Obtener un diagnóstico de cualquier tipo es miedo. Obtener un diagnóstico de una enfermedad autoinmune rara y potencialmente mortal que nunca han oído hablar de es aterradora. Pero si estás…
Living with a chronic illness is not an easy task. There are obstacles that have to be faced daily. My oldest daughter has a severe peanut/tree-nut allergy that we discovered…
The word Love. What does that mean to you? Most people say: "Well holding hands, kissing, and spending lots of time together." Love is a strong word. I feel if you…
January is not a surprising month. It takes people a while to remember to write the correct year, your Facebook feed is full of people going hard at the gym,…
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…
It is always so heartwarming to read a great story. Especially, when someone beats the odds and overcomes something tremendous. Nicole Kelly's parents did not think they would see their…
Do you ever have those moments where you're doing something that seems very routine, but then you realize with sudden clarity how much of it is affected by your chronic…
Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out…
No soy un fan de la televisión de la realidad. Pero yo soy un fan cojonudo de Yolanda Foster, un ama de casa real de Beverly Hills. Aunque ella y…
He estado usando los sitios de citas por Internet durante los últimos once años. También he estado tratando con una enfermedad rara y sin diagnosticar durante los últimos cinco años…
Sometimes it feels like nothing is going your way. Though it can be difficult, try to find the positive. Silver linings can make a world of difference.
Tomorrow is another day. New beginnings and new opportunities are right around the corner and bad days don't last forever. Keep your chin up!
This community has come together in a big way to support a local family. Eric Frisbee and his wife, Julie, have two daughters that are living with cystic fibrosis. They…
This is always something good to keep in mind, but especially around the holidays! Spoonies often are dealing with fatigue and pain. Don't feel like you need to do so…
Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity?…
Básicamente todo el mundo ha visto afectada por los altos costos de la atención médica en algún momento de su vida, y para muchos, no mucho cambió cuando Obamacare (Affordable…
Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…
When that moment happened, and again I don’t know when it happened, but when that moment in my head just clicked and I stopped being, or stopped putting myself in…
Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3
Sociologist Georg Simmel, calls Gratitude the “ moral memory of mankind”. But researchers tell us that gratitude is more than a moral or ethical acknowledgement of help of some kind.…
Maybe you've seen Patient Worthy's article about Spoon Theory, maybe you've sent the Spoon Theory to friends or relatives, maybe you started using the term "spoonie" before you even really…
September was dystonia awareness month [but that doesn't mean we can't keep promoting awareness]! Dystonia is a rare neurological movement disorder that can cause involuntary muscle spasms and contractions, tremors,…
Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist.…
Most people have probably heard the saying, “change your thoughts, change your life.” There is great truth to this because how we think can significantly impact our mental and physical…
People mostly know that cystic fibrosis (CF) causes issues with the lungs—to the point of breathing difficulty. Contrary to common assumptions, cystic fibrosis also affects the pancreas, making it difficult…
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