Minneapolis

Gender Bias: It’s Not Just for Work

Posted on by akiwifreund

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

How Much Do I Owe The Swear Jar This Time?

Posted on by akiwifreund

A couple of weeks ago I got the last of my fillings repaired as part of the bigger, year-long, multiple visits to the dentist that were caused by me clamping my jaw in my sleep because of the pain in my shoulder and abdomen. I also had to make sure that they marked in my chart that I had slit ventricle syndrome and the tumor because they love to tip me waaaaaaaaay back in the chair and it really messes with the pressure in my head.

There was a mixup with my appointment and they got me back much later than my start time, which caused me to have to call my transportation to pick me up later; unfortunately, transportation had to leave me until 2 hours after I was done, which caused the fluid to build up a lot, which means I was hella uncomfortable and my vision was cut down quite a bit. But before that, I had a weird/comical/maddening exchange with the staff in the back.

I require four times the amount of numbing medication because my sodium channels don’t process pain meds correctly. Both of the teeth we worked on were in my upper jaw, so I ended up being numb up to my forehead. When they sat me up after I was patched up, they told me I could walk to Walmart down the road (as if! No way am I giving them my money!). I said no. They said I could then walk somewhere else. I again said no. They asked me why. In the best way I could with a very numb tongue/lips, I said, “I can’t theecuz oth wuth wrong with ny vrane.” The assistant, who was none too bright, said, “WHAT’S WRONG WITH YOUR VEINS??” I said, “No. Ny vrane. Vrane.” And I pointed at my head. The assistant dentist asked what was wrong, and I said, “I can’t do anyfing vat vill nake ny vlood mressure go umph. I cood have a stroke and nigh.” The assistant dentist asked what the doctors were doing to help. I said, “I can’t fine anyvun who vill take ny case. I’n lergic to da shuns. I need to fine stuff I wone vee lergic to.”

Then the dental assistant piped up and said, “Well, I don’t blame the doctors. I’m sure they don’t want to feel bad if it doesn’t work out for you.”

I shot her a look and said, “I cood die wifout helf. Da pressoo keefs goin’ uf in ny head and if I can’t get sunfing in to work, it vill kill nee.”

Without hesitating, she said cheerfully, “Well, I can see both sides.” Like we’re debating whether to have fish or chicken, instead of whether or not it’s better to kick the bucket to spare doctors’ feelings. She stuck with her “too bad for you” attitude.

At the end of December, my case was referred to the top neurosurgeon in the Minneapolis/St. Paul area after it was discovered that my brain had literally collapsed under the pressure, as well as started growing a tumor from the scar tissue that was left in from a previous shunt that is now about the size of a quarter. I know he got the radiology report that listed all of my symptoms. I know he got the impressions from the neurologist because he seemed to answer her question about whether I’m overdraining.

His reply was that my brain was fine and the tumor was no big deal. He also said the shunt isn’t overdraining. Now I’m not allowed to see him either. 

Here’s the deal: I know I’m not overdraining. If I were, I wouldn’t have high opening pressures every time they do a lumbar puncture. The overdraining assumption is strictly my new neurologist’s misunderstanding of slit ventricle syndrome – she’s trying to make my symptoms fit, instead of paying attention to what’s going on. Second, the brain tissue around the shunt and the tumor is turning to jelly. This isn’t normal and it’s a big deal. Third, the tumor is causing measurable cognitive damage. Fourth, and I’ll show you pictures, but my ventricles disappeared, and my brain has literally collapsed.

mymriscreenshots

I have new insurance that started on February 1st that comes with an advocate and a care coordinator, so I’m waiting for them to contact me, which is the norm. I smell a lot of research in my future for trying to figure out what I can try for the next shunt system, and I’m not looking forward to it, but I also know no one else will do it but me.

Fake It ‘Til You Make It Out Of There Alive

Posted on by akiwifreund

A few minutes ago I was standing in the middle of my kitchen, trying to figure out if the married couple downstairs was fighting again, and whether I should reach for my phone. Last Saturday the husband, whom I have nicknamed The Leprechaun because he’s shorter than my 5’6″ height and sports a red beard, had a 3-hour meltdown. One of many, I’d like to point out. He rages. He hits the wall. He hits furniture. He may even hit his wife. I hear her crying all the time.

I notified the apartment managers the week they moved in, and they told me to call the cops. On Saturday, I did. I got tired of the screaming and my walls shaking. The cops came and went, and The Leprechaun took it upon himself to immediately knock on my door afterwards and demand that I talk to him about why it’s acceptable for him to be abusive. You see, he has a traumatic brain injury. You see, he can’t drive. You see, it’s none of my business if he makes his wife cry. I didn’t open my door. I simply put my headphones back in and eventually he went away.

I drafted a letter to the apartment managers. In it, I recapped what happened in the past, including The Leprechaun knocking on my door right before New Year’s because I had dropped a bottle of lotion on the floor, because it had “caused a huge ruckus” (like that’s the same as 15 hours of his screaming rage) – and by the way, I hadn’t opened my door to him that time either. I also indicated that he had knocked on my door and demanded we talk after the cops had left on Saturday. I was told that the managers were going to have a meeting with him as well as talk to their attorneys to find out how to handle him because he had a disability (traumatic brain injury from serving in the Navy) and they have to “accommodate” him – though I’m not sure why his TBI overrides my disabilities. Also, let’s face it: no one has ever called the cops on me for being violent and threatening, because I’m not.

I got a text from one of the managers Wednesday night that they were setting up a meeting with him Thursday morning. Fifteen minutes later, The Leprechaun knocked on my door again and demanded that I open the door and talk to him. I told him through the door that I wasn’t dressed to open the door (which was the truth – I was resting in bed), and he said very forcefully, “I’LL WAIT.” Then I said that I was also on the phone (which was true – I was talking to someone out of state, and that friend could hear the entire exchange). Eventually The Leprechaun went away again, but I had to text the manager and tell him what happened, and he told me to call the cops if The Leprechaun came back.

I know the meeting happened on Thursday morning. I heard The Leprechaun return back to the apartment because he slammed the door as hard as he could. I didn’t hear him start packing boxes though, so I have no idea what the verdict was. Looks like I’ll have to pursue that answer Monday.

But it seems silly that I had to point out to the apartment managers in my letter to them that I don’t condone spousal abuse, I am not okay with him retaliating against me, I’m not his wife, he doesn’t pay my rent, and it doesn’t say anywhere in my lease that I’m required to accept abuse from the tenant who lives in the basement apartment. So now I’m on alert and ready to call the cops. C’mon, Leprechaun, your box of Lucky Charms is gonna run out sooner or later.

This ties into another subject that I was discussing with a friend about why women fake orgasms. Specifically, why do women who are having a one-night stand fake orgasms. Mainly because there’s so many douchebags like The Leprechaun running around. The worst are the ones who like to proclaim that they’re nice. No really, they’re nice! But then get any of your bits naked around them and they’ll make your nipples bleed or tell you that you like anal sex, you just don’t know it, and they’re going to show you how right they are.

I actually had the privilege of talking this process of faking it through with a man who was willing to listen rather than becoming defensive or angry. Think about it; when you talk about having one night stands as a single woman, you get the pious lecture about how you don’t deserve anything nice because you gave a man your body for only one night, you dirty whore. No lecture for the other party, though. He did nothing worse than stick his dick in another hole. But I digress.

We talked about the various reasons why women fake orgasms. But there’s a specific reason that isn’t talked about much that comes up from time to time on first dates/first-time or only-time sexual encounters, and that is personal safety. Sometimes you don’t know that things are going to go badly until you are both naked and the fucker has stopped listening, and it dawns on you that he simply wants a porno show. His script is running and you had better perform. The light bulb goes on over your head.

Of course, some men love the whole resistance and crying thing. That’s not what I’m talking about. The guys who can’t tell if a woman is faking are the ones who rely solely on porn for the cues of orgasm: “Oh” sounds, clenched hands, clamped jaw (or maybe even gaping open, whatever your preference). They want to dig a hole to China through your clit. If you complain that the pressure hurts, they push your hands away, tell you that you should stop being shy or that you really like it, and wrench your legs back open after they have closed to protect your most tender flesh. Same for anything that they want to do to you rather than do with you.

The light goes on. You give him his show, make all the right noises, tell him he is king, and get the fuck out of there before he rips your skin any more or gives you additional bruises and you have excruciating pain every time you pee because the urine is passing over open wounds.

I’m just saying, it’s okay to fake it sometimes. There’s a lot of Leprechauns out there.

This Is Going To Sting A Little

Posted on by akiwifreund

My day started early – stupid early. I didn’t mean to, but I only got three hours of sleep because like with all other nights before big appointments, my anxiety skyrockets. My alarm was set to go off at 4:55 a.m. but I woke up at 2:35 a.m. I tossed and turned, and then out of habit my fingers found the spot on my left glute and pressed it and I wondered for the thousandth time if I should have it checked by the dermatologist because melanoma and squamous cell carcinoma run in my family and I never date anyone long enough to remember to ask that person to check the mystery spot on my ass that I can’t see myself. Then I checked Facebook and Twitter and Instagram and all of my email accounts. Then I put on a few terribly cheesy movies from Netflix but couldn’t make it past the first 10 minutes before giving up and searching for another one. Finally I turned off my alarm before it sounded and showered and readied myself for the day, and took my handful of morning medications.

The first appointment was at 7 a.m. with the nurse practitioner working with Dr. Afrin at the University of Minnesota; he is the granddaddy of mast cell activation disease and his patient log is backed up so much that he’s booked out one year in advance, so the NP is helping to do the follow-ups. It was our first meeting and it was after my initial follow-up had been postponed in favor of more testing, so I was already preparing myself for the absolute worst. After all, I have gotten the speech so many times: “I’m sorry, your tests are inconclusive, so I can’t continue seeing you.”

One of the first things the NP said to me was, “I have never seen a histamine level that high before.” We talked about a lot. She gave me about 15 pages from Dr. Afrin to read – and they are prose-heavy, so it’s going to take some time to go through everything. I’m going to have to do a lot of trial and titering up with the medications to see if I can figure out a dosage and frequency that works. He indicated that we are about a decade out from understanding more about the intricacies of MCAD. The bottom line is, I have it. He might be able to make my life more comfortable but there is no cure.

I talked to the NP about my feelings about sending part of my drainage catheter to the research scientist in MI (if she wants it) to see if mast cells are causing problems on the shunt – maybe that’s what’s causing problems for a lot of shunt patients? Also, the NP has no idea if resolving my histamine and inflammation issues with MCAD will actually make it easier for me to have a shunt inside of me. Also, she had no idea if that’s the reason I needed one in the first place. And because I’m still having a lot of issues brought on by the PTSD/anxiety/depression, I did cry in the appointment (like I do now in all appointments), but only once. All of the sudden towards the end of the appointment, the fluid moved down the shunt and both of my eyes spontaneously opened. She got up to get a light and checked my pupil reflexes, and remarked that she had never seen anything like it. I told her that I never had any warning but I knew that I was a magical number between air pressure, humidity and temp; after a few minutes, the shunt clogged and my eyelids drooped again and everything went back to being paralyzed.

After that appointment, I had to come home and meet with the supervisor from the organization that employed the woman who sent me the fire and brimstone craziness. We had to talk about a lot of different issues including trying to find housing for me (since I can’t live with anyone who has animals – my friends and relatives are all breathing big sighs of relief!) and the public housing list wait list is something like 1-3 years (I have no idea what I am going to do between now and then, though there is something I can apply for with the state of MN that is a status of disability that has nothing to do with money but does get me qualified for services and housing). We also talked about getting me help if and when I get shoulder surgery since I won’t be able to do things like haul around laundry.

This was the first time that I met with this person, and she was asking me to fill in some information about why I was having such a hard time with finding neurologists and neurosurgeons. Every time I have to talk about it, I immediately start crying – that’s what clued my therapist in to the fact that I’ve got PTSD – and it’s emotionally draining. I’ve stopped apologizing for getting upset. So I walked her through the Three Stooges at the U of M who completely sabotaged my case with the NIH Undiagnosed Diseases Network as well as Social Security Disability.

I was supposed to go to a social gathering tonight, but I called to cancel because I wouldn’t have gotten home before 10:30-11 p.m., and I have to get up stupid early tomorrow, around 4:45 a.m. again to see the orthopedic surgeon. I’m really fucking tired. I’m so tired that I’ve been sitting here in the same spot for about 4 or 5 hours and I just realized that I put my lounging dress on backwards (it’s got a scoop neck in the front and a deep “V” in the back) and I really can’t be bothered to fix it. Normally I would be a little mortified, but at this very moment, I do not care.

I think about how this is breast cancer awareness month. I think about how everyone understands the gravity of cancer. I think about how five days after one of my surgeries, someone told me I looked fine, and I probably didn’t need help.

I think about how I never knew it was possible to have a disease that couldn’t be diagnosed for this length of time, and that doctors could turn patients away.

I think about how it’s been 6 years and 3 months since I’ve gotten sick, and I may never know what the real culprit is – but it’s funny that my body kicked it into high gear just as MCAD was beginning to be identified. At least I have that label.

Oh, and the doctor put in my notes that I had a “stunningly good memory for the entirety of my history including specific dates for each event” but that my appearance is a “chronically ill-appearing woman who looks a bit older than her stated age….”

Ouch. I always am guessed to be 8-10 years younger, at least to my face.

Okay, OKAY, Cupid – Sheesh.

Posted on by akiwifreund

I received a message from one of my stalkers whose messages go directly to my spam folder on my phone. I somehow managed to open it in my sleep and it startled me wide awake when I saw it: “I left Minnesota.” Did I believe it? No. Because when I scrolled back further in the spam folder, I saw various messages from him desperately trying numerous tactics to get my attention. “Oh, hey, the sky is blue, so I thought of you.” Yeah, buddy, nice try.

I haven’t logged onto OKCupid since March, so it took me a few tries to get the right username/password combo. I finally got in and found this jackass’s profile, made sure he was still blocked, then tried to figure out if he truly left the state, but everything looked the same. So I really can’t tell. That means I’m going to be looking over my shoulder for a while still. His “I won’t take no for an answer” attitude has gone on for almost a full year now.

While I was on, I decided to block the profile of the most recent ex, since he also has stalking tendencies – he admitted that he was still trying to “get” a friend to love him after five years of friendship and one failed date and that she was “the woman of his dreams.” The birthday gift to me was what he had told me he was going to give to her, which was a box he had picked out from a thrift store and write out qualities he liked about her on index cards he placed inside the box like a treasure chest. On one hand it was touching, but on the other hand it hurt – it made me realize there wasn’t anything special about me as far as he was concerned, but rather I was just fulfilling some romanticized role he had created in a fantasy. It also explained why he referred to me in the third person when we talked to each other. I was an object. I could barely get him to stop using a fake accent he had concocted when we were being intimate and not silly. I can only imagine the lies he is telling everyone about why I chose to end the relationship, but now I have to worry about him showing up at my sister’s workplace across the street, or hovering around my apartment’s entrance door and slipping in and then trying to SHOW ME how even though he tried to conceal a big part of his life from me and lie about the rest of it, he was going to swoop in on his white horse and save me.

I was logged on for all of seven minutes at about 3:32 a.m., and I guess that was enough to ring the fresh meat dinner bell. Immediately I got a few messages, including the usual with no punctuation: “Hi”, “Hi how are you” “Hi” “hi” “hi how you” and then one saying, “Wow! You are gorgeous! Do you want my phone number?”

I can’t handle the bullshit yet. The littlest nope:
LittlestNope

Please, Sir, May I Have Some More?

Posted on by akiwifreund

My parents’ generation were the product of parents who lived through the Great Depression. My grandparents had to be creative with their resources; the flour companies started making pretty prints on their flour sacks once they figured out that mothers across America were using the sacks to make dresses. Re-purposing so that nothing went to waste, our grandparents were also guilty of turning their yards and barns into trash heaps. They were fearful of throwing anything away in case it would be needed in the future.

My parents’ generation, the baby boomer generation, turned around and said to their kids, “I’m going to give you everything I didn’t have,” which really meant that they wanted their kids to have new stuff. This started a trend of some of my classmates actually having cars being purchased for them, or having college tuition being paid for them, and by middle class – not wealthy – parents. Credit cards also started circulating heavily and regulations became non-existent, making it incredibly easy to rack up debt.

Now my peers are struggling to make ends meet and are in debt up to their ears while still providing cars and tuition and pocket-sized computers to their children as if they are staples, not privileges.

There’s a lot of talk about going back to basics and scaling back, while also teaching our children about how to manage money and understanding the consequences of debt.

I’m in a different kind of quandary, however. I need to figure out how to be poor. I mean really, really poor, in the current system – not what it was, and not what we wish it would be.

Back in 1995 when I took the road trip around the U.S. to pick a new place to live and ran out of money and said, “Okay, Albuquerque!”, I was poor. I landed with $100 and slept on someone’s futon for a month. But I was also able-bodied and picked up two jobs and moved into an apartment within a few weeks. I still had times where I lived off of $10 a week for groceries, but this is a little different. This is finite.

I sat down with the financial planner at my bank and figured out the rest of my bills for this year. However, I’m really stressing about my bed. It’s sagging and I can feel the springs poking through even with a thick foam topper – really bad for my fibromyalgia – and it’s only a year and a half old, and I’ve worn through it because I’m in bed for about 20-22 hours every day. Sleep Number is running a sale right now through September 11th and I could replace this bed for about $1100 including their least expensive base, and that would take care of the springs issue and would probably last 6-10 years. Do I buy it? Or does buying it now put me that much closer to eviction next year? If I’m evicted, what am I going to do with the bed? If I get housing at some point down the line, I’m going to need it again, uncontaminated by mold/dust/dander because of my mast cell disease.

I’ve had alopecia since the age of 3, and I lost my hair completely 14 years ago. There is a 30% off sale going on right now, which would give me a considerable discount on the wig I usually wear. Should I get that instead of a bed (it’s much less expensive)? Should I just give up on wigs now anyway because if I’m evicted next year for non-payment I won’t be able to afford them anyway and I don’t deserve to be so vain?

I have enough in my account to get me through to November of 2017. I’m a worrier by nature. All I can think about is, what am I going to do if I get turned down for disability? I mean, I hope the disability hearing happens by November 2017, because I filed for it in February 2016, and they are running 18-22 months behind (but just in case I have my senator flagging this case as “congressional interest”). Priority housing is given to people who are verified as disabled or who have children; if I am not verified as disabled (because I don’t have a diagnosis) and I don’t have children, I won’t have enough “points” to qualify for housing. All of my friends and family have pets and I’m deathly allergic, so moving in with them is not an option.

I’m concerned about both my mom’s health and my mom and step-dad’s financial stability, and my step-mom’s husband’s health and their financial stability. I’m concerned about my sister’s health and her family’s financial well-being. I’m concerned about my brother’s brand new baby who is due in the next few weeks and his little family’s financial stability. I recognize that they all have grave concerns of their own while they try to shield me from them and simultaneously try to take care of me. Certainly none of them can afford to pay for another adult’s living expenses.

I receive notices from friends telling me that I should support certain causes. I’ve said repeatedly that I don’t have any income and I won’t for at least another year, if at all, but they take “income” to mean working income. They just assume that I receive disability, even though I’ve said repeatedly and clearly that I’ve been turned down for disability numerous times. It wears me out to worry about being homeless, and I’m pretty overwhelmed by all the stuff I have to do to further my own cause since all of the offers of help were not really followed up on except by a select few, and it’s humiliating that I have to repeat myself to be heard.

This weekend I had a former fuck buddy hit me up out of the blue after years of silence to try to give me shit about moving back to my home state, mocking me about my claim that I was done with snow and cold when I moved to Arizona in 2003. I told him that I was pretty fucking sick and had stumped 54 doctors so far and could no longer live without assistance; he said he was working on three hangovers and he was sorry I was sick. He loves to talk about how he’s tired of welfare assholes, and I’m sure he thinks I’m one now too. We can’t even really have a conversation with each other anymore because in his eyes as well as in the view of the government, I have no value.

So where is the class that teaches me to navigate being homeless on the streets in a snow state? Do I get a free map to all of the soup kitchens? Where’s the best place to stash my cart outside while I warm up and surf the net in the library? How do I make a shank?

Hit Me Baby One More Time

Posted on by akiwifreund

Today I had another dental appointment, my second for the week. I had thought this would be the “easy” appointment because we were just fixing a broken filling in the back right bottom tooth, part of the whole series of fixes that are a part of the issues that are being caused by me clamping my jaw in my sleep and cracking and breaking all of my teeth because I’m in so much pain.

I should have known that the first bad sign would be the pedestrian who walked out in the middle of the road without warning. My cab driver slammed on the breaks and left us both gasping, and then swearing at him; he just strolled slowly as if he didn’t care that he had just tried to compete with a couple of tons of metal and his human body sure would have lost if my driver would have been any closer whilst trying to slam on the brakes. Maybe he was tired of his life and thought today was a good day to die. Maybe he figured he was just a short ride from five different hospitals and it would be a couple of free nights of room and board with painkillers as the cherry on top. Whatever his reasoning for being a jackass, I was ready to open my door and beat him with my cane. Fortunately for him I was running on 80% blindness, a torn left shoulder cuff and an appointment to keep.
2016-08-26 11.17.14

I was called back for the appointment and the assistant introduced herself as Brittany. After she got me set up with the bib and the ugly-ass biker sunglasses (because that’s all the rage now, for dentists to put safety sunglasses on their patients while they drill and shine bright lights in our faces – but really I think it’s so they can’t see us crying), the assistant dentist came in to start me on the Novocaine shots. She informed me her name was Brittany too, so I was officially being worked on by two Brittanys. Yea for something easy to remember in case I had to yell!

The assistant dentist put the swab of numbing gel in my mouth and I thanked her, telling her that the main dentist didn’t do that at all on that side for me on Tuesday. I said I believed that he was trained in a war zone. Both of the Brittanys got really quiet and looked at each other over my biker glasses, and then the assistant dentist tried to make a weak joke, like “Oh, you know, going to dental school is kinda like training in a war zone, ha ha!” and I said, “But I’m right, aren’t I?” and they said, “Yes, you’re right.” Okay, score one for me and my ESP. Sometimes I don’t always like to know everything, but lately the universe has been finding ways to make sure I know. None of this blissfully unaware shit.

Assistant dentist Brittany started doing the shots. As usual, my heart rate started jumping up. I felt like there wasn’t a lot of numbing going on though. So she went for another round, this time going on the inside of my teeth along the gums. The Brittanys went away for a while so the numbing could kick in, and I did a few exercises with my mouth to encourage the Novocaine to spread, like silently mouthing “Unique New York.” I could feel my right jowl going numb, buy my tongue and inner gum line were still feeling normal.

When the Brittanys came back in, they decided to start drilling. I warned them that I still had feeling, but they guessed that I was just feeling pressure or temperature. Now, kids, I know the difference between pressure and nerve pain – I’ve been through 9 lumbar punctures and they’ve hit my nerve bundles with needles every time, it’s really freaking unpleasant, and it can’t be compared to feeling a little cold. So after the third time I said “Ow!” from them hitting a nerve, they finally relented and assistant dentist Brittany did a third round of Novocaine. She told me I should feel the difference immediately. I told her that I didn’t. She sighed, went in for round #4, all along my gums on the right side and hit the juncture between my upper and lower jaw, and gave it a few more minutes to kick in. Finally it wasn’t completely numb but it was just enough numb that we could drill for about four minutes and get the rest of it taken care of.

Generally speaking, most dentists and assistants can handle two instruments apiece. Assistant Brittany was struggling with two straws and a mirror and I was nearly drowning, so I offered to do what I did before – I held one of the straws and kept my hand out of their way while they did the rest. They thought it was great.

The most difficult part was the filling. They were trying to keep the very back tooth dry while they put in a white resin filling (because I’m allergic to mercury fillings so it had to be the resin), and they were doing all kinds of things like moving my tongue and putting cotton wads in my mouth and triggering my gag reflex. They actually got me so badly that I thought twice I was going to throw up all over myself, and at one point I had grabbed their hands because I was ready to move them out of the way in case that happened. I had tears streaming down my face again. My stomach heaved. The Brittanys cooed above me, “I know, I know, it’s terrible, we’re trying not to make you gag, but it’s in the toughest part of your mouth to get to, try to think happy thoughts, wiggle your toes, oh good, you already are, just about three more minutes now, try not to throw up, we’re nearly done, you’re doing great, you’re doing really great, it’s almost time, that cotton is awful, what do you have for plans this weekend?” It was absolutely ridiculous. I checked my makeup afterwards; I expected to have trails of black eyeliner down to my chin, but I had forgotten that I had sealed it this morning in anticipation of the shit show and it had survived quite nicely. (Side note: I strongly recommend eyeliner sealant available from Meow Cosmetics – it’s the consistency of water and you put it on sparingly and must let it dry, but man, it is GREAT for keeping your makeup on longer!)

This is how I think I can help, as a patient: Have me sit upright for the first part of it so I can help position everything like wads of cotton; if I know where it’s supposed to go in my mouth, I can probably make it happen without making myself vomit and without having to fight gravity so hard. I know that they were trying to get everything done as quickly as possible, but just like I helped with the straw, I can also help with stuffing cotton in my mouth and not barfing. If I can handle my Ren & Stimpy nubs for teeth to eat with for weeks, then surely I can handle that.

Just as the Brittanys predicted, as we’re rounding up to dinner time, I’m starting to get some feeling back in my mouth.
https://www.youtube.com/watch?v=KqE14og1cQ8

The Tiers of Privilege

Posted on by akiwifreund

Minneapolis and St. Paul feel like very different cities from when I moved away 20 years ago. There was a palpable difference between Minneapolis and Albuquerque; in Minneapolis in 1995, my neighbors were white, black and Hmong (thanks to new policies welcoming large numbers of Hmong refugees from Thailand, Laos and Vietnam seeking a better and safer life), and in Albuquerque, the population was largely white, Hispanic and Native American. I felt as if I had moved to a different continent. The way that people interacted is something I can’t easily describe, except that I learned the “manana” (“tomorrow”) concept from my co-workers the hard way, and was told by employers that I would always be valued because I was a Midwesterner and therefore more “uptight and on time.” The population in Phoenix now closely resembles Albuquerque from 1995 – again, the residents are largely white, Hispanic and Native American. Because the southwest didn’t shift in any obvious way, I didn’t expect the Midwest to either.

When I moved back to the Twin Cities, I was not prepared for the greater diversity in the population, but my traveler’s heart is quite excited by it. A lot of the cab drivers I have had for my medical transportation have immigrated from Somalia, some arriving the same year I left Minnesota, telling me stories about how they excitedly called their relatives back home to tell them that powdered ice was falling from the sky (snow), and their relatives always asked the same question: “For free????” There are also now large Hispanic communities settled especially around the cities where living wages might be available. All of these groups are bringing their wonderful musicianship and dancing and food and willingness to endure countless hardships as strangers in a strange land because they know that turning back is not an option.

Why am I talking about all of this anyway? Well, the U.S. has always been a country of  tiered privilege. The caste system does not only live in India, my friends; it’s alive and well, even here in Minneapolis/St. Paul, where we pride ourselves on this appearance of being so tolerant but then have something so stupid/needless/heartbreaking/violating/sickening as the shooting of Philado Castile happen. But it’s not just race that determines where you land in the land of privilege – there’s a lot of “ands” that are the deciding factors.

Let’s start at the top. Your average white dude is the ultimate king of the food chain, born with the silver spoon in the mouth. Guys, you just are. If shitty things happen to you, the system isn’t against you in “pulling yourself up by your bootstraps.” You might want to feel sorry for yourselves, you might want to stomp and cry and try to convince us that you are being picked on and we should feel sorry for you, but I can’t. I can’t.

We can take it down a notch and look at white men who are physically handicapped by a chronic illness. Men are believed faster/more often than women when it comes to pain. Why? Medical sexism. On the tiers of privilege, white men who are in some way physically deemed “less valuable” by society are on a lower tier than ordinary white men.

I’m pretty sure my place is on the next tier down from that. I’m a white woman.

But wait: knock me down a few more rungs, because I’m a white woman who is also physically disabled. Since I’m a woman and I’m physically disabled, I have absolutely no value whatsoever, a “non-person,” specifically. My cane and paralyzed face make me invisible to nearly everyone (and if you don’t believe me, you should walk through a store or down a sidewalk with oncoming foot traffic with me).

But yet…where do all of our friends and neighbors of color fit in?

My Filipino ex-boyfriend was educated and articulate (except when it came to actually being in a relationship – but that’s another story); his status as a man was relatively high, but as a man of color he ranked lower. Unfortunately he suffered from bipolar disorder, so that could be seen as a detriment, but then again, he was believed – his gender saved him from medical sexism. He always claimed that strangers looked at us distastefully when we were out in public. I think he is valued much more than I am, even though he would deny it.

My most recent Native American boyfriend had a much harder upbringing. He grew up on the largest reservation in the U.S., the Navajo reservation on the New Mexico side. Poverty, crime and mental illness brought him into adulthood. He left the rez to get an education, but for one reason or another, he has clung to the the things that have only brought pain and destruction to his life. Where does he fit into this world?

And then there are the women of color who earn even less than the men, who are physically and sexually assaulted, are obviously valued less when they are forced to remain silent in the company of men or to walk a few steps behind them. Add an “and” to them – a physical disability – and really, how much lower can one go in terms of value as far as society is concerned? I startled a Somalian woman in a waiting area once; I carry cough drops and I noticed she was having a coughing fit, so I offered her one. Her interpreter arrived a few minutes after that and she was called back for her appointment, but she made it a point to tell her interpreter to thank me in English. I did not consider it an insult that she did not know how to say it herself when she was on her own, but since I know how the public at large acts more often than not, I could just imagine that even that simple interaction added stress to her afternoon. Like me, she walked with a cane. I wondered how she was treated by her peers and family.

I am always disappointed when I see/hear someone say, “Why don’t they just ____”? as if we are simple creatures and there’s a one-size-fits-all answer. There isn’t. (That’s why they should stop just conducting medical studies on middle-aged white men if they want real-world results. I mean, hey, we finally figured out that heart attacks are worlds apart between men and women!) The most important thing to understand is that just because things look a certain way from where you’re sitting doesn’t mean that everyone else feels the same way. If you can’t see past yourself, then your world is very small indeed.

Happy Anniversary

Posted on by akiwifreund

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
2016-04-12 21.37.08

Rare + Rare = Still Rare

Posted on by akiwifreund

Yesterday was generally a non-productive doctoring day for me. I went to see a neurologist in a different medical system outside of the ones that I have tried just to see if I could at least get an acknowledgment that what I’m dealing with is not that idiotic label “facial weakness” that the U of MN doctor put in my file. Besides trying to work towards a diagnosis, I’m also trying to build my case for disability, and I keep hearing my attorney’s voice in the back of my head saying, “If you don’t get a diagnosis by the time you are sitting in front of the judge, you’re screwed.”

The neurologist was very friendly and open, and definitely had the approach of working with me as part of a collaboration rather than dictating to me. However, we still had a breakdown in communication. She could not wrap her brain around the concept about why I have a shunt in the first place (and indeed is the same barrier for 99% of the doctors I talk to even though I explain to them that the shunts were placed because my symptoms improved temporarily after receiving lumbar punctures 12 hours apart). Almost all doctors incorrectly jump to the conclusion that my face is drooping because I’m overdraining – as if the fluid is pulling my face down with it, like I am living out a Salvador Dali painting. It’s easier for me to explain the shunts and the failures and the symptoms to people who have absolutely no experience with this world because they have no expectations and no preconceived notions (except for the asshole armchair “experts” who don’t know shit but think that watching a few episodes of “House” have made them suddenly intellectually superior).

Because this doctor had wonderful bedside manner, I made sure I took the time to assure her that her inability to give me a diagnosis or a direction was not her fault or a failure on her part as a physician. As a matter of fact, she was doctor #50 in six years, and I told her that too. The combined look of horror and chagrin was a bit comical. I gladly accepted her recommendations for a pediatric neurosurgeon (because sometimes they take the most complicated adults) as well as a rheumatologist she thought would have the best bedside manner, so all was not wasted on that visit. I also explained to her that I would be attending the national hydrocephalus conference June 16-19 being held here in Minneapolis and that I had t-shirts printed:

This week another one of our relatives passed away. His niece happened to contact me through 23 & Me, where I have an account set up after getting my genes tested last July; I wanted the cheapest way possible to get them set up in a database while I tried to figure out what is going on with my body and just how rare it really is. It turns out that this relative of mine has a daughter who is also super rare, truly one in seven billion! It’s so rare that they actually had to formally name it: Hemolytic Anemia Medicine Lake. The “Medicine Lake” portion of the name refers to the area that I and a large portion of my extended family grew up and lived in in the western Minneapolis area. Unfortunately it’s not in any way similar to what my problem is so I can’t go to the NIH and tell them to link our cases, but we definitely hit the rare disease lottery in this family.

By the way, universe, I’d like to win the LOTTERY lottery.

And I won’t be going back to this neurologist, as nice as she was, because she described herself as a “neighborhood neurologist.” She said that she was a step or two down from the facilities where I had been trying my luck, and this was way over her head.