Month: January 2016

Me and Alan

Posted on by akiwifreund

This is just a tough week. My health stuff has been forcing me to push everything else aside – because as some of you know, you only have enough energy for one thing each day, and that is if you are lucky.

I had to go into the surgeon’s office today like I have done every single day since last Tuesday to get my wound checked and repacked. I’m actually a “super healer” and for that reason also very rare. My body immediately goes to town on closing up wounds and building scar tissue – collagen – so it’s yelling last call and shutting the doors before all of the riff raff has exited. The downfall to that is that my body trapped bacteria in its rush to seal everything, which is why the doc had to make hamburger out of my ass. This is also the reason why, when my body figures out that it can’t physically break every shunt, it resorts to clogging and strangling the drainage catheter. I don’t make keloids. However, I have a huge wad of scar tissue on the right side of my brain left over from the cisternoperitoneal shunts I had implanted there. If I press on that side of the skull, I move the whole mass and it’s very uncomfortable, as if I am moving strings that are attached on the inside of my scalp that reach down into my brain.

While I was getting ready to go to show my ass yet again, I was catching up on the news, and so saw the announcement that Alan Rickman died from cancer at 69. Like Bowie, he was another Brit with loads of talent, adopted and adored by us fickle Americans across the pond. This seemed like another abrupt loss that we didn’t see coming – I mean, some people shouldn’t ever die, right?

Like a lot of people in the U.S., my big intro to this man was the role of Hans Gruber in “Die Hard.” He was such a good badass. I didn’t want him to be killed off. I wanted him to return for every installment of that franchise.

About seven years later while I was living in Albuquerque, my roommate introduced me to “Truly, Madly, Deeply” via a VHS tape she had in her vast movie collection. It was a role that allowed me to see past his villainous past and embrace his gentler side, and roll around in his deep voice like a dog rejoicing in sunshine and grass. If God actually existed and had pipes, I do believe that we would hear Alan Rickman speaking.

In 2003, I moved to Arizona without knowing a single person, without having a place to live and without having a job. (Things were really different back then, kids!) A few weeks after I landed, “Love Actually” was released to the theaters for the Christmas holiday. I didn’t have anyone to go with, so for the first time in my life I went to a movie by myself. I’m glad I did – I liked the movie enough to buy, which rarely happens. But Alan was part of the ensemble cast. He played well the role of a man who was befuddled by the temptation placed in front of him and who ultimately could not rise above.

I know this makes me an oddball (judging by just how popular the Harry Potter series has been), but I could never get into the Harry Potter movies. So many people are mourning the loss of Professor Snape; I will instead choose to remember Hans, Jamie and Harry.

Me and Ziggy

Posted on by akiwifreund

 

Today may have been the first time that I have listened to “Ziggy Stardust” in its entirety since 1993.

David Bowie and I have a pretty solid history. When I was little, I loved the song “Space Oddity.” I don’t know if it’s because I’ve always felt a little out of place in my world, as if I’m living on a different plane than the general public, or quite possibly that I’m an alien trapped in a human body. Whatever the reason, I would sing that song over and over; I have always used singing as a sort of comfort to myself, like the proverbial blankie or stuffed animal.

When I was in elementary school, MTV was born. Our dad was pirating his cable from a neighbor’s wire and we had access to this fabulous station with music and stories 24/7. I loved the really creative videos that gave me interesting visuals to go along with the musicianship. It was the first time I actually saw David Bowie in motion thanks to his new wave pop tunes “China Girl” and “Let’s Dance.” In fact, the “Let’s Dance” album is the first one our father purchased to play on his brand new contraption, the CD player. If we jumped hard enough we could make the CD skip like a record. Our father’s side of the family was blessed with innate rhythm, so we would often have dance parties in our living room, sometimes including our aunt’s five children.

In high school, I joined one of those CD clubs – you know, buy one full price and get 11 more for 1 cent? I got a best of from Bowie that included all of my favorite songs up to that point. It got heavy play. I was listening to it during my first week on Mackinac Island for my second season after I had just turned 19, when I lived above the busiest bar on the island and we had a lot of people coming and going. That is when a guy knocked on my door, started making out with me and coaxed me out of my knickers and my virginity. “Ziggy Stardust” was the song playing when it all went down – I distinctly remember the guy drunkenly saying that he loved that song. I loved that song. Unfortunately, because I had resolved to just getting my virginity out of the way and not trying to make it a movie-type romance, it was not a good experience. He was very rough. He bruised me deeply, my lips were purple and cut. I had bruises all over my ribs, ass and thighs. He was drunk and he doubted it was my first time. My first sexual partner did not care for me or about me, and I paid the price. Well, me and Ziggy. I stopped playing that song.

When I was 22, I had been living in New Mexico when I flew back to be in a friend’s wedding. It was the last time my father and I saw each other. He had cut my hair (the “Rachael”) and we were chatting about his Bowie box set that he received from a client the week before. We also talked about this new cabin Dad had purchased two months prior, and how Dad intended to fix it up and retire there, but that he didn’t think he would see retirement. I told him frankly that I didn’t think he would live to retirement either. He asked me why I said that, and I told him that I couldn’t envision him as an old man, that everything went black when I tried, like a newly washed chalkboard. Three weeks later I had to fly back to Minnesota because Dad died of a heart attack – at the cabin he wanted to retire in. He had gone up there for a weekend by himself to work on a few things and maybe do a little duck hunting. From what we could tell, he entered the cabin, set down his pack, laid down on the bed and died. He was discovered by the local sheriff when my step-mom called for a wellness check after Dad didn’t return home at his scheduled time. The Bowie box set is one of the first things my step-mom thought to give me when she was dividing up mementos between us four kids. She knew Dad and I loved our David Bowie.

I believe in a continuation of the soul when we die. Relating to that, I have a question that I suppose will never be answered, but I’ll ask it anyway. When famous people die, and are so universally mourned, does their soul visit every single person every time they are thought of? Souls must be infinite, but is their energy ever depleted by the millions of times they are tugged and pulled by our sadness? Or do they only have a connection to the people they loved in their lives?

I’ll leave you with my favorite Bowie song, which is his collaboration with Queen. I get goosebumps every time I hear it.

https://www.youtube.com/watch?v=YoDh_gHDvkk

Digging for Gold

Posted on by akiwifreund

This morning, when I retrieved my mail while I was waiting for my sister and her husband to arrive, I received a notice from the Social Security Administration regarding my disability appeal. They said:

*You have the ability to stand and walk without assistance. (That’s a blatant lie – I use my cane for everything.)
*You have the ability to use your hands and arms to perform tasks. (Apparently it’s not a requirement for me to see what I’m doing.)
*You are able to get along with other people for short periods of time. (It’s called Minnesota Nice, bitches.)

“We do not have sufficient vocational information to determine whether you can perform any of your past relevant work. However, based on the evidence in the file, we have determined that you can adjust to other work.”

What would be really helpful is if they included a list of employers who had job offers for me and would not require me to be upright at any time. I can’t see well enough to travel to a location outside of my home, and most employers at least want an interview. So their insistence that I work “somewhere” is pretty weak, considering they don’t have an prospects lined up for me. (I don’t want to hear, “That’s how they do it.” I know they’re assholes.)

The next step is for my attorney to file a request for a hearing, which I understand takes 12-15 months to occur. In the meantime I’ll continue to go to doctor visits and try to find someone who can put a name on this disease and tell me what to expect.

This morning I went to the surgeon’s office at the U of MN to have my wound checked. When he put a fair amount of pressure on it, I started yelping, which led him to believe that there is still some pockets of pus hanging out back there.

Rather than going through the process of shooting me up with Lidocaine and slicing down deeper and purging out more junk, the surgeon took the stick end of a swab and used that to dig around in my wound – think of it as a meat tenderizer, he just kinda made hamburger out of my flesh – without any topical numbing whatsoever. I broke out in a sweat and I had tears rolling down my face. I knew I had to lay still but I was also fighting to get away from him and just make the PAIN STOP.

He said he was stepping out for a few minutes to allow the bleeding to die down; about 10 minutes and a good, sobbing cry later, his nurse came in to re-dress the wound. I’m glad I had that time to myself.

 

 

That Girl Is Poison

Posted on by akiwifreund

Recognize this phrase? I have a station set up on my Pandora titled “New Edition,” and since some of the members of the singing group New Edition split off and formed Bel Biv Devoe, the song “Poison” comes up on my play list. Bel Biv Devoe sang about the dangers of getting tangled up with a woman who was bad news; however, it’s not just romantic relationships that suffer when someone is nasty or devious – friends can be poisonous too.

I am eternally grateful to the friends I have made over the years who tolerate my weirdness and bluntness. Without a doubt, I am humbled by the friends who have mopped and sanitized my house when I have returned from the hospital. I am indebted to the people who have shuttled me around to doctor appointments and grocery store runs, and who have replenished my stock of food and supplies. I have tried to be a good friend in return when I have been able to, which admittedly has been very infrequent for the past 5.5 years because I can’t seem to stay well enough to be out of bed for any length of time.

Unfortunately, because I have the reputation of being a good listener and the voice of reason, my bedridden status has trapped me into being something of a therapist for some. One friend helped me get to a doctor’s appointment about five years ago. This woman and I had become friends back in 2006 when I was working a couple of jobs to pay for my second trip to Europe. That one ride of eight miles nearly cost me my sanity.

Because she found out that I was stuck in bed when I called her to help me get to the appointment, I believe she saw it as an opportunity to unload all that was bothering her – after all, I didn’t have anything better to do, right? This friend was going through a nasty divorce. She would call me at all hours nearly every day, crying and asking me what she should do in certain situations. She would never actually take my advice.

Our interactions became more strained. I finally resorted to telling her, “I don’t know what you should do” every time she called with a new crisis. She switched to texting me instead of calling me. I’m not sure if she thought my answer would somehow be different. Just for the record, it wasn’t.

This woman had a good heart, and I did get a ride from her when I needed it most. I just did not think that I was forever obligated to take on the stress of her failing marriage. For that reason, I cut her off completely. Subtlety wasn’t working, and telling her I was exhausted and stressed from fighting to be heard in doctor visits had absolutely no effect. I feel a twinge of sadness when her birthday shows up on my calendar, but I know that if I pick up the phone and wish her a happy birthday, the cycle starts again.

Another woman I became friends with was introduced by a mutual friend. We became acquainted after we spent a holiday together; I brought a movie that she had watched many times in her native country as a young girl, and she translated the film for us as it did not have any subtitles. I’m going to christen her Ms. Lederhosen.

I met Ms. Lederhosen as she was going through a nasty divorce with her second husband. I had suggested we get together for movies or nights out because it seemed like she needed to do things that would distract her from all of the emotionally draining stuff she was going through. Unfortunately, it was all she would talk about. I’m not exaggerating when I say that. I could say something like, “This tomato soup is good.” Ms. Lederhosen would reply by saying, “Oh, R. (her ex) likes soup too. You know, when we were married, he used to make me take care of his daughters, but they were lazy and did not like me. I would tell them to do something and they would go to their dad and he would tell them they didn’t need to do it.” It’s how every conversation would go. Everything tied back to her ex, no matter what I said, no matter what I tried to talk about.

I remember one time we made plans to see a movie. When we picked our seats out and got settled with our beverages and snacks, she started talking about the ex. The lights dimmed and the movie started; Ms. Lederhosen was not letting that stop her. Other patrons in the theater started saying “Shhhh!” loudly, turning towards us. She wouldn’t shut her trap. I told her that we should wait to chat until the movie was done. She kept talking in a loud voice because she had to finish that story. Well, she finally did…and then throughout the movie, she ran a commentary on what was happening on the screen. At that point I made a mental note to never see another movie in the theater with Ms. Lederhosen.

The ex was dragging out the divorce, filing extensions and demanding spousal support. Ms. Lederhosen was constantly calling and texting to rehash what he had done. At one point she asked me to proofread letters and documents for her because they were going to be used in her case. I would always set aside what I was working on and comb through her submissions because I knew how picky judges could be.

Ms. Lederhosen finally decided to pursue her U.S. citizenship. She didn’t have many friends, so she asked me to prepare a letter of good character for her attorney. Again, I set everything aside and whipped together a professional piece to convince the Court that she was a productive member of society.

She didn’t care for her job or boss, so Ms. Lederhosen sent me her resume so I could send it out to my contacts and enter it in my employer’s database. She wanted to respond directly to her ex’s demands through family court but didn’t want to pay her attorney to do it, so I arranged for a friend who was a paralegal in family law to assist her.

Ms. Lederhosen met a man through a woman who facilitated a social group for foreign-language speakers. I had hoped that meeting someone new would calm her down regarding the ex and encourage her to discuss other items of interest, but no. She even told me that her new man was complaining that she was too focused on the ex.

I was able to meet the new boyfriend when Ms. Lederhosen brought him and her little sister over to my house to visit; it was her sister’s first time in the U.S., so I made an effort to speak slowly – her English was good, but there is always a huge adjustment period when anyone is suddenly immersed in a country where the language is not their native tongue. Often Ms. Lederhosen would interrupt to talk about her ex. At one point, her current boyfriend grabbed her face, squeezed her cheeks and said “Stop talking.” She didn’t, of course. Her sister got completely put off and eventually just fell asleep on my couch while the boor hijacked the conversation.

A few months later, I had reached the point of blinding pain with my shunt – I had developed an uncontrollable leak. Ms. Lederhosen had indicated that she was at her boyfriend’s house but that if I needed a ride to the ER, she was more than willing. I took her up on the offer. They didn’t end up keeping me to bring me into surgery as I had hoped, because at that point they wanted to figure out which parts of the shunt I was allergic to, which would take months. They sent me home with big bad painkillers instead.

Facebook can make or break friendships, and in our case, it broke ours. Actually, for me it was the last straw. I had posted a story about a product that was being given to girls in sub-Saharan Africa to allow them to continue safely attending school during the bleeding days of their menstrual cycles. This charity was distributing silicone cups that could be used to collect the fluid for up to 12 hours and then be emptied and washed in private. Well, Ms. Lederhosen did not like that at all.

She hijacked the post by first saying that she would never want to use a product like that and that she was perfectly happy with her birth control pills. I explained that birth control pills were not an option in this region, and that it was a much safer alternative for the girls instead of their normal methods, which included stuffing their bodies with dirty rags, newspapers or mud. Ms. Lederhosen said she asked her boyfriend’s mom, and she agreed that she wouldn’t use a product like that either, and they were stupid for not using birth control pills. I explained that in this region, pills were not readily available or transported easily, and not everyone could or should be on hormones, and that the girls just really wanted to attend school and the cups were a viable option. Then Ms. Lederhosen posted a huge paragraph about how American women are stupid, fat and lazy, and she was able to lose weight by eating organic foods and exercising (which had nothing to do with what was being discussed).

I blocked her on Facebook. It’s no wonder she has few friends! Unfortunately, my phone at the time was not able to block calls or texts, so for two days she sent me all kinds of nasty messages about how she was prettier, smarter, more successful and thinner than me. Ms. Lederhosen told me how I was jealous of her relationship with her boyfriend, and how my college degree was the equivalent of elementary school in her home country. I sent back one message saying I was not interested in competing with her, and her messages just got nastier. She told me how she was a much better friend than me because she drove me to the ER that one time; of course, she conveniently forgot about all of the ways that I tried to help her when she needed it. Finally she stopped and went radio silent.

Two months later I got a card without a return address. I opened it to discover it was a note from Ms. Lederhosen, telling me she missed me as a friend and that we should be friends again. I didn’t have a return address for her and so couldn’t send anything back, and her info had been deleted from my phone long before that. A week later I got a text message from her saying that she didn’t hate me anymore and that we should be friends. I again told her that I did not want to compete with her, and that she said horrible things that made it difficult for me to want to be friends with her. Well, that just set her off again – 16 messages of vile, nasty words.

Around Thanksgiving of 2015, I received another text from her. Ms. Lederhosen said that she missed me and that I probably still had some bad feelings, but she was there for me if I needed her. The response that I didn’t send but really wanted to? No fucking way.

Pain in the Ask

Posted on by akiwifreund

Every time I watch this clip, I giggle. I hope you will too.

https://www.youtube.com/watch?v=5JRazx66c7c

 

Today I had a little procedure in the surgical area of the University of Minnesota. Truly, it was little. But since 1/1/2016, I’ve been in a lot of pain because I developed a boil near my tailbone as a result of laying in bed for 8 months straight. Sure, I get up once in a while, but I’m in bed at least 22 hours of every 24 hours.

We thought it was the trucker’s cyst, but luckily it wasn’t – it would have taken a lot more cutting to pop that meatball out. First I met a PA who turned out to be very, very new (I’m thinking it was his first day or first week because he was asking where everything was for supplies). I didn’t joke with him because I realized how new he was and I didn’t want him to lose his place in asking me questions; a memorized script that one can skip around out of order comes with experience, and he obviously wasn’t at that point yet.

The general surgeon came in, and damn, he was cute. He took a look at my ass, and I made a joke about having to show my ass to everyone. Hey, I worked my way through St. Joseph’s Hospital in Phoenix – may as well start on Minneapolis now. He asked me how I felt about them cutting and draining the problem area. Of course I agreed – I told him to exorcise the demon. Everyone stepped out of the room to enter notes in my chart.

The nurse came in with the PA and she and I chatted while they got all of the supplies ready. Then the PA had the task of shooting me up with Lidocaine. His hands were shaking like the dickens. I honestly don’t know if it was because he was making an effort to spread the juice while the needle was inserted, or if he was just scared shitless of shooting up my left cheek. I want to give him the benefit of the doubt; besides, whenever I get Novocaine in my mouth when I’m getting worked on by a dentist, they do this crazy thing where they flap my mouth around while doing the injection – maybe to avoid getting a big old bubble of juice and instead encouraging it to go into the surrounding area? I got about 8 shots.

They left again, and in about 15 minutes they returned to do the cutting. The doctor talked the PA through doing the incisions. When he said, “You’re going to need to go deeper,” I was just at the point of yelling. They had warned me that the acidity of the bacteria that was pooling in this spot would make the Lidocaine less effective, and they were right. The nurse told me I could swear. I told her that my inner truck driver was coming out and I was getting ready to recite every nasty term I could think of.

They packed the area and then covered it with a large patch. The doctor asked me where I lived and then told me it would be a good idea to return to his office every day and his nurse could repack the wound, at least for the next week. At some point they may even try to get me to pack it myself, but it’s in a spot I can’t exactly see, so that will be a challenge.

In the end, they only got about 5 ccs of fluid out. What??? That tiny bit of junk made me feel as if an ostrich egg had been laid under my skin.

This is going to be a problem for date #3 with Nashville. We were supposed to get together Monday for a day date after he finished his overnight shift, but instead, I have to get my ass packed. By Monday it will have been three weeks since we last saw each other and I don’t want to delay another week, but I don’t think I have a choice. Plus there’s going to be no monkey business while I’m dealing with this wound. I can’t get laid and it makes me want to kick some ask.

Unintended Consequences

Posted on by akiwifreund

I keep a reference book from the days that I was studying to be an RN that has tons of diseases and explanations – kind of an encyclopedia of conditions. I realize that we have the internet at our fingertips, but sometimes I whip that book out and read it for fun.

However, this week I went directly to the internet. I started having sharp pain near my tailbone and discovered a cyst that had formed that’s just about the size of a ping pong ball. I’ve had this happen once before, about four years ago. The cyst went away on its own. However, I’m keeping an eye on this one, because I’VE SEEN THE PICTURES. DAMN THE INTERNET.

If what I’m seeing is correct, I’ve got a pilonidal cyst. Here’s the funny part: usually it happens on hairy truckers. No joke. They sit on their asses all the time, and the hair on their ass gets crushed into their skin. Sometimes the hair actually punctures the skin and is pushed down into it, and all that pressure and heat makes it a breeding ground for bacteria. And we all know those truckers can get sweaty from all that time on the road. That’s why truck stops have showers.

Number 1, I’m not a trucker. Number 2, I don’t have any hair anywhere (except my big toes, sometimes). However, because I’m on bed rest for about 22 hours of my day for the most part, it’s probably still a nice warm and moist place for bacteria to proliferate.

I’ll never know what actually prompted the start of the cyst. I can tell you that it’s as painful as it sounds – I’ve got a pain patch slapped over the top of it right now. I also know I have to be careful in watching it because if this sucker doesn’t go away on it’s own, I have to have it surgically excised.

I don’t have much of a choice regarding laying flat all day. It helps to take the pressure off of my brain. But just like astronauts being in space too long and having things like osteoporosis pop up, there’s stuff you don’t think about happening because of being bed bound until it actually happens. For instance, besides this cyst, I have braces that I have to wear for my legs when I am laying down. The tendons in my legs and feet are tightening and shortening from not being used. If I don’t wear the braces, walking becomes very painful.

So, to wrap this one up, I just wanted to let you know that I’ll be watching my ass for the next week.

Can You Hear Me Now?

Posted on by akiwifreund

I recorded a 20-minute interview with Daniel (“Danny”) Levine about this blog and this crazy life. I’ve only been here for six months and already the Minnesota accent is creeping back in. There were a couple of times where the sound dropped, but you get the general idea.