I haven’t talked about this before I dont like when people feel sorry for me. However I woke up not feeling so great today, and can’t seem to think of anything else. Being a mom is the hardest job in the world. Being a mom at the whim of a chronic illness is even harder.
In May I was diagnosed with a rare brain condition called Trigeminal Neurulgia, or TN for short. Now if you have no idea what TN is don’t worry you’re not alone. Basically its an over active Trigeminal Neve caused by a compression,growth, or some other irritation in the brainstem. It causes the Nerve to fire pain signals to the face even though there is no physical trauma. Which means I can be standing next to you completely fine, and suddenly feel as though I’ve been shot in the face, or bit down on an electric fence. We call these attacks, and they come randomly. Most of the time when you least expect them.
It interferes with my childrens lives a lot, and I feel incredibly guilty for that. Attacks are triggered by normal every day things like washing my face, brushing my hair, doing my make-up, eating, the wind blowing, and the list goes on an on. One of these attacks can last anywhere from seconds, to hours, to days. Every trip to the park is quite literally a game of Russian Roulette for me.
Treatment options are quite scarce as pain medications are completely ineffective. The few medications that are effective often dont work for long. Short of brain surgery there’s really not much I can do, and unfortunately thats a last resort. Weird isn’t it? That someone would wish for brain surgery.
The hardest part for me is the unknown I’m a planner. Seriously I have a very detailed plan for six months ahead at any given time. Living with this disease seldom do things go as planned. I’ve really had to learn that atleast for now. All I can do is take it one minute at a time.