SBS Communities

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How I Beat the Odds and Survived Septic Shock

Andrew Jablonski: The Mighty Contributing Partner June 2nd, 2017 "I never imagined I might die from my own illness and its deadly side effect. I came close to that happening."

How a Child Seeing Past My Illness has Helped Me

Andrew Jablonski: The Mighty Contributing Partner "Even though my house looked like an infusion pharmacy at times, Max never batted an eye." Read more at link below or click here: Read Full Story

Calling Parents, Children, and Teens with SBS!!!

Dear SBSF Member,   Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to their child or teen. Or supervise the child or teen if they want to do [...]

To the Person Who Left Me a Rude Note After I Parked in a Disability Spot

By: Gina Szajnuk I truly believe your note says more about you as a person. This is why I continue to advocate for my children and for all rare and undiagnosed children. We live in a world where people judge you by the way you look. We live in a world where doctors don’t always believe you when you tell them there is something wrong with your child or with yourself. [...]

The Problem With Telling People ‘Don’t Let Your Illness Define You’

By: Rachel Allison Why? Because this illness likely affects the way you live your life and downplaying its validity belittles the full reality of what you awake each morning to face. It may leave you feeling worthless for being so exhausted from fighting – because why would you be exhausted from fighting a battle that isn’t difficult? How can you be so weary from something that isn’t a big deal? Why [...]

When You Have to Remind Yourself Your Mental Illness Isn’t ‘Laziness’

By: Anna Lente I find myself curled up under a blanket in the recliner, watching reruns of sitcoms and scanning Facebook while stress eating. I feel so lazy. I feel like I’m not good enough. But then I remind myself, this isn’t laziness. I remind myself I work very hard each day to deal with my mental illness. This battle takes most of my energy. So then I have to rest [...]

To the Girls Who Questioned Why I Only Occasionally Use Crutches

By: Caitlin Wren Yes. Sometimes I can walk just fine without any aid. I might not even limp. Other times I need a cane or crutches. It’s just the fact of my life. I have an illness that causes pain in a variety of areas in my body, especially my hips which are rather important in the walking process. Due to the weakness of my connective tissue, my joints are also [...]

My Experience Being a Woman and Going Through the Autism Diagnosis Process

By: Lizzie Davidson   Because conventional thinking and diagnosis still seem to lean towards boys who are more often identified autistic as young children, there are still vast amounts of girls and women out there who remain undiagnosed. Finding out information about the diagnostic process is not easy. There are things I wish I had been told. And I believe that — in the name of awareness — no one else should find out they are [...]

A Cure For Sepsis

EVMS Magazine 2016-2017 Issue 9.4 Doug Gardener Dramatic improvement seen in patient survival in ICU; Chance discovery could transform care of sepsis and save millions of lives worldwide NORFOLK, VA (March 23, 2017) – A critical-care physician at Eastern Virginia Medical School (EVMS) believes he has found something that has eluded medicine for centuries: a cure for sepsis. Paul Marik, MBBCh, developed the new treatment while caring for patients in [...]

It’s not ‘Picky Eating’: 5 Strategies for Sensory Food Sensitivities

By: Laura Russin I’ve read many articles and blog posts about picky eaters. They put forth an expanse of knowledge and make loads of professional suggestions. They also all miss one incredibly important thing: there is an enormous difference between a “picky eater” and a “sensory eater.” The valid suggestions provided are geared for picky eaters only, but a sensory eater is a different ballgame altogether, and this is rarely if [...]

Online Support Groups to Follow

61% of Americans turn to the internet for medical advice. while there is an abundance of healthcare information on the internet, many patients look for something more, such as an emotional connection. These connections are found through online support groups. In fact 1 in 5 online users have gone to the internet for support for their health concerns. Now many patients use those online connections and experiences as a supplement [...]

The Isolation Cycle of Depression and Anxiety

By Jacob Durn Throughout life’s miseries, accidents, awkward moments, mistakes and nearly all social situations, I have the burning desire to scream this into the faces of all those around me: Why do I have to live like this?  Read More

The Hard Truths About Life With Mental Illness

By Kalie Menge Almost every day now, I convince myself recovery is a pipe dream. I see where I’ve been, I see where I am and I see how many millions of miles away recovery is. I know it’s not getting any closer. I’m not getting any better. I’m getting worse, and I’ve been getting worse for a long time. Read More

To the College Students Who Ask If I’m OK

By Kate Rusmiselle I’m doing more than OK, because I have friends who accept me as who I am and I continue to meet people who will. A lot of people have done so with no questions asked. When friends do ask why I am the way I am, it is out of genuine curiosity rather than pity or concern. I don’t mind answering their questions. I often find it [...]

Flashpoint: Re-Write Reality as I know it. Or leave as is?

Andy Jablonski My name is Andrew Jablonski, and I am just an ordinary medical professional and advocate in the Short Bowel Industry, but with the help of my friends and family, I seek out others like myself, to help make a difference in the world of digestive diseases such as Short Bowel Syndrome. I am no superhero, I am just a man, born under an extreme set of circumstances. I [...]

I Am Not My Depression, I Am My Fight

By Liz I. I try to look at it through a logical lens. What is the science behind it? From that perspective, I would have to say it is an illness. Its cause is likely multifaceted. So my depression boils down to a list of symptoms. But does it make a difference when some of those symptoms are emotional or behavioral? Read More

When a Woman Saw My Wheelchair and Asked ‘What Did You do to Yourself?’

By Kayla Shuch A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself. My parents understood my reaction and explained my situation. This experience has become one of the biggest reasons I hate it when people assume things about me. Read More

What an Autistic Shutdown is Like for Me

Authored by: Samantha Craft In my day-to-day living, I seek out the familiar. Because the familiar doesn’t need to be analyzed. And in that there is ultimate refuge for me. Familiarity can come in multiple shapes and sizes — in a predictable routine, a familiar voice or face, a soothing melody, a favorite movie or book, a pattern of speech. When I am unable to find predictable retreat in the [...]

What its Like Being a Mom With Chronic Illness and Have Kids With Chronic Illness

  The whole “put your oxygen mask on before you help someone else with theirs” thing… I’ve had to embrace it as my health has worsened over the last few years. That concept is hard for most moms because we tend to put our kids’ needs above our own, but if I don’t take care of myself, I literally can’t take care of my children. Read More

When I Told an ER Doctor ‘Im Here because I Need Your Help’

  I was so overwhelmed by emotions of rage, frustration and, worst of all, helplessness. I was lying in a hospital bed surrounded by doctors who didn’t understand my body and didn’t appear to want to listen to me. But I was lying in a hospital bed, which meant I was depending on them to help me — and it didn’t appear that anyone was going to. I was reluctantly [...]