Neeley's Joy Foundation
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1/24/2019 0 Comments

More Zzzzzz's

When someone without a chronic illness is tired, they can get some extra sleep in order to feel fully energized. However, for those who have a chronic illness, sleep isn't always a cure for exhaustion. Someone with a chronic illness could probably sleep their entire life and still feel tired. In fact, sometimes sleeping can leave chronically ill people waking up even more tired. Then again, if the chronically ill don't sleep, that can make them tired. See the struggle? There isn't much of a solution to our extreme exhaustion that prevents us from doing everyday things. The next time someone with a chronic illness informs you that they are tired, remember that sleep isn't always a cure like it is for the average person.
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1/21/2019 0 Comments

Star Power

Tori Foles, wife of Nick Foles of the Philadelphia Eagles, is fighting Postural Orthostatic Tachycardia Syndrome along with the other one to three million people in the U.S. who have also been diagnosed with this condition. With her story being put on the news, more and more people are finding out about this illness and how common it really is. I love that this knowledge is being spread! Nick Foles talks about how elated he is concerning his football victory, but hands the real victory to his wife who courageously fights her illness daily.
Click here to read her story on CNN
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1/20/2019 0 Comments

Granny Panties

Nothing is worse than wearing compression tights that go all the way from your waist to your toes, in 115 degree weather daily. I get stares from people age 1 to 100. While every other teenager in town is wearing shorts and flip flops, I am stuck wearing ugly compression tights that I attempt to cover up with jeans. One of the hardest parts of being chronically ill as a teenager is the fact that most other teenagers are super healthy and active. However, I don't have that luxury, (unless the struggle of putting the compression tights on can be considered a workout.) Luckily, I can get along with being at least semi-active by doing some weird things like wearing 'granny panties.' These compression tights save me from awkward encounters of fainting to the floor in public. Sometimes you just have to not care about what others think in order to do what is best for yourself!
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1/15/2019 0 Comments

A Spoon Full of Energy

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​​After being diagnosed with POTS, I struggled to describe to my family and friends what it felt like to live with a chronic illness. I have found that this story is the best way for others to get a glimpse of what it is really like. As someone with a chronic illness, I have learned that energy and strength is a privilege. In a way, having a chronic illness has taught me to focus on what is most important, because my spoons are limited. I have found this story to be super relatable and a great resource! 



Click here to read "The Spoon Theory" story
My grandparents gave me this spoon necklace as an extra 'spoon' to do one more thing in my day. I have found it to be a source of strength for myself and a reminder to others that I only have a limited amount of 'spoons.' If you google spoon theory necklace or key chain, you will find thousands of necklaces and key chains to choose from. Someone you know with a chronic illness would love this as a reminder that they are strong!
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1/9/2019 0 Comments

The Founder's Journey

​Though every chronic illness story has similarities, we have all been on our own unique roller coaster rides. My story is no exception. Back in February of 2017, I was an average teenager who loved hanging out with her friends and doing things all teens enjoy doing. I ran track the day before waking up with symptoms such as fatigue, vertigo, and a constant migraine. After realizing this was more than just the flu, we sought out help from medical specialists. The fear of the unknown was always in my mind as well as my family’s. Doctors often suggested it was just all in my head. After almost five months of going through test upon test and going to over fifteen specialists, a cardiologist finally suggested a diagnosis for Postural Orthostatic Tachycardia Syndrome (POTS for short.) POTS is a condition in which a patient has an abnormally high increase in heart rate when changing from lying to standing.
Oh and yes, I discovered that POTS is chronic. My world came tumbling down. I could no longer run track as I loved doing. I had to stay home in bed on the weekends rather than going out and hanging out with all my friends. I missed over half the school year. I lost some of my best friends. I did not feel like I had a purpose anymore. I felt a loss of who I once was. At times I did not think I could go on much longer. Doctors would tell me that I was better, but then I was not. I started losing hope. I wondered why me, as it seemed as if most of my friends had perfect lives. These past two years of my life have been both the best and the worst. I have learned things that I would never have been able to learn if it weren’t for my chronic illness. I want to share a few of those with you.
  1. You have no idea what people are going through behind closed doors, so be nice! We are kind to people who have a cast on their foot, but not always kind to those whose problems we cannot see.
  2. Things could always be worse. Even though my health may not be perfect, I have food on my table every night and a bed to sleep in. No matter what your trial, there is still so much you can be grateful for.
  3. It doesn’t matter what others think, so you do you! I’ve been accused of faking my illness and told I was just being a baby. I’ve learned to just ignore those comments because they just don’t understand. Do what makes you happy!
  4. It’s ok not to be perfect. Your best is your best and that’s enough.
Though I do not feel much better than I did at the beginning, I have made it so far. I have a long road ahead of me, but I have the best people walking with me. If you have a chronic illness, hold onto hope because you can do this. Life is hard for everyone so if you don’t have a chronic illness, remember that you can do this. One of the biggest things that has helped me through this long adventure is finding a purpose for myself. I have learned to love new things such as playing the guitar, writing calligraphy, and serving others. My hope is that I can bring a sense of purpose into the lives of those who also suffer from a chronic illness. Whether or not you suffer from a chronic illness, or whether or not you know someone who does, I ask you to please help me to get the word out or to donate if you can. Every dollar counts and will go to making the lives of kids and teens with chronic illness happier!
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Here are some snippets of the roller coaster I have been on. It's ok to be real sometimes.
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    Neeley, the Founder of Neeley's Chronic Joy Foundation

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