Monday, January 30, 2012

Rare Disease Blog Hop

I can't tell you how many times the following conversation has occured:


Random person: "What's wrong with your leg?  Did you get hurt?"
Me: "No, I actually have a neuromuscular disease that affects my legs and feet."
Random person: "Oh, wow.  What's it called?"
Me: "It's called CMT...."
Random person: (Interrupting) "Country music television?!"
Me: "No....CMT is short for Charcot-Marie-Tooth Disease."
Random person: "Huh....I've never heard of that.  Does it affect your teeth, too?"


In my 29 years, I've gotten very used to most people not having any idea what my disease is.  I've even gotten used to having to explain to some doctors what my disease is.  I've gotten used to the stares, the weird looks, the people who avoid eye contact, and the awkward questions.  Unfortunately, a lot of those things just come with having a rare disease.


Did you know that an estimated 350 million people are affected by rare disease worldwide?  That's 1 in 10 Americans....30 million Americans.  30 million Americans is more than the total number of people living with cancer worldwide.  There are more than 7,000 rare diseases with some affecting less than 100 people.  These rare conditions are chronic, life threatening, and fatal.  There are NO cures for any rare disease, and only 5% of the diseases have any type of treatment.


30 days from today (February 29th) is World Rare Disease Day.  Why is the number 30 significant? 30% of children with a rare disease will die by their 5th birthday.


Help us spread awareness about rare diseases worldwide!  Today is  the RARE Blog Hop Day. I invite all of you reading this to visit the blogs listed below, and also visit www.GlobalGenes.org and www.RareProject.org/blog to learn more and find out how to participate!

Tuesday, January 24, 2012

Winter Blues

No, I don't have the "winter blues", despite what my long-term silence on this blog might indicate.  (I'll remedy that, I promise!)  My winter blues stem from a totally different source, one that usually is not psychological.


Now, I hate the cold.  I hate the snow.  I hate the ice and the slush and the gray, cloudy skies.  I hate winter.  My hatred of winter has seemed to grow worse as I've gotten older.  I hate driving in the snow.  I hate hauling my kids out to run errands in the cold. I hate being petrified of slipping on ice or slush.


I hate many things about winter, but the thing that I hate most is the pain.  Every year here in Utah, we get that one really cold, wet storm.  The one that suddenly moves in after a dry, relatively warm spell.  Well, actually, we end up getting quite a few of them during the winter months, but it's the first one that's the worse.  My bones start to ache. I become acutely aware of every single joint in my entire body....it feels like every little bit of cartilage has completely disappeared.  I begin to feel like an 80-year old arthritic patient.  It's like the body aches that usually accompany the flu, but about a hundred times worse.


I don't mean to sit and have a pity party for myself.  (I already did that the other day. LOL.)  Once it stays cold for a few days, my body normalizes and everything is back to "normal" again.  But until then, I will keep taking my over-the-counter painkillers that don't seem to work much, and use my best puppy-dog eyes to solicit extra back rubs from my husband. :)