Can Anybody Hear Us?

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I’m a pragmatic person.  Generally speaking, I think I’m pretty reasonable when it comes to expectations. Actually, I tend to “aim low” in terms of expectations.  It minimizes disappointment.

But here’s the thing, every day a TV commercial pops up for a new medication. I realize that medical conditions, like many things in our society, are commoditized.  It’s the law of supply and demand, so when you are affected by something rare, you aren’t gonna be somebody’s cash cow.  That doesn’t make it any less frustrating though.  Of course, I wouldn’t want to take precious dollars away from treatments for cancer or diabetes or Alzheimer’s or any destructive disease that impacts (way too) many people.  But when I see an ad for toenail fungus medication I get pretty pissed off.  And if I’m being really honest, the erectile dysfunction commercials annoy me as well.  Granted, I’d be pretty bummed out if I had toenail fungus, but come on?  As to E.D., well you know that there are armies of research doctors spending millions of man-hours on that one.  (And yes, I used “man-hours” on purpose.)

The thing is, Trigeminal Neuralgia, or any of the “algias” are so damn devastating.  And while the term “Suicide Disease” was coined in days past when there were no treatments for TN, it still takes people’s lives.  Much as I want to downplay that name, some of us TN Warriors get to a point where they can’t take it anymore.  It is a tragic and catastrophic decision that destroys everyone in its wake.  And TN takes our lives in other ways.  Okay, not to the extent of a terminal illness, but differently.  We have to stop working.  We can’t be the parent or spouse or sibling we want to be.  We see our social circles shrink.  Our health deteriorates physically and mentally.  It’s the end of the world as we know it.

There are entities that do serve the Trigeminal Neuralgia community, most notably the Facial Pain Association, and I know there are dedicated research scientists trying to find a cure.  I just can’t help but feel that it’s not enough.  I mean, TN is considered to be the most painful medical diagnosis known to man.  You would think there would be more doctors trying to take on that challenge.

Imagine this scenario: You’re a research physician at a cocktail party making small talk with some other people.

Person 1:  “So, what do you all do for a living?’

Person 2: “I’m an accountant.”

Person 3:  “I’m a graphic designer.”

You:  “I just cured the most painful medical diagnosis known to man.”

Aaaaaand… mic drop.

Seriously, why wouldn’t any doctor like that to be his/her legacy?

*Sigh*  I wish there was a way for me to get famous so that I could be the advocate we all need to spread awareness.  (Trust me, this blog ain’t gonna be that ticket.)  Hopefully one day soon someone will take up the cause of TN in a big way.  Until then, I guess I should just be happy that I’ll never have to worry about toenail fungus.

 

 

 

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6 responses to “Can Anybody Hear Us?

  1. You write beautifully even at 4 in the morning and yes toenail fungus, wow, I’m so happy they have a cure for it, lol. I am from Chicago and have some very good friends in Norway and here that are neurologists, I’m going to make some calls, not that you haven’t already but who knows. It’s like when my partner was dieing of Pancreatic Cancer in 2007 and the only commercial was for Breast Cancer, and yes I was angry, we’ve got a handle on that but what about the cancer that 95%always cause death, Pancreatic.
    Keep writing, people will hear you.

    • Thank you Carrie. My condolences on the loss of your partner. My sister died of brain cancer, so I understand your frustration. She is my inspiration, my way of putting my life into perspective when I get down about having TN.
      I greatly appreciate your compliments.

      ~Sally.

  2. Thank you for writing this. Keep writing about it, because it’s all we can do at this point… just keep raising awareness the best you can. I’ve had TN my whole life, and all we can do is keep fighting and keep sharing our stories. It’s the only way to let people know about TN!

  3. I found it interesting that one of the medications that may work for you works for my bipolar. It’s an Epilepsy medication.

    • Yes. Anti-seizure meds are the front line of treatment for TN. They are a bandaid but by no means a cure. And I’m sure as you know, some ca be very hard on the body. Anti-anxiety meds are also common. I hope whatever you’re taking is helping you. Thank you for reading my blog!

      -Sally

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