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Many things have happened since being in the city of Council, Idaho, last year on my Summer 2010 bicycle trip and the current moment.

Some of which includes looking for more support structures for myself regarding my increasing symptom severity of narcolepsy and also being outside the box of the diagnosis.

Since getting back to Sacramento, California in September of 2010, I sought more face-to-face groups for people with narcolepsy. Not finding any, I turned to online groups finding, surprisingly to me, many on facebook. For privacy some are 'Closed' and more are 'Secret' and hidden. Given that these are the stories of self-selected persons on the internet, I nonetheless hear many similarities and differences to my experiences. And why should they not be real, since I am real, on facebook, and have a blog.

I also did other in real world stuff, but just keeping with the narcolepsy related stuff here, I found many of the 'problems' that in the past I had struggled with, which I had been and had been attributed to other causes, were more directly explained as corelated symptoms of narcolepsy. I heard many in the facebook groups talking about and sharing experiences that were very similar to mine, including finding my day-to-day experiences dreamlike cause my waking and dreaming world were having a fuzzy boundary (hypnagogia and hypnopompic state) and I often found myself doing things I had intended to not be doing (automatic behaviors) all related to prolonged sleep deprivation due to chronic lack of restorative sleep.

I am writing this post today cause one of the persons I met at the Narcolepsy Network Conference 2011 that I went to at the Stratosphere Hotel (an architectural landmark that I had been wanting to go to since here) is Julie Flygare and she writes today here: "The F Word" http://remrunner.blogspot.com/2011/12/f-word.html and linked to here: "The Pause-and-Nod" http://remrunner.blogspot.com/2010/12/pause-and-nod.html about her evolved tactics in explaining what narcolepsy is, in casual conversation. I appreciated hearing her experiences and ideas. In the past, if I chose to share my 'diagnosis' with others, I often found I struggled with the response received from others, namely that many (way more than I would have thought, giving the people I interact with) responded with humor, ill timed humor, and sometimes relating. Then the conversation would shift to another topic, and I would be sad but glad to see that moment pass.

No more I say !

"SAY IT LOUD: I'm a Person with Narcolepsy and I'm Proud!"

I am writing about my 'epic' summer bicycle trip cause I want to have many faces to this disorder. I do not want narcolepsy to be about staying home and safe but about living a multifaceed experience. I want my child to have resources to turn to for information and knowledge about narcolepsy that I did not have, such that they are a benefit. For this I go public with how narcolepsy has altered and shaped my life.

There are days that I cannot get out of bed. There are behaviors that I do that I find emotionally triggering (to myself and that others have found challenging). The 'better healthcare' I found in the Fall of 2010, responded back to me today saying that I "fell through the cracks" when I have called them repeatedly about better options to my worsening symptoms that are certainly harshing my reality, as they were on my summer bicycle trip. That is part of my life currently.

Then there is this too:

CouchSurfing event

The view down

The view up

Gum Moon event and a Video of the event (seems like a dead link but here is the youtube video of the event http://www.youtube.com/watch?v=izxfMN7pk3o and a youtube video of the history: http://www.youtube.com/watch?v=rWRt2a8QTEw )

on a Metarotiscapes tarot card

Outside the Nevada Test Site

Outside Creech Air Force Base to ground the drones (from here: veggievoyagers.blogspot.com)

The view down

Caretaking Sekhmet (and dogs) at Temple of Sekhmet

Thanks offered to Julie Flygare, Alexandra, and Chris for the links. Gratitude to Kelley as well as Shanna for "N. R. G. (Narcolepsy Resource Group)", and Jessica for "PWN". And thank you, dear reader, for reading this LiveJournal.

And the SkyJump off the Stratosphere Tower was fun !


( 2 comments — Leave a comment )
Dec. 7th, 2011 04:32 pm (UTC)
Am reelinf Gratitude towards Ming and his health! Yay for sleep - wishing more peacefulness to come!!!!

Dec. 9th, 2011 03:29 am (UTC)
Your declaration
It's important that you lead the way forward on this confusing and little understood diagnostic cauldron. I've thought of you often since returning home, wondering if you were feeling rested, having the symptoms you described, getting worse... Did you ever read One Hundred Years of Solitude by Marquez? Even though magical realism is a confusing phantasm the part about the insomnia just jumped into my head to scare me. I hope you will keep searching (calmly) for symptomatic relief from the elements of narcolepsy that are negative to your health.
I send Love and Support and a Strong Wish for your Well-Being. Chris (still posting on www.veggievoyagers.blogspot.com)
( 2 comments — Leave a comment )

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