Boss Up with Bevin Your dream life is at the end of your comfort zone

2009-04-15

Help Heal Fran for Leah’s Birthday!

My life looks like this: I plan an organize an event that takes literally hundreds of hours to put together, during lulls in the event I am surfing CraigsList on my phone’s tiny internet for apartments in Brooklyn. Because all of my stressors in my life are hitting a great glitter douche* of crazy all at once. I’ve seen 18 apartments in the last week and a half and haven’t found a good one yet. Mostly they are all recent renovations with no space and high rents that want me to be excited about stainless steel appliances. Seriously, all I want is some good counter space in the bathroom, closet space and a few windows. My future roommate agrees.

FemmeCast’s Femme Shark Correspondent Leah Lakshmi Piepzna-Samarasinha came out for a clandestine visit/gig for API month at Swarthmore last weekend and it was a welcome distraction from everything to hang out and do life planning and road tripping with her. She went looking for apartments with me and I caught a bit on tape. (I want to start a video blog but need to figure out how to get the video editing software I need for PC. Eventually.) So here’s a bit of that adventure, for your pleasure.

Also, since Leah’s birthday is next week, she is doing a fund drive for her friend Fran Varian, whose writing is amazing. I can give $20 as soon as my next unemployment check hits, but what I can’t offer in cash I can offer in spreading the word. So if you have $10 to give, please do. I’d love to see Leah meet a fund raising goal for her fierce friend for her birthday.

Hey all

Hope this email finds you well. I’m turning 34 next Tuesday, yay! And
while I am open to give am open to gifts of makeup or books or another
skirt
besides the two miniskirts I wear all the time (I am a size 12-14 in
the ass), what I’m writing to ask is if folks could make a donation
for my birthday
to my friend Frances Varian, who is struggling with late term Lyme
Disease and is literally fighting for her life as an uninsured
working-class queer femme writer and badass.

Some of you know Fran: for those who don’t, she is an awesome abortion
provider, queer femme working-class writer and (can I say it again)
badass. You may have seen her on stage at any number of gay-ass events
in the Bay over the last few years, and she’s a former Seattle
national slam team champion. You can see some of her work here:
http://www.franvarian.com/, and here:
http://www.hipmama.com/node/30311.

Fran has been really sick for the past four years. What started out as
fatigue, muscle weakness and getting sick at the drop of a hat only
recently got
diagnosed with late-stage Lyme Disease- and when I say only recently
diagnosed, I mean that Fran fought for two years in SF to get anyone
to look at her increasingly frightening symptoms. Fran originally
believed she had fibro, and we were some of each other’s first
disability buddies. However, my health got better and hers got worse,
to the point where she now is dealing with heart problems, constant
nausea, spasms and seizures and worse stuff. She was diagnosed,
finally, a year ago with Lyme, an autoimmune disorder that is
having critical effects on her health, and which is difficult to
treat, both because of the lateness when it is finally diagnosed and
because of a medical industry that dismisses many patients who have
it . Late stage Lyme works a lot like late stage syphyllis in terms of
symptoms- some folks go into dementia as the spirochites that cause
Lyme go into the brain. Others die of heart failure in their 30s as
they penetrate the heart.

Fran is literally fighting for her life, as an uninsured woman with a
disease that is misdiagnosed and dismissed throughout the medical
world. Her fight has made her move to Durham, NC to live with her
partner, because it’s cheaper than the Bay and she’s found doctors who
will help her- a choice that carries the cost of isolating her from
the community that loves her. She’s had a PICC line installed in her
arm since last fall, and is in the middle of an intense course of
intravenous anti-viral and bacterial treatment that her docs say is
her one shot of beating this. And, she’s paying for the whole damn
thing out of pocket.

What I really want for next year’s birthday is Fran healthy, able to
move back to the Bay ) and reading poetry next to me. What I really
want is for my friend to not be another story of a working-class queer
femme fireball who died a preventable death of an immune disease in
her 30s- like Heather McAllister, the amazing, beloved queer fat femme
icon, who died of ovarian cancer as an uninsured woman in her 30s two
years ago. As a chronically ill woman who knows that I have lived and
gotten better because of the support and love of my community, I am
reaching out to my community to help my friend.

Anything you can spare will go to help Fran and her partner Dante to
pay for her treatment. You can donate here:
http://www.helphealfran.org/
My goal is to raise $2,000 for Fran in the next two weeks, which will
enable her to pay for her next round of treatment.

Please donate on her website, but if you don’t mind dropping me a note (brownstargirl at gmail dot com)
letting me know how much you were able to give so I can track how much
is going to Fran, it would rock.

In love, lipgloss and revolution,
Leah

*Glitter douche is a word I just learned from Cherry Poppins. Used by Kings N Things in Austin, TX, it describes the act of anything that “is that crucial moment in a performance (often drag pieces) when you grab glitter and toss it out over the audience. The glitter could also, say, come from an object, such as an umbrella opening dramatically and showering glitter out over the stage. We also occasionally make use of ‘confetti douches’ or ‘rose petal douches.’ Regardless of the material used, a gender performance show wouldn’t be complete without douching of some sort.”

Here I am trying to picture all of the moving parts of my life as little pieces of glitter flying all over the place. Instead of a shit storm, which is sort of what it feels like.

2009-01-05

Medical Self-Advocacy for Queer Fat Femmes

There is so much to say about Queer Fat Femmes and medical self-advocacy. In honor of Lesbian Health Bloggy Such A Day or whatever (thanks to Sinclair for bringing it to my attention and for the gorgeous masthead up above my entries), I am going to relate a little story and some free advice.

In early 2007, right after the passing of one of my heroes, Heather MacAllister, from ovarian cancer, I had my Heather MacAllister Memorial Gyno Appointment. This is the missive sent out from her loved ones by her side at her death:

Heather’s last wish for you, what she wants for us all, is to love each other, and to love ourselves. To take care of our minds and bodies, without fail and against all odds. And to know, beyond doubt, that we are all beautiful, amazing beings. Never forget. This is what she lived for. Take care of yourselves, you beautiful beings.

I felt it was imperative to look after my health and to take steps to prevent the stuff I was able to prevent. Despite being covered by insurance for the duration of my twenties, I hadn’t seen a gyno since grad school, mostly because I was really lazy about finding one who I felt safe with.

I did some research and made an appointment. The doctor was fairly nice and the process was streamlined, but I was a bit taken aback that she started up with the fat stuff* immediately. In fact, this was a new tactic. “You are fat, I think you might have a wheat allergy and I am going to run a blood test.” And almost immediately blood was drawn and I said meekly Uh, can you also do a full STD screening? That’s why I’m here, too. You know, gyno health.

Two weeks later I got the dreaded phone call from the gyno office requiring me to come in for a follow-up (and another $50 co-pay). She looked at me gravely. “It says here you are allergic to wheat and corn. You need to stop eating those immediately and start losing weight. You might have a heart attack.” And she actually said to me, “You have such a pretty face, you’ll look so gorgeous if you lose weight.” I was in tears and thinking God, are you my mom circa 1994?

I demanded a copy of the results so that I could bring them to my fairly fat positive primary care physician and show to one of my besties, Kelli Dunham, stand-up comic and published nurse.

My PCP recommended I get a second opinion from a gastroenterologist. Since this was the American health system in the Hateful Bush Economy (TM), this all took place over the course of months, since it took forever to get appointments and cost me $50 a pop.

The gastroenterologist did an upper endoscopy, a colonoscopy and another full blood work-up. In the meantime, I gave up wheat and corn and later dairy. Seriously, it is extremely hard to eat without wheat or corn, as corn is in pretty much everything, especially gluten free stuff. I remember declaring to my besties When they tell me to give up bacon I’m just going to go for a diet of supplements.

To top it off, the last part of this eight month ordeal occurred while my fiance and I were breaking up. Imagine being told “Hey, I think we need to move apart for awhile on account of my intense depression” the day before you have to have a colonoscopy. I was wheeled into the operating room wracked with sobs because of the whole “emergency number” question.

But, the great news is that I am not allergic to wheat, corn or dairy! That gyno was a quack and I am totally glad I advocated for myself and got that second expensive opinion. And it turned out my gastroenterologist is in the same office suite as another gynocologist. While I was waiting for my many appointments, I read the complimentary cards from her clients and I decided to do my next year’s gyno screening with her.

I was really glad I did. I had to ask them to do a full STD screening and they seemed surprised–I was a 29 year old sexually active lesbian and they didn’t seem to jump right to the conclusion that it meant I should be screened.** Despite that, I still felt cared for and my weight was not an issue.

I published Episode 4 of FemmeCast about the concept of Health at Every Size, which really addresses fat people and the consequences of un-fat positive diagnoses. I’m sure we’ll come back to it again in future episodes.

Fat phobia from medical professionals can itself be a health hazard in that it inhibits fat people from seeking out routine and other medical care that they need.  All people, regardless of size, shape, age, race, class, gender, ability or sexual orientation deserve to be treated with dignity and respect in a health care setting and to have their health care needs addressed in ways that make them feel safe and comfortable and not attacked for who they are.

The day that I found out that the wheat and corn allergies were misdiagnosed, I had a tasting fleet of beers, a cupcake and really hot rebound sex. I think Heather would be proud.

*Typically this involves a medical professional saying “OMG YOU ARE FAT YOU ARE GOING TO DIE ONE DAY ON ACCOUNT OF YOUR FAT.” I will note that almost every doctor I have encountered who told me that said “Otherwise you are in perfect health.”
**Dude, always always ask your health providers to screen you, just to be safe.

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