13
Jun

ICYMI: June #HAChat Sharing Our Journeys & Information Online

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

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

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

 

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


JulieCerroneHeadshot

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

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1
Jun

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

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

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

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

By Sharon Coyle-Saeed

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

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

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

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

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

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

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

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

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

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

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

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


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

25
May

Hepatitis Community Approaches Historic Landmark

It’s important that we stay up to date on all the causes our Patient Influencers are fighting for.

We have an amazing group of Hepatitis Influencers who we know are out there trying to forge ahead the best possible health care landscape for patients.

Patient Influencers like, Karen Hoyt, named a top 2015 Healthline Best Hepatitis C Blogger, Lucinda Porter, who’s written 2 Hepatitis C books, and Connie Welch, who was a HealtheVoices 2016 Patient Advisor.

Today we bring you a guest post from Raquel Peck, CEO of the World Hepatitis Alliance on some exciting news!

Elimination Of Global Killer Within Arm’s Reach

By Raquel Peck, CEO of the World Hepatitis Alliance

World Hepatitis Alliance _ Raquel Peck

A decade worth of advocacy efforts, awareness raising and highlighting the global impact of viral hepatitis could pay off this week as WHO Member States will make the most important decision on hepatitis to date.

At the 69th World Health Assembly in Geneva (23 – 28 May), 194 countries will decide whether to adopt the WHO’s first ever Global Health Sector Strategy for Viral Hepatitis (GHSS). The strategy represents a pivotal moment for viral hepatitis as it sets a goal of eliminating hepatitis B and C by 2030. To achieve elimination, the strategy outlines a set of prevention and treatment targets which, if reached, will reduce annual deaths by 65% and increase treatment to 80%, saving 7.1 million lives globally by 2030.

With vaccines and effective treatments for hepatitis B and a cure for hepatitis C now available, elimination of viral hepatitis is feasible and achievable. The only thing standing in our way is political commitment.

Viral hepatitis is one of the most significant public health threats of our lifetime, with 10 million new infections and 1.4 million deaths each year, globally. Despite this, the disease suffers from a remarkable lack of awareness and political priority. The adoption of such strategy should be a no-brainer (after all, we have vaccines and effective treatments for hepatitis B and a cure for hepatitis C making elimination possible) but greater political will and recognition are needed to scale up interventions.

Last year a key step was taken when governments of the world adopted the Sustainable Development Goals (SDGs), which included a target of combating viral hepatitis. Although this signaled a much needed commitment, hepatitis still remains hugely under-recognised compared to other disease areas and this is made clear in the SDGs, in which commitments were made to end HIV/AIDS, tuberculosis and malaria and merely combat hepatitis. In response, the hepatitis community convened at the World Hepatitis Summit 2015 and endorsed the Glasgow Declaration on Viral Hepatitis, calling on governments to develop and implement comprehensive national hepatitis plans to drive action toward the elimination of viral hepatitis.

We, the hepatitis community, must convene again as we approach a landmark moment in the history of viral hepatitis.

We are calling on governments to support the adoption of the strategy and its targets. If governments reject the strategy, they will be perpetuating the neglect hepatitis has been subject to for years and turning their backs on saving 7.1 million lives. They will also be ignoring one of the key commitments of the SDGs, which is that no one should be left behind, a commitment so apt for people living with viral hepatitis, many of whom are marginalised in one way or another. It’s time we properly address viral hepatitis and rid the world of these cancer causing agents that burden so many people, once and for all!

To find out more about the strategy, watch our animated video which also introduces NOhep, a global movement to eliminate viral hepatitis, to be launched at this year’s World Hepatitis Day (July 28)


World Hepatitis Alliance _ Raquel Peck HeadshotRaquel Peck is the CEO of the World Hepatitis Alliance (WHA), an international umbrella organisation of more than 230 hepatitis groups which she helped to establish in 2007 because viral hepatitis had been inexplicably neglected for so long. Before being appointed CEO, Raquel worked as the International Relations Director for WHA and was part seconded to the World Health Organization (WHO) after the Global Hepatitis Programme was established to help the team in Geneva with their communications strategy. Previously to this she was employed as a Public Relations Coordinator for the only UK national charity dedicated to hepatitis C – The Hepatitis C Trust. Follow her on Twitter @RaqPeck

24
May

WEGO Health’s Lemon Face For PCOS

Here it is folks, the tweet that started it all.

WEGO Health was challenged to show our lemon face for PCOS awareness and here at WEGO Health, we’re ALL about helping spread awareness.

What is #LemonFaceChallenge?

The #LemonFaceChallenge for #PCOS (polycystic ovary syndrome) is to raise awareness and funding to end the silence about this syndrome. PCOS affects one in ten women worldwide, but nobody is talking about it. Now, that’s a SOUR DEAL!!!

How do you participate in the#LemonFaceChallenge?

By biting into a lemon, and showing the world your lemon face, we’re showing that PCOS is a “sour deal” that needs immediate change. For all the details, check out Ashley’s PCOS Gurl blog, but here are the essential steps:

1. Cut a lemon wedge and bite into it

2. Take a pic/video biting lemon

3. Post to your timeline or feed

4. Challenge friends and family

So was WEGO Health up for the challenge?!

HECK YA WE WERE. We always are.

At a Monday morning meeting, a few of us decided to take the challenge and show the world our lemon faces! Here’s what ensued.

First, we took a nice pic with our lemons

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Second, we bit into those lemons!

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Then we all had some great reactions. . .

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Now that a few of us here at WEGO Health took the challenge, who’s up next?!

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Thank you for helping to spread awareness Ashley! Let’s change this sour situation for the millions of women out there afflicted by this syndrome.

Learn more about the project from PCOS Gurl’s Blog and make sure to sign up for the thunderclap campaign to help spread awareness.

SHOW US YOUR LEMON FACE!


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

 

 

 

 

18
May

Girls With Guts Turns Niagara Falls Purple!

Here at WEGO Health, we’re always inspired by what Patient Influencers are doing out there in the world!

The following guest post is from Jackie Zimmerman, an avid IBD and MS activist. Along with 4 other awe-inspiring women, Jackie founded Girls With Guts, an organization to empower girls and women with Inflammatory Bowel Disease (Crohn’s Disease & ulcerative colitis) and ostomies to share their stories of confidence and to promote self-esteem.

Not only have they provided amazing resources and events for IBD females, but this year they’ve taken it one step further and stepped up to help light up the world for IBD Day.

Learn more about this feat from Jackie herself!

World IBD Day | Girls With Gut's Turns Niagra Falls Purple

May 19th is World IBD Day, the one day a year that all 5 million Inflammatory Bowel Disease (IBD) patients band together to raise awareness and gain support worldwide! This may not seem like a very big deal. Sure, lots of disease communities have important days throughout the year, right?

But this event is unique because this year there is a common goal among everyone in the IBD world; light up landmarks purple.

Purple is the color of the IBD awareness ribbon and the universal sign for IBD awareness, so it only makes sense to light up these landmarks in our community’s color.

Girls With Guts Summer 2015 Retreat

Girls With Guts Summer 2015 Retreat | Click the photo to learn more about the Girls With Guts Summer 2016 retreat.

I work for a non-profit called Girls With Guts, we support women living with IBD and ostomies, and we were approached by two of our clients with a great idea. Light up US landmarks. This was such a brilliant idea that I had never thought about, and as it turns out, no one else was really thinking about it either.

Various other countries around the world have been lighting up their landmarks for May 19th for years, but not America. It seems as though we’ve historically dropped the ball.

When we received that email from those clients with this idea, to help support this worldwide initiative, Girls With Guts jumped all over it. We were so excited.

Shockingly enough, it is relatively easy to apply to various landmarks to get them to support your cause, which makes it even more bizarre that it has never really happened here in America before. So Girls With Guts sent out a few applications for various US landmarks and after a few months of waiting we received a very exciting email. Niagara Falls would be supporting World IBD Day by lighting up the falls purple on May 19th! While this is a victory for Girls With Guts, this also feels like a giant victory for the IBD community worldwide. Not only are we getting awareness on World IBD Day but we’ve also now managed to join other IBD organizations around the world in solidarity for our cause. America is now on the map!

There is a strong sense of pride that goes along with knowing that Niagara Falls will glow a bright purple light on World IBD Day, as it represents all of the patients around the world who live with IBD.

On this one day, we can all step out of the shame and isolation associated with IBD, and know that our IBD family around the world is standing strong together. Knowing that this is a global effort makes it feel so much bigger, so much more important, and so much more meaningful. This year we only heard back from Niagara Falls, but next year we’ll be hitting the ground hard on other landmarks to get them to support our cause.

If you’re a patient involved in a disease community, I’d encourage you to reach out to national landmarks on your important days throughout the year.

Sometimes you will need an established organization to back you, but all that is really needed is the idea and the drive to get it done. In most cases there is no charge to you or your organization. It’s a very cost effective way to raise awareness for causes close to your heart!

You never know who you will reach and the lives you might change.


 

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Jackie Zimmerman is an ulcerative colitis and multiple sclerosis patient and the founder and Executive Director of Girls With Guts. Since her diagnosis she has been an avid blogger and patient advocate working hard to empower patients and raise awareness. She spends her free time with her two dogs and playing roller derby.

Follow her on Facebook and on Twitter!

10
May

What Would You Tell Yourself?

Knowing what you know now, What would you tell yourself when you were first diagnosed? | WEGO Health Guest Blog Claudia Schmidt, My Left Breast

Sharing what she would have told herself about the disease before she was diagnosed, Claudia recently wrote the following post as an open letter to herself about breast cancer. By sharing your learnings, you can help anyone else who might be going through a similar experience. She encourages all patient influencers, across all disease states, to write an open letter to themselves.

Today, Claudia and WEGO Health would like to pose this question to you:

Knowing what you know now . . .

What would you tell yourself when you were first diagnosed?

 

This is Claudia’s open letter.

An Open Letter to Myself About Breast Cancer

Claudia Schmidt, Breast Cancer Patient Influencer | My Left Breast

It is now a full 6 years since my diagnosis and subsequent treatment for breast cancer and I no longer feel a burning need to write about that time of my life. The fact that I’m 6 years out has somewhat released me. I don’t feel as strong a connection to breast cancer anymore and in fact am anxious to move on and away from it; to stop thinking about the past and focus on my future.

But, I was recently requested to write an open letter to myself about breast cancer, by Cure Forward. The mission of Cure Forward  is to encourage patients to learn as much as possible about their treatment options, and to play an active role in helping them learn about, and access, precision medicine options.

So, I’ve been pondering what I would tell myself way back in February of 2010, when I first found the lump in my left breast.  And because I’m a big list maker, I made a list of what I would tell my pre-breast cancer self about how to manage the journey I was facing:

  • Being diagnosed with breast cancer is very scary. But don’t let your fear compromise your ability to take action. Listen very carefully and immediately write down everything your doctor tells you, you won’t remember it later on, trust me. Take a lot of notes and keep them in a notebook that will fit in your pocketbook so that you can bring it with you. In addition, keep copies of all your procedures and pathology reports in that notebook because you’ll refer to them many times over the next year as you’re on-boarding every new doctor you wind up seeing. In this day and age, it’s unrealistic to expect your doctors to remember all the details of your treatments, and you’ll need to be your own healthcare advocate, so keeping all this information in one place will prove to be very helpful.
  • Ask a lot of questions. If anything is unclear (and much of it will be unclear) ask your doctor to explain the details to you over and over until you understand. That’s part of their job, to explain the details to you in laymans terms and if you’re not comfortable asking them, or feel you’re not getting enough information in an accessible manner, find another doctor.
  • Bring someone with you to help keep you calm and occupied during the waiting. I found that when I brought someone to an appointment with me, they would often remember very different details than those that I focused on. At the appointment where I was first diagnosed, my husband, the finance guy, came with me. Throughout the entire discussion with my breast surgeon, he was taking notes and at the end of her explanation, he held up his paper to show me a little grid of dates that he had jotted down. His chart showed that if all went as the doctor expected, we’d be done with all the treatments before the end of the summer.  It was very reassuring to see it in writing on a piece of paper and kept me focused on the fact that there was an end in sight.
  • I was very lucky that my hospital had a dedicated breast care coordinator resource. I was given her name by my radiologist and was able to meet with her within a day after my lump was found. She was immensely helpful with a great personality and straightforward approach. If your hospital has a breast cancer coordinator, get to know her! Mine immediately recognized that I was the kind of person who likes to read and do research, and when I left her office I was loaded down with books, pamphlets and names of websites to research information for myself.
  • My hospital breast cancer coordinator also told me about the Oncotype DX test which helps women with early stage Estrogen Positive invasive breast cancer determine their treatment options. The test looks at 21 genes from the breast cancer tumor and uses those markers to determine if the patient will benefit from chemotherapy, as well as the likelihood of distant recurrence (or metastatic cancer). Because my tumor was small and early stage, my surgeon thought that I might not even need chemotherapy. After my Oncotype DX test, the results showed that I actually had a very aggressive tumor with a chance of recurrence which indicated that I would benefit greatly from chemotherapy. Of course, I wasn’t happy about having to have chemo, but the fact that the test was done on my specific tumor, using my own genetic markers at least validated the decision.
  • My hospital breast care coordinator also helped connect me with the hospitals BRCA genetic testing team. No one in my immediate family had breast cancer but I have 2 older sisters and a daughter and was worried that perhaps we had a familial genetic predisposition to breast cancer which would have meant that they were also at risk. The simple and painless BRCA test came back negative, with no evidence of a genetic predisposition which is still reassuring to me now, 6 years later.
  • For me the best way to manage my fears during this time was to gather information and research all my options. Knowledge is power for me, and the more I know, the better decisions I can make. So I would encourage my pre-breast cancer self to learn as much as I can through reading, researching and talking in detail with my health care team. One of my favorite sites for information was and continues to be, breastcancer.org.
  • Find the best medical team you can and if possible, try to find a treatment center that is relatively close to your home. If, like me, you’re going to have multiple surgeries, chemotherapy and reconstruction, you’ll heal better if you’re able to recuperate in your own home after treatments and procedures.
  • Keep positive. Yes, I know it sounds pollyana-ish and you may not feel upbeat much of the time, but try not to dwell on the negative. You need to focus your energy on healing and getting through this. Cancer is a roller coaster ride, so learn to trust that if there is a dip there will eventually be a rebound.
  • Find the right people to become your rocks, the people you trust to listen to anything you have to share. I realized pretty early on that if I couldn’t talk about my fears to someone other than my husband and kids, I wouldn’t be able to handle the panic and fear that I was experiencing. So I found a core group of friends who I could let it all out with. They were the ones I would call when I was really scared; the ones I could call up and say, “I don’t know if I can handle this,” on those very bad days. I chose these 3 because I knew that they would always be supportive, would listen and then would gently but firmly say, “Of course you can, it’s going to be really horrible, but you’re going to get through it,” and would make me laugh, after letting me cry my fears out.

I hope that this information will help anyone else who is going through the experience of a breast cancer diagnosis. The picture at the top of this post is one of the many beautiful walking paths I’ve recently found. Walking has become my emotional and spiritual release over the past few months and I hope you too, find your own path to health and peace of mind.


ClaudiaMyLeftBreast

Claudia Schmidt, a working mom with two teens, writes a blog about life after her breast cancer experience in February of 2010. You can follow her at My Left Breast. Claudia’s work has been featured on BlogHer, BA50 and Midlife Boulevard. She lives in bucolic Clinton, New Jersey with her husband, two teens, and a menagerie of pets. Follow her on Twitter @claudoo, Facebook or Pinterest.

 

 

4
Apr

50 Shades of Grey: Chronic Disease Style

Sharon Coyle-Saeed’s monthly blog post is ready for your to read!

Make sure you check back in with our blog in May for her next post!

50 Shades of Grey: Chronic Disease Style

By Sharon Coyle-Saeed

This week, I ventured into New York City for my preoperational testing in preparation for surgery which will take place on April 11. Yikes, that just got real…real fast.  As we learned last month, I have a strong double D coping strategy, denial and dissociation with my disease.  This month, we were going to explore the next step in the Kubler Ross model of loss, anger. However, sometimes, life situations come about that bring lessons that may be beneficial to share, ah, the life of a blogger.  Therefore, the month of April gives birth to 50 shades of grey…..chronic disease style.  Is there any other way?

Here was the scenario. I went into the pre-surgical unit after traveling into the city alone (I am woman hear me roar), and surviving an unmarked taxi…go Uber!  Feeling already like I won, I waited on a lengthy line just to register for the registration.  When it came to my turn in line, I handed the woman my orders from two doctors, and then, “the look” happened. Oh, come on! You know that look!!!! It is the look of pity. It can cut through me like no other look I know. The look, and well-meaning receptionist said, “Wow, these are the two chief doctors here. Your case must be very serious.”  I actually looked behind me, because I thought she may be referring to someone else.  It was followed up with, “I don’t want you waiting here a long time.”  And so it began.  Special treatment, the untouchable, the pariah, the tough case,  the one who makes the doctors work hard for their money, and perhaps even makes them feel like failures. Yes, I have heard it all.

On to registration. “Sweetie…”(I will let you in on a tiny secret of mine.  If you want to stay on my good side, I seriously despise any pet names of this nature. Moving on. I digress.), she continues, “I am so sorry. I can’t imagine going through what you have gone through. You must be very sick, but you don’t look it,” as she snapped my hospital ID around my wrist. Dorothy, we are not in Kansas anymore. ET, phone home.FullSizeRender

Next, came the dehumanizing hospital gown. This seriously dampens my mood, and puts me in a place I don’t like to visit. I only wear the gown during surgery, or the initial few hours in the emergency room. I change back into my regular clothing during stays, and let’s face it, blue is just not my color. Ok fine, I don’t do color. Wednesday Addams is my hero.  On this stop, came the x-rays. The technician read my report, and said, “Incredible. You have so many staples inside holding everything together.”  Yeap, yeap, and don’t forget the titanium, too. I can sing the David Guetta and Sia song if need be. Humor is one of my coping mechanisms….although, most of the time, I only crack myself up.

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Blood work and urinalysis followed suit. I pre-warned her. “If nothing comes out, and you do not get me on the first try, it is me, not you.”  With confidence she retorted, “I have been working here for 22 years, and I always get it on the first try.” Mmmmmmmmm.  First try, nothing.  Second try, nothing….three blood techs and 7 pokes later, blood finally flowed.  “I am shocked. Never in my 22 years.  You are really sick aren’t you? Well, sick or not sick, you look 10 years younger than you are,” she offered to my bruised hands, arms and shattered ego.  Unfortunately, I wasn’t biting.

Last stop, the EKG.  As the nurse had to gain access to certain areas on my body, my hidden self was revealed. “You are getting more surgery?  That is some set of scars. Is that an ileostomy scar?  How much more can they take?” she asked with a concerned look.  She looked at my orders. “You are not a candidate for a laproscopic surgery. You must be high risk.”  That is when my head started to spin.  I really didn’t know whether it was from the vials of blood taken, or the fact that my inner soul wanted to scream out, “There is more to me than this. Who is this you speak of?”

While studying in social work school, Karl Jung and his dualistic theory is mentioned quite a bit. Good or Bad. Right or Wrong. Persona and Shadow.   Sick and Healthy. Mild or Severe. Black or White. Problem is, I am not black OR white. I am 50 shades of grey.  In fact, I am 50 “shapes” of grey, as my disease and its manifestations have shaped me, yet, it does not define me.

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I wanted to cry out. I am a mother, I am a correspondent for a New Jersey newspaper, I am a blogger for WEGO Health, I run a support group, I am a Reiki Master, a singer, a graduate school student, and so much more. I am more than my disease.  Much, much more.  I am grateful for the disease for all that it has given me, and the lessons it has taught me with all it has taken from me, but, I will NEVER play the victim to this abuser, and I am my own rescuer , thank you very much.

I do realize that this IS happening. I am not delusional.  I will be going under the knife in 10 days. It is a major surgery. However, it is just one of the many greys in my life. I am not a sweetie, a look of pity, a serious case, a pariah or an untouchable. I am not my IBD or its manifestations. I am a person. To quote the Elephant Man, I am not an animal (nor am I the animal of this disease), I am a human being. My name is Sharon, and I actually have never watched 50 shades of grey.

Looking forward to hearing all the wonderful things that make up YOU!  We are MORE than our diseases.  So, so, so much more! 


Sharon CoyIMG_9124le-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. 

23
Mar

ICYMI: #HAChat Hosted by Marla Murasko

In honor of #WorldDownSyndromeDay on March 21st, WEGO Health had Marla Murasko, a very dedicated Down Syndrome Health Activist, host a second #HAChat in March! Keep reading to view the recap of the event below. Please note that our next #HAChat will be May 3rd, so make sure to check out our Twitter then. Thanks for supporting WEGO Health!

1
Mar

Sharon Coyle-Saeed Discusses DABDA

Sharon Coyle-Saeed’s March guest blog post is ready for you to read! Make sure to check back in April for her next post.

Happy reading 🙂

 

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As my social work internship for the coming year is working with hospice patients, I am re-reading the DABDA theory which Elisabeth Kubler-Ross coined. It is a processing of emotions upon hearing one has to face mortality quite sooner than they thought. They are steps one goes through when dealing with loss. I believe a more common term is, “the grieving process.”

DABDA is an acronym for the following emotions. The first D is for Denial, the A is for Anger, the B is the bargaining which occurs, the next D is Depression and the final A is for Acceptance. DABDA.  As I read through the chapters on the steps, I felt that this theory can be applied to losing one’s past life from a chronic disease. The loss that happens of our former self  and hope that this resonates with some of you as well.

The first emotion, which I would like to explore in this blog is the feeling of denial. The initial shock!

This can NOT  be happening to me and in some cases, thinking this is NOT happening to me. I was stuck in this one for awhile….and to some extent, still am (gosh, after all these years).

When I first learned about my diagnosis of ulcerative colitis in 1990, I thought that it was clearly a wrong diagnosis. I truly believed that it was because of drinking “tap” water.  I switched to Evian and did not see a difference. So, I moved on to flat out denial. I am not sick so therefore, I do not need treatment. I would  go for some periods of not taking my medicine(which I am not recommending. Just pointing out this is also an extreme effect of denial). I clearly recall auditioning and appearing in a community theater show, The Cradle Will Rock, and being so very ill and not even telling a single soul. It was a horrible isolation. Isolation, is also mentioned by Kubler-Ross, as a denial reaction.

I think I came to the realization that I was “not well”, when my local gastroenterologist said I needed to see an IBD specialist at Mount Sinai who sent me to a surgeon that same day. I had my first part of the J-Pouch surgery the next day. Clearly, this was a lot to digest(No pun intended). When faced with this extreme, I had to own to the seriousness that my condition had taken.

My next “shock” came when I started to have more frequent hospital visits in 2011 as a result of small bowel obstructions. I clearly remember my best friend, Theresa, after calling her for the umpteenth time and letting her know I was sick again, “I think it is a stomach virus or something I ate.”  She replied with, “It is not that. It is an obstruction.”  I was in TRUE shock. I truly believed with my whole heart that this was not chronic, and that I was just reacting to something outside of me and not something that was happening inside.

Is this healthy? Is this normal? It is not only the former two things, it is also a coping mechanism to deal with the stress of loss. In this case, our “healthy self.”  “I regard it a healthy way of dealing with the uncomfortable and painful situation with which some of these patients have to live for a long time” (Kubler-Ross, 1969, p. 52).

My feelings are we all can relate to some extent  to this state of denial and it is a normal feeling and okay to go through as long as it does not become so radical that we do not take our medications or deny our body’s limitations. This I still find challenging.

I have this inner core that says, “Tell me I can’t, and I will show you that I can”. Some say it is resilience. I say it is an inherited stubbornness(thank you Daddy). This worked to my benefit when I was told that it was highly unlikely to conceive due to the J-Pouch surgery and having a belly that is prone to concrete adhesions. That was all I needed to hear. I am happy to report I have two happy and healthy sons!

It also works against me many days when I do not pace and set limits to what my mind wants to do and when my body screams, “Stop! Enough! I need a break!”  Having any chronic disease or health condition, it is important to honor our body even more so and not see it as a weakness or a limitation.

I run myself to sheer exhaustion more than I would like to admit. I recall just last week when I visited my wellness doctor and told him, “I am hungry and tired.”  I thought to myself, you do not get any clear of a  message than that.  EAT AND NAP! EAT AND NAP! Which I am happy to say, I did both(fell asleep on one of the treatment machines after eating a baggie of gluten free Cheerios).  When I woke up,  I felt….refreshed!  Imagine that!

Perhaps “balanced” denial can be beneficial when it does not become too extreme. In the meantime, I am in the process of meeting different specialists, trying to listen to my body, but, also, push the limits on many days and admittedly, I still get very shocked when the pain of the obstruction comes. Is this really happening to me? Maybe it is just a stomach bug…..a 26 year long  stomach bug.

Hoping that you will leave a comment below to share how you feel denial resonates with your experience with your condition.  Join me next month to explore the next step of…………ANGER when we transition from, “This can not be happening to me!” to “Why the *#@# is this happening to me?”

Book Reference:

Kubler-Ross, E. (1969). On Death and Dying. New York, NY: Touchstone.

 

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

 

Sharon CoyIMG_9124le-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.