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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RIP: Peter Hsu - 1920-2013

Earlier this month, I took a little staycation (during which I did my "Narcolepsy: Not Alone" photo)...didn't get all the things that I wanted done, and watched even less TV than I do normally. During this time, I didn't check my 'work' email accounts (including the gmail account that I had associated with my work smartphone, which I haven't had one for a long time since I opted to downgrade to a basic prepaid phone on my own dime.)

When I returned to work on August 12 and started catching up on my email, I found a bunch of emails from my cousin June. My grandfather likely passed away due to sudden cardiac arrest Friday night (August 9th, 2013). He wasn't discovered until Saturday morning, slumped over in his walker, when my grandparent's helper showed up. He was 93 (June 12).

Guess there were other emails to my other gmail account (from my parents), but that account has become overrun by emails from places I've shopped and many discussion groups. Need to make more filters to clean things up.

Anyways, I was in shock. I was quite close to him, he's in many of my early childhood memories. Perhaps because he was the other tall person, we shared some common interests (namely photography and home stereo) growing up and he facilitated my growing interests and lead me in how passionate I am in those areas. Which has led me to being equally so in many of the other areas that I've gotten into both personally and professionally. I'll probably never have the a home stereo system like the system that drew my attention in Taiwan, Photography continues to be a part of my life despite it becoming harder and harder to do. It was how my tremor was making it difficult to enjoy my Photography hobby that had led to the diagnosis of Essential Tremor, not that it was making it hard to do precise mouse clicks at work. I've never really been a big GUI person....and as my Tremor progresses, its not likely to change....

While I hadn't seen him since 2010 when I visited him for his 90th birthday, which as it happened was also during an email move at work. In my mind there was that there ought to be a family reunion in 2015 for my grandparents 75th wedding anniversary (and 95th birthday), where we haven't had much of a family reunion since my aunt Clara had passed (in 2004). There was also the thought of a reunion in 2020 for his 100th birthday.

That makes 2000 our last family reunion (and my first cruise), which was for my grandparents' 60th wedding anniversary and my grandfather's 80th. We did try to have a reunion in 2005 (my third, and final :?:, cruise)...but no Leo, Cathy or Charissa...and my grandparents eventually backed out. They haven't been into air travel for some time, and we weren't able to find a cruise around Los Angeles. We settled on one started/ended in San Diego with arranged car service to transport them to and from the port. Still it was a good cruise, even though I was flying back to so that I could be laid off from my previous job on Christmas Eve.

Then some guilt crept in as I then became angry that I didn't know about his death sooner. Along with trying to figure out bereavement leave policies and whether I could get an airplane ticket, etc. to attend his funeral on August 20th. I managed to mostly keep it together and push through the rest of the day at work. When I finally got home, I was starving and much sadness came in bursts.

Eventually, I call my parents to find out what travel plans they had to give me an idea of what plans I should make for my trip. And, then it was to see about finding an airplane ticket....I had been combing sites earlier looking for tickets for other upcoming trips, like NN Conference in October and Chicago Tardis in November. Which I probably should pull the trigger on purchasing soon, but there's a staging of when I purchase such things to manage the hit on my credit cards....

After some playing around, I find a combination of flying in the morning of August 20th and flying back on the 21st for $440...with ATL being around $470 and ORD being around $415. But, its only for a specific flight out of MHK and a specific flight back to MHK. Moving to either side, practically doubles it.

Also, I had to leave the booking with no seats selected, because the only seats it says are available are preferred or extra room seats, so two levels of extra charges. So, I left it to see what it would do when it tickets, which isn't until the next morning. It has seat assignments for MHK to DFW and DFW to MHK, but neither of the LAX flights have seats.

Should probably get to buying ATL ticket soon (now), though was considering buying ORD first given the notes of only a few seats left at the lowest price.

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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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Narcolepsy Infographic

Narcolepsy Infographic: What is Narcolepsy?

Not everything that ails me is directly from my sleep disorders.

Meant to write this sooner, but wanted to do some research online on Costochondritis and Diclofenac....but never seem to remember when I had a free moment....

Anyways...somewhere about 7 month ago, I woke up one morning with severe lower right chest pain, and it made it difficult to sit up to get out of bed....ended up rolling out of bed. I figured it was a muscle injury....not sure what I did during the night to cause it.

Wearing a rib belt helped with the pain, so I used one on and off. Though as the frequency went up, I started wondering if there was something wrong with my CPAP/Sleep Apnea. Since, I recalled from last download that my AHI creeps up slowly during each sleep set, and get's much higher in the second sleep set than it did in the first. Usually reaching ~10 about an hour before I wake in the morning. So, perhaps the problem is indirectly from the management of my sleep disorders - AutoCPAP & Xyrem.

I wondered if my AutoCPAP was set too high. Since, I had come across my CPAP titration when I was re-reviewing my sleep studies to see if what they said at the NN Conference about a PSG could be sufficient to diagnose Narcolepsy. In fact found that the PSG said I might have it, but clinical correlation is needed. But, the doctors I have don't have time for that....they need objective tests with binary answers. Anyways...what I had found was the titration just tried 4, 5, 6, 7, 8....7's good enough use that. But, the upper limit of 15? I'm told its just a number that is generally safe enough. Plus the newer machines can tell if the apnea would respond to pressure or detect if the pressure is making things worse.

There are nights were I do hit 15, but its quite sparse and when I've been sick (AHI those nights can also get into the 20's).

But, it turned out to a major operation in getting the SmartLink software working again on my Windows XP VM. A while back after a Window patch it failed to boot, I was able to rollback and try again and again. Eventually removed some of the offending .Net packages, cleaned up and reinstalled and things were mostly working again. But, evidently I had left things bad for whatever the SmartLink software needed. So I ended up really removing all the .Net pieces...and reinstall the portions not used by SmartLink, letting the SmartLink installation install its version....

I had tried installing SmartLink on my Windows 7 VM, but that's on a FreeBSD host, so no USB2 support at the time. I have since picked up a Silex SX-DS-4000U2....

I finally was able to run some reports the morning before my next appointment with my Narcolepsy doctor. But, conclusion was that it didn't seem likely that my pain was directly being caused by things....though if it was a concern we could lower the upper limit (and raise my lower pressure again, with my 90% pressure 7.5 and 95% pressure 8.0. I had long ago raised my start pressure to 7.5 (when I was on just regular CPAP I had raised it to 7.5 until it was lowered back to 7 after the second PSG, because sleep lab can only do whole numbers....and sleep lab said I slept best on 8 :??: ) I had intended to get that done, but never got around to it. There was some discussion though on whether a new titration might be in my future, and the word BIPAP was dropped.

I hope that if BIPAP is necessary it happens sooner than later...since I'm considering getting another Intellipap AutoCPAP for when I get around to building my new go-bag. The old bag works great for my Respironics M-Series, but I don't really want to go back when next time comes.

Anyways...things continued....where it was a morning or two about every other week, or more. While looking to see if there were other things I could change related to my sleep. There'll be new pillows and bedding eventually...was going to start replacing things gradually, but seems I've decided to wait until all the items are here to replace everything at the same time. That could be interesting.

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