#worldnarcolepsyday Batman cataplexy chronic pain custom tee shirts diabetes dream fibromyalgia hepatic adenoma high risk nap napcave naptastic narcolepsy narcolepsy awareness national napping day patient story pregnancy relax Rem Rheumitoid Arthirtis sleep sleep paralysis sleep week sleepy sleepy american Sloth spoonie superheroes true story World Narcolepsy Day xyremRachel Nesmith
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. 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. Sleepy American and her Justice League.