Minneapolis

Me and Ziggy

Posted on by akiwifreund

 

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

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

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

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

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

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

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

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

Pain in the Ask

Posted on by akiwifreund

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

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

 

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

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

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

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

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

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

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

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

The Unbearable Lightness of Saying No

Posted on by akiwifreund

I wish that saying “no” to suitors was taken seriously.

I feel like I should rename the Quiz Master to Mr. Up Your Ass. (https://thesickandthedating.com/2015/10/29/whats-going-on-with-your-face/) Like clockwork, he has contacted me on all of the major holidays; I fully expect a message wishing me a happy new year even though I had to resort to telling him to knock it off when he persisted.

I don’t like resorting to being blunt or nasty, but even more than that, I hate being cornered, forced, coerced or manipulated into agreeing to something that I truly have no desire to take part in.

Many years ago, a co-worker and I were having a casual conversation about dating and attraction. He said that when it came to women, even if they were shaking their tail feathers at him, he really had to be hit over the head with a mallet for a woman to get the message through to him that she was interested in him. After being told in no uncertain terms that she desired him, it was his green light to go.

It is his voice that I hear when I say “no.” Because he said he had to be hit over the head to get the message, I no longer hesitate to pull that out of my stash of tools.

I signed up for the site datemyschool.com a year and a half ago in Phoenix while I was still getting surgeries and there was a better possibility that I could eventually resume normal activities. I had a conversation going with a guy down in Tuscon for about a month, but I got the overwhelming feeling that he would try to go back to his ex and reconcile. His profile disappeared and since it was abrupt, I’m pretty sure I called it right. I didn’t have any communications with anyone else.

A year ago I received this huge message that was obviously copied and pasted. It started with, “Hello Sweetie!!!!!….how are you today?….i just want you to know that I am soo intrest in you…” and so forth. After about the fourth sentence I stopped reading. He was going on and on and on and on about himself. There was nothing in there to indicate that he actually read about me and wanted to discuss whatever it was he thought would make us a good match.

Yesterday I received the EXACT SAME message from this guy. This is a clear red flag to me that he’s not going to be easy to communicate with because he is obsessed with telling women all about himself, and does not seem to care that he is copying and pasting and sending the message to the same people repeatedly. He also didn’t want an actual back-and-forth conversation.

Yesterday I was also interviewed for a rare disease podcast. My interviewer, Danny, asked me if I ever used my disease as an excuse not to date anyone. At the time, my answer was no. Today my answer is yes.

Here is our exchange. I was trying to be nice, to subtly send dude on his way.

Me:  Hi. I appreciate your enthusiasm, but I am currently going through a health crisis and so cannot travel. I wish you luck in your quest.

Him:  hello thanks for your msg .. hope you are doing good .. well i dont have any problem .. i can travel to meet you . but i 1st want to get to know you well .. so plz let me know how you feel ok ?

Okay, so he missed the message about the fact that I’m going through some major health issues. I decided to try another tactic.

Me: Thanks for your well wishes. I don’t feel well enough to carry on a long-distance relationship. Right now I have to concentrate on doctor appointments and rest.

Him: hello hope you are doing good there ?.. yes Oregon, Roseburg is where i live now… but i enjoy travel to anywhere, so I am willing to relocate so you don’t have to worry about the distance at all… but for now i just want to get to know you well i think that’s the best start…

Nope. Ignored my reply about not wanting to carry on a long-distance relationship. Well, that and he keeps asking me if I am doing good. Um, no, Bubba Gump, there is nothing in my replies that everything is just peachy. So….

Me: I’m telling you in the nicest way possible “no.” No means no. You are putting more stress on me by ignoring what I am saying, and when I get stressed, I feel even worse. Stop now. [My blood pressure is up at this point.]

Him: ok im sorry .. thanks

In his big, long monologue that he sent to me twice, he had some line in there saying, “I am not the jealous type but I do believe in being honest and you have to earn the trust of others. I have been burned in the past so my heart is fragile, so handle with care.”

I don’t see anything in his actions that indicate he is fragile. On the contrary, he completely bulldozes my replies and continues on his merry way. This DOES ring of the jealous type too – he feels entitled (to whatever is in his circle, be it a woman or whatever), and that immediately eliminates trust. He wants attention, he wants it now, he wants it on his terms.

What happens when men don’t accept “no” as an answer? Guys like this one thrive in our community, ordered by a court to keep a distance of 10 blocks away from his target at all times and pay her restitution of $9,000. He also got a restraining order placed on him for 5 years. Seriously, what does a restraining order and parole do? They certainly don’t stop him from killing her, if he decides that’s a solution for being spurned. I don’t see anything indicating he’s been ordered to take meds or go to counseling, but he’s obviously unstable. So basically he’s been told that this behavior is not very nice, and he’s been sent on his way with a pat on his head. Now he’s sitting at home and obsessing over how he’s going to try to get around the restraining order – I mean, if she receives a severed goat’s head with no return address, she won’t really know it’s from him, right?

http://www.startribune.com/the-stalker-of-the-current-s-mary-lucia-receives-probation-and-five-year-restraining-order/363852911/

Let’s change our dialogue. Let’s stop saying that women must have done something or worn something to invite violence against them. It is not criminal just to be a woman. It’s not criminal to turn down the advances of a man.

 

A Prayer Before Dating

Posted on by akiwifreund

Today, a good friend posted a surprising quote from her Christmas Eve church service: “Lord, touch us where we need to be touched.”

Amen to that!!! I mean, that’s almost exactly, word-for-word, the prayer I say before each date. Well, okay, mine is a little more elaborate: “Lord, please let him have clean teeth, pleasant breath, an unsloppy kiss, magic hands, a great personality and recently bathed bits.”

This holiday is a bit rough. First, I’m no longer in Arizona and gathering with friends to feed ourselves silly and play games like Cards Against Humanity. They are all my “other” family. I have hosted as few as one and as many as ten friends at my house, depending on if they had already been extended an invitation or they had family in the area. I have always made sure they had presents under the tree. I try not to think about this or any aspect of my former life, because it inevitably causes tears.

There is also a gap with our sister passing in July. Her absence also brings tears. This is the first time in about 23 years that I, my other sister and our half-brother are in the same city around Christmastime, and it would have been perfect to have our oldest sister here too. We are still scattering a bit – our brother is heading back to Wisconsin to be with his girlfriend and her family for the holiday. I wonder if we will all ever be in sync; none of us has experience in how to act like siblings as adults living in the same area, and I watch friends who have mastered this skill with envy.

And of course, there is no soul mate under the tree. Santa baby, what the hell???? It’s too soon for me to be able to tell if the person I recently met is a match; we have a few strikes, including my inability to drive, our distance (50 minutes on a good day) and his recent purchase of a puppy (since I’m deathly allergic). He has a good heart, though. Right now we are enjoying each others’ company.

This is a difficult holiday for a lot of my friends who are struggling with illness, loneliness, isolation or job loss. I don’t have any words of wisdom to pass along. All we can do is get through the next week. Maybe what we have wished for this Christmas – a job paying a living wage, gatherings with friends, a loving partner – will show up, but just a little late.

Below is a picture from my house in Phoenix when I had two living rooms and decorated two Christmas trees. Again, tears. God, I loved that house and the life I made in Phoenix. But happy holidays to you, wherever you may be.

2ChristmasTrees

Hope for the Hopeless

Posted on by akiwifreund

I had a date yesterday.

We met on OKCupid. He complained that women weren’t responding to his attempts to start conversations. I complained that men were opening with sexual demands. I’ll call him Nashville, since he is from Tennessee and still has quite a pronounced twang to his speech (which I think is adorable).

First we were chatting through messages on OKCupid. Then we graduated to texting on our phones. Though I haven’t asked him, he must have wondered if I was being flaky because I didn’t start texting right away, but I was worn out from a couple of doctor appointments. Then we graduated to actually talking on the phone; the first time we talked we were on for 3.5 hours, then we got on later in the evening and chatted for another 3.5 hours. Then we made a date.

It was just supposed to be a lunch date, and really just a coffee date, no food involved. I picked a spot two blocks from my apartment. We walked from my place, and luckily I didn’t end up getting the droopy face by the time we got back to my flat. Nashville asked if I had any plans for the remainder of the day, and if not, would I like to do dinner as well? I was totally game since we seemed to be getting on so well. We got comfortable in my little shoe box flat – he on the couch and I laying flat on my bed – and we spent the afternoon watching music videos from the ’80’s. Wham!, David Bowie, Scorpions, Psychedelic Furs and Def Leppard all got heavy play.

Nashville and I bundled back up and walked two blocks to a pizza place where we had the most flavorful pie we agreed we’ve had in a long time. Then we went back to my little flat and made out for about an hour. Nashville and I had a very frank conversation about how neither one of us wanted to immediately jump into having sex because we both had a history of picking partners who were a poor match for our values and lifestyles. He also asked if he could see me with my wig off, but immediately my sphincter tightened up and I asked if we could wait for a later date (it’s like being doused with cold water from what I understand, seeing me like that). I wanted to hang onto some of the attraction in case Nashville decided he couldn’t handle my baldness after all because I don’t want every dating experience to be colored by my need for wigs.

When it was time for him to leave, Nashville and I discussed his work schedule and agreed that we both wanted to see the other person again as soon as we could figure out a time, which will be next week.

I’m realistic about my challenges. He is getting a puppy on December 27th – something he already planned and paid for – but he knows I’m deathly allergic. Nashville also voiced concern about having to commute to my place and the fact that I’m not able to share in the burden of driving back and forth. He lives about 50 minutes north of me. Driving that in winter weather will probably stretch that to more like 90 minutes. But we also have some things going for us, including our age and desire to have a mutually respectful relationship, and neither of us has children. Nashville also doesn’t mind that I swear like a truck driver and it seems he has been raised right – he sees women as his equal, not princesses on pedestals and not second-class citizens either.

We traded texts this morning. Nashville said, “I really like you.” I wrote back, “I really like you too.” I meant it, too. I said it without hesitation and reservation.

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

 

Good Thing I Had Chocolate Handy

Posted on by akiwifreund

Today was pretty rotten. I feel like I am writing the same thing over and over again too – that yet another doctor thinks I’m more trouble than I’m worth. This time it was my PCP (primary care physician, for those of you lucky enough to only need one every five years). We had traded emails at the beginning of this month about what I needed at the next appointment – today – so I came prepared with my list and a sizable stack of records in case they were needed.

We quickly covered maintenance meds and labs. After that, I asked her first if she would be able to send a quick note to the company managing my medical assistance to see if the state would consider negotiating prices directly with Johns Hopkins so I could be seen there. Immediately she got pissy and told me that she doesn’t write letters for anything, then asked me repeatedly what I hoped to accomplish with a letter. I explained again that the state would consider my case (since I’ve already been turned down by a dozen doctors at all of the big institutions as well as various offices in MN), and that the financial adviser from Johns Hopkins indicated that other people from states other than Maryland have had success under the same circumstances. She then asked me what I meant by “turned down;” when I told her that the Mayo wouldn’t even see me, she snapped at me that she knew that, but what did I hope to accomplish? Jesus H., I was really having a hard time dealing with her nastiness.

Then I brought up submitting my case to the NIH, and she said no way, get one of your specialists to do it. I said, “Get one of the specialists who refused to take me as a patient and told me not to come back?” Then she said she couldn’t do it because there was no way they were going to accept the recommendation of a PCP. I pointed out to her in the directions that they wanted the submission to come from the PCP. Then she said she didn’t know me well enough, to which I replied that she could ask me anything, and I brought records to back me up. She told me there was no way she was going to read my records. I gave her a summary I wrote, and she proceeded to mock everything I noted – quoting what I entered and then said, “What is this??? You can’t write this!” when I said things like, “The neurosurgeon opened up my abdomen and noticed it was red and swollen, probably from a reaction to the catheter.” I told her I had a lot of abdominal pain, and she said, “From what???? Do you think your catheter is coming out of your abdomen or something?!” I told her no, but the horrible pain started the very first day the original shunt was placed in 2011 and it has never gotten better, and the neurosurgeon didn’t notice until two years later that he could actually see the physical reaction with his own eyes when he didn’t have a general surgeon assisting him. Finally she said that I needed to make another appointment with her, rewrite everything, and if she liked what she saw, she would sign it. She also said I wasn’t allowed to talk about anything else at the next visit.

Yeah, I get it – doctors have a lot of pressure on them – but she had me in tears. I didn’t understand why she was so shitty about the stuff I asked her for, especially since we traded emails on it.

After I got home and had some chocolate (yes, I ate my feelings), I started the search for my next PCP. I found someone at the U of MN who supposedly likes complex medical cases, so I’m just waiting to get a call back to see if she will add me to her patient roster. As luck would have it, she used to work for the NIH; it would be nice if she stayed friendly with some of those contacts.

At this point, my team of doctors is pretty sparse. I have a GI doc who is going to do a biopsy next week of my esophagus; I have an OB/GYN for my lady parts; I have a dermatologist who is going to track any skin changes since my family has a solid background in melanoma and squamous cell carcinoma; and I have an immunologist who prescribes me Epi-pens and inhalers. The problem is that none of these doctors can actually help with what has been forcing me to stay in bed for these years.

This is just one of those days where it feels really fucking lonely to be me. The Carousel of Crap rides again.

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!