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.]

Protected: Why Are You Still Single?

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Exhaling

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

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

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

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

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

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

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

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

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

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

Did I Ask You?

One of my fellow rare disease/chronic illness warriors/sufferers posted a thread on Twitter tonight. She’s quite well known because her condition is very unusual and obvious, but she doesn’t shy away from the camera or public speaking engagements. Her post tonight detailed an eye doctor visit that was made all the more difficult because 1) The eye doctor googled her condition rather than talking to her directly about it – and she is a much more knowledgeable source than Google; 2) The eye doctor left the light shining in her retina while he took a personal call, after finding out that she is extremely light sensitive because of her condition. 

Her post had to do with the appalling way that she was treated. As each of us who have chronic and rare diseases either have done or would like to do, she had some choice words for the doctors following her as pointers on how NOT to treat rare disease patients. At no point did she ever say, “Gosh, I have no idea what to do. I don’t know who to talk to about this or how to go through the proper channels [in Australia] to file a complaint.” There wouldn’t be any reason for her to do that. She’s lived with this condition all of her life and she is actually a very vocal and active advocate.

But of course, there’s some asshole who decided to announce that she should file a complaint. 

No. Shit. Since the original poster wrapped up the thread by saying that she confronted the doctor and quite forcefully said that the rare disease patient is the best source, and a light sensitive patient shouldn’t be left in front of the light scope while a personal call is taken, and she would be following up with the office, and she just looked forward to trying to relax after being in a lot of pain, I responded. I said, “It’s okay – she knows how to handle bad appointments. She’s had this condition her whole life. She’s an advocate and speaks out often.” In other words, go fuck yourself.

Also recently, a young woman ended up in respiratory failure and was in a medically induced coma and on a respirator. She lost days of her life. When I say young, I mean young. Her significant other has been updating us and has been an absolute rock, but they are both scared and worried and facing big changes. Wouldn’t you know it, in the middle of the updates, I see something about, “Can you guys not offer advice, please?” She’s also a rare disease patient with some of the same stuff I have, but some is different, and I know some asshole is telling her that she needs to do yoga or chew on bark and vitamins from the Himalayas or something. So to whomever is sending her unsolicited advice, fuck you too.

Why does this get me so worked up? I was always a sick kid who grew up to be a sick adult. I became really sick in 2010 and it has been a mystery that has been mine alone to solve; no one has traveled with me to see 65 doctors, or see me through all 10 surgeries. There have been a few people who have helped to fill in some gaps, but they have been sparse. I know what I’m doing. I am educating doctors and nurses and physical therapists as I go along. I teach people how to maneuver through insurance. I help people search for doctors – even when there’s a few thousand miles between us.

I have never said I don’t know what to do, I don’t know who to call, I don’t know where to look, I don’t know where to go, I don’t know what to eat, I don’t know what to take, I don’t know what I like, I don’t know what’s best for me. And though I am currently well below my natural quota of 8 doctors, I know how to care for myself.

The next person who says, “Oh, it must be the acidity” after I tell them I can’t eat pineapple because I’m allergic to it, I’m going to throat punch them. Fuck them too. And fuck anyone who gives me unsolicited advice. I’m so over it and you have been warned. This video is much nicer about it, of course.

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.

Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
IMG_20171101_111839_548
One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

I Know You Don’t Mean It

After I told the Go Stand In The Corner guy that I didn’t want to be his fantasy chat friend on Fet, he still tried to draw me in with more messages. So in the vein of Lin-Manuel, no means no means no means no means no…….well, anyway.

[Break for making arrangements to get the compounded medication to control my hives. I have to try one week of pills to see if I’m going to be allergic to the vegetable-based capsule they use for the powder. Total for 14 pills: $38. Not covered by Medicaid.]

Then I get another gem in my FetLife inbox, completely out of the blue, from a guy I’ve never had any contact with before in a town that is about an hour and a half south of Minneapolis:

Hey there beautiful. I just thought I would send you a text and tell you that you’re one great looking woman. In my eyes bald women are beautiful as I am bald myself. I know you say that you have health problems right now but I still wish that we could talk and hopefully meet as I will come to you as long as you let me. You seem like the type of woman that knows what she wants and I’m the type of guy that also knows what I want and that is you. I’m a gentleman that works too much but also enjoys beautiful women As You Are. I’m serious about meeting you as I would like to meet you now today tomorrow Sunday soon as possible as I don’t want no one else to steal you away from me. Give me a shout out if you’re interested in talking and we can go from there.

So, this is what my profile says:

I relocated from Phoenix back to my home state to be closer to family so they can take care of me during a serious health crisis. Feel free to message me but be aware that I cannot do any socializing of any variety right now. Respect my boundaries.

Now, is there anything in there that says, “Except you, guy. You know absolutely nothing about me including whether I even drink coffee but you know you’re going to make me happy for the rest of my life because you want to do dirty things to my bald head.”????

Send Up The Flares

It has been a really long time since I’ve logged into my FetLife profile. I didn’t realize it, but I had three messages waiting for me – one from about two months ago, another from four months ago, and the third from a full year prior. The one from a year ago I let slide. I mean, I did put in my profile that I don’t log on and that I’m going through a health crisis, and I can’t “play” in any way, shape or form. I did make a small adjustment to my profile, which alerted my friends and RELEASED THE KRACKEN.

One former spank party friend wished me well and told me that he had heard I moved to California. I replied that that wasn’t the case, I’m actually in Minnesota, taking care of some serious stuff. Then the guy who sent me a message four months ago hit me up again, this time with his instant message name and phone number. I replied that I was not looking to do ANYTHING, but that didn’t deter him; he said he would be willing to “give me a massage if I needed it.” Um, right, do bedridden women usually fall for that?

Then another guy whom I’ve played with at spank parties in Arizona hit me up to let me know he was actually currently in my city for work, and was I interested in getting together for a session? I groaned. This guy…he’s very, very, VERY focused on his kink. I like to have fun. It’s not the be-all, end-all thing for me. He carries a backpack with all of his tools. He actually has two pictures of me (not showing my face, only my red ass) on his profile. He’s totally into role playing, having me stand in the corner, punishment, the whole bit.

So I turned him down, because there is no fucking way I can do anything, including hang upside down, or put my stomach over his knees. The thought makes me cringe. I would be walking like a cat just getting out of anesthesia. And it would be painful, and not in a good way. So he asked me if I could be his chat buddy while he’s traveling for work: talk to him about discipline, spanking, corner time, paddling, etc. I’m rolling this around in my head, and first of all, this requires research. And time. And creativity. Probably some motherfucking Skype. A hairbrush (because wouldn’t you know it, I’m bald). It’s all I can do to peel myself out of bed to make food for dinner every day, and this guy wants me to put a lot of effort into keeping him happy and satisfied.

It takes a lot of effort to turn him down and I know I’m going to have to repeat myself. It’s not my first time. And there it is: “I’m traveling a lot and I don’t get the opportunity to do what I need to do.” So I have to drive it home for him: I’ve got serious stuff going on, I’ve got scar tissue in my brain and I have to lay flat 20-22 hours every day, I’m in pain, I can’t get another operation right now. His reply: “Okay, just know that you’re missed.” BTW, he has a wife and two little children at home. She knows about his kink and his attendance at the spank parties; I don’t know what else she knows because the travel job is news to me – but then again, we were never close.

This is also not the first time I’ve had to turn him down since I started having shunt failures. His kink always comes first. It’s fucking exhausting, man. But if y’all are interested in a pen pal, hit me up.

In other news, for about three weeks I’ve been dealing with persistent hives on a daily basis. I wasn’t quite sure what to do because of losing my rare disease doctor. However, I received a message from him this morning indicating that he put a script through to the compounding pharmacy for me that will (hopefully) help with my hives as a sort of last hurrah while I try to find another doctor. I also got the names of two doctors in the area who would be willing to communicate with him. The problem is that one is old as dirt and so probably won’t be practicing much longer, and the other one isn’t much younger and has a bad reputation for being a raging bitch. I need to sacrifice a chicken and do a dance around a fire or something.

Also today, I received a call back from the neurosurgeon’s office whom I originally saw two years ago when I relocated here from Phoenix. I called him as a last-ditch effort to try to be seen by him or someone else in the practice and get away from my current neurologist. She has been telling me that I don’t understand my symptoms – kind of along the same lines of telling me that even though I stubbed my toe, it’s really my nose that is hurting, ridiculous like that. So this neurosurgeon was kind enough to order a repeat lumbar puncture, which I’ve been begging for since December 2016. The lumbar puncture he ordered is “high volume,” meaning they will take at least four vials of cerebrospinal fluid. They will measure the opening pressure (like you would when you check the pressure on your vehicle’s tires) and then they will send the vials of fluid for testing of the proteins and check for bacteria. Getting this done will also relieve my symptoms for a few hours. He also agreed with me on my choice of neurologists within his group. 

My current neurologist’s justification for not ordering a current LP is this: Usually slit ventricles means that you are overdraining. I pointed out to her that my shunt failed 17 days after surgery in 2015 so I’ve got high pressure, and she witnessed my shunt opening up for about 30 seconds during my last appointment, and my paralysis went away, then came back. Then we read scientific journal articles together about adults with slit ventricles and shunt failures and symptoms. Then she said it only happened to some adults. I asked her why I couldn’t be included in that “some.” She told me it didn’t count because I wasn’t throwing up, I was only nauseated.

Fuck that. Spinal tap, here I come.