Category: "Support Group"

You can continue to support NAF when shopping at Schwan's

Link: https://www.schwans-cares.com/campaigns/18377-research-education-and-support-for-ataxia

Recently, there had been a fundraising campaign where Schwan’s was donating 20% of purchases made from January 30th, 2015 to March 16th, 2015 to NAF (National Ataxia Foundation) for research, education and support for Ataxia.

I had intended for years and years, about sometime after I had moved away from where one of my friends drove for them. But, I just never worked up to doing it. But, now that I’m less mobile, it seems my freeze has become somewhat bare and there are other things I wish I had on hand, but never seem to get. Though I had done frozen food by UPS from other online places in the past, but those places have come and gone.

So, I had every intention of placing an order before the NAF conference, but as time past….I ran out of time. Wasn’t sure how long it ran after the conference, but intended to do it first thing….though when I saw that I had until March 16th, I didn’t feel as rushed. Except life continued to happen, and suddenly found myself forcing myself to finally do it on March 15th.

Just moments ago, I was curious to see how the campaign ended….since the goal was to raise $5000, and before my order it was only $270…guess it came to a bit under $300. But also found this note:

You can continue support NAF when shop with Schwan’s

Thank you for your support of this campaign! NAF’s fundraising campaign period for the “Research, Education, and Support for Ataxia” has ended but NAF will continue to earn 5% until January 30, 2016. You can continue support NAF when shop with Schwan’s through this campaign page. Your continued support is very appreciated!

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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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Narcolepsy Careline

Link: https://narcolepsy.pafcareline.org/

Narcolepsy patients now have somewhere to turn for assistance. Created by an organizational partnership between Jazz Pharmaceuticals and Patient Advocate Foundation, this program is designed to help all patients who need assistance when dealing with the complications of a narcolepsy condition.

If you have been diagnosed with narcolepsy, the Narcolepsy CareLine is here to help you navigate the insurance and medical world as it relates to your diagnosis. This line is staffed by caring and knowledgeable case management specialists who will work with patients and their providers to ensure better access to care, help find solutions for medical debt crisis and assist in employment related issues. Now, narcolepsy patients have a partner on their side to guide them through the complex insurance and reimbursement system, allowing them to focus on living the happy and healthy life they deserve.

Midwest Narcolepsy Support Group

Link: http://lkc.me/mnsg

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.

Sleep Disorder Support Group at K-State?

Link: http://www.kstatecollegian.com/news/student-learns-to-juggle-disability-college-life-1.2210101

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 &#59;) 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 :p ) 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....