#raredisease

The Weirdness Of You

Posted on by akiwifreund

Let your freak flag fly.

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

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

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

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

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

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

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

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

Is It A Date if You Can’t Actually Go Out?

Posted on by akiwifreund

This has been a tough seven days. Last week was the 19th anniversary of my father passing away; two days later it would have been his birthday. It also would have been my sister’s birthday; we lost her in July the week after I moved to Minnesota. My father’s brother is losing his battle with stage IV throat cancer. And I got my fifth rejection letter from the Mayo, supposedly the #1 neurology/neurosurgery center in the U.S., saying they don’t think they could come up with a name for my disease or a prognosis or a treatment plan.

Like with most major obstacles, I had myself a good cry, and then I called my family and gave them the update on my denied referral. I waited until I had a conversation with my disability attorney; that did not go well either because he seems to think that there is no way I can win my case if there isn’t a name for my disease. Yet his website repeats over and over that when our cases go to court, we should focus on the symptoms and how our quality of life is affected, not the name of the disease.

I have friends all over the U.S. and in locations around Europe, so it’s sometimes easier for me to get the word out on Facebook. I feel a little silly “liking” everyone’s message of support because it feels like I’m fishing for sympathy. However, it’s also nice to know that some of my friends are outraged on my behalf and willing to write/call/tweet in order to call attention to my plight. A few people have stepped forward to say that they have media contacts, so I’m widening my reach with giving them documentation to pass along to their people. The theory is that if the doctors won’t take me, maybe the news will?? My medical coverage is through medical assistance in Minnesota so I would not have any expenses covered if I went to a different state. However, Johns Hopkins has a “remote second opinion” option (for a minimum of $550) and they will review my case without me having to fly to Maryland. I may end up doing this. However, I do not think it’s very effective because it’s one thing to read about my symptoms, and quite another to actually see my issues in person. I have taken to scaring my friends by moving the fluid around in my brain so that my face stops being paralyzed momentarily – aka my “party trick.”

I’m a very social person by nature and being stuck in bed all day and night is really wearing on me and definitely changing my outlook and attitude. Last Friday night I caved and reopened my OKCupid account after a four-year hiatus. I barely had time to update the city when I started receiving messages – I was fresh meat! Generally speaking I don’t reply to obvious copied and pasted notes who claim they like me (without knowing me), but they just restate what they have written in their profiles. I also don’t like to talk to anyone who can’t write a sentence. I know it’s a huge reach to think that I can find anyone willing to just chat and not go on dates, but I have been up front with everyone who has contacted me to let them know that I can’t go out anytime soon. Dare I say I’m lonely??? It feels so whiny to say that. Yet here I am.

I talked to about three of the 20 guys for more than a few messages – most guys were either put off by my request for no penis pictures or my warning that I can’t actually go out. One was far, far too young for me and located a good hour away, but gets kudos for truly creative questions. One was obviously a social recluse and did not do anything outside of his janitorial job, which is really a bit sad. That one would send me messages saying he was lonely and bored and he wanted to come over. I get a serial killer vibe, though, or he’s just not capable of conversation, which is just as bad. He would kill me with social ineptness. I have asked probing questions and he only answers with “yes,” “no,” “ok” and “oh.” I suggested that he check out Meetup because he would never have to spend another night alone and bored if he didn’t want to, and that way it doesn’t solely fall on my shoulders to entertain him. I have enough going on. The third guy was really, really responsive, funny, age-appropriate and not put off by the fact that my bed is getting a lot of my action. I’m actually hoping to meet that one very soon.

The last time I went on a date through OKCupid, it was with a tall, southern gentleman who was ex-military about four years ago – I’ll call him Mr. Army. Mr. Army met me out at one of my favorite restaurants in the Phoenix area. It started out nice enough, though I could tell immediately that he was used to dominating all conversations. I would describe him as being a perpetual mansplainer. Mr. Army was too old to have served in Iraq this second time around, but he made it clear that he had very strong feelings about being over there. I’m a tree hugger and liberal at heart and his very vocal support of George W. Bush and Cheney made my skin crawl.

Towards the end of the meal I explained to Mr. Army that my friend had moved to the U.S. from Iraq twelve years prior to that to marry a man through an arranged marriage, and that she was currently trying to sponsor her parents, brother and sister and their spouses for asylum because they were still stuck in Iraq. Her brother had even been shot in the leg during a failed kidnapping attempt; people in his community knew he had a sister in the U.S., and the kidnappers were hoping to extort money from her. Mr. Army became outraged and asked me, “How do you know that your friend isn’t part of Saddam Hussein’s family? How can you trust her? She has no right to be here!” I told him it was obvious she did not come from some super secret bloodline; she would not sponsor them and put her name on all of the documents if that were the case. She was not being “kept” by anyone through a super secret account. It was an insane exchange. I am not very good at keeping a poker face either.

As I was walking to my car, Mr. Army stopped me to say he wanted to go out with me again. I declined. Did he not see my face??? I’m not certain what we would have fought about on the next date, but I’m betting it would have been about guns or religion. He who squeezes his eyes shut and yells the loudest wins, right? No thanks. I’d rather have a no pride night and sit on the couch for four hours in my pajamas, sprinkle chocolate chips in a jar of peanut butter and eat it while watching “The Notebook.” If Mr. Army is the alternative to that, I’ll gladly stay home.

I Can’t Feel My Face!

Posted on by akiwifreund

I had two live-in boyfriends during my time in Cincinnati. The second one was Drummer #1, introduced by the guy who was in charge of our servers at the law firm. Apparently Drummer #1 had a weakness for women from Minnesota, with our light-colored hair and blue eyes (except mine are green). In theory he seemed like a good match for me too because of his musical leanings – besides drums he also played guitar – and he was a tech guy, which was my new field at that time.

I still remember our first date vividly. Drummer #1 was very tall (6’3″) with a big, toothy grin, deep-set blue eyes, short brown hair and a flannel shirt. He was very, very nervous about meeting me. We went on a double date with my friends, and we started off sitting across from each other at a crappy table with bad vinyl chairs while a band set up. An hour later the band was in full force and Drummer #1 managed to down four shots of Jaegermeister and two Jack & Cokes. He got up to go to the bathroom and when he returned, he sat down next to me instead of across from me, started rubbing my back and then poked his cheeks and said, “I can’t feel my face! I can’t feel my face!” Before the night was done he had four more Jack & Cokes.

I agreed to go out with him again, even though the drinking wasn’t ideal for a first date. I knew it was his nerves. Plus he kept telling me how cute I was.

It was another one of those things that turned into us spending loads of time together immediately. After the third date when he found out where I lived, he would throw pebbles and sometimes even dimes and pennies at my apartment window to surprise me and let him in. He was living with his parents at the time. After about eight months, Drummer #1 and I moved in together.

I didn’t have the easiest time with meeting his parents. I never went over to his house, he just met me out or came and picked me up. One time during the summer we were at a blues festival and Drummer #1 knew his parents were there as well, and they wanted to meet me, so we set off through the crowd looking for them. We walked back and forth and back and forth in mobs of people but weren’t able to find them, and I had no idea who to look for anyway. However, his parents saw us and didn’t call out to us every time we passed – because, as it turned out, his mother thought I was too fat and ugly for him. (Disclaimer: I was around size 8-10, pretty darned okay by today’s standards.) When they invited me to join them for Christmas that year, I absolutely did not want to go, but I did anyway. His parents ended up loving me.

Anyway, up to that point, Drummer #1 had been an irresponsible bill payer and so I had to have all of the utilities put into my name when we moved in together to avoid having to pay large deposits. For the first year that we were together he was one of the sole tech guys for a small manufacturing company. At this point my hair was falling out with a vengeance. He always wore a blue fleece pullover to work and every day he managed to pick up thousands of my blonde hairs on it like he was wearing velcro. At one point the guys he worked with asked if there was something wrong with me based solely on the volume of my hair that would show up on his clothes.

After the first year Drummer #1 switched to a job at the University of Cincinnati. For some of his time there he happened to work with a doctor who was researching cures for alopecia universalis. He would come home and tell me about seeing others like me who were examined under a magnifying glass so they could be determined to be the most extreme hairless cases for the studies. I still would never qualify because no matter what falls out I manage to retain a few sprouts of hair on my big toes. And for some of the time, Drummer #1 said that he was being sent down to the “hole” – some underground network where he would have to suit up in a big yellow suit for 2-3 days while he ran programs. He also claimed to work with some cops and even some FBI agents.

Drummer #1 made the mistake once of claiming that I was not doing enough to keep my hair. You know that old tired tune of “Why don’t you just _____?” like everyone else is the expert on your body? I made him go with me once for a session where the dermatologist injected each patch with a combination of Lidocaine to numb my head after the shots were done and prednisone to inhibit the white blood cells from taking over my hair follicles. Every session would be about 75 injections; that time, Drummer #1 said, with big eyes, that he could see the doctor flicking the needle up slightly after each injection so it looked as if he was tearing my skin a bit every time. After that, Drummer #1 never told me I wasn’t doing enough.

I finally started wearing wigs when I knew trying to keep my hair or grow new stuff was completely hopeless. At one point I purchased a styrofoam head with a super long neck so the longer wigs wouldn’t rest on the counter tops when I took them off. I would perch the head form and hair on the back of the toilet at night. Every morning for a week, Drummer #1 was so out of it that he would scream when he got out of the shower because he thought someone had sneaked into the bathroom while he was bathing. I would lay in bed nearly pissing myself laughing.

After a few months of living together, things started to slip with the bill paying for Drummer #1. We began receiving calls that our electricity and water were going to be shut off for non-payment and every time I’d have to hurry and pay them, with him promising to investigate why his payments hadn’t been processed. He claimed to be clueless as to why there always seemed to be lost payments.

Then one day in June we were supposed to be flying back to Minnesota for my 10th high school reunion. The flight was out of Columbus, a good hour and a half away, and at night, so I told Drummer #1 what time he had to be home from work in order for us to catch the plane on time. When the time rolled around, he was nowhere to be found. This was prior to the time of cell phones, so I had to call his office. When I got no answer, I called campus security and asked them to cruise around to see if his car was there. After striking out again, I opened up his top dresser drawer where I knew he put all of his receipts and mail. I was stunned to find six months worth of bills in there, all unopened, including all of the utility bills he had told me he had paid. I was incredibly angry and still panicked about not being able to make our flight in time.

The kicker, though, was when I went to get the mail before trying his work phone again, I received my credit card bill with another nasty surprise. When I had been sick the month before with strep throat and stuck in bed on my birthday, he had taken my credit card and charged up hundreds of dollars. I was LIVID.

Drummer #1 showed up an hour late at home and not ready for the trip at all. He hurriedly threw things into a bag. The entire drive up to Columbus I only had my demon voice to use on him. I told him that if he touched the mail in any way including just taking it out of the mailbox, I would get a post office box and he would have to wait for me to give him his mail. No more hiding and lying.  I hated him.

Five months later Drummer #1 made arrangements to buy a car through a program with the University; the payments would come out of his check directly so he wouldn’t have to worry about making timely payments. However, “something” happened where payments were still missed and his car ended up being impounded. Drummer #1 promised to pay me back but it required about $1200 to get his car back.

I had vowed to return to the southwestern U.S. about two years into our relationship. I didn’t feel any real connection with the city and the winters were depressing. I told Drummer #1 that I was moving with or without him. He seemed enthusiastic about a major change and we even took a trip out to Arizona to check it out. When we were driving back from the Grand Canyon towards Phoenix, we were stunned by a quadruple rainbow that glowed across the sky. I know now that it’s an extremely rare phenomenon, and believe me when I say that even truckers pulled over on the highway so they could snap pictures of these four perfect arcs filling the sky. I took it as a sign that I was making the right move.

When we returned from the trip, I went into working and saving mode. I put in about 70-80 hours between two workplaces to make sure I’d have money for the big move. Drummer #1, however, was still not being responsible for his bills and wasn’t making any effort to pay me back.

In January of 2003 I received a strange phone call from a girl who addressed me by name and informed me that she had been fucking Drummer #1 for at least a year. I kept calm and asked him about it when he returned from work. He said that the girl was calling all of his friends and trying to make their girlfriends freak out. I had no way to verify this because I didn’t know any of the girlfriends.

In July 2003, Drummer #1 missed more car payments. I was at the end of my rope. I told him he was on his own with figuring it out because I had to save money to move. Then in September, I received a call from the landlord who told me that he knew I was leaving, but Drummer #1 asked if he could stay on. Drummer #1 never had any intention of moving.

I bagged up all of his belongings in garbage bags and threw it all to the bottom entryway stairs. I went over to his parents’ house and told them he would need a new place to live. They revealed to me that he had borrowed $1600 from them, telling them it was to pay me back. None of the money made it to me, though. His parents told me that he had been a pathological liar his whole life and they hoped that living with me would have cured him of that. I wish that they would not have remained so loyal to their son and instead warned me.

My friend’s dad, an attorney, wrote a letter of intention to file suit if he didn’t pay me back all of the money by October 29th. On October 29th he appeared at my workplace with a cashier’s check for the entire amount he owed me, nearly $5,000.

I used that money to pay for the moving van and my new apartment in Phoenix.

It’s Raining Johns

Posted on by akiwifreund

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

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

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

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

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

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

The Professor

Posted on by akiwifreund

Yesterday I received medical records from St. Joseph’s Hospital in Phoenix for all of the 10 surgeries I had there, plus numerous visits in between to the ER. The packet included one entire ream of paper with printed chart notes, EKG readings, surgical notes, allergies, and even my signature on some documents. What they didn’t print out on paper they included on a disc for me. Now that I have to set up a whole new team of doctors to help me through this Magical Medical Mystery Tour, I figured it was best to keep track of things and distribute them myself instead of relying on others to gather the info. It’s a plus that I have a laser copier/fax/scanner/printer here at home so I make sure everyone gets what they need.

Some things were a little tough to read. For instance, nearly every time I told the neurosurgeon or the ER staff that my shunt wasn’t working like it should have been, they would tell me that everything looked fine in my scans and that it must be “something else.” After I would beg and plead with the neurosurgeon to do another surgery so I could function again, he would again tell me that everything was fine and he couldn’t say exactly why I had symptoms, but he replaced everything. One of the times was in February of 2013; Dr. N. was out of the country teaching in Japan, and I went into full failure – face drooping, blurred vision, fatigue, vertigo, and I was walking funny, like a cat with anesthesia from a vet wearing off. One nurse told me to go to the hospital four miles away from my house to see if they could treat me for headache. That hospital ended up doing a nuclear shunt study, which they had NEVER done before – I had to tell the radiologist where to inject the nuclear material in my shunt under live x-ray – and they kept me for six days. At the end of the six days they told me the study was “fine” but opted to transport me to St. Joseph’s because Dr. N. was back in the country. I was at St. Joe’s for another six days, during which time Dr. N. did another surgery on me. Now that I’m seeing what was in the report, Dr. N. actually agreed that the shunt flow was sluggish. It wasn’t my imagination and everything was not “fine.” Suckage. I wish they would trust me more when it comes to knowing what’s going on with my body.

I remember vividly the first day I went to St. Joseph’s when I was still trying to get a diagnosis. At that point I had been to at least a dozen doctors over the course of 10 months. I waited to go to the ER until the day after my birthday – I wanted to have a really good dinner out with friends, because I knew I was probably going to have to go through a little hell. At the time, I was dating this guy I will refer to as The Professor, and he accompanied me to the hospital.

We met through OKCupid. It seemed like he and I had a lot in common. He was educated and was planning his first trip to Europe. His picture was just a face shot, and I could only make out that he was smiling and that he had dark hair. We met in January after exchanging some friendly notes; in person, I was a little startled because he had on blue jeans with a bright white belt and bright white shoes, and the pants were sitting high up on his very rotund belly. The Professor’s hair was also dyed dark brown, which was unfortunate – because the very large bald patch in the back shined through like a pink baboon’s ass. I still wanted to get to know him because I’m much more attracted to brains and a certain amount of worldly experience, and so we fell into dating exclusively.

The differences in our beliefs and backgrounds became apparent over time, as they usually do with anyone you date longer than one night. First, he grew up in the middle of small town Indiana – and was exactly like the people I so desperately wanted to get away from in the little town of 300 I lived in in Minnesota for five years. He was strictly a meat-and-potatoes, salt-and-pepper guy – he refused to eat any vegetables or try anything that had flavor. He hadn’t ever even seen a bagel until he was 24!!! To him, those were exotic. He worked at the law library on the main campus of Arizona State University (ASU) and held a bachelor’s degree, but was re-enrolled for his Master’s. However, ASU let him teach one class: Critical Thinking (hence the use of his nickname “The Professor”). We would laugh over some of the things his freshman and sophomore students would come up with in who exactly they hated in the world but couldn’t explain why. But what really bothered me is that he was in his mid-40’s and his mommy was giving him cash every time he got an “A” grade on a paper, and then he’d get a bigger amount if he got an “A” for an entire class. He bragged about how easy school was for him and how smart he was. I would ask him why his mom was paying him for good grades when he had just said how easy it was for him to get high grades. He did not like that question.

The Professor was also a big fan of comics. I helped him to make a transcript of some of his interviews as he was a contributor for an online publication for comics fans. The Professor would brag about how he was a much better interviewer than anyone else, but after putting together some transcripts for him, clearly he struggled with having an actual conversation and he was asking all of the artists the same exact questions. He was just talking to hear himself talk. I am not a fan of comics myself (despite many artists trying to get me hooked), so having to sit through that stuff was a little tedious.

When The Professor talked about his trip to Europe, I really had to bite my tongue. He was likely going to be scared by some of the cuisine (though in England he would fit right in because everything is boiled), but even more importantly, it was going to be a BICYCLE tour. I knew his weight was going to hold him back; when we were simply driving in the car or watching a movie, I could hear him constantly gasping for air and groaning with the effort. The Professor was a mouth breather and sounded like a monster from a horror film. He also had terrible allergies but refused to take allergy meds because he didn’t want to be a “pill pusher.” I found an OTC brand that dissolves in the mouth and he was in heaven. Even the brands that do not have dissolving tablets manufacture incredibly small tablets, so it’s nothing to swallow them. And since when is taking allergy medicine being a “pill pusher”?

Lastly, The Professor refused to wear antiperspirant or deodorant because he said he didn’t like how it felt. He was about 350 lbs. and like everyone else in a super hot city like Phoenix, he sweated profusely. One time when we sat outside of a restaurant after a meal and enjoyed the sunset, he put his arm around me, and his sweaty pit rubbed that sour smell all over all over my shoulders and wig. I hate having to wash my wig more often than is recommended because the fibers and cap wear out faster.

We had connected at a time when my symptoms were somewhat dormant; I could still see while sitting upright and still drive. However, when I became sicker and sicker and still had to deal with our differences, I debated sending him on his way. It was just exhausting. I am not good at projecting a poker face.

The Professor was with me after I spent a week in St. Joseph’s when the group of doctors filed into my room and told me they decided to operate on me. I cried like a baby after they left the room, and The Professor held my hand and tried to comfort me. But the next week when I was home again waiting to be cleared for surgery, I decided it was time. We sat down on my couch and I held his hand and told him that I didn’t think we were compatible. He told me he expected me to break things off because I would sometimes look at him like he was an idiot. I honestly can’t remember most of the exchange, but I do know that I ended it with telling him that I thought he ought to re-think his stance on deodorant. The Professor then said he didn’t use it because he was allergic to it, and I told him that just because he was allergic to one brand didn’t mean he would be to all brands – I broke out in hives from Secret products, so I went and found one that didn’t do that to me. I also called out the fact that he told me previously that he didn’t like it, not that he was allergic to it, and that’s a big difference.

Last year, when I was having a particularly rough night with pain and medication, I sent an email to The Professor saying that I was sorry about the way that I ended things with him and that I wished him happiness. I didn’t hear back from him, but after doing some searching on Facebook, I confirmed he’s up to about 400 lbs. and is engaged. Good for him.

Would You Like Some Mayo With That?

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

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

Not Sick Enough?

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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?

The Affair

Posted on by akiwifreund

I am stuck in bed except for times that I need to run out for doctor appointments, so I have become a heavy Netflix, Amazon Prime and Hulu patron. When Hulu offered a month free of their Showtime shows add-on, I jumped all over that – I haven’t had satellite/cable TV for at least seven years and there are certain shows I was hearing about over and over regarding their quality casting and writing. I powered through “Masters of Sex” and tried to watch “The Affair.”

“Masters of Sex” is fascinating on many levels. First, it’s set in the 1950s-1960’s, when discussion of the nature of sexual response did not occur in public. Second, Masters’ and Johnson’s breakthrough publication immediately preceded The Pill, which as we should know right now, freed a lot of women up to choose if and when to become pregnant, therefore leaving a lot more doors open to pursuing higher education, gainful employment and a variety of sexual partners. Third, it’s fun to see the period costumes and sets; oh, how nostalgic we become in looking back.

If you have not seen the series and you do not know the history of Masters and Johnson, caution: spoiler alert.

They convinced themselves that anything they did to contribute to research – anything – was NOT an affair. Masters was distant towards his wife and children and refused to explore anything sexual with his wife. Johnson was previously divorced with children (also a rarity for her generation) and she took on sexual partners without pretending that the interludes were for anything but sex. So in the name of research, they started an affair. At first, they would run stopwatches and talk about plateaus, but as the proverbial fly on the wall, the audience knows they are making some weak excuses to do the nasty. After a while it just became common knowledge, at least to Mrs. Masters, that Dr. Masters and Virginia Johnson were more than simply researchers to each other.

I could only get about four or five episodes into “The Affair” because it made me uncomfortable. It’s a modern examination of how men and women perceive opportunity. Again, spoiler alert – if you want to see it but haven’t yet, look away. Half of the show is dedicated to the telling from the perspective of the woman, and half is dedicated to the perspective of the man, but it’s not immediately apparent in the first episode until halfway through. When we watch through Noah’s eyes, Alison is a young, attractive woman who wears short shorts and practically throws herself at him. Her face is open, she is giving him bedroom eyes when they interact, there is always a half smile playing around her mouth, she speaks with confidence. Noah is stuttering and fumbling, unsure of himself, but going along with what she is offering because she has invited him. When it’s Alison’s turn to show her perspective, she is perpetually sad because she and her husband lost a child, and she is the one who is unsure of herself and feeling unattractive and lost. In her eyes, Noah is the instigator.

The reason why this particular series gets under my skin is that sometimes when I send another man away, I marvel at the information that comes back to me by mutual acquaintances. Like, were we even in the same relationship? Did he hear nothing that I said? Did he think I wouldn’t catch him lying?

But what if, like in the show “The Affair,” he really believes his version of the story? And what if I really believe my own version? The three men I lived with are no longer in contact, so I can’t ask them what they think now about what happened then. Do they even remember? The first one spent all of his rent money on porn and video games. The second one stole money from me and disappeared for days. The third one was controlling and abusive. What if their version of what went down is to say that I was controlling and demanding, or, I don’t know, wore unattractive socks? How can you even dispute something that the other person takes as fact? Does it ever work to try to change someone’s perception?

And then there’s Josh Duggar. I posted the quintessential meme on Facebook last night: “Marriage is between one man and one woman…and my sisters…and that chick from Ashley Madison.” He’s spending a lot of time now saying he’s sorry. I wonder how he justified all of his actions? When you strip away his church and his parents’ protection, there isn’t much left to hide behind. Duggar can’t claim he was seduced by his sisters. He can’t cry that he was duped into creating two accounts with Ashley Madison or that he didn’t make the profiles himself, since he very deliberately entered his grandmother’s address as his own. Also, is he (or his dad) going to waive the magic penis around and say that Jesus forgives him?

Poor Little Bird II: The Saga Continues

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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

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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.