Friday, December 16, 2016

Journalling; Heavy heart

Oh boy. I really pushed it. Plus, I cut myself twice on the fingers, once with paper desperately trying to clear recycling, and then (get this) with a butter knife trying to cut the peel off an apple for my smoothie.. a butter knife.. Only EDS skin gets cut by a freaking butter knife..and it's all inflamed/not healing all that well. It's the least of my problems though.
I'm now done for in bed, and I kind of resent that I've used all my fragile spoon supply on the following, because I have some important work to try and do in other places, including trying to get the vocals on this final song, so I can complete a 6 song EP and get it up on tunecore/Itunes as an special edition EP, to also give as gift to donors. I have to have enough spoons with my compressed brain to be upright singing to do it. I got some vocals that were fairly decent-ish, but not done.My spoons have been so precious and few lately, and if we don't find out what's specifically making me ill (and feels like it's killing me, full stop) it's bound to get worse. There's more than one thing. One of these things may be a simple but currently debilitating issue (gallbladder is done for) and the others are more tricky (brainstem compression and biochemical complications like endocrine and immune disease, and/or mitochondrial disease) I long to use my spoons to do the things I love.
If I had my way I'd have a cleaner every day, and I think in my position it doesn't sound princessy to say that. I'm to some degree terminal. I want more time. I want to play like I never have throughout my life. So much trauma and crap for being me. I don't want to fight anymore, just to play. Just to steal joy.
We did have cleaning come in once a week, which was so helpful, but the agencies switched and for a month they effed up badly, on communications/intake and no one came in, so things got challenging and deep cleaning behind - which made it really hard for my immune system to recover just getting out of the hospital after that vicious flare. Horrible timing for them to do that. So I've been forcing myself to try and do some of it, and end up easily incapacitated and ill, because these days I am pretty freaking crippled.
Another slap in the face is that I just got a call from the red cross saying they won't send me the part time wheelchair because when the OT came over she thought I didn't need it, she thinks "you can walk." I had asked the physio to send me a wheelchair so I could go out and see the lights if I was feeling too unwell. Nope. Once again too much to ask. That was really nasty of the ignorant who clearly understands nothing about collagen weakness and dysautonomia. I cannot buy one right now. I need to hang on to whatever I can to try and get to the USA. I like walking as much as I can, I do, but some days I can't (more than a block) and I want to go out, and feel the air on my face (bundled up of course.)
My being upright exerting is like a small hourglass with sand that takes a couple hours at the very most to run through. If I go past that I will suffer, and suffer greatly. Today I pushed it all morning when already feeling pretty unwell from going out yesterday, plus my gallbladders' been flaring bad, so I'm now in bed and sick as a dog, and shaking. With the thing we think is gallbladder, I'm on thin ice with that, which is such a bad combo with my compressed brainstem and overall issues. Bad add on, insult on injury big time. They haven't been taking seriously enough how much more fragile I am if I run into a complication like this.
The gastro in the hospital was careless and neglectful with me, and the second opinion referral got rejected - but things have persisted, and now my GP is behind me, because it's the same thing, still going on. My liver enzymes test ok, but the dysfunction and pain is pretty bad (in the liver area, but especially in the gallbladder part as it seems, let's hope) Pain somewhat constant, sharp, dull and pressure, it's classically GB in upper right abdo through the shoulder, feels enlarged, feels hot sometimes (infection concern) appetite is low (I'm put off meats which is so unlike me), nausea is somewhat constant too, my ability to digest fats relies on a slew of digestive enzymes, bitters, lemon water, dicotel pills, and other stuff too TMI, very concerning. All the crutches worked at first but no matter what I do, it's gradually getting worse/persisting.
My GP was hoping this might recover itself if I persist with the careful specific diet and all that stuff, but I'm not sure if it's getting worse or if it's a detox reaction ie. my GB/hepatic system is trying to eject stones and sediment, or whether it can, or whether it's just dead. So she found a way to order me a scope (all gastric, hepatic) without going through a gastroenterologist first. This might take awhile, and she also told me to go back to the ER should i get some kind of severe attack, and emphasize where/how the pain is, and fingers crossed they would actually deal with it. She's done the best she can do.
I have to pray to my guardian angels about things right now. This is the toughest Christmas yet for me. My heart is so heavy I don't have words. I'm often weepy. I have so much remorse for things I wish I had done and not done. I want another chance at my life. I'm desperate for answers and finances stand in my way. If they were not in my way, I'd be getting a private abdo MRI and gastro consult right now, and book to go meet Dr Rosner (neurosurgeon) in NC asap. Among other things. If only a miracle would happen. So, Christmas - I am not feeling it - I just care about my boys being happy, and having my life, but really what I want is my life back. It seems like an unrealistic wish. I hope it'll just be over soon and I can mentally regroup, and find my sense hope - somewhere in there again.

-R.G.

Update; three weeks later it was discovered I'm suffering with Pancreatic Exocrine Insufficiency and need to be on prescription pancreatic enzymes for life. After being emotionally assaulted on christmas eve at the hospital, and more I don't want to elaborate on, I was the one who asked for the enzymes. I figured it out after being abused and left in a deadly dangerous situation unable to absorb fats which, with my EDS, could have caused a heart attack. I started gaining weight and being able to breathe, within a few days. I'm now on them for life.

Monday, December 5, 2016

Double divergent under the bus

I am not "manipulative." I am a slightly but ambiguously awkward autistic woman on the "actually *not* mildest" end of the autistic spectrum. I am a, for *lack of a better term* (pls and thx, can't walk on eggshells) "high functioning autistic" woman who *seems* like merely an aspergian, verbally, but is higher up on the spectrum than people even realize..Why do you think I qualify for gov't autism services after extensive psychometric testing? 

Because I'm not a vulnernable little "special" person .. actually - yes I am .. and I'm vulnerable. and I'm getting picked on and it's so bad I could end up losing my life because I don't have a fighting chance, as a rare-atypical-type-Chiari + EDS (a poorly understood but serious illness) sufferer, with autism, in poverty .. what kind of fighting chance do I have? I'm too tired to pretend I'm any smarter than I am. Sometimes I really just don't get things. 

I have precocities but overall I am cannon fodder at the hands of a beaurocracy such as this. I appreciate people who care and who really get me thank god for you and I love you for it, and I'm about to think some of you guys need to write some letters for me or something.. Some people have been SO MEAN and I am tired of it. 

I'm not a witch, I'm a dork trying to "play a game" (it's called "expected social rules that get your needs met" not "be super narcissistic and screw with people" yeah right! As if I would be IN this situation if I KNEW how to play that game) ..and to boot, some of those in the autistic community who are actually milder and all can-have-jobs-and-get-degrees-and-fix-computers-Spocky been uber harshly critical of me via their own lacking-theory-of-mind projections. 

Four words to both mild/phenotypical types and NTs: CUT ME SOME SLACK. I am a highly sensitive HFA woman in a very tough and terrifying situation having to do too much of her own self-advocating while doing it ambiguously awkwardly and thus often getting unfairly judged and sh*tkicked. 

Some people really need to stop being part of the pile-on and realize that you're picking on a sick, weakened and injured mouse as lions, and just look through their fingers and see the actuality of the situation. Or, will the way that I am and can't help but being ultimately get me killed? ... What am I doing wrong ? I don't know and ultimately, even if you told me, I don't know how to make me not be me.. especially when I'm really too sick to have the energy to even try.. 

I have it double rough. Double divergent. Double divergent; Under the bus.

Sunday, November 27, 2016

Open your eyes - for Zebras

Most of the EDS community is suffering so badly. Very badly. I'm hearing what I initially hoped and prayed is nothing but a bad dream, but it's not a bad dream. It's real. I don't know if I want to say what I'm hearing. People are losing their battles. What I feared most, what I was told by so many "couldn't be.. oh no it couldn't be." No.. it is. It is happening.
The reasons for such suffering are geographical and financial, especially the latter. But - the underlying reason for the former is systemic violence and greed. The "Scroogey" medical systems can't financially sustain us, and so it's like they passively want us to croak, because they don't know what else to do. No. No. No. Find a better solution, ASAP.
The Cystic Fibrosis community had the same problem 30-15 years ago, and it has stabilized and gotten better to a large extent, thanks to the grassroots efforts of loving family and friends, and some brave ones sick themselves advocating from bed. Before then, the financial situation of the CFers family was the thing that primarily dictated their lifespan and quality of life while here. It's similar with EDS in this way.
It's the hardest thing of all, to be the injured advocating against injuries. I have to try and save my own life but not without making it loud and clear that I am not the only one who needs saving. It's heart wrenching, the amount of suffering of innocent people, and their families, who happen to be hit with this horrible disease.
What I'm hearing gives me goosebumps, makes me quiver, and gnaws at my heart. The USA isn't a magical place to get help obviously. It's a place where most EDSers are suffering tremendously, just as they are all over the world, other than a few lucky ones who have been able to get to the doctors, who have been able to pay or whatever. This isn't to put them down. Anger and resentment helps nothing.
But it should not be this way. Overall, we are drowning..drowning in the consequences of severe inequality and greed. The more severely affected are losing their lives, and even those who won't lose their lives are suffering in several ways, especially if autistic/neurodivergent too (many zebras are autistic/neurodivergent and vice versa.) We need the world to stop denying the truth, and take a stand for us.
However, most of them don't, and instead, they catch the "Be abusive and/or neglectful to zebras" mind-virus that seems to be as contagious as the common winter cold, as well as the "blatantly deny Ehlers-danlos exists and is a serious illness" bug that runs as rampant as a stomach flu passed around a holiday banquet....
Come on people, think for yourselves!
Even our own families sometimes abandon us.. pathologize us when we're gravely ill right in front of them, by walking away so they don't have to see the truth, and then proceeding to make "up their own version" of what the truth must be. Which of course is just insulting bunk. This is called cognitive dissonance, folks.
.. Yeah many of them buy into the denial..and break our hearts..betray us .. just what a sick and scared and suffering person needs, right? They are part of the problem.
Those who stand by us, help us, stand up for us or with us; they are preciously invaluable, and thank you so very much to those people who see and think for themselves, and with their hearts, for their zebra friends/family members. Bless you. Truly.
But all people. Family, friends, bystanders even. All people: Get out of denial and stand with the zebras. We need your help. Don't turn your back. Have the courage to turn around, and open your eyes.

Rosie G. 
www.thebionicbutterfly.com 

Saturday, November 19, 2016

Help to quell the raging scars

My intuition tells me that it's not just EDS. But it never is for people, I don't think. It's mild to moderate EDS with co-morbids that have over time accumulated bad damage; loads of osteoarthritic, tissue and immune damage, especially of my spinal column (including thoracic - thoracic is a big issue, maybe tethered chord) and some kind of autoimmune/infection stuff. I hope it's not mito. Maybe even if it is, it's reactive to dysfunctional scar tissue.
Maybe it's just very bad wear and tear taking a heavy toll on my nervous and immune system/s. I fight it as best as I can, but it's a hard uphill battle and there are some pieces to this that require medical intervention and those are the missing pieces weighing me down badly. I just feel that whatever is going on is diagnosable and treatable but it's been missed for WAY too long. I keep going back to lupus over and over, but lupus never shows up. That's not where the sparkplug is coming from though, I guess. It's more a functional short circuiting colliding from nervous system damage colliding with immune compromise and with my body's computers sometimes-counter-helpful defense mechanisms. I don't know what I'm saying I'm seeing in pictures as per usual -
This I think is the exact predicament of the average EDSer... it's the co-morbids running alongside, and then colliding right into the EDS that make us so sick. Some of us more so than others. I cannot deny that my situation *must* relate to all the trauma I went through. In my case, I had such immense multi trauma exposures. I don't know if it would have been this bad. I may have to say too, that child bearing placed a lot of stress on my body, as much as I love my boys to the end of the world.
But it's those co-morbids which badly need addressing and treatment, and if they get this somewhere, somehow - some quality of life can be restored. The problem is that most doctors don't understand how EDS and it's co-morbids react and interact together. They don't even understand *what* the co-morbids are or why. This is the fundamental flaw that causes such extreme neglect of the systemic nature of this thing, and how to best address it, to rehabilitatively soothe, calm, treat, mend and then redirect this angry battered body which was so soft and delicate to start, and yet took far too much wind, rain, snow and ice out there in the trenches.
This is my predicament. I need to get to the people who can help me mend it (using a multi-disciplinary approach) enough to lessen the scars, to turn back the clock (realistically at this point about halfway) before the layers of infected scar tissue consume me and cause me a slow and painful trip down a spiral, probably with the end result being a grave. I believe it can be turned around. It's partly up to me yes, but I cannot do this just on my own anymore. I am exhausted but also, logistically, I cannot produce all the resources myself. I can produce some, and I have, and I can keep doing it - but I need to be met halfway. I need help to quell the raging scars

Rosie G.

thebionicbutterfly.com 

Wednesday, November 2, 2016

Journal: Not done.

There is nothing harder than being a highly sensitive empathic autistic woman with PTSD and sensory processing disorder, and (currently) severe complex rare illness. I don't know what the Cosmos want from me but this test is massive. It is unreal. I hope I pass this test, and change into something else that isn't afraid and hurting, and find peace and freedom, and reach the point where I can say "Ok, I'm finished, I can go now." I have a feeling at this point it that I will never be an old lady.
I could be wrong and surprise myself, but I don't think it's happening. That doesn't matter to me as much as giving me like, 10, 20, maybe 30 more years. Somehow. I have so many regrets, stupid ways I went about things as a Mezz Joan of Arc riding out there, reckless things, trying to over-control it and "frankenstein" as my wiser, much older than me autistic peer support worker told me before (accidentally hurt myself trying to "strategize.")
I didn't know I had EDS, and when I first did I was not grasping all of what that meant, as well as whatever other systemic pathology which feels yet to be discovered, is underlying. That last part really scares me. There is something/s being missed somehow, we need to find it. My hospital internist admitted it. He thinks somethings' still being missed, something he thought "might be something unusual but treatable" but as a self described generalist going by the usual book of internal medicine, he's at the end of his rope, although he did agree to refer me to Toronto specialists. Also, I hope these two upcoming specialists, tomorrow and next week, might have some answers. I have reasonable faith in this young clinical immunology/internal specialist especially.
But I'm feeling emotional. Which might not be bad because I do have a big problem with holding back tears because of being criticized re: the way that I cry and express my feelings (as a child like autistic empath.) Then, sometimes people accuse me of being cold, calculating and even narcissistic, and it pisses me off because they really have no idea how sensitive, loving and heartfelt I really am. I'm just try to be tough. I have to almost block my feelings to function and to not, at times, have a potential mental breakdown .but I'm letting it flow today. Just boxes of tissues. F*ck I don't care ...
I just have always had this strong sense that I'm here to do something, through putting myself out there somehow, the Cosmos made me the way that I am to be a messenger. I am not omniscient, I just feel like a steward of that work and that is sacred..people misunderstand my passion re: that. This also pisses me off, if I let it I guess.
My deepest fear is what Temple Grandin said "I don't want my thoughts to die with me, I want to have really done something" I get really upset when I feel like whatever that something is, ball park in the form of music, art, design and articulation, is threatened. and also, when I experience illness so bad I fear that I will not see my family and people I love again, or get do things (with them) that you don't realize are so precious until you are limited.
I am just not done. I don't care what kind of tubes, or metal pins, or robot limbs, snip outs, medications (that actually work), picc lines, or whatever you medical science people, if you would only truly listen and accept that I'm a zebra and learn, will have to give me. I.am.not.done. I do not want to be incomplete. I have things yet to do. I have time yet to spend. I'm not done, and I'm sorry. I'm sorry I wasn't wiser, sooner. Smart and wise are different things. I do have this wise voice, and sometimes I listen to it. When I do it's usually the thing that helps.

#chronicillness #ehlersdanlos #dysautonomia #findacure #life #love #family #bucketlist

Rosie G.

girloutside.org

Sunday, October 23, 2016

Extortion of trivial things is painful

I made a video recently after the whole story went down about Kim and Kanye's 4 million dollar ring being stolen, and I have a few more pertinent things to say about this subject. I can articulate a little better in type. That story being put out there in the public reveals the kinds of gluttonous expenditures these celebrities make...and so I ask; how the hell could anyone squander 4 million bucks on a ring, and in fact many things that they unnecessarily squander a lot of money on. It's stupid. It's pointless, and it's a horrible waste of money. But it's acceptable by the societal standards. Of course.

In commercial markets, tiers of value are created, and abided by. The gross discrepancies in terms of item pricing show that it is just a man made concept born out of exaggeration. Items might cost a little more if the materials used to make them are of good quality, hand made/boutique, organic natural source, and therefore have a higher value, but the prices of some of these items are unnecessarily high compared to their true value. This is unnerving.

I have no respect for anyone who squanders 4 million bucks on a ring, or 777.00 on a hamburger (I don't care how good it is) or 400.00 bucks on underwear. It's hard to find words for this, but it's infuriating to see someone with lots of disposable income just drop it on something trivial but extortion-priced, like the 777.00 burger, or a 300.00 pair of socks, or a 2000.00 bottle of wine, a 1 million dollar dress... all seemingly for the sake of doing so.

I don't understand why people need to spend this kind of money on items when they can still get good quality items for a much lesser price. Do they just want to rub in our faces that they are better than us? Or, what's the reason. Why has society created this pressure for rich people to buy overly expensive things, so that the markets can create a market exclusively for rich people, with items all extortive-ly priced. This is greed born and unnecessary, and pulls money away from other areas where it's badly needed.

Companies that price items like this take advantage of the rich, and the rich buy into it simply for the take of asserting their social status. It feels passive aggressively offensive when you compare it to all those people struggling out there. A kid gets a blouse at a low cost department store for 25 bucks, or a rich, celebrity kid gets a designer blouse for what, 200 bucks? There's no need.

777.00 is a month of groceries for a low income family, or a burger for a rich person. This is a totally passive aggressive caste system, and sorry to sound communist - but why is it legal? Why is it allowed. 4 million bucks on a single ring is insanity, just insanity, I think. So is a near 800 dollar burger. What the ____ ...

4 million bucks could feed a city of starving people. It could build schools and water pumps. It could help people here, in the US and Canada, get life saving quality medical care that they would otherwise not have access to. It's disgusting that people who have that kind of money would dispose of it there, instead of buying a nice 200-400 dollar ring, and investing the rest in actually worthy causes.

I'll make this personal for a minute too. I'm living a difficult life right now. I'm suffering with a rare/complex genetic health condition that is severely harming my quality of life and threatens my life itself. I'm fighting for my life here, because I can't afford the private healthcare available in the eastern united states, which would repair my system enough, and get me a new spine. I can't afford to privately order medical tests and am therefore at the mercy of a socialized system which limits testing and tends not to order the intricate, deeper layer tests. I feel so helpless, because I know so much could be done if I had the money. So yeah, it makes me rather angry when I see something like these celebrities buy a 400,00 dollar dress. That kind of money could give someone like me their life back.

Wow. The things people take for granted and base value in. I don't understand it anymore than I suppose they understand what it's like to really suffer.

Rosie G.

www.girloutside.org

Thursday, October 6, 2016

I think it's safe to say "she" is bona fide ..

*Disclaimer A*

I'm not surprised by this article, at all (*article that I cannot share here, to keep anonymity. It's about the husband of this unnamed celebrity and the psychological mess state he is in, because of her*)

I don't say this at a whim about women who are "different" because I know how it feels to be an accused due to being misunderstood strong-willed aspergirl...There really is a difference between NPDers and strong willed, more socially motivated "actor aspie" types, and it's almost like two polar opposites of a spectrum. Society is really poor at telling, and it looks "opposite same" because stuff like that often does, but there are key differences, most of them coming from internal motivations, but also external presentations. The innocent is more often accused whereas the guilty gets away with it. Society overall has it backwards, and I think it's cause overall most people seem programmed to obey and hail sinister forces as opposed to ones that can really lead positive change. Like favouring and hailing Henry the 8th over QE the 1st.
Anyways, back to Ms. J - in the case of her, and a few others I can think of, it's safe to say she's not just a misunderstood aspie, but a bone fide narcie. (I do love the movie M____ though, too bad it's her. *sighs*) In fact, I've been observing her long time and I have to conclude that I think she's a f***** psycho, and I don't know why everyone puts her on a pedestal/doesn't see through her. (Again, it's kinda backwards, the real narcies are seemingly put on pedestals, whereas the slightly awkward and trying hard, passionate-personality "actor aspie" types get accused of NPD and gaslit.)
It's like Joan Crawford ie. "mommie dearest" .. those kids, some of who she made herself look all "charitable" adopting, will likely be writing their own version of "mommie dearest" when they're grown. Poor things. They're rich but they're also prisoners. I know it all too well, having experienced this myself. This is why it's so insulting when ignorant ppl who don't know me have accused me of being this type, just because that "type" was my social role model and therefore some of my superficial social presentation sort of mimicked that (but in a bad, obviously awkward, mimicking way which you would think most people would recognize as awkwardness and not knowing how else to "act/say it" if they were at all astute...plus I don't do it much anymore I'm now just direct, take me or leave me.)
Yes, there's nothing more insulting that being a victim of a narcy parent, then being accused of being (and gaslit) that person who you strive to *never* be. However, back to Ms. J__ I think she's bona fide. I don't say that lightly.

-Rosie G.

www.girloutside.org 

Harmful "help" - remedial training is needed.

*Disclaimer A*


For a female aspie friend who just came out to a "helping" organization ie. trying to get support for a sexual assault, and instead she was misconstrued somehow, thus discriminated against, and further hurt. (I know all too well what this is like) I'm pissed off:

"Help" places often discriminate against and mistreat aspies, especially aspie women (because of their denial problems re: aspergers' presence in women, and by the way I'm going to say aspergers though I know it's not in the DSM anymore because I feel it describes things better, because we're referring to insidious autism with verbosity - the presence of such a thing is often denied in women especially - but ironically and hypocritically, they discriminate against the very thing they're denying!)

These "helping" programs, places and figures tend to do the very opposite of help, they further harm and hurt. Sometimes I call it "unhelpful help" and sometimes it's flat out "harmful help." It's disgusting, and going to them about a serious matter only to get wing-slashed (alluding to Malificent) is a prime and severe example of autistic person abuse.
These outfits, and all social systems for that matter, badly need remedial training ie. how to handle a verbal autistic adult who seems "normal" to them but will have differences and disabilities with expression and communication, and therefore will present with their dilemmas in a divergent manner.
They need to understand that divergent presentation and affect in reaction to a serious problem does NOT equal illegitimacy of the problem, and in fact, the autistic adult is often *more* vulnerable if anything.
Therefore, undermining the autistic person and their problem parallels structural violence via neglect and/or abuse. Whether they intend for it or not - and they need to see that this is the result, and how that must feel to an autistic person. It is *so* traumatizing. Being traumatized on top of being traumatized, it's horrendous. It's like flicking acid on a wound. Scar tissue gets really deep and damaging that way you know.
They need an educational programme and all need to mandatorily go through with it. Remedial training. It'll be a great day when that happens. #autistic #aspergers #women #neurodivergent #disability #sexualassault #ethics #humanrights #help #selfhelp #advocacy 

Rosie G.

www.girloutside.org

Sunday, October 2, 2016

Solid reflections amid healing burns scars

*Disclaimer A*

Oct. 2. 2017

I'm just thinking .. I really don't know how these people managed to stick their heads up there butts so far as to deny my EDS like they did, and far enough that for awhile they succeeded in gaslighting me..and I was starting to feel like I must be crazy. I think my EDS is actually pretty obvious. I have the look of an EDSer and I always have to some extent, but especially in the last 7-8 yrs. My skin is clearly very soft like that, I have the deep set eyes and even though I'm very short (5"1") I look taller because I have long somewhat lanky limbs, my arms go down longer than average like a marfan. I have the microgathnic jaw and crowded teeth/high narrow palate, the elfin appearance.
Like holy smokes..I realize now that these people were choosing to deny me. I know why. EDS care is a worldwide crisis. I get that the notion of establishing best-practice EDS care, in a socialized healthcare system especially, could be really financially taxing. That's not to defend "them", just saying what is. They need to find solutions, regardless. But they're acting like "wasps in september", irate and defensive as their old ways are dying out and not working anymore, and new ways (and new budgets!) to solve these issues must be found. They're in a "No! We don't wanna!" thing here, and so they have been for awhile. The pressure is building though, and this stiff and creaky wheel will have to start turning a bit more fluidly soon. They cannot continue to do this to people. It only works for so long ...
With me, I think they knew all along, that I'm a zebra. They were just trying to keep it from me at all costs. That's why they inflicted that awful psychiatrist consult and horrific outcome onto me. I was tricked into that event, big time, and in that room, there was no normal discussion, only an interrogation that felt set up and preconceived in every way.
The first time at genetics they refused to do a blood test for Elliot and I, for the classical EDS gene. God forbid, it might be positive! I was actually called in to genetic counselling when pregs with Elliot because he had a thicker than average nuchal fold, which is a genetic marker of an anomaly, usually trisomy 21 (downs' syndrome) so we did an amnio and he was negative for Downs'..but I think that marker was to do with EDS.
Some of what they wrote in files alludes to that they always did know, like "do chest xray - in because suspected conn. tissue , but assure patient she's fine otherwise" Jerks eh? But seriously, in the long run, that game doesn't work with a genetic progressive illness. So silly...Silly lizard/toad brains ...they should not be allowed to get away with the kinds of systemic abuse that they inflict on zebras..but they do this to a lot of people, for varying reasons. Zebras and/or autistics do get the brunt for sure.
Being an autistic woman with EDS who tried to staunchly self-advocate, I got a mean double whammy of that! So funny that my head/neck are unstable.. are we sure there wasn't a Salem-esque rope put around it, lol? But I am healing now, and regaining my confidence back. After years of gaslighting, I'm finally truly healing inside, in spite of being kinda battered physically at this point and in the full throes of systemic EDS - some of which was inevitable, but some of which I don't think would have been as bad if stress had not been like fuel on a pre existing fire.
Anyways, I can't think about what could have been, I have to focus on the now. It's too bad I was so gaslit and beaten down that I couldn't get on with my music then, but I'm doing it now, and I believe that even if it seems unfavourable, things happen for a reason. My music is stronger and more lyrically poignant because of what I went through. Rise Above is about that; being bullied and gaslit, being broken, and coming back together to stand up to it and hold your own, be true to your true story.
It's bionic time for sure! Ie. Now that finally "believe myself" enough to realize that I do need all this bracing, especially along spinal column, I'm starting to see that it's very very clear I have EDS, and I'm able to take control of my symptoms a bit, know where their coming from, and "get out there" more.
Things will change eventually, and it's starting to, you know when push comes to shove. We just need to keep chipping away at it.

Rosie G.

www.girloutside.org

Sunday, September 18, 2016

Not such a pity

*Disclaimer A*

I just openly shared in more detail about my debilitating and privately wrenching struggle with POTS/dysautonomia, on my health advocacy page and on my wall. I don't regret it. I would apologize and say "sorry if I scared you", but nah. Be lucky you don't have to live with it, 'cause truly if you don't, I am genuinely happy for you. Lol. 

So people who see it will either take interest in order to understand, or avoid it and not, either because it's too much for them just 'cause, or because they're too stressed with their own stressors to handle empathizing at this time... and that may be perfectly understandable. 

I am not interested in pity. I'm interested in #awareness and I'm #zebrastrong - I'm fighting to be here tomorrow, and tomorrow, and tomorrow...

Sure underneath that armour is a scared little girl with a teddy bear, scared of the dark room she's faced with, placed in, stuck in, trying to get out of, defying the odds even within it - but she's not a daft one and knows how to build armour and read the book of Amun-ra, all she can do is try, so moving on now. (It's ok, I don't have DID... I just like to speak in the third person about my "inner child", hehe.) So much to do. It's friday. My friday nite party is work, and I'm going to have a party with it. Yay. 

May the "forks" be with me.

Rosie G

www.girloutside.org 

Friday, September 16, 2016

Blue flower givers don't matter



(you can find Twisted Angels' page on FB)

Twisted angel is on the money. This rings true for many of us I think. I find this happens a lot to strong- spirited people .. It sort of reminds me of the movie Zootopia.. You know when the prey animals were giving the predator ones blue flowers, so that they'd go crazy and look bad, so that they could discriminate against them. I try my best to stay away from those people these days (not always easy when this might involve family members.) I really have no energy to be triggered, but sometimes, we may experience this behaviour inevitably.
I still sometimes hear about certain people talking about me negatively, referring to less-than-ideal ways in which I behaved when I was hurting, messed up and didn't know what was going on for me, and trying to use it against me to hurt me today. Who has experienced that? You're not alone.
Such things do happen when we choose to be in recovery mode, whether it be from mental/spiritual affliction, addiction/s, or both etc.. but we may be still inevitably attached to people who continue to resent and want to hurt us (often via blood family, or having kids with exes, etc..) Like the meme says, these are people who are sick themselves, not wanting to take *any* responsibility for *their* part in the hurt that they may have caused for you.
The medical system originally tried to pull this one on me also (to victim-blame me) when I proved them wrong (and, they may still try at the tribunal hearing re: my case, when it comes up.) You know, given my position now, it's ultimately very cruel of them, but that's on them - and I know that. God knows that. We have to be prepared to mentally condition ourselves to rise above sh*t like this, should it come up. Perhaps stand up initially if absolutely necessary, but don't stay and fight, walk away. It's on them. They know it deep down.
In retrospect too, I *do* have some actual, true, good people in my life... and I'm sure other "strong spirited" folks who may relate with this meme *also* do have true friends who they can count on to not judge them or mess with them.
I myself have to acknowledge this in order to balance this meme. I am so very grateful for *true* friends who would never intentionally toy with me and/or rile me up, and then when I'm riled up go and blame it on me citing "see, she is psycho, right?" ie. being passive aggressively narcy and abusive... because they're good hearted, virtue-conscious, astute people who know and care about important, humanistic concepts and see my true heart, albeit beneath the shield of armour, for what it is.
These are friends who know that if you may, at times, be pushed to bark, it's not a bite, but an expression of pain - So they look past that and love you for you for you, unconditionally, and are there for you even still...
This isn't to create a licence for us to do limitless and/or injurious ranting and raving, I'm just saying ..those who love you unconditionally, even when you may rant and rave, at times, in moderation and/or for understandable reasons.

Rosie G.

www.girloutside.org

Wednesday, September 14, 2016

Stealing Joy

It's hard when it feels like you're body has taken you hostage. You can never go anywhere or do anything without often experiencing some kind of unpleasant, and occasionally downright rotten or scary feelings. It makes you feel like a total prisoner if you look at it from a downtrodden point of you - a situationally depressed point of view.

But that's easy to do, and hard not to do. There is good, logical reason to resent being life limited. To be devastated by this. It's natural for many, and for some personality types more than others, to want the ability to be spontaneous, and the ability to do what's necessary whenever it comes up, without any major limitations. The latter can be a huge source of anxiety and depression, and a feeling of helplessness, when it's not possible, and this is one of the first things one with developed chronic illness faces. In time, you learn to manage this better (though it's never perfect and that's ok.) You learn limits, you even learn that sometimes you can ask for help, and/or to be accommodated, without feeling guilty or being ashamed. This is even if responses are not in your favour - then, it's "move on and next" - because if they're not in your favour, that's on the other, not you.

Chronic illness isn't predictable, and that's no ones' fault, no matter how much others who don't understand try to make it yours, or someones', or somethings' fault. One can try to manage it, like if they know they have an important event they make an extra effort to rest up so they will have "spoons" for it (spoons are energy points as per The Spoon Theory.) It's relatively likely that if a person makes an effort to take extra care before an important event, they'll be able to feel at least "ok" for it - but this is not always so. There's always a significant possibility of having to cancel the event, or go but not be able to enjoy it or take it in whatsoever, because of feeling awful; whether it be because of high pain levels, a lot of fatigue, nausea, or even something more unnerving like a palpitating heart or feeling faint.

These things can devastate, anger and depress us if we let them, for sure. Sometimes letting out a cry is what's needed, but staying there isn't good. This is when the concept of "stealing joy" can come in to help. Stealing joy helps me overall, with the reactive depression I undeniably battle due to living with this illness. It's also helped me appreciate things I used to not appreciate as much before, and it's forced me to let go of negative feelings that would come up, through guilt due to past gaslighting and unfair ignorance-born treatment, when I would do and say things in a certain way, present things in a certain way, or indulge in things that I just liked and made me feel good. When I would just "be me." For example, being outspokenly witty, and dressing up to the nines (and eccentrically!) when I feel like it, dressing sexy even. Watching crass comedy. Doing my music full throttle. Dancing like no ones' watching. Even satirically expressing anger, through dark, satirical humour, or just being silly and slapstick. Whatever it may be that one would worry, in terms of "someone judging and criticizing them."

Sadly I let bullying and/or pressure to just be a "good, normal girl" cause me to feel guilty about doing certain things, about being me. That would actually backfire when I would explode or melt down, or self medicate in ways bad for my body, as a result of too much internalization. Now I'm trying to be like (sorry to be cliche) Elsa from Frozen, ready and willing to "let it go" without shame. I tell myself I have no extra "spoons" (physical) or "forks" mental energy to care and thus stress over these things. As long as I'm not really hurting anyone, I should be able to "let it go" as I please, and turn it into something that is somehow a good outlet for me. If feelings come up and they're let out, they're then less likely to come out in worse, more toxic ways later or chronically.

Pure hedonism isn't good, but I don't think it's a bad thing if it's in moderation and not physically detrimental to the body (eg. harsh, illicit drugs)  - and if it's balanced with other things that are to some degree purposeful, though not always necessarily "super deep."

Back to stealing joy; I'm very life limited at the moment, and so for me being able to be upright, out and exerting is a precious thing in itself. So when I'm having a good, or even so-so day physically, when I'm feeling physically good enough to go do something - I like to take in my surroundings with appreciation. I try to go and do or see something that would seem ordinary to the average person - but I soak it all in. Things like a walk up the street past the park with the garden, a walk up to the cafe to walk in and observe the layout and all the people sitting there enjoying themselves, smell the freshly brewing coffee and even have a small one, being in the car observing nature, scenes and people watching, a trip to the local beach, forrest or mountain to take all that in, taking my kids to the park and watching them play for a bit, window shopping (or, actually shopping) at a thrift store, playing dress up with my clothing collection, doing art (just started that one), dancing to some favourite music, cooking or baking something elaborate (even if I can't eat it - sometimes that's still fun because I do it for my family and watching them enjoy it can be fun too, really, no lie!)

When I was living in a state of post trauma and anxiety, and I wasn't as sick as I am now, I seldom took in these things. I seldom made any effort to steal joy. I wouldn't let myself. I inherently didn't believe I deserved this. It was always survival and problem solving, or approval seeking. Not only did I not know how to steal joy, I didn't even know how to find it. In fact, I still don't inherently, but that's why I make an effort to "steal" it. I say "steal" it because I am kind of defying odds when I do it, but I have decided I'm going to have it anyway, even if "it" (the general circumstance) is threatening to deprive me. In this, it's the only ok thing to "steal" I think!

Stealing joy is deciding that I'm going to be finding the maximum amount of joy in something that I like to do, and indulging in it via taking it in with the fullest amount of sensorial appreciation possible (as long as it's not harmful.) Now that I am the way I am today, this is what keeps me going. Stealing joy from the simpler things in life is a key component of what keeps me alive today, along with doing things that I believe in, that are purposeful to make a difference, and love for my family, friends and the good parts of humanity.

#StealingJoy #chronicillness #chronicpain #lifelimits #nomatterwhat #ehlersdanlossyndrome #peace #love #riseabove 

Friday, September 9, 2016

"Foxy" - a relentless false accusal blown up by mindvirus and media

(On Amanda Knox ie. "Foxy Knoxy")

*Disclaimer A*

Dear "Heretic Heckling Haters" of Amanda Knox,

Stop hating on her and getting off on destroying her, misdirecting blame and rage onto her, and thus trying to gaslight her because she's beautiful and a bit quirky and awkward, emotionally more reserved/slight flat affect/gender balance brained, as well as showing psychological signs of being gaslit. Yet still, she's desperate to prove (at this point even to herself) that she didn't kill that girl like that. 

She may not have been a perfect person but that's what these haters have used as a weapon against her in this complete witchunt frame. They have a sick idea in their heads that they believe to the bone and that's the end of it, but what that idea was born out of was hate and jealousy which took some suspicious evidence and blew it up into a complete and gross but sharply cunning exaggeration which then turned into a deep and pungent frame. 

But if you look past that evilly crafted stained glass lens, just as evilly crafted as a bunch of hate-filled, jealous, highly emotionally pathologizers could feasibly be; It is obvious that she is hurting, internally tortured in fact, and it is obvious that she is innocent through the trauma, nightmare and gaslighting effects that make her not know how to actually act anymore, without it possibly being used against her... she's still innocent, and I can see it and feel it. 

She may have made some mistakes that night but she didn't murder that girl in cold blood, the hoodlum Rudy Guede did, and his DNA is all over the room..and in the body of the victim. In spite, Amanda Knox sat on trial being crucified. Why? Because they hated her so bad they needed her to be the killer. They needed it so much that they forgot about actual justice for the victim.

People need to learn how to tell things apart. Though Jodi Arias seems to be a soc for real, Amanda Knox is not a cold blooded killer. You made her that way because you hate her because she's awkward but looks like a model. Prejudice. That's it. 

Rosie G.

www.girloutside.org 

Dear "Karen" addition - Thank you for your support

*Disclaimer A*

Thank you from my heart, to those who supported me when I opened up about being discriminated against by someone who is not disabled and of a higher income level than me, simply because of how I look and present, telling her son I am not welcome in her house, since I'm apparently some sort of tramp. I didn't take it right to heart or anything, because I'm stronger than that now, I was rising above it and laughing it off via sarcasm..but still, the principal of it is ultimately hurtful.
This is also a person who told her son she didn't like his ex girlfriend because she was unable to afford to get her teeth fixed. How sad and shallow. Bad teeth are also a health hazard and they hurt you know. Don't these "fortunate" people realize that being unable to fix teeth to "look prettier" may not be a choice and have more serious consequences than just "looking ugly"? My goodness. Anyways ..
People like this are quite sickening, but unfortunately, they're everywhere. They're half the globe; on a spectrum between slight to severe, ie; superficial sympathy and pity, to indifference/bystander affects ie. not taking action to help people/humanity for change as in better ethics, more equal opportunities etc., to actual hate and actual opposition of such changes (ie. social equality, objective judgement.)
This kind of able-istic and pro heirarchical behaviour is rampant, and so is social profiling behaviour based on the way people look and their superficial/presenting traits (which may have many reasons behind them.) Between the two, it can seem depressingly evil and monstrous.
I can't lie and say that it doesn't at times deeply depress me and make me feel like society is hopeless, and that people are overall cruel, but I can't, even in the devastation my own scars have caused me, forget that I do know many wonderful people who are compassionate, reasonable minded, objectively judging, and sensibly wise.
There are many kind neurodivergents (some NDs have become, through trauma and anger, very unkind though, unfortunately) and non-neurodivergent but kind, objective, compassionate and wise people that I know, and whom I'm grateful for. Though half are on that "desensitized to hate" specrum, the "other half" at least, are on this "spectrum" of light... and it reminds me that there is still a lot of goodness and wisdom in people out there. Furthermore, it's not uncommon enough that there isn't still hope for humanity.
I wish I could connect more with the people I care about and deeply respect as people, and if I had more forks I'd be one to one connecting with all of them. I try and do my best, and overall you are in my thoughts. I will always be fighting the good fight with you too, as long as I'm here, and I'm fighting to be here longer and/or with better quality so I can do more and connect more.
I know that the only people who I will allow into my energy field from now on, will be those who stand with hope, light, and potential for wisdom. Nothing and no one else matters (other than to call them out when really needed, and while standing far away from them) "They" are responsible for whether they want to come stand with us, or they want to remain in the dark. I believe that some kind of "new renaissance" will happen somehow, eventually, rather than this world destroying itself. Love wins, love melts. Thanks for your Love.

Rosie G.

www.girloutside.org 

When info seems intentionally vague


Copy/paste of the email I just received 

Dear my ehealth registrant:
We are sending this email to notify you that there has been a change made to your my ehealth laboratory report(s) since you originally viewed them.
The report changes may include any of the following:
A new test result or supplementary report
A corrected test result or a adjusted reference range
A new copy doctor or correction of an ordering doctor.
Correction of the date or time of specimen collection
Other typographical or clerical corrections
Please view this new report in my ehealth. If you had previously printed the original report, you should destroy it by shredding and reprint the new report.
My ehealth reminds all subscribers that patients must always consult with their physician about the interpretation of their laboratory results and to seek her/his advice regarding any changes in the management of their health.
Your secure phrase: natural cures do exist and I beleive it.
Your secure phrase from the registration process is included here, so that you can confirm that this email is from my ehealth.
Never act on an email that does not include your secure phrase!
Please do not reply to this email address. If you have any questions or concerns, email us at support@myehealth.ca

My response:

Rosie Guedes <bohemian.miss@gmail.com>
7:24 PM (0 minutes ago)
to support, notify
I'm sorry but, it'd actually be fairer if you could please specify the report which was changed and why. Otherwise, how is one able to just "guess" which report this may be and where/why it was changed. Citing the possibilities in such a manner as you have only takes care of the bare minimum level of my supposed "right to the information" regarding what report was changed, and why, while actually making it nearly impossible to know, out of the many reports there, which one it actually is. Therefore I still do not know what changes are being made, because the design of this system makes it impossible for me to know. Although this may superficially appear to adhere to the "policy" you may have, it still doesn't specify the information for me enough to know where the change actually is. This therefore still withholds information from me via attempts to confuse me. Whether that's inadvertent or intentional, I don't think that's fair. Thank you.

Thursday, September 8, 2016

Dear "Karen"

*Disclaimer A*

Dear "Karen", (real name replaced)

I am suuuuper flattered that you told your son he is not to bring me into your nicely renovated and modern home, especially while you are away, because I live in one of the rougher housing complexes in Victoria and I look like some kinda "pretty junkie" (I have an illness, m'am) so I might try to ho-ishly seduce him (ever heard of men and women just simply being *friends*?) and/or steal something. You don't even know me, and if you had to deal with even a tenth of what I have had to for all of 48 hours, you'd be sobbing with a box of tissues and booking one of your little ***Finaaaaaaancially Secure*** :D:D therapy sessions. 
Typical upper middle class bullies and haters; picking on the disadvantaged and/or disabled because they're programmed to retain profit by annihilating the weak. I grew up in Oak Bay, I know all about it. My dad's a lawyer btw, actually - but you know not a rich one cause he "helped" too many people. Guess that's what happens when, um, you care a lot? Then my mom got sick with Leaukemia and resources dwindled etc etc. 
When I dropped out of high school they begged me not to cause I had a 4.5 GPA. But I couldn't sustain it so I pulled a quit-before-fail; I was so overwhelmed and hurting that I couldn't focus and couldn't deal with sensory. A teen kid shouldn't be worried about the things I was, and you made sure your own kids didn't have to... but how do things I couldn't control when I was an innocent minor make me less of a person and a "loser" today? To boot, your son also told me that you didn't like his ex girlfriend "Katie" because she's had some problems with her teeth and is unable to get them fixed. Wow. Shame on you for being so cold and shallow...
and lady; You don't know me. You may not even have the capacity to know me.

#discrimination #classism #ignorance #elitism #judgemental #zebrastrong #iamafighter #standupforyourself #respectme #dontjudgewhatyoudontunderstand #iamstronger #iamasurvivor

Deceitful Canadiana (Where is Patch Adams when you need him?)


Passive aggressive and deceitful Canadiana at it's best:

There is a public healthcare system in which we're technically still entitled to here, but the problem is a lot of Drs want to make it a private one, and ...they're disgruntled that it's not happening, so they put their backs up and (ahem, sorry to be crude) "go private", in another way, on their patients... and basically treat them like dirt as much as they can get away with (until the person may get so ill that they can't anymore.)

Here's a brief list of examples:

-Delivering information/s in ways intentionally meant to confuse

- Gatekeeping patients to death in many forms ie;

- Using psychiatry to defame them eg. blame their health issues on mental health (and if you fight that they upgrade you from "depression and anxiety" to "major mental illness and/or severe personality disorder")

- Refusing to refer to deeply needed specialist care

- Refusing to order tests even for things like vitamin levels to screen for failure to thrive status

- Refusing to spend time with them enough to try to look at what's going wrong even if it's a serious safety issue

- Refusing to give authority to cover less toxic and causative treating meds (more expensive) and the same goes for more costly but more aptly diagnostic tests

It all costs them and affects their income, so that they can't buy another car or take another vacation and actually have to um, I dunno care about people and put time/effort/work in? Oh and also, apparently "mature" people with "mensa" level IQs still forget themselves and act like it's high school; They put "peer pressure" on the docs who actually do care and want to do more, so that many of those docs, particularly the younger ones trying to earn a rep, are confused and pressured to not care as much.

In addition, the above list is used much more harshly on those who they discriminate against; the lower income and the divergent minded (who often see through the BS and try to advocate for themselves. This often brings punishment.) Basically, on those who are most vulnerable and may lack the resources to fight back (ie. go to the USA and pay privately to get proof the medical care in such and such a way is needed.)

I find that if anyone's going to "go against the grain" and actually be a good doctor, it's usually the older doctors with some seniority but also with minds of their own who are staunchly good, objective minded people, who frankly are not as concerned about what their colleagues may think. But, this takes a strong, courageous character, and in a doc, it's increasingly hard to find in this horribly dishonest system which is mostly running on perpetually cheating patients in order to retain profits. So it's not much different to our southern neighbours in many ways, but it's kind of less honest about it, or maybe just differently deceitful. Apples and oranges.

Note: The former is true *especially* if you are rare and complex (because we cost them more money) but not as true if you have a disease that is considered more textbook typical and not as complex.