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.

 

 

Sayonara, Senor Shorty

Have you ever dated one of those people who blamed everyone else when something bad happened?

The last time we were naked together, all Senor Shorty (height: best guess is 5’1″, I’m 5’5.5″) did was complain about his first long-term girlfriend, and why he was justified in cheating on her. The son they had together is now 12 years old. I tried to steer him away from that topic, because 1. (and I said this): I didn’t want to talk about another woman while we were doing what we were doing, and 2. He has never taken responsibility for cheating. It’s a choice.

Senor Shorty was angry with her because she didn’t service him enough. She was staying at home to take care of their kid, who was born with cystic fibrosis and a host of developmental disabilities, and she also takes care of this guy’s mom, whose house they lived in (and she and the kid still live there). So this woman is taking care of a child and an elderly woman all day, every day. Senor Shorty gets home and demands that she make herself more available for sex. She doesn’t make it happen, and he starts screwing around on her. He also controls her money and transportation. Classic abusive move right there.

Besides being a shit to his ex, Senor Shorty also bullies his 12-year-old. Because the kid has sensory issues, he has a hard time standing and peeing. So I found out this guy has been calling him a mama’s boy and telling the ex she’s doing a bad job of raising him. But this guy lives in my state, and these two live in New York. He tells everyone else this kid is his mini version, but he’s a total dick to the kid and the ex. I can’t convince Senor Shorty to stop bullying his kid. He thinks that he’s a great dad because he says he is. Of course, his actions say otherwise.

He says he “fell in love” with another woman and he got her pregnant while he was still with girlfriend #1, which resulted in his second son. He definitely favors Kid #2, 5 years old, because the little one misses him terribly and tells him so. Kid #2 is also in New York, though far away from Kid #1. Senor Shorty has given him very expensive gifts to make up for his absence, which Kid #2 really doesn’t want any part of. He just wants his dad. Of course, Senor Shorty cheated on this woman too, and punished her by taking away her transportation and controlling her money. It’s a common theme.

So, this guy. Within a week and a half of agreeing to date exclusively, he cheated on me. He tried to blame me for being hurt, saying it was my imagination, and he never said anything about dating me. I’m just gonna leave this screen shot right here.
Cheating1

I swear like a truck driver on the regular anyway, but I tore him a new asshole.

After a while, because when he’s not lying or manipulating, we can get along decently well, we decided to try friendship. The lines got blurred a few times and we did have sex, but it wasn’t a regular thing – maybe two more times at most over the span of five months? Anyway, I told Senor Shorty that I would help him get his life on track, and it would be better for the next woman. I meant it too. And his life is better, when he does things the right way.

But it always drove me fucking nuts whenever I’d catch him in a lie (which was every day, big and small). Like when he insisted he didn’t watch TV. We were talking about his budget, and he has this very fancy laptop that he only knows how to turn on and off. He doesn’t even know what an address bar is. I was telling him he didn’t need to buy a TV for his little studio apartment, he could just watch his laptop, and after I explained everything he agreed. Trust me when I say that he didn’t even have enough money to buy toilet paper. A couple of months later he was complaining about the fact that he was still paying off a TV that he didn’t even have for a week. I asked him to repeat himself and then told him I didn’t understand. I realized that he had been lying and that he had in fact gotten a TV and he immediately broke it – but it wasn’t his fault!!!! Oh god, just wait. He had put up a little shelf over his head and the bed, and put a 55″ TV on the shelf, that he bought on installment payments. But he just put it the shelf in the drywall. He didn’t look for studs in the wall. Basically, the shelf just peeled off the wall like an orange peel. So it was the shelf’s fault, it was the TV’s fault, how was he supposed to know that there was a right way to put it up? Now he’s going to be paying those installments for forever, because he doesn’t have enough cash to pay off what he owes. 

This guy decided he needed to sell this brand new iPhone he had no business buying in the first place because he couldn’t afford it. He told me he was going to be paying off the bill. Of course, he didn’t. He texted me in a panic saying that he got a notice stating that the phone was going to be disconnected and the buyers were upset. So I was concerned. I said, “So you sold the phone, and you had no intention of paying off the phone?” He said he didn’t know the phone company was going to expect to be paid. It was their fault the phone was cut off. Now he had to hurry and figure something out. He was looking for sympathy, but I shut that shit down real quick.

This guy. Senor Shorty goes through jobs like candy. It’s always the employer’s fault. He was getting one new job a month, or so it seemed, all the way through 2019.  His jobs are based on road and highway travel, and he some has very specific skills. It’s their fault that he can’t stay on budget if they pay every other week instead of every week, though. Nevermind that it’s the same pay, and the taxes work out the same. He doesn’t know how to budget. He blows the money if it is in his account for too long. He has told me this is the first time in his life he has been in financial trouble, but I think that’s a lie too. He’s only a year older than me, so he’s been old enough to work for 28 years. He’s been fucking up his bills for decades.

The lying is exhausting. Whenever I caught him lying, he would tell me it was just his personality flaw and I had to be okay with it. 

Last week, I had enough. He was posting high school, feeling-bad-for-himself-shit. We’re smack in the middle of this virus and he’s whining and crying on Facebook about how lonely he is and he wants to “find a woman he can trust, who is beautiful, who will cook and clean for him and make him feel special.” First of all, no one should be dating right now. Second of all, no woman should be signing up to be his slave. He just wants someone to control. Boy, did that post ever put me over the edge. And why the fuck would he demand someone he can trust, when absolutely no one can trust him? He has cheated on every single woman he has dated for the last two decades.

My response was, “All a woman wants is a guy who won’t fuck around or expect her to be a sex slave, have no life, and perform like a porno star while he lays back like a lazy ass pillow princess.” Which, by the way, describes him nearly perfectly. The other parts I haven’t told you is that he’s the worst kisser ever (he just sticks his tongue out like a dead fish), he’s a premature ejaculator, he doesn’t know anything about female anatomy, and he’s very rough in a not-fun way (he tore the skin under my boobs, took about 10 days for me to heal). This relationship was not destined for long term anyway. I tried to get him to discuss with me what he enjoyed about sex, and he couldn’t say one word. Then he said that I clammed up and it was funny. Talk about gaslighting! He was unable to tell me one single thing he liked. The last time that happened, the guy ended up coming out as gay a short time later. 

I finally told him to clean up his shit and stop claiming to be a good guy while he was cheating on everyone he dated. I knew there were other women after me and he was screwing around on them too. One of his jerky friends piped up and said he should “run, because it was obvious [I] was bitter.” Not about him dating other women, believe me. I just want him to not keep doing this shit and then feeling sorry for himself, so that was my response. So that got me unfriended on Facebook. Boo hoo. Good luck to whomever is next. He loves to dump his shit on you and then say that you won’t ever get close to him – meaning he doesn’t want to hear about you or support you, he only wants to talk about himself. (Pro tip: at least you don’t have to do a marathon BJ session ever.) 

Also, he wants to get a penis implant to make his penis larger. He thinks it will make sex better for him. He doesn’t care if it will for whomever is having sex with him. I asked him if he thought it would change his sensation, and he said no, but he still wanted it. And if it isn’t happening to his penis, he isn’t interested. 

I definitely should have vetted him better before jumping into a relationship. That’s on me. Sometimes I am blinded by the promise of fun and adventure. I’ve changed from my 20’s, though, and don’t let things drag on for years.

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

Innovation and “The Bleeding Edge”

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

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

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

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

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

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

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

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

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

The Great Debate

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

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

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

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

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

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

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

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

Fuck that.

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

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

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

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

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

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

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

Unhooked Generation – The Book

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

Unhooked Generation by Jillian Straus

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

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

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

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

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

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

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

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

 

Save The Date

Statistically, Minnesota is one of the worst or the worst state in the U.S. when it comes to wait times for disability processing. I didn’t know this when I relocated from Arizona to Minnesota to try to figure out what was going on with my body. This article from the Minneapolis Star Tribune states the average wait time is around 570 days from filing to have a judicial review. I just got confirmation that my hearing is set for March 28th, which will put me at about 770 days of filing the appeal (and almost 3 years to the day of filing the initial claim of disability). The back log just keeps getting worse.

I’m not sure I would have done this any other way. As horrible as it has been with trying to get doctors to take care of me in Minnesota, I did finally get three diagnoses that I have been missing for years in addition to what I already knew. I forget what my count was when I entered the state, but I’ve seen 64 doctors since July of 2010. This has not been an easy process. There is no clear path.

Thankfully my allergist has already agreed to fill out paperwork for my hearing, and my counselor has as well. I will be meeting with my primary care doctor and pain doctor next month to ask the same from them. I’ve been rejected by every neurologist and neurosurgeon in the area as well as banned in writing by the Mayo, and I can’t go out of state because I’m on Medicaid so it’s not allowed, so I’m not quite sure how that is going to be looked upon by the judge. There’s absolutely nothing I can do about that.

One incredible resource I wish I had stumbled upon before I started this process but am eternally grateful for is the blog How To Get On. There are sooooooooo many links/ideas/resources/testimonials that it sometimes boggles my mind, and I really can’t imagine how many man hours it took her to put it together. It’s unfortunate that the author sometimes gets reported and blocked by Facebook for either posting “too much” (seriously??) or for questionable posts (again – say what??), so we have to keep it circulating so as many people as possible benefit from its content.

Ladies First

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

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

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

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

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

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

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

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

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

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

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

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

Oh Ye Of Little Patience

Well-meaning people direct me to online support groups all of the time. Why don’t they work for me? Because I’m a snob.

A couple of days ago, I was summoned across the street to my sister’s place of business, because one of her co-workers knew an artist’s husband very recently had had brain surgery, and thought it might be beneficial for us to visit. As luck would have it, I had just finished showering and slapping on some makeup, so it wasn’t a big deal to finish getting my clothes and wig on to hobble across the street. When I walked in the door, I immediately recognized the woman. We had briefly visited during a previous show at the gallery. She and her husband were very pleased with the surgeon and her husband’s recovery, so I got the name of that doctor and another from her.

However, she looked over the top of her glasses at me and started with, Have you gone to a chiropractor? Yes, I explained, many times, and they did absolutely nothing for me. She wanted to know if I had gone to an herbalist. Yes, again, I sighed wearily, I had, and I’m taking supplements out the wazoo, because I need to, because my diet is very restricted. But they don’t make me better. My issue is mechanical and I need surgery. Then she wanted to know if I had tried the Chinese herbalists next door. I held up my hand and said that I’m very good at researching and am 1 to 7 years ahead of everyone else’s suggestions, so there’s no need to make suggestions. Then she moved to food. Was I juicingI really needed to juice everything! I said no. She started listing everything I should be eating, so I started cutting her off, telling her that each item caused a release of histamines, so it was actually dangerous for me. (Plus, with the few things I can still eat, why would I juice??? I get so little fiber now, and juicing removes most of the fiber.) Did I try an accupuncturistAgain, yes, and they did nothing for me. I know, I know, hard to believe.

God, I hate getting advice, especially when I don’t say, “Give me advice, I have no idea what to do or where to look.” She did write down the name of her otolaryngologist surgeon, whose specialty is cancer tumors of the head and neck. I’m still going to contact him. My tumor is not cancerous and he may not want to deal with it because it will probably grow back, but it’s worth asking him. However, I may be blacklisted because of my negative encounters with three other doctors within the same university system who said my problems were psychosomatic.

So, back to support groups: I hate them. I also can’t keep my mouth shut. One week, someone posted something about how she wished our rare disease doctor would team up with another doctor who researches the same disease. Unfortunately, the other doctor doesn’t have a license, so he can’t see other patients. I pointed this out. She said fine, then everyone needs to take care of themselves and stop smoking so they’re not on oxygen. That really pissed me off because the majority of us in the group can barely eat any foods safely because we’re always dealing with hives, have a really hard time finding medicines that don’t cause hives/asthma/anaphylaxis, and don’t smoke. I’m fucking allergic to smoke. I told her she was lecturing the wrong group. Other people got pissed off too. But then another person singled me out and told me to tone it down, and then it just went downhill from there. I was told that I should have just kept scrolling if I didn’t like what I saw. Then the original poster said she didn’t know that doctors needed licenses and not everyone knows that. I got so angry that I said that the leading doctor in this field most likely already considered the option of teaming up with other leaders, but they were in situations he was trying to get away from, so it was a moot point, and we should use common sense.

I admit it, I’m a snob. (For some reason, the woman who was trolling me told me that I was going off on a tangent because of that last remark. I told her that there was nothing that I was saying that was off topic, and I was responding to everything she and the OP were saying. I don’t think she understood what “tangent” meant.)

I’ve talked about this with my counselor. She agrees with me that a group setting isn’t what suits me best. I tend to steamroll people. Just today, someone in a group asked, “How many of you have NOT had _______?” and a bunch of people said “I didn’t,” but then a bunch of other people said, “Oh, I did, and it was like this and this and that.” So I wrote a message saying, “So, I thought this was about people who didn’t?” I got a reply that basically said that people wanted to share no matter what the question was.

Why don’t those fuckers write their own blogs if they’ve got so much to share?