Doubters, Judgers, and Unsolicited Advisors: Civil Coping Approaches to set the Record Straight about your Chronic Illness

Sleepy American's Empizer... Strikes Back! 

13 Perfect Christmas Gifts for Chronic Illness Warriors

Happy HoliDAZE! Such a busy, happy, fast-paced time of year, when well person's often get exhausted from the todo's and festivities. For Me, Christmas is wonderful, joyous, but also a messy, difficult, anxiety-triggering, sleep-paralysis nightmare come true. I have severe Narcolepsy with Cataplexy, Sleep Paralysis, Hypnagogic Hallucinations, Fibromyalgia, Rheumatoid Arthritis, Depression and Anxiety, as well as Restless Legs Syndrome. Therefore, I am always in significant muscular pain, and often blindsided with a feeling of not sleeping for a whole week, often consciously paralyzed for an extended time during the week.

Most of our loved ones and the general public have no real understanding just how difficult and utterly exhausting simple life tasks are , as well as the spoon debt which skyrockets proportionately to holiday parties, decorating, seeing and chatting with people whom assume I'm not looking sick enough. I do love this time of year, this is the Christmas my Savannah is so excited about! The lights, the trees, the toys!~ She wears me out!

If I could get presents from Santa for being a good patient superhero advocate, I really want these awesome chronic-illness friendly Christmas/ anytime Gifts!

1.Nap Cave: a room exclusively dedicated to slumber/recharging our 'batteries' Complete with blankets, couches, hammocks, cots, sleeping bags, daybed, bed, air mattresses, etc. As well as blackout blinds, white noise player, eye masks, etc.

Sleepy American's Nap Cave

2. Daily Full Body Sports 2 hr. Massage session to lessen the severity of muscular rigidity, pain, cramps, tears,etc. My Fibromyalgia pain leaves me helplessly drowning in intense charlie horses in my legs, glutes, back, shoulders, neck, etc.

3. Comfortable and Fun sleepwear, PJ's, as most of us with invisible disabilities live ready for bed,I mean kick butt... at the drop of a hat! This Nightshirt is Sleepy American's favorite to fight negative mindsets and misconceptions regarding invisible disabilities....

4.  Inconspicuous hidden Private napping place. Options include a sleeping bag- stuffed bear disguise and  a nap pod~ The Tranquillity Pod

5. Top of the line electric pulse(pro tens units) massager with many replacement adhesive pads.

6. More and better sleep: restful, uninterrupted, with NO Sleep-paralysis nor Hypnagogic Hallucinations. A full week of 8hrs continuous normal sleep wake cycles. Now in Phase 3 Clinical Trials is concentrated Xyrem, a drug which currently makes patients take 2 or 3 doses a night. By Putting Sodium Oxybate in Micro Pump Form, Avadel Pharmaceuticals is getting me closer to a good normal nights sleep.

7. Jacuzzi or Spa to ease tight muscles and relieve pain.

8. Fulfillment and Self-actualization as Sleeper of the House, Sleepy American to become widely known as a champion expert patient advocate and activist for Invisible Disabilities and Rare Disease. Narcolepsy and Fibromyalgia took away so much so early in life, I never got the chance to fulfill my dreams of becoming a Psychologist.

9. A self-driving vehicle which runs on clean energy, solar, and operates using GPS. No more cabin-fever, bumming rides from dear ones, better self-esteem and productivity as a citizen. Independence, dignity regained. Safer roads, happier lives. Transportation to get things done and introspect on my life, pain, and missions, as I have not been able to drive since 2003.

10. To write a book about my incredible life journey: from starving without medications to Superhero, Sleepy American/Sleepy American Heroes! The energy,quite time and finances to make writing my story in it's entirety in one book a reality.

11. The ability to expertly draw and illustrate effortlessly. I can write, I can create music, I only wish I could drawn beautifully.

12. Brand new custom designed and made Sleepy American costume wardrobe for each day, occasion as I see fit. Some PJs, easy lounge wear. a few formal, business casual, etc

13. The Real Life ability to Empizize, using my superpower to transfer real memories and experiences with mere touch.  For our family and friends, strangers often have never ending supplies of unsolicited 'expert' advice, panacea
magic cures not based in medical findings and research, the Empizer instantly corrects their way of thinking making them experience your or another's real life symptoms, life experience, etc.

         Sleepy American EnLightengs Judgementals, Unsolicited Misguided Advice

15 Amazing People With Real Superpowers

From You Tube Description:

The world of comics and movies is full of superheroes and characters with abilities that transcend what is possible for the typical person. We enjoy these stories because we can escape our reality and imagine what it would be like to have amazing powers of our own. Yet, a gifted few in this world don’t have to imagine because like the superheroes in comics and movies, they too have extraordinary powers beyond normal humans.

Here we will look at a selection of real world people with remarkable powers and abilities that surpass those of us mere mortals.

Author: Brent Swancer

**************************************************************************

List

10. Bajau Laut: Last Of The Sea Nomads - Aqua Humans/ Aquaman

09. Slavisa Pajkic - The Electric Man / The Battery Man

08. Kim Peek -The Real Rain Man / Mega Savant / The Walking Google

07. Masutatsu Oyama - The Godhand

06. Isao Machii - The Jedi in the Matrix /Superhuman reflexes / The Modern Samurai

05. Dean Karnazes - Ultramarathonman / The Human who can run forever / super endurance man / The Real Flash

04. Daniel Browning Smith - The Rubberboy / World's Most Flexible Man Alive

03. Wim Hof - The Iceman / The Real-life Iceman

02. Veronica Seider - Smallest visible object | Guinness World Records / The Woman with Incredible Vision

01. Michel Lotito - Mr Eats All-Even Metal

5 more real Superheroes!  From youtube comics, From Description

Some superpowers go beyond the comic books and movies.

Executive Order a Cot in Our Quarters

"Instead of Invading Iraq, we should've taken a Nap.  Tempers flare, when sleep is bare. Executive order a cot in our quarters, even for Congress, there's a Nap for that." ~Sleepy American

Why I am so happy the House passed the 21st Centuries Act #CuresNow, I just might collapse from cataplexy! If we work together, we really can put our nit-picky idiosyncrasies aside for the greater good of humanity. Yes, I have narcolepsy, and MUST talk several daily naps and lots of hardcore prescriptions to comfortably exist, but Naps make EVERYONE healthier, more productive, happier, more compliant, cooperative, and less stressed. Speaker Paul Ryan even has a cot in his Congressional Office, so he can sleep, nap when going home isn't feasible. Thanks House of Representatives!

Yes, the rumors are true, I have been appointed by President-Elect Trump as Sleeper of the House. The government will only pay $600 for me to go to Capitol Hill during Rare Disease Week, 2017

#RareDC2017 @rarepov @RareAdvocates Thanks House of Reps #CuresNow I accept @realDonaldTrump 's nomination as #SleeperOfTheHouse #narcolepsy

"Keep, ancient lands, your storied pomp!" cries she

With silent lips. "Give me your tired, your poor,

Your huddled masses yearning to breathe free,

The wretched refuse of your teeming shore.

Send these, the homeless, tempest-tossed to me,

I lift my lamp beside the golden door!"

Faith Bigger than Fear is Vital to Surviving Chronic Invisible Disabilities

Let your Faith be Bigger than your Fear.  Nothing is too big nor impossible for  Our Lord.~ Sleepy American

I (SleepyAmerican) have a lot of experience in being a Narcolepsy and Fibromyalgia Healthcare advocate. My Narcolepsy is severe case of all the Auxiliary symptoms, as well as multiple health conditions, & some of the darkest most 😖 MySpace PWN groups we started and 2 YouTube Awareness/real sleep paralysis vids were my contributions to awareness circa 2006-7.  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.

Experiences anyone could have experienced. I lost my ex-husband as he abandoned me in 2009 with absolutely nothing A week from eviction. While with him I had no health insurance yet in my sleep doctor was kind enough to help me with pain patient assistance programs which I had to apply for each one and I take more than just Narcolepsy meds I was trying to get 10 of them before I could get disability. I had to go without gabapentin for my fibromyalgia which left me in horrible pain most the time we went hungry we lost our house to foreclosure, filed for bankruptcy a lot of it was medical. It's the lowest point I had ever gone in terms of emotionally. It really was a cataplexy tornado.

My parents saved me from homelessness. A friend of mine taught me how to file for a free low-cost divorce because I cannot wait to get my last name back. In August 2010 I am most died from a cantaloupe sized Hepatic Adenoma on my liver. I very nearly almost didn't see the age of 30. In 2011 I got a scholarship to my second narcolepsy network conference in Las Vegas which I clearly subtitled my Divorce-moon.

These past seven years I've rebuilt my life. I have a much happier life, though finances and formulary RX changes lately have been a bump in the road. They mess with the Effexor XR generic and 💥 I'm on my backside in extended sleep paralysis. I am a mom of a two-year-old in my take care of her full-time. I went through the pregnancy wondering if/how I could have so many health problems. It amazes me that my broken body could create this perfect little girl intact with all the hypocretin neurons she needs.


My family has been very supportive of the Narcolepsy since I onset severely September 2001. Of the worst things I have experience with Narcolepsy it would be insurance coverage, drug coverage. I knew there was something going on with this sleep thing when I saw cataplexy I knew that that's what I had and my grandma put it altogether and said I think she has narcolepsy. So right away I go in and like Dr. this is what's happening I need a sleep study OK here you go here's the sleep study. oh no roadblock: My mother's health insurance that I was on completely excluded sleeping disorders that means no diagnosis no treatment. I didn't get my sleep studies until February 2002 and of course it was the narcolepsy.

 I would love to hear how you know what it's like to be at your lowest but still come out on top in the end. My Faith in The Lord carried me at my lowest parts of my life, and at times I could have given up hope, as logic and the world say so. Nope, I held on tight to God... that I would find a great man, more stability, and a family (Savannah Diane 's been my daughters name for 15yrs). Thank you, Jesus, for your blessings and angels lighten our load, sadness, pain, and amplify our joys, victories, and smiles. Thank you to all my online and in person family and friends for being by my side in the times of triumph and troubles. Amen.  ~Sleepy American

Sleeper of the House: Rare Disease Legislative Advocates Week Feb 26-March 3rd 2007

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!

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.

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.

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.

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.

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.

Act now to secure the right of people with disabilities to live in the community!

Act now to secure the right of people with disabilities to live in the community!


Write three letters for freedom!

"Your help/contribution means the difference of providing a better life for so many with invisible disabilities seeking better treatments and/or cures vs being ignored, forgotten. "~ Sleepy American

Tell your legislators to act now to protect our rights to Life, Liberty, and the Pursuit of Happiness! The Disability Integration Act (DIA) establishes that disabled people have an equal right under the Constitution to live in freedom! It does this by guaranteeing that our community has the choice to access community based supports and services.

DIA is supported by members of both major parties and introduced by Representative Gibson (R-NY) and Senator Schumer(D-NY), but we need your help to promote this important bill.

Before they head home for Thanksgiving, your legislators should sign on to support our constitutional right to live in the community! Click the link and send a message to your elected representatives asking them to cosponsor DIA!

FREE OUR PEOPLE!

"Sleep paralysis with hypnagogic hallucinations from behind my eyes.." Sleepy American

Sleepy American's Letter:

I am asking you to help! I am one person with disabilities,and this could save lots of money, state and federal institutional moneys. However, SSI , housing for us, utilities, transportation, and often clothes and food are NOT adequate to live on. $733 is hardly anything you would imagine living on, right? Plus the privatized contracted TX Medicaid is a nightmare when trying to find specialists willing to take the constantly cut Superior, Molina, etc private for profit ... supposed to help TX most vulnerable, but failing us miserably. Lots of generics also no longer on the formulary for US Scripts, TX Vendors.... If you want to support this bill, you must take better care of US, America's Forgotten.
DIA enables people with disabilities to live at home in their own communities!

DIA has the potential to save the Federal and State governments millions of dollars by allowing us to live in freedom rather than be forced into expensive institutions!

DIA ends forced institutionalization which interferes with our Constitutional right to liberty!

Sleepy American Heroes S01E02:Cindy Vs. The Huffle Puffle

Something weird is going on with 3rd grader Cindy... she is always in a sleep haze even when she gets a full nights 'sleep'. Everyone things the Huffle Puffle is a bad dream, but Cindy knows this monster is Real and torments her every night in her bed... she cannot fight, she is unable to move. Then suddenly the buzzz of paralysis lifts and poof the Huffle Puffle disappears. When she laughs or gets frightened at recess, her knees and body give out, face droops, and her friends worry and try to hold her up. Where is Sleepy American to solve this scary mystery for Little Cindy and all whom love her?

No Authority

Unless you experience bone breaking Cataplexy,

Unless you have Hypnagogic Hallucinations couple with Sleep Paralysis....

Whenever you close your eyes...

So Afraid to sleep, so afraid you are Dead, So afraid you are in Hell...

You have no Authority concerning MY Narcolepsy with Cataplexy.

~Sleepy American

NarcoCon 2016- Assemble Sleepy American Heroes

Only the Biggest Slumber Party of the year!  Join Our Invisible Justice League because you are a true Superhero. Sleepy American fights negative stereotypes using my Empizizer which I instantly make a bully or anyone feel what any person experiences. It's my honor to Assemble my Sleepy American Justice League!  Join my team! http://www.SleepyAmerican.com  https://youtu.be/N67pwnbF0IY #Nnconference2016

Our SMALLLEST Justistice League HEROES are Our BRAVEST

"Sick isn't weak" an awesome AD shows the strength of our smallest Sleepy American Heroes- INTERNATIONAL LEAGUE, SICK KIDS, CANADA  #Cancer #cysticfibrosis #autism #kidneyfailure

Costco Saved my Life!

Chronic Illness, expensive in every sense of the word: Financially, Socially, Emotionally, Devastatingly so. Narcolepsy with Cataplexy, Fibromyalgia, RA, Diabetes, Restless Legs Syndrome, Chronic Hepatic Adenomas, High Blood Pressure, Postpartum Anxiety and Panic Disorder, Depression, double profoundly severe Carpal Tunnel Syndrome both fingers to elbows... I am a burden to my family, the state, but a cash cow to the Health Care Industry and Big Pharma.  At least I feel that way often.

Recently, my health insurer, Superior Health Plan's Formulary, run by US Scripts has restricted my Generic Effexor XR to only Half of what I need , In Addition, Superior Health Plan via NIA Magellan has extremely difficult access to procedures including imaging and minor to major surgeries even with say many liver tumors. The past month I have been stuck... stuck in pain, cannot find a neurosurgeon to operate on my wrists with profoundly severe carpal tunnel syndrome, stuck in several hours of Sleep Paralysis with Inception on Elm St. realistic Nightmares for 1-2hrs. at a time.

Sleep Paralysis with Inception on Elm St. realistic Nightmares

Exclusions;means there is noway the insurance company will cover said benefit, as in no more Modafinil come March 2017 this will become my reality. I have a heart condition which prevents me from taking other stimulants, as in Ritalin nor Adderal. Nothing else is left but Provigil and its Generic, Nuvigil and its Generic. Nuvigil is newer than Provigil, excluded as well.

Modafinil 200mg tab

Most pharmacies up price their generic drugs just under the brand name versions, way over what they wholesale paid for said generics, meaning big profit made off of those suffering. One and only one pharmacy seems to provide the vast public with very significantly cheaper generic prescriptions. A true life saver for myself when I take care of my daughter, nearly 2, and without my exact dosage of type and timing, I become seemingly conscious inside a dead looking, comatose body, in a seemingly never-ending cycle of sleep paralysis, Narcolepsy's scary symptoms also include cataplexy when emotions or sleepiness are felt,and I get paralyzed, often times for hours even having extrememly realistic experiences of being waterboarded or bombed burned alive while on Inception Living on nightmare on Elm St. Gerneric Welbutrin has helped me some, but half the day I still have variations and bleed thrus lasting hours a day, making me feel sick, leaving my depression and postpartum Anxiety sheer torture.

Venlafaxine ER 150mg Cap

Costco, I am so thankful you pay your employees well, and give them days off, like Thanksgiving! In addition, you still make a profit,  but have a social consciousness above the rest of US retail. From $259.00 a month at Walgreen's for 60 150mg Generic Effexor XR , Costco charged $25.39. When my insurance stops covering 60 Modafinil 200mg, I will pay $64.90 vs $1800.00 at Walgreen's. You don't even need to join Costco to buy prescriptions, they are friendly, nice and take their time to transfer your medications, as well,. I feel like I am getting back to myself, that I can shut my eyes without fearing death or danger, that I can laugh and not bust my knees as hard or break a foot.

No one sponsored this post, I just wanted to share my and my fellow persons with Narcolepsy's experiences with a club Warehouse with a heart of gold.   I have found Costco  Pharmacies often even BEAT GoodRx's prices! Sometimes Good RX finds better prices, so you can see if you can save more either way.  In addition you can always try to get your Prescription Drugs and clinic visits at no to little cost via the Partnership for RX Assistance (PPA) . Below are the links accordingly:

Stay Well Thank you for cheering my Team of Sleepy American Heroes as we battle not only damaging stereotypes but also fight for fair, affordable and quality health care for invisible disabilities, as we are often incapacitated even before reaching adulthood thru no personal fault of our own. I am here to support you

 Yours truly, Sleepy American

Rising like a Bosssssssss

 I am an Invisible Disability Advocate, from Zero to Hero, like a phoenix from the ashes in the face of extreme adversity.

Narcolepsy is Expensive in every way: financially, socially, emotionally,self-esteem, relationships, independence, judged unjustly, health, etc

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Evolution of Dance: Cataplexy Edition

Evolution of Dance: Cataplexy Edition

From the Head bobble  to the knee Jerk Je Jerks to Break my foot Dancing, Sleepy American takes you on an exclusive tour of the evolution of Dance, Cataplexy Edition.  What my Knees Jerk Je Jerk and you know You're funny!

Night in Nuclear Winter

I'm not sleeping after being bombed to death an hour ago. I felt being blown like a projectile through the air, there was no escape within a 5mile radius. oh the incinerating pain of fire burning my flesh as the explosion vaporized each cell of my body- in SLLLLoWW Mode. I said the longest goodbye to my family right before we knew our fate. Terrorists.... classic SleepyAmerican Sleep Paralysis with Hypnagogic Hallucinations. #narcolepsy Every night without Effexor xr, Xyrem and daytime Provigil my dreams are THIS Real... like me touching you real! Almost all night every night. Really Superior Health Plan and US scripts? WTF to Save a Friggen Buck!!!! Formularies suck. So it's Suicide Prevention Awareness Week and it is this week you STOP covering Antidepressants?Classy....