Author: akiwifreund

New Blab Coming Soon

Posted on by akiwifreund

This happened on Thursday – Nikki and I finally got to chat and see and hear each other! Then Friday hit. Obviously Nikki was able to type this up, but both of us ended up feeling really crappy and so didn’t get much accomplished. However, we are really looking forward to having an honest chat about topics that are near and dear to us, and we hope they are to you too. Feel free to post ideas in the comments section or to send emails to healthcarebuddy@zoho.com with “Blab Brainstorm” as the subject line.

Nikki's avatarAs I live And Breathe

My good friend & fellow blogger buddy, Chelsea, & I were experimenting with Blab yesterday.

In the near future, we want to start up a few sessions & want to invite our followers & friends to participate.

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Chelsea Handler Is My Soul Mate

Posted on by akiwifreund

I just finished watching season 1, episode 1 of the series “Chelsea Does” titled “Chelsea Does Marriage.”

Okay, there are a few ways in which we are not so similar. First, she’s a well-known star. Me, I’m lucky if my sister’s dogs remember me. Second, she can drink like a fish. I can’t because I have all of these crazy diseases (but just for the record, Chelsea, in my 20s and early 30s, I could have kept up swimmingly). Third, she’s not a fan of “fatties.” Since I’m stuck in bed, I’m the opposite of skinny, and I am severely limited on physical activity.

But here is how we are so similar: First, we share the same first name (and it’s spelled correctly). Second, we are very close in age; I’m actually 9 months older than her. Third, we both are very outspoken. Fourth, our father figures have told us and the men we have dated – if we like the men enough to bring them around, which rarely happens – that we are very strong women, and require a strong man.

Getting into the particulars, Chelsea and I feel the same way about the wedding dress, the wedding ceremony, and what comes before and after the big day – we just don’t get it. I never imagined a wedding day or what I would wear as a dress or even what it would be like to want to be hitched to someone for the rest of my life. I was lucky enough to be asked to be a part of the wedding party when two good friends got married, but it was very non-traditional. She wore a black dress, we went shopping for her black knee-high boots, and her wedding march music included “Flash’s Theme” by Queen. He wore a nice button-down shirt and even got a haircut for the big day. I think how my friends treated their special day was about the same level as I would want mine.

Chelsea and I have done a lot of dating and have had a lot of sex. In fact, I felt a little sorry for her because by my calculations of when the show was being taped, I was actually getting more ass than she was. That just goes to show that men have no standards – I mean, c’mon, I’m a bald woman who is confined to bed for about 22 of every 24 hours, and guys still wanna slip me the mickey.

But we’re kind of getting to the point in our lives (and Jesus H., don’t say it’s because we’ve hit 40) that we want to see how different our lives would be if we actually had someone in our corner. And we also want to be the type of people to say, “Yes, I love ______ deeply and he is my best friend.” We need strong men who aren’t going to act all butt hurt about everything that makes us us. We don’t want to be life coaches. We want men to be comfortable in their own skin and to look around and say, “Oh, I’m going to take care of this” instead of us having to beg, plead and bully someone to put on his big boy pants and do it, and do it right the first time.

Chelsea, I totally get it on Eric Bana. He is very masculine and he loves his wife deeply, and he doesn’t let anyone cross the line or share that space he saves for his wife. I think that when spouses are that loving, we see a certain relaxation in their faces. I’m not saying that I imagine their lives are perfect or they have no struggles. I’m saying that they know that if shit goes down, they have this life partner who is going to go through the shit with them instead of making a run for the life boats. Ultimately, we want someone to have that same look with us, and we want to see it on our own faces for a change.

By contrast, we are turned off by men who are overeager. We smell insincerity as if it’s a noxious blend of Avon perfume and cigarettes. We know when men are rubbernecking to make sure there isn’t somebody better than us lurking around that they might rather hook up with, and we simply don’t have time for that. We also don’t deserve to be abandoned.

The love we give to the men who truly deserve it is hard-earned. Chelsea and I have sharp tongues and a very thin filter. Fellow humans give us our best material, so men, if you fail us, your fall will be very painful. If you live up to the task, it will be like seeing the sun for the first time.

I don’t know about Chelsea, but I’m still taking applications.

Lastly, <sigh>, here is an article where the reporter tried to put Chelsea in a box. “Is this reality television or a documentary?” I would choose neither. Just let it be.

http://www.theatlantic.com/entertainment/archive/2016/01/chelsea-does-netflix-review/426951/

Did You See That?

Posted on by akiwifreund

“The X-Files” is gearing up again, and to piggyback off of that, the CIA has released documents and pictures from the 1940s through the 1960s pertaining to UFO sightings and encounters.

The technology that was available during those decades pales in comparison to what we have now, and the world is certainly much smaller – getting a report from, say, the UK or the Belgian Congo can take seconds or minutes as opposed to weeks.

There are times when I feel like an alien, explaining my mysterious disease and strange allergies. However, I did not feel a tug at my heart looking at these photos, so I can only guess that no one has captured my mother ship on film (or the CIA hasn’t released the reports).

http://www.dailymail.co.uk/news/article-3422014/The-truth-really-CIA-releases-thousands-declassified-X-files-aliens-flying-saucers-unexplained-phenomena.html

Why Kindness Heals – By James R. Doty, M.D.

Posted on by akiwifreund

I have had really great doctors, and I have had really terrible doctors. One doctor that I knew was great and was adored by all the staff and patients took his frustration out on me one night after surgery, and I was devastated because he was delivering bad news on top of it. I didn’t “fire” him because he was the only one doing my surgeries, but it changed our interactions.

Doctors, may the force be with you. It’s not an easy path, and there will be stumbles, but I hope that you have rewarding interactions with your patients.

Kindness Blog's avatarKindness Blog

As a physician specializing in neurosurgery at an academic medical center, I appreciate the unhappiness many patients have with the present healthcare delivery system that is rushed, bureaucratic, non-caring and technology-focused.

In the U.S. we spend more per capita than any other industrialized country, yet the outcomes are some of the worst in the world, with the highest levels of patient dissatisfaction.

What is the solution? Francis W. Peabody, M.D. said in 1925 that,

“the secret of the care of the patient is caring for the patient.”

These words are even more true today and are now backed by an ever enlarging body of science that demonstrates that kindness, compassion and empathy have a profound effect on healing. This new body of evidence spanning psychology, neuroscience, and even economics reveals that as a species our default mode is not one of self-centeredness but that we are wired…

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A Step In The Right Direction

Posted on by akiwifreund

There’s a little release party going on for Barbie, and it signals a change in awareness and acceptance. Hooray for that! All of those years of articles explaining that Barbie’s measurements would leave her on all fours with missing ribs to account for her mind-blowing tiny waist have finally been heard. Barbie will come in petite, tall and curvy, as well as different hair colors and skin tones to be a more realistic reflection of our American society.

http://nytlive.nytimes.com/womenintheworld/2016/01/28/meet-barbie-in-her-new-forms-petite-tall-curvy/

I quite like Quartz in general for human interest stories, including the Barbie makeover. Here is their take on it (and incidentally, whomever dressed Barbie in the first shot should be shot, because the cutesy tank top says “Be Your Self,” with no hyphen to indicate that it should be “yourself,” as in, one word with a hard return between syllables):

Curvy, petite, and tall Barbies will do nothing to empower our girls

I think they may have felt a little pressure and saw true competition from the Lammily doll, which was created through a crowd funding site and is now going into large-scale production. The Lamilly has far more realistic measurements, flat feet and honorable career outfits. I hope that the “new” Barbie doesn’t push the Lammily out of the market. Options must be celebrated, and small businesses supported. It shouldn’t take crowd funding to get a sensible role model to girls and boys for mass consumption. Every little message we send out into the universe regarding women’s bodies, who owns them and who has a right to dictate what they should look like makes a difference in how children create their own values. Why not embrace inclusive standards rather than exclusive? (BTW, some of the pics on the Lammily site depict girls reflecting on periods – something you’ll never see Barbie doing, but every female with a functioning uterus and ovaries goes through. Why not make it a safe and open topic?)

http://lammily.com/

Just as a side note, I happened to access my blocked call list today because I had to add another solicitor in my phone (they always find a way to get around the “Do Not Call” government list), and I noticed that Nashville called yesterday. That was the first time in three weeks. I guess he got tired of being milked for money by the fake profile Russian and Chinese “girls.” He’s going to keep singing the same song about how he’s never broken up with anyone, and he just doesn’t understand what’s going on. Sure ya do, Nashville. You got caught jerking off. Here, I’ll get you a Barbie doll…………

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.