Tags: las vegas

Midwest Narcolepsy Support Group

Link: http://lkc.me/mnsg

So…on the last day of the Narcolepsy Network Conference in Las Vegas, I met Lily…and she mentioned this Narcolepsy Support Group that meets by telephone. That I should google for it and check it out…

I kind of forgot about it for a while after I got back from the conference, but then finally went looking for it. Its only a monthly call, and its on the first Saturday of the month….so I missed the first one after the conference.

Today…has been a lazy, gloomy sort of day…and I wouldn’t mind sleeping the whole weekend away to maybe ‘catch-up’. Except that this support group thing had registered in my mind, and I was going to try to make at least this one.

So, I forced myself out of bed…and decided that I should force myself to shower and dress, so that maybe after the call…I would accomplish some other things. Like its been a few weeks since I’ve done groceries…or visited my mailbox at the UPS store (which as expected was packed full of catalogs…but the two amazon.com orders that I had sent there were also there, so at least that was good.) And, as it turned out Flint Hills Breadbasket was collecting donations at the grocery store, so I bought a bag of groceries to give away.

Meanwhile…getting onto the call wasn’t that that great.

I’d call, enter the conference code and be told its invalid…try again, still invalid. And, then have to try calling again. No idea why the code was invalid…just that it was. So, I kept trying. I started about 10 minutes before the start…but didn’t finally get in until about 15 minutes after the start…just as I was about to give up.

Somewhere in the process, it then started repeating back what it thought I had entered….some or all of the digits were being doubled. Why? I suppose I should’ve used my cordless phone…though I haven’t gotten around to putting new batteries in it yet, so it probably wouldn’t have lasted. So, I tried something else to make the call….I was in, but it wasn’t great. And, apparently it was really bad if I tried to be heard. I did hear of other people commenting about what they were on to be on the call as not being good as well.

But, things got a little better after I found a headset to use. Though after a while…it got uncomfortable….not sure if I’m still suffering from the VNG on Thursday, or just more of the vertigo that I’ve been suffering with since the NN Conference.

Along the way…I got super sleepy and lost track of time…. but after a bit of a rest, I forced myself out the door into the gloomy, rain to get some other stuff done.

Debating whether I’ll have supper (I hardly touched what I made yesterday and opted to crash….not sure I should bother trying to make anything…though so far all I have had today is some bacon and oatmeal….and a can of slimfast…)

What I do know is that I think I’ve reached my limit for pizza for an indeterminate future….knew the day would come. Hopefully I won’t tire of the peanut butter and raisin bread standby….

Not sure I’m going to try to be on a future support group call.

And, I haven’t been on any of my Facebook groups in several weeks…. Keep meaning to check my calendar to see when my next sleep doc appointment is….may just have to not wait and find another doc to see on my own.

The EDS is making me depressed.

I went to a Narcolepsy Network Conference in Las Vegas

I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.

This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....

What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)

I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.

From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.

So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....

At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year [2011], but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... :`( )

Pages: 1· 2· 3· 4· 5· 6· 7