mansplaining

It’s Hard Out Here For A Crip

Posted on by akiwifreund

[This isn’t a plea for more help. I try to spread my requests out, because everyone has their own lives. I have actually had certain friends get mad at me because I asked for help more than once in a year. So in the spirit of friendship no, I don’t need anyone to get my groceries or prescriptions.]

Facebook is great until it’s not. Just hang with me as I explain this.

I’ve got so many medical conditions, allergies, prescriptions, over-the-counter medications and supplements that I have everything alphabetized on a sheet that I keep updating and printing every time I go to appointments. I can’t remember everything. I’ve got two injections that I give myself every week in my stomach and thighs, and it’s possible I’ll be getting a third. One of them really hurts and it takes a long time to push the syringe down; my hands cramp up and a few times I didn’t go long enough and have shot the solution all over myself when I pulled the needle out. (I hate wasting that precious medication.)

Nothing is simple with my healthcare. I just got done coordinating a treatment for hidradenitis suppurativa, which means I have to fly to Minnesota for two different lasers and get Pronox gas since Lidocaine doesn’t work on me topically. One of the issues we had to figure out was what to do about me breathing back OUT into the air – what if I was breathing out contaminated microbes and spreading COVID-19? So the office had to track down a device to add to the machine. It took me a week and a half to put everything together and find flights/hotel that I could afford that would also work with the office’s schedule.

At the same time, I was also scheduling surgery for some scarred areas with the hidradenitis suppurativa. Again, since I don’t get numb from Lidocaine, I have to be put under completely to get the spots removed. They are not going to be closed up but rather left open because of the nature of the condition; it’s better not to make a tunnel, that would just encourage the disease to start again in those spots. So now I have to also reschedule other doctor appointments because I will be uncomfortable for a couple of weeks, especially since I can’t take pain medications because of mast cell activation syndrome.

I met with a new cardiologist because I’ve been having major problems with pitting edema, despite being on a very high dose of spironolactone. He put me through a very thorough ECG and ultrasound of my heart and carotid artery, and wants me to have a tilt table test performed. I have a resting heart rate of 110+ now but a very normal blood pressure which sometimes dips low and have had the diagnosis of POTS since 2017 (but symptoms since 2000), but he wants to be sure that that is what I’m still dealing with. When it gets into the summer months here in Phoenix, it gets a lot harder for me to deal with the heat, and I get closer to blacking out frequently, even in my apartment with air conditioning.

I saw my OB/GYN because I still have cysts in my breasts. I get checked every six months. So far they haven’t changed in size, so I might be able to go once a year.

I was being lectured by my primary care doctor and rheumatologist about being on steroids long term for ankylosing spondylitis. I told them that going off for even a day is very impactful, but of course, they didn’t believe me, so I had to demonstrate it. I went off for 7 days and then went in to my rheumatologist’s nurse practitioner. She saw my hands twisted, red and inflamed to three times the size of what is normal, and also observed the spasms in my back that also severely affected my breathing. I’m allergic to all NSAIDs including ibuprofin and naproxen sodium because of mast cell activation syndrome, so I’m not able to take anything besides Tylenol at this point, which is absolutely unhelpful. After seeing for herself, she agreed to continue the steroids. (Side note: the cardiologist told me that I obviously gained weight on the steroids because I was eating more. Wrong. I eat about 1,000-1,2000 calories a day. Doctors love to shame women. One of my fellow patients was told to lose weight when she only weighed 95 pounds at 5’4″.)

I went back in to Barrow to follow up on an EEG. I had reacted to the strobe light even though it hadn’t been noted on the report and the tech saw it happening and kept asking if I was okay. I also have been having issues with my tongue and mouth going numb, and my left arm has been having spasms. I know that my brain has had changes that are different from the last two MRIs. This appointment was set up with a nurse practitioner because the neurologist I previously had left Barrow (yes!!! he was horrible), so we had never met. It seemed like she understood what I was explaining about my history. She left the room, came back, and said, “We’re really specific here, and no one knows what to do with you. Can you just go to a neighborhood neurologist? Maybe they will know what to do with you.” Seriously. When I go to a neurologist who is outside of a big organization like Barrow, they throw up their hands and say, “But I’m just a neighborhood neurologist!! What do you want from me?” The NP gave me two names as a suggestion, but since I saw a different doctor in the same office already, I can’t see anyone else.

My thyroid stopped working at optimal, which explains why I was feeling extra tired and achy, and looking even more like a defensive tackle. Whenever that happens my cholesterol also goes through the roof. So I had to adjust all those meds again.

I’m being monitored for clotting by an oncologist/hematologist, so I had to go in for more tests. Right now it looks like my factor IV and fibrinogen are high. The fibrinogen makes sense because of what has happened to all of my shunts.

I need to have a laser treatment on my gums and one of my molars pulled but that has to be put off indefinitely because of the current situation. These are complications in my mouth because of mast cell activation syndrome. I can’t ever get dental implants, also because of mast cell activation syndrome – I’m allergic to metal, cement and glue/bonding.

Throughout all of this, I’m also trying to coordinate all of my meds. Some are traditional meds that I can get through a place like Walgreen’s. However, I’ve encountered some shortages. So it’s been left up to me to follow up to try to figure out how to get them. One of my meds I couldn’t get for FOUR months. Some of my medications have to be compounded because they aren’t available in the form I need to take them on the regular market. For instance, one is available as an eye drop, but I need to be able to take it as a pill. But the prescribing doctor is in Minnesota, and I’m overdue to see him, and he can’t do a televisit because I’m not physically in MN. None of my other doctors will write the script. See how this shit gets complicated? Besides that, I also had to go through the approval process multiple times for the shots because I failed out of multiple medications. I talked, I faxed, I talked some more, I faxed some more, I scanned, I talked, I waited on hold, I faxed, I scanned, I faxed…you get the idea. Oh, and they also ran credit checks on me. That’s something new all of them are doing. They are saying it’s because they want to make sure I’m getting all the benefits I can get, but obviously that’s a big fat lie. I’m wondering who they are withholding medication from. Drug manufacturers have a lot of power.

That sums up everything I have been dealing with for the past couple of months.

I’m on Social Security Disability Income (SSDI), which means I worked before I became disabled. In fact, the judge that decided my case said I truly worked as much as I possibly could before I really couldn’t work anymore. I now fall into the category of having a very low income, but it’s not low enough to receive any additional help. I don’t get any assistance with housing/rent, food, utilities or transportation. Some people get discounts but I don’t. The last time I had this income was 1993.

With this income, I have to pay for my monthly medical premiums. The premiums alone add up to $438.20. One of the plans I have isn’t from the state I live in. The state of Arizona doesn’t believe that someone could exist who is below the age of 65 and receives income above poverty level, who is also disabled. That’s me. They don’t have any policies for anyone under 65 who isn’t poverty. The craziest thing happened, though. I was actually living in another state when my case was decided, and the state had one – only ONE – policy that I could buy that could travel to any of the other 49 states no matter where I lived. I just can’t miss a payment for the next 22 years, ever. If I do it could mean hundreds of thousands of dollars of extra costs for me because of all of my crazy health stuff. This dollar amount does not include the money I spend on prescriptions, OTC meds or supplements. The supplements are absolutely necessary because they help to treat mast cell activation syndrome.

I spend something in the neighborhood of $100-150 on transportation a month because of having to go to doctor appointments, labs, scans and to the pharmacy. For about a month and a half Medicare was allowing our medications to be delivered, but they stopped allowing that, so I have to go and get my meds now. We can’t do mailing here in AZ because the heat degrades medications. (There have been a few times when the ice packs have been barely cold on my shots that have been delivered to me.)

I am signed up on two different transportation programs for disability, and I’m supposed to wait outside and be visible to the drivers. This is fucking hell in AZ in the summer. My heart condition makes it so much harder for me to be up and out in the heat.

So let’s talk masks, and COVID-19.

I have 8 masks now, with vents. My very first mask a few years ago was a Vogmask. I started wearing it on flights because I wanted to avoid breathing in the shit everyone was passing around in the cabin, because I was sure to catch whatever they were dishing out. So far it’s worked. And let me tell you, those vents make all the difference. Right now I’m on a list for the backordered masks from England for the fanciest of fancy vented Cambridge masks; I’m in for 2.

I’m up on COVID-19. I’m comfortable with the science, been correcting misinformation. One of my drivers tried to tell me the 19 stood for it being the 19th version of the virus. Ha. Ha. Nope. I think the people who walk around saying their freedom is being taken away are complete assholes and deserve what they get. I think the people who say they will make themselves sick with bronchitis or other lung infections by wearing a mask are assholes.

So when I’m going around to all of these appointments, seeing my doctors, getting labs and scans done, I have my mask on. There have been a few times where there blackness has been closing in on me because transportation has insisted I be outside in 100+ heat, my wig is dripping hot, I’m gasping for air, and I have to pull the mask off because I can tell my pulse is through the roof and my BP is dropping.  It will happen at the grocery store too. I’ll be walking around and suddenly my body will just crash. I have to take the mask off for a few so I don’t end up on the floor. I do my best to stay masked up unless my body rebels. When the episode is done, the mask goes back on.

Last night, a friend posted on Facebook that if someone didn’t mask up, he was going to cut that person or people off (with an exception for some medical situations). I saw some people posting, including comments about how there was no way there should even be exceptions for medical. So I raised my hand and said hey wait a second, there has to be exceptions, and we still need to go out. And one guy lectured me about how I needed to have my groceries and prescriptions delivered and my doctor visits should be telemed. I told him to fuck off.

I don’t know this guy. He doesn’t know my shit. But groceries cost me at least $30 extra delivered because of the delivery fee and tip, and they NEVER get what I need and they never do substitutions when I ask for them, which would result in another run to the grocery store. Do I have tons of extra money to spend? Do I have $30, or $60, or $120 a month to throw away on delivery fees? Prescriptions were only allowed to be delivered by Medicare for a short amount of time. Now I have to go and get them again. As far as the doctor visits go, my shit is so complicated that I am required to go in. The docs don’t give me a choice.

This guy’s response was that he thought I would want to not spread the virus and be responsible, and if I didn’t wear a mask, I should just at least pull my shirt up over my mouth and nose. So I told him that I’m not a bottomless pit of wealth, and he’s telling someone who uses a cane and two arm braces and whose face is also partially paralyzed to walk and pull her shirt up. He then offered to “get my groceries” and I told him to stop talking. His response was “Damn.” A particularly dumb broad piped in about how rude I was to refuse his help by telling him to fuck off.

Being a disabled, middle-aged, single, adult female is a fucking challenge. There was that time when a complete stranger grabbed me by the arm and dragged me into an elevator because I was waiting for someone to turn around their power scooter and he assumed I couldn’t handle the elevator on my own. So here’s this guy on Facebook telling me that I have to pay for delivery and get only half of what I need, get my prescriptions delivered (even though Medicare doesn’t allow it) and just see my doctors on video (even though they won’t allow it). Yes, I’m going to tell him to fuck off. He offered to get my groceries AFTER I told him to fuck off. He wanted to feel better about being an asshole and making HUGE assumptions. I would never, ever, ever let someone near my groceries, my medications or my living space who would try to ridicule me like that and then try to strap on the hero cape. “No, really, I’m a good guy.” Don’t ever trust a guy who tells you he’s a good guy right after he does something shitty. And I’m still masking up.

 

 

My Milkshake

Posted on by akiwifreund

Just a little update: I was finally diagnosed with ankylosing spondylitis in May, and my case is fairly advanced. I have growths all along my spine and just got confirmation on Friday that all of the difficulties I’m having with my hands (horrible pain, swelling, tenosynovitis in every tendon, and cysts) is also likely from the AS, as I have grown to suspect. Humira is out for treatment because it accelerated my hidradenitis suppurativa, so I’m going through testing and trying to get approved for a different injectable. I’ve already been denied by my insurance company because the co-pay is $1,523/month so we’ve started the paperwork for a patient assistance program.

I also flew back to Minnesota twice to get two different laser treatments for my hidradenitis suppurativa. The dermatologist who is treating me started experimenting on another patient and mentioned it to me when I was moving away last year. I tried this as a last-ditch effort because absolutely nothing was working. Boy, what a difference! After the first round I got about 60% improvement, but it took about 3 months to see it. I’ve got about 75% improvement now after the second treatment. I know I’ll have to go for a third treatment but I’m hoping to wait until after the snowy season, which means I’ll have to postpone at least until April/May. This is a really, really difficult disease. I couldn’t convince any of the local Phoenix dermatologists to use the same method, so now I have to spend a fortune in travel and hotels (can’t stay with family because I’m allergic to their animals).

During all of this I had to fire my pain doctor for dropping the ball in a major way. I finally got into Barrow again with a new neurologist (I really liked the resident and I hope he doesn’t burn out; the doctor seemed suspicious of me because all of my stuff is so weird, but hey, I think neurologists are pretty much useless, so right back at ya, buddy). The next thing I think I have coming up is my teeth. I’m having a lot of issues with the gums and pain with two teeth, and I noticed a growth that I thought was just some swelling initially. Mast cell activation syndrome really fucks with all of this.

So just in the past week, I had some perverts knocking on my virtual door.

I still have a notice on my FetLife profile that I’m not participating in any activities because of health issues; that includes parties, one-on-ones, texting, role-playing, etc. I will say hello and that is it. In all honesty, I’m sick to death of online stuff anyway. I much prefer real life. But this is what I got in my inbox:

“A nice smile nice conversation nice lips nice eyes nice hair nice tits nice pussy nice ass nice personality all boils down to one thing. Can this person make me orgasm and use rope to tie me up and take advantage? After having long stressful days and weeks and unfulfilled sexual satisfaction a person just wants one thing. With me it’s just straight to the point. No need she pretending to be the princess or the dominated woman that you pretend to be and your outside personal business and work life. I didn’t know what what’s going on until I made her come and orgasm over and over again until she blanked out several times. Are you then figure out what was going on, suggest a few commands and before you know it she was coming on command. I’m straight to the point very blunt. I host everything. I get a hotel or motel room here in Tucson You show up in the proper attire and the session begins just that simple. No strings attached just you and I and you getting what you want. All I ask is give it one try. After that if this is something that you don’t want then you cut the string and this is all forgotten about.”

[I’m just going to say here that it’s every man’s fantasy that his dick has magic juice. Seriously. Every guy thinks he can make a woman black out or blank out. Hahahahaha! Or this Jedi mind trick shit – cum on command. Fuck you. Fucking lazy shit.]

Me: Kind of a bummer you went through all the trouble of copying and pasting that without reading my profile.

Him: Sweetheart I read your profile, how was I or anyone to know how you are now? Your last entry was 5 months ago. 
Note: [His thought process is that my request to be left alone doesn’t matter. His dick has magic juice. P.S. – I hate being called sweetheart when I’m calling him out on shitty behavior and we don’t know each other.]

Me: That should be a clear indication that nothing has changed. Sweetheart.

Him: Maybe a person got off FetLife because they lost their account information. Maybe the person wanting a break. Maybe a person was in a certain situation but things got better but just never updated.
[Translation: Maybe I have a magic dick and if you get some of my magic dick juice, you’ll be cured. I will then claim that on my profile – and in this copied and pasted paragraph for the next victim. Whatever is going on, though, I’m not listening, I’m not listening, I’m not listening, I’m not listening, I’m not listening, I’m not listening…]

Me: Maybe we’re done talking now.

* * * * * * * * * * * *
Crickets after that.
* * * * * * * * * * * *

I accepted a friend request from a friend of a friend on Facebook. It seemed like we had the same political leanings (something I ALWAYS check for now) and he might possibly know my mom and stepdad – he knows one of their friends, at least. I don’t accept a lot of strangers. So he messaged me immediately.

Him: I couldn’t resist your beautiful eyes! And I am working on my hesitancy with beautiful red headed women. Frightens me some….love to look, but never touch.

[Jesus H. So he puts redheads up on a pedestal of weirdness. I wasn’t even going to bother telling him that I’m bald. None of his fucking business. I’m pretty sure he had already printed off a picture of me at work and was taking my picture into the bathroom with him to wank off.]

Me: I appreciate that you want to appreciate certain features, but you should do that on FetLife. Once you fetishize a person, you miss the red flags and seeing them as a whole person.

Him: That’s your first conclusion of me based on one comment? Kind of discriminatory!

[WTF. He immediately opened up with his fetish.]

Me: You don’t understand discrimination. You approached me. Redheads aren’t different beasts.

Him: I did not say you or they are…I only indicated my opinion.

Me:  Look, you obviously have a fetish. It’s okay. Own it. This whole thing about being injured because I recognize it is weird. Go out and explore all of your kink.

Him:  I do. It’s the enjoyment of discovering all kinds of people and their diversity.

Me: Fine. But I’m not on FB for fetish.

Him: Fantastic, me either and I will happily delete contact with you, while at the same time reinforcing my fear of redheads.

Me: Haha! Baby.

[So, he hit me up regarding his fetish, then claimed he didn’t have a fetish, then told me that our only purpose of contact was for his fetish and redheads are back up on the pedestal. Yippee ki-yay, motherfucker.]

Let’s Play Family Feud

Posted on by akiwifreund

This week has been really tough.

First, I had to run to the pharmacy to get some meds. I belong to a reduced rate program for disabled people and it’s contracted with a cab company; I just have to let them know I’m in the program when I call. I did that. The phone rep didn’t want to take down my address or the address where I was going. I found out when I got in the cab that the rep also didn’t specify that I was on the program, because the cabbie was expecting cash. He was pissed. He called into the home office and kicked me out of the cab, telling me to call for a different one. I had already waited 45 minutes for him (but I didn’t tell him that). My anxiety went through the roof. 

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But then he called me back and said the home office fixed it, and he would take me – but he wasn’t happy. I ended up giving him some extra cash on top of my fare, which he appreciated, but I had to fight back tears when all of this went down. I did everything right, yet I was punished for the fuck up. 

Two days ago, I had to go to an appointment because of my tunneling infection disease. If any of you have hidradenitis suppurativa, or you feel brave and have a strong stomach and you want to see videos, have at it. There is a guy here in Phoenix who has posted some pretty gnarly videos of his hiney. Mine DOES NOT look like that (yet), but I do have lots of scar tissue and tunneling. The crazy thing about this disease is that if you drain or squeeze any infection out, it actually forces the tunnels back further, like what a gopher does if you try to chop into its tunnels. The infections are incredibly painful because of the acidity of the bacteria. It’s also not the oil glands that clog up, but the sweat glands. My active areas happen to be the places where I sit. Most women have trouble under their arms. Bless you, ladies, for having it anywhere. It’s three times more common in women than it is in men.

Anyway, I had to get one spot tended to (I have over 50 active spots right now) because it was getting so painful that I couldn’t sleep. The doctor was trying to inject me with steroids and Lidocaine, not realizing that Lidocaine doesn’t work on me. So…I don’t get numb. Not one little bit. Before anyone came in to work on me, I had another panic attack and more than a few tears, feeling overwhelmed by everything happening at once.

At some point when I was sleeping last week, I hyper-extended my left knee outwards. When I got out of bed, I could barely put weight on it, and I noticed bruising around the knee cap. My quadriceps above the knee cap also swelled up. At first I put on a couple of knee braces, but then my left hip started hurting from the misalignment as well, so I gave up and went to my pain doctor. The doc and his nurse practitioner were reading up on my conditions and asked me to do the laying down/sitting up trick to move around my CSF. I got a referral for physical therapy for someone who specifically knows how to treat patients with hypermobility, but I had to put it on hold, because my short bus transportation has been a problem. 

In August, I received a notice from the company running the accessible transportation in the Phoenix area that I would only be eligible if the temperature was 90 degrees or greater. I sent in a 3-page letter and some highlighted medical records. I was scheduled for a hearing to try to overturn that decision on Tuesday. I received a call today from an extremely cheerful woman (think Sesame Street) who told me that they decided to approve me unconditionally, no hearing needed. I thanked her and told her that it had caused me a lot of stress. I wanted to swear at her but didn’t want my privileges revoked.

So now, tonight. There was a meme going around of Trump and Kanye making out, because let’s face it, that’s what they do. A cousin who is all the way up Trump’s ass decided to comment on my sister’s post and say that he was disappointed in her post, that he loved our dad who passed away young, that I (Chelsea) had unfriended him (the cousin) for his viewpoints and that he still loved us. Well, I’ve got some screen shots – not all – so you can read them. But the conversation that led to me unfriending him in the first place was him telling me that he was tired of paying for me. Basically, he believes I should die rather than get healthcare. This is someone who has been to rehab and probably needs to go again. But he’s telling me to get off my lazy ass; I must be lazy because I’ve had 10 failed brain surgeries.

Andrew1
Andrew2
There was a little more that I typed before I blocked him, but I ended it with this:

Because he really should eat a bag of dicks. He wasn’t around for any of my surgeries, or for the 7 years it took me to figure out what I had with very little help with any of the 60 doctors I saw up to that point. I guess he even threatened me for crossing him, but I jumped off that conversation before seeing it, but other people did. What a great guy, huh?

Secrets and Lies

Posted on by akiwifreund

Every Sunday at 12:00 am EST, a group of postcards are published on Postsecret.com. This was something that was started a long time ago by a man named Frank who originally set up an answering machine that people could call into and leave their anonymous secrets. It graduated to an anonymous postcard opportunity that people could send in to his address, and he would publish a handful every week.

Then he started making collections of books. Devotees would make their own postcards and instead of mailing them in, they would go to bookstores and slip them inside books waiting on shelves with their rightful owners. Or the postcards would make their way inside library books, not necessarily by the last person to check them out, so one could never assume there was a clear path of those secrets.

Frank started doing live shows where people could submit their secrets to be read aloud. Now there’s a theater performance where the postcards are being acted out like little short plays. For a while, a Post Secret display was up at the Smithsonian, and a display of selected submitted postcards was set up in San Diego to visitors to admire.

I’ve been a faithful reader of Post Secret for years now. I also have a few books. But I rarely send in postcards, and I have never left cards in library books or items being sold in a book store. The past few months have been really tumultuous and I really felt the need to spill my guts – because some things were getting lost in the shuffle of current events.

My heart skipped a beat because recently, as I was scrolling down the published postcards, there was one of mine. I actually mailed off three cards at the same time. This one made the cut. My handwriting, my cut-out pictures, my outrage and fear and exhaustion. I kept looking at it. I wondered if anyone I knew was looking at it and recognized my handwriting. I also wondered if it even mattered, because I’m always outspoken, and after a while, people just tend to tune me out anyway.

But then it happened again: another one of my secrets was published. However, it’s not my type, it’s not my picture, and it’s not the entire message. Frank only used the first line and went and found a stock photo and pasted some text onto it. I was edited. 

This is what it’s like to be a woman, every single day. I honestly didn’t know that he was editing others’ post cards that were being sent in before posting them. I have no idea how often he does it. But I can tell you there is nothing I said that was illegal or immoral. He has published secrets that talk about suicide, murder, abuse, theft, and just about anything else under the sun. I can assure you that mine included none of those. Yet, he decided that I needed to be censored. 

This entire past week as we have sat through Kavanaugh and Ford being questioned, those of us women and men who acknowledge the trauma have endured either long term or short term understand this concept of being censored, and of having our experiences being minimized. When we do reveal our secrets, whether it’s in front of the entire world or it’s with something as small as a postcard, we are automatically accused of lying. In the meantime, our testimonies are changed and twisted to something unrecognizable. 

The biggest lie is that “two families are being torn apart” by these proceedings. Focusing only on Kavanaugh and Ford for a moment, Kavanaugh is only going to be disappointed if he doesn’t make it on the Supreme Court. He has had a lot of insulation from the Republican party telling him he’s a good guy, no matter what he has done and what he does now. Ms. Ford, on the other hand, has had death threats. She’s been called a liar when she can’t remember the finest of details, even though she remembers far more than Kavanaugh. In order to stay alive she’s had to go into hiding. Kavanaugh hasn’t. That isn’t equal treatment by far.

What hurts me the most is hearing from other women that Ms. Ford (and the other women) must be lying because this is the first time they are hearing about this. I know for a fact one of my family members was abused and we never talked about it, even to this day. I have had friends and co-workers tell me about their abuse from their family members. I have had friends either try or succeed in raping other friends. I have had my own experiences with sexual violence, as have countless women I am close to. During a recent discussion with another woman, we acknowledged that the official statistic is supposed to be one in six women experience sexual violence, but we don’t actually know someone who hasn’t had something happen – whether they want to admit it or not.

But we don’t sit around and talk about it. We certainly don’t call 911 the minute our sick uncles pull their dicks from our 4-year-old mouths, or when we’re struggling to figure out if we gave a friend mixed signals and if the cop is going to believe us if we call it in, even when we’re in full panic attack and the shaking never stops. (I’m saying “our” and “we” because these experiences belong to all of us.) Sometimes I don’t hear other women’s experiences until decades have passed. I can’t talk or write about all of mine.

What can we do now?
– Believe victims
– Stop shaming victims
– Stop treating men who manipulate and violate others sexually and violently as if they are the victims – they are not
– Vote for public officials who support women’s rights and human rights in November, not a patriarchy.

It’s a small list, but it will make all the difference.

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.”

The Great Debate

Posted on by akiwifreund

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?

Ladies First

Posted on by akiwifreund

I grew up in Minnesota, and I currently live in Minnesota, though there was a big break of 20 years where I lived and voted in other states. Still, one of the bright and shining lights in being in this horrible position of having to burn through all of my personal savings and deplete my entire 401k plan just to live until I find out my fate in a much-delayed disability hearing is that from my mayoral candidate to my state representative to my House and Senate candidates, everyone is a Democrat.

And the two Senators from Minnesota are very popular; Amy Klobuchar is a champion for women and often works across the aisle to find common ground so that bills don’t stall completely. The most recent bill (embarrassingly) is the one outlining what needs to be done in the case of sexual harassment – because nothing has been in place or updated for more than 50 years. Amy Klobuchar’s office is “following” my disability case, though for the time being, there is not much they can do to speed the process to the hearing because I’m technically not completely down to zero dollars (though I’m close) and I’m not close to death at the moment. Things have changed quite a bit since that concept of approaching your senators and representatives for help was introduced.

The other, Al Franken, often makes the news because of his relentless and sarcastic grilling during committee hearings. As recently as Wednesday night, after another video was posted on Twitter and Facebook, people were calling for him to run for president in 2020 because of his no-nonsense approach and seeming transparency in all areas professional and personal has made him the darling of many who tire of the current shitgibbon in office who picks fights with other world leaders via Twitter.

Of course, everything flipped on Thursday morning when it was revealed that Al forcefully kissed a woman after she refused him, then pretended to grope her while she was sleeping.

Al is actually a friend of friends, so I’m going to start there. I’m going to imagine knowing him for a few decades as someone who went to his house, or he came to mine, watched his kids grow up and he watched mine get bigger, and maybe we talked about how I finally got diagnosed with this really sucky disease that has no cure and not a great prognosis – because that is what happened to my friends. And it seems like he genuinely cares and wants everyone to have a better life.

My friends were hurt and disappointed. It’s difficult to wrap your head around having something like this hit the news and it touches every corner of your life. How do you explain it to children, who also see it on the news and hear adults talk about it? How do you bear the burden of close people being really disappointed, not to mention millions of strangers? How do you feel safe around someone who says that they respect boundaries and is a champion for women but then demonstrates the opposite?

Al even co-sponsored a sexual assault bill; it addresses how first responders are trained in handling rape victims and how to interview them. Abby Honold had to fight her rapist for two years in court in order to get a six-year sentence for her attacker. As soon as the story broke regarding Al’s behavior, Abby contacted his staff and requested that he immediately remove himself from the bill, and he agreed.

I tried to talk about this situation with a man who I generally see as supportive to women. When the report came out and was immediately confirmed and an apology was issued, I was extremely disappointed too. I admit I don’t personally know Al, but fuck, I’m a woman. I’m a woman who has worked with men. I’m a woman who has been out in public. I’m a woman who has been groped without permission. I’m a woman who has been kissed without permission. I’m a woman who has faked pleasure and orgasms in order to get away from someone as quickly as possible because I have recognized danger. The man that I tried to talk to about this knows this, because we have talked about it over and over.

But this time, he told me to shut up. He told me that the woman who reported it accepted Al’s apology, and that’s all that is needed, and my opinion doesn’t matter. Then he said he was sorry he got into the subject with me. Then he said he had bigger things to worry about. Then he went into these big, long speeches about how what Al did wasn’t as bad as what Roy Moore did, and it was before he was a senator, so he should just be left alone. This entire time he was spouting off, I didn’t say anything. There wasn’t anything I could have said that he would have been receptive to. He was in Lecturing Middle-Aged Privileged White Male mode. 

Why do I take it so personally? Just last week I had been talking about adding Al in on my disability case in trying to get it pushed through faster because my funds are running so low, but my instincts kept holding me back. I don’t know why. Now I’m afraid to ask my elected official to help me just because I have boobs and he might want to feel me up in return for helping me. Why does everything have to have a fucking cost? Why do I have to whore myself out? I truly don’t think that men understand just how much of a betrayal this is, when we confirm that yet another person has abused their power.

A man saw fit to tell me that my opinion didn’t matter, then he went on to tell me all about his – about men forcing themselves on women, and his conclusion was that it wasn’t that bad and it could have been worse. Another man posted his own conclusions, saying that as long as love and dating have been around, “unwanted feelings” have been a part of the whole thing, and we should just deal with it like adults. Here’s the thing, though: Al and his accuser never dated. Ever. And for part of it, she was asleep. I realize that every man has a “wake me up with a blowjob” fantasy, but when a woman is in full fatigue gear and wearing a flak jacket and helmet and is in a deep sleep sitting up on a plane surrounded by men, exhausted, she’s probably not fantasizing about how she can fulfill their high school porn dreams. The same can be said about my asshole ex-boyfriends who didn’t believe me when I would get pissed about them feeling me up in the grocery store when I was trying to take care of a long list and they were contributing absolutely nothing of value, including money and effort.

I really, truly wish that men would put their dicks down and listen.

A Slap And A Poke

Posted on by akiwifreund

It’s crazy being me. I say this so many times. I had mentioned the rare disease in my regular every other Tuesday get-together (most everyone has heard about it at some point), and a new guy had it in his head that he was going to school me on how he was going to cure me with diet and a holistic doc. He had the usual probiotic and chelation recommendations but also insisted I should eat sauerkraut. He couldn’t believe that said sauerkraut would instantly release histamines and give me hives. He also couldn’t believe that the Mayo would turn me down. I told him that I don’t ask for advice because I am always 1-7 years ahead of anything anyone can ever tell me, and I’ve never met anyone with my particular neurological symptoms with the mast cell disease.

<sigh>

On Monday, I was supposed to get a high volume lumbar puncture. That was the way it was ordered. This meant that the opening pressure was supposed to be read AND fluid was supposed to be taken off. When I was in the fluoroscopy room, I asked the radiologists and staff if they could carefully document everything before and after because my symptoms would change. They then offered to have a physical therapist evaluate me. I said great, yes, no one has ever offered that to me so I didn’t know it was an option. So they called the doctor to see if he would change the order.

However, when they got the doc on the phone, he changed the order and said forget it, only get the pressure reading and don’t take any fluid off at all. I was floored. First he wanted at least four vials (which is a lot), and then he wanted nothing?? I said that even if the opening pressure was normal, if they took some off, they would still see an improvement in my symptoms for a few hours. The doc said no way. Do not take any fluid off.

The radiologist hung up with him. He told me that he couldn’t go against this new directive and I had two choices: go ahead and get the pressure reading only, or stop everything and come back some other time. But here’s the thing: I only got this lumbar puncture because I called this neurosurgeon that I saw two years ago and begged for it, because I haven’t had my pressure checked since then. My current neurologist has been telling me I’m overdraining (even though no one has checked me) and I’ve been saying that the pressure in my head is high when I’m upright, and I felt like getting this check would help settle the fight. But the neurosurgeon wouldn’t agree to see me in the office. This was all I was going to get. So I went ahead.

I don’t metabolize Lidocain properly, so even though the radiologist juiced me up liberally, it wasn’t enough. It was also tough for him to penetrate my dura – possibly because of the sclerosing issue caused by my high histamine levels. After all of that pain my opening pressure came up as a boring normal level. Nothing to see here, folks. Except it completely rules out what my neurologist is saying about my shunt overdraining. My guess about why it’s not giving me a high reading is that the pressure lowers when I’m flat. There’s only been a couple of times when I’ve had high readings and I’ve been flat.

On Monday night, I ate some homemade spaghetti sauce and woke up the next morning to find that my entire mouth had swelled up, and the lining had sloughed off. I also had sores all over the inside. So tomatoes are now a big no-no. That’s a bummer because I make killer chili and lasagna.

Also kind of new in the past few weeks is another diagnosis. I’ve been struggling with this for at least the last 7 years as well. Doctors were telling me that I must be doing something wrong, blah blah blah. It’s super painful. I have hidradenitis suppurativa. I’ve had it come up in two different areas not close to each other and had to have “surgical intervention,” which makes it officially grade II. I’ll be seeing a new doctor Monday to talk about injections; it’s controlled by a medication that is similar to Imuran, which I was on in the past. The crazy thing is, I saw a very extreme case of it a month prior on a British show on Netflix called “Embarrassing Bodies” but had no idea that it was the same as what I had brewing. (Let me tell you, if you are fascinated by all things medical, that’s a good one to watch.)

V-Day

Posted on by akiwifreund

I ran into my next-door neighbor yesterday as I was coming back from the pharmacy up the street and she was heading out to her car. We usually only exchange a “hey” and weak smiles. Instead, I said, “Did you hear the downstairs couple screaming for eight and a half hours Saturday???”

She said, “Oh, I guess he has PTSD, so that’s why he’s violent.”

I said, “That’s NO excuse. None.”

She walked away from me quickly and snidely said over her shoulder, “Well, stuff happens in relationships.” 

Yeah, it does. I can tell you all about the relationship downstairs. There’s a lot of crying. The guy rages and screams and says that he CAN’T EXPRESS HIMSELF LIKE SHE CAN and SHE’S GOT IT EASY and EVERYONE LETS HER TALK BUT NO ONE LETS HIM TALK and I can’t hear her response clearly because he’s raging and screaming and telling her to shut the fuck up. Sometimes he tells her she’s stupid for touching his stuff. Sometimes he tells her she’s stupid for cleaning a certain way and that no one else cleans that way in the entire world. THE ENTIRE WORLD DOES IT BETTER THAN SHE DOES. If she would just LISTEN TO HIM THEN THINGS WOULD BE BETTER, but NO, SHE’S GOT TO BE FUCKING SELFISH, and WHY DOES SHE MAKE IT SO HARD ON HIM? She’s so self-centered!

This went on for eight and a half hours Saturday night. The only break was when they had visitors at around 7 pm to sing one of them – I think the husband – happy birthday. Just a half hour beforehand there was sobbing, so someone had to get cleaned up before the friends came over. Then when the visitors left, there was a huge, audible sigh, and the fighting resumed. 

Is this what my next-door neighbor really believes is the norm? Is this really what is healthy in her eyes?

It doesn’t feel good to me. It makes my skin crawl. Specifically, it affects me because I have been in it before. The worst was Drummer #2, the guy who would write me hate letters in dry erase marker on the kitchen tile counter overnight and cover the entire counter and I would wake up to chaos. Our fights would last hours and days, and the scripts were the same: he couldn’t talk about his feelings (while screaming at me), if I would only do things his way then he wouldn’t get pissed off at me (but the rules were always changing), and by the way, why was I so selfish?

But I didn’t learn my lesson with him. The most recent live-in boyfriend that I had turned violent after we moved in together. He became very unhappy after realizing that I wouldn’t be able to wait on him hand and foot because I’d be recovering from one of my many surgeries, and it really pissed him off that I made twice as much money as him. He shoved me three weeks after one of my surgeries. I broke up with him five months after we moved in together, but I still kick myself for even letting it go that long.

Eve Ensler, the creator of “The Vagina Monologues,” came up with a brilliant movement: V-Day. On Valentine’s Day, it’s important to remember that it’s not always roses and chocolates – sometimes it’s booze and bruises, or worse.

http://www.vday.org/homepage.html

And of course a block down the road from us in St. Paul is the oldest women’s shelter in the U.S.

But even though we have these wonderful resources, and we have the women’s march in D.C. and around the globe, and we can say “pussy” and “vagina” without raising an eyebrow, there is still such a huge disconnect.

Why is my neighbor so flip about “stuff” happening in relationships? Is she just so fucking grateful that it’s all about pleasing the guy? And is her assumption that I’ve never been in a relationship so I don’t have a clue? Oh, honey, let me direct you to my blog…

But I feel like it is such a never-ending battle, for me, and for all women, to be considered equal and to not be slut shamed or used as punching bags, and to make sure we are not buying into some patriarchal and misogynistic vomit.

The Ballad of the Broken Neighbors

Posted on by akiwifreund

“FUCK. FUCK FUCK FUCK FUCK! SHUT UP! JUST SHUT UP! FUCK YOU!”

It first came on Sunday night, a man’s voice, from the direction of my windows to my right. I had my ear buds in and had been laying in bed, watching movies, as usual. My first thought was that a guy was watching a sporting event and was just generally being a dick and being really passionate about a goal that was scored.

But then I heard a much softer female tone answer. I could tell she was in tears but I couldn’t make out what she said. Then he again exploded: “FUCK YOU! FUCK YOU! SHUT UP! SHUT THE FUCK UP!” Then he punched something, hard, multiple times. It may have been the wall, or it may have been a piece of furniture, but I don’t think it was her. I couldn’t tell where it was coming from. I got out of bed. This building is old, built somewhere around 1910, and the floors are the original wood. They creak with every step I take no matter how quiet I try to be.

I went to the kitchen, and it seemed to be slightly louder. I could hear them both. I have a very tiny apartment, only 360 square feet, and much of the wall space is covered with art, so it was really difficult for me to find any blank wall to put my ear to. By the time I did, they had stopped. I hovered for a while but everything stayed quiet. I slowly walked back to bed, wondering if they were truly done.

At around 12:30 a.m., there was another outburst. “FUCK! FUCK YOU! STOP IT! JUST STOP IT! JUST SHUT UP! SHUT THE FUCK UP! FUCK FUCK FUCK FUCK FUCK!” More crying from her, and words, but I still couldn’t hear what she was saying. I got up and they stopped. I got into bed again and wondered when they moved in, because I hadn’t heard anything like it before from that space below me.

At around 9:00 the next morning, the yelling started again. I got out of bed and laid down on my floor so I could put my ear to the floor boards. I could hear them walking around, I could hear the air moving between their bodies and their ceiling/my floor, I could even hear them making holes somewhere close to me – maybe to hang electronics, or pictures? I felt like I was in a movie, where the cinematographer shows how close one character is to the other, and all that is separating them is one flimsy piece of board. I wondered if they could hear me breathing. I tried to hold my breath.

I heard him say, “Why do you always fucking do this?!” and I know that she answered because I heard her voice, but it was still too quiet and tearful to make out the words. Then it was silent except for their bodies moving, and the periodic pounding into the plaster. After about 15 minutes I got up from my place on the floor because it was becoming far too painful to maintain, and I started getting ready for my caseworker to visit. As soon as I did, the yelling started again.

When my caseworker arrived at around 1:30 p.m., I warned her that the couple in the apartment below mine had been fighting, and she would likely hear it. About three minutes later, we heard the guy again, just as loudly as all of his other rants. He never seemed to tire. I imagined that the woman was exhausted.

His rage continued for a total of 15 hours on Monday. He hit something again too. I still don’t think it was her, but it set me on edge. The last screaming rant was around 12:30 a.m. again; I had my ear buds in watching my final movie of the night trying to get tired enough to sleep and his screaming penetrated the ear buds.

For the next two days, Tuesday and Wednesday, he had screaming fits again, but not for the 15 hours that he did on Monday. On Wednesday I typed up a text to forward to the property manager but at the last second deleted it. Then an hour later, a notice was slipped under my door saying that we were getting completely new apartment managers (our 7th and 8th in a year and a half), and to be patient during the transition. That’s why my instincts wouldn’t allow me to text the now-fired old manager!

Today at lunch I took a chance and stopped by the office, which is located directly across from the new tenants’ apartment. I pulled the door shut, introduced myself, and told the new managers that I heard abusive behavior from the male tenant of the two. The new managers said that maybe the guy was just watching a game or playing XBox. I said that was bullshit, and that the woman had been crying. Then one of the managers said that yes, she had seen the woman crying. Then they said they didn’t see any marks on the woman’s face. I told them that didn’t mean anything, and by the way, women don’t cry over scores that men get while playing XBox. They said that I could always call the cops if I needed to. I am fine with that – and I will, do not doubt that – but here’s my problem: I have to actually do things to get ready to get to the front door to let the cops in that people who are able-bodied don’t think twice about. We have a secured front door without an intercom. Plus I am the only apartment within close proximity of the asshole, they don’t touch walls with anyone else (even though my next door neighbor heard him shout once), so when I report him, he’s going to come after me.

The new managers assured me they would talk to the new tenants. I went back to my apartment and laid down, and then someone started banging on my door and buzzing the ancient doorbell. I had to say “Just a minute!” more than a few times to get them to stop. After putting my wig back on, I opened the door to discover one of the managers there; she apologized and said she should have called instead of knocked, but then said that the woman said the man was playing with his XBox. I told the manager that that was absolute bullshit. The manager said that if I felt like the new neighbor was disturbing the peace, I was certainly welcome to call the cops, but she had to accept what the woman told her. I asked her if the woman came up with the XBox explanation on her own, or if the manager gave her that option as a possible “out,” and she couldn’t tell me.

So at this point, it’s me against the neighbors. Why do women stay? They just want the abuse to stop. They want their men to value them and to see how much they love them. They want their love to be enough to fix them. They don’t want to get their men in trouble. They need their men for financial support. I run the risk of both of them turning against me when I pick up the phone.

You had better believe I’m going to call it in.