WEGO is a super amazing patient network that connects patents with advocates, experts, and research companies. Every year they honor the best advocates in several categories. I have been nominated in: Best on Twitter, Best on Facebook, Best Community, and Most Humorous 😂 To advance to the finals I need endorsements. You can visit my profile below to send me an endorsement.
Thank you in advance 😃👍🏻
Dear future partner,
We haven’t met yet, or maybe we have and time wasn’t ready.
We need to talk. Now. Before I fall in love with you, before you fall in love with me.
Because I don’t want my disease to cause you to leave me.
Too often I see sad posts in online support communities for severe disease groups. Like this one:
“My spouse just asked for a divorce after 25 years of marriage. She said she could no longer handle being married to my condition. I work full time, I do chores, I am a great partner and parent. I just can’t hide when I’m having such bad pain. I feel so alone. Can someone share how they got through this? How can I be in another relationship if I know my disease could cause someone to leave?”
These posts wrench my stomach. I cry, “Another one?” And I have two reactions: hope and fear.
View original post 1,276 more words
Charis and Dan. The Ankylosing Spondylitis Wonder Twins! Great read.
I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.
It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.
“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”
In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.
Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and…
View original post 1,379 more words
Many people are now aware of the “Fearless Girl” statue that was dropped on Wall Street March 7th, the day before International Women’s Day, and the recent controversy that has arisen because of it. The reason for the controversy is known, but for those who don’t frequent their Facebook new feed, allow me to enlighten you.
The statue was sculpted by artist Kristen Visbal and commissioned by McCann New York and client State Street Global Advisors. A financial corperation that claims to be promoting females in leadership. I say “claims” because some questions have arrised about their motives, if they are just another big money hungry organization using “Girl Power” to promote their buisness. This may not be the case, but if it is it makes me quite sad. I’m not writing about this arm of the controversy so I would rather not dig deeper into that. The part of the story I want to talk about is the artist perspective and ethics.
As anyone can see, the Fearless Girl is facing down the perturbed Charging Bull, an iconic symbol of New York’s Financial District. The Charging Bull was sculpted by Arturo Di Modica and illegally dropped on Wall Street in 1989. Di Modica created the bull after the Stock Market crash of 1987 as a symbol of the American people charging back from financial crisis. Due to the bull’s sheer size and weight New York City didn’t really push too hard to have the illegally placed statue removed. And, as a side note, how in the wide wide world of sports did Di Modica get the bull there in the first place? Must have been one wicked night.
Now, let’s talk about the Fearless Girl. Look at her! She is strong, powerful, and well crafted. I’d love for any girl to stand like this, facing down her problems with strength and attitude. I want my nieces to one day have this kind of “Don’t mess with me” persona. It’s totally amazing. But, at least one person has a problem with her. Arturo Di Modica.
He doesn’t have a problem with the message she inspires (at least I don’t think so). The problem is that she is facing down his work of art, and he is claiming an issue of artistic rights and ethics.
Now, there is something standing in its way. An 8 year old girl.
Now instead of the bull being a free animal, it is a horrible beast that wants to hurt a little girl. The placement of Fearless Girl has stolen his work of art. By his view, Charging Bull is no longer his and instead it belongs to the girl. So, what can Di Modica do? Actually he may have a rarely used law on his side.
The Visual Artists Rights Act of 1990 protects artists from having their works moved, destroyed or altered under specific instances. Di Modica may be able to argue a violation of his copyright under VARA if he could convince a judge that New York City modified his work or damaged its integrity in a way that harmed his reputation.
Becoming a He Man Woman Hater overnight might qualify as harm to his reputation.
On a personal note, I really hope people realize the bull was there almost 30 years before and therefore in no way should be seen as Di Modica wanting to trample little girls.
So, let’s talk ethics. For the purpose of Fearless Girl kidnapping another artist’s creation, should Fearless Girl be moved to a location where she isnt seen as facing down an “evil” work of art? Here are my rambling thoughts.
I don’t think this ethical for one work of art to take away from another work of art. Let’s play my favorite game “Jed Makes a Crazy Hypothitial”. Imagine if you will The Venus De Milo. Oh, there she is. Good imagination.
A famous statue who lost her arms in battle (insert Men In Tights joke here). Everyone knows it. Its iconic, like the bull and its meant to stand alone. See anything else around it?
Now say a new artist placed a sculpture right next to Venus of a man holding a severed arm. Either running away from her like he stole it, or holding it up to her like he’s handing it back. (I tried to find an existing sculpture like that to no avail) Would’t the new work of art be making a mockery of the Venus De Milo?
Say someone hung a paining next to the Mona Lisa of a man pointing and laughing? Or, more to the Girl/Bull example if Da Vinci hung the Mona Lisa next to an existing painting of a man looking in disgust leading people to believe the hypothetical “Man Disgusted at a Garbage Dump” is actually disgusted at the less than attractive Mona Lisa? Wouldn’t that change the view of an unrelated painting?
I think in this perspective Charging Bull’s Di Modica has a case. A good one? Maybe/Maybe not. Yes, Fearless Girl does make it appear that his bull wants to trample a little girl. (Although, seriously, what parent is letting their little girl wander around massive angry bulls?) Personally, I’d prefer people not see it as the bull wanting to hurt her, but that a girl has come upon this powerful creature and doesn’t show fear. That’s a good perspective in my opinion.
I also like what Twitter user @AKGMurray said:
They aren’t enimies, but two powerful creatures that are meeting, and after a little stare down, are going to work together. Like Iron Man and Captian America, or something, I’m not really a comic book guy.
In the end New York Mayor Bill de Blasio has stated that the Fearless Girl isnt going anywhere until at least March 2018. And, I think that’s a good thing. Fearless Girl isnt hurting anyone. She looks great, has a powerful message, and is bringing tourists back to the southern half of Manhattan. I hope I get to take a picture with the Fearless Girl someday. Art is awesome and this world needs more of it, not less.
We get 24 hours in a day. For most of us a quarter of that time is spent sleeping. that leaves 18 hours of productivity. We choose to fill that time with work, family, friends, maybe eating. But, lets be honest, most of us spend the majority of our time just wasting time. I do it, you do it. We all do it. Playing games, iPad, iPhone, Facebook, Twitter, Tinder, Tumblr, Fumblr. Netflix, Hulu, Amazon Prime, Amazon Not so prime (aka reading)
We waste so much of our 18 hours just wasting time. I’m not accusing. I do it too. And because we waste so much time, we often feel rushed because we feel we have so little time. Or, for some of us, looking and feeling busy is the rush we desire. I think I already wrote on this topic, maybe not, but looking busy has become a personality trait for many. I’m funny, he’s athletic, She’s always busy. (Or he’s always busy, not to judge) We rush around and we don’t have time for simple things.
I’m not talking about family, friends, watching birds and smelling flowers. Those things are cute, but the simple things I’m talking about are as follows:
1: Putting your shopping cart back in the return area. And I’m not talking about leaving it in the general area, barely touching the one in front of it, but still hanging out in the parking lot. I mean pushing it all the way down the chute and possibly even slamming it into the back of the previous one so they all lock together. It’s so tacky and annoying when I’m returning my cart and I cant even get it into the chute because everyone has just left a pile. So busy they just couldn’t give it a good shove. Who does this affect. First of all, me! Secondly the guys and girls making minimum wage fetching these carts. They should be able to hook them up in a little train and return them. Instead they spend most of their time having to push them all together. Which breaks their backs and leaves more and more shopping cart mess in the parking lot. And if you are the person who leaves your cart in the parking space next to you…. I’m coming for you!
2: Saying hello to the Walmart greeter. (This also applies to Target, Home Depot, and any other shopping center or market that employs someone usually elderly or disabled to say hello and make you feel welcome) Saying hello costs no energy and takes no time. They say hello, you say hello. Maybe smile, but its not required. Of course, I’ve lived in places where if someone says hello to you on the street, there’s a pretty good chance you are going to be leaving with less money. But, I can 99.9% assure you the Walmart greeter isn’t going to mug you or swindle you into buying them a new car. Just say hello.
3: Cleaning up the mess you made on or around your table at a restaurant. I’ve eaten with kids, and they can be messy. I’ve eaten with adults, and they can be messy. I get it. You’re having a great time eating and celebrating and throwing your bread up in the air and sometimes things will fall to the floor. But, if you are able to pick up your fork, napkin, onion ring, or 4 month old baby, that would be a great help to the servers and busboys so they don’t have to climb under the table. And if they aren’t the cleaning type so the next customer doesn’t have to step on your fork, napkin, onion ring, or 4 month old baby. It doesn’t take that much time and it’s a great help.
4: Putting clothes back on the hanger at a store. Many places employ armies whose entire job it is to put clothes away. But, you know there are other places where an hour after opening it looks like a tornado came through and knocked every article of clothing off its hanger and onto the floor or draped over the rack. It’s a disaster for the employees and future shoppers. I won’t say I’m the biggest fan of hanging up clothes, but how much time and energy does it really take to notice a shirt is the wrong size and to put it back on the hanger it came off of? This also applies to folded clothes, but I would recommend having a PhD in Foldology first.
Yes, we are busy. Some days are more rushed that others. But, if you take a little extra time to help a fellow man or woman, the world might be just a little nicer.
An always awesome post from Charis Hill about Ankylosing Spondylitis. 😃
And I don’t just mean our bodies.
Recently, during a visit to the pharmacy, I noticed someone wearing the same compression gloves I was wearing.
“Hey, nice gloves!” I held up my hands to show mine.
She responded, “I have Raynaud’s.”
I said, “I have Ankylosing Spondylitis.”
…crickets. I might has well have just ripped off my clothes.
She looked as though I’d spoken another language. For a disease that is oh-so-NOT-rare, it sure feels like it in these instances. Not only is it a difficult pair of words to pronounce, people’s initial thoughts might revolve around names of dinosaurs – Ankylosaurus Spoondywhat?
View original post 1,125 more words
Dear Fertile Friends,
To you who have never been personally touched or directly impacted by the burden of infertility, please know that I see you.
I envy the fact that you can conceive so easily, naturally, without all of the expensive and invasive tests and treatments I’ve endured for so many years. What I wouldn’t give to experience the morning sickness, the back aches, the tiredness and expanding waistline that you complain about. To know what it’s like to not only get a + on a home test, but then to actually get to see a tiny little raisin-sized being on a sonogram, to watch its heartbeat flutter on the screen, to watch and feel it grow and thrive inside of me. To feel my husband lovingly kiss my belly because of a growing baby, instead of just to comfort my bloated and bruised belly after the latest rounds of…
View original post 1,246 more words
Good post for Spoonies 🙂
Music was always a huge part of my life growing up. I was never ever up on the trends of the era. Most likely I was way behind the curve. Fridays I would come home from school to an empty house. I never questioned where my parents were, until now. Where were they on Fridays? Whatever, not important. As soon as I would get home I turned on MTV and watched the Top 20 videos of the week. (You see, kids, back in my day MTV played Music Videos) This is where I would try to get the slightest grasp of what the cool kids were listening to. A lot of Dr. Dre if I am not mistaken.
I don’t know why I told you that story. It has nothing to do with this post. Sorry.
Keep in mind, I am no music expert. I know what I like and if you disagree, that’s fine. Here is my list of…
The Top Albums of My Generation As Far As I See It.
Weezer: The Blue Album (1994)
“Buddy Holly” was the flagship of this album. At least that is the song MTV played to no end. But, I can’t remember an album before this that brought so much enjoyment. It was loud, upbeat, and covered topics that were way over my 6th grade head. But, I had the cassette tape and I wore the thing out in my Sony Walkman riding the bus for field trips and Football games. I’ll pull it up on Spotify today and it still brings all the power and glory of 21 years ago.
Weezer: The Green Album (2001)
No, this list is not going to be a tribute to Weezer. They are just an unstoppable band when it comes to putting out memorable albums. Personally we are taking a jump from 6th grade to College Freshman. Completely different person listening to this music, but again, it played a part in my history. The Blue Album was the soundtrack of middle school field trips and The Green Album was the soundtrack of late night beer fests with the Cross Country team. “Simple Pages” being the track I always remember. “Photograph” with it’s loud screeching in the beginning that was just a little too loud when I played it on the College Radio Station. And, “Island In The Sun” which I never ever liked, but couldn’t argue that it didn’t fit in with the album as a whole.
Dave Matthews Band: Under The Table And Dreaming (1994)
No, I will not bow down to the establishment that Dave Matthews sucks! This has never been the case, and in my opinion, never will be the case. When you talk about the most influential albums for those who attended high school in the 90’s this album has to come up. Under The Table And Dreaming was a break from the razor blade depressing grunge of the early 90’s. (not that there is anything wrong with Nirvana, STP, and Alice In Chains) But I think America’s youth needed a change to more uplifting music that didn’t make you want to stop showering. Dave was the cool younger uncle to the Grateful Dead grandfather of the Jam Band Family. “What Would You Say”, “Satellite”, “The Best of What’s Around”, “Ants Marching”, and eight other tracks just as memorable. The songs were good and it was the first CD I had that I could put on repeat and listen to over and over for a whole weekend and never want to stop. It planted a seed that made Dave Matthews one of the top Summer concert ticket must haves for decades after.
Blues Traveler: four (1994)
This album was released just two weeks before the previous album. Same style of music but completely different. While not as much of a juggernaut as Under The Table And Dreaming, four could hold its own. “Run-Around” and “Hook” were the only singles from the album that gained any real popularity. But the popularity they found was grand. If your city’s Top 40 station wasn’t playing “What Would You Say” they were paying ‘Run-Around”. And interestingly Blues Traveler front-man John Popper played harmonica on both those songs. The band was never as big as Dave Matthews, but the two of them formed a symbiotic relationship that gave them both strength and stability in the mid 90’s. And who didn’t have a poster of the album cover hanging in their room?
This list will be continued in the very near future. But be sure to tune in. Same Bat Time, Same Bat Channel
If there is one lesson I would love to teach everyone I come in contact with it is this:
I know, you have heard that phrase a million times. So often it has lost all its meaning.
You think “Of course I’m going to be myself! Who else would I be?”
But, you know, that simple phrase carries so much more than the literal meaning. It means not hiding your true feelings, wants, desires, thoughts, and beliefs. It means not changing your image, pretending to be something else, liking something, loving something, doing something, being something.
The pressure to conform is one of the most powerful forces in nature. If you go along with the crowd you will be protected. This is true for everyone and everything on Earth. A pack of gazelles run through the African plains together because there is power in numbers when an hungry cheetah comes calling. And a pack of teenage girls hang together because it keeps one of them from being singled out for things both good and bad. A student sits at the lunch table alone and others wonder that is wrong with him or her. They must smell, or have issues, or people hate them, etc. The flow of speculations run wild and nothing has actually been done or said. But clearly, something is wrong! Nobody thinks that maybe this solo student just wants to eat their lunch in quiet and watch the world around them.
Of course, this pack mentality carries over into the adult world as well. Humans find power in numbers. Nobody wants to be alone because it leaves them vulnerable. Ever walk into a Pub and you are the only one there? Even if you weren’t planning on socializing that night, it is freaking weird! Why is nobody else there? Are they all off doing something else? Was there some huge event going on and you weren’t invited? What will people think if they walk into the Pub and they see you sitting alone at the bar? It is safer just to leave and find some people.
Imagine going to a major sporting event and you are the only one there! The chances of that ever happening are non-existent, but imagine it. Even if it is a World Cup match or the Super Bowl and you have the best seat in the house, wouldn’t it be incredibly scary to be in that huge stadium all by yourself? Now imagine the same event with a packed house and you are the only one rooting for the other team. Like being a Red Sox fan in Yankee Stadium, or hypothetically, a Mets fan in Busch Stadium the home of the St. Louis Cardinals. Take it from me, it’s not easy. Often the easiest route becomes giving up on your loyalty to your team and doing what ever it takes to fit in. Or, heaven forbid, get beer poured over your head. Going with the pack keeps you under the radar and, although it prevents you from any kind of personal success, keeps you safe and secure.
I tend to be a bit of an extroverted introvert. If you have ever spent quality time with me you know that I can be loud, silly, funny, and controversial. (Ok.. maybe not that controversial.. I’m just trying to create a daring image of myself to make you think I go outside the lines) Case in point. I am a character actor. I see the need for a type of character in a room and I try to fill it. I can be the political hot head, the George Carlin “What happened to the world?” guy. The Jerry Seinfeld “Have you ever noticed?” guy. I do voices. A lot of voices! Old man, Young kid, New York Jew, Hillbilly, Harvey Fierstein, Henry Kissinger, Richard Nixon, Gollum, Judd Geizer: The Chupacabra Whisperer, etc. Whatever voice I think will get a few people to laugh, or at least myself. But none of them are me. I’m an Irish kid in his early 30’s who has watched a lot of TV and movies. And these characters are a cloak to hide the real me. I like peace and quiet. Just me, my thoughts, and the voices in my head (all nice, no worries). I am shy and always have been. I don’t make a lot of small talk and rarely speak without being spoken to. People freak me out! Ok, maybe not “Freak me out” but I fit right into radio because I could speak to millions (statistics pending) without actually speaking to anyone. I could play a character and not worry about any immediate judgement. Even when I am performing to a group of people, I turn off my eyes and just speak into the distance. The moral of the story is, if I let my true character out into public everyone would wonder about that weird kid sitting alone in the corner. And that, my friends, is something I would like to avoid.
I began writing this article on April 20th. Or as some people know it 4/20: International Cannabis Day. The day to go smoke a lot of Marijuana because some Twitter post told you to. I did some market research that day in Wal-Mart and Subway and I couldn’t help notice that people were walking and talking just a bit slower and more subs were being ordered than on the day the US Navy spends their tax dollars. It was clear that enough people in this country were participating, but when I asked a few people (Online, I’d never talk to strangers in real life) about why 4/20 is the day to smoke Pot, nobody could actually give me an answer. I wont take the time to explain the reason here because, quite frankly, I find it almost as comical as the celebration, but look it up online if you are interested. My point is, tens of thousands of Americans chose to get baked on April 20th because they wanted to fit in (and other reasons, I’m sure). If it were really about enjoying smoking Marijuana, then wouldn’t they just do it anyway? Why did so many people choose the day when they knew thousands of other people would be doing it too? Pack mentality and fitting in. Safety in numbers.
I have written my views on why we feel the need to fit in and the importance of staying with a group. Now, what can be done about it? I’m not saying finding people with similar interests isn’t a positive activity. It is a fantastic idea! That is, unless the group you are trying to fit into is not the group where you belong.
I was a jock at heart, I just lacked a lot of the physical ability to be one on the outside. I played Football (poorly), Hockey (poorly), and Baseball (extremely poorly). I was Captain of the Cross Country team and was quite a good runner, but because of my physical limitations due to my Ankylosing Spondylitis, I was never as good as I could have been. But, that was okay because I still enjoyed doing the best I could do. The person I was not was the party animal. I would go to loud obnoxious parties in college and I would put on a good face, but I hated it! I never ever felt comfortable in a mass of people and loud music. The corner table at the Pub with my friends and a glass of Guinness or Stone IPA was more my comfort zone. Eventually I became true to myself and if going to a loud party was the only way I could socialize, then I just didn’t socialize that night. It wasn’t worth the discomfort.
I would encourage anyone who reads this to evaluate where they truly feel at home. If you are quiet, then don’t pretend to be loud. If you are a reader, then don’t pretend to be a Reality TV fan. If you are gay, then don’t pretend to be straight. If you want to be in the musical then audition for the musical. Don’t worry about what other people might say. Be the person you want to be! If you want to test your limits, then by all means test away. If you like it, great! If not, you will have a comfortable place and identity to call home.
I don’t claim to have all the answers. I don’t even pretend to. I don’t even think having a PhD in Psychology means you have all the answers. Is this blog post a cover-up of who I really am? Probably. But, maybe not. I’m just trying on the costume of someone who writes these kinds of things. Maybe I want people to read this and think I am intelligent and insightful. It’s human nature to hide your true self. I don’t think anyone can go a whole day without tweaking a personality trait or interest a bit to impress someone, or at least fit in. But, I think it’s worth a try.
“Pretending to be someone else is exhausting” – Anonymous (Or, maybe I made up this quote to make people think I’m the kinda guy that likes quotes)