Tuesday, October 8, 2013
Teal for Trigeminal Neuralgia Awareness
Yay for TN awareness day! My sweet daughter really wanted to support me by wearing teal and my husband willingly wore the button I bought for him.:) I tied ribbons on our trees and wore my TN super hero shirt, even though I didn't really leave the house.
Also, through the miracle of the internet and one of the support group pages on facebook, I was able to connect with another trigeminal neuralgia sufferer who lives just one city over from me! I'm not alone! Hallelujah!! She decided to have an honorary dinner of soft foods for TN day (since chewing often causes pain for those with TN) and she invited me over to join her and her family. So nice! It was so great to meet her and talk to her for awhile. She is trying a new experimental physical therapy treatment here developed for TMJ disorder and is having some success so I'm excited to see how that turns out for her. Her TN is complicated by also having lifelong narcolepsy so she can't take the typical medications that I've been trying. It was very interesting comparing symptoms and what we've been through. So many similarities and differences. Everything is so individual. Trigeminal Neuralgia is a beast that likes to take your little brain and just storm through and hack away at it - but everyone gets it hacked at differently. Ugh.
And we all describe our pain and live through our pain the best we can and try to do the best we can and we can't really compare ourselves one to another. It's hard not to. I really struggle with that. I know my pain is not as bad as some and then I still can't figure out why I can't handle it as well as some other people seem to be able to. But then I really don't know how bad their pain is. Perhaps we are just talking about it differently. Perhaps our medications are just affecting us differently. Perhaps my other conditions are affecting me in a way I am not giving myself credit for. Perhaps I should be more patient with myself. Perhaps. I really don't know. I can only do what I can, I guess. And try not to compare in any way. I'm just doing the best I can. Oh, Please don't judge me... and I will try my hardest not to judge myself.