LiveOn.org

LiveOn.org

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Providing hope, purpose, and connection to the chronically ill and their caregivers.

LiveOn.org is a non-profit community established to support the millions of chronically ill who suffer from post-infection diseases, such as ME, long-COVID, POTS, EDS, MCAS, NCS, Chronic Lyme/MSIDS, among others. These are multisystemic diseases that simultaneously affect the brain, nerves, muscles and most every vital organ–manifesting as chronic pain, cognitive dysfunction, and fatigue. Through

Photos from LiveOn.org's post 12/29/2022

Here’s your Thursday reminder to ! Which one resonated with you the most?

Photos from LiveOn.org's post 12/27/2022

Here’s your Tuesday reminder to stop and make time for yourself. The holidays are a lot for anyone. Give yourself that break you so rightfully deserve.

Photos from LiveOn.org's post 12/22/2022

Here’s your Thursday reminder that you have worth and are destined to become the greatest version of yourself. Keep hanging in there, even when it’s tough 🤍

Photos from LiveOn.org's post 12/20/2022

Here’s your Tuesday reminder that you need to put yourself first in order to help others. Keep on pushing forward and “Doing Today”

Photos from LiveOn.org's post 12/10/2022

Let’s this Saturday! Remember that your struggles now are what will define you later. Keep pushing forward and fighting your fight. You’ve got this.

Photos from LiveOn.org's post 12/06/2022

Here’s your Tuesday reminder that you are worthy, you are loved, and that prioritizing yourself in times of struggle will always pay off.

What did you need to hear today?

Photos from LiveOn.org's post 12/02/2022

Here’s your Friday reminder to stay positive, to stay hopeful, and to remember that everything is going to work out. This moment is tough, but you are tougher. Keep fighting and keep embracing your true self. We believe in you.

11/29/2022

shares how impacts his everyday life.

Karden finds safety and comfort through his good fortune and looking for ways in which things were “truly meant to be”.

Thank you Karden for taking part in our campaign and sharing how you .

Photos from LiveOn.org's post 11/23/2022

Here’s your Wednesday reminder to remain positive, to keep going, and to look for the good in the world. There’s so much good around you, you just have to look for it.

What’s your favorite mantra from today’s post?

11/23/2022

shares how she uses in her everyday battle with Ulcerative Colitis.

“Do today. This day. This hour. This minute.

That’s all we’re guaranteed and it’s all we truly have 🤎

When I was first diagnosed with ulcerative colitis in 2017 and later got to my sickest in 2018, my mind was constantly on the future - Will I be able to work? Will I ever be loved by someone else? Will I ever move my body again in the ways that I love? Will I be able to start the business I want to? The list went on and on…

I was constantly trying to live in the future, trying to “figure it out,” making me feel overwhelmed, anxious, and quite frankly, hopeless.

The idea of DoToday is something that  founder Jokob’s mom started saying to him when we found himself in similar dark spiraling thoughts and something that in many ways have tried to remind myself of over the years - through meditation, through mindset work and through gratitude

I realized that worrying about the future didn’t actually help me DO anything. It didn’t truly help me “figure anything out.” Because the future isn’t truly in our control, all we can control is the now - how we choose to treat ourselves, how we choose to be gentle with our bodies and minds, how we choose to live this day.

So I wanted to remind you to also DoToday. This day. This hour. This minute. That’s all you have to do.”

Thank you for sharing Nat! We love and support everything you do 🤍

11/22/2022

The incredible .agle shared her story on how impacts her.

Famous for her YouTube channel full of ME/CFS recovery stories and for fully recovering herself, she says that giving herself an extra 30 minutes of “me” time every morning is a real game changer.

How do you choose to ?

Photos from LiveOn.org's post 11/18/2022

Let’s end the week on a positive note! In case no one told you today, you’re worthy of love, you’re worthy of unconditional support, and you’re allowed to be your true self 100% of the time.

Keep climbing and just .

Which tip stuck out to you the most?

Photos from LiveOn.org's post 11/16/2022

Here’s your Tuesday reminder that you have the power to change within you. Keep trying, keep working, and keep healing.

What reminder stuck out to you the most?

Photos from LiveOn.org's post 11/11/2022

Here’s a gentle Friday reminder that we are all constant works in progress - always learning, improving, and trying new things.

Share with us below the reminder that stuck out to you the most 👇

Photos from LiveOn.org's post 11/10/2022

For those of you just trying to - remember to be consistent with the little things. Be kind to yourself, take care of yourself, and most importantly, always seek help before you desperately need it.

Hang in there everyone!

Photos from LiveOn.org's post 10/25/2022

Here’s your Tuesday reminder that you have worth and choosing to invest in yourself is your greatest asset.

Keep strong and remember, just !

Photos from LiveOn.org's post 10/18/2022

When living with a chronic illness, it’s important to remember that you do not need to have everything figured out in order to have worth, to be seen, or to be loved.

You are worthy just the way you are.

You do not need to be 100% healthy to do the things you want or to have the things you want.

You are just as special as the person next to you.

Remember, just .

Photos from LiveOn.org's post 10/13/2022

This is a message to everyone fighting their fight and “doing today”.

I know you’re struggling, I know you’re fighting, and I know that each day is a different challenge.

Believe me, I’m in the same fight myself.

Keep your head up and start focusing on the small wins.

Whether you walked a mile or simply made it out of bed today - a win is a win. Count it.

You’ve got this, I believe in you.

- Jakob

Photos from LiveOn.org's post 10/11/2022

Chronic illness can make you feel so misunderstood, alone, and confused.

We get that.

Take each day as it comes, and remember to always look out for the small things.

Put simply, just .

Photos from LiveOn.org's post 04/26/2022

has battled POTS, hEDS, Psychogenic Seizures, and FAI hip impingement for a number of years now. During her journey, Holly faced multiple instances of medical gaslighting - in which professionals labelled her condition as being “in her head” or as anxiety. Holly encourages others to find hope in their chronic illness by connecting with other “medical zebras” and by following our core of belief of .

Want to read Holly’s full story? Visit the link in our bio.

Photos from LiveOn.org's post 04/21/2022

Patients who suffer from POTS are often met with disbelief, gaslighting, and other sorts of trauma before they reach a diagnosis. The end result - the average POTS diagnosis takes 5 years and 11 months. Because of this, patients are often caught “too late” - leading 25% of patients disabled and unable to work or attend school.

LiveOn.org seeks to improve this by simplifying and shortening the journey towards a diagnosis. On our Pathways section of our website, you will find a series of resources provided by our various medical partners. This is designed to enable the patient to empowered, informed, and able to advocate for themselves at their next doctor’s visit.

Want to help us in this journey? Donate today at the link in our bio.

Thank you to for providing us with today’s statistic. Visit the link in our bio to learn more.

Photos from LiveOn.org's post 04/19/2022

has battled numerous vascular compression syndromes for over twenty years. During this time, Dan founded his own film company, , to create and produce stories of individuals going through challenges - both physically and mentally. Dan has become an inspiration to many for his tenacity, courage, and determination to not only improve his health, but improve the livelihood of everyone he meets.

Read his full story now by visiting the link in our bio.

Photos from LiveOn.org's post 04/14/2022

Some days can feel like they never end. 

Symptoms are at an all-time high. 

All you want to do is go to sleep, but your body simply won’t let you. You’re tired, yet wired at the same time. 

Your head is pounding, your throat is swelling, and the fatigue is so debilitating that you can’t move a limb. 

We get it - chronic illness can feel like the whole world is collapsing around you sometimes.

Hang in there. You’ve been in this position before, you will get out of it once again. You are far stronger than you think you are.

Remember - Just

Photos from LiveOn.org's post 04/12/2022

There is a common myth that POTS is a rare disease. This couldn’t be further from the truth. POTS is a very common disease, but is often misdiagnosed because of the lack of medical education on the disease and its similarity to other diseases. Do you have POTS? Share your POTS story in the comments.

Thank you to our friends for supplying today’s statistics.

Click the link in our bio to read more.

Photos from LiveOn.org's post 04/08/2022

was diagnosed with Ulcerative Colitis at just twenty-one years-old. Today, she has developed her own chronic illness mindset coaching business - leading fellow chronic illness sufferers to a path of empowered acceptance.

Natalie has helped LiveOn.org since the summer of 2021 and is now a brand ambassador. We sincerely appreciate her support and wisdom.

Want to read her full story? Click the link in our bio.

Photos from LiveOn.org's post 04/06/2022

This month we are highlighting the effects of Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a condition in which a change from lying to standing causes an abnormally high increase in an individual’s heartbeat. Similar to ME, POTS is a multi-systemic disease that effects all parts of the body. Common symptoms include lightheadedness, trouble thinking, blurred vision, rapid heart rate, fatigue, weakness, and countless others. POTS is often seen as a primary or secondary illness to many other diseases including, ME, MCAS, EDS, Fibromyalgia, IBS, and others. If you feel you may have POTS, check out our Pathways page on our website to learn more.

As always, please share if you find this information helpful!

Photos from LiveOn.org's post 04/01/2022

Diagnosing Myalgic Encephalomyelitis (ME) is a long and complicated process. Due to the lack of understanding of the disease, many doctors are forced to “check-off” a series of diagnoses for a particular patient before reaching a full ME diagnosis. Because of this, the average ME diagnosis takes 980 days. In an effort to shorten and simplify this journey, LiveOn.org has partnered with a variety healthcare professionals to provide resources to patients that are designed to get them to a diagnosis and improve their livelihood.

If you think you may have ME, take a look at the link in our bio and provide the diagnostic guidelines to your healthcare professional at your next visit.

Want to learn more about ME? Visit our Pathways tab on our website for a full glossary of resources from our various partners.

03/24/2022

Meet this week’s ambassador, ! Annika is from Ontario, Canada and became ill with ME when she was just sixteen years old after contracting an unknown virus.

After contracting the virus, her health began to deteriorate significantly and she was forced to take a leave of absence from school and isolate herself from her peers. Ensuing her struggles, Annika underwent over two years of testing and searching for a diagnosis before coming in contact with LiveOn.org. The resources found on our website enabled her to show her doctor what she was going through and ultimately achieve a diagnosis.

Annika has been chronically ill for over four years, yet continues to remain positive. Recently, she started university and is studying public health to one day improve policies, programs, and practices that contribute to systemic discrimination of those with disabilities.

We are beyond grateful to have Annika’s support and feel very humbled knowing that she is the first person to achieve a diagnosis through LiveOn.org.

Want to read her full story? Click the link in our bio.

03/22/2022

Recent studies indicate that people with ME are 6x more likely to attempt su***de. This an alarming figure. ME has been noted by several studies to have lowest quality of life among all chronic illnesses – lower than Cancer, Stroke, Diabetes, Renal Failure, and MS. As a result, the leading cause of death among those with ME is su***de.

LiveOn.org seeks to put an end to this suffering. We aim to provide tools, resources, and connections to those who suffer from ME and chronic post-infection diseases to lead them to a better quality of life.

Help us on our mission by donating today.

View this study by visiting our link in our bio.

03/18/2022

It’s Friday. We know that this day often can bring some sort of sorrow for many of you. After a busy week of work, school, or other activities, you’re drained – emotionally and physically. 

You can feel a flare coming on. A day that used to be so exciting for you, no longer is. 

You watch as your friends go out, have drinks, and share a laugh – all while you’re stuck in bed. 

It’s not right and it's not fair. 

This isn’t the life you planned, but that’s ok. 

You will find a way to get up. You will find a way to find the joy in things again. You will make it out of this. It’s all just going to take some time.

Just and tomorrow will fall in place. We promise you better days are coming.

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Videos (show all)

@kardenrabin shares how #DoToday impacts his everyday life. Karden finds safety and comfort through his good fortune and...
The incredible @raelan.agle shared her story on how #DoToday impacts her. Famous for her YouTube channel full of ME/CFS ...

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PO Box 16882
South Salt Lake, UT
84116

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