One woman with Narcolepsy with cataplexy, Fibromyalgia, Rheumatoid Arthritis, Diabetes, Depression, & Neuropathy leads a team of superhero advocates with bravely bringing Invisible Disabilities to light, busting inaccurate stereotypes, Empizizing the masses (her superpower) to inspire empathy and combating ableism everywhere. Unleash your inner superhero!
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!
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....
Chronic, Invisible Illness since the age of 19, Prescriptions Drugs and Routine Care have kept me Semi-Functional, in that I can feel safe when during the following:
1. A sleep attack forces my eyes to close (extremely severe in length per episode, severity of episode and frequency of SLEEP PARALYSIS AND HYPNAGOGIC/ HYPNOMYOPTIC HALLUCINATIONS),
2. I feel emotion a little as extreme sleepiness, empathizing with fictional character, real character, thinking up a witting comment, humor of any degree or kind, anger, surprise, fear, panic, PAIN, etc. (extremely severe CATAPLEXY),
3. Something Stresses Out / Triggers a MAJOR DEPRESSION EVENT (like my current fear of spending hours each day involuntarily quadriplegic~ via the above REM paralysis states above), and when
4. I Battle EXTREME MUSCULAR AND JOINT PAIN driving my cataplexy, sleep paralysis, clinically significant Depression.
My health is significantly impaired when and if I experience a lapse in my Prescription Medications, usually due to bottom barrel funding of Managed Medicaid for Star Plus in Texas, I become a virtual invalid vegetable... I look like I'm dead, but I'm consciously awake on many levels of existence. I can hear, see if eyes open, feel, smell, taste, but it takes me 15-30min to finally break free from Narcolepsy's Powerful REM Paralyzing grip on my brain.
I have taken this regimen for over 1 decade, ten years~ for Narcolepsy: cataplexy, excessive daytime sleepiness:
1. Xyrem- 3 doses nightly of 4g each
2.Effexor xr- 300mg night (2 150mg)
3.Modafonil 2xD 200mg
Superior Health Plan, a managed HMO plan for disabled person's is a Star Plus Medicaid plan, and suddenly I find I cannot get a refill of Provigil nor Effexor, because only one pill each drug is allowed as of September 2016! I am out of Effexor XR 150mg caps completely, and that alone is horrifying for someone with as severe Narcolepsy with hours of sleep paralysis, hypnangogic hallucinations as I. My insurance has always refused to cover my dose of Xyrem,so I am put back on Xyrem's patient RX Assistance each year. Now with my mediations in limbo, terror of impending conscious coma is on countdown, against this Prior-Authorization Monster.
So whom the HECK has the ace in this HealthnotCaringMuch deck? Definitely not the Patient, Nor the Doctors, it's Third Party Health Insurance. Yes, I am on Medicaid, but unlike Medicare, Medicaid is now largely contracted to ....you guessed it... Third Party HMOs whom make profit with TAX Payer funds to deny our (TX) states' most vulnerable, in need, impoverished, legally and medically incapacitated and disabled populations essentially without a crutch to help us stand. Then cut cut cut our lifeline each session every turn, and no specialist wants to accept such a small fee for service. Thank you TX for making a profit for Superior Health Plan by denying me the ability to laugh and not break bones, etc. Soon, my hands will not even be able to type, because I cannot find a neurosurgeon to treat my severe double arm and handed CarpalTunnel Syndrome.
This week has been a terrible Fibro Flare, feels like all over Charlie Horse cramps, recurrent UTI's and Fungal infections I am trying to beat, but it is clear that Sleepy American must triumph or person's with invisible debilitating illnesses will never gain the civil rights we deserve just as much as the elderly. Medicare is so much better than Medicaid... no contracts to third parties... a purely national program, except part D. If I could have worked as a teenager, I would be on SSDI/Medicare, but unfortunately in 2002, I had been in school like my folks wanted, my narcolepsy onset so hard, I was KO for months begging for diagnosis, as my insurance Excluded Sleeping Disorders medically insignificant, despite part of my brain slaughtered by my autoimmunity. Medical SOS: Attacked by the PRIOR-AUTHORIZATION MONSTER
Have you ever been attacked by the Prior-Authoization Monster? How have you managed? Together we can get the greed out of Medicine. Cut the profit from the deniers... The Doctors, the patients, yes they are the only one's deserving a place at the dictating treatment options. Why do we allow business degreed insurance employees determine our most vulnerable's fate? #SleepyAmericanHeroes
The number one take away from living with an invisible chronic disability/illness is undeniably that YOU are your BEST advocate! Only you know your body best. By December 2001, I was experiencing Full Body Collapse from minor emotional arousal: not just at laughter but also selfing with a fictional character. I KNEW I had a major sleep problem, and I got a referral from my then PCP to see a neurologist. The Neurologist, Mom, and I knew I had very severe Narcolepsy with Cataplexy, but you must have a overnight sleep study aka Polysomnography as well as a daytime, 5x nap test called a Multiple Sleep Latency Test (MSLT) which measures whether and how fast you enter REM sleep via your brain waves and if you can recall any dreams. I was relieved we were getting closer to curb my all night sleep paralysis Nightmare on Inception hypnagogic hallucinations.
The next day my Mom called sounding upset. Turns out Mom's health insurance plan I was on EXCLUDED sleeping disorders. They refused to cover any kind of sleep study or treatment. OK, there is cellular Death in my Brain, and that is not MEDICAL Enough for you?
It was time for me to get strong, be brave and spend my Christmas on Elm St. since I wouldn't be getting a diagnosis, let alone treatment for Narcolepsy with Cataplexy. Yes, I am stubborn and refuse to stop feeling emotion and expressing such with a zestful passion for humor and sarcasm, even though I spilled a half-pint of peppermint ice cream on Mom's couch when the squirrel blasted out of Clark Griswold's makeshift Christmas Tree, or looking like a freak at Walmart running while collapsing trying to break my cataplexy collapse on a pile of boxes, my body tensing and twitching consciously fighting the involuntary paralysis. Oh, the Narcoleptic classic Christmas traditions of Cataplelalaxing down the staircase overhearing my Dad's jokes, as well as that moment I took a sporadic mini nap during the exhausting feat of opening Holiday gifts!
Thankfully, My Dad's Health Insurance Plan covered Sleeping Disorders, both diagnostics as well as treatments. The process of cancelling my plan with my Mom, and switching to my Dad's included time to add me, choose a new PCP, see the new PCP, get a referral to Dr. Gregory Foster, a pulmonologist, and finally see Dr. Foster for an appointment.
Given my classic symptomology, he ordered the required diagnostic sleep studies for Narcolepsy; I was going to get my test I longed to get diagnosed. February 2, 2002 was the night I checked into Plano Baylor Hospital's Sleep Lab for a Polysomnography and the MSLT immediately following. The polysomnography went as best can be expected with the 'Medusa' treatment (crazy wires), For the MSLT my instructions were to NOT nap for 2hrs, to stay awake for each 2hr cycle, followed by a nap/attempt to nap.
I ate breakfast, several overnight wires were removed (ahhh). I first started to study for my Psychology exam on a desk in the testing room beside the bed. Having a terribly difficult time fighting the sensation of being awake 3days straight, I then turned to watching music videos on MTV. Still fighting the nod monster, I resorted to attempt studying, watching music videos, while marching in place. The first MSLT nap test came, as I did as instructed: lie in bed, attempt to nap, and if you remember any dreams, describe. The second 2hr. MSLT cycle I was back to my triple threat stay awake plan! Study, March to MTV. I vividly remember Alanis Morisette's Hands Clean playing, I was struggling to jog in place to stay awake, when severe cataplexy washed over my body, my body now collapsing backward as I yelled to the front desk cam microphone in my room, "ELP! I aving atapwexy!" "Thud! as I fell backward, paralyzed , hiting the back of my head onto the nightstand behind me, and subsequently the hard tile beneath." The tech came in looking like a deer in headlings as I explained I had just experienced full collapse cataplexy triggered by fighting extreme sleepiness (aka sleep attack), and he helped me stand back up, get back to my feet for the rest of that 2hr cycle. The fourth nap cycle, it was getting so difficult to NOT constantly trigger this severe cataplexy, I resorted to jog around the sleep lab halls as I started to collapse, I made it barely to a chair in the hall, as everyone stared with a freaked out expression watching my will spasming against the extreme cataplexy paralysis.
Two of the five MSLT nap tests were positive for narcolepsy with cataplexy, me and my family were right, and finally I could get relief! Dr. Foster started me on 1 Provigil 200mg in the AM to fight sleepiness, and Impramimine for suppressing cataplexy, sleep paralysis, and hypnagogic hallucinations. Prescriptions made my life better, but I was still struggling with my extreme narcolepsy symptomology. It was then that Dr. Foster said he no longer felt comfortable treating me, and referred me to Dr. Phillip Becker, his mentor.
Dr. Becker of Sleep Medicine Associates changed me from impramimine to Effexor XR, which really helped my cataplexy. Over the next year we adjusted the Effexor XR and Provigil, when Dr. Becker had me try Xyrem instead of Effexor, and finally I slept with Delta waves for the first time since 9/11. Still having significant cataplexy falls, hypnagogic hallucinations and sleep paralysis, Dr. Becker put me back on EffexorXR. Subsequently, I've been diagnosed with Central Sleep Apnea during REM sleep cycles(brain forgets to breathe occasionally), Fibromyalgia, Rheumatoid Arthritis, and Restless Leg Syndrome. I am now much safer on my current treatments to laugh, fight sleepiness, though I still have cataplexy falls and extended sleep paralysis several times a week. One cataplexy fall, I broke my left foot in three places.
Narcolepsy with Cataplexy has stripped me of the ability to gainfully work, drive, and the horrifying anxiety of needing very expensive orphan medications to function at the level of the average treated person with narcolepsy. Yes, I have fallen asleep in a bed(of rice/beans) in restaurants several occasions. I get exhausted so easily, in a world and American culture which associates the need to sleep and nap with weakness. I have found my passion, my joy, my purpose in becoming a patient advocate for invisible disabilities, Sleepy American. I blog, vlog my stories and knowledge to spread not only awareness but most importantly to inform the not yet diagnosed, comfort the newly diagnosed, and ultimately heavily associate our Narcolepsy with the most scary symptoms the media never fails to exclude and get wrong: cataplexy, sleep paralysis, hypnagogic hallucinations.
Sleep Medicine is way behind in becoming common medical knowledge and practice, and I hope to achieve all these goals via Sleepy American and her Justice League.
