On a Scale from One to Ten, a Poem
I wrote the following poem when I was completely broken due to chronic pain. It is unfathomable to so many doctors that someone in so much pain can sit there…
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On a Scale from One to Ten, a Poem
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POTS: Please Explain in Words I Understand!
What makes a complex subject like postural orthostatic, tachycardia syndrome (POTS) easy to understand? For me, good intentions are a large part of the equation. That’s one reason I had high…
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POTS: Please Explain in Words I Understand!
Requiem for Me, A Poem
She stands there with opened eyes Forgotten memories, stolen by time At first she speaks softly, Her words never heard. Then she yells FIRMLY Still not one head turned. She…
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Requiem for Me, A Poem
Editor’s Choice: Merry Christmas and Happy Hanukkah!
Happy Christmas/Hanukkah/Holiday break Patient Worthians! This week, we are highlighting our amazing contributors for all of their heartfelt and honest stories. One post is about how to stay out of…
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Editor’s Choice: Merry Christmas and Happy Hanukkah!
Secret Ingredient Cranberry Sauce This Holiday Season
If you’re like me with a chronic illness, then you have to watch what you eat! Especially around the holidays. I LOVE cranberry sauce but whenever someone else makes it,…
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Secret Ingredient Cranberry Sauce This Holiday Season
La vida con disautonomia: Parte 2
Para cualquier persona que todavía está dudando Disautonomía y POTS, yo he llegado con lo que llamo el Challenge Trick Disautonomía Parte. Por favor, ver mi video y probarlo por…
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La vida con disautonomia: Parte 2
How to Find the POTS Information You Need
When it comes to evaluating websites to help you cope with how postural orthostatic tachycardia syndrome (POTS) affects your life, what’s your approach? Here’s what I look for (in order of…
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How to Find the POTS Information You Need
Un vistazo a la vida POTSY de Mari
¿Se ha sentido perdido en su propio cuerpo alguna vez? ¿Alguna vez ha perdido temporalmente su audiencia debido a la masiva sonando en los oídos? ¿Usted ha tenido el mundo…
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Un vistazo a la vida POTSY de Mari
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Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS
Oye, ¿te gustaría ser capaz de usar pantalones cortos en cualquier momento que desee, incluso en pleno invierno? Suena bien, ¿verdad? ¿Qué hay de poder comer tanta sal como desee,…
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Conozcamos a esta poderosa mujer comenzando una conversacion sobre POTS
La vida con dysautonomia – Part 1
Puedo parecer "bien" para que en el exterior, pero lo que estoy experimentando en el interior no es "fina". Tengo un par de diferentes formas de una enfermedad incurable llamada…
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La vida con dysautonomia – Part 1
¿Por qué es esta mujer tan optimista en la cara de la EDS?
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
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¿Por qué es esta mujer tan optimista en la cara de la EDS?
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Fainting Is Not For The Faint Of Heart… Really.
Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…
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Fainting Is Not For The Faint Of Heart… Really.
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How to “Eat Dance Laugh” for POTS
When I became a parent, I wasn’t acutely aware of what I was signing up for. In the beginning, my role was highly predictable and, in my mind, the newborn stage…
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How to “Eat Dance Laugh” for POTS
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My “Anxiety Disorder” May Be Something Else Completely?
One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…
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My “Anxiety Disorder” May Be Something Else Completely?
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How to Party Hard for Dysautonomia Awareness
Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
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How to Party Hard for Dysautonomia Awareness
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How Important is it for Your Doctor to Believe You?
In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…
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How Important is it for Your Doctor to Believe You?
Why There’s No Good Time to Slow Down with POTS
Lifestyle adjustments. You know your life will change once you get a disease diagnosis. These changes may be easy or hard depending on how you are currently living life. For…
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Why There’s No Good Time to Slow Down with POTS
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Dysautonomia and Its Astonishing Effects
Dysautonomia is an umbrella term for a number of disorders of the autonomic nervous system (ANS). But to understand the collection of conditions called "dysautonomia," first we have to understand…
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Dysautonomia and Its Astonishing Effects
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This Student with Dysautonomia is Out of the House!
Imagine having a student in class that looks... a bit like this on a regular basis. You may have a lot of thoughts about what might be going on. The…
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This Student with Dysautonomia is Out of the House!
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A Wish Come True: Dysautonomia and EDS
The Sentinel-Record publication did a feature story in July 2016 on a young boy, Seth McDaniel, who lives with his family in Tennessee. Just 11 years old, Seth is living…
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A Wish Come True: Dysautonomia and EDS
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What Parents-to-Be Need to Know About Genetic Testing and Race
Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…
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What Parents-to-Be Need to Know About Genetic Testing and Race
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The Day I Woke Up With POTS
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
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The Day I Woke Up With POTS
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What Every Spoonie’s Pantry Should Have
Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…
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What Every Spoonie’s Pantry Should Have
Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
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Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease
Mom With Sjogren’s and Lupus Will Make Your Heart Hurt
Nicole Tardiff-Brooks just wants to be a mom to Colin, her sweet 4-year-old son. But Nicole has several diseases--lupus, Sjogren's disease, and severe neurological and liver damage. Colin knows Mommy is sick,…
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Mom With Sjogren’s and Lupus Will Make Your Heart Hurt
