exactly that

Posts tagged ‘AB/TAB’

Well, I guess the gloves are off…

funny pictures of cats with captions

Photo of grey tiger striped cat under wood grained coffee table holding green stuffed animal. Caption reads: mr binky dusnt liek you. me neethur.

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And, well, I really didn’t feel like spending the spoons on this.  I only get so many, and I didn’t think you were worth it when I have a family and appointments and my own shit to handle.  You, and others like you who can’t take time out of your fame to look at us, the lowly masses not worthy of you.  Not at all.  But see, you are not getting it.  You are like the school yard bullies who know that eventually we will run out of energy to fight this if you keep at it long enough because we are vulnerable.  I thought if I ignored you long enough…

You haven’t gotten it for a long ass time.  I haven’t bothered with your blog except when someone points me in your direction because of this.  You hurt, push off, dismiss and ignore people with legitimate complaints when they bring them to your attention, or allow your readers to do the same completely unchecked.  Then, you have the nerve when your responses to an open letter are made public to those of us who have a public interest in this.  Did you all think we would just go away with a little head pat and a promise that you would try to do better next time?  Oh poor you, you had no idea this was going on!  You are all so busy and your blog is So Big!

This shit isn’t new.

Fine.  Go have your biggest feminist community ever.  If it’s too big to have room for the rest of us so be it, because, ya know, you either have room for all of us or none of us.  We are not pieces who can co-opted for page hits, we are whole women and people, and we can not be appeased in back room secret meetings.  We are (eta: there should have been a “not” here, gah!) inspirational or brave or to be admired for our gumption.

But you had to go and piss off people that I care about and who matter to me.

The rest of the world treats us like shit scraped off of a shoe and we don’t need to read it from the likes of you, who pretend to be speaking up for marginalized voices.  Some of those voices happen to be ours.  But when this shit, this shit right here goes unchecked and not ONE FUCKING MOD has the nerve to step the fuck up…I mean fuck…someone from another fucking big blog cared more than you did.  And all this crap that you can’t be responsible for the comments of readers…BULLSHIT.  Completely and totally.  I have seen other places do it with zero tolerance policies, and yes, it was indeed fucking painful, and sure, they lost readers, but they made the effort and at least recognized that words mean things, and the spaces have become places where learning takes place without judgement.  The world is full of people out there catering to the same privileged ass holes who want to defend their right to behave however they want to with your blessing (because let’s be clear, your lack of action is pretty much condoning it).

It’s cool, though, b/c I knew the game a while ago, and so did a lot of us.  The WoC, the fatties, the lower class girls, ya know, the ones who can’t pitch a fit about having to eat day old over-priced take out sushi and having to actually get up by nine-fucking-thirty.  The ones who wrote about radical love first but didn’t get the by-line.  The ones you silenced w/ “tone” arguments (I thought that was a charming touch).  You chased a lot of people off before, and then used their ideas to further your big name, and that’s OK.  They didn’t need you.  I don’t, we don’t.  Wev.

We hoped that you would try to talk, to reason, to show that you stand behind your words.  But this shit has gone on long enough.  I cut my teeth at your place, and sure I fucked up, but the difference between you and me is that when I get called out I try to learn from it and move on.  I don’t stick my heels in the mud and demand my right to be a big ol’ jerk.  How many places have we opened up for a dialogue (not me, admittedly, I’ve been pissed at you for a while, but most of these people have been trying to contact you for about a year now)?  And your kids are still sitting on the playground, holding the dodge balls, screaming at us that we are too busy crying about our skinned knees while they all stand around insisting that words don’t mean things.

Words certainly do mean things.

So, consider these words:

Is what you are doing helping or hurting?  How many groups are you going to further marginalize?  Is being the biggest truly worth hurting so many?  You’ve lost sight of what you were doing and control of the community (or maybe you don’t care what happens in the community w/ your name attached to it?).  Is that your vision of making a new name for feminism?  If that is your vision of feminism I want no part of it.  None.

I stand by the others who have gone before me to list what they want.  Only complete and total cooperation from the entirety of the staff will suffice to get my participation and to get me to listen.  I will not negotiate.  Not with my life, not with my well being or that of other PWDs.  I don’t have enough spoons for that.

Don’t know what spoons are?  I’m not looking it up for you, because I can’t stomach another flippant response without vomiting.

I intend to join in solidarity, literally or figuratively as needed with other PWD and FWD to ensure that we work harder at creating spaces where we are respected and treated with dignity and respect and like whole people, not someone to be tolerated or pitied.  We are to be taken seriously.  Most of us are not just simply “disability defenders” as some of your faithful readers so cleverly put it, we are actual PWDs who are very capable of speaking up for ourselves.  But that would require someone actually paying attention.

Don’t worry.  I won’t hold my breath.


Same story…different day…

and different patient.

This could be a page out of my memoir:

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

Only, it was back in Hawai’i, and my regular doctor had been deployed suddenly.  When I went to TRICARE to request a new doctor I was told specifically, by the TRICARE rep, to request a Medical Officer (an O-5 or above) to manage my care, which I did. Then I was told by central appointments when I tried to schedule my initial appointment with the new PCM that Medical Officers were only seen on referral from general practitioners.

Cue the three ring circus.

When I arrived, in pain, and barely able to drive myself, I was force to wait, on a cold, stainless steel examination table with not even a crappy pillow for over an hour while the Chief on call read my record, because he said I was exhibiting all the signs of a drug seeker:  allergic to aspirin and several other routine migraine medications, tylenol wouldn’t work and I couldn’t take toredol because it was akin to aspirin.  Sure, I had used midrin, but it never helped.  And that was just for the headaches, but I was also having unbearable body pain…which was all in my record…and I was here for a vicodin script.

I had been out for about two weeks because of the unforeseen deployment of my old doctor.  Oh, also, GPs don’t hand out Vic scripts to first time patients.  Best I could hope for was a referral to a Medical Officer (really?, cuz, like, he’s not my PCM or anything!) and a script for 800mg Ibuprofen.  Guess how much good that does my pain?  I can swallow a whole bottle of those puppies and it won’t do me any good.

Chronic pain creates obstacles.  Obstacles in your life, physically and socially, and it is literally one of those “you had to be there” things.  A chronic pain patient already more than likely is having hir life criticized by those who used to call themselves hir friends.  People in our lives will think they know better than us how to manage our lives will want to stand back and wag their fingers thinking that all those pills we are popping are for fun or making us useless drones.  Crappy doctors with patronizing tones will make us scared to seek help to the point where we will literally suffer rather than make ourselves vulnerable.

But occasionally we find the good doctor, the one who gets us on the right track, and helps us see that we are doing it right.  Who helps us through the hoops.  The health care professional that talks us through the rainbow of pills and reassures us that we are not weak because we need the pain killers, or reminds us that they could give us a little bit of our lives back.  The partner or friend who takes the time to drive us to appointments or hold us up on the subway or help sort the pills into dosage boxes or smooth our hair when the pain is too much to bear…

Any glitch in that care, any hiccup in the process, though, causes problems of apocalyptic proportions, creating more work…not for our doctors and not for the clusterfuctastrophe of a rat race in quick sand we call our health care system…but for us, the PWD who are just trying to hold on the the high wire act that keeps our lives functioning.  So that we can have jobs and do silly things like shower and hug our kids and feed our cats we suck up the energy we are already lacking and crawl through the hoops.  We drag our tired asses around and play the game and write the letters and get the labs and pay the last dollars…because we have to.  We have to because even though the system and the world is ready to forget us and willing to not see us we are insistent in our desire to exist.  We are audacious in our temerity to take up space in the world of able bodied people and drag ourselves over those hurdles in spite of the condescension of everyone around us who insists that we just have to remain calm and everything will work out OK.

Fuck calm.

These are our lives.

And that is worth expending a little energy.

Where I jump in and defend pills…

DSCN4456When discussions arise of disability, especially, it seems, of invisible disabilities, someone will almost always jump in and start harping about Big Pharma and how they have certainly invented our illness or disorder just to sell us or get us hooked on some new fancy drug.  Or, they will insist that we are just addicts who refuse to find ways to manage our pain.

And for some of us it is a type of shaming that is hard to get out of our heads.  For me, personally, I have let not just that, but some people actually convince me that pills were so bad that sometimes I convince myself that I can manage my life without them.  It usually takes a significant event (which I will leave out of this little anecdote b/c someone that I know reads this blog thinks these things are his business, but I assure you, they are not) to remind me and make me realize that I not only need them, but that it is in my, and my family’s best interest for me to use them.

I saw a doctor recently who took the time to have a real conversation with me about my health, my Fibro and my care.  It was incredible and refreshing.  She gently insisted and reminded me that I need to take some medications, and together we decided that, yes, some of them don’t hinder me, but actually give me parts of my life back.  That while addiction and dependency are different things, real concerns, and things to consider, they are things that we need to weigh against the benefits of taking medications.  She took the time to discuss side effects, interactions, whether I would need to take multi-vitamins, that I would need to watch my calcium intake (to avoid getting stones), and discussed lifestyle changes that I have either already made or would need to make to improve my quality of life, and that of my family’s.  This is the kind of thing that needs to happen between pain patients, chronic illness patients, and pretty much any patient who needs to take medications and their doctors.

So, now there are pills.  Seven of them.  Only two daily use, and the rest to be used “as needed”, which is something I rather like.  The Lyrica and the Topamax are gimmies, because I actually get some benefit out of them.  They improve my quality of life in a general manner.  Those are the the red and white one and the tiny yellowish one next to it (the jelly beans in the picture were my idea of a funny…HA!  C WUT I DID THERE?).  Lyrica helps me not want to throw myself out the window* (which would be a feat w/ the window protectors on our sliding door-sized windows).  In other words, it means mobility and movement, once I have adjusted to the side effects.  Yes, it takes a while to adjust, but it is worth it.  The Topamax, and anti-convulsant, is given to me off-label for the constant Not Migraines that I have (24/7 for almost 5 years now).  It dulls the daily pain, and sometimes gives me mostly headache free days, which liberates me to do silly things, like stand up.  It also has side effects, such as a metallic taste in my mouth.  But I know this, so I expect it, and the benefits outweigh the gains, and eventually they fade.  For now, I switch to plastic cutlery and all is well with the world. (more…)

Obligatory NIIAW Post*…

Shamelessly stolen from Annaham

I agree, also, w/ her sentiment…Awareness isn’t enough.  Take that w/ as much salt as you need to digest. (more…)

The Invisible Disability

emo16Because of the new movie that is out I am currently re-reading Jodi Piccoult’s My Sister’s Keeper.  I read it about five years ago, but I read that the screenwriter for the movie changed the ending (why do we do these things, Hollywood?  The movie ending sounds awful, but more on that after I see it), so I thought I would brush up so that my memory is fresh when I see the movie.

There is one character in the book, Campbell Alexander, who is a lawyer to agrees to take Anna’s (the central protagonist) case for medical emancipation from her parents, pro bono.  Alexander has a service dog that assists him.  The need for the dog becomes something of a running joke throughout the book, because everyone assumes that if he has a service dog he must be blind, which he is not.  He cracks a series of jokes, including “I have an iron lung, and the dog keeps away from magnets” to avoid directly answering any questions.  It isn’t until the end of the book that you find out why he actually needs the dog (but re-reading this I find that there are many fairly blatant clues to the acute reader), and no I will not tell you, just in case it happens to be omitted from the movie. I am a jerk like that.  =)  While Campbell Alexander’s situation provides a good many of moments to laugh in a book that is incredibly tear jerking, his situation is all too familiar. (more…)

5 docs, 3 years, 2 psychs, 1 day in the life of…

Moderatrix’ note:  I wrote this on 16 November, 2008.  For some reason I thought I had written it here and I did not.  I am sharing it now, because I want to show how disability and medical care intersect with Military and Veteran’s issues.  Something I want to bring attention to is just how difficult it is to get continuity of care as a Veteran, and the challenges involved in getting disability from the Military or the VA.  If I had a way to work in the system to improve it I would take the opportunity.  For now, I will work on bringing awareness to the topic.

Thursday I met w/ a new Primary Care Manager.

This is my fifth official PCM in about three years. I have also had several other general practitioners b/c each of those PCMs was either retiring, deployed, or otherwise unable to treat me. The most I have seen any of them is about five times. I have also in that same amount of time been seen by two Psychologists, one Psychiatrist (b/c it’s all in my head, yo!), a Chiropractor/Kinesiologist, a Physical Therapist, two Neurologists, a Rheumatologist, and a Dietitian (b/c if only I wasn’t a big fatty I would feel better!).

I have been on Vicodin, Oxycodone, and at least three other narcotics over the last three years, no less than five sleeping medications, two allergy meds (for inexplicable rashes), three different anti-depressants, two anti-convulsants, any analgesic that is available, and five medications that hadn’t been available for more than a month.

I have been over medicated, under medicated, drugged out of my mind to the point where taking all of the pills in my cupboard sounded like a good idea (but I didn’t, I flushed them and got help instead), tried herbal remedies, vitamins, supplements, diets, and countless other suggestions. I have tried hypnotherapy, electroshock therapy, heat therapy, cold therapy, and physical therapy.


A call to activism in Australia

From Lauredhel of Hoyden About Town comes this notice of intended changes to the criteria for using handicapped spaces:

The government is proposing a national harmonisation of disabled parking schemes. Sounds great on the surface, doesn’t it? But they’re going to throw independent people with disabilities (PWD) who aren’t wheelchair or scooter users to the wolves. People who can walk without physical assistance from another person, with or without a cane, no matter how restricted their walking distance, will no longer have access to accessible parking.

There is more information on the Hoyden’s site about who to contact and how if you are in Australia.  This new criteria can completely limit the access of some people currently living w/ invisible illnesses who are not always, but could sometimes be, limited by the limits of their own disabilities.  Helping PwDs shouldn’t be about restricting access, but about making sure that the world is accessible for all people, regardless of whether or not they need physical assistance all the time or require the use of a wheel chair all the time.  Please note that the need for a walking stick (a cane) or having your walking distances limited will not grant you access.  People who can barely get around independently will have their lives completely restricted if this access is taken away.

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