Who are your allies? Any funny stories on how they help?

I’m early enough in this disorder that it hasn’t worn me down yet, and I cling to the positive bits I can find. So I was thinking today of the people in my life and how they’ve dealt with this, and me.
My mom, by definition is my rock. The first day I had the pain (which was also the 2nd most painful day so far), I came into her kitchen, having come from urgent care with a Correctly guessed diagnosis. Mom looked at me and asked, "why are you crying?"
I whimpered, "I’m in pain."
She rolled her eyes and said, "you don’t know pain until you’ve had shingles."
I couldn’t talk through the crying so I pulled up the Wikipedia entry on TN for her. She instantly changed her attitude and said, “I guess it’s me that doesn’t know pain.” And she gave me a hug.

But, my sister is my biggest advocte. She never tells me to stop whining and always has a, “poor Paige” when I need it. When we’re out and about she loves to explain what’s wrong with me when people question my grimacing. She stands between me and misunderstanding.
Tangy, acidic flavors are one of my triggers, so she’s loves to negotiate with bartenders to find a wine that won’t hurt my face, and makes sure citrus is nowhere near my plate.
If we’re together and someone asks what’s wrong, I gesture to my sis and off she goes with an explanation. It’s pretty fantastic.

How about you guys? Who’s in your corner?

I’m right there with you my MOM is my rock as well. ONE of my three neuralgias was caused by shingles (post herpatic), I have genticulate neuralgia in my ear, and now sub occipital over my eye. She has gone to EVERY single appt I have ever had regarding this nightmare. 4 pcps, 2 neurologists, infectious disease, ENT, neurosurgery, (which I suggest btw its hard to explain or even recall what your dr has said when you feel so bad). She is just “there” to listen, help, empathize, or whatever I need. Keep reading, posting, etc this group is awesome and they have lots of information because the general public is just not familiar withTN. I was at work yesterday and one of the residents asked why I had cotton in my ear and I explained he said casually “I heard that REALLY hurts”. REALLY wow so hang in there :slight_smile: