26
Jul

My First TEDx Talk (And How I Got It)

From a happy-go-lucky musical theatre teen, to surviving sexual abuse, a coma, six years without food or drink, and 27 surgeries, it’s been a very long, detoured journey, and it still isn’t over yet.

But what makes the journey meaningful, and ultimately rewarding, is the ability to share, and know that you can possibly help someone through their own “detours.” Something I’ve learned over time, is that a Detour is Not a Dead End – which was the title of my first TEDx Talk!

I gave my TEDx Talk this April, and finally…it’s out!

Giving the talk was a thrilling experience.  Even being such a shameless musical theatre ham that I am, this was the most nervous I’ve ever been.  Actually, I didn’t realize how nervous I was until I was done…and I started basically hyperventilating!

Follow Your Detour, Find Your Flower | Amy Oestreicher | TEDxSyracuseUniversity

At 18 years old, Amy Oestreicher had her life all figured out: go to college, star on Broadway, and conquer the world. When a blood clot literally caused her stomach to explode, Amy’s life took some unexpected “detours.”

“How do you get a TEDx Talk?”

Many people have reached out to me and have asked “what it takes” to “get” a TEDx Talk.

Amy2Something I’ve learned along the way, like everything else, and I hate to say this, but there is no “quick easy way” to get a TEDx Talk…or anything else, to be honest.  When I make up my mind I sort of take on an all or nothing mentality.   Moderation is definitely not my forte!

“Getting” a TEDx Talk took hours of googling calls for speakers for a few months, then writing a ton of essays – an application for TEDx is basically like applying for college. You have to write many well-crafted essays and it’s really not just about being a good motivational speaker with an inspiring message.

Although difficult to finally “get” a TEDx talk, it was one of the most rewarding experiences of my life.  I’ve learned, through over a decade of medical crises, that we are able to heal when we tell our stories. And that is precisely what I did.

A TEDx talk tells a story.  Like their catch phrase says, TEDx is all about “ideas worth spreading.”

Amy3Who is TED?

Ted is not a person, although I’m sure he would be a very intelligent person. TED actually stands for Technology Entertainment and Design.  TED Talks are all about ideas that are worth spreading, to better ourselves and our world.

My idea worth spreading? That someone who follows life’s unexpected detours and searches for the flowers along the way to make their journey meaningful is, in fact, a Detourist.

Detours Worth Spreading

I felt that this idea was worth spreading, simply because when I started to approach my personal journey as just a detour in life that I could navigate myself, it really made the bumpy ride ahead of me  a lot easier to manage.  Suddenly, I felt like I had control of the unexpected path.  Being a Detourist empowered me with a sense of ownership, at a time when life felt very uncertain.  (You’ll have to watch the talk to find out more!)

Amy4

So I figured it could help other people too.

Detours in life can be tough to navigate. That’s why I call myself a Detourist.

amy5

Why I’m a Detourist

My stomach exploded. (Seriously – it’s in the talk.)

My life didn’t go exactly as I planned it – but does anyone’s?

amy6A Detourist travels along detours – simple enough.  But in addition, a Detourist embraces those unexpected routes as opportunities for growth, change and self-fulfillment.  I hope to serve as living proof that a detour can lead to unexpected blessings.  Because of my Detour, I’ve learned so much about myself, my world, and the strength I never even knew I had.

Detours Keep Going…

As the nature of detours go, after I gave this talk, my life took another detour – in the shape of a very unexpected and upsetting divorce.  So although the talk has an “unfinished” ending, that is truly the nature of detours – by trusting our path, one foot in front of the other, with time, we eventually find our flower.  Sometimes, you don’t really “love” your detour. But you still can trust it.

I still feel that through sharing our own detours, even if they’re not so great in the moment, makes us all stronger. So that’s why I share. Moving forward, trusting our detours, one day at a time.

Hope you enjoy the talk, and feel free to share – the more we share our detours, the easier they are to navigate.

What is your idea worth spreading?

Watch the video here.


Amy Oestreicher B&W 2006

 

All artwork was created by Amy on her detour. Learn about her speaking, or catch her touring Gutless & Grateful, her one woman musical, to theatres, colleges, conferences and organizations nationwide.  Learn about her mental health advocacy programs for students, and find out how to take part in the #LoveMyDetour movement, and learn about her upcoming book, My Beautiful Detour at www.amyoes.com.

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22
Jul

ICYMI: July #HAChat hosted by Aaron Horton

This month we were joined by Aaron Horton, The Mesh Warrior, and engaged in a conversation about the biggest surprises and lessons learned in our health journeys.

Aaron is a mesh injury awareness health activist who is starting the important conversation about transvaginal mesh. She founded the Mesh Warrior Foundation to raise awareness for those who have been mesh-injured and to also give them a place to connect and educate.

 Make sure to follow Aaron’s advocacy on her blog, her facebook, and her twitter and read through this great discussion we had!

22
Jul

Feature Friday: Amy Ohm, CEO of Treatment Diaries

For the 43% of Americans that suffer from chronic conditions, the feeling of loneliness is nothing new. Whether it’s a new diagnosis or a pre-existing condition, patients look to Google for answers: endlessly searching for treatments, some direction and a glimpse of hope. But more often than not, patients are left feeling they are the only ones suffering with their condition. This is an experience cancer survivor, Amy Ohm, knows all too well.

Amy Exec Photo - Color[1]After her diagnosis in 2004, Amy turned to the Internet searching for hope and insight. What she needed to find was the transformed and improved outlook of a previous patient, who could reach out and say “Hey I’ve been where you are, here’s what I did…” Unfortunately, all Amy could find was daunting clinical perspectives. This encounter inspired her to create a community where people could share their experience, allowing patients to improve their personal health journey by learning from fellow patients.

Get To Know Lori-Ann HolbrookFilling this need for connection, Amy created TreatmentDiaries, an online healthcare platform that unites patients, caregivers and support systems for the private and anonymous exchange of personal health related experiences. The platform works as an interactive diary, where users can anonymously post about their health journeys, sharing their day-to-day experiences for others to read and learn from. The anonymity element provides patients the opportunity to connect with those they can relate to without disclosing their identity,
which Amy believes “…gives many the desire to share more freely and learn from those who understand the journey.”

Although TreatmentDiaries already supports users in over 100 countries and well over 2,000 conditions tied to millions of diaries, Amy continues to focus on growing the patient community. With continued growth, Amy hopes TreatmentDiaries will become “…the defacto standard in digital health for patient communities across the healthcare continuum”. It’s a big goal, but the impact an empowered patient can have on an individual just starting their health journey is even bigger!

tdIt is quite obvious TreatmentDiaries is taking the online health community by storm, but Amy admits she was nervous to start the platform. Her lack of clinical background made entering the healthcare realm pretty intimidating. She now, however, is more than grateful for the opportunity and all the relationships she has established. She advises anyone interested in becoming a health advocate to “Create a plan and follow it. Stick with it and see it through, but be open to pivoting to support the evolution of your efforts.”

Interested in TreatmentDiaries or know someone who could benefit? Check out the website today, the more patients that join, the more inspiration there is to share!

Patients have the power in this!

 


Kristen LongKristen Long, WEGO Health Activist Awards Coordinator is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen on Twitter and Facebook.

 

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15
Jul

Feature Friday: Lori-Ann Holbrook, Psoriatic Arthritis Health Activist

WEGO Health recently had the opportunity to connect with Lori-Ann Holbrook, a health activist who welcomes readers into the daily life of an active city girl with Psoriatic Arthritis.

Utilizing her blog, CityGirlFlare, and twitter (@CityGirlFlare), Lori-Ann shares her daily experiences, as well as heath tips and insights as to how she continues to lead a fun, loving life full of shopping, museums, shows and plenty of walking despite her chronic conditions.

Get To Know Lori-Ann Holbrook | WEGO Health Patient Influencer Spotlight wegohealth.comDiagnosed with both psoriasis and psoriatic arthritis in 2012, Lori-Ann was introduced to the world of Health Advocacy by a woman she met at an event. After learning of the woman’s blog about Psoriasis, Lori-Ann was inspired to create her own blog in hopes of educating and encouraging fellow patients as well as raising awareness for Psoriatic Arthritis.

Lori-Ann believes her biggest lesson has been not to hide her chronic conditions. She recognizes her conditions can be embarrassing, but reminds fellow patients within the community that “…you are in control of what they [others] think. You have the opportunity to explain to them what’s really going on. You have the opportunity to create awareness.”

And that seems to be exactly what Lori-Ann is doing. With over 2,000 followers on Twitter (and rapidly growing!), Lori-Ann offers humorous memes, informative research findings, and healing tips to continue to inspire and educate the Psoriatic Arthritis community.

The hope of CityGirlFlare is to encourage other patients to connect and share their story, but not just those with Psoriatic Arthritis. After attending a couple HealtheVoices! conferences, Lori-Ann appreciates the opportunity to learn about other bloggers and their chronic conditions. She has found health advocacy and its growing communities have created a sense of belonging for so many struggling with various chronic conditions. She reminds all patients, “The world needs you and Me. Speak up for your condition.”

Visit City Girl Flare for insights and tips on living an active life with Psoriatic Arthritis!


Kristen Long, WEGO Health Activist Awards Coordinator

Kristen Long is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen on Twitter and Facebook.

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8
Jul

All Roots Can Lead To Lupus

Do a Google search for ‘lupus support groups’ and you’ll get almost 700,000 results or more. Lupus is getting, shall I say, popular! Although lupus is gaining in stride in terms of awareness, recognition, and public alertness to the cause, there’s still many influences that go unnoticed, places that go untouched, and stories that go unheard of. Social media has helped tremendously in terms of provoking curious research and sharing useful resources, yet so many folks in our rural areas continue to struggle with identification, support, and an opportunity the be heard. As a person who lives in a state that has many rural sectors, I can identify with the need to get out to the community that can’t get to you. For instance, research shows that many people diagnosed with lupus miss much needed appointments and important medical care due to their physical location (Williams E., et.al). So how do those who really want to help their community in terms of lupus support and awareness do just that—down to the most basic form of activity—help from the root up? Grass root efforts can make an impact. Here are some suggestions on how to do more with less.

 

lupuswalkbabyWalk right into awareness. In 2013, many lupus walkers sported their walk t-shirts, balloons, jackets, hats, and other articles of clothing adorned in purple –the national color for lupus awareness. Known in its common form as Systemic Lupus Erythematosus, lupus is an autoimmune disease. According to data available from the National Lupus foundation of America Inc., out of the estimated 1.5 million Americans identified, South Carolina alone has an estimated 21,920 residents living with lupus*. Lupus is not a rare disease, yet it is sparsely known to others, and deeply felt by those afflicted. There are several forms of lupus that come with a chameleon of symptoms and ailments. It is a disease that mimics the symptoms of many other illnesses and therefore complicated to diagnose.

 

Start where you are. A small group of us started having support group meetings in our local library. Most public libraries will allow community organizations (specifically non-profit) reserve rooms and meeting space. This is the best start for those that just want to get together with others like them. I started sharing that we were having regularly scheduled meetings, once a month, at a local library and eventually our team was able to partner with the larger city organized wellness center for more exposure and attention to what was needed in the community.

 

communityLsignGo to the people. If you really want to get deep into the community, find out where lupus is hiding. Many people do not utilize social media. I know this may not be believable, but its true. To get the word out you have to get out! Get out into the community when the big family events happen. Pass out flyers at the local fairs –something is always happening annually in your hometown or other neighboring locations. If you can get there, you can get lupus noticed.

 

fleamarketlupus

 

‘Flea’ the other locations and go for somewhere different. Okay a bad pun on words, but hey, it got your attention! Lupus is everywhere and flea markets are not exempt. I had this glorious idea that we would go to the flea market and set up a table to pass out information on lupus and our support group meetings. It takes a group of volunteers, but it can be done. It’s amazing how many people will stop by to share their story and offer support.

 

 

Advocate support from the medical population. One rural strategy I was able to participate in started with a grant sponsored by the local University. An epidemiologist, Dr. Edith Williams, happened to be doing research on lupus in our state. We had the opportunity to become involved and help with the development of a South Carolina Lupus Registry. This enabled support for media exposure, brochures, and other information pieces to be distributed in areas where they usually would not have. I think this was a great start to planting ‘lupus’ roots in areas that otherwise would not have had the exposure to sharing their stories. I was always amazed at how people would feel so proud to come to the table at a local event to tell their story about who, what, when, and how someone they know was affected by lupus. It feels incredible to know that even the most basic forms of information we gathered from the surveys will be so vital in helping to make future recommendations on community lupus awareness needs.

 

It’s healthy to help others. Healthcare professionals may struggle to understand and diagnosis lupus early on. Because of this, many of those stricken by lupus-related symptoms may take three to four years to be diagnosed. No two lupus patients’ symptoms are alike. Ninety percent of those diagnosed are women, and three out of four lupus patients are of African American, Hispanic, South and Southeast Asian, and North American First Nations decent. According to a study by the National Lupus Foundation of American, more than 55% of those diagnosed with lupus have seen four or more healthcare providers before being diagnosed correctly. The multiple years that it can take to be diagnosed can be fatal, due to the lack of proper medical care and attention. At this present time, there is no cure for lupus.

Photo Credit: Angela R. Odom

For more tips and suggestions on how you can do more with less or on how you can start a support group in your area, contact J. H. Johnson at thelupusliar@gmail.com. Follow J.H. at http://www.thelupusliar.com/blog. Follow J.H. on Web/Twitter/Instagram/Facebook @TheLupusLiar

To learn more about Lupus, go to www.TheLupusLiar.com. To find out about support groups in your area, visit www.lupus.org/southcarolina.

‘Diary of a MAD Lupus Patient’ by J. H. Johnson is available online at http://www.thelupusliar.com/blog

Williams E, et al. Systemic lupus erythematosus observations of travel burden: a qualitative inquiry. Under review by Humanity & Society; 2014. [PubMed]

*”3801-Estimated Number Lupus Cases by State”, Lupus Foundation of America, 2002. Available at http://www.lupus.org.

Photo Credit: Angela R. Odom


HetlenaHeadshotHetlena has been integral in bringing lupus to the forefront of awareness in South Carolina. She founded the nonprofit, Lupus Columbia South Carolina (LCSC), to raise awareness of and advocacy for lupus patients like herself in South Carolina. A nationally renowned speaker, author, coach and professional trainer, Hetlena has presented at several conferences around the country including TEDxDenverED. She is devoted to helping others face life with an open mind, heart and spirit. For more tips and suggestions on how you can do more with less or on how you can start a support group in your area, contact Hetlena at thelupusliar@gmail.com. Learn more about Hetlena on her blog at http://www.thelupusliar.com/blog and at www.facebook.com/thelupusliar. You may also follow Hetlena on Twitter @TheLupusLiar.

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1
Jul

Breaking Through or the Art of Cause and Effect

It’s incredible that it is already July. You know what that means! Sharon Coyle-Saeed’s monthly blog post is ready for your to read! Make sure to check back on our blog every month to read another fantastic post from Sharon. Happy reading!

To read Sharon’s last post, click here!

Breaking Through or the Art of Cause and Effect

By Sharon Coyle-Saeed

 

I think I am getting closer in breaking through the key to the past five years of a compromised, low quality life. YES! It has taken me this long to even acknowledge and not deny nor disassociate from the truth.  THESE FIVE YEARS WERE AWFUL!!!!  Not a pity party nor a victim…just stating the cold, hard, facts.  From June 11, 2011 to date, I have had five major open abdominal surgeries, double digit PICC lines, TPN feedings, and for the majority of those years spent over 50% of the time as an inpatient.  I have missed too many events to count. Yes, I understand all the positive aspects of the past five years. The people I have met, the wellness journey I am on, and all of its lessons…but today, today, I scream out: #&$)*@)*)$*@)*$)*)@*)*@$*)@*)@(*#)@(*+__@(*#*@)(*#(*@N !!!!!

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In desperation, early 2013 had me with picc line, at a holistic chiropractor’s door, Dr. Harry B. Schick. His first words after I introduced my story to him in a 7 minute elevator speech that sums up my medical history since being diagnosed in 1990 was, “I am a holistic doctor. I care for your whole self. Mental, Emotional, Body and Spirit.”  I went home that day, emailed him and said, “If I wanted a psychologist, I would go to one. Work on my adhesions.”  He is the most patient doctor I have ever met to deal with me. Those that know me, know I sing his praises, not only because I have witnessed the miracles he has performed, but, well, he had to deal with my sassing back, eye rolling,  and questioning every single technique.

Since then, I became an open minded skeptic. I met the most interesting people at his office. Granola  New Hope-y Hippie Types. Of course, being a tiger mom/stepford wife at the time, I really did not think I would ever find my home in this tribe. I learned about Reiki and became a Reiki Master this past December, I go for acupuncture treatments and now getting my mastery in acupressure. Although this helped with operations and hospital visits, it still wasn’t breaking through. I still had small bowel obstructions.  These concrete adhesions sure are stubborn……but, so am I.

I changed surgeons and have had two surgeries by the head of Colorectal surgery at Columbia Presbyterian, NYC, his latest thoughts on my insides are that they are the worst case adhesions  he has ever seen  and added, “It would be very risky to go back in….ever.”  He is coming from one of the top hospitals in the country, Cleveland Clinic, so I am taking his word to heart.

Where does this leave me? I am trying to open all my chakras, let go of attachments, shamanic dreaming, Himalayan salt lamps and essential oils are my new medical kit. Why am I not breaking through? Why did I just spend the last 8 days as an inpatient?

Then, I went back to Dr. Schick’s words, yes I did stay with him(or should I say he was gracious enough to keep me as a patient and I am ever so grateful and respectful of him).  I have learned from him (lots) and as I go back to the first email I sent to him, of not wanting a therapist, to play back his words in my head, “go towards that something that makes you feel uncomfortable.”  I was getting my body together (vegetarian gluten free), my spirit feels very open and receiving, my mental was being nourished (graduate school does that to you), however, what about the IMG_2056emotional? Why was I so fighting that off?

Everything that has an effect, has a cause. I run away from anything that screams psychosomatic as with IBD (Inflammatory Bowel Disease), a serious autoimmune disease, we have heard wayyyyyy too many times, “it
is a nervous stomach,” “calm down,” “it is all stress,” and “I have IBS too.” IBS(Irritable Bowel Syndrome) is directly related to stress and diet, IBD is not. Though, I am noticing that emotional stress can wreak havoc with any underlying disease, disorder or health challenge.  Having stress? Be certain that those with high blood pressure, your levels can rise.

 

So, this is my third week with a therapist. She is an LCMSW. For the most part, I am cleared for any major DSM-V  ICD 10 codes, however, she wants to work through some of these pent up emotions especially in these past 5 years of health challenges. It is as if she is a vesselIMG_2057l. I can pour my emotions into this vessel  knowing that I can let them go into a very confidential holding environment. She is a great source of comfort and validation. She has tuned me in to triggers and patterns and coping skills to deal effectively with these. I am just wondering why have I resisted so much going before? Her sessions are just as therapeutic for me, if not more so than a Reiki session.

 

I am really hoping and praying this is the key. The final piece that was missing to creating wellness. And if I ever move to New Hope and become a granola hippy, just shoot me.

Are there any triggers in your life that you feel are disturbing your health challenge? Whether food/body trigger, emotional, mental or spiritual trigger? Would love to hear!  Hoping for more well days for everyone!


 

IMG_9124-240x300Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater.  Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from  Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.

30
Jun

Project Scleroderma’s Dear Scleroderma

Project Scleroderma is a 501(c)3 non profit organization with the primary purpose to dramatically increase the global level of awareness for a rare auto immune disease, scleroderma. After writing, filming and producing a feature length documentary film about the disease, our organization debuted “Project Scleroderma: Beneath The Surface” in 2015.

Now, in 2016, we are moving forward by producing a second wave of patient stories to be shared via social media. With this approach we are working to spark a ripple effect of awareness all around the globe with as many views and shares of these videos as possible.

Our most recent project is a documentary web series, titled “Dear Scleroderma”, which will highlight the stories of several young women who are working to raise awareness for scleroderma while simultaneously battling this awful disease. The first episode of the series features a young woman named Jessica Massengale and her social media community, “Scleroderma Strong”. Jessica is an amazing young woman, who inspires her entire community of scleroderma followers on a daily basis with her hopeful and empowering quotes, videos and insights into the disease she herself battles as well.

This episode is just the first of several episodes to be released in 2016, each with its own powerful message of hope and inspiration in the face of adversity. Our intention is to continue to educate the world about this disease, and to shed light on not only the physical toll this disease can take, but the emotional burden as well. We hope to spark compassion and understanding in our communities for the patients who suffer from this disease and to let scleroderma patients everywhere know that they are not alone.

We are working to rally a large collaborative effort to share our web series as far and wide as possible in our continued efforts to increase the global level of scleroderma awareness.

Make sure to watch this first episode:

Project Scleroderma

Today, June 29th, is World Scleroderma Day. Project Scleroderma would like to recognize this very important day by sharing the first episode in our brand new web series for awareness, called “Dear Scleroderma”. Project Scleroderma, together with New Pace Productions, is excited to share the story of Jessica and her Scleroderma Strong community!

Please join us in sharing this empowering, inspirational and educational series, and stay tuned for more to come from Project Scleroderma!


ChristyMcCaffreyHeadshotChristy McCaffrey is the Executive Director of Project Scleroderma. Project Scleroderma is a 501c3 Non Profit organization with a primary mission to dramatically increase the global level of awareness for a rare auto immune disease, scleroderma. Christy lost her mother in 2009 to this disease and was thus inspired to help create awareness. In collaboration with New Pace Productions, Project Scleroderma released a full length documentary in 2015, followed by a documentary web series in 2016.

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21
Jun

Reclamation Runway

There are 100k+ health activists in our network who spend countless hours pulling together amazing events to spread awareness, hope and raise money.

AnnMarie is one of those patient advocates out there making a difference.

The following blog post has been written by AnneMarie and depicts a gorgeous event she held to help empower women. We may not have had the pleasure of attending the event in person, but if you take a scroll through the photos that were captured it’s easy to see what the energy was in that room.

This is a perfect example of a patient impacting the lives of so many! We’re happy to highlight this wonderful event here on the blog today.

Reclamation Runway

By AnneMarie Otis

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It all started when I was DX with lymphedema and I thought this sucks.

No really wearing this ugly sleeve sucks. I feel like a patient every damn day.

I wanted to still have style so I found Lymphedivas. And behold they had everything I needed in a sleeve-style, swag, comfy and they fit my personality.

I wondered how many others knew about them. As I researched, I found more and more stylish items to make this crappy disease a little less crappy and a little more fashionista.

AnaOno has a line that is so cute who can tell it has drain holders?

I had to share this.

So I contacted Lisa Butler of Syracuse Fashion Week and she said let’s do this. A fashion show where all the models have had cancer or are dealing with it and they will be rocking items that helps them through treatment.

BRILLIANT. Now to get the community on board.

I reached out to my connections. Within days, I had models that were willing to go outside their element and reclaim the runway. To regain a little of themselves on that catwalk. They were excited, nervous and honored to be part.

One of my dear friends, Donna, was ready to strut even though her Stage 4 diagnosis had taken a turn and she was in the hospital.  Donna died one week before the show, but her spirit and energy were clearly there that day as we all felt her Bronx strong attitude.

The models needed pampering, so Lisa reached out to her team and Shannon pulled together a group of kick ass makeup and hair stylists. They all were eager to do whatever each model wanted this was about them, it was their day.

Dinosaur Bar B Que was were the show would take place and they could not wait to set the stage. The Degenerators  rocked the house before the the ladies came out and they did a killer job.

Our desserts were amazing and Half Moon Bakery and Bistro fit all taste buds with a regular, vegan and gluten free cakes!

Paparazzi lined the stage and the pictures were fabulous- Daniel Ware Photography, Ana Gil Talyor Photography, Natalia Russo Photography  .

Did I say that their services were donated!? Yes, the community believed in this so much they donated their amazing talent. And I have not even talked about what the models wore yet!

Each model walked twice and they got to keep everything, yes everything!

So the fantastic clothes that help them through treatment they do not have to give back, amazing right?

Turban Diva stunning head wraps and Bwell11 bandtanstik with their bandiva look wonderful.

Blue Canoe AnaOno Spirited Sisters-Healing Threads Radiant Wrap The Brobe all designed for surgery and treatment were showed just how adorable they are.

Red Fern Lingerie and Jamu Australia gave woman hope that there can be cute pocketed bras.

Circles of Change reminded woman that everybody is beautiful and the we are strong!

Wrapped in Love and LympheDiva gave woman the choice to look cute and be fashion forward.

Pauir Athletic and Jill’s Wish proved we are never alone together we are in this, side by side.

The show ended with a BANG. Two time cancer survivor came out with her chest painted in a black tutu. She empowered everyone that scars to not make us who we are not even for a moment.

Carmelo’s Ink City did a spectacular job with the amount of time he had!

This event gave woman hope that they can still be super cute even though they feel horrible.

NO, it will not cure cancer, but it can have them gain a little of themselves back. It brought together a fashion community to the cancer community raising money for Cancer Connects which keeps it in our town. Part of the money did go to Jill’s Wish too which helps on a national level.

It is events like this that show we can make a difference, we can take some of ourselves back from cancer and we can do it with style!

Reclamation Runway is about reclaiming yourself, regaining what cancer took away.

Finding yourself in the middle of fear, sadness and anger and turning that into power.

And that is exactly what it did.

Make sure to head over to Stupid Dumb Breast Cancer’s page to see a whole album of beautiful pictures from this event!

 


AnneMarieOtisAStupid Dumb Breast Cancer is my fierce and unconventional initiative to promote awareness and advocacy, with a special focus on how the disease impacts younger people. Bringing awareness to cancer in the late stages has become my prime focus followed by the after effects. It is time for a change. On behalf of my organization, I have been featured in area publications, appeared on TV, local radio, and Huff Post Live, and hosts a series of monthly events. Since its inception almost in 2012, Stupid Dumb Breast Cancer has raised and contributed over $270,000 to a variety of breast cancer organizations, including Stand Up to Cancer, Duke Hospital, Wilmot Cancer Center, the Upstate Cancer Center, Cancer Connects, and the Maureen’s Hope Foundation. I am currently serving as Community manager for wisdo.com and social media coordinator at LyfeBulb.

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13
Jun

ICYMI: June #HAChat Sharing Our Journeys & Information Online

This month we were joined by Birthday boy Shakir Cannon and engaged in a conversation about sharing your health journeys and information online.

Shakir is a sickle cell health activist who is making huge waves across the patient community. He represents patients at conferences (like ePharma Summit 2016), shares his journey through his social media channels and co-founded the Minority Coalition for Precision Medicine (MCPM) to which he’s taken his advocacy to the White House for the Precision Medicine Initiative.

Make sure to follow Shakir’s advocacy on his blog, his facebook and his twitter and read through this great discussion we had!

 

Make sure to join us for our next #HAChat on July 5th, 2016!


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Julie Cerrone is the Patient Influencer Network Director at WEGO Health. Working with WEGO Health as a Patient Influencer prior to joining the WEGO Health team, Julie wakes up everyday motivated to help raise the patient voice. Follow Julie on Twitter, Facebook and on her personal blog.

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Jun

War, What is it Good For? Absolutely Nothing, or Perhaps Something?

Sharon Coyle Saeed’s monthly blog post is up and ready for you to read! In this post Sharon discusses her recent surgery that was anything but simple. WEGO Health is so pleased to report that Sharon is now home and recovering.

Dive into Sharon’s world by reading her post below.  If you’re looking for her previous post, click here.

War, What is it Good For? Absolutely Nothing, or Perhaps Something?

By Sharon Coyle-Saeed

Since April 5, I have been at war….kind of sort of…..well, it sure felt like it. Not that one could know truly what a soldier goes through, and never to diminish that experience, however, when hearing stories of soldiers returning back from combat, it sure feels familiar, and relatable.

It all started with pre-surgical preparation or what happened before I entered the minefield. I tried to prepare as best as I could. Packed everything I may need, said my apologies and good byes to loved ones and friends (just in case), and equipped myself with talisman from almost every religion, lucky crystals, and of course, prayers.

24 hours after pre-admission, I received a battle wound…..a 12 inch abdominal vertical opening with staples running through it like train tracks holding my guts in. The pain after surgery is intense. It is brutal. If this wasn’t challenging enough, and this was my 11th surgery so definitely not a newbie in experiencing and understanding that this is part of getting through the war, the night of my surgery, the unexpected happened.

I was very close to losing my life. The worst part of it all was I, along with my mother, and nurse watched it slowly drift away within 5 minutes. It all began with, “Mommy, I am feeling hot. Something is not right.” She called the nurse in to take my vitals, and this is what was revealed. 102 fever, 120 heart rate and blood pressure of 90/55. Very low for me and the temperature very high for me (my baseline is 97.1). She took it again. 67/52. Frantically, she took it again. 57/41. All I remember was her standing by the door and yelling, “I need a rapid response in here.” I was going under. The last thing I recall was six residents and about five nurses and techs working on me.  Injections, pumping fluids, the resident telling my mother to leave the room, and then, I must have fainted. I woke up  to having three residents working on me. My IV hydration was now being pumped in at a maximum 999 rate. I was awake. This soldier was not ready to go yet.

They said I had the onset of sepsis. I was treated with four different antibiotics. More complications came soon after. Being in the moment or on the frontline, I armored myself with a brave face…ain’t nobody got time for feeling sorry for one’s self or tears when you are in fighter mode. There was the blood transfusion, the “collection of fluid” found which led to another procedure under general anesthesia with Interventional Radiology where I had a drainage tube placed, the C-diff scare, and the ileus which lasted for more than 3 weeks.

When you are in a slaying the dragon situation, you just swish swish with your sword, you are not really processing what is happening. Perhaps it was a 47 day stay of being in a flight, fight or freeze mode(poor adrenal glands), and I was fighting which sometimes felt like a losing battle.

Finally, I was released. The first thing I always do is my ritual bath. It just makes me feel better (see a previous post Sharon wrote on this topic here) As I laid there in the quiet, alone, I instinctively hugged myself around my abdominal area, and I cried. No, I sobbed. Not a pity party. It was almost a release. I just felt like I have been strong for so long….putting up the good face…keeping it all together….and finally, in the dark with only 3 candles lighting my way, I let it go.

But, did I? Soldiers have a hard time acclimating back to “normal” life. I have been going through this lately. Much more so than my shorter stays. When you are in life/death or painful situations, it is very intense and in the moment. I am used to the battle and the atmosphere of the war. These every day life “small’ battles (shoot ran out of bread)  others around react so intense to feels like in my misconstrued perception of life,  like really sweating the small stuff.

Two things have been helping me.  One is from a lightworker friend I met at an Open Center workshop in NYC, she recently commented on a facebook post about my frustrations towards my body not doing all the things I want it to do right now. She said, “Sharon, don’t do, just be.” That is really sticking to me. The other is from my holistic doctor. He keeps drumming in my head that this is not your normal stay for a small bowel obstruction. It was major surgery and 47 days. He keeps using the word, “recovery”.  These two phrases, “Don’t do, just be” and “recovery” are helping me not to be too hard on myself.

So, why in the title do I say that  perhaps going to war, or battling a surgery or a chronic disease may be good for something? I just feel that I truly am living every moment. The other day I was just mesmerized by a caterpillar on my front porch. It is the little things of wonder that become magnified. I am grateful for so many things…..especially being alive and breathing.

Finally, I would like to allow myself to have time mentally and emotionally to process and catch up to what happened physically. They say time heals all wounds. I sure hope so.

Have you ever felt this way? Would love to hear your experiences.


IMG_9124Sharon Coyle-Saeed was diagnosed with ulcerative colitis in 1990. She has three Associate degrees in Psychology, World Language, and Theater.  Sharon’s Bachelors is in Journalism & Mass Media with a Middle Eastern Studies minor from  Rutgers University. She is currently a graduate student of Clinical Social Work at Rutgers University with a focus on Aging and Health. Sharon just completed an internship at Robert Wood Johnson/The Steeplechase Cancer Center. She is a Reiki Master Practitioner, a freelance reporter for Gannett NJ, an IET Intermediate practitioner and holds certifications in EFT (Level One), Angel Card Reading, Angel Realm Reader and Aromatherapy (Stress Management, Essentials and First Aid). To help others is her sole and soul’s desire.