Missing LiveJournal, All I Want For Christmas, And The Bastard Nerve I Never Wanted

[lilystcyr]

It is Christmas Eve morning about 9:30 AM, and I haven't gone to sleep yet. I have found that everything on the planet is pulling me away from live journal. I really don't want that to happen at all. I used to write in this journal almost every day at one time. But, someone from high school found me and sucked me over to "Facebook" and I ended

Comments

[flyswatter]

Oh man, I had a drawing professor in college who had that. I'm so very sorry.

[lilystcyr]

Wow, it's so rare and misdiagnosed that most don't know what it is, let alone know someone with it. I feel bad for your professor, I hope he/she found something to help.
Thanks for writing :)

[flyswatter]

He's long gone now, but he was tortured tremendously when he was alive and had to take off a lot from his profession.

This was around 1980 or '81. The operation was grueling but was ultimately successful.

[lilystcyr]

Hearing that brings tears to my eyes... It's hard now to find the correct medications and surgeries. I can't imagine how hard it was back then. I've had 2 surgeries and right now I take a very high dose of anti-seizure meds that make the pain tolerable. I hate to hear of anyone having this.

I know it's been a long time, but do you remember the surgery he had? Maybe "Gamma Knife"? You say that the surgery was successful, did it stop the pain for him? I certainly hope he found relief before he passed away.

Thanks again for writing!

[larryv]

Good luck! Happy Merry to you to.

[lilystcyr]

Thanks Larry! Geeze, you've been watching me (from afar) go through this since the beginning. I can't believe myself that it's been almost 5 years since it started. I don't talk/write about it much since I started taking meds that keep it tolerable most of the time. Plus, I hate being a whiny baby :P
Hope you had a wonderful Hanukkah!

[lilystcyr]

Thanks Wook, the best hugger in the universe :P. Damn, I think you and I have been LJ friends since I first got symptoms of TN. *hugs wookie*

[lilystcyr]

Yeah, I remember you being around back then giving me tons of hugs... Oh goodness the posts before they found meds to help me tolerate this were CRAZY!! I still have days like that, but haven't written much about it, back then I felt like that every day. Now, I have "moderate" pain everyday and "severe" just some days. I just can't believe that it's been close to 5 years since this all started. Hell, I'm surprised I didn't commit suicide back then... unfortunately so many with this do. With help of the internet I'm hoping more people are getting diagnosed faster and finding support. I'm sure people are, but I doubt TN will lose it's nickname of "The Suicide Disease" anytime soon. I'm thankful for the meds I found... I wish I could help more people with TN and help get them to the right doctors and take the right medications. No one deserves this. I'm getting long winded, haha! Love ya Wook! Hope you are enjoying the holidays :) *big hugs*

Hey Lady

[redwillowkitty]

Wow. I hope this pain ends for you soon. I also hope you have a wonderful Xmas/Yule etc and a very very Happy and Healthy New Year. HUGS Jess

Re: Hey Lady

[lilystcyr]

Hey Jess! I have been wanting to call you! Lots to chat about. I'm sorry. The doctor I'm going to see was a partner of the doctor that helped Shawn's dad. I'm going to try this doc first because the drive to the other is like 13 hours. I'll tell you all about it on the phone.
On yeah, to break the bet... you were right, my birthday is December 6th. Let's try to talk this coming week, I am not going to lose touch with you again (promise). I hope you are enjoying the holidays!! I miss you *hugs*

Re: Hey Lady

[redwillowkitty]

Hey no problem. Now would be a bad time to call as I don't have a voice and am sick. Feel free to email however :) xoxo Jess

[rachraff]

Happy whatever to you too!

[lilystcyr]

Haha! Crazy bald man stalker! I want to go with you, I had a blast in London.