February 3rd, 2016

ICYMI: February #HAChat

by WEGO Health

Hi everyone! February 2nd was our #HAChat ! It was a fantastic success. Shout out to our host Jen Thorson who lead an incredible discussion all about heart health.

Below is a recap of the #HAChat so keep reading and remember to join in on our next #HAChat in March!

 

 

February 1st, 2016

Parenting Consistently with an Inconsistent Disease

by WEGO Health

Hi everyone! Sharon Coyle-Saeed is back with her monthly blog post! Keep reading below, and look for her posts at the beginning of each month!

Parenting Consistently with an Inconsistent Disease

By Sharon Coyle-Saeed

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Prior to my health taking a turn in 2011 with more bumps than a rollercoaster ride, I was a proud , regal, and ready to pounce,  “tigermom”  with a tendency to hover in my side role as  a “helicopter parent” to my 6 and 9 year old sons.  Upon decluttering my closet this past month, I found a calendar from 2010 which had no less than five of their activities jammed into each day. A typical day would have a check list like this. Library Story time, check. Volunteer at the elementary school, check. Make interesting and balanced fresh meals daily, check. Laundry, iron and hang clothes by color and fan out the arms, check. Art lessons, check. Piano lessons, check. Magic lessons, check and karate (both at different times for each child as they were at different belt levels), check.

Also, both of my children were signed with a New York City modeling agency.  Which meant, at a moment’s notice, I switched my hat off from Treasurer of the PTA to stage mom. I still recall the days of picking them both up from school, and plopping them into a double sit and stand stroller while buying train tickets for NJ Transit, getting out at Pennsylvania station, and walking several blocks to their modeling shoots while making sure they were fed snacks, water and utilized their down time reading books that challenged their Lexile range.

I supplemented their studies at home with Kumon workbooks and any homeschooling activities I could get my hands on. Every moment was a teaching moment. The walls of our kitchen and living room were filled with addition and multiplication posters and maps of the world.  We even had a title for our home school and a theme song, “Elder Elementary,” named after the street where we resided.

Until one day, I had a pain which kept gnawing at my insides. I was diagnosed with peritoneal inclusion cysts. They were the size of two grapefruits resistant to aspiration, surgery was strongly suggested.  “It will be an in and out surgery,” they said. “You will be in for only 24 hours,” they said.  On June 6, 2011(my personal doomsday), I had a surgery which ended up in another surgery and a whole summer spent at Mount Sinai Hospital. I was released with a PICC line, TPN and a life that has never been the same since.  From 2011 till today, I have spent 50% or more time in the hospital. 2016 was supposed to break this trend. I hate to admit, but I am typing this blog piece from the hospital.

What was this tigermom who could out tiger the fiercest amongst them to do? Slowly but surely, I had to give up control. Unfortunately, activity after activity was dropped for no one was able to take them to and fro.  My sons primary after school activity became visiting me in the hospital, learning where the cafeteria was and eating way too much candy from the gift shops.

I had to let go of being the strict “overscheduler” and transitioned into the “lenient parent”, “the good cop” or “the all you need is love” mom. I did not have the heart for the short amount of time I was around them to bark out orders. So, I didn’t. Bedtimes that were a strict 8pm turned into a cuddle fest to whenever the heck they fell asleep. You don’t want meatloaf for dinner and rather have pancakes and fries? Why not? I think you are getting the picture.

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Zip forward to 2016. My sons are now 13 and 10. A few weeks ago, I had to step back to assess what is really going on here.   It could very well be the age, although I think there is more to it than that. Dare I say, they both have a tendency to sass back a bit? My husband and I tried to overcompensate for what we both felt was a very unfair and unfortunate web they got tangled up in. This led to the start of our sons developing some traits of Willy Wonka’s character, Veruca Salt and we all know she turned out to be a bad egg. I say the start of because I felt that all was still not lost. These are good kids who were craving consistency, discipline and some bad cops.

Last week I called a family meeting. I took the lead in the conversation and like parched nomads sipping water in a hot desert, I could see my sons eyes looking at me with a sense of relief.  I almost heard their souls call out softly, she is back and it was then I realized, they didn’t need less consistency when inconsistency came flooding in, they actually need more. We spoke about what extra activities they will pick up, the expectations on their classwork, the chores around the home they will do and most importantly, showing respect to their parents, each other, and elders.

Today, when my eldest son came to visit, I was curled up in a ball of pain. I did catch out of the corner of my eye him giving up his seat to make room for my mother to sit down. He listened to my words the other night and was putting them into action. I said to him, “I really like the way you just gave your seat up for your grandmother.”  It was then I knew that it is not too late and the kids will be okay. Just because I am inpatient, doesn’t mean I only need to be the cuddle and snuggle parent. I can also step up to the plate and take some of the bad cop away from their father who really kicked it into high gear a few years ago.

On the positive, my children have gained a lot from this experience of having a chronically ill parent. They have greater empathy. They also are extremely independent. They both wake up in the morning on their own, shower, brush their teeth, get dressed, make their own breakfast and walk out to the bus stop. I think my favorite story to share is from Christmas of 2011. I was hospitalized from right before the holidays up until the first week of March. They both insisted on not opening their gifts till I was home. A beautiful lesson of delaying their own gratification. Very tough for adults and proud that they both grew in this self-actualizing moment as children.

I don’t think I will ever go back to the fierce tigermom. I have changed my stripes. Nor will I go back to let them do what they want mom. Children need direction, support and guidance.  A balance between the two in this imbalanced unpredictable world of chronic disease seems to fit just right.

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Author Bio:

Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:

Sharon 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. 

 

January 28th, 2016

Thyroid Awareness Month: Learn More from Joyce Paul

by WEGO Health

Common Thyroid Disorders and Their Treatments

By Joyce Paul

Joyce

 

The thyroid and the hormones it produces play an important role in regulating the body’s metabolic rate and the formation of bones. Disorders of the thyroid can have drastic effects on a person’s health and physical appearance.

In general, thyroid disorders may be grouped into 3 types. These are:

 

Hyperthyroidism

The first type of thyroid disorder is hyperthyroidism or the overactivity of the thyroid. This condition affects about 1% of the total US population. The disease is characterized by the overproduction of thyroid hormones T3 and T4, causing the processes affected by these hormones to speed up. Among its symptoms are fatigue, the presence of goiter, heat intolerance, irregular and rapid heartbeat, mood swings, and weight loss. Depending on a number of factors, such as the patient’s age, thyroid hormone levels, and the cause of hyperthyroidism, a patient may be recommended by the doctor to undergo any of the following treatments:

  1. Medication – To combat the effects of excess thyroid hormones in the body, the patient may be recommended to take anti-thyroid medicine. It usually takes about 12 weeks for the medication to make a noticeable difference. The treatment typically lasts for a year.
  2. Radioactive Iodine Treatment – Radioactive iodine is used to permanently destroy the overactive thyroid. The treatment renders the body unable to produce its own thyroid hormones, a condition called hypothyroidism.
  3. Thyroid Surgery – Thyroidectomy or thyroid surgery refers to the partial or full removal of the thyroid gland. Just like radioactive iodine treatment, thyroidectomy leads to hypothyroidism.

 

Hypothyroidism

The second type of thyroid disorder is hypothyroidism or the inactivity of the thyroid and the lack of T3 and T4 hormones in the body. Compared to hyperthyroidism, hypothyroidism is easier to manage and has an opposite effect on the body. Slowed down metabolic functions may manifest in symptoms like fatigue, shortness of breath, and weight gain; the patient may also have poor appetite, hearing, and concentration. Long-term thyroid hormone replacement therapy is needed to treat the symptoms of hypothyroidism. Some thyroid hormone replacement programs also include exercise and nutrition regimens to help curb the physical changes caused by the disease.

 

Growths and Cysts

The third and final group of common thyroid disorders is made up of growths such as goiters, nodules, cysts, and cancers.  A vast majority of the diseases under this category do not cause signs or symptoms until the growth is big enough to impede breathing and swallowing. Still, people at risk for these conditions must remain vigilant so the condition can be detected and treated at the earliest time possible. Common treatments for diseases under this group include:

  1. Radiation Therapy – Typically used to treat thyroid cancers, radiation therapy may come in the form of external beam radiation, radioactive iodine treatment, and internal radiation where a radioactive seed is planted inside the tumor.
  2. Surgery – Thyroidectomy can be used to treat obstructive thyroid growths, cancers still contained within the thyroid, and hyperthyroidism. It is also a viable treatment for pregnant women who have thyroid growths.
  3. Hormone replacement therapy – Treatment for thyroid growths and nodules typically render the body unable to independently produce thyroid hormones. Hormone replacement therapy is used to address hypothyroidism. It may also prevent cancer cells from returning, and slow the growth of cancer cells still in the body.

 

 

Author Bio:

Joyce Paul is a marketing professional from Genemedics Health Institute. Her interests lie in health and nutrition. She writes about these topics and contributes to different health and wellness blogs in her free time. She also participates in awareness campaigns for HIV and Cancer in her community. Her advocacy is to help people know more about fighting these diseases. Loves to cook, bake and take long walks with her 4 dogs (two Belgian Malinois, a Golden Retriever and a Shih Tzu).

 

January 19th, 2016

WEGO Health Guest Blogger: Nate Rich

by WEGO Health

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Diet Tracking With MyFitnessPal – You Are What You Eat!

By Nate Rich

If you would have asked the 500+ lbs. version of Nate Rich to measure and record everything he ate and drank, he would have thought you were crazy. Well, sometimes the “crazy” way is the right way, and it certainly was for me. Remember, Earth being circular was “crazy” too. To most people, the concept of recording everything you eat and drink sounds ludicrous. However, to fitness fanatics and casual dieters alike, taking detailed notes on the caloric value is a huge aid to maintaining a specific diet plan. Perhaps equally important as the amount of calories consumed is the specific macronutrient breakdown. Although there are many ways to calculate you food and beverages, my absolute favorite is digitally with a program and website called MyFitnessPal.

Let’s go back to 2009 when I weighed over 500 lbs. After the devastating loss of my Dad from heart failure, who meant everything to me, I decided to get serious about losing weight and would not stop until I succeeded. I went from drinking a couple liquid diet shakes a day (sub-500 calories per day), to low carb Atkins-style dieting, to 10 other random diet concepts. The road to losing 300 lbs. was full of failures, but each failure led to another option. One of those options was the concept of recording what you ate and drank, so you could actually grasp the caloric value of everything, and understand your macronutrient intake. At first, it just seemed like a bunch of work for no reason, but the more I got into it, the more I learned and was able to tweak my diet. Some days I would feel starving, and others I would feel almost bloated. Without a record of what I ate (and at what time), I really was just guessing as to what could be the problem.

Being able to grasp what you eat, how much you eat, and how it affects your weight, energy levels, and brain functionality (seriously!), is the primary reason why I believe recording your diet is of use. You have the opportunity to realize your “low carb diet” is actually a “high carb diet” because you thought Sweet Potatoes were considered vegetables. Or, you have the opportunity to analyze your diet and find out that perhaps you are so bloated recently because you’re favorite “diet condiment” is actually loaded full of sodium unexpectedly. We all want to pretend like we know everything about food and diet, and that “I’m not stupid enough to eat something with so much sodium” but I am telling you certain things fall through the cracks that can create a roadblock for your goals. Some of the biggest surprises for people are cream in your coffee, oil while cooking food, carbohydrates in everything (always a surprise), and the biggest one is the sneaky grams of sugar that are everywhere.

My personal preference for tracking my diet is MyFitnessPal. Nowadays, I do not use this religiously every single day while I am maintaining my body weight, but I bust it out any time I see myself gaining weight and want to get serious again. It is a great “check yo-self before you wreck yo-self” tool (Lol, yeah. I just wrote that).

MyFitnessPal is a website with applications for all smartphones. With ease, you can record your body weight, food intake, beverage intake, and even exercise routine. There is a seemingly infinite list of foods, drinks, supplements, and condiments in their standard database that you can search for while adding your meals. If somehow your specific item is not in their database, you can add it with ease. It really is the best diet tracking database I have used.

Tracking your macronutrients is highly undervalued in the mainstream dieting approach. Of course the caloric value of foods matter, and of course the total amount of calories you eat matters. However, it really does matter how many grams of protein, carbohydrates, fat, fiber, and sugar you are consuming. I have seen people tell me that they are on a low-carb diet, but they are eating a TON of vegetables throughout the day. This is not a bad thing, however their vegetables of choice were carrots which are heavy in carbs (sugar). On a low-carb diet, you are relying on ketosis to lose fat, which requires very low-to-no carbohydrates. So, without tracking your macronutrients you may not realize that all of your vegetables are derailing your low-carb diet plan!

Another great feature is that there is an endless history so you can track your progress over long periods of time without losing any information. Let’s say you’ve gained some weight, but you remember a time last year when you were your leanest and felt your best. You can simply look back to that time by searching date or body weight, and peek into what exactly you were eating and drinking during that time. It can be a great way to get yourself back on track.

Overall, I personally use MyFitnessPal, and highly recommend it for anyone. Even if you aren’t trying to lose a bunch of weight, it is still a great way for people to actually learn and understand what they’re eating. It is mostly true that you are what you eat, and tracking what you eat is a great way to manage your diet and body goals.

 

Author Bio:     Hi, I’m Nate Rich, and I weighed 525 pounds about seven years ago. Today, I am 300 pounds lighter, a body builder, a world traveler, and extremely successful in business and in my personal relationships. What happened between then and now is a story of total body and life transformation, which began in the face of extreme adversity. I conquered that through determination, motivation, and my own personal routine of fitness and living healthy.

 www.builttoberich.com

Twitter & Instagram: @builttoberich

FB: facebook.com/builttoberich

December 28th, 2015

New Year’s Goals with a Chronic Disease a.k.a. When Things Don’t Go Right, Go Left

by WEGO Health

Here is our January blog post from our monthly blogger Sharon Coyle-Saeed! Remember to check out our blog each month to read more from Sharon. Happy reading!

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New Year’s Goals with a Chronic Disease a.k.a.

When Things Don’t Go Right, Go Left

By: Sharon Coyle-Saeed

Way before it was the “in” thing to do, I was creating vision boards at the age of 7.  I knew exactly what I wanted to do in my life—become a Broadway star.  By the time I was a senior in high school, I had my life mapped out step by step with goals broken down into individual to-do lists, and timelines. With new headshots in hand, signed with a manager and finishing up playing the lead in the musical, “Gypsy,” I was ready for my close up Mr. Demille.  My whole world came crashing down the summer after I graduated high school, when I was struck with severe Inflammatory Bowel Disease.  After major surgery, I remember waking up from a medical coma and still writing a to-do list. It read something like this. “Get catheter out, get breathing tube out, get drainage tubes out, get staples out, get NG tube out, get picc line out and then, get the heck out.”

What about those life goals though? What about the theatrical endeavors?  Well, to be completely honest, I was crushed. Losing my colon was not as devastating as the loss of my first love—theater.  It is very challenging to speak about the death of that part of me till this day.  However, being raised as a tomboy with the mantra, “toughen up,” I brushed myself off, and got back into the saddle once again, and again, and again, and again. I would like to think this is resilience. Although, it is probably that I inherited my father’s stubbornness gene. Through the years, I learned how to adapt and adjust. Of course, I get disappointed, but I don’t let it get me down. 

Every year, for the pending new year, I have the audacity to make very specific goals, knowing that at any moment, an obstructed bowel resulting in an elongated hospital stay, may disrupt these dreams.  No wait, they are not dreams. My resolutions are one a very detailed word document, as if I am responding to a Fortune 500 company RFP (Request for Proposal).  Let me explain further.

They are in five categories: physical (tone up, eat right), tangible measurable ones (like learning Spanish, cleaning clutter, or going to a conference), relational (spending time with friends and family, helping children achieve their goals), emotional (laugh more, don’t sweat the small stuff), and spiritual (be in the moment, pray more). Every year, I go all in full force thinking and believing I will reach ALL of these goals. Last year, I created 76 of them! Yes, you read that right, 76!!!! Guess what? I actually reached many of them. Thing is, if you aim higher than you think you can, you will attain more than if you set the goals too safe. So, go for it! Write down anything and everything you can think of doing and becoming!  Why not?

Why not? Because I have a chronic, and sometimes serious disease Sharon, and what if I am stuck in the hospital half of the year? This rang true for me this year. Okay fine for the past four years.  I hate to even write it, but this year, I was in the hospital for 7 months out of 2015. Yes, there were some goals that I had to adjust.  Like going for my Master of Social Work is going to take me 3 years, not 2. I was scheduled for Reiki Master training in October, and finally did it in December, and some goals I just plain old missed like, “stay out of the hospital.”  However, I do believe that by having this road map, it gives some sense of direction and purpose when everything else seems to be crashing in around me.

What about the theater goal? My lifelong dream? Sometimes when things don’t go right, we can go left. For a few years, I directed and choreographed a show for over 300 children at my son’s elementary school which was very gratifying, have taken vocal lessons and belt out tunes while driving, and did a musical fundraiser to benefit Inflammatory Bowel Disease.  Some goals we can adjust, some goals we grow out of, and many we can accomplish! If you can conceive it, and believe it, you can achieve it!

As the year comes to a close, I start to create resolutions for 2016! Of course, at the top of my list is, “stay out of the hospital.” BRING IT ON 2016!  I am so reaching that goal this year! What is on your list?

 

Author Bio:

Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:

Sharon 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. 

December 4th, 2015

ICYMI: #HAChat

by WEGO Health
December 2nd, 2015

It’s the season of giving! How are YOU giving to your SELF?

by WEGO Health

Sharon Coyle-Saeed’s monthly blog post is ready for you to dive into!

Remember, Sharon is our monthly guest blogger, so make sure to check for her posts at the beginning of every month. Enjoy!

 

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Being a frequent flier at the hospital, I noticed two things which were beneficial in curtailing my recuperation period upon release. The first thing that helped in getting back into action after a long stay of laying horizontal, was to force myself to push through the leg shaking (especially when trying to conquer going up and down the stairs in my home) and MOVE! The next thing that made me feel more human was to indulge in a manicure and pedicure. Let me be more specific—indulging in a spicy, hot, fire engine red manicure and pedicure. It has kind of become my signature go to color.

I am a wife and mother of two sons and come from a lineage of women where sacrificing one’s own happiness for others is not only expected, but applauded. However, taking this one hour not only made me feel rejuvenated, it felt like a means of survival.  I had a flashback of the first time I traveled overseas with my infant. The announcement upon takeoff strongly urged mothers to initially use the oxygen mask before placing it on your child.  At that time, this seemed to go against everything I was raised to believe. However, feeling like a new person walking out of that nail salon, those directions of taking care of one’s self first, finally made sense.

What was working the first 10 years of being a stay at home  “sacrificial lamb” mom, could not continue in this current health crises of intermittent small bowel obstructions from too many surgical procedures resulting in concrete adhesions which placed me as an inpatient 50% of the year since June  2011. Being chronically ill, I knew in order to be functional when I was home, I needed to use the oxygen mask first. In other words, I needed to pamper myself, even in small ways, without GUILT! The key is in that last word! For with guilt, the benefits from the comforting comforts may have a reverse effect.

Although I love manicures and pedicures, I had to find some cost effective every day treatments. Little indulgences which would not break my non-existent bank account. This is when I started the love affair with an item in my home that was always there, but never used—–my bathtub.  My daily pampering or “treatment for a functioning Sharon” starts out like this. I set my phone to the Pandora meditation music station, plug it into my ipod dock, light three candles while saying an intention such as, “may this bath be cleansing of not only my body, but my mind and my spirit,” turn the water on, pour in a handful of Epsom salts, step in, and do a self Reiki for the first portion of the experience. When I drain the tub, I think of all the bad energy, the dirt and the things my body does not need going down the drain. I am then ready to start my day!

I highly recommend pampering for everyone, especially for those like us who are going through a chronic, and sometimes serious disease. Here are some of the ways that others indulge! Can’t wait to read feedback on how YOU pamper yourself! If you currently do not, make it a goal for the New Year! See you in 2016 when I touch upon setting goals—when your health is unpredictable!

“I have an eclectic music collection. When I am in a minor or a major flare, music in my Buddha!”

David Eisikovits, Crohn’s, New York

 

“I pluck my eyebrows. It makes me feel extra good when they look sharp and playing on my Daddy’s piano!”  Danielle Fiorello, BiPolar, Deep Anxiety, PTSD, Suicide Ideation, New Jersey

“I cuddle with my dog.” Shannon Rives, Crohn’s,

 

“Microwaveable unscented neck wrap.” Tina Koelbe-Tko, Diabetes, Chronic Migraines, New Jersey

 

“After a surgery, I like to get some sort of accessory for my Jeep Wrangler.” Ryan Stevens, Crohn’s, Ohio

 

“A hot water bottle or a bag of ice on the back of my neck.” Cheryl Howdyshell, Polycythemia Vera, Virginia

 

“Artwork, coloring, knitting, and playing with dogs.” Peggy Farrelly, Cancer Survivor, New Jersey

 

Author Bio:

Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:

Sharon 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. 

 

November 2nd, 2015

WEGO Health’s New Monthly Blogger: Sharon Coyle-Saeed

by WEGO Health

WEGO Health would like to introduce you to our new monthly blogger, Sharon Coyle-Saeed. Sharon is an IBD health activist. Keep reading to learn more about Sharon and to learn more about what is to come from her. Thank you Sharon!

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I just wanted to introduce myself. First off, I would like to thank the WEGO Health community for giving this opportunity to reach out to all of you!  My name is Sharon Coyle-Saeed, and I am the CEO/Founder of ibdjourneys. ibdjourneys (yes all small caps), is a support group for those inflicted with Inflammatory Bowel Disease and a place for caregivers.  IBD (the two major ones are Crohn’s Disease and ulcerative colitis) is an autoimmune disease that attacks the digestive tract and may also cause extra intestinal manifestations.

I was diagnosed with ulcerative colitis in September of 1990. As I packed my bag with resumes, headshots, tapping shoes and sheet music, I headed into New York City to try my luck at making it as a working singer, actor and dancer. It was my dream, since the tender age of 7 to grace the Broadway stages.  I exhausted my rounds on the New Jersey stages and was ready for Times Square.  All of those dreams were dashed in an instant. As I headed out the door, I was struck with an “intestinal virus”, which never quite left.  A month later, I was dehydrated and 20 pounds thinner. I was put through the ringer of tests and in walked the same Gastroenterologist I use today, who announced, “You have a form of Inflammatory Bowel Disease called ulcerative colitis.”  These words that would become part of my everyday  vocabulary, were so foreign to me then.

From that day in 1990 up until 1992, I was placed on every medical treatment known for IBD in those days.  Nothing worked.  I was rushed up to Mount Sinai Medical Center in NYC for an operation which was not an option. As my large intestine was ready to burst from perforation, I was wheeled into a surgical procedure called a total proctocolectomy(removal of my entire colon),  with J-Pouch formation(bringing down the small intestine as an anastomosis) and a temporary loop ileostomy. After that surgery, I was in a medical coma for about a week’s time and when I came out, my view on the world was somehow changed, but I was not ready to receive the message completely. By the end of that year, my stoma was reversed and since my mother worked at a local college, and I was convalescing, I decided to take some courses before heading back out to be a Broadway star.

On the first day of school, I met the man I would eventually marry and have two children with. My career path took a turn from actress to human resource/store manager of high end retail stores. After having my children through C-section and one was a very challenging birth which was a delivery with placenta abruption, my peritoneum was now a belly filled with concrete adhesions. In 2009, I was diagnosed with peritoneal inclusion cysts. Two environments have to be present in order for these cysts to form—active ovaries and adhesions. I had them both.  These cysts(2 in total) grew to grapefruit size and in 2011, more specifically June 6, 2011, was my “doomsday”. I headed into a surgery which was supposed to be a ‘simple’ surgery….. it was anything but that.

After that surgery, I was rushed back into the operating room a month later, to alleviate strictures that had formed.  From 2011 till this very year of 2015, I have been an inpatient for 50-60% of the year. In fact, I am an inpatient right now while writing this blogpost.

In these past 4 years, I have met many wonderful warriors of not only IBD fighters, but many challenging diseases. I have been asked on many an occasion, “How do you do it? How do you get through long hospital stays? How do you maintain relations with friends, family, your spouse and your kids? How do you remain so positive? “

This blogspot is not only going to be about my journey.  I would like to highlight how everyone else gets through their day! As a featured blog writer, I am going to explore, “How to cope and live purposefully with a chronic (and sometimes serious) disease.”  I will share some of my favorite tips and coping mechanisms and can’t wait to read and hear yours!

Next month, I will focus on pampering! Pampering is indulging in our comfort and needs and YES! This is a necessity when we are dealing with a chronic disease! Get rid of the guilt! You are worth it! I will share some of my favorite pampering indulgences and highlight others that are combatting an illness as well. Just in time for the holidays when we need to take some extra TLC out for ourselves!

Author Bio:

Sharon Coyle- Saeed: Health Activist, CEO/Founder of ibdjourneys:

Sharon 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. 

October 6th, 2015

2015 ePatient Connections Conference

by WEGO Health

ePatient Connections 2015

#ePatCon

 

 

WEGO Health is excited to be a part of the 2015 ePatient Connections Conference that is

happening October 29th-30th in Philadelphia, Pennsylvania.

In addition to some truly inspiring and empowering health activists, three members of the WEGO Health team,  Bob Brooks, the Executive Vice President of WEGO Health, Kristen Hartman, Director of Sponsor Programs, and Kristin Mraz, Community Recruitment Manager, will be there as well!

 
 
 
 
ePatient Connections Conference 2015

 

Overview:  

o   The ePatient Connections 2015 summit focuses on bridging the communication gap between industry leaders and ePatients to establish shared goals in order to enable cross-functional, patient-centric collaboration to improve overall health outcomes and enhance participation in clinical trials.

Day: 

o   Thursday, October 29th – Friday, October 30th

Agenda:

o   http://exlevents.com/epatient-connections-2015/agenda/

Place: 

o   Wyndham Philadelphia Historic District Hotel

 

 

 

October 5th, 2015

Mental Health Advocacy: What’s in It for Me?

by WEGO Health

Gabe-Headshot

 

 

I am a mental health advocate, speaker, and writer. In a nutshell, my job is to publicly speak and write about living with bipolar disorder – the good, the bad, and the ugly. As a speaker, I stand up in front of crowds and talk about very personal things. My history of mania, depression, and hyper-sexuality are all fair game. I once joked that you haven’t made it as a mental health speaker until you tell a room filled with people about your sex life after psychiatric medications.

This kind of work is very difficult. I’ve been publicly shamed, received horrible e-mails, and I’ve even received death threats. Once, someone sent a package of toilet paper to my home and told me I was full of crap, except he didn’t use that word.

I openly discuss the side effects of medications on my sex life, which was an adjustment for my wife. I also discuss many of the mistakes I made in the past, from drug use to infidelity, and everything in between.

My family has had to adjust, as well, and as I gain popularity, they have to adjust more. Given society’s desire to blame mental illness on poor upbringing, this doesn’t always paint them in the best light.

Before any of you jump on the “he’s doing it for the money” bandwagon, I’ll gladly show you my bank statements. I do get paid for what I do, but money isn’t the primary motivator. I spend more than I make because things like travel, internet service, and business cards aren’t free.

I didn’t wake up one morning and set out to be a mental health speaker and writer. It just sort of happened. My first step was volunteering for a local mental health charity. I participated in their local fundraiser, helped stuff some envelopes, and eventually they asked me to tell my story at a luncheon they were having.

I was terrible at it. I was nervous, practically read from the sheet of notes I carried, and I was shaking so bad it was pitiful. But I pushed myself through and, when I was done, the room erupted with applause and I got a standing ovation. To say I was shocked was an incredible understatement. It was at that moment that I was hooked. If my story – my life – could have that much power, then I needed to share it.

There are a hundred little reasons. When I was newly diagnosed, I could have used some inspiring stories of people who reached recovery. When I got a little better, I started going to support groups that were run by volunteers. So now that I am doing well, I want to give back. I want to make sure that I am there for the people who come after me, because people were there for me.

I do it because I’m good at it and because I love it. It makes me feel like my experiences weren’t entirely meaningless, that my suffering has some sort of benefit to the greater good.

But mostly, I do it because if my experience can make life better for even one person, then the pain I endured had at least a little positive meaning.

And that makes me happy.

About the author:

Gabe Howard is a professional speaker, award-winning writer, and mental health coach who battles bipolar 1 and anxiety disorders everyday. Diagnosed in 2003, he has made it his mission to put a human face on what it means to live with bipolar disorder. Gabe was the recipient of the 2014 Mental Health America Norman Guitry Award, placed second in HealthCentral’s LiveBold competition, a Psych Central 2014 Mental Health hero, was a 2015 WEGO Health Awards Finalist in the Health Activist Category, as well as received a Best of the Web – Blog award. To work with Gabe please contact him via his website at www.GabeHoward.com or e-mail Gabe@GabeHoward.com.