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.
For the last few years, I've launched a campaign to raise money for a choosen cause the month of my birthday. Using the Causes application on Faceobook. Until recently it has been for Breast Cancer Research. But, last year I switch to Narcolepsy. And, now it seems the Causes application has falling into disfavor, so few charities will accept donations through it.
But, this being a special year for me....the year I finally received a diagnosis of Narcolepsy and started treatments to better manage this condition. So, I did a search online, and found another site that can be used for this purpose....and created my 44 (donations of) $44 for my 44th birthday. That means the goal is to raise (at least) $1936 for Narcolepsy Network in the month before my birthday. And, the rush to implement my apnarcoplexic.com website.
It has been a long journey, from where I didn't know there could possibly be something wrong with my sleep that explains why I have all these problems during the daytime. To feeling relief when I was first diagnosed with Sleep Apnea. To learning about all sorts of sleep disorders. To becoming annoyed with "Good news! The test result is negative! We still don't know what's wrong with you and that's good." Not.
To where it seemed that I would be stuck with Idiopathic Hypersomnia (You're sleepy all the time and we don't know why.) I however, I've been told by a few people that I exhibit signs of mild cataplexy. But, that and some of my other symptoms, such as sleep paralysis and hypnagogic hallucinations, got me crazy or depressed again. That's why I wasn't going to tell my doctor that I've been having those sleep events for years. The enhanced ability to lucid dream can be kind of nice at times.
So, on May 10th, 2012, I overshot my walk home from work by landing in the ER where I was later diagnosed (on May 15th) as having had a Cataplexy attack. To most people that would automatically mean Narcolepsy... since its really rare for to have Cataplexy without Narcolepsy. But, my current PCP and Sleep Doctor weren't ready to make the diagnosis of Narcolepsy. PCP didn't want to prescribe Xyrem which is for Narcolepsy patients (with or without Cataplexy). And, Sleep Doctor didn't seem to want to make a clinical diagnosis (Diagnosis based on a study of the signs and symptoms of a disease.) So, my revised diagnosis became "Sleep Apnea and Idiopathic Hypersomnia with Cataplexy". Or, "Sleep Apnea, Depression, and Cataplexy". Where the objective diagnosis of Depression was made by using the Becks Inventory and score more than 15. While I didn't feel sad, suicidal, worthless, etc. I did score points in areas like Fatigue, Insomnia, Diminished Concentration, Loss of Energy, Worrying about my Health...all things that I would expect to score in given my current untreated and ignored state.
To this end, I was first tested on Remeron....not sure which was worse the constant flu like pain or that I gained like 50lbs. Then Celexa...which wasn't that bad in that it didn't do anything. And, then Prozac, because it could help with Cataplexy. Though I later heard that it can also make Cataplexy worse. Which it did in my case. And, when I reported this, it just made the doctor what to increase it and increase it, so I can be even worse.
Then in June the AWAKEN report came out -- Mentioned Here
And, that didn't make me feel any better...despite it explaining why I was still in this rut. Finally, I decided it was time to see a psychiatrist again. In the mid-90's, I was prescribed Serzone by my family doctor and after a long process (including where my doctor threatened a forced commitment for asking to stop taking the poison) saw a psychiatrist would said I didn't need it and ended that. A few years later Serzone was withdrawn from market for Hepatotoxicity. I was contacted about joining class action suits, but by then I had moved on.
At first I had visits where a psychiatrist told me that if I had walked in off the street, he would not have diagnosed me with depression. But, since my sleep doctor had made the diagnosis and was convinced that its what's causing my continued problems. I would stop taking the antidepressant that isn't working and later try another popular one. Well, I do own stock in company that makes that one, and it has risen quite nicely in value, though it was acquired by another company which doesn't issue dividends anymore. Though I did come across the tidbit that they are the company in Canada that distributes Xyrem.
Eventually I saw another psychiatrist would reviewed my previous MSLT and other notes and said they support a diagnosis of Narcolepsy. (my current sleep doctor had also said the MSLT would support a Narcolepsy diagnosis, but then had me spinal tapped to exclude the diagnosis.)
The spinal tap is a research study, where they've determined that if you have low or no Hypocretin then you are 99+% to have Narcolepsy with Cataplexy. But, if you have Narcolepsy with full Cataplexy, only 88.5% are of the low or no Hypocretin variety. This is based on the Narcoleptic dogs lacking the receptors for Hypocretins. But, there really isn't really a safe way to scientifically test for the lack of the receptors in live subjects. Others have reported that in expanding the test to all kinds of Cataplexy and those without Cataplexy...the test is ineffective or about 50-50.
Both my previous and current psychiatrist have said that Narcolepsy is largely diagnosed on a clinical basis. And, my current psychiatrist gave me the, "If it looks like a Duck, If it quacks like a Duck, Then is is mostly likely a Duck called Narcolepsy" on July 12, 2012. We talked a bit about the MSLT results and what meds I was on and that none of them were discontinued in advance of the test... there was a study somewhere noting that NE uptake inhibitors (such as Modafinil) would potently reduce REM sleep (in Narcoleptic dogs.) And, then it was some words about Xyrem.
I started Xyrem on July 26th, 2012.
Having personally experience the lack of awareness in Narcolepsy on all fronts, it is my wish to get raise money for Narcolepsy Network who is committed to raising awareness and promoting early identification and diagnosis of this sleep disorder. And, is seeking in the coming year to expand these efforts. They want to reach more health professionals and also teachers, who are often the first to notice the recurring pattern of unusual sleepiness in children and young adults.
"When narcolepsy is recognized and treated early, there is every hope and expectation for a full, productive and healthy life."
Recently, godaddy suffered an out that disrupted numerous websites, including most of my sites. As an apology they offered a discount on renewals and purchasing of new services from them.
I contemplated extending a number of my domains, a few of which set to expire in the coming year. Though some of which I had intended to eventually have go away to make way for the replacement sites that I have been working on, or plan to work on. apnarcoplexic.com is one of those sites I've been thinking of working on.
Having figured out multidomain setup of b2evolution, with the construction of TheChens.WS
Having mastered multidomain setup of b2evolution, I decided that it would be easier to some day consolidate my multiple instances of b2evolution into this single instance. The other instance being one for Sleep Apnea and another for Narcolepsy. I found myself typing strange mashes of "sleep apnea narcolepsy cataplexy" trying to come up with a suitable domain name. I had initially thought of getting Narcoplexy, but realized that was too close to Narcaplexy, a blog that gave me the idea for what I might call this new blog. And, I didn't feel that narcoplexic was different enough. After numerous iterations, that were getting to be too long or too short, I settled on apnarcoplexic...since apnarcoplexy would still be too close to what I had started with. And, the previous apnearcoplexy idea, I felt put too much on apnea and not enough on narcolepsy/cataplexy.
So, the idea for building this site is born....the question then becomes on whether I'll launch the site before the upcoming Narcolepsy Network conference or after. So many projects to try to deal with now that I'm awake more.
I was in Las Vegas, NV for the 26th Annual Patient Narcolepsy Network Conference from October 13-16, 2011 at the Stratosphere.
This is my second Narcolepsy Network conference. My first was the 25th Annual one in Arlington, VA (actually the Hyatt in Crystal City, VA)....
What led me to my first NN Conference was kind of strange. In early 2010, I first heard the N word raised in relation to my continuing EDS problem after successful/compliant management of my Sleep Apnea using CPAP (AHI was less than 1.0....closer to 0.0. In fact it was 0.0 in a PSG I had in December 2010, so sleep doc lowered my pressure so that its around 1.5 now.)
I honestly didn't really know a whole lot about Narcolepsy then, so I started researching it online. Since, I was a regular on the TalkAboutSleep message boards, and attended the Sleep Apnea chats regularly too....I started showing up to the Narcolepsy/Idiopathic Hypersomnia/Fibro chats as well.
From the chats, I feel like I've gotten to know Tracy and some of the other moderators. And, Tracy suggested a few times in chats that I check out Narcolepsy Network and its upcoming conference. With the implication that we would finally get to meet face to face if I went to the 25th one.
So, that's why I joined Narcolepsy Network and then went to the 25th Conference in 2010. Somewhere after I was committed to going, namely I had purchased my non-refundable coach airplane ticket. Tracy started saying she might not show up, and eventually it became a definite. But, she would be on for regular Thursday night N/IH/F chat....so I could do that the night before the conference from the hotel. During the chat I met Ann Austin....
At this point, I wasn't sure there was going to be any future NN Conferences for me. Since they seem to usually be second weekend in October...and doesn't line up too well with other conference/convention activities that I want to do this time of year (namely the Ohio Linux Fest...which is usually in mid-ish September, though the year I last went it was on the Columbus Day weekend....and some day I want to go again. And, Chicago TARDIS....Thanksgiving Day weekend. I actually wasn't planning to go this year , but decided that I would when Alex Kingston was going to be there....she's not now, but Fifth Doctor Fest makes it still seem ok....though its missing one companion that I associate with 5, though Tony Lee kept saying at last year's Chicago TARDIS "Adric is dead"... )
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....