Ushering Out 2018

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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We’re Not Friends

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

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

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

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

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

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

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

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

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

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

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

Co-Dependency: I’ll Scratch Your Back If You’ll Scratch Mine

Co-dependent: I’m quick to use the term. It’s not so easy to define, though. I’ve been trying for better than a decade to find just the right words. It seems most psychology publications are in the same boat as me.

PsychCentral defines it as “a person belonging to a dysfunctional, one-sided relationship where one person relies on the other for meeting nearly all of their emotional and self-esteem needs. It also describes a relationship that enables another person to maintain their irresponsible, addictive, or underachieving behavior.” So really, they provided two definitions, not just one.

GoodTherapy.org breaks it down with a good ol’ list (because we love bullets) and explains that the “old” way of thinking was that everyone’s feelings were centered on one person’s addictive behaviors. Now co-dependence is recognized in much broader terms to include the role of caregiving, denial of personal problems, low self-esteem, feelings of guilt when offered help or attention from others, sensitivity to criticism, perfectionism and fear of failure, a projection of competence and a need to control others.

But the definition from GoodTherapy.org doesn’t make clear that there has to be at least two people in the relationship to make it co-dependent. At least one of the parties has to have low self-esteem and be sensitive to criticism and project a false sense of competence, and have support and attention from another party to continue carrying on with those behaviors. And let’s be clear, here: both or all parties can be co-dependent upon each other. Mothers and daughters, friends, teachers and students, lovers. Of course, some relationships are much more intimate and lasting than others.

Here is a comprehensive list from CoDA.org (Co-Dependents Anonymous.org):

Patterns and Characteristics of Co-Dependence; Co-dependents often:
• have difficulty identifying what they are feeling.
• minimize, alter, or deny how they truly feel.
• perceive themselves as completely unselfish and dedicated to the well-being of others.
• lack empathy for the feelings and needs of others.
• label others with their negative traits.
• think they can take care of themselves without any help from others.
• mask pain in various ways such as anger, humor, or isolation.
• express negativity or aggression in indirect and passive ways.
• do not recognize the unavailability of those people to whom they are attracted.

Low self-esteem patterns; Co-dependents often:
• are extremely loyal, remaining in harmful situations too long.
• compromise their own values and integrity to avoid rejection or anger.
• put aside their own interests in order to do what others want.
• are hypervigilant regarding the feelings of others and take on those feelings.
• are afraid to express their beliefs, opinions, and feelings when they differ from those of others.
• accept sexual attention when they want love.
• make decisions without regard to the consequences.
• give up their truth to gain the approval of others or to avoid change.

Control patterns; Co-dependents often:
• believe people are incapable of taking care of themselves.
• attempt to convince others what to think, do, or feel.
• freely offer advice and direction without being asked.
• become resentful when others decline their help or reject their advice.
• lavish gifts and favors on those they want to influence.
• use sexual attention to gain approval and acceptance.
• have to feel needed in order to have a relationship with others.
• demand that their needs be met by others.
• use charm and charisma to convince others of their capacity to be caring and compassionate.
• use blame and shame to exploit others emotionally.
• refuse to cooperate, compromise, or negotiate.
• adopt an attitude of indifference, helplessness, authority, or rage to manipulate outcomes.
• use recovery jargon in an attempt to control the behavior of others.
• pretend to agree with others to get what they want.

Avoidance patterns; Co-dependents often:
• act in ways that invite others to reject, shame, or express anger toward them.
• judge harshly what others think, say, or do.
• avoid emotional, physical, or sexual intimacy as a way to maintain distance.
• allow addictions to people, places, and things to distract them from achieving intimacy in relationships.
• use indirect or evasive communication to avoid conflict or confrontation.
• diminish their capacity to have healthy relationships by declining to use the tools of recovery.
• suppress their feelings or needs to avoid feeling vulnerable.
• pull people toward them, but when others get close, push them away.
• refuse to give up their self-will to avoid surrendering to a power greater than themselves.
• believe displays of emotion are a sign of weakness.
• withhold expressions of appreciation.

As I revisit the definitions, I evaluate first my own behavior, but also a few specific relationships near me (that I have to be careful not to become too invested in, though I tend to become protective and outraged when I spot misbehavior). I think that the actual name “co-dependency” will be adjusted within the next 5-10 years, though what it will morph into will be a great mystery.

The Great Debate

When I was 14, I was visiting my dad’s house for the weekend and sleeping on the couch, which was the normal – I didn’t have a bedroom there. I’m a light sleeper. So it was a surprise that somehow between 12:30 a.m., when I fell asleep, and 7:00 a.m., when my stepmom answered a phone call from a stranger alerting her to the fact that her purse was scattered on the stranger’s front lawn, that the house had been robbed – and the burglar had somehow gotten past me. Three hunting rifles had been taken off of the wall along with a video camera and tripod, and of course, the purse.

The next night my dad took my place on the couch with his handgun in case anyone decided to come back. We used all of my babysitting cash to re-key the locks. But this story demonstrates many points: I grew up around guns (that were never locked up), the hunting rifles made it somewhere into the wide world to be used for who knows what, and that we are a violent society. The cops were surprised I was still alive and unharmed.

Not many years later, when my brother was five and a half, he was given his first gun for Christmas. His first few minutes alone with it and he shot out his bedroom light. I was never given a gun because I was a girl. Mind you, I never felt as if I missed out. But my dad and my brother perpetuated craving violence and guns. Even though I was the one who was on the couch, exposed, they were the ones who wanted to kill, kill, kill. At least, that’s what they projected.

My dad’s own father died of a self-inflicted gunshot wound. In fact, Dad was the one who found him. Included in the three rifles that were stolen was the one that Grandpa used to do the deed. It had a strange sort of sentimental value that I couldn’t relate to. Who would want to cradle that weapon, and use it over and over, knowing its history?

Fast forward a few decades to when I lived with violent men. One was the guy who grew up in Manhattan in a household whose own siblings stabbed each other. The last day I saw him was the last time I called the cops on him, when he was supposed to be gone at work while I moved my things out of the house we were renting. Instead he was hiding in one of the back rooms and came out when I set down some moving boxes and attacked me. I struggled to get back out to my car in my stocking feet and he was restraining me and pinning my arms, telling me that if I would just do what he told me to do, we would be happy. I finally wrestled free and got in my car and called 911. The responding police officers bought his big-eyed innocent act and told me that if I called them again that I would be arrested.

Then there was the live-in boyfriend who threatened to shoot me – twice. He also talked about taking his guns to work to shoot all of his co-workers constantly. The cops reassured me there was absolutely nothing I could do until he actually followed through and hurt one or all of us. 

Most recently of course was my downstairs neighbor who moved out the last weekend of July, 2017. He used to beat his wife and abuse their cat. Whenever I had visitors I was a nervous wreck, because I had no idea if he would pound down the door while they were here, falsely claiming that we were too loud, or take it out on me later, screaming and raging and dreaming up reasons to call the cops on me. Worse yet he could of course physically pulverize his wife and cat for revenge, just for existing. He was ex-military so I knew it was likely there was a gun or two or seven in his apartment.

So here we are in the U.S. with our easy access to the worst kinds of weapons and ammunition. I am the one who was laying on a couch while a stranger or two crept past me to rob our house; you would think I would fall into the category of wanting a gun for home protection. I grew up around them; you would think I would relax around them. I’ve lived with and around plenty of assholes who have wanted me dead; you would think that I would feel safer armed.

Fuck that.

First of all, we have over 7 billion people on the planet. We are no longer hunting strictly for food supply. Anyone who claims that is an outright liar. And hunting season is so abbreviated that there’s no need to keep guns out for the entire year to make them accessible to every man, woman and child on the planet. Second, home invasions do not happen with the regularity that the NRA has somehow convinced the gun lovers they do. I remember reading from one guy a quote last week that Texas experiences 800,000 home invasions a year. My answer was, “Are you talking about bugs?” I mean, c’mon. If that were true, Texas would be experiencing a mass exodus.

The biggest and hottest debate that has resurfaced is the arming of school staff. I cannot stress this enough, but there are so, SO many reasons why this is a bad idea. Right now I live in the city where Philando Castille was shot. He had a permit to carry a concealed weapon and told the cops, and was shot and killed anyway. If for some reason some idiots decided arming school staff members would be a good idea, the staff members had better be lily white, because we Americans cannot be trusted to be color blind. Even black cops have proven to have prejudice against black suspects without meaning to.

I posted this article on Facebook regarding an armed officer who never engaged in the shootout that was happening in Florida. He simply hung back while all of those kids were getting shot. I pointed out that if an officer did this, why would we expect teachers to uniformly charge without fear or hesitation, and to act correctly? A friend of 27 years, whom I considered a decently good friend, didn’t like that I used this as an example of why we shouldn’t arm teachers and staff. He also didn’t like that I proposed that we have stricter gun laws regarding background checks, wait times, amount of ammunition sold, amount of ammunition guns could fire, types of guns that could be sold on the market, and age of buyers/operators. He resorted to calling me an idiot. Finally, he just outright blocked me. 

But am I an idiot? I’ve just been trying to stay alive. I have all of this violence swirling around me, and all of these men are insisting that they have a right to violate me. I’m saying no. I will continue to say no. I’m good with saying no.

Lastly, here is a comprehensive list from a woman named Karen Nichols in Ottawa Center, Michigan; she had many questions regarding arming teachers and staff, and did a great job of articulating them:

Which teachers get guns?
Where will the guns be stored?
Who decides when guns can be brandished?
What penalties will apply if teachers mishandle a weapon?
Will teachers volunteer for gun duty?
Can teachers refuse it?
Who will audit their adherence to regulations?
Will students know which teachers have weapons?
Who will be liable if the teacher with the gun becomes the shooter?
What will be the consequences when students are accidentally shot by a teacher?
How will armed teachers communicate in a tactical situation?
Will teachers with a history of mental illness be allowed to use weapons?
Will teachers be required to disclose any history of mental illness?
Will teachers be issued a weapon? Reimbursed for purchase? For ammunition?
How will administrators conduct non-weapon-related discipline against a teacher?
Will there be armed assistance available to deter workplace shootings?
Who will shepherd the armed teacher’s classroom while the teacher is attempting to locate the active shooter?
What happens when a teacher misidentifies a student as a threat in good faith?
Will teachers who do not carry lethal weapons be offered non lethal alternatives?
If an armed teacher is shot, can another teacher employ his or her weapon?
How will armed teachers identify themselves to arriving first responders?
Will armed teachers be required to learn how to give first-response medicine?
Will armed teachers be required to attempt an arrest before using lethal force? Under what circumstances?
Will proficiency training on weapons count for teachers’ continuing education and professional development?
How will insurers adjust health and other rates to account for the presence of armed employees?
Will teachers receive additional pay for being armed?
how often will armed teachers be re-evaluated for licensing purposes?
Will armed teachers leading field trips deposit their weapons in a personally owned vehicle or school-owned transport?
Will one teacher per wing of a school building receive weapons? Two? Three?
Exactly which standards will count for proficiency—greater than a big-city police department, State Police, FBI, hobbyist, marksman?
In training scenarios, how will using force against innocents be penalized?
Will racial sensitivity courses be required?
Do parents have a right to refuse to send their kids to schools with guns?
Will students have to sign waivers? Will parents? What if a parent signs a waiver for a minor student who, when that student turns 18, refuses to abide by its provisions?
Will teachers on probation be allowed to carry weapons?
What about teachers with active union grievances? Complaints about sexual harassment? Anger management? Divorce proceedings?
Will armed teachers wear holsters?
Will they be stationed strategically during pep rallies or other gatherings?
Will they participate in lockdown drills as if they were armed or unarmed?
Will funding for the policies outlined above be distributed according to local budgets, statewide formulas, or national formulas?
Will schools in high-risk neighborhoods receive more or less funding? Suburban schools?
What is the right ratio of armed:unarmed teachers by grade level?
What is the procedure for debriefing and assessing armed teachers’ performance during a crisis?
Can an armed teacher who flinches be fired? Can an armed teacher who breaks protocol be rewarded?
Will preschool teachers have guns?
Will teachers in “juvie” (high risk) schools have guns?
Will the teacher or the school be liable if their gun is stolen?
Can administrators carry weapons? Can they do so in disciplinary situations?

Think about this: I quit playing clarinet after 8th grade because my band teacher was an outright asshole. After I quit, he was fired for punching a student. But let’s give him a gun, right?

The Tender Trap Of The Gender Gap

I received three letters in three separate envelopes from the state medical board. I tore the first one open; a single page with the name of the respondent at the top and an official signature at the bottom. “Dear Miss: We are writing to inform you that your claim will not proceed because there is not sufficient evidence…

What the board was telling me is that my claim against three doctors is being denied. They saw my facial droop, my staggering walk, my shaking legs, heard my stilted speech, and then saw it go away when I tilted my head to manipulate the CSF in my cranium, and they wrote in my medical records that I was making it all up. It took me close to a year to get the correct testing after that. When I had everything together, I bundled it and sent it to the state including the disc with my complete MRI showing my brain had collapsed. I sent documentation from my previous surgeries. I outlined how their notes directly affected my life – both by delaying my care, and because I was denied by the Undiagnosed Diseases Network based on their notes.

The only conclusion that I can possibly come up with is that I’m a woman. Who could believe me? Why not attach a hinge to my cranium so I can flip my lid open for everyone to see, and then maybe, maybe, they will consider the notion that I’m telling the truth?

The irony is that this very place where these doctors work tweeted an article today about how there’s such a big gap in women being tested in healthcare trials, and how there’s still a huge gender bias against women when it comes to our symptoms being recognized and validated. THIS EVEN HAPPENS IN LAB RATS. So they are willing to admit it happens,

but

not willing to admit it happens with them.

Here’s another article that speaks directly to the phenomenon of being a woman in the healthcare system. Women are “emotional” and therefore shouldn’t be believed. By the way, female doctors can be just as unforgiving as male doctors.

I’m going to take a little time out to compare and contrast. I have a male family member who had rotator cuff surgery when he was a teenager, at least 13 years ago. He just had to have an EMG of his arms and possibly legs. I was explaining to him what to expect since his doctor’s office didn’t do a very good job. Let me emphasize that there’s a 13-year span between those two medical events. Yes, recovery from rotator cuff surgery isn’t pleasant, and an EMG isn’t pleasant.

In comparison, I’ve had 10 brain surgeries, 12 abdominal surgeries, 4 infections cut out, 7 crowns, 10 spinal taps, 2 EMGs (including my face), a year-long CSF leak, and a spinal blood patch in a 7-year period. For a lot of these I couldn’t have Lidocain because my body doesn’t metabolize it, and it’s the same for morphine. So every time I was poked or sliced or stitched, I felt it. I also tore the capsule and the tendon in three places in my left shoulder (but couldn’t get surgery because of all of the scar tissue I make). I’m also horribly allergic to my shunt that is still implanted and runs from my brain to my abdomen, so I constantly feel like I am being stabbed in my lower abdomen.

This male relative’s doctors immediately jumped at the first sign of his trouble. The help he has received is in stark contrast to how I have been treated, which is to be called a liar and to be treated as a hysterical woman. He was also considerably nervous about the EMG. I tried to reassure him that if he could get through rotator cuff surgery, the EMG would be much easier. Seriously, I would trade that CSF leak with just about anything. An EMG is a walk in the park.

So, what exactly do women have to do to “prove that they are in as much pain as men”? Shouldn’t it be the other way around?

Who Wants To Live Forever?

1912 was an awfully long time ago. World War I didn’t even start until two years after that. Not everyone had a car, or electricity, or running water. The stock market crashed in 1929. The dust bowl and the great depression happened after that, and World War II.

But I’m getting way ahead of myself, so let me go back to 1912, because that’s the year that my Grandpa Ed was born. And now, maybe in a matter of hours and maybe in a few days, at the age of 105, we are going to say goodbye to him.

Imagine what it would have been like to see what he has seen. He grew up in a tiny rural town in a large family and didn’t speak English until around age 12. His family came from the area that is now known as Slovenia; then it would have been either Yugoslavia or Hungary, depending on whatever local wars had been fought and won or lost. 

When he was 17, the stock market crashed, and it was the beginning of the great depression. It was also the beginning of prohibition. He knew who was running booze out of the church basement, but he never got in on it. He just kept his head down and his mouth shut. The county where he lived all of his life is actually the moonshine capital of the U.S. and still has active backyard stills to this day, now that making your own hooch is back in vogue.

Grandpa really wanted to be a baseball player. 

Eventually he married my Grandma. We didn’t hear much about their courtship. They were far from the romantic types. They were married for 62 years when Grandma passed away, and by that time, they knew each other very well. Grandpa would sometimes turn off his hearing aids if he didn’t want to listen to Grandma – he’d call them his “ears.” After Grandma was gone at nearly age 92, most of the eight kids were sorting through old papers in the basement and they happened upon the most romantic note from Grandma to Grandpa from before they were married. It said something to the effect of, “I’ll be playing the organ at church next Sunday, I hope to see you. Sorry I was so crabby the other day.” 

With 8 kids to raise and a farm to run, Grandpa had to just be content with listening to ball games or reading about them in the paper instead of chasing his dreams. He really hated farming sometimes. He knew how to fix things out of necessity, but on many occasions he could be heard swearing and cussing up a storm at the tractors. One time he walked in on my mom and her three sisters while they were cooking and baking in the kitchen, imitating his ranting and raving. He didn’t think it was so funny.

Like with a lot of things, he had to do certain tasks simply because no one else would or wanted to. They raised chickens, pigs and cows. When I was very little, Grandma became attached to an orange-colored chicken who was quite social whom she named Henrietta, and that girl followed Grandma everywhere. Henrietta couldn’t be spared at butchering time. Grandma couldn’t do it, so Grandpa had to, and Grandma cried and cried.

Grandpa gave up driving around the age of 91. Since he lived way out in the country he could wait that long, but even then it was getting to be a stretch. But he still would take out this old Volkswagen Rabbit for a spin in the fields once in a while if he felt like it. After our Grandma died, one of our aunts lived with him for a few years and took over driving duties; following that, responsibilities were split between the siblings until at age 101 it was decided that he had to leave home and live in a facility.

After Grandpa got settled in the nursing home, he got on with playing blackjack.

This is a picture of Grandpa from yesterday along with my stepdad. The headphones are super amplifiers.
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Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

Give Me A Break

On Thursday afternoon, I saw my 59th doctor, a neurosurgeon. At least, I think he was #59. I don’t feel like going back in my previous posts to make sure. I could be like that person who doesn’t want to admit that their birthdays keep happening so they claim to be 29 & holding.

The ride out was long. The conversation with the cabbie was lively. His name was Isaac. I found out he has a wife and five children who still live in Uganda. He goes back every 6-8 months to spend time with them when he has saved up enough money. I can’t imagine having to live like that, my loves living half a world away. He told me about the worst job he ever had (digging pits that were 20 feet deep, 16×16 wide/long with a pick ax and then having to haul away the dirt himself because there was no machinery). The pits were for storing water. We talked about what shocked him the most when he moved to Minnesota the first time, which was snow (before global warming kicked in, the state used to get dumped on so that sometimes the snow would be thigh high) and teenage pregnancy (in his culture, girls would live with their parents until they were married and they never spent time with boys until the marriage happened). We talked about how violent men are towards women in the States, and how women are so accommodating and undemanding of the men, as in, “It’s okay if you don’t work. Here, lemme make you a sandwich and buy you a house.” See? Lots of sharing.

In my appointment, I first talked the physician’s assistant through everything and demonstrated how my symptoms disappear when I tilt my head parallel to the floor. He asked if I had seen the one doctor I had asked to see, and I said I hadn’t. He asked why, and I said, “Because he said there wasn’t anything wrong with me.” The PA couldn’t hide his bafflement. He said it was obvious that my ventricles were completely gone. He did a few of the standard neurological tests like having me squeeze my eyes shut, follow his finger with my eyes, push and pull his arms, etc. Then he went to get the neurosurgeon.

The neurosurgeon came in and after our introductions, he said he had talked to my neurologist. He mentioned that they thought I was overdraining, and I shot that down immediately. I told him that my lumbar puncture came out with a high opening pressure and I hadn’t had anything surgically done since then. I also told him that I had a leak for an entire year so I know the difference between overdraining and underdraining and they are completely different sensations. For me, the underdraining always brings vertigo, fatigue and the facial droop. Overdraining will never bring paralysis for me; instead, I get the tire-iron-beating-me-in-the-skull pain. 

We talked about the fact that there hasn’t been new shunt materials in ages. We talked about the near-impossible task of finding materials that I won’t be allergic to since I’ve had so many already and I’ve reacted to them.

We also talked about the mass that’s growing on my right side. I asked him if it was at least possible to take that out. I’ve been having pain on the right side that radiates down my neck, and if it’s killing brain tissue and turning it to jelly (which it is according to the MRI), then I’d like to get rid of it. However, because of where it is – in my cerebellum – it’s in a bad spot for a craniotomy. As of November it had grown to about the size of a quarter (not sure what size it is now). 

The neurosurgeon doesn’t want to operate on me at this point. He wants to repeat the upright MRI in about six months to check the size of the mass. He expects it to interfere with my coordination; it might be what’s causing my legs to jerk uncontrollably right now.

So, that’s the plan. Follow up in six months. No surgery right now. Wait for the mass/tumor to get bigger and my symptoms to get worse.

Luckily the same cab driver drove me back – he stayed nearby so it wouldn’t be a long wait for me, thank goodness. The office was really way out in the middle of nowhere by city standards. But the ride back was completely different. Isaac was trying to get me to talk, but I couldn’t. I was overwhelmed and upset, and trying (but failing) not to cry in front of this total stranger. It was just a few sniffles, not an ugly cry, thank goodness. 

That evening I got home and received a notice that my primary care doctor is leaving the practice (and maybe even the state). During our last visit in March she had tried to talk to me about palliative care, but said she would wait for me to decide.

Just so I don’t lose my mind, I have to stop pursuing another opinion on the neurosurgery side for the time being. I’m getting a lot of well-meaning advice about how I should just “stay strong” and “keep going” and “don’t give up.” Honestly, though, I’ve been going at this for nearly seven years. This isn’t fibromyalgia, which I’ve had for 20 years – and I’m not knocking anyone who has it, it’s a beast; and this isn’t Hashimoto’s, which I’ve had for 12 years and again I’m not trying to put anyone down, but this is a whole new level of sick. I was able to work through that shit, even if I had to sleep after work and sleep through weekends. My brain is literally being crushed and I have a mass that’s growing in my cerebellum. There aren’t good days and bad days. I need a break from having to be my own advocate for this really rare orphan disease as I drag my sick ass around from neurosurgeon to neurosurgeon to try to convince them that what they are seeing is real (because it’s right there on the MRI).  

In the meantime, I have plenty of other things to keep me busy and other doctors to visit. We just won’t be tapping into my skull right now.

Failure Or Fun? You Choose

I get a lot of flak for my dating life. Well-meaning friends and family have tried to keep up with the names of the men I’m dating, and I tell them not to bother, because they won’t be around long. I also deliberately avoid family photos. It means that I’m often the butt of many jokes, which admittedly sting from time to time. But my refusal to settle means that I continue to avoid divorce, too. I always end up with good stories.

Here’s the perfect museum for me, and people like me: The Museum of Failure. Of course this has to do with the world’s worst innovations and not relationships, but these are gloriously bad. That shocking facial mask?? OUCH. I had my face tased for a test, it’s not pleasant. I would not buy a device and do it willingly on a regular basis. What the what…?

And the Colgate lasagna…well, this year there was an ad for toothpaste that tastes just like a Burger King Whopper, but that was an April Fool’s joke. Trust me, you do not want this unless you are going to be single forever. And not talk to anyone. Ever. And not get laid. EVER. No.

If you haven’t had the pleasure yet, one of the items included in the Museum of Failure is the Bic for Her pens. It’s not because the pen itself is dysfunctional. Bitch, please – why the fuck would you market a pen as only “for her”? Talk about trolling, Amazon couldn’t keep up with erasing the “reviews” fast enough, so there’s a ton of material out there that you can search for, but here’s a taste.