Thursday, November 25, 2010

Avoiding stress today: a message from Kathy

Thanksgiving is my favorite holiday, the favorite holiday for many. Family, friends, food: it's all good. But sometimes stress creeps in when we least expect it.

Let's think about facial pain, trigeminal neuralgia and the more elusive neuropathic (or aytpical) facial pain. Most people don't understand it, so remember this: in your home or group of gathered individuals, you are the facial pain expert. You've experienced it, almost disbelieved it, and you've researched it. It doesn't mean you totally understand it, but who does? You are still the expert in your little group.

If someone questions you today, asks as though you are trying to get attention, take shortcuts, make excuses, or get out of work, what can you do?

Let's consider a basic premise: you are the facial pain expert in your group. You have more knowledge and a better understanding of facial pain. For a moment, let's try to put ourselves in the shoes of those who don't have trigeminal neuralgia or neuropathic facial pain. Most of us remember, at some time, a person telling us about having an odd pain that seemed incredulous. I remember doubting someone's sanity when she described her rare, invisible disability to me. Maybe part of it was that there was no label for it, but I'm not sure I would have believed it if a diagnosis had been discussed. We don't want to entertain the idea that such things are possible.

Speaking of doubts, maybe you have a jaw joint problem? I remember thinking TMJD was just a nuisance that one might have to endure. I had no idea how debilitating the pain could be. Now I know. I understand.

Take solace today in knowing you have become a better person because of your pain. Resist the pressure to do more than you can. If pain is triggered by talking, remember to take some time out. Put in a movie or turn on the parade. Explain you need to give yourself some rest time, and do exactly that. Dig deep into your faith and your personal strength. Don't be afraid to curl up in another room with the family dog or cat or maybe open a book or magazine.

Taking care of yourself is important. You don't have succumb to the pressure of attending black Friday sales at 4:00 a.m. And you can have a wonderful Thanksgiving in spite of others' insensitivity to your needs. It's about giving thanks, not pleasing everyone. Remember this: I believe you. I hope you have a good day and a wonderful Thanksgiving.

Have you visited my website?

Tuesday, November 23, 2010

Thank you

Thank you for staying in touch. Your emails, comments, tweets, and posts mean so much to me. Happy Thanksgiving. I am thankful for you.

Thursday, November 18, 2010

Tough turkey? An easy Thanksgiving and a tender bird

I remember grinding up turkey breast in a food processor and then bledning it in with a mashed potatoes so it wouldn't look unappetizing. People who have trigeminal neuralgia, glossopharyngeal neuralgia, or jaw joint problems.

There's a way to make Thanksgiving easier for people who have difficulty chewing. To brine a turkey makes it easier to chew and juicier, too. You can find plenty of brine recipes and instructions how to do it on the web. I like a mixture we get from Williams-Sonoma. Brining usually involves an overnight process and bags made especially for this purpose.  However, last Christmas I tried a new method, a dry brine.

This method is much simpler, and it leaves the turkey succulent. It's applied to turkey, chicken, or pork a few hours before time to cook; I leave mine on overnight. No boiling, brining bags, or additional liquids are required. The results are great!

If you need to keep things simple, you can also buy cornbread dressing mix (oh so easy to chew) from Williams-Somoma. I bought the gravy mix, too. Dressing mixes are also available in the store.

Usually I make a broth from the turkey and use some brown rice flour to cut down on the amount of gluten. It makes a light "gravy," allowing the natural flavors to make their statement.

I'll be putting some personal touches on the meal, making cranberry relish from fresh cranberries and making low-fat potatoes with protein. You can find that recipe here. And if you'd like to find other easy or no-chew recipes, just use the Google search bar underneath the title of my blog.

My son-in-law, who is quite the chef, will be bringing some veggies and other goodies. I'll eat more than I should, but my jaw won't be pained by it. It's just one more thing to be thankful for.

Happy Thanksgiving.

Have you visited my website?

Wednesday, November 17, 2010

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.

Have you visited my website?

Saturday, November 13, 2010

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:

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

Have you visited my website?

Saturday, November 6, 2010

Watching the river run

It's been a while since my last blog, but I've noticed a lot of Internet traffic and I want to stay in touch.  The past few months, I've experienced a lot of illness in my family. My mother has needed to go out of town frequently for urgent medical visits. My daughter had surgery, and my best friend was in a car accident that landed her in ICU. My husband has had some medical as well. Traveling out of town for our medical needs has been exhausting.

Being the caregiver instead of the person receiving care is new for me. I remember the days of horrific trigeminal neuralgia pain, the days and years that nothing helped the pain. My mother took care of me. She came over several times a day and ran my household as well as her own. Sometimes I saw her cry, sometimes I heard her prayers, and sometimes she squeezed my hand while the pain ripped through my face.

Because my mother has given me so much, I want to give back. She is strong, fiercely independent, and full of faith. But the past few months, I have seen her frailty. It scares me. 

No one can understand the emotional impact of caregiving until he or she has done it. My jaw hurts constantly, and it causes me to tire easily. It hurts not from trigeminal neuralgia but from a jaw procedure (functional jaw orthopedics) gone bad. It's something I want to address... one day.

I thank God for the opportunity to help my mother and my family. Knowing that each of us needs time to unwind, I welcomed the cool Florida weather today and managed to get outside. I sat in my front yard and let the wind whip my face. If you've experienced the TN pain that wind can evoke, then you know how wonderful it is for me to enjoy it. It's a blessing for which I thank God. 

I sat underneath my favorite tree, a golden rain tree. We planted it right after our home was built. It's past the golden phase and it's blossoms have turned pink. They're falling on the ground.
Across from my front yard is an empty lot that sits directly on the St. Johns River. I made myself a cup of Dunkin Donuts decaf, left the husband (a Gator game was on) and dogs inside, and watched the breeze blow ripples onto the water. For 30 minutes I was responsible for no one but me. And I thought of Loggins and Messina's "Run River Run," a song popular when I was a teenager. 

For as long as I can remember, the St. Johns River has been nearby. When I was in the Air Force, I longed to see it, even when I was stationed at a beach town. The river is home to me, and I can't imagine living too far from it. It's an anchor.

Unlike the ones that are attached to boats, our anchors should be free of weight. My number one anchor is my faith in the LORD. My second anchor is my family. Another anchor is the fact that my experience helps others. I'm humbled by the number of page views my blog receives and happy to see it reaching across the world.

Would you allow me a chance to get to know you? I'd like you to share with me the things that give you peace and stability. 

Run River Run
by Loggins and Messina

If you've been thinking you're all that you've got,
Then don't feel alone anymore.
When we're together, then you've got a lot,
'Cause I am the river and you are the shore.

And it goes on and on, oh, watching the river run,
Further and further from things that we've done,
Leaving them one by one.
And we have just begun watching the river run.
Listening, learning and yearning to
Run, river, run.

Winding and swirling and dancing along,
We pass by the old willow tree
Where lovers caress as we sing of our song,
Twisting together when we greet the sea.