slutrockerbitch [a zine]:

How to Radically Heal Yourself with Fibromyalgia (My story~)

slutrockerbitch — Wed, 22 May 2013 15:48:50 -0400

Trigger Warning: rape, death of a parent, victim-blaming, suicide, drugs, food, trauma

My mother had fibromyalgia, and I remember growing up watching her suffer with the pain, the fatigue, the ever-changing trial and error of treatments- not to mention the social factors involved with being disabled with an illness not all health care providers know about or acknowledge.

My own symptoms started when I hit puberty at the bright and early age of eight. I remember feeling so sick and exhausted and sore and staying in bed for a month because I felt sick. I went through tons of tests, but they found nothing. “Depression”, they told my mother. “Snap out of it”, they told me.

My symptoms got worse as I got older- especially after my mother died when I was fifteen and after I was raped when I was seventeen. The emotional stress triggered severe new symptoms, and living became too much. The combination of emotional and physical pain was more than seventeen year old me could handle, and I made my most serious suicide attempt. Friends found me lying on the bathroom floor, and I was transported to a hospital. I don’t remember anything until waking up the next day and ripping the IV out of my arm- furious to be alive. This only confirmed what doctors had always told me- I’m depressed. Here, have some meds.

I’m not going to go into describing all of my symptoms, because that would be exhausting and I’m using a ton of spoons as it is. If you feel it’s important for you to know so that you can relate better or whatever, feel free to ask.

I left my hometown as soon as I graduated high school- away from the people who had known my mother, whose absence was (still is!) indescribably devastating. Away from the people who called me a slut, who told me I asked for being raped, told me it was my fault, told me I was full of shit. Away from all the people I’d fucked hoping I could feel something other than pain. Away from all the friends who stood back and did nothing as I spiraled into self hate. Away from a place where I was one of the only out queer students, where I was harassed for who I choose to fuck. I don’t go back there anymore. Not only had all these fucked up things happened to me, but my body was trying to kill me, I could have sworn.

I spent the first two years of university regaining my emotional and mental health, making new friends, formulating dreams, passionately involving myself in activism so that I could fight to change things for people who were going through the things that I had been through. The summer between second and third year of university, I was hit by a car while crossing the street. Hard. My physical health continued to get worse, and getting through my days was so incredibly painful and uncomfortable that I finally made the decision to go through the frustrating process of medical testing so I could figure out what was going on. I’d watched my mom go through this, and that within itself was triggering- but I was tired of living this way. I was ready to take control of my own life.

Well, fast forward through two years of vigorous research (I’m a huge research nerd), ~10-20 different doctors, natural medicine, ~50 different pharmaceutical medications, many (often painful) tests, vitamin supplements, injections, pain clinics, various types of physical and mental therapy, and much more.. Here are the things I have discovered:

(disclaimer: This is an account of my personal experience, which is based on educated opinion and trial and error. I’m not saying it will work for anyone else, but I believe strongly that it’s worth a try- and anyone with fibro will tell you, they’ve tried a fuckton of things. I also have the privilege of having been under my dad’s health care plan while in university, and of living in Canada, where health care is generally pretty affordable.)

Fibromyalgia is real.

Some doctors will not acknowledge fibromyalgia as real, because there is no way to test for it aside from elimination of any other possible health issues that way cause symptoms.

This is not the case. From the research I’ve done, and from my own lived experience, it seems that fibromyalgia is the manifestation of a group of symptoms that have some sort of underlying cause-that cause is just usually unknown. Finally, only a few months ago, I found a doctor who is interested in looking outside of the box a little. He managed to figure out that all of my health problems (fibromyalgia, chronic fatigue syndrome, arthritis, neuropathy, hypoglycemia, hypothyroidism) are caused by mitochondrial disease. This literally explains every fibro symptom. There is a blood test for mitochondrial functioning that I highly recommend folks ask their doctors about. Mitochondria are some interesting little organelles that are responsible for A LOT!

Fibromyalgia is trauma-based.

There’s no concrete answer to what causes fibromyalgia, but after tons of research (books, internet, chatrooms and message boards, doctors, studies, reciprocal stories of lived experience) the common denominator appears to be trauma.

When you undergo some sort of physical trauma (ie: car accident, a fall) or emotional trauma (ie: abuse, death of a loved one) your body responds with the same chemicals to allow your body to go into “fight or flight” mode. Basically, if you are genetically predisposed to some sort of health problem that may trigger fibromyalgia and you undergo trauma (especially repeated trauma or multiple instances of trauma) your brain goes, “woah, dude. You’re asking me to make a lot of these chemicals, that can’t be right. I’m gonna make minimal amounts now instead”…so your body always thinks it’s going through trauma and does not release the same chemicals to deal with it as a person who doesn’t have fibro.

Get off drugs.

The medical care system’s response to fibromyalgia is drugs. Anti-depressants, benzos, opioids, opiates, nerve blockers and more.

Now, listen. Some people need drugs to live. Some people need drugs to increase their quality of lives. Some people need drugs because they do not want to make other changes to their lives, and drugs are an easy and effective way for them to live their lives. Above all else, I believe that everyone should have the choice to use drugs any way they please.

However, in my personal experience in treating my fibromyalgia, drugs have only ever made me sicker. Part of what mitochondria do is they filter out the crap from your cells so they can use good stuff to make energy. If your fibromyalgia is triggered by mitochondrial disease or disfunction like mine is, taking medication will just overload your body with toxins. If you are able to replace taking drugs with the lifestyle changes that will follow, I highly recommend doing so. Or at least giving it a try. do not intend to shame anyone who needs to or chooses to use drugs to treat fibromyalgia (or anything else), but it would be unfair to write this whole list about how to heal from/ learn to live with fibromyalgia without addressing one of the most important aspects of my journey with it.

Drugs also do not allow you to access the deepest levels of your consciousness, in my opinion and experience, which is vital to the mental and emotional health that is innately tied to your physical health and well-being.

Yes, this includes alcohol and other “street” drugs as well as pharmaceutical drugs.

Take care of your mental and emotional well-being.

We live in a world that is oppressive and induces a ton of trauma. I don’t think there are many, if any, folks who have no been traumatized in some way. Trauma is central to fibromyalgia. So, in radically healing yourself, it’s important to get to that root and work through the traumas you’ve experienced in your life. Guess what? You fucking deserve it. You deserve to feel good

Personally, I’ve done CBT, feminist narrative therapy, and energy therapy. They were all very helpful in different ways. If you can’t afford private therapy sessions, look into community support groups, or call your local mental health services and ask them what kind of options are out there that may work on a sliding scale or for free. They will often have resources to suggest. If you can’t find anything at all, consider forming a support group of your own.

Get together a solid support network.

You will need support while going through this process. It takes a huge toll, both physically and emotionally to live with this disease, and you should not have to go through it alone. Ask supportive people in your life (partners, parents, siblings, close friends, aunts, uncles, grandparents, centres for students with disabilities, therapists, professors, teachers, doctors) to support you in your management of your illness. Try to figure out specific ways they can physically and emotionally be there for you. They will need support as well, or they’ll get burnt out and you’ll both feel shitty. This is important.

Here’s an example of a few ways my partner supports me:

- we communicate about my energy levels using spoon theory
- he is supportive (though he doesn’t police) my lifestyle changes/eating habits
- he is mindful of my ability levels
- he attends doctor’s appointments with me
- he learned to release my trigger points

Maintain a solid bedtime.

Go to sleep and wake up at the same time every day. This is really hard. Especially if you’re in your early twenties, like I am. But seriously. It makes the biggest difference in pain and energy levels, as well as other symptoms like memory and concentration.

Diet and Nutrition.

Figure out what your food intolerances are, and stick to a very strict diet. This has been the single most important method of managing my illnesses.

Your intolerances may be different than mine, but I will share mine with you anyway, since they are all common to fibromyalgia.

Gluten. It increases inflammation in the body. Three days after going off gluten, I was off pain meds. Seriously. Plus it’s all GMO and gross and not really good for you anyway. You’ll feel so much better.

Nightshades. There jerks are full of alkalines, which apparently our bodies don’t usually like. Tomato, potato, zucchini, banana, peppers, eggplant. Don’t do it. Infammation sucks.

Sugar. Lots of people with fibro are hypoglycemic. When we eat sugar, especially processed sugar, our bodies are all, “WOAH I’M GONNA OCK SOME SUUUPER HIGH BLOOD SUGAR! OH WAIT, I CAN’T PROCESS THAT….OKAY CRAAAAAASH” and then life sucks. Cutting out sugar is REALLY FUCKING HARD because it’s in everything. As you can see, this has been a big deal for me because mmmm sugar. Coconut sugar is a great (though expensive) alternative that doesn’t affect glycemic index.

Things that are good for us: dark, leafy greens, iron, high protein, organic

Supplements and vitamins.

Vitamin D has made a HUGE difference in my pain levels, and has also really helped my depression and anxiety. Omega 3 and 6 help my pain a lot, as well as my energy. Iron makes a big difference in energy levels (if it makes you constipated, take it with magnesium).

Heat and water therapy.

Heat (ie: hot water bottles) are very helpful for sore muscles and cramps. Warm/hot water is even better. Find out if your city/town has a therapy pool with warm temperatures. Often they will also have wheel chair access and provide swimming belts, which are great for floating around of water-walking/running and take pressure off your joints and muscles. Don’t over-do it. Remember, the gentler the better. You don’t want to overexert yourself and cause a flare up.

Again, this is just what has worked for me. I feel so much better, and I’ve been off drugs (and living according to this plan) for nearly a year. I’m healthier, happier, and am proud of myself for committing to my level of ability rather than what is expected of me because of the ableist society I’m situated in. I still have a long ways to go in my healing, but I’m working towards it. Isn’t life a perpetual process??

I hope some people can find help in what I’ve written here. Thanks for reading~

Chronic Pain & Communication

slutrockerbitch — Tue, 21 May 2013 16:05:27 -0400

Chronic Pain & Communication:

blitheslife:

https://dl.dropboxusercontent.com/u/3511458/chronicpainpdfs/Communication.pdf

This is a 15 page document about chronic pain and communication. I have found it extremely useful, especially the sections containing techniques for dealing with critical people in your life. The document contains the following:

A Definition of Communication

A Model of Communication

Breakdowns in Communication

Styles of Communication

Information Communicated in Messages (instrumental vs affective)

Ways of Maintaining Communication

Invitations to talk (door openers)

Active Listening

I-messages

Communication & Chronic Pain Behavior

Effect of Pain on Communication

Effect of Communicating Pain Behavior

Assertive Inquiry

Broken Record

Fogging

Defusing

Content-To-Process Shift

Photo

slutrockerbitch — Tue, 21 May 2013 13:40:52 -0400

chronically-something: I have a severe lack of knowledge about...

slutrockerbitch — Fri, 03 May 2013 14:54:15 -0400

chronically-something:

I have a severe lack of knowledge about EDS and someone I care about has it. Spreading awareness and educating myself! Pass it on.

bendycute:

WHAT IS EHLERS-DANLOS SYNDROME? :

Ehlers-Danlos Syndrome (EDS) comes in six major types, each with varying symptoms. Generally, those with EDS have very hypermobile joints, which can partially and fully dislocate very easily. This is caused by a defect in our collagen and can be unbearably painful.

The defect in the collagen also causes a multitude of other problems in our bodies, after all, collagen is necessary for our skin, joints, muscles, ligaments, blood vessels and even our organs.

It is a lifelong condition that affects children through adults, and there is no cure at this point in time.

WHY DOES IT NEED AWARENESS? :

There is a SEVERE lack of knowledge and understanding, not just from family and friends, but from medical professionals too. A lot of us do not receive the proper tests and treatment we need. Not only can this be damaging to the mental health of the patient, but it can also put the lives of those who have not been diagnosed in serious danger.

PLEASE RE-BLOG FOR TO SPREAD AWARENESS AND SUPPORT ALL OF THE AMAZINGLY STRONG PEOPLE WHO HAVE TO LIVE WITH THIS CONDITION EVERY DAY.

curiouserandcuriouser-aiw: Another post from Sins Invalid Sins...

slutrockerbitch — Mon, 22 Apr 2013 16:04:24 -0400

curiouserandcuriouser-aiw:

Another post from Sins Invalid

Sins Invalid is a performance project that incubates and celebrates artists with disabilities, centralizing artists of color and queer and gender-variant artists as communities who have been historically marginalized.

I saw part of their show in Toronto and it was outstanding. Would love to see a whole show live.

Contains adult language and content .

Participants required for a study on asexuality and disability

slutrockerbitch — Tue, 09 Apr 2013 20:24:16 -0400

Participants required for a study on asexuality and disability:

avenpt:

Hi everyone,

My name is Karen and I’m a sociology postgraduate student at the University of Glasgow, Scotland. For my Masters dissertation, I am conducting research on the topic of asexuality and disability: specifically exploring the experiences of people who self-identify as asexual and have a disability, and looking at the ways in which asexuality and disability might ‘intersect’. I’m recruiting people to take part in an online (individual) interview with myself – and I was hoping that some of you might be interested in taking part!

I am interesting in hearing from folks all along the asexuality spectrum, and of all genders, relationship orientations, nationalities etc. I am also working with a broad definition of ‘disability’ – what is important is that you consider yourself to be a disabled person, or that you consider yourself to be disabled in some way.

It’s also really really important that you are over the age of 18!

If you think you might be interested, you can send me an email at 0705067c@student.gla.ac.uk and I’ll then send you a plain language information sheet which will give you a lot more details about the study (as well as my full name, contact details for my supervisor and University ethics committee). Once you have read that you can decide whether or not you want to take part. By contacting me you are in no way committing yourself to taking part - and if after reading the information sheet you decide that it is not for you, then that’s absolutely fine too! I’m also more than happy to address any questions or concerns that you might have about the research.

Thanks very much for reading this – and I hope to speak to some of you soon!

Best wishes,

Karen

slutrockerbitch: sore as fuck, but matching bra and underwear,...

slutrockerbitch — Mon, 01 Apr 2013 23:49:52 -0400

slutrockerbitch:

sore as fuck, but matching bra and underwear, anyone?

ZINE SUBMISSION CALL OUT: "A HOW TO GUIDE IN LOVING AND CARING FOR A MAD PERSON: an unapologetic and intersectional feminist tool kit in disability justice"

slutrockerbitch — Mon, 25 Mar 2013 20:49:35 -0400

tallesthellos:

(C IT, REBLOG IT!!)

HELLO tumblr world.

I am putting together a zine on people’s experience with mental health/illness/madness etc and how they / they were supported/loved/cared/lived with /for/by/ their partners/lovers/family members/ friends etc.

Want to participate? Please have photocopiable material submitted to jozay.25@gmail.com by the deadline MAY 1st - 2nd !!

Photo

slutrockerbitch — Mon, 18 Mar 2013 11:12:59 -0400

disabledpeoplearesexy: Kyla Harris in the photo series “Access...

slutrockerbitch — Thu, 14 Mar 2013 19:09:29 -0400

disabledpeoplearesexy:

Kyla Harris in the photo series “Access Sex” by Sarah Murray, more photos at the content source link.

holyhotpantsbatman: A preview of my photos. Photo by Alexandra...

slutrockerbitch — Thu, 14 Mar 2013 19:09:11 -0400

holyhotpantsbatman:

A preview of my photos.

Photo by Alexandra Borzo

intotophoto.com

IUD: A Possible Treatment for Endometriosis

slutrockerbitch — Thu, 14 Mar 2013 13:24:45 -0400

foryoursexualinformation:

A new article describes studies that were done on women* who were being affected by endometriosis. After surgery, some people chose the IUD and others chose no treatment. One study found that the persons with the IUD were experiencing 22% less cramping from their condition.

Here is the article.

count-vulvula: fionafix-it: CALL FOR SUBMISSIONS FOR A...

slutrockerbitch — Mon, 11 Mar 2013 17:33:06 -0400

count-vulvula:

fionafix-it:

CALL FOR SUBMISSIONS FOR A YET-TO-BE NAMED ZINE FOCUSING ON ACNE/SKIN/BODY POSITIVITY!

subtext: I can’t even name myself how the hell am I going to name a zine jeez

I’ve been having some recent conversations surrounding what body posi movements have accomplished and what they are lacking with folks I care for and one common experience that we brought up was a general lack of representation of what we/our parents/our culture bluntly refers to as “bad skin”; the logical step forward from this seemed to be “hell, let’s compile a zine about it”.

I think the content for this zine in both form and content should be open ended. Photographs, stories, poetry, collage, comics, quotes etc. are totally welcome. In the aforementioned bud talks, we generally agreed that our relationship with our skin was, well, complicated. So you are hardly required to frame your experience with yours in an entirely positive way to contribute. All in all, this project is shakily aiming at uncovering visceral and emotional feelings that we have been convinced to cover at one point or another.

send submissions, questions, and criticisms to fiona@silversprocket.net or ask me for a mailing address! & give this a reblog if you care to! <3

I should think of something to submit. Is there a deadline?

thelamedame: One Blogger’s Take on Sex and Migraines in the News thatmword: The media really...

slutrockerbitch — Mon, 11 Mar 2013 14:52:56 -0400

thelamedame:

One Blogger’s Take on Sex and Migraines in the News

thatmword:

The media really ran with the “story” this week that sex “cures” migraines. Friends and acquaintances were jokingly sending me the link and news outlets were shouting it as the great “cure” that has been eluding us all!

This bothered me for a few reasons.

1. It’s not a cure. There is no cure for migraines. I hate that word and I wish the media wasn’t so quick to throw it around.

2. I couldn’t find a media outlet that accurately interpreted the story. There was some science behind it but they didn’t indicate exactly what that science was.

3. There’s something really degrading about the way the media has reported this story. We have all struggled so much. I’ve personally been on so many medications, missed out on so many important life moments, left an entire career behind, and been hospitalized dozens of times. For the media to trivialize migraine disease by suggesting that women simply need to have sex more often, to me, further stigmatizes our disease.

I wanted to share the link in the title of this post with you because my friend Shelly wrote an eloquent post on this. I highly suggest you read it and share it.

What are your thoughts on sex and migraines in the news? How do you think the media has portrayed migraines?

I haven’t seen any news stories about sex as a migraine cure recently, but it’s made the rounds plenty of times in the past. And to be sure, there have been a few self reported studies done correlating the endorphin rush with migraine relief if experienced in the pro-drome period. But that’s anecdotal, unproven in a lab environment, and only found to be effective in less than 1/3 of migraine patients.

In summary, the observed association between relief of headache disorders and sexual activity in some patients is not clear enough to derive the advice of sexual intercourse as a therapeutic mean for every patient.

Most news stories about health are researched poorly and reported sloppily, and when I was much younger, this particular popular misconception (sex cures headache) led to a sexual assault. This wholes study is very gender reductive (men get migraines too) not to mention it reeks of “just lie back and think of england”

it may well be time to throw out the old cliché, “Not tonight, dear, I have a headache;” and give sexual activity a try the next time a Migraine or cluster attack strikes.

Not to mention it confuses Migraines with headaches - which are totally different things.

Also anecdotal, I can delay a migraine with orgasm - sometimes for a day or longer, but it’s not a prevention/treatment/cure. It’s a coping strategy. I’m not surprised it’s a common coping strategy. I could NEVER be sexually intimate with a partner during a migraine, and it’s kind of creepy that “Health Central” suggests I should.

disabledpeoplearesexy: Mary Duffy, Irish disabled painter and...

slutrockerbitch — Mon, 25 Feb 2013 18:03:26 -0500

disabledpeoplearesexy:

Mary Duffy, Irish disabled painter and performance artist

Sometimes I just have to post rad folks living with disabilities and rocking their shit on this blog

vanillaandlavender: Pain-Free Sex for Back Problems holisticsexualhealth: Back Problems? Liberate...

slutrockerbitch — Tue, 12 Feb 2013 22:06:30 -0500

vanillaandlavender:

Pain-Free Sex for Back Problems

holisticsexualhealth:

Back Problems?

Liberate your Spine for Pain-Free Sex

Tools and Tips to help you get pleasure without pain

There is no quick cure for the aches and pains as we get older, but there are ways to alleviate the pressure that can aggravate the pain and gain some semblance of control by using a few well placed tricks.

1. Bathe and Massage First
The muscles surrounding the back will work much better without tension. A warm bath and a massage can do wonders for preparing the back for sex. Try using sensual aromatherapy to get in the mood and soothe aching muscles and relieve tension. Products with rose oils can help relax and soothe your body.

2. Communication
Tell your partner what is working for you and what isn’t. Back pain is no reason to be embarrassed. On the flip side, don’t forget to speak up if you are the partner of the person with back pain, and you are feeling your needs are not being met — now that all of the focus is going on the person with the pain. Experiment with different positions together. Talk about what works and what doesn’t.

3. Don’t make Intercourse the Main Course
Focus on positions that don’t require much movement. Oral sex or mutual masturbation, which requires less participation from the back, can be the goal of the evening instead of intercourse. Spice oral sex up with flavored lube like Durex Cherry. Add to manual stimulation with a variety of temperatures, like ice cubes or heat packs. This can be a great time to enhance your repertoire.

4. Get Some Help
Look for vibrators and dildos that have long arms or are “hands-free.”
The hands-free vibes usually strap on. Wireless wearables make it even easier because once it is strapped to your body you don’t even have to move around a cord. Try the Wireless Micro-Butterfly.
Long armed vibrator Hitachi Magic Wand is an old favorite give strong vibrations AND can be maneuvered in many positions. Because of the weight and shape of this vibrator, it will stay put wherever you have placed it. The Hitachi will also work placed between partners for couple’s play. Also try the Flex-O-Pleaser.

5. Position Yourself Correctly
First, find positions where you can limit your movements.
Those with Extension type back pain often find that positions that arch the back slightly are preferable. On your back is the preferred position for many who prefer to penetrate with this type of back pain. A towel in the small of the back works well to well to support the subtle arch for them as their lover straddles them. Many who prefer to be penetrated also find that lying on the stomach, supporting their chest with a pillow while their partner enters from behind may alleviate the pressure.
Those with flexion type back pain often find positions with a forward bending motion are more comfortable. This would be missionary style with legs drawn up to the chest, or doggy style.
When on your back, bend your knees slightly. You might want to put a pillow or towel under your knees to give them support. The missionary position may be out of the question for people who penetrate with this type of pain, however. Some find entering their partner from behind, while they lean forward does the trick.
Nested Spoons (lying on your side, one lover in front of the other – stomach to back) can be tolerated by most back pain. Sensual yet still comfortable, the closeness of one tummy against the other’s back can encourage a connected feeling, it gives easy access to breasts and clitoris, and doesn’t cause excess pressure on either lover’s lumbar region.

Different shaped pillows can help you hold sex positions longer. Try wedge shaped or cylindrical pillows.

Another option is a Love Swing. The Love Swing is easy to hook up (on most door frames) and can hold up to 400 lbs. This contraption can ease you into the most awkward of poses.

disabledpeoplearesexy: This sex scene looks a bit fake to me...

slutrockerbitch — Mon, 11 Feb 2013 16:03:38 -0500

disabledpeoplearesexy:

This sex scene looks a bit fake to me but I like hir prosthetic.

Musings from a Queercrip Femme Man of Color by Edward Ndopu

slutrockerbitch — Sat, 02 Feb 2013 16:07:14 -0500

Musings from a Queercrip Femme Man of Color by Edward Ndopu:

boyprincessdiaries:

I feel compelled to make it known that I do not move through the world as sometimes black, sometimes disabled, sometimes queer, sometimes femme, sometimes male and sometimes Afropolitan. I move through the world embodying all of those identities at the same time, all of the time. We often make the mistake of thinking that an intersectional identity means a set of compartmentalized lived experiences joined together. An intersectional identity is one lived experience layered with the complexity of sociopolitical and cultural context. To borrow the words of Eli Clare, “gender reaches into disability; disability wraps around class; class strains against abuse; abuse snarls into sexuality; sexuality folds on top of race…everything finally piling onto a single human body.”

When people asked me how I identified prior to my understanding of what it means to embody an intersectional identity, I gave them a rehearsed, succinct response because I didn’t want to overwhelm them with the complexity of my lived experience. I would say: I was born in Namibia, but brought up in South Africa, now living in Canada, and that I use a wheelchair because I was diagnosed with Spinal Muscular Atrophy at the age of two. I usually left it at that, hoping I satisfied at least some of their curiosity. Now, I make it known that my personal narrative cannot and should not be summarized because I am intentionally complex. I do not subscribe to normative ways of being and knowing. And I do not even want to try. I dwell in the grace of my differences. Born to a South African freedom fighter mother who fled the Apartheid regime to Namibia and went into self-imposed exile, I grew up knowing that everything is political, including my existence.

My existence necessitates a re-imagining of ontological and epistemological understandings of time and space. I identify as femme partially because masculinity has given me nothing in terms of validation and self-actualization. Being a femme man allows me to perform masculinity outside of its heteropatriarchal gaze. People who are invested in hegemonic conceptions of gender may label my gender expression ‘effeminate.’ My gender expression is femme, not effeminate. The latter is an adjective couched in a web of patriarchal, cis normative, trans misogynistic assumptions. The former is a self-identification grounded in the divine feminine. I very much claim my masculinity, it just happens to be a feminine manifestation of masculinity. Notwithstanding the sociopolitical imposition of an inaccessible world and cultural paradigm, disabled femmes of all genders teach able bodied ness new ways of being beautiful in the world. We firmly belief that there is no shame in seeking glamour, power and magnificence if you have been labeled undesirable, useless and inconsequential; there’s no shame because those things already abide within the spirit, they’re yours for the seeking.

As a disabled femme, I deal with pain, rejection and solitude in ways that compel the people around me to redefine courage and tenacity. I reconfigure sexiness and sweetness and passion in the name of ugliness, tragedy and the promise of survival. Forget being inspirational, disabled femmes want to be everything. We want to move through the world on our own terms, guided by a bright flame of fabulousness. As I see it, we should all be allowed to simultaneously enjoy and problematize the myriad of ways we show up in sociocultural spaces. We neither have to give up the fabulous, nor put up with its shit. There’s space for complex shades of grey in our experiences, because we have been accorded with the inalienable agency to exist and embody that existence in sexy, dynamic, conventional and counter-hegemonic ways. Indeed, I’m relentless in my pursuit of the limelight. But, I’m more obsessed with embodying light. Since leaving South Africa, I’ve grown more and more comfortable identifying as an Afropolitan. As Taiye Selasie put it, “what most typifies the Afropolitan consciousness is the refusal to oversimplify; the effort to understand what is ailing in Africa alongside the desire to honour what is wonderful [and] unique. Rather than essentializing the geographical entity, we seek to comprehend the cultural complexity; to honor the intellectual and spiritual legacy; and to sustain our parents’ cultures.”

To negotiate my survival as a disabled queer femme Afropolitan, I break down what it means to survive into little pieces of grace, then take those little pieces of grace and reconstruct existence in a way that challenges the normative. Without difference, the universe would be less vulnerable, less revealing, less courageous.

Edward (Eddie) Ndopu is a black (dis) abled queer femme Afro-politan living in Ottawa, Ontario. Named by the Mail and Guardian Newspaper as one of their Top 200 Young South Africans, he is a social critic, anti-oppression practitioner, consultant, writer and scholar.

*This writer received an honorarium for this piece. If you want to support QTPOC being paid for their work, please consider making a donation to BGD!

Why I have fibromyalgia- (fibro folks, please read this- it may be helpful!!!!)

slutrockerbitch — Thu, 31 Jan 2013 11:12:14 -0500

slutrockerbitch:

super exciting health update~

One of my friends and her mom both have fibro, and found an amazing doctor who specializes in food allergies and sensitivities and is very interested in finding what actually causes fibromyalgia in individuals (because fibromyalgia is really just a way of doctors saying “we don’t know what is making you so sick, but we recognize you’re sick”) as well as using as few pharmaceuticals as possible. I went to my second appointment yesterday, and it was really amazing. After years of doctors telling me that whatever is actually making me sick isn’t in textbooks, I finally found one who was willing to take the time to think outside the box (aka pharmaceutical studies and textbooks) and figure out what’s going on. The first appointment he just asked a lot of questions and did a bunch of blood work, including ones no one has thought to run on me yet. The blood tests showed I have limited mitochondrial function.

Mitochondria are part of all animal and plant cells, and are in charge of energy production (synthesizing sugars to create energy our bodies can use), synthesizing hormones, and cellular respiration (synthesizing oxygen). Since my body is barely able to utilize oxygen, that’s why I get such severe muscular pain and inflammation and symptoms like that, because my cells take a lot longer to repair themselves.

Since my ability to synthesize hormones is impaired, this has caused hypothyroidism. This explains a lot, since every doctor I’ve gone to, from the time I first started having symptoms when I was like 11 has suspected that hypothyroidism is the underlying issue, but my thyroid tests both above and below what it should (it’s like a rollercoaster). This is because of the inflammation around my thyroid, which causes it to secrete large amounts of hormones at a time, and then it runs out and can’t release enough, which causes it to test weird.My inability to synthesize sugar has resulted in pretty severe hypoglycemia, which is another thing doctors have suspected for a long time, but been unable to explain or test for.

In other words- I have fibromyalgia because I have compromised mitochondrial function that has caused hypothyroidism and hypoglycemia. He gave me a probiotic that targets mitochondria and should help them function better, and I also have to give myself vitamin B injections twice a week. I also have to cut sugar and caffeine out of my diet, which will be really hard, but worth it. Explains why I can’t drink more than a sip of alcohol! I may need to go on thyroid medication and inject insulin as well, but he wants to try this first.

It’s really refreshing to have some answers that are based on diet changes and vitamins rather than just responding immediately with drugs. I hope it makes a big difference- it makes a lot of sense that it will. Oh- the blood tests that tested the functioning of my mitochondria aren’t covered by OHIP- I guess that’s why doctors haven’t previously bothered to run this…

I’m happy, but pretty overwhelmed, and a little skeptical, just because I’ve had to deal with so much bullshit from the medical system. Injecting myself doesn’t really bother me, but it will definitely be something to get used to. The diet change will be hard- but it’s not my first time cutting out shit that’s not good for my body, and I know how worth it it is. This is probably exactly what was behind my mom’s fibro. I wish she could have gotten more to the bottom of it too.

slutrockerbitch: radical-slut: Found out I can’t eat sugar...

slutrockerbitch — Wed, 30 Jan 2013 21:41:03 -0500

slutrockerbitch:

radical-slut:

Found out I can’t eat sugar anymore because it’s making me sicker. Also found out I get to stab myself with a needle bi-weekly if I wanna not feel like shit (totally worth it).

Basically, I’m not a real human. Just a sexy beast.

love,

Stacey O.

More detailed post coming soon to this blog. ‘Tis in the works!

Also to this blog!