Wednesday, June 22, 2016

When MSers Attack: Hate Mail Fail

After running ActiveMSers for 10 years, I’ve discovered blogging has its occasional hazards. I’ve received angry phone calls from businesses furious that their product did not receive better reviews in my tests. I’ve gotten dismissive e-mails highlighting my idiocy and lack of knowledge about fill-in-the-blank (e.g., “What do you know about stem cell transplants, huh, Dave???”). I’ve even been threatened with a lawsuit for violating HIPAA when a member in her 30s, despite common sense and living in the Internet age, chose to use her full real name on our public, searchable forum. Shocker, Google found it. Although I immediately scrubbed everything related to this member from my website, it took an hour to explain to her mom, yes her mom, that I cannot also remove content from Google. But nothing could have prepared me for last week: an epic, seething over-the-top hate mail from a fellow MSer blasting me for a perceived slight.

“First of all Dave, you have primary progressive MS, stop relating to RRM. The remark you made about the 5 foot nothing nurse really irks me! It sounds like you think you're better than she is? Well hello, you may be taller than she is but, guess what, she can walk and you can't!! So, who is really the nothing? Oh, and yes who has the job! Who the heck gave you this notion that you were better than shorter people? Were you scrawny a geek, and your parents taught you that you should be proud to be tall!? FYI, I'm 5'8" but I think it's terrible how some people be little people for people that are shorter than them to make themselves feel better!”

I don't even troll trolls.
Oof. Okay, for starters I have relapse remitting MS (perhaps now secondary progressive, but not officially) and I’d like to think I relate to all MSers regardless of type. Technically I can still walk (slowly), but like that matters when it comes to being "something." And I do just fine running this little website called ActiveMSers. Ah, I digress. But making fun of short people? That’s not typically my MO. Now, I’m far from infallible. I’ve said some stupid things over the years (usually in a failed attempt at humor), and I’ll fess up, albeit stubbornly at times, when I lay an egg. But what did I do this time? Apparently use the English language properly. See, punctuation matters, e.g., Let’s eat Grandpa v. Let’s eat, Grandpa.

The best that I can infer after I found my jaw on the floor: in my most recent blog post I referred to my petite hero-of-a nurse who amazingly propped up my unconscious body as “five-foot-nothing,” meaning five foot, zero inches. The expression has been used hundreds and hundreds of times in recent news articles. It was immortalized in this iconic scene from the movie Rudy. Heck, usage in America goes back over 100 years. None of it derogatory. But this particular member of ActiveMSers must have grossly misread the sentence and thought that I had made fun of my nurse because of her height and called her “a nothing.” Nothing could be further from the truth.

I debated posting this for obvious reasons, but I felt we all at times need a reminder that words have consequences. I’m not going to kid myself that civility will rise up on the internet like a double rainbow (whoa, double rainbow all the way) and knee-jerk-reactions will vanish like Mr. Snuffleupagus (but he was right there!). But we are better than this. Members of ActiveMSers are working together for the same goal, to live better with multiple sclerosis. We are one.

Resist the urge to criticize this member—well, now former member (I welcome her to rejoin). We all have bad days, we all say things we regret. I’m not excusing her comments, but lashing back serves no positive purpose. This disease of ours can put us on an edge (or a ledge?) that is difficult for others to comprehend. When that happens, take a breath. Step back. Be the bigger person. And for gosh sakes, next time someone feels I need to get straightened out (and there will be a next time), maybe give me the benefit of the doubt. Oh, and leave my parents out of it. My poor folks tried their best.

Wednesday, June 15, 2016

Giving it a Shot

Selfie with the Space Needle
When the FDA approved Zinbryta (daclizumab) last month, one line in the FDA press release “stuck” out to me: “long-acting injection that is self-administered by the patient monthly.” Injection. Self-administered. In other words or in plainer language that anyone with multiple sclerosis can understand, the FDA is referring to SHOTS. There is a reason I’ve written that in ALL CAPS. Because for years, shots have FREAKED ME OUT. And just when it appeared giving yourself a shot for your MS was going the way of the dodo and of friends to invite over for dinner who consume gluten, this news drops.

For some, shots are fun. The band LMFAO is famous (infamous?) for singing about shots. Steph Curry, Ronaldo, and Ovechkin all enjoy taking shots. Ansel Adams was a shot expert. Katniss Everdeen has an awesome shot. Me? I’m not a huge fan. Since childhood, I’ve tried to follow a general rule: AVOID SHOTS. Getting diagnosed with multiple sclerosis ten years ago, though, sure mucked that up. My options back then: a daily shot, a few times a week shot, or a weekly shot—with a needle so large you might mistake it for a Seattle landmark.

Now if you think I am exaggerating my fear of needles for the purposes of blog humor, you would be wrong. I gave up watching medical shows years ago because of needles. I cringe and close my eyes if I catch a glance of someone getting a tattoo, even a tattoo of a cute, carefree dolphin with sparkles and rainbows. Heck, I’ve weighed the benefits/drawbacks of lockjaw to argue the possibility of evading a tetanus shot.

Ovechkin likes to take shots and give them.
So when I gave myself my very first shot over a decade ago, it was an experience that I’ll remember forever. And, unfortunately, so will poor Laura and the 5-foot-nothing Panamanian MS nurse who had to prop up my lifeless body. Apparently, at the time my brain was not comfortable with the fact that I was sticking a SHARP NEEDLE into my PRECIOUS SKIN and then INJECTING MEDICATION. And by not comfortable, I mean it went into total shutdown mode, which I discovered is not recommended for a number of reasons. For starters, you need a functioning brain. Second, you are holding a sharp needle. Third, a tiny, 50-year old Panamanian woman is not the ideal person to support a 6-foot tall needle weeny who just made himself pass out while holding a sharp needle.

Fortunately, as my bottom was sliding out of the chair, the nurse grabbed and supported my rear end while Laura rather urgently sought assistance, or so I’m told. It would have been a sight to see if I had not been unconscious, dreaming of riding a rocket-powered Cheeto while lassoing cans beer (I’m just guessing here, but such dreams for me seem plausible if not probable). The MS nurse gently slid me to the floor and in moments I had the entire neurology department looking in on me as I was shaken awake.

The closest I've ever come to a tattoo. Note the sparkles!
When I came to, it dawned on me that all was fine with the world. The universe did not implode, Daniel Powter’s song Bad Day was still topping the charts (oh the irony), and the Cubs didn’t win the World Series. Over a thousand shots later, I can say with authority that giving yourself a shot—voluntarily, not under duress or threat—actually is not too hard. Or that painful. Or that terrifying. Seriously.

What I am trying to get across: If I can do it, Mr. Needle Overreacting Wimpy Scaredy Cat, you most certainly can do it. Trust me. Just get your brain wrapped around the idea and go for it confidently, with purpose, knowing that Dave broke down those barriers of self-afflicted shot embarrassment years ago. It might take a little time to get into the swing of things and adjust to the prick, but it’ll happen. You might screw up once or twice, and that’s okay. You’ve totally got this. All that said, it might not hurt to do your first poke on a padded surface.