My first blog

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1

Hey guys this is my first time blogging... ever, so excuse me if I rant. :)

I'm really new to this site but I feel so much better now that I have people that know how I'm feeling. It's hard because I feel like I've lost so much. This stupid disorder has plagued me throughout my entire college career. And now continuing on into my adult life. I'm terrified I'm going to have this for the rest of my life, be on meds for forever. In college, I had to be so careful what I did when I was with my friends. I couldn't hang out with them like everyone else, I had to always have an arsenal of prescriptions with me and I had to coach the people I was with on what to do if something happened. I hated having to tell my professors at the beginning of the semester that I might be out of school a bit because if I had an attack and couldn't come to class. Despite it all I graduated with my degree in 3 and 1/2 years just to get the heck out of there. Now I work full time at a hospital which is good because I enjoy it and also because if I have an attack at work they know to take me straight downstairs to the ER and shoot me up with some pain medication. My coworkers know when I had a bad night or am having a bad day with the TN because I won't wear any makeup, my hair will be up in a bun and I won't wear any jewelry. I know it's rare to have TN when you're young but is there anyone out there that is young and dealing with it? I'd really be curious to see how they cope with it.

I've blamed everyone for this stupid thing but I know that's not the answer either. I'm getting MVD in two weeks (January 6th) I'm so excited to maybe put an end to this thing but at the same time I'm so scared. I've woken up out of anesthesia before because of my TN and one surgery they couldn't control my pain level afterwards so I was just screaming in the recovery room.

I've lost friends and a fiance because of this thing. And I just pray that the MVD works so that I don't lose anything else. I really get why they call it the "suicide's disease" because not only is the pain excruciating, but you lose your life. I, thankfully, have my family as a great support system around me. But I can't even imagine going through this alone. That's what's great about a site like this... it gives you support from people who actually know

Thanks for listening all. Hope today is a pain free day for everyone.

*Amy

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Hi Amy

So sorry to hear all you been through so far with TN.

I only got diagonised last year when i was 24 with this horrible thing. I would say that living day by day and finding sites like this one has helped me so far. I've found more info on this site about TN than i have by going to different doctors. I ended up telling them how much they could increase my meds to lol.

Also, like yourself, i have lost friends along the way and in a way, that was one of the hardest things to cope with. Especially at a young age. I'm just glad we both have supportive families.

I've been lucky enough that i found meds that help me early on. Altho i still get bad days and the thought of having a flare up is never far from my thoughts.

I HATE TN so much as it has affected my life so much but i have a one year old daughter who i love too much to let this condition rule my life (easier said than done sometimes lol ) so i will try and cope however i can.

I really hope the your MVD helps you be pain free so you can get back to living your life. The date your having it is my birthay so its a lucky date lol.

Take care and let us know how you got on

Una x

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Amy,

You and Una are very young to have to suffer with TN. I was 50 when I got it. But having a support group with others who understand the pain is so helpful. I do have wonderful friends and family but they really do not understand the pain. I hope we can help you. And I will pray your MVD takes away all your TN pain.

Liz

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Amy.... you are a very strong person. Even though you have this desease you have accomplished plenty. You should be proud! Good luck with the surgery. Keep us informed.

rodney