October 6th, 2015

2015 ePatient Connections Conference

by WEGO Health

ePatient Connections 2015




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



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.


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


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


o   Wyndham Philadelphia Historic District Hotel




October 5th, 2015

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

by WEGO Health




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.


September 28th, 2015

How To Get Stuff Done When You Are Depressed

by WEGO Health



Did you know that by the year 2020, the World Health Organization says depression will be the second greatest disability in the world (second only to blindness)?  Because I’ve lived with bipolar disorder my whole life (diagnosed at 18 after a friend’s suicide) and worked in mental health nonprofit for years, I am not surprised.  When you’re depressed, each task requires energy.  Answering an inbox full of emails is intimidating.  Having bipolar 2, I sometimes wish there was a “pause” button I could hit when things get rough.  Fortunately and unfortunately, life goes on when you’re depressed.  I first started honing strategies to combat depression’s effects on productivity when I was a student.  In college, I battled bipolar disorder and polycystic ovarian syndrome.  I was fortunate to graduate from Northwestern University cum laude with two majors despite my obstacles.  All these years later, I also live with Myasthenia Gravis, asthma, and psoriasis.  Some of the techniques I learned for working despite depression now help me with my daily physical pain and fatigue.

5 Ways To Get Stuff Done When You’re Depressed:

1.  Classify Tasks According to Level of Difficulty:  I classify the things I have to do as a 1, 2, or 3 where 1 = easy, 2 = moderately difficult, and 3 = hard.  If I’m depressed, I focus on all the 1-level tasks first like showering and eating breakfast.  As I cross off 1-level things on my list, I build up enough confidence to tackle 2 and 3-level tasks like responding to emails, writing articles, or preparing lesson plans.

2.  Schedule an Appointment With Your Therapist ASAP:  I try my best to catch my depressive episode at the beginning, before it gets out of hand.  (Using bipolar mood charts help me with this.)  Of course, it can be hard to do that every time and sometimes I miss.  Mental illness, like any illness, can be unpredictable.  But, if you’re already well into a depressive episode, seeing a therapist is still a good idea.

3.  Prioritize Tasks:  Filter tasks according to urgency.  I usually make a “to-do list” every night for the next day.  I put 4 **** to tasks that must be finished immediately.  3 *** are for tasks that must be finished the next day.  2 ** means a task must be finished sometime this week.  1 * means it’s due next week.  When I’m depressed, I ignore tasks that have two or fewer asterisks. If trying to finish a list is too daunting, highlight 3 things you want to accomplish for one day–just three things.

4.  Find an Endorphin-Releasing Activity:  If you’re able to exercise, exercise is one of the best tools we have in fighting stress and depression.  While I continue to take prescribed medications and see my therapist, I do much better when I exercise as I blogged about in 4 Mental Health Benefits of Exercise.  Of course, the conundrum is that while exercise helps depression, being depressed can make it harder to exercise.  (See my article for Bipolar Out Loud, 6 Ideas:  How To Exercise When You’re Depressed.)  Physical activity can break the monotony of your routine.  Even 15-minutes of cardio can make my difficult situation seem less insurmountable.  Exercise releases endorphins, aka “the feel good hormones,” which make me feel better about myself and my life.

5.  Identify Allies:  “Allies” are people who will understand and help us.  An ally can be a friend or a family member or a coworker who has a loved one with mental illness.
Yesterday, I got an email from a friend and fellow mental health advocate, Mike, asking me to be part of a great project he’s starting and if I’d like to be featured on his website.  The email came with some attached questions to fill out for the website.   Because Mike is a friend and the project is mental health in nature, I decided to be honest with him.  By contrast, I’m not going to respond to a work email by telling my boss, “I’m really depressed right now.  Can this wait?”  By distinguishing between emails where I had to be professional  and emails where I could be less guarded, I felt less stress.  Mike’s response to my honest email also made me feel less alone.

 My email response:

Hi Mike,

I’m interested in collaborating. In fact, I’d love to talk to you on the phone some time…Right now, I am going through some depression. I was in bed almost all day today.  I’d like to fill out your attached questions but it won’t happen tomorrow.  I will get back to you ASAP.  As you know, it’s hard to balance health problems with a job…
Mike’s response:

Hi Jessica,

I’m sorry to hear that you are going through a rough time. My cell is below…Please feel free to call whenever and fill out the sheet when the time is right.  If you’d like to call this week, I’ll be available after 3pm EST each day.  Take care of you.

–Your Stylist, Jessica Gimeno

This article, written by Jessica Gimeno, originally appeared here on Fashionably ill.  Subscribe to Fashionably ill and get your free gift, a Depression Tool Kit, today!  Sign up at www.fashionablyillgift.com.  Your kit comes with:

  • 10 strategies for getting stuff done when you’re depressed
  • 4 Scripts to help you explain depression (or bipolar disorder) to loved ones and get accommodations from employers and professors


September 21st, 2015

The First Annual #RABlog Week!!!

by WEGO Health

RABlog Week

It’s #RABlog Week! In participation with the first annual #RABlog Week, WEGO Health has put together a fantastic blogroll from some empowering health activists who write about rheumatoid arthritis. Thank you to everyone who helped us create this great blogroll! WEGO Health would also like to give a huge shout out to Rick Philips who had the idea to create the first annual RA Blog week.

Now that #RABlog Week is here, click on the link to see the blog prompts that you can write about each day this week: view prompts here

Swell Girls~Arthritis Queensland

Arthritis Rebel

Finding My OM with RA

HeART Work for RA

Mom’s Small Victories

Arthritic Chick

Deb’s Wellness Blog

As My Joints Turn: (My Autoimmune Soap Opera)

Getting Closer To Myself



The Arthritis RD

My Medical Musings

Living with RA

Not Standing Still Disease

An Autoimmune Arthritic Systemic Life

Brass and Ivory: Life with MS and RA


The Seated View

After Conquering Arthritis: Barbara Allen’s Life Now

Rheum For Love

Life According to Kenz

And then you’re at Jax

Autoimmune Mom


Facets of Living with RA


RA Guy

RA Dancer

Life with RA is a Pain

All Flared Up

Rheumatoid Arthritis


The Hurt Blogger


The Life and Adventures of Cateepoo

Conquering Arthritis


Here’s Your Gold Watch-Rheutired

Chasing After Normal


Soothing Food Sensations

International Foundation for Autoimmune Arthritis

RA Warrior

My Lungs My Life

RA Chicks

Creaky Joints

Ferhaan’s Blog

A Figment of Fitness


Working My A.S. Off!

Becoming Neurotic


Barking Dog Shoes

September 18th, 2015

Mesothelioma Awareness Day

by WEGO Health




• Mesothelioma Awareness Day is September 26, 2015 and the Mesothelioma Cancer Alliance is spreading awareness of the disease, it’s causes and prevention.
• About 3,000 people are diagnosed with mesothelioma each year in the US.
Mesothelioma is caused by exposure to asbestos fibers, a carcinogen in construction and consumer products that is not banned in the US.
• Mesothelioma is a rare, but completely preventable cancer.
• Knowing information on asbestos exposure is key in mesothelioma prevention.




So what can you do?
o Help spread the word by donating your social status here
o If you have an older home, make sure that any asbestos abatement is carried out by a licensed professional.
o Contact a local senator and tell them you want a ban on asbestos.




Information above provided by: http://www.mesothelioma.com/

September 14th, 2015

September is Dystonia Awareness Month

by WEGO Health

In honor of September being Dystonia Awareness Month, the WEGO Health guest blogger this week is Pamela Sloate who is sharing a post she wrote about why Dystonia awareness matters.

Pam Sloate Photo

“Why Dystonia Awareness Matters”

When chronic illness strikes, it ushers in a host of issues that impact the entire family. My dystonia was a case of childhood onset, I find it difficult to recall time before dystonia. My parents faced an uncertain journey and the anguished realization they couldn’t offer many answers. My brother watched me wrestle with a relentless disorder we didn’t fully understand. As for me, life became a continuous struggle to level the playing field and fit in with my peers, who didn’t know how to react to my all too visible condition. Neither did I.


Diagnosis only took a year, rather remarkable for a rare condition like dystonia that remains widely mislabeled. Even in this day and age, pinning the tail on the dystonia donkey averages 5 years. Back in the 1970s, identification of my condition presented a double-edged sword, as dystonia was barely a speck on the medical landscape. We lacked foundations advancing medical dialog let alone clinical research. In the planning of the initial international dystonia conference, question number one became how to fill the room.


The first movement disorder neurologist my family encountered – at the time, one of only a handful of U.S. doctors qualified to pinpoint dystonia – declared my case a lost cause. While my parents had secured a diagnosis, they had also reached an impasse. Notwithstanding a lack of patient advocacy organizations to guide their efforts, my parents persisted. Three years into my dystonia, through the initiative of an up and coming neurologist, they found my meaning med, a Parkinson’s drug with heavy side effects I’ve reluctantly “accepted” in the interest of mobility. Meanwhile, my parents committed themselves to transforming a small corner of the world called dystonia. If there were no way forward, then they would construct a road.


With the hindsight of 40+ years of living history, I see how far we’ve traveled and the long trip ahead. I also evince a better understanding of the crucial role we play as patients. Yes, dystonia can be severely debilitating and attract undue attention but action is empowerment and the imperative of awareness is a siren’s call that beckons us to chime in. It’s really quite simple. Awareness matters to improve time to diagnosis and gain funding for research. Awareness maters because we need more doctors investigating the medical underpinnings of dystonia. Awareness matters as a bridge to human understanding. Awareness matters as the foundation of our hope.


Author Bio:

Pamela Sloate is a health activist who devotes herself to an array of awareness efforts. She also moderates a patient support group, advocates for the dystonia community, and advances fundraising. Pamela holds degrees from Brown University and NYU School of Law, and her career spans law, marketing and non-profit administration. She can be found blogging about the twists and turns of life with dystonia at www.dystoniamuse.com. To commemorate her parents’ pioneering contributions to dystonia awareness and medical research, Pamela has established a fund in their honor in collaboration with the Dystonia Medical Research Foundation. Donations can be made to The Martin & Roberta Sloate Dystonia Research Fund at www.dystonia-foundation.org/sloatefund.

September 8th, 2015

Losing Faith and Finding it Again in the ICU

by WEGO Health


When I was in third grade, every night I would press my fingertips together before I drifted off to sleep — it was my little language I had with God. Somehow, I told myself, if I pressed my fingers together as tightly as I could, and felt that warmth in between each tip, whatever I said, God could hear me. And so every night, I would do this ritual, like a grasshopper rubbing its legs together, and chant the same words:

Dear God, thank you for a beautiful day today. Please let me live a long, happy and healthy life. Please visit me in my dreams. Amen.

And then I’d slowly feel my eyelids fall, and I would be transported into the world of dreams. I remember dreaming about my favorite pop-stars coming over to play, being chased by vampires, other embodiments of childhood fears and fantasies, and even heaven — but I never did see God.

When I awoke in the morning, I would run through my dream from start to finish, trying to remember every last detail and see if God was there, like a Where’s Waldo? storybook. I never did spot God. I often imagined him in an oak tree, right in front of my window, and told myself he never came to my dreams because he was too busy watching over me as I slept, keeping our home safe.

I rubbed my fingers together more firmly and fervently as I grew older, all the way until I was 18 years old. I never gave up my search for God. I saw Him in all of nature, but I wanted my own message in my dreams. Outside my window there were so many different trees, every tree unique and unashamed to be so. They stood tall, and each outstretched its branches to God in its own heartfelt way; some reached wide, tall, around and some reached deep down into the earth, which is what their roots are for. And they reach out towards each other too. They all knew that God was everywhere, including in themselves.

This was the lesson I was to learn myself.

At 18, I had a near-death experience that would ultimately transport me into the deepest gratitude for life and daily celebration of its blessings. In spring of my senior year, I suddenly developed a blood clot and fell into a coma for six months after my stomach exploded and both of my lungs collapsed. I needed 122 units of blood. I have only vague memories of my coma, as though I was looking up at the sun from underwater. My dreams were surreal, mismatching times, places, and alternate realities. I had pleasant dreams of fantastical places, occasionally interrupted with muffled words that were said over my bedside. But I still did not see God in my dreams. My life may have changed, but my search for Him carried on.

I have fuzzy memories of slowly awakening from my coma: seeing the world from my back, untangling confusion as I dealt with tubes, bags, and medical appliances stuck to me that I had never heard of before, and grappling with comments that I was “doing much better” now. Then I remember the terribly sobering day that a doctor finally told me what was going on. He said that I had no stomach anymore, I could not eat or drink now, and he didn’t know when or if I would be able to.

What do you say to that? Suddenly, my childhood dreams of one day finding God shattered. Now, it seemed as though there was no God or anyone to protect me anymore. I felt betrayed, as though the promises made to me as a child were all lies, that fervently rubbing my fingers together day after day for 18 years was all for nothing.

Losing your faith is a scary thing — especially in the midst of danger and uncertainty — because you don’t have anything substantial to stand on. There is nothing to tell yourself when you fall, and there is nothing to push you forward, even when the future feels daunting. But here I was, a teenager, completely displaced out of the life I felt belonged to me, suddenly a medical marionette with a new body, vitality, literally woken up to a different reality that I could never anticipate or even comprehend as a happy-go-lucky high school senior.

Going to sleep took on an entirely different meaning in the ICU. The lights were constantly on. Lying in bed all day, I lost my sense of day and night. When the day shift started to do their final rounds of vitals at 6 pm, I knew that night was approaching and I anxiously started thinking about how on earth I would ever get to sleep. At night, my ICU unit was dead quiet. All you could hear was the occasional sound of a nurse receiving a medication from the pharmacy downstairs, which sounded like a vending machine.

I remember feeling so paralyzed at night trying to get comfortable in that narrow, still hospital bed in the lonely night. I would hold my hands over my head and stuff them behind my pillow because I felt so cramped and closed in it felt nice to open up my chest when I could manage stretching my arms over my head, on the rare occasion it didn’t disrupt my constantly running IVs. I’d tumble around in bed for hours, eager for day to arrive with some kind of distraction — even an x-ray — anything to take my mind off the impossible quest to find one comfortable resting position.

As the hours ticked by, I would see the nurses outside by the nurses station sipping drinks through straws. I felt thirst on my lips and a chill in my heart. I longed for my “real” life to be restored, for me to leave the hospital, walk again, sleep in my own bed. I refused to rub my fingers together. I wasn’t sure what it was for anymore. Most importantly, I wanted to take a sip of water. Or know if I’d ever again enjoy that simple luxury.

One night, the unit was dead quiet as usual, so quiet I could hear a light rain start to tap on my window. The rain quickly gained momentum, and soon it seemed to be a downpour, from what I could hear over beeping medical machinery. I was thankful for some kind of sound, some kind of distraction — anything but that awful silence. For the first time since I had come to, I felt at peace… and sleepy. I still couldn’t fall asleep, but I knew what I could do. I could talk to God.

Nervous to bring this idea of childlike faith back into my life, I softly held my fingertips together, and I started to shift them back and forth. It felt odd to feel my fingertips again after so much had happened. They felt wrinkly, thin, and dry. Not like the baby-soft, stubby fingers I remembered. I took a breath as deeply as I could from my groggy, mucus-filled lungs and strained my neck to look up at the ceiling as far as I could.

Then, I remember raising my arms and painting a circle of safety around my head, the shape of the sun. In that same childhood whisper, I began to pray.

Please God, grant me a miracle and let me be back in Fairfield eating and drinking again sooner than the doctors think, like maybe even in two weeks or so, please God, give me a miracle.

I repeated that word “miracle” over and over again and each time I said it I would raise my arms higher and higher, wider and wider, creating even more of a sweeping, expansive movement with my arms.

I did not drink two weeks later. It was over three and a half years that I could even have so much as an ice chip, and food eventually followed, although that was not a straight path either. But, a miracle did happen when I started to pray. I fell asleep. And in my sleep, I found God. I didn’t see Him, as I always thought I would as that old man watching over me in an oak tree. I found something far greater. I found my faith. And once I found faith again, I saw God everywhere. He was the one giving me the strength to hold on and the hope that things would get better.

Things did get better, very gradually. Two ounces of water the first week, then four, then six. My first bite of food in years. Becoming a mixed media artist, writing a one-woman show about my life, learning to live a “normal” life again, finally going to college at 27 years old, getting engaged, planning a wedding, and allowing myself to believe in miracles again and feel that overwhelming sense of gratitude for the miracles that do happen every day.

Most miraculously, I had the realization that God was in my dreams all along, and even better, with me day and night, everywhere and anywhere.

Our dreams are the seeds that God plans for us, where our intuition whispers to us, and where we can find an anchor to our place in the world — even if we are “displaced” from it suddenly at 18. In our dreams, we can find our way back home. My dreams are now my safe place, where I can mingle with myself and with God. They are my Velcro to the universe and an ever-flowing fountain of faith, replenishing my trust in life whenever circumstances may make me afraid. Dreams dreamed me back into life.

You can also view this post on OnBeing.com : http://bit.ly/1NyQUS3



Amy Oestreicher is a 28 year old actress, musician, teacher, composer, dancer, writer, artist, yogi, foodie, and general lover of life.  Surviving and thriving through a coma, 27 surgeries and other trauma has inspired Amy to share her story with the world through her passionate desire to create and help others.  Piecing her life together after her initial dreams of performing musical theatre took on a beautiful detour into broader horizons.  Amy has written, directed and starred in a one woman musical about her life, Gutless & Grateful, has flourished as a mixed media and acrylic artist, with her art in multiple galleries and mounting dozens of solo art shows, and continues to share her story through her art, music, theatre and writings.

More information on her unique story, as well as her creative ventures can be found at http://amyoes.com, and visit her blog http://www.allspiceandacrylics.blogspot.com/ for her newest art, music and inspirational musings.  You can also visit her Etsy shop at https://www.etsy.com/shop/AllspiceandAcrylics?ref=hdr_shop_menu

August 31st, 2015

In Case You Missed It

by WEGO Health


WEGO Health has been extremely busy this summer and we’re sure you have been as well!  This blog post is to fill you in on what you may have missed on our sites last week. To put a little spin on to things we have asked members of our own WEGO Health team to pick out their favorite posts and tell us why they liked it so much.  Did you have a favorite post last week? Let us know what it was in the comments section.


Todd, Chief Strategy Officer

Favorite post: https://www.facebook.com/wegohealth/posts/10153603536269254


“It’s hard to imagine having symptoms – often really unpleasant ones  – and not having others believe that you’re ill. Yet that’s the burden of patients with invisible chronic illnesses.  Patients with Lyme Disease, Lupus, RA, and many other conditions endure extreme discomfort that family, friends, loved ones often don’t appreciate and many times don’t believe to be real. That’s understandable I suppose, but truly unfortunate nonetheless.  To that end, I highly encourage everyone who knows anyone with an invisible chronic illness:  know that the symptoms are real but you just can’t see them, so please be as empathetic as possible.  Don’t turn a blind eye to those with invisible chronic illnesses. ”

Laurel,  Business Development Associate

Favorite post : http://www.cnn.com/2015/08/17/health/bionic-ear-auditory-brainstem-implant/


“Bravo to the parents that took advantage of this opportunity and to the creators of such an innovative solution to hearing loss.  My son has mild hearing loss due to a deformity in his ear bone structure.  He struggles with his speech and confidence in general due to his genetic makeup.  I cannot imagine what it was like for Caiden prior to his surgery.  His journey will surely bring many parents and children hope to have the ability to hear.”   _______________________________________________________________________________________________________________________

#IBS affects almost 1 in 6 people in the US – learn about a management option. Msg sponsored by the makers of IBgard




Sue, Insights Manager

Favorite post:  https://www.facebook.com/wegohealth/posts/10153611738349254


“Check out this very timely article about Back to School anxieties facing many kids.  I have several friends whose children have just started back to school.  I think it’s very interesting how some children experience anxiety at the return to school, while others go back with sheer excitement.  It’s so important for parents to be observant and to do what they can to ease any anxieties that their children are displaying.  Whether you’re a parent of a child just starting Kindergarten or a parent of a teenager heading to a new high school, this is a very good article and well worth the read.”

August 21st, 2015

Who Has Your Medical Records?

by WEGO Health



Who Has Your Medical Records?

It’s 9:30 a.m. Tuesday morning. You have an appointment with a new specialist. Do you know where your medical records are?

If your answer is anything other than in your possession, your health could be in danger. To be sure that a true portrait of your health is provided to any and every physician who treats you, you have to take charge and provide them with accurate and complete medical records including all tests, lab results, information regarding procedures, surgeries, and physician notes.

Records get lost. Notes are often placed in the wrong patient files. Physicians and their office staff don’t always get your records to the physician you are going to see by the time of your appointment.

Don’t believe me? I know of one case where a young man went to the emergency room to be treated for a broken ankle. When he asked for a copy of his treatment records to give to his insurance company for payment on a claim, they denied his payment because according to his records he had not been treated for a broken ankle, but rather had had a hysterectomy while at the hospital. It took him months to get his medical records corrected.

We are keenly aware that we need to protect our identity from theft. We know we must guard our credit reports from false information. Few of us are as diligent with our medical records.

In August 1996 the HIPAA law was passed by the federal government. Part of that law guarantees patients access to their medical records. As a patient living with a chronic illness, you need to take full advantage of that law.

In 2002 I was in congestive heart failure, had fluid in my lungs, and required specialized care at a University Medical Center. That center was requesting all of my medical records regarding this illness. I was diagnosed in 1992. That’s 10 years worth of records I had to gather beforeI could be treated. Physicians who used to be with one group were now out on their own. Physicians had closed their practices. Physicians had moved. It was a daunting task, one that I will never have to face again.

I successfully gathered all of those records, which are now in 3 ring binders in my house as well as scanned for permanent storage. Each time I see any of my doctors, I ask for a copy of the records including lab findings and physician notes and add them to the binder. I am a complete patient who has a complete record of my medical history.

Each time you see a doctor or visit a treatment center, ask them for a copy of your records from that day including the physician notes. Keep these records together in a folder, a binder, or a notebook.  No one cares as much about your health as you do and no one is going to be as diligent about your medical records as you are.


From the life of Wanda M. Argersinger

© 2015 All Rights Reserved



Wanda M. Argersinger was diagnosed with lupus in 1992. She became the Executive Director of The Lupus Support Network, Inc., in 2003 when lupus forced her to leave her career as a network engineer. She has been writing since the age of 6, currently writing two blogs about lupus, and one blog dedicated to life and the humorous things that happen to all of us.

Wanda M. Argersinger, Executive Director

The Lupus Support Network
PO Box 17841
Pensacola FL 32522-7841

850.478.8107 or 800.458.8211


August 11th, 2015

Getting Past Feeling Down

by WEGO Health



In this world, no matter what you do you will always run into mental challenges and stressors. When you add a chronic disease on top of that, mental challenges and stressors become inevitable. Coming from experience, I would much rather take on the physical aspects of a disease than the mental and emotional sides of it. I will give you examples and reasons why but first, remember everyone is different; this is just what I went through.


When I was 10 years old, I was diagnosed with Ulcerative Colitis, only to find out years later it would actually turn out to be Crohn’s, I was misdiagnosed. Both of those diseases are in the category of Inflammatory Bowel Diseases, which are autoimmune diseases that attack the digestive tract. Crohn’s Disease can attack the entire tract where Ulcerative Colitis is just in the large intestine. Since I was diagnosed I have, so far, had a total of 13 abdominal surgeries, 2 Ileostomies, countless hospitalizations, procedures, transfusions, and more.  Although these are all complicated physical things, they are nothing compared to the prices you pay mentally and emotionally.


When you have a disease you have a high chance of falling into depression, experiencing anxiety, and feeling guilty and disappointed because things are happening that you cannot help, and those things happen to be affecting all aspects of your life.


Recently I was hospitalized for around a week and my job had decided that due to this being my fourth hospitalization in three months they were going to put me out for a month. I was not happy, I felt disappointed and guilty because I had to leave everything up to my girlfriend to handle and being as prideful as I am, I did not take it well. It was like I was no longer contributing. She worked hard while I sat at home because my disease disabled me and prevented me from doing work.


I pride myself on how I manage my life, my disease, and how I work as hard as I can to make all of my dreams come true, but it is hard when things like that happen.  You leave early from work or can’t come in because of your disease and that feeling in itself is difficult. I always get angry and feel unaccomplished. I can’t finish or do what others can because I am sick, it is not fair.


Before that I was in LPN school and about half way through it I had to have surgery and was forced to withdraw. I have a fear of not reaching my goals, which is why I work hard and stay as positive as I can. I became depressed. The fear of failing and not reaching my dreams settled in and this year I am still not able to go back to school because of being sick and needing another surgery.  I was so angry and for the first time I asked, “Why?”


I believe everything happens for a reason, and I also believe that it is ok to feel those things because it’s a part of life. Getting up and doing as much as you can or finding things that make you happy or calm are sometimes all you can do to feel better. Something I did during my hard times and something I still do is dance. It has been a huge outlet for me. I can put everything I feel at that time into the song I choose and my choreography. Some other things I love to do if I’m feeling up for it include crocheting, writing, practicing yoga and working out. All of those activities are very relaxing and help me find a way to get my feelings out. Recently, I found that talking to someone is a really good way to get through the hard times. I was the type of person who faced everything on my own and only reached out only to my mother, until someone walked into my life and showed me it was okay to talk about it. It helps a lot.

When you feel like you are struggling with difficult feelings and emotions, do whatever it is that relaxes you and makes you happy. You are not alone and you will get past it.


Author Bio: My name is Sarah Rae, I am 22 years old and was diagnosed with Crohn’s Disease. I was diagnosed at age 10 and had my colon removed when I was 12, leaving me with a J-Pouch. I am the writer behind Living Life IBD Style, where I share my experiences, stories and positive mental attitude with anyone who will take the time to read it.


Thank you for your time,
-Sarah Rae