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#noshameday
Hi! I’m Ari and I’m a chronically fabulous spoonie! I have had gastroparesis my whole life (my stomach and small intestine are both completely paralyzed ) ehlers danlos syndrome lll, fibromyalgia, scoliosis, femoral acetabular impingement, endometriosis, asthma, POTS, and other issues. Can you imagine never being able to eat or drink any liquids or take anything by mouth EVER again? With gastroparesis I can’t. I’m completely NPO (nothing by mouth) and am entirely reliant off of TPN through my hickman central line in my chest which is causing liver and kidney problems. I’ve exhausted all treatment options and am at a dead end right now. Due to EDS my joints constantly dislocate and effect issues in my hips and joints I already have causing a ton of pain and issues and leaving me a full time wheelchair user. I could go on and on! But the point is I have no shame in showing others what I go through! I will continue to raise awareness and help others as much as possible! I’m so thankful for the amazing spoonie/hospitalglam/chronic illness community on tumblr I have met amazing people through it and have learned to feel comfortable with my illnesses! Chronic illness and disability at a young age is tough, but that’s why we should show others just how strong we are! I’m an active cosplayer, con goer, gamer, anime lover, music enthusiast, and all around dork. Don’t let your disability hinder your passions or confidence you are all so amazing <3 Spread awareness and support your local handicapable chronically strong dork today!

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Since today is #noshameday I thought I’d share my story! My name is Francesca and im 16 years old. I was born with a congenital disease where none of my bones fused correctly together. When I was three I started taking ballet classes and I fell in love! When my family moved to America opportunities started opening up for me. I began working with a professional ballet company and by 15 had signed a contract that would send me to Atlanta to finish high school and join their company! I was so amazed that I ignored all my chronic back pain. There wasn’t a day when I wouldn’t cry from pain. Eventually it got so bad my doctor ordered me to take three months off. So I did but things got so bad…. I lost 40% of the feeling in both my legs, I began having seizures and I was bed ridden. My doctors and I began looking into my treatment and discovered my back was broken. Like, destroyed. Damaged nerves, fractured vertebrae, herniated disks- the whole nine yards. They sent me in for surgery (about a month ago) to hopefully fix me. I won’t ever return to ballet and I’ll only get 80% use of my legs. Because my body has been under so much stress I’m bleeding internally. They can’t get me into surgery for that until im off pain killers. The spine surgery takes a year to heal. For the next year I’ll be getting transfusions to keep me alive. Things are so difficult but I’m happy right now! Just because I look fine on the outside does not mean im healthy.

Goddess Archetypes.

Goddess, from a feminine perspective, represents a particular feminine archetype. Archetype, as a concept, is at the foundation of Carl Jung’s psychological works. Archetypes are deep enduring patterns of thought and behavior laid down in the human psyche that remain powerful over long periods of time and transcend cultures. Archetypes form the basis for all unlearned, instinctive patterns of behavior that humankind–regardless of culture–shares in common. Archetypes are found in dreams, literature, art and myth and communicate to us through many symbols. Archetypes compose the ultimate source of psychic symbols which, in turn, attract energy, structure it and influence the creation of civilization and culture. Consider: male and female organs are, in fact, symbols for the archetypal energies known by the Chinese as yin and yang. Archetypes also go beyond the psyche bridging inner and outer worlds.

A goddess is the form that a feminine archetype may take. Goddess types represent models of ways of being and behaving that we women all share and recognize from the collective unconscious. In fairy tales this archetype may be revealed to us as a queen, a princess or a witch. In our nighttime dreams we tap into the collective unconscious whereby we access the common pool of archetypal images. Goddesses, as a feminine archetype, remain alive to this day in the psychology of women; and, depending upon which energies are more pronounced, influence her personality with a distinct character, a way of being, a way of relating in the world–a way of offering her special gifts. In other words, women are a blend of these types with particular types predominating while other qualities may be more recessive–out of her conscious awareness.

You can’t keep saying and doing the same things and expect better results.  When you see your behavior clearly you can frame new responses.  There are many techniques for increasing self-awareness.  Most involve mindfulness– observing what’s happening in the present moment:  your thoughts, emotions, and bodily sensations.
—  Joan Duncan Oliver

“who’s the girl and who’s the guy?”
“why do you look like a guy if you’re a lesbian?”
“you like girls, does that mean you’re attracted to me?”
“it’s just a phase.”
“you’re a sin.”
“sorry but this is the girls bathroom.”
“Adam and Eve.”
“dyke.”
“are you gonna get a sex change?”

I can’t speak for everyone in the LGBTQIA community , but I am speaking as an openly out lesbian . hearing these words and phrases almost everyday is sad . however , I am still here . I’m still alive . To those who have committed suicide , I can’t image what your friends or family have said to you . I everyone who took their life was still here , but even on earth or in spirit , we bring awareness . LGBTQIA community members are my family . We always work together to fight for our rights . 🌈

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Okay so I have no idea if this qualifies for #noshameday
I have Tourette’s syndrome, which is a neurological disorder. Tourettes consists of repetitive movements (motor and vocal) that are called tics. I have around 15 tics, which is a medium amount. The cause of TS isn’t really known, so there isn’t a cure for it. However, there are certain medications that can help a lil. Some people with TS can control their tics for a certain amount of time ((but it’s not v easy and the restrained tics can pop up even stronger after))
I know that my TS is nothing compared to the stuff a lot of the disabled community deal with. But I have gathered a lot of confidence, strength and patience over this past year. I have been able to confront my TS and actually tell people that I have it instead of just making excuses.
My TS gives me bruises, sore jaws, legs, hips and hands and causes me a lot of distress in general. It can also be the cause of a lot of embarrassment. When people ask/talk about it rudely (ex: you look weird when you do that / stop doing that) I get a lil offended ofc, but I get it over it now quite quickly. But like if people were to ask me (ex: why do you do those movements/noises?) in a kinder way, I am always up for explaining.
Also, not everyone who has TS has the swearing tic (see: coprolalia). That’s actually only a small percentage of the TS community ;)
Feel free to talk to me if you’re curious or if you have TS!!!
I also just wanted to include some cute pictures of me, so there you go.

Everything that you need exists in this present moment, and this moment is all that exists. In its brief flicker you will find all the time in the world. Through it you will contact the Living Information that will guide you with infallible direction. This present moment is the stargate through which you will leave the prison of human definition and expand into an awareness of divine perception. It is the crack between the worlds, not only the worlds of past and future, but words of time and space, spirit and matter, form and being. It is a timeless zone, the gateway through which you will again begin to participate in the adventrure of creation.
—  Ken Carey

So I was totally NOT going to do this, and it’s still pretty scary, but here’s my contribution to #noshameday. P.S. I know I’m super late to this, oops.

What encourages me to upload this was the many people I saw who also have “invisible” illnesses like I do, as well as those who admitted denial about the true nature and reality of their illnesses.

I have narcolepsy–the sleep disorder that people think is hilarious to make fun of. Because when someone unknowingly falls asleep while doing a normal activity, many times injuring themselves, that’s just so funny, right? I also have RSD, a chronic pain condition where, during flare ups, your skin feels like it’s on fire and can’t be touched, which causes problems with your whole system like purplish hands and feet, swelling of the joints, etc. Doctors usually misdiagnosed it as fibromyalgia, as well as plenty of other things. I got treatment for it, which is really learning how to manage and reduce flare ups, and ever since, I’ve been almost in denial that I even have these things. So tired I feel like I’m glued to my bed? Oh, I just stayed up too late. A shit ton of my hair falling out, leaving little piles on the floor at my desks in all of my classrooms? I just tack it onto stress and quietly sweep it up. I have been exercising more, in an attempt to keep my health up, and I find myself getting really upset when I can’t do what I had set my goals for or what others next to me at the gym or whatever are doing. And it’s so ridiculous for me to do this to myself because many people with my illnesses are barely functioning, and for years of my life, neither was I. I have several doctors appointments per week that I have to leave school for, but a year ago I was in and out of the hospital or doctor’s office, going in MRIs and CAT scans, seeing doctors who didn’t know what the hell was going on with me so they’d prescribe a highly intrusive medication and hot potato me to the next doctor. I do physical therapy, have regular doctors appointments, have to be that one girl who brings 15 different meds and back ups and things in case I have a pain flare up on a trip that everyone is trying to just have a good time on. I haven’t really told my friends, partly out of denial and the thought that I have a complete handle on it, but also because too many of them wouldn’t get that you don’t always have to be in a wheelchair or blue in the face to have a real illness. So if any of you guys see this, tada! Now you know.. I am encouraged by all of the super strong spoonies out there, and I’m slowly recognizing that this is a real part of me that I shouldn’t feel like I have to hide or be embarrassed about.

This design is my contribution to No Shame Day. No Shame Day is a day of awareness for those with disabilities and chronic illnesses. It’s a day for us to be proud of ourselves for who we are, show no shame for our disabilities, and bring awareness to as many people as we can. Each of the butterfly ribbons stands for a different disability (some mental, some physical). Green - Cerebral Palsy, Purple - Alzheimer’s Disease, Blue and Yellow - Down Syndrome, Grey - Parkinson’s Disease, Orange - Multiple Sclerosis, and Aqua - Agoraphobia.


I have severe chronic stomach pain, and I am undiagnosed. We have exhausted all of our medical resources in our area, and are looking at seeing a doctor at one of the California State University Medical Hospitals, to see if they can find anything. I am a pre-diabetic, and  have GERD, a hiatal hernia, Polycystic Ovarian Syndrome, and Primary Amenorrhea. I am an anorexic and bulimic (both purging and non), and have severe anxiety and agoraphobia. I am also making this post for my sister, who has visual perception disorder. This is us, and we are not ashamed.

Save the life of Mary Jane Velasco! Please take 5 min to

CALL-IN: Indonesian Consulate General (Los Angeles)
Umar Hadi, Consul General (213) 383-5126

“Hi, my name is _______ and I am calling today in order to voice my concern about the case of Mary Jane Veloso, a Filipina migrant worker and a victim of human trafficking. Since 2010, she has been unjustly detained and set for execution in Indonesia. We strongly urge that Indonesian President Joko Widodo grant Mary Jane clemency on grounds of mistrial and for humanitarian reasons. She is a mother of two and her family needs her at home. We urge President Widodo to review her case and grant her immediate release. (…include your own reasons to support Mary Jane)” #activism #anakbayan #ab #abla #savemaryjaneveloso #ofw #humanrights #justice #mercy #action #awareness #philippines #filipino #filipina

ATTENTION TUMBLR PEEPS

Halt thy scrollings for 40 seconds (give or take a few secs):-

So you probably know someone that’s gone abroad, volunteering in an under developed country and came back with a tan a month later and won’t quit talking about their fab time changing the world and stuff. The Gap Yahs.

Mostly the privately educated elite who can’t wait to go and acknowledge their privilege by helping eradicate poverty in some part of the world. Usually I sigh at these programmes. Mainly because they cost a fortune and are inaccessible to those of a lower socio-economic background and help to maintain the Western Saviour narrative. I’ve always wanted to travel, and by travel I don’t mean country hopping from tourist destination to tourist destination comparing the standards of the McDonald’s and shopping malls. I mean travel. I mean live in a community different to the one I’m used to. Engaging with people of all different backgrounds. Listen to their stories. Learn from them and share my own story. Buttt this romanticised idea of travelling in my head was constantly shot back down to reality by the sound of my parents laughter at the apparently hilarious thought that I thought they’d let me go, and the eye watering price tags accompanied to companies which offer such opportunities.

But then lo and behold I heard about VSO ICS which is a heavily subsidised government programme aimed at 18-25 year olds (omg that’s me) to go away for 12 weeks (Longest I’ve been abroad is two weeks with my family, 12 weeks wooooooottt?!?!) and assist in a rural community who have specifically requested the assistance of the charity for development programmes (so less of the western saviour ideology). So 90% of the costs are covered by the charity and British Government and if I can fundraise the remaining 10%, the I’ll be off to Mondulkiri in Cambodia this Summer! And don’t worry this isn’t just me asking you to help me pay for my flights and a swanky hotel (no forreal hole in the ground toilet in one of the pics), the money will go directly to the charity VSO and their website is pretty detailed in how they handle the donations they get so check it out if you’re a bit sceptical!

I’ve spent the past four summers working and this is probably the only chance I’ll get to do something like this, and £800 seems like a daunting amount to fundraise but every little helps and even if you can’t donate, just a reblog or a share of the link would be just as helpful to spread the word about VSO and I’ll be super grateful and give everyone all the virtual hugs.

Thanks x54364 in advance and I hope you get that warm feeling of altruism after you have donated or shared the link!

https://www.justgiving.com/RachaDoesVSO


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App Turns Your DNA Profile Into Your Own Personal Theme Song

Finally, a way to self-estimate your DNA profile and convert it to music, all within a 99-cent app.

“DNA music exists within every living organism universally and now we have the technology to unlock a symphony from within everyone for a better and more aesthetic understanding of life, ourselves and each other”- Stuart Mitchel

Finally, a way to self-estimate your DNA profile and convert it to music, all within a 99-cent app.

That’s the promise of iDNAtity Audio, a new app in Apple’s App Store and the brainchild of DNA scientist Gary Cass.

You upload a photo of your face – the app uses facial recognition – and then fill out a series of questions that range from straightforward (hair color, eye color, skin color) to seemingly mundane: Can you roll your tongue? Do you have cheek dimples? Do you have fixed ear lobes? Do you have a widow’s peak?

Once all the data’s been cobbled together, your DNA profile is built and can be converted into music to be played back using a variety of synthesized instruments.

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It’s the day of silence at my school. What that means is that anybody who signed up, has to stay silent until the end of the day today when they break the silence. We do this as support for all the voices you aren’t hearing. All the people who keep quiet that are part of the LGBT community and everyone who gets bullied because of who they are. I am proud that I am supporting this.

People who can hear, please do me one little favour.

Vines are popular here on tumblr. I would like to appeal to those of you who can hear and who would be willing to do so, to please caption/transcribe the vines/mini videos you might reblog, so that those of us who are deaf/hard of hearing may also understand and enjoy the vines/short videos. 

I can’t tell you how very frustrating it is to not be able to understand the usually quickly spoken skits people act out in vines. If some of you could please take the time to do this, (it would only take you a few short minutes) it would make the tumblr experience much more enjoyable for myself and most likely for others who have difficulty hearing too.

All you’d have to do is listen to the vine/video, and type in quotation marks/italics, what is being said in the video on the post and reblog. That’s it!! You could also possibly tag it with ‘captioned’ so that myself and others can find captioned videos/vines via this tag. (Or even type the captions in the tags if you would like).

I’d absolutely appreciate it!
Thank you!!

(Feel free to share to ask your followers to help out too)

UPDATE: Since posting this I’ve been notified of three blogs that caption vines! I’ve included them in a separate post for those who’d like to reblog :) Thank you so much to everyone’s who’s helped spread the word! x ~ 15/04/15

UPDATE: I just wanted to add that captioning vines also benefits people who don’t have English as their native language, those who can’t use sound on their mobiles at the time of viewing, those with auditory processing disorder. those who struggle to understand strong accents or lisps and even for those who are struggling to process information that day due to exhaustion. It helps so many people! Again, thank you for raising awareness and spreading the word! Let’s make Tumblr a more user-friendly, accessibility-friendly site! ~ 16/04/15