Julie Flygare has been a huge advocate and voice for Narcolepsy over the years, every time I check her blog she is always up to something exciting. Whether she's writing a book, running a marathon, or working towards helping the FDA understand narcolepsy she's constantly striving to better the lives of Narcoleptics. If you do not follow her blog and you are affected by Narcolepsy or interested in Narcolepsy I don't just strongly suggest...I insist you head over to her site and subscribe to her or at least bookmark it. You'll be constantly inspired by all she does, all she is and how much she truly lives her life to the fullest.
Julie Flygare: REM Runner Blog
She recently contacted me about a survey and spreading the word about an upcoming meeting help by FDA that was focused on further understanding Narcolepsy Patients. The survey, the meetings, and the more we spread the word the better chance we have at properly educating the FDA. With such a large blogging community I was hoping that a few of you could take the time to take a survey. The survey takes about 15-20 minutes and is for people with narcolepsy, people who know someone with narcolepsy, and of course people who are simply affected by narcolepsy. It's an opportunity for everyone to share their struggles, their victories and all that comes with naroclepsy. Narcolepsy is different for everyone and not one medication, schedule or lifestyle is the answer. With the help of our community coming together we can open doors for ourselves and create a brighter future.
Julie has written a blog that I have attached below which has more information than I could ever provide; go ahead and read more and please please please take the survey(also linked below).
Thank you for reading and thank you in advance for your participation. The narcolepsy community thanks you.
Saturday 31 August 2013
Sunday 11 August 2013
Step in the Right Direction;
A lot has changed since I wrote that last blog, all
changes for the better. I am finding myself to be in a really happy place. I
wasn’t miserable or anything prior however this past month has been exciting
and steps in the right direction.
I want to travel and would love to be traveling this
September however I applied for a photography position with Life Touch on a
whim and ended up with a new job. At first I was hesitant and wondered if I
really wanted the job however it’s time I start working in my field and
profession. The job isn’t perfect and I am taking 1250+ pictures of students in
the same pose a week…however it’s the experience and the atmosphere of working
around other artists/photographers that will be delightful! I started the
training last Thursday and have one week left of that before we get to working
in the schools and doing all the School Portraits! Two things I love all
wrapped into one; working with kids and snapping pictures!
The job allows me to stay working with the family I have
been a nanny for! The kids are in school full time starting September and won’t
need me for full days anymore. I have chosen to continue on with them in the Fall
with only working about 20 hours a week. I have surprised myself with how
attached I have become to the kids. These two kids have changed my viewpoint on
a lot of things and have really tested my level of patience. I see the
positives of me being there for them and I have seen the changes in their
behaviors and general happiness. I don’t think it’s fair to walk into a young
child’s life and be such a big part only to walk away within six months.
Therefore I will stay till December and then reevaluate. Whatever I do choose,
I know I will try my best to keep in touch with the family as the years go by.
The family is on Vacation for the month of August therefore
I have been pretty worry free up until last Thursday when I got the photography
job. It was an absolute pleasure to sleep in past 6:30am. I have found since
working such long/early days that I can no longer stay in bed till noon;
10:30am is about as late as it gets!
This upcoming month my brother is moving in with his
girlfriend on more official terms. He has been living with his girlfriend in
his girlfriends parents house, but now have found a townhouse together to
officially move out. I have found his past living arrangements to be hilarious,
more than odd… and too easy. I believe his gf’s mom does a bit too much for the
two of them in terms of running a household. It should be interesting watching
my brother adjusting to cooking, cleaning and doing all the household chores with
his gf! Some entertainment for his sister! I have done a house-warming gift of
a picture I took, printed on canvas. I also did a photo shoot with them last
week and will share a few on this post!
Most of you know I coached a soccer team this past outdoor
and quite enjoyed myself. You also might know that I found at times it to be
difficult to enjoy due to parents. This fall/indoor season I have the
opportunity to continue on and do it again. I’m kind of caught in a tight
place; my head and my heart are having a tough time rationalizing what it is I
should do. I love working with the kids, I love seeing them grow and develop as
players and I also love the satisfaction it brings me. However these past four
months were hard on my health. I was stressed out, emotional and often times
just angry or annoyed. It was rarely due to the kids, it was always due to the
parents. I think that’s why I am having trouble deciding. I want to do it for
the kids, but for the amount of time and energy and volunteering it is…I have
to ask is it really worth it? It’s a longer commitment for indoor and I would
hate to commit and then have to leave because I end up losing my mind. I just
don’t want to be letting anyone down, don’t want to let down the kids or myself
I suppose. I guess I really just need to have talk with myself and decide
what’s more important in my life right now. The kids mean the world to me, I
don’t want to quit and have kids thinking I am quitting on them. I will be
sitting down with the club director and seeing about options or changes that
could be done to help ease my volunteering. At the end of the day it’s not paid
time, it’s volunteering.
I am off for a slow pitch game with a bunch of friends, then
home to bed so I can get a good nights sleep before work early tomorrow.
Wishing you all a wonderful rest of your summer!
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