Tags: tumblr

The Dreamer Claims A(nother?) Victim!

Link: http://remrunner.blogspot.com/2012/04/legs-on-fire-starting-my-training-for.html

What did Julie Flygare do to deserve this? I have no idea....

She ran the Boston Marathon in 2010 for Wake Up Narcolepsy....before I knew who she was and what Narcolepsy is. But, somebody had apparently told her to be on the look out for me at the Narcolepsy Network Conference in Crystal City, Arlington, VA.... but I didn't really learn much about her until I started following her blog and other online presence after that conference.

I learned a lot at the conference, and continued to learn after the conference...including lots of stuff about myself. I'm still a work in progress. (idiopathic hypersomnia, hypnagogia, hypnic jerk, sleep paralysis, automatic behavior, long sleep, etc.)

But, back to Julie.... because I was stalking her online.... about a week and half ago, this post from a few days earlier caught my eye:

In My Father's Footsteps: Trying to Find Registration for Mt Washington Road Race to run in my father's honor on Father's Day for charity

So, I did a little research of my own.... and then wrote this blog entry on my Tumblr site: REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 -- In memory of her father and to raise money for Narcolepsy Awareness and Research.

I have my Tumblr site set to tweet my posts.

Using the APA Style

LawrenceChen. (2012, Mar 25). REM Runner wants to run The Northeast Delta Dental Mount Washington Road Race 2012 - In memory of her father... http://tmblr.co/ZmWZfwIYfD1N [Twitter post.] Retrieved from https://twitter.com/#!/LawrenceChen/status/183999798339313665

Which surprisingly lead to this tweet:

NortheastDelta. (2012, Mar 27). @LawrenceChen Tom Raffio the CEO of @NortheastDelta will be contacting soon. :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184740188797419520

And

NortheastDelta. (2012, Mar 27). @LawrenceChen - for clarification - we are contacting Julie re the Mount Washington Road Race :) [Twitter post.] Retrieved from https://twitter.com/#!/NortheastDelta/status/184745755431550976

Concluding with

RemRunner. (2012, Mar 27). @NortheastDelta @LawrenceChen Thank you so much! REM Runnning up a mountain for my dad would be the honor of a lifetime! [Twitter post.] Retrieved from https://twitter.com/#!/RemRunner/status/184749224636850177

And, then it seemed like an eternity passed before I heard anything further...until I spotted her "Legs on Fire" post this morning.... Guess that means my next project is to get her published &#59;D

Full story »

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.