Feature Friday: Jenni Grover Prokopy, Chronic Conditions Health Activist

We’ve all been there. Whether it’s a new diagnosis, a problem with insurance or just one of those days when all you want to do is sleep.

But having a chronic illness does not mean you can’t have a fabulous life.

In fact, Jenni Grover Prokopy is on a mission to help all women struggling with chronic illness live their best life yet “…to nurture some of those deep relationships that you want to have, to have more success in your career, to find love, to get the kind of support you need and deserve, to have more fun… I mean isn’t that what life is about?”

You know those people you just know are here to offer good vibes and help others succeed? Jenni is certainly one of them.

Jenni was diagnosed with fibromyalgia when she was 20, and like many she thought her life was over. However, “After a few years, I started to figure out I could still lead a pretty amazing life despite illness… so I started ChronicBabe.com as a way to share my experiences and perspectives, and to build community.”

One word to sum up Chronicbabe.com? Awesome.

Within seconds of visiting the page, you feel uplifted, energized and ready to rock life. Jeeze even those withochronicbabe-logo-new-stackedut a chronic illness would find their spirits lifted by ChronicBabe’s sassy, authentic, hilarious and completely inspiring attitude.

“When I started my work, no one was writing about this – now, there are lots of places, but I still think ChronicBabe is unique in its voice and its position toward life with illness.”

ChronicBabe.com is a blog with a ton of social media presences. “I love my YouTube channel,” Jenni shares, “It’s so fun to interact with people that way. Plus, people get to see the real me and recognize that I’m not some person on a pedestal – I also have bad hair days and low-energy days but I still do my work, and I hope that inspires them.”

Any female who can still be as uplifting and awesome as Jenni on a bad hair day deserves some serious kudos.

jennicorporate-croppedI checked out the ChronicBabe YouTube Channel and as Jenni says “Video is where it’s at!” She posts weekly videos on AWAP Wednesday which stands for ‘as well as possible’, offering tips and techniques to help Chronic Babes live a daring, fun, and fulfilling life despite their illness.

ChronicBabe.com also offers a forum where fellow chronic babes can meet and discuss challenges and find support. There is even a ChronicBabe Secret Club that offers a ton of support and education each month on a theme to help ChronicBabes everywhere rock life!

But she doesn’t stop there; Jenni is working to rid the epidemic of chronic pain in our society. She is on a mission to inform the public, advocate for legislators that have similar goals, and build a bigger community. She speaks at events across the country and attends various foundations including her favorite, the U.S. Pain Foundation annual galas. “We honor tons of awesome folks with chronic illness who do such great work in their communities – it’s so fun because I get to meet some of my heroes!”

That’s really the highlight of her advocacy journey “…getting to meet women I’ve known online for a decade but didn’t know in person and hear how their life has improved because of ChronicBabe. Makes my hard work and challenges worth it!”

So now the most important question is, are you a chronic babe?

According to Jenjenniflowersni:

“Yes. Oh, wait—too fast? You have some doubts? Let’s see: Are you a chick? Check. Do you have a chronic illness? (You know, something that’s stickin’ with you, like fibromyalgia or depression or HIV?) Check, check. Are you ready to kick ass in spite of it? Are you grinning as you read that? Triple check. Yes! I proclaim you a ChronicBabe.”

Now the only question is: what are you waiting for?! Go check out ChronicBabe.com and be sure to check out their YouTube channel for AWAP Wednesdays!

And I am very excited to announce that Jenni will be releasing a new book, ChronicBabe 101, this fall so make sure to follow her Facebook and Twitter for release dates!

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.





Spread the Word: September 26th is Mesothelioma Awareness Day

September 26th marks Mesothelioma Awareness Day! This day honors those have battled or are still battling mesothelioma. This day is also meant to spread awareness for the disease and the toxic natural fiber that causes it.

What is mesothelioma?

You may ask, what is mesothelioma? It’s a whole lot more than the commercials you see on television. Mesothelioma is a rare and very aggressive cancer caused by exposure to asbestos. It can affect the lungs, abdomen and heart and is typically diagnosed in the later stages due to a long latency period that makes detection difficult.meso1

Once symptoms arise, they are difficult to detect and decipher as mesothelioma symptoms since they are common ailments, like fatigue, hoarseness, nausea, weight loss, chest pain and coughing. It is easy to look past these things, or even at times have them misdiagnosed as other diseases or health conditions.

The prognosis carries a devastating life expectancy of 12-21 months. The saddest part is that it’s totally preventable. We must all come together to spread awareness for this awful disease. Approximately 3,000 new mesothelioma diagnoses are given each year, and about 2,500 people will died from it each year in the United States. Globally, the annual death toll jumps to 43,000.

While the world is making strides to ban asbestos, we’re still not all the way there. Over 60 countries have banned the toxic substance, and another small handful are expected to ban asbestos by 2020. It is sad to say that the United States does not fall under either of those buckets–another reason why we must continue to spread awareness!
How can you make a difference?

To best protect yourself and your loved ones from the dangers of asbestos and the possibility of mesothelioma, be on the lookout for asbestos dangers in your home and environment. Houses that were built before the 19meso70’s very commonly contain asbestos. For a list of places and products that may contain asbestos, click here.
In addition to educating and protecting yourself and your family, you can help spread the word through your blog or social media platforms. Every new set of eyes on this message means we’re a step closer to 100% awareness of mesothelioma and the dangers of asbestos. When every person knows, they can then protect themselves and avoid the very unfortunate health complications.

If you’d like to help ban asbestos, you can sign a petition listed by the Asbestos Disease Awareness Organization (ADAO) here! As mentioned above, approximately 60 countries have banned asbestos, which means there’s a lot of ground to cover in terms of banning it worldwide. We cannot stop fighting until this toxin is banned globally!


screen-shot-2016-09-23-at-10-29-49-amThe Mesothelioma Cancer Alliance is dedicated to serving mesothelioma victims and their families. Make sure to follow them on Twitter and Facebook for the latest updates!


I’m nominated…now what?!


Nominated and wondering what’s next? 

Complete these 5 simple tasks in order to become a finalist!

1. Spread the word of your nomination. Tweet it, post it, email it, blog it- let everyone know you’re a nominee for the 2016 WEGO Health Activist Awards. Yes, it’s your moment to shine so own it! Share your profile link on all your social channels to capture votes!

2. Download your endorsement badge

3. Send any pictures that demonstrate your advocacy in the last year to awards@wegohealth.com

5. Send us a video on what the #HAAwards mean to you. Cell phone videos work great- make sure to film landscape!

5. Complete the sentence “I am a health advocate because…” and send to awards@wegohealth.com

Now all you have to do is give yourself a huge pat on the back for your accomplishment. You’re changing lives- remember that!

If you have any questions, feel free to email awards@wegohealth.com.


How Do I Access My Endorsement Badge?


So you’re nominated but now the big question is:



We’ve got you covered.

All you need to do is download your Endorsement Badge. You should post this badge on your website or blog to allow your followers to vote for you. You should definitely post to Facebook and tweet out your nominee profile link as well, that way followers can visit your profile and of course endorse you!

Ready to access your badge? Follow these simple steps and start capturing votes!

1.Go to the Health Activist Award Website

2.Login to nominee profile

3.Click “Get my badge” in the top banner. You can also click “Share My Profile” to share your profile to Facebook.



4.Use the drop down menu to select the nomination you would like to create a badge for. Please note if you have been nominated for multiple categories, you only need to download one badge as all endorsements are allocated to each nomination category (but if you want to download one for each category, knock yourself out! You deserve to have a brag moment.)


5.Copy the HTML Code in the white box at the bottom of the page.

6.Paste in blog. (Tip for WordPress users: Go to widgets create new text widget paste HTML code in box)

7.Tweet out your profile link and share your badge!


Best of luck!




Feature Friday: Presenting the 2016 WEGO Health Activist Award Nominees!


The WEGO Health team is super excited to present our 2016 Health Activist Award Nominees!



Each of you were nominated because you positively impacted someone’s life and that is certainly something to celebrate and be proud of- so take a moment to pat yourself on your back (yes- we are giving you permission to give yourself the credit you never give yourself!)

If you have yet to check out the nominee directory, it is most certainly something you must do! These activist all-stars are putting 110% effort into changing the healthcare landscape and empowering the patient voice. We are so grateful for the opportunity to celebrate their success and we certainly are excited to meet all the new health activists who have been nominated this year.

It continues to amaze us just how passionate these health activists are. Whether they are bloggers, tweeters, discussion leaders, Facebook leaders, they truly are taking healthcare to the next level.  They continuously provide the latest research and treatments, offer a laugh on the days you need it most and most importantly, they inspire their community to keep fighting despite their health challenges.

The nominees range from a vast array of condition areas and it really reminds us here at WEGO Health whyscreen-shot-2016-09-08-at-12-39-01-pm we do what we do, because there are SO MANY people out there ready to make a difference and we are eager to help!

So now the exciting part…Endorsements!

Endorsements will run September 12th to October 21st . Endorsements are a way to show a visual show of support (think of it as voting).

The three nominees in each award category with the highest number of endorsements automatically become finalists. However, votes are not the only way to become a finalist. Our distinguished judging panel will select 2 additional nominees to become finalists based on a number of other factors.

Now I know you’re all eager to find out how exactly you can get these endorsements. Well no worries, the WEGO Health team has you covered.

Each nominee will receive a badge that they can share on their social  channels and post on their blog/website.  All details and instructions will be sent to nominees next week in a kit filled with tips on how you can become a finalist.

We are thankful to everyone who has participated and we can hardly wait for our Awards Week, December 5th-9th.  We will be bringing you a week jammed packed with tips, tricks and tactics to assist you in your advocacy efforts (yeah…it’s going to be AWESOME!)

We do however realize there are still so many amazing health activists out there, so if you know of any all-stars who deserve some recognition make sure to continue to nominate them!

If you have any questions, please reach out to awards@wegohealth.com.


Best of luck! 


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.


It is all about me and guess what? It is all about you, too!

September is here and so is Sharon Coyle-Saeed’s monthly blog post! Make sure to check back in October for her next post. Looking for Sharon’s post from last month? Click here.
Happy reading everyone!

It is all about me and guess what?  It is all about you, too!

By Sharon Coyle-Saeed


sharon 4 I was feeling completely overwhelmed with everything that was on my plate or that was about to be on my plate. With going into an advanced internship at graduate school, my newspaper job assignments increasing, classes starting, full time housewife expectations still alive and well, both children transitioning to new schools this year, support groups to admin, texts, phone calls, messages and emails to respond to from friends, family, and a new cardiology health discovery of a triglyceride level of 517 and a “suspicious old myocardial infarction” reading on my CT scan a few weeks ago, how does one digest all of that when you are missing your large intestine and the small bowels remaining are laden with adhesions?

sharonThe answer came to me when I visited my holistic chiropractor, Dr. Harry B. Schick. I frantically communicated my above concerns while waving my hands expressively like an Italian describing how to make gluten free eggplant rollatini. He calmly pushed his glasses back up the bridge of his nose and said, “Health and kids.”  I asked, “What?”  He clearly was not getting the intensity of my situation.  This man of many words, pun intended, repeated, “Health, kids and if those items are in check, finish your school.”
He role played scenarios. “So, Sharon there is a great class at the Open Center, want to go?”  I said, “Yes.” He said, “No, I would love to, but I am focusing on my health and kids right now.”  By George, I think I’ve got it.

sharon5Equipped with this focus, I tested the waters on several friends and family. Guess what? It was gosh awful! I was responded to with disappointment, sadness, anger, feelings got hurt and I felt terrible. However, something quickly happened.  Those who really cared and stuck around, did not take it personally(and it is not), they started to come around and say, “I am happy you are focusing on your health and kids.”

Something else happened. I started to focus on my health and kids. And I am no longer feeling so bogged down with all these choices and avenues. I am so clear and focused because my priorities are very streamlined. This is the first year since 2010 I am out of the hospital to attend not one, but both of my sons orientations and see them off to school. The smiles on their faces as they walk in with confidence knowing I have their back makes any disappointments from others fade.

sharon3Disappointments from others? Oh yes!  In the past few weeks since making this decision or carrying out this brilliant recommendation,  I have been called “selfish” too many times to count. I like to think of it as self-full!  I try to explain it in this way when those around shout, “It is NOT all about YOU!”

Well, actually it is not all about me.  It is about my health. If my health is not there, I will be in the hospital. I will not be able to wash my children’s clothes, help with their homework, make dinner, clean the home, be a present daughter, sister, friend, wife and support person. I will not be able to do anything. So, in actuality, it is NOT all about me, it is about keeping me healthy, so I can be there for YOU.

sharon2I love people. I love serving the community and helping others. I love family. Through self-care only can I even hope and pray to give back.  Filling one’s vessel with water is not selfish. Giving all of your water and having nothing left to give, only leaves us both dehydrated.

Today, I dropped my eldest son off at school, made pancakes for my youngest, cleaned my home, exercised on the bicycle, checked in with the online support group, had some great convos with friends and family, took my supplements/making sure I am staying hydrated, taking breaks when I need to,  and planning a trip to the Patriots vs. Giants tonight at Metlife Stadium. I have no idea about the rules of football. However, I do know that the memories made while being a present mommy for these two boys while they laugh at me as I ask who scored a homerun tonight will be priceless.



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.






Feature Friday: Aaron Blocker, IBD Health Activist

“I really wish that I make some kind of difference in their lives and to show theScreen Shot 2016-09-02 at 11.33.15 AMm that even though IBD is a terrible disease that we can achieve great things. Not that it is an easy journey but that we are capable of so much even if we are sick.”

Capable indeed. Aaron Blocker, who somehow manages PT appointments, doctor appointments, grad school and his advocacy work, definitely lives out his words by action.

Aaron’s initial vision was to become a physician and work with IBD patients. However, as his activism grew, so did his interest in science. In May of 2015 Aaron received his B.S. Degree in Biology Medical Sciences despite undergoing 6 years of multiple surgeries and hospitalizations. He is now a Graduate Student finishing up his Masters Degree in Biomedical Research focusing on a thesis studying the role of the gut microbiota in IBD. To top it all off, Aaron plans to get his PhD so he can continue working with IBD research.

Although you may not need qualifications to be a health activist, Aaron certainly has them!

He combines this extensive scientific background with his own Crohn’s experience to educate the community about current IBD research and how to be an educated patient, so it’s no doubt how powerful his platforms have become.

Screen Shot 2016-09-02 at 11.31.12 AMHis website, SupportIBD.org, provides resources, his published science articles concerning IBD, and product reviews. He has spoken at events, including the CCFA Louisiana-Mississippi Chapter IBD patient education event. His Facebook page now has almost 23,000 members and he has about 3,000 followers on Twitter. His engagement with his community is truly inspiring. Just take a quick scroll through his Twitter feed and you’ll find him interacting with fellow community members and always asking the community for their input on his research. Even if you aren’t in the IBD community, he is always sharing events or groups for other communities. His favorite part of the advocacy community is the camaraderie between health activists across all condition areas, sharing “We work together for one cause and that is to help patients.”Screen Shot 2016-09-02 at 11.31.55 AM

So even though he’s swamped with seminars, research papers and thesis writing, Aaron continues to lead his IBD community, “I know how hard it is to battle this disease alone and how hard it is to get through all of the information on the Internet that can be scary.”

It wasn’t too long ago Aaron was facing the loneliness a new diagnosis can bring. In 2009, when Aaron was first diagnosed, he was unaware of any fellow patients and there weren’t many outlets for meeting people facing the same condition. So Aaron set off to create his Facebook page, “Support Crohn’s Disease and Ulcerative Colitis”, to meet fellow patients, which now has a monthly reach of 200,000.

I know what you’re thinkScreen Shot 2016-09-02 at 11.32.44 AMing, holy smokes this man is unstoppable. I mean he is referred to as the Bionic Man, but this is due to the fact that both of his hips were replaced owing to a rare bone condition called Avascular Necrosis. Nonetheless, he lives life with a superhuman tendency accomplishing more than most everyday.

But Aaron admits it hasn’t always been easy and his advocacy journey has definitely had its challenges. There were many times Aaron considered giving up, debating if he was making a difference or if his focus on advocacy would harm his career as a scientist-in-training. However, he says

“…then I think about the people who depend on me, the almost 23,000 Facebook members who come to my page for help and answers who struggle with the same disease I struggle with and that’s why I keep going. Patient advocacy is done because of a passion to help people. Not the followers, the media stories about us, but the undying passion to truly help struggling patients. That’s why I advocate. Because my voice is a voice for patients who depend on us to make this journey easier and to make sure their voices are heard through me.”


So yes, I would say Aaron Blocker is unstoppable. Sure, like any human he has moments of doubt and challenges, but it is very clear he is committed to his mission of helping fellow patients within his community and perhaps Dr. Blocker will one day cure IBD!

So be sure to check out his Facebook, visit his website and be sure to follow him on Twitter.

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.


Feature Friday: John Cummings, COPD Health Activist


“You have to be somewhat crazy to try a triathlon. To try a triathlon with COPD, you’re just out of your mind.”


Out of his mind? Perhaps. I’ll stick with saying that health activist JohnIMG_0083 Cummings is just admirably motivated to prove to others COPD is no reason to hold back.

“I tell all of the new COPD people I meet that it’s not a death sentence. Your disease management is a huge part of how well you respond,” John explains.

Although John struggled with respiratory issues since high school, he never let it disrupt his passion for athletics and his competitive nature. John was named an All-Star to the yearly Lions All-Star High School Football Classic in 1984 and was a top California discus and shot put thrower. It was not until he was training as a decathlete at UC Santa Barbara when he realized his numerous respiratory infections were impacting his training. Unfortunately, he faced the challenging realization that he was not healthy enough to continue training.

Screen Shot 2016-08-25 at 3.59.42 PMHe took this time to learn more about his condition and began following stricter regimens. By 2003 he found himself ready to train again, participating in 5k’s and a triathlon. Sadly, with any condition, where there are highs there are lows, and in 2013 he began to notice his workouts becoming more difficult and breathing becoming more of a challenge. John’s next year consisted of hospital stays, sleep apnea, respiratory failure and discouragement.

At this point, most of us would call it quits, but John is back to training for yet another triathlon, cycling races and more endurance events (Healthy or not- you have to be out of your mind for all of this!) John is making it clear he is committed, sharing “Just this past year, I’ve returned all of my oxygen equipment to the hospital and I’ve changed my career to accommodate my health.” In doing so, John is certainty showing fellow patients and caregivers that you can in fact live out your passion and be active, despite living with COPD.
Screen Shot 2016-08-25 at 3.58.47 PMHe is already helping so many newly diagnosed COPD patients. Using Instagram, John is able to answer all the basic questions these individuals have giving them some sense of peace. “It’s like walking out of the doctor’s office and meeting someone in the elevator who has the same diagnosis as you. It makes you feel like everything will be okay. At the least, it makes you feel like you can manage your life.” Surprisingly, health activism wasn’t something John really imagined he’d being doing.

After suffering from COPD for 25 years, specifically bronchiectasis, John decided to start to speaking about his condition. “Advocating for COPD helps me overcome the challenges of the disease. Advocacy gives me meaning, it gives me purpose.”Screen Shot 2016-08-25 at 3.59.01 PM

John says he lives by the words of Mary McLeod Bethune, an educator and civil rights leader, who said “As I give, I get”. John acknowledges her words, believing “It is through my giving nature that I actually feel stronger and more healthy.”

As if he wasn’t inspirational enough, John will be riding in a bicycling event as part of the COPD World team in France on September 4th. So everyone- head over to his website, follow him on twitter and stay up to date on his Facebook page because this is one event, and one activist, you won’t want to miss!


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.


Join us to Color The World Orange for CRPS/RSD Awareness on Nov. 7

sunset logo 2016

The third-annual Color The World Orange is Nov. 7 and we need your support!


Color The World Orange  is an annual event held the first Monday of November to spread awareness of Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). Around the world on Nov. 7 supporters will be wearing orange and hosting events to spread awareness of CRPS/RSD, as well as raising funds to support research of this debilitating condition.

To have the biggest impact, we need everyone in the CRPS/RSD community to get involved.


There are many ways to participate and we encourage everyone to be creative and most importantly have fun. The easiest way to get involved is to wear orange – a ribbon, a shirt, a bracelet — and post a picture to social media with the hashtag: #CRPSORANGEDAY.


Screen Shot 2016-08-23 at 3.38.15 PM
In past years, supporters have thrown orange parties, where everything on the table was orange. Supporters have hung signs and handed out pamphlets about CRPS/RSD. Some have met with politicians to discuss CRPS/RSD and others have spoken to local media, which led to news stories and TV segments.Screen Shot 2016-08-23 at 3.39.04 PM


Many offices and schools have gotten involved hosting orange days, where employees and students are encouraged to wear as much orange as they can. Some offices have allowed employees to display a basket of orange ribbons for colleagues to wear, along with informational pamphlets so co-workers can learn more about CRPS/RSD. Please make sure to get the needed permission before planning any events. You can download Color The World Orange pamphlets from our website at: http://bit.ly/1T9lRlJ


Another great way to get involved is to request that a building or landmark in your area be lit orange on Nov. 7.


We are still in the planning stages, but already 10 landmarks and buildings have agreed to turn orange on Nov. 7 for Color The World Orange 2016 including Niagara Falls, the Con Edison Clock Tower in New York, the dome of the Nassau County, New York Theodore Roosevelt Executive Legislative Building, the Houston, Texas City Hall, the Skyview Atlanta in Atlanta, the Terminal Tower in Cleveland, the SunTrust Bank building in Tampa, Florida, Emery Towers in Bradford, Pennsylvania and the Crazy Horse Memorial in South Dakota. The Myriad Botanical Gardens in Oklahoma City will be lit orange Oct. 31 – Nov. 4.


Screen Shot 2016-08-23 at 3.38.30 PMWe had a goal to light the night orange in 2015 and due to the hard work of Color The World Orange supporters, more than 30 buildings around the world turned orange to bring awareness to CRPS/RSD. We hope to top that this year!


For the third year in a row, a supporter will run the NYC Marathon for Color The World Orange and for the first time, a supporter will run the Chicago Marathon for Color The World Orange. Supporters in the UK and Australia have also hosted walks and challenges to bring awareness to CRPS/RSD.


In the last two years, Color The World Orange events and supporters have raised more than $11,650 for the national non-profit RSDSA to be used for research.
In addition, last year 76 proclamations were granted by U.S. Governors and local officials recognizing Color The World Orange 2015 and November as CRPS/RSD awareness month.


Color The World Orange was started in 2014 to bring global attention to a disorder that, unfortunately, too few people understand. The aim of the event is to have one day where everyone affected can join together for one common goal—bringing awareness to CRPS/RSD!


Screen Shot 2016-08-23 at 3.37.48 PM

We truly believe that if we stick together, our voices will be heard. There really is strength in numbers.

So let’s all work together to make Color The World Orange 2016 the biggest yet by wearing orange, and encouraging friends and family to wear orange! Don’t forget to post all of that orange to social media with the hashtag: #CRPSORANGEDAY.

Let’s show the world that while we are in pain, we are strong!

For more information and more ideas on how to get involved, please visit our website at: www.colortheworldorange.com or our Facebook page at: https://www.facebook.com/ColorTheWorldOrange

sunset logo 2016

Color The World Orange is an annual event held the first Monday of November to bring awareness to Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy (RSD). It was started in 2014 to bring global attention to CRPS/RSD.


How to Turn a “Turn in the Road” Into Your Turning Point

You’re on a road, and you have to make an unexpected turn. Sounds like life, right?

I’m the only person in the world that feels this hopeless.

How can things ever get better?

I feel so alone.

These thoughts raced through my head for years.

These were thoughts I had when my “thought-out” life took a detour.

What’s a detour?

detour is a curve in the road, a bump in a path, a big sign in the middle of your trip that says sorry, you have to go that way. Nobody expects a detourto happen in life. It’s what happens when we think we have things planned and all figured out, and then we’re thrown a curveball.

Believe me, I didn’t expect to be in a coma my senior year of high school. It’s a mouthful, I know. That was my detour. I thought in just a few months, my path would lead right to college.

The most important thing I learned about a detour? You can still live a happy, healthy fulfilling life. I even got to college — at 25!

But the great part about a “detour?” You get to travel a route you never would have expected. The road may be tough, long, winding and seemingly out of the way, but what I finally realized is that it’s the twists and turns in life that ultimately make us who we are. Now that I’m in my third year of college, I’ve realized that physical and mental health issues are things we all think about, even if we don’t label what we experience as an “illness.” We all need to learn how to cope when life doesn’t go like we expect it to. We all could use a few tips on learning how to love who we are.

My advice as a “Detourist?”

  1. Show up.
  2. Trust that you are capable.
  3. Be curious to see where the detour may lead.
  4. Here’s the bonus step:Find great resources.

IMG_20151016_120040Reaching Out

I found wonderful resources. The National Alliance of Mental Illness started as a “small group of families”, and has blossomed into a supportive, educational organization with local chapters throughout the country. Active Minds educates and empowers college students through nation-wide chapters, spreading awareness and lending support. The Jed Foundationoffers more coping strategies for college students through mental health awareness and suicide prevention programs.

When an unforeseen blood clot caused my body to go into septic shock, my life changed forever. Now, it was my devoted family who waited patiently and lovingly while I recovered from a three-month coma. When I awoke, I waited many more months before I could take a breath of outside air once again. I became extremely well-versed in patience — little did I know that I’ve have to wait eight more months before I was discharged from the ICU, six years before I could drink a sip of water or eat a morsel of food again and 27 surgeries before doctors could create a makeshift digestive system for me.

WP_20150830_10_36_44_ProAs a born go-getter, I’ve never been great with “patience.” So I became extremely frustrated as doctors explained to me how “it would be a long road to recovery, but I’ll get there.” But healing physically and recovering my “self” emotionally, feeling my aliveness as well as being alive… I learned that this is a daily process, a life-long one. Life will not always be perfect, and there’s no reason to wait until things are.  In the meantime, we keep traveling.

We all have detours in our lives, and we become empowered when we trust that we can travel those detours and come out OK — and even better! This “detour” in my path has turned into the richest time of my life and I’m overwhelmed with gratitude. That’s why I call it my “beautiful detour.”

Watch my TEDx Talk about Detours here:

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.”


Amy Oestreicher B&W 2006Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress, and playwright, sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking.

As the creator of the Gutless & Grateful, her one-woman autobiographical musical, she’s toured theatres nationwide, along with a program combining mental health advocacy, sexual assault awareness  and Broadway Theatre for college campuses.

To celebrate her own “beautiful detour”,  Amy created the #LoveMyDetour campaign, to help others thrive through difficulties.

As Eastern Regional Recipient of Convatec’s Great Comebacks Award, she’s contributed to over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, among others. 

She has devised workshops for conferences nationwide,  and is this year’s keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability.  Learn more: amyoes.com. See what Amy’s creating every day and support #LoveMyDetour at patreon.com/amyo