Yesterday was my 6 year anniversary of my Constant ATN/idiopathic facial pain. In a lot of ways I feel more lost and hopeless than I did shortly after diagnosis.
Back when I finally got diagnosed and was trying medications I had a lot of hope, I was struggling with trauma and acceptance, but I believed strongly that things would improve. And they did. I found medications that helped lower pain levels, mainly Nortriptyline. I met and married my husband just before my 2 year pain-iversary. I felt like I was rebuilding a new adjusted life. I was excitedly jumping into part time jobs with hope that this would be a good fit, and I could do it.
Now, at 6 years of face pain, my medications are beginning to be less effective, and are possibly having a negative effect on my heart. I have tried 11 medications, most of which did not work or had intolerable effects, I tried nerve blocks, cannabis products, Kratom and I was talked into trying Gamma Knife next month even though I have been heavily resistant to trying any destructive procedures. I have no other options left.
I have had 8 part time jobs in 5.5 years. And none of them have met our financial needs and been sustainable with my constant pain. I’ve had to swallow my pride and quit every job because of poor health. Now I fear starting the next one. I feel like a lier in interviews, saying I plan to work for at least 2 years when I know my body will only hold out for about 6-8 months. If I were healthy I would work for the full 2 years, but I am not.
My pain is spreading over time, as my treatments become less effective the pains grow in size and variety. I now have more stabbing, more sensitivity, and I got the first electric type zaps this year. It makes me wonder if I need to add type 1 pain to my list of the horrible raw burned flesh, ice cream teeth, and bone crushing pains I started with.
So basically as my treatment options stretch thin, and my hope for a brighter future gets foggy and confused my pain is getting worse.
I don’t know where to go from here. I hope the Gamma knife does some good, but I have 50/50 odds at best. So I can’t bear to rely on that.
I’m 30, butI can’t imagine what 35 will look like without having a literal panic attack. It’s not fair, I know it’s not for anyone, but I’m still mad about it.
I probably seem small and pathetic to you 20+ fighters out there, but right now the last 6 years feel simultaneously like an eternity and like I blinked and it rushed by. I’m trying to figure out how to live in the moment, b it that is so hard when this moment is agony and the future hangs looming with likely worse things.
Thanks for being a place where I can reach out and let my feelings go into the internet void.