Month: January 2016

Preparing for #RareDiseaseDay: Do stories change anything?

Posted on by akiwifreund

Valuable online “meeting” to discuss our impact in the healthcare field and in the general public when (and how) we tell our stories.

Colleen Young's avatarColleen Young

By Emma Rooney (@blumencasey)

Headshot of Emma Rooney Emma Rooney

A rare disease is an uncommon disorder that on its own affects a minute percentage of the world’s population. Despite this rarity, when you look at rare diseases together, the list of identified diseases grows beyond 7,000 conditions, the highest percentage of these genetic. Rare Disease Day was started in 2008 by EURORDIS (the European Organization for Rare Diseases) to place a spotlight on this often neglected health priority. According to the patient advocacy organization Global Genes, rare diseases affect 350 million people worldwide. While rare diseases are extremely diverse, many people living with a rare disease confront misdiagnosis or having no diagnosis, nonexistent treatment options, and major inequities in accessing care and support. Rare disease groups have a history of banding together and forming umbrella organizations to share best practices and be more effective in working to strengthen the rare…

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Gene Therapy Made Simple, Just for You

Posted on by akiwifreund

At PatientWorthy, we’ve talked a lot about gene therapy, but we’ve never really taken the time to explain it. What the heck is gene therapy? How does it work? Well, like your relationship with pharmaceutical companies, it’s complicated. So, let’s aim for simplicity. Gene therapy, according to Genetic Literacy Project, is when a patient’s stem cells…

Source: Gene Therapy Made Simple, Just for You

Modern Love: It’s Not Only Me

Posted on by akiwifreund

In early 2008, shortly after I had knee surgery, I let a new friend talk me into hitting the bars in Tempe to go dancing. It was laparoscopic surgery so it was pretty non-invasive, but I had all kinds of problems. They had already taken 2 litres of fluid off of it over the course of 3 visits, and then when I had too much fluid taken away, I had to have non-chicken-based synovial fluid injected in (I’m allergic to raw eggs). It took me an entire year to be able to straighten out my leg, even after five months of physical therapy.

Anyway, I digress; I went out for a night of dancing. Already I felt much older than everyone else at 34, when most of the crowd was 21-23, including my friend. Let me tell you, those young boys were not shy! One guy was just about stripped down from the waist up and he decided he was going to bump and grind all over my booty. I had to tell him to calm the fuck down because of my bad knee, so he just decided to hold onto my hips tighter while he pretended to bang me from behind.

I finally got away from him and had about two songs before a tall, lanky, tipsy drunk young man started dancing on me. I had an even harder time with him! He kept banging into my knee. After a while, I had enough. I convinced my friend it was time to go.

I didn’t know my friend did this, but she would read the “Missed Connections” portion of Craigslist for entertainment. She called me one night and said, “Holy crap, C., this is you!!”

Sure enough, a guy, aged 24, considered me a “missed connection” – meaning I didn’t give him my phone number when I headed out, basically. In the ad he wrote about how he “protected” my knee from everyone else. (Drunkass, you did no such thing.) I emailed him back and we traded a few emails, but I couldn’t pretend to be very interested. He was still at the binge-drinking phase.

The very first episode I listened to on Modern Love: The Podcast had to do with one woman’s experience with the “Missed Connections” section. It’s a short piece, especially if you just listen to the story and not the interview afterwards.

https://www.wbur.org/2016/01/20/missed-connection-modern-love

Look Me In The Eye

Posted on by akiwifreund

On Friday, I wrapped up (I hope) a series of daily appointments at the University of Minnesota with a visit to an ophthalmologist.

Something happened while I was waiting to be seen. Actually, something was brewing the week before, but I wanted to deny it was happening, or would get worse. I think it has reappeared after more than five years because this is the first time since July 2011 that I have not had any successful shunt surgeries for 8+ months, and my brain/brain stem are getting seriously stressed.

Normally my symptoms resolve and I can open my eyes all the way when I’m laying flat. That’s the result of cerebrospinal fluid moving away from wherever it’s pooling and pressing on the brain stem and the nerve roots leading to my face. However, the tremors do not resolve with laying down. I remember being in an MRI machine in August of 2010 and the techs yelling at me to hold still because they couldn’t get clear pictures of my neck. I had absolutely no control over the tremors. This time around, for about a week I could feel the tremors in my neck when I laid down to sleep at night. I hoped it was the worst they would get.

Unfortunately, I have not been spared. The tremors are exhausting. And it’s bad enough that the world is already swimming around me – but the tremors really scramble my brain. They make my head constantly nod “yes.” I asked the resident doctor examining me for the ophthalmology test to document the tremors, since they started when I was sitting in a waiting area close to the examining room where I would be seen.

The reason why I insisted on seeing the ophthalmologist is that I wanted to have my vision problems documented – and not how they wished I could see, but what I could actually see. It’s going to take 12-15 months for me to get a hearing with a judge for a disability determination; I want to load the judge up with proof.

A tech took me through a ptosis vision field test. In the great scheme of things, it was pretty benign; no one had to stab me with needles or get me to take my clothes off. First they do the test without altering the eye to “see” what I can see. Then after that eye is done, the tech has to tape the eyelid so that at least 20% more of the lid is lifted. Have you seen the “tape game” by Jimmy Fallon? This is what it felt like. For extra special fun, my head was nodding so much that the tech had to grab my head and hold it in place for the test.

 

Miles and Miles of No-Man’s Land – By Libba Bray

Posted on by akiwifreund

Depression comes in waves, and some are bigger than others.

Kindness Blog's avatarKindness Blog

This is the hardest blog I’ve ever attempted to write.

For the better part of eight months, I have been struggling under the thumb of a rather intense depression. This is a monster I’ve battled many times in my life; it is not new. Yet, this has been a particularly brutal one, and I’m not out of the woods yet.

As a writer, I try to write about everything. But it’s hard to write about depression. For one, there’s the fear that the minute you say, “I’m suffering from depression,” people will look at you funny. That they will nod at you with wincing, constipated face, place a hand on your arm and say, with all good intent, “How are you?” And your pain will war with your desire to be “normal” and not looked at funny by sympathetic people at parties. So you will answer, “Fine, thanks” while you’ll…

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Where Have All The Good Men Gone?

Posted on by akiwifreund

Yesterday I posted an article on Twitter from The Good Men Project site.

http://goodmenproject.com/featured-content/bots-wedding-feminism-marriage-cost-jrmk/

With the post, I said, “If men are butt hurt by women having careers and their own income, they’re not worth marrying.” Then I included the hashtag #feminism.

I always, always hesitate to include this hashtag. It’s not because I don’t believe in equal rights – I do – but some days I’m just not up to being attacked. There are a multitude of men on Twitter who create mask accounts and watch hashtags like “feminism” because they immediately jump on that thread of conversation to argue with women and tell us we don’t know what we’re talking about, and that we’re stupid, and that we don’t know how to read, and that we are emotional, and that we are fat, and that we just need a good dick to stick it to us.

The first kid that jumped in wasn’t using very strong language. In fact, he was a lot less forceful than the others, but I am thinking this is because of his age; as he gets older and continues to buy into this thought process that men are the “victims” of feminism – rather than understanding that a more equalized and emotionally connected society brings happiness and contentment to most rather than just a select few – he will become more and more angry and disillusioned about his life. When I remarked upon the fact that the ex Dumb and Angry wanted to shoot me because he felt threatened by me earning my own income (that was behind the fight I had to call the cops on), at first the kid said he didn’t know if that was true, but if it was, he wouldn’t continue discussing this topic because I would only be able to see my own experience. I keep saying “kid” because I’m guessing this one can’t be a day over 19. His next argument was that his dad wanted to be the breadwinner and his mom wanted to stay at home, though she ended up having to work. Did I deny those people exist? On the contrary, I absolutely know they do, and told him he can still find them in the 1950’s household fetish group on FetLife. I’m not speaking for them. I’m speaking directly about the men who feel threatened about women earning their own wages.

Another guy jumped in. I’m not sure if his picture was actually of him, but I’m guessing him to be about 27. His first statement was something like, “What if men won’t marry because when they divorce, the ex gets custody?” My reply was, “What if you’re assuming the sole purpose everyone gets married is to procreate and overpopulate the earth?” Then he started MANSPLAINING. He was alternately condescending and insulting. I could tell that he’s been hating on women for a very long time and participating in these “manosphere” groups and picking up their vocabulary. At one point he told me I must be “thick” if I didn’t understand what he was saying. I had restated his argument as “Marriage = children = divorce = custody.” He also pulled up some statistics saying that men work harder and longer than women (not taking into account, of course, that the imaginary children he was so worried about would be taken care of first by his imaginary wife – meaning, if the imaginary children got sick at school, the imaginary wife is traditionally the first one called if she can be reached to pick them up from school, therefore she misses work. We were also missing a chart that allotted time for each spouse for household chores like laundry, cleaning and yard work. Guys, the work doesn’t end when you leave your job). Then he started using the ultimate phrase that is the favorite of all white men from ages 18-60, and that is “strawman.” It didn’t matter what I said, he made sure that became a regular part of the exchange. Then he started calling me pet names (adding to the condescension), so of course, I used them right back. At one point I said something like, “Oh, Bunny, it will be okay. I’m sure some women will worship you – or at least you will tell them they do.”

A third man jumped in. My guess is that he is, again, white and probably around age 47. He said he would never ask “her” because if they got divorced, she would get custody of the kids and he would be ruined financially. He did not use any punctuation. Basically, his argument was the same as the 27-year-old’s: Marriage = children = divorce = custody (with a little child support thrown in). My guess is that he has already procreated with a long-term girlfriend and works at a job that he greatly dislikes; he’s one step away from living in mama’s basement.

A fourth kid (again, maybe 19-22) jumped in and said to me, “You’re a fucking retard.”

A fifth guy cutely said I just needed to get shagged. The 27-year-old agreed, then crowed about how happy he was being a white guy living in Asia (thereby revealing his oh-so-common fetish for Asian women as complacent sexual servants).

So a couple of accounts were reported for being abusive. Keep in mind I didn’t know these guys before they jumped my shit for including the hashtag #feminism. I wasn’t hanging out on the hashtags they use to talk about how stupid women are. They came over to my side to call me an idiot and a retard.

Today a friend sent an article without knowing what had transpired on Twitter. It very well could have been written about these guys. Why it resonates so deeply with me is because it seems to be EVERY man I encounter on OKCupid: not a single one I have interacted with has been interested in a relationship and commitment; rather, they want to fuck as many women as they can, and they are constantly on the lookout for a better choice. It happened most recently with Nashville, and with the guy who is currently separated and probably going to go back to his wife, and with countless others before them. Motherfucking internet.

“The systematic, quantified pursuit of women tends to make men bitter and resentful.”

This statement was written by the author of “The Game” as well as the most recent book, “The Truth: An Uncomfortable Book About Relationships.” He’s a male who has fallen into the trap of fucking around and always looking for the next best thing, never placing any value on the person he is with, and he has fought his way out of that harmful thinking multiple times. There’s a whole subset of vocabulary used in the manosphere. I invite you to read the article below. It’s the most enlightening thing I’ve read in a very long time – mostly because I realize that it’s not my imagination, and that men are actually congregating and deciding to be heartless, nasty, promiscuous, belittling, dissatisfied, condescending, derogatory and abusive. As was pointed out in the article, all of them have missed the conclusion of each book where the writer talks about how all of that behavior is destructive to the man (and women).

As one of the guy’s grandmothers pointed out, “We’re women too.” Women are not anonymous islands; we are just as interconnected as men in our roles in this society. We are mothers, daughters, aunts, granddaughters, friends. Violence carried out on women affects ALL women. It’s not okay to punch your girlfriend and then turn around and kiss your mother.

It’s a long article, but I promise you, it’s absolutely worth the read from beginning to end:

http://nymag.com/thecut/2016/01/jared-rutledge-pickup-artist-c-v-r.html#

As a side note, no one – male or female – joined in this conversation to speak up and say, “Hey, it’s not okay to call her “thick” or a fucking retard or say she just needs some dick.”

Talk To Your Doctor About Your GD ED

Posted on by akiwifreund

A week or so ago, when I was being driven to my daily appointment to get the dressing on my wound changed, the cabbie asked me if I was single. He was Somalian and he told me how if I visited his village, I would have many offers of marriage within the first hour. In his culture, it’s important to visit your neighbors and check on them. They value personal bonds. They also obviously have a serious gossip network, which explains why everyone would know I’m single in a very short amount of time. I secretly wondered if I could demand goats as my bride price.

I didn’t ask, but I wondered if he was mistaking me to be about 10 years younger than I am – that happens often. I think that the paralysis of my face actually works like Botox gone bad. I also didn’t tell him that I am not able to have children (thanks to my hysterectomy 5 years ago – BEST DECISION EVER). That aside, I’m already at an age where bearing children would be very risky. I didn’t bring up the fact that I’m also completely bald, as I think that would be the last on a long list of deterrents.

I was hit up by a 24-year-old on OKCupid today asking if 24 was too young. I wrote back that it was. It’s another somewhat terrible reminder that I am middle-aged.

Another reminder that I am middle aged: I date middle-aged men. I seem to have hit the bubble where their penises don’t stay hard or even get hard. We get to the awkward point where they are trying to shake the shit out of their dicks to force the blood to go down there, or they are trying to stuff their very soft unit in me and get pissy if it just flops out.

Then they blame me. I’m “too excited.” I’m “in the wrong position.” My “legs aren’t the right length.”

Physiologically, I am not the problem. I’m 5’5″and not considered short. Even though I had a hysterectomy, I kept my ovaries, which means that my hormones are still coursing through my body – I haven’t gone through “the change” yet. Believe me when I say that I am more than sufficiently able to welcome a foreign object.

What’s the problem with these guys? Well, weight is an issue. I fully acknowledge that I am overweight, and I notice the difference in my ability to perform bedroom gymnastics according to how overweight I am (my weight fluctuates). These guys are sporting the full pregnant belly, though. I imagine a big elastic band resting at their hips, cutting off the blood supply.  They also huff and puff from the effort; I often have to ask if they are getting tired and if they would like to change things up.

One guy was overweight (6’1″ and over 300 lbs) and insulin-dependent. Diabetes affects blood flow greatly – that’s why doctors recommend that diabetics stay away from pedicures. Any tiny nick to the skin could cause a huge wound because a lack of blood flow stymies our body’s repair mechanisms. So, yeah, his penis was definitely having blood flow issues.

I hate the smell of cigarettes and I’m allergic to the smoke, but smoking also affects blood flow to the extremities.

Some men are very accustomed to jacking off to porn. It’s alarming how much they abuse their poor penises. It’s like angry jacking off, or jackrabbit fast. There’s no way my very human body is going to be able to replicate that. It gets to the point where the men only respond to this violent kind of touch. One of my exes was a smoker AND could only do the jackrabbit thing, so when he was ready, I just had to make sure my arms and legs didn’t touch him so he could pound away. You know in movies when EMTs or doctors are trying to use the paddles to revive a patient and they yell “Clear!” to make sure no one is touching the patient when the current goes out? That’s pretty much what I had to do for the jackrabbit guy. Clear!

So guys, talk to your doctor about your goddamn erectile dysfunction. You might hear something you don’t want to about lifestyle changes. But if you want to screw like that 24-year-old who wants to bang me, then you might have to make some changes. Hell, the rest of your body may feel better too.

If you’re not willing to put in the work, then learn how to do other things that don’t involve the penis.

Don’t ever, EVER, blame me for your ED.

Stupid Phrases for People in Crisis

Posted on by akiwifreund

Reblogged from a reblog. Our pain is human, not divine. The best way to help is to actually help – unless the person in pain is ONLY asking for prayers.

Marilyn's avatarMarilyn R. Gardner

crisis

  1. God will never give you more than you can handle. While some may believe it is theologically correct, depending on your definitions, it is singularly unhelpful to the person who is neck-deep in a crisis, trying to swim against a Tsunami. A wonderful phrase recently came from Support for Special Needs. They suggest changing this from “God will never give you more than you can handle” to “Let me come over and help you do some laundry.” This strikes me as even more theologically correct.
  2. It gets better. Yes, yes it does. But right then, it’s not better. And before it gets better, it may get way worse.
  3. When God shuts a door, he opens a window. Maybe, but maybe not. Maybe he just shuts a door. Maybe there is no window. There was no window for Job. There was a cosmic battle that raged as he sat in distress. There…

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I Saw Another Ghost

Posted on by akiwifreund

First and foremost, my ass is healing. The hole used to be the size of an adult thumb, and now I think it’s more child-sized. I have been doing a daily bath with epsom salts, and my body has been doing the rest of the work with the superhealing mechanism that was triggered by the wound. The surgeon does not need to make any more hamburger.

Second, there was a lot of confusion surrounding my bed situation. I saw a doctor at the U of MN on January 4th, during which time I was “prescribed” a hospital-style bed that should also help me avoid further bed sores. I was handed the script and told to do the rest. I pulled a North Carolina and said, “Do what now?” I called my insurance company to find a durable equipment company; the insurance company told me that my doctor needed to call the insurance company first for a pre-authorization. I sent a message to the doctor who prescribed the bed, and got a message back late last Friday; when she called, the insurance company told her that I was supposed to go to the durable equipment company. So it took me a few days, but I finally tracked down a company that was contracted with my insurance company and might have what I need. I called them, the intake person laughed at me and told me that I was doing way more than I should have, and that she would work it out with the doctor and the insurance company.

Nothing is ever easy.

When I developed this issue and got the prescription for the bed, the first thought I had was, “How am I going to explain that to Nashville?” I mean, the surface area is going to be halved, but then again, it’s supposed to be adjustable, so……….

Turns out I worried for nothing. I called him over that first weekend in January and told him that I was due in the surgeon’s office Monday and that there was no way I could make a date happen on that day. We chatted for a while, and he told me about his neighbor attempting to steal his brand new puppy that he paid a breeder $1200 for. We talked about him setting up security cameras. I couldn’t seem to convince him that the neighbor “knowing Nashville was real, real mad” wasn’t enough of a deterrent from the neighbor trying again. Then Nashville made some excuse about it being late (even though he normally works 3rd shift and it was only 10 pm, so he was definitely used to being up then), and we hung up. He texted me the next day to tell me he hoped that I was feeling better, and I told him to give the puppy extra pets from me.

The day after that, I saw the surgeon again, so I had a better idea of the timeline with the healing of the hole in my ass. I called Nashville and left a message.

And then…nothing.

I waited about five days, and then I signed on to OKCupid to see when he last logged in. I hadn’t been on since Christmas, but the system told me that he was online in the wee hours of the morning on the same evening we traded texts. So in other words, Nashville was still cruising for chicks. He totally ghosted me.

I don’t know why exactly, but I’m not bothered enough to blast him. Instead I blocked him on Facebook and OKCupid, and automatically forwarded his texts to junk as well as marked his calls as automatically going to voice mail. I don’t expect him to call or text again since he cut off all communication, but I just wanted to be sure that he would have to go out of his way to figure out how to contact me.

I still have his Christmas gifts.

I couldn’t have been happier to be able to recycle his god-awful work calendar – which consisted of guys with hunting rifles hauling around the bloody animals they just shot.

I don’t think I’ll ever be able to confirm this, but I’m wondering if he got sucked into talking to women in Russia or the Philippines like my former hookup did. He is definitely the kind to give them his last penny because of some sob story.

Nashville used to tell me that he thought I was too “high class” for him, or too smart. He also bemoaned the fact that I can’t drive, but as soon as he said that, he would tell me how much he loved my neighborhood and that he would like to move to this part of Minneapolis/Saint Paul. I told him that he had to make some decisions, that there were certain things I couldn’t change, no matter what.

Rather than speaking to me directly, he chose to ghost me. Nashville always used to say that he never, ever broke up with any women, they always were the ones to break it off.

Well, Nashville, those words better stop coming out of your mouth. By pretending I never existed, you broke off the relationship.

I’m still looking for my unicorn.

P.S. – time to recycle my Star Wars cup – Nashville was using it as his spit cup when he stuffed his face with chewing tobacco

 

 

Time’s “Ten Things You Didn’t Know About Men, Backed By Research”

Posted on by akiwifreund

By Eric Barker (writes Barking Up the Wrong Tree.)

Scientific studies show:

— Being too rich and good-looking can actually hurt a man. Then again, marriage may be a bad deal for handsome guys.

— You can predict how many women a man has slept with by how funny he is.

— Yes, most TV commercials make men look like morons.

— Companies pay women more if a male CEO has a daughter.

— Poor and hungry men prefer heavier women. Rich and full guys like skinny girls.

— Attractive TV anchors make men unable to remember the news.

— What’s the chance that a man’s kids are not really his, biologically?

— Punching things does make men feel better.

— If men’s jobs didn’t affect their ability to attract women they’d be far less ambitious.

— Men fake orgasms too.

 

The first item that caught my eye was the second on the list, predicting how many women a guy has banged according to how funny he is. Testify! But what is harder to match up is the type of humor. I deeply value humor, but I’m a snob. I can’t watch The Simpsons or Family Guy. I just can’t. Even if the satire might be something I admire, I can’t relate to cartoons with moving mouths. I was cured of that by age 10.

Second item of note: Attractive TV anchors. I mean, we’ve all seen the “naked news” spots, right? Usually it’s the damn Russians putting porn stars in front of a camera. Apparently, they don’t have to be naked for dudes to lose their minds.

Third item of note: If men’s jobs didn’t affect their ability to attract women, they’d be far less ambitious. I know some guys who are there already. They are not currently camping out in my bed, nor will it be likely that they will. I have never gone around with the attitude of “I’m lazy” but I’ve heard so many men say that. More importantly, after they say it, they demonstrate it. I believe them, I have no grand illusions of changing them, and they need to stay far away from me.

I was hit up on OKCupid last night by the I’m-separated-but-probably-going-back-to-my-wife-and-kids guy. He got a new screen name.
Him: Still horny?
Me: You got a new screen name and you ghosted me. (I wanted to say, “No, fucker, I have a new hole in my ass, and not by choice.” This whole bedsore thing is really cramping my style.)
Him: I got fooled into giving my phone number out to women who live in Russia and the Philippines so I decided to start new
Did you meet someone
Me: Doesn’t matter if I did or not. No one wants to hear they are a consolation prize.
Him: just asking
Me: No you weren’t. You were trying to make a bootie call, I am just not picking up.
Him: sorry just asking

Oh, yes, he’s just so innocent! He disappeared after November and he thinks the best, most innocuous way to greet me is “Still horny?” No wonder he has only slept with 4 people in his 39 years. (I was number 4.) I sure hope his wife lets him come back home soon. I’m done raising him.

‘Scuse me, I’m off to find my poor and hungry guy, I hear they like big asses on their ladies.