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    Life, Illness, and Impact: Conversations with Julian Van Horne
    Chronic IllnessFeaturedFriends in the FightUncategorized

    Life, Illness, and Impact: Conversations with Julian Van Horne

    by Allie Cashel April 3, 2019May 1, 2019
    written by Allie Cashel

    We covered a lot of ground during our Facebook Live interview with Julian Van Horne last week. Julian is an EDS warrior and spoke about the power of self advocacy and pursuing your passion. He and Emily also discussed finding work that focuses on empowering people in the chronic illness community, navigating relationships with chronic illness, and Julian’s experience as an LGBTQ+ and chronic illness advocate.

    “If I am helping one person, I am happy.”


    If you missed the interview, don’t worry! Tune in to watch their full chat below.

    Here are a few highlights from Julian and Emily’s conversation…

    Finding support.

    When he first started sharing his story publicly, Julian was nervous. “I first started speaking up on Instagram to connect with people and relate to people. At that time in my life, I felt really alone, and I didn’t know anyone else in my situation so I started telling my story. People started liking what I was saying and I started talking and growing and reaching out to new people.”

    Before he knew it, Julian was part of a community that could empathize with his experience and support him in times of need.

    “It helped me on my journey to accept myself and what I was going through. I felt empowered by that and that I could actually talk about it.”

    This resonated with Emily. “I feel like going through chronic illness, whether you look like you are or present as someone who is going through challenges, people are always going to judge you,” Emily said. “People are always going to talk about you, and the more that you can say this is who I am, this is what I am going through, take it or leave it. I find that extremely empowering about your story.”

    You are your best advocate.

    Throughout the conversation, Julian shared insight into his life as an advocate, both for the chronic illness and the LGBTQ+ communities. While sharing some advice for people in both of these communities Julian said, “Keep going and keep doing what you are going to do, unless it is dangerous or abusive. You have to take the risk because it is your life and you are the only one that lives that life, it is not your parent’s life, it is not anyone else’s.”

    “No one is going to do it except for you,” Emily agreed. You need to put on your pants and tie your own shoes and get up in the morning.” And every move, every victory, every moment of personal advocacy makes you stronger.

    Thank you Julian for joining us this month on Facebook Live and for sharing your story. Stay tuned for more conversations from the Mighty Well community, coming soon.

    Want to connect with our community? Join us in our group, Friends in the Fight and share your story!

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  • Meet Mighty Model: Sarah Dame, Rare Disease Advocate and Ehlers Danlos Syndrome Warrior

    by Allie Cashel March 29, 2019March 29, 2019

    Our Mighty Well Models all have direct, lived experience with chronic illness, either as a patient themselves or as a…

    0 FacebookTwitterPinterestEmail
  • Meet Mighty Mentee and Epilepsy Warrior: Zachary

    by Allie Cashel March 8, 2019March 13, 2019

    Back in 2012, seven year old Zachary received news about a very special surprise. The Rhode Island based nonprofit, Children’s…

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  • Thriving Through Transition: Conversations with Kirsten Curtis

    by Allie Cashel March 5, 2019April 3, 2019

    Just last week, Kirsten Curtis joined Emily on our monthly Facebook Live broadcast to discuss how to cope with people…

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  • Meet Mighty Model, Max Logan: Athlete, Lyme patient, & Mighty Well Intern

    by Allie Cashel February 4, 2019February 20, 2019

    Like our models, everyone on the Mighty Well team has direct, lived experience with chronic illness, either as a patient…

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  • New Year Goal Setting Strategies for Chronic Illness Warriors

    by Ariela Paulsen December 31, 2018August 29, 2020

    How do you go goal setting without setting yourself up for failure?

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  • Finding Purpose Despite the Challenges of Chronic Illness

    by Emily Levy December 28, 2018December 28, 2018

    I was diagnosed with Chronic Neurological Lyme Disease during my sophomore year of college. I needed a long-term IV PICC…

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  • How The Mighty Pack Gives More Freedom to Friends in the Fight

    by Ariela Paulsen December 19, 2018August 29, 2020

    During the first week of December, we officially launched The Mighty Pack. Since then, we’ve been hearing stories about the…

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  • How to Be Grateful When You Can’t Find Things to Be Grateful For

    by Erwin Anciano November 21, 2018April 18, 2019

    Nothing keeps you feeling positive more than being grateful. Gratitude is the secret spice that makes every day feel great.…

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  • Meet Friend in the Fight, Travis Flores: An Actor with Cystic Fibrosis

    by Emily Levy November 15, 2018November 19, 2018

    Last night, I had the pleasure of sitting down with Travis Flores for a Facebook Live event to talk about his…

    0 FacebookTwitterPinterestEmail
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The mission of Mighty Well is to help patients and their caregivers turn sickness into strength. We are leading the global charge that changes the perception of patients from victims to fighters. We do this by improving the experience of being a patient. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence - and content that can help you get through the good times and the bad. It’s wellness you can wear.

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One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
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#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
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#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
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 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
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#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
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    7 Things Not To Do With a PICC Line

    October 12, 2017
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    PICC Line Complications: Preventing Common Issues

    June 22, 2018
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    Making a Choice: PICC Line vs. Port

    July 20, 2017
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CHRONIC ILLNESS

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Mighty Well - Founder - Emily Levy - Our Story

 

It all started with a cut off sock, a cute hockey player, and an 8 AM finance class. Oh, and a PICC Line. That moment inspired us to launch our first product, the PICCPerfect PICC Line Cover.

 

We know it stinks to feel defined by a diagnosis or feel like just a name on a doctor’s chart. Sounds like you? Read how our founder turned sickness into strength.

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    June 30, 2022
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    June 22, 2022
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    June 16, 2022

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mightywell_

One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
.

#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
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