Yesterday I was contacted by Linda and she invited me to be a guest poster for MSRelief! Well you can imagine how puffed up and important I was feeling, right? I mean who would not be to have someone you don’t even know be so pleased with what you’ve done that they want you to talk to all their friends, you know?
So anyway, I sat down like an hour and a half ago to write something and everything I’m coming up with is just sucking. So in my ongoing attempt to not reinvent the wheel, I’ve pulled from my own blog, updated it, and here it is for your (I hope) reading pleasure.
Some background about me first – I’m a 49 year-old, married mother of two dogs and two cats. I live in Georgia but was born and raised in New York and have the attitude and the potty mouth to go with it. Oh, and I was diagnosed with MS in 1998.
Dear [unnamed MS forum],
Back in 2005, the New York Times magazine did a small article on you, and how you were something new and unseen; a place where patients were sharing their most intimate medical information with total strangers and detailing the course of their disease. Fascinating, and chock full of real-world experiences with tests, procedures, drugs and doctors. At the time, it was a source of really good information [I learned about clinical trials and off-label treatments] and if anyone appeared to be gaining financially by recommending a product, they were promptly booted off the site. It is also known that our information will occasionally be aggregated and sold to a pharmaceutical company. Nothing personal, just some basic stats. Hey, this is a very well-run, robust forum, they’ve got to make money somehow, right?
When I signed up I believe there were about 7,000 or so members. Today there are over 27,000. But apparently there are barely over 500 who are what’s called Three Star members. Three Star members are those whom are reporting things like sex, age, height, weight, prescription and non-prescription therapies, lifestyle changes, stuff like that. In other words, data points that can be aggregated and put into a report for a customer to analyze. That’s 0.19% of the total population of users. So, what are the other members doing?
Obsessing about every. little. thing.
Asking the same questions over and over, ad nauseum [there is even a search box where one can find every single post with a word or phrase in it but does anyone use it? Apparently not.]
[Topic titles are real, Responses are mine]:
T: How Much Pain Can MS Cause?
R: Sorry, that’s a stupid question. Seriously.
T: Vertigo Has Entered the Picture
R: And . . . what??
T: My Spouse/Family/Friends Don’t Support Me
R: Well honey, I’ve read back through your posts here and I gotta tell ya, if you behave around your spouse/family/friends the way you behave on this web site, I’d drop your whiny butt off at a bus stop on my way out of town, I mean holy crap!!
T: Scared to Exercise Now (with details of her most recent exercise session)
R: So you had a relapse after walking an unspecified number of miles. And that much walking is a rare occurrence for you. Really? Howzabout this: DON’T F*@!#* WALK THAT FAR IF YOU’RE NOT USED TO IT. What are you, an idiot?
And the undisputed winner and still champion is:
T: Oh My GOSH!!! It hurts sooo bad!!
R: Oh for F*@!# sake, obviously not that bad because you can STILL TYPE.
We all know MS is different in everyone. But I really, really, really believe it’s worse in those who don’t stand up to it. By that I mean, deal. DEAL. Whining and pity parties are complete wastes of time and ultimately get you NOWHERE. So, stop. Cut it out. Enough. Shaddap.
My advice to all the whiners- none of whom have asked me but I don’t obsess about such formalities – is, get your head out of your butt, put on your big boy/girl pants and live the best possible life you can. We only get one, remember?