equality

Innovation and “The Bleeding Edge”

Posted on by akiwifreund

There’s a documentary that’s been added to the Netflix library that I think everyone should watch called “The Bleeding Edge.” Overall, the topic is supposed to be about medical devices. But talk about intersectionality! Unfortunately, I think that women are going to be drawn to this movie more than men – because we are experimented on and dismissed much more than men and the movie makes it much more evident.

Every once in a while, we get to see a little snippet of a CEO standing on a stage proclaiming the audience of marketers and/or health care professionals “innovators” or “disruptors.” I really struggle with these labels. I see them thrown around often. What do they mean, exactly?

Nothing has really changed drastically here in the U.S. with the delivery of healthcare. We are still beholden to insurance in the traditional sense, and pharmaceutical companies, hospitals and medical device companies drive pricing, which is all over the place; nothing is uniform. Right now, only those with expendable income can stray from the model. Delving a little deeper, not every state is set up for people who are at or slightly above poverty; instead, the state laws are designed to punish them for lack of income and lack of healthcare, while simultaneously penalizing them for not taking better care of their health.

“The Bleeding Edge” covers such medical implants as hip replacement systems and the Essure coils, which are discussed in detail. I can relate to this topic on a few levels. First, all ten of the shunts that I had implanted between July 2011 and May 2015 failed. I went to a hydrocephalus conference in 2016 and was able to attend a panel with all of the major device manufacturers, and got the mic for a question. I detailed issues with scar tissue growing into the programmable part of the shunt which made the dial get stuck wide open, causing excruciating pain (and if any of you reading this have had a leak, imagine the symptoms for a year where you feel like you are being beaten by a tire iron every time you raise your head). The manufacturers insisted this was “impossible.” I told them they couldn’t say that to my face, because I was living proof, and one of their reps was in the exam room with me to witness it.

Any time, and I mean any time a device company says something isn’t possible right out of the gate, you know something is up. As outlined in “The Bleeding Edge,” women who had Essure implanted were only reported on for the first 12 months – and even for those women, their answers were altered so the outcomes were positive. As far as my shunts go, I didn’t know before my first surgery that all shunts have a 40% failure rate within the first year. I still haven’t seen that published anywhere. I wouldn’t have known that if I hadn’t attended the bi-yearly hydrocephalus conference in 2016 and heard it from one researcher (and only one researcher).

My second connection is that I actually seriously considered the Essure implant. A friend had them implanted in her Fallopian tubes and seemed to suffer few side effects. I wanted to stop taking birth control pills but didn’t want other hormones, and thought maybe the coils would be a viable permanent solution. I actually developed tumors in my uterus and had to have a hysterectomy, otherwise I may have completed that process. I’m breathing a sigh of relief that I didn’t after seeing this film. I didn’t realize the scope and breadth of complications – but more importantly, now that I know I overproduce scar tissue internally because of MCAS, I could have been in terrible trouble (besides what is happening now). I don’t know what I would do if I had to deal with that in addition to the scar tissue I already have growing around my intestines.

Another alarming process pointed out in the film is that devices are grandfathered in simply because they are similar to other devices that have been created. It doesn’t matter if the previous devices were defective. It only matters that the devices existed.

There are many moments in the film that made my blood pressure go up immediately. For instance, some fat ass doctor watching protesters who received the Essure implants say that they made up their complications. He is misogyny personified. And when a rep whose identity is disguised tells a story about a doctor who admits that the rep’s product is superior but he doesn’t get enough financial incentives so he’s going to promote a competitor’s product, I’m tempted to throat punch someone. Or how about when the filmmakers point out the different companies the former heads of FDA went to work for after they were done in the public sector so they could help get the products passed through the FDA for bigger profits with no thought to safety or effectiveness?

What would true innovation or disruption be? Let’s disrupt misogyny. Let’s disrupt hiring from the public sector into the private sector and vice versa so we can eliminate cronyism and sole emphasis on huge profit margins and replace those with successful medical devices and prescriptions. Let’s build a truthful healthcare system and test products before they are put into our bodies. (Don’t say it can’t be done. Other countries already do it.) Let’s build a healthcare system that is not based on employment or lack of employment. Let’s call it something other than “innovation” and “disruption.”

If Nothing Else, There Is Hope

Posted on by akiwifreund

Written as a MySpace blog post 10.5 years ago, approximately 3 years before I became seriously ill with the disease that took me down and now has me bedridden. I can’t believe it’s been a decade already.

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The Legacy of Hope   6/2/07

 

When I went to the Chandler library to cruise for movies to check out for the weekend, the selections were pretty slim.  The Poirot series that usually appears on PBS didn’t hold any appeal, and “Show Boat” wasn’t looking any better.  I picked up a documentary called “Legacy,” about a multi-generational family of single moms trying to escape the inner city projects of Chicago.

The narration is provided by one of the teenage girls who lives with her grandmother, mother, aunt, six cousins and four siblings.  Within the first 10 minutes of the film and after the grandmother gives her first interview about living in the projects, one of the nephews – the one that showed the most academic promise and stability, and was looked up to by family and neighbors alike – was shot dead in the street.  The filmmaker chose to follow this family for a total of five years after this devastating murder, which included the boy’s mother joining and completing her 5th addiction treatment program, the narrator’s mother getting a stable job after being a welfare recipient since the age of 16, and the grandmother finally qualifying for her own house after a generous donation from an area businessman who saw the news story of the boy being shot.  The narrator was the first in her family to complete a high school education and receive her diploma.

This was a difficult story on many levels.  It is not dissimilar to watching episodes of “Intervention” on A&E.  Nearly every person of my immediate and extended family is or was an addict; I saw and learned things that no child should.  Every person in my father’s family with the exception of my uncle died young, including my father.  This month will also mark the violent death 12 years ago [as of 2007] of my aunt at the hands of her boyfriend.

Poverty was also a strong factor in my childhood years.  My mother nearly died when I was five after she contracted a bacterial infection, and was bedridden for three months.  Add that to the strain of my own medical bills, with my terrible asthma attacks, allergies, and numerous bouts of pneumonia and bronchitis….and no health insurance.  “Preventative care” was impossible to consider.  We stood in line for milk and cheese.  We were also issued these awful frozen fish portions, which were breaded fillets of cod with a hunk of cheese wrapped in as well.  Luckily an uncle was a manager at General Mills and would give us test samples of various foods that they were developing to mass market.  It was a treat when we once got “Bonkers” – if you remember those, they were rolls of peanut butter with rice crispies and chocolate chips on the outside.  Mostly, though, we got these horrendous breakfast bars – vanilla, strawberry, and chocolate – that had the taste of chalk and the consistency of a doorstop.  We ate them because we had to.  [It is no mystery that impoverished people are overweight because the least expensive food is the most fattening and unhealthiest fare you can conjure up.]

One Christmas there was no money for presents.  My mom contacted a local charity that gave us $14 each to spend on gifts, took us shopping, and had a wrapping party afterwards.  Mom still had a sense of humor about it – somehow she convinced me to tell her what I got her, saying “Oh, I’ll forget, I promise.  Just whisper it in my ear.”  Of course I told her.

It is also no mystery that being poor is stressful, humiliating and limiting. It is easy to say “Why don’t they just ___________ ?”.  Right now, as a nation in general, we have a very them-vs.-us mentality; every man for himself. If you are lucky enough to have grown up in a household that never really had to struggle to survive, it is much more difficult for you to understand how this cycle of poverty continues through generations.  But instead of saying “Why don’t they ________?”, why don’t you ___________ to help?  Because it’s their problem, not yours.  I’m not saying that we have to give $10 to the people with signs at the end of freeway exit ramps.  Can’t we lend a hand before it gets to that point?  It may not be you or your family right now, but it could be in the future.  Medical expenses alone are becoming outrageous, even for those covered under company policies, and one major illness could be financially devastating.  Half of all bankruptcies filed are attributed to medical bills.  For some reason, we as a society have associated medical bills with outright laziness, when it couldn’t be further from the truth.

There were elements in this film that I could not relate to.  My extended family never bonded to get through the hard times.  When my aunt was killed, my father had to admit to the detectives that he “never really socialized with her” and didn’t know her boyfriend was violent.  Her death was heartbreaking, but instead of offering each other support, fights broke out over stupid things like who would get her dresser and bed.

These women in the documentary also had strong faith in God, which was never a part of my upbringing.  Hearing “God will get us through this” and “by the grace of God” was like they were speaking in tongues to me.  Faith is not something I practice.  Even if we’re talking about people in general, or work, or good health, or anything for that matter, I never sit back and say “I have faith”.  Instead, I have hard work and critical thinking skills.  If I don’t do for myself, I have no business sitting back and waiting for something, or someone, to take care of everything for me. 

Yet, there is still the legacy of hope.  We need to be reminded that despite our circumstances, we can rise above with dignity and flourish.  You or I may have been in a bad place 10, 20, 25 years ago, but that doesn’t mean we have to be there now.  Good deeds should be handed out to strangers, friends and family alike – you may need their help one day.

My mom has recently started worrying that she made too many mistakes and bad decisions when raising my sister and I.  It’s quite a time delay, since we are both in our mid-thirties and turned out pretty straight.  I don’t hold anything against her.  She also taught us love and affection, dignity, and the joy of survival. 

The Tender Trap Of The Gender Gap

Posted on by akiwifreund

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…”

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,

but

not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

A Really Adult Post About Male Sexuality

Posted on by akiwifreund

A friend posted this article on Facebook. Many years ago I had wanted to be a sex educator, so reading anything that has to do with sexuality in the clinical or psychological setting is fascinating to me. A friend pointed out that it’s an article that is probably aimed towards women who want to find out more about the penis. Maybe, but then again, maybe not. I think that women have to steer men in the direction of talking about these things, or at least feeling safer about talking about these things, just as this author did.

There are a couple of things that stood out to me. First, there are not many opportunities to examine a transgender penis, much less talk about one. They are often portrayed in television shows as grotesque, malformed masses only briefly glimpsed during bloody surgeries, never as final products. This article (and this picture) allows me time to actually look for as long as I want to and marvel at how far this type of surgery has come. I mean, really, genius! Go for the big penis! When I was facing my hysterectomy, I had jokingly asked my OB/GYN to make my vagina slightly longer because the big penises were posing a real problem. She laughed, of course.

Second, I had a partner with a micropenis. And neither of us handled it very well. I was in my 20s and had just moved to Arizona. He was quite handsome and we got on very well, but it all fell apart when we had sex. B. felt ashamed and inadequate, so he overcompensated to the extreme. He would demand that I would tell him he was “filling me up” when in fact the condom couldn’t even stay on. Fully erect, he was about the size of my thumb. B. was frenzied in his thrusting and when it was all over claimed it was the best he had ever had. I was just dazed. In the days after, I told him that I didn’t think that we were a good match. He kept asking why. I couldn’t bring myself to say it. But it wasn’t a relationship first and then sex, it was sex first, and I was just not equipped to bring him through the minefield. Of course I’m hoping that he found someone to love.

Third, I wish more men would quit porn. I mean it. The violence, the fake body parts, the fake orgasms, the fake positions, only being able to orgasm by jerking off fast and hard? It makes for a shitty sex life. And it’s not because I’m not doing enough to keep men interested. If you’re bored, then you’re boring.

Without further ado, here is the article: Me and My Penis: 100 Men Reveal All

Fake It ‘Til You Make It Out Of There Alive

Posted on by akiwifreund

A few minutes ago I was standing in the middle of my kitchen, trying to figure out if the married couple downstairs was fighting again, and whether I should reach for my phone. Last Saturday the husband, whom I have nicknamed The Leprechaun because he’s shorter than my 5’6″ height and sports a red beard, had a 3-hour meltdown. One of many, I’d like to point out. He rages. He hits the wall. He hits furniture. He may even hit his wife. I hear her crying all the time.

I notified the apartment managers the week they moved in, and they told me to call the cops. On Saturday, I did. I got tired of the screaming and my walls shaking. The cops came and went, and The Leprechaun took it upon himself to immediately knock on my door afterwards and demand that I talk to him about why it’s acceptable for him to be abusive. You see, he has a traumatic brain injury. You see, he can’t drive. You see, it’s none of my business if he makes his wife cry. I didn’t open my door. I simply put my headphones back in and eventually he went away.

I drafted a letter to the apartment managers. In it, I recapped what happened in the past, including The Leprechaun knocking on my door right before New Year’s because I had dropped a bottle of lotion on the floor, because it had “caused a huge ruckus” (like that’s the same as 15 hours of his screaming rage) – and by the way, I hadn’t opened my door to him that time either. I also indicated that he had knocked on my door and demanded we talk after the cops had left on Saturday. I was told that the managers were going to have a meeting with him as well as talk to their attorneys to find out how to handle him because he had a disability (traumatic brain injury from serving in the Navy) and they have to “accommodate” him – though I’m not sure why his TBI overrides my disabilities. Also, let’s face it: no one has ever called the cops on me for being violent and threatening, because I’m not.

I got a text from one of the managers Wednesday night that they were setting up a meeting with him Thursday morning. Fifteen minutes later, The Leprechaun knocked on my door again and demanded that I open the door and talk to him. I told him through the door that I wasn’t dressed to open the door (which was the truth – I was resting in bed), and he said very forcefully, “I’LL WAIT.” Then I said that I was also on the phone (which was true – I was talking to someone out of state, and that friend could hear the entire exchange). Eventually The Leprechaun went away again, but I had to text the manager and tell him what happened, and he told me to call the cops if The Leprechaun came back.

I know the meeting happened on Thursday morning. I heard The Leprechaun return back to the apartment because he slammed the door as hard as he could. I didn’t hear him start packing boxes though, so I have no idea what the verdict was. Looks like I’ll have to pursue that answer Monday.

But it seems silly that I had to point out to the apartment managers in my letter to them that I don’t condone spousal abuse, I am not okay with him retaliating against me, I’m not his wife, he doesn’t pay my rent, and it doesn’t say anywhere in my lease that I’m required to accept abuse from the tenant who lives in the basement apartment. So now I’m on alert and ready to call the cops. C’mon, Leprechaun, your box of Lucky Charms is gonna run out sooner or later.

This ties into another subject that I was discussing with a friend about why women fake orgasms. Specifically, why do women who are having a one-night stand fake orgasms. Mainly because there’s so many douchebags like The Leprechaun running around. The worst are the ones who like to proclaim that they’re nice. No really, they’re nice! But then get any of your bits naked around them and they’ll make your nipples bleed or tell you that you like anal sex, you just don’t know it, and they’re going to show you how right they are.

I actually had the privilege of talking this process of faking it through with a man who was willing to listen rather than becoming defensive or angry. Think about it; when you talk about having one night stands as a single woman, you get the pious lecture about how you don’t deserve anything nice because you gave a man your body for only one night, you dirty whore. No lecture for the other party, though. He did nothing worse than stick his dick in another hole. But I digress.

We talked about the various reasons why women fake orgasms. But there’s a specific reason that isn’t talked about much that comes up from time to time on first dates/first-time or only-time sexual encounters, and that is personal safety. Sometimes you don’t know that things are going to go badly until you are both naked and the fucker has stopped listening, and it dawns on you that he simply wants a porno show. His script is running and you had better perform. The light bulb goes on over your head.

Of course, some men love the whole resistance and crying thing. That’s not what I’m talking about. The guys who can’t tell if a woman is faking are the ones who rely solely on porn for the cues of orgasm: “Oh” sounds, clenched hands, clamped jaw (or maybe even gaping open, whatever your preference). They want to dig a hole to China through your clit. If you complain that the pressure hurts, they push your hands away, tell you that you should stop being shy or that you really like it, and wrench your legs back open after they have closed to protect your most tender flesh. Same for anything that they want to do to you rather than do with you.

The light goes on. You give him his show, make all the right noises, tell him he is king, and get the fuck out of there before he rips your skin any more or gives you additional bruises and you have excruciating pain every time you pee because the urine is passing over open wounds.

I’m just saying, it’s okay to fake it sometimes. There’s a lot of Leprechauns out there.

Medical Sexism and Trump Grabbing My Girl Parts

Posted on by akiwifreund

I pride myself on being a college-educated woman. The education came at a steep price. The student loans will likely haunt me long past my death; I only finished two years ago, and I was even handing in projects while I was in the ICU recovering from my many surgeries.

My education is not strictly located in books, though. I have traveled through 36 states and 7 countries in 20 years, and moved across the U.S. 4 times. As my friend pointed out on Friday night, I seem to be able to talk to people wherever I go (I didn’t realize anyone noticed!). Sometimes I hang back and observe, and there is a lot to be learned by listening and watching body language.

I have never liked Donald Trump. I was never attracted to his slicked-back hair and definitely would not have recognized him if I stumbled across him in the 1980’s or ’90’s when his star was rising, and I couldn’t stomach his show for even one hour when “The Apprentice” started airing. I didn’t understand the appeal of him being put in front of a camera for being extra nasty. I never bought into the idea that it was being played up for entertainment; I actually thought that he was even worse than what we were seeing.

Now here we are and somehow he has slipped past all of the 14 other candidates for president and it’s the last few weeks before the big election. Here in Minnesota we’re allowed to vote early by absentee ballot, so rather than join the crush on voting day, I made arrangements to go to the county office at a time I knew it would be much quieter. It took me about a half hour to fill in all of the boxes manually for all of the different options. We had state representatives and judges that needed votes as well as the president and vice president. Luckily Minnesota is still using paper ballots – so many states tried to go electronic and the glitches resulted in votes disappearing forever, and Republicans winning votes where they might not have.

In case you haven’t guessed yet, I didn’t vote for Trump. I happen to be a few things he hates: a disabled, fat, bald woman who will never compete in beauty pageants or for his attention. But here’s a more comprehensive list of why having him as president would pretty much guarantee that 99% of us would be dead by February 2017 (or there would be a coup, but that would require people getting off of their asses and abandoning their cats).

I attended a school in a very rural area of Minnesota for five grade levels before I moved back to Minneapolis to finish school. Some of those classmates are now friends with me on Facebook – or at least “friends” as Facebook defines us. But we have led very different lives. As much as I have ventured out on my own since the age of 16, the majority of them have stayed very close to home, married very young (some even fellow classmates), had children, and some have already started working on grandchildren, even though our age range is only 41-43. Collectively and in general, they are afraid of anyone who isn’t white and Catholic; Lutheran is marginally okay, even though those fuckers don’t kneel. You’re fucked if you’re Jewish in that area. There’s been a mighty wave of Muslim Somalians of course, and the white folks are scared shitless. Trump seems like a white-orange god because he makes them feel secure – walls! Muslim registry! Deny entry to any more Muslims! All Mexicans are bad (except for tacos)! Um…money! (Shhhh, don’t say anything about the fucking bankruptcies. He was smart for dodging taxes, you’re just jealous because you’re not as smart as he is.) And the creme de la creme: GRAB WOMEN BY THE PUSSY! He sure tells it like it is!

Well, let me tell it like it is.

First, let me drop in a little truth bomb. I had my genes analyzed through 23 & Me just to get the raw data because of all of this rare disease business and to see if they could pick up anything identifiable, and something that came up on my mitochondrial DNA (mom’s DNA) is that I’m Yemeni Jewish. That’s right, fuckers, I’m Jewish. Yemeni Jews happen to be the oldest lineage of Jews, desert dwellers who often converted to Catholicism in order to avoid being put to death, which is likely what happened with our family somewhere along the line – we’ve got bishops and nuns. Jews who converted to Catholicism became self-haters publicly to save their lives. I’m a survivor.

Second, I feel like we are moving backwards in time. Trump is just a very obvious sign of it. Here we are in 2016 and a swimmer gets 3 months in jail for raping an unconscious woman in a back alley because a judge feels sorry for his potential swimming career; young men are deciding that as a reaction to women trying to get equal rights and pay to men, there needs to be a movement called “menenism” where their “grievances” need to be aired (and though it was started as satire, I’ve been personally targeted numerous times on Twitter by guys with the “menenist” agenda – mostly ending with “shut up bitch what have you done nothing,” so of course I’m mentally correcting the punctuation); and now females aren’t going into medicine in equal numbers to men.

When I was debating the Trump vs. Hillary vote with these former classmates and they were telling me why they thought Trump was still “better”, and here was the list that one of the debaters came up with:
Instead, I suggest folks vote based on simple, concrete (non-emotional) things like
1. Who will keep us safer?
2. Who will keep the government out of my health and education choices?
3. Who is LESS LIKELY to be swayed by bureaucracy?
3.5. Who is least likely to fu*k up our economy further?
4. Who hasn’t been linked to several national security leaks?
5. Who hasn’t been linked to voter fraud?
6. Who hasn’t been linked to multiple nefarious deaths to those opposed to or threatening to them?
7. Who HAS BEEN?

This was my response:
Okay, I’ve gotta jump in on this, because I’m a little worried about just where the “facts” are coming from. First of all, we have a pretty solid idea of how Trump is going to treat certain issues.
1. Trump is going to be just as challenged with geography and world events as Palin is.
2. Trump needs to stay away from my vagina and needs a thesaurus because he only knows the word “tremendous” – so do you really think he needs to be in charge of determining how education is either built up or broken down?
3. Trump is easily swayed by anatomy, money, perceived power, hair spray and dementia (his own). 3.5. Are you guys really okay with the number of times he has declared bankruptcy and denied payment to all of his contractors, big and small?
4. He leaks what’s going on through his brain (i.e.: “I don’t pay taxes because I’m ‘smart'”) – pretty sure he shouldn’t be trusted with nuclear bomb codes.
5. He doesn’t have a voter fraud record because he has never had an office that he has been voted into; he has bought all of his offices. And then filed bankruptcy. Multiple times.
6. Multiple nefarious deaths….well, that comes with the territory of being American, doesn’t it? We’re all bullies. We don’t take time to listen or understand or practice any diplomacy.
7. Silly question that is more like a bumper sticker and carries no meaning.

Then one person asked how I felt about “all” of our health care providers supporting Trump?

I’m going to let the “all” slide because I don’t think that’s the case, but I am personally struggling with getting adequate care, and I truly think it’s because we have a boys’ club that is going strong still. Right now the breakdown is about 70% male and 30% female doctors, and I really do feel like my female primary care doctor isn’t confident she can stand up to the male specialists who misdiagnose me. Because she can’t, it really, really fucks me over. It fucks over my case with the undiagnosed diseases with the NIH, and it fucks over my case with disability.

I’ve been struggling with the right way to put this into words, and it’s a little more complicated. I have a deep mistrust for doctors at this point in my life. I expect them to let me down. Last week when I had my appointment to follow up on the testing for the mast cell disease, I barely slept three hours the night before and fully expected to be sent away, just like hundreds of other times. So right now, if I even have the slightest hint that someone worships Trump and his hatred for women besides as sexual vessels, I instantly get anxiety. I can’t trust that doctor to write objective notes in my file and I can’t trust that doctor in my personal space. This is not unfounded.

But the truth is that most doctors won’t talk politics freely. I just have to trust my instincts and  read the doctor’s body language and figure out if he’s an asshole the old-fashioned way.

Pay The Toll To The Troll. The Price? Your Soul.

Posted on by akiwifreund

I don’t have any idea how often this happens, or who determines it, but supposedly, Mercury was in retrograde as of Thursday this week. Why don’t frogs just rain down from the skies and we can all just be done with it? No, the psychic attack is much more stealthy, I think. The back of my neck aches. My gums and mouth burns and everything tastes metallic. I fervently wish that Facebook incorporated a disgusted eye roll emoji in their current six options, up from the original singular thumbs-up option. My inner dialog changes: Get out of my way. Stop kicking my goddamn cane. Your perfume smells like cat piss. I’m not waiting 45 minutes this time before calling in to see if they forgot me again, I’m only waiting 30. I am going to scrub my fucking toilet until it fucking sparkles.

Even before Thursday hit I could feel the earth boiling, and my mood was cooking right along with it. I encountered my first troll on Tuesday night. A friend created a private Facebook group so that (mostly) she and the rest of us could say things that couldn’t be said unfiltered in front of a wider Facebook audience. The creator also uses the page to talk about her new grandchild, so obviously it’s not as restrictive as she originally intended. Anyway, a mutual friend was going through a rough patch with her boyfriend and had already talked about it at a coffee shop reunion the week prior, so when she posted in the group, she was just looking for further confirmation that she wasn’t being too harsh in her judgment; after all, when you are the one in the situation, it’s difficult to be objective. This jackass dude pipes in and starts criticizing her and tells her that she’s probably not communicating correctly or enough with the guy she’s in the relationship with – not at all helpful.

Knowing what I know of my friend, and knowing what I know of the guy she’s dating, I don’t hold back on the troll. First I tell him that she DOES and HAS communicated clearly what her boundaries are and that they have been violated repeatedly. Every point the poster or I bring up, the troll says we’re wrong. Then the troll starts talking about how this always happens to him, that he’s always attacked for having a “different viewpoint from most everyone else.” I told him then that it’s because he’s condescending and he has contradicted everything that the original poster and I have said. He said “No, I haven’t. Tell me where I have. I genuinely want to know.” So instead of turning the post into everything about him, I tell him to go back and read. His reaction is to laugh. Obviously there isn’t anything “genuine” about this jackass. The final straw is when the troll claims that we shouldn’t be “defensive, that he is only being inquisitive.” My response was, “You’re not inquisitive, you’re correcting both ___ and I, so that does not constitute a “different” perspective as if it somehow elevates you, it just makes you repulsive.”

But then the owner of the group starts posting paragraphs about how we’re supposed to play nice. Then there’s more posts about how disappointed she is about our behavior and how she wants to shut the group down…but she doesn’t, because other people chime in that despite the fact that I’m a bad apple, the group is a “good idea” and some people claim it’s so great that she should “go global” with it – as if talking behind backs is a new concept. If that’s the case, I’ve got some oceanfront property in Arizona to sell to them. Lots of sand.

Troll #2 happens the next day, when I talk about this conversation. He listens for a few minutes, then bursts in with, “I HATE MEN!” As if I, Chelsea, hate men. I don’t. I do, however, hate men who: Lie, cheat, steal, are alcoholics/addicts, are abusive, are lazy, are filthy, are racist, are bigots, pollute, smoke, chew, are narcissists, and hate animals. I’m sure there’s more to the list, but that covers it for now. By the way, Troll #2 fits into quite a few of these categories. Hey, does someone smell butt hurt?

Troll #3 is on Thursday, the big retrograde day. I am pulled into a discussion about racism and white privilege. The person who tagged me is Native American, and the other person is white (and just happens to be an editor for Bloomberg and fancies himself to be an expert on the world and all experiences, like all white guys). The Native American wanted the privileged white dude to know that every other white person didn’t share his smugness. What it boils down to is that the white guy claims that no matter what, all people suffer, so racism, sexism and bigotry don’t actually exist, and we should just get over it. The examples I gave him – white men kick my cane when I’m in public, but women and just generally people of color don’t kick my cane; or white men shoulder check me – probably doesn’t happen, or if they do, they happen because people are just being shitty to me and it doesn’t have anything to do with privilege. He told me I needed to be friendlier (as in, “You are a woman, so you owe it to me, a privileged white male, to smile at me”), so I told him he needed to stop being a dick.

I’m not sure what the cure is. I don’t know how long this shit storm Mercury started lasts. Mercury is an asshole.

Geneology and Truth

Posted on by akiwifreund

American history isn’t just something we learn about in school—it’s also something we carry in our genes. That’s one insight offered by a new study in PLOS Genetics on how slavery and African-American immigration patterns have shaped the contemporary demographics of the US. The study, which examined the genomes of 3,726 African-Americans, found differences in…

via African-American genes show how slavery and the Great Migration shaped the US — Quartz

Don’t Ever Think ‘Equality’ Is A Dirty Word

Posted on by akiwifreund

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

http://www.huffingtonpost.com/entry/jennifer-lawrence-feminism-equal-pay_us_56d08bfee4b03260bf769e58?