Sunday, March 09, 2008

 Happy Sleep Awareness Week!!

And happy belated Narcolepsy Awareness Day. That was yesterday, AKA "Suddenly Sleepy Saturday". I would have wished you a happy day yesterday, but I confess, I slept through it ;) Seriously though, I kinda did. I draaaaaaaaaaaaaaaaaaggged my ass out of bed at 1130ish because I had a lunch date with Deena. We were trying Chili's new Smokehouse Burgers, for which we both got free coupons. I do have to say, it was the BEST burger I ever had. Ok, it was free, so that might have helped, but seriously, the thing RAWKED! My only complaint about it was that it was too big! Go figure. Anyway, after lunch I came home and crawled back into bed. Because I had to give up my health insurance due to financial reasons, I have been off my narcolepsy meds. This means my sleep is screwed. I want to sleep all day, cannot keep myself awake, and then at night I have problems sleeping. My HH's have increased, ditto for the sleep paralysis. I forgot just how bad it was before I had been diagnosed 8 years ago. It's amazing how tough it is to live with this disease untreated. I will forever be thankful to Drs. Allen and Early at Johns Hopkins Bayview Neurology Dept for diagnosing me and working so hard to find the appropriate treatment for me. For those of you who don't know, Narcolepsy is caused by a defective hypothalamus in the brain and the failure to secrete hypocretin. They are unsure what causes this screwiness, but the most common belief is that it is autoimmune or genetic. At this point there is no cure for Narcolepsy, they just treat the symptoms. And for me, this has worked well for the last 7 or so years. I am actually hoping that taking this holiday from my meds makes me do better when I go back on. I have had issues with building up a tolerance to them and having to have them increased in dosage, so maybe I'll be able to go back down. But until I am medicated again I will just continue on sleeping my days away. It would really suck if I had to function, but for now I don't have to. And once I have to again, I'll be medicated so life will be swell. In the meantime, take care of yourselves and your sleep. It's our most precious commodity.

Posted by Acinom @ 9:21 PM