Friday, June 30, 2017

To the nines, for me

It is angering when you're battling illness, having a precious "feeling a bit better" patch and thus more #spoons, and during those times you try to have fun, to benevolently self medicate it/celebrate it to the nines, dress up, do make up, nails, feel good things, feel good about it and snap/share some pics .. But then, some ignorant, insecure cynical people try to rain on your parade. They act like you're being "arrogant" and even narcissistic, because you're trying to "soak in" your good/better day .. because you know you'll have a bad time soon, and lose it again. I try to dress nicer still, in bad patches too. That doesn't usually happen though.

Dressing nice makes me feel better because I love fashion so much. It's art to me. It's expression. It makes me freaking happy, contrary to insecure cynical idiotic beliefs, it's not to "rub it in your face" and parade around superficially. It is for my own personal enjoyment. Ugh. I just have no patience for ignorant and contemptuous people anymore more. If they only knew how disrespectful there were being, based on my true situation.

Why should I not have that right to dress to the nines when I'm on my better days especially, and it makes me happy? But I seem to be a real target for the ugly wafting "jelly" energies that can come about from that. I can't let it get to me - I need a better mental shield to block it out.

Frankly, my aversion to this (I am sensitive to energies and easily pick up on it) has played a role in producing reluctance re: my music art/modelling aspirations.. but I resent that too. I feel done with it. I need to "let it go" as Elsa did. Really. 

In retrospect, the same goes for being idealized in this "OMG Wowww so Great/Perfect!" kind of way. I don't know, that cab make me a bit nervous too. I feel like the bar gets raised too high in terms of expectations, and that if/when I'm in a bad patch, I won't be able to live up to it. Well I suppose I could just not show myself in a bad patch..

Being raised by a borderline PD parent, who would switch from love to hate, and being treated the way I have sometimes due to being attractive, and experiencing that sociological "love/hate" double-edged sword attitude in which society has towards attractive people.. all this has probably caused me to be more sensitive to this. I hate it. I wish society wasn't so damn shallow. If people could only me more objective than that .. and of course I can never call it out, even if my point is purely logistical, without being small-mindedly accused of "bragging." Ugh!

I guess experiencing polar extreme reactions from people, even when they're on the "up" side of that, can cause me feelings of ambivalence. This is why I like to be defiant and deep, in terms my style. It makes me feel like I have some control over this. Like, I can "dress up to the nines" as I crave to do, but it's gonna be in my way, not in a more "Barbie-ish" mainstream kind of way. It is slick sure.. but in my way. It expressed my personal creativity and meaning. This is at least comforting.

It's pleasing to hear compliments, I mean, it's normal for a lady to like that - especially if she's living in a difficult and painful situation, as I am. It is a nice diversion from my immense pain and suffering with this wretched illness.. but it can make me feel nervous too. Sometimes I may feel anxious and wonder "is that all I mean to people? How I look? How I look "hot".. I can sometimes experience this sort of existential-crisis-born kind of anxiety from this. This is all depending on how things are worded and delivered I guess - but it sometimes conjures an "oh my gawd - I have to keep living up to something BIG all the time.. can I .. and is that all that means anything?" Alright I'm getting tangental now.  

Really, the only way to let this go is to just do it for me .. because like it, because I'm having fun, and feeling personally sensual .. Finding my personal sensuality again, in the only ways I can, to rise above chronic pain. Forgetting about trying to be impressive to others, 'cause what matters is, do I like it? Am I having fun, and expressing myself, creatively. It's like "my body is a poem."

I need to block and moderate the "taking in" of both extreme compliments/idealizing and the opposite. I mean, I am grateful for compliments and happy when others are genuinely enjoying a picture of a creative outfit I've put together, and I express gratitude - but I reflect now that "taking this in" too much could be, in a different way, just as unhealthy as taking in the contemptuous "jelly energy." It is ironic what I'm saying I guess, when I'm saying "do it for me" ..it sounds more "selfish", but in fact, it makes it less. I hope I make sense .. 

Maybe celebrities, especially females, who end up having issues with drugs and alcohol get psychologically affected in the ways I just describe...

I got diverted and perseverating a bit there. Sorry .. 

The other piece to this, the one I originally mentioned, is that it's super angering when people, who are not battling illness and don't understand the painful, cruel nature of what living with a nasty chronic illness will do to the mind, disrespect one's coping methods. They do not respect, let alone appropriately recognize, the self-caring ways of coping some do - particularly women. Dressing up super pretty, and I mean going "all out"; dolling up to the nines, dressing sexy, even doing some Cosplaying.. it's one way of coping that some choose to use, particularly people who are artistic and creative. I am one of these people. Why do you think they have those "Look Good Feel Better" workshops for ladies battling cancer and such.

For me this happening on an even more personal level. I'm getting passive aggressive jelly hatred from somebody in my sort of personal circle so to speak (and it's been happening for years.) She has no freaking clue what it's like to be in my shoes, and is really (seemingly) too selfish and immature to grasp it. She has a fairly juvenile-envy born view of me; a projection of her own insecurity problems..and in this, she's taking it out on me, projecting her own crap, and she tends to make passive aggressive snide gestures in which suggest that I am full of myself, being arrogant, and princess-y. It's an immature and cynical lens to view me with, and frankly, it's downright rude, inconsiderate, disrespectful, and angering given my painful circumstances. 

It's just been about "oh there she goes again being arrogant and about herself" .. it is a total deflect of her insecurity. She keeps energetically deflecting it onto me, and this has actually gone on for year. It's to a point where every time I let back in a connection with her, it always becomes like this, she gets passive aggressive and snide, like this. I'm highly sensitive, so I pick up on it. I have to try to not let it piss me off too much, because I have (finally) a real sense of confidence. I know who I really am and what my true motives are. 

I didn't always have such a clear sense of self, I was badly affected by this exact thing, on the part of people like this person I'm talking about. I was highly affected by the "jelly bullying", which is often a type that goes for hurtfully attacking the character. I walked around with my head down, apologetic, ready to get abused to be better liked. I was a victim of gaslighting, and in this, I allowed my self esteem to be affected and to be hurt further. 

It makes me sad and angry that I was damaged for so many years this way, before I really chose to "rise above the bully." I wrote a song about it describing the consequences of what happens if you don't - the damage that happens when you turn your pain onto yourself - and affirming why it is necessary to do, to reclaim one's own sense of self respect. 

I now know who I am, and letting this person back into my life, on my facebook, is not going to affect me the way it did. I cannot let her get to me, and feel angry and defensive. I will not pick up on her projections and take them to heart, just like I will not with others who hold similar intent (albeit somewhat inadvertent and a projection of their own problems) and contempt. No way. 

I am extremely challenged with my health now, and very likely facing a shortened lifespan. I've allowed myself to be hurt enough, but now, I'm going to "let myself play" full stop. 

Recently, I wrote this really cathartic "Declaration" (to bullies/trolls psychic attackers.)

"Jelly bullying" is almost always about the bully's problem with themselves. In this, it is selfish of them to lash out on someone else, and attack their character, simply because they want something that person has in which they can't have - but alas it happens all the time. We are really powerless over others' and their ability to recognize their own issue for what it really is...and regardless of whether they'll refuse to recognize that, I know it when I see/feel it. Therefore I will not take on their sh*t. 

I have things to do. I have a bucket list to check off. So too bad for her, and others' like her. They're ignorant idiots. They can't hone much compassion when they're stuck in the toxic and narrow minded filth of their own jealousy born emotions. They don't see objectivity. They don't have respect, or compassion. Self loathers lash out .. How sad for them..but it's not an excuse to be abusive to others, or for others to accept their abuse. What's even worse than accepting their abuse is (a mistake I've made) engaging in the game of "jelly competition-ing." That lowers you to their level. Toxic and low vibrations. But anyways..


I know who I am and what I stand for. I have a right to be at peace and with self love, and enjoy the rest of my now very painful, and likely to be shortened life (in part thanks to allowing bullying, in various forms, to hurt me so much, over the years.) Would I take being this crippled and ill physically over being that pathetically character-crippled? That's a hard one, but in congruence with the stars and planets, I think so. Moving on. To the nines. For me. 

Not comparable.

In this world today, so many people claim to be oh so super liberal, they passionately assert how important it is for social minorities; ethnic and religious groups, LGBT folks, to be accepted and respected. That's good, yes... but what about when it comes to medicine. To medical patients. To medical zebras? We are a minority in the health field. Due to this, we are getting badly discriminated against and treated badly, suffering with poor life quality, and even dying, often needlessly. If that's not an example of being tragically marginalized, then what is. Think about it. How would you feel if you were really sick, but because you weren't really sick in a typical way, your symptoms, your illness' serious and debilitating manifestations don't count - and thus don't count to receive the right help, your need for proper treatment doesn't count - because you're "Not comparable."

In my current situation, being compared to horseys once again is detrimental to me. On top of other major aspects to my illness which I have to battle on a daily basis, I am being dragged down so badly by this gallbladder and GI functioning issue. I have done all I can, I've been suffering for months, at first with some improvement with my own at home hard work - but now it's getting to a point where I just medical treatment. I think I need my gallbladder out. I feel this is so (or, something similar is wrong - a block in my GI tract in that region, etc.) and it is beyond my ability to do something about it. But I'm stuck on a long waiting list for a GI doctor and I can only hope that once I get to him/her, they'll listen, and understand that I'm a zebra, and that I really need help. I can also only hope that I won't have some kind of emergency before that time, though this is possible. So many times before it has happened this way for me. It's russian roulette. This time though, I depend on really getting help. I even made my internist aware to a point where we have a back up that if i am not listened to by a GI, he may have to intervene, and help me seek out a second opinion somehow.


Being given tests that don't help me prove it needs out, is so unhelpful. It only further "disproves" something that badly needs to be proven, if this makes any sense. It's frustrating to be more in the know" that those who basically have power over me, in terms of decisions on things like testing. I know that alkaline phosphatase is not a good indicator of gallbladder function for me. Because I'm a genetic anomaly a bit, like zebras are, I'm practically a dwarf (petite) with brittle bones (bone density sparse in other words) and GI absorption issues. My ALP baseline is probably lowered. ALP is lowered in people like me. But that's empirical .. we don't have much in the way of formal proof. How unhelpful. So they can't factor things like this in, and as usual, I slip through the cracks because what my body does isn't well comparable to what the "usual" bodies do. Health problems. Not comparable to textbook ranges. How unsettling is that? What do you think that can cause? Not being believed. Not good .. 


This is how we "unicorn zebras" have various detrimental health problems which slip through the cracks of recognition. It is beyond frustrating, but more important, angering and exasperating to think about, because it can be dangerous. Textbook ranges are created, and they're dangerously "boxed in", not taking into account that some unusual body types and unusual conditions will not be so comparable to these ranges. The actions within these more unusually running bodies will diverge. Their base in one of a different "make up", and so their ranges will be divergent. 


It's so rough to be this person. To be "physically divergent" because essentially, you may fall through on ability to access safe and proper medical care to address health problems. It's like I said in "Special order cookie" .. and when people are served with business in mind, the more unusual people (not a majority) will not considered not very "viable" customers. It is unfair, and it is discrimination, but somehow it's all acceptable within the functions of the healthcare biz. Because you're that unusual cookie, the information tables don't even fit your body type so well...because research in which produced those information tables was tailored to the "majority", the horses, not the zebras. How safe is that? Not too safe .. 


I have fallen through the cracks over and over, since childhood, due to being compared to horses. I have rarely had health problems which needed addressing actually be addressed properly by medical services, other than in an emergency...and when that's happened, it's usually been super traumatizing, and can be dangerous. It takes while to find out what is happening to me and how to help, because I present so unusually of course. I've often had to be the one to try to figure it out, and yes, I have had a few doctors who have been supportive of me, who have been allies, who do admit that I am very zebra but clearly unwell and in need of help. 


I am at least grateful for these doctors, and because of them believing me more so, even when they don't fully understand me (well it is not obvious that I am unwell, too) I have finally been able to access some services, ie; Help with prescribing meds and getting weekly hydration. These things do not cure me, or fully address my real issues, and far from it - but they keep me safer and keep my quality of life from being at a near zero. Without these few doctors who do believe and support me more, I wouldn't have been able to "keep grip" on the cliffs' edge I have scarily found myself clinging to a few times before. 


I should stress that ultimately, it is not the doctors' fault a much as it is this messed up medical systems, which ultimately prioritize business over people. However, many doctors will engage in unfair, abusive and "zebraphobic" behaviours (read about "zebraphobia" here) such as blame the "rare" patient, being negligent and abusive, refusing tests, referrals, meds, calling in psychiatry etc.  These doctors are scared to admit the truth; that they cannot do more for this genuinely sick patient, because they're both not allowed to and because they don't understand how to. They have their egos involved in it, and that is their primary concern, themselves. In this, they lack compassion. However, some braver, more empathic and more humble doctors will admit that the patient is in need of help, albeit difficult within the limits of the current medical systems, and they try their best to help them. We must acknowledge these doctors for sure. But even still, we're at risk. 


I'm at great risk to fall, and what if, one day, I really do. Something really major happens. I am at risk and I know this. I wish I didn't know what I do know, about my condition. What if one day it's so bad I can't be my own advocate anymore? What if I'm so ill I'm unable to communicate and think properly? I feel like "I only got me"...So what do I do if I don't have me? How would you like to be in this position? Since things have become more profound for me, and I'm really disabled now due to progression of my illness (which couldn't be prevented due to the above reasons) I could realistically end up in that position now or in the near future. Especially if I cannot find a way to access the help I need in the eastern united states. 


Sadly, and even more sadly justifiably, I've become entirely skeptical and cynical, that I'll even have a dangerous health issue recognized properly and/or on time. Again, I've ended up having to somehow play guessing games and be my own "witch doctor" to turn around serious, concerning and sometimes scary flares, incidences that could be related to several things like infection (my body reacts weird to those too), immune system reactions, nervous system reactions, injury reactions, etc..


But I can't do that in a major emergency though. I can't be my own paramedic if I were to be completely out. I have been, in the past, my own "paramedic" at times when I've been close to "out" but not quite there. It was operating from a "better not reach 'there'" adrenalin state. It has been so traumatic. I do not wish this experience on my worst enemy .. 


It's a game of russian roulette for me. I have to hold hope that the right fluke might happen to help me out and have guardian angels watching my back. I wish I didn't have to live this way. I think I'm lucky to be alive, and I have to be a woman of faith in this situation, or I really could not go on. I have to believe I am somehow being protected. 


Because of this, because of being that "unicorn zebra" type, and being met with not only lack of help but at times (especially in the past) judgement, neglect, and sometimes full on abusive and cruelty, I I am now "battered." Currently I live in very severe pain with very compromised energy, physical strength and mobility. I have suffered through a series of "stroke like" autonomic episodes for in which I had to pretty well help myself, get extra fluids and electrolytes and my meds, call family friends to help, and mostly ail from home. Each of those episodes somehow damaged and weakened me more, and yet still, no formal testing and/or proof as to why. 


I am now very disabled and compromised, at 31 years of age. I'm life limited, weakened, in way more severe pain than I even look. I miss out on a lot. Doing little things, even that I enjoy, takes massive effort to do without hurting myself. Using the sports tape to keep my spine together has helped the most, though lately, I've begun reacting to it. I am waiting for a new medication to kick in and hopefully work, and I'm waiting receipt of stuff we ordered which is marketed as "hypoallergenic." We even bought a medical tape barrier from Rexall, which we'll try to use on my skin first. We'll see if it works after my skin heals up a bit.

Even after all my efforts, the special diet, supplements, herbs, tape and bracing, etc.. I'm not entirely sure how to really turn this around. At least enough to get stable, to have some reasonable quality of life, to not be so severely inhibited by pain, fatigue, risk of injury, etc.. I do get out for short bits if and when I can, I have pushed hard to do that and "soak it in" - but it's very limited. The only thing worse would be being totally housebound ... and some of us are, it's brutal. I am currently in the second to worst category of "severity" that one would be in, and it hurts way more than I can find words for. I am in such grief about it. 


I also want to emphasize that I am not the only one. 


Money stands in my way from being able to see those very few specialists who can actually help me. If I weren't such a zebra, if my body weren't so weird, it wouldn't be like this. I could get medical care in my own country. So yes, it blows, it's brutal being a unicorn zebra. Yes, I would give anything to just be a physical "horsey" with physical "horsey" (typical) health issues, that are much more easily "help-able" in my own back yard, without requiring tons of cash I don't have, to ultimately save my life. I hope that one day it'll change for people like me, because it needs to. I hope the healthcare field will hone needed finances and zoom out, change attitudes, think bigger, think outside the box, advance, research etc. In order to be able to serve all people, not just "majorities." 




#
unicorn
 #zebra #whatiwishididntknow#beingawarecansuck #myproblemsdontexistbecausetheyrenottypical#allthewaytodeathright #stuffthis #discrimination #minority #marginalized #ehlersdanlossyndrome #dysautonomia #raredisease 




Saturday, June 24, 2017

LGBT and organized fundamentalist religion; Not ideal still, but subtle changes

A young girl makes a speech about being gay and loved by God anyway, because he makes no mistakes. She is apt. But, it is sad that this happened in the way it initially did. She was escorted offstage. Her mic was cut. My heart breaks for this sweet and sharp young lady. She is brave. I would have like to hear her (finished) speech. 

It's an interesting story, though, in terms of the reactions in the aftermath. There's some objective discourse that has happened, at least. This shows that even some religious fundamentalists are seriously reflecting on this issue. They're gradually coming to the realization that deeming people to be unworthy, bad and even evil, simply due to their sexual orientation preference, is just downright stupid, hurtful, rude and insulting. This change is evolutionary, and so I hope some people will read this in a more of a "glass is half full" light, to see that although the situation is not yet ideal, and certainly has a ways to go, it still subtly demonstrates gradual change. May this event bring only more attention to the issue at hand here.


Rosie G.

www.bionicrose.org 

Journalling; Rough patch

June 23, 2017 (FB statuses)

My kidneys seem to be a little bit angry right now, this angered my immune system, and I started reacting to my tape, and had to take it off .. itching like mad it's f***ing annoying. Skins' out in bumps in spots .. That's gonna look hot for pics. Yay chain reactions. Aether show me what the way needs to be for now until this stuff passes. I'm just in exhaustion from trying to get all my ducks in a row post cheque, to get on with completing project/launching. Have to ride this rather psycho Stallion to the top of the hill.

This stuff looks pretty awesome and at a reasonable price. I need something, as I can't have nothing, tape is the only thing standing between me and a potential lapse to a point where I can't move forth with my plans. My immune systems' beating me to a pulp right now, between antibiotics, mast cell threshold break due to latex and heat, and the irony of my spine shifting all around again due to having to remove the tape. On fire, even eyes burning, inflamed and nauseated, bad head pressure etc..feeling mostly anti social right now.. lonely.. but then don't want to talk about what I can't find words for without just re-triggering and pissing myself off and being a downer. I'll be out for the most part. Recovering my skin for a couple days with hydrocortisone cream, back on low histamine gruel, then I'll have to expense the nasty 24.99 for a small role of KT waterproof sport latex free, and hope the two tape ups I'll get out of that will last while I await an order of this stuff, which looks like the same thing for 60% less. Hope it's true to it's word. Aether be with. So mote it f****ing be ...

I'm trying to get things done while bedridden, pounding and swooshing head, burning stomach, nausea, spinning around me, aching bones, untaped (including hands) punchpunchpunchpunch .. 
 But hey friends don't worry too much about me.  I sound a little domesday as I've slammed rather hard into a rough patch. I'm just doing too much I guess (that happens with us) and maybe not watching my back enough. Several factors. Have to reflect and learn. It happens easily in a situation like mine because it's so tricky - so many issues to manage .. we have to be our full on "medical and naturopathic team", and sometimes a domino gets knocked. Prayers and/or well wishes welcome. I intend to go back to work from bed now, and if it gets real bad, shut er down and watch some Netflix or sleep till my body recovers/repairs. That all usually works. blessed be. 


"Waterfall" speech

I have a significantly harder time doing speaking videos, and speaking in general, compared to how I used to be. Before, I could translate, structure .. Now, it just kind of "falls" out of me in a more disorganized fashion. In speech that is. It's getting harder to organize my speech, and in relation to Chiari malformation/CCI symptoms a person in a support group once described "talking like a waterfall" .. that's sort of how it feels. I used to have this problem a little, but now, it's more profound. Frustrating. Lots of editing/jump cuts in videos. I've been putting a few vids together but I don't think I want to do this principally/ Things can still can look good when finished, but this is just really fork heavy. I don't know if I can do too much of it. Other stuff I must do will suffer.
Other stuff I do, also, is not as affected. My music/arts, and oddly my writing (blogging) has become more focussed, structured, and succinct, than it was before. It used to be more of the opposite. Weird. So I do think focussing on music/arts in person/fronting it with a face, and blogging for the activism, is best. Like a moth to a flame I try to do videos, but I think after these few I'll have to put a nail in it, and limit it to like once a month.
I do think the "waterfall speech" i'm experiencing though is indicating my neuro/spinal situations' getting worse. Because I'm autistic, with more sensitive neurology/cognition in response to illness affects, this is likely to be more profound..though it depends. There are non autistic EDSers who have suffered pretty profound neurological affects too. Apparently when CCI keeps progressing it causes neurological damage along with it. I hope it's reversible. But I think I need to incorporate gentle neuro-rehab activities into my gentle physio, to try and keep the oils wheeled as best as possible. Sighs.

R.G.
www.bionicrose.org 

Don't Be A Zebraphobe

An apt comparison: So a person comes out to their family as gay. The family is traditional/religious, and disowns him/her. All of a sudden, that persons' character, what he/she stood for, who/how he/she is inside, has all become "bad" thing in others' who mattered to him/her's eyes. It is so hurtful. It's hard to not feel a sense of "I'm a bad person" ism, in this position. There are no words to describe how hurtful it is to have your family, people who raised you and bonded with since young, reject you and treat you like this, simply because you happened to have the "wrong" sexual orientation. Therefore, somehow, you yourself are "in the wrong" in their eyes... It shouldn't be this way, but sometimes it is.
Today and now, most people consider the above to be Homophobia, to be a form of unacceptable abusiveness. It is. So, what about Zebraphobia? What is that you say? How is it a form of relational abusiveness, also? Let me tell you ..
So what about if you had a serious illness, but you had the "wrong" one, and therefore, you are not cared for in the same manner as you would if you had the "right" illness to be cared for. Instead, on top of being sick, you receive rejection and abuse. Does that sound cruel and ridiculous? I think so.
Take this next example. A person feels unwell and tired, begins to fall ill, and in time, becomes disabled by it. They have many debilitating but strange symptoms that doctors cannot easily explain. We're at a time in terms of complex chronic illness, where science is detrimentally behind in terms of many newly presenting illness epidemics out there. People need to be aware of this, and that it's a crisis, and that people clearly ill with less-than-explainable/fixable symptoms should not be flagged as "horrible nutcases", but as victims afflicted by the new "zebra health condition" epidemic of now.
But instead, people, especially professionals, and also, people in close contact with the person who is ill, have to get their selfish egos involved in it. There's no direct answer, no easy fixes, it's complex to manage, to understand, and it keeps getting worse. At the end of the day and aside from all that, the person is suffering, becomes disabled, and needs help somehow, and in some way. But no - they need to blame the victim. They somehow need to start making a negative pathology of the suffering victim of the unusual illness, by perverting their character, finding all sorts of other "reasons" as to why the person appears to be getting sick.
These reasons relate to the persons' quality of character, itself. The person is all of a sudden framed as a nutcase, a selfish, awful histrionic, who is out to burden people...to "vamp" them with their need for understanding, help, and ultimately, solutions. Would this ever be done to a person with a known severe illness, like cancer, or some other more common and known illness? I think not. It's amazing how people behave when they are faced with something that is "different", in this case, a medical condition which is "zebra"(diverges from the norm) albeit very serious and debilitating.
Fear and insecurity create ugly relational cognitive distortions like this. It's a sick "survival of the fittest" attitude. Has the zombie apocalypse happened yet? I didn't think so, but many people are somewhat behaving as though it has, almost. They can't handle that they don't know something, that they don't understand how to help, and this blindsides them. This then somehow leads to attacking the victim. You would think that when a person is suffering and getting worse in illness, compassion would be the thing that should come about in response. However, when it comes to "medical zebra" situations, the exact opposite is often what the response is.
Human beings, including those who one had thought "loved and cared for" them, somehow become more like cold blooded vipers in something of a "survival of the fittest" mode, when their "loved one" falls ill with a zebra health condition. The person they once cared for and loved is now seen as "crazy, and annoying nutcase/burden" not a sick and suffering person they should try to/care to help. This is the affect of Zebraphobia.
It is both tragic and disturbing. I believe that the way in which the world "runs" today is at least partly responsible for this kind of behaviour, born out of a lack of being in touch with the core principles of humaneness and virtue. Many of us have forgotten who we really are in this whirlwind of modern and corrupted global capitalism. Again, it's somewhat "zombie apocolayptic" in behaviour, tbh, but anyways ..
So this person suffers day in and day out, with weakness, severe pain, fatigue, challenges with eating and digestion which cause lack of absorption, which then further contributes to weakness, reactive immune system that is susceptible to infections and all kinds of allergic/intolerant reactions, and in all this, they suffer with reactive depression, anxiety, mood swings as feelings of wellness fluctuate unpredictably. It's all hard on a persons' psyche. Especially when responses from those around them, who are supposed to care, are cold blooded, un-empathic , and even abusive, in ways described above.
So they change. They find ways to cope, good and bad .. but the worst part of all is that, oftentimes, doctors cannot readily explain the persons' illness and help them. Many doctors are intensely "zebraphobic" as many of us know full well. We already have to take abuse from doctors frequently, and that is bad enough...but hen, the zebraphobic reactions from family and friends add gross insult on injury! Then, it all piles up. It feels like full blown abuse and torture for the zebra in this position. It is extremely traumatic. Many sadly unlucky zebras have had their healthcare providers, family, and friends turn "zebraphobic" on them. Sadly, it happens to many of us zebras.
Many of us commit suicide, due to this treatment. We come to feel so badly about ourselves inside, and in addition, we're in a lot of physical pain, weakness, fatigue and scary unknown symptoms for in which seem to have no answers in sight. It is a potent and dangerous combination in which, not surprisingly, can result in backing someone into a corner because they "just want out." This is how suicide happens. People commit suicide in response to homophobia, and for reasons that parallel in ways, people commit suicide due to zebraphobia.
Those of us who survive these ideational feelings end up trying to do something to divert, to hold hope, to quell pain, to hone purpose and meaning in life. We do things at our own pace, from home, often in the arts, or with activism, to re-channel our immense pain and suffering. We hold onto that for dear life. I'm on of those people .. and I can tell you that doing this is not easy. Because in spite, many people, with their ugly viper-ish, zebraphobic and anti-neurodivergent attitudes, try to throw rocks at this also. These people are such ignorant minions, following suit with the current wave of zebraphobic callousness - they're mindless followers. It could be compared to hecklers during the witch trials.
It's a fragile, intricate little "pride parade" some of us zebras comprise with our "work from home" passions. It's skeleton is made of thinly webbed crystals of hope and love and strength, etched with our own individual patterns, arranged for display with the hope of making a purposeful impact, via whatever angle we do that from - whether it be blogging/vlogging, the arts, writing, music, etcetera. It an arrangement which is like a passionately-constructed shield surrounding our hurting hearts and souls - and yet - some cruelly ignorant min-twits try to attack it.
Like I said in another blog, that's not just "raining" on someone's parade - that's more like spitting on it, or even, dare I say it, pissing on it .. or worse than that ..and it's like; How dare you. Yes, some people have the nerve. It is because of Zebraphobia. Zebraphobia blocks people's ability to have a compassionate, empathic and positive view, whence it encourages apathy and hate.
Anyways ..
So for a long time, nothing shows up in typical conventional medical tests, when it comes to zebra medical conditions. Eventually, as the medical zebra gets more severe, things might show up here and there. Some of us end up becoming gravely ill, unto terminally ill. We end up in things like organ failure, losing mobility totally, or having a sudden death from a major event like a heart attack or stroke .. and then it's too late. For some of us, it is only then that family and friends see that one is *obviously* ill and start to take it seriously, to hone a little empathy. By then, it's a little too late, folks..
People are murdered by homophobia, and people are murdered by Zebraphobia. Yesiree, they truly are. Whether it be by negligence or suicide. Zebraphobia is killing zebras everywhere.

Be one more person who will help put it to a stop. Help save lives. Support us. Learn about zebra conditions, like POTS/dysautonomia, Ehlers-Danlos Syndrome, Lyme, Chronic Fatigue, etc.. Don't discriminate. Don't react "zebraphobically."
Learn to question the current. Learn to accept empirical evidence in the fact that hundreds upon thousands of people report eerily SIMILAR experiences, in spite of the specific medical/scientific confirmation as to why, which is dangerously lacking. Realize it's not a nuisance or a lie, but that it is serious and dangerous. Realize that your help is needed to acknowledge zebra illnesses as real problems. From there, people can support the notion of desperately needed research. From there, interest to hone the finances required for such research will come about.
People. Have objective independent thinking. Have compassion. Save yourself the guilt and regret you may experience later, should anything bad happen to your suffering zebra family member/friend, and you never got the chance to apologize, make peace, say goodbye respectfully. We are real. We exist. We suffer. The suffering is real. The attempts to cope are true warrior-dom. Have respect. Have empathy. Don't be another Zebraphobe.

Rosie G.

www.bionicrose.org

I can dream ...

I'm very sad to have heard news yesterday that a member of our victoria aspie/autism community passed away from a catastrophic stroke after many years of struggling with chronic health issues and trying to push through as best he could. He was only in his mid thirties. I have several other friends, dear people, great, lovely people, who don't deserve this "just clinging onto life and not living" shit. Losing their battles eventually. I am one of them too. I am but I will do ALL in my power to LIVE anyway, while I'm living. This is why I'm launching the music art endeavour in the way that I am, this is what it means.
I have so many feelings about this man's passing. It makes me reflect on so many things. The notion of seeing more friends of mine suffer similar fates. I feel very saddened, and angry, at the disgusting lack of medical care, let alone awareness and proper knowledge, when it comes to complex chronic illness. As we know, we are in a *very* dark time when it comes to this. I and many others suffer so greatly, because of this. Manageability is barely within reach, if not, impossible, and many slowly die this way until it's too much for their body and something takes them out.
It doesn't need to be this way but it is. Autistic and highly sensitive/neurodivergent people get the brunt of this because A) we are more likely to be affected by chronic health problems, genetic and environmental in nature, and B) we are bully targets within the systems that are set up not so much to help people, but to superficially help some, the ones who have the most "potential" to be lucrative customers of a disgustingly dishonest, inadequate and unequal medical system which is really nothing more than a business for profit, supposedly socialized, but actually just subsidized by Big biz ie. corporations.
If you don't have an illness most lucrative, too complex and thus money-losing instead of money making, and you cannot cough up tons of money to help yourself have a better quality of life, you are basically a soft kill. But we're more than just disposable problems, we are people, human beings, with the right to a quality of life .. what is keeping us from that? Is it the way the systems' set up? That's one thing. But worse, it's the environment. It's the crap in what we must be inevitably expose to, consuming, to turn our wheels.
We have no choice, the poorer we are the worse this is, but it affects all - except the absolute elite. The elite have choices. The elite get actual quality preventative medical and dental, and/or if they have a problem, quality repair meant to last. That'll be expensive as it won't produce a "returning customer." They pay thousands for, because they can. They have quality of life, because they can. While the rest of us are slaves, to what degree depends on financial position, and whatnot.
The rest of us are disposable. But we're not. We're people. We're human beings who want to have lives. Why can't things just be honest and not a big fat passive aggressive soft killing machine for profit? Why can't business be fair while people can be given the opportunity to live and die in dignity. Everyone's so afraid of lawsuits that they can't bring out the truth in the ways most crucial, so they can fix it ie. illness causing chemicals and whatnot. There are a lot of f** ups that have happened resulting in catastrophic numbers of illness.
Do they really need to corrupt the food supply for the purpose of making it more addictive, to maximize rate of consumption, for greed .. and people have to live off that or pay out their nose for something better. It is the way of a sadistically sly tier system. I could go on but I won't...
I won't be a victim baby. No one be victims of this garbage!! In the end we will rise above, in hopes for a New Renaissance...let's overhaul. Let's design a New System that allows people to live and die in dignity, and is not just a soft killing machine made of tiers of enslavements..
I didn't know him super well, but we hung out a few times in the group setting, when I was well enough to go out there more often. He was a cool and nice guy and a good friend of one of my very good friends. Very sad. Goodbye and godspeed my friend, and all of you who've lost your ability to survive within the machine. One day I hope it'll be different, and we'll all be free...
Freedom, I will emulate you daily, by stealing joy in whatever ways I can. No shame baby. No more! No more guilt that I'm indulging too much in it, when I'm well enough to try, and that only the elites can ride it like I will. No. Dazzle be my right and yours. No guilt allowed.
Everyone deserves dignity. Everyone deserves to reward their purposeful works with the icing of benevolent hedonism. Self sacrificial martyrdom so that other people can climb up atop you via their shoe and your head as a ladder... No. This should not have to be a requirement! We should not be obliged!
So no, it isn't ok that some people suffer. No.. the saying "life isn't fair" should not be acceptable. The fucking illuminati invented that one. Think about it .. it's not on folks! May pleasure and dignity not be reserved for the elite only. One day. This kingdom be. This land be real. The globe will live and love in peace, harmony, balancing meaningful, purposeful work with deserving pleasure.
Pleasure, joy, and fun! It is EVERYONE'S right. It is NOT only deserved by the elite. It is not ok to accept that some people should suffer while some do not. No. One day, let this be outlawed. I can dream.

R.G.
www.bionicrose.org

Wednesday, June 21, 2017

Sensibility, over subtle sexism

This is nice for sure. I mean, at first, I thought, at first, that this article was real sweet...but then I reflected further. I realized that now that I think about this, it's not as "sweet" as it looks." Upon staunch reflection, I realized that this is rather silly and polarized, and perhaps even, insidiously unhealthy.
My "devils' advocate" viewpoint here is that I don't see why the fuss has to be centred around the fact that she's a girl, and he's a boy, who was "mean" to her, while almost practically shaming and humiliating the little boy via getting so dramatic over this while putting her up on this big fat pedestal. I suppose that view could be seen as rather negatve .. and it could be too much ..
Ok, I suppose I'm being madam cynic..and I'm sorry to rain on this sweet little articles' parade, but, I'm seeing this pattern where little boys are shamed while little girls are put on pedestals. As the mother of two developing young men, I don't think I like that.
This young man *certainly does* owe the little girl he hurt an apology, but, let's be moderate, folks. I see it as an issue regarding bullying, in general. Just bullying. Parents of a child who bullied and hurt another child, gender aside, should *indeed* follow through with some kind of formal apologetic action, in general.
"Especially a girl" says the mom. Well that's sweet, but, let's not marginalize the girls as "delicate little flowers ..oh but little boys can take shit, that's ok." No they can't. They have feelings too, when they're bullied and hurt. Little boys who get bullied risk to grow up to be very angry young men, among other things. Boys tend to internalize more, and have a harder time asking for help. Boys are at risk just as much a girls, albeit possibly in different ways.
Bottom line: If your child bullied another child, have them prepare a formal apology card, present it in person, and make sure that after reflection, the "sorry" is as sincere as possible. Teach them why. Open up the book "The Virtue Project" or just give a talk on rational morale. No flowers needed, really. No sympathy brigades..no polarization for heavens' sake .... poor immature little society.
It's like; just instil respectful empathy regarding the reason why it wasn't ok to bully, use examples to put the child in the shoes of the child they bullied, ask them how they'd feel. Give them time to think about it, but when they end up feeling badly, reassure them that although they did a bad thing which was a mistake, they're not a "bad" person, and though he/she made a mistake and hurt another, he/she now realized it and has the opportunity to correct it by properly apologizing, and not repeating the same mistake next time.
Just follow through with an empathetic, attitude correction born apology, which hones the child's newfound respect for common courtesy and ethics...and it doesn't need to be on display everywhere, either. It can be between the child who bullied, and the child who was bullied. Frankly, making a "huge deal" out of apologizing, on a superficial and dramatic level, could almost backfire when the childs' older - they may end up having relationship issues due to feeling "negative" about apologizing. This is a possible outcome.
Come people, come on society, respond to things like adults .. Not teen girls on their periods. Lol.

R.G

www.bionicrose.org 

Breaking apart a family, double standards re: immigration (Good job Canada)


People need to effing communicate and have some consistency. We need rules and regulations to put that in order. From what I read about this case, the beaurocrats are sadistically punishing a family originally from a violent and dangerous area, shouldn't go back there .. and traumatically separating these vulnerable young people ages 10-18 yrs old from their parents, forcing the eldest teenage daughter who suffers with a chronic kidney disease to care for her three younger siblings, all because some idiot embezzled them and didn't file paperwork...and yet, they can allow criminal stuff under their nose all the time.
Criminal activity from some immigrants, while singling out others who are totally innocent and need a real chance. WTF?? No wonder everyone's f***ing divided and no one knows the real information. *Both* the former occurs you see. You know what this shows? This lack of consistency like this. Simple. Corruption.
This looks like an abuse of power to me, like someone just "didn't like them" or one of them, and decided to pick on them. This has happened to me, to my family, in the past. Maybe there's more to the story that we don't know, but that is unlikely - if they're going this public to try and get help. They likely have nothing major to hide here. Just a nice central american family who needs some compassion and not abuse enough to rip them to apart and to shreds. Is that so hard, Canada? Wth man.. Awful. Such a terrible thing to do to these innocent young teens/pre-teens. Good job Canada.
I can vaguely relate with those kids, being victims of idiotic and senseless totalitarianism where it is not due (and then, where it might be *legitimately* due, don't administer it - fools!) My heart bleeds for that 18 year old girl with the chronic kidney condition, I feel her pain because I have a story to tell that resonates;
The effing social services came in and arbitrarily traumatized the crap out of my family when my mom fell severely ill and nearly died of leaukemia, when I was 14, forcing me to quit school, go get work, and run away with someone 7 yrs older than me in order to escape being "thrown" into a group home. Yeah that was around the time a socially awkward girl who was trying to fit in, in the group homes, was killed by her peers there. Right, so your mom has cancer and we don't like your dad because he's a lawyer who speaks out against us, so we're gonna punish the kids - an innocent 14 year old - by trying to throw her in "juvie" .. So I "went my own way" pronto, in order to escape being punished because my family was already suffering. Wtf is that???? All of a sudden, I was forced to grow up fast...and I was already coping hard with being on the autistic spectrum and unknowingly suffering with Ehlers-Danlos syndrome. I had to pound the pavement and survive. That's was this young woman's gonna do, as the eldest child especially. So I discovered coffee,and pills, and whatever would scrape me by. I didn't know my organs were mae of "soft shale" compared to everyone else's"igneous" ones. This is one main reason I'm so ill today. I was suffering with a chronic illness and I had to push my body in totally in appropriate ways. With the autism bit, the intellect/autism paradox could have almost saved me in ways, as I knew better what to do (maybe) than an NT teen.. but with the EDS especially, it was really harmful. My poor body. Poor 18 year old girl with chronic kidney condition has to become mom to her 3 younger siblings, and get work, AND find a way to finance her medical care now that's she'd being deported to the states. I feel so much for her. Ugh so maddening!
F*ck you Canadian Beaurocracy. You ruined a young persons' life. You'll do it again several times over. That's what's gonna happen to these poor 4 remaining kids who are going to be deported to th USA, since they were born there. Eldest girl 18, chronic kidney disease she has to manage, booting her down to the states without parents... way to put pressure on that poor already compromised young lady. Traumatize the crap out of these kids and make ill of impressionable young people just starting their lives. Ruin their lives in fact. Separating a loving family. Shame, shame, shame on you Canada. Infuriating and disgusting!

Journal 06/14/17; Silent struggle, no funding available for dental work

June 14, 2017

This is a bit of a personal thing but, I guess since I shared about it before I could give an update, before I go back to never talking about it again. I don't know who remembers when I went to Vancouver to meet with that dental group at the BC cancer agency. They asked me to come out to see if they could do some better repair work for me (based on having a legitimate medical case) which would not just look reasonable superficially (for the most part) but actually function and allow me to eat better/without pain etc.. They asked me to come out so they could examine me in person, you know, really getting my hopes up. I hadn't heard anything and thought it'd maybe take more time because they said it's "complex" and might take time to "build a case."
But I went to my dentist yesterday and he pulled out a letter he had literally just received saying, without much explanation, that there's "no funding available for her case" have a nice life/day/whatever. He was quite pissed off for me too, I could tell he felt bad. He said he'd go look into it and try to get a better explanation, and call me/ifwhen. It was nice of him. I like my dentist, he really makes an effort to "get" my EDS issues. He's not an aspie per se but kind of an introvert/nerdy/empath. Really nice guy. Anyways..
This is the great thing about being a zebra, rather than something all "serious and common" to have parades and extra pots of funding of sympathy over, you get rejected like that a lot, in spite of immense suffering and serious need for help. My medical need for that dental work was huge. Very huge. Huger than many of the people they see. Huger than people will ever know. But they just threw me in the garbage after getting my hopes up. However, having been rejected re: the right help I need, so many times, I was somewhat mentally prepared for it.
When I received the news though, really, I numbed out. I could not let myself feel the pain and anger I could have otherwise felt. I just can't afford it, for so many reasons, so I detached completely. I think I need to have a cry session about it though. Like just one. Then I have to move on and continue to make due/live with what I live with. There's no other option for me at this time.
Yeah, it blows, I f***ing hate it.. but I have to detach and move forward with my plans, in hopes that maybe one day this bucket list wish will eventually get crossed off. However, the priority is my spine and brainstem, unless maybe it is found, down the road, that the dentition bit has played a crucial role for me. For now they seem to want to deny that, which is common. But I think it has played a crucial role. Only an EDS expert can really advocate for that, perhaps perpetuating a revisit to the issue.
It's ridiculous that dental isn't considered medical. It's part of your health. Teeth are not like hair. If they're bad, they wreak havoc on your immune system - you can't just cut them off and carry on. Well, you can..but then you can't chew and you're self conscious. TMJ (temporomandibular joint syndrome) is very painful, wreaks a lot of physical/nervous system havoc, and is a medical issue especially. It is appalling that TMJ is considered "dental."I have suffered in silence in this area, so bad. For people with EDS who are systemically so vulnerable as it is, often very much including in the dental area (collagens' in bones and teeth!) this is particularly brutal.
Ok, enough of this verbose analysis. It could be worse for me I guess, and at least it's not. I can smile without feeling too self conscious and that's important to me, and I can *sort of chew*, though it really hurts and I have to moderate what I eat because of that, as well as many other reasons. It's just one more barrier resulting in my having a restricted diet and thus a challenge with getting the nutrients I need. I still make an effort to. Thank god for my Nutribullet. I may have some tears this evening, but then I'll have to "let it go." Things to do, tightropes to walk.

Monday, June 12, 2017

Affectionately "aspie"

Don't tell me not to say "aspie." It's my choice. I was diagnosed with asperger syndrome. Yes I know aspergers is autism. Yes I know it doesn't formally exist in the DSM anymore. But I still like "aspie" and people still know what "asperger syndrome" means. I feel it suits me well because i can be quite glib (these days that's when I'm well enough) and, I didn't have an actual language delay, but in spite of that, I have been hurt and judged for my non language related communication disabilities. That feels very "aspie" to me.
In fact I was hyperlexic as a child, reading at age 2 1/2, albeit also partially "communication disabled", because I could go fully or partially mute, and had expressive language issues that were practically beaten out of me via perpetually offending people for seeming rude or aloof when I was actually a very nice girl. That hurt.
So then, I tried "not" to have expressive language issues, and this almost caused further pathology-making, because my "trying" wasn't quite right, and I was then accused of things such as "lying" and "being manipulative", being too "full on" and a few other things. It hurt just as much, if not more. It was like a no win almost.
I would sometimes charm, and sometimes piss off, it depended on the situation and so many factors.. but when there was a piss off, or an accusation of being "manipulative" for working hard to put on a performance resulting in the "charming" aspect, it felt so unfair and insulting, because there was really no other way for me to try and communicate. However, my technical language is mostly there, other than when I'm having illness related neurological issues.
I can seem pretty verbal and my technical language skills were/are mostly intact, but I'm bone fide idiosyncratic, definitely autistic having many clinical traits and struggles, and that makes me personally "feel" the "aspie" thing. So please don't try to take that away from me. I'm diagnosed with autism, I know I am autistic, and affectionately, I'm "aspie."

www.bionicrose.org