Thanks so much for your response! Unfortunately, my pain is in my face, I have something called “trigeminal neuralgia” — and without going into detail, it’s a nerve disease just won’t respond to most painkillers. A light breeze or soft touch can set off these lightening-bolt stab attacks on the right side of my face. It’s kind of paralyzing. They don’t know if it’s a cyst or a blood vessel constricting the nerve that gave me this disease. But they know brain surgery might fix it.
Now I also discovered I have gallbladder disease. Ugh.
This piece I wrote was really just the frustration of “keeping going”. Having a rare disease just sucks LOL but so does having a non-rare disease. I have had several diseases flare at once in this past year, but the TN is the most frightening and pretty unpredictable, even though it has triggers. No one can even kiss me on the right side of my face without a risk of the attack.
Online the articles always say “it’s one of the most painful diseases known to man.” Thank God that’s no longer the case. With the drugs, it’s about 50% less painful most of the time. It is no way as complex as cancer or some of the autoimmune diseases out there. It’s not going to take my vision or my ability to walk. But it *can* make it so some days I can only speak a few sentences, and I can’t laugh 0r even yell without causing an attack on other days.
My pain has limits, but I am trying so hard to make it so that my mind and actions don’t. I’m still learning, though, and I’m often breaking down these days. My medicine sometimes also makes me feel slow and exhausted.
The support I have recieved here on Medium and other forums online has been unbelievable. I don’t feel so alone when I get comments like yours!
So thank you, thank you, thank you! You have reached me on one of my “better days” and I can truly feel your empathy. :-) I know that the disease may get worse but the way I cope can get better. I just keep holding on for those days.