#St. Paul

Paper Doll

Posted on by akiwifreund

Warning: Read at your own risk. Adult situations discussed.

Okay, so we know about Mr. Friday Night and his toe and pantyhose fetish. I did him a solid and dressed up and painted my toenails to his specifications. It wasn’t that big of a deal as far as fetishes go – not like he asked me to shear a sheep so we could screw on some real lambswool.

Another guy on OKCupid caught my eye. I was actually looking forward to chatting with him because according to the algorithm, we answered over 90% of our questions the same (or similar enough). His profile had enough funny stuff to show that he had a good sense of humor, and we had a love of the arts, board games and museums in common. Pretty promising, right? So I struck up a conversation with him, and during the course of chatting, I discovered he was a brass player. I’m going to christen him Gabriel.

Gabriel wasn’t very forthcoming with info about himself when I would ask him open-ended questions. He would give me one or two-word answers, or it would take him a long time to answer. Then he started dipping his toe into the sex pond, and he couldn’t stop talking.

At first Gabriel wanted to know if I liked to cuddle, and I answered yes. Then he started asking me about my favorite sexual acts. I informed him that I had a FetLife page and he revealed to me that he did as well, so we checked out each others’ pages. Gabriel then confessed to me that he wasn’t really single, like his profile said – he was separated, and he claimed that he was living with his parents and his wife and kids were living in the house. However, he assured me that there was no going back and that divorce was a sure thing. We talked more about our likes and dislikes, and Gabriel admitted that he had only been intimate with three women. My number is nowhere near his – I mean, I have never been married, and for the majority of my adulthood I haven’t been in a relationship. We had a chat about STDs.

Eventually we worked out a date night. At first it was on the premise of cuddling and a movie. Then it evolved into him asking if we could do certain things. Gabriel also specified what he would like me to wear – which included a skirt, pantyhose and heels. Luckily for him I had gotten two pairs of pantyhose because of Mr. Friday Night, so I could accommodate that request. I told Gabriel that if his penis was going anywhere near me, he had to tell me his last name.

The first time we got together was very nice. We did cuddle, and we both got some action. He reminded me a lot of the guy who plays Kelly Severide on the show “Chicago Fire,” though a bit beefier. When we were done messing around, we laid in bed and laughed and talked, and Gabriel did his impression of Christopher Cross/Michael McDonald/Peter Cetera, which he admitted sounded like the same guy. We discussed his frustration at not being able to find a job that matched his degree, and I offered to put some feelers out with my friends. It’s just the sort of exchange you’d expect with friends with benefits, which is what I assumed this would be, since I couldn’t go on real dates with him.

The second time he came over, Gabriel asked if I could do some very specific things he wanted to try that he had listed on his Fet page. I will just be clear and say that it was stuff he wanted me to do to him, not with him. Gabriel also asked me if I could wear a specific undergarment, and since I had it in my possession already, I obliged. He asked me if I would ever try some of the things that he wanted to, including three-or-moresomes and anal sex, and I told him I had tried them – many times – and I wouldn’t do them anymore. First, I’m not attracted to women. Second, my health problems extend to my bowels and anal sex is painful. So keep in mind that this conversation about my hard limits happened face to face. Gabriel left after what he wanted to happen happened. I gave him a smooch and told him it was okay, he’d get me the next time.

Between the second and third dates, we chatted via text a few times, but it was only late at night, and he would only talk about sex. Gabriel would ask things like, “Do you ever just walk around your apartment naked for no reason?” I told him no, it was never for no reason – usually I was changing clothes or hopping in the shower. Then he would ask me if I was playing with myself. I get weary of being asked the same questions every time a guy talks to me, so I stopped playing along – I didn’t pretend that I was doing that just to make him happy. I even reminded him a couple of times that I was a whole person, not just interested in sexual acts. I mean, for Pete’s sake, we had a lot of common interests.

For our third get-together I didn’t have to wear any specific clothing, thank goodness. We messed around (no p-in-the-v, but honestly, that’s not the only sex act as far as I am concerned), and had another talk about my hard limits. Gabriel said that the next time he came over, he thought it would be nice to just watch a movie, and I agreed.

Gabriel’s texts became further spaced out; sometimes I would send him a quick note to joke about something that popped up in the news that we had discussed. He would only text me to ask me if I was playing with myself. Then he started only asking me one word at a time: “Anal?” “FFM?” “Swallow?” My tolerance level is pretty low, especially if I have to repeat myself. I know what guys think, which is that if they ask the same question enough times, eventually they will wear us women down into agreeing to do stuff. After I said no, Gabriel had the balls to tell me that maybe I would like that stuff if I tried it – as if our numbers were reversed and I had had three partners, and he had…not three.

I finally texted him back to say, “Look, I have tried what you have listed, and I’m not going to do it.” Then I told him, “I feel like we get along well enough, but now you’re listing stuff that we have talked about that I’ve already told you that I am not interested in revisiting. I don’t want to hold you back if you want to find someone to help you check these things off your list.” Gabriel hates anything that is not “Minnesota Nice,” meaning he would have preferred me to agree to do these things to fulfill his porn-driven fantasies, or to lie to him and tell him that I would do them eventually. So Gabriel has cut off all communication to me.

My prediction for Gabriel: He and his wife are going to resume their marriage “for the sake of the kids” after he has checked everything off his list. And they’re going to hate each other.

I have been chatting with another guy from OKCupid who had actually hit me up on FetLife first. Here’s the kicker: he has a foot fetish too. So one of the first things he asked me to wear if we met is a skirt, pantyhose and heels.

My only conclusion I can come to is the reason these poor, deprived men in Minnesota crave heels and pantyhose is because it’s thirty below zero all of the time and it’s not safe to walk in heels in snow and ice. Snow boots are decidedly less sexy.

Please enjoy this song by one of my favorite singers, Rachael Yamagata. Every time a man asks me to dress up to his specifications, I feel like a paper doll.

Netflix ‘n Chill

Posted on by akiwifreund

Minnesota is a pretty great state to live in right now. There’s lots of resources – especially in the Minneapolis/St. Paul area – and a push towards smarter and greener living. Unemployment is super low. I have forgotten what it’s like to be around nicer people (rather than worrying about being shanked), so I find myself thinking often, “Wow, that person is so nice!” Don’t worry, I know about “Minnesota Nice” – but usually I’m on the giving end of it, not the receiving end. On paper, it would appear that I wouldn’t have any trouble at all finding a match, because there are a good number of people with shared values.

However, I’m that person. I can’t go out on dates. I can’t join someone for a bike ride and a hike. I can’t say that I have to work until 6 pm, and then can we meet up for dinner later? I can’t go out on multiple dates with someone and then decide he’s not a match for me, and never have him know where I’m living in case he turns out to be stranger danger.

My only option left, really, is to tell dates they can come over to my place to, you know, watch Netflix and chill. Except every one of them thinks that I want to bang. I don’t!! It looks bad, I know. My apartment is a studio so the couch I have for visitors is in very close proximity to my queen-sized bed, so even if I told a date that I didn’t want to have sex, THERE IS MY BED, calling like a siren song.

I want to go out with men who are active and enjoy movies, wine tastings, art festivals, live theater and traveling, but those are the ones that do a crab crawl backwards away from me. Instead, I get messages on OKCupid from guys like Alex (age 28), who wrote two sentences to me, didn’t answer any of my questions, and then a week later said, “Hey, how about after work we have a lazy evening on the couch and watch shows?” I said, “You mean, ‘Netflix and chill?'” He said, “Does it sound better if I say that?” and I said, “No. I’m not interested in sextracurricular activities.”

On the flip side, someone whose junk has been up close and personal texted me a hello and asked what I was up to, then said that watching a movie sounded really nice. I asked if that was code for Netflix ‘n chill, and he said, no, he really did want to veg out and watch a movie. See? Sometimes men can act like normal human beings and not try to hump everything in sight. I’m guessing we have to put you on a 60+-hour-workweek first, though.

So, anyone wanna come over for Netflix ‘n chill, but not?

How Now, Brown Cow?

Posted on by akiwifreund

I saw my 42nd doctor today. I always start my introduction off the same way for everyone: “So, are you up for a challenge?” I get the same reaction every time, like there is no way I have something they haven’t seen yet. I feel their need to pat me on the head and tell me I’m being cute, and they’re waiting to smirk and say, “Oh, it’s just a migraine, sweetie.” But then they start to sputter, or stutter, or ask me the same question six or seven times. Then they leave the room. Then they come back in (as if they haven’t just gone into their office and said “Fuck” a few times, noiselessly, before putting on their game face and walking purposefully back into the exam room). This doctor was no different.

He said, “I just don’t know what you have. I have never seen this before, but you know, I’m just a neurologist. I wouldn’t know what to do with you.” I said, “Study me.” He said, “I wouldn’t know what to study.” I said, “But these are neurological issues. Someone has to be willing to think outside of the box, like keeping me upright for scans instead of laying down.” He said, “But I don’t know how to help you. I think you should go back to the neurosurgeons.” I said, “Okay, can you talk the neurosurgeons at the U of M into taking my case?” (He is, after all, a University of Minnesota neurologist.)

He said, “I’ll just send them a referral like normal.” But this isn’t normal. None of this is normal. I wish that I could make my surprised face now (even if it’s an act), but, you know, my face is half paralyzed. I really had to fight the urge to have my medical transport person make a pit stop at a bakery so I can buy a chocolate cake to put my whole face into in the privacy of my apartment. I’m past crying about it. It’s just exhausting. How am I supposed to carry on without even a small glimmer of hope? The doctors tell me not to give up. That means “fight,” right? But they don’t want me to fight with them, just the ever-elusive “someone else.” I often wonder what they would do if they were me.

Today wasn’t a total loss, though. My sister and I went to see a dermatologist at the same time early in the morning and then made a pit stop at her place to pick up her two dogs before she went to work, and as usual, the smaller female managed to get loose and run free. She’s some sort of terrier mix with short, wiry hair and sweet brown eyes that my sister and her husband got the day I moved to Minnesota. The male is some crazy mix of beagle and who knows what else- maybe Saint Bernard? – he’s got kind of a big body but pretty short, stubby legs, and the saddest face ever. The male also does not move fast for anything. When he sees me, he knows I’m going to rub his belly, so he doesn’t even bother coming over to me first. He just throws himself on the floor and raises his front paws, like it would be way too much effort to walk a few steps, and I definitely should not miss out on scratching his armpits. So while my sister was trying to lure the female back with treats and we saw her bounding through some brush like a jackrabbit, the male saw me from about 50 feet away and launched himself towards me near the parking area. I swear to you I have never seen him move like that with his ears flapping in the wind before, and I probably never will again. The female heard me calling for her and she buzzed right past my sister and threw herself down for a belly rub too. I really wish I could have pets. I’m lucky my sister works across the street and I can go get some fur therapy when I have a crappy day. They were both rescue dogs, so it warms my heart that they love me enough to come to me too.

Today my sister drove my car so that I could clean it out a bit before listing it for sale. Let’s be clear, here: I don’t want to. I love my car. I did a lot of research before I bought it, and it has all of the features I wanted and nothing I didn’t. I had planned on keeping it for at least a dozen years and so made sure it had the best possible engine for its price point. I got a platinum extended warranty. It fits in every parking space. It’s a hatchback, so even though it’s in the car category, it sits up higher like a small pickup – that means it’s super easy to get in and out of. I could go on and on. Cross your fingers for me for a quick and successful sale, because girlfriend’s gotta live off that money for the next twelve months, know what I’m sayin’?.

Front

What’s Going On With Your Face?

Posted on by akiwifreund

This morning I woke up and said to myself, “I’m going to urgent care.” Not for fun, mind you – I have been having horrendous heel pain in my right foot and haven’t been able to bear weight on it; I couldn’t even stand to rest it on top of my covers to sleep at night. Nothing has helped either, including ice and ibuprofin. Getting my shoes on took seven tries and a few tears.

I also had conversations I’ve had many, many times. The first was with the nurse. As we were talking about my meds and allergies, she said I was lucky to have a cane handy to help me with walking through this problem, and I told her I use one anyway because of vertigo, and warned her that I could feel the CSF pooling and starting to press on my nerves. I had been laying down until right before the cab picked me up, so I looked normal when I first hobbled through the door. She was watching my face as it became paralyzed and asked, “So you have Bell’s palsy, right?” I answered, “No, it’s not that, and it’s not Myasthenia Gravis or anything else you’ve heard of. It’s a rare condition without a name and I can’t get a diagnosis. But that’s okay, I really want to find out what’s happening with my foot right now, I don’t want to unload all of the stuff about my CSF issues on you.” We finished up with the vitals and she left to get the doctor.

He came in, introduced himself, and said, “I understand you’re here for foot pain. My nurse filled me in with that and gave me background on your really big issue. What’s going on with your face?” I explained briefly that it is yet undiagnosed, and that the latest of a series of rejections from the Mayo Clinic to see me came from a neurologist and a neurosurgeon stating that what I had is so rare that they wouldn’t be able to diagnose me or treat me. But then I said again, “It’s okay, I don’t expect you to do anything about that. I would really like to try to figure out what is wrong with my foot.”

I went through a couple of cab rides for nothing, it turns out. The x-ray didn’t show anything wrong with the bones and that’s as far as they could go with imaging. The doctor offered me a walking boot, but I declined – I don’t want to set my foot down at all because of the pain, it’s not a stability issue. Well, okay, that’s a problem too because of my vertigo and penchant for leaning to the right because of my imbalance, but we’re not trying to stabilize the bones. He also offered me some opioid painkillers but I declined those as well. His conclusion: it’s a nerve problem. Unless there’s something wrong with the soft tissue, which can only be checked by MRI. Either way, I have to wait until Monday to see what the next neurologist says.

For the entire time that I was dealing with that, I was getting bombarded by texts from a guy I met on OKCupid. He is an H1B transplant from India whom I will call Quiz Master. Quiz Master is quite a bit younger than me – 28 years old. At first when he approached me online, I was extremely cautious because I am not attracted to younger men at all. He seemed okay, though, because he was actually asking thoughtful and non-standard questions, and he wasn’t trying to get in my pants or show me his penis. Still, though, I knew that culturally we would be very different.

Quiz Master would ask me questions, sometimes four or five in a row, and I would try to answer as quickly as I could, but I’d only be able to type up one answer and he would throw another five at me. He would then say, “But what was the answer to the question I asked you before?” I’d have to scroll through a bunch of stuff to figure out what he was talking about. It was very tedious. And then he’d say, “Now you have to ask me something,” while I was still trying to answer his questions that he insisted that I answer. Sometimes he would message me days later and say something like, “I’m still waiting for your answer.” A couple of times I had to tell him I had no idea at that point what he had asked because we had moved forward with the conversation.

Against my better judgment, I agreed to give him my cell number, because, again, he wasn’t trying to get in my pants. Quiz Master asked if we could meet, so I told him why I wouldn’t be able to go out on a traditional date, though that would be my preference (as opposed to having a parade of stranger dangers through my apartment). Quiz Master first told me that if I went to bed that night, every day that I got up I would feel better and better until I’m cured. I told him that applies to things like having a cold, but has absolutely nothing to do with what I have going on. Then he told me that I had to be positive and that if I keep up my hope, I would be fine. Rather than telling him to screw himself, I told him that he should try that experiment, but that his mission was to make his eyes turn from brown to blue. If he didn’t succeed, then it would be his fault for not hoping hard enough.

So Quiz Master said fine, let’s not talk about that anymore, and then he proceeded to bombard me with questions again. I think he was really embracing his role as an enthusiastic questioner way too much, because he would ask things like, “Are you different from when you were little? Why and in what way? Do you think growing up made you think of things different? How do you think you think different?” (I’m slightly improving the grammar he used – you get the picture.) I finally asked for a break because I really don’t like to text. Quiz Master said, “Oh, but we’re getting to know each other. You are doing fine.” That really grated on my nerves because I wasn’t asking for his approval on my texting skills, I just wanted to take a break from the hundreds of questions he was insisting I answer.

Since Quiz Master also found out that I don’t work, he started texting me all day, every day, for about five days. If I didn’t respond right away, he would send me repeated messages saying, “What are you doing right now?” I started avoiding reading his messages for a few hours so he couldn’t see the “read” stamp. It was taking just way too much effort – he would hound me if I answered, and he would hound me if I didn’t. Then Quiz Master started asking if he could come over. Actually, he was asking if I could ask my parents if he could come over. I was starting to lose my cool. I said, “I don’t live with my parents and I never said that I live with my parents. Why do I have to ask my parents if it’s okay for you to visit?” Quiz Master said that he just assumed that I did because I’m single. <insert eye roll> Huge cultural gap right there.

Then he switched up his questions, saying that he wanted to play a “game” with me: we could say an actor’s name, and see if the other person is familiar with the actor and if they like them or not. I only tolerated about three actors from Quiz Master and then said I don’t like texting all day, every day, and that I wanted to take a break. Again, he told me I was doing “fine.” Finally, I told him that I don’t like to constantly text anyone for hours, and that I wanted to not text with him for a few days. Quiz Master said he wanted to call me then. I told him no, that I didn’t want to talk at that point either, and that I really wanted to get some stuff done.

Quiz Master waited all of twelve hours to start hounding me again. Did I get done what I wanted to do? What was I doing right then? How about a few minutes later? Why wasn’t I answering him???? He’s JUST TRYING TO GET TO KNOW ME. I’M DOING FINE. DID I FEEL BETTER? I MUST BE FEELING BETTER BECAUSE I WENT TO SLEEP. I HAVE TO TALK TO HIM. He was getting really, really demanding.

I started getting a feeling like I couldn’t shrug his arm off from around my shoulders, weighing me down like a yoke. I couldn’t breathe. In fact, I was suspicious that he somehow got lodged UP. MY. ASS. And I just do not enjoy that at all.

Quiz Master bombarded me with texts the next morning again, asking me exactly where I was and what I was doing. I told him that I was at a doctor’s appointment. He offered to pick me up so we could meet and visit. I told him no, I was exhausted and uncomfortable, and did not feel that it was the best time to meet. He told me that it would be a good time to meet. I told him no, I didn’t want to. Then he started asking me the stupid actors’ questions again and insisting that I ask him more questions. I told him that I needed to rest and I didn’t want to text anymore. Quiz Master gave me six hours, then started in again. I seriously wanted to kick him across a field like a football.

This morning, when I got the now-familiar text telling me to tell him exactly what I was doing, I responded by telling him that I no longer wished to pursue any relationship with him, and that I wished him well. Quiz Master then sent me 16 texts about how he was respecting my space but I had to answer him, and we were just getting to know each other, and he still wanted to come over – oh, and, did I think he was trying to have sex with me? I simply wrote back, “Knock it off.” His last two messages to me were that he was assured that he didn’t do anything wrong, and that he wished me a good day.

Obsessed much, Quiz Master? I suppose I’ll have to be looking over my shoulder for a while. Good thing I don’t have a pet rabbit for him to surprise cook for me.

Cupcake or Cesspool?

Posted on by akiwifreund

I reactivated my profile on OKCupid in a fit of…well, frustration, loneliness and boredom, I suppose. I hate being stuck in my apartment. I used to travel extensively, host happy hours, go to art and music festivals, take swing dancing lessons and volunteer. I know it’s possible to find someone who has the same interests, especially since it’s so easy to connect with shop for people over the internet. I’m not looking for someone to be my sole source of entertainment and am trying to keep an open mind because of my unique situation. But I’m also reminded of why a lot of these guys have been on the site for over a year, or two, or four – because they can’t act like normal human beings.

Following are some of the exchanges I’ve had, word-for-word, in the last 24 hours.

First there’s the one who was born the year I graduated high school:

23-Year-Old Guy: Your really cute! 🙂 How are you?
Me: Thank you, you’re really cute too – but I’m much older than you!
Him: That’s fine with me! Are you okay with it?
Me: Well, I am kind of laughing – when I was 22 I was dating a 48-year-old. Now that the roles are reversed, I’m not so sure about it.
Him: So where do you work?
Me: I don’t work because I’m dealing with some major health issues.
Him: So you dated an old man when you were young? LOL
Me: I did! He was pretty wealthy so I joked that he was my sugar daddy, but I only let him buy me dinners.
Him: Haha your kinky! So how was the sex?
Me: What??? Why would you say I’m kinky?
Him: Did you guys have sex?

At this point I let this conversation drop. I’m still not sure how letting someone buy me dinner translates to kinkiness, but I didn’t feel like I had the patience to find out.

So here’s one from someone who is clearly going to try to scam me out of my life savings:

45-year-old Man from Louisiana (supposedly):
Him: Hello, how are doing today
I am Kelly William from United State and you
like to get acquaintance with you

Blocked. It’s obvious there’s some Google Translate going on there.

Here’s a quick one from California:

25-Year-Old Guy: Your a sexy gorgeous mama! 😉 U got kik?

<sigh> No, little boy, I don’t. I’ve got OKCupid and I don’t want to see your penis.

This one claims to be currently in the U.K., working on a film project, but due back in two weeks:

43-Year-Old Man: What are you looking for on this site? As for me I’m looking for a relationship that will lead to marriage.
Me: I would like a serious relationship too, but only with someone who is truly a match.
Him: Yeah you are right we can get to meet soon, what are you looking for in a woman? As for me am looking for honesty and a GOD fearing woman, a woman that is caring and knows how to treat her man right.
Me: We are going to seriously clash on religion. I don’t believe in religion or “God.”
Him: Thats okay. When I get back we can meet. Where do you live?

Um, no, Stranger Danger – go back to your 1950’s household. There’s a FetLife group for that and I’m not in it. I’m also not looking for a woman.

How could I possibly turn the next one down? He’s very determined:

44-Year-Old Man in California: Your attractive looking and I’m interested in you. I am willing to relocate.
Me: Thank you, although we would clash on religion. (Another bible thumper.)
Him: I would go to your church with you.
Me: I don’t believe in religion or church. (WTH, man, read my profile! I spell it out.)
Him: I would shovel snow for you. I would buy a snowblower for you.
Me: That’s not necessary, I don’t have to take care of snow removal.
Him: We could go to dinner out or we could order pizza.
Me: Is dating difficult in your area?
Him: Yes

Clearly, Creeptastic Man.

And then there’s the one who can’t figure out why he’s bored and lonely:

41-Year-Old Guy: Hi
Me: Hi
Him: I’m bored and lonely.
Me: Have you heard of MeetUp? They have events every day, lots to choose from.
Him: Where do you work?
Me: I don’t work, I am dealing with some major health issues.
Him: Can I come over? I’m bored and lonely.
Me: No, we don’t know each other so I wouldn’t be comfortable with that.
Two days later:
Him: Hi
Me: Hi
Him: Where do you work?
Me: I don’t work right now, I’m not well enough.
Him: Oh yeah. Can I come over?
Three days later:
Him: Hi
Me: Hi
Him: Where do you work?

<SIGH>

So here’s my take on OKCupid: The cupcake part of it is that it’s packaged to be very cute and friendly, like your very own serving of happiness topped with sugary frosting and sprinkles. The algorithm gives you the probability of being a match with someone according to your likes, dislikes and answers to hundreds of questions. I don’t think I’m alone when I see someone actually has a 90% or higher compatibility score with me and I get a little jolt of hope. The cesspool part is that all of these guys don’t know the difference between your and you’re (and I’m pretty sure yore would blow their minds), there’s money scammers, desperate men who are offering to relocate without actually meeting in person first, boys who want to talk about and show off their penises, and bulldozers who WILL MAKE YOU FIND RELIGION. I keep hearing about these fabled people who met their spouses online, but how did they get past the creepy, stinky cesspool??

I added another paragraph to my profile that states:
“If you are going to hit me up to chat, you’ll have more success if you talk about our common interests. If you just say “hello,” or you copy and paste a standard message that obviously is sent to everyone you contact, or you want to talk about your penis, I’m already not interested. No, really, put that away.”

And since I signed in for a few seconds to copy that paragraph, I got five new messages saying “Hi” – and that’s all.

<SIGH>

Send Up The Bat Signal

Posted on by akiwifreund

From Thursday morning until today at around noon, I was so excited. I felt this enormous surge of energy, and I wanted to do everything – go to the movies, go on job interviews, retrieve my car from where it’s being stored and drive around, go on real dates, go to Costco and buy 30 rolls of toilet paper. I felt like my old self. For 108 hours, I felt capable. I was sitting and standing and walking just like everyone else. The vertigo was still present but I wasn’t running into furniture or doorways.

The weather has been unseasonably warm, so I went on a few walks around my neighborhood for the first time since moving here. The last one this morning was to walk a few blocks to Redbox to rent a few movies. And just like that, the drooping face appeared again. As I was approaching my door, my steps became slower and slower, and all the while I was chanting to myself in my head, “No, no, please no.” I often have to try to explain the sensations to doctors and nurses who haven’t seen me before, and this is the best I have come up with: It feels like a big slab of raw steak has been laid across my forehead and left eye. The weight of it and the paralysis makes it impossible for my eyelids to stay open, and if you look closely, you’ll see my left eyebrow twitching because the nerves are misfiring or losing their connection completely when I try to move it. Everything becomes very blurry and starts swimming in front of me, kind of like what movie directors do to try to portray fainting from the viewpoint of a character. I lose depth perception and peripheral vision. I also become immediately exhausted.

I had seen my sister before I went on my walk and we were discussing the mystery of the symptoms lifting. After I got back, I had to send her a text saying, “Fuck it. Sell the car. It’s back.”

Today we talked about how this has been a really tough year. We lost our oldest sister, and then just a few days later my friend died, and now our uncle is running out of options to treat his stage IV throat cancer. My sister has health issues herself, and though she has told me numerous times that she is happy to help and that she knows this has been difficult for me too, I am fully aware that I am a burden to her. I don’t want this to be my permanent reality.

Some of my friends have gotten involved with getting in touch with people in the TV industry to see if there are news stations or shows that would be willing to feature my story. (I told one person that if I got on “Ellen,” I don’t want a car or cash, I want a doctor.) An uncle’s girlfriend is a freelance writer and we have been in contact with countless publications; I have been turned down by all of them because they want a happy ending. I am still hoping that I can get some exposure and a fire will be lit under someone qualified and knowledgeable enough to deal with this shit.

Oh, and Mr. Friday Night is done. When he was here, he asked me over and over again if he could return on Saturday for some more nookie. Late Friday afternoon, he texted me things like, “Miss me yet?” and “I’ll be back, I really like you.” I never asked him for another session, so this isn’t me baiting him to push him to say that he wants to see me again. Late Saturday afternoon I texted him asking if he was still planning on coming over, and his response was “:))))).” That was his last communication. So I sent him a text this afternoon telling him that he shouldn’t beg to come over and then act like I died – he needs to be more up front and honest with the next woman (Bye, Felipe!). It’s depressing that he got any of my good hours. Fear not, though – I have been chatting with others on OKCupid and initiating them into my weird and wacky world. One guy is 14 years younger and a great conversationalist but he’s so young. I may use a cane, but I’m not comfortable with being a cougar.

As disappointing as today was, I am happy about one thing: a ghost from the past contacted me through Twitter. I’ll call him Socrates, as he is a deep-thinking man. Socrates found me just by chance when he was searching for a former client’s info, and when I saw that he was following me, I sent him a message. I have actually been trying to look him up for the past few months. Socrates and I met when he was going through an especially difficult time; his business had folded, he was nearly penniless, his family was spiteful and sucking his soul dry, and he didn’t have access to healthcare.

I enjoyed his company despite the turmoil that burdened him and seeped into our time together. Socrates is incredibly intelligent. I could actually hold conversations with him that did not center around sports or the weather. He is much more concerned with the human condition and continuously trying to improve himself and the world around him. But the one thing that broke my heart, as it always does, is hearing that I am fine to have sex with but that person isn’t going to get into a relationship with me. And Socrates gave me that speech. I can’t help but take that personally, no matter if I also realize that it’s not the right time or the right person for me. Some day I’d like for some man to tell me that all of my parts are wonderful, not just the sex parts.

So we entered into a true friends with benefits arrangement. I helped Socrates to pack up his apartment so he could move. I found a sliding fee scale clinic so that he could try to get the healthcare he so desperately needed and wanted, just so he would know that there were options. I also gave him blowjobs he rated as, “Ohmygodthatwasthebesteverthatwasaten.” Socrates was always open and vocal with me, never just saying what he thought I wanted to hear, because he values authenticity over flattery.

Our last contact (and correct me if I’m wrong, because I know you’re reading this, S.) was over email in 2007. Socrates was overwhelmed with every part of his life and not interested in communicating with anyone for the foreseeable future. I was left to wonder if he was okay and how he was surviving because the messages simply stopped.

That brings me to today, and our renewed connection. I am relieved to know that he is in fact okay, and that he has done some serious work on his soul to try to repair some of the damage and to release the parts that are past rescuing. Socrates is also married! He and his wife seem to be true partners and supportive of each other, which is the best anyone can hope for in a loving relationship. Socrates is now in a position to help me with spreading the word about this crazy disease, and I am gratefully accepting.

The Weirdness Of You

Posted on by akiwifreund

Let your freak flag fly.

The hardest thing to do is to find someone who loves your weirdness.

This week I initiated another person into FetLife. My Friday date has a pantyhose and toe fetish and before coming over, he put in very specific requests for dark red toenail polish and nude pantyhose/stockings. I asked him if he had a profile on Fet. He had to look it up! I would not be surprised if he suddenly appeared. However, his fetish does not seem to be hardcore – he enjoys other acts as well, thank goodness. Main reason: I’m not a foot model. In fact, some have called my feet “Flintstone feet,” not exactly drool-worthy. All of this week I have been soaking, scrubbing and grinding away calluses because I was very aware that these toes could end up in his mouth – and they did.

As far as fetishes go, his is pretty harmless. However, I still had to accommodate him and find pantyhose and nail polish. I didn’t give him a list of anything that I required. But so far, he has won points with me because he isn’t telling me that I’m not doing “enough” to get better, or making me feel like a loser for not being able to work or really, just leave the apartment for more than 30 minutes. He also didn’t freak out when I told him that I had to wear wigs. That one is a big one! The real test will be to see if he sticks around and/or comes back again in the near future.

Something strange is happening with my body. I’ve been dealing with these crazy symptoms since my shunt failed on April 10th, but for the past three days without changing my medications, diet or supplements, I have been able to be upright for hours. HOURS. Like a normal person. I’m still having some issues with vertigo, but the pressure isn’t so strong on my brain that my face becomes paralyzed like it usually does when I’ve been upright for 30 minutes.

I honestly don’t know if the change is because it’s not terribly hot or cold. I don’t know if it’s because the humidity is relatively low for this part of the country at this time. I don’t know if it’s because the air pressure is at a certain level and is holding steady. I don’t have a clue.

But because I don’t feel like I’m dying, I suddenly have energy – at least, I’m back at fibromyalgia-style energy. I feel guilty for not getting in my car, which is currently being stored at my sister’s house and being prepared to be sold, to go to a concert, or the library, or the grocery store. I want to go out on dates like a real person! I have even thought about working because when I have this energy zinging through me, I hate to be idle. (Honestly, that’s what gets me into trouble. I either get really vocal on Facebook or I chat up a bunch of men on OKCupid.) But I don’t know why this is happening, and I don’t know how long it’s going to last.

My reminder of that is the notice I got from Metro Mobility letting me know I am eligible to use it until May of 2019. It’s a service set up through the bus system in the Minneapolis/St. Paul area for people with disabilities who can’t use regular buses. Normally I can only take the bus if my aunt rides with me and takes care of the fare as well as keeping an eye out for our stop because I can’t see well enough. I have to ride the short bus now. Don’t get me wrong, I’m grateful for this service. I just really like my independence and, you know, being able to see, and using this emphasizes just how handicapped I am and what I have had to give up.

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In another nod to normalcy, I just got a message on OKCupid from a guy who is seven years younger than me who claims to be “long and thick just for [me].” I did specify in my profile that I didn’t want to receive any penis pictures. At least he stuck to the rules and described it instead?? I replied and told him his DNA determined his length and girth, and has nothing to do with me.

It’s Raining Johns

Posted on by akiwifreund

This weekend I received two random friend requests on Facebook, both men claiming to be named John. One had no friends listed, his background pic was of an army unit crouching on the ground and his individual photo was of a guy who was about 26 with full sleeve tattoos. There is nothing listed like his hometown or location, only that he is divorced. The second was of a guy who looked middle aged and had about 8 “friends,” all women, and his cover showed him getting into the European driver’s side of a luxury car. Before I accepted their friend requests I did a reverse lookup of their photos to see if they were borrowed. No hits, so I accepted, which is pretty out of character for me. Wouldn’t you know it – they both hit me up within 20 minutes of each other to introduce themselves 24 hours after I accepted their requests.

John #1 (Army): where are you from..
Me: I’m from Minnesota. My page contains a ton of info, but yours has none.
J1: who told you that my is none
wow nice to meet you, I am from Austin,Texas and I am currently stationed now in Afghanistan for peace keeping we need you prayers..
Me (cringing at the prayers reference): I have a friend in Austin. Are you Army, or Marines?
J1: Are you married and you have any kids? and what are you doing for a living……and how old are you
Me: I am not married and don’t have kids, it wasn’t my destiny this life. I’m 41.
J1: i am single divorce my ex cheated on me and i have 1 grown kid and one adopted son…….i am 42 now
Oh I see, would you like to get remarried again…?
Me: I’ve never been married.
J1: i have been in afghanistan fro 14years now
oh Okay, would you like to be in love again..?i am looking fro the right women to get in love with again ….how about you …how about you
Me: Well, the love question is a tough one. I am not sure how this brain disease is going to play out, and because it’s so rare, the doctors don’t know either.
J1: why don’t you want to be remarried again or be in love with someone again
Me: Quite frankly, I don’t know if I will ever be well enough to date again.
J1: that will never be true
Me: You are optimistic? I have had 10 surgeries in 4 years, the doctors have decided to stop operating on me for now.
J1: why dont he operating on you

Okay, at this point I’m thinking there’s a little Google Translate going on!

Me: Because all of the operations have failed to fix the problem. So are you using your Facebook page strictly to find romance?
J1: no i don’t use it
(Except for now??)
J1: i am looking fro the right women to get in love with again ….how about you …
Me: I’m not into women.
J1: why not?
Me:  I’m just not. I see tatts on your profile pic. Where have you been getting them done?
J1: there is no tatts on my profil pic

(I can see that the guy in the picture has tattoos from his shoulders all the way down to his wrists, full sleeves)
Me: I am on a laptop and can see pictures on a larger scale, it looks like you have full sleeve tatts. Is that not correct?
J1: there is not some thing like what you are saying to me
Me: I can see the top of the bicep in the picture.
J1: dont make me to be came angree with you
Me: So you don’t have tattoos?
J1: yes i have but first i did not know what you were saying..What are you looking to meet on here..?
Me: I’m not looking to meet anyone on Facebook. I’m also not doing internet dating.
J1: why
Me: I’m not well enough to date right now.
J1: why dont you want to be in love with me or any one
Me: I have to concentrate on my health right now.
J1: i no thta you have to concentrate no your health now but you can be in love wells concentrate no your health
Do you have Yahoo Messenger Id were we can get to know more about each other..?
Me: I’m sorry, I don’t use Yahoo messenger. I can’t put any energy into dating right now.
J1: Oh Okay, can you go to http://messenger.yahoo.com/ and download it now..?
I was hoping that it was lights out soon for him, since it was about midnight his time when he messaged me…if in fact he was where he said he was.
Then John #2 hit me up:
J2: Hello C____ . you have a good and nice name , i really like you so much to be your and i will like to be friend, Have interest i knowing more about you, am a nice good and honest person 49 years of age . hope to hear from you soon .
Me; Hello John, where are you from?
J2: Am from Brazil but i live in Californian
Me: I noticed you were getting in on the European side of the car in your cover photo.
J2: I took the photo when i was in England , do you like the photo
Me: It’s a great action photo.
J2: Lol … you look pretty

How old are you if i may ask ?
Me: Thanks. I’m not on Facebook to date or make hookups though, just be warned.
J2: Why do you say that ?
Me: Well, I usually don’t accept friend requests from people I don’t know because I post somewhat personal stuff.
J2: But why do you accept me , don’t you like me ?
Me: I am always open to making new friends, but there are some things I post on Facebook that people who don’t know me wouldn’t understand.
J2: I understand that so very well, i don’t get into people stuffs i just like the person you are and i am looking for friendship that’s the reason why i send the request
(Yeah, right!)
J2: Am 49 years of age  How do you see me ? But right now am in Africa for work
(Ah ha – there it is!!)
Me: What are you working on there?
J2: I work as an Contractor and right now u got a work of roads so am making it and directing am also the Supervisor.
what do you do for a living ?
Me: I am not well enough to work now. I’m not sure if I will be able to work again. I have had 10 brain surgeries.
J2: Ohh so sorry to hear that what has gone wrong with your brain ?
Me: It is a rare disease – so rare that I might be the only one with it – and none of the doctors know what it is or what to call it. They have tried 10 operations and have decided for now to stop operating.
J2: How did it go on with you ? Qhat are the observation, i think you are on good track right now and i don’t think there is something wrong with you but i may not understand please explain
Me: You mean, how did I become sick?
When I am upright, the fluid in my brain presses on the nerves that lead to my face and also puts pressure on my brain stem. My face becomes paralyzed and I can’t see, and it also makes me very dizzy and unable to walk.
J2: and how do you get along ? does that have any problem with the way you talk or send message ?
Me: I can’t drive or walk great distances. When I lay down, the fluid moves away from the nerves that it presses on, so I can see nearly perfectly again. So in order to do anything, I have to be laying down flat.
J2: i can send you some african herbs and will heal you but it’s cost
Me: lol – no thank you, no herbs necessary.
J2: You don’t believe in herbs ?
Me: That would be like throwing parsley down your clogged drain.
After that, crickets.
This just reminds me of a Family Guy episode that a friend sent me a long time ago – it has to do with a guy insisting that a few minutes with his penis would cure a woman of all of her problems. I am convinced that is the universal belief around the world.

Hey, Peter Pan, I’m Going Home Now

Posted on by akiwifreund

An article was posted in a local paper about a woman, an attorney for a meat packaging plant, who was trying to adopt a teenage girl out of the foster system and provide her with a stable home and a brighter future. She had never met the girl but rather read about her, and something in her was motivated to change her life completely to give this girl something she had never had before. The woman went through parenting classes for a year in order to learn how best to help this girl who had suffered neglect and abuse. The article bemoaned the fact that though this woman had jumped through all of these hoops, the state was dragging its feet on placing the teenager with her simply because of bureaucracy and red tape.

I shouldn’t read the comments section of ANYTHING published ANYWHERE, I know. But I did, and it was just as frustrating as I expected. Instead of the commenters being outraged about this teenaged girl’s case not being accelerated to be adopted by this woman who obviously wanted to give her stability, structure and love, the majority of the commenters left nasty statements about this woman’s hair and weight. This woman, an attorney, had a bright turquoise streak of hair at the front of her otherwise “normal” brown hair, and she was overweight. I did not receive any intelligent replies to questions that I asked that were to the tune of, “What does her appearance have to do with her being able to provide a loving home to this child?” Some people told me that I was stupid if I couldn’t see it, others said she obviously lacked self control. One young woman remarked that the turquoise in her hair shouldn’t be allowed in someone her age. I have to say that that really got to me.

The first and obvious problem I have with all of these trolls is that this woman is clearly intelligent – her company is obviously not bothered to be represented by legal counsel who happens to have an unusual color in her hair – and financially stable, and strongly committed to giving this girl the best possible start to her young adult life after being mistreated and neglected for so many years. Second, why is she “too old” for something fun like putting a turquoise streak in her hair?

Over and over I’ve seen advice columns about what not to wear over ages 30/40/50. (One of the funniest items was advice not to wear “suntan” pantyhose, because no one is going to believe you have a suntan after 40.) There are some things I agree with, like it’s weird to see an middle-aged woman trounce around in sweatpants with “PINK” written on the ass. Then there’s the whole class of women who think their only value in this life is to compete with their daughters (and even their granddaughters) for the attention of men, so they dress in tank tops and short shorts that would normally show up on a 14-year-old. But a turquoise streak? Maybe it’s because my father was a hair stylist, or maybe it’s because I have always been a little rebellious, but I think the day I swear off experimenting with color in my life is the day I die. I haven’t worked up the balls to get a blue wig, but I’m getting there. And I’m 41.

So this leads me to the next question:  At what age or event did you feel as if you were truly a grownup? I posed the same question on my Facebook page and received interesting answers. Of course there were a bunch of men who declared that they still hadn’t grown up, all over the age of 40. One man said it was the day his eldest daughter was born. One woman said that her wedding day made her feel like an adult; another said it was when she gleefully anticipated canning, making bread from scratch and putting out a big spread for the holidays. One woman said, “34, maybe?” Obviously this is a small sampling, and is by no means scientific, but I think it enforces the concept that you are only as old as you feel mentally. And this attorney with the brightly colored streak in her hair obviously was not giving in to old age and mediocrity just yet.

For me, I felt like an adult at 16, because it was my first year living away from home. From that point on, I threw myself head first into the world, paying bills (on time!) and finding new places to live around the country without seeing them in person first. Creating a circle of truly close friends is a totally different playing field when you aren’t in school anymore.

Lastly, I am pondering this because I think it demonstrates the challenges of dating. I, as a 41-year-old woman who hasn’t lived at home since I was 16, have felt like an adult for that amount of time. I might want blue hair, but I think that’s a shout-out to my artistic tendencies, not my level of maturity. None of the women claimed that they still hadn’t “grown up” and the majority of the men said they were never going to “grow up.” So whose job is it to change in order to make a relationship work and endure?

(Title by Patty Griffin, first line to her song “Peter Pan”)

Would You Like Some Mayo With That?

Posted on by akiwifreund

Today I made a trip out to a new neurologist with my mom’s friend as the getaway driver. He was recommended to me by my sister’s employee because he was a great help to her family member, who was also suffering from some mysterious neurological issues (but after only 10 minutes he figured it all out). I went in with my usual folder of about 100 pages of documentation. After chatting with him for about 45 minutes and getting a brief neuro evaluation, he determined I should go to the Mayo to be seen by numerous doctors so they could try to get to the bottom of it. Those were the magic words I was waiting for. I already have my hotel picked out down there! I found out after I booked the appointment that this particular neurologist was trained at the Mayo and he still has an “in,” so they can’t turn down his referral. So I stumped another doctor but it was not a pointless visit – I am finally getting my foot in the door.

I am relieved that this particular fight to be seen by some of the world’s leading experts on issues with CSF is finally over, but I’m already looking ahead – and I know that this is the last stop for me. If they can’t figure it out, there’s no where else for me to go. Also, maybe this time someone will write me up in JAMA and put their name on this condition. I’m tired of having to explain why I have placeholders for the disease names.