Myositis Awareness Day

In honor of my recent birthday, I thought I would give in and do a personal post. I found out that today is National Myositis Awareness day (kind of pressured as it falls the day after my birthday, which I felt horrible for not knowing).

 On Wednesday we wear blue

On Wednesday we wear blue

 

Sooooo, if you haven't guessed it, I have Myositis. Yep. There. So figured I would do my part in spreading education via social media since I already do it with parents on forums and online groups (more of a behind the scenes type of helping). I never really talk about it but here goes.... 

There are 3 different types of Myositis (dermato, poly & inclusion body). I have DM, so I'll let ya in on the super powers I have acquired from the copious amounts of chemicals I've drowned in. 

I'm one in a million, literally. One in a million people may have DM. 

So you know how normal people have white blood cells that fight off infections when you get sick? Well, my body decided that my muscles and skin looked extra suspicious and  took them around back and gave em a good beating. Pretty awesome super power, I know. Plus I could basically get out of anything for being sick, because, uh, I'm always sick.

 Thanks Karen

Thanks Karen

 

My cells ate away at my muscles and skin. Because of this I have muscle damage that I won't get back and I have scars that can compete with a Gang Banger. 

Since your muscles are involved ie limbs as well as esophagus, heart, lungs.... You could swallow and choke on your delicious chipotle, or stop pumping blood and choke or stop breathing all together and uh, well game over. Luckily mine currently just restricts me from normal movement, chronic cramping, fatigue for days, a radiate redness comparable to a sun burn and tightness far beyond the result of any anti-aging creme   (but like the type that you would have to absorb into your muscles, for whatever reason I get this vision of my daughter petting the dog hard. so the dog feels it good, HA) and I also have concentration issues as a side effect from the awesome chemo drugs.  Hense the side thought.

I'm in remission, which is when you just deal with the damage and take lots of supplements/meds and will occasionally be a tester (when you try new treatments and you glow in the dark as a side effect) when I have a flare up.  

The only semi- famous person I knew that had DM was Ricky Bell. You know Ricky. RICKY!    No you don't. Funny enough he was a player for the Bucs and passed away the year I was born, unfortunately it killed him. Which clearly meant I needed his throw back creamsicle jersey. Took forever but I got it.

Many don't live past the 5 year mark with DM. Thing is, I don't look like your typical sicky. So when people hear me say I'm tired, or hurt, or can't party and hang like others, they would typically think I'm being lame........

 

So just remember, there are some people out there (like me) that would love to have your worst days.

 

(Didn't want to end on a downer, so don't feel bad for me, I'm still here and going to continue to do great things, just know that everyone has their struggle and just being nice may be a game changer)

xoxo

C & G