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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Well, I'm home from another trip from the freezing north. Its a tad cold in my home too, good thing my flight from DFW to MHK was delayed, otherwise it would probably be colder.
When did I schedule the vacation hold on my thermostat? I was sure I had done it just before 8pm the night before I left....setting a 5 day hold, so that it would expire well before I got home. But, evidently it had gotten super cold in my home so it took a long time to recover. It was 62 when I got home, and it is try to get to 68......based on how much its gone up in about 45 minutes...I guess it has been working since around 8pm to get up from 50 (where I had set the hold at, I'll probably need to rethink the vacation hold bottom.)
Meanwhile, I found my missing smartphone. I didn't leave it plugged in...in the hallway like I thought I had. But, I had remembered to pick it up from there, but I had set it down when I had stopped to unplug my hot water pot....and forgot it there.
As for how the flight home went...leaving Calgary for DFW was uneventful. Going through customs was somewhat easier thanks to Global Entry, though I'm not sure why I don't also have Nexus....wonder what's involved in getting that added. Though the trip into Canada was relatively painless this time. Though I did get picked for secondary screening before security.... And, seems they subject ultrathin computers to secondary screening as well. The picked on the thin macbook product of a person ahead of me...and my chromebook, but they didn't test my thicker Lenovo laptop or other beasts that I recall for people around me. Though was kind of annoyed that Chromebook always turns on when you open it...a complete shutdown really should leave it off. It didn't seem happy about starting to turn itself back on from the complete shutdown, and then getting closed. But, airport security just wanted to swab the keyboard.
I knew that cherries before bedtime were good, in fact there was time where I tried to incorporate it into my bedtime routine...though dealing with the pits was kind of the pits Though I guess it doesn't work as a morning food then?
Surprised about bananas, since that's what I have in the morning.... Also a big surprise is Chicken, since that's what I'll usually have if not beef. Though it expands to say any protein, unless you include a carb to tip things back. Though now and then, I've been known to have a big steak or beef cut, and no carbs.... hard enough having a vegie and/or fruit with it. Especially now. But, Cereal isn't that big of a surprise, since I've been known to have a bowl of cereal when pressed for time to have supper before I go to sleep. Though that's a bowl of Cereal with Soy or Almond Milk, since I don't have milk in my home.
Interesting about Jasmine rice, I got a rice cooker over a year ago...but still haven't used it to make rice...just haven't had time to sit down with it and make a batch, and see how it all works, etc. And, how to fit it into my schedule. Hopefully it'll be safe despite the warnings the security company makes about heat generating appliances within the motion detection field. Since I totally forgot the hotpot is in the field and turns on automatically at 5pm. I think I have a few bags of jasmine rice somewhere too, along with basmati...the reason I decided to finally get a rice cooker. Plus I was getting bored of just minute rice.
Anyways...to read the whole article, click here.
An MSLT, Multiple Sleep Latency Test, is a nap study. It is used to see how quickly you fall asleep in quiet situations during the day.
The study is based on the idea that you should fall asleep in a shorter amount of time as your feeling of sleepiness increases. The MSLT charts your brain waves, heartbeat, records your eye and chin movements. The study also measures how quickly and how often you enter the rapid-eye-movement (REM) stage of sleep. Results of the nap study are routinely used to detect sleep disorders.
The study isolates you from outside factors that can affect your ability to fall asleep. These factors include such things as the following:
- Temperature (too hot or too cold)
Other factors that can still affect the results of the study include the following:
- Drugs and medications
- Amount of sleep prior to the study
The use of stimulants needs to be stopped for two weeks before the MSLT. Your sleep specialist should help you properly schedule the use of any other medications.
An MSLT is used to evaluate people who are thought to have narcolepsy. Most people with narcolepsy fall asleep in average of less than fire minutes during the test. Some take longer than five minutes to fall asleep. There are also people without narcolepsy who fall asleep in less than five minutes. The test also counts sleep-onset REM periods (SOREMPS). This is having REM sleep very soon after you fall asleep. REM sleep is normally the fifth and last stage of each sleep cycle. Having two or more SOREMPS in an MSLT is usually the indicator of narcolepsy.
An MSLT may be used to see if a person has idiopathic hypersomnia. These patients will fall asleep easily but do not have SOREMPS.
An MSLT will reveal a broad range of time in which it takes normal sleepers to fall asleep. Normal sleepers usually fall asleep in an average of about ten minutes during the five naps of the MSLT. Due to the wide range of normal times, the results alone are not enough to diagnose a sleep disorder. Doctors must also consider other data, tests, and medical information.
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 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 ) 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....