sleepyavon-blog-blog

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Hi I have #narcolepsy with #Cataplexy it’s more common than you think. As a rising voice is a Narcolepsy Advocate I’m feeling obligation to continue raising awareness about a disorder that affects every aspect of my life every single day. Getting things done …It’s all about Julie Flygare’s Quote “I can do anything they can’t do everything.” Pacing is key. Self forgiveness and understanding my body could end up a grumpy fleshy boneless-like mess at any emotional or fighting sleepiness at any moment is tough. And I yearn for a more educated and empathetic world for all. @project_sleep World Narcolepsy Day is September 22nd which shares itself with two special people in my support system, my Dad David Nesmith and my Mother in Love Janie Harrison. So September 22nd is so meaningful to me. Would you celebrate with us? And wish my dad and Mom in law a most happy Birthday? 🎊 I want to make the music on iTunes more diverse re my challenges with being a person with severe Narcolepsy with Cataplexy. My Debut album Disinvincible as an independent artist is coming soon! When the #twintowers came down, my life came crashing all around. #september11th2001 #september11th #narcolepsy #sleepparalysis #weremember911 #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. And when you do you’re doc won’t be your therapist. All the hurt, loss, we must seek #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek #rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia #kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Winn Ridge, Aubrey, TX) https://www.instagram.com/p/CTwGDzKLGkC/?utm_medium=tumblr

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Yes I have #narcolepsy with #Cataplexy it’s more common than you think. As a rising voice is a Narcolepsy Advocate I’m feeling obligation to continue raising awareness about a disorder that affects every aspect of my life every single day. Getting things done …It’s all about Julie Flygare’s Quote “I can do anything they can’t do everything.” Pacing is key. Self forgiveness and understanding my body could end up a grumpy fleshy boneless-like mess at any emotional or fighting sleepiness at any moment is tough. And I yearn for a more educated and empathetic world for all. @project_sleep World Narcolepsy Day is September 22nd which shares itself with two special people in my support system, my Dad David Nesmith and my Mother in Love Janie Harrison. So September 22nd is so meaningful to me. Would you celebrate with us? And wish my dad and Mom in law a most happy Birthday? 🎊 @remrunner I wrote Wack Ass Deams bc I love the beat of Cardi B’s original, but also make the music on iTunes more diverse re my challenges with being a person with severe Narcolepsy with Cataplexy. My Debut album Disinvincible as an independent artist is coming soon! This single is already available on iTunes. When the #twintowers came down, my life came crashing all around. #september11th2001 #september11th #narcolepsy #sleepparalysis #weremember911 #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. And when you do you’re doc won’t be your therapist. All the hurt, loss, we must seek #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek #rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia #kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Winn Ridge, Aubrey, TX) https://www.instagram.com/p/CTjXWsGi-4p/?utm_medium=tumblr

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Yes I have #narcolepsy with #Cataplexy it’s more common than you think. As a rising voice is a Narcolepsy Advocate I’m feeling obligation to continue raising awareness about a disorder that affects every aspect of my life every single day. Getting things done …It’s all about Julie Flygare’s Quote “I can do anything they can’t do everything.” Pacing is key. Self forgiveness and understanding my body could end up a grumpy fleshy boneless-like mess at any emotional or fighting sleepiness at any moment is tough. And I yearn for a more educated and empathetic world for all. @project_sleep #WorldNarcolepsyDay is September 22nd which shares itself with two special people in my support system, my Dad David Nesmith and my Mother in Love Janie Harrison. So September 22nd is so meaningful to me. Would you celebrate with us? And wish my dad and Mom in law a most happy Birthday? 🎊 @remrunner I wrote Wack Ass Deams bc I love the beat of Cardi B’s original, but also make the music on iTunes more diverse re my challenges with being a person with severe Narcolepsy with Cataplexy. My Debut album Disinvincible as an independent artist is coming soon! This single is already available on iTunes. https://www.instagram.com/reel/CTUvFeuCNaH/?utm_medium=tumblr

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#knownarcolepsy #worldnarcolepsyday #worldnarcolepsyday2021 #sleepyamericanhero #risingvoicesofnarcolepsy #narcolepsyawareness #napsarelife I’m a real life Superhero and trained public speaker with Narcolepsy with Cataplexy whom believes people with disabilities are Superheroes. New Full song inspired by @iamcardib @megtheeestallionnnn #WAP parody #WackAssDreams #WAD #narcolepsyawareness Lyrics: I’m a certified freak when it comes to sleep That’s on Narcolepsy Makes your Sleep cycle weak Yeah Narcolepsy my pillows so cushy I look asleep, Whenever we meet You’re just so funny Make my knees go weak Someone snores in this house x3 My Cpap is clean, Sleep apnea is mean Wear your mask, A simple little task. A rap about my Naps I like them Long is That so wrong? More Cushion for the Snoozing No I’m not heavy boozing My Hypocretins I’m losing Sleep Game on Sleep Paralysis Demon. I’m a certified freak when it comes to sleep That’s on Narcolepsy Makes your Sleep cycle weak Yeah Narcolepsy my pillows so cushy I look asleep, Whenever we meet You’re just so funny Make my knees go weak Someone snores in this house x3 My Cpap is clean, Sleep apnea is mean Wear your mask, A simple little task. A rap about my Naps I like them Long is That so wrong? More Cushion for the Snoozing No I’m not heavy boozing My Hypocretins Now I’m losing Sleep Game on Sleep Paralysis Demon. Oh Baby I’m a Freak Nightmares so real I’m so scared for this reason Make me laugh I’ll instantly collapse Think I’m weak? I prove you wrong This is why I sing this song A beautiful world Of Which I am dreaming All the stigmas Leave my soul bleeding. All Lives Matter I Status Cataplecticus In Rebound Cataplecticus No I’m not Heavy Boozing Stop Disenfranchised Truptweeding I’m Disabled Silence my vote u b Trippin. #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #sleepin2020 #raredisease #rarediseaseweek #rarediseaseday #rarelivesmatter #cataplexy #hypocretin (at Winn Ridge, Aubrey, TX) https://www.instagram.com/p/CS6GRoriLPv/?utm_medium=tumblr

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We found the #SecretRoom in #UnicornVomit Dallas TX #deepellum #interactiveartexhibit #interactiveartinstallation I think I finally found my favorite place to nap. https://www.instagram.com/reel/CS4NkVtCIrw/?utm_medium=tumblr

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Three years ago you left us When We saw ur absence your Facebook Spoonie Friends Paniced. I am so sorry we never saw it coming #shanannrzucek #bravelikebella #carefreelikecece #chriswattsisamonster I just can’t take any more pain! Yesterday we memorized my Uncle Jim and Grandpa yesterday. Last month I had to pay a visit when we met. I love ❤️ so (at Dallas, Texas) https://www.instagram.com/p/CSVLYB7iJ04/?utm_medium=tumblr

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Snow cones in the #celinasquare (at Celina, Texas) https://www.instagram.com/p/CRvPOawszK4/?utm_medium=tumblr

[sleepyavon-blog-blog]

Happy Fourth of July 2021! Back to watching fireworks in groups! @kerryharrison50 @momof2dters #kaboomtown in #addisontx is back again after skipping last year! I really missed meeting with groups during #covid_19 ! God Bless America may we work tirelessly to fight for eachother, have more empathy and get justice for everyone! #happydisabilitypridemonth #disabilitypride #americanswithdisabilitiesact too! (at Addison Circle Park) https://www.instagram.com/p/CQ5HHDgs01l/?utm_medium=tumblr

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Happy Disability Pride Month! Hey I’m Rachel and I believe persons with chronic illness and disabilities are Superheroes. Empathy is our superpower we reflect our light onto others going through trials most never encounter. A belief that healthcare access is a human right. That we should matter by society but we don’t. So we fight another day, or three hours of status cataplecticus. #putstigmatobed #napcave “When you are chronically ill You must celebrate all little triumphs, because It takes so much hard work and perseverance plus strength to achieve. Normals may win the race, but they aren’t running uphill with a bolder on their back. Until #blacklivesmatter, #disabledlives can’t matter.” Rachel Nesmith I’ve lost more Weight! No more foot ankle swelling nor highBP since my cardiologist adjusted my heart medicine as well as eating a ‘ketoesk” diet! Down from 230 to 177 so far! Here’s the proof! #Accountability #hypertension #edema #weightlossjourney When the #twintowers came down, my life came crashing all around. #september11th2001 #september11th #narcolepsy #sleepparalysis #disabilitypridemonth #disabilitypride #disabilityadvocate https://www.instagram.com/p/CQ0w7Pti-JC/?utm_medium=tumblr

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Been a hard week Uncle Jim and grandpa Nesmith passed away, Savannah was diagnosed with #Autism this week. #Rip Grandpa and Uncle Jim! Hard week! (at Winn Ridge, Aubrey, TX) https://www.instagram.com/p/CPURrMUDIVT/?utm_medium=tumblr

[sleepyavon-blog-blog]

Being #awake is #overrated #yes #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek m#rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy Project Sleep is a bright light in our lives because It’s founder - Julie does what I always dreamed of since onset. Project Sleep stands up and out for all sleep disorders, like sleep apnea. Thank you... for doing sleep justice #teamnapcave https://www.instagram.com/p/CNrIxZRDZwM/?igshid=ecnxxvfvkw4i

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#narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. And when you do you’re doc won’t be your therapist. All the hurt, loss, we must seek #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek m#rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy https://www.instagram.com/reel/CNf2AD-DG0y/?igshid=7vknxhcdc2ub

[sleepyavon-blog-blog]

Wack Ass Dreams , idiopathic Hypersomnia, Naps, Welcome to the Sleep Show, and Rachel the Riveter now on #iTunes a #Spotify!Do you know how to change how people portrayal of sleepiness and disability? Make new pieces of pop culture and media. Sleep week #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. And when you do you’re doc won’t be your therapist. All the hurt, loss, we must seek #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek #rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Dallas, Texas) https://www.instagram.com/p/CMkpx_9DAem/?igshid=1e6726tyjpz04

[sleepyavon-blog-blog]

If my dreams could run a Race I would win hands down every time without question! I believe persons with chronic illness and disabilities are Superheroes. Empathy is our superpower we reflect our light onto others going through trials most never encounter. #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek m#rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Dallas, Texas) https://www.instagram.com/p/CMf884_j5Wp/?igshid=e3av1two9sm1

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I’m Rachel the Riveter Never a Quitter Enough to make you shiver I got the strongest liver My Twisted Sister Mom’s Heart Ripper This is the last time I’ll be your caped Crusader Not so nice to meet ya Your heart’s Full of piss Yes who is Dis? Ignorance is bliss Called me a Trump Lover Gee that’s rich Yes I’m Rachel the Riveter Perspective Pivoter Fragmented Sleeper Painful warrior Whey can’t they see All the strength within? Diseases are not character Flaws! The chronic suffering make me A perseveration badass Let me take you to class I miss my Hypocretins And Xyrem for once can I close my eyes Without a sleep Paralysis Demon taking over? Healthcare care so greedy Like that Oh the horrors we’ve endured . I’m Rachel the Riveter Together we are stronger Stuck in this horror together Head concussions, broken wrist, foot fractured in 3 spots. When narcolepsy came my life took a nosedive Where are those five years I could drive kkkkk it was like another time, a-fairy tale Sublime ecstasy for what life had in store for me. Let love rule you Know your strength On the throne of life you rank! I believe persons with chronic illness and disabilities are Superheroes. Empathy is our superpower we reflect our light onto others going through trials most never encounter. #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek m#rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Dallas, Texas) https://www.instagram.com/p/CMfkIKdj9FN/?igshid=1lof3tvhtul8w

[sleepyavon-blog-blog]

I’m Rachel the Riveter Never a Quitter Enough to make you shiver I got the strongest liver My Twisted Sister Mom’s Heart Ripper This is the last time I’ll be your caped Crusader Not so nice to meet ya Your heart’s Full of piss Yes who is Dis? Ignorance is bliss Called me a Trump Lover Gee that’s rich Yes I’m Rachel the Riveter Perspective Pivoter Fragmented Sleeper Painful warrior Whey can’t they see All the strength within? Diseases are not character Flaws! The chronic suffering make me A perseveration badass Let me take you to class I miss my Hypocretins And Xyrem for once can I close my eyes Without a sleep Paralysis Demon taking over? Healthcare care so greedy Like that Oh the horrors we’ve endured . I’m Rachel the Riveter Together we are stronger Stuck in this horror together Head concussions, broken wrist, foot fractured in 3 spots. When narcolepsy came my life took a nosedive Where are those five years I could drive kkkkk it was like another time, a-fairy tale Sublime ecstasy for what life had in store for me. Let love rule you Know your strength On the throne of life you rank! I believe persons with chronic illness and disabilities are Superheroes. Empathy is our superpower we reflect our light onto others going through trials most never encounter. #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek m#rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy (at Winn Ridge, Aubrey, TX) https://www.instagram.com/p/CMfjycGjNBl/?igshid=amnnxyrrmqmu

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Wack Ass Dreams now on #iTunes a #Spotify! Do you know how to change how people portrayal of sleepiness and disability? Make new pieces of pop culture and media. Sleep week #narcolepsy #worldnarcolepsyday2021 #suddenlysleepysaturday2021 #knownarcolepsy #sleepin2021 #wheniwakeup Narcolepsy: Not Alone Grab my hand - #narcolepsy is a lot more common most people don’t know they have it. And when you do you’re doc won’t be your therapist. All the hurt, loss, we must seek #narcolepsyfriends #narcolepsyawareness #narcolepsy #narcolepsynotalone #raredisease #rarediseaseweek #rarediseaseday #rarelivesmatter #rarediseaseday2021 #cataplexy #hypocretin #idiopathichypersomnia#kleinlevinsyndrome #straightouttahypocretin #wackassdreams #goodatnaps #knownarcolepsy I’m a certified freak when it comes to sleep That’s on Narcolepsy Makes your Sleep cycle weak Yeah Narcolepsy my pillows so cushy I look asleep, Whenever we meet You’re just so funny Make my knees go weak Someone snores in this house x3 My Cpap is clean, Sleep apnea is mean Wear your mask, A simple little task. I rap about my Naps I like them Long is That so wrong? More Cushion for the Snoozing No I’m not heavy boozing My Hypocretins Now I’m losing Sleep Game on Sleep Paralysis Demon. Oh Baby I’m a Freak Nightmares so real I’m so scared for this reason Make me laugh I’ll instantly collapse Think I’m weak? I prove you wrong This is why I sing this song A beautiful world Of Which I am dreaming All the stigmas Leave my soul bleeding. All Lives Matter?smh Now I’m in a Status Cataplecticus Nightmare No I’m not Heavy Boozing Stop Disenfranchised Truptweeding I’m Disabled Silence my vote u b Trippin https://www.instagram.com/reel/CMSMhDQDoaX/?igshid=1y1urspyc65u6