Voices Across America

Narcolepsy, Cataplexy, The Nap Cave, and Project Sleep

rachel n

Rachel

State: Texas
Congressional District: TX26

Diseases

Chronic Pain, Gastrointestinal Disease, Immune Disease, Liver Disease, Mental Health, Neurological Disease, Rare Disease

Issues and Challenges

Rachel has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Medical Records Access, Rare / Underserved Disease, Disability, Invisible Illness, Job Insecurity / Loss, Prior Authorization

My Story

September 11, 2001
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.

Besides, 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 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. Our 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, on 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 treatments of my symptoms were finally available. I was scared about what the future would look like living 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?

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 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 and our health insurance. He left me two weeks before 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, a 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 at how my beautiful, broken body and brain could build a fully whole, perfectly healthy new person! Never 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's 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 another human being 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 invisible illnesses 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 lll 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.

#Narcolepsy #Cataplexy #Fibromyalgia #RheumatoidArthritis #HepatocellularAdenoma #CNSNeuropathy

My Motivation and Inspiration

I’m making the World a better place “One Melody at a Time” . Why do I feel so confident that music can change public perception and reduce stigmatization, discrimination? The answer lies in science. Pop culture is the common denominator for the formation of societal norms and ideals.

When #narcolepsy is badly portrayed #stereotyped in film/music, the audience believes narcolepsy with #cataplexy must be Fairytale #napland.

When the baseline audience only consumes pop culture, the quality and accuracy of the portrayal determines public perception.

If we are wanting to improve the accuracy of public opinion and “common knowledge “ we must provide a realistic understanding of the nature of a topic. We must provide plenty of relatable , accurate #portrayals of said topic(s), including disability, race, ethnicity, religion, sexual orientation/identity, body type, politics etc. to effectively improve misconceptions.

Music, TV, and book portrayals are extremely important in putting Incorrect stereotypes and Stigma to Bed.

I have reached 1000’s of fans and fellow musicians with my eye opening lyrics and music.
Now I hear fellow Sleepy Peeps (my fanbase) very often message me how my lyrics made them feel less alone and my non narcolepsy fans tell me that they better understand Narcolepsy symptoms and how my life is Not Fairytale
Nap Land.

#risingvoicesonarcolepsy #Rachelnesmithmusic #maykitapp #dreamchallenge #narcolepsywithcataplexy #sleepparalysis #sleepparalysisdemon

#singersongwriterartist #singersongwriter #singersongwriterlyricist #singersongwriterproducer #singersongwriterwithnarcolepsy #narcolepsy #narcolepsywithcataplexy #type2narcolepsy #narcolepsystruggles #risingvoicesofnarcolepsy #lifewithnarcolepsy #typeonenarcolepsy #facesofnarcolepsy #happynapyear and may every day bring joy and resting is rejuviating ! Hope is our #superpower#sleepyamerican#sleepyamericanbadass#sleepyamericanhero

I’m going to Change the world with my voice & hear it loud. No more suffering, no men hurting each other. Let’s be a friend, not hateful men. Modern music rarely goes beyond the status quo. Are you tired of not being represented accurately in lyrics? Do u wish people understood what it’s like living with hardships and disabilities? Are mainstream arts making you gag at their over used synthetic bubble gum pop? That’s where #rachelnesmithmusic shines. I sing about things that matter, with a strong mission of combating incorrect stereotypes and misconceptions about my Sleeping Disorders : eg #narcolepsywithcataplexy #treatmentinducedcentralsleepapnea #rachelnesmithmusic I’m making the World a better place “One Melody at a Time” . Why do I feel so confident that music can change public perception and reduce stigmatization, discrimination? The answer lies in science. Pop culture is the common denominator for the formation of societal norms and ideals.

When #narcolepsy is badly portrayed #stereotyped in film/music, the audience believes narcolepsy with #cataplexy must be Fairytale #napland.

When the baseline audience only consumes pop culture, the quality and accuracy of the portrayal determines public perception.

If we are wanting to improve the accuracy of public opinion and “common knowledge “ we must provide a realistic understanding of the nature of a topic. We must provide plenty of relatable , accurate #portrayals of said topic(s), including disability, race, ethnicity, religion, sexual orientation/identity, body type, politics etc. to effectively improve misconceptions.

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rachel n

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