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	<title>.:: Yolospat ::. &#187; Narcolepcy</title>
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	<description>You Only Live Once So Plan And Try</description>
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		<title>Medical Updates</title>
		<link>http://yolospat.com/2009/04/28/medical-updates/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=medical-updates</link>
		<comments>http://yolospat.com/2009/04/28/medical-updates/#comments</comments>
		<pubDate>Tue, 28 Apr 2009 11:49:27 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Blogging]]></category>
		<category><![CDATA[Brendan]]></category>
		<category><![CDATA[Doctors]]></category>
		<category><![CDATA[Fibromyalgia & Chronic Fatigue]]></category>
		<category><![CDATA[Frustration/Anger]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Narcolepcy]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=391</guid>
		<description><![CDATA[I&#8217;ve been sleeping for the majority of the time now that I&#8217;m not taking my thyroid meds. I think my energy has depleted at least 75% because of it. Something I&#8217;m going to point out to Dr. S when I see him next week. My pulmonary doctor did my allergy test. There were about 80 [...]]]></description>
			<content:encoded><![CDATA[<p>I&#8217;ve been sleeping for the majority of the time now that I&#8217;m not taking my thyroid meds. I think my energy has depleted at least 75% because of it. Something I&#8217;m going to point out to Dr. S when I see him next week. </p>
<p>My pulmonary doctor did my allergy test. There were about 80 different things they were testing for. If it wasn&#8217;t so ironic and I didn&#8217;t already sort of know it anyway, the one and only thing I&#8217;m allergic to is my cats, out of 80 different things. That&#8217;s good since I&#8217;m in allergy america.</p>
<p>I have tell a funny about my husband. They take me out to do a breathing test on one of their machines so as I&#8217;m heading back to room 8 where they placed us in the first place I thought I smelled something foul. It got stronger the closer I got to my room and when I walked into my room, BAM.</p>
<p>&#8220;Did you fart?<br />
&#8220;About a min after you left, you can still smell it?<br />
&#8220;You can smell it all the way out in the hall!!!!!!!&#8221;</p>
<p>So here I am with two magazines wafting the air, hoping the smell either goes away or just gives up and stops stinking. </p>
<p>I saw my doctor coming so I put away the magazines really fast and sat on the bed. He walks in, looks around and says, </p>
<p>&#8220;Um, lets use the room next door, I&#8217;ll get one of the nurses to do your allergy test&#8221;</p>
<p>My husband cleared a room. With his butt. I was so embarrassed at the time, but the minute I walked out I was laughing. I told him he couldn&#8217;t do that and to go to the bathroom next time. He&#8217;s the only one I know who can have scentless farts so you never know what your going to get. Not that day. That day, he literally cleared a room.</p>
<p>They did schedule an endoscopy on me for this Thursday to look at the blockage in my airway and take a possible biopsy. They will put me out for a small time and my boss told me if I need to take the day and work from home that would be fine. I told him we&#8217;ll see.</p>
<p>Yesterday the majority of us went home because the A/C wasn&#8217;t working and it got to be 90 degrees in the office. I was sweating like a whore in church. I hope they have it fixed today.</p>
<p>Not sure why I&#8217;m up early but it feels good and I slept in the recliner last night so I don&#8217;t have any sort of backache. I give my MRI scans to my pain doc next week. I want to try and scan them all first tho, even if they are a little big. What&#8217;s a good stitching program?</p>
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		<title>Insomnia &amp; How the body works</title>
		<link>http://yolospat.com/2009/03/30/insomnia-how-the-body-works/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=insomnia-how-the-body-works</link>
		<comments>http://yolospat.com/2009/03/30/insomnia-how-the-body-works/#comments</comments>
		<pubDate>Mon, 30 Mar 2009 07:39:12 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Blogging]]></category>
		<category><![CDATA[Doctors]]></category>
		<category><![CDATA[Fibromyalgia & Chronic Fatigue]]></category>
		<category><![CDATA[Frustration/Anger]]></category>
		<category><![CDATA[Geek]]></category>
		<category><![CDATA[Health]]></category>
		<category><![CDATA[Narcolepcy]]></category>
		<category><![CDATA[Sleep]]></category>
		<category><![CDATA[Work]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=367</guid>
		<description><![CDATA[I&#8217;ve been having some really horrible sleeping problems. My sleep meds have decided to quit working on me giving me nothing left to aid in the sleeping process so after a few days of that the body starts giving into the exhaustion to where I was finding myself asleep at my desk (which is quite [...]]]></description>
			<content:encoded><![CDATA[<p>I&#8217;ve been having some really horrible sleeping problems. My sleep meds have decided to quit working on me giving me nothing left to aid in the sleeping process so after a few days of that the body starts giving into the exhaustion to where I was finding myself asleep at my desk (which is quite comfortable to sleep at btw).</p>
<p>Finally, I was able fall asleep and it took a full 24 hours for my health bar to regain its full strength. The bad thing about this is it&#8217;s 3:30am so there isn&#8217;t much luck going back to sleep after I&#8217;ve already woken up. I tried, didn&#8217;t work.</p>
<p>I did however take another fall in the bathroom. I think my shoes were still wet from being out on the back porch trying to get my dog to come back inside I landed square on my right knee. For people with Fibro, falling has to be the worst. It&#8217;s not just a fall. It&#8217;s a total body flare up so not only does my knee hurt but my body feels like its just been through the meat grinder. Ouch. </p>
<p>My plan is to work early and go see my new doctor at 1pm. I hope he helps. I&#8217;m really tired of this doctor hopping. Mom keeps telling me there is a doctor out there that will help me and after a year my 8 ball is saying that things are looking grim. I&#8217;ll keep trying. What else can I do at that point?</p>
<p>I&#8217;m looking forward to the <a href="http://www.problogger.net/archives/2009/03/25/31-days-to-build-a-better-blog-sign-up-here/">31 days to a better blog</a> challenge.</p>
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		<title>Happy Valentine&#8217;s Day!</title>
		<link>http://yolospat.com/2009/02/14/happy-valentines-day/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=happy-valentines-day</link>
		<comments>http://yolospat.com/2009/02/14/happy-valentines-day/#comments</comments>
		<pubDate>Sun, 15 Feb 2009 03:01:52 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Brendan]]></category>
		<category><![CDATA[Family]]></category>
		<category><![CDATA[Narcolepcy]]></category>
		<category><![CDATA[Sleep]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=333</guid>
		<description><![CDATA[This day comes to be bittersweet. Today 10 years ago was the last time I saw my Father alive. I will never forget our day, and our fights we had that day. We parted so upset with each other that we were on a non-speaking basis. Then I get a call from my Aunt Donna [...]]]></description>
			<content:encoded><![CDATA[<p>This day comes to be bittersweet. Today 10 years ago was the last time I saw my Father alive. I will never forget our day, and our fights we had that day. We parted so upset with each other that we were on a non-speaking basis. Then I get a call from my Aunt Donna who brings my Mother over to my house to tell me the bad news. He&#8217;s had a massive heart attack and he died. A small part of my being always held that shame that it was my fault he&#8217;s gone, that I was the one that broke the camels back. It never occurred to me his father died when he was 20 from heart disease, and his father before him. Through the years after that that shame and guilt took over me and put me in very bad situations for nearly a decade. It wasn&#8217;t a few years after his death my pain of losing my Father became pure knock down hatred and anger. It&#8217;s been that way for years. I hated him, because I started blaming him for all the difficulties in my life. For all my destruction, trying to replace him with men who would just use me and beat me, suck me dry and leave me (except of that was Jason, and I wouldd tell him my fears that by the time we got married my Father would be gone, I was right). I blamed him for ever tear since he died. I hated him for the life that he wasn&#8217;t there to save me from, consciously knowing he <b>couldn&#8217;t</b> save me. He was <i>DEAD</i>, gone, and not coming back. My whole life the only one that ever took care of me was myself. My Mother and I didn&#8217;t have the Mother/Daughter bond that some kids who are adopted never have. It wasn&#8217;t that case with my Father. </p>
<p>He was a hard working man. The most hard working man I&#8217;ve ever seen my whole life. No man could ever fill his shoes. When my Mother started dated her &#8220;special friend&#8221;, I despised him. He wasn&#8217;t anything like my Father. Who was this man that put a twinkle in my Mother&#8217;s eye, who treated her in a way Dad never did. I went into denial about this man who spent <b>MY</b> time with the Mother. Time she should have been spending with me, but I never could let that twinkle in her eye go. This was one she&#8217;s never had before. She was never funny, and make me laugh all the time. Of course I thought it was because of <i>ME</i> but the place I was in was nothing even close to  being a twinkle in any Mother&#8217;s eye. It was something that a Mother would hide and sweep under the rug. It seemed like everyone had forgotten about me. Mom was healing, everyone else close to Dad was healing except me. </p>
<p>This year, I think I&#8217;m finally healing. Not only healing from a painful path, or the horrible things I went to, but healing. I&#8217;m more or less angry about them all right now. Isn&#8217;t that the second step that comes after denial? I think so. I&#8217;m getting there. And It&#8217;s been all by myself. All my myself was the first sentence I said when I was a baby. So far it&#8217;s been true, up until now, when I&#8217;ve had to lean on my husband more than ever. That was another teaching and learning experience that I fought for years. Now I know it&#8217;s ok to learn on your spouse. I know he leans on me quite a bit. It&#8217;s ok for us to lean on each other equally.</p>
<p>So now I&#8217;ve come ten fold. I&#8217;m finally &#8220;growing up&#8221; as they might say. I don&#8217;t have only me to be When Brendan woke up this morning I was surprised by my Valentine&#8217;s day Presents. This is the second holiday holiday we&#8217;ve managed to get each other something.</p>
<p><a href="http://www.flickr.com/photos/22854891@N00/3279324010" title="View 'Valentines day 2009 (Chocolates)' on Flickr.com">
<div style="text-align:center;"><img src="http://farm4.static.flickr.com/3523/3279324010_c21a231716_m.jpg" alt="Valentines day 2009 (Chocolates)" border="0" width="240" height="180" /></div>
<p></a><br /><a href="http://www.flickr.com/photos/22854891@N00/3278500539" title="View 'Valentines Day 2009 (Blue Heart Necklace)' on Flickr.com">
<div style="text-align:center;"><img src="http://farm4.static.flickr.com/3384/3278500539_0cb3432d34_m.jpg" alt="Valentines Day 2009 (Blue Heart Necklace)" border="0" width="240" height="180" /></div>
<p></a></p>
<p>That necklace is a deep blue heart. It&#8217;s beautiful. The other night he told me he loves holidays now. He never had traditional holidays and I&#8217;m born from and my roots are full of deep traditions that I use to dispise until I got married. Then I started thinking, what do I want my kids to have? I want them to have what I did. I want them surrounded by family. On holidays I want to be surrounded by family. Not family that just put up with you because you were present, but true loving family (in my world, my friends are family too, no doubt.) Family is who loves you. That&#8217;s what I want to be around. I wished we could have gone to Fort Knox this weekend if Brendan didn&#8217;t have to work, and if we would have planned it a little better. Anyway, I got Brendan a really nice watch this Valentine&#8217;s Day. It&#8217;s one of those that never needs the battery changed and I don&#8217;t want to give it all away if he reads this from work (guess I sort of did already). More to come later.</p>
<p>Plus, I feel asleep writing this post or about 6 hours. My new desk is just too comfortable. I love it to death.</p>
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		<title>Feeling much better</title>
		<link>http://yolospat.com/2009/02/08/feeling-much-better/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=feeling-much-better</link>
		<comments>http://yolospat.com/2009/02/08/feeling-much-better/#comments</comments>
		<pubDate>Sun, 08 Feb 2009 09:32:45 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Brendan]]></category>
		<category><![CDATA[Family]]></category>
		<category><![CDATA[Fibromyalgia & Chronic Fatigue]]></category>
		<category><![CDATA[Friends]]></category>
		<category><![CDATA[Frustration/Anger]]></category>
		<category><![CDATA[Mom]]></category>
		<category><![CDATA[Narcolepcy]]></category>
		<category><![CDATA[Sleep]]></category>
		<category><![CDATA[Work]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=331</guid>
		<description><![CDATA[I felt better today than I have for a week and a half. I&#8217;m in the middle of changing and switching some of my medication around which has resulted in horrible side effects making me feel completely horrible. Hopefully I&#8217;m on the up-swing at this point. The next hurdle is meeting my new doctors on [...]]]></description>
			<content:encoded><![CDATA[<p>I felt better today than I have for a week and a half. I&#8217;m in the middle of changing  and switching some of my medication around which has resulted in horrible side effects making me feel completely horrible. Hopefully I&#8217;m on the up-swing at this point. The next hurdle is meeting my new doctors on the 23rd of this month in which my Mother is flying over for. Now that I know I have Fibromyalgia along with Rheumatoid Arthritis I will be seeing a husband and wife team of Rheumatologists that have experience in both diseases. </p>
<p>I&#8217;m really disappointed in my doctor at the Fibro &#038; Fatigue Center. I found out that he read some of my labs wrong (have I mentioned this yet? I don&#8217;t remember) and so I&#8217;m off most of the medication he had me on. Well, I&#8217;m off at least 7/8ths of the medication I was before and I&#8217;m already noticing a change and I&#8217;m already noticing that I am feeling better. Plus, the nurses at the Fibro &#038; Fatigue center here in Atlanta have been dropping the ball left and right. My doctor wanted to see every 3-4 weeks and he&#8217;s booked solid for the next 3 weeks which means I won&#8217;t see him for at least 2.5 months which means, I&#8217;m going to be running out of medication .. and FAST. Hopefully my new doctors will work out and I can make an easy transition. Oh, and get this. Dr. C at the Fibro &#038; Fatigue Center treats all his patients with the same plan of action so no wonder I wasn&#8217;t getting better. I&#8217;m just really disappointed in the center when at first it gave me so much hope. Maybe I was grabbing at the last rope I thought was out there, I don&#8217;t know. I just have to find what works and I know it&#8217;s going to be a frustrating battle and my patience will tested big time, well, sort of like now.</p>
<p>So with everything going on, having some severe medication changes, getting sick, being way over-emotional, fighting with the hubby its affected my performance at work and I only hope that they will find some sort of empathy and be patient with me too. The only thing that hasn&#8217;t gone away is the pain, so I&#8217;m still dealing with that. It&#8217;s hard for people to understand because I look well but everything under my skin, including my digestion issues and IBS is a complete mess. I just need all this to come together, and the sooner the better. Not only for me, work, but for family friends and everyone else that is involved. I&#8217;m trying my hardest to hang in there, I really am.</p>
<p>Went to see &#8220;Hotel for Dogs&#8221; tonight. It was one of those cheesy Disney stories, but it was pretty good. Nice and light and funny. I knew the ending as soon as it began but .. I thought it was pretty good. Good, no, maybe just cute. It was cute.</p>
<p>I gotta go to bed now, I&#8217;m tired.</p>
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		<title>My Colorado Trip</title>
		<link>http://yolospat.com/2009/01/31/my-colorado-trip/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=my-colorado-trip</link>
		<comments>http://yolospat.com/2009/01/31/my-colorado-trip/#comments</comments>
		<pubDate>Sat, 31 Jan 2009 07:18:02 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Colorado]]></category>
		<category><![CDATA[Friends]]></category>
		<category><![CDATA[Geek]]></category>
		<category><![CDATA[Narcolepcy]]></category>
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		<guid isPermaLink="false">http://yolospat.com/?p=316</guid>
		<description><![CDATA[I hadn&#8217;t installed MacPorts since I reinstalled OS X and it feels good that its finally back So much easier to install programs. Plus, I&#8217;m a geek. What &#8220;normal&#8221; user would actually go through the mess and even the understanding of MacPorts. Heh. So I&#8217;m going to try and condense down the Colorado trip the [...]]]></description>
			<content:encoded><![CDATA[<p>I hadn&#8217;t installed <a href="http://www.macports.org/">MacPorts</a> since I reinstalled OS X and it feels good that its finally back So much easier to install programs. Plus, I&#8217;m a geek. What &#8220;normal&#8221; user would actually go through the mess and even the  understanding of <a href="http://www.macports.org/">MacPorts</a>. Heh.</p>
<p>So I&#8217;m going to try and condense down the Colorado trip the best I can. I&#8217;ve noticed that when I&#8221;m really emotional about something the best time to deal and/or write about it in a political way is after the fact once I got all my bearing straight and the emotions don&#8217;t out talk my logic.</p>
<p>The first night I got in Uncle Don and Aunt Donna meet Mom and I at at the Armadillo in Lasalle. I couldn&#8217;t believe how much some parts of the towns had changed, and how other parts of the towns hadn&#8217;t changed at all. Like for instance, Platteville. Still the same. The old house I grew up in still looks the same. Grandma Berry&#8217;s house still looked the same inside and out. See, Grandma Berry can&#8217;t see much more than light or dark but when I got up close to her she grabbed the bangs of my hair and started whispering &#8220;jenny jenny jenny jenny jenny&#8221; and when I finally spoke and said &#8220;Yes, Grandma, it&#8217;s Jenny&#8221; she started crying. She can&#8217;t forget me. I might not have been home for 4-5 years but you can&#8217;t forget living right next door to your grand daughter watching her grow up all her life. Seemed like my Mother and I showing up was center of attention and we all know how much I hate that.</p>
<p>I got to see some women, whom I used to give piano lessons to and babysit sit. Now they are grown and have more children than I have pets.</p>
<p><a title="View 'Morning Fresh Farms' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221693354"><img src="http://farm4.static.flickr.com/3361/3221693354_1008f7f5da_m.jpg" border="0" alt="Morning Fresh Farms" width="240" height="180" align="left" /></a>Of course going out to the farm made me miss Uncle Joe and Aunt Martha so much I made Mom promise she would set up a meeting with them too before I left to go home. took pictures of Morning Fresh Farms and then jumped down to Mespaigh cemetery to see the ranch and to see my dad. He was doing ok. I talked to him a bit. <a title="View 'My Dad' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221696892"><img src="http://farm4.static.flickr.com/3475/3221696892_5e9855b785_m.jpg" border="0" alt="My Dad" width="240" height="135" align="right" /></a>I think Mom did too. Sort of weird talking to stone, but whatever. Seems like that was a completely different life back then when he was alive. I think we were all different people back then. I&#8217;m sure I would have had a whole different life. Would I change it? I don&#8217;t know where&#8217;d.</p>
<p>After all the crying and seeing all the family I met all my friends up at the Armadillo in Fort Collins. It was strange. It was so surreal I almost felt drunk without drinking.</p>
<p>It sure was a great night. I never realized now much I missed my friends until that very moment. I had never felt so home sick, for everything back. For my old job back, for my old house back. Not my old life tho. No way. No how. I told them next time we come I&#8217;ll being the hubby so they can all meet them.  I only want to talk about the good parts of the trip so I am going to not talk about doctors and appointments and news and all that other stuff I went to to. I sure didn&#8217;t have problems falling asleep  at all.</p>
<p><a title="View 'Travis and David' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3220853663"><img src="http://farm4.static.flickr.com/3459/3220853663_893eda8db1_t.jpg" border="0" alt="Travis and David" width="100" height="75" align="left" /></a><a title="View 'Matt &amp; girl' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221705110"><img src="http://farm4.static.flickr.com/3494/3221705110_166879236f_t.jpg" border="0" alt="Matt &amp; girl" width="100" height="75" align="left" /></a><a title="View 'Tom' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221705864"></a><a title="View 'Tom' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221705864"><img src="http://farm4.static.flickr.com/3494/3221705864_c2e68fc18c_t.jpg" border="0" alt="Tom" width="100" height="75" align="left" /></a><a title="View 'The Crew' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221709062"><img src="http://farm4.static.flickr.com/3134/3221709062_b95b436941_t.jpg" border="0" alt="The Crew" width="100" height="75" align="left" /></a><a title="View 'The crew' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3220859693"><img src="http://farm4.static.flickr.com/3343/3220859693_2e7c61d51f_t.jpg" border="0" alt="The crew" width="100" height="75" align="left" /></a><a title="View 'The crew' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221709764"><img src="http://farm4.static.flickr.com/3336/3221709764_d2ef49129a_t.jpg" border="0" alt="The crew" width="100" height="75" align="left" /></a><a title="View 'Me and Brooke' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221711066"><img src="http://farm4.static.flickr.com/3433/3221711066_38765afe36_t.jpg" border="0" alt="Me and Brooke" width="100" height="75" align="left" /></a><a title="View 'Brooke' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3221711584"></a><a title="View 'The Crew' on Flickr.com" href="http://www.flickr.com/photos/22854891@N00/3220857069"><img src="http://farm4.static.flickr.com/3409/3220857069_eae5c23843_t.jpg" border="0" alt="The Crew" width="100" height="75" align="left" /></a></p>
<p></p>
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		<title>I&#8217;m going to Colorado!!!!</title>
		<link>http://yolospat.com/2009/01/11/im-going-to-colorado/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=im-going-to-colorado</link>
		<comments>http://yolospat.com/2009/01/11/im-going-to-colorado/#comments</comments>
		<pubDate>Sun, 11 Jan 2009 06:56:58 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Colorado]]></category>
		<category><![CDATA[Family]]></category>
		<category><![CDATA[Narcolepcy]]></category>
		<category><![CDATA[Sleep]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=297</guid>
		<description><![CDATA[Other than sleeping all day, I did manage to clean up the kitchen and put all my meds that require needles in baggies so they are right there when I need them instead of going to 3 different places around the house looking for what I need. I still have the other half the kitchen [...]]]></description>
			<content:encoded><![CDATA[<p>Other than sleeping all day, I did manage to clean up the kitchen and put all my meds that require needles in baggies so they are right there when I need them instead of going to 3 different places around the house looking for what I need. I still have the other half the kitchen to clean which is going to be project in itself.</p>
<p>Mom called me tonight to let me know she got an invite that my Grandma B will be having an open house 90th birthday party. She&#8217;s been really really sick lately and they don&#8217;t expect her to live much longer, so this is really going to be the last time I&#8217;ll probably ever see her. </p>
<p>It will also be the first time of me returning to Colorado since I left so I&#8217;m excited about that. I&#8217;ll be gone from the 18th to the 20th. For all my Colorado friends, call me, IM me, email me and we&#8217;ll all hook up. I miss ya all. The first place we&#8217;re stopping once I get in Colorado on the way home is the Armadillo, the BEST mexican food restaurant <b>EVER!!!!!!</b> I&#8217;m so excited about that. My mouth just started salivating.</p>
<p>I have yet to find a good mexican food restaurant here in Georgia and I have tried <b>lots and lots and lots</b>. I just can&#8217;t wait to have me some good, authentic Mexican food. I&#8217;m hoping to see my Aunt Donna and Uncle Don while I&#8217;m there, along with my Aunt Martha and Uncle Joe. I hope! I wish!</p>
<p>And, for being awake for such a short amount of time, I&#8217;m ready for bed again. I hope something starts helping me soon, oy!</p>
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		<title>Frustrated and Angry</title>
		<link>http://yolospat.com/2009/01/05/frustrated-and-angry/#utm_source=rss&#038;utm_medium=rss&#038;utm_campaign=frustrated-and-angry</link>
		<comments>http://yolospat.com/2009/01/05/frustrated-and-angry/#comments</comments>
		<pubDate>Tue, 06 Jan 2009 04:31:02 +0000</pubDate>
		<dc:creator>Jenny</dc:creator>
				<category><![CDATA[Brendan]]></category>
		<category><![CDATA[Fibromyalgia & Chronic Fatigue]]></category>
		<category><![CDATA[Frustration/Anger]]></category>
		<category><![CDATA[Narcolepcy]]></category>
		<category><![CDATA[Sleep]]></category>

		<guid isPermaLink="false">http://yolospat.com/?p=291</guid>
		<description><![CDATA[My narcolepsy is getting worse. At work if I&#8217;m in the middle of working on a document I just wake up with my finger hitting on some key filling up the page. Often times I have to us only one eye to take away the double vision. The new med they want to try on [...]]]></description>
			<content:encoded><![CDATA[<p>My narcolepsy is getting worse. At work if I&#8217;m in the middle of working on a document I just wake up with my finger hitting on some key filling up the page. Often times I have to us only one eye to take away the  double vision. The new med they want to try on me can&#8217;t be given through the pharmacist or the hospitals, it can only be gotten from the manufacturer itself. (<a href="http://www.xyrem.com/">www.xyremcom</a>)</p>
<p>I finally called the <a href="http://fibroandfatigue.com">FFC</a> center to see what was going on with that. I found out that they hadn&#8217;t even faxed over the paper over. This is the second time in as many months they have failed to fax in my meds. It&#8217;s rather surprising, because this place has a good reputation.  When I told Dr. C about what happened last month he was just so visibility upset about it I thought he was going to spring a leak. I wonder what he&#8217;s going say this time and how upset he might be.  The strange thing is that the staff at the FFC has been excellent so far, much better than I&#8217;ve ever experienced&#8230;so where are these problems coming from?</p>
<p>It&#8217;s not like I want to get anyone fired.  The nurses I do have are great and kind with excellent bedside manner.</p>
<p>But this is my life we&#8217;re talking about.  I&#8217;m falling asleep playing Rock Band with my husband, I&#8217;m falling asleep at work.  Which is not good when my boss or the bigger bosses walk by.  My confusion level during these times make me feel like a doorknob. I randomly fall asleep when I&#8217;m concentrating on something pretty hard.</p>
<p>I will call tomorrow anyway to see if that paperwork has been faxed and I&#8217;m going to request that my doctor call me when he has a minute.</p>
<p>As for the other Fibromyalgia symptoms, I have to have another sleep study done due to my slight sleep apnea so I get to wear one of those scary masks at night. Oh boy, eh? I wonder if the face thing will amplify my snoring. I feel bad for my hubby.  He went to pick up my meds that were due for a refill. I couldn&#8217;t do any of this without him.</p>
<p>I&#8217;m just so frustrated. I&#8217;m using the cane all the time now and I&#8217;ve been enquiring about getting a power chair (I first called the Scooter Store place that you see those commercials for but my new insurance doesn&#8217;t cover it.  What&#8217;s next in the whole meds scene? More to add to the arsenal or less to make me less sane.</p>
<p>And where do I go for all these questions? All the support groups I have found are so pessimistic, where are the people with Fibromyalgia and Chronic Fatigue living happy normal lives? Where are their voices? I&#8217;ve heard they exist, but where?</p>
<p>If I hear one more person tell me it&#8217;s going to be ok. I&#8217;m going to eat them for dinner.</p>
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