It’s been a while since I posted. So long, in fact, that I had some relief for about a week and a half towards the beginning of the month. Sadly, for me, the pain has returned full force. I had about two weeks where the pain was minimal, but the last five days the pain has become almost intolerable. I say “almost” because nothing will be any different if I simply say intolerable.

As I have mentioned before, the pain sometimes manifests itself in different parts of my face as well as the depth of pain. Currently, the pain runs from my pallet to the right part of my upper lip straight up the side of my nose to my forehead above my eye. This pain hampers drinking and eating and brushing my teeth and rubbing my nose, speaking – yes, pretty much any movement that involves the right side of my face. Before the pain – because it quite literally is NOT a hurt, it’s pain – landed in its current line of fire, it had extended through the top of my head. This lasted for about two weeks. Washing my hair took a very long time due to the pain.

I’m not complaining, well, a little bit maybe, just documenting my journey through this chronic pain. It is a difficult disease to have, and it’s made more difficult because people look at you and do not see anything physically wrong with you. So, they think it is a small hurt and yeah, they hope you feel better soon. There have been times where I wished I had a t-shirt that explained what Trigeminal Neuralgia is and that a slap is coming. That sounds harsh but to be dismissed is also harsh. The pain starts talking after a while.

It is difficult for family members, even immediate family members, to understand the excruciating pain you are in. I think most people generalize the everyday aches and pains that we all have and therefore do not understand chronic pain. I was that way once too. Until you’ve experienced the pain, you really have no clue. I would like to express to family members of people suffering from Trigeminal Neuralgia that when we do not think you understand, the pain may be talking. When the pain is so great, any sympathy can send you over the edge. You just want to scream that no, you don’t understand! You do not feel the pain that I do! The last thing we want to do is be angry with those we love, but the pain overrides our good judgment at times. It is difficult to watch someone you love suffer and I’ve had my husband accidentally knock me in the head (and not hard) while trying to get comfortable in bed, sending me into waves of pain and shocks that left me almost paralyzed from the pain.

My husband has tried to kiss me goodbye gently and caused me pain. I managed to hide the severity of my pain for a year. When I think back, I wonder how I accomplished that feat. I guess it was pride and as they say, pride goeth before the fall. Enlightenment for my husband came quite by accident. He was working on the houseboat and called to let me know he and the mechanic were drifting in the bayou waiting on a friend to tow them back to the wharf. I was in the middle of a burning pain episode that wouldn’t let up. It was the third one in as many days and there was no way to hide it. When the pain hits in one of these episodes, it becomes impossible to communicate. It feels like someone threw acid on your face and you can feel each and every teeny tiny blood vessel sizzling in your face. You cannot hide these episodes.

The pride went. I lost the ability to hide the pain. I don’t like being incapacitated and that is what happens. You are no longer in control and I have always had control. No one knew when I was happy or sad or hurting or what I was thinking. I guarded every thought and emotion as it was a matter of survival. That was another lifetime ago, part of an abusive relationship where the damage still lingers. I have learned to trust myself and to trust my husband with my pain.

It reminds me of one of the Stations of the Cross that says we must watch our loved one suffer and they must watch us too. It is also hard on those of us who have Trigeminal Neuralgia. We have to let you know of our pain, but we also have to watch those we love suffer because they are powerless to help us. It is a double-edge sword.

I had an appointment with my oncologist before we left and I’ll be meeting with her in a couple of weeks. My blood numbers were stable and she is monitoring to ensure I do not experience any spikes.

This catches you up on my journey and my thoughts. I don’t plan these updates, I choose to write as the thoughts come to me. We just returned from a trip to Colorado and yes, even though I was in pain, I chose to travel. The bumpy roads about did me in, but I felt that I could hurt in a beautiful setting just as easy as I could at home, and I’m glad we went. The Rocky Mountains were beautiful. I hope you stick around as I’ll be sharing pictures and stories of our travels.