Tags: narcolepsy network conference
While, I was passing the time on the journey home, I was catching up on #nnden14 tweets. One of which was this one:
— Kimberly Ratliff (@kimberlyratliff) October 18, 2014
To which I first wrote this as as response….
— Lawrence Chen (@LawrenceChen) October 20, 2014
But, discovered that my second response never left my phone….which was:
@kimberlyratliff Or better yet, I wonder if the people working on the Orexin Antagonist for Insomnia, might lead to it being a treatment for Alzheimer’s dementia patients?
Traveling to this year’s conference seemed to be more challenging that previous years. Not sure if it has been the steady increase of entropy and the proliferation of piles. Or the added joys of my Ataxia.
So, way back in May, when I was trying to decide on what nights to book at hotel….I was looking at what kind of flight itineraries there were available….since it affects whether I would want to fly in the day of the conference (or more likely the day before the conference…to at least start it off with one good night of sleep ) And, whether I would be looking to fly out the day after or stay an extra day of nothing. Had done the latter for the 2012 Conference. It was kind of boring that extra day, though it was nice than when I had exceeded my sleep debt and had slept through my alarm after the 2013 Conference (meaning no hotel breakfast before trip home )
What I found was that flying out Wednesday was substantially cheaper than Thursday….more than enough to justify the extra night at hotel, etc. I should probably have taken Monday off….I should also probably have started packing at least during the weekend before. Instead I left it to Tuesday…and didn’t really start until after 6pm. (with a 2 hour break to whip up supper and sleep, after a little too much time playing “Doctor Who: Legacy"…)
The mistake I made on Monday was starting a new project and feeling compelled to see if it worked Tuesday morning, and spending too much of it figure out why it didn’t. Its actually a small sub-project where the larger project isn’t yet fully working….and has been going on for months already. So progress or not, its still going to be there when I get home. There was also an extra accumulation of trash that I needed to clear out before I could start packing. Like the giant box my new suitcase had come in…back in July, which I was just opening now. Took a while to figure out how to open/close it, etc. Turns out that its not really practical for the kind of packer/traveler that I am. Though probably will just put up with it for a year or so.
Also, I knew that I needed to do one load of laundry for the trip, which didn’t get started until about 5pm. Ended up cramming lots of other items, especially after I discovered that my NNA shirt at the bottom of my hamper pile (I have hamper, but there’s a pile next to it too now.)
Anyways….I had found this great itinerary… Leave home at 10am…. have 3 hours between flights in Dallas, so that I can spend some time at the Centurion Lounge….like grab a quick bite, pop some pills, and maybe even get in a massage. But, then in late august I get a notification that the airline has changed my plans….its down to a 2 hour gap between flights….I had booked Supershuttle way back when I had done Hotel and Airplane…. so debated whether I needed to adjust my reservation.
The plan for returning, would have me leaving the hotel at 10am and getting home while the sun is still shining.
Then a couple weeks later I got another notification of changes to my schedule. They moved up when I needed to leave my #NNFamily…. who I wish I never had too. Much earlier….now I’d have to leave the hotel at 7:30am. Which is bad because for some reason after Labor day…I had stopped only managing to get 5.5-6 hours of sleep each night….so getting 8-9 hours a night. So, I was back to 7:30am being my normalish wake up time. Because of this change, I had contacted Supershuttle to revise my entire reservation which resulted in a 7:30am pickup time. (a bit longer time window than the original, but suspected traffic might be a more of a problem at that time…) It didn’t seem to really affect airport to hotel scheduling….its still when I’m done at baggage claim visit their counter, etc.
In fact, Monday night I had overslept my first dose by 2.5 hours, so opted to not take my second dose and just sleep for about another hour. Perhaps the problem, was that I had been putting off replacing the nasal pillows on my mask ’til after the conference and had finally caved to replacing that night…. Though delaying making a new mouthpiece, since I just had a dental cleaning on Monday, and my bite tends to be off for a few days afterwards….
During #nchat, I mentioned how annoying it was of the airline to have done this to me. Which led to chatting with the airline via Twitter, and they offered (and I accepted) a change to my return flight. Now I don’t have to leave on Monday until 12:30pm…..while I get home at night, its not the last flight of the day (so less worry that the building closes and they kick me out of the building before a taxi materializes…happened to me coming home from Galifrey last February.) It would have me coming back via Chicago….and give me about 35 minutes to make my connection.
I guess I can live with that. Though probably won’t try to see if I can schedule my next Xyrem shipment for the next morning (Oct 21st…last shipment was on Sep 24th.) Speaking of Xyrem…for some reason they been starting to call me around the 14th to try to schedule it…wonder if they’re going to try calling me during my conference window to schedule it.
I was able to get a reservation this year for Black Car to transport me to and from airport. So much nicer coming come from a trip, especially last at night when you have argue the taxi driver that really do want him to come out the airport to pick you up. And, that he’s not coming out there for nothing. Well, if an hour goes by and you still don’t show up and its below freezing and they’ve closed the airport and kicked out into the cold 45 minutes ago….then its because I called a different cab company who eventually came and got me about 30 minutes after that. Instead, Black Car is waiting for you at the airport (sometimes even with a sign.)
Eventually, at about 11pm, I decided I’ve had enough with packing….either I have it or I don’t. And, there’s still a little bit more that I’ll need to do the next morning anyways, when I pack up my CPAP bag. Though as I get ready for bed, I check out Facebook quickly, and end up printing off boarding passes, etc, and retrieve other items from my printer that I had printed for the trip. And, later on as I’m getting ready for bed, I dig out some newsletters/magazines that I had set aside to have something to read should I find some free time during travel or before conference… Stack those on suitcase as I’m not sure if there’s any room left.
Not sure if there’s a raffle this year, but most of what I had set aside for that this year…ended up not making it.
Wednesday, October 15th….9:58am….I’m moving bags out the door, so I can make a quick escape after arming my security system….when the phone rings, though it was just one of my daily telemarketing/charity calls (not sure which, but Google voice has flagged them as spam so they get shunted to voicemail…and no message is ever left….except an occasional one of some background typing….) Though later when I’m in Dallas, I see that among my missed calls was SDS. But, first I have to get to Dallas.
IIRC, there had been a slight tweak to the flight from MHK to DFW….But, Black Car has been so wonderful that there’s no worries about getting there by the cutoff for check-ins. Have had cab reservations, where the driver has to stop and get gas along the way…. (though partly because they lost my reservation…and I had called them, forcing them to find rush somebody over who wasn’t told that I wanted to go to the airport….or something.)
So, I’m sitting at the waiting area waiting for security to open…flight was scheduled for 11:30, and boarding time was to be 11am. There was guy across from me that was already sleeping when I sat down. He wakes around 11am, wondering why security hasn’t opened yet. I’m it a bit of a fog, but I’m pretty sure I hadn’t dozed off….but how can I really tell…. Occurs to me that I get flight notifications to my other phone (since I had switched it after forgetting my usual phone one trip.) Find there are 3 unread texts. The first is the flight is on time and details. Second its been delayed about 20 minutes. Third its been delayed another 20 minutes.
Security opens shortly afterwards…probably sensing that we’re getting restless now, though the guy across from me had just laid back down for more sleep. I rush, because I have feeling like they’re going to be a hassle to clear, even though I’m TSApref. At this airport it just means that I can keep my belt and shoes on, and optionally a light jacket….if I hadn’t crammed the pockets full for all the stuff from my pockets.
No belt this trip…had opted to go casual.
They’re running my bag through xray…hear that they want to run it again the other way. Overhear person at xray machine saying I think that looks like a camera…. the other guy (after getting permission) starts going through my bag….pulls out my Tamrac 5682 camera bag….guess that wasn’t enough of a give away….opens that and takes out camera….yup, its a camera. Then gives it to me to put everything back in its place….restore the spot where I stuff the Ziploc with my Xyrem bottle.
And, then we wait for the our plane to arrive, and for boarding to start. At least they still did some groups….they start with the usual diamond, platinum, priority access, people with children, uniformed military, but then include group one to board first. That’s me.
I always get group 1, because its an Embraer…and I need to find a spot in the limited overhead space for my CPAP bag.
And, then apparently some delay in take off….while I manage to stay awake for it, and go through the American Way magazine…then start into the Skymall catalog, but after a couple of pages, sleep wins and I wake a bit before plane begins descent.
Hmmm, boarding time to my next flight is about 30 minutes away….we’re to be at B2 and I need to get to C10….will I make it? But, we arrive and the pilot announces we’re going to be at B1, except there’s a plane in it and we’re waiting for it. Though neighboring gates are empty??? Eventually we get there….I down to just 10 minutes to get to next flight. Somebody behind me is grumbling that she only has 5 minutes.
I start in hunt of escalator to skytrain, when I pass walkway to terminal C. Decided that the time to go up and down and wait, etc. Might be faster to walk it….well, it might have been if all the moving sidewalks were working. Only the first 2 of 5(?) were… End, up arriving at gate just a little after the start….still doing priority lane, so not much longer before Group 1 is called and I can see about finding my seat.
That flight goes pretty smoothly…I stay awake to finish off the Skymall catalog, and then dig out something to read…a “Generations” newsletter (my first issue since joining NAF, following my recent new diagnosis…) And, its a special one…. Learn that the latest new problem that has been bugging me, might be part of my Ataxia progression…and is mentioned as something that leads to increased risk of falls later on, as it impairs our ability to compensate as well as we have been.
Also came across a research summary of “Modifying Machado-Joseph Disease Progression by Caffeine Blockage of Adenosine A2A Receptors". It starts with “MJD was originally described in people of Portuguese descent and it presently considered the most common dominantly-inherited cerebellar ataxia world-wide. Where apparently “chronic consumption of caffeine…alleviated neuropathological modifications and motor behaviour impairments.”
Hmm, wonder if that’s why my symptoms got worse….following the constant consumption of caffeine. Had at one point largely been completely caffeine free, except for chocolate. I had eventually gone back to enjoying a cup of coffee in the morning, or having a Dr. Pepper or Mountain Dew with Lunch….though still way less than I was before I had decided to try eliminating it.
Being Caffeine free did seem to help when I was on Ritalin as my daytime stimulant….but as I built tolerance the doc only wanted to increase the same dose times, not change timing to try to smooth things out….I switched to Nuvigil (was on Provigil before Ritalin, and had wanted Nuvigil then because paying 65% of its cost is about half of paying 35% for Provigil….this was before Provigil went generic, and Nuvigil got reclassified as a specialty drug…capped to $75/month.)
Not sure if I can train myself to drink more coffee though….sometimes I don’t finish the one cup I make in the morning….or notice until the next day.
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So…on the last day of the Narcolepsy Network Conference in Las Vegas, I met Lily…and she mentioned this Narcolepsy Support Group that meets by telephone. That I should google for it and check it out…
I kind of forgot about it for a while after I got back from the conference, but then finally went looking for it. Its only a monthly call, and its on the first Saturday of the month….so I missed the first one after the conference.
Today…has been a lazy, gloomy sort of day…and I wouldn’t mind sleeping the whole weekend away to maybe ‘catch-up’. Except that this support group thing had registered in my mind, and I was going to try to make at least this one.
So, I forced myself out of bed…and decided that I should force myself to shower and dress, so that maybe after the call…I would accomplish some other things. Like its been a few weeks since I’ve done groceries…or visited my mailbox at the UPS store (which as expected was packed full of catalogs…but the two amazon.com orders that I had sent there were also there, so at least that was good.) And, as it turned out Flint Hills Breadbasket was collecting donations at the grocery store, so I bought a bag of groceries to give away.
Meanwhile…getting onto the call wasn’t that that great.
I’d call, enter the conference code and be told its invalid…try again, still invalid. And, then have to try calling again. No idea why the code was invalid…just that it was. So, I kept trying. I started about 10 minutes before the start…but didn’t finally get in until about 15 minutes after the start…just as I was about to give up.
Somewhere in the process, it then started repeating back what it thought I had entered….some or all of the digits were being doubled. Why? I suppose I should’ve used my cordless phone…though I haven’t gotten around to putting new batteries in it yet, so it probably wouldn’t have lasted. So, I tried something else to make the call….I was in, but it wasn’t great. And, apparently it was really bad if I tried to be heard. I did hear of other people commenting about what they were on to be on the call as not being good as well.
But, things got a little better after I found a headset to use. Though after a while…it got uncomfortable….not sure if I’m still suffering from the VNG on Thursday, or just more of the vertigo that I’ve been suffering with since the NN Conference.
Along the way…I got super sleepy and lost track of time…. but after a bit of a rest, I forced myself out the door into the gloomy, rain to get some other stuff done.
Debating whether I’ll have supper (I hardly touched what I made yesterday and opted to crash….not sure I should bother trying to make anything…though so far all I have had today is some bacon and oatmeal….and a can of slimfast…)
What I do know is that I think I’ve reached my limit for pizza for an indeterminate future….knew the day would come. Hopefully I won’t tire of the peanut butter and raisin bread standby….
Not sure I’m going to try to be on a future support group call.
And, I haven’t been on any of my Facebook groups in several weeks…. Keep meaning to check my calendar to see when my next sleep doc appointment is….may just have to not wait and find another doc to see on my own.
The EDS is making me depressed.