Tag Archives: vulvodynia

Recommended Reading for December 14, 2010

K__ at Feminists with FSD: Notes on MTV’s True Life: I Can’t Have Sex

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

Carol at Aspieadvocate: I’m an Embarrassment

Yeah, I know some parents of autistic kids worry about the kids embarrassing the rest of the family in public with their unusual behavior. But for me it’s the other way around. I never shut up about autism, mine or his, and while I have every right to out myself, I’m making decisions about him that should really be his to make. Except even if he’s made different decisions about disclosure than I have, he’s not (yet) verbal enough to tell anyone.

David Gorksi at Science-Based Medicine: Death by “alternative” medicine: Who’s to blame? [trigger warning]

Of course, the implication of “Secret” thinking is that, if you don’t get what you want, it’s your fault, an idea that also resonates with so much “alternative” medicine, where a frequent excuse for failure is that the patient either didn’t follow the regimen closely enough or didn’t want it badly enough. Basically, The Secret is what inspired Kim Tinkham to eschew all conventional therapy for her breast cancer and pursue “alternative” therapies, which is what she has done since 2007. Before I discuss her case in more detail, I’m going to cut to the chase, though.

This weekend, I learned that Kim Tinkham’s cancer has recurred and that she is dying.

Arwyn at Raising My Boychick: How far I’ve come

Eight years ago I was withdrawing from college. Again. I’d started medication, divalproex sodium, and that was going to cure me; we’d packed up our possessions, bought furniture in flat boxes, and drove it most of the way across the country to this town with one redeeming feature: the college from which I had just withdrawn because it was better than flunking out from chronic absences. I did not know who I was, what good I was, if I could not do college, be a student. I could not see a future, and mostly did not believe I had one.

Linsay at Autist’s Corner: Autism-related gene spotlight: CNTNAP2

EXECUTIVE SUMMARY: CNTNAP2 is a large gene near the end of chromosome 7 that encodes a cell-adhesion protein involved in distributing ion channels along axons (the long tails of nerve cells) and in attaching the fatty cells making up the myelin sheath to the surface of the axon. DIsruptions in this gene have been associated with autism, epilepsy, Tourette syndrome and other neurodevelopmental disorders. Variations at certain points within the gene that don’t alter or disrupt its expression have also been associated with an increased likelihood of autism.

Recommended Reading for December 7

Disability & Poverty

People with disabilities, the report says, account for a larger share of those experiencing poverty than people in all other minority, ethnic and racial groups combined and are even a larger group than single parents.

The extra costs associated with living with a disability such as purchasing expensive equipment like wheelchairs and catheters or obtaining specialized medical attention keep many disabled people and their families in poverty, the report notes.

Autism Speaks Hits A New Low

Before I explain what they’ve done to make me say that, I have to provide a bit of background information. You see, back in early August, Autism Speaks sent out this press release encouraging people to submit videos of autistic individuals for use in an upcoming film project. This project had huge names behind it— most notably, award-winning movie director Alfonso Cuarón, the man behind both Children of Men and the third Harry Potter movie— and was to be titled “I Am Autism.” According to Autism Speaks co-founder Suzanne Wright, this project was intended to “shine a bright spotlight on autism,” and was to be unveiled at the United Nations World focus on Autism on September 22.

Seems pretty harmless, right? “I Am Autism.” Sounds like it might be some sort of “We Are The World”-type production, about how we’re all affected by autism in some way. And “shining a bright spotlight”? I actually had a small gleam of hope that Autism Speaks was finally shedding their doom-and-gloom message for something more positive.


Diagnosis of a Faun

Determined outsider triumphs over mainstream medical, using a disabled artist as her protege/experiment. If not dance as therapy, the therapeutic effects of dance. Those are the storylines here; not Mr. Mozgala or even the piece itself — which, btw, I hope to see in June if not in December. So, here, we go.

Mozgala does not gain much space in the article except as a medical project with a weird gait: his CP has “caused him to walk for most of his life like ‘a human velociraptor,’ as he put it: up on his toes, lower extremities turned in, seesawing from side to side to maintain balance.” In fact, we don’t hear much about his acting career; he’s more of a specimen. Once, we’ve got the details of an enslaving CP out the way; the whole thing starts out with an outside: a choreographer who has done with with nontraditional dancers (my phrase) — the article’s author, Neil Genzlinger says “outside normal dance parameters. She sees Mozgala and is “inspired.” Yeah. That thing.

My Experiences with Vulvodynia

On the other hand, I found the medicalisation of my sex life difficult to deal with – in the end, I was dreading trying to have sex, and tried to only do so the weekend before an appointment because I knew that a doctor was about to ask how it was. I dread to think what the reaction would have been if I had admitted to seeking treatment for this condition while single; there was no opening for the possibility of non-straightness or non-monogamy. It wasn’t until I saw the final doctor, a sex counsellor, that anyone asked whether my relationship was good; even then, the focus was on returning me to a fit state to have penetrative sex and babies. (When I finally took a deep breath and said, “I don’t think I want to go on with this, I have no motivation to cause myself pain every day,” the counsellor replied that other women often went through with it because they were trying to have children. Fair play to them, but she didn’t ask whether I wanted children.)

In the news:
Ambulance Unable to find place for suicidal girl

A mentally ill, suicidal teenager was ferried around for hours by an ambulance crew because no NHS unit would accept her, the BBC has learnt .

The girl eventually had to be taken to a police cell, documents revealed under the Freedom of Information Act show.