RIP: Peter Hsu - 1920-2013
By The Dreamer on Aug 25, 2013 | In Sleep Apnea, Narcolepsy/Cataplexy, Other Health Issues | Send feedback »
It wasn't until the supper after the service that there was any discussions, where the possibility of mentioning my Narcolepsy would come up. Though I didn't.
The first was a small discussion on sleeping pills, where I thought of mentioned that I'm on really great stuff that really puts me to sleep now. Totally cured me of being a light sleeper....which was what I become after I started CPAP. Then there was discussions of weight loss and dieting.... I've lost like 60+ pounds since last year.
Only made a slight reference to it being connected to finally getting the diagnosis. Seemed I should know the proper way to explain it....which I didn't find until later when I was flying home.
... it's common for people to gain excessive weight as the disorder developed, as narcolepsy may slow one's metabolism.
And, now that its being managed, things had returned. Though the loss was accelerated in part due to no eating before taking Xyrem, no constant grazing of junk food in trying to stay awake during the day, and some suppression of appetite due to some of the stimulants I've been on since the diagnosis (namely Dexadrine.)
Not like discussions of the Paleo diet or doing Gluten-Free diet for weight loss.
The day eventually ends, and I get to my hotel room about 9pm...where I decide to turn in for a 9:30pm bedtime. The night that I had booked the ticket, after drawing my two syringes of Xyrem, I had noted that I should have about 12 grams left (I've been keeping a log of every dose since I've started and how the bottles will either be bit more or a bit less than 90g, etc. Tend to be on the more side than less (makes me wonder if I'm doing the draws exactly right or not.) So, I had decided that next night I would start a new bottle and use that for the trip.
So, I take my draw....in addition to no pillow alarm, there's also no crystal light in my bag....so its just straight bottled water. I also take some sips to take my evening pills, since I didn't have them with me during supper. And, the rest of the bottle goes into the CPAP.
After I take my first dose.... ugh...the saltiness .... I find that its much too warm in the room still, so I take a chance and make my way to the A/C and turn it down some more.
So, I'm in bed at 9:30pm....so alarms are set for 1:30am and 5:30am. Hmm, that's the time that my great aunt's shuttle is to pick her up for her airport departure.
1:30am alarm comes, and I take my next dose....I don't remember it being salty though, guess I'm still sleepy enough to not care this time. I then wake a bit before 5:00am. The time great aunt is to get her wake up call. Doesn't seem like that would be much time to get ready....but things are bit more complicated for me.
While rolling over to see what time it was, I loosen the condensation in my CPAP hose...and the rainout turns into gurgling. So, I'm awake, I might as well get up...then deal with the rainout and try to sleep the rest of the way to my alarm.
I eventually, head out of the room at about 6:00am, to see that the shuttle for my great aunt had finally arrived. I wander down in search of breakfast, which wasn't to start until 6:30am, but I'm not the only person there looking for it, so they let us in. Afterwards I go back to room and spend some time finally using some of the free Internet waiting for it to be 8am when I'm to meet my mother for breakfast.
Earlier when I was having breakfast on my own, I had seen my cousin Charissa and Derek go by to workout....later when I'm back with my mother, they come in for their breakfast. So, we move over to join them for a bit and chat.... Charissa mentions that we should have a family reunion again sometime, which we haven't had any without her mother to organize. Perhaps her sister Cathy should step up and organize our next one.
It was kind of nice seeing Charissa and Derek again, which I guess hasn't been since my cousin June got married in 2006. Had wondered when I would see Cathy again....even though I've been in her neck of the woods since, namely when I went to my first NN Conference in 2010, in Crystal City, VA.
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