Hedwig

What I usually don’t say


Most of the time, I don’t talk about it, even here.  I hesitate, even though I publicize lots of things about my own medical issues, I don’t like to talk about it because it feels so….old to do something like that.

mean-old-lady

What?

 

While Crash Safely is ultimately supposed to be positive and fun, there’s a whole lot of the opposite out there when dealing with something like MS. I realized that there are plenty of people younger than myself (that is, in high school) and much older than myself ( i.e. looking at retirement and having been diagnosed later in life anyway) who are blogging about living with MS. Neither of these groups really speak to me.  I don’t have aspirations to get a great SAT score or watch my kids go off to college.  I live in a city, I like loud, live music, drag queens, turkey bowling, shooting and editing videos, robot puppets, coming up with fake band names and misadventures that generally involve glitter and/or leather.

Hedwig

Did I say “glitter?” I meant “bubbles.”

 

Needless to say, I saw none of that in the patient blogs about high school or retirement with MS.  Now I realize that a lot of these blogs are aiming to capture a large portion of the population and maybe I’m just a weirdo, but really?  I know I’m not the only MS patient who isn’t just rolling over and letting the disease tell me what to do.  I also know I’m not the only one who is fighting to live what was my normal life, even if that means choosing between said normalcy now and a possible sudden, early grave.

homes star runner suck dragon

Sing it, Suck Dragon!

 

Since I started Crash Safely in 2010, I have been on one of the most effective MS medications on the market today.  I haven’t relapsed since I started it, and damage that had been done prior to starting it is slowly starting to heal.

But….

I’m at risk for a crazy brain infection that could either kill me or severely disable me.  The longer I’m on this drug, the greater my chances of getting this infection become.  Truth is, no one knows what happens when you’re on it for longer than 4 years, so doctors tend to get you off of it quickly.

There’s nothing that works like this drug, currently, though, without a similar risk. I refuse to change my treatment, even though it means an incremental uptick in the probability of getting a crazy brain infection.  I’m currently at a  4/1,000 risk, which actually is less than one half of one percent. They don’t tell you the risk like that, though, because hey! a 99% risk that nothing will happen sounds pretty….positive, right?

There’s still a feeling of dread- what if I’m wrong? Also, what if my math’s wrong? What if I stay on this drug longer than my doctor’s comfortable with and I have a complication? What if I have to explain this to an employer? A family member? A random internet troll who really, really wants me to just let the bees sting my soul clear out of my eyeballs? Did I just mess up a possible great employment opportunity by writing that? Do my co-workers think I get ‘special’ treatment when I leave work early to get this drug? What if I develop antibodies to the drug, or allergies?  How will my doctors know I have that infection and I’m not just relapsing?  What if I give in and try another drug and I relapse and have to learn how to walk/write/tie my shoes all over again?

Death, the Temp Reaper.

OK, stop it.

 

All of this is my long-winded way of saying that while I don’t think about- or have- symptoms everyday- I do have a good amount of worry.  As abstract as MS can sometimes be presented as it’s a real destroyer of confidence. There are no easy choices when you live with MS, but it certainly does make the task of putting together benefit concerts seem a lot less complex.

By participating in bikeMS or  in the shows, by going to them, buying raffle tickets and bidding on silent auctions as part of Crash Safely, you help- even if it’s just getting me- and others like me- away from the spiral of over-thinking dealing with MS.

 

Serious stuff out of the way, I promise to return to being funny and sharing photos of the incoming raffle and silent auction items. Promise.