Trigeminal Neuralgia – 3 years later 

Sometimes I get asked about the personal stories I share on my blog and there are a couple of reasons I do this. The first is I am a writer. I was born a writer and will always be a writer. Writing is woven into my heart and soul like my children are. An essence of my being that exists inside, outside and because of me. 

But when I share personal stories about my marriage it is because I have a story to tell. One that probably doesn’t look all that different than someone else’s, but maybe they haven’t uttered it. Or maybe they don’t even know if that is their story until they read mine. But more than anything I share it for me. I grew up thinking love looked a certain way and I tried so hard to push and shove and mold it into that vision and it never worked. I want my baby girls to know what true love looks like not the packaged version the media sells. 

Three years ago I found out my husband had not been telling me the whole truth. I sat in an emergency room with him as he hadn’t eaten for three days, barely had spoke and begged for the pain to end. He had been battling what I believed to be TMJ for four or so years and had in the previous week been to see a neurologist who placed him on loads of meds. But out of no relief and desperation I put him in a car and drove him to an emergency room in one of the worst snow storms our area had seen. 

I had to do all of the talking for him because he couldn’t speak. They immediately hooked him up to an IV drip of pain meds and I explained his years of treatment for TMJ. They all looked baffled and remarked never had they seen TMJ cause this amount of pain. After a few hours and no relief he looked up at me with tears in his eyes and whispered trigeminal Neuralgia and uttered I am sorry. He also gave into all the meds being pumped into his body and fell asleep, but not with out the wincing pains cause every few minutes he would move and scrunch up. The look of which still tears at my heart and informs me it is a bad TN day. Eventually the doctors came in after talking with his new neurologist and gave me the diagnosis.

Trigeminal Neuralgia and I began to hear what I have heard 100 times over, “There isn’t much we can do for that.” We were sent home with meds that didn’t work and the sad pity eyes that we have grown accustomed to. For the next 8 hours I pondered why he hadn’t told me, but a Dr. Google search told me. My guy has always tried to make life easier for me. He is my number one protector and he tried to protect me from this. He couldn’t. 

A restless night of no sleep as I watched the man I love and made a life with look weak, scared and in such pain that he couldn’t function in his life. The kind of pain that makes you retreat into your own mind to cope. The moment that was likely most devastating for me was what I woke up to when I accidentally fell asleep. What I can and will say is I immediately called his neurologist on his emergency line and demanded he be admitted into the hospital and an hour later he was admitted. 

He spent three days there that ended with, “He is going to have to find a way to live with this pain.” This is after three days of a morphine drip he controlled, and 6 different types of meds to control his TN and his pain. He was eating hospital protein shakes and had lost 15 pounds. When the doctor made that statement I didn’t even wait for him to leave. I excused myself and I called our family physician and demanded they get us into a more specialized neurologist immediately. I took him home and a week and a half later we were in that appointment which the doctor demanded a phone to call a specialist in Indy right in front of us  and then two days later we were in Indianapolis with one of the top TN doctors. And a week later his microvascular decompression surgery. 

My guy has atypical trigeminal neuralgia which means nothing works 100% usually. Things can make it manageable, but those things are different for every patient and sometimes they change once you figure them out.  He went into surgically induced remission for about 4 months after the surgery. He remained off his meds for about 6 months. He typically has seasonal remission during warmer months, but did have some flare ups during this spring and summer. He takes three meds daily for it and every winter his pain gets increasingly worse. 

This life isn’t always easy, but it is our life and dare I say our normal now. The surgery, the side effects and the trauma have fundamentally changed who he is. That takes a constant readjustment for my heart and brain. That is hard, but my God do I love this man. He is the strongest most steady thing I have ever had in my life and I love this life we have made. I know God had a plan for us and this. I got to see what I needed from a human in my life because of this and I also fell in love and got to take care of him in a way I never thought I had the ability to do. I thought I was strong before, but I know my heart has super human strength with the capability to love beyond self. 

So am I saying I am glad for TN…no not really…but I am grateful for my path and my love. 

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