Sleeper of the House: Rare Disease Legislative Advocates Week Feb 26-March 3rd 2017

Rachel Nesmith Batman napcave narcolepsy narcolepsy awareness national napping day patient story Rare Disease Rare Disease week Rare Disease Week on Capitol Hill sleep paralysis sleep week Sleeper of the House sleepy american true story World Narcolepsy Day

This Holiday Season Please Spare some Change so I, Sleepy American can create real change for many with invisible disabilities on Capitol Hill during Rare Disease Week 2017.  I represent ALL invisible disabilities from Lupus to Parkinson's, from Autism to Fibromyalgia. Having lived in extreme poverty and reliant on Government assistance in some of the saddest parts of my life. Change for Real Change #raredc2017  The only way I can make this happen for US, is if I can raise enough to cover travel... airplane, trans, taxi, hotel, meals, etc. for #RAREDC2017 Week. The State of TX will only stipend me $600, barely enough for airfare. I am a REAL person, and you will definitely see your gift in action, on Capitol Hill, via Me, Sleepy American. My Passion, my dream, your Superstar Patient Advocate with Sass! Thank you for any amount and/or shares, was the power is with you whether this materializes. If I can meet my goal, I would be so very thankful, and will work hard on the Invisible Disability and Rare Disease communities behalf. Thank You!
 Sleeper of the House  #RAREDC2017
This is my passion, my goal, the fire in my belly... Sleepy American is first and foremost an Advocate BadAss for Person's with Invisible Disabilities. Communicating effectively in print is great, video is cool, but IN Person, eye to eye, in the flesh Representing ALL of us whom struggle paying for expensive medical care, tests, sleep studies, and Orphan drugs costing a decent car... We NEED a strong voice. I am Her, I have survived ultimate lows and struggles not everyone else has as a person with very severe Narcolepsy(sleep attacks, sleep paralysis, cataplexy, hypnagogic hallucinations, etc), Fibromyalgia, Rheumatoid Arthritis, Diabetes type 2, Hypothyroidism, High BP, Peripheral Neuropathy, severe double hand to elbow carpal tunnel syndrome, Clinical Depression, and Anxiety Disorder.
I had a good middle class, relatively health life, until I went to University. Narcolepsy's sleep paralysis and hypnagogic hallucinations of WW 3 exploded 9/13/2001 ... that is right ... September 11th CAUSED my HLA Narcolepsy genes to 'expression', via extreme emotional trauma. Everytime I closed my eyes, I never slept, only HH with SP... for hours. November, Cataplexy started, December, I was collapsing, falling down stairs, etc. I knew it was a sleeping disorder, but My health insurance EXCLUDED all Sleep Medicine, citing as NOT Medically Necessary... excuse me cellular death in the brain? February I was finally on my Dad's and diagnosed. It took some years before the cataplexy, sp, hh to be adoquately treated... I was still having status cataplexus (status cataplexy/Extended Sleep paralysis youtube) several times a week BEFORE Xyrem. 2005 Xyrem really helped me not be stuck in aware-paralysis for hours.
Sleepy American's Nap Cave
I am the BEST Qualified Rare Disease Legislative Advocate. If you have known me for a long time, you know my biggest truest heart's desire dream plus life purpose is to be a voice, a LOBBY to congress to put a face, stories into Congress person's heads, hearts and Souls. 
Sleepy American is real, I am a Superheros Invisible Disabilities Advocate. This is a once in a lifetime chance, to share OUR plight, waiting for Disability, paltry social services, why drug costs must go down, or NO one will be buying the newest drugs manufactured as insurance companies have started cuting the fat so much out of Drug formularies, only a few bones are left,thus more and more companies are not covering many GENERIC Drugs, Orphan drugs... We are usually very limited in income, abilities to ambulate, NEED regular easy to get healthcare and Mental healthcare, yet those on SSI and Medicaid are faced with plan doctors jumping off the plan left and right, leaving one with the option of begging at the ER, which only helps if you are dying, not if  you are eventually gonna die.
Sleepy Change for Change
Giving Tuesday
Sleepy American Goes to Capitol Hill
We deserve the very best Health Care, not PRIVATIZED via Contrast with the state! Basically, the state sells out to private companies, Molina, Superior HealthPlan, Amerigroup, Parkland, United Health Care, etc.to make a nice profit out of denying us healthcare. We deserve Medicare.... I was in college when I became completely disabled. My parents didn't allow me to take a job, wanting me to focus on school. It's like my normal, but more boring, life was extinguished, and I got to know what hunger plus not having Neurontin for Fibromyalgia and Arthritis pain, as well as no medications for Narcolepsy: sleep attacks, sleep paralysis, Hypnagogic Hallucinations, and Cataplexy. Endorse Sleepy American via the supermarket dash, babies  included, lol! 2003 I gave up driving, I still get significant cataplexy when sleepiness hits, and esp. if I fight to stay awake /wake up. It takes me a while to feel safe to stand when someone pokes me awake. June 2005 I married my long time boyfriend, as he finally got employer benefits. Two months later, His employer dumped all insurance coverage except a crap indemnity plan.
Invisible Disabilities comes to Light
Life without Medical Insurance, unable to work or drive, married to a man whom can but won't work dependably, habitually fired from any job for lack of work, getting along, including the USPS in 2007. This is when I begged for food, went without medications... When exhusband walked out April 2009, it was a week till eviction, and a home full of a life together. Devestating to the core, I am humbled now in complete empathic understanding of US, poor disabled persons allowed to disappear onto the streets, morgues... maninly because NO ONE SPEAKS for US! We don't have millions of bucks to throw to congress! BUT You do have SLEEPY AMERICAN, I'm impassioned on FIRE, ready for a CIVIL Rights Revolution using me as your voice, send me your stories, state, etc. We do have millions of voices, and personalized, empathic language and connection CAN change a congress person's heart.
Sleepy American's Electric Lightening Zapped
I fight injustice, inaccurate/ negative stereotypes using my Empizizer which I instantly make a bully or anyone feel what another person experiences to evoke empathy. I was struck by a massive lightening bolt to my left temple which gave me the superpower of Empizization, hence the electrical impulse I transmit to create a memory-like experience for another's real life symptoms and struggles.
Empathy is the key to furthering Disability and human rights! We need people, all people to walk with us in our shoes. Imagine what a wonderful world it could be if we cared about each other, knowing exactly or imagined reality what it is like for a person with various invisible illness and extreme poverty. Connect you with fellow Sleepy American Heroes just like you- instant friends.I cooperate with other healthcare organizations and patient advocates, and with your generous donations, I will represent all of us with invisible disabilities, rare diseases and our unique yet all too familiar struggles as 'Sleeper of the House', and forge a much better future, together.


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