Monday, October 7, 2013

Happy International Trigeminal Neuralgia Awareness Day!~

Today marks the first ever International Trigeminal Neuralgia Awareness Day and so of course I have to bring this to your awareness!  This has come to pass through the hard work of a group I have come to admire on facebook, a small group who has called themselves the TN awareness fighters who themselves suffer from the condition. They have spent countless hours over the last months in this past year organizing and emailing, writing letters, making calls and whatever else they can to bring this awareness day into reality. They have sent a petition to the World Health Organization with over 10,000 signatures asking that Trigeminal Neuralgia be added to the list of new considered Health Topics which means it will be considered for funding and research with the WHO organization. For the awareness day, we now have an awareness color and ribbon and will have buildings and towers and fountains lit up in Teal for awareness. And they've designed photos to use for facebook backgrounds, t-shirts on, posters, mugs, buttons, (with profits being donated to the Facial Pain Research Organization). It's amazing!

So why do we need an awareness day for Trigeminal Neuralgia? You already know about my daily pain... the constant aching in my cheek, teeth, ear... sometimes eye, jaw, nose, lip etc. The stabs and jabs, buzzing, stinging, pinching. It's 24/7 for me, with some days worse than others. Sometimes I function better than others. Sometimes I just can't think, when my eyeball feels like it's going to explode for instance. Other times I am doing ok. But anyway - I feel like I've explained my pain in other posts. You know a lot about it already. And I'll do an update another time (things are basically the same, somewhat worse actually).

 But let me just share two stories I heard just the other night to illustrate why I think awareness is really important.  One was about a person, a grown son of a TN sufferer went to the Dr and saw a nurse practitioner and was telling her about his mother with trigeminal neuralgia and the upcoming awareness day. The NP told him she had never heard of that. Never heard of it. So he explained the symptoms to her. She said she thought that sounded like something someone had made up to get on disability.  Made up?! Ok.

Then, the same night another TN sufferer vented that she was working at her job as an ER nurse and told them about the awareness day coming up on Monday.  These nurses proceeded to make fun of the TN awareness day and the people who come in with the pain of Trigeminal Neuralgia into the emergency room seeking relief. They were making fun of people in excruciating pain. They were laughing about it.  They obviously had not idea what it was really like. They didn't get it. How can people like that even work in a profession where they claim to help heal people?! It's mind boggling.

This is why we need more awareness.  We need more nurses of all kinds to know what it is and to take it seriously. We need Drs who know how to treat it.  We need better treatments that actually work.  We need research. We need people to be aware and to be compassionate. Please just be compassionate. And someday, please, we need a cure.

I can't live everyday of my life in pain.
No one should have to live like this.
And I talk to people and I read these stories and I know my suffering is considered a milder case of this condition, on the milder side at least, which just seems almost laughable considering what I go through at times. It's hard to even comprehend. This pain is no joke.
Please do whatever you can to spread awareness.
Wear some teal and tell someone why.
Tell someone you know about Trigeminal Neuralgia.
Change your facebook profile to a TN photo.
Share a TN photo or infographic.
Look up Trigeminal Neuralgia (classic and atypical) and become more educated.
Be extra compassionate towards someone today.
(bring me cookies?  - kidding.)

You never know what effect you might have.

Thank you.
(and thank you to all of you who have already done any of the above to show your support to me and others who are suffering from this. I can't even really express how much it means to me. Really, thank you so much.)

Check out these links for more info or google search. I regret that I can't link to all the really moving personal stories that have been published in relation to the awareness day. It's amazing:

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