Friday, July 22, 2016

Stepping with the Wind



Stepping with the Wind
By Rachel Dawn Nesmith (SleepyAmerican)


Like a breeze on a sunny day,

One enjoys its refreshment.

For time opens doors to do what we may.

Now comes the time when one must transfer the tent.


Never to forget the paths behind,

Or the many kind thoughts I can feel,

Though, it is not quite like what I had previously defined.

For my mind, the right way it will reveal.


Step in time, where the wind blows,

As its guidance is definite.

The promise of the future follows,

And, as for the past, one can never relent.








Thursday, July 21, 2016

Go Ahead, Knock Me Down, Push Me in the Mud....

A lot of people know how I, Sleepy American live in a beat up Pinto of a body with Narcolepsy with Cataplexy, Fibromyalgia, and RA, but few know all of the non-Medical/Social/Life obstacles I have overcome in life. ANY one of them would crumble many. 1986 Many Days each week, I was sexually assaulted by two classmates.  I hadn't known about sex, but I did know I didn't like being held down underneath the understructures of our playground when I just wanted to play with my friends. It was difficult for me to explain, and I was afraid of saying what was really happening to me if/when after they ever caught up to me because I was afraid to mention sexual vocabulary, esp. to elders. The chasing, knocking me down, molesting/raping went on until I had enough. I finally opened up to my closest friend in my class(and she agreed to keep running with me and not to. I told the teacher I duty about the boys chasing me, but was told to not run and then they couldn't chase me...? ! I am not naming names- not my place) Frustrated, me and by friend kept running that day in may 1986, desperately trying to stay right in front of the teacher, not caring much if we did get in trouble  for running when she said no, because stopping where she could not see was a much worse 'punishment'.



We ran around the entire playground, and looking for a way to get back up right in front of  the on duty Teacher at Recess, Stoping dead in front of her, looking into her disapproving eyes as my little rapist pushed me into the puddle of mud directly in front of me. I got scolded, in addition to covered in mud symbolically smearing with shame. My friend graciously helped me clean up as best I could in the school bathroom. I vividly remember looking at my reflection in the mirror at the sinks and I saw a STRONG and Fed UP young lady thinking about how messed up this all was! I was angry, exhausted, and for crying out loud just wanted to play at recess. Finally, I explained best I could to my parents, still afraid to say sexual words, because coming home covered in mud-stained skin/clothes made them upset, as it was. The last several weeks, the sexual and physical attacked decreased, quickly stopped thereafter. I was so happy to be a kid again, a really natyremSavu 6yr old, sensible adult in a child's body. c Though less severe in nature, I was sexually assaulted 3 more times in my Elementary, Intermediate,and  high school.

How did I deal? Make sense of it? make it right? I started by writing poetry, standing up for children' and women's human rights.Intermediate school, I became president of Y-Teens, a teen group of the YWCA, and I loved being involved.

How can we as parents ensure our children's safety when out of our sight assumed to be safe under a trusted watchful eye? How much do you tell our 6yr olds about sexual assault by anyone happens....?




A Disillusioned Childhood 

Dedicated to all those who have suffered Sexual abuse.

I have walked many paths,
Seen many sights,
Yet still not to fight the wrath;
To fix all wrong and make it right.

I once was a child,
Ran around Free and wild.
And in an instant, all was stolen,
As into an abyss, I had fallen.

"Time heals all wounds,
 As one would say.
Still, all inside seemed ruined.
I guess I'll wait another Day.


 ~Rachel Dawn Nesmith
   Sleepy American


Monday, July 18, 2016

Let's Hold the Time Warp PWNs?



I love Xyrem and how it has allowed me to not be in semi constant rem paralysis, safe to feel emotion and sleepiness without breaking my foot as often, and am so thankful for Xyrem and the SDS pharmacy, but is it just me or is it tough to be on hold anytime, and esp. for Xyrem's Pharmacist?





YOU MIGHT BE A NARCOLEPTIC......


Hi, this is a very humorous list I got off of the old myspace Narcolepsy group.  If you know me or anyone with Narcolepsy, prepare to laugh.

YOU MIGHT BE A NARCOLEPTIC......

- If you've never finished anything you started - not even a sentence.
- If the phrase "rest home" sounds like heaven.
- If "let me slip into something more comfortable" generally means sweats.
- If the lights go out in your office every 5 mins ever since the
management had motion detector sensors installed.
- If your mood rarely matches that of your environment.
- If you praise yourself every time you remember something before it
is too late.
- If the people at your church think you're very spiritual because you
spend so much time with your head bowed.
- If you change your pajamas twice a day because you get so much use
out of them.
- if the last place your husband looks for his clean clothes is in the
closet or the dresser drawers.
- if you say "now what was I saying?" over 10 times a day.
- if you get up to go to the bathroom and halfway there forget where
you were going.
- if you can fall asleep on a roller coaster.
- if you need naps more than your toddler does. (yes I do)
- if you have to constantly ask someone "did this actually happen or
was I dreaming?"
- if you are absolutely positive you paid that bill, you remember it
vividly, you can even tell what check .. and everything only to
discover that the check is still in the book and there is nothing on it.
- if you can eat dinner and five minutes later have no idea what you
just ate or if you ever did.
- if your Brita pitcher has only had a half an inch of water in it for
three days becuase you just don't have the energy to 'make' water.
- If, in elementary school, your SAT scores started saying "post high
school" in the 3rd grade, yet you were still being tested for special ed.
- If the justice system has ordered you never to appear as a witness
for the rest of your life (all those false 911 calls - "Yes! You've
got to help me! There's a tall caucasian man in my room with a knife
and a rubber ducky! He's...oh nevermind. He vanished.").
- If "Huh? I'm sorry, what did you say?" is part of your regular
vocabulary, and you're not hearing impaired.
- If you've ever said "I'm so exhausted, I need a nap" and your spouse
replies "you've only been up for 5 minutes". . .or if the statement "I
have so much to do right now I'd better go to sleep." makes perfect sense.
- If you've ever been so tired that you can't sleep.
- If your TV only has commercials.
- If the first place you check for missing items is the fridge
- If 2 + 2 = 22 makes sense to you.
- If you remember 100% of what you studied in the textbook and forgot
to go to class to take the final exam (you could swear you had class
on Thusday, not Wednesday).
- If one of your regular weekend chores is searching your house for
randomly misplaced items.
- If you answer the phone with "I um yeah um hello? Did I call you or
did you call me?"
- If your side of a conversation consists mostly of "And then...wait,
I think I was...what was I gonna say?"
- If, when you see a spider on your wall, you envy his ability to keep
moving, but realize he is probably really a figment of your imagination.
- If you have a clock on every wall in your house and all of them are
purposely set ahead to different times so you'll always think "It's
time to go!"
- If you have a 10 hour or more delay on memory retrieval.
- If you have memorized or carry in your wallet a list of "Why I'm
Late for Work" excuses for 250 days of the year plus one for leap year.
- If you have to put lunch on your "to do" list.
- If you've trained your dog to turn on the coffee maker, pull the
covers off you in the morning when your alarm goes off, and prod you
into the shower.
- If you have more than 3 sticky notes on your bathroom mirror daily
and one of them says "Don't forget to read your sticky notes".
- If you've forgotten your own birthday.
- If you feel like you're trapped inside an invisible time machine
that thrusts you forward in time in random 2 hr spurts.
- If "NIGHT is to DAY as SLEEP is to ____" sounds like an unsolvable
riddle.
- If you function better when you are under the influence of amphetamines.
- If you can fake people out that you're bilingual by reciting the
names of your medications.
- If you can remember to call your doctor, but you can't remember why.
- If Santa Claus hits your house around noon on Christmas because
that's when you're most likely to be unconcious.

My Heart Glows Today, because I Empathize

I wrote this a decade ago, just found it in my old discarded myspace archives.
 Find Comfort My Friend, from a Fellow PWN (Sister Spoonie)

Today my heart glows because I could help.
Dark in the night of our lives we walk alone,
But together, when we reach out for help,
An angel is there, someone who understands.

Tears of joy stream down my face, because she called.
When faced with chronic illness, we are terrified.
So many questions, so few who understand.
Does anyone out there Know what I am going through?

A smile glows in my heart today, because I could help.
Like a diamond, I feel the warm joy of feeling worthwhile.
The reason, the purpose of posting my story Online, Fulfilled.
Today is the day I can comfort and reassure a friend I have yet to meet.

When not knowing what’s going on with our body, the fear, the worry;
To find an understanding shoulder is not easy to find.
Others think you’re lazy, though the exhaustion attacks us...
Against our will, the cloak of sleepiness overwhelms....
We are trapped if we do not reach for answers.

My heart glows today, because Someone reached out for help.
Narcolepsy is no picnic, and without each other, terrifying.
No one knows you like another with Narcolepsy.
No one else can tell the jokes only we can laugh about.

Thank you, dear friend, for reaching out today.
I know I don’t have money, but understanding I am rich in.
I hope I could help you, and that you know...
Thank you for making my heart glow with joy.
Thank you for calling me,
 For Giving me the privilege of being there for you. I wro



Wednesday, July 13, 2016

Pomegranate~The Iconic Cataplexic Escapade

**(as performed at the Narcolepsy Network's 2006 Dallas Convention) 

It was 2002 when my family grieved the loss of my Great Uncle Vernon to Pancreatic Cancer. Vernon was my Paternal Grandma's big brother. After his funeral and burial, my Mom,Dad, Sister, Brother-in-Law, and I joined my Grandparents Nesmith at their home to reflect on the good times, memories we were blessed with Uncle Vernon.  

I hadn't had very much sleep, and as a person with narcolepsy such can affect the severity of our symptoms. My family and I always have a great time visiting and talking to each other, and like them, I have a very active creative sense of humor at the core of my being and personality. My Sister, my Dad, and my Brother-in-Law are hilarious and make you laugh so heartily, quickly it can get dangerous for myself via cataplexy. One tiny re-quote from funny films, memories often floored me into cataplexy for many moments at a time. I had created a funny comeback to our playful debate, but  couldn't voice but a pathetic peep, TAZED by Narcolepsy's Cataplexy triggered by finding my own comebacks hilarious. 

My Dad didn't believe that cataplexy leaves me conscious or lucid for several to many aspects of sleep. Like millions of others uneducated that cataplexy as a common symptom of Narcolepsy, Dad Dearest was incorrect.... tons. Of course when I became a soft formless paralyzed form of muscular and connective tissue mush, Dad assumed I was experiencing a traditional sleep attack, he thought it impossible for me to behalf awake and able to willfully move. 

My Grandma Vivian began saying "Oh my gosh Rachel passed out!"
Mom- "Don't make her laugh!" Omg how many times do I have to tell you."
Dad- "I didn't do it!" "It's part of the narcolepsy she passes out when she laughs. Catasomthing?" 
Sister- "Mom you make it worse over panicking -Rachel hears everything and finds it funny." 
Grandma- "So she passes out asleep while laughing?"
Dad- "I think so. Rachel says she is aware during this state, I don't know..." 

Then Dad Said, "Rachel, if you can really hear us, the secret word is Pomegranate."🍅

The speculations and panic ensues for 20 more minutes until this Cataplexy attack released me from its chains. I stood up slowly, smiling and laughing in my head, holding onto Mom, took 3 steps towards Dad  .... 

Me- "Dad, the secret word is Fworbidwen Frwuit" (slurring my speech as I instantly recollapsed in Cataplexy). No one questions me now-- be careful - in cataplexy and sleep paralysis I can hear everything you say! 

 

Tuesday, July 12, 2016

#SleepySays Original Memes






"Trapped in the web of Sleep Paralysis, I become Tazed with Fear.  My Nightmares become real, as the Monsters come Celebrate.~ SleepyAmerican #disabilitypride 

"To Suffer in Silence, pretending to smile thru the pain makes us Super Heroes." ~ SleepyAmerican  'Spoonie Advocate of the Invisible Illness Justice League'

"Please insert all unsolicited, nonsensical, and/or illogical fairytale advice below(pic toilet) Thank you, the Management."~SleepyAmerican


"Oh, I remember when I used to just get Tired/Sleepy, Now I Live Here."~ SleepyAmerican




"My blankey is my cape! My medications are my Spinach.  The Summer Heat is my Kryptonite." ~SleepyAmerican

Wednesday, July 6, 2016

How Your Feet Help You Sleep!

How Your Feet Help You Sleep! Why do we sleep best with one foot kicked outside the covers? the bottoms of our feet are hairless, and as a result are an easy route in which heat can escape.