Bullies

I don’t know if I can really look back at this objectively, but I’m going to try.

Growing up, I had one parent out of four who really, really didn’t approve of me. I was always too fat. It made him really upset that my hair fell out in perfectly round circles – what was up with that? I must have been doing something to myself, I should just stop it! (But it was my body attacking itself.) He told me that he loved my sister more than me because she was the first born, and my brother more than me because he was the boy he always wanted.

While I was still in elementary school, we moved from a large city to a very tiny town of 300. This was right in the middle of my awkward years when I couldn’t figure out what to wear on my strange new body and my teeth were still crooked like I could eat a carrot through a fence because the dentist wanted to wait a few more years before recommending braces. Fifth grade was brutal. I had almost no friends the entire year because a girl from my class (who was tall, also awkward, with blond frizzy hair and shifty eyes) gave me a horrible nickname and meanly declared that no one could be friends with me or come near me. She got one of the boys in our class to write me love letters as a joke. He then made a big deal of “breaking up” with me, or as much as you can break up with someone after a few badly written letters, and their little group passed around what I wrote to him. (Imagine my surprise when I visited my step-cousin’s cousin’s house and it was HER house a few years later. I thought she was going to shit her pants. I had no idea where my step-aunt was taking us, I was just riding with everyone.)

I also had bullies on my bus. They didn’t just pick on me, my sister was a target too. Our bus ride was a long one, nearly an hour in the mornings and about 40 minutes in the afternoons. The worst of them was the stop immediately before ours but still quite a distance from our house because we’re talking farm country. She was MEAN. ROTTEN. The others were further along the route. One was a girl in my class who has always been very mean spirited. Her whole family has taken on the same persona as her mom; her dad busted his ass, but it seems that her mom was never happy with that and was always focused on appearances and putting her dad down. So that’s what she embraced. So I was an easy target. Fat, awkward, and crooked teeth. There was a scrawny boy, I think he may have been a year younger than me, also part of their little group, that my sister ended up punching because he lifted her skirt. It’s too bad she didn’t break his nose. And then the last regular in that group was another girl, who, again, was spiteful. She was good friends with the girl with the nasty mom and she seemed to thrive on the nastiness herself. (As a side note, I have become friends with some of these people on Facebook to see if anything has changed. It hasn’t.)

I’m just going to skip way ahead here, to the bullies online. First there’s the guys who have dating profiles on the various dating websites. After a few decades of doing online dating between being in relationships, I have decided to not use online dating anymore as a means to find connections, because it can be pretty brutal. In my 20s and into my 30s, there were times when I would take things that were said to me very personally. It was really tough to let stuff go. This was also the time when I was in the process of losing all of my hair, so I was really self-conscious of my appearance and didn’t really know how to initiate the conversation about looking like Mr. Clean to prospective dates (or guys that I had already been out with a bunch of times). But everything nasty that was said to me was excused by the guys as being in the interest of not wanting to waste time. They HAD to say it. They couldn’t wait. They couldn’t filter. I had to take it or they would move on. They had to be shitty. If I couldn’t handle it, then it was my problem and not theirs. How can you reason with that anyway?

Now of course we’re in the era of Facebook. We thought this would be a fad that lasted maybe 5 years, maybe a bit more. But they keep changing the algorithms so we stay hooked. I try to take breaks, but they usually only last 4 of my waking hours. Facebook is filled with all kinds of ills. I belong to some rare disease patient groups because I know it’s likely I will hear something I’m not aware of, and it’s also a good way for me to keep track of doctors and medications. I don’t often comment, though. I will see the same people posting – sometimes daily. I know that some people need to find any reason to connect. It drives me a little batty because sometimes they ask, “Has anyone tried ______?” and of course there was just a long discussion about it the day before. If I have something different and useful to say, I will add to the discussion.

Recently in one of the groups, a guy posted that he was taking hydroxychloroquine for our condition, the same as what “cures the virus.” That really upset me, because first of all, no one takes that medication for our condition. It’s the wrong medication. Second, that medication also does not treat COVID-19. So I posted that along with scientific journal articles, plus the CDC directive stating that that med should not be used because it has caused people to die. Suddenly 4 guys jumped on and said all kinds of personal things about me, including one who said he hoped I didn’t have children – as if that related to me correcting this misinformation that this guy put up in the first place. So a few days later he came back on and said he did indeed put the wrong medicine up, that he was actually given an antibiotic of a completely (not even close) name. No one apologized to me for being shitty to me. Then two days ago from today, a woman jumped on and was shitty to me, telling me I was off topic and I should apologize for that. I wrote back and told her that ignoring all of the other posts and focusing on me for correcting misinformation, misinformation that the original guy admitted he was responsible for, was shitty. Then she just wrote another line saying, “Well, it was off topic.” Yep, it sure was, initiated by the original guy. But I’m going to correct it with science every time if someone else is going to put the wrong info out there.

Just yesterday, I was in another patient group for another rare disease. It’s a little more difficult for me to describe everything that happened or is happening with my brain and cerebrospinal fluid in a short enough paragraph that will make sense. Part of that is conveying this understanding that my symptoms are unusual and disarming to the doctors, to say the least. A fellow patient basically called me a liar. My fuse is pretty short these days, so I tend to stomp and snort once as warning, and that’s all you get. After that I will cut a bitch. I explained how many doctors I had encountered (over 100 in 10 years) and being banned from the Mayo in writing, and added that Barrow had just told me to go to a “neighborhood neurologist” because they didn’t know who to send me to in their own organization. This other patient continued on her crusade to tell me that I didn’t know what I was talking about and there was no way I could guess that doctors hadn’t seen my symptoms before. So I told her congratulations on deciding to be a bully to a fellow patient. In fact, all of the doctors were stumped by my symptoms, their words.

Also not too long ago was the issue with my cousin who lives on the east coast. He told me to get off my lazy ass when I became disabled after the ten failed brain surgeries (but before the issues with my vertebrae and the bones in my hands starting to fuse together). I did mention this before, but I didn’t hesitate to tell him to eat a bag of dicks. He is a drunk bully, and I just kind of feel sorry for his wife and daughters.

I’m 46 years of age now. There’s certain things you stop caring about, I suppose, but I think my thing is bullies. I mean, really, I think I’ve experienced them all. My feelings just aren’t getting hurt anymore. After the most recent exchanges, I did a temperature check and I felt nothing. That parental bullying is gone. My cousin hasn’t ever really been in my life. Elementary school is long done. I haven’t ridden a school bus since 10th grade. I’m definitely not doing online dating anymore, I think I gave that the old college try and then some. And those patient groups…well, now I can just scroll past them. Sometimes I get random comments online because of articles that have been posted that I respond to. Those are usually the lowest of the low. I think I remember one lady telling me to “get that thing in the middle of your forehead fixed.” I still have no idea what she was trying to say. It seems no one else did either because she didn’t get any responses or reactions.

I think one of the truest tests was after an exchange with complete strangers in a comment section, a stranger sent me a message that said, “Have you been drinking? You must be lol” and I was thinking, wow, he came all the way over here just to say that. No imagination. He’s the laziest bully ever.

It’s Hard Out Here For A Crip

[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.

 

 

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.]

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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…

Are You Being Served?

in·ter·sec·tion·al·i·ty
ˌin(t)ərsekSHəˈnalədē/
noun
  1. the interconnected nature of social categorizations such as race, class, and gender as they apply to a given individual or group, regarded as creating overlapping and interdependent systems of discrimination or disadvantage.
    “through an awareness of intersectionality, we can better acknowledge and ground the differences among us”

    The state of Arizona doesn’t believe that I exist. I’m a woman with a bachelor’s degree, but I also have some rare diseases that have disabled me to the point that I am unable to work. I really had worked my ass off until I had my last shunt failure and surgery, when my neurosurgeon threw in the towel and gave up on me. The judge that I sat in front of for six minutes in March of this year noted in my paperwork that I had an exceptional work history. So my monthly pay is above the poverty level, because it’s based on the amount of take-home pay for the past 10-15 years (at the judge’s and state’s discrimination and calculation).

    Let me back up a little. I got my official judgement saying I’m disabled. Yay. Then my attorney told me that I might have to wait a number of months to see any money. But on May 24th, I got a call from the federal office saying that my money would be released on May 27th. I asked how it would be paid. They said it would be sent how I asked it to be sent. I asked how that was possible, since I hadn’t specified. They said, oh, it looks like we have info from Arizona. (Instant panic, since I haven’t lived there for 3 years.) I said no, absolutely not, I have all of my info updated for Minnesota, there’s no reason for it to be sent to Arizona. They said too bad, if you want it sent to Minnesota, you have to go to your local Minnesota office.

    So I did, on the morning of Friday, May 25th. I was a little worried because it was right before the holiday weekend. Luckily it wasn’t a long wait. But I found out that the money was already sent to Arizona – they didn’t wait until May 27th. It was sent on May 22nd. My former bank in Arizona reopened my account, accepted this rather large amount of money, and just sat on it. They didn’t tell me, and didn’t send the money back. For days. I was able to work it out so they could send the money to my current bank so it wasn’t lost. Anyway…

    So, while at the Social Security office making sure they didn’t send anything else to Arizona, I mentioned Medicare. The man helping me said, oh, didn’t you know, you’ve had it since January of this year? Another panic. I knew just from reading some info and talking to others that meant that I had a deadline coming up in just a few days. I had to sign up for a supplemental insurance policy and medication policy or I could lose out on tens of thousands of dollars. And Monday was a holiday. That meant that I had Tuesday, Wednesday and Thursday to make phone calls and sign up.

    This is no small task. I take 19 prescription medications, one of which is a weekly injection. The doctor that prescribes that had actually been working on getting an exception because my condition has been worsening. I reached out to the Minnesota SHIP office to talk about supplemental plans and medication plans. We found a supplemental plan that costs hundreds a month but could possibly transfer if I moved out of state. For the meds, I plugged in all of the names and we found out the injectable is not covered. It costs $37,000. Welcome to the world of rare diseases! So I had to call the manufacturer and talk to them about a patient assistance program, which might also allow me to get on a higher dose.

    So now back to Arizona. When I talked to their local office that helps seniors find supplemental plans for Medicare, they couldn’t believe that a disabled person under 65 had a disability check that was above poverty level. It isn’t a huge amount, mind you, but it doesn’t meet the standards for poverty. So I can’t qualify for medical assistance as my supplement, which is their only option in Arizona. I also can’t qualify for utilities assistance, transportation assistance or food assistance. The woman on the phone had very little experience but offered to find out more info and call me back. When she did, she told me to buy the policy in Minnesota and take it with me, as there was no hope for me in Arizona. 

    So Wednesday afternoon, I purchased the supplemental plan for Medicare and verified it could come with me (in writing) if I moved out of state. It’s possible it’s going to become much more expensive, but not nearly as expensive as having nothing.

    Thursday I finished sifting through all of the medication plans and tried to pick the best one. It was the least restrictive with the medications that I currently take (most of them wanted to restrict my Singulair, for some reason, of which I need double the normal dose). So I managed to get everything signed up before my June 1st deadline.

    However, while all of this is going on, there’s something else that’s been cooking in the month of May.

    Actually, this started in March. I had a crown fall off. A bunch of decay was discovered – first on that tooth with the crown, then the tooth next to it, then two teeth above it, then a bunch of cavities all over my mouth and it’s painful to eat or drink. I actually had to file a complaint against my dentist that I was seeing for about 2.5 years because he was physically abusive. When he was examining or treating me, he would pull my mouth roughly – so much so that the last time he left bloody fingerprints all over my exam napkin, and I had a swollen face for five days after. It was only after my massage therapist asked me who had been abusive with me that I filed the complaint.

    The complaint was supposed to have been anonymous, according to my insurance. However, they revealed all of my info, and the dentist counter-complained (like I was the asshole, because I was the one sitting in the chair with my mouth open). Then my insurance told me to go to two other dentists, which I did, and then they told me to go to my original dentist, and he refused (DUH), all to get this decay and a root canal taken care of. The two new dentists told me that they wanted me to go fully under and to be in an oral surgeon’s office or hospital because of my anaphylaxis history as well as my inability to numb with Novocaine. They referred me either to the U of MN or to Hennepin County Medical Center (HCMC).

    I called the U of MN for five days straight, and got different answers each day. They would say they didn’t do sedation, or didn’t take care of complicated patients like me, or were too booked. In the end, I got nowhere. So I turned my attention to HCMC, which happens to be a trauma 1 hospital. They told me they weren’t taking new patients (a huge lie). Then they told me to get a note from my doctor specifying which medications I’m taking – but that was only after they refused to answer my messages for 3 weeks. They wanted to see if my medical assistance would run out before they had to do anything.

    Well, ta da! First day of no medical assistance, June 1st! That means I get absolutely no dental coverage. So even though they have been aware of this issue for a few months and I’ve done everything they told me to do, I got zero help. By the way, it’s likely I’m having the trouble with the decay in my mouth because the abusive dentist put metal back in my mouth even though I told him in writing and verbally many times I’m allergic. I found out after the two other dentists examined me that he put metal-based crowns in my mouth after I paid thousands to remove all the metal in my mouth because of my allergies.

    I’ve already talked to my dental office that I used to go to in Chandler, Arizona for 11 years, and they have an in-house plan. For $100 a year I can have my cleanings, checkups and x-rays, and then 20% off of fillings and other stuff. So that’s the route I’m going to have to take. Plus I like them and I know they’re not going to rip me up and make me bleed on purpose.

    If there was ever a time that I have felt the impact of being poor and being female and being ignored completely, this is certainly one of those times. I’m sure I’ll have many more opportunities.

Co-Dependency: I’ll Scratch Your Back If You’ll Scratch Mine

Co-dependent: I’m quick to use the term. It’s not so easy to define, though. I’ve been trying for better than a decade to find just the right words. It seems most psychology publications are in the same boat as me.

PsychCentral defines it as “a person belonging to a dysfunctional, one-sided relationship where one person relies on the other for meeting nearly all of their emotional and self-esteem needs. It also describes a relationship that enables another person to maintain their irresponsible, addictive, or underachieving behavior.” So really, they provided two definitions, not just one.

GoodTherapy.org breaks it down with a good ol’ list (because we love bullets) and explains that the “old” way of thinking was that everyone’s feelings were centered on one person’s addictive behaviors. Now co-dependence is recognized in much broader terms to include the role of caregiving, denial of personal problems, low self-esteem, feelings of guilt when offered help or attention from others, sensitivity to criticism, perfectionism and fear of failure, a projection of competence and a need to control others.

But the definition from GoodTherapy.org doesn’t make clear that there has to be at least two people in the relationship to make it co-dependent. At least one of the parties has to have low self-esteem and be sensitive to criticism and project a false sense of competence, and have support and attention from another party to continue carrying on with those behaviors. And let’s be clear, here: both or all parties can be co-dependent upon each other. Mothers and daughters, friends, teachers and students, lovers. Of course, some relationships are much more intimate and lasting than others.

Here is a comprehensive list from CoDA.org (Co-Dependents Anonymous.org):

Patterns and Characteristics of Co-Dependence; Co-dependents often:
• have difficulty identifying what they are feeling.
• minimize, alter, or deny how they truly feel.
• perceive themselves as completely unselfish and dedicated to the well-being of others.
• lack empathy for the feelings and needs of others.
• label others with their negative traits.
• think they can take care of themselves without any help from others.
• mask pain in various ways such as anger, humor, or isolation.
• express negativity or aggression in indirect and passive ways.
• do not recognize the unavailability of those people to whom they are attracted.

Low self-esteem patterns; Co-dependents often:
• are extremely loyal, remaining in harmful situations too long.
• compromise their own values and integrity to avoid rejection or anger.
• put aside their own interests in order to do what others want.
• are hypervigilant regarding the feelings of others and take on those feelings.
• are afraid to express their beliefs, opinions, and feelings when they differ from those of others.
• accept sexual attention when they want love.
• make decisions without regard to the consequences.
• give up their truth to gain the approval of others or to avoid change.

Control patterns; Co-dependents often:
• believe people are incapable of taking care of themselves.
• attempt to convince others what to think, do, or feel.
• freely offer advice and direction without being asked.
• become resentful when others decline their help or reject their advice.
• lavish gifts and favors on those they want to influence.
• use sexual attention to gain approval and acceptance.
• have to feel needed in order to have a relationship with others.
• demand that their needs be met by others.
• use charm and charisma to convince others of their capacity to be caring and compassionate.
• use blame and shame to exploit others emotionally.
• refuse to cooperate, compromise, or negotiate.
• adopt an attitude of indifference, helplessness, authority, or rage to manipulate outcomes.
• use recovery jargon in an attempt to control the behavior of others.
• pretend to agree with others to get what they want.

Avoidance patterns; Co-dependents often:
• act in ways that invite others to reject, shame, or express anger toward them.
• judge harshly what others think, say, or do.
• avoid emotional, physical, or sexual intimacy as a way to maintain distance.
• allow addictions to people, places, and things to distract them from achieving intimacy in relationships.
• use indirect or evasive communication to avoid conflict or confrontation.
• diminish their capacity to have healthy relationships by declining to use the tools of recovery.
• suppress their feelings or needs to avoid feeling vulnerable.
• pull people toward them, but when others get close, push them away.
• refuse to give up their self-will to avoid surrendering to a power greater than themselves.
• believe displays of emotion are a sign of weakness.
• withhold expressions of appreciation.

As I revisit the definitions, I evaluate first my own behavior, but also a few specific relationships near me (that I have to be careful not to become too invested in, though I tend to become protective and outraged when I spot misbehavior). I think that the actual name “co-dependency” will be adjusted within the next 5-10 years, though what it will morph into will be a great mystery.

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.