St. Paul

Dating Whitecoats

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

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

Cupcake or Cesspool?

Posted on by akiwifreund

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

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

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

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

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

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

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

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

Here’s a quick one from California:

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

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

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

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

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

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

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

Clearly, Creeptastic Man.

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

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

<SIGH>

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

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

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

<SIGH>

Send Up The Bat Signal

Posted on by akiwifreund

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

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

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

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

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

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

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

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

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

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

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

The Weirdness Of You

Posted on by akiwifreund

Let your freak flag fly.

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

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

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

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

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

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

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

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

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

It’s Raining Johns

Posted on by akiwifreund

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

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

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

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

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

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

Hey, Peter Pan, I’m Going Home Now

Posted on by akiwifreund

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

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

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

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

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

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

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

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

Would You Like Some Mayo With That?

Posted on by akiwifreund

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

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

Not Sick Enough?

Posted on by akiwifreund

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

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

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

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

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

Three Is A Crowd

Posted on by akiwifreund

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

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

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

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

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

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

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

Poor Little Bird II: The Saga Continues

Posted on by akiwifreund

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

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

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

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