Pain, prayers, and peace

I'll be signing off for the Holidays, at least until after Christmas. Before I go, I'd like to say Merry Christmas to my friends, the ones I've met, and the ones I haven't.

It isn't easy to have trigeminal or glossopharyngeal neuralgia and have peace. The pain threatens to steal our lives. Sometimes it feels as though our sanity will be the next thing to go. When I was suffering, I found peace in Jesus Christ. His peace was present in the midst of the most terrible pain. I prayed, finding solace in Him. I grew to understand I wasn't alone in my suffering.

If you are experiencing facial pain, I'd like to encourage you to tap into your faith. Take a chance. Dare to believe that Jesus is real and that He cares about you. Take s step of faith and trust that your health will improve.

I can't think of anyone who needs the thrill of hope more than someone who has trigeminal or glossopharyngeal neuralgia. My prayer is that you will be full of peace this Christmas.

 O Holy Night

O holy night, the stars are brightly shining;
It is the night of the dear Savior's birth!
Long lay the world in sin and error pining,
Till He appeared and the soul felt its worth.
A thrill of hope, the weary soul rejoices,
For yonder breaks a new and glorious morn.

Fall on your knees, O hear the angel voices.

O night divine, O night when Christ was born.

O night, O holy night, O night divine!

 

 

Have you visited my website?

Resources: clothing to shield your face from cold wind

Yesterday morning, I watched the Today show and noticed some fabulous clothing items that seem useful for people who have trigeminal neuralgia. They are made by Loki and have adjustable masks for the face. One of their jackets is pictured above.  If you like Loki's "morf" pullover hoodie, you can find it on their website Loki clothing.

If you'd like to know about the shield that is pictured, it can be purchased at Grainger products. Grainger products

I added a new resource September 21, 2012. Here is the link to that page: http://kathytaylortrigeminalneuralgia.blogspot.com/2012/09/affordable-winter-head-and-face.html

If anyone has another product or resource, please let me know. It looks as though a warming trend is coming our way. Take good care.

Have you visited my website? www.withgreatmercy.com

Gluten-free no chew broccoli cheese soup recipe

Two 32 oz cartons organic (gluten-free) chicken broth
1 cup peeled potatoes, finely diced
1 tsp onion powder (optional)
1/4 cup brown rice flour
1 tablespoon minced garlic
1 tsp sea salt
1 1/2 cups milk (I used 1percent fat)
14 oz bag frozen broccoli florets
8 oz cheddar cheese (I used 2 percent sharp cheddar)

In a covered 6 or 8 quart pot, bring chicken broth to a boil. Add potatoes, onions, garlic, and salt. Put the lid back on and bring back to a low boil until potatoes are extremely soft. They, along with the brown rice flour, will give your soup body. When your broth comes to a low boil, turn it down to a simmer.

To create a no-chew soup, you'll need to boil your broccoli separately, until it is soft. Place it in a blender or run it through a food processor until it is pulverized.  Place it into the soup and stir. Add cheese to the mixture, stirring until it melts. Heat until it is a desirable temperature for serving.

For a garnish, sprinkle a little extra cheese on top. It's a full-bodied soup that isn't terribly heavy or rich.

To find other no-chew recipes on the site, use the Google search tool on my blog. Thanks!

Have you visited my website? www.withgreatmercy.com

Cold, Christmas, and Comfort

For people who have trigeminal neuralgia, Christmastime can deliver a double whammy. The pain caused by the cold can be paralyzing, making work and social interaction burdensome. Sometimes just surviving the pain is the best one can do.

Just when we're expected to enjoy "Walking in the Winter Wonderland," we are forced to retreat. The best time of year sometimes becomes the cruelest. And this is true for many, not just for people who have facial pain. The pressure of expectations weighs heavily on our minds, hearts, and spirits.

We're not going to be perfect, our friends and family aren't going to be, and perhaps the holiday will be less than idyllic. And that's okay. The key to surviving the imperfection is to find solace.

Finding comfort in one's situation can seem impossible, but it is doable. One way to start is to trim our list of activities. If you've gone to the neighbor's Christmas party and taken your special homemade divinity every year, it may have become an expectation. Expectations equal pressure. When we decline an invitation to a gathering, we often hear and sense others' disappointment. But we can get past it.

We must take care of ourselves. People tell one another to do this all the time, but often the phrase is uttered without considering its meaning. This Christmas, let's embrace the message.

Take care of yourself.

To fend off depression that can result from facial pain and as well as holiday stress, make a plan. Take a mental inventory of things, tangible and intangible, you find comforting. Write them down. Find them if you don't know where they are. Be prepared to spend a few hours alone when the rest of your family is socializing.

Need some suggestions? Make a list of music for your I-Pod especially for this time, a list that may include anything from tear-jerking songs to happy holiday tunes. You've experienced a full gamut of emotions in your life, and it is acceptable to feel them now. Believe you will have better times, less pain in the future. Unless we believe things will get better, they won't.

Put your favorite DVDs by the player. Brew a pot of your favorite tea or coffee. Peruse your favorite photo album. Prepare an online list of the funniest videos you've seen on YouTube, and have them ready to make you laugh.  Have something to read that's easy and brings you comfort.

Now is the time to schedule ways to connect with people we love. If your family or friends are distant, make a date to text them if it is painful to talk. If not, make a date to Skype or call someone special.

Recognizing our limitations also helps us let ourselves off the "expectation hook.' Sometimes getting out or pushing through can help us feel better, but sometimes it makes pain worse. No one can make these decisions for you. You are the best judge, the best predictor of the outcome. It's important to resist the pressure of going along with everyone else if you believe the activity will trigger more pain. Stand your ground: take care of yourself.

As individuals, we find solace in different ways. What brings you comfort? Your comment may help someone else.

Have you visited my website? www.withgreatmercy.com

Memorializing Cherry

A week ago, my friend Cherry died. She had been ill for a few weeks, but she seemed to be getting better. Then she suddenly died. My mother knew Cherry since they were in elementary school.

Cherry lifted me up and supported me while trigeminal neuralgia seemed to be winning in a war it had launched against me. Although she had not experienced facial pain, she never doubted the intensity of my suffering. There were times when she put her needs on hold to stop and pray for me. One day when my speech was painful and distorted, someone laughed at me. Cherry spoke up because it made her angry. She was the type of friend who could be counted on in times of trouble.

Cherry was a blossom who didn't fade but continually bloomed. I'll always miss her.

Years ago, I wasn't able to go to funerals or stand outside because of having trigeminal neuralgia. Monday I was able to do both, celebrating her life and acknowledging Cherry's passing. Although I am relieved that she is no longer having pain and is with the Lord, I will always miss her.

At the cemetery, the wicked wind chilled the mourners. It slapped my face, reminding me of the electrocution-type pains it would have caused me years ago. I thank the Lord for the opportunity to live a "normal" life again.

Thank you, Cherry, for your prayers, your love, and your laughter.

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?

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.

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?

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?

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? 


Have you visited my website?

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.

Did yesterday's barometric pressure cause your pain to spike?

Yesterday my dentist's office called to confirm a cleaning for me, giving me 48 hours notice. I'm a "special needs" dental patient. People who have facial pain or jaw pain knows what that means. We can't always make it to our appointments because prolonged opening of our jaws isn't a good idea. Or perhaps we need our dentist to make an accommodation for us.

When the call came in, I said I'd be there. But I just called to reschedule. It's all about the weather.

Yesterday I took my mother to Jacksonville for a medical appointment. We commented on the fact that the temperature was projected to climb to 91. It seemed unlikely because the morning was soft and breezy, with a nice cloud cover. Nice? Yes. It was a long, humid, hot, steamy summer.

The day got warmer, but there was no steam. Mom and I discussed the fact that it didn't seem so hot. As we were leaving Jacksonville, my jaw began to hurt deep within its condyles. By the time I got home, the pain had intensified quite a bit,  ripping into my ear and down my neck. My right jaw felt as though it wanted to lock shut. I incresed my Baclofen (a prescription muscle relaxer), according to my doctor's instructions, and it helped.

The weather report showed a huge front, low barometric pressure covering most of the country. "That's it," I told my husband.

Today I have heard from others whose pain was active yesterday. It's good to have an explanation. It doesn't make the pain any lighter, but it helps to know that others can validate our experience and that a scientific cause actually exists.

I am thankful to feel much better today. I'll be talking more about the situation with my jaw later because it has everything to do with forgiveness, procedures gone wrong, and how we cope with practitioners who insist they are right even when their techniques have caused us pain.

Did your pain spike yesterday? Are you better today?

I invite you to visit my website, www.withgreatmercy.com

Celebrating six years

Six years ago yesterday, I had my last electrocution-type pain from trigeminal neuralgia (TN). I thank God for His mercy.

Sometimes the pain from trigeminal neuralgia made it difficult to believe that I could be well again. Some people might call the past six years remission, but I call it a miracle. I was in terrible pain, had been for quite a while, when a group of people gathered around me to pray. The pain left, and it never returned.

As the prayer began, a passage from Psalm 91 was read:

 ¹He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty. ²I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.  ³Surely he shall deliver thee from the snare of the fowler, and from the noisome pestilence.  ⁴He shall cover thee with his feathers, and under his wings shalt thou trust: his truth shall be thy shield and buckler. ⁵Thou shalt not be afraid for the terror by night; nor for the arrow that flieth by day. 
My prayers were answered. The trigeminal neuralgia pain stopped. Some people call it remission, but I know that it is a miracle.


About four years ago, I began to have a different type of facial pain. I knew right away it wasn't TN, but diagnosis was difficult. It is caused by my jaw.  I have faith that I will continue to live a life that is free from fear and filled with freedom. I can face the wind, sit under a ceiling fan or an air conditioner vent, and brush my teeth. I can read because my eye no longer hurts. I can talk and smile. And I pray.
May I say a prayer for you? If so, please leave a comment or email me. God bless you.

 Have you visited my website? withgreatmercy

Easy chew recipe: apple crisp

Fall is here, and although the Florida weather has taken another turn for warm and humid, I've been hankering for some apples. I cooked up this recipe today, trying to minimize sugar, fats, and chewing. If chewing hurts, you may want to avoid this recipe. It's possible that you could pulverize the sauteed apples in a blender to get them to a no-chew consistency.

3 cups finely diced red delicious apples
1 tablespoon Smart Balance light buttery spread
Pinch of stevia (or sugar) and a pinch of cinnamon



1/4 cup ground walnuts
3 tablespoons brown sugar or sugar in the raw
1/4 teaspoon cinnamon
2 tablespoons flour


1 tablespoon water

Peel and dice apples into small pieces as shown.

Saute them in buttery spread for five to seven minutes over medium heat. Stir as they cook. I sprinkled mine with a dash of cinnamon and stevia for extra flavor. When they have been cooked until they are soft, place the apples in a one-quart casserole dish.

 before baking

In a separate container, mix finely ground walnuts (I chopped mine in my Shake and Take), flour, brown sugar (or Sugar in the Raw), and 1/4 teaspoon of cinnamon.  Toss the mixture evenly onto the apples. Sprinkle with the tablespoon of water.

Bake at 350 degree heat for 30 minutes. Serves three.

This would be great topped with whipped creme, but I can't afford the calories. For more recipes (easy or no-chew) please use the google tool at the top of my blog.

Have you visited my website? With Great Mercy

Decisions We Cannot Undo

When I worked as the director of patient services for a facial pain organization, it was not unusual to receive a phone call, an email, or to talk face to face with an individual who regretted having a procedure.  The discontent was usually directed at two people: the physician or health care practitioner who performed the deed and at the person who underwent the treatment.

It's so easy to blame one's self, to want to go back and undo it. People often torment themselves with wondering why they made the decision.

Let yourself off the hook. Consider this:

* You were taking action to improve your situation.

* You were in terrible pain and made a decision that seemed sound.

* You underwent an approved procedure.

Other considerations are possible. Maybe you spoke to someone at a facial pain organization or someone who had the same procedure and got better. Perhaps you are responsible for someone else's care and did what you could in hopes of being able to help others. Maybe you felt as though you could not continue to endure the pain.

If we saw someone enduring terrible pain, we would expect them to do something to try to relieve it. That's what you did. You're not guilty, not foolish, not rash. When we look at numbers, it can be difficult to measure the success of a procedure. Even if only one percent of treatments have side effects, what if we are the one?

We think positively, moving ahead with the course of action. We want to function again, to have a life, a career, and to be productive. But if things go wrong, it's difficult to continue to "think on the bright side of life." But thinking in a positive manner continues to be a powerful tool, regardless of the extent of suffering. Most of us with facial conditions have walked through some dark places, times when positive thoughts eluded us. We've got to move ahead, find hope again.

Whatever went wrong, it's not your fault. Accepting that will help you deal with circumstances that surround your decision, circumstances such as Anesthesia Dolorosa, increased pain, or numbness. It also means letting go of anger and bitterness that arises with the practitioner and possibly the fact that we have paid that person for a procedure that didn't help us.


We've done the best we can do. 

I've never had a procedure for facial pain, but I had one for my jaw. The procedure, including travel and lodging, was about $25,000 out of pocket. And my jaw got worse. Much worse. It's not easy to deal with, and it gives me insight into regret. I had more than one opinion about my jaw, and I saw the best of the best. Maybe I'll blog more about it at another time.

We want pain to go away. It's even more important to "get rid of it" when those around us don't understand it's severity. Being angry with one's self can cause depression, frustration, and lack of confidence. Forgive yourself.


Just a shout-out: I want to thank the Lord for helping me through trigeminal neuralgia. 


Have you visited my website? www.withgreatmercy.com

Another about face

A couple of weeks ago, I wondered why the blemishes on my forehead, chin, nose, and cheek had not gone away. After all, I'm fifty-something and should be past this stage. I didn't question why I had broken out, considering the amount of stress caused by family illnesses lately. (Plus, I'm having stress caused by a jaw problem, but I'll discuss that in a future entry.) And we've had a Florida summer, hot and humid.

I took a good look at the skin eruptions in the magnifying mirror, and I decided it needed to be checked. It looked a little like a bubble. Years ago, a similar bubble on my face had been basal cell carcinoma, something I discuss in With Great Mercy.  A couple of days after discovering the blemish, my husband took me to see my dermatologist in Jacksonville.

With a quick glance, my physician diagnosed Rosacea. What? Shouldn't this have occurred when I was younger? Why isn't my face red? The doctor explained that it often shows up in middle age, doesn't necessarily cause redness, and that my mild case could be easily treated. Thankful that the situation was benign and my outbreak in early stages, I took a sample of Finacea and the accompanying literature he offered me. The pamphlet listed some of Rosacea's triggers. Stress is one. Hot, humid weather is another cause. The information given by the makers of Finacea advises people who have the skin irritation to stay away from hot baths, hot tubs, and saunas.

There goes one of my stress relievers, my big tub with jets. Isn't it amazing, how the very things that help us can also harm us?

After using the product a couple of weeks, I've noticed quite an improvement. Being a rehabilitation counselor, I like to read the fine print to see the contraindications. But this time I didn't. I've stayed in the "patient zone" and out of the advocate's area. I really wanted to give the medication a chance. Now that the outbreak is clearing, I'm hoping to be brave enough to read the fine print. The fine print can be like a commercial for a medication, one whose side-effects can frighten a person out of trying it.



After having experienced the pain of trigeminal neuralgia and a terrible jaw issue, I'm thankful the diagnosis wasn't something that required a complex decision. If you would like more information on Rosacea, the Mayo Clinic has some good information.

Every day I say a prayer for people who have facial pain. God bless you on your path to healing.

Have you visited my website? With Great Mercy

Cold weather: minimizing impact

The Boy Scouts say it best: be prepared. What does this mean to someone who has trigeminal neuralgia or neuropathic facial pain?

Summer offers some people who have trigeminal neuralgia and other types of face pain a reprieve. Sometimes it's hard to imagine (and who wants to remember?) the suffering that occurs. No one wants to think about the possibility of severe pain returning, but the past two winters have been tough ones. So let's think about what can be done to help should this be another frigid season.

Before the winter approaches, have a talk with your family and friends. Talk to them about the rough places, the times when the pain reached your spirit, not just in your face.  Tell them what might have made the tough patches better, and ask them if you could have done something differently to help make the situation easier.

Ask your physician about a permit for accessible parking. Explain what it feels like when the wind hits your face. When you get the permit request signed, go to the issuing office before the harsh weather comes. For more information, please visit this entry: trigeminal neuralgia,parking lots, and wind. You may also want to take a look at some resources to shield your face from the wind. .

Have a Plan B for the Holidays. Although it is a festive time of the year, Thanksgiving, Christmas, Hanakkuh, and New Year's Eve fall during the colder months.

If you're the person who cooks, think about what you can do to make the dinner simpler. Ask people to bring or casserole or dessert. And have an alternate plan just in case you aren't well enough to cook that day.

Simplify gift giving. This will mean different things to different people. Maybe it will mean ordering things via the Internet or shopping at places that offer gift wrapping. It could mean fewer gifts.

For every day life, have things handy to simplify your life. Write directions to your home or other gathering places so that you can send them through email, fax, or snail mail rather than explaining them on the phone. People who experience pain when they talk know the importance of having information available in writing. Consider text messaging for your cell phone if you don't have it.

Schedule automobile work, home maintenance, and routine medical and dental visits before the cold weather hits. Stamina is often an issue for people who have face pain, and you'll want to have the fewest amount of responsibilities possible.

Make a list of important phone numbers or emails. Keep them with you as well as in a convenient place in your home.

Have cold weather attire handy.

If you do something to help you prepare for the cold weather, I'd love you to share it with us. God bless you.

Have you visited my website? www.withgreatmercy.com

Computers: do they make your pain worse?

The lack of a definitive diagnosis can be almost as frustrating as pain itself. How can one move forward with treatment if he or she doesn't know the root of the problem? Individuals who have facial pain often have neck pain, shoulder pain, jaw pain, or back pain.

Medical intervention is appropriate to determine a diagnosis.

People often ask me about the pain I've experienced. I have learned about pain from your experiences, my experience, and academic information. I'm no physician, but I can tell you some things that have reduced discomfort through my neck and sternocleidomastoid (scm) area. Here is one of many diagrams of the a diagrams of the scm available on the Internet: The SCM.  If you are looking for a case study, plenty are available. You may want to read this: A case study of sternocleidomastoid syndrome.

Several years ago when I returned to the workforce, I spent most of my day working on a computer and talking on the phone. I loved what I was doing, but pain hit me full force. It was debilitating. When my doctor sent me for physical therapy, I was blessed to have a therapist who used Kinesio tape. She had advanced training with Kinesio, and I was amazed that she could place a piece of tape in my scm area and give me relief from computer strain. If you're interested in Kinesio tape, you can find more information here: Kinesio tape . Be sure to find a qualified medical professional who has expertise with this tool if you think you would like to pursue this avenue of medical care.

Another thing that helped me and still helps me with muscle pain is medication. I take a muscle relaxer as prescribed by my neurologist. It helps me with pain caused by my jaw and pain that radiates from my cervical area.

A change in ergonomics has also helped me. I stopped sitting a computer desk. This isn't an option for everyone, but it has benefited me. I use my notebook computer, and I type from my recliner.  Years ago, my husband voiced his desire for one of these chairs, but they did not appeal to my design aesthetic.  My upper cervical chiropractor told me he thought I would benefit from the neck support. He was right! I bought an inexpensive recliner, and what wonderful support it provides. My office, which once was an entire room, is now a chair. I have a wireless printer, so I am not tied to a desk. I don't use a mouse any more, and that seems to help also.

One more thing that benefits me is having a bed that "feels good." That means different things for different people. For me, it means A Stearns and Foster mattress, an "upgraded" model.  Pain is expensive, but relief is worth it. That's my opinion. I hope you find relief. God bless you.

Have you visited my website? http://www.withgreatmercy.com/

Eye: the first division of the trigeminal nerve

Years ago, when I was new to the world of trigeminal neuralgia, I was visiting my neurologist at the Mayo Clinic in Jacksonville. He asked me if I had eye pain, and I was shocked, thinking he could read my mind. I didn't realize that he asked because eye pain is so problematic for people who have trigeminal neuralgia. And until then, I thought the "discomfort" was my imagination or just referred pain from my jaw and cheek.

 Sure, I had seen diagrams of the trigeminal nerve and noticed that one of it's divisions is located in the eye area. But I didn't want to face the reality that my eye might be affected. As time progressed and the pain became worse, my eye bothered me more.

Sometimes I felt as though my eye would pop out. The pressure and the pain were terrible and it made reading difficult, stealing one more ability from me. And isolation spread itself through my life like a cancer that refused to be arrested.

This is where my story of hope begins, hope that someway somehow God would intervene and take trigeminal neuralgia from me. I prayed that I'd have the courage to move forward with a surgery or that the pain would stop. I knew all about TN going into remission, and I asked please Lord. Let it go into remission forever.  In October 2004, the pain left.

I still have jaw joint pain, but I am thankful it's not trigeminal neuralgia. And it was great to begin life again. Socially, it's been difficult. I live in a small town. People had never heard of trigeminal neuralgia, and they thought I was being a drama queen. After all I had been a drama teacher. They never understood the validity of my disability.

Yesterday, I was prescribed contact lenses. Today, unlike yesterday, I've been successful at putting them in and taking them out. This process is easy for some, but I've always been a little nervous about putting eye drops in or getting close to my eye.

After several attempts yesterday to put in my new contacts, I thought I wouldn't be able to stop my strong reflex to blink. But today I got them in just fine. I put one inside out and had to take it out and put it back in again. I know I can do this.

The entire time I struggled with the simple procedure, I kept thinking if I can get through trigeminal neuralgia I can learn to do something simple like put in contact lenses. It gave me the incentive to persist.


The disability known as trigeminal neuralgia causes us all to learn that we are stronger than we imagined. How has the pain helped you recognize your strength? I'd love to hear your thoughts. Comments are welcome.


Have you visited my website? www.withgreatmercy.com

No chew recipe: reduced fat macaroni and cheese (Gluten-free)

3 cups brown rice pasta, overcooked
1 1/4 cup reduced fat (2% or less) shredded cheddar cheese
2/3 cup nonfat plain Greek yogurt
1 egg white
1 tablespoon grated parmesan cheese
1 tablespoon ground flax seed
1/2 teaspoon sea salt
Nonstick cooking spray

Overcook the pasta until it's very soft and drain well. Let it cool. You can put it in a food processor or blender to chop it into fine pieces or you can use your hands to break the pasta into small pieces. I used my hands because I wanted one less item to clean-important if one is not feeling well.


After the pasta is finely chopped or shredded, add 3/4 cup of cheese and all the other ingredients. Mix well (You can add more cheese if you like, but I used this portion in an effort to control the fat content of the recipe.) 

Spray casserole dish with nonstick cooking spray. I didn't want to heat the oven too long (it's so hot!) so I divided my mixture into two smaller baking dishes (holding two cups each), requiring less cooking time.

If you've divided your items as I did, cook them at 350 degrees for 20 minutes, pull them out of the oven and top with the remaining cheddar cheese.

If you've put your mac and cheese mixture into one casserole dish, you'll need to let it cook 25 to 28 minutes before you top with the cheese.

In less than five minutes (when the cheese melts), your mac and cheese is ready to be taken from the oven. Let it cool for five minutes before serving. Four portions.

I'm eating mine today with tomato wedges because it's a "good chew" day. Although I no longer have pain from trigeminal neuralgia, I still have a temperamental jaw that sometimes does not allow me to chew.


You may notice that I often use ingredients like ground flax seed and nonfat plain Greek yogurt. They're easy to keep on hand and simplify shopping. I like to use brown rice pasta because it is gluten-free, and it has more fiber and texture than white enriched pasta. It's a little more expensive, too. You can also substitute your favorite pasta.

To learn why I prefer Greek yogurt, see a comparison here http://kathytaylortrigeminalneuralgia.blogspot.com/2010/07/yogurt-whats-difference.html  . According to the Mayo clinic, ground flax seed is also an excellent way to get fiber and mega-3 fatty acids. Flax seed improves digestion. Flax seed is sometimes used to help reduce total blood cholesterol and low-density lipoprotein (LDL, or "bad") cholesterol levels and, as a result, it may help reduce the risk of heart disease.

You can find other no-chew recipes on my blog by using the Google search tool at the top of this page. I am hoping you will feel better soon. Take good care and may God bless you.

Have you visited my website? www.withgreatmercy.com

Trigeminal neuralgia, face pain, and emotions

As someone who has counseled people with facial pain, I understand that it is not uncommon for someone's emotions to reach a nadir. It doesn't matter if it's my pain or the pain that belongs to someone else. So I am always concerned when I hear that someone with facial pain has emotional issues. Of course we do. What others take for granted in every day life has been taken from us, and no one seems to understand the intensity of the pain. Except the people who have it...

I wish that I could explain to the world what it is like to be unable to communicate orally with others and to not know sign language. E-mails and text messages have been some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we humans with facial pain can communicate orally but other times we cannot. We aren't dependable, regardless of how much we would like to be.

Pain of any type can bear on our emotions. Face pain can cause a person to have bad breath and poor dental hygiene (no brushing for days on end sometimes), robs a person of the ability to share a kiss, and going out to eat is just unthinkable. When people experience this much isolation, pain, and disability... well he or she just may get emotional.

Why some people think that the emotional issues cause the pain, I'll never know. Perhaps it's because they have never experienced disability. I've always thought that the world would be a more compassionate place if people could experience trigeminal neuralgia or other types of face pain - just for a day.

Several types of medical issues cause face pain. It could be trigeminal neuralgia, myofascial pain, neuropathic pain, or a jaw problem. These things travel along the trigeminal pathway, and they have a life of their own. We don't know when the pain will come or go. We just know that we are out of commission until it settles down.


If you get emotional because of facial pain, let me reassure you that it's normal. Take good care of yourself. If you are able to talk, you may want to see a counselor. But you may not be able to talk...

God bless you.

Trigeminal neuralgia: the Valley of the Shadow

Many of us have heard, read, or prayed the 23rd Psalm. The passage is often comforting to people who are struggling with pain or illness. Here's the part I like best, from verse four:  

  

Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me.

When I experienced the electrifying pain of trigeminal neuralgia, I prayed to die. And this portion of the verse had new meaning for me. I was in the shadow of death, I reasoned, because I wanted to die. Yet the pain held no sting of death, and I felt trapped. I was alive but could not live with the pain. It was the darkest valley I've known.

The "shadow of death" lurked while I wanted to die and could not.


It's not unusual for people who have trigeminal neuralgia to think about dying. They want relief from the pain, a pain so overwhelming it doesn't seem that another second of it can be tolerated. I lived in fear, fear of the pain.

People who have not experienced trigeminal neuralgia often notice that someone who has TN is depressed. Sometimes onlookers think the depression has caused the pain, but people who have TN know differently. It's the pain and the hopelessness that causes the sorrow.


Let's examine the second part of the quotation. I will fear no evil. It takes guts to have such tremendous pain, to stare it in the face and refuse to fear it. But we can do it. For thou art with me. We don't walk through our valleys alone, and in this we have our hope.

We cannot get better without hope, and if we are afraid, hope eludes us. Let's believe. Together and with the hope of our Lord, we can face fear and cling to hope.

Have you experienced fear or depression along with your pain? I'd love to hear from you.

For more, please visit my website

No chew recipe: black beans, diced tomatoes, and whole grain brown rice

This recipe is full of fiber and can be prepared with ingredients that can be stocked in your shelves and ready to be used when the pain spikes. It's quick, easy, and nutritious. See information below about the spices this recipe uses.

10 ounce can RoTel diced tomatoes with lime juice and cilantro
15 ounce can Progresso black beans

a pinch (less than 1/8 teaspoon) xanthum gum (optional)
2 tablespoon diced fresh onion or 1 teaspoon dried green onion
1 tablespoon ground flax seed

1 teaspoon brown cane sugar
1/2 teaspoon minced garlic

1/4 teaspoon cumin
1/4 teaspoon sea salt

Success whole grain brown rice boil-in-bag
Optional dried cilantro, finely chopped very ripe fresh tomato or salsa, and non-fat plain Greek yogurt for garnish

If you like your black beans to be extra thick, you may want to use the optional xanthum gum. Use it first, putting the can of tomatoes into a pot, adding the xanthum gum, stirring until lumps are gone. Because black beans are tough and chewy, putting them in a food processor or breaking them down with a hand blender is necessary if you want to take the "chewy" out.

If you are using fresh onion, you'll want to break them down with the black beans. After they have been softened in this manner, add them to the pot. If you are using dried green onions, add then to the mixture along with ground flax seed, sugar, garlic, cumin, and sea salt. I added a little (1/2 teaspoon) dried cilantro because I like this dish to be really spicy. Bring to a low boil and then cover and reduce to low  heat. Stir often. After the mixture has simmered for 15 minutes, turn off the heat and and keep it covered.

While the black beans are cooking, put whole grain brown rice boil-in-bag in another pot and cook according to the directions on the package. If you want your rice to be softer, cook 2-5 minutes longer. Any whole grain brown rice will work, but the boil-in-bags make cooking simpler. When it's cooked and drained, place some brown rice into a bowl and top with the black bean and tomato mixture.

Makes four servings. I've garnished mine with lowfat plain Greek yogurt (a healthier alternative to the  traditional sour cream), a pinch of dried cilantro, and some fresh diced tomatoes. It's a little spicy. Enjoy!

According to www.nutrition-and-you.com, cilantro contains anti-oxidants, vitamins, and it may help with digestive and cholesterol issues.  Additionally,  www.organicfacts.net states that cumin's health benefits include aiding in digestion, piles, insomnia, respiratory disorders, asthma, bronchitis, common cold, lactation, anemia, skin disorders, boils, immunity, and cancer. Ground flax seed, according to www.healthcastle.com is beneficial in lowering cholesterol, triglycerides, and blood pressure.

You can find other no-chew recipes on my blog by using the Google search tool at the top of this page. I am hoping you will feel better soon. Take good care and may God bless you.

Have you visited my website? With Great Mercy ?

Hospital Zone, respite, and answered prayers

In the past week, my Mom has needed emergency care twice. Yesterday my daughter had major surgery, and she had a procedure that lasted several hours. I hugged her at 10:30 a.m. and did not get to see her again until about 5:00 pm.. Last night, I slept in a chair in her hospital room.

Today I came back home ( a 1.5 hour drive) only to learn that my Mother needed to go back to the same area I just left so she could get treatment for her own emergent medical situation. Because I had very little sleep last night, I called my uncle, and took my mom back part of the way, not far from his home. He took my mom to the opthamologist, and I came back home to rest. Although I offered to pick my mother back up at his house, my uncle gladly brought her back home after her treatment was accomplished.

The good news is that both my Mom and daughter will both be fine, and I appreciate everyone's prayers. I'll be blogging about trigeminal neuralgia and facial pain soon but I'm going to take a couple of days to get some rest. A caretaker's stress can be high, and I remember the days when people took care of me. I'm glad I have a chance to give back a little caregiving in return.

We all have limits, and it's important to recognize them. Today I knew I was not the best candidate to take my Mom for treatment. It's not easy to let go, but one person cannot carry all the weight. If you are caring for someone who has trigeminal neuralgia or an extended illness, get support for yourself. You will need a respite, a chance to rest or take care of yourself. Emergent situations shouldn't overlap, but sometimes they do.

Thanks again for your thoughts and prayers. A big shout of thanks I give to my friend who put me up for then night preceding my daughter's surgery. As Claire Patterson, the founder of the Trigeminal Neuraglia Association has been known to say: only the nicest people have facial pain. It's not a direct quote, but she's right.

Yogurt: what's the difference?

After sharing with you some recipes that feature Greek yogurt several people have asked me what the difference in the Yogurt is. I learned about Greek yogurt in a nutrition class I took recently. Greek yogurt  is thicker and creamier. I have both types in my refrigerator, so I thought  it might be good to compare them for you. Both have fat free labels and both are plain, no flavoring.

The plain organic yogurt I have  is Stonyfield brand. (pictured above)

The Fage Greek yogurt does not use the word organic.(pictured below)

Stonyfield Organic              Fage Total 0%

Calories 110                      Calories 120

Fat 0                                 Fat 0

Carbohydrate 15g              Carbohydrate 9g

Sodium 160                       Sodium 85

Cholesterol 0                     Cholesterol 0

Potassium 540                   Potassium not listed on label


Thanks for your interest. I'm not a dietician or a nutrition expert, but I like to share things that work for me. You can search my blog for no-chew recipes. Hope this information is helpful.


Have you visited my website? With Great Mercy

Nutritious no-fat smoothie with fiber

Most of us have tried a smoothie, but they often contain things that aren't too healthy. Here's a simple recipe for a thick "shake."

2/3 cup nonfat plain Greek yogurt
1/3 cup frozen or fresh berries
1 teaspoon ground flax seed
2 ounces cold water (if using frozen berries)
  or 1/4 crushed ice if using fresh berries
Sweetener (I use 1/2 teaspoon of Stevia)

If you are looking for another way to get more protein and fiber, summer is a great time to incorporate smoothies into your diet. They can be made in a way that they aren't too high in sugar, and they are simple to make. I put mine in a Shake and Take, but a smoothie can be made with a full-size blender or a hand blender.

The ground flax seed gives a smoothie more body. According to the Mayo clinic, it is also an excellent way to get fiber and mega-3 fatty acids. Flax seed improves digestion. Flax seed is sometimes used to help reduce total blood cholesterol and low-density lipoprotein (LDL, or "bad") cholesterol levels and, as a result, it may help reduce the risk of heart disease.  Click to read more of what Mayo clinic says about flax seed

Flax seed has a 4.5 grams of fat in two tablespoons, but only half a gram of saturated fat. This recipe has less than a gram of fat.

You can find other no-chew or easy-chew recipes if you search my blog. Hope you feel better soon!

If you would like to share a no or easy-chew recipe with us, please let me know. I'd love to feature you and your recipe.

Have you visited my website? Click here

The Americans with Disabilities Act

Thank you for your comments and emails about how fighting the pain caused by wind. Yes, trigeminal neuralgia and other facial pain conditions are disabilities. It's important to know why. I'm going to provide a link where I pulled the information for this entry. Let's take a look at how the Americans with Disabilities Act (ADA) defines disability:  

"Disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment."

Knowing what the ADA means by impairment is essential to understanding what a disability is.

"(1) The phrase physical or mental impairment means --

(i) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine."

Trigeminal neuralgia is a neurological disorder, mentioned above: "anatomical loss affecting one or more of the following systems: neurological."

If we back up to look at how the ADA defines a disability, we see that the impairment must substantially limit a major life activity. Here is the definition for a "major life activity:"

 "(2) The phrase major life activities means functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."

Do you often have difficulty caring for yourself (cooking, brushing your teeth, entering an environment because of the wind)? Speaking? Working? 

Invisible disabilities, such as trigeminal neuralgia, are valid. Here's the link to the portion of the ADA quoted. Scroll down to Sec.36.104 Definitions Americans with Disabilities Act

Take good care!

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