I saw this sign yesterday " Be Kind Always, you never know what someone else is going through" I thought about how sad that last part was. When we as adults are going through tough times we tend to hide it. Pretend everything is great. Why do we do that?
It's okay, not to be okay!
With that being said, I am not okay. My Family is not okay!
I am hurting.....
Four years ago I was diagnosed with Trigeminal neuralgia. For those of you who don't know, here is a great definition: Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain. You may initially experience short, mild attacks. But trigeminal neuralgia can progress and cause longer, more-frequent bouts of searing pain. Trigeminal neuralgia affects women more often than men, and it's more likely to occur in people who are older than 50. In 2017 I managed the pain of Trigeminal Neuralgia with multiple drugs until we found the one that worked. The side effects of the drugs were awful and my pain never completely went away. Just a few of my triggers were brushing my teeth , showering, eating , bending over and in the winter months the cold would be a killer. I managed almost a year and a half with this pain. I finally decided to have a surgery called Micro vascular Decompression Surgery. Micro vascular Decompression is a surgical procedure to relieve the symptoms (pain, muscle twitching) caused by compression of a nerve by an artery or vein. It provides the longest duration of relief from trigeminal neuralgia pain, and the lowest rate of permanent numbness of the face after surgery. The Surgery and recovery were hard. But nothing prepared me for the tapering of my anticonvulsant meds. To say it was hard is putting it mildly. It honestly pains me to look back on that time. I relied heavily on God and my Husband. I would not be here today, had it not been for my faith and my husband quite literally holding me up. I swore if my Trigeminal Neuralgia came back, I'd never take them again!
My surgery was a success!! I was pain free and living life. I was doing my dream job. I was not only loving it but I was making a living from it. 15 years of hard work, dedication and so many sacrifices to count. I was doing it! With my business partner of course! Life can change in an instant. And it did. It just started with a dull ache on my right side. A quick visit to the dentist showed it to be a cavity. Cavity fixed, problem solved. Or so I thought and hoped. The pain came back after a few days. Dull at First then excruciating . So the process began AGAIN. Went to my PC, my PC prescribed meds, referred me to my neurologist. He ordered an MRI. Upped my drugs. Told me to take a few weeks off from work to get used to them. He was a funny guy! I was right in the middle of my busiest time of the year. Not to mention I was on the drugs I swore I'd never go on again. An MRI was ordered. MRI denied and then approved. A whole long process to just tell me I have Trigeminal Neuralgia on my right side. Even as I write this, I am still in shock that I have this AGAIN and on the opposite side. .I think it's harder the second time around. You know more. You know how hard it's going to be. Not just for you but for your family. I saw such sadness and defeat in their eyes when I told them. We all have been through so much already. I didn't know how we were going to get through this. In the past I had been quiet about my pain, my struggles and the long term lasting effects of this chronic illness. I thought maybe this time around I'd be more open and honest with people about my Trigeminal Neuralgia. When they asked me how I was I'd tell them the truth. I have yet to do this, of course!!!! I have been telling everyone how wonderful I am! Work is great! We are all good at home! I would smile and hug them. As I turn to leave I would fill with sadness. Sadness from pretending. I can't count the number of times I put on a smile! Made a joke and laughed with people, only to turn around in tears from the pain. I'm tired. Tired from the pain, Tired of pretending, and tired of being tired! There is a song by: Matthew West "Truth Be Told". I heard this song a few months into my diagnosis.It gave me insight to how we all pretend Everything is Okay when it isn't. With the support of my family, I have decided to share our story with you. It isn't just my story but Kevin's, Ken's, Bailey's and Dakota's. We, like a lot of Families have been through so much. I hoping this blog will help my family heal and others who are telling everyone that they too "Are Okay" but
are not.
