Decisions that can't be undone: focusing on good things. Part 3

The blame game makes it difficult for us to move forward. It's unhealthy, physically, mentally, and emotionally. We cannot turn back time, cannot undo our decisions, cannot snap our fingers and make the situation go away.

The key to having a good life in spite of the pain is to recognize and focus on good things. I'm continually amazed by my friends who have trigeminal neuralgia and how well they cope. Most of them have had procedures but still have pain. And my friends who have neuropathic facial pain also give me a reason to smile. Many of them don't know the cause of their pain, but they manage as best as they can and find pleasure in their lives.

Happiness can be found if we look for it. Most days, we understand that things can be worse, and some days, it takes every ounce of strength we have just to endure the pain.

Although I struggle with difficulties related to my jaw joint, I remember the terrible days of trigeminal neuralgia, the electrocution-type pains, the inability to brush my teeth, to wash my face, to speak, to walk out of the house, or to sit under a ceiling fan. The discomfort I feel now cannot compare to the suffering related to TN.

One of the challenges that people who have trigeminal neuralgia face is that others don't understand the intensity of the pain, which is believed to be the worst pain known to humans. It's discouraging and isolating, but we can support one another and know what the other person is experiencing. We can offer prayers, write emails, become friends on Facebook, or tweet with one another. You may also leave comments here to comfort and support individuals who read my blog.

Those of us who have been involved with supporting others have held the hands of hundreds, maybe thousands, of people we have never touched. We help one another overcome the fear of the pain.

Life may never return to what it was before we had the pain, but we can continue to find its beauty. One of my favorite poems is Wordsworth's "Ode: Intimations of Immortality." I fell in love with this passage when I was a teenager, not old enough to understand how important it's message is. But today, I comprehend it much more fully.

Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind...


We're not as young as we once were, but we have more wisdom, more compassion, and more endurance. Let's find strength, not only in what remains behind but also in what lies ahead.

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A medical decision I'd like to undo

If you live with facial pain, chances are you know about regret. Somewhere along our journey, we find ourselves looking back, wishing we had done something differently. A few years ago, I opened correspondence from someone who had the misfortune of encountering a physician with whom she was angry. The lady with facial pain expressed her unbridled rage.


She shared her story, saying that the neurosurgeon had performed a procedure and had not cautioned her about the possibility of anesthesia dolorosa.  The treatment had not worked, and she was left with  constant facial pain and numbness as well as other unpleasant side effects. She told us she had contacted the physician, but he would not acknowledge the failed procedure or validate her feelings.

I understand her anger. When trigeminal neuralgia or neuropathic facial pain consumes a person's life, he or she becomes desperate for relief. We look for a way to stop the pain, a chance to live a normal life again. What we may not know is this: the very procedure that relieves someone else's pain could make our pain worse. Medications or treatments that help one person can be totally effective for another person. It doesn't make sense, but it's a reality. We can ask all the right questions and receive excellent feedback, but we have no guarantee that a procedure is going to be successful.

When I had terrible electrocution-type pains from trigeminal neuralgia, some of my practitioners encouraged me to seek treatment for my jaw. They believed some of my pain could be relieved. I moved forward with something called "functional jaw orthotics" and went across the country to receive care from an expert. In the course of two years, I made many 3000 mile round trips.

Our insurance did not cover the treatment, and my husband and I had to pay for my flights, lodging, and meals. We thought it would be worth it, but we were wrong.

At first, my new bite felt great. But a few years after the TMJ/TMD treatment was complete, I started having a type of facial pain that was new to me. It went down my neck and into my shoulder, and I thought the pain originated from my sternocleidomastoid muscle. After all it wasn't TN type pain, and I believed my jaw joint was fixed. The situation was confusing.

The pain grew worse, especially when I went back to work. My jaw locked shut often. Pain spread deep into and around my ear.  My teeth, which had always been straight, had become crooked. (My two front teeth are getting pushed back and the two teeth on either side are overlapping them, as if they are pushing them back. Several of my lower teeth are crooked. When I run my finger over the bottom teeth, they are in an inverted "V.")

Although my bite was problematic before the functional jaw orthopedics, my teeth had always been straight. I had never worn braces. Part of the treatment for my jaw joint was to put crowns on eight of my teeth. Now I have a mouth that is crowded with crooked teeth, and my bite is still problematic.

About eighteen months ago, my jaw joint practitioner called me when he received a copy of an evaluation written by an orofacial pain specialist. A few months ago, I asked him to refund the money I paid him for treatment. I didn't ask for expenses, but I hoped he would refund what I had paid him.  I'd like to move forward with orthodontia and perhaps I can have the crowns replaced. But my request for a refund has been denied, and the practitioner states that he stands behind his work. He has done nothing wrong, he says.

Have I been angry with him? Yes. But it doesn't help me. Anger bites like a rattle snake, releasing its poison into us, it's venom penetrating our mind, body, and spirit.  Unless we forgive the person who has performed the offending procedure, we cannot move forward.

We must forgive for our own benefit. It doesn't matter if they don't care about us, believe us, or acknowledge our current need. The practitioner is part of our past and not part of our future, even if we continue to bear pain resulting form his or her work.

Lack of forgiveness results in bitterness. Have you ever known someone who is bitter? It's not an attractive trait. Bitter is the last thing I want to be.

The advice that Jesus gave about forgiveness can help us; forgive the offender seventy times seven times, He said. (Matthew 18:21-23). Even as He bore terrible pain during His crucifixion, Jesus forgave. But forgiveness isn't easy, and it can take a while to achieve it. I concentrate on good things, like the fact that TN's electrocution-type pains have been gone six years.

I choose to forgive the person who ignores my pleas for help. My forgiveness doesn't make him right, but it helps me. He thought he was helping me. We've all made mistakes. I've hurt people, and I'm not proud of it. I hope for forgiveness when I am wrong, and because of this hope, I forgive.

If you've made a medical decision you regret, please read part one of this entry: http://kathytaylortrigeminalneuralgia.blogspot.com/2010/10/decisions-we-cannot-undo.html

Now tell me about you. Do you want to forgive someone? 


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Trigeminal neuralgia, orofacial pain, and anxiety

If you have trigeminal neuralgia, neuropathic or atypical face pain, or orofacial pain, chances are that you have experienced anxiety. Some people think of anxiety as nervousness or a feeling of panic. It can escalate when negative thoughts or "what ifs" become frequent or won't go away. It's important to mention these feelings to your physician or medical practitioner.



Face pain can storm like a thundercloud, bringing "what ifs" into our lives. It's really important to recognize anxiety when it begins to manifest itself. There are a number of things that can be done.

Your physician may want to prescribe an anti-anxiety medication. If you are hesitant to take medication for anxiety, you may want to see a counselor who can help you with cognitive behavioral therapy (CBT). CBT works for many individuals because it helps them train their thought patterns and does not introduce more medication into the body.

We hear a lot about "natural" approaches to illness. Some people get relief through massage or other types of integrative medical techniques. Herbal remedies are also sometimes helpful. Sometimes seeing an upper cervical chiropractor (UCC) can also help with anxiety as well as the face pain itself.

Addressing anxiety is important. These feelings sends signals to the brain, and they can actually trigger more pain. Anxiety is common to people with facial pain. You're not alone in this journey. God bless you.

Flossing

People with neuropathic facial pain, trigeminal neuralgia, and jaw joint issues such as TMJ know how difficult it can be to floss or to brush one's teeth. When I think of flossing or going to the dentist, I have a lot of anxiety. But when I look at my gums, I have even more.

There are so many days when I absolutely cannot floss. In fact, they are most days. I also have days when I cannot brush my teeth. I struggle with those days. There is something about the mechanism of moving my jaw around to floss that causes terrible pain. So on my good days, I floss. Flossing aggravates the situation and often causes pain, pain, pain. Have I said pain enough? Here's the good news: I've been able to floss twice this week.

I am thankful for mouthwash and for toothpastes that help fight bacteria yet cause less stinging. Most of all, I am thankful for God's grace. He sees me through the difficult times and gives me rest when I feel that I cannot tolerate another day of being in this situation. He gives me hope for tomorrow. I remember years ago, experiencing the pain of trigeminal neuralgia: I did not want to see the next day. It was during those desperate days that I realized that Jesus was my best friend. I had been a Christian most of my life, but I had never realized how desperately I needed God.

Most of all, I am thankful for the rest and peace that I have at this point in my life. I'm not afraid. I'm content. I'm resting in God's wonderful love.