Personal Stories — Invisible Disabilities Association

A Tick Bite Changed My Life Forever

April 4, 2013 by SherriConnell Leave a Comment

HuffPost LIVE produced by The Huffington Post a video interview and article with Wayne Connell, the founder and president of the Invisible Disabilities Association (my hubby) and me.

The show was titled, “A Tick Bite Changed My Life Forever” and was hosted by Nancy Redd.

Holy Toledo! How cool is that! As of today, it has 117,771 views! Although I mention Lyme, the interview is really about ALL living with debilitating illness and pain, no matter what their diagnosis. Most of all, it is about helping friends and family better understand.

The Huffington Post wrote:

Sherri Connell, who suffers from Multiple Sclerosis & Lyme Disease, and her husband Wayne Connell, the Founder & President of Invisible Disabilities Association, joined HuffPost Live to tell Nancy Redd Sherri’s story of contracting her illnesses through a tick bite and how they have turned it into a positive thing by founding an organization to help those with disabilities.

“When I was fourteen I was bit by a tick but at the time I didn’t know it,” Connell told Redd. “But, I started feeling chronic pain soon after.”

“I fell in love with her and we got married in ’94. And in ’96 she coined the phrase, “Invisible disabilities,” said her husband Connell.

The show was produced by the Huffington Post with excerpts from the HuffPost Live episode from December 11, 2012 entitled, “Not Handicapped Enough.” Interviewed for this segment was Wayne, Karyn Buxman, RN, MSN and Elsa Sjunneson-Henry and was hosted by Nancy Redd. Read full story!

Watch the 3 minute show, “A Tick Bite Changed My Life Forever” below! Share it with friends, family and groups to increase awareness and send a message to the media that these are the kinds of articles people want to hear and read about!

RESOURCES

Invisible Disabilities Association

HuffPost LIVE

The Huffington Post

Not Handicapped Enough

About Sherri Connell

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue and cognitive disorders 24x7. She also has Chemical Sensitivities, which has kept her very isolated from friends and family. Sherri is not a medical professional, please seek advice from your doctor before making any changes to your healthcare or lifestyle.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, disability, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, lyme disease, multiple sclerosis, news, non-profit, outreach, pain, personal story, spreading the word, support, television, traumatic brain injury, video

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Looks Can Be Deceiving

January 6, 2013 by KatheSkinner 2 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and IDA Executive Board Member, Kathe Skinner, LMFT

Why believe? Why believe someone is ill and in pain when their appearance and circumstances may indicate otherwise? Perhaps their body is crying out in pain, the brain fog comes and goes and they alternate between moments of brilliance and a loss for words. How can we determine the extent of someone’s injuries and illness just by looking at them?

The reason the Invisible Disabilities Association (IDA) was founded is for this exact purpose – to help those with invisible disabilities and chronic pain whose friends, family members, coworkers and perfect strangers may not “believe” that they are sick or in pain.

We BELIEVE people who live with invisible disabilities such as Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), Dyslexia, Lyme Disease, Dysautonomia, Postural Tachycardia Syndrome (POTS), Autism, Multiple Sclerosis (MS), Bipolar Disorder, Depression, Agoraphobia, Reflex Sympathetic Dystrophy (RSD), Cancer, Diabetes, Chronic Pain, Fibromyalgia, Chronic Fatigue and thousands of others. We believe them when these people tell us what they can and can’t do each day.

Sometimes we have our own ideas about how much a person with illness or disability should be able to accomplish for their condition to be “real.” Yet, how many songs, books, movies and works of art have been created by people throughout history who have experienced pain and illness? Each person with illness and pain has different symptoms and therefore has varying levels of ability and disability. It’s also important to remember that for some people, these symptoms may come and go throughout their day to day lives.

Kathe Skinner, an Invisible Disabilities Association Advisor, shares her story of belief below.

Most of us with invisible disabilities walk the line between trying not to look disabled and really BEING disabled.

While my multiple sclerosis (MS) is more visible than it used to be, I’m still a bit prickly when someone says “Here, let me do that,” as if I’m incapable of doing it for myself. Back in April, though, I wish someone had said just that.

My first day of a Palm Springs vacation was unusually hot (105 degrees), so pushing my rollator, which helps with my mobility, out to my rental car took a lot out of me. When I saw what was waiting for me – a black car with black interior that had been soaking up the California sun for several hours – I decided I needed to try to switch to a different vehicle.

I went back to the terminal where, bypassing the line (shocking for me), I rolled up to the rental counter and told the man behind it, “I have MS, so if you put me in a black car with a black interior on a hot day, you might as well sign my death warrant.”

Switching to a light-colored car was easy, but that third walk through powerful heat was hard on my body. My left foot dropped and dragged, dropped and dragged, and messages about lifting my legs didn’t coincide with the messages in my brain telling me to push with my arms. I looked like an inch worm in mid inch.

Safety was up ahead in the form of a silver car, and it wasn’t a mirage; I could see it there in the far right outfield of the parking lot (if it was Little League, nobody could’ve hit a ball that far). Like a wayfarer lost in the desert, I pushed as fast as I could, and dragged more with every yard covered until – Hallelujah and kiss the cat – I was finally there!

Imagine the moment of deliverance from need.

Then you can imagine how I felt, looking at that car and noticing it had black interior.

Here’s some trivia for you: A closed car’s interior temperature rises 30 degrees in 20 minutes – think about all the warnings you hear regarding why it’s important not to leave babies and animals in locked cars during heat waves. Combined with an outdoor temperature of 105 degrees, that car had to be at least 135 degrees inside.

Get in? No way. But did I have any choice? Nope.

Suddenly, I had a loss in cognitive and physical functioning. Talking to myself, I said, “If I fall down, I won’t be able to get up. No one will see me. I hate looking so helpless! Nobody’s fooled anymore; you don’t look or act normal. Get in the car. Do it NOW.”

I don’t remember how I got from the car to sitting on the ground once I drove back to the terminal. Or how people helped me inside where it was cooler. “Are you okay?” people asked. “No. No!” I said. “I have multiple sclerosis. I have a bad headache, and no feeling in my arms or legs except heaviness. I’m sick to my stomach, and I can’t see very well. I’m hot – so hot, so hot.” I was trying to call my husband David, but I couldn’t remember the number. I remember thinking I must have mascara and snot all over my face from crying.

Bet I didn’t look so good then.

Amazingly, no one called 911. Finally, the police came and asked (a cognitively impaired) me if I wanted to go to the hospital. For the next five hours, I cooled down in the emergency room, had my requisite 10 minutes with the doctor and waited an hour for a cab back to the terminal to complete what I’d begun that morning – renting a car.

I didn’t have any fun and yet my first day of vacation had cost over $1,600! Physically and emotionally, I paid, too. I slept for two days and endured a massive panic attack, followed by 24 hours of mania culminating in emotional immobility. Four days after I got to town, I went outside for the first time.

Here’s what I’d like to see change: that service providers’ awareness is better on several fronts. First, heat is no joke for anyone, but especially the elderly, very young and those with chronic health conditions. Next, especially in a town rich with senior tourists, there’s a need to acquire knowledge about invisible disabilities. Finally, I’d like to see a mandate to act on behalf of someone as clearly incapacitated as I was. The rental company also agrees something was missed somewhere that day.

My take away? Not to assume people know what MS does to me; to act courageously to acknowledge my limitations, especially when they don’t show; and to take care of myself instead of giving control away. It’s no one else’s job except mine to stay safe.

Remember that fine line? Should I look more disabled – get rid of the make-up, look pathetic? I admit I might occasionally stoop that low. The straighter path is to educate others about the “presto-change-o” element of invisible disability. Widening that fine line shows others that disability isn’t pathetic and doesn’t look that way, either. Feeling that way myself is a journey I haven’t yet completed.

IDA will never stop believing people like Kathe and we hope others will do the same. Our goal is not to judge the cause or extent of illness and pain, but to lend a helping hand, a listening ear and an understanding heart. Let us love first! Let us not be deceived by what we see or think we see or what we don’t see. IDA envisions a world where people living with illness, pain and disability will be INVISIBLE NO MORE! Won’t you join us, please?

This article was first published on Disability.Blog by Disability.gov. July 25, 2012.

RELATED ARTICLES:

Being Truly Thankful

But You LOOK Good! on Disability.gov

Don’t Judge by Appearances on Disability.gov

IDA Makes the “Top 10 Guest blogs of 2012″ on Disability.gov

Invisible No More!

It’s All in Your Head

Join the Expedition

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving

The Visible Invisible Disability (coming soon)

What’s So Funny About …

About Kathe Skinner

Kathe Skinner is a Marriage & Family Therapist turned Relationship Coach in private practice. She conducts Couples Retreats in fabulous places, offers webinars and holds Couples Communication Classes along the Front Range of Colorado. She and her husband David live in Colorado Springs with two hooligan cats. She has been diagnosed with multiple sclerosis for over 30 years.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, awareness, caregiver, disability, doctors and nurses, helpful tips, illness, injury, invisible disabilities, Invisible No More!, loved ones, multiple sclerosis, pain, personal story, spreading the word, support

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Join the Expedition

November 26, 2012 by Wayne Connell 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association.

Article Excerpt: See what an amazing difference IDA is making with our Annual Honor Awards Banquets. Not only is this an amazing night for attendees, but we share our videos from the evening and article about the Award Recipients to increase awareness, education and support around the world!

In recognition of National Disabilities Month, every October for the past five years, the Invisible Disabilities Association (IDA) has hosted an awards banquet in Lone Tree, Colorado. This year’s banquet will take place on October 14^th. This event allows IDA to honor amazing individuals and organizations from around the nation who are making a difference in the lives of people touched by illness, pain and disability. We also feature incredible keynote speakers such as National Speaker Hall of Fame Inductee Karyn Buxman, RN, MSN, CSP, CPAE; New York Times bestselling author Capt. Luis Carlos Montalván and New York Met’s World Series Champion Ed Hearn. This year we invite you to “Join the Expedition.”

Dictionary.com defines an expedition as, “an organized journey or voyage for a specific purpose.” Much time and planning goes into preparing for an expedition. Sometimes it requires learning a new language; sometimes it forges ahead into difficult places. An expedition often requires a map, unless the territory is unknown and uncharted. And of course lots and lots of cool equipment and tools are needed. Finally, an expedition usually requires a partner or a team to go with you, and a group back home cheering you on.

The problem with the expedition of caregiving or living daily with illness and pain is that you rarely have the opportunity to prepare or pre-plan. It just happens! IDA wants to help people to become “expedition ready” even in the midst of the journey.

IDA’s 5^th annual banquet will feature Antarctic Mike (Pierce) and his wife, Angela, as keynote speakers. Mike and Angela have been on a very long expedition. Mike is a professional speaker, executive recruiter, avid adventure athlete, world record holder and a husband. Angela Pierce is a wife, a blogger and someone who lives daily with disability and has done so most of her life. Together, they are an amazing team!

Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging, important and worthwhile expedition, that of helping Angela manage her lifetime disability. Read more of their story on Disability.Blog.

The good news is there are a group of people and organizations from around the nation who are journeying alongside people touched by illness, pain and disability. IDA will be honoring them on this great evening. IDA honorees include:

2012 Advocacy Award Honoree: Suzanne Mintz has been chosen based on her passion and advocacy as the founder of the National Family Caregivers Association. She has set the example for others by caregiving for her husband, Steven, who is living with Multiple Sclerosis. She has used her experience to inspire and advocate for other caregivers.

2012 Caregiver Award Honoree: John O’Brien has been chosen based on his passion and commitment to personally care for his wife and her journey with illness. This passion for people living with illness and pain also moved John to co-found Central Coast Senior Services, a home care agency which provides professional and compassionate caregiving.

2012 Corporate Award Honoree: Debbie Marriott Harrison has been chosen for her personal journey as a caregiver and champion of those living with invisible disabilities, including her own children. In addition, Debbie is an example for others in her role as Senior Vice President of the Marriott Corporation, a company that is leading the way with a disability-friendly atmosphere for both their guests and employees.

2012 Founders Award Honoree: Dick Layton has been chosen based on his personal involvement with IDA’s founder Wayne Connell as a mentor and as a strategic advisor to the entire IDA organization. Dick uses his passion to help others by making a difference in their lives and their organizations and therefore multiplying his impact and reach. Dick Layton is a currently a Managing Partner at Kenton Talent Management.

2012 Healthcare Award Honoree: Kermit Crawford has been chosen based on his leadership role at Walgreen’s as the President of the Pharmacy, Health and Wellness Services and Solutions and his focus on the wellbeing and health of all Americans. Kermit has led Walgreens in the development of programs and services such as the Take Care Clinics, Health Corner TV, Health Screening Tours and the Walk with Walgreens initiative.

2012 Impact Award Honoree: Jan Chambers has been chosen based on her desire and passion to positively impact people living with fibromyalgia and pain through her work as the President of the National Fibromyalgia & Chronic Pain Association.

2012 Inspiration Award Honoree: Bob Woodruff has been chosen because as a traumatic brain injury (TBI) survivor he inspires others with TBI to keep fighting and to use their challenges and triumphs to help encourage others. Bob founded the Bob Woodruff Foundation to honor and encourage veterans, as well as service men and women living with invisible disabilities. Bob is an amazing inspiration and is making a difference in the lives of others.

2012 Invisible Hero Award Honoree: Anna Bigham has been chosen based on her work as the founder and executive director of the nonprofit organization Hidden Wounds. After enduring the tragic loss of her brother, Anna has dedicated her life to serving military personnel living with invisible disabilities by bringing them hope and inspiration.

2012 Medical Award Honoree: Dr. Marshall Thomas has been chosen based on his passion to provide exceptional clinical care and research for patients living with mental health disorders through his leadership as the Executive Director of the University of Colorado’s Depression Center. Under his guidance, the Depression Center has become a recognized leader in research and treatment of depression, as well as a much needed community resource for health professionals and the public about mood disorders.

2012 Perseverance Award Honoree: Angela Pierce has been chosen based on her amazing perseverance as she lives each day with illness from childhood, ongoing long term pain and life threatening injuries caused by a major climbing accident 27 years ago. In addition, despite her circumstances, Angela shares her story, as well as her struggles and triumphs, in order to encourage others in person and through the internet.

2012 Research Award Honoree: Envoy Medical Corporation has been chosen based on its cutting edge research, and the creation of the Esteem®, an implantable, invisible, prosthetic hearing restoration device.

2012 Volunteer Award Honoree: Frances Owens has been chosen based on her lifelong, passionate volunteerism with multiple charities serving people living daily with illness and disability, as well as for those recovering from tragedy. Frances’ current work with Developmental Pathways and the HeartLight Center is inspiring. Her volunteerism with Anchor Center for the Blind, Recording for the Blind and Dyslexic, The Children’s Hospital, The Colorado Autism Society, women’s heart health and Denver Health’s Newborns in Need is an example to be followed.

In addition, check out our great expert chats on the first ever Online True Help® Disability Web Expo sponsored by Allsup, which will be held on September 27^th. Register today for this free event. Topics include:

“Be Expedition Ready – Learn about preparing for the journey of care giving” by Antarctic Mike
“Ready, Set, Thrive – Nine new rules for engaging change and managing stress” by Jeff Vankooten
“7 Realities of the Invisible Becoming Visible” by Wayne Connell, IDA Founder and President
“Communication Do’s and Don’ts for People with Disabilities” by Kathe Skinner, MA, LMFT
“Humor for Health & Well-Being” by Karyn Buxman, RN, MSN, CSP, CPAE
“Your Changing Brain – The owner’s manual to your mind” by Rick Watson

We hope you “Join the Expedition” with us this year in Denver. We believe we all need each other, and even though the journey can be difficult and lengthy, it can be endured with the help of others. IDA will continue to take the lead and provide support and guidance along the way. To register or learn more about the banquet, please go to www.JoinTheExpedition.org.

This article was first published on Disability.Blog by Disability.gov. September 19, 2012.

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

Learning the Language of Invisible Disabilities

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Wayne

Wayne is the Founder & President of the Invisible Disabilities Association (IDA). His inspiration for IDA is His wife, Sherri, who lives with Multiple Sclerosis, Lyme Disease, Neurological Chemical Intolerance, Traumatic Brain Injury and Anaphylaxis Food Allergies. Wayne is the Author of the booklet, But You LOOK Good! How to Encourage and Understand People Living with Illness and Pain. He has spoken at seminars, conferences, health fairs and banquets to create awareness, education and support. His personal experience includes that of a professional, multi-tasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities. Wayne and the IDA Executive and Advisory Teams reach out to others living with illness, pain and injury around the world. They bring encouragement and awareness about invisible disabilities to friends, family, co-workers and businesses through websites, projects, articles, pamphlets, seminars, events, videos, radio and social networks.

Filed Under: Becoming Visible, Celebrities, Invisible No More, Personal Stories Tagged With: advocate, awards, awareness, banquet, caregiver, celebrity, disability, doctors and nurses, event, fundraiser, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, loved ones, news, non-profit, outreach, pain, personal story, speaker, spreading the word, support

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Learning the Language of Invisible Disabilities

September 18, 2012 by AntarcticMike 5 Comments

By Wayne Connell, Founder & President, Invisible Disabilities Association and Antarctic Mike Pierce, IDA Ambassador.

Have you ever shared details about your chronic illness and pain and the difficulties you experience daily, and had a person say in response, “Well, but you LOOK good?” Many people have experienced this situation and heard similar phrases that seem harmless, unless you are the one who would give up “looking good” any day to have moments of feeling good.

Do you ask a friend or family member living with chronic illness or pain how they are “feeling” every time you see them or talk to them? It tends to place your loved one in a difficult spot. They either lie to you and say they are “feeling fine,” or they tell you the truth. They feel sick and in pain, day after day. How about asking them how they are “doing” instead? Maybe they are “doing” okay, even though they are in pain.

As my wife, Sherri, explains “Sometimes it’s what people say that hurts more than the illness.” Most people do not say mean things on purpose, yet the things they say can come across as uncaring to a person journeying with illness and pain. Living daily with illness, pain and disability truly is a lifelong expedition. As with any expedition, we need to learn the language of the place we will be visiting. We need to learn what to say and what not to say in order to make sure we don’t end up lost or accidentally insulting someone.

In order to address and teach this new language of invisible disabilities, I wrote a booklet called, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” It includes many ideas gleaned from my wife’s journal. It will help you to learn how to converse in your relationships with people touched by illness, pain and disability.

Invisible Disabilities Association Ambassador Mike Pierce (AKA Antarctic Mike) has learned this language of invisible disabilities. Here is his story.

“Angela and I have been married for almost 21 years. To most people, she is a very ‘normal’ looking young lady. Of course, I think she’s much prettier than average (ha ha). She drives a car, reads, has friends, is not missing any limbs, is not in a wheelchair and seems able to perform the functions of daily living, like most of us. If you were in a conversation with her or sitting next to her, you’d probably see her like any other woman her age.

Because she looks healthy, you’d likely think she was a working professional; probably a mom; someone who enjoys traveling, sports and other activities in which most people participate.

However, looks can be deceiving. You see, the truth is that Angela survived a 125 foot freefall in a rock climbing accident, breaking her bones in 168 places and requiring more than 40 surgeries. She has hepatitis C from a blood transfusion, a pituitary mass in her brain, Post Traumatic Stress Syndrome (PTSD), kidney failure, has been on dialysis and the organ transplant list and takes more medication than most households do. On the outside, Angela looks just fine.

On the inside, she’s challenged beyond description. The difficulty is that her disabilities are completely invisible, unless you see her compound fracture scars and the skin graph on her legs.

One thing I’ve learned during our 21 years together is that she has different needs and communicates about what those needs are in a very different way than I would have ever expected. During the early years of our marriage, we would fight loudly more often than I’d care to remember or admit. She would get very upset at me over things that I had not done and things I did not understand. I took those comments personally and took my shots back at her, fueling the fire further. I’ve thrown telephones, cereal boxes and other things across the room in anger. One night in a parking lot outside a bowling alley in Denver, a police officer overheard our arguing and came up to ask us if we were okay. We calmed down quickly after that.

What both of us learned after many of these arguments is that what Angela was initially upset about was not the real issue. It was something else that was related to the difficulty of living with various invisible disabilities. It was not me, anything I said or did, but what she was going through. We did not realize that we needed to grow in our ability to speak and understand a different language. I’m talking about the language of invisible disabilities.

It’s not an easy language to understand, as you have to think, be very patient, not take comments personally, listen more and not try to answer questions and solve problems immediately. Often, people with disabilities or chronic pain just want to talk in order to express themselves and let out the pressure that builds up inside them. Questions they ask, comments they make and issues that seem to bother them are not necessarily the genesis of the problem. That’s okay. I’ve learned to just let Angela get it out without me interrupting her, fixing her or commenting. This takes tremendous patience and self confidence on my part, as the knee jerk reaction is to take things too personally, wondering what I did or said wrong.”

The expedition will be long and tough, yet rewarding, as Mike has shared. The language will sometimes be somewhat familiar and other times very different. The best teachers of this language of invisible disabilities are those like Angela and my wife, Sherri, who live daily in the land of illness and pain. Learning the language is the first step to becoming expedition ready. Join the expedition!

This article was first published on Disability.Blog by Disability.gov. March 14, 2012.

MEET ANTARCTIC MIKE AND ANGELA! Don’t miss Antarctic Mike and Angela at the 2012 IDA Honor Awards Banquet on October 14th! They will be sharing their story and key things they have learned – For him as a caregiver, for her as a survivor and for them as a couple. Come join us! Be inspired! Be encouraged!

MORE INFORMATION:

2012 IDA Honor Awards Banquet with Keynote Speakers, Antarctic Mike and Angela Pierce

Antarctic Mike’s Website

Antarctic Mike, IDA Ambassador

Angela Pierce’s Blogs on IDA

Angela Pierce’s Website – Falling Off the Mountain

RELATED ARTICLES:

Invisible No More!

It’s All in Your Head

But You LOOK Good! on Disability.gov

Looks Can Be Deceiving on Disability.gov

What’s So Funny About on Disability.gov

About Mike Pierce

Antarctic Mike (Mike Pierce) is a professional speaker, managing partner in a recruiting company, an avid adventure athlete, and a husband to Angela, who lives daily with disability due to a rock climbing accident. Mike has completed marathons in some of the world’s coldest climates including the Canadian Arctic, Siberia and twice in the Antarctic. He has set world records in endurance swimming and cycling as well. Adventure sports have changed Mike’s life in many ways, including teaching him the importance of being mentally focused and conditioned to run the most challenging and important marathon, that of helping Angela manage her lifetime disability.

Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, but you look good, caregiver, disability, helpful tips, illness, injury, inspiration, invisible disabilities, Invisible No More!, kidney disease, language of inviisble disabilities, loved ones, marriage, pain, personal story, ptsd, speaker, spreading the word, support, traumatic brain injury

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Invisible No More: Leeza Gandley

June 4, 2012 by admin 1 Comment

Through the project, Invisible No More! the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Leeza Gandley who lives with Dysautonomia, CFIDS and other complications. Leeza was a student of Pharmacy (Pharm D. Program) and Medicine (M.D. Program) before she became sick and had to leave school before completing her studies. Leeza shared, “Now I utilize that knowledge in navigating the healthcare system — not only for myself, but also as a Patient Advocate for others.” Visit Leeza’s YouTube Channel, She Who Feels.

Learn More About Invisible No More TV	Go to Invisible No More TV Channel
Join Invisible No More TV on Facebook	Submit Your Invisible No More Story
Order Invisible No More T-Shirts and More	Order Invisible No More Wristbands

About

The Invisible Disabilities Association (IDA) encourages, educates and connects people and organizations touched by illness, pain and disability around the globe. Formerly known as The Invisible Disabilities Advocate, IDA was founded in 1997 and incorporated in 2004 as a 501(c)(3) non-profit. IDA reaches out through our websites, projects, articles, pamphlets, booklet, social network, resources, videos, radio interviews, seminars, events and more! Get the word out! Share a link to our articles and pages with Google Plus, Facebook, LinkedIn, Twitter and through Email by clicking on the Share link. Leave a comment!

Filed Under: Invisible No More, Personal Stories

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‘American Idol’ Contestant, Heejun Han Loves Working with Special Needs Children

February 28, 2012 by admin 1 Comment

Screenshot from Audition Video Copyright 'American Idol'

SEE LATEST Updates and Videos Below!

Season 11 ‘American Idol’ contestant, 22 year old Heejun Han is originally from Korea and now lives in Flushing, New York. Heejun said:

I was inspired to do this audition, because I work at a non-profit organization for kids with special needs. I wanted to prove to them that if you really, really want something and you really really believe in it, you can be someone” (Heejun’s Interview After His First Audition).

Later in the competition, Heejun admitted:

I had a bad depression, but the kids and the organization just pulled me out from there, so I just had to give something back to them. Without those kids I wouldn’t even have motivation to come out here and do all this kind of stuff. I’m not only doing this for myself. I could say that 100%, this is for the kids and it just makes me so happy” (Sing for Your Life – Heejun Han).

Heejun auditioned for ‘American Idol’ in Pittsburgh. Before his auditions, Heejun said about the other contestants, “I thought I was a little good, but they’re just crazy good” (Audition in Pittsburgh). Heejun sang, “How am I Supposed to Live Without You” by Michael Bolton.

He seemed a bit nervous, but delivered a very smooth and heartfelt song and the judges were absolutely impressed! Steven said, “Heejun, man, you sing great” Jennifer agreed, “You have a beautiful voice! I love you!” and Randy added, “On a serious note. I am really impressed and shocked!” Steven chimed in again with, “Ya, I think you’re really great. I think you could be an ‘American Idol.” Heejun was taken back by the comments and said, “Wow! Nobody told me that kind of stuff!” (Heejun’s Audition in Pittsburgh).

All three judges, Randy Jackson, Jennifer Lopez and Steven Tyler sent Heejun straight to Hollywood!

Heejun has a very dry and sarcastic sense of humor, talking about everything from the other contestants being so talented to how “pretty” and good looking they are. He said in Hollywood:

I got here and everyone’s SO tall, SO pretty. Even the guys are so pretty, I don’t know why. I don’t know what they eat, but they’re so good looking!

At one point, Ryan Seacrest asked him what he was sweating in the competition. Heejun answered, “Mostly water.”

Heejun seemed to sail right through Hollywood week, except for his personality clashes with country singer, Richie Law. Although the group seemed to be challenged, their performance got them all onto the next round. Again, Heejun’s dry sense of humor came out as he talked about the “cowboy” in his group. Nonetheless, he did apologize to Richie and his parents for his behavior on camera.

Heejun made it in the Top 24. During his interview he talked about how excited his mom was when he told her the news! Then Heejun added:

The greatest thing that I am worrying about is a “stereo-type” that they’re going to have towards me; like an Asian stereo-type. But I hope I can break that. And if they can just see me as a singer, not as a type of person. Don’t watch the music, but listen to the music. You know?”

Heejun, we think every person has something unique and special about them. There is only one you; embrace all you have been given and all you are!

UPDATE 3/29/12 – Sad to report that Heejun was sent home tonight. He was in the Bottom 3 with Hollie Cavanagh and Skylar Laine. We are sad to see you, go Heejun! Congratulations for making it to the Top 9, for staying true to yourself and for encouraging those around you to reach out to others!

Heejun said during his Curtain Call Interview:

The reason I started out this competition was to prove that if you truly believe in yourself you can become someone regardless of who you are. And if you do something for others, the outcome is something beyond imagination. I hope I impacted at least one person. So, go out there and help other people, because they’re not far away, they are right next to you in your neighborhood. Alright guys! Stay crazy, stay humble, stay cool, stay relaxed, stay who you are … cuz this is just the beginning. Let’s do this together again!

UPDATE 3/28/12 – After Heejun had been given lots of flack about his not “taking the competition seriously,” he came back full force. Heejun won’t stop being entertaining self, but the judges and mentors encouraged him to get serious and show what he can do. So, Heejun did just that with this very appropriate song and message, “A Song for You” by Donny Hathaway during the Top 9 performance show. The judges loved it.

UPDATE 3/22/12 – Heejun was in the Bottom 3 this week for the first time. Joining him was DeAndre Brackenstick and Erika Van Pelt. Although Erika belted out an amazing vocal and the judges loved it, she was sent home.

UPDATE 3/21/12 – The Top 10 perform. Heejun broke way out of his ballad streak and took over the stage. It was Billy Joel night and Heejun sang, “My Life.” The judges thought it was entertaining and fun, but didn’t show off his voice as they know he can sing.

UPDATE 3/15/12 – Although during the performance night, Randy pegged Heejun for being at risk for going home, Heejun was not even in the Bottom 3. Instead, Heejun made it into the coveted Top 10, allowing him to go on the American Idol tour.

UPDATE 3/14/12 – Heejun sang, “Right Here Waiting” by Richard Marx at the Top 11 show.

This show turned out to be the Top 11, because Jermaine Jones was removed from the competition for not having been forthright about his past history with four outstanding warrants from the police. According to the Huffington Post, three were for giving the police a false name (once when they responded to a fight, once from when he was riding in a car that was pulled over and another time when he was driving with a suspended license). The other was for not showing up for a court date.

UPDATE 3/8/12 – Out of the Top 13 (7 guys and 6 gals), Heejun was not in the bottom 6 (3 guys, 3 gals). He whisked right through again!

UPDATE 3/7/12 – Heejun sang, “All In Love is Fair” by Stevie Wonder for the Top 13 Performance night. Jennifer said, “I love you! I loved you from the first time you sang for me and I still love you now. ” Steven said, “Heejun! Fantastic! I love your voice, man. Somethin’ about it’s real special. Keep it up.” Randy added, “Dude! It wasn’t perfect, but it was REALLY good!”

UPDATE 3/1/12 – Heejun made it into the Top 10 by America’s votes! Joining him are Colton Dixon, Elise Testone, Hollie Cavanagh, Jermaine Jones, Jessica Sanchez, Joshua Ledet, Phillip Phillips, Shannon Magrane and Skylar Laine. Then the judges let six more kids “sing for their lives.” The judges each picked one more contestant to join the Top 10, to make a Top 13: Jeremy Rosado, Erika Van Pelt and Deandre Brackensick.

UPDATE 2/28/12 – Heejun sang, “I’m Loving Angels Instead” by Jessica Simpson. Heejun did a great job! The judges agreed, but commented that the song didn’t show off all of his capabilities. As promised, an additional male vocalist was added to the round. Formerly disqualified, Jermaine Jones was asked to return for another chance. On Wednesday, the Top 12 girls will have a chance to sing. On Thursday, the Top 25 (previously the Top 24) will be narrowed down to the Top 12. Ten will be chosen by America’s votes and two by the judges.

UPDATE 2/23/12 – Heejun sails into the Top 24 with his rendition of “New York State of Mind” by Billy Joel.

Also going into the Semi-Finals are Aaron Marcellus, Adam Brock, Baylie Brown, Brielle Von Hugel, Chase Likens, Chelsea Sorrell, Colton Dixon, Creighton Fraker, Deandre Brackensick, Eben Franckewitz, Elise Teston, Erika Van Pelt, Haley Johnsen, Hallie Day, Hollie Cavanagh, Jen Hirsh, Jeremy Rosado, Jessica Sanchez, Joshua Ledet, Phillip Phillips, Reed Grimm, Shannon Magrane, Skylar Laine. On Tuesday February 28th, they will be announcing a Surprise Save, as they add another boy into the Semi-Finals who was previously sent home.

UPDATE 2/16/12 – Heejun moved on to the next rounds as the contestants went from 70 to 42.

UPDATE 2/15/12 – Heejun survived Hollywood week and moved on to Las Vegas!

UPDATE 2/15/12 – Heejun made it through group rounds! 97 other contestants joined him, including Jennifer Malsh, Cari Quoyeser, Reed Grimm, Nick Boddingtom, Creighton Fraker, Aaron Marcellus, Jen Hirsh, Shannon Magrane, Joshua Ledet, Brielle Von Hugel, Amber Holcomb, Mathenee Treco, Ariel Sprague, Eben Franckewitz, David Leathers, Jr., Jeremy Rosado, Gabi Carrubba, Johnny Keyser, Heejun Han, Jairon Jackson, Richie Law, Phillip Phillips, Colton Dixon, Adam Brock, Skylar Laine and many more.

VIDEOS:

Heejun’s Farewell Message

Heejun sings, “A Song for You” by Donny Hathaway during the Top 9 performance show

Heejun in the Top 10 Singing, “My Life” by Billy Joel.

Heejun in the Top 11 Singing, “Right Here Waiting” by Richard Marx.

Heejun Han in 60 Seconds

Heejun Singing “All In Love is Fair” by Stevie Wonder During the Top 13 Performance Show

Top 13 Group Singing “As” by Stevie Wonder.

Recap of Top 13 Performance Night

Heejun’s Interview After Making it Into the Top 13

Heejun sings, “Angels” by Jessica Simpson in the Top 24

Recap of Top 12 Guys, Plus the Surprise Addition of Jermaine.

Heejun Han Interview After Being Selected for the Top 24.

Heejun’s Interview and Solo in Las Vegas, Before the Top 24 was Announced. Heejun sang, “New York State of Mind” by Billy Joel.

Las Vegas Round – “I Only Have Have Eyes for You” by The Flamingos. Neco Starr, Jairon Jackson, Heejun Han and Phillip Phillips.

MIT aka “Most International Team” Group Night in Hollywood Singing, “Broken Strings” by James Morrison. Richie Law, Jairon Jackson, Heejun Han and Phillip Phillips.

Recap of Hollywood Week – Group Night

Hollywood Week – Round 1

Hollywood Week – Moments That Make You Smile

Heejun’s Interview After His First Audition.

Heejun’s Audition in Pittsburgh. A Must See!

Recap of Pittsburgh Auditions

ARTICLE RESOURCES:

Quotes from Videos Posted on This Page.

Photo: Screenshot from ‘American Idol’ Audition Video. Copyright ‘American Idol.’

American Idol Official Website

ADDITIONAL RESOURCES:

Heejun Han’s Facebook Page

MilAl Mission in New York

ADDITIONAL STORIES on IDA:

Shelby Tweten, Teen with Bipolar on ‘American Idol.’

Living with Asperger’s and Tourette’s: James Durbin Contestant on ‘American Idol.’

Living with TBI: ‘American Idol’ Contestant, Chris Medina, Stands by Fiance

About

Filed Under: Celebrities, Invisible No More, Personal Stories Tagged With: american idol, caregiver, heejun han, inspiration, jennifer lopez, learning disabilities, news, personal story, randy jackson, ryan seacrest, steven tyler, television, video

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Doctor’s Perspective Changes When She Gets Cancer

February 23, 2012 by admin 1 Comment

As a Molecular Geneticist and Oncologist, Jennifer Kelly, MD was quite familiar with Cancer patients and treatments.

Still, she was surprised to find herself responding in some of the same ways that her patients have. Most of all, she realized that she was no longer the doctor, but the patient.

Dr. Kelly wrote:

While I am still battling cancer and have not yet returned to work nor am I leading a normal life, my illness has changed me profoundly as a physician. No amount of doctoring can prepare you for being a patient. During the past year, I have endured multiple treatment methods, metastasis, and most recently the discovery of a brain tumor that threatens my eyesight. The past year has been full of the most vulnerable moments in my life.

If anything, it’s that recognition of vulnerability as well as expertise that makes me a better doctor today (medpageTODAY’s KevingMD.com).

Read full story.

ARTICLE RESOURCE

A diagnosis of stomach cancer profoundly changes an oncologist. Jennifer Kelly, MD, PHD. medpageTODAY’s KevinMD.com. February 2012.

Stock Photo. Dr. Kelly not in picture.

About

Filed Under: Invisible No More, Personal Stories Tagged With: awareness, cancer, disability, doctors and nurses, illness, inspiration, invisible disabilities, personal story

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Invisible No More: Suzanne Stewart

February 16, 2012 by admin 3 Comments

This video features the story of Suzanne Stewart, who lives with RSD / CRPS, Traumatic Brain Injury and other complications after a car accident. Suzanne used to be an Interpreter for the Deaf. She is a Chemo-Angel and makes awareness jewelry when she is able. She has written a book that has not yet been published, “Butterfly Tears: A Journey from Darkness Into Life” and keeps a blog, You ‘N Me and a Cuppa Tea.

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Filed Under: Invisible No More, Personal Stories Tagged With: accident, awareness, Dysautonomia, illness, injury, invisible disabilities, Invisible No More!, RSD, Traumatic Brain Injury (TBI)

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Invisible No More: Sarah Friedner

February 6, 2012 by admin 1 Comment

This video features the story of Sarah Friedner, who lives with POTS, NCS, Endometriosis and Mastocytosis. Sarah is a mom of two young children and she reaches out to others living with POTS and chronic illness through her YouTube Channel, A Mom’s Journey with POTS.

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Filed Under: Invisible No More, Personal Stories Tagged With: awareness, disability, illness, invisible disabilities, Invisible No More!, parenting, personal story, POTS, video

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Shelby Tweten, Teen with Bipolar on ‘American Idol’

January 26, 2012 by admin 1 Comment

Photo courtesy of Shelby Tweten Facebook Page

Latest Updates and Videos of Shelby!

17 year old, Shelby Tweten from North Mankato, Minnesota auditioned for ‘American Idol’ in Denver, Colorado. Shelby and several of the contestants from Denver were invited to travel and stay in Aspen, Colorado for the round of auditions that were recorded for television.

Shelby was also chosen to have a back-story about her life to be presented during the airing of the auditions on January 25th.

In this video package, Shelby and her mom share a little bit about Shelby’s challenging journey. Just last year, Shelby was diagnosed with bipolar disorder. However, she says she has battled depression since the fourth grade.

Shelby said,

“American Idol’ has given me a reason to stay on my meds.” Shelby continued, “I wasn’t focusing on staying with them, cuz I really didn’t care. When I’m off my meds, I’m incoherent and I’m not myself.” Her mom added, “She doesn’t have the light in her.”

Shelby opened up with,

“There’s been times when I’ve had hypo-manic episodes. I’ll be shaking, I will stutter, I can’t control my body and my mom will be like, ‘Well, let’s sing together!’ And I’ll sing and it really helps!”

After Shelby’s audition, all three judges, Randy Jackson, Jennifer Lopez and Steven Tyler agreed to send her to Hollywood for the next rounds!

UPDATE 2/23/12 – See more news on the Top 24! Click here: ‘American Idol’ Contestant, Heejun Han Loves Working with Special Needs Children

UPDATE 2/23/2012 – Shelby did not make it into the Top 24. We are sad to see you go home, Shelby! But we are proud of you! Keep singing and go back next year!

The Top 24 going into the Semi-Finals are Aaron Marcellus, Adam Brock, Baylie Brown, Brielle Von Hugel, Case Likens, Chelsea Sorrell, Colton Dixon, Creighton Fraker, Deandre Brackensick, Eben Franckewitz, Elise Teston, Erika Van Pelt, Haley Johnsen, Hallie Day, Heejun Han, Hollie Cavanagh, Jen Hirsh, Jeremy Rosado, Jessica Sanchez, Joshua Ledet, Phillip Phillips, Reed Grimm, Shannon Magrane, Skylar Laine.

On Tuesday February 28th, they will be announcing a Surprise Save, as they add another boy into the Semi-Finals who was previously sent home.

UPDATE 2/16/12 – Shelby moved on to the next rounds as the contestants went from 70 to 42.

UPDATE 2/15/12 – Shelby survives Hollywood week and moved on to Las Vegas!

UPDATE 2/15/12 – Shelby made it through group rounds!

97 other contestants joined her, including Jennifer Malsh, Cari Quoyeser, Reed Grimm, Nick Boddingtom, Creighton Fraker, Aaron Marcellus, Jen Hirsh, Shannon Magrane, Joshua Ledet, Brielle Von Hugel, Amber Holcomb, Mathenee Treco, Ariel Sprague, Eben Franckewitz, David Leathers, Jr., Jeremy Rosado, Gabi Carrubba, Johnny Keyser, Heejun Han, Jairon Jackson, Richie Law, Phillip Phillips, Colton Dixon, Adam Brock, Skylar Laine and many more.

VIDEOS:

Shelby with her group singing, Great Balls of Fire in Las Vegas

Recap of Hollywood Week – Group Night

Hollywood Week – Round 1

Shelby’s Audition in Aspen, CO and back-story package about her.

‘American Idol’ Aspen Auditions – ‘American Idol’

ARTICLE RESOURCES:

‘American Idol’ Official Website

Photo Courtesy of Shelby Tweten Facebook Page

ADDITIONAL RESOURCES:

Bipolar Disorder Does Not Define Shelby Tweten on ‘American Idol.’ Video from MTV.com

Shelby Tweten – “Temporary Home” – Idol2012TV

ADDITIONAL STORIES on IDA:

‘American Idol’ Contestant, Heejun Han Loves Working with Special Needs Children

Shelby Tweten, Teen with Bipolar on ‘American Idol.’

Living with Asperger’s and Tourette’s: James Durbin Contestant on ‘American Idol.’

Living with TBI: ‘American Idol’ Contestant, Chris Medina, Stands by Fiance

About

Filed Under: Celebrities, Invisible No More, Personal Stories Tagged With: american idol, awareness, behavioral disorders, bipolar disorder, celebrity, depression, disability, illness, inspiration, invisible disabilities, Invisible No More!, jennifer lopez, news, personal story, randy jackson, ryan seacrest, singer, spreading the word, steven tyler, video

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Tim Tebow Makes a Difference for Youth Living with Illness and Injury

January 17, 2012 by admin 6 Comments

Screenshot of CBS Sports Interview, A different side of Tim Tebow with James Brown

Tim Tebow, quarterback for the Denver Broncos, has been a hot topic in the media for the past few months, otherwise known as “Tebow-Mania.” People are talking about both his skills and future as a quarterback, as well as his faith that he has never tried to hide. It seems that with all the fanfare, some people are really crazy about him and some people are really not.

All of that aside, we would like to talk about Tebow’s heart to reach out to kids through his organization the Tim Tebow Foundation which strives to “… inspire and make a difference in peoples lives throughout the world.” The foundation focuses on youth “…needing a brighter day in their darkest hour of need” (Tim Tebow Foundation).

Tebow isn’t a stranger to giving his time to children, as he has been a part of several charities and organizations since college. He also volunteers for the Daniel Graham Foundation, founded by former Bronco, Daniel Graham. Recently, through Tebow’s foundation he has been inviting a young person with a serious medical condition to the Broncos game, at their expense.

Bailey Knaub’s Story:

16 year old Bailey Knaub was invited to the game against the Pittsburgh Steelers. When James Brown of NFL Today interviewed Tebow and Knaub, Bailey told him she met Tebow as a result of a letter Bailey’s cousin sent in about her story. Bailey says she has been a Tebow fan since he played in college.

Bailey was diagnosed with Wegener’s granulomatosis at the age of seven. She has had 73 surgeries in the past 10 years, including the removal of a lung. Brown asked Bailey how she has dealt with all her health struggles and she answered,

It’s been difficult, but I’ve learned to deal with it. I’ve it since I was little, so I just try to stay positive through it all. And Tim just gave me somebody to look up to and was my hero and gave me the confidence to continue on.

Tebow responded,

For me to at least be able to encourage her, just be part of her life, that’s exciting for me. …. I know she’s said that I’m her hero, but that’s not true. She really gives me inspiration. She’s my hero. Ultimately, that’s what matters at the end of the day. Being able to have a relationship with someone like Bailey and be able to try to make an impact on peoples’ lives and that’s what it’s all about for me.

Zack McLeod’s Story:

20 year old Zack McLeod sustained a Traumatic Brain Injury (TBI) while playing football his junior year of high school. Zack’s mother, Tammy said, “I just thought, ‘Zack and Tim have so much in common. I wonder if these two will ever meet?” She was referring to both Zack’s love for football and his strong faith.

Through Tebow’s foundation, Zack was invited to be Tebow’s special guest for the playoffs game in New England against the Patriots, where Zack lives in Boston. Zack had Zack and his family were elated about the opportunity to meet Tebow and his story appeared on USA Today the day before the game.

ARTICLE RESOURCES

A different side of Tim Tebow. NFL Today. CBS Sports. Playoffs Interview with James Brown. January 14, 2012

Daniel Graham Foundation

Fan with Brain Injury Gets to Attend Big Game Courtesy of Tim Tebow. CBS Denver. January 14, 2012.

Tim Tebow Foundation

Article photo screenshot of CBS Sports interview, A different side of Tim Tebow with James Brown, January 14, 2012

ADDITIONAL RESOURCES

2010 Inspiration Award – Jason Graham

Bronco Fan with Disease Recounts ‘Unreal’ Experience Meeting Tebow

Tebow: The man behind the mania

RELATED STORIES ON IDA

Actress Marlee Matlin Raises a Million Dollars for the Starkey Hearing Foundation

Actor Gary Busey Wins 40K for Brain Injury Center

Actress Candice Accola Gives Voice to Lyme Disease

Country Music Star, Clay Walker Diagnosed with MS

Former Professional Baseball Player, Ed Hearn, Battles Kidney Disease

George Clooney Battles Pain, Insomnia and Bouts of Loneliness

Hit Country Singer, Trace Adkins, Brings Awareness to Food Allergies

IDA Keynote Speaker, Luis Carlos Montalván on David Letterman

Kathy Buckley, Comedian, Actress, Motivational Speaker

Rocker Bret Michaels Lives with Type 1 Diabetes

Tim Tebow Makes a Difference for Youth Living with Illness and Injury

About

Filed Under: Celebrities, Invisible No More, Personal Stories Tagged With: advocate, awareness, Bailey Knaub, CBS, celebrity, daniel graham, daniel graham foundation, denver, denver broncos, disability, encouragement, football, illness, injury, inspiration, invisible disabilities, Invisible No More!, James Brown, NFL Today, non-profit, personal story, sports, support, Tim Tebow, Tim Tebow Foundation, Traumatic Brain Injury (TBI), USA Today, Wegener’s granulomatosis, youth, Zack McLeod

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Invisible No More: Andrea Fabry

December 5, 2011 by admin 5 Comments

This video features the story of Andrea Fabry and her family who experienced severe mold toxicity from their home. Andrea now strives to help others facing the same issues as well as those who are healthy, by sharing their journey and what they have learned. She is the author of two websites: Our Health Journey and momsAWARE.

ADDITIONAL ARTICLES

Toxic Mold Uproots Family’s Health and Home

Cleaner Indoor Air Campaign

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, author, awareness, disability, environmental illness, helpful tips, illness, injury, invisible disabilities, Invisible No More!, mold injury, multiple chemical sensitivities, personal story, video

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Invisible No More: Jodie Akers

November 21, 2011 by admin 1 Comment

This video features the story of Jodie Akers, a young lady in the United Kingdom who lives with POTS (Postural Orthostatic Tachycardia Syndrome). In the midst of her challenges, Jodie loves to encourage and educate others through her YouTube Channel and her website, POTS Awareness.

UPDATE: Jodie’s story was published in the Derby Telegraph on November 28, 2011. Jodie wants to make people aware of her life-altering and rare illness.

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, illness, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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Invisible No More: Milly

November 10, 2011 by admin Leave a Comment

This video features the story of Milly, a young lady who lives with Dysautonomia/POTS, HMS and Dysmotility. She is the author of the unpublished book, Trading Sorrows and is working on one called, New Mercies. Despite the daily challenges Milly faces, she strives to encourage and educate others through her YouTube Channel, Flyinhyy.

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, doctors and nurses, Dysautonomia, illness, inspiration, invisible disabilities, Invisible No More!, personal story, POTS, spreading the word, support, video

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Invisible No More: Teri Sluder

November 1, 2011 by admin 1 Comment

This video features the story of Teri Sluder, who lives with Myalgic Encephalomyelitis, hemialegic migraine, severe cognitive dysfunction and severe tachycardia. Teri is known as Justter on her YouTube Channel where she provides awareness and support to others.

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, disability, illness, inspiration, invisible disabilities, Invisible No More!, loved ones, myalgic encephalomyelitis, pain, personal story, spreading the word, support, tachycardia

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Invisible No More: Laurie Cohen

October 24, 2011 by admin Leave a Comment

This video features the story of Laurie Cohen, who lives with neuropathy in her pelvis, as a result of a car accident. Because Laurie is unable to sit and must stand or lie down, she calls this her “Sitting Disability.” Laurie is a volunteer DJ at her local college, KSCU Santa Clara 103.3, where she recorded a Public Service Announcement about IDA in order to create more awareness about invisible disabilities. Visit her Facebook Page.

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Filed Under: Invisible No More, Personal Stories Tagged With: awareness, disability, injury, invisible disabilities, neuropathy, pain, personal story, sitting disability

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Invisible No More: Tell Your Story

October 15, 2011 by admin 3 Comments

This campaign was launched by the Invisible Disabilities Association to bring awareness to the challenges of living with invisible disabilities, education to friends and family and support to those living with debilitating conditions.

Go on a journey with these incredible warriors and let their invisible challenges and battles, as well as determination, strength and true grit become Invisible No More!

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, campaign, disability, event, illness, injury, inspiration, invisible disabilities, Invisible No More!, non-profit, outreach, pain, personal story, project, support, video

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Invisible No More: Margaret Ferrante, MD

October 15, 2011 by admin Leave a Comment

Through the Invisible No More! Campaign, the Invisible Disabilities Association is bringing awareness, compassion and belief to millions living with debilitating conditions, shining a light on the “invisible” and making these valuable, incredible people Invisible No More!

This video features the story of Margaret Ferrante, MD, a woman who lives with injuries from a car accident and Dysautonomia. Dr. Margaret is the author of the book, No More Tears: A Physician Turned Patient Inspires Recovery. You can find Dr. Margaret on her YouTube Channel, DysautonomiaMD and on her website, DysautonomiaMD.

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, awareness, campaign, disability, doctors and nurses, Dysautonomia, illness, injury, inspiration, invisible disabilities, Invisible No More!, personal story, project, support, video

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Invisible No More: Pete Monfre

October 15, 2011 by admin 3 Comments

This video features the story of Pete Monfre, a man who lives with Crohn’s Disease. Pete is the Interim Executive Director/President of ENZoology. Enzoology Education’s mission is to inspire elementary and middle school students to seek careers in science, technology, engineering and mathematics (STEM) fields.

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: awareness, campaign, crohn's disease, disability, illness, injury, inspiration, invisible disabilities, Invisible No More!, pain, personal story, project, support, video

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DJ with Invisible Disability Educates Community About IDA

September 1, 2011 by admin 7 Comments

Several weeks ago, the Invisible Disabilities Association (IDA) was contacted by a young lady, Laurie Cohen, who is a DJ for a college radio station. She wanted to do a PSA (Public Service Announcement) to spread more awareness about debilitating illness and pain and the outreach of IDA.

After connecting with Laurie, we knew we wanted to tell her story. Laurie, 31, has neuropathy in her pelvis. She has been suffering from this permanent condition for 3 years, after she was rear ended in a car accident. She has severe neuropathic pain as well as loss of sensation in her pelvis. The severe pelvic pain prevents her from being able to sit.

Laurie said, “I have a ‘sitting disability;’ I can only lay down or stand up. This disability effects every aspect of my life.”

Here are just a few examples: Laurie has to stand up to get her hair cut, she lays down or stands up to eat meals, she stands up at the movie theater (she recently stood for two hours to see the new Harry Potter film).

Laurie shared. “It is a very tiresome disability and the worst part is that I ‘look’ completely normal so people either don’t understand or think I’m lying when I explain my disability.”

Last spring (2011), Laurie became a community volunteer for her local college radio station, KSCU Santa Clara 103.3 FM – The Underground Sound. According to Laurie, this is one of the only college radio stations that accepts DJ’s who are not students. She does a 1 hour radio show Friday evenings, which she considers a very enjoyable hobby.

Laurie commented, “My other chronic condition is major depression, so as you can imagine being a DJ is quite helpful!”

Laurie’s show is called, Fairyland and she goes by the name, “DJ Fairy.” It is a specialty radio show where she plays 1960′s “flower power” music, which she describes as “Mostly lesser known / obscure artists.” It seems that the college students and her community are thoroughly enjoying her program, because Laurie noted, “I have been getting great feedback about my radio show!”

It sounds like Laurie has really found a wonderful outlet to express her talents and music, as well as finding joy in the journey! Thank you, Laurie for spreading awareness about others living with invisible disabilities!

ARTICLE RESOURCES:

KSCU Santa Clara 103.3 FM – The Underground Sound

PSA for IDA by DJ Fairy on KSCU Santa Clara 103.3 FM

DJ Fairy on Facebook

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Filed Under: Becoming Visible, Invisible No More, Personal Stories Tagged With: advocate, audio, awareness, disability, injury, invisible disabilities, neuropathy, pain, personal story, radio, spreading the word

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Invisible No More TV

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NEW – IDA 3-LED KEYCHAIN FLASHLIGHT

Invisible No More! IDA Wristband

IDA Awareness

Just Because It’s Invisible