Hi friends,
I haven't been writing much lately becuase I have been isolating and not talking about things, in order to not have to think about them. Tina called me, and kinda made me take a second look at it, and recommended that I talk to you all.
When my NS put the leads in for the permanent PNS, he put them in a different place than the trial. I don't know why. But because of this, the thing that was working, the effect that I was most happy with - the ability to stop the pain in my nose and to wear glasses without extreme discomfort, no longer works. Furthermore, the stim only seems to interrupt the lightest pain. It only irritates the moderate to severe pain. And the lower one makes my teeth buzz really uncomfortably. I am still trying to work with it to see how I can best optimize what I do have from it, and to try different things in the hope that things will change.
And silly me, I keep thinking about my NS's feelings instead of my own. Like I don't want to let him down. Silly, Right? I think it is so I don't have to focus on my own difficult feelings. So Tina finally pushed me to call them and request a post-op, becuase they never set one up. I am on the process of doing that.
I have gone through all of the things that I have gone through with a fairly stiff upper lip, but I am cracking a bit lately. I sat and just cried last night - I'm tired of trying, you know? I've been through so many surgeries. And nothing has worked. And I am afraid that my medical team is just going to abandone me as hopeless. This is just the fear talking, I think. I have to get back in there and talk to him, and ask him why he changed it so much. Maybe with all the complex stuff he just forgot where it had been, but I told him I would put a dot where the lower one terminated beside my nose, and he went a full 3/8" lower than that dot.
So anyway, this is my story to date, and as you can tell, I am pretty morose. And I don't like to complain when I am in this kind of mood, because I was raised to buck it up and not to. So this is all very hard for me to say, and it embarrasses me to do so.
Any advice would be greatly appreciated.
Thanks all,
Lily