Category Archives: etc

13 Fibromyalgia Moments

naturalhabitat

In my natural habitat.

  1. I slept in until 10:30 this morning, but am ready to go to bed right now. It’s just after 9:00 PM. This feels like a failure, somehow.
  1. Wikipedia defines fibromyalgia as “a medical condition characterized by chronic widespread pain and a heightened pain response to pressure. Other symptoms include feeling tired to a degree that normal activities are affected, sleep problems, and troubles with memory. Some people also report restless legs syndromebowel or bladder problemsnumbness and tingling, and sensitivity to noise, lights or temperature.” Fibromyalgia does not sound so bad, defined this way. Any person with the condition, however, will tell you that it is much worse than this definition makes it sound.
  1. Something a lot of people do not understand about chronic pain is that it is constant. I am always in some kind of pain. Some days, my pain level is a 1 or a 2 (those are great days); some days, it’s an 8 or a 9 (usually because of rain, or because I did too much, exercised too much, or overcommitted myself the day before). Most of the time, my pain level is between a 4 and a 6. The rock band Hole titled their 1997 compilation album My Body, the Hand Grenade. My body is a land mine that can detonate internally—touch it the wrong way, and it will explode with symptoms.
  1. Even the number scale doesn’t really cover the symptoms that I deal with on a daily basis: pain (it usually feels like I’m wearing an overcoat of bricks), fatigue that feels like I’ve taken at least 4 Benadryl pills, and very strange symptom trinkets like nausea and dizziness, the skin on my face getting extremely hot, and/or feeling like the soles of my feet have been lit on fire. There are more weird symptoms, but listing them could be an entire piece in itself.
  1. The pain itself can take certain forms other than the aforementioned overcoat of bricks: burning, biting, pin-and-needling, scratching, dull aching, shredding, or, my least favorite, pulling. Pulling pain feels as if my bones and muscles are being pulled toward the ground, like gravity decided to weigh on just me a whole fucking ton.

Most of the time, my muscles are as tight as closed fists; this gives new meaning to the phrase tight body.

  1. When the less-common shredding variety of pain occurs, all I can think is, This would be what pulled pork would feel like if it were able to feel.
  1. When I was first diagnosed with fibromyalgia, in 2007, I thought that the name of my new disorder sounded like the name of a gross fish that swims along the bottom of the ocean and eats dead things. That, or the name of a character from George R.R. Martin’s A Song of Ice and Fire series: Lady Fibromyalgia of House Musculoskeletal. Unfortunately for me, it was, and is, neither.
  1. A close relative asked me during a phone conversation, “When you say you don’t have the energy to get out of bed, what do you mean?” I didn’t know how to make the language of that statement any more plain.

I mean that I do not have the energy to get out of bed, I replied.

  1. There have been times when I have attempted to read—to distract myself from my symptoms—and the words look like they’re starting to march off the page. This is one of my indicators of level 8-plus pain or severe nausea.
  1. I have a lot of guilt about not being able to do certain things, especially if social activities with family or friends are involved. Are they thinking If she would just [______], she could make it to the party/art opening/camping weekend?

My partner is quick to reassure me that family and friends would much rather see me when I am feeling well, and that it’s important for me to take care of myself. Despite my frequent worry about this topic, his reminders help. But the expectations that “nice” women are up for anything, are cheery, social, ever helpful, able to go to parties and events, look pretty at all times, be charming and friendly and talkative and make other people comfortable by not showing that they’re upset, annoyed, in a funk, or (in my case) in pain at all–still haunt me.

  1. I cannot remember what it is like to not be in pain. Even being at a level 1 or a 2—usually thanks to medication—seems strange to me. Being in at a low level of pain always feels like I am in another body, like I’ve borrowed someone else’s body for a little bit.
  1. If I had to choose a superpower, I would want to be able to projectile vomit rotten sauerkraut onto people who say that fibromyalgia does not exist, that there is no “physical evidence” for it, that it’s a women’s disease, so we must be making shit up.

The central idea in this attitude, as with the skepticism surrounding chronic fatigue syndrome, chronic Lyme disease, and more—is that women who have any of these “mysterious” diseases must be exaggerating their symptoms for attention, embellishing descriptions of their daily pain to get drugs, or dumb enough to have been convinced by drug ads on TV or news articles or WebMD that they have these “made up” diseases. There’s a pervasive cultural idea that men’s pain should be taken seriously—if a man is in enough pain to visit a doctor, he must be in real pain. The other side of this coin is that women’s pain should not be taken seriously—a woman in pain who’s concerned enough to visit a doctor for treatment might be just hysterical or anxious.

  1. Every single thing that I do is affected by pain, and I have to live my life accordingly.

To people who do not have chronic pain, this sounds like I have given up. To me, it sounds like common sense.

 

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Yule gift guide, part 3: Things to Read

Today’s (VERY LATE) gift guide installment features books, glorious books! Not all of these were released in 2012, but they are all worth a look for your bibliophile giftees–or for yourself, if in the new year you’ve found that you need stuff to read.

Above: Selections from the following list.

Above: Selections from the following list.

Inside Scientology: The Story of America’s Most Secretive Religion by Janet Reitman: I read this huge honker in a couple of sittings. Yes, it’s that interesting. Good for anyone who loves non-fiction, is not a Scientologist, and/or is thinking of majoring in Religious Studies.

A Thousand Lives by Julia Scheeres: More religion! Except this time, the subject is Jonestown. Journalist Julia Scheeres gets past all of the “OMG drinking the Kool-Aid” sensationalism surrounding the group’s mass murder/suicide, and in the process uncovers a fascinating story of people searching for meaning and peace–a search which ultimately led them to extremely dark places.

Sex & Disability, edited by Robert McRuer and Anna Mollow: I reviewed this one for Bitch over the summer, but the quality of this volume is so good that I have no problem recommending at the drop of a hat (or drawers, really). Good for people who are into cultural studies, queer theory and studies, and/or (of course!) disability theory.

In the Peanut Gallery With Mystery Science Theater 3000, edited by Robert G. Weiner and Shelley E. Barba: Yes, it’s an academic anthology on MST3K. No, it’s not boring or tedious at all. This is a good one for media studies junkies, and/or people who have managed to sit through the very early KTMA episodes of the show.

Let’s Pretend This Never Happened by Jenny Lawson: This was one of the funniest books that I read in 2012. The weird cover featuring a little taxidermied mouse dressed in a period costume is just the beginning–if you want to read anecdotes featuring a bathtub full of baby racoons, young Jenny accidentally running into a fresh animal carcass, and awkwardness at a weekend bloggers’ meetup, this is the book for you.

Lost at Sea: The Jon Ronson Mysteries by Jon Ronson: Probably my favorite book of 2012, and certainly one of the most impeccably reported. This volume of British journalist Ronson’s collects many of his strangest and most compelling pieces, among them an interview with Insane Clown Posse (which can also be read herecontent warning for graphic descriptions of violence), a report from a week-long cruise for fans of infamously brusque psychic Sylvia Browne, and an amazing investigation of predatory credit card companies in the UK. The balance of “serious” journalism here with Ronson’s more humorous pieces is excellent, and I highly recommend Lost at Sea if you are a fan of British humor, investigative reporting, or nonfiction writing.

Non-Stop Inertia by Ivor Southwood: Those of you who are underemployed, or who are currently experiencing the purgatory of a stream of low-paid temp jobs, are sure to find much of what Southwood says about labor, capitalism, and the exploitation of young workers familiar–and, most likely, spot-on. I know I did!

All of Us or None: Social Justice Posters of the San Francisco Bay Area by Lincoln Cushing: A beautifully designed art(istic) history of the Bay Area’s famous (or infamous) reputation as a hotbed for anti-oppression movements does not disappoint. The posters included here are not just presented coffee table book-style, however–the text that describes each poster and its significance is enlightening, informative, and interesting to read. Anyone who says that history is “boring” should take a look at this book.

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Yule gift guide 2012, part 2: Cosmetics & Beauty/Health items

This is going to be a long post, because I am one of those makeup/beauty nerds who loves going “YOU MUST TRY THIS!!11” to people who have asked for my recommendations (or, in the case of this post, people who have not asked). Anyway, get a beverage ready and get comfortable, because there are a lot of things in this post. Gifts listed here will be a little more expensive than in the last installment, although I have tried to keep things that I think are overpriced (heyo, Dior Addict Ultra Gloss lip gloss) out of this guide.

SOAP AND BATH STUFF

soap_substratum
My latest soap obsession is the limited edition Substratum soap ($9) from Black Phoenix Trading Post, which is the “other merchandise” arm of BPAL). I know, right–NINE DOLLARS for a bar of soap?! But it is a WONDERFUL bar of soap. Notes: Himalayan cedar, patchouli, spikenard, and black fig. I’ve already written about BPAL in other contexts, but I will mention that their current limited edition scents are worth checking out if any of your gift-ees are into that sort of thing.

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Yule Gift Guide 2012, part 1: Accessories

I am one of those people who loves finding great gifts for people, especially around the holidays. The massive “You MUST buy (expensive) things to show people how much you LOOOOOOOOVE THEM” commercial push around Thanksgiving and Christmas annoys the living crap out of me–particularly the pervasive idea that you have to spend a lot of money in order to buy thoughtful, interesting gifts for people. With the economy the way it is, dealing with these attitudes (which seem like they are on display EVERYWHERE–thank you, free market!) can be especially hard for people who are unemployed, underemployed, or whose employment is in some state of flux (shout-out to my fellow temp workers).

This year, I have decided to do a gift guide mostly designed for those who are on a limited budget. Of course, if you do not have a budget, you can still give gifts (Design Sponge has some great ideas in this post); for those of us who aren’t crafty, or whose crafting skills are limited, smaller gifts may be a good compromise.

People who hate shopping–or who say things like “The person for whom I am shopping [HAS EVERYTHING/is hard to shop for!]”–might find that this helps. I have YEARS of experience with hating shopping, and for finding gifts for people with discerning and/or bizarre tastes.

I’m dividing these up into categories; today’s installment focuses on accessories under $20 (not including shipping), and future installments will focus on music, books and DVDs, things you can wear, beauty/personal care items, things you can eat or drink, and (possibly) big-ticket items from all of these categories that are over $50 (in case your budget is less limited). I hope that you’ll be able to find something for a person on your gift list–or something for yourself. In any case: LET ME HELP YOU. First up: accessories!

pillcase

Do you know someone who takes pills? If so, this pill box featuring two dapper cats ($8) from Etsy seller che655 will make a great gift. I recently purchased this very Dickensian Yorkie pill case and love it.
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5 Things People Need to Stop Saying About Unemployment

I have a confession to make: I am one of the millions of people in this country who has struggled to find work, particularly in the past year. I have a Master’s degree that I obtained fairly recently, but like many people I am still stuck in the weird “qualified but unqualified” limbo that seems to be common amongst a number of job seekers in the U.S. I do have a part-time contract job that pays pretty well and that I enjoy, but I am still far from my goal of “finding a paying job with benefits that isn’t going to make me collapse in an exhausted heap at the end of the day, thereby making my health problems worse.” This may seem like a highly specific goal, and it is, but I have my reasons for it, mostly having to do with disability-related things (with which many readers of my blog will be familiar!). If that shakes up your image of entitled and whiny Gen-Y kids who just don’t understand that life isn’t fair, you may want to read on.

I know putting this on a public blog is risky, more so because there are employers out there who do things like specify that the unemployed need not apply to their open positions (WTF?). I am also, however inadvertently, inviting internet tough folks to clog up my comments section with “well-meaning” crap nuggets of advice about how I am Doing It Wrong with regards to looking for employment. I probably won’t publish those comments, though–not because I am “against free speech,” but because I have had EVERY THOUGHT you could possibly throw at me about those exact topics. Really.

So, in no particular order, here are five things that people need to stop saying about unemployment and/or to unemployed and underemployed people. Because seriously, it is getting old.

“Well, I was unemployed once, and I got through it.” [May come with a barrage of unsolicited advice on How to Find a Job that would have worked 15-20 years ago.]  I notice that this one is commonly used by Baby Boomers who may or may not just want people who can’t find jobs–particularly young people–to shut up. The youth unemployment rate in this country is incredibly high, and although I don’t want to be all MY GENERATION HAS IT THE WORST–because goodness knows that older people have to deal with ageism on the job market in a particularly insidious way, regardless of how much career experience they have–this piece of advice rings quite hollow after a while. We know you’re only trying to help us during a difficult time, but here’s how you could actually help us Gen-Xers and Millennials out: Know when to stop talking, or stop typing if you just need to comment on an article online.

And if we resist your “advice,” it’s not because we’re being rude or obstinate for no reason, or because we hate you. It’s because many of us have more than enough to deal with right now. Maybe we don’t want to think about how much it sucks to be un(der)employed right now, because we think about that all the time. Maybe we already spend untold hours on cover letters, targeted resumes, networking, and all of the things that we’re supposed to do in order to get a job. Many of us are doing all of these things (and more!) as it is. Empathy: Try it sometime!

“Maybe you shouldn’t have gotten a degree in Women’s Studies/English/Art History, then!” Sure, let me queue up my time machine, go back eight years to my first term of undergrad, and pick a STEM major! Never mind that I would be terrible at one of those. I had the audacity–as do many people–to pick a field that I was, and am, actually pretty good at, and that I enjoyed. I EVEN GOT A MASTER’S DEGREE IN IT, so clearly I am just a waste of space because of my stupid, useless degree.

Had I been a STEM major in college, I probably would have caused something like this to happen–which would have given me an entirely different set of problems.

I know people love to rain down the hate on Humanities majors for their lack of “practicality” for what the market demands, and my guess is that people in the so-called “soft sciences” such as Psychology and Sociology get a lot of this as well. And sometimes there are other obstacles to going into STEM fields, as this wonderful comment at Ask a Manager details. I would add that while you’re busy prattling away in comments fields about your amazing Electrical Engineering degree, we’re the ones who are doing some pretty important things that you don’t see. Who do you think writes that snappy content for your company’s website? Who do you think edits your memos, corrects the grammar and spelling of your scientific papers, or turns your vague and already-kinda-been-there ideas about web 2.0 into viable social media plans? If it weren’t for “creative” types in the arts and humanities (from a variety of majors), where the hell do you think all of your entertainment would come from?

Poster for the 2012 film "The Avengers"

The guy who wrote and directed this total flop got a “useless” degree in Film.

Where do you think media criticism comes from? Journalism, opinion pieces, magazines on a huge variety of topics (including tech, business and science)? Blog posts that you pretend not to read at work? Books? And yes, weird academic papers that almost no one reads, like my B.A. thesis on the Heaven’s Gate cult? (That last one may weaken my argument a bit, but still.) I can hear the cries of indignation now: ZOMG HOW COULD YOU HAVE WRITTEN SOMETHING SO USELESS? Here’s how: I know how to put sentences together and shape a bunch of those sentences into paragraphs that expand upon a substantial and cohesive argument, keep momentum going throughout long-term projects (even when the end seems as faraway as a spaceship containing friendly aliens that will welcome your earthly soul to their peaceful home planet after a short ride through the galaxy), and read, summarize and analyze a variety of materials from different forms of media critically. Useless.

“Just think POSITIVE!” Okay, Captain the-Sun-Shines-Out-of-Our-Behinds. Perennial awesome person/journalist Barbara Ehrenreich wrote an entire book about this trend, and as I covered in my review of Bright Sided, she is much better at building an argument against “positive thinking” than I am, because I tend to get super wordy when this topic comes up. Because it is that goddamned infuriating, particularly when applied to a HUGE PROBLEM like mass unemployment that is closely intertwined with structural failures. With the positive thinking crowd, we see the mistake of depicting individual actions as the determining factor of whether someone will succeed or fail, even though that is not really how it works. If “just trying” positive thinking and affirmations alone could get me a job, I would have SO MANY JOBS, because I have tried it and the job of my dreams did not exactly appear from the heavens fully-formed.

“You can’t go get a job at McDonald’s/in retail? You must think you’re too good for those kinds of jobs.” Not exactly; there are so many people who need work right now that even temping, retail and yes, McDonald’s are not magical employment panaceas–there was, for example, that widely-reported story about old Mickey D’s receiving one million job applications for 62,000 job openings. Take a moment and think about those odds for a bit.

As for being “too good” for certain jobs: If, say, Sephora offered me a job tomorrow, I would probably take it because I need a job and am interested in makeup (and yes, I have applied to work there). It’s not that I think I’m too good for those kinds of gigs; it’s basic math, because a whole heck of a lot of people need work right now. Also, there is a little thing called being “overqualified,” which pretty much means that Sephora might not want a sales associate with a Master’s degree, much less a Master’s in Women’s and Gender Studies. Admittedly, the notion of a Women’s Studies nerd selling cosmetics and beauty products is pretty hilarious, but that seems a bit more suited for Alan Ball’s next black comedy series than for real life.

“You need to try harder to find any job that will take you.” Certainly, there are some good tips out there that job-seekers can follow to improve their candidacy for some positions (I quite like Ask a Manager’s many posts on searching for jobs). However, the continued emphasis on individual actions in the face of some pretty intense structural odds is extremely troubling, particularly because capitalism is a system that is designed to give a lot of privileges, legs-up and such to a relative few, while the rest of us are stuck being told that we need to think positive, try harder, and generally keep running on the rat wheel until our hard work rewards us, too–often while facing stagnant wages, non-existent health benefits, and/or unpaid internships cleverly marketed as “work experience” that will supposedly look great on your resume.

Those of us who can’t find work, or enough work, are always to blame somehow: too little education, too much education in a “useless” field, too little time devoted to networking and volunteering, too little pressure on ourselves to look positive, confident and not bitter to employers even in the face of seemingly endless rejection; we have the wrong outfit, wrong resume, wrong cover letter, wrong work experience, wrong attitude.

And once you get a paying job, there is zero guarantee that it will pay a living wage; recent statistics, furthermore, point to the chilling fact that less than half of all jobs in the U.S. currently pay over $35,000 per year. How ’bout that “invisible hand of the market” holding people down instead of taking care of everything, like some said it would? Whee, capitalism! Unfortunately, the response in comments sections all around the internet is usually something to the effect of “Who gives a shit about poor people, right…they should take responsibility and get off welfare! The wealth of the top 10% will trickle down, because Reganomics works! I’m not [middle/lower/working] class, so I don’t need to care about them.” often with a piping-hot side of “OMG ILLEGALS ARE TAKING OUR JOBBBBBBBS.”

Mitt Romney giving the thumbs-up.

In the time it took me to write the above paragraph, Mitt Romney most likely made more money than I will ever see in my lifetime. GOD BLESS AMERICA.

Being unemployed/underemployed sucks, and you most likely know someone who is in that situation. For the love of Cthulhu, please re-think what you say to your friends, relatives, and fellow internet denizens who are going through this. If it happens to you—and I hope it does not—you will be glad that you stopped saying jerky things and generally acting like an ass to people who really don’t deserve it.

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This is what I have been doing since my last update

Here is a quick sketch of me buried beneath a pile of job applications. Fun!

I have some other cartoons on similar topics that I am eager to post, so I’ll get those uploaded soon.

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