My story started on a Monday morning like every other morning, except this time, this time it was different. I was jolted awake with the feeling of someone hitting me in the back of my head with a baseball bat. The pain was excruciating, and this was a feeling I have never experienced. Hoping this was a dream, I drifted off back to sleep; here came another crack, over and over again. Keep in mind we have a large family, which needs two incomes, so calling off work was not an option. Knowing I had to go to work, I rolled out of bed and crawled to the bathroom and got ready for work. It was too bad; my job wasn't in a dark, quiet room. I, however, worked in our local elementary school as a teacher's assistant with second graders. I remember walking down the halls touching the back of my head, holding my head expecting to see blood, wanting to see blood. At least if I saw blood, it meant I wasn't going crazy. Can you imagine telling hundreds of students not to be loud? Use your inside voice! Because we all know they don't have one. Ha!! Funny, right?! I took as much ibuprofen as possible, and nothing would touch the pain.
These "hits" to the head went on for two weeks. My husband and I were not understanding what was happening or why. We kept going through the past two weeks, trying to come up with a reason for the pain. Did I had hit my head somehow? Did I fall? We came up empty-handed. Over those two weeks, the problem magnified and had moved to seven different areas on my head.
The first was the back of the head. Second were the sides of my head. Imagine someone walking up from behind using vise scripts on the sides of your head. I swear it felt like they were cranking down so hard I could visually see my skull crushing in.
Third, well, that was the top of my head. My skin felt like I had hot coal on it, melting my skull like wax. A burning I never knew existed. The fourth was my hair. Every hair follicle was like needles were being jammed into my head. If the wind blew, I wanted to cry. Taking a shower, washing and blow-drying my hair I took for granted. Now I choose to wash my hair every four days. I thank God for dry shampoo! Lol, A shower cap is my new best friend. Fifth, my eye sockets hurt so badly it's like having a red hot ice poker stabbing me through the eyes and out the back of my head, which of course, led to my vision becoming blurry.
The sixth location was my entire face. Every bone in my face was being crushed — finally, the seventh spot. I have never been struck with lightning, but this is what I imagine it feels like. These strikes start inside the head and shoot out of my skull. They are always out of the blue. I will drop me to the ground screaming.
Eating wasn't an option, and laying down or sleeping didn't exist either. My poor family got used to hearing turn that down, and it's too loud. Turn the lights off; it's too bright. I can't go outside, and it's too windy. I'm sorry, but I can't make it to your basketball game, I'm sorry I can't make dinner, I'm sorry, but can you go pick up your brother, I can't drive? I'm sorry turned into the "go-to" phrase. My life, as I knew it had forever changed. My relationships with friends and family had forever changed. My faith in God had wavered, but God's faith in me hadn't. He provided me with a wonderful neurologist who has been very patient, kind, and understanding.
It took a little bit for her to diagnose me with Bilateral Occipital Neuralgia. Since the vast majority of those who have BON or ON is due to head trauma, whiplash from a car accident, actually hit in the head. Mine wasn't any of these. I just opened my eyes to my new life, our new life. We decided the smartest thing to do was educate ourselves. After weeks and months of trying different medications, I was directed to my surgeon. Where we learned this disorder would never go away, it gets worse over time. That is known as the "Suicide Disease."
He explained my options, but hers is the kicker; he wouldn't do two of the procedures due to the pain magnifying 1,000% after a year, and that the suicide rate goes significantly higher. The other approach I would Texas oil money to pay for in my insurance wouldn't approve it. Not sure about you, but we most definitely do not have that kind of money! It was at this exact moment in my life when I felt I couldn't go on; why should my life was barley livable now. I sat and covered my face and cried (which with this disorder, you will do anything NOT to cry. Too much pressure in your head). I cried for my kids, cried for my husband, my parents, friends, and for others who are living this nightmare and for those who said "no more."
I remember looking at my doctor and asked with tears spilling over rolling down my face feeling ultimately defeated. Is this all I have left? Is this what my life is going to be like for now on? Thankfully, he said those beautiful four words…There is a study! Those words four words were everything I needed to hear. I had hope again. Hope that one day I might be able to laugh again, cook, bake again, and maybe be ME again!
These were taken the day after my procedure on June 22, 2018.
This is exactly one year later, June 22, 2019. I decided to celebrate my one year anniversary with a tattoo. And I live it PROUD!
If you would like to see more of my story, check out my Facebook page @warriorstrong622.