“Armed with my positive attitude and inherent stubborn nature, I keep my mind focused and my life moving forward. I stop to rest, pout and even cry sometimes, but always, I get back up. Life is giving me this challenge and I will plow through it, out of breath with my heart racing if I have to.”
― Amy B. Scher
I get so tired of that word. I say it all the time. The meaning ends up lost and I feel like again just means a continuance of what is. Do I use again when I sit in the ER with him? Or do I use again when we check into hospital over night to control the pain? Or do I say again when it full fledged comes back? Or do I use again to describe this time in our lives? Or can I just get over the word again and just now?
And tell me how do I deal with the anger and worry that again creates? Or better yet the tears of again. I never want him to hold this burden on his own and I never want him to fight alone. But again there is something to worry about. Again we found a relatively calm place for about two weeks. And then again happened. Again or the continuance of I am not sure. But we are here.
And yes that again doesn’t include the debilitating shocks, but again does include another med and more worry of a return and continued doctor appointments. He had an appointment yesterday and admitted to the doctor that he had been feeling pain again. A pain he didn’t tell me about. But a pain I was picking up on. He does this facial thing when he struggles. It is a contortion of some sort with his mouth and hands and face. He had been doing it again. So much so I asked him to stop because it hurt me when he did it because I was scared the pains were back again. He laughed it off as a habit to not worry me. But after his appointment he says it has kinda been bugging me again.
Since I don’t have TN it is hard for me to envision or even understand what kind of pain this is. So excuse me and my ridiculous mantra again. It is his story. I am telling my story, not his. You get the drift, again? There is a web like pain/annoyance/ache/tenderness that is more subtle that centers around that nerve center that the trigeminal nerve shoots out of. We all have that center. It is right above your jaw joint and to the side of your ear. It sends out messages to the nerves. It seems to be from his doctor’s explanation and my own understanding that it is attempting to send out messages falsely. It is doing this repeatedly and causing issues. At least this is our hope. The other alternative puts us there again. I am not really sure what there is right now, but I know I don’t want to go there.
My hope and prayer is that these are still misfires. Misfires are a side effect of any nerve surgery and are the nerves way of trying to heal and takes longer and is more complicated the longer a person lives with nerve damages. However, we are 6 months out and the misfires are typically done by this point, but again it isn’t unheard of. Yes healing can and should still be taking place. So again he was placed on a med believed to help two fold with pain and nerve misfires. Again we wait. Again we hope this is it. The thing that makes his post MVD life better.
The good news is he isn’t having the horrible shocking pains again. He had a few after surgery, but thankfully they have remained quiet and non-existent. By his explanation of this pain or whatever we want to call it. It is the usual build up to the shocks. He had it before the surgery and it has returned. It isn’t painful like the shocks, it is the anxiety builder sensation that let him know that a shock is coming. Again, you can see why this would be a struggle to someone with TN. Because ultimately you are fearful that that shock is coming. Thank the good Lord it never does. The positive side of this is that the shock is not coming. That is what the MVD was meant to stop.
Can you see why I struggle with again? My life has become an again. And some of that is my own choosing. I struggle to move on because we don’t feel passed this hurdle quite yet. And maybe we will get there because I feel it happening bit by bit everyday. Everyday our new normal feels a little more normal. I hope one day that TN will not rule my thoughts and that dealing with how it took over our lives will become easier.