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#21 exanimo

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Posted 16 April 2013 - 11:24 AM

I started a blog to document my pregnancy since I couldn't find any information about what it was like to be pregnant with narcolepsy. It's not very well done, but I plan to hopefully continue adding to it as I go from being pregnant to being a mom with narcolepsy....

http://sleepy-mwn.blogspot.com/

I think that is great! I am not having kids any time soon, but want to eventually! And I think I'd want to blog or vlog even.

Which reminds me there's a vlog on YouTube and I think she is awesome! She has N w/ C and I really like watching her videos about N.

Link to her YouTube:

http://m.youtube.com...h?v=iDuSxGOV6fI

Ther are other blogs there too. Sometimes video is a little easier to follow than blogs. I'm glad this thread has had so many responses! Connection is so important to support which is so important to our ability to raise awareness!!

Please keep posting any new updates. I have my LJ but I know I've only updated it a few times. I'll try a littl harder! I'd love to try vlogs as well!

#22 Heidi L

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Posted 06 May 2013 - 02:27 AM

I have a website about my remission from narcolepsy using a gluten free diet.

Lots of scientific info about Orexin there too.

Hope you stop by.

 

Here's my video.  Heh. 



#23 tkozman

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Posted 21 June 2013 - 11:03 AM

here's one: 

http://everythingnar...sy.blogspot.com



#24 SleepyMann

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Posted 17 July 2013 - 02:47 PM

Hello,

My name is Bradley Mann and I am new to Narcolepsy Network.  It seems like a great place to share ideas with others whom can relate to our illness.  When reading through the forums and messages, I saw this posting about blogs.  I too was at a loss for similar blogs.  And although I have always been a very private person, a very dear friend inspired me to begin writing a new blog/column on Everyday Health.  Writing was a lifelong dream of mine.  My wife Robynn and I both writing a about our life with Narcolepsy, Multiple Sclerosis and raising a family.  I would be happy to discuss issues with others and would be honored if you would check out our column at http://www.everydayh...colepsy-and-ms/

 

Thank You for reading my posting!

 



#25 dormir 2

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Posted 13 September 2013 - 03:43 PM

Hi Bradley,

 

I just read your blog entry that you linked above.  It is helpful to know I'm not alone.  I don't have a formal diagnosis of narcolepsy, but have had symptoms of it for as long as I can remember.  I was diagnosed with MS a couple of months ago on my birthday so I still have a lot to sort out, but reading your story and other stories like your's is encouraging.



#26 SleepyMann

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Posted 28 September 2013 - 12:26 PM

Hi dormir 2,

 

Sorry it took me so long to reply to your posting. The email alerting to the update get sent to a "notification" folder on gmail which I do not normally use. I have since updated the settings. I am so happy you wrote with your story. 

 

MS is a tough pill to swallow and yes, it does take some time to sort all things out. But once you do, this will truly get brighter. I write about so of my early, dark days with MS. I was only diagnosed with Narcolepsy a few year ago, even though I suffered with it for more than 20 years. It became much worse a decade ago.

 

Please feel free to contact me if you would like to discuss anything about either illness. I write for Everyday Health about Narcolepsy, MS and related disability information. I also know a lot of people in both communities whom you may wish to be in contact.

 

My contact information is a follows:

 

Twitter: @SleepingWithMS

 

eMail: SleepingWithMS@gMail.com

 

I write blog columns at --->Everydayhealth.com-Columns-SleepingWithMS

 

Please don't feel that you are alone. There are much more like us than it may first appear.

 

Regards,

 

Brad Mann