Tags: kansas

Narcolepsy: Not Alone -- Time to put Kansas on the map. #narcolepsynotalone

This has been kind of a strange weekend.... but it all started on Thursday, July 25th, when I got a Facebook invite from Julie Flygare to some "Narcolepsy: Not Alone" Event....

Reading the details about it...it seemed complicated, since I'm still alone....but I soon decided that I was going to do it and starting putting the plan into motion. And, I knew just the gadget to help make this possible....on July 28th, I remembered to go online to look for it. Fortunately, the first place I thought of had it...though sadly its no longer available: http://photojojo.com/store/awesomeness/collapsable-camera-extender/ (unless it comes back...)

Free shipping gave a range 10-15 days (Aug 7-12?), though in reality it didn't take that long...arriving on July 31st....just under 1.5 days in shipped to delivered.

I then worked on the other details of my plan. I was going to start with the provided sign with a small tweak....though the sign is centered, so I needed to move the text up a bit to make the tweak fit. I wanted to drop a safezone symbol onto it. Though finding a safezone graphic was harder than I thought, but eventually I found something. I used gimp to lay the images together and printed it out.

It looked good, though the "Narcolepsy: Not Alone" was kind of light. I figured I would just need to reprint it later using high quality mode on my inkjet printer. The next step was to figure out when I would actually take this picture.

Lawrence Chen -- Narcolepsy: Not Alone in Manhattan, KS

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Sleep Disorder Support Group at K-State?

Link: http://www.kstatecollegian.com/news/student-learns-to-juggle-disability-college-life-1.2210101

At some point after my diagnosis for Obstructive Sleep Apnea and my continuing problems that seemly too perfect CPAP compliance didn't solve, I wondered about the existence of a support group in town.

Eventually I found the AWAKE group, but that doesn't meet very often or regularly.

Then I started to wonder if there was or could be a support group at Kansas State University...not sure if that was before the word Narcolepsy was raised with me....

But, then the article linked above ran in the K-State Collegian...and in the comments to the article was the thought of a sleep disorder support group for K-State. So, I decided to send Megan Reynolds an email about the possible formation of such....along with a bit of my plight :)

The idea got tossed around, we talked about meeting, but neither happened before the end of the semester. And, I wasn't sure about bring it back up in the fall. But, things happened. I've been meeting people online, learning more and more about the subject, and then I was contacted via the NRG side of this site about whether there is a sleep disorder support group in the area. And, then that prompted me to bring it up again.

During the early exchange, Megan had said that she wanted to meet me....but I'm shy, so I avoided that part &#59;) But, yesterday I get a call...she's looking for me. And, I went ahead and said where my office is (co-workers commented that I shouldn't have done that :p ) But, we finally met. At least I'm pretty sure we did.

So, I finally made the trip over to Disability Support Services to make my interest known, and maybe further the possibility of the group happening. Perhaps something will come to be later this fall. Fingers crossed.

Not sure what the time frame is for me finding out why I still have most of the symptoms I had before CPAP, along with a bunch that I had forgotten that I had. That the seeming perfect resuls of being on CPAP....