March 5, 2005

Still Narcoleptic

It's been so long since I've been here last. I've been so busy using my little spurts of time to try and get things done around here...yet they never seem to be finished, lol. I've been having some tough days this winter. After almost six years of chronic and undiagnosed muscle pain along with five of those years suffering like hell with the crappy medication treatments for Narcolepsy (pain surfaced upon first beginning medication treatment for Narcolepsy), it took one final doc (of many) to check my trigger points for fibromyalgia. (which were positive) I'm so pissed yet so relieved at the same time. It was left untreated all of this time as a result of nothing showing up in any of the many bloodworks that were ordered by multiple docs. My stupid sleep doc has suggested at times that the pain I suffered with might be "psychological" as a result. I never once conceded to that and I'm so damned glad I was stubborn enough not to. I was in agony, and those medications that I could not tolerate time and again only made it worse. I don't know if this crap will ever go away now. Sometimes I just want to curl up and die in my sleep just for relief. Then again, I wouldn't want to leave my kids like that. I guess that's where my "mysterious" high blood pressure that surfaced along with the pain upon beginning med treatment for Narcolepsy came from. I'm thankful for some of the relief I am finally getting now as I take these pain well as a steadily decreasing blood pressure. I just wish they worked better and lasted longer. Med adjustments are not finished yet though. I'm hoping that by the time they are finished, I won't have to waste my money any more on blood pressure pills that I wouldn't have needed in the first place if my complaints of pain were taken a little more seriously....correction...a lot more seriously. I'm so pissed...sorry I have to vent. this time I still continue to take selegeline twice a day for the Narcolepsy and xyrem at night for cataplexy. I guess I won't know how effective each of those meds truly are until the fm is more under control. Who knows? Maybe the N isn't as bad as first thought..some of this crap could be the FM....only time and appropriate treatment shall tell. Until then...

Posted by Lis at 3:59 PM | Comments (3)

December 15, 2004

Happy Holidays

I can't believe it's December already. Where does the time go? I've been having some pretty bad days. I have to wait until Feb to be evaluated for Fibromyalgia and CF. Meanwhile, I remain with all of this undiagnosed pain for almsot the past five years. I tire so easily. I'm forcing myself to continue a daily mild exercise regimen depite the pain, but my whole body pays for it the rest of the day daily. It's been 3 months now, and as the temperature begins to plummet, the pain worsens even more. My poor muscles, geez. They've been through the ringer and back. My sleep still sucks. I can't seem to get hardly any deep sleep anymore. It's so aggravating. My naps are just plain awful. Sometimes, I just don't know how I'm going to make it through another day...but I always seem to regardless.

Posted by Lis at 1:26 PM

November 6, 2004


I'm so drowsy. I don't know where the time has gone today. Everything is so blended together. It's taking every last bit from me to even post this, but I don't want to leave it blank until next month. I'm glad I can type with my eyes closed, cause they're too tired to stay open. I can't even think about the events of today in order, that's how hard it is when your'e this sleepy. At one point, I went to the foodstore..and I was alright until the end of the trip in line...when the sleepiness began to intrude once again. I don't know how I made it home. Yes I do. Pure grace. I have to go shut my eyes now. My arms are starting to fall asleep on me too, lol.

Posted by Lis at 10:09 AM | Comments (6)

August 14, 2004

Another sleepy day

I had to pry myself out of bed this morning around 11 am..ugh! My sleep is so off this summer. I'm going to die when the kids start school soon. Today I didn't make it up much past 1pm. Was in and out of sleeps like a flickering lightbulb up through about 4 or 5 pm. Then I dragged myself around the house a bit until the kids returned home from their dad's about 6. I strained to stay somewhat alert for the next two hours, then had to catnap frequently once again. I've been trying to read this book for like...ever now. I used to be able to read a novel in one day before all of this narcolepsy crap set in, geez. Now it takes me weeks at times. grrrrrrrrrrrrrrrrrrrrr. Wierd. I kept having to re-read the same paragraph over and over again because I kept drifting off every time. Hey, at least I can read even little bits at a time now. Two years ago or so, I wouldn't have been able to do even that. Oh my, it's time to stop. Do you know how many times I had to retype even what I'm typing now because I keep drifting? It takes me forever, I swear. I fall asleep right here....then when my eyes open, I see all the nonsense and spelling errors, I fix them..drift off again...and the process repeats. I will type on here over writing any day! And to think I used to write all the time, hah! I love back space. I love delete. I love spell check, hehe. I love the fact that this won't post until I fix all the boo boo's first. I'm going now. I don't even think I'll remember much of what i'm rambling now. Good night.

Posted by Lis at 11:20 PM