Tags: cleveland

Sunday at 27th Narcolepsy Network Conference

Darn, I'm having trouble with balance today...but it always seems to take a couple of days to get my land legs back after any stretch of time on a ship. Though being some what tired might be adding to things.

Anyways...after getting up somewhere just after 7am, I quickly try to get out of my hotel room so I can make it down for 7:45am breakfast. A little late, but not a problem...there is only just a trickle of people at the start of the first line.

It was an adequate breakfast....probably shouldn't have had the eggs, not really a fan of the scrambled eggs, but just got a scoop out of routine. And, afterwards, I zipped up to the room to brush teeth and grab a few items I remembered that I was missing on the way down. The came down to catch the session of "Understanding Attention and Vigilance Issues in Narcolepsy". An interesting session, which now has me wondering about the strangeness in the field of vision test of my last eye exam. I can see things in the upper left quadrant just fine, but according to the test, I missed most of the targets in that quadrant during the test.

Though I wonder more about my perfect hearing test...I'm sure there's hearing loss, because I don't here everything (though maybe that's something else that's related)....but I was sure there were times where I made commission error responses. Its hard after a point telling which beeps are real or and which are ones my mind says happened. Though I'm sure I do it lots of times in other tests as well....especially if I'm really sleepy.

Next up was "Living Well with Narcolepsy", which I was interesting, though I'm having trouble remembering what it was that I found particularly useful at the time.

Then came the "I'm a Person with Narcolepsy and I'm Proud!" session by Julie Flygare...who finally had her moment to thank me in person for helping making it possible for her to run up Mt. Washington. And, then it was time for lunch....which was mostly wraps....which were mostly wrap, which really made a mess of my teeth, so I went back up to my room to floss and brush, but not before getting pulled into a group photo. As I was leaving I noticed people had desserts, wondered where that was....which I found later when I came back down. Wandered around a bit....and then went to the "Narcolepsy and Sleep Apnea" session. Which was interesting, though not very....it was more about the Narcolepsy followed by Sleep Apnea....though who knows maybe that's how the conditions developed in me...but I was diagnosed the other way around, which made for the journey being what it was. But, then again, nobody seemed particularly concerned about the sleepiness all the time, or the weakness events, or the sleep attacks. And, I guess the insomnia went away when the apnea got bad enough that I had a huge sleep debt.

Where later the insomnia came back after sleep debt was repaid on CPAP....but it didn't really solve the daytime issues. Though the key triggering factor was reaching Hypertension Stage 1. Which the CPAP did help with.

Anyways...after that I wandered off wondering what the "Open Space Technology" session was about, but none of the topics really interested me...."Narcolepsy and Aging", "Narcolepsy and Migraines" and "Narcolepsy and OCD" were basically the topics, so I went off to catch up on socializing....until the final session of "Strategies & Techniques to help the Doctor help you"....which may not be help the doctor, but rather a how to work the system to get what you need out of your doctor, or how the doctor works so how to most efficiently work around that....

And, then closing ceremony this year, which was move to the Amphitheater to watch the finished Narc-umentary. Unfortunately the music track and the voice track were inverted, so couldn't hear the dialog except when it was loud or the music was quiet. Hopefully the finished version will appear in some form somewhere, it seemed really interesting. Noticed that there seemed to be quite the transformation in some of the people between when they first showed up at the start of the conference to seeing them in the video or at the end of the conference. Of course, I was a different person between the beginning and the end of my first conference.

And, then fell into a group and got supper at the Winking Lizard and then went to the "secret" room for conversation until it was sufficient late (but not really) and broke off to go to sleep. I could probably have continued on later, at least I felt like I could...but as I was walking down the hall to my room, I could feel that I might have got a little further than I should've. Or waited until the second wind....

Wonder what I'll get into on my extra day before flying home....

Getting settled in Cleveland - Narcolepsy Network Conference

Well, sitting around in the airport terminal was dull, though I then remembered I had my Kindle to catch up some reading.

Soon, I was getting notifications that the 5:05pm flight to DFW was going to be delayed as well. But, 5:35pm seemed to stay....in fact, while waiting in security it was upgraded to 5:30pm. And, the wind seemed to cut 15 minutes off of our flight time. So, there was ample time to make my connection for Cleveland.

During the flight from MHK and DFW....I took a 30 minute take off nap, and then was awake for the rest of the flight, reading and re-reading the inflight magazine and skymall catalog.

Looked like that would be an on-time, until we were informed that there were two passengers still making their way through the terminals that we were waiting for. So ended up leaving 15 minutes late.

But, we went....on the flight I got a gingerale and a bag of spiced nuts. Guess that'll be it for today. I arrive at the airport, and after what seemed like an eternity....my bag appeared. And, then it was where's my transportation. I wander back and forth a few times, check information, told I probably have to call them....though they might be hard to get a hold of at this time. But, I had called ahead about the time change....and it was only about 20 minutes later than I had said. Well, the touchscreen doesn't have them, person says guess they got removed. Maybe there's a brochure somewhere. Same number...still no answer. Well, I guess I'll have to find my own way to the hotel.

Could hire a towncar, $40...cash only. Or taxi $35, will take credit card. So I go for taxi. Except that the cab starter sets me up with a taxi driver that isn't an airport taxi and therefor doesn't take credit cards. So, I did up some cash...and pay the $35 even.

Then to get settled in the room....there's a lot of work....and there's no vending machines in this hotel. Just the mini bar...can't tell what they want for cheap old bottled water. Its all wired, so if I pulled the wrong thing...I'd get charged. Looks like just fancy waters...starting at $4 a bottle and up. Check at the front desk....there's vending machines at the ER, or there is an Au Bon Pain up and over by skyway that's closer and open 24/7. So, I get a $1.75 bottle of water....

I mix it up with a Crystal Lite To Go packet (Appletini....and mix up my Xyrem) Though I end up drinking the rest of it after washing down my pills for the night. Guess I'm a little bit thirsty. Guess I'll be needing more later.

Was shooting to get to bed by 2am...but looks like it'll be more like 2:30...so that means my day won't start until 10:30? Oh well. Such is life. Thought I had packed more charging cables....and thought I had packed a full fountain pen, though doesn't look like it leaked. Guess we'll see when I update my sleep journal in the morning.

But now to shower and sleep.....

Flying to 27th Annual Narcolepsy Network Conference...maybe

Well, I was hoping to get in with time to get some supper and a good night's rest before the conference.

But, seems everything is going wrong today.

The wake up and get ready for ride to airport wasn't too bad....in fact I was ready to go before 9am, though I had delayed the scheduled pick up to 9:30am...because they estimated time is a lot shorter than I'm used to, and they hit it quite well when I rode on October 2nd.

Finally about 9:20, I went out...remembering that they're more than punctual on pickup, they are there a bit before hand. And, sure enough a Black Car was waiting already.

But, it took a little longer than estimated to get to the airport, though still reasonable. The delay was due to different K-18 construction blocking the entrance to the airport, requiring a detour to get there.

Checking my bag and getting my boarding passes wasn't too bad, though going through security was a different. When I first started flying with CPAP, it was take it out for them to x-ray and swab. Then a couple years ago, they didn't care anymore. And, I didn't need to take it out. But, now they want it out and checked again.

Though no problems with Xyrem. That first time through.

After getting settled to wait for boarding, the PA came on to say that our plane got diverted to Tulsa, OK due to high winds...an advisory which is in affect until 7pm, i found out later. They don't know when the plane will make it in, so everybody needs to leave the security area, and check on their connections, etc.

After a lot of standing, I find that my DFW to CLE flight has been rebooked to 7:45pm...arriving 11:15pm in CLE....so I'll be lucky if I hit the hotel by midnight, etc. Guess I'm going to sleep in on Friday morning and for go the Rock & Roll Hall Fame tour....

Guess second time through security should go smoother :)

And, I guess I can get use of the Admiral's Club to pass the time in DFW.

Darn....now they've officially cancelled my flight to DFW. Well, the agent said he would hold me a spot on the next flight, so hopefully he'll make that happen.

So maybe no Admiral's Club now....but still hopefully make it into Cleveland tonight.