When Butterfly sleeps and Rainbows collide

Next weekend March 11-13, 2016, #ProjectSleep challenges you and your loved ones to SLEEP IN for 12-48 hours to raise awareness of sleep health and sleep disorders during #NationalSleepAwarenessWeek. Register –> http://www.crowdrise.com/sleepin2016

CALLING ALL SLEEP-LOVING HUMANS & PETS: Sleep is a misunderstood and often-overlooked pillar of health. Sleepiness is not laziness. Whether you are a sleepy teen, person with a sleep disorder, supporter, sleep professional or sleep enthusiast, your SLEEP IN matters. Let’s make PEACE with SLEEP,

Julie Flygare, J.D. Founder & President, Project Sleep

It was a mental refresher to spend my first morning of 2016 unexpectedly in a beautiful island which I never had the luxury of doing for a year. The change of air and environment cleared the shadows and set the record anew. Nagsasa Cove filled me with awe and reverence. Vibrant green mountains seem so alive, unpolluted blue waters on fine shores I felt on my toes. Watching the first sunset horizon was a blaze picturesque of a greater year ahead, unearthing the midnight starry sky so close you could just pluck the tiny diamonds in an arm’s reach.

Celebrated NewYear’s Eve at MOA Seaside with Jules and Angeline over beers, crispy pata, and fireworks. Fetched by Zhang and Jes, drove to Pundaquit in San Antonio, Zambales from 2 AM to almost 6 AM and another 1 hour boat ride to Nagsasa Cove. Special mention by the way to their nice, friendly and very clean community. No signal, no plugs, common bathroom, cook/grill your food or let them, bring/rent tent, lights out at night, set a bonfire or use candles/emergency lights, simple and homey feel just the right tranquil I need! 2016, I’m loving you!!!

Posted in my IG last December 29, 2015. My IG is not sync with my Tumblr, but wanted to share this before the clock strikes 12:00. Time check 12/31/2015 8:13 PM.

For the most part of my 20′s I don’t know what I truly want. There was no direction. I’m no stupid nor inadequate, and I know I have ambitions. I have experienced the greatness of life in almost all aspects too. I’m blessed with many great and loving people around me. During my brokenness, I resented Narcolepsy for straying me from my career path. However, I can’t think of what path would that be, perhaps walking up the corporate ladder. Ironically, what I have really wanted when I was a child was to be pediatrician, and since my degree is not pre-med, I was aiming to be a sped teacher or a clinical psychologist. Though not one had been inked in my resume, I believe that there are so many things I have learned about losing and being lost, which I might never have valued if I were successful. 

It was only when I was 27 when I realized what path to take. It was also the significant time I had fully known Jesus Christ. I was born and bred as a Catholic and have always been a believer of Almighty God our Creator, but I never had completely understood why there was a Son of Man. My parents’ unwavering faith showed me the way.  I started reading diligently the bible page by page but I was just disappointed by the wickedness of man. My friend Joycee introduced me to the Book of Job, and my Mom also told me to concentrate on the New Testament because it is about salvation. Indeed, Jesus saved me. He is the King who laid His life to redeem us from sin, death and evil. Back in 2011, my friend Maribot also sponsored me to this weekend retreat where an immense transformation took place. I had been struck so much by God’s abiding love. Plus I had made good friends not only with my fellow participants but with the whole community.  It was also the beginning of knowing my true source of happiness.

Fast forward to now, I’ve been stuck. Over the years living with Narcolepsy and even until now, yet minimally I hope, that I had these worst inhibitions which can be so apprehensive and sometimes violent that shooed people away. A relationship break-up or black sheep tantrums at home or an end of long friendship. My inhibitions also developed from missed opportunities, bitterness and shattered confidence as I aged. I sometimes get tears when high school friends nonchalantly recalled how I was a bright and free-spirited girl,or when memories about ace drinking and upbeat college life are juxtaposed at me. Maybe I miss my skyrocketing zest for life, but I passed that stage and as a grown woman, I choose investments. I seem to know a lot of things, but I seldom or never put it into action. I had been so hard on myself. All rooted from my negativity, which is a devil’s working. Down and helpless, I talk to Jesus for the renewal of my faith. He forgives and saves me every time.

Jesus whispered to me. “I died for you. Will you live for Me?”

Julie Flygare is the very first person I’ve known to have Narcolepsy.  I read about Narcolepsy for years and mostly centered on scientific or medical data like from wikipedia, newsletters or school journals.  I never have encountered real stories from real people. I’ve surfed some support groups as well as researches employing PWN’s in the US, yet no first-person narration or name/face identification was absorbed in the mind.  Until I directly disclosed about my sleeping illness in the social media this year. I never hide it before though, there is a dedicated effort to make people listen. I met Julie via Twitter that brought me to her blog and Project Sleep, then simultaneously met other PWN’s too. She is now my mentor and friend. 

An elaborate study about Narcolepsy.  Very informative.  I’ve added some newly gained knowledge from the article.  Credits to NY Times.

higher risk of obesity

memory, thinking and attention may be affected

2/3 of PWN’s have cataplexy

early common misdiagnosis are ADHD or depression

cause of N can be genetic

microsleep episodes actually happen

PWN’s are possibly autoimmune due to HLA’s (antigens) overproduction

Epworth Sleepiness Scale, a simple test to determine EDS potential

daytime sleepiness meds and cataplexy meds with its side effects

I can personally vouched how doctors can be timid on diving into the deeper darker unknown ocean of Narcolepsy. I was diagnosed 4 years after I started having the symptoms, and I still followed through with my research. My persistence stemmed from the stagnant thought to fend for myself with the maddening desire for an answer as I live through each day with invisible illness.

In my case, on that 4th year I was already equipped with labels in my mind for these repeating malfunctions or abnormalities, and aligned it with the closest description from the articles. I had enough already of short-handed answers, maybe’s, and in-betweens, so I made sure I had references. My two neurologists had to review their books as I established my symptoms and my sufferings. The first one contented my theories with a prescription to take PSG and MLST, however these tests are not available at the hospital where she is based. Only 5-star hospitals with sleep laboratories can perform the tests and are very costly.

After months, I went to one of the recommended sleep labs and the staff won’t entertain without a consultation from their resident specialist. The sleep specialist was actually the game changer then. She believed me from the get go. That was because her medical sales representative had witnessed my cataplexy attack. The med sales rep was seated next to me on queue. I came right from graveyard shift then and while waiting, it happened. She jumped out of her seat when my head dropped halfway on her lap.  I couldn’t see her face ‘cause my neck was dunked in but I could just imagine how shocked and flustered she was. She gushed, stood up and she threw my head away that slammed back on the wooden furniture. That incident happened just few minutes before she entered the sleep specialist’s clinic. 

When I stepped in, the sleep doctor looked enthused, and all the time we were talking she had been so awed and attentive. It was the only time that I have ever felt someone actually knows all these things I was talking about. She told me that I had just experienced a cataplexy attack outside her clinic and talked about the tests that I must take because most possibly I have Narcolepsy. She told me also that she only had 1 patient diagnosed with N and he is just a boy. thus she find my case very rare and interesting. Unfortunately that was the first and last time I had talked to her. She was not affiliated with my healthcare provider so I cannot use my benefit from ex-company for the sleep tests or even just consultations with her. I never saw her again since, and met instead my longest reigning neurologist in the same hospital.

He was the 2nd neurologist/3rd doctor who believed that I have Narcolepsy and he took a different approach. He was older and he was so sure about it that he lectured about not needing to undergo the tests ‘cause in the earlier days there are also no laboratory assessments, and it is impractical and should not limit patients who can’t afford to still be diagnosed and treated.  I got his point and was really thankful he prescribed me the meds. Only one thing I don’t always understand and that is the prescription. My year 1-3 doctors also did good in 'not explaining' which projects how their time is truly gold, which is. So my busy doc is always wrapping up when I’m just starting to probe. He will just tell me to lose weight and to exercise regularly. He even made me this 10-minute physical routine everyday. I was curious with the meds and what each does, because I also had meds from my OB then and some diet supplements, though assured me it won't complicate things.  I searched it myself and discovered that his prescribed Tofranil is just an anti-depressant. No mention of the fact that it's chronic and incurable. Then, I realized it was because he never really talk about Narcolepsy. He would just give tips me on getting a good night sleep like turning cellphone off to avoid the beep sound and the need to check it distraction, or always about losing weight, eating healthy, doing things that makes me happy, worrying less, and so on. I never heard him say cataplexy or narcolepsy or sleep paralysis and all that sort and he thought I was just a little kid. I like how he was like a father to me, but I felt my condition remained unrecognized or invalidated even if I was already with a doctor.

Forget what you’ve seen in the movies. Narcolepsy symptoms aren’t as obvious as you might imagine. Here, the under-the-radar signs of this mysterious sleep problem.…

Never heard of Narcolepsy before? This article is a friendly-read about the ABC’s of Narcolepsy.  It is to impart a handy overview of what Narcolepsy really is and its place in our society.

Narcolepsy Network’s 30th annual conference

October 9-11, 2015

Hyatt Regency Hotel

Minneapolis, Minnesota 

I am already following Narcolepsy Network on Twitter but I haven’t chance to do my homework yet. So I did today. Also after the March 13 2015 panel discussion of Snooze TV which if only I had known they have live stream this Friday, I would have watched and asked questions.  Apparently, their topic was about Narcolepsy and Narcolepsy advocacy.  

Learned that Narcolepsy Network is the oldest and the largest organization (estimated 500 members all over the world) for Narcolepsy. They are the pioneer of Suddenly Sleepy Saturday, and have been encouraging U.S. cities and states to declare Suddenly Sleepy Saturday as awareness about Narcolepsy. The latest city to recognized Suddenly Sleepy Saturday with a proclamation was Tucson, Arizona as posted March 11 on their Twitter.

During sleep week, they had a bed race last March 8 in Virginia.

Link to Snooze TV Episode 3: All about Narcolepsy and Narcolepsy advocacy.

https://www.youtube.com/watch?v=JdZoXv1DRdU&feature=youtu.be

NN’s website: