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	<title>Manic Ramblings of Marcianna</title>
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		<title>Kryptonite for Narcolepsy: How it Works</title>
		<link>https://manicramblings.wordpress.com/2012/01/23/kryptonite-for-narcolepsy-how-it-works/</link>
		<comments>https://manicramblings.wordpress.com/2012/01/23/kryptonite-for-narcolepsy-how-it-works/#comments</comments>
		<pubDate>Tue, 24 Jan 2012 03:21:08 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[Automatic Behavior]]></category>
		<category><![CDATA[Cataplexy]]></category>
		<category><![CDATA[comics]]></category>
		<category><![CDATA[decent argument]]></category>
		<category><![CDATA[emotionless]]></category>
		<category><![CDATA[emotions]]></category>
		<category><![CDATA[exhilaration]]></category>
		<category><![CDATA[friends]]></category>
		<category><![CDATA[good person]]></category>
		<category><![CDATA[kryptonite]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[Narcolepsy Network]]></category>
		<category><![CDATA[Planet Narcolepsy]]></category>
		<category><![CDATA[Sleep Disorders]]></category>
		<category><![CDATA[Superman]]></category>
		<category><![CDATA[symptoms of narcolepsy]]></category>
		<category><![CDATA[unphased]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=596</guid>
		<description><![CDATA[I recently received a message from a good friend of mine with Narcolepsy who has been going through a particularly hard time. She asked me to remind her that she is a strong and good person. And of course I will do that, but it really got me thinking about just how *strong* Narcoleptics are. [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=596&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p style="text-align:left;">I recently received a message from a good friend of mine with Narcolepsy who has been going through a particularly hard time. She asked me to remind her that she is a strong and good person. And of course I will do that, but it really got me thinking about just how *strong* Narcoleptics are. How much of our strength is a direct result of the constant uphill battle with our disorder. Our very strength is derived from our debilitating weakness. Our only other option is to become severely restricted emotionally, and I have seen that. For a while, I have even done that. And that is no way to live. Even Superman, after repeated exposure developed a tolerance to Kryptonite.</p>
<h1 style="text-align:center;">
<p><span style="text-decoration:underline;color:#008000;"><strong>Emotions Are Our Kryptonite</strong></span></h1>
<p><span style="color:#000000;">So many of our symptoms are triggered by the onset of emotion, not just cataplexy. I cant have a decent argument, even if I am winning, without needing to go lay down immediately afterward. (IF I even make it to a bed that is.) It is completely exhausting to even *FEEL* anymore.  Oh and of course if I get pushed to the point of cataplexy, which more often than not, I do, then its all over&#8230; I am defeated, pushed to the ground by the weight of my own desire to be and act human when it is clear Android would have been a more appropriate choice&#8230; Emotionless and unphased by the human condition.</span> Able to stand strong in the face of all exhilaration, all anger,  all fear, surprise, laughter&#8230; even love. The list goes on&#8230; I cannot stand it.</p>
<p style="text-align:center;">Literally. I CAN NOT STAND. It wont let me.</p>
<div id="attachment_597" class="wp-caption aligncenter" style="width: 248px"><a href="http://manicramblings.files.wordpress.com/2012/01/kryptonite-betrayal-2.jpg"><img class="size-full wp-image-597" title="Kryptonite" src="http://manicramblings.files.wordpress.com/2012/01/kryptonite-betrayal-2.jpg?w=470" alt=""   /></a><p class="wp-caption-text">Seriously, Lex... So not funny.</p></div>
<p>Kryptonite comes in many colors and can effect you in many ways. Some forms or colors of K and their subsequent effects are very much like symptoms of Narcolepsy making it easy to identify with.</p>
<p style="padding-left:30px;">The Green K&#8217;s ability to bring Superman down to his knees in an unavoidable and often painful collapse.  Much like exaustion.</p>
<p style="padding-left:30px;">Red K pretty much does the same thing but is usually only temporary, similar to cataplexy. Red K also has the effect of paralysis, and hallucination, which definitely will ring a bell!</p>
<p style="padding-left:30px;">Black K can split a person into two different personalities, (bipolar much?!)</p>
<p style="padding-left:30px;">And Silver K will cause paranoid delusions, hallucinations and hyperactivity. And which one of us hasn&#8217;t dealt with that at least once?</p>
<p>Happily not all the Kryptonite out there can be said to coincide with Narcolepsy, (Seriously like we really need to kill off plant life or become radioactive on top of all the other crap too right?) but enough of it does to really make you think. Dealing with so many diffrent kinds of kryptonite or emotions in our case coming at us on a daily basis, Its really amazing any of us are able to function at all. We are our own heroes everyday fighting this battle.</p>
<div id="attachment_599" class="wp-caption aligncenter" style="width: 310px"><a href="http://manicramblings.files.wordpress.com/2012/01/kryptonite.jpg"><img class="size-full wp-image-599" title="Kryptonite" src="http://manicramblings.files.wordpress.com/2012/01/kryptonite.jpg?w=470" alt=""   /></a><p class="wp-caption-text">Symptoms of Narcolepsy: Never a boring moment.</p></div>
<p>All fun fascinating facts about Kryptonite, but lets just stick to the basic original Green K for the sake of argument. (And my dwindling energy to get this posted&#8230;) Even Superman eventually because of the constant bombardment of his enemies using Kryptonite against him, had to enlist Batman to help him out. So regardless  of how super you are, <em>how strong, or how good,</em> it is always going to be ok to ask your friends to help you fight your battles. Whether you are saving the world, or saving your sanity, it is much easier to do with people by your side who understand. We are our own heroes. We all know what it feels like to be the only Kryptonian on the planet&#8230;</p>
</p>
<h1 style="text-align:center;"><span style="text-decoration:underline;"><strong>Yo<span style="color:#000000;text-decoration:underline;">u <span style="text-decoration:underline;">ARE</span> a <span style="text-decoration:underline;">STRONG</span></span> and GOOD person.</strong></span></h1>
</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
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			<media:title type="html">marcianna</media:title>
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			<media:title type="html">Kryptonite</media:title>
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			<media:title type="html">Kryptonite</media:title>
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		<item>
		<title>Busy Busy Blogger Bee (Version 11.12.22)</title>
		<link>https://manicramblings.wordpress.com/2012/01/15/busy-busy-blogger-bee-version-11-12-22/</link>
		<comments>https://manicramblings.wordpress.com/2012/01/15/busy-busy-blogger-bee-version-11-12-22/#comments</comments>
		<pubDate>Mon, 16 Jan 2012 01:22:34 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Busy Busy Blogger Bee]]></category>
		<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[Quotes From Others]]></category>
		<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Art]]></category>
		<category><![CDATA[Blogs]]></category>
		<category><![CDATA[Cats]]></category>
		<category><![CDATA[drunk kitchen]]></category>
		<category><![CDATA[fotoweek]]></category>
		<category><![CDATA[life coach]]></category>
		<category><![CDATA[Martin Luther King]]></category>
		<category><![CDATA[Memorial]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[organization]]></category>
		<category><![CDATA[Pets]]></category>
		<category><![CDATA[small spaces]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=589</guid>
		<description><![CDATA[Yeah, so, sorry this is late! Was busy with holidays and recovering from holidays and recovering from recovering and so on and so forth&#8230;. Anyhow, I have been reading some REALLY good stuff. Things have been very up and down for me lately, and I have found incredibly inspiring work this season to keep things [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=589&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Yeah, so, sorry this is late! Was busy with holidays and recovering from holidays and recovering from recovering and so on and so forth&#8230;. Anyhow, I have been reading some REALLY good stuff. Things have been very up and down for me lately, and I have found incredibly inspiring work this season to keep things afloat. I may not have had much to say the last few months, but I assure you I have been paying very close attention&#8230;.</p>
<p>So here are my top five blog post from the Fall of 2011! I hope you find them as interesting and inspirational as I have.</p>
<h2><a href="http://myrivendell.wordpress.com/2011/10/23/and-the-universe-conspires/" target="_blank"><strong>1. And the Universe Conspires…</strong></a></h2>
<p>Bonnie Copland is a life coach with a really great blog that I discovered in early October. Its almost as if the stars aligned for me to find her when I did because this blog post ( &#8230;and the <a href="http://releasingmetoday.com/2011/10/21/its-not-the-end-tw/" target="_blank">blog post of her friend Deeone,</a> as mentioned in her blog post) Truly resonated with me at that time coming just after the 25th Annual Narcolepsy Network Conference.  I could understand more clearly through these articles that I was putting off my own metamorphosis by constantly dealing with the challenges and changes of others. I have let my own life fall to the cracks in favor of helping others, and am still to this day trying to repair that damage and needless neglect. Since finding Ms. Copeland, I have found many of the things she has written or posted on her video blogs useful, but this is the post that changed me and has pointed me in a direction with greater balance and new focus. I particularly love that their is a chain of inspiration here. Beginning with letters from his late mother, Deeone Higgs, to Bonnie Copeland, and now myself. I imagine this has spider webbed dramatically to others as well, and I hope that my readers will also be inspired by their words.</p>
<h2><a href="http://www.youtube.com/results?search_query=drunk+kitchen&amp;oq=drunk+kitchen&amp;aq=f&amp;aqi=g4&amp;aql=&amp;gs_sm=s&amp;gs_upl=5484l5945l0l7037l2l2l0l0l0l0l337l552l2-1.1l2l0" target="_blank"><strong>2. Hannah Harto : My Drunk Kitchen</strong></a></h2>
<p>Hello!<br />
Here is something new! I am adding a YouTube Video Series to my  Top Five Blog List! Technically Not a Blog or a Vlog, &#8220;My Drunk Kitchen&#8221; Has provided me with soooo many hours of *pee your pants* entertainment, it would be blasphemy to not include it. I literally buy a bottle of wine in anticipation of her next video. It just seems like the right thing to do. Never fear, She always tries to end with an important message and I am glad that she does&#8230; because sometimes the best world perspectives come from drunk people. ( At least, that is what I tell myself when I&#8217;m completely crocked.)  With such important advice like <em>&#8221; Just be confidant about everything and people will think your good at things.</em>&#8221; and <em>&#8220;Really people are just looking for ways to transport cheese into their mouth. All the food that involves cheese is just an excuse to eat cheese. Thats life. You know how thats like life? Because we think we are going after something, but really we are just hiding from ourselves the thing we actually want. And that is to just bite into the cheese.&#8221;</em>  (<a href="http://www.youtube.com/watch?v=ZExt3lxE8_M&amp;feature=related" target="_blank">episode 12: Pizza</a>) As with most people under the influence, she&#8217;s got a mouth on her, so if you are easily offended by that, you might skip this one&#8230;  Though I really hope you wont!</p>
<h2><a href="http://stridesagainstnarcolepsy.com/2011/12/19/candies-for-a-cause/" target="_blank"><strong>3. Candies for a Cause A Sweet Way to Raise Awareness</strong></a></h2>
<p>This Blog by fellow recently Diagnosed PWN, Really struck me. So many people when they are first diagnosed with Narcolepsy go through the whole grief process, but this woman, just seems to have trucked right through it and I am sooo proud of her for that. I was thrilled to see her feature a guest who handed out candy for awareness. It was really a good idea and I hope that concept catches on with more of us in the Christmas&#8217;s to follow! I certainly hope to do it myself next year!</p>
<h2><a href="http://districtofsculpture.wordpress.com/2011/10/11/district-of-sculpture-photographer-julie-flygare-wins-first-place-in-fotoweek-dcs-international-awards-competition-2011/" target="_blank"><strong>4. District of Sculpture Photographer Julie Flygare Wins First Place in Foto Week DC&#8217;s Internarional Awards Compititon 2011</strong></a></h2>
<p>Julie Won an AWARD!!! I am so extremely proud of her! Julies photograph, “MLK’s Spirit Walking,” Was given First Place in the 2011 <a href="http://www.fotoweekdc.org/" target="_blank">FotoWeek DC</a>‘s International Awards Competition for the “Mobile Phone Spirit of DC” category.  She took a series of photos shortly after the new MLK Memorial went up, all of which were astounding, and I am so very pleased that she was honored in this respect. Many of us know Julie from her own Narcolepsy blog: <a href="http://remrunner.blogspot.com/" target="_blank">http://remrunner.blogspot.com</a>. District of Sculpture is another blog project of hers that I truly appreciate. Too often I am unable to get out and admire and muse about the things around us. The sculptures and stories that Julie shares with us here are just one more way I can leave my own boring reality and walk into another&#8230;. and more often than not, learn something at the same time. If you are like me and cant get enough of Julie, check out her photography site also! <a href="http://www.julieflygarephotography.com/" target="_blank">http://www.julieflygarephotography.com</a>.</p>
<p>( Bravo to Julie for making this list twice!)</p>
<h2><a href="http://districtofsculpture.wordpress.com/2011/10/11/district-of-sculpture-photographer-julie-flygare-wins-first-place-in-fotoweek-dcs-international-awards-competition-2011/" target="_blank"><strong>5. </strong></a><a href="http://smallspaceliving.blogspot.com/2008/03/small-space-pets-climber.html" target="_blank"><strong>Small Spaces Pets: The Climber </strong></a></h2>
<p>This is my new favorite blog for this quarter! And its old! No activity since January of 2009, I am lucky to find it at all! I was searching for new ways to entertain Musashi, Miyako, and Kohaku, when I found this blog post. And it is BRILLIANT. (I want one of these Pet Climbers sooo bad!)  After reading this I literally spent hours coming through the other post here, and I am still not done! I truly hope what ever is keeping this Incognito Pittsburgh Couple from continuing with this will subside, and there will be much more to come from them soon!</p>
<p>So As a heads up my next quarterly Blogger Bee post is due days before my sisters wedding, so please be patient with me as it will undoubtedly be late also. Already since Christmas, I have found things that just might make the cut! Im excited to share them with you!</p>
<p>For those of you who find blogs and posting links to them to Twitter or Facebook, I do read those! keep doing it! I have a vast array of interest and am always interested in seeing what is new out there&#8230; So show us what your reading too!<br />
<strong></strong></p>
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		<title>Never Enough Time</title>
		<link>https://manicramblings.wordpress.com/2011/11/16/never-enough-time/</link>
		<comments>https://manicramblings.wordpress.com/2011/11/16/never-enough-time/#comments</comments>
		<pubDate>Wed, 16 Nov 2011 13:48:16 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[busy]]></category>
		<category><![CDATA[friends]]></category>
		<category><![CDATA[Gibbs]]></category>
		<category><![CDATA[life]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[Narcolepsy Network]]></category>
		<category><![CDATA[Sleep Disorders]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=586</guid>
		<description><![CDATA[Usually, after  Narcolepsy Network Conference I am ready set go for the next project on my list. And there are many of them. Having Narcolepsy though means having to decide where and when you put your energy on a daily basis. There is so much that I do, and there are so many thing I [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=586&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Usually, after  Narcolepsy Network Conference I am ready set go for the next project on my list. And there are many of them. Having Narcolepsy though means having to decide where and when you put your energy on a daily basis. There is so much that I do, and there are so many thing I am responsible for right now, (my sleepy version of *many* of course&#8230;) that some times I get overwhelmed. I have my blogs, which I am seriously behind on all of them, I have some other larger hush-hush projects happening, and I am really needing to get started on the new WAG website. I want that going before the end of the year.</p>
<p>So yeah, I been slacking. I got sick for  bit, had a death in the family, had to struggle with some drama that didnt sit well with me from Vegas,  (No I will not elaborate&#8230;.) and its been difficult to be motivated through all this. And meanwhile, while I am already trying to keep my emotions and physical and mental health in check&#8230; I met a boy.  OMG and he is awesome. As awesome as the one I already have. That is impressive. (Also, No more elaboration needed&#8230;)</p>
<p>So hopefully, if I missed something or am running late or never on something, you can and will forgive me&#8230;. Maybe give me a *Gibbs* smack to the head and kick-start my focus again&#8230;. I am kind of all over the place right now. That happens from time to time&#8230;.</p>
<p>And there is never enough time.</p>
<p>&nbsp;</p>
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			<media:title type="html">marcianna</media:title>
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		<title>Busy Busy Blogger Bee (Version 11.9.23)</title>
		<link>https://manicramblings.wordpress.com/2011/09/26/busy-busy-blogger-bee-version-11-9-23/</link>
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		<pubDate>Mon, 26 Sep 2011 15:50:19 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Busy Busy Blogger Bee]]></category>
		<category><![CDATA[alzheimers]]></category>
		<category><![CDATA[blogging]]></category>
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		<category><![CDATA[insiration]]></category>
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		<category><![CDATA[MS]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[sculpture]]></category>
		<category><![CDATA[summer]]></category>
		<category><![CDATA[sustainable living]]></category>
		<category><![CDATA[yoga]]></category>

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		<description><![CDATA[This month is the anniversary of my third year with this blog. Most of which has been complete nonsense, and vast gaps in time, but the fact I am still doing it is kind of  a miracle on its own. I am very ADHD like that. So to celebrate, I&#8217;m going to try something new and a [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=565&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>This month is the anniversary of my third year with this blog. Most of which has been complete nonsense, and vast gaps in time, but the fact I am still doing it is kind of  a miracle on its own. I am very ADHD like that. So to celebrate, I&#8217;m going to try something new and a bit different. I&#8217;m going to recap what blogs I have been reading for the past season. Let you know about things I have found interesting, creative and useful. Though my blogroll is mostly made up of fellow Narcolepsy bloggers, I am reading things from others as well on a variety of different subjects. I wanted to take the time to share these with you. I think the best way to explain it is to just do it. So jump right in the waters fine! I would hope that you take the time to explore these post also!</p>
<p><span style="text-decoration:underline;"><strong>Top 5 Fave Blog Post from Summer 2011:</strong></span></p>
<ol>
<li><strong>Life in a New Garden</strong> <a href="http://asonomagarden.wordpress.com/2011/06/13/life-in-a-new-garden/">http://asonomagarden.wordpress.com/2011/06/13/life-in-a-new-garden/</a>  Been reading this womans work for a while now and I just love her blog! I often wish I had the energy to all the incredible things that she does. This post from this last summer (though &#8220;technically&#8221; still in spring,) Was really a great thing for me to read that week. Having recently uprooted and moved myself, it was nice to see someone besides myself doing that also. Made me feel just a little less alone in the world&#8230; and inspired me to keep moving forward while holding the past close to my heart.</li>
<li><strong>Kids in Yoga</strong> <a href="http://aspenandella.wordpress.com/2011/06/22/why-is-your-kid-in-my-yoga-class/">http://aspenandella.wordpress.com/2011/06/22/why-is-your-kid-in-my-yoga-class/</a> WHOA! Loved this blog post! I can sooo understand the sentiment of that. Some places have rules for a reason. And sometimes that rule is no kids. Now, Shortly after this blog came out the whole &#8220;No kids in various places&#8221; controversy started and I suddenly felt a little tied. I love kids, I love my families kids, I love my friends kids, Kids are awesome. Mostly. The problem with kids these days is not the kids it is the parents. There seems to be an onslaught of piss poor parenting happening in this country right now and it is VERY irritating.  If your kids have to be with you somewhere, then take the time to &#8220;be with them&#8221; also. Not just have them haphazardly tag along. Because I do NOT like having to tell your child to take the freaking plastic bag off their head in the middle of the Walmart parking lot while you are deeply engrossed in your text messaging. Whatever it is can freaking wait till your children are safely buckled in. If you&#8217;re not going to watch your kids while you&#8217;re out, find someone who will.  (YES that totally happened. GRRR!) Oops. Mini rant! ^_^</li>
<li><strong>How to Deal&#8230;    &#8230;Chronic Illness </strong>   <a href="http://msmeans.wordpress.com/2011/08/15/how-to-deal-with-stigma-or-bias-against-chronic-illness/">http://msmeans.wordpress.com/2011/08/15/how-to-deal-with-stigma-or-bias-against-chronic-illness/</a> This was an accidental find this summer. And something I really needed to hear. I immediately subscribed to this blog because of this post right here. Sometimes The stigma of having a disability is so difficult to deal with. It&#8217;s just really nice to have someone else be able to put into words how to deal with this sort of thing.  Though we suffer from very different illnesses, She is quickly becoming a favorite of mine.</li>
<li><strong>Humbled</strong> <a href="http://rantingsofaloon.wordpress.com/2011/08/12/humbled/">http://rantingsofaloon.wordpress.com/2011/08/12/humbled/</a><br />
I first saw this guys blog as a result of him becoming freshly pressed. The pictorial story of Paul and Mary was just so incredibly beautiful, that it would have brought tears to anyones eyes. But, it wasn&#8217;t until He wrote this post here that I decided to subscribe. So many people who are freshly pressed just keep on doing their regular thing and never really mention getting that honor. The fact that he addressed it and in such a wonderful way, made him all the more human to me, and his writing since then has been reflective of that. I Include him in this list because though I have never been freshly pressed, I have been blessed with a significant uprise in my statistics lately. This post reminds me, how I should never take for granted that someone somewhere is taking the time out of their day to listen to what I have to say. And that is extremely humbling indeed.</li>
<li><strong>The Strength of Stone and the Hope of Light</strong>  <a href="http://districtofsculpture.wordpress.com/2011/08/28/the-strength-of-stone-and-the-hope-of-light/">http://districtofsculpture.wordpress.com/2011/08/28/the-strength-of-stone-and-the-hope-of-light/</a> Julie Flygare AKA: REM Runner, Just blows me away with every post. I started following her REM Runner blog a long time ago which led me to find her photography page and This unique blog of hers called District of Sculpture which is about sculptures in DC. She is able to combine her amazing photography with her excellent ability to write in a dance of words and pictures that just leave you spinning in awe. I truly saved the best for last here. I had a difficult time choosing which was my favorite of hers this summer, and decided to go with her post about the New MLK Memorial. She had clearly been working on this in her head for a good long time if you pay attention to the photographs. Some of them had to have been taken in the spring! Having recently started an art blog of my own, I hope some day to be able to do as much justice to the work and artists I write about as she does here commemorating this historic addition to our nations capitol.</li>
</ol>
<ul>
<li><strong>Best Blog of the Summer: </strong></li>
</ul>
<p>I had a rough summer. Being able to go through the archives of <a href="http://msmeans.wordpress.com/2011/08/15/how-to-deal-with-stigma-or-bias-against-chronic-illness/">http://msmeans.wordpress.com</a> was very helpful to me. Thank you Carolyne Marshall for being such an inspiration.</p>
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		<title>Marie Claire Opens Our Eyes to Narcolepsy</title>
		<link>https://manicramblings.wordpress.com/2011/09/17/marie-claire-opens-our-eyes-to-narcolepsy/</link>
		<comments>https://manicramblings.wordpress.com/2011/09/17/marie-claire-opens-our-eyes-to-narcolepsy/#comments</comments>
		<pubDate>Sun, 18 Sep 2011 00:24:02 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Boston Marathon]]></category>
		<category><![CDATA[Cataplexy]]></category>
		<category><![CDATA[health]]></category>
		<category><![CDATA[Marie Claire]]></category>
		<category><![CDATA[Narcolepsy Network]]></category>
		<category><![CDATA[National Invisable Chronic Illness Awareness Week]]></category>
		<category><![CDATA[Sleep Disorders]]></category>
		<category><![CDATA[Wake Up Narcolepsy]]></category>

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		<description><![CDATA[  In the Health section of Marie Claire&#8217;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&#8217;s story is told marking how she came to [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=573&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p style="text-align:center;"> </p>
<p><a href="https://manicramblings.wordpress.com/wp-admin/www.marieclaire.com"><img class="aligncenter size-full wp-image-580" title="marie claire " src="http://manicramblings.files.wordpress.com/2011/09/marie-claire-covers-edited1.jpg?w=470&#038;h=344" alt="" width="470" height="344" /></a></p>
<p>In the Health section of <a href="http://www.marieclaire.com/" target="_blank">Marie Claire&#8217;s </a>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.</p>
<p>On pages 274 and 277 of the latest issue, Julie&#8217;s story is told marking how she came to realize her disorder, and the struggles she had during that time. It&#8217;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 &#8220;awareness&#8221; story does not end there.</p>
<p> Since Julie&#8217;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 <a href="http://www.narcolepsynetwork.org/news-and-events/conferences/narcolepsy-network-26th-annual-patient-conference/" target="_blank">Narcolepsy Network Annual Conference</a> in Las Vegas, Nevada.  Note to self: Do Not Miss! ) An avid runner, Julie started a blog about running with narcolepsy in 2009 called <a href="http://remrunner.blogspot.com/" target="_blank">REM Runner </a>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 <a href="http://wakeupnarcolepsy.org/" target="_blank">Wake Up Narcolepsy</a> and is training again to run next year. Also an incredible photographer she has a <a href="http://www.julieflygarephotography.com/" target="_blank">website of her work</a> and a blog called <a href="http://districtofsculpture.wordpress.com/" target="_blank">District of Sculpture</a> about monuments great and small in the DC area. Having just turned 28, Julie is writing a medical memoir about life with narcolepsy.</p>
<p>Wow that all sounds so incredibly plagiarized. Haha. Oh well, I tried. Moving on, let me tell ya what I<em> really</em> think&#8230;</p>
<p>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.</p>
<p>There are days, when I just wake up and think.. &#8220;Nope. DO NOT WANT.&#8221; 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&#8217;t think any of us do.</p>
<p>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&#8217;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: &#8221;Be the change you want to see in the world.&#8221; Julie is bravely carving that path, all we have to do is follow her example.</p>
<p>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 <a href="http://invisibleillnessweek.com/" target="_blank">National Invisable Chronic Illness Awareness Week</a>. 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.</p>
<p>Want to be in the Julie Fan Club? As far as I know there isn&#8217;t one. And I find fan clubs creepy, so if there was I wouldn&#8217;t tell you. But never fear, you can follow her on her blog and on Twitter using the following links:</p>
<div id="attachment_578" class="wp-caption alignleft" style="width: 179px"><a href="http://manicramblings.files.wordpress.com/2011/09/jflygare22.jpg"><img class="size-medium wp-image-578" title="Julie Flygare" src="http://manicramblings.files.wordpress.com/2011/09/jflygare22.jpg?w=169&#038;h=300" alt="" width="169" height="300" /></a><p class="wp-caption-text">Julie Flygare</p></div>
<p><a href="http://remrunner.blogspot.com/" target="_blank">REM Runner Blog</a></p>
<p><a href="http://twitter.com/#!/RemRunner" target="_blank">@RemRunner on Twitter</a></p>
<p><a href="http://www.julieflygare.com/Site/Welcome.html" target="_blank"> Contact and other information. </a></p>
<p style="text-align:center;"><strong>Congrats Julie! </strong></p>
<p style="text-align:center;"><strong>We are all so happy for you!</strong></p>
<p style="text-align:center;"> </p>
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			<media:title type="html">marcianna</media:title>
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			<media:title type="html">marie claire </media:title>
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			<media:title type="html">Julie Flygare</media:title>
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		<title>Tag! You&#8217;re It!</title>
		<link>https://manicramblings.wordpress.com/2011/09/04/tag-youre-it/</link>
		<comments>https://manicramblings.wordpress.com/2011/09/04/tag-youre-it/#comments</comments>
		<pubDate>Sun, 04 Sep 2011 21:12:40 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[Advocacy]]></category>
		<category><![CDATA[Cataplexy]]></category>
		<category><![CDATA[freinds]]></category>
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		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=540</guid>
		<description><![CDATA[Remember pre-diagnosis? How badly that sucked? Remember just simply NOT knowing what in the freaking yellow was wrong with you? And how frustrating that was? It&#8217;s just so nice to finally have answers, even if they are answers we don&#8217;t want to hear.  Since you have been diagnosed with Narcolepsy. How many other people who have never [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=540&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Remember pre-diagnosis? How badly that sucked? Remember just simply NOT knowing what in the freaking yellow was wrong with you? And how frustrating that was? It&#8217;s just so nice to finally have answers, even if they are answers we don&#8217;t want to hear. </p>
<p>Since you have been diagnosed with Narcolepsy. How many other people who have never heard of it till meeting you, have gone to the doctor and found they had it too? Has anything like this happened to you? If it has, was it just chance? Or were you in hardcore advocate mode?</p>
<p>This has happened to me. I can credit myself with 5 confirmed Diagnosis&#8217;s. (And no, not all family either.) There are two on the horizon also as soon as they go to the freaking doctor! I really can&#8217;t count them though as I am still in suspicion mode. But I mention them and I will explain why in a bit.</p>
<p>There are those who are so glad they have met me, because they are so happy to have answers and are able to get treatment and be semi functional again. And there are those who wish they didn&#8217;t know about me, because when they got their Diagnosis too, suddenly their entire lives changed and they resent me for it. Such is the stigma of Narcolepsy. Then there are those who know me, suspect they have it and refuse to go get tested because they see my struggles and what I go through and how people treat me, and they don&#8217;t want that for themselves. They are clinging desperately to normal. Geez and I can&#8217;t blame them.<br />
(But now that I have seen Cataplexy and have it myself and know what it is, there is no hiding that from me! I see you punk! You know I am talking to you little brat!)</p>
<p>Anyway, there is no moral of the story today. Just something that was on my mind. How having a diagnosis is a blessing and a curse. And as much as I love advocating and bringing more awareness to people, the nasty game of tag we play sometimes, is disheartening.</p>
<p>No one ever really wins.</p>
<p>And none of us like to be the one who tagged you and said&#8230; &#8220;IT&#8221;.</p>
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			<media:title type="html">marcianna</media:title>
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		<title>Walk The Walk</title>
		<link>https://manicramblings.wordpress.com/2011/09/02/walk-the-walk/</link>
		<comments>https://manicramblings.wordpress.com/2011/09/02/walk-the-walk/#comments</comments>
		<pubDate>Fri, 02 Sep 2011 04:02:17 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=535</guid>
		<description><![CDATA[Usually I try to participate in things going on around me. With in reason of course. I am limited to what I can do. I am either sleeping too much from Narcolepsy, or other related side effects,  in too much pain from Fibromyalgia, or to annoyingly paranoid from Anxiety attacks. All these thing wear me the frak out.  (I also suspect [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=535&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Usually I try to participate in things going on around me. With in reason of course. I am limited to what I can do. I am either sleeping too much from Narcolepsy, or other related side effects,  in too much pain from Fibromyalgia, or to annoyingly paranoid from Anxiety attacks. All these thing wear me the frak out.  (I also suspect I have other issues going on too, But I am in no mood to address them yet, so I am stalling for a bit.) So yeah&#8230; boo hoo about all that shit whatever&#8230;</p>
<p>My point was that I will try to do things when I can I volunteer, I write these obnoxious blogs, try to be helpful to people. etc etc&#8230; but I can&#8217;t be all roses all the time. I&#8217;m sick too. There are days when I get up and I am mad and think how it&#8217;s not fair too. And then there are days where I just don&#8217;t fraking get up at all.</p>
<p>That being said, I need to start paying more attention to when am I really out of sorts  and when am I just assuming I will be so I avoid things just incase. How much in my life have I missed out on simply because I assumed I *couldn&#8217;t* do something, so I never even tried?How many wonderful experiences and how many new friends did I not meet? The very thing I have literally on this very blog warned others not to do I have caught myself doing. Becoming apathetic about my life and my future.</p>
<p>Over the summer I participated in a 60 for 60 Challenge through No Fizz USA. It was easy enough once you got the hang of it and I don&#8217;t drink soda anyhow, so&#8230; no biggy right? I did all right. Now they Are doing a Walk The Walk Challenge. ( <a href="http://www.nofizzusa.org/wtw/">www.nofizzusa.org/wtw/</a> )And I immediately said no. I can&#8217;t compete with that. How can I clock how far I have walked every day for all of September when most of the time, I never get out of bed let alone leave my house. (Seriously, the Fibro has gotten bad since I moved south. I think Humidity is a huge factor here. Might as well be the dead of winter in Ohio.) So I said no to this challenge *assuming* It was something I cannot do.</p>
<p>The only person who sets those limitations is me. And that is pretty shameful. I freaking know better than that. So I am changing my mind. I am going to sign up probably tomorrow because I am tired and need to go to bed. I know there will be people walking circles around me. I know I likely wont hit 10 miles all month. But It&#8217;s not about the challenge against other people, it&#8217;s about the challenge to myself.  If I get out of bed just one time for the sake of just getting up and moving that day because of Walk the Walk, I am already going to be winning.</p>
<p>A very good friend of mine reminded me it&#8217;s about the attitude. Not the illness. Sounds so weird hearing my own words come from someone elses mouth.  Perhaps we all need to be reminded from time to time. Even the glitter queens like me.</p>
<p>( My beloved Irene, Been a very bad day, of which more than half of it was spent in bed.  Im only good for ranting tonight, not so much for working, will have it up very soon I promise.)</p>
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		<title>Social Media Silence = Reality</title>
		<link>https://manicramblings.wordpress.com/2011/08/31/social-media-silence-reality/</link>
		<comments>https://manicramblings.wordpress.com/2011/08/31/social-media-silence-reality/#comments</comments>
		<pubDate>Thu, 01 Sep 2011 01:14:45 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[addiction]]></category>
		<category><![CDATA[Facebook]]></category>
		<category><![CDATA[freinds]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[Twitter]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=530</guid>
		<description><![CDATA[On this day in 2009 My status update on Facebook was as such: &#8220;The Reality of Reality may be more real than what you perceive Reality to be&#8230; (That makes more sense in my head than in REALITY I fear&#8230;)&#8221; &#160; So yesterday, my friend Chris, Aka &#8220;Agent C&#8221; from &#8220;The Agency&#8221;(Still lmao about that btw!),  questioned my [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=530&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>On this day in 2009 My status update on Facebook was as such:</p>
<p><strong><em>&#8220;The Reality of Reality may be more real than what you perceive Reality to be&#8230; (That makes more sense in my head than in REALITY I fear&#8230;)&#8221;</em></strong></p>
<p>&nbsp;</p>
<p>So yesterday, my friend Chris, Aka &#8220;Agent C&#8221; from &#8220;The Agency&#8221;(Still lmao about that btw!),  questioned my current sanity, and for good reason. I recently had a rather disturbing bout with Paranoia. It comes and goes. Happily&#8230;. rarely. But when it does it is quiet amusing even to myself later on. With Narcolepsy, or any other disorder that messes with your head even a tiny bit, Delusional happens sometimes. And until you can get the right med combo going&#8230; which can take years of trial and error, you just got to roll with it.</p>
<p>Anyhow, Chris is concerned I am spending too much time being involved with social media. Apparently a person can become addicted to such things. He thinks I need to spend more time with actual physical people. especially considering my social anxiety issues. (::eyeroll:: guess who is a psych major! LOL, kidding Chris!)   </p>
<p>So he challenged me to 24 hours of no Facebook or Twitter.  Pfht. Whatevs. Not a problem I say. I do not have an addiction to these things! But to be on the safe side I willingly turned over my passwords to him and he literally locked me out. Not just locked me out, He turned of my Phone apps too.  ( I totally thought I would slide that past him&#8230; but alas, I did not.)</p>
<p>So for 24 hours, I was without Facebook or Twitter. I could still use my email. I could still use my phone and text messaging. I was not with out communication from my family or my peers. I just could not use those two particular entities of the world-wide web.</p>
<p>OMG I FELT SO STRANDED AND ALONE!<br />
Ok not really, but still It was pretty quiet around here.  I didn&#8217;t feel *left out , or uninformed in any way, but I did kind of miss the easy connection to people who understand me well. I ended up calling my friend Melissa-issa-issa and my friend  Mickey,  just to talk. It&#8217;s really good to have friends who understand how my head works. LOL.   </p>
<p>Meanwhile, every time I caught my cats doing something cute, I would whip out my phone and take their picture, only&#8230; I couldn&#8217;t share it with the world!  I caught myself thinking in &#8220;Status Update&#8221; mode, For example, I made  pesto and pasta for dinner last night, and I literally thought &#8220;Yay! Pesto and pasta! Thank goodness for dietary staples!&#8221;  Seriously&#8230; Who thinks that to themselves? It was weird. I kept doing it. I was creeping myself out.</p>
<p>So I still don&#8217;t believe I have an addiction to these things. I am online doing other things like my blogs or working on other projects I am involved in and I happen to leave FB up while I am doing them. I use them to keep my mind occupied on my phone while I am out and about to avoid sleep attacks. These are not addictive behaviors, they are just things I do&#8230; right?</p>
<p>Anyway, I learned a lot from that whole experience. I learned how the actual &#8221;act&#8221; of  status updating and posting effect how our minds actually process information and react to certain things. It is more than a new way of communicating, it&#8217;s a new way of thinking. Knowing this I think will make it easier to understand younger generations to come.</p>
<p>I also learned that there are truly a lot of people out there who are simply unable to get around so this is their social life and I have a new respect for that. I have always known that, but&#8230;. I understand it on a new level now. And I think that will make me a more patient person.</p>
<p>So a day with out social media interaction is highly recommended.  Try it yourselves and see what interesting things come to your mind and how you handle them. I would love to hear your stories too!<br />
I am sooo super glad to be back though!</p>
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		<title>Decaf is for Wusses</title>
		<link>https://manicramblings.wordpress.com/2011/08/22/decaf-is-for-wusses/</link>
		<comments>https://manicramblings.wordpress.com/2011/08/22/decaf-is-for-wusses/#comments</comments>
		<pubDate>Mon, 22 Aug 2011 17:40:09 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[addiction]]></category>
		<category><![CDATA[caffeine]]></category>
		<category><![CDATA[coffee]]></category>
		<category><![CDATA[dairy queen]]></category>
		<category><![CDATA[drug addiction]]></category>
		<category><![CDATA[dunkin donuts]]></category>
		<category><![CDATA[no fizz usa]]></category>
		<category><![CDATA[quit smoking]]></category>
		<category><![CDATA[starbucks]]></category>

		<guid isPermaLink="false">http://manicramblings.wordpress.com/?p=523</guid>
		<description><![CDATA[Today, I miss coffee. I miss it sooo bad I could cry. I really really liked it. I wish I could just do decaf, but not only does it taste different, my mean little brother has it drilled into my head that Decaf is for wusses. So I just can&#8217;t do it. I recently had an Iced Green [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=523&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Today, I miss coffee. I miss it sooo bad I could cry. I really really liked it. I wish I could just do decaf, but not only does it taste different, my mean little brother has it drilled into my head that Decaf is for wusses. So I just can&#8217;t do it.</p>
<p>I recently had an Iced Green Tea Latte from Starbucks. I only get one once a year. Those things are so freaking expensive and of course it immediately put me to sleep. But I loved it soooo much!</p>
<p>Ever since then, I have been having this twitchy like need for caffeine. It&#8217;s horrible. I feel like a crack head. ( I am in no way comparing caffeine drinkers to crack heads, I am just stating how I feel.) I&#8217;m fidgety, doing the finger twisty thing, etc&#8230; I can&#8217;t stop thinking about it. Saturday, my friend came by and surprised me with Dairy Queen, and I suddenly recalled, Moo Lattes. OMG. The hazelnut one were the best! Well, unless you are comparing that to Dunkin Donuts Mocha Coolatta&#8217;s, They of course reign supreme over all. That is an absolute fact not to be disputed. EVER.</p>
<p>So why is it that six months later, I am just now getting withdrawals that I apparently inadvertently triggered by having my one green tea of the summer? How can I make it go away? Because DAMN I am cranky let me tell you! All this over a green tea! (Seriously, because I slipped up and had like a Cherry Coke or two this summer and soda just doesn&#8217;t do it for me.)</p>
<p>The Super *SAD* thing is, if I give in now, and go back to coffee and caffeine, it will only be a matter of time before I start smoking again. The two went hand in hand and I quit both simultaneously.  It has been too long and I can&#8217;t fall now.</p>
<p>I don&#8217;t think I would have survived my first summer in Georgia with out all these nummy hot weather drinks if I had not joined up with the 60 for 60 challenge at <a href="http://nofizzusa.org/" rel="me nofollow" target="_blank">http://nofizzusa.org</a>. I normally don&#8217;t drink a lot of water, or anything else so in order to get in all that water, I definitely had to skip the frozen, over sugary juices and such. I think all the water has been washing everything bad out of my system pretty well too. Maybe I am finally completely clean of caffeine? Maybe that is why that green tea was so intense this year. Cuz now I just cant stop thinking about it.</p>
<p>I am thinking I just need one more Iced Green Tea Latte and I will be good. Just one more. Even a small one. And no whipped cream&#8230;. Now I just need to go get in my change jar to scrape up the cash for it. Maybe borrow it from my neighbor?<br />
This sounds all to familiar. =(</p>
<p>Yay. Hears to my health. &gt;_&lt; (Sarcasm clearly implied.)</p>
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			<media:title type="html">marcianna</media:title>
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		<title>A Post for my PWON&#8217;s</title>
		<link>https://manicramblings.wordpress.com/2011/08/19/a-post-for-my-pwons/</link>
		<comments>https://manicramblings.wordpress.com/2011/08/19/a-post-for-my-pwons/#comments</comments>
		<pubDate>Fri, 19 Aug 2011 05:03:12 +0000</pubDate>
		<dc:creator>Marcianna</dc:creator>
				<category><![CDATA[Narcolepsy Related]]></category>
		<category><![CDATA[food]]></category>
		<category><![CDATA[freinds]]></category>
		<category><![CDATA[hypothalamus]]></category>
		<category><![CDATA[Narcolepsy]]></category>
		<category><![CDATA[nuerology]]></category>
		<category><![CDATA[Planet Narcolepsy]]></category>
		<category><![CDATA[Sleep Disorders]]></category>

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		<description><![CDATA[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 [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=manicramblings.wordpress.com&amp;blog=11363885&amp;post=519&amp;subd=manicramblings&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>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.</p>
<p>I just want to take this opportunity to thank some of you from Facebook for being so inspiring to me. Here is why:</p>
<p>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&#8217;s in the oven with an alarm set and then you don&#8217;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&#8230; Carbs make me sleepy.</p>
<p>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&#8217;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&#8230; had better be strong.</p>
<p>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&#8217;t think I have successfully topped anyone elses dishes yet, I&#8217;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.</p>
<p>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&#8217;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:</p>
<ul>
<li>Autonomic Function Control</li>
<li>Endocrine Function Control</li>
<li>Homeostasis</li>
<li>Motor Function Control</li>
<li>Food and Water Intake Regulation</li>
<li>Sleep-Wake Cycle Regulation</li>
</ul>
<p>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 &#8220;other&#8221; symptoms that we all seem to have in common.<br />
One of those things is a problem with food intake. So many of us don&#8217;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&#8217;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.</p>
<p>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&#8217;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&#8217;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!</p>
<p>My 3 favorite Photo Chefs are:</p>
<ol>
<li>Dawn Marschat Holmes</li>
<li>Mary McEowen</li>
<li>
<div>Dan Mullane</div>
</li>
</ol>
<p>Thanks Guys!</p>
<p>Also Thank you to Jessica Stanton from <a href="http://planetnarcolepsy.com/" target="_blank">Planet Narcolepsy</a> who gave me a quick run down on how the hypothalamus works. (Cuz that whole thing is seriously complicated!)</p>
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