#St. Paul

Not Sick Enough?

Posted on by akiwifreund

September often signals everyone buckling down to business again in Minnesota because summer vacations have wrapped up and everyone is back to school. My mailbox has been stuffed every day with paperwork too – mostly having to do with filing for medical assistance and getting all of my records sent to me by various facilities. I’m not even trying to get housing or food assistance. I braced myself for a challenging week.

It started out nice enough. My uncle helped me to connect with a stylist who has a lot of experience cutting wigs (both synthetic and human hair), so I finally got some really pretty pieces to go incognito when I feel up to it. Monday night to Tuesday afternoon a friend visited from another state, so you know I had to scrub my toilet for that. Today I was supposed to be wheeled around the state fair, but that outing was canceled due to rain. It’s probably good that I stayed home anyway.

My first call of the morning was from the Maryland office for Social Security benefits, notifying me that my request for disability was rejected. I know, I know, 80% of cases are rejected the first time, and I’ve been telling friends the same thing when they have asked about filing. I still wasn’t prepared to hear it about my case. I used to never cry, but now that I get anxiety because my brain is being crushed, I cry over everything – the Sarah McLachlan ASPCA commercials, the dogs greeting their vets coming home from war, the fact that I have to get another new mattress after only 4 months because I’ve worn this one out already…well, you get the idea. The lady who called me was not unsympathetic and probably gets upset people on the phone all of the time, but I’m guessing it’s not how she wanted to start her day either. She told me to file the request for reconsideration within 60 days of the date of the letter being sent to me and that the next person might view my 300+ pages of documentation differently. I was so choked up that I could hardly speak. You know when you hang up and you think of all of the things you could have articulated or asked? Yeah, that.

After I pulled myself together again, I called legal aid for my county and the attorney I spoke to confirmed that I should file the request for reconsideration. After that if I had to request a hearing, I would have to secure my own attorney – and no one wants these cases because the attorney doesn’t get paid if I don’t win my case. It’s discouraging to hear things like this because I’m having a hard enough time trying to be my own advocate with the health care professionals who are supposed to be helping me to find out what it is that’s going on. I envy the people who live in countries that don’t demonize their citizens for becoming sick and needing assistance.

I’ll see my new neurosurgeon tomorrow to talk about the possibility of another surgery now that I have jumped through all of his hoops, and I’ll meet a new neurologist on the 15th of September. Who needs a job when you have to coordinate everything for your very own Carousel of Crap?

Three Is A Crowd

Posted on by akiwifreund

For the past, oh, two decades or so, men have been trying to talk me into three-or-more-somes. I’ve been accused of turning down the requests without knowing what I like, which is completely not true. I like men. Specifically, I like one man at a time. It’s tough to believe, I know – with the easy access to free porn on the internet (Pornhub, Youporn, XHamster, etc.), it’s pretty much shoved in your face as a consumer of sex that if you are a woman, you should want to fuck both men and women, and it should be enough for the women in porn that the men and/or viewers get off on what they are doing, not the woman who is actually going through the experience. I also blame the phenomenon that seemed to start right around age 23-ish for me, which was that women began making out with each other on the dance floor and in bars if they knew that they could gain attention from men. I’ve heard the theory that women are a lot more fluid in their sexual preferences than men are, so maybe they enjoy making out with their female friends, but I know that getting attention is a huge payoff. The problem with that is that men are now conditioned to look for that in every woman they meet, so if a woman balks at that demand, then the man moves on to the next tasty morsel.

My first live-in boyfriend was nerd before nerd was cool. He was also hooked on porn and had had some bisexual girlfriends before dating me, and he hoped to convert me into inviting others into our sex life. We even went to a swingers’ club one night when we were still living in Albuquerque. It was a bust though – not many people were there, and the three men who hit on me were in their 50’s and slightly inebriated. The bigger problem, though, is that I wasn’t ready to bring someone else in, but I was trying to please him.

A man I fooled around with was, well, very good at what he did, so he probably could have talked me into anything. He told me that he had a buddy from the gym who would be willing to do a threesome. I was tempted because it wasn’t the usual request of going at it with another woman, but I had some hard limits that I wasn’t sure would be honored because I didn’t know jack about the other guy. I don’t ever like to feel outnumbered, whether it’s with trying to wrangle toddlers or penises or anything else that has the ability to turn an experience immediately to shit.

A Greek guy I dated in Ohio talked me and another couple into a post-hot tub rendezvous, but that quickly soured for me because all my boyfriend would talk about was how hot the other woman was, and if he was taking care of her, she would have orgasmed immediately. He got his chance and he was proven wrong. (Pro tip: If you’re going to tell your girlfriend over and over how other women are prettier than her, don’t expect hero worship.)

Through a social group that I belonged to in Phoenix, among the many people I met, I became friends with a husband and wife with a young child. The husband was a nurse at the hospital where I volunteered, and we met while I was in my first year back at school to earn my RN degree. The wife provided writing and grammar services on the side, so I had some things in common with both of them. About six months into the friendship the couple explained that they had an open marriage and they were both interested in me. After I told them that I was the straightest girl they knew, they seemed to accept it and we continued our friendship. One night after the husband and I were hanging out with a group of 10 or so at a bar, he propositioned me and told me that his wife understood, and that he had her permission to have sex with me. I thought to myself, “Okay, I haven’t tried this before where everything is out in the open, so I’ll give it a whirl.” The husband asked if he could have some privacy in my living room to call his wife so they could talk about it again before anything happened, so I was not privy to the conversation. When he joined me in my bedroom, he told me that he told her what was happening and made sure she was okay with it. Can you guess what happened? She wasn’t okay with it. She called me, and then she called him, and after questioning me and him thoroughly, she determined he lied to both of us. Oh, yeah, and he was also screwing another married woman on the side. And the married woman he was screwing had another guy on the side. Are you keeping up with the math? There were at least six of us that had to go in for STD testing. And even though she figured out that the husband was lying through his teeth and I hadn’t maliciously tried to insert myself into their (oh, surprise – not-so-open) marriage, she told everyone in our social group that I was a homewrecker. I ended up dropping out of the group only a week after all of this was discovered. I had made a lot of friends and was attending weekly events and suddenly I was out.

A little older and wiser, I’ve seen many polyamorous relationships thanks to FetLife. I haven’t seen one group of three or more people who have successfully navigated love and sex without someone having to leave, usually in tears. Whether or not a relationship works strongly depends on everyone’s level of comfort with various dynamics. For example, are you okay with your man being a “pony” for a mistress as long as he doesn’t have sex with her? Are you open to being one of three wives to one man? What if your man kisses every woman he meets on the lips while you stand there and it’s obvious to even the casual bystander that it takes a little piece out of your heart every time? And probably the worst scenario is being singled out while everyone else bands together in a group that is supposed to be all-inclusive – it can be very lonely and traumatizing to be ganged up on.

What works for me is to make a relationship work between me and one other person, because damn, even that isn’t easy. I want less strife and heartbreak in my life.

Poor Little Bird II: The Saga Continues

Posted on by akiwifreund

On my profile page on Fetlife, I specify that I am going through a health crisis and I can’t play in any way. I meant this to indicate that I can’t date, go to parties, go to dinners, Skype, sext, or email, because to me, all of those forms of communicating leave the door open to “playing,” even if it’s just writing a few paragraphs. It still requires effort and imagination. I still have to please the other person and try to fulfill their expectations.

This morning I woke up to an email from a guy who had cancer for decades, acknowledging that he is aware that I’m experiencing major health issues right now and explaining his personal experience being sick. Then he says that while I’m sick, we could still sext and get to know each other, and when I’m well we could meet and play.

I’m not quite sure how to process this one. On one hand, it’s still the idea of, “Oh, look, you have a broken wing. I’ll just fuck the other wing, k?” But since this is coming from someone who has been sick for all of his life minus one year, I know that he will understand what I’m dealing with. I also understand that he’s eager to jump into the dating pool because this is the first time he’ll be able to screw around cancer-free. He probably has a lot of catching up to do – as opposed to me, as I seem to have experimented more than your average bird in the decades leading up to this illness, so I don’t feel like I have been missing out.

Another factor that needs to be considered when sexting or emailing someone without meeting them first is that when you finally do meet, sometimes it kills your boner for the other person. I’m thinking about one date in particular where we became very sexually intimate over messenger, but when we met for a date, I immediately wished that I could take it all back, there was so little attraction to him. I feel like such an old lady now when I tell someone that I’m not interested in sexting. It’s simply not true – I love it – but now I think it would be best to limit it to men I actually know and want to jump, and only then if they can hold a conversation with me above and beyond “Show me your boobs.”

Yes, I Have a Type

Posted on by akiwifreund

I like men. Tall ones, short ones, fit ones, cute ones, nerd ones, “dad body” ones, I can find something to appreciate in many. However, there are certain things that make me stupid – panty-droppers, if you will. They are:

  1. Firemen. I mean, c’mon, this should be a no-brainer. Granted, some are cuter than others, but family and friends alike encourage this particular addiction by sending me photos and buying me calendars. Even my realtor sent me a picture from a property she was renting to five firemen in Tempe, AZ – one of the guys was posed naked on top of a bicycle out back at the pool, helmet on his head, cigarette in his mouth, and holding a rifle. He was quite fit. His leg very coyly covered up his frank and beans. It was my dream photo minus the rifle and the cigarette. He had it blown up to poster size, which made it easy for the realtor to capture and forward to me. Nearly every day someone posts a half-naked fireman (or if it’s my lucky day, fireMEN) on my Facebook wall. My best day was just a few days after I got Dumb and Angry to move out of the house, I had to call 911 to get help because I thought I had popped my shunt out of the little hole in my cranium, and I was in heaven because I had a house full of firemen. They were all running through my house telling me how much they loved it while a couple stayed with me to work me up, so as I was being wheeled out of the house, I told all of them that I was looking for a roommate. Pass that up? Not me! Of course, I was in crazy pain and had just taken a big dose of painkillers so I was high as a kite, so who knows what else I said to them. I’m pretty sure I didn’t try to stuff dollars down their pants.
  2. Tall men. My first two live-in boyfriends were 6’2″ and 6’3″, and a former boyfriend was 6’4″. I tried twice to make a date happen with a guy who was 6’6″ (he wussed out, had just gotten divorced and was too damaged to follow through), and I think the guy who told me I looked like his dead wife was at least 6’3″. What is it about the tall guys? I’m not sure. I mean, yeah, they can see the top of the fridge, but big deal. I think because I’ve never been considered small, I don’t feel like Godzilla around the tall guys, as in, “Me smash little puny men and snap their thighs like twigs!”
  3. Musicians. I’m talking real musicians, like the ones that can play seven instruments or don’t rely on electronic alterations like auto-tune. I’ve lived with two drummers who could also play other instruments. I think I would give my left pinkie finger to go out with Glen Hansard (at least until I figured out the hard way that he’s a nutter or something). I think this stems from playing a few instruments while in high school and teaching myself a little piano, because I understand what is needed in order to be really good. Kid Rock can kiss my fat ass, he’s as talent-less as they get.

What I miss the most is being able to flirt, especially when I encounter a guy who would normally be somewhere on this list. If I attempted to flirt, any reciprocation would be along the lines of, “Oh, look, the sick lady with the cane and the droopy face is trying to get some action!” I can’t walk down the street with confidence while simultaneously looking for strong biceps or shapely buns because I can’t see further than a few feet in front of myself. You could parade a tall, naked fireman playing a guitar in front of me and all I would be able to see are his toes. All of my good years are being wasted in this bed while a whole new dating pool churns in the world outside my door. It seems criminal.

Magical Medical Mystery Tour

Posted on by akiwifreund

Today was the beginning of a string of appointments to become established with a new team of doctors in the city where I have relocated. Immediately upon arriving via cab, I knew that I was wasting my time.

The building was old, maybe built in the ’60s or ’70’s, and did not have automatic doors (first clue). I took the elevator up to the third floor, and arrived in a dingy hallway with sad puke green carpet. A sign in the elevator banks told me that this floor included plastic surgery, physical therapy, neurology, gynecology, hand surgery, general surgery and pain management. Picture this: All of those specialties crammed behind two closed doors, with only two receptionists to check patients in (second clue). I’m used to going to offices where neurology takes up an entire floor and I’ve never seen a list of thirteen-plus specialties squeezed into one space. By contrast, all of the good doctors a) have cleaner floors, and b) charge more, and c) are more up-to-date on research.

I arrived with all of the copies from various doctors and notes from St. Joseph’s Hospital in Phoenix, because I (correctly) guessed that the huge stack of paperwork still hadn’t been scanned into the system so all of the other doctors can see it. I spent about ten minutes total with the doctor. Out of all of the information I provided to her, she asked me repeatedly why I had a shunt, since I didn’t have a diagnosis. I told her that it was obvious after the repeated lumbar punctures that I needed to have something continuously take the fluid off of my brain. I mean, at some point, you have to go with what you see, even if you can’t put a name to it. A name is just a name. A diagnosis is just a diagnosis. I’m a complete person, which also means that I am complex. It’s been five years, so I’m not surprised that a diagnosis is still evading all of the medical staff.

In the end, she threw up her hands and said she had absolutely no idea what was happening with me, but she would be happy to send a referral to any other physicians of my choice. To me, those were the magic words, because I had discussed one doctor in particular with one of my sister’s employees, and it turned out that he would only take patients on if other doctors made the referral (no matter which insurance company foots the bill).

As I suspected, it was not yet time to exit the Magical Medical Mystery Tour – certainly not under that roof, anyway.

Let me explain one more concept to you, and that is of the Carousel of Crap. We first started referring to the Carousel in my former work group as we faced some very specific challenges regarding office politics. The Carousel of Crap is the ride we can all relate to. You go around in circles, the music is a little too loud and whiny, you are nauseated because you ate a little too much cotton candy, you can’t get off because the ride is still moving, and there is shit flying everywhere.

I feel as if I have made a stop at the Carousel while on this tour. I can’t get off, I’m a little sick to my stomach and there is shit flying everywhere. I have to explain everything from scratch. I have to deal with doctors who aren’t interested in reading about my case. I must do my own research and try to find better specialists who are further away from my home base (read: more expensive cab fare). I’d like to tag out and have someone else be me for a while so they could find out what it’s like to be a rock star in the rare and difficult world.

There’s No One Waiting

Posted on by akiwifreund

I belong to an online support community where patients, family members and care providers can ask questions of each other or find others who are facing the same challenges. One man was trying to be proactive as the spouse of a woman newly diagnosed with a debilitating autoimmune condition, and asked basic questions, such as would it be worth it to see a specialist vs. a regular internist, and what should he expect from the insurance companies? Here is my reply:

I love hearing about supportive spouses! My mom has a very supportive husband, and my sisters do as well – we ladies have terrible genes, unfortunately.

Just keep in mind that “supportive” might mean different things at different times. Fatigue and pain are the most common symptoms of any autoimmune diseases, and what she may have been able to do one day might change the next day, and then change back that day after that. Confusing, right? It will be. In fact, there are going to be other odd things about her condition that will confound her, and you. One thing that I like to tell people in my circle is that they should not start any conversations with, “Why don’t you just _______?” If there was an easy answer, we’d have it already.

My personal experience has been that it is tougher to deal with the doctors and staff than it is my insurance company. Don’t be afraid to fire doctors and look for new ones if they refuse to treat your wife (and you) as people who are involved in your wife’s care. It doesn’t do anyone any good to just blindly follow without understanding or questioning why certain things are being ordered, like meds or tests. I don’t get along with doctors who don’t allow for an open dialogue. Sometimes I will even write down a list, and when the doc enters the room, I first ask, “How much time do we have?” and then I tell that person I have a list. The good ones appreciate efficiency. And boy, read as much as you can. Get info from reputable websites, but also look for posts on your wife’s condition from people like us. There may be times when she thinks she is completely alone – but someone inevitably will confirm that she’s not crazy, and whatever is happening is affecting someone else as well.

Just as a side note: I live in a very large city, but have a hard time finding a decent rheumatologist – no one wants to go into that field because there aren’t any cures and the patients all complain. Anyway, the last time I went to see the nurse practitioner, who I was handed off to unwillingly, he told me that if I would just lose weight, the lumps in the tendon sheaths in my hands would go away. I told him I didn’t walk on my hands, so I didn’t see how losing weight would affect the lumps. I fired him.

And my final piece of advice is that I beg you, both, to keep your sense of humor. Try to find something to laugh about every day, even if it’s at the absurdity of what is happening at that moment.

What I would like to add, though, is that I hope his spouse realizes how lucky she is. Dating at my age is no picnic, and heaping complex diseases on top of that guarantees singlehood. I’ve been left by men I have been seriously dating when they realized that the surgeries would be a constant in my life as surely as I have green eyes. That’s why it kills me that every time we get to question of who is in the waiting room for when I get out of surgery, the nurses ask me multiple times, “Don’t you have someone in the waiting room?” It’s always the women who are disbelieving – surely not all men are put off by my bald head and scars all over my head from surgeries? Believe it, sisters. There is no one waiting for me to come out the other side okay.

Can Men and Women Really Be Friends?

Posted on by akiwifreund

Recently, I had to cut off a friendship with a man I have known for 10 years. I did it very deliberately and specifically told him why we could no longer be friends – as opposed to other methods such as always appearing to be too busy, or never answering calls/messages.

At the beginning of this month my sister passed away, and ten days later, a friend passed as well, both from cancer. Both were young, and their cancer took over their bodies very quickly. I felt as if I had been crying non-stop since I moved to Minnesota. So when this friend, Clueless, texted me about taking care of destroying old, useless MRI films for me, I told him what happened. This is how he responded:

“How old was he? How did he die?”

Now, let me rewind a little bit and tell you that I had told him when my sister was sick that it was imperative that I move back to MN as quickly as possible so I could say goodbye to her. His response was, “Well, WHEN is she going to die?” Up to that point he had been calling me to complain that he didn’t have any friends, and the people he had considered himself close to – me included – were all leaving the state and he wasn’t going to have anyone left. So when he started quizzing me about the friend who passed, I ended each short answer with, “Why?” After the second time I responded with “Why?”, he told me he felt as if I was fishing for condolences.

Fishing for condolences.

He told me that he was justified in demanding that I defend why these deaths affected me.

Let me go back even further to February 20, 2013. That was the day I had my third brain surgery (I’ve had 10 at the present date), and I was lying in my hospital bed, in horrible pain as the anesthesia was wearing off. I got a call from Clueless. He wasn’t calling to see how I was doing; instead, in his most whiny voice, he said, “This is day one without Nasty, it’s your job to keep me from calling her.” Nasty was his ex-girlfriend, whom he wasn’t currently seeing, who ended up giving a cable guy a BJ like she was living out a porn scene, and Clueless found out about it. Nasty was a very mousy woman with glasses and braces who called in sick at least twice a week at her workplace because she didn’t feel like going to work. The only reason Clueless was so attached to her was that she is a swallower. They had nothing in common, fought constantly, and she didn’t understand any of his cultural references because she was at least a decade younger than him. That day in the hospital I tried to follow his rantings, but he got pissed off when I dozed off, and hung up on me telling me that he was going to call back the next day and quiz me about what he said. And he certainly made good that promise.

Let me go back even further. In 2005, I joined an online socializing group. We would sign up to events listed on a calendar, hosted by other members of the group. It was a great way to meet new people and try new things. I hosted a few events myself including a dinner night at an Ethiopian restaurant. Cluless joined the group at around the same time. At the events, we would often gravitate towards each other, always laughing and sharing stories. We ended up dating. Now, the length of the dating varies according to whom you ask; we lasted about six months, but Clueless says it was only one month because the rest of the time he was trying to find someone better to date. He also had a list of 42 qualities he was looking for in a mate. I met all but two because at the time I had already lost all of my hair and so didn’t meet his minimum requirement of shoulder-length hair, and my bachelor’s degree came much later. At the time we were dating he wasn’t working and he was getting his food from the food bank, but was still convinced that he should buy an investment property. Clueless would often tell me that he was different from everyone else – he really, really didn’t want to work, and he wanted all of his income to be passive income. No, really. So when he told me he was going to have his mortgage broker cook the numbers so he could qualify to buy another property, we got into it. (By the way, #3 on his list was to have a girlfriend who would NEVER question and always tell him he was doing the right thing.) During the fight he told me I obviously didn’t know what I was talking about because I had never owned a home. It didn’t matter to him that I had already been in real estate for 12 years at that point; he had just gotten his real estate license six months prior, and that outweighed any experience I had. I told him that the crazy prices in the market weren’t going to last and that he shouldn’t count on a house becoming instant income, and he obviously couldn’t handle taking on another mortgage. (Incidentally, six months later the market crashed and his properties were sold at 1/3 of their high values. He is still kicking himself 9 years later.)

Anyway, it got ugly. We didn’t talk for a year and a half. When he contacted me again, it was to tell me that he didn’t know why we broke up. I reminded him. He said it wouldn’t have worked out anyway because it always weirded him out that I don’t have hair. Lemme just tell you that he’s a few inches shorter than me, is losing his hair, and doesn’t care for his teeth, so his rotting mouth smells like moth balls. He’s completely obsessed with appearances and it kills him that other men are taller than him, and he has spent thousands of dollars on hair products. He doesn’t see the merit in making an effort with his teeth.

Since reconnecting, Clueless and I have kept in touch and even had times where we could comfortably be friends. We’ve shared birthdays, movie nights and game nights. We did not, however, resume dating. I couldn’t view him the same after knowing that he respected me so little.

Besides the phone call I got on that day of surgery and his jerky attitude with my most recent losses, there have been other times that he has not acted in a caring manner. For example, whenever he wanted to socialize, he would insist I drive 60 miles round trip to his house, because he could not handle driving from his workplace to my house, which were only 2 miles apart, and for all but 8 months in the last 5 years I haven’t been able to drive more than 2 miles or be upright for more than 30 minutes, if at all. In other words, if I couldn’t get myself to his suburb, he wouldn’t waste his time with me. Also, during one of our conversations in the last year, he told me that women do not age well, only men, his mother included.

So when I told him that I was no longer interested in being friends, he became very defensive, telling me that he was a much better friend than me because he would always reach out to me (and say incredibly shitty things!). I blocked his email, phone and Facebook accounts.

It doesn’t help his case that after I left Phoenix he invited himself to my friend’s house under the guise that he was sad that I left and he ended up trying to force himself upon her so that she had to push him off of her and kick him out of the house. He was mad. I was tempted to bring that up when i was telling him to fuck off, but why drag her into it? He thinks he has some magic micro penis that is going to put girls under a spell if he just waives it around.

Maybe the problem isn’t whether men and women can be friends, but rather what kinds of patterns of behavior do we fall into because of our history. When I think about what I enjoy out of any friendship, it’s sharing adventures and quality time together, and there’s give and take, plus a fair amount of respect for both parties towards the other. Ultimately I have decided at this point, Clueless can kiss my fat ass.

Goodbye, My Almost Lover

Posted on by akiwifreund

In 2013, I was kind of limping through the year. I had surgeries on February 20th, May 20th and May 26th, and by the time I flew back to Minnesota to attend a high school reunion and help my parents with organizing their house, my shunt had already formed a huge bubble in my back when it cracked after only being implanted for a month. I had just seen my neurosurgeon the day before flying out and he had given me the okay to leave Arizona because besides the large collection of CSF under my skin, I seemed to still be functioning.

What is really different about the school that I graduated from is that the majority of us lived on campus in a dorm, much like college. Only juniors and seniors attended, so the people in my graduating class were together for two years, and the class before us and after us were around for half of our tenure there. The advent of Facebook was really a boon in our attempts to stay connected with our classmates; we came from all over the state of Minnesota to attend the “Fame school” and basically felt largely that we were the rejects of our old schools because we were more intense about our art areas than most – and let’s face it, just different in general. So when one classmate organized yearly picnics for the students who graduated between 1991 and 1995 (just so there would be some overlap), we all knew that if we made the effort, there was a pretty good chance that we’d see some good friends.

I took up the task of being the event photographer. If you ever feel guilty about sitting around on your duff at a gathering, it’s a great excuse to talk to every single person who attends.

This one guy, Hot Dog (and you’d laugh if you knew his real nickname!), was in attendance. He was always in my peripheral group of friends, since he was a year younger and dated one of my classmates. He was wild. Or maybe it would be more accurate to say that he had a wild mouth. He always looked a little wild, with flyaway frizzy hair, cherub cheeks and tree trunk arms, but his cutting wit was dangerous. I always thought of him as being an obnoxious younger brother while we were in school. If there was a way to make jokes about dead babies and grandmothers, he’d be the one to do it. And it was never at a quiet volume. Never.

True to form, while I was visiting with Hot Dog at a picnic table with a couple of other friends, he lifted a cheek and let out a fart. He did another one when I whipped out my camera, saying, “I was just blowing Brad a kiss.”

Only two days later, when I was back at my parents’ house, my shunt went into total failure and I lost most of my vision. I had to fly back to Phoenix to be operated on again by my neurosurgeon because the neurosurgeons at the Mayo in Rochester turned me down – they didn’t understand my symptoms, so they didn’t want to work on me. Any plans to socialize were impossible.

But after that reunion, Hot Dog stayed in touch with me. I’m not sure if I sent him a message first, or if he initiated contact, but we commiserated over our mutual disgust for my most recent ex-boyfriend (Angry and Stupid? Dumb and Angry? I will have to look back at what I nicknamed him initially.), because we were all classmates together. He actually married (and subsequently divorced) the classmate that he dated through his time at the arts high school; they were together about 13 years before she found Jesus, and I think they were as close to being soul mates as anyone could hope.

After a few months, our messages became more intense. He was always supportive of what I was going through with my brain stuff and tried to understand as much as anyone could who had never had a chronic condition himself. We had some discussions about my difficulty as a bald woman finding any men who were okay with my hair loss. It was immediately easier for me to open up to him because for him, my lack of hair never diminished my femininity in his eyes. Then I found out that some of my kinks were the same as his – not an easy feat, as anyone in the kink world knows. I’m not saying that I am anywhere as unusual as the guy who thought it was hot to have his jaw stomped on and teeth knocked out, but there are certainly more than 50 shades of dirty out there. We had many steamy sessions of sharing our wants and urges. He also talked about how good it felt to start working out again, getting back into the karate he had picked up as a boy, sweating and kicking and punching and trading fat for muscle. We discussed the possibility of coordinating a road trip for him to come down to Arizona.

And then he got sick.

At first he was joking that his intestines exploded. At least, that’s what it felt like to him. But as it turns out, after his doctor insisted multiple times that he suspected the atypical presentation was actually cancer, and his body flying apart was caused by stage III colorectal cancer. He had to go through multiple rounds of chemo to try to keep the cancer that had spread to other parts of his body under control before one big surgery was performed to cut it out. At the same time that he was going through that, I had already had four more surgeries and was waiting on another one, and was in excruciating pain for 10 months because of a leak that could not be fixed until we figured out what I was allergic to. Rather than talking about what we wanted to do to each other, our talks shifted to his fears about never having full functionality or a decent quality of life ever again.

The surgery was extensive. He had a bowel resection and they removed his rectum completely, sentencing him to a colostomy bag for the rest of his life. The surgery was not as bad as it could have been – the doctors had no idea what to plan for, everything would only become apparent after opening him – but it was certainly bad enough.

We traded more messages, but there were a few times when it sounded like he might try to reconcile with his ex-wife. Around the same time, Ping Pong came in for his final round, so I let Hot Dog know that I would no longer be able to talk dirty as we had been, but I didn’t want to lose touch. Our talks were never the same and we went radio silent fairly quickly.

Around the end of March of 2015, I saw an article about a guy who was modeling with his colostomy bag, and I sent it to Hot Dog letting him know that I was thinking of him and hoping that he was getting stronger. I didn’t receive a response. At the end of April, when I figured out that I would have to move back to Minnesota, I sent him another note letting him know I was landing very close to him. Again, there was no response. At that point I figured that he really didn’t want much to do with me after I went back to the ex and he tried to move on.

But then he died.

It was actually just two days ago. I found out because like every other morning, I started by opening my laptop and catching up on the news. That was the first thing that came up on my Facebook. It was like being punched in the stomach. From what I’ve been able to gather, they succeeded in removing all of the cancer, but the surgery was so invasive that the aftereffects were eroding his life on a grand scale. For a short amount of time he allowed pictures to be posted of some events he attended and it seemed he had taken up residence at his favorite coffee shop to sketch, but he did not update Facebook himself.

I was not the only one who was shocked by the news, but towards the end, he kept only his most loyal people close to him. I understand. I came in late and left early. But I still wish we could have had a conversation, and maybe some laughs, all better face-to-face rather than 1600 miles away, before the option was forever off the table.

On Friday we will all have to say goodbye to Hot Dog. He was so many things to so many people, but to me, he was my biggest regret. I didn’t see the diamond that was camouflaged by all of the shit jokes.

Overeager Beaver

Posted on by akiwifreund

I’ll just come clean right now and say that I’m a member of FetLife, an online site for fetishists, experimenters, every shade of sexuality, bondage, sadomasochism, discipline, and everything else that you can (or can’t) think of. Just as an example, there are discussion groups for “Ask a Male Questions” and “Ask a Female Questions” – both having somewhere in the neighborhood of 30,000 members each. Then there’s more specific groups, like “British Accents and Kinksters that Love Them” with about 2,000 members. One of my favorites is the “Return to Sender” group, which has over 14,000 members, and people will post their crazy conversations from FetLife or dating sites like Match, OKCupid and Plenty of Fish. Surprisingly, there are over 14,000 members in a CBT group – and if you don’t know what that is, look it up. Just now I found a group dedicated to sexual experiences with water balloons. (Not surprisingly, there are only 8 members of that group.) Some people – “vanilla,” we call them – may cringe and think that this site is not for them, but you don’t have to be into EVERY aspect of an alternative lifestyle to find something to relate to. I happen to like tall men, and there’s even a group for that; people just talk about how much they like tall men or guys will get on and brag about how tall they are, like “6’10” here, is that tall enough for ya?” (Hint: They aren’t really looking for a thoughtful answer, just worship.)

I joined FetLife four years ago because I was having a hard time in the online dating world dominated by Match, OKCupid and Plenty of Fish due to my baldness. Most men, no matter their cultural upbringing – and I’m not exaggerating in any way – are not okay with dating a completely bald woman. By my experience, I can go on 50 dates, but only 3 of the men will be okay with my baldness: 2 of the 3 will have major mental illnesses like bipolar disorder, and 1 of the 3 will be a fetishist. My choices are that I can go out with men who are batshit crazy (if they aren’t taking meds or aren’t on the right dosage) or I can date a guy who wants to do all kinds of dirty things to my bald head but doesn’t give a shit about me personally.

One guy that I had met through OKCupid in 2011 seemed to be a good match. We had gone on somewhere in the neighborhood of 5-6 dates, and he was a non-aggressive individual, very smart, seemingly relaxed. One night we went to see a show and had a very enjoyable night; when he drove me home, we sat in my driveway and kissed, and he started playing with my hair, which he had never done before. I leaned back and said, “Hey, I want to tell you about something I have going on, because you may feel something on my head that you aren’t used to. I am actually wearing a wig right now.” He asked me if it was just for fun, and I explained that it’s because I don’t have any hair, and I won’t be able to grow hair in the future. He backed himself into the corner of his driver’s seat as if I was his aunt trying to French kiss him. Then he said he “had to think about it” and would let me know in a few days, then he took off. Well, he thought about it, and it freaked him the fuck out, so that was that. This was just ONE experience out of many attempts to date.

I realize that I’m not exactly a prize to date since I look more like Mr. Clean than Gizelle with my bald head. It can be quite startling to see me without my wig on for the first time. I even joke that my dead father, the hair stylist, is rolling over in his grave because he has a bald daughter. Being rejected so many times over the last nearly-20 years of dating during my major hair loss has made it difficult for me to make sound choices in partners, sometimes ignoring my need to have a healthy relationship with a loving partner and settling for ass clowns instead. However, I am getting much better at spotting bad behavior and cutting it off than I used to be.

Here is a recent series of messages from a guy on FetLife who has never talked to me before:

Title:  be my friend

hell you say you want a roommate l will be that for you ,in fact l have not meet you yet but l am pretty sure if you want me you have found a husband l am very serious about this ,let me prove it to you please

Title:  I only want one

an l think you are her my god l have waited a long time for you ,lets get to know one another -you can be in charge l don’t care l love you already

And on some pictures I have posted:

l want you to marry me-an l will tell you why

And:

l am not bsing you l know that l love you,l would treat you as a queen should be

And:

i am open single an love bald lady’s please let me in your life

Okay, 1) One of the “kink” groups I belong to is “Grammar is Sexy!” – definitely not something this guy subscribes to; and 2) On everything else, just…no. I believe in a real relationship evolving over time and conversations and living experiences together, not anonymous, baseless declarations of love and devotion. This is creepy! Knock it off! It’s just one example, but there have been many others. The majority of the guys messaging me with a bald fetish offer to shave my head for me. It does not matter to them that I don’t have active hair follicles – they are in it for the illusion and the sense of power it gives them. Afterwards they want to whack off onto my head. However, the idea of my head being covered in warm snot does not get me hot.

As noted in my previous post, I changed my city to reflect my recent relocation, and immediately got a few messages. The first guy is a foot fetishist. I explained that I’m not currently able to go out either on dates or to social events, and so he started asking me questions about my current health challenges – it seems his mother died of an extremely rare blood disorder. But once we got that out of the way, he asked me to send him pictures of my feet. As I stated in the previous post, I’m not being modest when I say that my feet would kill any hard-on. I received a friend request from him a few days later; it appears that he has forgiven me for not feeding into that fantasy. Of course, he could be just keeping me in his back pocket to pull out later and try again.

The kid that contacted me Sunday reminded me of why I don’t want to raise more men. I’m tired! No – really, truly, I’m exhausted. He called and texted me a couple of times yesterday, so I sent him a quick note telling him I’d catch up with him later in the week. I guess he took today to be “later in the week” because he started calling and texting again. I told him I couldn’t talk but that I hoped he was having a good day, and he replied back, “No I’m not having a good day! Why won’t you talk to me?” Ugh – needy, demanding, self-absorbed – I can spot that shit a mile away. Still trying my hand at Minnesota nice (because I’m a little out of practice), I told him that I needed to not be dumped on emotionally or have demands made of me, because it just stresses me out and makes me sicker. I suggested that he seek out other people. His response was, “No! I only want to be friends with you!” I wrote back and said, “I don’t have the same needs you do. My preference is for you to seek out other people.” Again, his response was, “No, I don’t want anyone else, I just want you.” This is where I ditch the nice. I texted to him, “You are not respecting my boundaries. I am telling you goodbye now.” So his last message was something to the tune of, “Boo-hoo, if you change your mind and you want to be with me, let me know.” I feel pretty secure in the idea that he’s only going to hear crickets. That sheds some light on why he doesn’t have any friends too – he’s unable to interact in even a remotely healthy way.

Out of all of the online sites I have used to meet people either to attend social events or to date, it has been the most diverse in good and bad experiences. I met some great, open-minded people who are friendly and welcoming to newcomers at events. Some events have had very specific themes with people willing to teach and share their knowledge. I love that shit – we should all continuously try to learn, not just assume that we know everything and become lazy and complacent. On the other hand, I’ve met some people who are very single-minded and focused on only getting themselves off (like these individuals or a guy who wanted his jaw and mouth to be stomped on, no joke). I haven’t only had Overeager Beavers, so for now, that profile stays active.

Wait for It

Posted on by akiwifreund

This week has been full of challenges and changes. Just last night the moving men emptied my pod in record time into my new studio apartment – 375 sq. ft. as opposed to the house I used to own at 2200 sq. ft. with an additional 675 sq. ft. in the garage outside. I thought I did a really good job in downsizing until I started trying to cram everything into this little space. I smell a donation in my future.

I have to get used to the noises associated with living on a popular street and in an apartment as opposed to a house. This weekend there is a jazz festival happening city-wide including all along my street, so I hear people outside my windows TALKING (they’re drunk, so they don’t know quiet) and the clinking of beer bottles. I jump a little every time I hear someone passing by my door in the hallway – like it’s my roommate coming home and I am running around in my pajamas and no wig. Then I remember that no one is going to open my door and catch me looking garishly frumpy.

I’m not sure that it has really sunk in that I’m not in Phoenix anymore. It has only been a week since I have left, and even with the sad messages I have traded with the friends I left there, it feels more like I am on vacation (but a working one since I am filling the new place up to the ceiling with my stuff). We are also on the third thunderstorm since my arrival. The humidity makes me feel like I’m swimming through the air and I have to walk funny so that my thighs don’t stick together.

One friend wrote a quick note saying something to the effect of, “Ooooooh, I saw that you just changed your city on this site – have any men hit on you yet?” The second that he sent that, I received a message saying, “Hello tantalizing delectable dripping wet treat.” That was the title. BAM! First hit. Well, I’m not sure about it being a hit – I mean, it’s quite a leap to assume that I am “dripping wet.” Does this work on other women? Or is it like that thing where you throw a bunch of shit out there and hope that something sticks? I have a disclaimer that specifies that I’m not currently well and so cannot be involved in any activity in any way. I received another message from a different guy a few minutes later that seemed a bit more tame. He wanted to know all about my condition, so I gave him the very abridged version, and he seemed to be genuinely interested and concerned. Then, BAM, I got a request to email him a pic of my feet. Now, I would not wish my feet on anyone. I am well aware that feet fetishists are very particular in what they enjoy seeing, and it is worlds apart from my Flinstone-wide feet. I also have not been able to get rid of rough skin and calluses at all in the past two weeks. They’re just a hot mess. So while I think it’s pretty harmless to send someone pics of my piggies to give them fodder for the spank bank, I think it would put him off permanently if he saw them in this condition. I mean, what if I want a foot rub (or seven) in the future? Later I received a message from a guy (kid??) almost 20 years younger than me asking to be friends and to “connect with me and get to know me better.” He also specifically states in his information that he has always wanted to be dominated by an older woman. Yay for both of us, except for the fact that I have no experience in that realm.

Wait a second – I bet I could run that little boy into the ground ordering him to finish unpacking my new place. He would be aroused by it too. I should take a crash course in being a Domme and get him over here. I bet he would even scrub my floors.