Sleepy American Rock Star

Please support our #sleepyamericanhero the one our only Rachel Nesmith please add Her songs and playlist to your music library #americassweetheart #rachelnesmith #mayk #maykitapp #madeonmaykit #redflagchallenge #redflags101 #rachelnesmithmusic #musociansofinstagram #musicianswithnarcolepsy #musianswithfibromyalgia #musicianswithdisabilities #musocianswithcataplexy #risingvoicesofnarcolepsy 

Narcolepsy is Like a Broken Automobile Transmission

Narcolepsy is like a vehicle’s failing or slipping transmission. When your car’s transmission is working well... Every gear follows a specific number of rotations per minute  and it’s in bad shape when one can’t lock in the rpm without the gears not locking in place. You can only start at a school zone in gear 1-2. Gears 3 and 4 for 30 ,40 rpm as you need more speed.

The origin of Narcolepsy in where One very small part of our hypothalamus of those living with type one Narcolepsy with Cataplexy is housed within the hypothalamus, part of our limbic system controlling our most basic needs and drive for survival, reproduction. The immune system attacks the ventrolateral preoptic nucleus (VLPO or VLPN), obliterating the neurons secreting Hypocretin (Orexin) the chemical responsible for controlling our sleep-wake cycles. Once this happens (autoimmune response) those neurons are gone.

The brain with Narcolepsy no longer  progresses from a well evolved circadian Rhythm seamlessly changing gears from the hypnagogic Stage 1, stage 2, to the deeply tissue healing stages 3 and 4, with gradually increasing amounts of REM sleep where most of our brains long term memory and purging of nonessential memories are processing. Our Dreams happen mostly during this stage of sleep, which strongly resembles the brain waves of being awake.

Once hypocretin is gone, we become highly impaired in staying awake, breaking our sleep/ wake cycles and order. Always my brain wants to go from gear 1st to 4th gear, leaving me in a limbo of being awake and Rem paralysis simultaneously.  Hypnagogic Hallucinations and Sleep Paralysis-  you get the same helpless horrible feeling of danger as a person stranded in a clunker with a failing transmission when You onset with Narcolepsy.

As an invisible illness advocate, suffering with type 1 Narcolepsy with Cataplexy, chronic pain due to fibromyalgia and rheumatoid arthritis plus diabetes and mitral valve prolapse I’m that clunker, I look good outside but my transmission is in disrepair...a cars transmission can be replaced. My hypocretin cells can’t be replaced. So what then? My life, your lives are wrought with hard knocks. You are so strong, you care. You matter, your a Superhero.

Everyone knows the dreaded choices we made when your transmission broke, but I feel like a big loser... no one can take Narcolepsy away, not yet. How easy do Car owners have options to repair the transmission, whereas my hypocretin neurons are obliterated, and not growing back.

Each day I have no idea what gear I’ll have to battle- 2 jumping to Rem, etc. Will I need to be able to see outdoors, quoting inspiration? If the public views Narcolepsy as not as serious, but lazy, are inspired by our Narcolepsy stories, advocacy, friendship, we can Do Sleep Justice together. Www.napcave.com .

It bothered me that the media and even society doesn’t give persons with disabilities/invisible chronic illnesses enough respect/ credit. That sleepiness is lazy, we’re faking it, exaggerating our plights.  More than anything it’s all about helping people with sleeping and other invisible and visible disorders feel like they should, as they deal with pain levels so high while smiling, tear stained faces, with the fear of Cataplexy and social ignorance anywhere, this coping takes a True Superhero kind of strength, our hearts empathize deeply with anyone suffering.

My super hero name is Sleepy American. The NapCave is a very magical place where all Sleepy American Heroes recharge our superpowers with naps. Naps are magical ;)

Batman is badass and he has undiagnosed Narcolepsy with Cataplexy. Why so serious Batman? Cataplexy. The Joker is Batman’s bestie Batman loves darkness and hangs in his underground NapCave where he sleeps each day.

There are shirts that are cool like Nap Queen, but I wanted to raise awareness by getting others to start the ‘Narcolepsy, fibromyalgia ‘ talk - asking me about my shirt, dress - or compliment. I wanted my fellow spoonies to realize and remind ourselves how strong and Super we are. It never fails to inspire how many people really want to know more about invisible illnesses, Disabilities. #nncon2019

Totally wearing this #imwithsleepy skater dress @narcolepsynetwork to #nnconference2019 @napcavezzz is is please to hold our new self-esteem and social attitude campaign #dosleepjustice #sleepyAmericanheroes #defystigma booth free photography shoot of you dressed with our fun props and background as a sleepy superhero. See and feel just as you should- you are super hero living with a often misconceptioned misunderstood disorder #Narcolepsy I want you to feel like a superhero! Free pics taken emailed to you. Compliments of NapCave.com and many prize raffles too Tba later.  Together we will conquer stigma! Rachel, SleepyAmerican #narcolepsyawareness #narcolepsynotalone  @napcavezzz @sleepyamericansuperhero the NapCave is my small biz, created dedicated to defying and changing stigma and negative attitudes towards persons living with invisible illnesses/disabilities. You are a superhero. Shop NapCave- we are #notyourbasicstitch #nnconference2019 #areyouasleepheroorasleepzero

September 22nd is Many things to me: my Daddy's birthday, my MIL's Birthday, and NOW World Narcolepsy Day! This is our Inaugural Celebration of Narcolepsy Awareness! Please be a Sleep Hero with The NapCave and 25 Narcolepsy Organizations as we celebrate our momentous Inaugural Event! #balloons #wonderwoman  #worldnarcolepsyday #narcolepsylife #narcolepsyawareness #september222019 #international next #interstellar #napcave #sleepyamerican #sleephero

Narcolepsy is like a vehicles’s failing or slipping transmission. When your car’s transmission is working well... Every gear follows a specific number of rotations per minute  and it’s in bad shape when one can’t lock in the rpm without the gears not locking in place. You can only start at a school zone in gear 1-2. Gears 3 and 4 for 30 ,40rpm as you need more speed.

The origin of Narcolepsy in where One very small part of our hypothalamus of those living with type one Narcolepsy with Cataplexy is housed within the hypothalamus, part of our limbic system controlling our most basic needs and drive for survival, reproduction. The immune system attacks the ventrolateral preoptic nucleus (VLPO or VLPN), obliterating the neurons secreting Hypocretin (Orexin) the chemical responsible for controlling our sleep-wake cycles. Once this happens (autoimmune response) those neurons are gone. 

The brain with Narcolepsy no longer  progresses from a well evolved circadian Rhythm seamlessly changing gears from the hypnagogic Stage 1, stage 2, to the deeply tissue healing stages 3 and 4, with gradually increasing amounts of REM sleep where most of our brains long term memory and purging of nonessential memories are processing. Our Dreams happen mostly during this stage of sleep, which strongly resembles the brain waves of being awake.

Once hypocretin is gone, we become highly impaired in staying awake, breaking our sleep/ wake cycles and order. Always my brain wants to go from gear 1st to 4th gear, leaving me in a limbo of being awake and Rem paralysis simultaneously.  Hypnagogic Hallucinations and Sleep Paralysis-  you get the same helpless horrible feeling of danger as a person stranded in a clunker with a failing transmission when You onset with Narcolepsy.

As an invisible illness advocate, suffering with type 1 Narcolepsy with Cataplexy, chronic pain due to fibromyalgia and rheumatoid arthritis plus diabetes and mitral valve prolapse I’m that clunker, I look good outside but my transmission is in disrepair...a cars transmission can be replaced. My hypocretin cells can’t be replaced. So what then? My life, your lives are wrought with hard knocks. You are so strong, you care. You matter, your a Superhero.

Everyone knows the dreaded choices we made when your transmission broke, but I feel like a big loser... no one can take Narcolepsy away, not yet. How easy do Car owners have options to repair the transmission, whereas my hypocretin neurons are obliterated, and not growing back.

Each day I have no idea what gear I’ll have to battle- 2 jumping to Rem, etc. Will I need to be able to see outdoors, quoting inspiration? If the public views Narcolepsy as not as serious, but lazy, are inspired by our Narcolepsy stories, advocacy, friendship, we can Do Sleep Justice together. Www.napcave.com .

It bothered me that the media and even society doesn’t give persons with disabilities/invisible chronic illnesses enough respect/ credit. That sleepiness is lazy, we’re faking it, exaggerating our plights.  More than anything it’s all about helping people with sleeping and other invisible and visible disorders feel like they should, as they deal with pain levels so high while smiling, tear stained faces, with the fear of Cataplexy and social ignorance anywhere, this coping takes a True Superhero kind of strength, our hearts empathize deeply with anyone suffering.

My superhero name is Sleepy American. The NapCave is a very magical place where all Sleepy American Heroes recharge our superpowers with naps. Naps are magical ;)

Batman is badass and he has undiagnosed Narcolepsy with Cataplexy. Why so serious Batman? Cataplexy. The Joker is Batman’s bestie Batman loves darkness and hangs in his underground NapCave where he sleeps each day.

There are shirts that are cool like Nap Queen, but I wanted to raise awareness by getting others to start the ‘Narcolepsy, fibromyalgia ‘ talk - asking me about my shirt, dress - or compliment. I wanted my fellow spoonies to realize and remind ourselves how strong and Super we are. It never fails to inspire how many people really want to know more about invisible illnesses, Disabilities. #nncon2019

Kicking em' while already Down on the ground

I am at high risk of not getting the care I need. If I don't have healthcare I am essentially comatose, and that makes me feel trapped, persecuted for diseases not my fault, and freedom to Pursue life liberty and happiness.

SSI Medicaid- privatization contracted Medicaid is currently very difficult to effectively get medical care I need, u always cut provider pay, and I'm losing the ability to use my hands, profoundly severe carpal tunnel syndrome as I cannot find a neurosurgeon willing to operate on my plan (Medicaid only) - plus formulary cuts(denials after peer to peer reviews as well as exclusions of entire classes of RXs have forced me to go without coverage for my cataplexy/ narcolepsy medications- most are generics!!! sad paralytic existence like being water boarded on Inception living on Elm St... If you cut Medicaid - when u should be investing more- if really a Christian- what will become of the disabled poor in Texas? USA? I cannot Pursue happiness in R.E.M. Sleep paralysis 16 hrs a day! What's next- a prescription discount 💳 card? Or a jelly of the month membership?

DISINVINCIBLE, my Rising Voices of Narcolepsy Story

DISINVINCIBLE

Like any great superhero, my origin story is dramatic/unexpected/full of surprises.

I grew up in Duncanville, a Dallas suburb with a younger sister and two dogs named Oreo and Taffy.  I was known for being a great student in school and was especially fascinated by psychology and biology. In High School, My extracurricular activities included Academic Decathlon, Choir and my friends collectively called The Group comprised of many of my Nerdy Chic Decathletes. Every Friday we’d pile into the Mystery Machine and see the latest movie at the theater. I met my first husband in Academic Decathlon training during the summer of 1997. I graduated from high school in 1999, went to Mountain View Community College from June 1999 through August 2000, where I raked in 51 college hours.

I lived in the Dorms at Texas Woman’s University in Fall 2000 and Spring 2001, many times I would involuntarily doze during Anatomy and Physiology and my friend Crystal kidded she always had to wake me up in class, despite me being very interested and active in class. In April of 2001, I moved out of my dormitory and into a small apartment off-campus with Kenneth.

 When the Twin Towers came down, my life crashed all around. Two days after 9/11/2001, I awoke in the middle of the night to an excruciating “BOOM” unlike any loud noise I’d ever heard before, I heard and saw shadows of my family and invading troops as I was unable to move. I felt the searing heat, panic of being unable to follow loved ones into a bomb shelter... I saw and felt tall flames and smell thick smoke in the air of my bedroom - I was absolutely terrified. This was World War 3 and I was about to die. I was unable to scream, but I heard the screams of those near to me crying out in horrific pain as they burned alive.  Ken shook me saying “Wake up, it's OK.”  He informed me there was no invasion in our bedroom. I was utterly perplexed and horrified as well as isolated and alone in my harrowing ordeal. This scenario replayed itself several times a night each night from this point onward.

I felt terrified at the very thought of going to sleep,  I felt afraid to close my eyes.
In addition, around that same time, I started to have trouble staying awake my college classes, and philosophy ended up in my experimental psychology notes. I took a small voice recorder to class, perplexed.

There was one time that I was at the grocery store with my then-husband at the time and we were having a discussion that made me laugh and as I felt this, my body crumbled to the ground. I was on the ground for 2 minutes, and every second of that I felt scared and wanted to move to get up. When I could move again, I got up to see other people in the store looking at us. One person looked at my ex-husband with a look thinking maybe he’d drop-kicked me to the ground somehow. I tried to explain but it was a tense and uncomfortable experience.  My relationship became very strained due to all that was going on.

As these strange incidents got worse, I searched the internet far and wide to explain my odd symptoms, and discovered I was suffering from extremely long episodes every night of sleep paralysis with hypnagogic hallucinations. I then read about another symptom, cataplexy, and had a surreal moment of absolute certainty that this was causing me to go limp at laughter. My Grandma Rita told Mom She read about Narcolepsy and thought it could be the cause of all my perplexing symptoms. Of course, I was skeptical because public stereotypes and lack of awareness of real narcolepsy never leave comical naps. However, once I looked up Narcolepsy in my encyclopedia, I couldn’t deny, I have narcolepsy with cataplexy.

I scheduled an appointment with a neurologist, who agreed it looked like Narcolepsy. Unfortunately, my Mom’s health insurance excluded all sleep disorders. No diagnosis, no sleep study, no treatment, as I waited to be switched onto my Dad’s health insurance. I struggled to finish the semester and survive Christmas in 2001. Finally, February 2, 2002, I completed a two-part sleep study: PSLT and MSLT.  I had collapsing cataplexy twice between the MSLT naps.

At the age of 21, I was diagnosed with Narcolepsy with Cataplexy. Receipt of my diagnosis was a huge relief, scary, and sad. I was relieved to know the treatment of my symptoms was finally available. I was scared about what the future would look with narcolepsy,  and I worried what would the letter ‘N’ do to others’ perception of me? How would the stigma and stereotypes about Narcolepsy negatively affect how others saw me, and would they laugh at me. My career? Driving? College?

It was 2002 when my family grieved the loss of my Great Uncle Vernon to Pancreatic Cancer. Vernon was my Paternal Grandma's big brother. After his funeral and burial, my Mom,Dad, Sister, Brother-in-Law, and I joined my Grandparents Nesmith at their home to reflect on the good times, memories we were blessed with Uncle Vernon.

I hadn't had very much sleep, and as a person with narcolepsy such can affect the severity of our symptoms. My family and I always have a great time visiting and talking to each other, and like them, I have a very active creative sense of humor at the core of my being and personality. My Sister, my Dad, and my Brother-in-Law are hilarious and make you laugh so heartily, quickly it can get dangerous for myself via cataplexy. One tiny re-quote from funny films, memories often floored me into cataplexy for many moments at a time. I had created a funny comeback to our playful debate, but  couldn't voice but a pathetic peep, TASED by Narcolepsy's Cataplexy triggered by finding my own comebacks hilarious.

My Dad didn't believe that cataplexy leaves me conscious or lucid for several to many aspects of sleep. Like millions of others uneducated that cataplexy as a common symptom of Narcolepsy, Dad Dearest was incorrect.... tons. Of course when I became a soft formless paralyzed form of muscular and connective tissue mush, Dad assumed I was experiencing a traditional sleep attack, he thought it impossible for me to behalf awake and able to willfully move.

My Grandma Vivian began saying "Oh my gosh Rachel passed out!"
Mom- "Don't make her laugh!" Omg how many times do I have to tell you."
Dad- "I didn't do it!" "It's part of the narcolepsy she passes out when she laughs. Catasomthing?"
Sister- "Mom you make it worse over panicking -Rachel hears everything and finds it funny."
Grandma- "So she passes out asleep while laughing?"
Dad- "I think so. Rachel says she is aware during this state, I don't know..."

Then Dad Said, "Rachel, if you can really hear us, the secret word is Pomegranate."

The speculations and panic ensues for 20 more minutes until this Cataplexy attack released me from its chains. I stood up slowly, smiling and laughing in my head, holding onto Mom, took 3 steps towards Dad  ...

Me- "Dad, the secret word is Fworbidwen Frwuit" (slurring my speech as I instantly recollapsed in Cataplexy). No one questions me now-- be careful - in cataplexy and sleep paralysis I can hear everything you say! 

After diagnosis, it took a few years to find a way of managing my narcolepsy. It was trial and error with medications, taking naps, educating loved ones, learning to practice self-care, doing my own research, and getting involved in the narcolepsy community via Social Media. Does anyone here remember MySpace? I shared a great group on MySpace called “Open your Eyes to Narcolepsy” from 2004-2007.

I am also living with additional health conditions, including fibromyalgia, RA, diabetes, Hepatocellular Adenomas, CNS neuropathy. As you might imagine, this makes things complicated when it comes to treatments and managing my health, as there are various considerations and issues involved. 

My symptoms of narcolepsy have improved somewhat from what they were when I was diagnosed, but I still experience symptoms daily. Due to the severity of my cataplexy, I have not been able to drive since 2003.

June 2005 Kenneth and I married. 2006 we purchased a house in The Colony, TX only to lose it to foreclosure, as well as filing for Bankruptcy. Kenneth lost his job, our health insurance. He left me two weeks prior to eviction from our apartment in April 2009. Thankfully, my Mom and Dad scraped me up off the ground, taking care of me at one of my lowest points. In the Summer of 2010, I became violently ill with a huge Hepatic Adenoma, rare blood-filled liver tumor caused by years of hormonal birth control to treat endometriosis. The threat of the tumor rupturing, causing hemorrhage and likely death was very high. My surgeon Dr. Jeyarajah saved my life performing a very risky liver resection.

While in Surgical ICU struggling to recover, unable to yet speak due to being on a respirator, I could hear my nurses laughing about my Narcolepsy symptoms and treatments. Barely able to fight for my life, my nurse was laughing about my suffering… I was hurt, angry, and shocked.

When I tell people that I have narcolepsy, often they first react like it is no big deal, UNTIL they first-hand experience full-body cataplexy from humble giggles. Then they all were frantic with fear. Most people don’t seem to know much about narcolepsy at hospitals which is especially challenging. Needless to say, I am so grateful to be alive, and I know how strong I can be especially when pushed to the brink; I am resilient and a survivor Thanks to my parents, my friends, and my Faith.

In 2012, Kerry contacted me several times on PlentyofFish.com. I agreed to a date at the Lone Star Ranch, and the most magical date.  Kerry has Obstructive Sleep Apnea, so he understands how important sleep is for overall health and functioning. We married in October 2013. March of 2014 I was about to have my second liver resection as another Hepatic Adenoma needed to be removed when my nurse and surgeon canceled because I was shockingly Pregnant! A very, very high-risk pregnancy ensued with weekly visits to several doctors, scans, diabetes management, and juggling the severity of cataplexy falls versus adjusting my prescription, tumors, and treatments. I am so amazed by how my beautiful, broken body and brain could build a fully whole, perfectly healthy new person! Never ever compare yourself to nor allow anyone to Mommy shame you into how you manage your chronic illnesses while pregnant and raising your children. Moms are the ultimate heroes of the future.

I am truly blessed with a super support network of my online, real life, and familial relationships. My parents and Kerry are my co advocates, and in 2014 during my second liver resection recovery day 4 with absolutely no medication to treat my severe narcolepsy symptoms, I was deep into Status Cataplecticus triggered by my then 4mo old daughter's Savannah’s surprise visit. My parents spent the whole day ensuring, fighting to have me finally unafraid to sleep that night.
Our now 5yr old Savannah loves to dance and sing to music, perform karaoke with me.  At night she has to give us Mama and Dada hugs before going to bed. It is really cute.

I take each day and night as they come, allowing creativity to inspire ideas on raising invisible disability awareness and advocacy, and most of all, reaching out to those not yet, newly diagnosed, misdiagnosed invisible illnesses, commodities, etc. I am a believer that the future belongs to those who believe in the beauty of their dreams (Eleanor Roosevelt), and owner of The NapCave which helps others spread awareness without saying a word. I am a believer that being a Sleep Hero is a full-time job, and if we are going to reach for maximum impact we need to wear our ‘capes’ everywhere there are people who are unaware of invisible disability, without randomly stopping strangers left and right with our story. This is where my Clothing, Home, Accessories, Etc. including original Designs spark curiosity, and I love it when people approach me, compliments are even better when you touch someone’s heart. That’s spreading A-wear-Ness. When someone out of nowhere approaches me, and has tears of joy, and says ‘Me, too.’ My heart feels so radiantly warm hugs make my day. To not feel alone, that's the magic. Telling teachers, doctors, anyone who asks… What is Hypocretin… It changes people at the individual level, However, this effect is where social change and attitudes towards invisible illness and disability prejudice, discrimination and Stigma originate. Changing hearts one at a time can change the world for a brighter future.

I am not a throwaway person; I am more than what I was before narcolepsy.  My inner strength and the profound ability for empathetic understanding, enjoying the little things, stubbornly pushing to succeed in feats and what I can do, and a seasonably unique perspective chronic invisible illness has had a profound effect on my life. I have the superpowers include determination, resiliency, empathetic understanding and empathetic projection. I see and feel things that are invisible to other people, and help share other’s experiences to increase empathetic understanding. One-touch and you will empathize, knowing exactly what other human experiences. Family members, friends, even strangers can be dismissive, even in the face of our awareness spreading efforts, and we must take action, take a stand to continue spreading awareness of the invisible illness and the true empathetic understanding and support for persons with chronic illness, including narcolepsy with cataplexy.  Working with Project Sleep as a Rising Voices of Narcolepsy advocate, I am now part of a crew of superheroes working to raise awareness of narcolepsy across the country and around the world. We are hunting down stigma and misconceptions and sharing our stories to enlighten people everywhere. By using my unique abilities to help others, I hope others will know they are never isolated, Narcolepsy Not Alone.  True strength and power come from the ability to weather the most challenging of storms life can throw at us. Grit, Humility, Determination, and Dedication to work towards a better future for those of us living with chronic, invisible illnesses and disabilities are key to accomplishing a paradigm shift in attitudes towards stigma and social justice.