I am very excited to be heading off to L.A. this week for the American Idol Finale show. This will be our fourth year attending, and we are so excited. Again this year, we will hand out info on RSD/chronic pain, wear our POPF t-shirts and spread awareness to the thousands of people we come in contact with over the 4 days. We will be sure to post pictures on my FB page and fill you all in on the great experience once again. I love American Idol, and I love being a advocate for pain issues, so bringing them together is an awesome experience that does a lot of good for patients, caregivers, their families and public. I love to be in situations where I am talking to new people and sharing awareness to people who would not normally hear about the challenges of living with pain, it is those people who we need to spread the word to others who don’t know about it, and so on. This is one of those situations! Project: Let the Public Know! Who do you share the facts of chronic pain with?
I love social media. It is a way to reach thousands of people (or more) at one time. I use it to share my life challenges and triumphs, tips on coping with pain, information relating to things I care about, and maintain hope that the information can inspire others to be their own best advocate and get better healthcare for themselves. I keep being reminded that all you can do is try your best to help others. What I needed more reminding of is that some people don’t want help, they are drama queens, or they want someone else to do the work for them. There comes a time when you have to realize that you cant help everyone. Spending your time and energy on people who suck energy from you can be draining, so spend it on those who want help. I have found that there are people out in the cyber universe that like to cause drama, just as some of us have in our personal life.
Social media outlets such as Facebook, twitter, linked in, tumbler, blogs, ect… are great because you can get a message out, but they can also tear someone down, unintentionally. From years of being on teams and coaching, I know that typically issues like this are due to a lack of communication. There may be one person who has a bad intent or it may start accidentally, but the rest are just trusting what their friend says not knowing who or where the source of information started. Everyone is thinking that they are right, or that their actions are justified and often times the person who the misinformation is about doesn’t even know what is being said or that there is an issue.
Being connected to almost 8000 people through my social media accounts helps me raise awareness, have a strong support system, and keep me in the loop of so many people. However, if people don’t read the actual messages and only rely on “I like my friend, she/he wouldn’t pass on miss information”, it can cause major challenge in getting corrected/accurate information. In this situation, everyone feels that they are in the right, until they get called out on it. Many people who write a statement on social media about another person, be it for 1) attention, 2) guilt, 3) jealousy, 4) intentional harm, 5) manipulation. Many are then called on it, they backpettle, and say it is not my fault, I was misinformed. If I am misinformed and state something that is later proven untrue, I let others know I messed up, I don’t blame the person who provided me with the facts, as if I wanted the false information to be true. As users of social media, do we have an obligation to check the source facts before sending information on, we should be able to trust, but with millions using online media . We see someone post “so and so has died”, and they share it, and they share it and pretty soon everyone is thinking something horrible happened, and then later that day on the news, we see the very person who “died” alive and well being interviewed about their upcoming project.
I am watching a situation unfold right now in social media, on a “regular people” status, where I am connected to both sides. One person had stated miss information about another person. This 2nd person tried to clear it up, but the first person posted it in a room where hundreds of people can see it and share it. The issue gets resolved, mostly behind the scenes and the origional post comes down. But the people who didnt see the resolution believe the origional post/ shared information, and dont read further to see it is resolved, and then it is taken down so they will probably never see the resolution, and they form an opinion.
My tips on stopping/slowing down the miss information in social media.
- Before sending out information, do the best to check the accuracy. ie: read the article, information, message, book or watch the show, video, or webcast, or just ask the person it is about before sending the information out.
- So many people in my life will read a headline, which is bold and intriguing and send something on. Or they read parts of a post and comment, when the question has already been addressed and resolved in a sub-comment. This mistake causes confusion and can cause friendships to break up.
- Erase posts that are found to be misinformation (including the sub-posts) and add a new comment to the page about what the facts show.
- ie: “Tuci had her dog put down because she didn’t want the hassle of taking care of it any-longer, how horrible is she! I cant stand people like this”. Once enlighten to the actual truth, changed to include the truth: “I heard Tuci had to put down her dog because it has terminal cancer and she didn’t want it to suffer the last days of its life, that is such a sad situation, I am sending prayers”.
- This clears up the miss information because the original post is erased, and puts the correct information out, without putting blame on whomever got the information wrong in the first place.
- If you are giving information from a friend who backs it with “documented research” but you don’t read it, your perception can be altered and you believe the worst in a situation, all because of your friends reaction and the innate trust we have in our “friends”. Had you read the document in the first place, you could of seen that the information was not being interpreted or read correctly and stopped the misinformation right there.
- Typically you can find out if it was meant to cause damage or harm by the persons reaction.
- If they have to go lick their wounds and instead of just saying “oh, I am sorry for the mistake”, and then they start telling other people that they were hurt, verses the person/people who the misinformation was about, you can tell they are feeling guilty and don’t want the person to be shown in a good light. They wanted the misinformation to be true and/or jealous of the person.
- When a person goes to someone quietly and explain the truth to them, and they say they don’t play those games, and immediately call someone else and bring them in on the situation, and all the ex plainer did was point out the truth, there is guilty feelings or denial involved.
- If they call or write the person and say I am so sorry, I should of done my own research/ read the document, this person is the one who is 1) learning a lesson about social life, 2) actually sorry that they passed on misinformation, 3) a good person.
- A piece advise for the person who was enlightened as to the truth. It was not to attack you, it was to get the correct information out so everyone can be on the same page, and bad feelings don’t erupt and spread further. The person the misinformation was about was hurt by your actions, if you talk about “hating to be called out” to others, it gets worse, the same way you feel bad, imagine what you did to the person the misinformation was about. The people you tell, will then be once again spreading misinformation unknowingly, when the whole issue could of been stopped, with no one being called out in person.
- Finally, If you are the person to correct someone, do it behind the scenes with private messaging and phone calls so the people involved are not put on the spot in public. This way everyone comes out looking good and we have less drama and stress in our lives.
Over the past 39 years of my life this perpetual mistake has been made by myself and friends. Since I got involved in social media the last few years, I have come to realize that I can only control myself, and know in my heart the that truth will come out! This cant be done without communication though! The message, support, and awareness efforts being carried out all over the world because of social media outweigh the negative impact of these communication mistakes for those people who really want help and to help others.
My mom had us play the “telephone game” as children (in the girl-scouts). Through this game you learn that even with a small group of 3-4 people, one person starts the message, and it passes to the next through whispering in the person next to you’s ear. The last person says out-loud what the first person said, and it is almost never the same as the original message. And some poeple just change the message to create drama. Messages, information, etc. are altered (whether for good intent, bad intent, or unknowingly) and then passed along as something that it wasn’t ever intended to be. Looking at the social media impact, it can go a lot further now. Please be sure to communicate with others AND read/research for yourself, especially before passing on negative news. Most things can be rectified with a call or email to verify with the actual subject of the information.
The truth is the truth no matter what!
SUNDAY, MAY 13, 2012
Panic Girl: Barby Ingle
This is from an interview I did in January 2012. You can read the full article from my media page.
NEW YORK (REUTERS) — When your health insurance provider denies an
experimental treatment or a high-cost drug, how much are you willing to pay for
the care you believe you need?
Barby Ingle, a former cheerleading and dance coach at Washington University
who now lives in a Phoenix suburb, has been forced to face this question.
Her troubles began in 2002 when her car collided with another in a parking lot.
The accident was minor, but her health problems lingered. She went from doctor
to doctor; drugs, physical therapy and surgery did not help and her condition
worsened. She started to feel a burning pain in her neck and arms, her skin
began to discolor and she had trouble moving. Finally, she had to stop working.
It wasn’t until three years later that an anesthesiologist put it all together. Ingle,
now 39, had a rare progressive disease called Reflex Sympathetic Dystrophy, or
RSD. The doctor prescribed a series of procedures called radiofrequency
ablations, which were thought to help people with RSD.
I am heading out to the Cauliflower Alley Club Seminars in Vegas, there will be five major seminars, dealing with many different aspects of being a professional wrestler, are on tap for the second and third days of the annual reunion in Las Vegas, NV. If you’re a young wrestler, a promoter, a manager or a referee, you won’t want to miss them! The seminars are held in Salon D of the Nevada Ballroom, right next to the CAC’s main room on the convention floor of the Gold Coast Hotel. The Power of Pain Foundation will be on hand to distribute information on Reflex Sympathetic Dystrophy and other Neuropathy conditions. I will be also filming interviews with the wrestlers for my show Painology. Sad to be leaving Ken Taylor behind for a day, but excited to be with one of our POPF State ambassadors, Julie Johnson! It will be a good week and I am doing OK physically since my infusions. I will take it easy though, don’t plan on leaving the hotel, and not staying on the strip, so it should be restful between exhibit hall hours. So if your in Vegas Monday and need something to do? “Casino Royale” will take place at 6PM Monday April 16th in the Banquet room of the CAC Reunion. Stars appearing so far Sinn Bohdi (representing Freakshow Wrestling), WWE Diva Stacey “The Kat” Carter (representing Freakshow Wrestling), A.J. Kirsch & Martin Casaus (from WWE Tough Enough), Disco Inferno (former WCW Star), Wrestling Legend & WWE Hall Of Famer, Harley Race, WWE star, Zach Gowen, Gulf Coast Wrestlers Reunion 2012 Speedy Hatfield Referee of the Year Honoree, Morgan Dollar, plus more announced in the coming days… http://www.caulifloweralleyclub.org/2012/03/22/pro-wrestling-returns-to-the-gold-coast-april-16th/
The POPF also has the New Hampshire The 4th annual Total Woman’s Expo, for more info on that go to https://www.facebook.com/events/309896629068176/ The 4th annual Total Woman’s Expo has become a tradition in the Nashua area and caters to women aged 25-55, informing women of the goods and services meant just for them. We invite you to pause from your hectic life and come explore, relax, and renew your senses… Women from across Southern NH come to meet face-to-face with exhibitors who together, deliver a TOTAL experience of stylish and exhilarating products and services that are geared specifically towards women. From the moment one steps into the ballroom, women will have the opportunity to sample, learn and purchase an assortment of products and services. Exhibiting is given the POPF the opportunity to: Build brand recognition, RSD and Pain Issue Awareness in the Community, Target new audiences, Strengthen existing relationships, Host an auction, collect donations, Collect feedback from attendees. This event is being coordinated by Wanda Siesicki – POPF New Hampshire and Massachusetts Ambassador.
Please join the Me, Ace Young, and the Power of Pain Foundation as we cheer on the Phoenix Coyotes and “Put Pain in the Penalty Box” at the 2nd Annual Pain Awareness Night at the Rink with the POPF and Phoenix Coyotes. The POPF will be on hand to provide information on Reflex Sympathetic Dystrophy and Chronic Pain issues, target a new audience, host an auction, and collect donations. Stop by our exhibitor table and learn about pain and resources in the community.
This televised NFL Hockey event will take place with the Coyotes taking on the Blue Jackets! It will be a family event filled with excitement for the whole family, give back while having a great time at the game! 100% of proceeds raised go to fulfilling our mission through vital programs for patient, caregiver and healthcare professional education and support. We are also working to get the INvisible Project displayed and other surprises.
PHOENIX COYOTES -vs- COLUMBUS BLUE JACKETS
6:00pm – Pain Awareness Presentation & Silent Auction on main floor gate 4
6:45pm – On Ice Recognition of the POPF and National Anthem performed by ACE YOUNG on behalf of the POPF!
7:00pm – Game Begins Phoenix Coyotes vs Blue Jackets
7:30pm – Ace Young will be on concourse signing autographs at the POPF’s Community Corner table (gate 4)
6pm – postgame – Pain Resources & Information available on concourse Gate 4
Turning Pain to Power! Power of Pain Foundation Motivation For A Cure
Tickets for Pain Awareness Night at the Rink, 4/3/12
4/3/12 Coyotes vs Blue Jackets, Upper Level $15.00
4/3/12 Coyotes vs Blue Jackets, Lower Level $55.00
Get your tickets here: http://powerofpain.org/event/put-pain-in-the-penalty-box-w-popf-phoenix-coyotes
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