Saturday, August 19, 2017

Interim Update (final blog on brazen musings)

(written august 2nd 2017, published august 19th)

Well.. I said I would be back at the end of the month, but with the way things are going (which are very well, by the way) I will have to take another few weeks at least. I'll leave this post on my facebook wall for a day or two, and then I will have to go back to deactivation I think :( .. Some people think I am back as they have noticed that I have been having to reactivate here and there, on this fb account, in order to work on my music page. I am sorry to mislead, but I'm not really "back" yet. I'm not quite ready to be back .. though i do miss my friends here :( and I hope everyone's having a nice summer! :)

I've been very focussed on pursuing music album production until it's complete. It takes a lot of forks and spoons, and my home life/illness management requires a lot of that too. Add autism to boot. My energy is limited and I need to expense it in the most crucial places at the moment :/ Along with this, I'm just really needing this break, to collect myself and feel/see where I'm at. I'm turning a new leaf and starting a new chapter in my life.

I survived a traumatic near death situation last year, which was also abusive and neglectful for the most part, other than the saving grace of a couple doctors who were willing to somewhat listen, with me having to do the research to find out what was wrong with me, on time. Those doctors acted as practical turnkeys to attain what was needed which helped stabilize me (IV saline, prescriptions), and I worked hard on many fronts, meds, herbs, diet, mitochondrial supplements, gentle physio etc.. I still work hard to manage it all. I still have to live with some degree of the scary unknown and lack of resources to help, like most zebras at this time. It's not fun but I have to find peace with it as is and move forward.

In the end of that nightmare last year, before the crucial interventions (thanks to my desperate insistence) took effect, I was experiencing strong sensations that I could have a cardiac arrest or stroke. I was extremely weak and frail, it felt like my body was going to cave somehow. I felt a horrible sense of impending doom that I know I was *correct* about, had things continued down the path they were on. In spite of that, I was met with traumatic abuse on the part of many medical personnel. We're looking into a meeting to rectify that, now that things are even more proven and confirmed. It was not ok. But I survived, and I am grateful to my creator and guardians in the forms they came to me in, for this.

The EDS body type *needs* it's fat and protein due to it's high metabolism and finicky/sensitive cardio-metabolic system. I could've died from what turned out to be a pancreatic condition that was upsetting my metabolic state, and added to that a low functioning gallbladder, both of which were disallowing me from absorbing my healthy fats for my cardiac and neurological systems. I was literally starving of fats, along with being deficient in nutrients, severely. I felt like my heart couldn't breathe. My cells couldn't breathe. It was very scary.

At my worst I was a frail 90 ibs and had a pale yellow/gray complexion that was scary to look at in the mirror and in photos. I was having severe dysautonomia and stroke like episodes, with most of the medical people quipping at me to "quit playing games" (literally said that to me in the ER) and phoning social services on me for being "severely crazy, thinking she's so ill." The social services investigated, found me to be actually and obviously ill. They had compassion and sympathy for me and for the situation, especially after I provided my four diagnosed to them, plus more proof, plus info on EDS. They actually helped to confirm thins in ways that make "them" look like the sadistic jackasses that they are (were being at the time, especially.)

My EDS was confirmed for the fourth time in February, and they finally began to back off on trying to deny me, after years of doing so and of frank abuse. My best friend Mary Freebed knows all about it as she witnessed it. It was like a witch-hunt, which is why song 7 is a powerballad (omg, *power* ballad) about a woman who survives a false accusation based imprisonment and near execution, then goes on to sail away to new horizons as a ship captain. A friend gave me that idea when she said to me (one time when I was being triggered from their abuse) "You are the Captain."

I don't need to accept abuse and "opinions" from those far less in the know (regarding facts) than myself, and I don't anymore. I diplomatically but assertively correct and inform medical personnel who try to tell me what they think I am experiencing, when I know what I'm living, experiencing and managing... especially when they're EDS under-literate or ignorant. Many of them are, in fact at the moment (and sadly) most of them are. This needs to change but I know it will. People are speaking out, zebra grassroots are getting stronger. I have a newfound respect for myself as a true survivor. I politely appreciate the appropriate help, and I don't accept crap, because I won't be gaslit. I know what is and isn't the truth. Many of "them" seem to know it now, too.

However, "they" still can't offer me (or anyone with EDS in this country, and many countries/regions) the medical care I really need, and I'll never be fully out of the woods, especially with my spine and brainstem issues. But, even those have somehow gotten a little better in terms of progressing and my body's ability to cope with them. I would have been too weak to be a safer candidate for surgery before, but now I have a fighting chance.

The whole thing last year, and all leading up to it (including really poor treatment from the time I returned home from England with the EDS diagnosis) was a traumatic nightmare. However, I will heal and I will "again be whole" as I wrote in my song. I deeply thank those who were there for me in various ways, and helped save my life. I put in lots of work, too. I have had to work very hard to rebuild myself physically, mentally, emotionally and spiritually.

I've had to be introspective. I've been especially mute re: YouTube videos since over 6 months ago (and not intending on going back to that until further down the road, and in a different way.) I also have trauma from the way I've been treated on youtube, at times. However it's more of a distaste and a sort of healthier "Screw you. I will not be/don't deserve to be treated/accused of things that way" kind of anger. This has had me averted to youtube (in the way I knew it.)

I have to seize the opportunity before me, post getting half-better, re: going for my music art and my plans in the way I feel I should. I really feel it. I'm experiencing such joy as I develop this, in spite of living with chronic pain, illness and life limits. I've become better at managing it, coping, being braver, rising above and more appreciative of life and being alive .. and experiencing living in any way i can.

So with my partially regained health I've learned to love, respect and value myself, and never again accept gaslighting. It doesn't meant I'm healed from my traumas. This will take a long time, but the fields are now sown for the healing. I finally have the courage to do what I always wanted to do and be a pop music artist (with purpose), to use that art form as a means to express and heal. I'm in the process of stepping into my authentic self and being the music artist I've always dreamed of being, in the way that I can, rain or shine. This will mean more elusiveness due to tight fork managing. I'm resigning from activism in the way that I knew it/exercised it, and giving myself to my dream. However, I what I learned and developed into my lyrics via broader musical/poetic messages.

I still need more time to reset. I've got my music artist development and album production underway at this time, and it's crucial to stay on this path. I can become easily distractible by social media, Facebook especially. I find it pulls my energy, because I'm empathic and highly sensitive (though I've gotten better at lassoing this.) So I hope to come out of this "cabin in the woods" towards the very end of the summer. I hope everyone understands. I hope people will be ok with the new me, but those who aren't/won't be won't have to stay.. it's only a click to de-friend. I'm being very protective of any further hurt and trauma because I'm in a strong healing mode. This includes anyone who doesn't agree with the way I wish to "come into myself", heal and self-actualize. Some won't agree, people have different opinions and needs in terms of becoming their "best self." This is mine. But people need to be respectful or be blocked.

Some people will feel the need to insecurely project their crap onto my newfound self confidence as an indie pop music artist. I have to almost expect and be prepared for some degree of that, because it's a toxic world at this time. Some people have major issues that they often try to lash out onto outward targets. I can't let that stop me though. I hope people will be respectful, but I'm aware that it's possible some will criticize, and even be downright harsh or rude. If they do, then I cannot change that, however those people will be promptly blocked. It's my time to express, to heal, to "Let it go", period. Nothing can or will stop this voyage.

I am excited for the future, in spite of being challenged with EDS n' things. Hasta la vista for now!

Wednesday, July 19, 2017

Why I'm not obligated. Why I'm moving on and turning a new leaf.

I received a frustratingly disconcerting comment on my instagram, from someone who has watched over my various work over the years. She let me know her thoughts on my current status of online presentation (which is actually in transition at the moment.) So, let's call her 'Jane' for the purpose of anonymity. Though my "forks" (mental energy) are really precious and limited right now (especially since I've taken a social media break to finish websites and music) I felt really compelled to answer this question. I feel that this could be clarified now, to save myself the grief of having to answer to these types of critical "questions" later. In fact I see it as a subtle form of bullying ie. trying to "keep/cut me down" and I wish to shut it down now, and thus forever more.

Jane: "I would really like to see more on the progress of your child with autism. It seems as though you pushed away your whole issue on autism."

My answer:

I will give you an answer of where I’m at, why, and why I’m not going to do that. Then I will not need to explain myself further. For one, I’m on a break right now producing my bucket list music album, and music is now my primary focus in terms of material I put out publicly. I haven't posted anything for nearly two weeks. 

For two, I haven’t wanted to parade the details of my childs’ life on the internet. I’ve kept both my children lives hidden from the internet more so, not because I “don’t care” but because it’s our personal life. As they get older and express interest in possibly putting themselves out there publicly, they can do it, with discretion. Until then, I haven’t wished to “open all up” about our personal family life. It’s not because it’s bad or something to hide, it’s just our privacy. I show pictures about my family life in general, on instagram, here and there. Instagram also hasn't been the "principal place for advocacy."

Everything today and now is a real struggle, for me to function, daily. Some days I can barely walk down to the kitchen to make myself food and take my meds. This is all personal stuff. I work on things the way I do in hopes it’ll get better. The children have lots of support around them, their dad, respite workers,camps, they go out and do stuff a lot. I’m often too sick to go with them sadly, so it’s not as if I’m “recording” all of what their doing. This is the way we live, personally. 

My boy, the one who has autism, is doing great at camp. I am so proud of him. I'd post that now as in a "mention in passing", however, I’m not posting anything online right now and not until the end of july, because I took a break to wrap music. Like I'd said on my accounts.

I didn’t "push away” the autism issue. It's still all over my blogs and videos. I did many of them. Many. It's there. It remains up, and will always be there. One of the other reasons I took a break is because one of my websites is a showcase of all the work I did on that stuff 2011-2017. One is a showcase organizing all the activism I did, to "close" it, and one is the music site, separate. I want the best of what I did to remain up and helpful.

People make choices to move on to other chapters of their lives. It's my choice whether I want to keep talking about autism over and over, which is exhausting after awhile. It's not that I "don't care" about my kid, it's just that I'm not keen on exposing my kids' lives and private family matters online. It's called censoring. It's my personal life. I share what I choose to for the purpose of activism and awareness. 

There are major problems with autism when it comes to autistic adults right now. It’s called autistic adult self advocacy. A major issue with this is medical neglect. The former is all why I felt compelled to share my experience more so than my childs', specifically. Autistic kids grow up, so this concerns my child and others. Apparently the lifespan of autistic people is shortened and averages 40-60 yrs old. This is mostly due to things that happen to autistics in adulthood. Risk of developing chronic illness is very high due to genetics; Lupus, EDS, MS, etc. So I felt compelled to share this related experience. It's happened to me. 

There is also a lot that I don't share, because it was extremely traumatic and/or it's very personal. Doing the activism and sharing what's needed to make the point doesn't mean I need to "share all." As I've matured, I've become even more averted to sharing too much personal of my life. I'll put a personal journal entry on my blog a bit, but even then. 

It's very important, also, to know that there is a lot of conflict going on about autism right now. The language being used. Types of therapies. If you put things out there it's likely to be contested etc. I have no energy whatsoever for all the comment threads of debates and arguments. None. I even deactivated from FB at the moment. I need recoup. I wrote a lot about what it is like to be autistic .. and what happens when people don't get help. I helped some with this, and that's good, but I am too tired to keep doing it. 

I am trying to move on because I have burn out. I am now dealing with a major illness with shortened lifespan. I have issues with internal organs. I'm on pancreas, liver and heart medications, spine is in bad shape, hoping for surgery in the future to improve my life quality etc.  if I am even a candidate. It's best I don't elaborate too much other than say that my life quality is quite limited and poor. Regardless of what people "think they see" this is my reality. Period. Much of illness is overall invisible (compared to how bad it actually is) but I'm really sick. It is now time to play and enjoy. That is my right. That is what I am doing.

I'm working on my bucket list music album, which is a choice that any reasonable person should respect given my situation. My husband and good friends support me getting this music out and pursuing it as it was my dream since a child and long overdue. I sacrificed it for the sake of the community activism and although I'm very glad to see that my work helped some people, it is time for me to do this for me, and focus on my music and having some fun. Because I am always in fatigue and pain, I need to try and "steal joy.” 

Yes, there are serious human rights issues with care for people with the illness I have, EDS, and this needs to change. I’d almost say it’s more serious than the autism issues, but they still need work too. All this overlaps. However, there’s lots of other great advocates out there right now. I don’t need to keep “taking it on.” I’ve done what I was able to do. My younger child has the gene to be affected by EDS in his future so that concerns him too, improvement of EDS care. It’s a serious issue.. and a lot of people on the autism spectrum have EDS, there are relations genetically. I've said lots and several others are talking about it. 

Also, these issues all relate to bigger things. It's more broad than just these matters. It's about the state of the world and that is more what holds my interest at this time too, though I have to express that through art, or rather "artivism", to be able to do it non-toxically. That is what my lyrics allude to, which is more relatable to many, and again, in a broad way. The bigger concepts here are struggle and hope. Evolution. This can be expressed through art, while I have fun, and keep my family and personal life censored to my comfort level. 

My approach now is going to be like this, art-centred with dashes of "artivism." Hopefully, some people may see my rising above and pursuing something I love deeply, with the only energy I have to use, inspiring and empowering. Hopefully it'll bring light to the issues I deal with and worked so hard to talk about/advocate for more specifically, in the past. As for all the nitty gritty specifics, I left it all where it is, including in this blog, Brazen Musings of a Rainbow Zebra. But I have "hung my hat" in terms of continuing on with such assertions, re the activism, in the ways I was going.

So please think twice before criticizing my choice to walk away and keep it lighter, rise above, play, and do something nice for me. My family benefits when I'm happier and not all "fighting in angst." I just need my art and my music to heal. I need healing. The other stuff is over. Please respect that, and respect me, or leave.

I cannot and will not tolerate any trolling or “critical type bullying” i.e. picking me apart because I look the way I do so you think that means if I dress up and have fun I’m being an “arrogant b***” so I better wear less make up and get back with the self-sacrifice activism to “prove my humility" or otherwise I have somehow "turned conceited." I can see why that could be assumed, but in the same breath, given the circumstances, it's really angering because it's an ignorant assumption. It is a form of trying to cut me down ie. pull me back down. I have worked hard to try and heal from the inside out after that has happened to me several times before. I will not jeapordize that now. I know how that kind of "cutting down" works and how that feels when it happens. I feel it. But I can say "no" and I am saying it now.

People don't like me calling it out for what it really is? Too bad. This is what it is. But been there, done that. Not accepting it anymore. I nearly sacrificed myself over that sh**. Done. I am entitled to play and enjoy. 

For the first time I have long painted nails, not fake, natural - and I love it. I'm not apologizing for any of it. I’m pretty well terminally ill now, I live in severe pain with shortened lifespan, and it’s time for me to “let it go” like the good ol' song from Frozen says, and just be with my art. 

I don’t need to put my children and family on display on the internet. I don't need to be thought of as "self absorbed" because I choose to censor most of my personal life and, for once, put my dream first. This is about music art and selling an album with hopeful, purposeful but also fun and catchy lyrics. An album that will be helpful to people too, and be enjoyed, but while I'm also enjoying. That is what I want to do with the rest of my time here on earth. Please respect that or leave. Thanks. 

Tuesday, July 11, 2017

Beautiful BC memories, journal

The recent negative politics and disappointments re: the state of provincial healthcare and lack of delivery, and my battle with illness battle has caused me to forget about the beauty of BC.

Gawd, what a beautiful province I live in. I wish I could see more of it again, but I'm grateful that on several occasions when I was young, my dad drove us through many parts of it, stopping to stay for a day or two at each, when we'd drive through it in order to get to Alberta to visit his family. We got to experience it like that. It was really fantastic.
We mostly took the very southern routes through, practically edging the US border, ending with going through Banff and Waterton etc.. though on the way back we'd go a little further North, a couple times through Jasper and Yoho I think it was. It's amazing how vastly contrasted our province is, in terms of climate. I'm looking at pics of the Okanagan Valley and it's practically like some kind of "mini California" in the warmer months.. Amazing places to swim (lakes) and of course, all the *amazing* fruit stands. Omg  I am a stone fruit fiend (cherries, apricots, plums..) So it'd be my heaven. We'd get practically drunk off the fruits, and be, ahem .. needing to make extra bathroom stops lol  ..
I saw some pictures this morning, which gave me such fond memories of my childhood. We'd go through the scenic routes, stopping in various spots of the Okanagan Valley; Osoyoos (the mini northern desert) Penticton and Kelowna especially. Then the Kootenays, then Banff (the latter of which belong to Alberta actually lol - but that's kind of odd because after Banff, it all goes flat, and then it really is like southern Alberta) I remember the ground being so hot, in Osoyoos, that it would burn our feet! This is in summer of course. You have Kamloops, the Okanagan, then you have the beautiful Kootenays, Nelson, Castlegar Valley..Haha my dad used to sing this silly tune when we'd arrive in Castelgar "Here we are in Castelgar" In a super low baritone voice, and we'd laugh..
Random fact, you can get a great bowl of Borscht in Castlegar, courtesy of the Russian spiritual christian Doukebors' influence there ( .. but interestingly, they're vegans! Yes, polar opposite to russian orthodox; russian hippie/spiritual vegans lol. Imagine Russian veganism. Fascinating ..

Go up further North of BC and things change a lot, as in, it's a lot cooler in terms of climate. Well duh, it's further North lol. I'd like to see more of the North actually, but the Okanagan Valley is amazingly and fantastically summery in the summer. It's like Cali for real. In fact it gets scorching much more so than we do here on the souther tip of the Island!
I live in a beautiful province. I hope we can drive through it like I did as a child again one day, so I can re experience it as an adult. If and when I get this appointment with Dr Raj (dysautonomia doctor) in Calgary (my internist did refer me, it'll be a wait) I think maybe I'd like to take a drive through BC like we did!  I think i'm adding that to my #bucketlist 

Declaration (catharsis)

(cathartic final declaration to "jelly bully"/psychic attackers)

I refuse to accept any more barf spewed at me by others' hateful envy. It's like, sorry you have a personal problem of self-loathing that you've chosen to transform into sadism and try to project out onto me - but here's a mirror faced back to you. Here's a deflection .. and here's your bowl. Use it, and then go call a shrink .. and believe you me, that's me being nice.

Should I care about your feelings when you have cared not for mine? Maybe I shouldn't. But in some moralistic sort of way, I do. I have some form of mature consideration for why it likely is that you (try) to do what you do, to me, or to another, in a similar way. But that doesn't mean I'll let you abuse me *a second more.*

Regardless of your deep-down reason, your deep down problem, it's not okay to lash out on me and abuse me. For one, you're making shallow, juvenile assumptions about me and my life, when you don't even know me. So it's not okay to scapegoat me, I will call you out on that, and from now on, as aggressively as needed should it arise.

I'll have my hands in a moment of prayer for sad little you over there, being so hateful. But touch me and those hands will shockwave you back against the brick wall on your back. You will hurt me no more. Physically, verbally OR psychically. Hear it: You will hurt me no more. You will accuse me no more. 

Yes, I can be a bitch...but when it is needed in the name of right. I'm one of the kindest bitches you'll ever meet. I'm a leader, warrior, friend, a helluvan advocate for your injustice and pain. I have been the wounded healer for people like you. Have some respect, and aim your arrows somewhere where they deserve to go.

So go look in the mirror and call your shrink. I've been wounded enough. Hurt enough. I'm scarred enough. I took things to heart. But now, I will now sit here on an armchair, with my sceptre and my crystal ball in my "castle on a cloud"  - like Cosette - making peace with my painful life, "letting it go" like Elsa, and doing what I want to make my life as palatable as possible in the wretched circumstance. Reaching for the stars, for peace, in the end. 

Don't f*** with that. Don't f*** with me. Get off my path, or brick wall "Voomphed" you will be. That is a warning. So Mote It Be.

I will never stop dreaming

(from instagram)

Below. A pic of me at the #park with my kid #theotherday. I'm #dressedup and wearing my #pumps. I'm #outinthesun amongst the #flowers. I am #grateful

I may not be able to go camping yet, or to big loud concerts in a mosh pit, or ride scary rides at the midway, or go on big trips on planes(unless its for medical) but every little thing i get to do is an #adventure for me. At least I'm not totally housebound and bedridden and super weak like I was before. Like some of my #zebra friends are. Due especially to #medicalnegligence Near dead i was. Drs barely helped so i took matters into my own hands. I survived it. 

I managed to get myself at least partly better, tho it was scary and traumatic, and i still fight to manage this illness daily and I'm still #lifelimited. I could possibly fall back and sometimes i do a bit, into flares, but i can eventually get up again.

Many of my body systems, including pancreas, liver, neuro, cardiac, are damaged, messed up. But I managed to turn back the clock a fair bit, so I can #stealjoys more, and do my #bucketlistdream things.. 

I am gradually working on reaching my bucket list dream. I will be the queen 👑 of my dreams somehow, someway. One dream is get out my music, another is to, in my own way, make an impact so people like me, zebras, autists, get treated better and get the help they need so they dont end up damaged and suffering, and more. 

People who don't know my story and don't know what it's like to be fighting a major illness may see me as somehow indulgent and/or conceited in what i do. They're rude and disrespectful because they're #ignorant

I'm just trying to enjoy the hell out of whatever out of life I can get. I will never stop trying. I will never stop dreaming. 

Because I do, after all these years, finally love wnd respect myself for real. enough to know i deserve happiness however i can get it. I deserve joy. I give out love to others and causes i care for but i can believe i deserve it too. I don't need to keep being a "wounded healer" .. lets rid of the first word there!

I don't care who is threatened by my light, offended by my self assuredness, by my journey to love myself for who I am and play as I never could before, even as a child/teen. I deserve to be like this for my last phase of life. For my last fight for life. I am a #survivor and I am going to #thrive - and be DreamerQueen - whether you like it or not. 

"I don't care what they're going to say. Let the storm rage on..." - (well, u know where that's from)

Monday, July 10, 2017

Even Satan thinks the shoe factory's policies are kind of harsh ... 

It's disgusting, unhealthy and wrong for people to be working - particularly on their feet in a warehouse factory - from 6-7 am to 11-12 at night 6-7 days a week. But it happens all over. Plus how they get treated of course. I read they only recently got Sunday off .. wth? .. how can a body go on that way 7 days a week. That's how you get sick and die eventually, unless you have a super body. Even if you do. That's rough on the body. It's all awful. All #darkages. Such dark ages we live in now. So sad.

Yep the above happens all over the world a million times over. Of course it's not confined to shoes and Ivanka, but it's good this particular case has been exposed. Now they'll have to answer to it and make some adjustments for people who need employment and are being mistreated. They can't just "turn a blind eye" as they all like to do.

Working 7am-12am, 7 days a week is not a life. It's utter slavery. They even do worse than that to the people in the Ethiopian factories, paying them a third of the wage they pay chinese workers. Insane. People shouldn't have to agree to being slaves just to survive, to attain their basic needs. Such irony while the slavery they commence to steals their basic rights away from them anyway.

Everyone deserves to be rewarded for an earnest job with some pleasure. It should be illegal, otherwise. But it's far from illegal, and it's rampant. People everywhere willingly give up their quality of life so others can have an excess of life quality. But it's all ok in the name of the law ..or in the name of what is not a law when it should be.

Laws are all too often written to benefit business and profit, not people, with several loopholes allowing abuses of all kinds. Law is utterly corrupt. Must make more laws to regulate how laws are written.. Heh. 

Oh if only we could have Jesus Christ, Prince Siddhartha, Mother Theresa and a few other spiritual leaders return to walk the earth and start thwapping several deserving people hard over the head, then proceeding to leave them the gift; a screaming gargoyle wearing a diaper which regularly requires changing. This gargoyle will follow behind them (and no matter how many times they try to get rid of it, it'll reappear) until they clean up their act and start operating by an acceptable moral code. Actually I don't think any of the former spiritual leaders would resort to this kind of avenging, I think we'd have to call upon this guy for that;

"Seven am to Eleven pm - with only one 20 minute lunch break - Seven days a week...and you only just decided to give people one day off?? Wow you guys, that's kind of harsh, and it's unhealthy too. People need to be rewarded with some degree of pleasure you know. Especially if they work that hard. I think you should re evaluate your policies."

... Hahahah .... 

I think everyone would be forced to change their ways if only such things were possible. But alas they're obviously not. 

; / 

Rise above those who don't get it

Tuesday, July 4, 2017

On Natalie Hage, the plus sized model who confronted her body shamer

My moderate viewpoint on Natalie Hage, the plus sized model who confronted her body shamer (

I don't think there's any harm in exposing the body shaming incident in the way she did. She didn't reveal the mans' face or name, and she was calm and collected, but assertive, the way she defended herself. She saw what was hurtful, she needed that closure, she took her power back in a reasonable way, without getting immature about it. Technically it could've invaded his privacy I guess, from a legal standpoint (that's likely debatable) but the man was cruel and deserved what he got. As for my opinion on her weight, *Oppp* I'm gonna say it (omg I'm suuuch a bully *rawr* feed me a piece of cake with a nightholwer flowers in it n call me a horrible savage!) She is indeed quite big, but, I gotta say that although it could be unhealthy for some people to be that big, she wears it well and is indeed very beautiful. Whether it is a health issue or not for her is ultimately, as she herself said, her business. Well, hers and her doctors. 
But maybe it's fine. Some people's bodies very stubbornly retain weight and it's very hard to lose that weight, in fact, some bodies are actually healthier remaining a little overweight - and if they try to lose it they sometimes find themselves with triggered health problems.
I've had to reflect on this because I think it happened to me, to be frank. After I got really into being thin and hit the gym/crash dieted a bunch, I lost a lot of weight and my body type did something of a "transformation." At first it seemed great, but then, it began to trigger my EDS to become more metabolic and internal, in a gradual downhill spiral  .. I was never 'big" but I was *quite* curvy averaging 135 ibs (i'm very small boned and short so that's a bit bigger for me) ages 14-20, apple cheeked face, big bust and round wide hips, full legs, very curly shiny hair - and a lot healthier to boot. Then I became obsessed with being more "petite" because I felt "short and stumpy" and so I wittled down to 105-110. It was like a layer of baby fat protecting me, and I never gained it back, but I was never to be the same health wise after that. I had aches and pains before but worse started happening after that. So that made me think "hmm maybe some people should not just assume they're unhealthy because they're bigger, and mess with being naturally a little heavier, and BMI is more individualized than we think."
Basically, perhaps some people need to let sleeping dogs lie. I have observed people who've gone and done gastric bypass and end up chronically ill. I have also observed and known people who are bigger and eat amazingly healthy and have lots of ten times more than I'll ever have lol. Their bodies are just most comfortable being bigger. However, some people who are big are ill because of it, resulting in diabetes and heart problems, and they really must lose weight for that reason.. So it's really up to science ie. genetics and individualized biochemistry, whether or not that's health for her to be that big. The only thing of importance is health. Some body types actually get away with not having health issues and being quite big .. that's between her and her doctor. I can only say that judging by her glowing skin and such, her body is coping with being that size quite well, and it's not necessary for her to try and lose weight, unless she wants or needs to lose a little..but she looks beautiful and quite hot fuller figured and iI couldn't imagine her "thin" anyway. There's no need.
That's how I see it as a moderate independent free objective thinker (neither uber-lib, nor far right biggot lol )using my logic and applying my own experiences/observations. I'm also allowed to have my own opinion. 

Omg aren't I so "mean and judgemental"? ;) #moderatethinker #freethinker #notpolarized #bekindandreasonable

N.M. Rose Guedes 

Tape Matters

The difficulty with using the medical barrier tape is that though it works well as a cover and to support ( ie. it holds in my bones and joints) it is firm. This means, it does not stretch like kinesiology tape does. Ironically, the stuff is called "Cover Roll Stretch" tape, and thought it's an excellent hypoallergenic product, it is not "stretchy." I think the name it refers to "being able to stretch without injury" or something like that. But for me, the difficulty with firm tape this is I still have to be careful when I move about, since my skin and it's underlaying tissues are also too soft and stretchy. 
So because the tape is more firmly fixed in place, I can (sorry to be squeamish) end up ripping my skin and it's underlaying tissues off my bones a little (uggh!) if I move too sharply and abruptly, essentially tearing them too. Sounds little counterproductive hey?.. and this is why I went for KT or Sure tapes over the Rock Tape, which is heavy duty and hard, non-stretchy variety. However, keeping my bones, joints and verterbrae together still outweighs this drawback - as long as I exercise a little caution. I'm still grateful for cover roll barrier tape overall 
But I still do prefer the elastic tapes of course, and I'm looking forward to this Vara hypoallergenic and waterproof elastic sports tape which we ordered. I hope it's true to it's word, and if not, I can get my money back and keep using cover roll. However, I'm also starting on my Cromolyn (mast cell stabilizer) later this week, after I complete this mast cell test I have to do through the hospital system, on Wednesday.
I'm not allowed to start Cromolyn until then, as it could produce a false negative  .. but between the Cromolyn use, this new Vara stuff (*fingers crossed!), and/or cover roll, I will somehow remain able to tape! If I can't tape, I'm way more limited and ill, so it's really essential to find a way. The whole tape issue I had, which arose the other week, produced a spiral-down; Immune flare resulted in having to remove my tape, resulted in injuries and further flaring..
Really, Kinesiology tape is so very helpful to many zebras. We have options..I'm glad! Hopefully too, modern cutting edge bracing which will somehow be of similar calibre to K-tapes will be available in the future.

N.M. Rose Guedes 

Monday, July 3, 2017

Spigraine day

June 29, 2017

It's a "spigraine" day. (spinal migraine) I tend not to bother elaborating on this kind of suffering, this kind of day (or sometimes days on end) because no one really wants to hear it that much. You feel like a bedridden non-exister. Locked away in a sick tower from hell. I wouldn't wanna hear about it - It's tragic as f***. Have to do something to make up for it, somehow, find peace in the end. But anyways, here's s Spigraine day, read if you dare;
Yesterday I actually had some spoons to go out, though I also had to (to get my IV.) But I have been untaped, when my spines' pretty unstable, and I went around untaped yesterday, to my infusion etc. I'd arrived with my thoracic brace earlier but then took it off later, after my stomach started bothering me too much to have a tight girdle around it. As I exerted, as i moved about, I felt areas of T spine shifting very squeamishly (damn it my thoracic needs to be *fused*) then it started to ache deep. Like bone cancer almost. Like a bad toothache - in your bones..throbbing and aching from inside out.. that's what EDS pain feels like to me. Sorry to be graphic but, for real.
I'm paying hard today. I feel like I am on fire, as well as aching. The difference is it's not just a tooth, it's bones. I can't call a doctor to pull out my bones like I could call a dentist to yank out my tooth. Have to wait until the bones' intense anger subsides. Until then I'm a hostage of my body. In bed unable to move.
Then i hurt my arm trying to move my computer to protect my mangled and uber inflamed spine.. and I can't even ice it cause ice hurts my skin. Tried. In vista collar, but it's hurting me. But it's hurting me more, when it's off, I feel like my skulls getting crushed. The hurting gets so bad you want to throw up or pass out, and you drip with sweat, sometimes you tremor and shake.. it feels like your dying of cancer or AIDS or something .. Not exaggerating. For real.
To boot, GI is still upset from antibiotics and food reactions (hence why I'm starting on cromolyn, I have inflammatory GI from almost everything to some degree or another, and I can't starve.) I can't stand this untaped stuff.. and I'm stuck unable to begin my cromolyn .. to help settle my stomach and stop this skin reacting to tape bs .. until I complete this mast cell test ..which has to be on monday thanks to holiday. My skin may settle down, now that I'm done antibiotics though.
Hope barriers will resolve so I can tape again. Need to. EDS is gutting me w/o it right now. I bought this medical, hypoallergenic barrier tape stuff from Rexall, to put under the tape, and think going try to use it this evening.. I can't handle being untaped and falling apart like this, like from the inside out and outside in. EDS is gutting me right now.
Thanks a lot holiday. I don't feel that "in the mood" to celebrate a country which has mostly failed me re: my medical needs, and has let me rot (literally) and dragged me down so far in refusing to accept my condition that now I'm deeply so sick with, and probably shortened lifespan/gradually terminal. Because being a pretty living corpse is so useful.
Trying to do something here from my bed. In vain. Pretty damn tough. Feeling like a tubercular, black hooded little lady at the controls of a machine .. somehow .. something .. can't just lay here. Uggh ..

N.M. Rose Guedes 

Superfiical 'Anti-bullying' ; A divide and conquer strategy (while real bullying remains endemic)

I get easily pissed off and irritated with these poser "uber liberalism" people on about "anti-bullying" and "expressing individualism" because I feel like it's really juvenile and surface based. It's so shallow compared to what's really going on. Compared to the real, deep seated adult bullying epidemic. When people who go around supporting all this "uber liberalism" they don't realize that they're only advocating freedom and respect for a select few types of "cookies"in which have been, thanks to the media, identified as "marginalized" .. as if that's some sort of "trend."
All while the rest of people, in the millions, who are insidiously marginalized and bullied to their deaths, continue to be abused...including by the "uber liberals." The entire global systems are based on adult bullying, and yet the 'lib-goofs" are all like "OMG WEHEHEH" over a fair select few people identified in the media as "being buwwwwied"
Oh please. It goes way deeper than that. People be acting like wannabe-enlightened preschoolers. It's like go sip at another pink unicorn frappuccino, while you wear thick rimmed wannabe geek glasses (because it's now "cool" to be a "Thooper Poor Marginalized Wallflower Geek") talking about how mean everyone is to people who want to breastfeed their eight year olds in front of everyone in the grocery store, while you also insidiously bully and criticize people who can't necessarily AFFORD to be AT the grocery store today, while you criticize the barista who made your Frappuccino, who has bleach blonde hair and seems obnoxiously loud, and "boppy" and "stupid" ..
Wouldn't it be interesting if there was more to that girls' story, like... you didn't know that the girl has a diagnosis of severe ADHD with severe Nonverbal Learning Disorder, and she got this job through a specialized vocational program, and although she's outgoing (and trying hard to be "acceptable") and attractive-seeming, she behaves a little oddly and seemingly "over-confidently"... It's because she too is disabled... though she's not wearing thick rimmed wannabe "I'm A Nerd" glasses and being all disgruntled and introverted like you are. So you pathalogize her, and laugh at her and treat her like she's a b***.
It's interesting when what you see isn't what really is, ie., she too is "different", in a different way from you. She's in fact technically "lower functioning" than you (for lack of a better term) .. but you pick on her, you snub her at the till, for being "too obnoxiously confident." Actually she has a disability, worse than you do, but she is making more of an effort than you, to socialize .. and how she presents doesn't fit into what the media cites as "Buwwying."
Then another charismatic girl with neon pink high heeled boots and heavy make up walks in, and she's also using a cane, and without knowing her, you sit there sipping at your pink frap while you assume she's an attention-seeking bitch who, because she happens to be physically attractive, obviously uses the cane to garner more attention to herself (not because she was bit my a Lyme infected tick, oh no... ticks don't bite pretty people .. didn't you know that??!) and, she wore those boots and dressed like that to "make other people feel bad about themselves and oh so narcissistically seek attention."
She's such a horrible attention seeking person isn't she? Oh no, she doesn't dress like that because she's a creative artist type and a woman who enjoys fashion, trying to rise above illness and chronic pain on a good day. It's almost as if the only "marginalized" people getting sympathy are those who fall into a certain stereotypically marginalized profile. The rest still get as bullied as ever .. and no one gets it.
It's funny how people are encouraged to "teach their kids to stand up to bullying in the schoolyard" - but if you try to stand up to bullying in the adult world, you are so easily ostracized, pathalogized, and the "who's the psycho" finger is pointed back out onto you. It's hard to stand up to bullying when it's invisible, because there's such denial of it's occurrence. We almost need to coin a term "Invisible Bullying" in order to be able to even call it out ... though there would be drawbacks to that.
You are somehow seen as horribly self-entitling, even narcissistic, for reacting to and being upset about being bulled unjustly, especially if it cannot be super obviously proven. Honestly, in spite of the utter superficiality of the uber liberalism, propelled by the trickster-esque mainstream media, it is total hypocrisy and bullying is not only still rampant, but endorsed.
The movie Zootopia is a brilliant depiction of these kinds of double standards. This is intentionally endorsed by those in power, as it's a divide and conquer strategy. Zootopia showcased an excellent example of the "divide and conquer" tactic by gradually coercing and brainwashing a more assuming marginalized group (prey) to actually gang up on and begin to discriminate against/bully a less assuming marginalized group (predator.)
This happens in real life too. One example is what tends to go on in the autistic communities. We're often seeing one more assuming type of autistic person (introvert/wallflower/nerd/"spock aspie") get more acknowledgement and sympathy for "struggling with aspergers" more so, all the while the more artistic, socially motivated, outgoing types remain viciously picked on by both society in general, and the aforementioned in autistic groups. You'd think the aforementioned would support their fellow autistics, but instead they're often insecurely trashing them and putting them down for being more charismatic/socially motivated ...
I hope they eventually begin realize that the more socially motivated autistic people actually take tons of abuse too, sometimes more so, and that they should really be more empathic and supportive. They struggle just as much, albeit sometimes in different ways. We're all different. But here's one example of a minority group succumbing to the subliminal effects of "divide and conquer." Although I have many great fellow autistic friends, I have also been really hurt by some fellow autistics.. This is why I had to break away and remain wary. But back onto original subject ..
In spite of superficial crap, we're still very much expected to accept the BS Illuminati-esque "get down in your place" programming that if we're being insidiously bullied, we can't really call it out without being framed as self entitled psychos. We're just supposed to sit there politely, smile, and take it, and not make a fuss...and underneath the rouse, that is how the world goes 'round. The only thing acceptable is some kind of weird opposite extreme, if it fits within what's "trendy" to be "discriminated by" ... So silly. Such double standards. I hope I make sense.
Certain people run the globe in the unfair and greedy way that they do *because* the rest of us are subliminally trained to just take it. I mean the real bullying. Not superficial stuff. If we don't take it, we're framed as disgustingly "bad" people who obviously "care too much" about ourselves. Oh heavens! How dare you care so much about your own self worth, how "shameful" and "inappropriate" and "rude" is that? "Get back down on the curb bitch. There's supposed to be a shoe on your head. Shut up and don't talk. Just smile and say something "fun and shallow" .. because you're part of my ladder."
Right, and I'm classified as an oppositional b*** because I didn't want to be part of a human ladder. I've been seen as somehow conceited, and framed as narcissistic, because I believe I have worth. I was on a quest to define my right to have self worth, to self actualize, and in that, I got totally bludgeoned and I'm now scarred to hell and weakened physically.
I was seen (by some) as though there's something "horribly wrong with me" for identifying when I'm being bullied and saying No. I was supported and backed by some in my community, who related and appreciated what I was dealing with, but not all. Some hurt me even more deeply, for trying to stand up for myself, which is the last thing I expected them to do. They attacked me when they fell into that vicious, empathy quashing "divide and conquer" trap.
Many, in fact those (sorry for the term again) "higher functioning" and less marginalized than me, and threatened by my staunch-ness and my light, picked me apart and became attackers. I felt like a young Malificent trying to enthusiastically assert herself,  self-actualize offer her viewpoints through her experiences in a genuine attempt to be helpful,- and they were the "wing-slashers" in the night. I felt heartbroken, shocked and betrayed. I had to do a lot of healing and it's been continuous.
It was especially because the ways that I am bullied are somewhat insidious (albeit vicious) and, not necessarily on the "In ... Ohh Poor You" list. So really, I do resent all this superficial "liberalism" in light of so very much underneath, which is being ignorantly missed here. I have experienced it. I know what I'm talking about, and I see examples of it all around me.

 - N.M. Rose Guedes