10 replies to this topic

[sleepyavon]

My Heart Glows Today, because I Helped Someone.
By Rachel Russell

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 on Myspace, 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.

[kogeliz]

Beautiful!

[sleepyavon]

Thank You! I wrote it after receiving a phone call from a lady in Detroit who had found my Myspace Page, and called me, because she was pretty sure she had Narcolepsy, but was afraid to seek diagnosis. I told her, her life could only get better by getting diagnosed and starting treatment. Living life sleepy and having cataplexy is no fun life, and treatment can make it so much better. She said she would just fall asleep doing most anything, but then wake 15 min later feeling refreshed. She also described an episode of cataplexy to me, though she didn't use that word... I sure knew what it was. So I hope I could offer her some comfort and understanding, reasuring her that we are not lazy like others like to say, but narcoleptic. It really profoundly touched me, because eventhough we just lost our house and are burried in debt, and have no money, I STILL had something to give. It made my heart glow, smile.

[Cryopathic]

(sniff) (sniff) Incredible.

[kogeliz]

Thank You! I wrote it after receiving a phone call from a lady in Detroit who had found my Myspace Page, and called me, because she was pretty sure she had Narcolepsy, but was afraid to seek diagnosis. I told her, her life could only get better by getting diagnosed and starting treatment. Living life sleepy and having cataplexy is no fun life, and treatment can make it so much better. She said she would just fall asleep doing most anything, but then wake 15 min later feeling refreshed. She also described an episode of cataplexy to me, though she didn't use that word... I sure knew what it was. So I hope I could offer her some comfort and understanding, reasuring her that we are not lazy like others like to say, but narcoleptic. It really profoundly touched me, because eventhough we just lost our house and are burried in debt, and have no money, I STILL had something to give. It made my heart glow, smile.

Awww... that's sweet!

Do you know what ever happened to her? I mean, if she went to the doctor or anything?


and I hope everything works out better for you financially.

[Cryopathic]

Dito.

[Cryopathic]

Heres a poem I wrote about narcolepsy, Well Its not really a poem.



N. Neurological
a. Automatic Behavour
r. R.E.M (Rapid Eye Movement)
c. Cataplexy
o. Our Community Cares
l. Lack of Hypocretin
e. E.D.S (Excessive Daytime Sleepiness)
p. Provigil
s. Sleep Paralysis
y. YOUR NOT ALONE.

[sleepyavon]

Thats very good cry! I tried to call her back to see how she was doing and get her address so I could mail her some NN pamphlets and the book Narcolepsy a Funny Disorder that's No Laughing matter, but I go no answer, just ring after ring. But the one I did talk with her she seemed very sure that going to seek diagnosis and treatment were best, and so did her husband/boyfriend... I didn't even get her name, just the caller ID info.

Thanks so much for the well wishes, I sure hope we can make ends meet better real soon, too. Thanks so much, Hugs abound, Rachel

[Toph4er]

Well, if we're gonna be throwing out our poems:

Wishful Dreaming

A sentence, a snore.
The cadence, a bore.
When sleeping does wake
Can meaning retake
The absence of thought
For that sense he sought?
In good chance he might
This nuisance will fight
And let go fin'ly
Of narcolepsy.
But just then a fright.
Another bad night.

[Cryopathic]

W...O...W...Did you make this?

[Toph4er]

Yes, for my English class , the first (and probably last) real poem I've ever written.