The Remains Of The Day

Yesterday I was picked up by the short bus for back-to-back appointments at the health crisis center. I was the only one on the bus and so I felt comfortable chatting with the driver, unhindered by eavesdroppers or joiners. First I asked if he was a Prince fan. Hey, why not? He didn’t look to be much younger than me, and it’s still big news around here since it’s Prince’s home base. Rumors are still flying and spreading like wildfire. How did he actually die? How will his estate be handled? Will his family completely melt down and will it get ugly like it so often does when there is money involved?

The guy admitted he wasn’t much of a Prince fan. Our conversation wandered around the world of entertainment, and he talked about how dissatisfied he was with staying hooked up with satellite TV, but he kept it for sports. But then he said that he really didn’t enjoy watching any sports either. I asked him if he liked to see games in person as opposed to seeing them on TV and he said he kind of did, but he couldn’t afford to go to games. I asked him if he liked to go to shows like theater or dance, and he said he’d rather be burned alive. He also didn’t really “get into” movies or music.

A 20-minute bus ride isn’t really the place to offer life coaching. I also can’t make people feel what I feel, which can’t necessarily be put into words. A sense of urgency, maybe, or finality? It could be that my bullshit meter goes off a lot more than it ever has before. What I wanted to tell him is that he needs to find his joy. I cannot say this loudly enough, though, but this cannot be confused with finding his next fix. So many men are stuck in this cycle of seeking thrills and the adrenaline wears off and they are onto the next conquest while constantly feeling empty and wondering why they do. Where is their humanity?

Before connecting with The Saint Paul, I talked to a few men through OKCupid by text and/or phone who made excuses to play stupid games with me or not respect boundaries. I changed their identifiers in my phone to start with “Asshole ______” and programmed my phone to automatically send their calls and messages into my spam folders. I don’t even think about these folders unless I get weird calls like I have been for the past three days from recruiters based on resumes I put out in the universe over a year ago when I got laid off of my job in Phoenix before I had my last surgery. I went to update the blocks and thought to myself, “I should check my spam folder.” Lo and behold, there were some messages.

The first was from the Christian asshole who had no respect for my boundaries, and who previously tried to bait me into talking to him again by randomly telling me he had arrived at his hotel room. This time he just said, “Hey stranger how are you?” Of course, it’s been almost three months since we’ve texted, and we never even talked on the phone – but by God, he’s not gonna give up!!!! Answer, bitch!!!

The other two were from the last guy I talked to on the phone and texted with before I met The Saint Paul who abruptly said he met someone and cut off all communication after he tried to sext, which I guessed to be a lie since he was constantly logging into OKCupid still when I had an account before mine was deactivated. After two months of silence, he sent texts saying, “How have you been? Just wanted to say hi.” Gawd, please – I am not new. He didn’t “just” want to say hi. We were not casually keeping in contact and staying friends. He’s trying to keep his options open in case whomever he is currently trying to bang doesn’t work out.

I resisted the urge to reply to both of these messages because really, neither one of them deserve a response. I really, really like this phone I purchased on New Year’s just for this blocking feature alone.

There are a couple of great lines in this song by Sean Rowe that I think applies to these guys (and really, listen to the whole song because it fucking rocks): “I’m a man, I am the world, I’m a man, I am the Lord” and “He puts out the lights and jerks off alone.”

I can’t save everyone. They need to figure this shit out.

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Le Petit Mort

I cried a lot yesterday. I never used to – it was a bragging point for me, that I would shed tears once a year, tops. But yesterday I started by spending an hour on my counselor’s couch recounting my dehumanizing neurologist’s appointment on Tuesday with big, fat tears rolling down my cheeks the entire time. It actually took me days to process what happened in the visit, and is the reason why I still have to write part two now.

I barely got five words out before the tears started. They were angry tears. I’m pissed. It’s not just that the doctor was a dick – because he was – but it’s that his actions could affect my life for the next few years to come. It’s not an exaggeration. I’ve been through this before too. When I had my very first shunt placed and experienced abdominal pains from day one, the neurosurgeon and general surgeon passed me back and forth for a couple of months and blamed each other for causing me pain before finally throwing up their hands and telling me that it was my imagination and there was nothing wrong with me before they had to do a large cut on me two and a half years later and discovered my abdomen was grossly inflamed from an allergic reaction to the shunt. Two and a half years before they admitted there was a problem.

The problem with this neurologist now is that he is saying that I have spasms in my face, and that I just need to stretch my muscles. He’s going to put that on my records too – and the records are going to the NIH and Vanderbilt. Vanderbilt will either take his word as gospel or dismiss his diagnosis and study me, and I have no idea which way they will tilt, but if they decide not to accept my case, it could mean YEARS of more testing before they will consider my case again.

The most insulting part of the visit with this douchebag is that he spent more time demanding to know why I wasn’t on antipsychotic meds. I am having some issues with word recall, which apparently he views as a clear sign of being psychotic. Well, that and I have this condition that no one can seem to name up to this point. He performed physical tests including forcing me to fall, all the while holding onto my hips to assist me to the next starting point because my legs shudder and I list to the right during any physical activity and I wasn’t allowed to use my cane. Then he had the balls to tell me that I was just having facial spasms. I couldn’t believe it. I said, “But you were holding me up because I couldn’t stand!” He acted as if I didn’t say anything.

This neurologist gave me the standard statement on my discharge papers saying basically “don’t come back.” I don’t make this up, people – it was there in writing. The list of doctors who will let me through their doors is tiny at this point. I would have to go through the effort of finding all new doctors to try this all over again if I wanted to get another referral to the rare diseases unit if Vanderbilt denies me this time.

I’m not crazy. I just need doctors to set aside their preconceived notions and overinflated egos and listen to me, because I have had six years of this, compared to their one hour with me and my pages of documentation that they won’t read anyway.

I sat down on Thursday night and wrote this to the doctor and his nurse. I don’t think it will change what goes in my chart but I wanted to say it anyway:

Regarding Dx of Facial Spasm:
Just to be clear, my primary dx should NOT be functional facial spasm. I am preparing documentation to submit to the NIH through Vanderbilt and I would like it to be accurate. My symptoms have always followed the same pattern, in this order: vertigo, fatigue, slurred speech, uncoordinated walking and then ptosis. Every shunt revision has been performed after all of the symptoms have presented indicating that the shunt has clogged or broken. My shunt has been clogged since it was placed on May 11, 2015. The symptoms resolve when I lie flat, which is why I don’t have permanent damage on an EMG (and why the test was unnecessary). When I lie flat, I can feel the fluid move away from the area that it’s pressing on, as if an orange peel is slowly being removed, and the pressure is relieved from my brain. That is why my eyes open and all of the other symptoms resolve. When I am upright, the fluid pools and the symptoms return. I demonstrated this in person on Tuesday, including laying flat as well as turning my head to the far left to open the shunt to drain off fluid so I could open my eyes fully.

The printout regarding functional facial spasm does not address CSF pooling in the brain or how doing stretching of facial muscles is going to help pooling of CSF in the brain. Since I have to travel hundreds of miles in the near future to continue research on my medical mystery, it would be helpful if my records were as accurate as possible and did not contain information that does not apply to me.

Thank you.”

Next week I’ll see my primary doc and will find out if I stirred up any shit or if I have been completely ignored.

What a difference having someone who loves me and who is in my corner makes in my life, though! The Saint Paul is like my hallelujah clouds during a shit storm. I promised not to spill all of our personal details, but there are things that I feel are safe to share. The Saint Paul has a big brain and is humble, which makes me weak in the knees. He’s also a good listener. I mean this in a very specific context: If I say that I need to be touched in a certain way, he doesn’t try to correct me and say that “every woman likes” what he’s doing and he’s not going to change it. Instead, he listens and makes the adjustment, and the reward is that I don’t have to fake anything and do the crab crawl backward.

I don’t know if he noticed last night but my eyes were leaking. It was for a much different reason than 12 hours prior when I was parked on my counselor’s couch, but it felt infinitely better.

Me and Prince

This morning after I took my bath, I wrestled into my purple bra and underwear, shoved my purple long-sleeved shirt over my head and torso and slipped my phone with its purple case into my pocket before heading out the door. I briefly considered taking my purple cane but decided against it because I knew I would be gone for about 20 minutes tops, which is the high end of how long it takes for the CSF to start pressing on my brain and making me wobbly.

Then the news started to trickle in: A dead body was reported at Paisley Park, Prince’s residence here in Minnesota. Just a week ago or less, there was a report that Prince’s plane had to make an emergency landing because he was experiencing some sort of health crisis, but he was resting at home comfortably. It was not a huge leap to assume the body was Prince’s, and it’s also not a huge leap to know that many of us locals are just plain sad about it. Of course he has a large following outside of Minnesota, but he was OUR guy.

Back when my dad was working on making a name for himself as a top-rate hair stylist in the very early 1980’s, he met Prince. My dad loved to name drop. He also thought Prince was a spoiled brat and didn’t hold back on saying so. Prince always traveled with an entourage (read: there was never a time he wasn’t a star). I later bragged to my classmates that my dad talked to Prince. I wasn’t afraid to name drop either.

The movie “Purple Rain” came out and the residents of Minneapolis/St. Paul (commonly referred to as the Twin Cities) were absolutely thrilled to be featured in a movie. First Avenue – “First Ave” if you’re cool – was forever galvanized as THE stage to play on thanks to “Purple Rain,” and who cares that the script was weak? The soundtrack was to die for! I mean, “Darling Nikki”?? Prince was so dirty! He actually talked about masturbation in a song and if any stations played it, the word had to be altered. How could such a short little guy get so many women to throw their panties at him?

When I went to the arts high school for my junior and senior year, I remember a boy who was trying to get into my pants saying to me, “Just give me a dark room and a Sam Cooke album.” I had no idea he was quoting a line from “Under the Cherry Moon,” another low-budget Prince movie that also starred Kristin Scott Thomas, at that point an actress largely unknown to American audiences in a film that didn’t have the commercial or musical success that “Purple Rain” did. I laughed when I finally did see the movie (on VHS tape!) because Prince found a way to infiltrate my love life as I’m sure was his intention all along.

In my senior year at the arts high school, I had a roommate who only played three albums: Nirvana’s “Smells Like Teen Spirit,” Weird Al (I can’t remember the name) and Prince’s “Diamonds and Pearls.”

I don’t remember which album the rumors were flying around for, but supposedly Prince actually recorded a woman getting off and put her “sounds” on a track. This was well before we could actually research anything on the internet. He is well-known for pushing artistic and cultural boundaries. I mean, who else would have a top 40 song called “Cream (Get On Top)”?

In 1996, my boyfriend at the time and I road tripped back from Albuquerque to Minneapolis and after a night of drinking with a friend and my sister, decided to check out Paisley Park. My friend had worked there previously as a security guard and offered to guide us with him driving his car and me driving my car just to show us where it was. Well, my boyfriend told me to pull into the driveway where the guard was stationed; when my friend saw what we were doing, he took off. My sister was pretty drunk in the back seat and pulled a blanket over her head, saying, “If I can’t see them, they can’t see me.” The guard greeted us, saying, “Can I help you?” My boyfriend leaned over me from the passenger seat and slurred, “Is this where Prince lives??” The guard straightened up and said, “I’m going to have to ask you to leave.” My boyfriend persisted, saying, “Can we take your picture??” The guard said again, “I’m going to have to ask you to leave.” In the meantime, my sister Heidi is quietly saying, “Oh god, oh god” in the back seat under the blanket. I backed up and managed to find our way out of the back roads of wherever we were; this was well before GPS and it was around 1:00 a.m. in a very rural area, and my friend was long gone, so it was no cake walk. Thank goodness I have a pretty good internal compass.

The same boyfriend and I relocated to Cincinnati and worked for a box office that was also a Ticketmaster outlet and managed to score tickets to two very different Prince shows. One was in Columbus, Ohio; the entire show started two hours later than it should have and we were already an hour away from home. Start time was supposed to be 8 but it was more like 10 and it was an opening act, then Prince came on at around midnight and played “Purple Rain” and we thought well shit, that’s it – but NO, he played for two more hours!!! The next day was hell because of course we had to work after taking an hour to drive home, but we got to see it. The next show we saw was very different, which was Prince playing with no opening act and playing all of his hit songs, but it was like one 2-hour medley – he had so many hits that he couldn’t play any of them all the way through. I was sitting behind Peter Frampton for that show.

After I moved here from Phoenix last summer, I saw something I never thought I would see, and that is Prince opening Paisley Park up to the public for parties. He has always been notoriously private. I hope that holding those parties brought him some joy. I never thought they would be his final act.

I feel like those of us (and yes, I say “us” because I count myself in this bunch) who do as much as we can as soon as we can somehow have a sense that our time on this earth will end at a much younger age than those who are much more methodical about how they spend their time. The moral of this story is to get your purple on and party like it’s 1999. We will miss this magical man and all of the soundtracks that he has provided for our lives.

I’m Just The Patient

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

Grief and Acceptance

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

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Picnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The 

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Everything But The Gay

Quite frankly, I really like this pope…except for this glaring disparity in his chorus about love and acceptance and how homosexuals are still making a choice to sin. This is why I can’t subscribe to any religion.

 

Pope France made another official proclamation this week, and it was predictably warm and fuzzy. The 256-page document, titled “Amoris Laetitia” (Latin for “The Joy of Love”), calls on Catholic leaders and followers to treat one another with kindness and empathy, and to remain respectful and honest about the challenges of domestic life. It contains…

via If the pope loves gay people, he has a strange way of showing it — Quartz

You’re The Only One Who Can Make You Happy

I guarantee you that as soon as you take charge of your own life, you will be happier. Even as things fall to shit – because they do from time to time – the sky will still be blue, you will still love the taste of _____, you will still love your bed, you will still have your favorite song, those things will still belong to you. You are the captain of your ship.
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Rosie Culture

At one point in our lives, we all experience sadness. Sometimes we know why, the reason is obvious. Someone died, we lost our jobs, everything is going to hell piece by piece. Sometimes we don’t know why, we’re just sad. When we do know and when we don’t, it’s hard to get out of that sadness. It’s really difficult to climb out of that hole.

We can’t find the answers in ourselves so we look for them in other people. We reach out for helping hands, but often times we put way too much weight on them. We take all of the weight off ourselves and lose sense of who we are. All we can remember is the sadness inside, so we look for happiness in other people.

Yeah, other people can help you. Friends can motivate you, family can support you, a relationship can take some of the pressure…

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Careful, Your Old Is Showing

This afternoon I had the opportunity to spend time with my cousin’s daughter. We connected at my uncle’s funeral; the last time I saw her was when she was 3 or 4, and now she’s 24.

Over and over, this meme flashed in my head:
40Now

Here are some of the milestones I hit by the age of 24:
– Moved out at age 16
– Worked two jobs since age 18- Moved to Michigan, New Mexico, Kentucky and Ohio
– Road tripped around the U.S.
– Lived with my first boyfriend

I found myself saying those dreaded words, “When I was your age…” and I cringed every time.

In contrast, this young lady has been living with relatives and doesn’t work or currently attend school. We spoke about what she envisioned for her future, which included dreams of working at a bookstore or a movie theater. I prodded her into thinking bigger – after all, bookstores are becoming obsolete, and movie theater jobs are really more for high schoolers. She admitted that what she really wanted to do was travel the world and learn as much as she can. Thank goodness! That I can work with. I told her about how The Professor works at a law library on a college campus, and we agreed that a library would be a perfect environment for her. She would be surrounded by academics and wouldn’t be required to ask patrons if they would like to upsize their sippy cups for another $0.50.

Another area that I thought would be great for her (before she and I even had a chance to sit down and talk, but she brought up this afternoon) is the tech field. There is still a huge disparity of ratio of male vs. female tech employees and it’s a field that does not often require customer service interaction with the exception of level one support. There are so, so many degrees and specialties in the tech area that she could go into that really, she just needs to pick one and it should not be difficult to make a living.

So again, here is the whole closing a door/opening a window business being demonstrated in real life: I can’t work, but that doesn’t mean I have completely lost my value in this universe. I think I can successfully mentor this young woman and hopefully send her off into the world with some practical skills so she can do the things she thought were only a dream previously.