Introductions- Sleepyheads In Ontario!
Posted 08 November 2011 - 11:50 AM
Posted 07 September 2013 - 04:02 PM
Hello, i am Carrie-Ann
I started the support group
- Canadian’s With Narcolepsy: https://www.facebook...olepsy.network/
I hope you all will join!
i also started many other groups if you are interested message me!
I hope to have get-togethers, or meetings / meet-ups and events eventually in Ontario, and other for all of us "Sleepy Heads", hehehe.
Here is a little bit more about me!;
Carrie-Ann is a 21 year old, Canadian, female. She is completely self-employed, Carrie-Ann takes part in many things... She did model, does photography, designs clothing & accessories, background acting, photo retouching, videography, video editing, blogging, youtub'ing, did do hair & makeup styling, wardrobe styling, among many other things! Carrie-Ann has been diagnosed Carrie-Ann lives on her own, with one roommate who is slowly beginning to understand her condition. Carrie-Ann mainly survives off of web design, and social assistance or photography at this time, but is interested in getting healthy enough to do better things. She had always dreamt of being in the Air Force Military, and or traveling the world as a sponsored volunteer, while taking pictures for magazines such as the National Geographic... Her health has made these dreams less, possible, or more so impossible... So she settles, for what she is able to do with her, Narcolepsy, without Cataplexy, though she does experience, though very rarely, hours or a day of paralysation... The doctors do not think it is Cataplexy, but they do not know what it is, they have said possibly a muscle disease and are currently undergoing testing. She loves art, photography, film, and her other dreams that are more possible now to reach than her old ones, with her Narcolepsy, include; Directing (acting and horror movies), and being an Advertising Agent. She has not been able to finish high school, and really wishes to go onto College as soon as she can focus well enough to process information she is trying to learn while doing her studies... She has been struggling a lot with academics, and is currently trying to figure out why her skills are decreasing... Carrie-Ann has started this group, along with her, Canadian's with Narcolepsy group, which currently holds 52 members - https://www.facebook...olepsy.network/, and her Narcolepsy Gamers group which currently holds 81 members - https://www.facebook...y.Gamers.Group/ ... She also was contacted by Wake Up Narcolepsy, the Toronto/Canadian area, of the Non-Profit Organization, to take part in helping raise awareness, and her and her group helping out with Fundraisers, for research for a cure for Narcolepsy... Currently they are brainstorming ways on how they can all work as a team, and work together. Carrie-Ann also suffers from General Anxiety Disorder & Physical Depression... Though she has learn to deal with it in the best way she can and manage it well enough to not let it affect her life much anymore except for the uncontrollable, breathing difficulties along with anxiety. Carrie-Ann recently quit modeling which she has done from the age of 14-16 to 21 years old... This was causing a lot of depression and stress in her life, and since she has quit she feels a lot better!! Keeping up with these groups, and also looking into being an Activist and Narcolepsy Advocate makes her world brighter and brings hope. view all of her links at... http://itsmyurls.com/carrieannburns
(Btw if any of you are wondering why i am speaking in third person (i swear i am not full of myself! , i copied and pasted this from a group where i had posted an intro for a Narcolepsy support group)
Posted Yesterday, 09:07 PM
Hi I'm Jill, I am turning 30 and was diagnosed with Narcolepsy - specifically Hypersomnia (Excessive Daytime Sleepiness) at the age of 21; and was living with symptoms (undiagnosed) for approximately 4 years before that. Up until recently I was taking Modifinil (Alertec); then was told by my pharmacist when I went for a refill that the medication was on backorder and they were not sure when it they would get more. My Sleep Doctor put me immediately on Ritalin and have been on that for about a month now.
I have read some posts in regards to driving - Because my Narcolepsy is completely controlled by medication I am able to drive - more interesting - about 2 years I obtained my F class (ability to drive a 22 Passenger bus). Part of the process was doing a physical in which I had to disclose that I had Narcolepsy. The application had to go to the Medical Review Board of the Ministry of Transportation. After about 3 months and a note faxed by doctor the Medical Review Board allowed me to continue with the licensing process.
I would say that in regards to living with Narcolepsy, I have been very lucky - I have a full-time job as a Youth Worker and am able to drive. I do however, remember exactly what it was it like to live with undiagnosed Narcolepsy.
If anyone ever has any questions, feel free to contact me - I would happy to try my best to answer them for you.