26
Aug

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.

24
Aug

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.

 

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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!

 

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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.

23
Aug

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

 

22
Aug

So, What Exactly Is Truvio?

Truvio…such an interesting name for a survey platform.  What exactly is it?

Well, I’m glad you asked!  I’ll tell you what it is and how we use the responses we receive.

truvio

So, what is Truvio?

The name, Truvio, means “the true voice of the patient” which is exactly what we are getting from you.  We know that, as a patient leader, you can provide us with insights on behalf of your online patient community.  We then take these insights, analyze them, and share them with our sponsors so that they can make decisions that will benefit the patient community as a whole.

 

How does Truvio work?

It’s really very easy.

  • WEGO Health Truvio Methodology When a sponsor needs insights from the patient community on any given topic, we reach out by way of text message to patient leaders who focus on the condition area(s) that the sponsor is interested in.
  • That text message contains a link to the beginning of the Truvio study.
  • The patient leader can then click on the link to gain access to the Terms of Service page.
  • If you agree to the Terms of Service page, you then move on to the study itself.
  • Read the background, look at the stimuli (if included), and then review the questions.
  • Once you have reviewed the questions and indicated that you want to proceed, you will click on a button which will give you the phone number to call in order to provide your responses.
  • Responses may be relayed via keypad or voice recording, and we will let you know which type of response we are seeking for each question.
  • Finally, you provide your name and email address, and then you’re done!
  • If there is an incentive involved, it will be sent to the email address you provide within 2 business days of when we close the study.

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What makes someone a good potential Truvio participant?

We look for patient leaders who are speaking on their social media channels about the condition area for which we are gathering the insights.  The more activity we see from you on that condition area, the more likely it is that we will invite you to participate.

 

What are a few tips for providing good responses that are useful for the sponsor?

  • Elaborate, elaborate, elaborate! Take the time to think about what it is that we are asking you and then provide detailed answers.  Does this mean that a five minute answer is what we’re looking for?  No, not necessarily.  We just want answers that will actually help the sponsor in their decision-making.
  • No AEs, please! We ask that you keep in mind that any time you share with us an AE (Adverse Event), we have to report it to the proper authorities.  And, the chances are pretty good that we will actually need to get back in touch with you for additional information.  So, it’s best that you not share with us that “I (or I know someone who) took Product A and it did this bad or unexpected thing.”  Do not mention a product and a side effect, whether bad or unexpectedly good, in the same sentence or even the same study.  I really can’t stress this enough.
  • Speak clearly when providing all of your voice responses and make sure that the background noise is kept to a minimum. Doing a Truvio while you’re in a car is not optimal because we can hear the other cars in the background and cell reception can go in and out.
  • Make sure that your answers match up. If we ask you to rank various resources using your keypad for one question and then in the follow-up question ask you to provide your rationale for your top two choices, make sure that they are the same two that you indicated as the top two in the ranking question.  Just saying.
  • And, last but definitely not least, please make sure that you respond in a way that is stated on behalf of your community. We do ask for your personal opinion on a few questions, but typically we are seeking responses on behalf of your community.  We are coming to you as the leader of a patient community and we want to be able to provide findings to the sponsor that echo the opinions of the patient community as a whole. Don’t worry- we will only send you surveys that concern your community.

Author Jamie Davis can assure you,

“The surveys sent out from the Truvio team are always relevant to my community and serve an important purpose to connect disparate segments of the healthcare field with each other more effectively.”

 

How can I get involved in Truvio studies?

WEGO Health TruvioMake sure you are opted-in to Truvio.  Not sure if you are opted-in or not?  Better to know for sure.  Click on this link and fill out the opt-in form.  The more information you provide that we can use, the better.

So there you have it!  That’s Truvio in a not-so-small nutshell.

As I said before, we have an awesome network of patient leaders.  As Sickle Cells Disorder and Type 1 Diabetes Advocate Elle Cole says,

“Truvio is great because it is survey tool that helps me, a health activist, share my thoughts about patient advocacy, healthy living, and the healthcare industry. I feel that through the surveys I’m able to raise awareness and give my audience a greater voice. The best characteristic about Truvio is that it helps to bridge the gap between communities and healthcare professionals. As a result of taking the surveys, I hope that patients, caregivers, and healthcare professionals can build better more effective partnerships. ”

 

At WEGO Health, we truly want to do all we can to help you to bring the “true voice of the patient” to those who can effect change for the benefit of all.


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Sue Daum is the WEGO Health Insights Manager. Seen as the WEGO Health Truvio Guru, Sue truly embraces raising the voice of the patient. Follow Sue on Twitter and Facebook!

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19
Aug

Feature Friday: Rick Phillips, RA and Type 1 Heath Activist

A blog about Rheumatoid Arthritis and Diabetes may seem like an odd combination, Screen Shot 2016-08-19 at 10.20.53 AMbut as a person with both conditions, Rick Phillips could not seem to separate the two. After 33 years with diabetes, Rick had figured he might have some insight to share and created his blog hoping to improve the lives of others living with the same conditions.

Knowing quite well the difficulties living with these conditions can bring, Rick blogs about his own experiences and addresses the issues of access within his communities explaining “We see restrictions on technology in the diabetes community and restrictions on access to medication in the RA community.” Rick believes this is his communities’ fight of the future.

And it only empowers the message he sees prevalent across both his communities: that no one should ever be alone in their condition and that it’s always easier with a supporting and caring communit2y.

Luckily, that’s exactly what Rick loves doing- building a community. So realizing that although the RA community is strong, not everyone knows each other, Rick decided to bridge the gap with RABlog Week.

Rick launched the first RABlog Week last year and was very pleased with the results. This year however, he is hoping even more bloggers join this 5 day event to build awareness for the RA community.

The idea of RABlog week actually came from a community of knitters (imagine that?!).The knitters raised awareness of their craft through a fiber-blogging event called Knitting and Crochet Blog Week. Then in 2010, Karen Graffeo brought the concept to the Diabetes community with #DBlog week. Seeing it thrive within the diabetes community, Rick decided to bring it to the RA community just last year, hoping to build the community through words.

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What is #RABlog Week

RABlog Week is a 5 day event, Monday September 26th– Friday October 2nd involving as many bloggers as possible. Through RABlog week, Rick hopes to build the social network of Rheumatic bloggers.

Each day highlights a new topic, encouraging bloggers to write about their own experiences and thoughts. If the topic does not resonate with you don’t worry, Rick will be offering 2 wildcard days so there’s no reason not to join in on the fun!

Who Can Join In?

Of course anyone who is personally affected is welcome to join- no need to be a professional blogger. Even anyone who cares for someone with a rheumatic condition or knows someone with a rheumatic condition is welcome to join. “After all,” Rick says, “it is these people who share the journey and assist us in living our lives in the best possible way.”

Topics of #RABlog Week

This is the best part, YOU get to choose! I Prompt selection continues until August 31st so make sure you suggest any topics you may be interested in here. And don’t worry, Rick understands the constraints RA can have on patients, saying “Given sore joints, doctor appointments and treatment complications we need extra time to write all seven blogs” so all topics will be announced in advance.

finalbadgejpgSign ups begin shortly after September 1st so make sure to watch the registration page for updates. Rick is hopeful that events like this will only solidify the community, saying, “It takes all of us, but someday we will win our war on RA and Diabetes”. So join the fight, head on over to the RABlog week page and follow Rick for all the latest updates.

 


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.

8
Aug

2016 Health Activist Awards

The WEGO Health team is overwhelmed by the amount of nominations we have received so far! We’re grateful to meet so many inspiring health activists and share in your achievements.

Now that nominations are underway, we wanted to take a minute to explain the process of this year’s program. It’s similar to People’s Choice Awards, allowing the general public to voice their opinions- but instead of celebrating actors and the top song of 2016- we are recognizing the individuals making a difference in the online health community. The Health Activist Awards consist of three separate phases: nominations, endorsements, and judging.

Nominations

Screen Shot 2016-08-08 at 12.54.30 PMThe Nomination period is currently open. We want to make sure all the health activists out there get recognized, so nominations will remain open until September 7th!  Please note there is no endorsing during this period. Instead, feel free to retweet your nomination and share your achievement with your readers/followers. This will encourage your audience to visit the awards page and potentially nominate you for multiple different categories. By spreading the word of the award program, we can build a better community for our members. The stronger the online health community, the stronger the patient’s voice!

Endorsements

The Endorsement period will run September 12th to October 21st.  Endorsements are a way to give nominees a visual show of support. During this period, each nominee will receive an Endorsement badge to post on all social platforms. The three nominees in each award category with the highest number of endorsements automatically become finalists so make sure your readers/followers know to endorse you – tweet it, post it, email it, blog it- just get it out there (and make sure to tag us, nothing makes us happier than some social media love)!

Judging

Judging will take place October 24th to November 18th. There are two rounds of judging; the first determines the five finalists of each category and the second round determines the final Health Activist Award winner.

  • Opening Screen Shot 2016-08-08 at 12.36.57 PMRound: Although the three nominees with the highest number of endorsements are automatic finalists, two additional finalists will be determined by a distinguished judging panel based on a number of factors, not simply endorsements.
  • Second/Final Round: After the five finalists are chosen, judges will score each of them based on their use of social media, their fit for the award, and how effectively they engage their online community. WEGO Health will tally these scores and announce the winners at our annual WEGO Health Activist Awards Ceremony.

 

The Health Activist Awards week will take place December 5th-December 9th, concluding with the actual Awards Ceremony.  We absolutely cannot wait to see what this year’s award program brings! Make sure to keep nominating your fellow health activists and spread the word of the Health Activist Awards! Best of luck!

5
Aug

Feature Friday: Ross McCreery, CRPS/RSD Health Activist

“As a health activist community we need to continue our fight! People are starting to listen and our voice is starting to bring about change.”

A powerful, but exciting and true statement, especially from CRPS/RSD health advocate Ross McCreery, who works endlessly to make a difference.

image (2)When Ross failed to find the help he needed to diagnose and treat his CRPS, he started sharing his own journey with others. This, in turn, sparked a passion to help others who were fighting similar battles, but mostly prompted a need to educate and raise awareness for this rare condition. As Ross continued to network he found his voice by realizing that he “didn’t want to just sit around waiting for things to happen. I wanted to make whatever difference I could no matter how big or small. I just decided to put myself out there and jump in with both feet.”

And oh did he jump! Frustrated from the doctors, physicians and government not really understanding his illness, he decided to do some research into his Provincial and Federal Health Care just last year. Unfortunately, his research revealed just how little was being done in research and care for those affected by CRPS. So it became Ross’s mission to raise awareness and bring change: addressing the lack of education and expertise needed to diagnose and treat individuals with CRPS, and working with the government to make sure it recognizes chronic illness for what it really is.

With his advocacy, he hopes to see more funding and research going into findiFun Facts With (1)ng the cures for his illnesses. He also hopes his efforts will improve the interaction between patients, healthcare and the government. Ross recognizes that chronically ill patients are often told that their issue is “all in their head” which can invalidate the patient’s voice, but he refuses to sit back and let the injustice continue. Ross has sent letters to the Premiere, Health Minister and other officials in an effort to make this change an important initiative.

Fortunately, his impressive efforts have brought great success! Ross contacted his Provincial Government and was successful in having a CRPS Awareness Day for the Province of Saskatchewan. Ross plans to hold an event on this day with goal of not only raising awareness, but also raising funds for research and education. He hopes that one day, CRPS Awareness Day will become nationally in Canada!

If you’re not already feeling completely and utterly inspired from what Ross has accomplished, consider this recent quote from the outstanding advocate himself: “…you can’t make a difference if you’re sitting on the sidelines waiting for things to happen.” Instead, he advises us to find the courage within yourself to take action and “…believe in yourself and know that you can make a difference.”

Ross is clearly an advocate to admire and he definitely deserves the support and respect of the online health community, so head over to Ross’s blog and make sure to follow his twitter and Facebook account in order to stay up to date with CRPS Awareness Day!


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 onTwitter andFacebook.

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3
Aug

It Is ALL In Your Head!

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

It Is ALL In Your Head

By Sharon Coyle-Saeed

How many times have you heard this? I am thinking many who suffer from an autoimmune disease may hear, “It is all in your head!” Well, in the case of Inflammatory Bowel Disease or IBD, it is ALL in the digestive tract and not even in the head, thank you very much.
While walking out from of all places a seminar with fellow lightworkers, granola hippies and feel good Buddhhead1isty types, a woman and I from the event started talking and lo and behold, my intestines came up. What I heard back in return was, “Oh, all digestive diseases are psychosomatic!” I really can not tell you the conversation from that point on, as she lost me at ‘psychosomatic.’ It struck a chord. A deep chord. And a dissonant one at that. And, I wanted to explore why it disrupted this interlude.

Was I the one actually in denial? Do I really think that digestive diseases are caused by stress and sweeping that under the rug? Why did this have such an effect and affect on me? Why was I getting so defensive?
First and foremost, I wanted to look up the term, psychosomatic. What exactly does that mean? Sounds so psychobabble-ish. According to Webster’s Dictionary, the simple definition is ,“caused by mental or emotional problems rather than by physical illness.” Is IBD psychosomatic? Are autoimmune diseases psychosomatic? IS this all in my head? According to this d efinition: absolutely NOT! head2
No wonder why I felt like putting on my boxing gloves and longed to go all Rocky Balboa, “Yo Adrian!” on this woman. Hey, I am a Jersey girl. Have you not seen Teresa Giudice flip the table? Mess with my children or my family (in this case my IBD family) and watch how I can turn from June Cleaver to Ghetto Irish in seconds.

Being the founder of ibdjourneys, an online support group for over 2,000 fellow IBD’ers, I read the stories and hear the suffering hourly, and I can firmly state this is not at ALL in anyone’s head. Also, since being diagnosed with IBD in 1990, and over 10 surgeries, 14 picc lines, countless NG tubes, a temporary ileostomy, a permanent J-pouch, and no large intestine later, I can personally attest to that it is not all in my head either.

It is a serious autoimmune disease. WebMD (gotta love WebMD) states the cause is unknown and that it is from “some agent or a combination of agents — bacteria, viruses, antigens — that triggers the body’s immune system to produce an inflammatory reaction in the intestinal tract. It could also be that the body’s own tissue causes an autoimmune response.”
Then why do we, in the IBD community hear this quite a bit? All in one’s head? I will tell you why. When people sometimes get stressed, they may get an upset stomach, diarrhea, nausea or stomach ulcers. Crohn’s Disease or ulcerative colitis is definitely not just a nervous stomach.

How about stress though? It is all in the dissection of the definition! With psychosomatic, the “cause” is from mental or emotional problems, IBD is clearly not caused by mental or emotional problems. However, in my humble opinion, I feel that EVERY single health condition can be aggravated by stress.

AND this is where it gets tricky! Stress may bring an illness out of remission or worsen a flare up, but it is NOT the cause of the underlying condition. ….whatever that condition may be. Also, key word is “may”. Sometimes an illness may creep out when we are most relaxed and not stressed without any warning. I can only speak to IBD and for this health condition, there is no set rhyme or reason…..for cause, for treatment, for diet. It truly is so individual that one size definitely does not fit all. WE all can support each other on our journey and find the similarities, yet, everyone’s journey is so unique.

Ultimately, my reaction of being defensive is simply from hearing over and over, meditate, chillax, let it go, and guess what? I have tried ALL of those things! Bottom line is: when this disease wants to attack, it will. Whether I am singing kum ba yah or not…..so do me a favor, don’t say it is “all in my head” or that my disease is “psychosomatic” because that pisses me off and I am trying to not get stressed here.head3


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.

29
Jul

Feature Friday: Molly Schreiber, Rheumatoid Arthritis and Type 1 Diabetes Health Activist

image1 (1)A positive attitude and a healthy dose of humor are Molly Schreiber’s go-tos when it comes to dealing with her chronic conditions. Anyone scrolling through her tweets or Facebook posts will find themselves smirking from her witty comments and her humorous approach to a challenging life with Rheumatoid
Arthritis and Type 1 Diabetes.

However, humor wasn’t always in the picture. When she was initially diagnosed with Rheumatoid Arthritis, she turned to the Internet in hopes of not feeling so alone, only to find some alarming information.

 We’ve all been there – a simple Google search unexpectedly reveals terrifying side effects and horror stories – a harsh contrast to the information you envisioned finding! Like so many people, Molly’s illnesses began to make her feel afraid and alone.

Molly SchreiberThat is the sole purpose of Molly’s health advocacy; to make sure others are not alone. Especially when it comes to a condition like Rheumatoid Arthritis, Molly explains “…it can really alienate you from others, simply because the disease isn’t easy to understand.” 

 This connection is her absolute favorite part of health advocacy. The impact of two individuals sharing a similar experience can be so powerful! In fact, her favorite conference has been HealtheVoices simply because she was able to connect with so many individuals, even those with different diseases, and create friendships that will last a lifetime!

 Unfortunately, like many, Molly recognizes the disconnect between patients, providers, insurances companies and drug manufacturers. She makes the point that “Everyone is fighting for their own bottom line and the person behind the patient is lost in all of this.”Screen Shot 2016-07-26 at 10.16.39 PM

 But all hope is not lost. Molly hopes her advocacy efforts can fill that void. Her wish is that “…a newly diagnosed patient with RA or Type 1 would immediately know that there is a huge community out there with open arms.”

 So if you’re looking for a community or maybe a good laugh, head over to Molly’s TwitterFacebook or blog!


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 andFacebook. 

28
Jul

Fifth Annual WEGO Health Activist Awards

Nominations Are Now OPEN (1)

The Fifth Annual WEGO HealthActivist Awards have officially begun and nominations are now open!


The WEGO Health team is beyond grateful to be part of a program that recognizes the Health Activists who have made a difference in the online health community. There is nothing more rewarding than celebrating the tweeters, Facebook posters and bloggers who continuously empower other patients and advocate for their community.

We are looking to recognize all of the great Health Activists out there, so please take a moment to tweet, blog, email or post to Facebook to let your friends, family, fans and followers know how they can get involved!

If anyone has inspired you or helped you along your health journey, take the time to say ‘thank you’ by visiting the nomination page- it only takes 1 minute!

Make sure to check out the Awards website to learn more about the 2016 award categories. With 14 awards, there is something for everyone, so don’t be shy- start nominating your favorite leaders today!

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