An Off-Topic Day

     Recently I sent out a survey asking members about their feelings on Planet Narcolepsy's first couple of months on the web, including any thoughts they had on what might be missing and what they'd like to see over the next few months.  One answer that stuck with me essentially mentioned that even though the site has been up and running with no problems for awhile now, the articles we all anticipated are not forthcoming and the content is not expanding in a way to keep people interested, especially the general public.
     Well, I don't exactly have a quick answer to that.  I do, however, want to make it clear that I have not abandoned the cause by any stretch of the imagination.  I've decided to spend some time on a regular basis, if not even daily, noting here what has been keeping me busy and how it is related to our goals.  A running narrative of my steps forward, back, and the (I think) incredible things I'm learning that aren't always that quick or easy to share with others in any other way than a quick hyperlink.
      What better day to start than today?

      I got up a bit early, without taking my Concerta.  I had to wait for my father to pick it up at the pharmacy, as I had run out yesterday and forgot to get it in the afternoon.  It was an unfortunate reminder of how much I really do need drugs to function every day, and I wondered how I could have possibly made it to work and through a full day prior to being diagnosed.  I fell asleep in my computer chair twice before my two cups of coffee and the pill kicked in.
      I checked the Facebook page, to see if there were any comments, new fans, or discussions posted. We now have 150 members, making more than half of them people NOT on my personal friends list.  I also checked the Twitter feed to see if anyone had posted good links, articles, or decided to follow us that I should contact.  No email that needed to be dealt with right away, check the boards at Daily Strength, and then the member forum over at the main site...all before any research or writing can be done.
      I've been following Mary J. Shomon on both Facebook and Twitter fairly closely.  I'm reading her book "Living Well With Autoimmune Disease" to learn more about how Narcolepsy might be connected to other diseases and body systems.  She is a well-known patient advocate who has a thyroid condition, and I've decided she's my mentor for the time being.  I notice she has posted a link to a site dealing with Celiac disease and gluten-free lifestyles.  This is interesting, as I just finished reading a section of her book on Celiac last night, and I'm beginning to think I may have it or be on my way.
     The website, Gluten Free Works, is fabulous.  I learn all about more symptoms (and check off a dozen for myself and several PWN I know), sign up for their newsletter, make sure their Facebook page is connected to Planet Narcolepsy, follow them on Twitter, purchase the founder's book, and spend at least an hour looking at patient stories and connecting the dots in my head.
     Why do I bother with the newsletter and all the social media, you ask?  Because every person who checks any one of my pages can be connected to that valuable resource.  And any person who checks their pages, can find me and Planet Narcolepsy.  If the primary goal is to band together and network and teach each other, we have to find each other first.
     Now, it's 5:30.  I have 4 dogs to feed, should probably dig up something for myself. I'd love to write another article for the main site, but I'm not even sure where to start. I think I'll just get back to that book on Autoimmune diseases and I'll tweet tomorrow what I learned.