotional abuses she endured growing up due to having critical parents and feeling as though she was female not male ..
Furthermore my suggestion that you should get help and get stable before making a transition does not warrant your abusively screaming at me that I am being “anti trans” when I am not. Most important of all, being trans is not an excuse to scream at me, nor to tell me that I cannot stand up for myself against abuse from you. “
But of course the man raised his voice as best he could without being violent back, amidst the flock of angrily squawking seagulls, none of which heard or registered anything he was saying.
The End.
#moderate #centrist #notleftwinged #notrightwinged
- Rosie Guedes