Innovation and “The Bleeding Edge”

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.”

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The Great Debate

When I was 14, I was visiting my dad’s house for the weekend and sleeping on the couch, which was the normal – I didn’t have a bedroom there. I’m a light sleeper. So it was a surprise that somehow between 12:30 a.m., when I fell asleep, and 7:00 a.m., when my stepmom answered a phone call from a stranger alerting her to the fact that her purse was scattered on the stranger’s front lawn, that the house had been robbed – and the burglar had somehow gotten past me. Three hunting rifles had been taken off of the wall along with a video camera and tripod, and of course, the purse.

The next night my dad took my place on the couch with his handgun in case anyone decided to come back. We used all of my babysitting cash to re-key the locks. But this story demonstrates many points: I grew up around guns (that were never locked up), the hunting rifles made it somewhere into the wide world to be used for who knows what, and that we are a violent society. The cops were surprised I was still alive and unharmed.

Not many years later, when my brother was five and a half, he was given his first gun for Christmas. His first few minutes alone with it and he shot out his bedroom light. I was never given a gun because I was a girl. Mind you, I never felt as if I missed out. But my dad and my brother perpetuated craving violence and guns. Even though I was the one who was on the couch, exposed, they were the ones who wanted to kill, kill, kill. At least, that’s what they projected.

My dad’s own father died of a self-inflicted gunshot wound. In fact, Dad was the one who found him. Included in the three rifles that were stolen was the one that Grandpa used to do the deed. It had a strange sort of sentimental value that I couldn’t relate to. Who would want to cradle that weapon, and use it over and over, knowing its history?

Fast forward a few decades to when I lived with violent men. One was the guy who grew up in Manhattan in a household whose own siblings stabbed each other. The last day I saw him was the last time I called the cops on him, when he was supposed to be gone at work while I moved my things out of the house we were renting. Instead he was hiding in one of the back rooms and came out when I set down some moving boxes and attacked me. I struggled to get back out to my car in my stocking feet and he was restraining me and pinning my arms, telling me that if I would just do what he told me to do, we would be happy. I finally wrestled free and got in my car and called 911. The responding police officers bought his big-eyed innocent act and told me that if I called them again that I would be arrested.

Then there was the live-in boyfriend who threatened to shoot me – twice. He also talked about taking his guns to work to shoot all of his co-workers constantly. The cops reassured me there was absolutely nothing I could do until he actually followed through and hurt one or all of us. 

Most recently of course was my downstairs neighbor who moved out the last weekend of July, 2017. He used to beat his wife and abuse their cat. Whenever I had visitors I was a nervous wreck, because I had no idea if he would pound down the door while they were here, falsely claiming that we were too loud, or take it out on me later, screaming and raging and dreaming up reasons to call the cops on me. Worse yet he could of course physically pulverize his wife and cat for revenge, just for existing. He was ex-military so I knew it was likely there was a gun or two or seven in his apartment.

So here we are in the U.S. with our easy access to the worst kinds of weapons and ammunition. I am the one who was laying on a couch while a stranger or two crept past me to rob our house; you would think I would fall into the category of wanting a gun for home protection. I grew up around them; you would think I would relax around them. I’ve lived with and around plenty of assholes who have wanted me dead; you would think that I would feel safer armed.

Fuck that.

First of all, we have over 7 billion people on the planet. We are no longer hunting strictly for food supply. Anyone who claims that is an outright liar. And hunting season is so abbreviated that there’s no need to keep guns out for the entire year to make them accessible to every man, woman and child on the planet. Second, home invasions do not happen with the regularity that the NRA has somehow convinced the gun lovers they do. I remember reading from one guy a quote last week that Texas experiences 800,000 home invasions a year. My answer was, “Are you talking about bugs?” I mean, c’mon. If that were true, Texas would be experiencing a mass exodus.

The biggest and hottest debate that has resurfaced is the arming of school staff. I cannot stress this enough, but there are so, SO many reasons why this is a bad idea. Right now I live in the city where Philando Castille was shot. He had a permit to carry a concealed weapon and told the cops, and was shot and killed anyway. If for some reason some idiots decided arming school staff members would be a good idea, the staff members had better be lily white, because we Americans cannot be trusted to be color blind. Even black cops have proven to have prejudice against black suspects without meaning to.

I posted this article on Facebook regarding an armed officer who never engaged in the shootout that was happening in Florida. He simply hung back while all of those kids were getting shot. I pointed out that if an officer did this, why would we expect teachers to uniformly charge without fear or hesitation, and to act correctly? A friend of 27 years, whom I considered a decently good friend, didn’t like that I used this as an example of why we shouldn’t arm teachers and staff. He also didn’t like that I proposed that we have stricter gun laws regarding background checks, wait times, amount of ammunition sold, amount of ammunition guns could fire, types of guns that could be sold on the market, and age of buyers/operators. He resorted to calling me an idiot. Finally, he just outright blocked me. 

But am I an idiot? I’ve just been trying to stay alive. I have all of this violence swirling around me, and all of these men are insisting that they have a right to violate me. I’m saying no. I will continue to say no. I’m good with saying no.

Lastly, here is a comprehensive list from a woman named Karen Nichols in Ottawa Center, Michigan; she had many questions regarding arming teachers and staff, and did a great job of articulating them:

Which teachers get guns?
Where will the guns be stored?
Who decides when guns can be brandished?
What penalties will apply if teachers mishandle a weapon?
Will teachers volunteer for gun duty?
Can teachers refuse it?
Who will audit their adherence to regulations?
Will students know which teachers have weapons?
Who will be liable if the teacher with the gun becomes the shooter?
What will be the consequences when students are accidentally shot by a teacher?
How will armed teachers communicate in a tactical situation?
Will teachers with a history of mental illness be allowed to use weapons?
Will teachers be required to disclose any history of mental illness?
Will teachers be issued a weapon? Reimbursed for purchase? For ammunition?
How will administrators conduct non-weapon-related discipline against a teacher?
Will there be armed assistance available to deter workplace shootings?
Who will shepherd the armed teacher’s classroom while the teacher is attempting to locate the active shooter?
What happens when a teacher misidentifies a student as a threat in good faith?
Will teachers who do not carry lethal weapons be offered non lethal alternatives?
If an armed teacher is shot, can another teacher employ his or her weapon?
How will armed teachers identify themselves to arriving first responders?
Will armed teachers be required to learn how to give first-response medicine?
Will armed teachers be required to attempt an arrest before using lethal force? Under what circumstances?
Will proficiency training on weapons count for teachers’ continuing education and professional development?
How will insurers adjust health and other rates to account for the presence of armed employees?
Will teachers receive additional pay for being armed?
how often will armed teachers be re-evaluated for licensing purposes?
Will armed teachers leading field trips deposit their weapons in a personally owned vehicle or school-owned transport?
Will one teacher per wing of a school building receive weapons? Two? Three?
Exactly which standards will count for proficiency—greater than a big-city police department, State Police, FBI, hobbyist, marksman?
In training scenarios, how will using force against innocents be penalized?
Will racial sensitivity courses be required?
Do parents have a right to refuse to send their kids to schools with guns?
Will students have to sign waivers? Will parents? What if a parent signs a waiver for a minor student who, when that student turns 18, refuses to abide by its provisions?
Will teachers on probation be allowed to carry weapons?
What about teachers with active union grievances? Complaints about sexual harassment? Anger management? Divorce proceedings?
Will armed teachers wear holsters?
Will they be stationed strategically during pep rallies or other gatherings?
Will they participate in lockdown drills as if they were armed or unarmed?
Will funding for the policies outlined above be distributed according to local budgets, statewide formulas, or national formulas?
Will schools in high-risk neighborhoods receive more or less funding? Suburban schools?
What is the right ratio of armed:unarmed teachers by grade level?
What is the procedure for debriefing and assessing armed teachers’ performance during a crisis?
Can an armed teacher who flinches be fired? Can an armed teacher who breaks protocol be rewarded?
Will preschool teachers have guns?
Will teachers in “juvie” (high risk) schools have guns?
Will the teacher or the school be liable if their gun is stolen?
Can administrators carry weapons? Can they do so in disciplinary situations?

Think about this: I quit playing clarinet after 8th grade because my band teacher was an outright asshole. After I quit, he was fired for punching a student. But let’s give him a gun, right?

Unhooked Generation – The Book

Originally published in my MySpace Blog, 2/10/2008.

Unhooked Generation by Jillian Straus

The woman that wrote the book was not a clinical psychologist; she was only a woman in her 30’s wondering why it seemed so much more difficult for people in our generation to find lasting love.  She traveled to different locations around the U.S. to interview random people that responded to her ads posted in free newspapers and Craigslist.  Some points really hit home for me.

1.  Do you make a list?  I know a man who has listed 42 qualities his future partner must have.  I even have a list myself, though it doesn’t go up to 42:  must pay his own bills and not try to steal my money; must bathe at least daily; must brush teeth 1+ times a day; must be nice to me.  Some standards are reasonable, I think, and some absolutely no one can live up to.  I don’t even think I can list 42 qualities about myself, so how do I know if I fit that manifest my friend created?  Oh, and once you have your grocery list made, then you can go shopping on eHarmony or Match or Plenty of Fish to make your selection.  Like a piece of meat.  What ends up happening is that we reject everything, which leads to….

2.  Why suffer?  If I don’t like something, or if it isn’t working for me, why not just cut it off and be done with it instead of beating myself up trying to make it work?  Relationships ARE work.  Or at least they require effort.  Expecting for things to just fall into place is unrealistic, and bailing is the easy way out.  I have absolutely been quick to jump ship but can honestly say that I’ve never regretted doing so.  I just don’t put up with any juvenile bullshit anymore.  Of course, the “why suffer” mentality is one of the main reasons that couples get divorced; think about it:  how many marriages do you know about that have lasted for less than a year?  I can think of 7 of my friends right at this moment.  Is it that they’re picking the wrong partners, or just giving up too easily?

3.   Fear of making the wrong choice:  let’s talk about the guy with the 42 requirements again.  He repeatedly says that he never wants to commit, because what if the next person that comes along is a better match for him?  He’ll never, ever be happy, I guarantee you that.

4.  Never allowing yourself to connect because you are afraid to fail at marriage.  Wow, this is a big one – I have always said that if I’m crazy enough to get married, it will be only once.  Half of the interviewees said they were afraid of failing by not living up to the seemingly seamless relationship their parents have, or failing by turning out just like their divorced parents.  I’m afraid of the second one myself.  No one goes into a relationship thinking that it’s going to fail, but it’s another thing to think that you’re not even going to allow someone to get close so there is no opportunity to fail.

5.  Losing our gender identities.  Yes, women’s lib was a blessing, I will bang the drum about that one all day long.  It’s what allows me to be a single woman in my 30’s [now 40’s] with a career and the ability to stand on my own.  But……..I could really use a mate who knows how to work on cars.  And by the way, can he also like going to art museums, and cry at mushy movies too?  But I don’t want him to open the freaking door for me, I have two arms and two legs and can manage on my own.  But can he still pay for dinner, because he’s the man?  I can say that I want a really strong, stoic man who can build a house but still tear up over “Love, Actually”, but how realistic is that?  It’s a bunch of mixed messages that lead to misunderstanding because one person gets pissed off that the other one didn’t pick up the check.  It is every man for himself, I tell ya – because there are no boundaries on the gender roles anymore.  Better brush up on your communication skills.

6.  Technology.  How easy is it to erase someone from your cell phone, and therefore your life?  How easy is it to send e-mails and instant messages, but never talk on the phone or see each other face to face?  We’re definitely disconnected and our spelling skills are becoming atrocious – because we are lazy.  And scared.

This is one of the few relationship/self-help books that I’ve read from cover to cover – usually I get bored pretty easily or can’t relate to what the message is.  This one is fascinating because I have so many single friends, just like me, wondering what in the hell is going on.  If you recognize any of these factors within yourself, this may be an interesting read for you too.
[Disclaimer: Since it’s now 10 years old, some references are going to be outdated, but the ideas are still relevant.]

 

If Nothing Else, There Is Hope

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. 

Suffering For Art

 


Yesterday I posted this article on my Facebook page, indicating there are certain entertainers I won’t support even on Netflix/Hulu/Amazon because they still receive royalties. I won’t even check out their movies from the library.

I was subjected to “Annie Hall” my freshman year in college. Woody Allen is a whiny fuckhead criminal, and I don’t understand why people, especially women, keep clamoring to work with him. Who does he remind me of? The abusive guy who doesn’t live downstairs anymore. I have paid attention to the trailers of Woody’s subsequent films, and quite frankly, they have nothing to offer beyond what we have already seen. Who keeps saying he’s a genius? Other men who want to bang underage girls.

One of my friends agonized over the fact that “great artists” might be shitty people. And by “shitty people,” he means that they probably rape and molest women and/or girls and/or boys. But, by god, look at their art! What would we miss out on if they didn’t do all of those things to other people! So the conclusion that this friend came to is that we should still support and admire the art – works by Salinger, Brando, Led Zeppelin, The Doors, Mailer, Eliot, the list goes on.

My answer is no. I’ve never seen any of The Godfather movies. I’ve never lingered on a Pollack painting. Never read Salinger. When I find out that someone is a douchebag, I drop them like a hot mess. I will never again laugh or relate to a Cosby joke. He drugged women to fuck them, and then, you know, blamed them or tried to gaslight them.

Another friend who jumped in on the conversation jokingly said that he would support the art if he could pirate the material rather than outright buy it. But he would still miss the art too much if he had to give it up because he loved it too much; he was a huge John Lennon fan, and that outweighed any bad behavior.

What is especially disturbing is that the second friend wrote up a little speech during the first wave of #MeToo posts, saying he became aware of how unsafe women feel after a female friend asked, “But is it safe for me to go there by myself?” He expected and received a lot of accolades. But he and the other guy were pissed at me for this post about not supporting assholes and criminals. I mean, they both apologized for offending me, but only after speeches about why I shouldn’t be mad. Don’t be mad, brah. We’re just flawed and we don’t want to stop bad behavior if it results in good art.

We all attended the arts high school together. I’m always surprised and then disappointed when I think that we’ve all evolved at the same rate, because we had this really great experience, and I’m proven wrong. I’m a harpy now. Why can’t I be all cool about loving the art and understand that men will be men and suffer and need salvation – but know until then, they are going to beat and rape women and children?

I’m just wondering when I stopped deserving to be safe. Is it because I’m an artist and I should expect violence from other artists for the sake of art? Is it because I’m disabled and I should be thankful for whatever comes my way? Where is the motherfucking disconnect?

I’d much rather throw my money and my spirit at artists who aren’t shitty people. For instance, I like Sara Bareillas. I’m pretty sure we’re not going to be reading any shockers about her. I also like X Ambassadors. Have you heard about their partnership with No Barriers for the Renegade Scholarship Fund? “The organization helps people embark on a quest to contribute their absolute best to the world. From middle and high school students, to adults with disabilities including wounded veterans, the organization serves people of all backgrounds and abilities united by a common desire to live purposefully despite the barriers in our way.” And since I live across the street from the art gallery my sister manages, there is an endless stream of local visual artists I get to talk to and take pictures of their goods to post online for social media.

There are so many opportunities to support positive artists, both living and dead, that I don’t feel the need to give my attention or money to those who destroy others. I don’t accept the status quo. I don’t go along with the idea that I should like them or their art just because they are “classic” or “geniuses.” Now that we have the internet, we have access to so much more material. Besides, last time I checked, The Doors aren’t putting out any new songs.

A Really Adult Post About Male Sexuality

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

Medical Sexism and Trump Grabbing My Girl Parts

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.

Can’t Find What You’re Looking For? Try The Thesaurus!

This was cute. Normally I’m not a fan of the Copy-and-Paste-Monster, because clearly the man is sending out hundreds of messages and just waiting to see who responds, but this guy either didn’t ask a friend for a second opinion before he started sending his out en masse or he had great confidence in his writing skills. Whatever the reason, enjoy:

Hello hope this finds you well!
I wanted to take a moment of your time and introduce myself, my name is J++++++n.
I have read your profile and really liked what you said concise and interesting.
Anyways you seem like a very interesting person to me and I would enjoy getting to know you better. Check my profile and hopefully there’s something that will interest you and if so, and you are interestead feel free to write me back.
Have a great day.

(Just as a reminder, this is what my profile says:
*******I’M ALLERGIC TO:********

– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Lame excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap, hip hop
– Republicans
– Being called “cutie”
– Organized religion or prayer

What I’m doing with my life: Writing articles regarding rare and chronic diseases, trying to find the joy in life with new restrictions. Seriously – there is no way “arrow root pudding” is a real dessert!

I spend a lot of time thinking about: the fact that no one wanted to share a deep, dark secret, so OKC took that question away.

You should contact me if:
– You practice kindness and wit.
– You strive to live an authentic life.
– You are not addicted to beverages or chemicals.
– You are a non-smoker (of all things) and don’t use chew/snuff (ever).
– We live in the same country; my preference is to connect with someone in the same metro area because I dislike long distance relationships.
– You understand that no means no.
– You know and use proper grammar, spelling and punctuation.
– You would like me to proofread your profile for grammar, spelling and punctuation errors.
_____________________________________________________________

You would think that with just the basics, there would be at least a few things to chat about, even if it’s “Why can’t I snort coke off your tits?” – if you remember, that’s a gem from a previous OKCupid guy. Anyway, I would be interested to know why the guy doesn’t know any other term to use besides interested because there’s a whole world of knowledge out there on Thesaurus.com.)

********Fun fact:  In the time it took to sign on and copy my profile to this post, 23 guys looked at my OKCupid profile! Dangit, there’s going to be more material soon, I can just feel it. Breaking hearts and taking screen names……

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

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.

Ch-Ch-Ch-Changes

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.