bed rest

It’s Hard Out Here For A Crip

Posted on by akiwifreund

[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

Posted on by akiwifreund

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.
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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.

Ushering Out 2018

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Let’s Play Family Feud

Posted on by akiwifreund

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?

We’re Not Friends

Posted on by akiwifreund

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?

Posted on by akiwifreund
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

Posted on by akiwifreund

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!

Exhaling

Posted on by akiwifreund

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.

Super Blood Moon Drawing Blood

Posted on by akiwifreund

In 1993 to 1995, I worked at a regional hospital in the admissions area, and we always knew when it was a full moon. On any given day we would have one or two women during regular business hours coming in (not through the ER unless it was after hours) in full labor. When the full moon hit, the number always jumped up to about nine. If we ever forgot or wondered for a second, we checked the calendar and then it would click: oh yeah, the full moon. Every time. Don’t ever doubt that the moon has a big influence on happenings on Earth, and it’s not just tides and births.

I was at a social gathering this Tuesday the 30th of January. There were only six of us, but I only knew two others and three were strangers. One person came from her workplace and was wearing her work uniform and I was familiar with the clinic where she works – it’s quite large, and I used to have the majority of my doctors there. One of the young women sitting next to me piped up and said, “Oh, I used to work there, in ophthalmology!”

I immediately tensed up. “Do you mean you used to work with Dr. X?”

“Yes! I loved working with him, he was so laid back,” she said.

Now I’m no good when it comes to putting out a poker face. I also didn’t feel like playing Minnesota nice either. I said, “He made my life a living hell. He was the first doctor I saw there, and he said that my condition was psychogenic [meaning it is psychosomatic], and all of the doctors after that saw what he wrote so they wrote the same thing in my chart, and now no one will treat me. I actually have scans showing that my brain has collapsed and I’ve had a clogged shunt for almost three years.”

She nodded and said cheerfully, “Well, yeah, he actually writes that it’s psychosomatic or psychogenic in almost everyone’s file. But he’s nice to work for as a boss, he doesn’t get crabby often.”

When I say she was young, I mean early to mid-20’s. She wasn’t affected at all by me telling her that his notes basically ruined my life and chances for getting treated properly. I also haven’t had any money (including and especially disability) coming in for three years. I also wasn’t successful in filing a complaint with the Minnesota Board of Health – they said I didn’t have sufficient evidence. But now I’m wondering if I’m the only one who has complained about what he put in my chart because it was so obviously wrong, and I backed it up with 100+ pages of medical records.

This Dr. X is Harvard-educated, but you know, even Harvard has to have someone who is the shittiest out of the bunch. I’m going to go out on a limb and say he’s the one.

This is also why it’s important to stay diligent about your own care. I realize that anger makes people uncomfortable, but in my case, it’s legitimate. 

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

When I returned home from this gathering, I was taking my nighttime meds and catching up with my emails, and I saw one pop up in my inbox. I dreaded opening it. It was from a researcher I had written to a week ago to give her an update on my situation. I had met her in 2016 at the hydrocephalus conference that just happened to be in Minneapolis. I wasn’t sure that I could handle more disappointment, but after delaying it for a bit, I braced myself and checked her reply.

I had explained that I was diagnosed with mast cell activation syndrome, and that my Phoenix neurosurgeon had noted that my dura was extra tough when he started doing surgeries in my head rather than my back, so my theory was that my CSF couldn’t drain properly and that it was probably because of the mast cell degranulation. I already know the shunt failures are because of the mast cell action.

Her reply was very encouraging. She thought that I was absolutely on the right track, and she wants to work me into her research. A lot of it already revolves around inflammation; I consistently have astronomical platelet counts (that have already been checked via a bone marrow biopsy), but she hasn’t studied mast cells and I would be the perfect candidate since I had problems before the shunts and with the shunts.

I tend to be a pragmatic person, which sometimes leads to awkwardness in emotional situations. But I’m more than happy to sacrifice my body at the altar of science if it means that some knowledge is gained and others are helped. I’ve become a broken record in the online MCAS groups because I’ve talked about the CSF and shunt issues so many times, but every time I do, more people step forward and say that they have had some mysterious problems too, even if they are not exactly like mine. For a long time doctors have said that only fat, middle-aged women have pseudotumor cerebri/ideopathic intracranial hypertension, but I’m beginning to suspect that mast cell activation syndrome might be playing a bigger part than they realize because of how many people in the groups have stepped forward. 

So after this low low and this high high, the super blue blood moon arrived in the early morning hours Wednesday. The moon has ruled my Earth. I feel a little bit lighter now.