The Answer To Life, The Universe, And Everything

“How Many Roads Must a Man Walk Down?”

Fascinating question. No, really. The lack of my usual sarcasm even startles me. Odd right? But the simplicity of it makes you think: What if… I never knew?

Never knew what was “wrong” all those years as a child? Never understood why I couldn’t quite keep up with the rest of the world with out several naps? Never discovered that I had Narcolepsy? Where would I be? What would I be doing? Would everything be different? The same? Better? Worse? Who was I? Who Am I? Who will I become?

After five years of pushing the idea of not allowing a diagnosis to become who you are, as a patient advocate, I feel I have inadvertently ignored my own advice. Not maliciously, mind you, but I simply do not have the energy to be everything to everyone and still be true to myself and live my own life. As much as I love being able to help others who are just starting down the nightmare road of sleep disorders, there just isn’t enough time between naps.

It’s never good to live in the past too long. And because of being diagnosed with Narcolepsy, and going through the ups and downs of acceptance,  it didn’t seem so daunting anymore. The questions I have had all my life are answered, and I can finally put my past away and move on with my life. It can be whatever I want it to be… as soon as I stop standing at the corner of Narcolepsy Blvd and Cataplexy Lane, and move forward.

I dont know where “forward” will take me. I kind of like that. I’m just going to put down everything, pick up my towel… and go.

This is my last entry. I will leave the blog up, just because someone someday might want to read it. And excuse the lack of humbleness, but some of these entries are incredibly clever. LOL. Even if I am only amusing myself! I want to thank all my friends, and readers for following and supporting me. And Congratulate miander42 on being the winner of my contest. Great minds and all that right? Please Email me at Marcia.was.here@gmail.com so I can get your information!

Well that is all I guess. Sweet Dreams My Friends.

So Long, and Thanks for All the Fish.”

 

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National Sleep Awareness Week Contest

So No one responded to my last contest. I knew it was a little hard but I was really hoping to see some interesting stories develop from there. Anyway…. Meanwhile, I have a prize to give away!

Ok so lets make this new contest super easy because I have an important announcement later this week when I reveal the winners.

I am thinking of a number between 1 and 100. In the comments below, (below, as in on this page, not on Facebook,) please tell me what number you think it is AND why I chose that number. Its easier than you may think! The first person to answer correctly wins!

There will only be one prize, a hand made book bag by yours truly, consisting of a dream journal, a copy of “Aberrations” by Penelop Przekop and an autographed copy of “Wide Awake and Dreaming” by Julie Flygare. I will verify the winner in my next blog post! Good luck everyone!

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Sweet! We have a winner!

I have closed comments, and will post more on this tomorrow, but for now, I am off to bed. I have a sleep doc appointment in the morning!

Savannah

Finally got moved!  Goodness I have been busy, like seriously insanely busy. And I completely welcome that!
The cats are all settled in and doing well, my plants not so much though. Going to have to give them away to someone with some sunlight I guess. I just have way to much tree cover where I am at.  I am a little disappointed by that.

Everytime I uproot and move like that, my whole grasp on everything can get seriously joggled. Falling from routine can be so easy, but so hard to re-establish again. Its been pretty frustrating. I get annoyed sometimes how far I push myself, especially since I know the consequences. I’m looking forward to getting everything back to normal again.  The things I can do in this city are infinate and I am hoping to get on that track soon.

Well soon as I can find my way around a bit better. Lol.

NO means NO… (Probably Not. Maybe. Ok.) WAIT… NO.

I been able to do a lot of things I really like doing lately. I learned how to do wire work with my sister and helped her with her wedding, I spent time with my boyfriend just chilling out and vegging in front of the TV. (Seriously, not something I do… like ever.) even took a boat out to the channel entrance and sat under the stars one night and playing tag with a dolphin. I have been doing a lot of sewing and writing and went to see a play with some friends, and many other things, that I have put off for way to long.

I have just been so happy and having such a great time, that I had to wonder, why don’t I do these things anymore? Why am I always so tired and stressed out? Be cause I’m an idiot. That is why. I push my self way to hard, way to far and have so for way to long. It was easy at first. I was filling  void. Still am. Trying to prove myself to people who will never pay enough attention to anything I do to notice anyway. Trying to prove that even though I can’t work I’m not completely worthless. I realize this now. something I should bring up with my therapist I guess.

Being happy came as a complete surprise. I haven’t been in a long long time. I was content with that version of “normalcy” though so its never been an issue… till now. I am really lucky to have such great friends and wonderful people surrounding me at this point in my life. And I know like all things this moment cant last forever and I dont want to miss out on this place in time because I was to busy trying to save the world/myself, all the while waiting for the other shoe to drop… Because something bad always happens….

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I need to start learning the meaning of no, and really exercising that.

 

What No means to me:

“I have looked at my calender and decided I just cant do it right now.”
“If there is someone else that can do this, then that is a good idea. I dont have to do it all.”

What No doesn’t mean to me:
“I would do this, but I just dont care.”
” I would do this, If someone else asked, but I dont like or trust you so… NO.”

I really need to find my balance. I had it for a while, but the scales are tipping favorably in new directions for me and it is time to really decide what the next few years will mean for me. I am pretty excited about that. And I hope desperately to not screw it up with scheduling conflicts! I want to spend many more nights looking at the stars and just, “Be Happy.”

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Marie Claire Opens Our Eyes to Narcolepsy

 

In the Health section of Marie Claire’s October 2011 edition, Sophia Banay Moura tells a story most of my blog readers can identify with greatly. Especially one reader in particular, Julie Flygare, because the story the author is portraying, is hers.

On pages 274 and 277 of the latest issue, Julie’s story is told marking how she came to realize her disorder, and the struggles she had during that time. It’s incredibly heartfelt , something I completely identified with and I highly recommend reading it as soon as you are able. This story may chronicle the evolution of her awareness about herself, but in my opinion the real “awareness” story does not end there.

 Since Julie’s diagnosis in 2007 she has vastly contributed to awareness of the public sort by speaking to scientific researchers,  Harvard medical students, and the general public.  She also speaks to narcolespy communities about advocacy. ( Including  the up coming Narcolepsy Network Annual Conference in Las Vegas, Nevada.  Note to self: Do Not Miss! ) An avid runner, Julie started a blog about running with narcolepsy in 2009 called REM Runner which since has become hugely popular and widely recommended by the PWN community. In April of the following year she raised $6,000 for narcolepsy research while participating in the Boston Marathon with Wake Up Narcolepsy and is training again to run next year. Also an incredible photographer she has a website of her work and a blog called District of Sculpture about monuments great and small in the DC area. Having just turned 28, Julie is writing a medical memoir about life with narcolepsy.

Wow that all sounds so incredibly plagiarized. Haha. Oh well, I tried. Moving on, let me tell ya what I really think…

Ms. Moura from Marie Claire could not have picked a better person to write about. Julie Flygare is kind of a Narcolepsy Rock Star, (An incredibly humble one at that!) and some one we should all pay attention to and look to when things seem impossible.  From reading her blog, I can tell you that she tends to not let little things like impossibilities get in her way. Her positive attitude and genuine writings about who she is and how she deals with her disorder, and well, everything else, will take her further than she could ever hope to run. She is easily one of the more inspirational people I have met on my own advocacy journey.

There are days, when I just wake up and think.. “Nope. DO NOT WANT.” and roll over and go try to back sleep. But in the back of my mind, I know somewhere a few states to the north of me, Julie has already gotten up and did everything I need to do three times over that day, and probably did it in heels while juggling chainsaws. haha! I realize how obnoxious that is but I never really think to clearly in the morning.  I don’t think any of us do.

The legends in our own minds, the goals of our lives, the person we all strive to be, is out there.  Julie has chased that dream much like the rest of us and seems to be successfully gaining on it.  ( I imagine it’s because she runs very fast. ) And if Julie can do this, then so can I and you, and you too, and that guy over there also.  You just have to want it bad enough. You just have to go for it. Mahatma Gandhi said: “Be the change you want to see in the world.” Julie is bravely carving that path, all we have to do is follow her example.

The very best part of this whole story on the story is this: I am not sure if Julie or the editors of Marie Claire are aware of this or not, but this issue came out right smack dab in the middle of National Invisable Chronic Illness Awareness Week. It could not have been better timing for Julie to share her story. because right now so  many people are paying attention! Since it was not mentioned, I suspect it was not planned, but I hope it will turn out to be an added bonus for both the magazine and especially for Julie. She has really earned this.

Want to be in the Julie Fan Club? As far as I know there isn’t one. And I find fan clubs creepy, so if there was I wouldn’t tell you. But never fear, you can follow her on her blog and on Twitter using the following links:

Julie Flygare

REM Runner Blog

@RemRunner on Twitter

 Contact and other information.

Congrats Julie!

We are all so happy for you!

 

The Very Scary Thing in my Closet

So last week, I noticed a wicked nasty smell in my closet. Took me all day to clear everything out and I just couldn’t figure out what it was. It was seriously like some horrid chemical death in there. Then I noticed that I had a gallon jug of distilled water spring a leak. Hmmm…. Okay. Water shouldn’t smell though…. right?

WRONG

It’s not actually the water that smells but the water-soaked into the carpet and reconstituted GOD KNOWS WHAT and it smells freaking horrible.

So I decided in all my brilliance, to use my carpet cleaner and clean the closet carpet all together. (Stupid, Stupid, Stupid!) Thus basically, adding LOTS more water to the carpet.

As I waited for the carpet to dry after this, I noticed the smell getting worse. I look and I see that there is now some sort of Crystalish residue on the surface of the carpet in some areas. It totally wreaks too.

Eventually the next day I call my maintenance guy and he stops by and can’t smell anything at all. He suggested I try cleaning it a couple more times maybe just use water not any sort of cleaner fluids. Okay. I do that three more times and still the same results. and more crystally thingys.

Day after that, I have my friend Tim stop in and he does not smell anything either. I am beginning to think I am crazy by now…

So I keep cleaning and cleaning and it just gets worse and worse, I have no idea what it is, but I have noticed my cats wont go in my room anymore. So it can’t be just me right?

Finally, last night after I had taken my Meds, I was just falling asleep when the smell became so overwhelming that I had to stumble (on Xyrem mind you) to the bathroom because I started vomiting so badly. I managed to get there, but I ended up passing out on the floor in my hall way trying to struggle to get back to my bed. I never made it. Which is bad because I am supposed to be on my Bi-Pap machine when I am taking those meds.

Today it occurs to me that whatever is in my carpet may now be in the air. I have been ill and dizzy and laden with headaches all day. So I am not going to take my Meds tonight, or use  my Bi Pap because it may need cleaned out professionally or something. I don’t know.

I am terrified I moved into an old Methlab.

I’m calling my landlord on Monday. There is nothing left I can do.

Update:
Carpet was torn out and replaced as was the flooring beneath it. No idea what it was but it is gone now! Thank goodness cuz that was horrible!

Hi from Georgia!

So the move to Georgia was successful. Sort of.

I killed one of my cats in the process, so that sucked royally. (Seriously cannot talk about that. ) I miscalculated finances for daily living, also sucks royally. And the school situation is not as I thought and I will have to move again closer to Savannah next year. Or pick a new school. ALSO SUCKS ROYALLY.

But other than that. It’s all good. I guess.

I basically screwed my self out of a whole year of getting things done, so I am taking this time do the things I always wanted to do and never could get around to it. Now I have all this time on my hands!  I have been working on getting things ready for a new project idea involving art therapy, and I am working on trying to finish three book I started writing a long time ago. Along with all this I am still volunteering for NN. They like to keep me busy, which is good. I need that.

Sorry it has taken so long for me to post anything new, I have been trying to wrap my head around my new situation and make the best of it. I seem to have a pretty decent handle on things now. I just have to get myself moved and all will be well! In the meantime, this will do fine. Its pretty here. And there are alot of things I have never seen or experienced that are turning out to be incredibly inspiring.