Maybe I’ll Go To Stanford After All

Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health  and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.

This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.

I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)

I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.

I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.

I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.

Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.

At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.

So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.

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Travel Realistically In Your 20’s

I’m a gypsy at heart. Anyone who knows just a portion of my story always asks, “So what brought you to _______?” My answer is always, “Me.” With the exception of this move back to Minnesota to be crazy ill, I have always driven my choices – I never waited for something to be decided for me. If I set my heart on a destination, I went. I moved without knowing a single person at my chosen location. I moved without having ever visited prior. I moved with a bag of clothes, a music collection and an air mattress.

Understand that 20 years after my friend and I took our road trip around the U.S. and camped for a couple of months, the economy was much more stable than it is now. But also, for being 20 years later, the gas prices are hella affordable.

My advice if you decide to move or travel, for what it’s worth, is: 1) Be prepared to live minimally. Decide what is truly essential. Forego your mani/pedi. Pare down your electronic subscriptions. Stop buying more clothes. Don’t go out to eat and instead learn to cook well AND creatively, because that is going to save your ass when money is lean. I have survived for months on $10 a week for groceries. 2) Work multiple jobs. This will give you extra cash to save up (or pay off bills) that will afford you more travel money. It also makes you a MORE VALUABLE employee. People often ask me what I do, and my answers for the past 20 years have always included an “and”: I am an escrow assistant AND box office representative. I’m a software trainer AND a legal proofreader. Again, have a variety of skills, even if it means that you know how to assign seats for a performance at a theater as well as answer phones and direct calls, because that will save your hide. 3) Research the area you are interested in visiting or moving to. Search ads on Roommates.com and Craigslist.com to get an idea of whether rents are affordable in that area AND if there seems to be an abundance of rentals in your price range. If the rent seems steep, everything else is going to be as well. 4) It’s perfectly normal to be afraid. The best way to dial down your fear is to plan and research. 5) Don’t just talk about it, live it!

I can tell you, with all of my heart, that I regretted nothing – even when I had barely enough to pay bills – because I was in charge of my life and my choices.
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I honestly can’t stand all of the articles I read that are like “You’re in your 20’s! Quit your job and open up an ice cream shack in the Bahamas!” or “Don’…

Source: Travel Realistically In Your 20’s

I Can’t Feel My Face!

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.

The Broad Squad

CutBanana

The internet is a fantastic invention and I don’t know what I would do without it in my life at this point. I use it to search for rare health cases and symptoms like mine. I use it to communicate with my friends around the world. I watch movies and TV shows via four different streaming services while my laptop is propped over me at a tilt. I’m talking to you stranger dangers, for Pete’s sake.

One of the first ways the internet was initially used for “evil” was that producers and distributors suddenly realized how they could reach a much larger audience to pander their porn.

Another is that it is super, super easy to create a profile and an entire backstory for a person that is not at all based in truth.

Hulu has every episode for the show “Catfish: The TV Show,” produced and distributed by MTV. I was a fan of the movie, and now that I have loads of time on my hands, I am watching that show like I’m loading it up on an IV leading directly to my veins. The movie “Catfish” was made because a guy in his mid-20’s, Nev (pronounced “neev”) started an online romance with a woman long distance, and his brother and their friend taped the progress of his relationship. He is a good looking guy (dark hair and eyes, strong jaw, lovely constant 5 o’clock shadow), and the woman he thought he was talking to was gorgeous with caramel-colored hair and big turquoise eyes. Thought. Nev was crushed and confused when his journey that ended with him meeting this mystery person face-to-face. This is not how he imagined his fairy-tale story would end. Turns out the woman was a middle-aged housewife with special-needs kids who wanted to momentarily escape from her life.

Now Nev’s mission is to help others facing the same dilemma. People write to him because they have been carrying on long distance internet romances with someone who they aren’t sure is being truthful about their appearance, their job, their marital status, their gender, their location, their offspring, their names…you get the idea. “Catfish” is no longer a subject – it’s also a verb.

So, have you been catfished?

Internet dating sucks. I’ve said it many times and I’m sure I will again. At the very least, people don’t like to post their recent pictures, usually because their weight has changed from when they were 17. I get it – I would rather people see me at my best too. I actually haven’t taken any pictures of myself for the past few years because bed rest has not been kind. But I have never lied about my marital or relationship status, the city where I live, my age, my name, my gender, or any other item you can dream up. I don’t tell men up front that I’m bald, but those same men also don’t tell me if they have a 4″ dick that is bent at a right angle.

A good friend I’ll call Svetlana is still braving internet dating, and I am presenting you with just one of her stories with her permission. She had closed down a profile after feeling disgusted and defeated by the men who approached her, but she stayed in touch with a few, including one I’ll call Fernando. Up to this point she has not met him. Fernando had finally asked her out on a date, but Svetlana hadn’t had a chance to accept or decline; instead, she received this message:

Hello Svetlana, I am the girlfriend of Fernando and I don’t think you know anything about it. Since July I live in Germany. 10 days ago I came to his sister’s home in Skokie to visit him for a week, just yesterday I came home. I had seen in his phone and the text messages that he sent to you (unfortunately you are not the only one with who he communicate, at the same day another woman probably from Brasil because it was in Portugese language got from him a love message the same words that he said to me words that he said to me a lot of time, I know that because my friend translated it)…so sad because at that time I was with him, what he would do is ruthless,phony and disrespect. He used me just for his advantage and benefits, he needs european passport to stay legally in Europe and after that study in Amsterdam. He asked me to marry him, now I understand that he wanted just passport and then just cold bloody leave me for another woman. Now I know that he is just liar and cheater, he promised me never to hurt me because my ex boyfriend did it and he knew whats happened in the past to me. I am very angry, disappointed and upset what he did to me, everybody helped and like him cause he looks as innocent and lyal person but he is not like that…unfortunately not! I release my self from him. Why I send you this message? because I want to warn you, no woman deserves this pain. He promised me not to dating you when we stay together but I don’t want to share my life with somebody like him. So enjoy his company.”

First and foremost, Svetlana felt like this took a lot of courage for this woman to reach out to her and warn her. Svetlana has done the same thing when she has discovered men who have been lying and cheating, but sadly, she has had vitriol thrown back at her – other women calling her a slut, whore, desperate, and any other derogatory name you can think of. Second, she responded to the woman and thanked her for warning her, because she wanted nothing to do with men who conduct themselves in this manner. Third, she felt immense relief because this woman did not treat her badly, especially since she had not knowingly become one of many other women he was working on.

How would you react if someone contacted you to warn you that the person with whom you were conversing with or in a relationship with was being duplicitous or dishonest? Would you listen to them rationally, or would you call them names and try to shame them for telling the truth?

Svetlana suggested that she could send a message to Fernando saying, “You think you’re so clever, don’t you?” But really, I thought it would leave much less room for him to wiggle out of if she asked him when he’s planning on moving and who he is going to marry in order to get the proper passport. She did and then blocked him.

My wish is that women would stop buying into this theory and practice that we should compete against each other for the attention of men. Every woman Svetlana warned should have thanked her and cut off all ties to the liars rather than turn against her. I would love to start up a Broad Squad, where we take the time to research things like marital status, number of offspring, jobs, cities, etc., using our favorite tool, the internet (because I can’t very well drive around in disguise and take pictures). Then we warn each other. Then we believe what the other women are saying with proof to back it up. Look, I know we don’t want to think the man who is sticking his dick in us and saying very pretty words could possibly be saying the same to other women, but it’s time for the women to stop hating other women for the lying that men do. And it’s time for men to change their internal recordings from “that bitch messed up my plan, now I have to find new victims” to “I’m sorry, and I will never be a shit again.” Really, wouldn’t we all be happier if we were trying to be our best selves?

The Ex from Tex(as)

You know that saying about how you shouldn’t take a dip in the company pool when it comes to dating? (Or maybe the more succinct way of putting that is not to shit where you eat.) Well, I’ve broken that rule many, many times. How are we as adults supposed to meet anyone? And my field was traditionally dominated by men, so it was like shooting fish in a barrel.

I was in the same extremely small department at a large bank (280,000 employees worldwide) for nine of my eleven years with the same employer, and I saw a lot of changes in personnel and practices. My seat was in Arizona; my boss was in California, her boss was in Texas, and we had team members in Mumbai, India. It was decided that our group would add two more people in Texas to take calls from managers and give it the very important name of Escalation Desk so as to give the impression that fires would be lit under the people handling time-sensitive problems. We added these two people at a time that I was doing the work of 2-3 people and another co-worker, also in Arizona, was being pulled to perform special projects.

One of the two people was Mr. Texas. He and another woman were located in our Texas office, and for almost a year, they sat idle because managers weren’t calling in for expedited assistance. After my Arizona teammate and I consistently asked for overtime to complete our work, the boss decided it was time to train the Texas people in our jobs. That was how I met Mr. Texas.

He was infuriating because he was not the type of person to offer help – he preferred to just sit at his desk and do nothing. When we would have our weekly phone-in meetings, he would not participate, and if he was forced to answer questions, Mr. Texas always sounded like we were disturbing his nap.

My work group was pretty relaxed, and it was not rare for us to spill some personal info on our conference calls. We also traded pictures of volunteering and life events. When I finally saw a picture of Mr. Texas, he didn’t look anything like what I thought he would (though I don’t know what I expected at that point). He is about 6’4″, very muscular, and very tan. After he heard some of the team members tease me about my dating woes, Mr. Texas started privately conversing with me on the company instant messenger. We had quite a few “Me too!” revelations about our dating experiences. Eventually we traded phone numbers and started talking and texting during our off hours.

I still remember the first phone call. It was awkward as hell. Here I was talking to this co-worker who drove me crazy with his laziness. I’m not even sure if he picked up on that about me, or if he did, if he actively chose to disregard it because chasing a piece of ass was more important. Obviously I didn’t let that stop me either – I love tall men, especially handsome ones.

We graduated to sexting and hot and heavy phone sessions. I miss those days! It was like making out, or as close as two people could get to that while a whole state separated us. Mr. Texas and I planned our first encounter, which involved him flying over to Arizona and us getting a hotel room (because I had a roommate). At some point it was revealed to me that when he was 15, he and his friends were stupid – they were playing jumping on and off trains, and wouldn’t you know it, his leg got caught under a train. Mr. Texas only had about 4 inches left of his right femur and wore a very long prosthetic that strapped around his hips. He walks very stiff legged because he does not have enough of his femur left to maneuver a leg with a working knee joint.

Mr. Texas and I had a great first weekend together. It was not a hindrance at all that he was missing a leg, because it actually made room for me if I wanted to get my face in his junk. He was very muscular because he was a serious weightlifter. Mr. Texas’ skin felt just like what I imagined one of those hunks in a beefcake calendar would. I was still very self-conscious about my lack of hair, so he never saw me with my wig off, but the fact that two people with prosthetics actually hooked up was hilarious to me. The only time I had to look away for fear of cracking up was when he got up in the middle of the night to pee. Mr. Texas did not strap on his leg just to go a short distance to the bathroom, but instead he hopped there. Imagine this if you can, but this 6’4″ guy was hopping on one massive tree trunk leg across the room to the toilet. I guessed that he kept on his tighty whitey underwear expressly for the same reason women wear sport bras when they are active – his choice of underwear probably kept his dick and balls from bouncing around.

I made the trek to his state the next visit. He has a very large white cat with some black patches named Sugar, and of course I’m deathly allergic, so we got a hotel room. At the end of my visit, we sat on his couch and watched some TV to kill time in between having to check out of the hotel and go to the airport. I had my head in his lap, gasping and growing hives like weeds all over my face and neck. Sugar came over and at first tried to “clean” my hair (my wig!), and when she started getting frustrated by the long fibers, she completely sat on my head. Mr. Texas thought it was rip-roaring funny and refused to shoo her off of my head. By the time we left for the airport, I had looked like I was punched in both eyes and I was snotting copiously, which wasn’t at all attractive.

We took turns visiting each other, alternating who paid for the plane ticket and who paid for the hotel. It was harder to be snappy with him at work because we had been intimate, though I tried hard to remain neutral if someone else in the work group would fight with him. We even talked marriage; he’s never been married, and neither have I, but it was something we discussed as a possibility for us down the road. Mr. Texas was twelve years older than me and held onto this idealized wedding for about thirty years. I remember it had something to do with having twelve groomsmen and twelve bridesmaids, and he wanted the ceremony to be in his parents’ church (which also happened to be where Chuck Norris would attend) – they were hardcore southern Baptists.

Unfortunately, I started feeling like he wasn’t emotionally invested in me. He seemed uninterested in my life away from work and didn’t have much to say to me when we weren’t banging. Mr. Texas also used to complain that the claim “spiritual but not religious” was not a valid belief system; you either attended church or you didn’t – and I didn’t! That shot his big church wedding to pieces.

So one week when I felt like a single woman anyway because of his disinterest, I called it off. Unfortunately, two days later the bank laid him off.

I didn’t hear from him for a couple of years, but then he started texting me again. This time around I know there is no emotional connection at all, he just likes talking about his penis and where he’s going to put it. Mr. Texas also sends pictures of his fat sassy cat Sugar, sometimes even videos of her purring, always signing off by saying that he’d like to pet my kitty. In a way it’s flattering, but in another way it’s exhausting. He doesn’t have any concept at all of what I’m going through. I can’t get excited about Mr. Texas and his dirty talk when my abdomen feels like it’s being stabbed for six hours straight.

What I wouldn’t give to be able to fly to a lover again.