Why I Won’t Do Internet Dating Anymore

I’m a veteran. I was in the trenches for 20 years, on and off. But I retired in 2016, when the last one turned out to be a binge alcoholic-hoarder-gambler.

My first exposure to the internet was when my father had his brother-in-law set it up at his house around 1991; back then it looked like a bunch of links to articles that talked about space exploration, and it took forever to connect. It was boring as fuck. But as we know, technology doubles every 18 months, so by 1996 I was set up with chat room names and “meeting people.” Then everyone figured out how to meet in person besides meeting virtually.

Then came the dating sites. Oh, Lavalife. You were my gateway to my Saturday night sugar daddy. (Don’t judge; I only let him buy me dinner. But he was so much fun.) Lavalife gave us the option to just look for friends, look for serious relationships, or look for casual hookups. We were all kind of winging it. Some people had very strict rules. If you were on the casual hookups, then no way did you have a chance in the serious relationships. I also met the sweetest man in Atlanta who used to write me actual literature, but because I had to stop traveling to his area because of work, it killed our relationship. The curse of the internet. I know I can’t survive long on long distance. I can barely survive someone living 15 or more miles away.

I went through the quizzes on eHarmony. The response I got was, “Only 3% of the population would be interested in dating you. It might take a while for us to find a match for you.” The internet will either make you or break you.

And then of course later came Match.com, OKCupid.com and PlentyofFish.com. To pay or not to pay, that was the question. Then very specific sites got in on the action, like dating farmers, dating millionaires, dating BBWs, dating amputees…

There was a guy that I met through OKCupid and very briefly dated in Minnesota who I seemed to have a lot in common with and we had fun when we were together…or so I thought. But then he started acting like a total loser. He couldn’t even talk to me like a human. He would just send me a message that said, “Anal?” Not even hello. Or, “Bukake?” Or, “Swallow?” No other words, no other conversation. It was like he was having an entire exchange in his head and he would just send the end of it to me and expect me to say yes. When I called him out on it, all he did was send me more single words, and then change his profile to say that he needed someone to “keep up with him.” Except that isn’t keeping up with him. That isn’t even interesting. What did he need me for? Just to finish his sentences? He’d do fine with one of those real dolls, created just for jizz. It won’t talk back. It certainly won’t tell him to take care of the nasty stripe of fungal infection running along his waist and balls.

And now instant gratification is the preferred experience. Or is it? Because fuck these guys. Reporting women so they are forever banned from Tinder because they aren’t interested? And no one can dispute being banned? Where is the option for “I turned down his laziness, so I call bullshit”?

Guys Are Reporting Women on Tinder for the Crime of Not Being Into Them

 

My Milkshake

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.]

Ushering Out 2018

2018 was a year of personal growth or a very painful year, depending on how I choose to look at it. Really, truly, it was tough. Probably one of the most difficult in all of my years.

It began with me finishing up emptying up my savings account while I waited for my disability hearing, which took me 3 years to get to. Thank goodness it went in my favor. I never would have imagined that I would get to the point where I would be too sick to work. Now my days are consumed by doctor appointments and adding to my list of chronic illnesses.

I moved back to Arizona from Minnesota after trying unsuccessfully to get a complete care team in Minnesota. A major part of the problem was the Mayo banning me in writing, stating I was “too sick to diagnose or treat.” After that, every other area office declined me as a patient, saying that if the Mayo couldn’t handle me, then surely they couldn’t either. I talk about this as much as I can to whomever will listen. I think it’s important to understand. The Mayo is driving a certain model, which is that the insurance companies reimburse according to how successful a doctor or facility is. The Mayo wants to retain their success statistics in turning away me and other patients like me (I’m not the first, and have heard of other – female especially – patients) who have less than simple cases. Now insurance companies are reimbursing regular doctors and hospitals according to their statistics, all because the Mayo was the pilot program.

While in Minnesota, I was able to be home for some big events and to reconnect with my nephews, and for that I’m grateful. I also got to be home for the birth of my niece. I really did get teary-eyed when I got to hold her and all of her hair! She was born with a full noggin of brown hair, definitely from her mama’s side. Now that I’m back in Arizona, I’ll have to pay the big money for plane fares if I have to fly back in a hurry.

The especially painful part was letting go of some friendships that I had had for long periods of time. 

One was with my high school and road tripping buddy, whom I had known since age 16. We had a lot of shared experiences. She always dropped off the face of the earth, for years, it seemed. This last round was four years. She only felt comfortable telling me now. What can anyone say to that?I got a message from her stating that she cut me off because 20 years ago I had promised to bring her food when she was sick with a cold, but I went to Las Vegas with my (first) boyfriend instead. She used to smoke a lot of weed, and when she did, she fought with everyone. She also would only allow me to page her (no cell phones back then), and wouldn’t answer her pager. She has a really warped memory of perfection. But anyway, she and I got sick at exactly the same time 8 years ago. I had wanted to be with her to support her, but I was in really bad shape. I had about 8 months in the whole 8 years where I wasn’t super sick, and I did manage to visit Minnesota in that time, but she didn’t like that I suggested that she visit while I was visiting other family members while I was flying into her city. So according to her, I’m a horrible friend. 20 years ago I didn’t bring her food, and then in that small window of time when I could travel without assistance, I didn’t make enough alone time for her. So long, senorita.

A woman I became friends with through work whom I traveled with to Europe about a decade ago has always had some challenges in personal relationships. My tolerance for bullshit has consistently been pretty low, so I never let her get away with much. (She always likes to tell a story about how she made a cop apologize for pulling her over for speeding.) The beginning of the end was when she had a particularly nasty bout of pneumonia when I was visiting Phoenix last year. I was supposed to stay with her for a few days, but she contacted me a month prior and said she was sick, and specifically said, “Do not call me or text me. I’m sick. I’ll still be sick when you get here.” So I responded and said, “Okay, I’ll make other arrangements. I hope that you’ll be feeling better sooner rather than later and you are being taken care of by a good team of docs.” That was supposed to be it. However, I did hit her up during my visit and offered to wear a mask and visit for a few hours. She flipped the fuck out. She asked why I wasn’t staying with her anymore. I told her she specifically told me not to, and because it’s likely she’s still contagious (because the bacteria are still in her body), I can’t stay with her because I don’t have an immune system. She told me I was a horrible person and she didn’t want to see me at all. Also, I was a terrible friend. She rearranged her schedule for my visit (which I knew wasn’t true because she was at work the whole time, she never leaves work). I told her I could meet her for a few hours in public and wear a mask, but I couldn’t stay at her apartment because she was still contagious. She told me she didn’t want to see me at all.

Then, a few months later, she hit me up and acted like nothing happened. I still have zero tolerance for bullshit. I reminded her she told me that I was a terrible friend and a horrible person. She said she didn’t remember doing that at all, and it doesn’t sound like something she would do. I told her that just because she doesn’t remember it doesn’t mean it didn’t happen (one of her favorite ways to play manipulation). Then I told her to get her shit together and go to counseling.

And wouldn’t you fucking know it – out of all of the airports, and flights, in the entire U.S., she showed up on the one that I was on when I moved from St. Paul to Phoenix in June of this year??? I just about shit my pants. And then I had to pretend I didn’t see her because otherwise she would have come over to me and chatted me up.

Also in Minnesota, my former prom date ran for a Minnesota office, and won. But before that, I received a message from him that his mom died. I felt bad for him, but I couldn’t bring myself to call him back. Mainly it was because the last conversation we had centered around him lecturing me about how my deceased father would be disappointed in me dating men of other races. As if I give a shit. My prom date also ran on a ticket claiming that he was all about “family values,” but he refuses to marry his girlfriend, and they have a daughter together. I also happen to know that he sleeps out in the garage; they don’t even share a bed. Last but not least, he thinks I’m a drag on the system. So fuck him. We’re not friends anymore. I’ve known him since I was 11, but if time is the only common factor, I’m okay with letting this one go.

One of the most hardest hits for me was another friend from my high school years. We fundamentally disagree on guns, how they should be regulated and who should have access. Facebook can be a harsh stage. This friend called me stupid, and then announced he was “taking out the trash” when he unfriended me. I won’t ever change how I feel about guns, and I suppose he won’t either. I’m just grateful we got some unforgettable (at least to me) events in before that. Most of my former classmates don’t know why I was crying at our reunion I planned while I was up on stage. I felt like I was able to give back to so many of the people that supported me when I became sick, because a lot of them were there. This friend was one of them. I’m okay with closing this one with a good party. I don’t think I’ll be able to travel back for more, and even if I could, I don’t think I’ll want to. It’s just too fucking sad.

Last but not least: Well, I don’t know if I can adequately describe this one. Communication? That’s definitely a problem. Assumptions? Those got in the way too. Denial? It’s not just a fucking river in Egypt.

2019 is going to be my first full year of living on my disability income. I am hoping to not have any major upheavals and therefore less expenses than what I shelled out in 2018, except maybe a root canal or two (I can tell #30 and #31 are going to give me hell already). It is a strange existence. One of my biggest challenges is to remind people that I’m not just lounging around, or waiting to go have fun. I also don’t have loads of disposable income. I think the last time I had this salary was 1995. By the way, my mention of my income is not an invitation to tell me all about working from home; I actually used to work from home before I was awarded disability.

No-No List for 2019                                                      Yes List for 2019
Skydiving                                                                       Ferris Wheel
Swing Dancing                                                              Singing
Driving                                                                           Arts Festivals
Arena Concerts                                                            Music in the Park
Golf                                                                                 Board Games

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Sugar and Spice and…NO.

Today was dedicated to running around and getting prescriptions and a flu shot. Nothing special about today except the weather was grey and rainy, which is not at all normal for Arizona.

And oh god, a message that started with, “I’m sending you this message because…”

I didn’t read it while I was out in public. It was from someone I used to be close to, who dropped off the face of the earth for the thousandth time. She sent it through Facebook messenger, so I’m not sure if she previously deleted my email addresses.

The gist of her message was, “I don’t expect a reply. I cut off contact with you because 20 years ago you didn’t bring me food when I was sick and you went to Las Vegas with your boyfriend instead and you didn’t call me. And one time when you were visiting you didn’t call me, I had to call you, and you said you were getting really busy, and I could drive up to St. Cloud to meet up with you or go out to eat with you and your sister and brother-in-law and it offended me.”

So let me explain a few things. When we lived in New Mexico at the same time 20 years ago, she had a pager she would never respond to. That was how I was allowed to contact her. Also when we lived in New Mexico, she was a heavy pot smoker, and whenever she smokes weed, she starts fights. All of her other acquaintances would ask me what was wrong, and I told them to keep her away from the weed if they didn’t want to fight. They finally made the connection. And for the last few months that I was there, I couldn’t get ahold of her at all even after driving to her last known location because she cut off all communication. This is a repeating pattern.

Whatever visit she’s referring to where she had to reach out to me, again, I have never been allowed to call her. She doesn’t believe in talking on the phone. Keep in mind that texting has not been a thing for the entire last 27 years that she and I have known each other. She didn’t like to talk on the phone because it made her nervous; the reasons why changed over the years. Email was not always practical because, again, it was not always portable. So there were times our relationship was limited to mailing letters back and forth. When I used to travel, sometimes I would only be back for 3 or 4 days, and I would have to see multiple households because my parents were divorced and remarried, plus my siblings were grown and married. I was fucking trying to make everyone happy. Plus, hey – I was flying into their state. The last time I flew into the area (not as a resident), I DID see her, stayed at her place and saw her boyfriend perform with his band.

I’m not going to keep score on who didn’t fly out to see me. She had her own shit to deal with. But to be told I’m not worthy of friendship because of these things makes it pretty easy for me to close this chapter.

Let’s Play Family Feud

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

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.

We’re Not Friends

I’m here in Arizona now. This is the most disjointed move I’ve ever done. The movers came to pick up all of my boxes (and very small amount of furniture – two little filing cabinets, two compact bedside tables and my super ugly but very functional hospital bed) on June 27th. I flew out to Phoenix from St. Paul on June 29th on the hottest and most humid day in Minnesota – 100 degrees. I was giving away some drawer units to my parents for their newly-constructed garage, and we had to tear them down completely to fit them in their trunk as well as my suitcases, my parents, my nephews and I for our detour to drop me at the airport. It feels like ages ago.

Thank goodness my old landlord left the little air conditioning unit that I had previously installed that a prior tenant had left behind, or we would have been in big trouble, because that apartment didn’t come with air conditioning. I had a POTS episode from being outside in the heat and humidity and trying to help Dad with loading the car. When I came back in for the final run, I was shaking badly and was nauseated, and couldn’t really answer my mom when she asked if I was okay. I had to get going though because Dad was still waiting outside for us, so I took a few seconds to change shirts and wipe the sweat off of my head and wig and reassemble myself, and away we went.

They dropped me at the curb to check in and get my wheelchair, and my nephews, aged 12 and 9, hugged me twice and cried. Well, we all cried. Then it was time to fight my way through Friday afternoon security. They didn’t give me the option to go through in the wheelchair so I had to walk and get a full pat down because the security scanner doesn’t like spandex. I finally got settled back in my wheelchair and since I was at my gate pretty early, I decided to read through my insurance documents.

Imagine my surprise when a few hours later, I glanced up and recognized the profile of a person who approached the podium to ask if she was at the correct gate. The exchange went something like this:
Her: “Excuse me, am I at the right gate? The flight time says 6:25, but this display says 6:45, so I don’t think I’m at the right gate.”
Employee: “Yes, you’re at the right gate. It’s still the same flight number and city. We’re just delayed by 20 minutes.”
Her: “Oh, okay. I just wasn’t sure because it totally wasn’t the right time.”
Employee: “It’s still the correct flight. You’ll make up some of the delay in the air going to Phoenix.”
Her: “Okay, I just wanted to be sure.”

I recognized her profile before her voice, but those questions were definitely typical. I have wondered over the decade that we have known each other how she has managed to safely leave her house sometimes. What made me instantly freeze and try to hide my half-paralyzed face with my hair was the fact that I had told her to go fuck herself just a few months earlier. Of all of the days I could have traveled and of all of the days she could have traveled, and of all of the cities she could have flown into and out of, and out of all of the airlines to choose from, this was the day and location she picked. Jesus fucking Christ.

When I visited Phoenix last October, I had made plans months in advance to stay with her a few days (because she is one of only a few friends who doesn’t have animals). However, a month before I visited, she became sick and told me not to call or text her. So I made plans NOT to stay with her. While I was there, I offered to visit for a few hours and wear a vogmask so I didn’t catch what she had – which by the way was a very nasty pneumonia that she didn’t immediately kick – and she turned me down. Then she sent me text messages telling me that I was a horrible friend for not staying with her, and “next time” she was going to just keep her personal business to herself. (Usually she saves that last bit for when someone gossips about her. I wasn’t gossiping. I just can’t stay with her because I was born with a compromised immune system, and now I’m on weekly injections that reduce it even further. Something like that could and would kill me.)

In May, she sent me messages saying that she knew I was moving down, and she wanted to know where and when. I hadn’t told her anything. She doesn’t know any of my other friends, save one whom she hasn’t talked to in years. I don’t know where the info came from, but at this point, I don’t care. It’s manipulative and it’s something that she does to feel superior. When I told her that I didn’t want to continue staying in touch because she was so shitty to me, she claimed she didn’t remember saying anything to me. Of course, I have it all in writing, so it’s not my imagination.

That mutual friend asked if I missed being friends with her. My answer? Only when I forget how bat shit crazy she is. I don’t like being manipulated. I told her to fix herself, and I stand by that. (Not that I’m perfect by any stretch of the imagination, but I also don’t claim to have never told someone not to call or text me, and then told them they are a horrible friend for not calling or texting me.)

Now that I’m in Phoenix, I’m a little nervous about being disabled and not being able to get away quickly if I do encounter someone I would rather avoid. That one is a good example. Another one is the former friend who tried to force himself on a mutual friend, and told me that I was crying about my sister and my friend dying 10 days apart just for sympathy. And oh, the ex-boyfriends. One in particular is Drummer #2, who was also controlling, manipulative and violent. I’m almost certain he still lives 2 miles down the road from where I am temporarily staying.

I think this is a good year for purging and starting new. I got rid of a lot of old furniture. I’m going to sever relationships that are unhealthy as well, as sad as that is, especially with friends who have been attached for so long.

Now if I could just solve the mystery of when the stuff I am keeping is actually going to arrive on the moving truck…

Exhaling

April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.

I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.

I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.

I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.

I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.

After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.

But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.

What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)

I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??

My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.

Missed Opportunities Brought To You By Creeptastic

This is another post from my MySpace days.

The Sick and the Dating:  The Weirdo in Mesa  4/17/07

Back in high school, I had a friend named Rachel who was a plus-sized girl that liked to wear trashy clothes.  She had bleach-fried hair, and wore those day-glo green colored contacts because she wanted her eyes to stand out.  One day we went down to a store on Hennepin Ave. (where all the hookers hang out, if you’re not familiar with Minneapolis) to visit a trashy outfit store, and a guy held the door open.  He said “There you go, Green Eyes” and she said “Oh, they’re not real” and he looked her up and down like she was his next meal and said “I bet the rest of you is”.  Thankfully, I didn’t get his attention – I certainly wasn’t going to pipe up that MY eyes were green naturally.  Sleazeball who hits on teenagers, get thee gone!

I’m telling you this story because I found these postings in the “Missed Opportunities” section of the free alternative paper, Phoenix New Times, and it reminded me of THAT GUY.  You know, the weirdo that you laugh with while he says something really disgusting and overt, and you’re planning your escape.  This is the same guy posting these ads.  They are all in Mesa, and he keeps imagining these hot encounters with random women.  Notice how his age changes.

Friday, March 9th – Circkle K main and greenfield mesa – 43 (Mesa)

you are a gorgeous gal driving a station wagon with 3 ribbons on the back! you buy Marlboro reds 100’s between 730 and 745 weekdays!! in am. You have gorgoeus auburn longer hair!! and great body!! I drive a white Ford ranger and parked next to you on this past thursday!! I get smokes too! could I get some fries to go with that SHAKE? hope you read this!! its an older wagon you drive! and you wear tight jeans!! hope you are there monday am! hit me back if you think your it

Location: Mesa
Poster’s age: 43

 

Thursday, March 22nd – circle K on lindsay and baseline Mon. 7 pm – 41 (Mesa)

you were driving a white blazer was at the pumps! you bought an 18 pak of Bud! and asked for a pack of THESES? I bought keystone lite! you have longer auburn hair and tight LEVIS!! that looked so goo around your hips!! no ring seen on your finger!! WOW!!!!

Location: Mesa
Poster’s age: 41

 

Thursday, April 5th – circle K at main and val-vista wed at 4;45 pm mesa – 38 (Mesa)

you were a gorgeous blonde coming in the store as I was leaving!! you held the door and I said thanks! you said anytime!! think u drive a red grand am! wow!! long legs and beautiful hair!!

Location: Mesa
Poster’s age: 38

 

Monday, April 9th – circle K on lindsay and baseline Mon. 7 pm – 38 (Mesa)

thanks for gettin back to me!! but your e-mail address does not work!! or the phone number!! please get bak to me

Location: Mesa
Poster’s age: 38

 

Monday, April 9th – circle k on main and val-vista last week 445 pm – 38 (Mesa)

hey get back to me!! you e-mailed me but yuor e-mila wont go thru!! nor the number you gave me! gorgoues blonde!! jengirl??

Location: Mesa
Poster’s age: 38

 

Sunday, April 15th – hot brunette at Macayos on fri nite in parkin lot – 38 (Mesa)

I was walkin out out with another couple and you were outside with a nother gal havin a smoke!! you said Where do I know you from!! you have a smokin body and great smile!! wished I would have stopped!

Location: Mesa
Poster’s age: 38

 

Okay, buddy, none of these chicks are writing back to you – at least not with legitimate phone numbers or e-mails – because they can smell a lunatic a mile away.  Are you stalking all of the Circle Ks in Mesa?  I knew there was a reason I didn’t like that city. Everything bad happens at Circle K. I remember that from my court reporting days.