June 4th, 2015

Balancing Every Day Life – Health Activist Twitter Chat

by WEGO Health

Bu13EAPIMAArNaM

 

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June 3rd, 2015

WEGO Health Team Member Spotlight

by WEGO Health

This month we’re learning about WEGO Health team member,  Laurel! 

laurelTitle: Business Development Associate

Explain what you do at WEGO Health!

I am responsible for uncovering opportunities with potential sponsors. I come in early to identify the sponsors needs. I then help design the best program that aligns with those needs and also connects with the strengths and needs of our network.

 

How have Health Activists affected your outlook on health? 

I appreciate my health and my children’s health so much more and feel blessed that we are fortunate enough to be healthy. I was diagnosed with hypertension when I was 21 and I have always been angry about that, but that pales in comparison to what many others are going through with her health. It’s inspirational to see how positive, supportive and open the Health Activists are to their communities.

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May 22nd, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Julie

by WEGO Health

juliecerrone

1. Why did you become a Health Activist? Tell us your Health Activist story! 

I began having problems when I was in 5th grade. Having been really into dance and softball, I had to give both up for something less stressful on my joints. From 5th grade until I graduated high school, I always had to be careful in gym class – never running the 1-mile fitness test.  It seemed every year I was in physical therapy for some problem and was always rocking the latest knee brace or crutch design. I constantly was labeled the ‘hard’ or ‘interesting’ case and seemed to stump every doctor I visited.

Once I got to college, I thought all my problems were over! I still continued to joke about how the doctors always said I’d probably need a knee replacement by the time I was 30, but I seemed to be doing well. Then, in my late 20’s my immune system came back with a vengeance.

I held an IT consulting job that kept me on my toes 24/7/365. My pain came back in the form of hip pain that traveled down my leg to my knee, then to my ankle and eventually making it unable to straighten or bend my whole left leg. For weeks, I walked all over New York City and traveled through Atlanta’s airport like this. Wincing in pain as I’d hobble to and from my gates. Little did I know that my whole life was about to COMPLETEY change.

June 13, 2012 went in for what I thought would be a simple surgery (which was my 4th knee surgery) and have yet to return. That simple surgery turned into another surgery 2 months later (5th surgery), hospital visits, endless testing and 6 months of bed rest. It forced me to go out on disability – first short term, which then turned to long term. It changed my day-to-day activities; it really changed my whole sense of normal.

At first, I was not a fan of all the changes. I was bitter, angry, upset, hurt, scared, nervous – if you could feel it, I definitely was experiencing it. Here I was, at 27 years old, out on disability while all my other friends went about living their daily lives. My life was sent to a complete halt, while everyone else’s continued to move onwards. Relationships fell apart, my mindset fell apart – it was extremely difficult.

It wasn’t until a family trip to Florida when I had a big ‘aha’ moment. I was always into singing and while in Florida I auditioned for the American Idol Experience. After spending the previous 6 months pretty much on bed rest, I was cast in a show and sang for hundreds of people. I won the afternoon show and advanced to the finale show of the day.

As I stood up on that stage, I began to tear up.

Just because I had a new ‘normal’ didn’t mean it had to be a BAD normal. It was just different – I had to get used to it being different.

Just because I couldn’t do everything I wanted to do, didn’t mean I couldn’t still do some of the things I enjoyed. Activities can be modified!

Just because my life had completely flipped upside down, didn’t mean there wasn’t a silver lining in it.

Today, I’m still on disability, but I’m working towards getting back to work full-time. Not back to IT consulting, but to a completely new field of work that my disability has brought to me. I’ve realized that I’ve been given the path I’m on for a reason and that reason is to help others who are on similar paths. I’ve become a certified holistic health coach, I’m working towards becoming a certified yoga instructor and even looking at furthering my medical knowledge through possibly obtaining a masters or functional medicine certification.

Sure, autoimmunity has taken away a lot of things in my life, but autoimmunity has also given me so many blessings in my life. I’m so passionate about living a happy, positive, fulfilling life and I love to help other chronically fabulous patients see that as well.

 

2. What are your goals for Health Activism in 2015? 

My biggest goal in 2015 is to a start group coaching program that will also have a ‘support’ group component to it. I think one of the best things that we can do as chronically fabulous patients is to seek the support of others going through similar situations. I really feel like group coaching is my calling and now, more than ever, I feel like I need to start implementing it. My vision is to help patients go through making dietary and lifestyle changes, in a group setting, to help manage their symptoms. I’ve started working with a local institute to create this program in Pittsburgh, but my next focus is to create a virtual program so that all my spoonie friends all over the world can attend it too!

My second big goal is to buckle down and really concentrate on my book. I’ve been floating around about 7 or 8 different book ideas, but I really need to stop, concentrate and just do it! I have some really amazing ideas to create very needed patient resources and I feel like 2015 is the year to start making that happen!

 

3. What awareness event or effort are you most excited about in your condition?

I’m extremely excited about all the work and events The National Psoriasis Foundation are doing. They’re SO patient focused and really are an amazing foundation for those of us out there living with psoriatic arthritis and psoriasis! The research their supporting is really going to make an impact – in EVERY patient. Why? Because psoriasis is one of the easier autoimmune diseases to studying since it occurs at the skin level. I truly believe the research that is being done is going to change the landscape of autoimmunity forever!

 

4. If you could tell others a few things about your condition and your community, what would you want them to know? 

Never, ever, ever, ever give up! We all have bad days – even perfectly healthy individuals! No one is ever “worse off’ than someone else.  I truly believe that the obstacles we face in life are meant to teach us important lessons. Try to look for the lessons in your journey. And remember, it is a journey! There will be ups and there will be downs. But it’s YOUR journey, so make it the best you can. You are so strong, so powerful, so amazing. Never doubt that. And the times that you do start to doubt that, turn to the ridiculously, supportive and caring chronic illness community online. I never used twitter before I got into health activism and it truly is one of the greatest tools we can have in our tool box as chronically fabulous patients.

 

5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?

CONGRATULATIONS FOR BEING AMAZING! We need to make sure that every patient out there realizes they need to be a health activist for their own health. With our current healthcare landscape, it’s so easy to get lost in the many levels. When we arm ourselves with the best knowledge and support that we can, we’re increasing our chances of healing by 1000000%. (It’s science – and also a statistic I totally just made up.) But honestly, science does show that when we have a positive outlook or we truly believe something will work, it’s more likely to work! Healing is an all encompassing event. We need to be committed mind, body and spirit to true healing. By using all the resources we have at our fingertips we can not only heal ourselves, but learn to live our best possible lives. Explore and experiment! Try making dietary and lifestyle changes, try medications, talk with multiple doctors – don’t be limited by what “one doctor tells you” or what “society thinks you should be”. I actually believe that we’re lucky because we have the opportunity to stop, take a look at everything and truly be grateful for what we CAN do. Don’t be limited by what you CAN’T do! And at the end of the day, be grateful. Be grateful for your journey, be grateful for your support system and be grateful for your life!

 


 

Julie Cerrone is an American Association of Drugless Practitioners Certified Holistic Health Coach, ePatient Advocate, doTerra Wellness Advocate, speaker and spoonie blogger thriving with psoriatic arthritis, avascular necrosis of the femur, complex regional pain syndrome and has battled melanoma, depression and anxiety. Using her personal mantra ‘it’s just a bad day, not a bad life’, she started itsjustabadday.com, which was named one of the top 5 psoriatic arthritis blogs by EverydayHealth.com. Staying busy is a way of life for Julie. Some of her accomplishments and activities include: 2014 Stanford Medicine X ePatient Scholar, current mentor for the National Psoriasis and Psoriatic Arthritis Foundation, current member of the Advocacy and Mission Committee for Arthritis Foundation, active participant in WEGO Health projects and was named Best In Show: Twitter in the 2015 Health Activist Awards, passionate member of the IRT Digital Activist Team, current coach of nutrition and wellness classes at the Avani Institute in McMurray, PA and excited member of the Intake.Me Patient Advisory Board.

 

May 21st, 2015

Caregiving #HAchat with AARP and Amy Goyer #caresupport

by WEGO Health

This week, we hosted a Twitter chat with AARP and special guest, Amy Goyer, on caregivers and the resources available to them. Were you unable to join the chat? We’ve got you covered! Check out the recap below:

Bu13EAPIMAArNaM

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May 20th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Sara

by WEGO Health

 Check out what Sarah has to say about her health activism and the advice she’d give to patients beginning their Health Activism. 

Sara

1. Why did you become a Health Activist? Tell us your health activist story.

I started Inflamed & Untamed in 2011 after six weeks in the hospital, having to stop work and school again. I didn’t have anything to do to fill my time and I became depressed alone at home feeling worthless and like nothing I did had any purpose. I opened my computer and recorded my first video blog and uploaded it to YouTube. From there I started writing blogs and doing videos frequently not expecting it to go anywhere, but it blew up pretty fast! I felt like I had a real purpose after that. :) read more »

May 19th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Kendal

by WEGO Health

Check out what Health Activist, Kendal, has to say about her health activism and her goals for 2015!

hawinner

1.  Why did you become a health activist?

After being diagnosed with Lyme Disease in 2014, I was inspired to explore happiness through a healthy lifestyle, and of course, all while wearing a great pair of high heels!  I became gluten, dairy, and soy-free and began to experiment in the kitchen.  What I discovered was a new world filled with wonderful flavors!  I began to photograph my journey and as my passion for healthy living grew, I knew I needed to share it with others…thus, the birth of my blog, Health and High Heels!  Come visit me at healthandhighheels.org.  This is where I share my healthy recipes, photographs, “fun foodie facts,” and healthy product reviews.  My goal is to excite you about healthy living and to encourage you to try a recipe or two, visit your local farmer’s market for fresh organic produce, or even come up with original recipes! Overall, I urge you to begin discovering what healthy living means in your life!

2. What are your goals for Health Activism in 2015?

My goal is to continue promoting Lyme Disease and nutrition awareness through my blog, speaking engagements, and social media!

3. What awareness event or effort are you most excited about in your condition?

I am really excited because the month of May is Lyme Disease awareness month!  I can’t wait to continue spreading awareness throughout my community and helping others understand what it’s like to live with an invisible chronic illness like Lyme.

4. If you could tell others a few things about your condition and your community, what would you want them to know?

According to LymeDiseaseChallenge.org, “Lyme Disease has been called ‘The Great Imitator’ and can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses.”  Also, “Over 63% of patients treated for Lyme Disease continue to suffer symptoms that can be debilitating,” but “fewer than 50% of patients with Lyme Disease recall a tick bite or any rash.”

5. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?

My advice would be to only begin the health activist journey if you are truly passionate about it and want to dedicate a tremendous amount of time and energy to creating awareness and making a change.

 


 

You can connect with Kendal on her website, and her Facebook and Twitter accounts.

 

May 15th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Pam

by WEGO Health

Pam

1. Why did you become a Health Activist? Tell us your Health Activist story!

My mother-in-law became ill in the early 1990’s with a form of multiple system atrophy, a rare, serious neurodegenerative disease which took her life in 1998.  Very little was known about the disease back then and my own search for more information about it led me to help others who were also seeking answers.   I’ve been a leader of online support groups since 1995 where I have helped countless patients and families read more »

May 14th, 2015

Raising Awareness #HAchat

by WEGO Health

Check out the latest from this week’s #HAchat. What do you think consists of an effective awareness campaign? Scroll through Tuesday’s chat to see what participants had to say.

 

Bu13EAPIMAArNaM

 

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May 13th, 2015

Winner! Fourth Annual WEGO Health Activist Awards – Megan

by WEGO Health

Check out what Megan, the winner of Best in Show: YouTube, has to say about her health activism and what she’s looking forward to in 2015! 

Sara

 

1. Why did you become a Health Activist? Tell us your Health Activist story!

I was diagnosed with a form of Inflammatory Bowel Disease called ulcerative colitis (UC) at two years old. The pain and discomfort is something that I will always remember. Some of the very first memories that come to mind are the hospital visits.  My colon was removed and a J-Pouch was created with a temporary ostomy due to severe UC. The J-Pouch lasted for most of my life until my freshman year of college and that is when rocks hit the windshield. The J-Pouch developed a fistula, which lowered my quality of life. My body was becoming very weak and as a result my rib cage could be seen. The only option that would give me relief was an ileostomy.

Ostomy surgery itself is very scary. People that undergo this procedure are usually scared of the surgery itself but they don’t think about the aftermath. Surgery is just the first hurdle. When I woke up from surgery and looked at my wonderful stoma, I thanked it for saving my life. It was my savior. Before surgery, I thought that there was a one size fits all ostomy appliances that everyone wore. That was dead wrong. After the hospital stay, I went back home with a stoma nurse visiting me every few days. That is when I found myself drowning in ostomy choices.

The research engulfs every moment of my spare time just to find the right product to fit my body. There isn’t an Amazon reviewer tool that an ostomate could use to find the right product. That is when I got the idea for making a YouTube Channel dedicated to ostomy product reviews. Thus, The Front Butt YouTuber Channel came into existence to help explain products to fellow ostomates.

If someone asked me back in 2013 where I would be now, there is no way I would dream that my life would be this amazing. People from all over the world send me messages just to share their stories and talk about ostomy stuff. It’s quite humbling.

 

2. What are your goals for Health Activism in 2015?

2015 should be a great year. The Front Butt YouTuber Channel has gotten a few amazing upgrades such as a new video recorder, clear microphone and branding. I hope to be working with a few ostomy companies to roll out more ostomy reviews as well. I also hope to add more vlogs so people can see how cool ostomies are in real life.

My main goal in 2015 is to reach outside of the ostomy community to educate people on IBD and ostomies.

 

3. If you could tell others a few things about your condition and your community, what would you want them to know?

Inflammatory Bowel Disease can be a life crippling illness. Some people can’t even leave their house or hospital because of the horrible pain it gives them. Some of us are lucky enough where surgery can help IBD symptoms subside. Ostomies shouldn’t be looked at so negatively. My ostomy saved my life and gave me the chance at a “normal” life as well. The IBD/Ostomy community is HUGE. Many people have IBD and/or an ostomy and love to share their stories. No one should ever feel alone, that is what the community is here for.

 

 4. What advice would you give to patients and/or caregivers just beginning their Health Activist journey?

Shoot for the stars! Even if someone’s health activism is small, it helps. If we just talked to one person about an illness or a surgery then that is one more person that is educated. Don’t be scared if you stumble, just get right back up and don’t look back. Speaking for someone who can’t do it for themselves is a wonderful gift. The most important thing is to be yourself. By being yourself, you will attract people because it creates trust on a whole different level.

 


 

You can connect with Megan on her YouTube, Twitter and Facebook accounts.

 

May 12th, 2015

Cushing’s Disease Blog Challenge Highlight

by WEGO Health

Cushing’s Disease bloggers were prompted to write for the 30 days of April during the Cushing’s Disease awareness challenge! Check out these blog posts from three Cushing’s Disease Health Activists to learn more about their experiences.   cushingsimage   read more »