Processing and Processing. That is all this disease is. It has been bad lately. The meds are crap. They take the edge off. He saw the doctor again and they went over scenarios. There are a few. At this point surgery is an option. But it is his option. It is a matter of if, when and how. It is a whole lot of what ifs on our part. There is never a guarantee. Considering we are over a year out and we are talking about it again is proof of that.
But can we do it again? It is scary. But the thought of his summer three month typical remission being followed by a cold fall with incessant pain and a quick surgery in hopes of fixing things maybe is hard to think about. As well, usually by now remission has started to set in and it hasn’t. I am truly hoping it is the chaos that is our lives right now.
TN isn’t caused by stress, but it is definitely aggravated by it.We just both have incredibly busy lives right now and I am praying and hoping that in three weeks this will all be a blur. That is best case. Obviously worst case is that it doesn’t get better and stays this way.
We do know he is about topped out at his med. He risks permanent damage to his liver and brain should his dosage need to go up more. He does have one other med as an option but it is not really all that hopeful because it is in the family of drugs that provided absolutely no relief.
He scheduled an appointment for the fall but we will be talking seriously this summer about options. A year ago we kinda had this plan figured out but it didn’t exactly look like it is panning out. That is okay. But scary. I am fearful of him remaining on the meds and waiting it all out and him ending up on a liquid diet and me heart broken watching him in constant pain. But I am also afraid of another attempt of a possibly successful or failed surgery.
We do have another option but it is extremely complicated and hard to even wrap our brains around. And honestly it is scary to think of it as a possibility because neither of us can see how it would work out. Sometimes we don’t even talk about it because we don’t know the hows.
So you can see as with anything with trigeminal neuralgia there is no simple and easy answer. And despite the constant reminder from the neuro we do understand that this disease is not a life threatening one . We have always understood it as such. We are grateful for it too. But sentence here definitely feels like a life one.
Our daily life is good. He copes well and we have found a new normal that involves TN. He hides a lot of his pain to avoid causing any of us emotional pain. We are just praying really hard right now his usual remission would kick in. It is easier to think about and talk about options when he isn’t in pain and the meds aren’t kicking his butt.
But on a happy note in about three weeks we celebrate 16 years of marriage and I consider myself one of the luckiest. In February we celebrated 19 years since we had our first date. And every single year gets better and better. My guy has shown me what family means and what true and unconditional love feels like and for that I am forever blessed. Even on his worst day he is still far better than my best.
That is why love will win this battle. TN feels like a mistress to me sometimes, but never ever will I let it disrupt my marriage or the love I hold so dear. It is just a part of our story and I hope one day my daughters will be proud of the love and dedication we have had for one another. I hope it is a shining example of of real love that endures and show them that love does win!