What color is your disease

I find myself being jealous of the people out there with more widely known diseases than Cushings.  I like being rare, don't mistake what I'm saying here.  Being a medical freak show is kind of fun.  Or it was at the beginning of this saga.  Now it's just a pain in the ass.  It would just be so much easier if my disease was more popular.

Take breast cancer for example.  Purchase, use or wear anything pink and you are a supporter.  Very few of us who actually interact with people on a regular basis remain untouched by this disease.  If you have breast cancer, not only do you not have to explain the disease to people, but there is a built in support system of friends, relatives and coworkers who have battled, or watched someone they know battle it.  There are walks, runs, and stacks of return address labels benefiting breast cancer research.  Prominent stars, baseball and football teams accessorized in pink, and corporations work on bringing awareness of the disease. 

MS has their 150 mile bike rides.  Alzheimer's has walks and purple ribbons.  Women's heart disease has "Go Red" campaigns.  The Leukemia Lymphoma Society has Team in Training. 

I have the bad luck of getting an obscure disease that no one knows exists.  And the things Cushings does to the body are so weird and catastrophic that explaining them to other people is crazy talk.  There are no Cushings bike rides, walks, pins, Kitchen Aide appliances, baseball caps, bumper stickers, or Hollywood stars stumping for Cushings awareness.  I've got one person that I met a couple of visits ago at NIH, who is dealing with her own Cushings that I can lean on for support.  And Christy leans on me for the same reason.  How can regular people understand when you gain 20 pounds in 10 days for no reason, your blood pressure goes through the roof and your body can't process sugar anymore.  All of a sudden you bleed all the time, your skin becomes practically see through, your hair falls out and your face looks like someone stuffed it with cotton balls.  It would be so much easier to just wear a tee shirt saying "Cushings Sucks" and have everyone know that I'm not just bald and fat, I have Cushings!

Maybe someday Christy and I will put on a run to raise awareness about Cushings.  The participants will have to wear those blow up sumo wrestler costumes that make you look like Asian weebles, and drag 50 lbs of dead weight behind them.  Along the route they'll have to eat no salt, low carb food that tastes like cardboard, take their blood pressure 42 times and identify mystery symptoms as they pop up.  Much fun will be had by all...especially Christy and I.

I suppose it wouldn't be my style to get a run of the mill disease, but a girl can dream....