Hi Nicole,
I don't have TN but I understand your frustration over the quality of life issue and finding a place amongst peers who you feel are no longer on the same page as you...

I was 15 when I was diagnosed with myasthenia gravis. Most of the kids at school thought I was faking an illness. Hurtful isn't it? The lack of understanding and empathy is tough to handle. Well, I went on to graduate with a 4 yr honour degree and a Master's and met a few really good friends on the way. Things were good for awhile and my symptoms were well-managed by one drug.

THEN after 15 years of having a reasonable remission, I went into relapse, thanks to some major stress at work. I then found myself having to deal with a new reality of living daily life. While my friends are busy planning their lives in the 'normal' way, I found my concerns so completely in the other direction and was left with this overwhelming feeling of "now how do I live??". Suddenly I found myself having to take about 24 pills a day and having to rest days before going out, if even to a movie. Most of my current friends have adjusted to the new me but every now and then, I know deep down inside me that they just don't understand what it's like to be sick. The only people that really understand are other sick people -- and thank goodness for these boards!!

My career is very important to me and I've now been on long-term disability for 4 years. This is the hardest thing for me to deal with. I can take the pills, the biweekly IV treatments and the needed rest time, but not working is really difficult on the mental state.

I doubt if I made you feel any better other than letting you know that I know exactly how you feel.