A Post for my PWON’s

PWON stands for People With Out Narcolepsy. Though my subject is still Narcolepsy related, this one for a change, is directed at my nonafflicted friends.

I just want to take this opportunity to thank some of you from Facebook for being so inspiring to me. Here is why:

I am not a fan of cooking. it takes to long, it makes me sleepy, and when its done I am too tired to eat. That is of course, unless I forgot I was doing it altogether, and simply burned it beyond belief. Baking is nice, you mix stuff up, take a nap while it’s in the oven with an alarm set and then you don’t have to eat it till later anyway. But the problem with baking is often it entails a huge amount of carbs of which I try to avoid, because… Carbs make me sleepy.

I have pretty much become accustom to Boost, Ensure, and Clif Bars.  That is actually working pretty well for me, but I do realize I can’t eat that ALL the time so I do try to cook every once in a while, given I am motivated to do so which is hard for me.  Cooking is never just cooking for me. Its preparation, cooking, clean up, eating, loading dishwasher and then unloading dishwasher. Perhaps not a huge deal for some people, but each and every one of these activities is a huge exhausting process for me. Hence, motivation… had better be strong.

Knowing I was probably going to drink my diet for all of eternity, is when I started getting into psuedo competitions (in my own head, not necessarily yours,) where if I saw someone else post food, I immediately wanted to either try it or top it. I don’t think I have successfully topped anyone elses dishes yet, I’m not even sure that is possible with so much creativity, but the fact that I am trying, just for the sake of posting it on Facebook, just like a lot of my friends are doing,  is a really big deal. It means I actually eat real food.

I am not purposely starving myself, and I have not developed some sort of eating disorder, A lot of the problems I have with food, comes down to the fact, I just simply don’t think about it. Narcolepsy is a disorder from the hypothalamus part of the brain. It is the same part of the brain that is involved in several functions of the body including:

  • Autonomic Function Control
  • Endocrine Function Control
  • Homeostasis
  • Motor Function Control
  • Food and Water Intake Regulation
  • Sleep-Wake Cycle Regulation

There is the theory that having a lack of  hypocretin cells, can wreak havoc on a lot of other hypothalamic functions in addition to disrupting the way that we sleep. There is not a lot of real actual studies behind this that I am aware of, but it seems a lot of us notice “other” symptoms that we all seem to have in common.
One of those things is a problem with food intake. So many of us don’t seem to have any sort of appetite gage. So we either eat and eat and eat, waiting to feel full and never do, or forget to eat at all.  I am dealing with the latter.  I literally have alarms set on my phone to remind me to eat. If I don’t do this and skip my Boost or meal or what ever, my blood sugar plummets and I get very, very ill.  Not a lot of fun let me tell ya.

So basically, my dear beloved daywalkers, thank you so much for posting your food online. not only does it inspire me to cook occasionally, it reminds me to actually eat.  I can’t thank you enough. I am trying to do this thing now where I am making a new kind of pancake every week. I hope to get it off the ground, but I don’t always remember. Pancakes are fast and easy and a good way for me to practice. So if you see I havent pancaked up in a while, remind me to eat pancakes!

My 3 favorite Photo Chefs are:

  1. Dawn Marschat Holmes
  2. Mary McEowen
  3. Dan Mullane

Thanks Guys!

Also Thank you to Jessica Stanton from Planet Narcolepsy who gave me a quick run down on how the hypothalamus works. (Cuz that whole thing is seriously complicated!)

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6 thoughts on “A Post for my PWON’s

  1. Dawn says:

    YAYYYYY! That is so Cool Marcia! When I started posting food in the beginning, It was a bit of a tease and an I miss you for Mary and Erica. Then I began to notice others posting their food pics as well. Then it just took off. I am a firm believer that our eyes and our taste buds are BFF’s. If it looks ascetically pleasing, it will be pleasing to the mouth.
    I am so glad that This random thing has actually helped someone for something. More over YOU. Someone I really like. BONUS for all!

  2. Mary says:

    I do think we have a creative writer on our hands!!

  3. Mary says:

    Marcia you make logging in to face book fun. I sit here when my kids are yelling in the back ground and they sound so far away like I hear them but through a tunnel. I read the comments as if they are Sunday comics like a sort of neo-comics and I laugh and laugh!! To me that is what I THANK YOU for your witty funny comments. Also, Dawn Marschat Holmes and Erica Klenk Mancilla who just make me laugh. The best thing in life to live for besides sleep, LOL!

  4. marcianna says:

    Oh and I thought all this time you were addicted to farmville or something! How very awesome your Maryness!

  5. marcianna says:

    Wait is Erica posting food too? I just added her recently, I am gonna have to go through all her old photos! I did not know! Thank you Dawn!

  6. Dawn says:

    Not really, maybe a random thing here or here. It was when they were in Mexico!

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