Next week is my guy’s doctors appointment with the new neurologist who is working with Dr. Cohen. We both pretty much know the options he will throw on the table. We know he works only in medicines for the treatment of TN. Therefore, we know it is likely the tegretol battle we have both been fighting will be front and center yet again. And people may ask why we are fighting this…Well remember last year? That is why. Once we hit tegretol it was a fast forward button, it was medicinal haze that had to be increased every couple of weeks, it was weekly blood tests to check liver panels and it was a loss to myself and my girls with little gain. With tegretol there are constant and steady increases until your liver says no.
And why do we know that tegretol will be prescribed, because it is the number one drug prescribed for TN and because Cohen already tried to have him back on it. Probably the most disheartening part of the time since I last brought up TN in my blog to today is that his surgical side has gotten worse. Shocks have come back. So next week on the year anniversary of the hardest thing either of us have gone through and we are almost where we left off. Not just that we add in occipital neuralgia to it and that his TN is now bi-lateral.
Those things all scare us for a few reasons. In the networks we have set up we know that many doctors are baffled by TN once it is bilateral and many times patients are treated poorly because the medical community knows little. We also know that pain management doctors are brought in to ease the pain, but then that causes a whole host of other issues. So we sat down and talked about the paths we were willing to cross and the ones we were not. Slowly and steadily we both feel his case is turning into the dreaded, “You are going to have to find a way to live with this pain.”
But we both agree it is hard to live with. It is so hard for him to feel it. I see him deal with it daily. I know he has horribly bad flare days and lately I have seen the shocks that stop him dead in his track. His conversation stops and movements cease. He contorts his face in his TN manner. And we still measure it by where he was last year and no we aren’t there yet. We are where we were where I started to realize it was more than TMJ. The progression seems to be happening more quickly than pre-MVD. He essentially lived with this as “tmj” since I was pregnant with # 3. That is five years before it was so bad that we had to make major decisions. So comparing the progression it is on major fast forward.
But we both agree the hardest part is how lonely it feels to be here. Both for very different reasons and both for the same thing. TN or any chronic illness is hard for others to understand that don’t live it. He is constantly worried about the girls seeing him struggle, his students seeing him struggle so he pushes through. He pretends sometimes he is okay, despite feeling horrible. Add in the meds he takes and he has to push through the fatigue and lack of clarity at times.
Then as his spouse I feel so helpless and when he has a horrible sucky day I feel so alone and it isn’t like I can reach out to anyone that understands it. I was feeling this way yesterday and every single person I came in contact with I was like well I could say it has been a bad flare day for my guy and I feel so helpless. But then I know that makes others uncomfortable cause they don’t know what to say. Usually I will get an “oh” or nothing just sad face. Then I just feel hurt and worried I made them feel bad. So anymore I just smile through it or try and push it away. My children also feel this, but I can’t burden them with it. They need life to feel and be as normal as possible.
That is probably the one thing that has really happened in the last year. We (my children included) have all gotten really good at placing the emotions of TN in a cabinet that we don’t touch and we try and not think about. I have thought about counseling because I have seen manifestations of doing that. However, I really feel like we are in a really healthy place with talking to one another about TN. The girls are all really good about talking to me when needed. I try and make sure my guy is good with talking as well. And for me, I know when to reach out.
We do know of a last ditch effort that we have in our pocket. A doctor that works on cases of TN that are complicated. I am not sure either of us or my guy’s doctors would say he is complicated yet. TN itself is complicated. But his TN is not quite there. It is just good to know there are options.
The hardest part for me though is the emotional side of seeing the man I love change so drastically from his pain or the meds. And that will forever be how I judge his TN. When I see more of the guy I love and married I know that TN is not winning this battle. But when I see more of the TN contortions of the face, or the lack of memory increase because of the meds I know that TN is trying to take over. The difference between this year and last is that I deal with this all much better. It is easier for me to swallow the lump in my throat and pretend all is good.