March is Essential Tremor Awareness Month

Link: http://www.essentialtremor.org/National-Essential-Tremor-Awareness-Month

In late December 2010, the U.S. House of Representatives officially designated the month of March as National Essential Tremor Awareness Month. We invite you to get involved in helping us raise awareness in communities throughout the U.S. and abroad. With 10 million Americans alone affected by this life-altering condition and a general lack of public understanding, we need your help to spread the word.

What is Essential Tremor?
Also known as familial tremor, benign essential tremor or hereditary tremor, essential tremor (ET) is a progressive neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk. It is often confused with Parkinson’s disease and dystonia. Because of stereotypes and a lack of awareness, many people with ET never seek medical care though most would benefit from treatment. Learn more about ET.

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Last night Sleep Paralysis came by for a visit

Last night as I was starting preparations to go to sleep, though I was intending to complete a project involving Kdenlive but didn't start, I received a HOT phone call. Yesterday was the start of my week on call. Webmail was down for other people, not just me (which I had noticed at the time when the issue was reported to have begun, but taken as a sign to get ready to go to sleep.) The call had come in quite some time after the start of outage.

Some how during that I had scraped up my right shin, though it didn't start to really hurt until sometime later when I was showering before going to bed.

I had intended to go to bed at 11pm, but it was about 11:50pm when I actually did. Though I left my pillow alarm set to 3:00am and 7:00am. Being on call, I had work phone next to pillow alarm as well. I took my first dose, and it seemed that I was out pretty quick. Because, I was woken around 12:15am by a call asking for a status update. Which I had apparently answered, without realizing it though I hadn't said anything on answering. I also hadn't taken my cpap mask off, but I managed to get words out that to me didn't sound too badly distorted. Was reminded that it was policy that I be harassed every hour for status updates, even though we're just the messenger for this kind of outage so there isn't any change in status until we get one from the service provider. And, service provider has a service desk that adds another hop in the chain so calling in new incidents to find out status does nothing.... But, I instead was informed that help desk had only received one call in the last hour and things appeared to be working from the operations center, so they call again just before closing operations for the night at 2am, and then wait until morning.

Well, around 1:46am I had vague sensation at first that something was pulse vibrating near me. Pillow alarm is continuous vibration, phone is pulse vibration. I could see that it was operations calling, but I found that I couldn't move. Yeah....sleep paralysis was paying me a visit. :wave:

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Eye Exam Update

There really does seem to be a correlation between when insurance pays out and when I get results, because I got EOB for my Feb 8th Eye Exam on Feb 19th, and the next day (Feb 20th) I get a phone call about the results of the test that was performed in the Eye Exam.

OTOH, getting it on the first day back to work after returning from Gallifrey One was probably a good thing, going to Gallifrey One this year was somewhat less enjoyable for a variety of reasons and the big prescription change was one of them. Worrying about other stuff would've probably made things worse.

Anyways...I'm guessing the extra test was the Retinal Thickness Analyzer...anyways it noted that there was some thinning in my retina which could indicate glaucoma and that I'm to do another test in 6 months.

Not sure where I land on this....

Meanwhile...I went and pulled the trigger on a new pair of glasses on Feb 23rd. Hopefully it'll be on the shorter side of a week to 10 days. Still haven't decided when I'll get a second pair, and whether that second pair will be prescription sunglasses, transitions or something else.

I did something amazing this morning

I've been having trouble with getting packages delivered to my home for some reason lately....recently found out that apparently, they've been leaving my packages outside at the wrong address...where the unit in that condo building was vacant for the last part of January and seems to be getting work done to it now.

Two deliveries lost, that I know of. Since I get other deliveries without notice, I might not know that I'm missing something. In the first case, I got an email from UPS Surepost saying the package had been delivered by the post office...but I got nothing. The second time, was for CPAP supplies from CPAP.com, so I was tracking its progress. When it showed up, I wasn't home so they left a note. I asked for it to be redelivered, but nobody showed up with it. Later I found it to be marked as delivered. After calling USPS to find out where it is....I got call from supervisor saying the carrier came to my address, knocked and left it. But, nobody knocked on my door at the time in question.

And, I was sitting by the door at the time in question....I was on the phone for the February Midwest Narcolepsy Support Group meeting, which ran past 12pm.... so couldn't get supervisor to explain why there was no knock. The next day, a UPS delivery person mentioned that he had seen packages for me left at another address, said I should go check it out. There wasn't anything there....but since then I found another person that confirmed that packages were being left there. Hinted that if they hadn't been picked up by somebody else, they might have gotten hauled off the dump with the construction debris that had been piling up by the door.

Fortunately, two shippers that I know of, agreed to send me replacement shipments. The first wanted a different address to send the shipment to, so I provided them with my UPS Store address. That might take a while to get, since I originally ordered the item on January 4th, and it didn't ship until January 17th and allegedly get delivered on January 23rd...it was surely too large to fit in parcel locker.... It was one of those special purchase sites, for greatly discounted one day sale...so I'm surprised that they would replace the order. CPAP.com chose to resend using the same method to the same address. It arrived yesterday, and apparently after 5pm (5:05pm), but I wasn't home, since I aim to catch the 5:38pm bus home....and in general typicality it was running late. I thought about requesting redelivery...for Wednesday, since I had plans for this afternoon, and didn't want to risk wasting the whole day waiting for a no show again, etc. Plus I only sent an email about what I found out last night, so I don't know if they would've done anything to fix it yet.

After some thought though, I decided that what I might attempt to do, is get up early on a weekend....which is challenging, since I'm still sleeping on Daylight Saving Time. Doesn't help that I spent 8 nights on PST and 4 nights on MST...where not changing my CDT sleep schedule fit with sleeping in those time zones. Not sure what kind of schedule I'm going to sleep on when I spend some more time in PST.

And, be really early...and try to catch the 9:02am bus to the mall....get a haircut, do some shopping, indulge in a Smashburger, before visiting the post office before it closes at noon on Saturday. (M-F 8:30-4:30 and S 9:30-12:00). Well, I slept in a bit, and things moved slower in some areas than expected. In the end I missed, in it taking longer than expected to find two matched socks.

So, I opted to catch the 10:02am bus. It was running a touch late....and after the student union it was packed...people got left behind packed. Large groups of students going to Dillons East on Saturady.... So, I got off at the mall, got a aircut, did a little shopping before and after...and then decided to go to the post office to get my package before deciding if I would either do SmashBurger or catch the next bus home. There was quite the wait at the post office, I guess I don't know what its like, since its been more than 5 years since I was there. And, the last time was to renew my passport.

When, I came out it was about 20 minutes before the 11:30am bus back home....I didn't really want to be carrying the package around and didn't feel like I would enjoy having not enough or too much time at Smashburger either way. So, I waited for the bus to show up and ride it home. It was a pretty empty bus....2 people the whole way back...and then there was one.

So, home before USPS would typically show up...and there's some packages that should arrive today...so I can wait and see if those arrive correctly.

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I got an Eye Exam

So, since my Narcolepsy Diagnosis, I've been having vision problems...since September. I suspected that some of it was due to my medication, and I did find that I was right...but learned from Facebook before the NN Conference in October that what I was experiencing was more associated as a side effect of my stimulant than the other. I might be starting too strong with it in the morning.

Making a change on that front, brought about an almost immediate improvement....and while at the conference, I learned of another thing to adjust and that also made for a pretty quick improvement.

However, I still felt that my prescription had changed...but didn't feel like I could get an eye exam and new glasses done in time for LISA, so I put it off....except I guess I put it off too long...because I finally got the eye exam today....but, I'm off to Gallifrey One next week. Not enough time to get a new pair of glasses. Manhattan, KS needs an 1 hour place....though do they do computer progressives in an hour? No, I need my own time machine.

For the progression...see "The Result of my Latest Eye Exam"

And, then after the eye exam, the doctor remember that I had done poorly in the upper left quadrant of my left eye in the peripheral vision test, and that he would see how I did to see if there is concern.

I again did poorly in that area. Said this kind of thing usually points to Glaucoma, but my eye pressures are perfect so that doesn't. So, he's not sure still...though he did notice in the up close exam of my eyes that my left eyelid does hang longer than my right, so maybe that's impeding my ability to see in that quadrant. But, he recently got this new machine that can quickly determine if it is and he had checked my insurance and saw that I had met my deductible. (Getting my Xyrem refilled on Jan 2nd, made me meet my $2500 deductible really quickly....and it didn't hurt as much as I thought it would either...) So, the extra test would be full covered. The normal eye exam portion is covered 100% and not subject to deductible....as are other defined preventive exams....

Meanwhile, I'm wondering if a pair of prescription sunglasses will work into my plan this year? Since the change is much, and given how I bought 3 new pairs of glasses last year....and only have the one pair. I should have a spare.

Perhaps, I might revisit Transition lenses again... for one of the pairs.... :hmm: Though so far I haven't made any use against my limited use FSA, which I had considered lowering, but in the end had kept at the same level of funding this year.

But, first how will I get by at Gallifrey One.... guess we shall see... :roll: