nevermarried

Caught Between a Rock and a Short Bus

Posted on by akiwifreund

The problem with losing every hair on your body, or very nearly (because my big toes are always the last to shed), is that you have to find a way to define your facial features but still blend in with the rest of civilization. My eyebrow tattoos were last touched up almost two years ago and were fading and turning a pinkish hue of tan, prompting me to color over them with a combination of pencil and powder. This is not a durable solution, though. I still have really oily skin like a teenager and usually within an hour, if I go to push my wig bangs out of my eyes, I end up schmearing my eyebrows in the process, so I look like a crazed devil.

It took me a while to find a permanent makeup artist in the St. Paul/Minneapolis area – first because there don’t seem to be many at all, which I blame on everyone being a tree hugger and shouting from the rooftops how “natural” they are; second, because I don’t want to get just anyone to ink my face. I finally found someone who seemed to use the methods that I was familiar with to give me the most natural-looking brows possible, who also has a decade of experience under her belt.

The ride out there via Metro Mobility (http://www.metrotransit.org/metro-mobility if you’re curious) was pretty uneventful despite the dispatch center’s computers being down – everyone just made do. My driver was on time and there was only one other lady on the bus. The ride back, however, was a little more interesting.

The woman who was our driver for the trip back was very, very nice and good-natured. Unfortunately, I realized that she was used to a certain clientele because she was talking to me as if I was deaf instead of mostly blind. She was shouting, actually, and using small words. I was only the second rider on and she had to pick up four more people before she could start dropping us off. For most of the ride I was the only female on the bus. My trip lasted almost two hours.

By the time it was my turn to get dropped off, I was mostly blind. The last passenger we picked up was an elderly lady who seemed pleasant enough when she boarded, but when the driver went to escort her to her seat and strap her in, the woman refused to sit down. I could immediately feel the tension ripple through all of us. We had been on for quite a while, someone in the group wasn’t really big on bathing and we were in that odd space of being too hot or too cold on a winter day trapped in our layers of clothes and dependent upon the driver to run the bus’s heater. We were all individually and collectively ready to pounce on the woman if she didn’t cooperate. Luckily we didn’t have to, the driver distracted her by saying she was carrying a lovely bag; the woman was still confused by the seat belt the driver was hooking up for her (“What in the world are you doing??”). So when the driver was required to escort me to my front door, she just kinda did an “Okayareyougood?Ineedtogoincaseshedecidestoescape.”

I discovered that while I was out getting my eyebrows put back on my face that the financial coordinator from Johns Hopkins had called to tell me that medical assistance didn’t have any record of my request to be seen at JH. Since I had had four separate conversations with the company in charge of my Medicaid and they had actually called the PCP who was supposed to submit the request, I knew that was not correct. I spent another hour on the phone trying to find out who had ignored the notes and faxes on my file that I had sent in myself; I had to leave another message for the financial coordinator to ask her to try again. I really don’t want to piss her off because she is the first person I’ll deal with at Johns Hopkins, so what she does or doesn’t do is going to greatly influence my time there.

The eyebrows, the special request for medical assistance, the stuff that fills my days now instead of a job and trying to plan my next social event, is not anything that normal people can relate to. How can I explain it? I can’t even summarize it all in a sentence or two.

I also had messages waiting for me from two men – one from OKCupid, and one from Match. They are actually both ten years younger than me and seem to be very physically active. I’ve traded messages with them before so I have a somewhat superficial handle on their personalities. I instantly developed anxiety when I saw their messages. One made it very clear to me that he is a fair weather friend; I told him that I thought he would be a fun person to know, but he would become bored with me because I can’t go out and do things like he does. He responded by saying that I should contact him when I’m “better.” Well, there were only about two weeks between his last message and today’s, so this just proves to me that he thinks I’ve got the equivalent of a cold. The other one suggested meeting up in our last exchange. I told him that it had to be in my neighborhood and within walking distance for me, and then he didn’t respond for a little over a week. Today he indicated I should call/text so we can meet up. Does that mean he’s okay with my circumstances, or that he’s hoping that it’s not as bad as I am saying? I’m trying not to let my self-doubt rule, but now I’m fighting the urge to crawl under my blankets and overdose on emo music.

How do I explain having to use the short bus? And dammit, now I have to wait another week to even try to go on a fly-by date with the second guy because my tattoos need time to heal. Right now they look like two greasy, dark, flat caterpillars have been smashed on my forehead because I have to keep them moist with ointment. If I keep throwing these obstacles at him, am I driving away a good date?

Tonight’s music selection reminds me of Heath Ledger every time I hear it (a la 10 “Things I Hate About You”). It makes me sad because I remember thinking that when I saw him in it, I was convinced he was very quickly going to become a star and would be easily recognized – and he did.

https://youtu.be/R1j1RRWcYSg

 

It’s That Time Again

Posted on by akiwifreund

I’m not talking about Daylight Savings Time (I really think that should be done away with). I’m not talking about burning a yule log and sipping a hot toddy. I’m talking about putting on the most ridiculous paper “gown” and having my girl parts checked.

Five years ago this month I made the best decision I ever could have made and that was to push for a hysterectomy. I had had many, many problems since the age of 19, including some fast-growing fibroids that had taken over my uterus and prompted a quickie biopsy (without any anesthesia or numbing). I remember the doctor coaching me through the pain of that biopsy and at one point saying, “You’re doing good, we’re halfway done.” And like Satan’s wife, a deep, hideous voice came out of my mouth that said, “Only HALFWAY??” By the end of 2010, if I was lucky I had a whole week off every month from bleeding, rather than the reverse being true. So at age 36, I kissed my uterus goodbye – or rather, I gave it a good shove and told it to kiss my ass.

Thank goodness I don’t have to worry about birth control or how to control a flow. But I still worry about diseases, so I requested a full workup from my doctor – peeing in a cup, scraping the “pouch” that was left behind where the cervix used to be, and a couple of vials of blood took care of all of the testing. The person I saw today was new to me, so it was kind of odd that I had to convince her to check me for everything, as if she was thinking I was too old, too disabled or too nice to have had multiple partners – or all of the above. What I didn’t say was, “Yes, I’m still sexually active even though I look like Quasimodo right now. You’d be surprised what guys will overlook with the promise of getting a piece of ass.” A couple of times she paused as if she was waiting for a number. I finally said, “Look, I’ve never been married, and I’ve been single a lot, so yeah, test for everything.” I don’t like to leave anything to chance.

Then we had a conversation about the hair “down there.” She wants all ladies to go back to the ’80’s, when porn didn’t dictate the majority of women under a certain age shaving. She was singing the praises of how the hair kept pollutants out when women weren’t punishing themselves for being adults rather than little girls. I reminded her that I really didn’t grow hair ANYWHERE, and she said that she didn’t want me to get rid of anything – that I should try to keep whatever I could get. I snicker now because the next logical progression if I made that choice would be explaining crop circles in my kitty hair when I’m naked with my next partner. Alopecia makes hair fall out in perfectly round circles; when you have universalis, most or all of the circles have melded into one universal loss of hair everywhere, but I sometimes have some patches. If you have ever thought to yourself, “That dude should just give up trying to grow a beard because it ain’t happening,” that would apply to my situation too.

Today I remembered a doctor’s visit a few months ago when I was waiting in line to check out. There was a kid in his early 20’s who didn’t have much experience with going to the doctor or the intricacies of dealing with insurance. He was bounced back and forth between the front desk and the back one because he really just wanted an appointment for STD testing, but it wasn’t included in his “free” yearly exam as he had hoped; he finally left the office without getting anything done. I could tell he was worried about paying his co-pay and co-insurance. I wanted to step up and offer to pay for it, but I would have violated what little privacy he tried to keep – I didn’t want him to know I heard everything, but I also didn’t want him to walk away without getting tested. In the end I had to let him go. I sure hope he was able to take care of it sooner rather than later.

Today is World AIDS Day. The prognosis has changed greatly since the early ’80s thanks to advancements in medicine, but I’m more than happy to get tested regularly so I don’t end up being part of that demographic. I’ve got enough going on as is.

Duck – Here Comes Another Turkey!

Posted on by akiwifreund

The Quiz Master (previously referred to in “What’s Going On With Your Face?” post) messaged me today and wished me a happy Thanksgiving. It was not his first message to me since he signed off with a “goodbye and good day” after I told him to stop contacting me. Oh, no. I knew he couldn’t be counted on to leave me alone, considering how obsessive he is. The Quiz Master also texted me on November 15th and said, “Hey, how are you?” as if I hadn’t cut him off. As if I would come to my senses and say, “Oh, you’re the best Quiz Master ever, I don’t know what I was thinking in telling you to go away.” He, of course, told me that I was pushing him away just because I am stubborn – not because I actually want him to leave me alone. “No” doesn’t actually mean “no” and all that bullshit, according to him.

I also got a cutesy cartoon from the church guy who went radio silent in “Showing Up is Half the Battle.” This was after he sent me messages saying “happy turkey eve beautiful” yesterday, and before that a message saying his aces were up while playing poker and that he wished I was by his side as he was winning.

Don’t worry, I didn’t reply to either of these jackasses. And in perfect harmony with this post, “A Little Respect” by Erasure played on my Pandora while I was typing.

On a different note, I traded emails with one of my mom’s sisters and updated her on what was happening with my situation. She said she had contacted my cousin, who is a doctor of osteopathy (DO), and he said that the doctors are turning me down not because I’m giving them too much or too little info, but because they can’t “win” with me – there is no way they can diagnose me. As it stands right now, there are approximately 7,000 diseases out there in the world that have no name or etiology, and the majority of them are similar to mine only in that the symptoms are neuorological in nature. I have been in contact with some groups that I think should be able to put me in touch with the proper researchers, and there are rare disease groups that focus on finding resources for patients. However, I’m feeling a bit like I’m drowning again. A lot of these groups talk specifically about patients that are children. I know it’s especially troubling when children are stricken with major illnesses; after all, I was sick for most of my childhood. However, now that I’ve managed to become a middle-aged adult while this particular disease popped up, does that mean that my life is worth less? I had my chance to reach adulthood so am I therefore not worthy of assistance?

Every person I talk to tells me not to give up. I am not sure I can anyway. I mean, I had to give up my house, my car and working – what else am I going to do with my time? But at some point I need doctors and researchers to fill in the blanks. I can’t imagine going another 10 years like this and waiting for technology to catch up.

Today was the first time in about 23 years that my sister, my mom and stepdad and I were actually in the same state for a holiday, so we pigged out at my sister’s place. Yesterday and today were pretty difficult for me and I think it has to do with the temperature, air pressure and humidity; we got snowfall that actually accumulated and stayed today. I had to spend most of the time in bed because of fibromyalgia pain, but also my CSF was accumulating like the snow. I was hoping I’d be able to hang out for a few hours before my brain started being crushed, but instead I began drooping noticeably as soon as my stepdad picked me up, and I had only been upright for about 45 minutes at that point.

Wherever you are in the world, I hope that you can find things to be thankful for every day. I’m working on my list.

 

Showing Up is Half the Battle

Posted on by akiwifreund

Update: This morning, November 23rd, he sent me a text message saying that he was sorry because he fell asleep, and then he went to church and turned off his phone. He offered to show me the logs “where it proved he was in church.” I told him that all he had to do was text or call and tell me it wasn’t going to work out, not wait two days, and that it was time to live an authentic life and stop making excuses. Seriously, I am so done raising men.

_____________________________________________________

Yesterday was a good day for me, health-wise. I had vertigo and fatigue but not a facial droop. I thought I was undeniably lucky – because a friend from the past had offered to pick me up and take me out to karaoke, and rather than having my face paralyze by the time we arrived, there was a good chance that I would be able to be upright for a few hours.

He and I had talked about my limitations and what to expect to happen, which is to plan for the worst and hope for the best. All week he was telling me how excited he was to see me after all of this time. Then he started talking about how it has been a long time (in the neighborhood of 15 months) since he had dated, or been close to someone physically. Because we are so different on the religious front, I warned him that we wouldn’t be a good match because church is such a big portion of his life and I am 1,000% a non-believer.

I texted him Saturday afternoon to find out what time he was picking me up so I could plan accordingly. He told me that he would be by at 6 pm. Then he started texting that he was nervous about his teeth – he knows that I like it when men take care of their choppers. (I didn’t tell him that it’s because I had had boyfriends who had let their teeth rot and it was horrible kissing them.) I told him I knew it was expensive to get them fixed and that I was aware that he was making an effort, I just didn’t want him to have to get dentures in a few years at such a young age. I also told him that I had my own insecurities, but we should both try to work through them and enjoy our time out and catching up.

At 6 pm, he didn’t show – but he sent a text saying it had been a hell of a day and his roommates were fighting. At 7:30 he was still a no-show, so I texted him to ask if he was still on his way over or if we needed to figure out a different day.

Crickets. Nothing. Absolutely nothing, not even this morning.

There weren’t any stabbings or shootings in his area. I know this because I checked. With this in mind, there is no great mystery surrounding why he is still single. He has my cell phone number, my email and for Pete’s sake, my street address. I’m really struggling to find a place in my heart that will allow him the benefit of the doubt if he does come back to me, sniveling about something or other happening that prevented him from telling me what the deal was. It’s the kind of behavior that I would expect from a stranger but not at all what I want in a friend.

And if I sometimes sound bitter or disillusioned through the course of all of these blog posts, it’s because I am. Nearly every man in my life has let me down, with rare some exceptions. But rather than allowing this particular night of waiting needlessly to get my blood pressure up, I’m calm, as if he has never existed in the first place. As the daughter of an alcoholic, disassociation comes easily to me. But men should know that every time they do something like this, they break women’s hearts, even if it’s just a tiny bit; it all adds up.

While writing these few paragraphs, one of my favorite Anberlin songs came up on my streaming music. I’m sad they broke up in 2014 because I’ll never have the chance to see them live, but thank goodness for the permanency of YouTube.

The Dog Days of Dating

Posted on by akiwifreund

I’ve got two accounts going, one on OKCupid and one on Match. After making one acquaintance and laughing about my crazy exchanges, it really drove home the fact that I am likely expecting too much from one and too little from the other (Match is supposedly where the more serious people go to look for love). So I changed the first line of my OKCupid profile to say, “I’m not looking for a hookup.” I also removed some items and added some more to dumb it down. For instance, my introductory paragraph has bullet points and includes, “I’m a feminist. This includes the concept that no means no” and “I don’t believe in organized religion.” Further down for the section that starts with, “I spend a lot of time thinking about” I finished it with “equality, healthcare, social justice, cats and dogs and why I can’t have them, and how much I want pizza.” Lastly, in the section that begins with, “You should message me if” I entered “- You are a non-smoker (of all things); – You really are single, not looking for a third in your threesome or looking for someone “discreet” so you can cheat on your wife. C’mon, it’s NOT complicated – you just wanna catch you some strange, let’s call it what it is; – We live in the same country. Please, no penis pictures. Seriously.”

So the first message I get after my revisions is from a guy with one photo where he looks like a total mouth breather, 34:
Him: How are you doing today? I would love to talk with you more. You are very beautiful by the way 🙂
Me: Hi, thanks. What would you like to chat about? What style of literature do you normally read?
Him: I read all sorts of books. What are you doing today?
Me: Today is laundry. If you are going to say “Let’s do something,” I have to warn you – I can only be upright for about 30 minutes, tops. We could probably do a high five on the sidewalk. 🙂
Him: Why only upright for 30 min?
Me: Super rare brain disease.
Him: Well we could have fun lying down? Lol
Me: Nope, not looking for a hookup. That was just a line about wanting to chat, huh?
Him: Why no sex
Me: Am I just here on this earth to fulfill every man’s fantasy and whim? No. You want to stick your dick in me without treating me like a fellow human being with value. I’m not interested. After that he blocked me. I am just going to assume it’s because he’s trying to stop himself from making the same stupid mistake again because he won’t remember soliciting me for exactly the same thing I specifically said I didn’t want.

Man, 50, lives 80 miles away:
Him: you want to take me out to lunch your treat
Me: Aerosmith, “Dream On.” It’s my song gift to you.
I blocked him. I didn’t have the energy to educate him on how to score.

Man, 39, local:
Him: Wow…..you are absolutely gorgeouz!! I wish I was your type.
Me: Thanks. So why aren’t you my type? Would you be mean to me, or try to send me inappropriate pictures? Or rub your cats in my face and send me into anaphylactic shock? (He has a couple.)
Him: None of the above…I’d actually treat u like a queen….but I’m sure my cats would cause an issue……hence..not ur type??
Me: Yeah – I looooove cats (and dogs), but have to take four meds and only hang out for two hours, tops. Maybe in my next life I can have pets. 😦 So best wishes to you in your search!
Him: Well….I could always,come over…undress and.hang out. No cat then. 🙂
Me: Would it surprise you to know that’s not the first time I’ve heard that offer?
Him: No….but I’m sure I’m not gonna be the first you say yes to though…
Me: Well, that got weird.
Him: Lol….how so?
Me: It’s never fun to be on the receiving end of implied sluttery.
Him: Oh…no…I was implying the opposite my dear. That you have yet to accept an offer…
Although I’d dig being the first….
After 8 hours:
Guess not
I didn’t bother responding. How would you respond if he acted the exact same way he claimed he wasn’t acting? It boggles the mind.

Kid, 26, 80 miles away:
Him: Hi you’re sexy
(I’m marginally impressed that he knows the proper usage of “you’re” but not enough to reply)

Man, 48, local:
Him (obvious copy and paste without reading anything about me): I am a single father, a bit shy at first. New to the dating scene. I actually look forward to just meeting and getting to know someone, I want that someone to enjoy my company as much as I enjoy theirs. I do not like to play games, I like honest and sincere people Have a blessed Day…
Me: Hi, honesty and sincerity are great. Is your work winding down for the winter, or do you stay busy with projects?
Him: am off work for Now … How Are you doing ? would you like to txt me .. i don’t get don’t the site that much ….. what’s your name Beautiful
Me (cringing at being called “Beautiful” – not at all sincere – and the “blessed day” already rubbed me wrong): I’ve had a few stalkers, not comfortable with immediately giving out my cell.
Him: I understand How you feel … i can see you real an honest and open minded woman … and that what i want in my woman … what do you like doing sweet woman
With only 45% of our answers being marginally close and 70% flat-out enemies, I am going to let him pass me by.

Then I got a message from a man, 30, and in the U.K., and I immediately went on high alert:
Him: hello how are you today?
Me: I’m okay, how are you?
Him: im doing well thank you
just back home from work
i ve had a long day
Me: Ah, you’re working late!
Him: a little bit but have u seen that im living in england and im just having a trip soon to MN and lookining for friends and maybe more….
Me (really, really frustrated at this point): Ah. I’m not open to a hookup or a long distance romance. I’ve got a lot going on with my health right now.
Him: what are u looking for in here ?
Me: I’m looking for a long term relationship. What about you?
Him: im same really just its not easy o meet the right one
After this, I decided to put away my baseball bat before I smashed my computer to bits and give him a chance. We actually had decent conversation and it seems like he is sincere, but obviously I don’t know him at all, so I’m still on guard.

Man, 38, Philadelphia:
Him: hi how r u
Me: I’m fine.
Him: Don’t let the distance fool u I get to fly for free
Me: So, whose photo are you using for this site?
Crickets. I did a reverse Google image search and found that he had downloaded some photos from a bodybuilder’s site who was in the UK competing at the same time we were chatting.

Lastly, I got a message from someone that I knew 24 years ago. My gut reaction was to say “CRAP!!!!” because I’ve never lived in a city long enough to have my past come back to me like that. Now that I’m back in my old stomping grounds, I have to reconcile concepts like my family being fully aware of my dating life, and for previously-known people to find me again. I asked this guy about what his experience has been on OKCupid, and he said he’s had bad luck. I commiserated with him and told him that a lot of guys were just approaching me for sex, and he said he was getting the same thing from the ladies. (Really???? Man, I have a hard time believing that. I mean there’s always going to be the ones who have been married for 20 years and want some action, but I don’t think that’s all of us. Maybe I’m naiive.) He told me that not all men were just looking for sex. I then reminded him that he messaged me out of the blue about 2 years ago on Facebook to tell me that he was horny after we hadn’t talked for 20 years. His reaction was, “Oh, sorry about that – I must have been a little drunk.”

The quest continues!

 

 

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.

Dating Whitecoats

Posted on by akiwifreund

Trying to find a doctor is a lot like dating. I’ve gone on a hell of a lot blind dates, and I’ve gone to a hell of a lot of doctors. I no longer get butterflies for either. I no longer have a feeling before I meet them of, “Maybe this will be the one.” Nearly all of them have broken my heart.

This week started off with a trip to a new rheumatologist. He was recommended to me by a friend whose mom had seen him, and he managed to treat her for much longer that she would have survived in the hands of another doctor before she succumbed to scleroderma. I read up on him and checked out reviews, and it seemed like he would be interested in solving mysteries. He was a tall, older gentleman with silver hair and a stern face, all business. After we began talking and I produced document after document for him, he began to get quieter, except for repeatedly shaking his head and sighing. I answered all of his questions from memory including lab results. Then he started stuttering. “What – what – what about your MRIs?” I told him the problem was that I had to lay down for them, and the fluid drains off almost immediately, so I don’t feel that they are getting a true picture of what’s happening when I’m upright. Then he started the, “Gosh, I Don’t Know” song.

He finally dropped his pen, turned to me and put his hands on his knees and said, “Has anyone seen anything like this before?” I told him no, and that I had seen a lot of doctors. (My count is 40 to date, including all of the ER doctors that have examined me.) He said it was obvious. Then he asked if I had tried the Mayo. I told him I had been turned down five times including the most recent try on October 2nd. He said, “What in the hell is wrong with them? They’re supposed to be number one in the nation for rare stuff like this.” I told him that I was going to try other avenues, including Johns Hopkins and going to the media to try to get my story out there with the hope that someone would be willing to take my case.

We went through the obligatory motions of the rest of the exam, where I put on a gown and he prodded my joints. I laid down for part of it and he watched my eyes open, and when I sat back up he saw the effects of the CSF pooling and forcing my eyes to droop shut again. I asked him if I could continue coming to his office, even if I saw another doctor, so that I could at least get care for my fibromyalgia because I didn’t especially care for the rheumatologist I had originally seen. He didn’t say anything.

When I got dressed again, he came back in and said, “I don’t have any answers for you. Try Johns Hopkins and see if they will take you on as a charity case since you have no income and medical assistance will only cover the state of Minnesota. I can’t help you.” He wasn’t unkind and I have heard that response many, many times. As I shuffled nearly blind down the hallway, I kept thinking, “This was just another waste of time. Waste of time. Waste. Waste. Waste.” I have gotten better about not crying after every unsuccessful attempt.

So, what’s next? Well, I’ve got to find a rheumatologist who will at least treat the fibromyalgia and not be a jerk. And I have to try to get my stories on local news stations and national talk shows. Everyone keeps saying, “Ellen! Try Ellen! She’s the best!” And I agree that that’s true and her show gives me lots of laughs and smiles, but I’m not sure she is even interested in taking me on, because I don’t have a happy ending. I have sent in a few submissions already. Thanks to the help of my former flame, I’m learning to navigate Twitter and have been trying to get the attention of neurosurgeons and neurologists around the U.S. I have also been tagging the Mayo in tweets about how they determined I’m “too rare” to examine and would anyone else like to take a shot? I’ve started following neurosurgeons and TV stations. I’ve tweeted Johns Hopkins repeatedly. They have a remote referral option that I have to pay for out of pocket, but honestly, I want them to be interested in my case, not just look at me as another number and dismiss me.

I’ve also started following groups that support rare diseases, either with research, treatment or resources. I managed to catch the attention of two of them and they will be publishing my submissions within the next few weeks.

After the unsuccessful visit with the rhuematologist, I sent a message to the neurosurgeon in St. Paul who told me, “Don’t give up. I know it’s been a long time and someone will be able to help you,” asking him if he could refer me to the University of Minnesota to see if I could be studied there. I was told that my case would be sent to the complex specialty care unit; yesterday I received a call and they stated that they wanted to get me in on Monday. I was surprised because I’ve never been able to get in with a specialist without having to wait 2-3 months, but of course I said yes. So I have another “date” Monday.

I also had to talk to my case worker for my disability appeal. I told her that she wasn’t going to see anything new from the rheumatologist, and that I was trying to get into the U of MN in the neurology/neurosurgery unit so I could be studied. She has been super nice to me, but it’s still her job to turn me down for disability. I know I’m going to get another call from Maryland telling me that my case is being rejected again because I don’t have a diagnosis – but it sure as hell isn’t for lack of trying. I’m trying! Seriously, slip into my body for a few weeks, or even a few hours, and you’d cry for your mommy and then tell me to take all my disability pay plus a little extra for having such a hard-ass time.

Finally, I’d like to say in closing: Screw you, Mayo Clinic. I realize that I’m not a wealthy billionaire and I’m not the Dali Lama, but you should take my case and figure out what in the hell is going on. As far as I’m concerned, you reputation for being the best for neurology/neurosurgery is completely undeserved. You just made my life 1,000 times harder. You were my worst no-show.

Put Some Warrior In You

Posted on by akiwifreund

Whenever you are feeling a little down, do a little haka in your living room. Guaranteed to make you feel invincible.

(Bring your neighbors cookies afterwards to apologize.)

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.