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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A medical decision I'd like to undo

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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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

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/

A no-chew recipe: low fat "mashed" potatoes

A pot full of mashed potatoes?

When I was having pain from trigeminal neuralgia, I ate some really fattening things. One of them was mashed potatoes. I didn't really like them before I got sick, but they quickly became a staple of my diet. Because they were (notice were not are) high in saturated fat, they weren't a good choice. It's easy now to make some great potatoes that aren't low in fat, contain protein, and still taste great.

Sometimes restaurants served "smashed potatoes," meaning the skins are on. In the picture, you can see I left them on after cleaning them well. If you are having difficulty swallowing or in a high degree of pain, you may want to remove the skins. I like to leave mine on because of the vitamins and minerals they contain. Here's the simple recipe.

4 cups sliced raw potatoes (any variety, sliced approximately 1/4 inch thick)
1/2 teaspoon minced garlic (optional)
1/2 cup nonfat Greek yogurt (you can use more)
3 tablespoons Smart Balance buttery spread with flax seed oil
1 teaspoon Sea salt
1/2 teaspoon fresh ground pepper


Put potatoes in two quart sauce pain, add water and garlic, bringing the potatoes to a low boil. Cook until they are tender. Drain. While potatoes are still hot, add Greek yogurt and buttery spread. Sprinkle with salt and pepper.

Serves 4 to six. Hope you find it enjoyable. My husband loves this and he's never had a facial pain or jaw pain issue.

Use the search button right above this entry to search for more recipes on my blog or find a fish recipe here. No chew Fish De Lish

No chew Fish de Lish recipe

Nutrition can be a concern for people who have pain in their jaw areas, whether it is from trigeminal neuralgia, neuropathic facial pain, or a jaw disorder. We hear about spices and how they are great for our health, so I developed this recipe that’s so soft and requires little chewing. I use thawed cod loins, but tilapia and other types of fish are suitable. If you use another fish, the temperature and time may need to be adjusted. The marinade becomes a sauce, making this dish easy.

Fish De Lish

1 juice orange squeezed with pulp or 1/3 cup orange juice

½ teaspoon minced garlic

½ teaspoon dried cilantro

pinch of ginger powder

1 tablespoon Smart Balance Light Buttery Spread

Bring the items above to a boil in and remove from heat. In a pan to be used for baking, place the thawed fish and cover with the marinade. You’ll need to keep it in the refrigerator marinating a couple of hours or longer. At some point, you’ll want to turn the fish over so both sides will be flavored with the marinade sauce.

When it’s time to cook the cod, place it in a pre-heated oven at 400 degrees F. It will need to bake 10-15 minutes, until it is flaky. I turn mine over in the marinade sauce after 5 or 6 minutes.

Then it’s ready to serve. The sauce is enough for 3-4 cod fillets.

Information below about the herbs and seasonings come from http://www.anniesremedy.com/herb_detail18.php

It is believed: *

* When cilantro is taken in a lightly cooked form it causes the body to excrete excess mercury.

* Ginger is an excellent digestive, aiding in the absorbtion of food, and elimination of gas and bloating. Ginger stimulates circulation so it is good for cold hands and feet.

* Garlic helps to lower hypertension, serum triglyceride and cholesterol levels. Both garlic and onions help thin the blood by discouraging platelets from sticking together.

I hope you will enjoy this nutritious recipe. Use the google search bar at the top of the blog to find more recipes on this site.

Believe: no pain, no fear

Can you imagine your life without facial neuralgias or TMD? After pain has been around a long time, it becomes difficult to remember what it is like to “live a normal life.”

I remember when my bed became my home. Hope was gone, and I was preoccupied with why God would not let me die. I wanted to escape the pain, so I prayed constantly to die. Visualizing myself as a well person was a difficult thing to do. Sometimes the seconds seemed like eternity as the pain “electrocuted” the right side of my face and my right eye. During these times, I visualized Jesus. It wasn’t long before my prayer changed.

As the Lord began to pour out His tender mercies, I gained the courage to say another prayer. “Lord help me live. Let me be free from this pain so that I can help others.” Hope returned, and I knew that better days were ahead. It was still difficult for me to picture myself as a healthy person, but my relationship with Jesus Christ had grown. I thought more about Him than I thought about me.

Faith is a wonderful thing. It transcends pain and sorrow. It gives one the courage to believe. I believed that trigeminal neuralgia would leave me. Through God’s grace, I fought the fear of the pain itself. Every day I felt that I was closer to being free of trigeminal neuralgia.

Then one day as my mother and close friends gathered around me, the pain left. The fear was gone. The Lord had intervened.

Since then, I have had plenty of challenges. My jaws have caused more facial pain, but I am thrilled to say that I am doing so much better. Six months ago, it was difficult to imagine myself doing 50 minutes of cardio, but now this is a reality. I can chew and talk, things that seemed impossible just six months ago.

The Lord gives each of us a measure of faith. It might be dormant in your life, but it is there. Don’t be afraid to visualize yourself as a well person. You have nothing to lose but fear and pain. God bless you.

Experiencing and Recognizing Loss -Disability

Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us.

I'd like to digress a little bit and address the word loss. In school we learn not to use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.

Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about.

Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it.

No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair.

Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive.

So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income.

I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses.

If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate.

The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us.
We're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you?

There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process.

I'd love to hear from you, about your losses. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com

The Zilla Zone

It's been really great to hear from so many people about your being able to relate to the Facezilla episodes or just plain old trying to eat out. It's so good to know that we do not walk the journey by ourselves. I'm not discounting the times that we feel alone or the times when everyone leaves us to be alone with the pain for a while.

Wouldn't it be nice if we could create a pain-free zone? And while we are doing it, let's include all types of pain: physical, (yes! no pain anywhere) mental (no PhD for me!), emotional (How do you mend a broken heart? Ask the Bee Gees)or financial (Bailed out and debts cancelled).

Let's think about this: day after day without any type of pain in us or around us. That's the kind of life that I would love to have, but let's face it: pain is part of life. All we can do is deal with it the best we can and try to make decisions about tomorrow to the best of our ability. The decisions can seem endless, overwhelming, gut-wrenching.

For people who have face pain, whether it is oral or trigeminal or neuropathic: can you get a second opinion? If you have a procedure and the statistics say 5% of people will experience numbness, are you willing to find out what facial numbness entails? How long it might last? Are you prepared to be one of the 5 percent?

Are we willing to pay out of pocket for procedures that might actually make the pain worse? It happens often. It happened with my jaw. By the grace of God, I'm not angry about it. Someone tried to help me, but it didn't work.

OK so I have written a book. I have a website and a tiny faith-based forum where Believers pray for one another. I am a certified rehabilitation counselor, and I have been the director of patient services for tna, the facial pain association. But none of it gives me my money back, erases the pain, or guarantees me that tomorrow I'll live in a no pain of any kind zone. None of it makes me a giant, who can tower above these experiences just because I have insight into them. I'm someone who makes a lot of mistakes, someone who still needs more energy than I currently have. I'm someone who depends on God to get me through the day. Any day.

I thank God that I have no pain today, and I whisper a prayer for everyone who is experiencing facial pain. No one deserves it. Definitely not you. Please be kind to yourself.

Facezilla or no Zilla?

I am thankful to say that there have been no Facezilla episodes since my last post. Well, almost none. Yes, I've had pain, but I've been at home most of the time. I've been kind to my husband and family.

So let's tackle the almost incident right now. My husband had to go out of town to the doctor, and I rode along with him. We live in a small town, and it always (always?) good to get away with him. NOT always: when I am ill, it's much better to stay home. The day of the appointment, I could feel the pain building but hoped it would go away. When we left, the pain was bearable. I had done my hair, make-up, dressed up a little. I didn't want my effort to go to waste.

The appointment was done, and it was time to have an early dinner at one of my favorite places to eat, Longhorn Steaks. I don't like steaks because I don't like them. It's a good thing. Chewing a steak would be impossible. But there is one thing that people with orofacial pain should know: Longhorn has very tender chicken, salmon, wonderful baked sweet potatoes, and other things like cooked apples that are easy to chew. It's one of the easiest places to eat, in my opinion. By the time we arrive at Longhorn, the pain is in high gear.

Before I could eat, I knew I would have to take some medication. That meant I had to have something to drink. I order water with light ice, but the water was colder than cold. Because every syllable sent crashing pain through my jaw and sphenopalatine area, I didn't try to explain things to our server. I took a sip and cringed from the pain. Then I took the extra ice out and put it on the table. Did that look crazy and rude? You bet it did, but this thought did not occur to me until a couple of days later.

I order coffee, saying that I need to drink something hot. I ask for fresh decaf, but say that if it is not available, please bring me the coffee that's ready right away. The server brings a mug of coffee. She forgets the creamer. Trying to keep my fat content down, I ask for milk. After all, the cream isn't there anyway. Well, by the time the milk arrives, the coffee is no longer hot. I ask for fresh. Then it takes a while longer, quite a while longer to get coffee that's hot.

The entire point of the coffee was that something hot actually helps the pain. I wanted to drive the hurt into a lower gear before my food arrived. Finally, fresh hot coffee is placed on the table for me. I'm so hungry and so delighted that the hot liquid has arrived. At this point, I would have been happy with hot water. Carefully, I drink the coffee. It's in a mug that's so heavy it causes more pain.

When the symptoms rage, I drink from plastic or styrofoam cups. Sometimes I cannot tolerate a glass or a cup because it places so much pressure on my mouth and consequently my jaw. But now I have sent the server back and forth, back and forth with no explanation. After all, what college girl is going to want to know about such a puzzling condition. Aren't these things just in someone's mind, anyway?

I drank about half the cup. I ate my dinner. Without even trying or without losing my cool, I was a Facezilla.

It's so good to stay home!

Flossing

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

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

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

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

Raining mercy

"The quality of mercy is not strain'd, It droppeth as
the gentle rain from heaven Upon the place beneath."

Shakespeare, The Merchant of Venice

Have you ever asked for mercy? So many people with facial pain have. I am one among them. Although I have received an immeasurable gift of mercy, I once again have to contend with pain.

When my pain begins I think about God's mercy and know that it will see me through once again. I also think about the barometric pressure and take a look at the sky. It hasn't deceive me yet. The clouds have formed, tightly interwoven, yet not a drop of rain is in sight. Pressure builds. Sometimes this condition continues for hours. Sometimes Heaven's rain relieves the build-up, but other times the clouds seem to agree to disagree. Then the blue sky begins to emerge, but no rain falls.

It's been a few years since I can remember so much rain. We're blessed with it this year. We've needed it so badly. Yet this year, the pressure is unkind. I have so many days in succession where I just cannot function. My wellness continues to follow the rain patterns. I long for fall, hoping for another measure of mercy.

It's so easy to compare the rain to tears. It's been done so many times that the subject is somewhat trite. Yet I think about sorrow and disappointment and how often they build into an internal pressure that results in tears. It's from my internal experiences that I can understand the effect of barometric pressure and the relief that rain often brings.

I'm learning to be content with my current state. I'm not happy about the pain, but it's a relief to know that on the bad days - even those that lately have stretched into weeks - I have few responsibilities and can first take care of myself. What makes it even better is that so many people who have received my help now offer me theirs. Mercy cannot be defined; it has to be received.

The Drawstring

When I was a child, I had a Chatty Kathy doll. I'll never forget when the dolls became available. Not only did this doll have my name, but she also had my hair, my face, and my freckles. Being the loquacious child that I was, it was fun to have a partner who would talk with me. I just had to pull her drawstring, and I did so often.

It wasn't long before Chatty Kathy's drawstring broke from overuse. It wasn't abuse, just my enthusiastic desire to talk with her. I kept the doll long after she was mute. I wish I still had her today because I cherish the memory of her.

Now I would be content just to hold this cherished item for a few seconds. I've learned that it isn't the spoken word that is so important. With my jaw so often dysfunctional, I rely on touch, typed words, and eye contact. They've become more meaningful to me than spoken words. Back in the day, I could talk all I wanted, even if my doll could not. Now I understand her so much better.

Chatty Kathy's value was limited once the drawstring broke, but not so for humans who cannot speak. Having a disability does not mean that we are worth less. Our value holds. Not everyone will see this about you, but it is true. As individuals with disabilities, we must believe in ourselves. We must know that although our abilities have changed, our value has not. It is the core - the melding of heart, spirit, and mind - that forms the essence of an individual. We don't have to allow ourselves to be discarded like a child's broken doll.

One of the best ways to overcome depression that can be secondary to an illness is to network with others who have similar experiences. Not only will you have the opportunity to be supported, but you will find yourself able to support others. Our strings might be broken, but our spirits can be revived.

Families and pain

What do we live for, if not to make the world less difficult for each other? - George Eliot

So much has been written about caregiver support and the stress of caring for someone who has a disability or illness. I am thankful to have a supportive family. My mom will drop everything to help me when the jaw and face pain is so terrible. She did the same thing when I was having pain from trigeminal neuralgia. Life would be so much more difficult without her, my husband, and my daughter.

It is not unusual for us to hear about the toll that an illness takes on a family, but I want to look at this from another angle. Let's think about the stress - stress that triggers more pain - that can arise from family situations. So many of my friends still have children in their teens or away at college. The process of individuation causes stress not only for the child who is anxious to leave childhood behind but also for the parents and siblings.

We hear so often that trigeminal neuralgia is a disorder that normally occurs at or after the age 50. Yet I hear more and more younger people with it, especially mothers with children at home. These mothers are charged with caring for their children, but this tremendous pain is difficult to understand. Consider how difficult it is for most teens to put themselves in their parents shoes. Is it possible for a teen to have empathy for a parent who has a mysterious and totally debilitating pain? I think it is possible. We all want to have our needs met, but what happens when the mother or father's needs have become so great?

Communication is the key to learning how to meet one another's needs. This issue is also at the core of successfully navigating through the individuation process. Growing up isn't easy, but having pain isn't easy either. Parentification occurs when children take on too much responsibility for meeting their parents needs. It can rob childhood.

Loss caused by pain not only affects the individuals who have but also has a great impact on those who love the person who has the disability. Discuss needs that have been created by disability as well as needs that are no longer being met. It can lead to a greater understanding of one another and acceptance of the changes. Solutions arise when people determine to find them, when they advocate for the family member who is ill and when they look for constructive ways to meet their own needs.  

There are no easy answers, but I really believe that love covers a multitude of sins. Speak love, even if it has to be written or put into a text message. Love is what I live for. It is stronger than pain.

How has love helped you through an illness?

Have you visited my website?

Emotions and face pain

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 are some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we can communicate orally and 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 these issues. 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.

Recently I had to make an important decision. I knew I was too ill to think rationally. I tried to explain this, but I was pushed to make the decision. My response was emotional because my pain level was high. Now the decision is made, and I am glad it is behind me. I get emotional when I cannot speak, brush my teeth, open my mouth, or stop the pain.

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...

What I really like about prayer is that I can talk to God without saying a word. He understands why I am emotional in times of pain. I am thankful for my faith in God.