Tags: length to diagnosis

Narcolepsy Network Conference 2013 in parts ... 1

So, I didn’t write entries during the course of this year’s Narcolepsy Network conference, in fact I spent very little time online during the conference. I didn’t get my laptop out at all during it, and as I later discovered most of the comments I did from my phone to facebook didn’t post…so just the occasional tweet and 4sq check in (which I’m really out of habit of using, so I’ll probably stop again, even though have a more usable phone again.)

Now that I’m back from the conference, I’ve been trying to decide where I should begin….so let’s try the beginning…

I really left getting ready for the conference this year, right close to the last moment. I had been smartphone free for a couple of weeks, angry that T-Mobile was holding my hostage to a contract on a phone when they had switched to no more contracts. So, in the end I got a new phone from AT&T. It arrived on October 9th, and I started activation on October 10th. And, then spent the weekend figuring it out and getting it to something I wanted, instead of packing for the NN Conference which I had intended to start by October 13th instead of on October 16th in the hours before my journey was to start on October 17th.

I also ran into a problem with my plans….I normally get a buzz cut every 5 weeks, but that would put my usual buzz cut in the middle of the conference, so I planned to do this on October 12th. But, when I got the hair cutters, they wouldn’t cut my hair. Fear of what is probably seborrheic dermatitis, though perhaps I should get a specialist to look and see if that’s what it really is, etc. I don’t recall checking my pillow that morning to see if there had been any fresh blood or pus, but they said there was signs of recent bleeding so they wouldn’t touch it. Though I didn’t see any blood on my pillow most mornings during the conference (I don’t recall checking the morning of my return, but I was kind of rushed that morning….for nothing.)

So, I opted to cut my own hair on the 13th. Years ago I had purchased a Remington Short Cut Clipper….so I finally put it to use. I soon remembered all the problems I had back when I used to self cut. I lack the necessary coordination to use both hands…so its a bit awkward getting things even using on my right. And, there’s no mirrors in my tub (since I do that to simplify clean up…) and, its hard to do the finer details….even though I had supported the Edgup project on Kickstarter. I had neglected to plug in my regular clipper. Though I did plug it in for a bit…. since I discovered that I had pretty much missed cutting the hair around my left ear.

I then worked Monday and Tuesday, and kept saying that I should pack in the evenings rather than try to not fall more behind on my TV watching. But, I caught the occasional show here and there. Monday I had gotten home late, and after too much procrastination, I ended up just having a big bowl of cereal for supper. Tuesday things got later than I had intended as well, but I ordered from Dominos for supper and lunch and supper on Wednesday. So, I watched some TV while eating….

At least I had gotten in some laundry during the weekend, with an eye to have specific items for the conference to wear. It had cooled down quite in bit in the week before the conference, so I opted to wear pants and shoes, instead of shorts and birkenstocks (though I wore the birkenstocks for most of the conference…even when I did venture out of the hotel…) There were various items that I couldn’t locate as I was rushing to pack, and I was aiming to be in bed by 7pm (with a target wake time of 3am, to do final preparation before 5:30am Black Car to Manhattan Airport.)

I had a strong suspicion that I was now back to the waist size that I was at before the sudden weight gains that eventually led to diagnosis…where 3 events had pushed into overweight. And, it appears to have been confirmed as I found the pants I had available are on the bit too large side…. During the expanding phase, I never thought I could get back to my old size, so I had gotten rid of those reminders….now I should probably clear out the clutter by getting rid of all the clothing that is now too big for me.

Eventually, I got where I felt I was sufficient packed….though I had probably eaten lunch and then supper a bit later than I should’ve. I finally got to bed after 7:30pm, closer to 8pm. I set my alarms for 11pm and 3am.

I woke to the 11pm alarm, and after some puzzlement I took my next dose and went back to sleep. I then woke on my own, where things felt strange so I checked my alarm….it was a little after 3:30am. ARGH! :##

So, I rushed around taking care of the final packing…which was mainly to pack my CPAP mask into my CPAP bag. Due to the nature of my mask, it is the one item that isn’t duplicated in my CPAP bag. I then continued to get ready and then spent some time on facebook while waiting for 5:30am to approach. About an hour. Finally at about 5;25am I set my bags outside, briefly closed the door so I could arm my security system and then headed on out into the cold. It was about 36F, and it was expected to get colder still before the sun would show up to reverse things.

After that…things went pretty well with the flights, though the departure gate in Chicago changed 3 times and there was a bit of a delay in getting out, largely due to the weather there (though there was also weather in Atlanta.) I didn’t see anybody I knew at the airport, so after some thought I opted to take a taxi from the airport to the hotel. It was a flat $40 + $2 fuel surcharge and $1.5 airport surcharge. And, I didn’t have trouble staying awake during the ride.

Of course, I had slept through virtually all of the flight from Manhattan, KS to Chicago. And, slept during taxiing and take off from Chicago bound for Atlanta. Though I was awake for the rest of the trip and passed the time by reading the in flight magazine and finishing the kindle book that I had started reading during my trip to and from UNMC.

I arrived at the hotel about 2:15pm, and went up to my room and after some thought, decided to unpack and fully setup my CPAP before going down to find lunch.

Unfortunately the hotel restaurant’s lunch service closes at 2:30pm. So, wandered around a bit inside the hotel to see what alternatives there were, I then looked at my phone to see what was nearby, and settled on walking to Lenox mall in search of food. I decided to go with the familiar and had lunch at Panera Bread. Then I walked back….where it started to rain much heavier. But, still acceptable. Though I had lost my bearings while wandering inside the mall, which apparently is much larger than it appeared on the outside….since there’s two stories that I saw when I entered, and two more going down…. Would’ve been interesting to explore the area more.

I eventually wandered passed the Marta station again, where somebody asked me which was some address along Peacetree. Not having paid any attention to building numbers, I wasn’t sure….but I ended passing the address he had been looking for before getting back to the hotel. I considered doubling back, but by now the rain was starting to pick up.

Later I would see other people that had gone out for walks that were caught by the rain worse than I had.

I largely continued to pass the time sitting in the lobby? area waving to familiar faces and hanging out and chatting with other new and old friends. This eventually led to having supper with at Southern Art, and then more socializing before calling it an early night.

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