Trigeminal neuralgia and the National Day of Prayer

When I was suffering with the "lightening strikes" of trigeminal neuralgia, I did a lot of praying as well as some bargaining with God. One of the things I promised Him was that I would be grateful forever if He would take the pain.

In my opinion, bargaining with God is ineffective. But when one is desperate, a variety of tactics are employed. I'm glad the Lord saw my faith and desperation and looked beyond my attempt to make a deal with Him.

Almost every day, I go to a private prayer list and pray for individuals who have facial pain and other types of nerve pain. I call each name aloud. With today being the National Day of Prayer, I wanted to focus the day praying for everyone who has face pain, including people whose names I don't know, whose voices I've never heard, and whose emails I have not read.

My day began with prayer, and I felt uplifted and grateful. Then as the day continued, other things commanded my attention. I've had a week full of medical appointments and trips to the pharmacy. A drugstore in my community closed, and the one I use is bursting with business. The good news, however, is that I have a "no co-pay" card for a prescription.

When the cashier told me that "no co-pay" means that I'm responsible for more than $250.00, I became anxious. She continued to check my options, and I began to pray. But this time I prayed for me. I asked the Lord to remind me how small the current issue really is compared to trigeminal or glossopharyngeal neuralgia. With my car in park and a foot on the brake, I closed my eyes and recalled the pain. I remembered that I am blessed. And if you are someone who is suffering, I remembered you.

Hope is the first step to recovery. If your hope is gone and you would like me to call your name when I pray, please contact me via email.

I am thankful to live in a country that allows us to pray. 

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Making Mother's Day special for someone who experiences facial pain

Celebrating Mother's Day with a mom who has trigeminal neuralgia or neuropathic facial pain can be complicated. But I remember a wonderful Mother's Day that occurred when I was ill. It was fabulous in spite of the pain, my inability to chew, and the fact that I was experiencing extreme social isolation.

My daughter and her husband came to my home. I didn't have to concern myself with facing the world, about applying cosmetics, or accomplishing oral hygiene. Dan, my son-in-law, brought food with him and prepared a meal for me. At the time I had not developed an allergy to eggs, and he brought "Pour a Quiche," which he baked in my oven. No chewing was necessary because I avoided the crust. I cannot remember the side dishes or the dessert, but I recall the meal was delicious.

After brunch, the family and I settled into the living room and watched a movie. I fell asleep while they were here, comforted by their presence. Comfort may be the best gift someone can give a mother who is experiencing unrelenting pain. It might mean letting go of a traditional Mother's Day and designing one to suit a mother's needs.

Simple things can be most important to someone who has lost much. If you would like to prepare a meal for a special lady you can find some "no-chew" recipes if you go up to the Google search bar at the top of this page.

Giving Mom a reprieve from social isolation is another way to bring comfort to her life. Although she may not be able to talk much, she can listen. You might want to read to her, a favorite poem, a passage from the Bible, or a written memory of a special moment you've shared.

Because people who have trigeminal neuralgia often depend greatly on their computers and the Internet, you may want to ask Mom if hers is in good working order. If not, taking care of maintenance is an excellent gift.

Most of all, don't underrate the power of touch. She'll like it if you gently squeeze her hand. If she has a side of her face that doesn't have pain, you can place your cheek next to hers. Many people who have trigeminal neuralgia crave touch, but they fear being touched in a manner that evokes pain. Quiet comfort is best. Too much noise, whether it's loud conversation, music, or television can create further neurological distress.

Invest time into finding the best card you can. It will linger long after your visit, giving Mom a reminder of your visit.

I'll always remember the tough years and how my family made the day special, tailored to my needs. My mother made the day about me, forfeiting her own desires. I love you, Mama.


Love is stronger than pain.

We'd love it if you share your desires or gift ideas with us.

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When dying seems preferable to living

Those of us who have experienced the torment of trigeminal neuralgia know there are worse things than dying. Intense and unrelenting suffering can cause a person to lose hope in living, but we must hold onto it.

When I was ill with trigeminal neuralgia, I longed for death. My own suffering caused me to think about the violent death of Jesus and how His pain surpassed mine. If anyone understood that no one really understood, it was He. By "no one understanding," I refer to how our friends and family may think that we can overcome the pain if we want to, if we try, if we think positively. All those things can help, but they don't stop the pain. The stings, strikes, and electrocution-type pains simply wear people down.

Let's shift our focus back to Jesus and think about someone whom He loved, Lazarus. Lazarus was dead, in a tomb, and stinking when Jesus showed up. And we see in John 11, that Martha (brother of the deceased) was not happy with Jesus because He had not been around to heal His friend. But Jesus told her, “I am the resurrection and the life. A moment later, Jesus called for Lazarus, and he came out of the tomb: alive again.


After suffering so long, I remember changing my mind about wanting to die even when pain had spiraled out of control. My mother prayed for me and comforted me and through prayer, I got close enough to Jesus to "hear" Him calling my name. Like never before, I believed in His resurrection power. I began to ask Him to help me live.


Jesus gave me my life back. That was six and a half years ago. I've endured pain from another cranial nerve since then, and I have had some terrible neuropathic facial pain because of a jaw procedure that has gone awry. But Jesus has helped me through it all, helped me reclaim my life each time.


I am not ashamed of the gospel of Jesus Christ. I owe my life, my health, and every good thing that is within me to Him.


Happy Easter. 


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It's flying time again...

Ray Charles, please forgive me for stealing your line, well almost: "It's crying time again." Simply stated, flying often causes additional pain, stress, and tears to those who have facial pain. The pressure changes in the cabin, the noise of the plane and its passengers, and the stress created by airport security issues seem to be enough to give a healthy person a headache. If you're reading this blog, chances are you experience pain that defies definition.

The causes of facial pain vary from one individual to another, and often the cause or diagnosis is difficult to pinpoint. If you have concerns about flying exacerbating your pain, a discussion with your physician or health care practitioner may be beneficial.

Some physicians will recommend that their patients clear their sinuses with a decongestant before flying. They may prescribe medication to help deal with the noise, stress, or other issues related to being a passenger on aircraft.

Because some individuals pain is triggered by noise, two products worth mentioning are Earplanes, earplugs that are made specifically for flying. You can find them online, drug stores, and airport shops. Another option more expensive: noise cancelling earphones or headsets. Although these tools can be helpful, passengers are asked to refrain from using them until the flight instructions have been given and the plane has begun it's flight. They must also be removed just before the end of the journey so information from the flight crew will be heard. You may want to check with the airline to find the current policy is about when the acoustic headphones can and cannot be used.

For those of us whose pain is caused by the jaw or neck, a tiny pillow to give added support can help quite a bit. It's one more thing to carry, but the number of these items are often limited on the plane. Unless one is flying business class, a pillow may not be available.

Fear of flying embraces a new meaning for those who have experienced trigeminal neuralgia, TMJD, or other types of facial pain. Have you heard the expression of living on a wing and a prayer. I think it really fits this situation. How about you?

Happy traveling. May your journey be full of the Lord's mercies.

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The leap

This past week I purchased an Xbox Kinect in hopes of taking off a few pounds off via the Biggest Loser game. Why an Xbox and not the gym?

The closest gym (well, a clean and well lighted place) is approximately 30 miles from me. I've done the trek before, but the cost of gas and the time factors are more than I can afford at this time. So I decided to work out at home. For the past week, I've lunged, kicked, and squatted with Bob the Trainer. It's been no fun at all, but I could tell I was getting a good workout.

If you follow my blog, then you may know that I recently lost my aunt, Julia Mae Patterson. (She liked to be called Judy. When I was a child, she told me it took me all day to say Julia Mae. Our family's first language is Southernese.) Since Judy's death, I have felt almost immobilized at times, paralyzed in grief's thick fog. I want to call her so I can tell her I miss her, that I don't know what I'm going to do without her, and to laugh with her about something humorous that happened in her ICU room the day before she died.

I've asked myself how I could blog about facial pain or help anyone when I was drowning in my own sorrow. Unable to move through my sadness, I was determined to exercise. But why couldn't Bob the trainer cut me a little slack? Maybe I really can't get my form better right now. He was downright annoying at times, and I gained a new respect for the contestants on the show. They are not whining, after all.

After a week with the Biggest Loser, I opened the adventure game that was included with the XBox. The moment it cued, I transformed. Adventure was what I had been craving. I slapped rally balls against the wall with my hands, my knees, my feet, and my body. And when the game was over, it flashed pictures it had taken of me as I played. There I was, leaping into the air, smiling. And it gave me the incentive to hop into the games river raft, the underwater aquarium, and through an obstacle course.

What shut me down? Perhaps I haven't fully recovered from the last time I reached for the gold. I didn't get a prize, but I got injured. Landing was painful, and healing has been slow.

So often in life, we take steps of faith. We reach out to someone, donate time or money, or help a friend with a project. But how often do we jump into the middle of the action? I've learned to be careful.

Caution has been holding me back, and I wonder about my friends with facial pain and other issues. Can you say the same? We protect ourselves, accepting stringent limits and finding more and more things to be out of our grasp.

It's time for me to risk again, to leap into action. I'm not sure what will end up in my hand, but the exercise will benefit me. And someone else, I hope.

Thank you for your emails, your posts on Facebook, your calls and cards. You remain in my prayers, and I thank God for you.

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Dental procedures and getting through them

Having anxiety about dental appointments is common for people who have trigeminal neuralgia, facial pain, and jaw joint issues.

I've counseled people through dental anxiety, and tonight I've gone through a mental checklist because I have a procedure tomorrow. Although I have not had trigeminal neuralgia pain in many years, I have experienced other types of face pain. I also have a jaw that has caused serious issues.

Preparation, phase one: I arranged help with transportation. I won't be going to the dentist's office alone. Someone will drive me.

Phase two: I've made notes to communicate important things to my dentist, in case I forget to discuss them with him.

Three: My neurologist advised me to take a Baclofen (muscle relaxer) and something for anxiety before the procedure. If I were having TN symptoms, he might adjust my anti-seizure medications. Instead of having shots in my mouth, I've arranged for my dentist to use nitrous oxide.

Like many individuals, trigeminal neuralgia manifested itself in me immediately after I had a root canal. I had a cracked tooth. It wasn't painful, but the dentist thought I should have a root canal and referred me to an endodontist. Trigeminal neuralgia set in almost immediately. Perhaps your story is similar to mine.

If you have active TN, it may benefit you if your dentist and neurologist coordinate their efforts to make sure you are medicated properly.

I still have one more preparation tonight. I'm going to read some Psalms, including Chapter 91. No fear. Only faith.

Do you have anxiety about dental appointments? Tips for others?

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Pushing through pain and anxiety

 

Most of us have pushed through the pain. Let's face it. Sometimes we have to.

Have you ever stretched your limits, tackled the matter at hand and felt better as a result of it? It's happened to me. Maybe it's the event that actually makes us feel better and the people we enjoy seeing while we're out. It could also be that during the occasion you felt like the person you were before facial pain became a part of daily life. You are still that person. 

You've changed somewhat, but you haven't morphed into someone else. You share the same past with the "pre-war" persona known as you. You'll share the same future. It may not be exactly as you expected, but with some creativity and formidable determination, your future can still be bright.

Just one more question. Have you ever stretched your limits, tackled the matter, and noticed that your pain spiked significantly? Perhaps it was because the event itself was stressful. The environment was cold, windy, noisy. Or you had to interact with people who don't understand your rare disorder. Maybe it was a situation that would have caused you to experience stress even if you were healthy.

Choosing whether to push through or avoid the "event" requires careful examination. The decision is difficult, and there's no measurement, no exact science, to indicate the outcome. But there are some questions we can ask ourselves.

As you get ready for the occasion (which could mean simply going to a movie, eating out, or a day of shopping), do you find yourself more fatigued as you move get dressed and groom yourself? If the answer is a big yes, then the event might trigger greater pain. Maybe you would benefit more from a quiet, restful day at home.

Consider your environment. Will you have a chance to break from it? This could mean retreating to a quiet room away from the party, the ability to step inside from the wind, or having an established  relationship with a person who can accommodate your disability.

Ask yourself if one particular person is pushing you to move forward with the function. Situations like this can be tricky. While we don't want to disappoint someone else, we have the right to ask for flexibility and latitude. We have limitations.

Think about rescheduling. If your appointment can easily be postponed, doing so may be a good solution.

Envision the worst case scenario should the pain spike. Have a plan and a person who will support you. Make an agreement about how to signal your need to leave the event and follow through with it if necessary. If you are unable to formulate a plan, chances are the event may be at high risk of causing additional pain and stress.

Trial and error teaches us much about what we can and cannot tolerate. What suggestions or questions do you have?

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Conversations with Job: suffering, accusations, and integrity

This past week, I've been reading the book of Job, a Biblical account of a good man who lost everything, including his health. Job's life turns upside down overnight, a riches to rags story.

When I consider Job's tremendous suffering, I think about people who are dealing with trigeminal neuralgia. Many have told me they relate to Job's situation because the pain from TN is so tremendous. I remember feeling the same way, years ago.

Facial pain can steal the things we cherish. People who are at the top of their game turn to focus on finding relief: an accurate diagnosis, a medication, or a procedure to erase pain.

In spite of the provisions the government has made for people with disabilities, individuals who have trigeminal neuralgia and other types of face pain sometimes lose their jobs. It's couched as "restructuring," or blamed on "this economy." After all, corporate America must abide by the Americans With Disabilities Act.

Friends and family sometimes expect us to "get over it" and get on with our lives. When we can't, many of them retreat. Some of Job's friends, if they can be called that, accused him. They told him that his misfortune was caused by his own actions.  Zophar tells him to leave his sins behind and to confess them to God. In other words, get over it and get well, Job.

When I got sick with trigeminal neuralgia, some of my friends looked for a spiritual cause. Was I dabbling in something I shouldn't? Was my husband in business with someone immoral? Did we live in a house with a violent history? The possibilities seemed endless. Maybe someone has intimated that you are somehow responsible for your pain.

Handling accusations of this nature is tricky. We don't want to be deserted or alone. Yet critical rhetoric can make the anguish of pain even more intense. How can we respond? With his body practically decaying while he was alive, Job blamed no one, not himself or God.

Job's buddies missed his money, his prestige. But Job's integrity remained intact. He stated that we can't take it with us and refused to dwell on his material loss. But his health was another matter. Physical suffering cannot be denied. It's the ultimate thief. And it was the most difficult loss for Job.

Later Job's health and wealth were restored. You may have suffered so long that you no longer believe you will have a life again. Have faith that you will get better. If you need counseling to help you regain hope, find a practitioner who is experienced in counseling people with chronic pain.

Without hope, it's difficult for people to overcome pain. Don't blame yourself for disability. It's not your fault.

For more information about The Americans with Disabilities Act and facial pain, please see "disability and loss" on my website.

Hair appointments: protecting your neck

Have you noticed that your facial, jaw, or neck pain increases after a visit to the hairdresser? If so, you may have issues with the shampoo bowl. Years ago, I began to notice that it caused my trigeminal nerve to respond in a negative manner. Even after I stopped having pain caused by trigeminal neuralgia, I noticed that putting my head back into the bowl caused my neck and jaw to hurt.

There's a solution. Some hairdressers have shampoo bowl neck rests. They buy them from professional suppliers for approximately twenty-five dollars. They "pillow" works quite well for me. If I go to someone who does not have a cushion, I stand up, face the bowl and put my head in it, avoiding the backward flexion that spurs pain.

If you'd like to buy your own neck rest, I've seen them on Amazon.com. Maybe I should buy one, but instead, I think I'll give my mom a shout-out. She's a retired hairdresser who colors and cuts my hair at home. Thanks, Mom!

Here's to happy necks, faces, and jaws.

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No chew quick and easy chicken wild rice soup recipe

A simple recipe for the tough days.

16 oz chicken broth
1/2 teaspoon xanthan gum
1 teaspoon minced garlic
1/4 teaspoon poultry seasoning
1/8 teaspoon sea salt
1/2 cup of whole milk or 1/4 cup or nonfat "half and half"

Combine the above ingredients in a pot and bring to a boil, then simmer for approximately half an hour with the lid on the pot. The xanthan gum will cause the liquids to thicken.

12.5 ounce can chicken canned in water
8.5 ounce packet Brown & Wild Uncle Ben's ready whole grain medley rice

Flake the chicken with a fork, until it's in small slivers. Add the chicken, it's broth, and the rice to the mixture. Allow to simmer for approximately 30 minutes, allowing the flavors to blend.

It's done, and it makes three large bowls of soup. You can add more rice or chicken, depending on your preferences. And if you'd like your soup to be creamier, you can add more milk or fat free "half and half." I garnished my bowl with a couple of leafs from a spring mix salad mixture.

For more no chew recipes, you can use the Google bar near the top of this page.

A pillow that reduced my pain level

Jacob found a stone to rest his head against and lay down to sleep, Genesis 28:11.

You may be wondering what this Bible verse has to do with trigeminal neuralgia or other types of facial pain. Or you may be one of us who "fights with the pillow" at night, trying to get comfortable. If you are, I am hoping this post will help you.

The pillow in the picture is a gift from my daughter's mother and father-in-law, Kuei Mei and George. A few months ago, Kuei Mei noticed my neck's limited range of motion and my discomfort. Through my daugher, she sent me a pillow that had been purchased in Asia. When Kelli brought the rattan pillow to me, she began to explain how it might help, and I practically jerked it away from her. I've been looking for the right one for years.

The search began when I worked for the Trigeminal Neuralgia Association. We were having a conference in Dearborn, Michigan and stayed at the hotel where it was held. On the bed was a large decorative pillow that was quite hard. One night when I was tossing and turning, I picked up the huge "cushion" and placed it under my head. I went right to sleep, and I didn't wake up until morning. I used it until we left, and it provided relief every night.

When I got home, I began to fight with my pillow again. I wrote about it on TNA Connect, and someone responded, saying she had the same experience with the decorative pillow at the hotel. Since then, I've looked for one that would give my neck more support, but I never found anything effective.

I longed for Joseph's pillow, one that I could sleep and dream on. That's why the stiff rattan pillow caught my attention immediately.

Although I no longer have trigeminal neuralgia pain, I have a jaw that causes facial pain. I also have cervical spondylosis and bone spurs in my neck.

The day before Thanksgiving, my neck hurt so badly that I could barely function. I had been to the dentist twice that week, one trip being to Lakeland. It put additional strain on my neck. I had no choice but to work on the meal in ten minute increments and then rest for thirty.

I received the pillow Thanksgiving Day. That night I used it, and the next morning my pain was reduced significantly. In fact, I went out to do some Black Friday shopping. My range of motion improved greatly after just one night. My facial pain (which radiates from my jaw and neck) has been greatly reduced. I can move my head to the right and left again. Thank you, Kuei Mei and George, for one of the best gifts I've received.

I'll be following up right away with more information about the pillow. But in the meantime, I'd like to say that I haven't had to take a pain pill since I have used it.

Hallelujah! A follow-up post about the pillow here . And if you cannot find this item and are interested in something else, please see how my search continued and what I found. Click.

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A new year, a new song

Happy New Year!

In January, it is easy to find ourselves hoping that the new year will be kinder than the one that just closed. Sometimes we get our wish, our prayer, our desires. Other times things get worse before they get better, and all we do is continue to learn new ways to cope with pain.

When trigeminal neuralgia was at its worst, I decided to take piano lessons. I began during the warmer months, buying a piano and finding a teacher. There were some issues; sometimes I couldn't see the sheet music very well because my eye hurt. And sometimes I made the same mistake over and over and over. I couldn't blame it on the pain; it was part of the learning process.

Even though the music I made was elementary and riddled with errors, my dogs didn't mind. They followed me into the room and lay at my side while I played. It was as though they had deemed it a "no fight zone." And they never howled, no matter how sour my notes. It was a sweet time.

Best of all, playing reduced the pain.

In my opinion, everyone who has chronic pain needs some sort of distraction therapy, a creative avenue that helps an individual work through the pain. I am impressed with the ventures of my friends who have facial pain. They are accomplishing all kinds of feats, making beautiful jewelry, exercising, photographing, writing, quilting, drawing, and painting.

Several years ago, I read a Chinese study which claimed that people who have chronic pain experienced a degree of relief while they looked at fine art. Is it logical that beautiful things could help us feel a little better? I thought about Keats "Ode to a Grecian Urn:" Beauty is truth, truth beauty, - that is all Ye know on earth, and all ye need to know.

Let's create something beautiful.

I don't play the piano too much these days. I was away from it quite a while, and now I've gotten involved in a fiction project. But I'll never forget how I played my piano even in the midnight hours. My husband, who should have been sleeping, encouraged me to play, forfeiting his rest to help me survive an unbearable night.

I'd love to hear about your distraction therapy or how someone helped you create a way to cope with trigeminal neuralgia, neuropathic or atypical facial pain, or TMJD. What you share may help someone else.

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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

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.

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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?

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

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