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

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.