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.

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.]

I Don’t Recommend It

Disclaimer: This post contains very descriptive accounts of doctor appointments.

I’ve had quite a long break from posting. My right hand is still giving me quite a bit of trouble and likely will for the rest of my life; the diagnosis is CRPS (complex regional pain syndrome). I’m in the 10% of patients who haven’t experienced a trauma or surgery and the disease developed spontaneously. I go to occupational therapy twice a week, which includes such strange things as identifying right hands and left hands in flash cards and hiding my right hand behind a mirror while I perform tasks with my healthy left hand and trick my brain into thinking it’s my right hand doing them. The idea is to try to keep my brain from shutting down the right side of my body. On really bad days, even air hurts when it blows across my hand. It’s a really fucked up disease.

For the past two months I have also been getting treatments for my hidradenitis suppurativa – acronym of HS (otherwise known as horseshit). It is known as the worst (strictly) dermatological disease, and normally it occurs in areas where skin touches skin. However, mine also appears on my face, neck and back of my head. You’re welcome to look up this condition if you aren’t familiar with it, but every patient is different. It’s an autoimmune condition that causes inflammation and tunnels of infection and lots of scarring. My worst area by far is in my groin. I have stage II because it’s in two or more areas of my body and I’m getting some bigger tracts. Every day I have between 20 and 50 infections. The bacteria is generally strep bacteria that forms anaerobically under the skin in tunnels that can be as small as a grain of rice or as big as a grapefruit. Sometimes I can’t walk.

My HS wasn’t too bad until I started on Humira shots, which I was taking for 15 months. I was allergic to those, and it actually accelerated the disease for me, which I am now hearing from a lot of patients, especially stage I and II. From what I can tell, the medication is actually accelerating the disease for about 30% of patients, not helping or hurting about 40%, and helping about 30%, and the majority of those helped are stage III, the worst stage.

So the first treatment was a topical acid I had to wear for 24 hours, and then sit under a blue light. I had a male nurse who asked if I preferred a female nurse, but I told him fuck it, nearly everyone has seen my ass by now. He didn’t know the proper name for stirrups. I got propped up in the stirrups, and then he set an old-fashioned tap bell beside me, saying, “If it gets to be too much, you can ring this and I’ll come and turn this off, but try to get through it.” I also got a dollar store hand fan, I think to make me feel better psychologically. He’s trying to be all nice and polite while my girl parts are all on display and ready to be cooked, and I told him, “Look, I’m going to sing. I have a feeling this is going to hurt. I have to sing.” He said that was fine and stepped out after turning on the timer, automatically 16 minutes.

So, the first minute was fine. No big deal. Dollar store fan? Who needs that? Not me!

By minute two, I felt like everyone had turned on their curling irons and then set them on my girl parts. Jesus god. What to sing?

At minute four, the nurse came back in and asked how I was doing. Somehow Satan had slipped into my vocal cords and I told him I was done. I can tap out, right? He said almost everyone didn’t notice as much when they got past minute seven. FINE. FINE. THREE MORE MINUTES AND IT WON’T BE A BIG DEAL.

He totally lied to me. Fuck, fuckity fuck fuck. Singing, still singing. I can’t remember what.

He came back in at ten minutes. Very cheerful. He must have felt my look of betrayal and mistrust. He told me that I had made it this far, I shouldn’t tap out now.

Still really hot. Fire of a thousand suns. The dollar store fan is just making everything feel like I’m having sparks from welding fall on my delicate bits. How do people do this to their faces? Still singing. Could have been the Star Spangled Banner for all I remember.

Finally the blue light went dead and the very cheerful nurse came back in. Turkey’s done! He got everything put away and let me down off the stirrups, but it was so fucking painful. I told him he gave me fire crotch. He laughed but stayed more than arm’s length away.

This all went faster than was anticipated, so I had to wait a few hours for my transportation (we can’t make changes day of). Sitting was torture. Oh. My. God. I basically had a 2nd degree burn and it felt like I took a brillo pad to it besides. I had to go into the bathroom to pat cold water on it once because oh my god. And I was still 35 miles from home. That was a really uncomfortable ride home. I had an ice pack on my goodies for 3 days. After going through all that, I was told I wouldn’t know if it was helpful until 3-4 weeks after the procedure.

Oh, but we’re not done.

I don’t think the blue light worked. I contacted my dermatologist in St. Paul because she had recommended laser sessions right before I moved, but I never got the chance. I had to fly up to see another doctor, so I scheduled an appointment with her as well to get treated.

Unfortunately, anything in the Lidocaine/Novocaine family doesn’t work on me, or at least, not very well. They had a topical for me that sat for about 20 minutes that was a combination of meds, but unfortunately, it didn’t really do a whole lot.

They didn’t have enough goggles for everyone, so I had stickers over my eyes. The first laser basically acts as an aerator, poking a bunch of holes in my skin. My doc thought it would be the more painful of the two. But no, it was the second one that made me swear. A LOT. The second one was like a light saber. Or some kind of a hot knife. There may have been a patient in the room next to mine who heard way more than they ever wanted to.

The doc and nurse were worried that I would be in pain for a few days after, but honestly I was okay as soon as those damned lasers stopped searing my skin. I didn’t get the same fire crotch that I did with the blue light.

The doctor indicated that if I wanted to try another session, I could book at another office where they had nitrous. Yes, please! I had that for my dental work when I was a kiddo, I know at least that will get some of me numb(er). And I do want another session because after only one week my lesions are smaller and I’m not getting new ones. It’s a motherfucking miracle.

I really, truly resent having to go through this. None of this was a problem before I took the Humira injections. I have had to completely change my wardrobe, buy tons of medical supplies, and halt my sex life. Everything is made even harder because I only have one fully functional hand.

Ushering Out 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Sugar and Spice and…NO.

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

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

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

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

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

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

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

Let’s Play Family Feud

This week has been really tough.

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

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

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

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

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

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

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

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

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

Secrets and Lies

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

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

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

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

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

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

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

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

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

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

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

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

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