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.

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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

Why Are You Still Single?

This is the dreaded question. What it really means is, why are you unlikable or unlovable?

Today, I was asked this question by a man who was also single. I answered like I would have in my former life, pre-brain surgeries: “I’ve raised a lot of men. They go on to marry the women after me. By that time, I can’t stand to look at them.”

But there’s a lot more to this conversation. The man asking me was a cabbie I had previously gotten a ride from once before, who told me a horrible and sad story about how he was driving a dump truck in New York City and a Chinese food delivery person ran a red light and put himself under the cabbie’s dump truck. The cabbie stopped his humongous truck as quickly as he could, but of course, it took far too long and the delivery person was dragged some distance. The cabbie was so traumatized that every time he drove over a bump he stopped his vehicle and got out to look under it. The food delivery driver died almost instantly.

The cabbie also revealed to me that when he left New York to start his life over, he left his kids and two divorces behind. He had to get away from all of the landmarks and reminders, and as it turns out, his second wife was cheating on him as well. He needed to start his life over with a clean slate. 

When I saw him today, I asked how he was doing and if he was able to spend time with his kids on his trip back home. We talked about how hard it was for him to be away from them, harder still to leave them behind and to come back here to return to work and deal with feelings of isolation.

I know from our previous conversation that he is a firm believer that the man is the head of the household, and that women should bear children and stay at home with them and take care of them. I’m quite the opposite – my goal has always been to find a true partnership, where I don’t have to be responsible for the household plus my job plus keeping everything straight for my husband. When we pulled into my parking lot and we got done laughing because he scraped the bottom on the undercarriage on the parking marker, I didn’t do a very good job of fending off his thinly-veiled come-on line of “So, why are you still single?” while his voice suddenly dropped to a lower level.

My first thought is, isn’t it obvious? I mean, I walk with a cane. And I have to use a taxi that is designated for use by disabled people because I can’t drive myself. Those are just the obvious things. Sometimes I get Quasimodo eyes because of the facial paralysis. There’s other factors too that I don’t discuss with strangers, and that includes my complete lack of hair nearly anywhere (except my big toes right now – why couldn’t that be my eyelashes???), and my really, super painful infection tracts that I get in various areas of my body that is another autoimmune disease. I’m sure that the fact that I’m a demanding pain in the ass is cause for consideration too. 

If I didn’t have any scruples, I could have said, “Let’s do something.” He doesn’t know anyone here and has only lived in Phoenix since April. He could probably use a friend, maybe even a girlfriend who doesn’t take advantage of him and his willingness to pay for everything. If I didn’t have any scruples, I could probably explain a few things to him and he might say hey, that’s okay, let me help you, call me for anything. But I can’t do that. That’s not a partnership. That’s encouraging the same pattern for him. 

I’m also trying to change my own path and patterns. I don’t believe I’m unlovable. But I no longer want to say yes to men just because they show interest in me. (I’m still surprised when anyone signals they’re interested because that’s the furthest thing from my mind; sometimes all I’m thinking about is dodging dog poop to get to my front door.)

That cabbie and I have a lot of healing and growing to do.

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.

Innovation and “The Bleeding Edge”

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

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

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

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

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

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

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

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

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

We’re Not Friends

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

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

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

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

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

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

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

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

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

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

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

Are You Being Served?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It’s Gonna Be So Great

I’ve got all of $26.01 in my bank account right now. That’s all that’s left from the past three years, including selling my house and car and wiping out all of my savings to survive while going through the process of filing for disability and getting denied multiple times and finally getting approved.

Right now, in my tiny apartment, I’m going through all of my records and shredding duplicates and old unneeded receipts so I don’t haul anything unnecessary across state lines. It’s a daunting task. My belongings are half packed and I’ve only stopped because I’ve run out of room – I still need to be able to walk through my space. But as I’m going through everything, page by page, I’ve come across all of my applications for assistance and housing.

Two years ago I started applying to different locations around the Minneapolis/St. Paul area. Some were through specific cities; some were through counties. All of my applications were for subsidized housing, meaning I was not applying for free housing at any point, I still expected to pay a portion, so the wait should have been considerably less. When I applied through the City of St. Paul, I was told “three to six months, tops.” That was 14 months ago.

Sometimes I fantasized about what it would be like to be able to have more than $100 for groceries in a month, if I could just get in one of those apartments. I have a small credit card that has gotten a workout.

I contacted local legislators to see if they could lend a hand with housing. After all, I’m disabled, and burning through all of my resources, and not able to live with anyone because of my severe allergies (because everyone has pets). The response I got from my representatives was “Too bad.” I’m small potatoes.

But here’s the deal: About 19 percent of the American population is disabled, with about half of that amount severely disabled (I’m in that half). That really isn’t small potatoes. That statistic doesn’t say that disabled means old, or with cancer, or any other stereotype. So what happens if you ignore 1/5 of the population? And why aren’t we demanding more of our lawmakers when it comes to making and enforcing laws? We can do things like make sure that a certain percentage of new or reclaimed housing is made available to lower income and/or disabled citizens rather than just allowing the most expensive developments to go up. There doesn’t have to be a huge housing bubble; it’s all an illusion, just like the diamond market.

As part of my move to Arizona, where I have a rent-capped apartment waiting for me, I have to write letters to all of these housing authorities to tell them to remove me from their waiting lists. I’m also going to tell one of them not to lie about the wait time, because it certainly doesn’t help with having to plan finances. But I’m also going to write to the Minnesota legislators, including a few who are running for offices different from what they hold now and remind them not to ignore the disabled or the housing crisis. 

Please enjoy this song, “Wedding Day,” from Rosie Thomas. You will be startled by her speaking voice and then startled again by her singing voice – two very different sounds!