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.

Tuesday, September 6, 2016

Smarten up "kids"

*Disclaimer A*
Sometimes I get a spark and trigger, and thus write a rant. This article on some type of protein powder that's supposed to "cure" and do all these "amazing things" did that for me. I shouldn't specify the article but I'd like to share this so here goes:
"Great. Excellent. OMG. Like. You should just take this!! Just spend lotsa money on this, cause it might help you yannow *Gaaw Gaaw* (Seagull noises) :D .. Ok. No: The Wellness industry is also being a wicked Python, just like big pharma has been, and actually they need to stop screwing around like this, luring people, saying "come to papa, barf out all this money for us and it miiiiiiiight make you feel better because we've done this pro-our-product biased research, so how's about you test it out on a blind guess, and hope it helps not hurts you and screws with you further! and we get richer, and you confuse your body or make it reliant on something that superficially treats an aspect of your disease, and we keep profiting, k! " :D ..  (and so really, it's just like how frontline, cheap, crappy under-evolved symptoms-only treating Rx is prescribed, though indeed far less toxic, initially anyway.) 
Yesiree, The Wellness Industry takes advantage of the fact that the medical industry is failing so many people right now, when what they should be doing is partnering and merging with the Wellness industry, doing research with them, and patenting EFFECTIVE Neutraceuticals and less toxic Pharmaceuticals in which successfully treat CAUSATIVE layers, to help adequately stabilize a generation of people genetically and immunologically damaged by Big Corporate lies and deception and Frankensteiny-science. It's a "science" that, for chronic diseases at least, brings quick fixes and then does far more damage then it fixes .. kinda like alcoholism or recreational drug addiction, isn't it? and then you have the after affects. Too many doctors today are like well dressed druglords with a pen in hand ready to write a prescription, because like a druglord, their solution to retaining profit is to KEEP PEOPLE SICK. It is not a solution. 
Don't these companies realize that there could be another way to do successful business, to retain profit, in an ethical manner, in a "fair trade"-ish kind of way? It's one where both the seller and the customer are happy with the result ie. by prescribing effective medications that stabilize a person in a way that their own body can do it's job to heal as much as it can, and at least maintain the rest without going into a cringeworthy downward spiral (one in which ultimately leads to death)? I believe it is TOTALLY possible, that such ACTUAL medical care could be delivered to people, and not just to the elite - but to everyone! 
So here's the fair deal; people could be reliant, sure, but on some things that help them function and thrive, and quell continual destruction from disease-fuelling mechanisms, so that the body can do it's job to heal what damage may have been done in the lead-up to developing their disease. People are so damaged and diseased now that a lifetime of need will be likely for many, probably your majority - and so isn't that good enough? Do you have to only keep people just-alive but all the while poisoning them and thus robbing them of quality of life, of passions, personal dreams, family times, special moments, for a lifetime until their end? Sounds like an unfair deal if you ask me. Reminds me of when Ursula the Sea Witch let Ariel go to shore for three days, albeit without a voice and thus mute, and all the while setting her up to fail anyway. Sorry to stamp my foot like a little girl and say it but: Heeyyy, that's not fair!! 
Personifying the corporations; Pharmy and Welly remind me of a couple bratty and selfish ten year old boys who need need to sit down and watch a video called "What are Human Ethics?" so that they could be reminded that there are ways to do things where you can indeed gain profit but, um, not hurt other people? If "they" would just truce and team up and do some research, we could have a win-win-win kind of situation.. Win = Big Pharma - Wellness - People (customers) .. rather than an increasingly miserable one which is probably going to end up crashing and backfiring if change doesn't happen more swiftly. 
People with chronic disease could (and should) have a chance at a full, and reasonable in quality, lifespan, and it could be thanks to good ol' Pharmy, backed by Welly - don't you want that guys? To quell the increasing dissatisfaction, and frank misery, unto success and thus happy customers who actually get their lives back rather than having their surface scary symptoms stifled all the while being miserably disabled and poisoned by side effects, and thus unable to have a life, including employment?

Fix your mess. Both of you...it's not just Pharmy's fault, k. It's all big industry. So you kids should smarten up now... before your industries crash from too many unhappy, or dead, customers.

Rosie G.



www.girloutside.org 

See us exist

*Disclaimer A*

I just read a fellow zebras' status about the frustration of spelling and pronouncing, let alone explaining EDS. Solidarity. I just dealt with that b.s. on the phone, with a nurse, this morning. In no mood. Hurting like hell, tremoring in fact, exhausted, nauseated, faintly yellow and glazy eyed (oopsss f*** guess it doesn't take much with a mitochondrially insufficient liver!) and somewhat edema ridden, all so I could have like a couple hrs of passion. My passion that this illness, which very few fully understand is essentially killing me (unless I get to a holy grail) is trying very hard to rob me of... and I'm fighting back, but I don't know if I can or will win. We're pushing "a little too late" terrain here, and Cana-duh is not moving fast enough, or with the adequate resources, to help.

I have to do things my own way and it's my only shot, in an Eminems' "Lose Yourself" kind of way, but about health, related to a hopeless circumstance if it stays as it is, in terms of outcome for me. Because I cannot keep up with all my requirements and they're not helping. Many theys. Who wouldn't see me exist. Somehow I will win this battle, even if it has to be a Joan o.a. ...

..But in light of this, yeah, I'm no mood to spell Ehlers-Danlos for you, or even worse, f***ing correct you as you call it "Ellers-Daniels" ... YES. Thank you sir/m'am, but you know, that "Ellers-Daniels" is killing me, k? and so I won't be keeping that nurses' appointment, thanks...Ok therrre doncha know?..

My spoons are really precious.

This is a ride I want to get off. It's not intriguing or positive like the whole "discovering you're autistic" was. It's simply horrifying. To discover you're a different type of divergence: Physical divergence, from the typical human body type, and what to do to help it, to save it, what's precedented in all the current textbooks. These textbooks need to be re written, badly. Research needs to happen, badly.

But in the mean time, you're the mysterious zebra caught in the crossfire, and so if you're very ill they may not be able to find out how and why, and thus treat the how and why, in a timely manner. They don't understand how complex it is, how interconnected it acts - they seem obsessed with treating one area at a time. One thing at a time. This does not work well for zebras; treating one thing at one time when the mis-firing problem, the defect of that thing is determined by the chain reaction of several other body actions which caused it. They barely see that exist...

This is what they call "rare" but all it really is, is "different." Divergent. A body different in it's actions, to what they are used to. So they need to learn, but way too often they put their backs up instead. The medical systems are currently infested with the "NMP" (not my problem) attitudes that are hurting people - killing people, either completely or in terms of life quality, in the numbers.. Zebras in particular. They refuse to see us exist. They sometimes do awful things, like defame us via psychiatry, to devalue our existence and twist what really is, so they don't have to see us as real, and human. 

In terms of me now, since I went out of my way to prove that I'm real (and nearly killed myself getting so much evidence that they couldn't deny me even if they tried) doctors have, as of late, described me as "very rare" presenting and not only a zebra, but the neon rainbow one. Great...

Imagine that. So you are very rare. You are a mystery. You're wasting in front of their eyes but they don't fully understand how and why .. Because you're rare. You're the Zebra. The rainbow one to boot. They're so intimidated by this that it blindsides them from thinking outside the box, to refer you to the few doctors existing who may be able to help...if there are any, but see, they're too who-knows-what-anymore to even try and look. But sometimes they say, oh; You may be able to get help at these 2-3 such and such specialized research hospitals, private pay, in such and such a location. But you're not there, and you're poor. So God help you. Have a nice day/life! 

Discovering my apparently profound physical divergence was a second, major, too-late-coming revelation and it was much more like a nightmare than what discovering my neurological divergence (being on the autistic spectrum) ever was. It made that look like a walk in the park compared...and I want the bad dream to be over. Pinch me. I want to wake up - but the thing is, I can't wake up because I am awake and this is reality.

I wish I had known, before, what I was doing to myself trying to push too hard to perform, and worse things, because I know it was made worse this way. I know the mitochondria, my cells, my equilibrium of body functions, were further injured. It woke things up, to what extent I still don't know because I can't get to the "rare" doctors. The damages aren't showing up in their demented basic and typical tests 'cause it's very "zebra", not at all horsey, damage. It's organ insufficiency in the cellular activity, through "collagen dystrophy" - it's different. "Zebratic cirrhosis everywhere" (cirrhosis means "scarring" by the way)..

So, that sounds excellent, but we don't know what organ to transplant.. see because.. it's kind of ALL of them..and um.. it's kinda in your cells! It's an all 'round extravaganza... That sounds hopeful, doesn't it..

and it all started with being Ehlers-Danlos..and it was made worse because I let people, and systems, gaslight me for being different, for refusing to see me exist as who I really am - and in it I wasn't too kind too myself, for too long. I admit that I was angry at my body for being so very different, and how no one bloody well believed me, it was like I didn't exist.. So I was angry at it, and I'm sorry, but I can't take it back now.

However, I'm not alone and neither are you, fellow zebra (including the most severely affected zebras of all; the 90% undiagnosed zebras, many of whom died impoverished, addicted due to self medicating horrendous musculoskeletal pains, and physically unable to withstand that, hence the early death.)

Things needs to change. Things need to be exposed. I'm tired of spelling Ehlers-Danlos for people. I'm tired of explaining what it is...and we shouldn't have to. Many are affected and suffering though many *need* diagnoses badly, and then from there, we need equal and fair access to treatment just as badly!

So no more "Oooh yeah I just have sooo much hopeys wopeys I'm sooo grateful that I'm getting medically neglected, happy happy hashtags, I'm super spiritual and prayer is great! yay!" inspiration porn overload for me. No. We have to stand up to these medicals! Don't get me wrong, my faith is crucial to me (or I would have given up by now) but I don't want to be a kumbaya-singing buddhist lying here "surrendering" so that I don't "desire" change - because I do desire change, and so I'm going to be a pagan, pegasean warrior, with faith, while I try to reach for my own bucket list dream, while I simultaneously try to expose what needs to be exposed for the world to get it, in the ways that I feel I can do it.



Let's make it happen. Nothing about us without us...and with EDSers...we need "us." It's like people won't just SEE US EXIST...and thus learn about us in ways that are deeply needed, and this feels like abuse in the form of neglect. It has to stop. If I can't prevent the abuse and/or ignorance from wounding me, I have to do it for my children, and others who could possibly be spared. Why do I do this - I want to maybe have a shot at healing, even at least part way, but if I can't, I want to at least see them see us exist. 

Rosie G

www.girloutside.org 

Ok, Come over then.


*Disclaimer A*


At this point, it's hard to handle when I feel people who are not here, and have no idea what my daily battles are like, ignore my message when I try to indicate even the half of how sh*tty things are (and it's not as if I do that all that often, either) because it's "too much" for them and it's probably an exaggeration, right? and/or judging me as some kind of "factitious" faker, dramatic, histrionic, even narcissistic, er whatever.

It's like dude..If you only knew how much I'm fighting to seem normal here.. I'm actually not sharing the half of it. I'm actually *not* elaborating .. because it's very personal stuff, a lot of it... and so what do you want me to do? Show you? Honestly, You don't want to see. So I sugar coat it.

When you're fighting a serious level, worsening/degenerative, but mostly invisible (til a point where you don't actually *want* to be seen because your incapacitated like a 90 yr old and it feels humiliating) kind of illness, and people who only see what you present judge you and try to accuse you of just bullshitting, it's like: Ok, come over then. (Or, ask the people closest to me, like my husband..)

Come to my house and sit there like a fly on the wall for a week. Watch what I go through and what I have to do to function and manage my responsibilities. Enjoy. So come over and see that, and be shocked, possibly disturbed, as well as (hopefully) apologetic.. Want to? No you probably don't. and actually, I'd rather you not. Because I want to retain some dignity. So if you don't wanna see things get ugly like that - then shut yer face. Just take my word for it, instead of being a cynical and ignorant twerp.

Well whatever, judgemental cynics and haters are not going to steal my joy from me .. cause I work hard to steal it for myself. So screw you cynical, jelly, and (based on what I'm actually going through) semi-inadvertently sadistic haters. I'm a warrior, not a histrionic. You wouldn't last 10 mins in my body and situation without crying like a baby. I have earned the right to do what I want within reason, when it's not hurting anyone (and even sometimes helping some, which is often a main interest here)...

When I actually *can* do fun, sassy stuff...When I can...and I think I deserve to do it because I am a human being who lives with severe pain and fatigue, and deserves the right to sometimes get away from it and enjoy herself in whatever ways work to do that. So yeah. These are my bucket list funstuffs. No raining on such a sacred parade, Heart-tards.


Rosie G.


www.girloutside.org

The other "N" word and backwards presumptions

*Disclaimer A*

People have it backwards in so many ways, and as a divergent person, I seem to be caught right in the crossfire of their butt-backwards presumptions and judgements. Ahead is what these ignorant cynics have sometimes said about me and accused me of...and I can no longer be gaslit by this ignorant, cynical and hurtful (unless I don't let it, easier said than done) garbage. Right, didn't I say in that long winded blog about rejecting garbage? I'm trying. So I feel a rant bubbling;

"Some people really need to think for themselves, and, um, look up what the traits of Narcissistic personality disorder actually are, and then see how I do not meet the criteria. If I did, I would not be in this position in life - I would likely be in some old rich dude's hot tub happily sitting upright smiling with a mouthful of horse-ishly overly straight looking porcelain crowns and a jaw/neck fused with NASA grade zirconium…and of course with my boobs floating up to the surface. 

I’d have not fallen into severe debilitating illness, though on my bad days the birdies would come sing to at my window sill beside my laced-conopy bed, as my housecleaner, private physiotherapist and personal massage therapist grace the hallways. I would’ve gotten help and treatment on time for the most part, and I certainly wouldn’t be sharing on social media about the help I oh so unequally received, while so many out there are deeply suffering. It’d be a big flash of synthetically and blindingly pearly whites, beaming “HaawHaawHaaw, not my problem!"

I used my "learned" social skills to (try to) get by and get my basic needs met, not to get extra things I just "wanted" and sh*t - and then maybe go get hitched with an old millionaire so I could like, poison him in his sleep and cash in on his life insurance .. I am so far on the other side of the spectrum from that. I was the kid who wouldn't even steal a five cent candy or kill a spider!

Sept 1 2016

You know, telling the difference between a socially precocious aspie (even if he or she's a strong willed and sometimes outspoken one) and a cunning sociopath shouldn't be that hard, should it? I don't think it's that hard, but actually, I guess poeple don't get it. It seems like too many people have it backwards, and accuse the "actor aspie" types of psychopathy, all the while continuing to give "do and have and be liked whenever you want" licenses to psychopaths. I'm so sick of it. 

You can't just be an honest, direct, passionate person who likes to express through fun fashions not because they’re conceited but because they’re simply creative and passionate, but they also genuinely care about humanity, and purpose, and ethics. So they possibly have an interest in taking some kind of a leading position to make it better, whether they use performing arts, speaking, social media, music, etc.. as vehicles…but then people pathologize, judge and attack. 

Yet the ones who couldn't actually care less, who are in for themselves entirely and use others only as tools to "help themselves", who are actual malignant pathologies and thus need to be recognized for what they are, continue to get away with it all, while being basically catered to and practically worshipped. Society worships them. Endorses their every whim. Look at Taylor Swift for example... and 1000 other examples…



Good work society. Go spit on Elizabeth the first while applauding King Henry for his 9th beheading, all the while beheading the one who is trying to help, and possibly stand up to King Henry .. be ass backwards why don't you...

Actually they did do that, with Lady Jane Grey, a divergent-minded queen who got in trouble for trying to do the right things for people. Yeah it happens all the time. So right on. Good job society. Keep being the fools and believing Count Olaf and his goony minions, and endorsing ammo to hunt the actual demon slayers, rather than support them. What's new hey. 

-Rosie G.

www.girloutside.org 


Mast cell mayhem


*Disclaimer A*


August 30 2016 (originally FB status) : 

Screw you histamine/immune system. The bit of weight (gain) is going faster than it came. There's "heroin chic" and then there's "complex internally ill" chic, I guess .. (blame it on Mary Freebed, she said it first.) Except with the second one, you don't hurt yourself to look like that by choice .. So if I can wear a belly top due to my body not allowing me to eat, might as well f***ing enjoy it (that is if I'm able to stand upright today, and not gonna hark. yeah..) .. 

I do have benadryl, but what sucks is the the more I use it, the more it "smacks the beast on the ass" meaning, I get a rebound affect, the histamine "roars" at me louder later. It makes my POTS worse, inflames my chest and heart (that can get scary), makes my blood sugars swing, makes me sweat and flushed face, mottled hands and feet, burns my stomach and drives my pain level up to 9-10. 

My natural stuff was working, but then I got really stressed with some upsetting family crap, then mom went into kidney failure (she's ok on dialysis now) and another family member brought a viral bug into my home which the boys caught and were sick/coughed all over me for 5 days straight, and now my histamine coursing has gone beyond manageable with naturals (and diet.. seriously.. I cant eat anything without some kind of reaction and feeling like crap, makes me not want to eat..)

.. So now my body's not even letting me take some of the natural things that help me in other ways, and those things are worse w/o their "crutches", and that's triggering the histamine more (autoimmune mechanisms = body attacks injuries/problems further ie. insult on injury) So it's all compounding. 

*Sighs* It feels like pure hell waiting for my Nov 2nd mast cell Immunology/EDS internal medicine appointment (though I'm so grateful I did get in with this woman) and they don't want me to go and start on a reg. antihistamine medication daily, until I'm assessed. It's important because they do need to assess my situation (everyone's different) without things that are masking, and I did have a bad reaction to Claritin, and am now scared of the similar Reactin too. There are some newer and better (and less harmful) mast cell stabilizer meds anyway, like Cromolyn and such. There are also other supplements, like the DOA enzyme most ppl with this problem lack. 

I am near powerless until Nov 2..and I'm trying to learn all I can in the mean time (the Low Histamine Chef lady's helping a little, but my wallets' not.) My body really doesn't like the Claritin and Reactin class antihistamines, so I'm scared of them. Benadryl is better tolerated, but it was some serious cons. 

I had a really scary attack last night after too many eggs at once with dinner (I was hungry dammit) and I did then have to pop a full dose of benadryl. So I'm still on thin ice today. Good God. At this rate, I don't know what I'll be like by the time bday in 2 weeks. Whatever I'm broke anyway. It'll just be a reminder that I am definitely *not* in my 20's anymore lol .. "Happy freaking bday you can't eat anything - but make sure u take lotsa benadryl, Rose!" I am#zebrastrong and I am a fighter not a victim. But Prayers are more than welcome.