Month: February 2016

Now You See Me

Posted on by akiwifreund

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Don’t Ever Think ‘Equality’ Is A Dirty Word

Posted on by akiwifreund

We need women (and MEN) from all walks of life, from all occupations, from all age groups, to get on the bandwagon with the idea that equality is worth it. Already my nephews, aged 10 and 6, have started reciting the ugly words, “Boys are smarter than girls.” They certainly didn’t learn that from me or their parents. Now our work is even harder with trying to turn that thought process around (if it is even a process – because they are more parrots at that age than scholars).

I want all girls and boys to grow up to appreciate differences while embracing each other for their value as human beings first.

I want women to receive equal pay for equal work.

I want men to stop claiming all space as their own, including women’s bodies.

I want women to be supportive, rather than see each other as competition to be beat.

But in addition to that:

I want people who are labeled “disabled” to be out in the work force (if they are able) and have a social life filled with inclusion, and to be portrayed correctly in advertising, TV and movies.

I want “inspiration porn” to end.

I want the freedom to practice – or NOT practice – any and every religion of my choosing.

I want churches to start paying taxes.

I want people of ALL races to be valued, truly, but I want privilege to be acknowledged and then driven to extinction.

I want our actions to match our words.

I want choices, whether it’s the company I keep, the job that pays the bills, the food I put in my body, the chemicals I keep away from my dwelling and the doctors I see. The more we work towards total inclusion, the better our lives will feel, period.

http://www.huffingtonpost.com/entry/jennifer-lawrence-feminism-equal-pay_us_56d08bfee4b03260bf769e58?

I Take My Sex Like I Take My Tea – With My Consent

Posted on by akiwifreund

Consent, with sex replaced as tea! If you can understand drinking liquids, you can understand consent.

The Lonely Tribalist

This video was created by the Thames Valley Police November 2015. They’ve been implementing a #ConsentIsEverything campaign, which is all sorts of awesome. Why it hasn’t gone more viral is a damn shame because it is so good – mainly for its simplicity. If you haven’t seen it before, give it a watch below. It’s quite worth 2 and a half minutes of your life.

*sigh* So sad that consent can be so easy to understand when applied to pretty much any other activity, but it’s just flabbergasting to apply to sexual agency and freedom. Thank you, Thames Valley Police, and everyone else putting in the hard work to normalize consensual sexual relationships!

[Header image source: Vimeo]

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Dude, You’re Stepping On My Personal Space

Posted on by akiwifreund

I wrote this article for Patient Worthy on February 14th; since that day I got daily (sometimes twice daily) texts from this guy saying, “Good morning cutie” or “sweet dreams cutie.” The most recent ones – because he still won’t stop – say “Just got to my hotel” and “How are you?” For the life of me, I can’t figure out why he would bait me with the hotel remark because that one really came out of the blue. I haven’t traded texts with him since February 10th. Was the hotel text his clumsy attempt at a booty call? Or was it not intended for me, and instead should have gone to whomever was playing the part of his dirty little secret?

Dude, just…stop.

Boundary Waters and Dating Boundaries

Illness Army: “Diagnosis of Chronic Illness”

Posted on by akiwifreund

This applies directly. I got a diagnosis, so now what? This is a fabulous list of 10 items to remind me (and others) that the best things in life are free.

Indisposed and Undiagnosed

Diagnosis of a Chronic Illness…

At first, there is some relief. You think, finally I know what is going on. My questions are finally answered and someone actually listened. Now I can move on.

But sooner or later, depending on the person, realities of what the diagnosis means sinks in. For some, a little at a time, for others all at once. Sometimes triggered by events, sometimes by people, sometimes out of nowhere at all. Things will forever be different.

These times can be extremely distressing, exhausting, terrifying, depressing. But, the important thing to remember is you can still be happy. You can still do things, they may just be different things, or the same things but in different ways. With the right support, anything is possible.

Here is a list of 10 things you can probably still do:

  1. You can tell people you love them. You don’t have to…

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Dear Other Dude at the Playground…

Posted on by akiwifreund

We know enough now (or should) about what the path of exclusion, ridicule and shame leads to. Isn’t joy just so much better than just about anything else in this world?

Daddy Coping in Style

Dear Other Dude at the Playground on Saturday –

I couldn’t fight the need to write you about an incident between our kids.Remember me? I was the dad with the son wearing a pink dress.

Before he burst onto the playground, and as I parked the car, he was positively vibrating. I asked, “Now…you’re sure you want to wear your dress?”

He shouted in response, “Yes! Because I want to show everyone how beautiful I am in this beautiful dress!”

It was a big deal for him; and for me.

He hasn’t asked to wear a dress “out,” before. I didn’t fight it. Who cares, right?

Or so we’d like to think.

As you noticed, he couldn’t contain his excitement showing off the dress to the only two kids playing…your daughter and her friend. He skipped and twirled and chased them for ten minutes shouting, “Do you like my dress?…

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Healthy Living Update: Why Playing the “If-Then” Game Will Crush Your Chances of Being Happy

Posted on by akiwifreund

I don’t hide the fact that I’m a flawed, broken mess, and I’m okay with that. Instead, I find the little things – watching videos of babies laughing or kittens playing, or dipping my fingers into bins of endives (a la “Amelie”), or putting on a particularly comforting scent. Go forth and conquer, my fellow flawed humans. It’s a beautiful life.

Buying Cruelty Free: Physician’s Formula

Posted on by akiwifreund

Source: Buying Cruelty Free: Physician’s Formula

Well, my psychic powers have been in full force for the last week. Prime example: I wrote my “Bee’s Knees” piece before I read this one, which also talks about making conscientious purchases, including makeup products. I hope we continue the momentum.

The Bee’s Knees

Posted on by akiwifreund

I’m watching “Morgan Spurlock: Inside Man” on Netflix, and as always, he puts together thoughtful pieces about the things we should be concerned about as humans and consumers. I mean, I really enjoyed the episode from Season 3, “Morgan the Matchmaker” because, duh, dating; but there are others that really speak to my sense of responsibility to the earth and to other humans.

For instance, also from Season 3, Morgan explores trash in Episode 6, “United States of Trash.” I try not to create loads of trash. I recycle tons of stuff. But as careful as I try to be, I still generate the equivalent of a Walgreen’s plastic shopping bag of trash every week. I learned something new. Specifically, you can take those glass jars with the metal closures and rubber ring around the lid for a tighter seal to the grocery store with you and have the meat department deposit the meat IN THERE instead of packaging it, even if it’s “just” the paper. Guess what? There’s also less of a chance of cross contamination if it’s in the sealed glass jar rather than in the paper (which you might insist on wrapping in another plastic bag). Also, if you wash your glass jars in food safe dish soap, you aren’t going to pick up chemicals (like you do in containers that are half or all plastic). What amazed me the most was that the family of 4 saved 40% off of their monthly grocery bill by bringing their own containers.
I can no longer drive and stash my reusable bags in my car, but I still make it a point to bring them with me when I do my own shopping. Any time we can leave a little less plastic in the world is best, but even I know I must get better about my own consumption.

Season 3, Episode 7 is “Honey Bee-Ware.” I remember when the big study was put out about how scientists were really excited about figuring out why hives were dying out in great numbers, and they firmly believed it was the result of these little mites that were invading the bodies of the bees and then effectively decapitating them. Something about zombie bees, blah blah blah.

Really, the concern should have been focused on pesticides and herbicides. Morgan interviewed a Harvard researcher who had indisputable proof that the deaths were related to the use of (trace) amounts of neonicotinoids. The popular product “Roundup” has glyphosate, also known to cause just as many problems after being researched. When the European Union found out about the results, they immediately banned those chemicals.

The problem with the U.S. is that we allow ourselves to be guinea pigs for everything – food, cosmetics, cleaning products. We assume that our responsibility and our concern falls only within the U.S. borders, and we’ll take care of “it” later after a number of decades have passed and we suddenly have a large percentage of the population sporting eyeballs from their ears or some weirdness like that. But our trash is in the world’s oceans. We eat poisoned food, use 110 chemicals a day in cosmetics ranging from toothpaste to eyeliner to soap, and we leave smears of chemicals around our kitchens and bathrooms that we would never dream of putting in our mouths, but that’s where they end up anyway.

I mean, think about it: Would you put that Chlorox wet wipe in your mouth and suck on it like a pacifier? I’m guessing not, but somehow you have convinced yourself that it’s safe putting it on every surface you can find. Nothing is really clean unless it’s been passed over by harsh chemicals, right?

<sigh> This brings up the whole discussion about superbugs, but I’m going to think about that one a little longer before I cover it.

My new diet to combat my Lyme bacterial infestation has to be all organic (no chemicals, hormones, artificial anything), and I can’t have any dairy, gluten, soy or sugar. The “Honey, Bee-Ware” episode reminded me that there is a non-profit group in the U.S. that is trying to counteract the stupidity of the FDA and EPA and make us smarter consumers. Now that I think of it, I like the idea of not dipping my apples in a bowl of Roundup before chowing down on them. I try to buy organic when I can. I have already changed all of my cleaning products to be environmentally-friendly, and 90% of my cosmetics have been changed as well (I just have one eyeliner that I have a hard time giving up just because it’s the only one for me that doesn’t smudge, which is important to me because it makes up for the eyelashes I’m missing).

I made these changes about eight years ago after I wrote a paper and gave a presentation on the Environmental Working Group‘s database “Skin Deep” (http://www.ewg.org/skindeep/). I still have a hard time convincing people that they can find great stuff for their teeth and skin and hair that isn’t going to give them cancer or screw up their hormones, but I keep trying.

I was thrilled to see EWG add a cleaning database about four years ago: http://www.ewg.org/guides/cleaners

Lastly, EWG has a handful of databases dealing with food issues. Think of it as an adventure to be the best you can be, like you’re in the food army or something. http://www.ewg.org/foodscores
http://www.ewg.org/foodnews/
http://www.ewg.org/research/ewg-s-dirty-dozen-guide-food-additives