If you have read anytime at all you know that my husband suffers from trigeminal neuralgia and maybe you followed us over @ Our TN Journey. His journey at this point has been a long one.
Today is Trigeminal Neuralgia Awareness Day and unlike breast cancer or alzheimer’s there is very little funding, awareness or even acknowledgement of TN. This awareness day is not just about spreading the word and telling the stories. It is about catching the attention of doctor’s, and organizations who can bring a broader awareness to this disease.
The short version of my husband’s story is he lived for years with what we thought was TMJ. He was diagnosed by a local neuro and hadn’t shared the news with me because he didn’t fully understand the diagnosis he received mostly because you don’t really know what TN fully is unless you can see the brain or the meds used to typically treat work for it.
4 days later I took him to the ER in the middle of a snow storm because he was in the fetal position on the floor. He couldn’t eat, he couldn’t talk and he could not function. I received the diagnosis in that ER room. It changed both of our lives forever. A little over a month later he was down in Indianapolis under going surgery to make his life more livable.
He now lives on a daily regiment of multiple epileptic meds and has flare ups. There is a big difference between then and now. He now lives his life in chronic pain that no pain med works for. He manages the disease with the meds he takes and lives daily with the terrible side effects of the meds. But that became his new normal after the surgery so it is our new normal.
This disease is called the suicide disease because people see no relief from the pain. If you don’t believe me go to youtube and look at videos of sufferers flare ups. They are the worst kind of pain.
Every year I post facts, but not this year. This year I will post a picture of how my guy and I looked before his TN was diagnosed.
You can see how the three and a half years since all of this has happened we have aged a lifetime. This isn’t a feel sorry for me post. I don’t need any sympathy. This is the toll of trigeminal neuralgia physically on both of us.
But what I cannot take a picture of is the emotional toll it has taken on my family. It altered every single thing about my life. My guy and I have to work so hard for our girls and for each other because who we were when we met is so very different then who we were after TN.
So if you wonder how you can help. The best thing you can do is love and love hard even when it is not easy and probably especially even when it is not easy. Love will always win.