Sunday, December 18, 2011

All I want for Christmas

At this time of year, it's not uncommon for someone to ask me about an appropriate present for an individual who has trigeminal neuralgia or another form of neuropathic facial pain.

You may want to purchase clothing that will help shield your friend or family member's face from the painful cold. If so, you can find some helpful products here.

I don't often endorse products, but I have discovered one that helps me with pain caused by TMJD and cervical issues.

Like many people who have trigeminal and glossopharyngeal neuralgias, I have struggled with finding a pillow. For quite a while, I had a rattan pillow that helped. You can learn more about it here.  I could not find a replacement. Without it, the agony escalated.  One night when I awakened from the pain, I turned on the television and saw informercial about "MyPillow."

I've bought useless things as a result of watching cleverly marketed products via informercials. Have you? Yet this advertisement spoke to my core, and I decided to give it a try.

The first pillow I ordered was a "red" pillow, and it was actually too "tall" for me. I didn't think this could happen because the lack of support for my cervical area seems to cause the problem. Even with this pillow that didn't "fit" me, I noticed that my jaw would open when I rested my head on it, solving the problem of clenching my teeth at night. I knew I was getting close to a solution.

I called the company, and they sent me a "green" pillow. It was too shallow. I sighed and called the company again, and they moved me to "blue," the size between red and green. What really impressed me is this: they told me not to give up because they will make custom size pillows for an individual. But the blue one works just fine. It gives me the support I need and alleviates the pain that crept in night after night. I've been using it several weeks.

Just as the pillow provides support, so does its inventor. I've been charged for postage and the pillows only once. The company told me that they understand that individuals might not order the right item the first time. They send prepaid return shipping boxes and labels, making it simple for someone in pain to feel better.

A good night's sleep is a wonderful gift.

You can learn more about the MyPillow here. Although I give this item my endorsement, I am not affiliated with the company in any way. I don't receive commission from any sale that results from my recommendation.

Merry Christmas and happy holidays.

Sunday, November 13, 2011

PillowGate: Losing and finding a place to lay one's head

For reasons too private to discuss, I left my home a mere two weeks after the delivery of the wonderful Stearns and Foster mattress I blogged about this past summer. I took my rattan pillow with me, and I managed to sleep peacefully at times, have nightmares at other times, continued to function, and to dysfunction as well.

The day of moving into my own apartment approached, and my friends (especially the one who had given me a place to stay) held their breath in anticipation. After all, I had been telling them I would feel so much better when I settled into my own place. But what I didn't know was that the person who had gifted me with the cherished rattan item would suddenly decide she didn't want me to have it anymore.The weekend I moved, I sent it back to her.

PillowGate, dubbed as such by my daughter, ensued.

Because I have helped other people look for a rattan pillow, I knew that finding one is virtually impossible. I got angry. I yelled. I cried. Most of all, I lifted things out of necessity that someone with neck and jaw problems shouldn't do. It's difficult to enlist the help of family and friends and then stand by and watch them work. Plus, I had been working out. Confident that the .0001 inch of muscle added to each bicep would allow me to lift things without injuring myself, I trudged on.

The first night in my new place I couldn't sleep because my cervical and jaw pain level was so high.  Night after night I swapped pillows all night long. Finally one morning at 4:00 I gave up, got up from the recliner, and tried to figure out how to work a Swiffer wet jet minus necessary batteries. I turned on the television and brewed a pot of Joe. When I heard someone talking about cervical issues, TMJD, and pillows, I thought I had gone back to sleep and was having another nightmare. But wait... I could smell the coffee!

I walked closer to the television and watched the graphic explaining how this pillow would help my neck. I looked up at the ceiling, wondering if God might be talking to me. Thinking that perhaps He was, I called the toll-free number to They were experiencing unusually high call volume. Hmmm. Could there be more pillow-fighting athletes out there, other than my friends who have trigeminal neuralgia and facial pain? Perhaps. Not wanting to be in pain any longer than I had to be, I purchased the "firm" pillow via Internet.

Just three days later, it arrived. I followed the instructions by putting it in the dryer for a few minutes before I used it. After a few nights, I realized that a pillow that was actually too high existed. It gave my head and neck great support, but too much of it. I called MyPillow and spoke with a representative and learned that I had ordered an item sized for a linebacker. She helped me select another size, and I am hoping that it will be delivered tomorrow.

I'll let you know how it goes. In the meantime, I am using an accessory pillow. Some nights are better than others. Those of us who experience facial pain know a pillow is something to lose sleep over.

To my friends and family who offered tons of love and support while I made one of life's most difficult decisions, thank you. I love and appreciate you. Even more thanks go to the Lord, who watched over me in my frailty and angst.

March 2013 note from Kathy: more than a year later, I can say that MyPillow has made quite a difference in cervical and jaw pain. My mom also purchased one, and she has noticed a marked improvement in her comfort level. We have the firm pillows with blue writing on their tags. To my knowledge, these cannot be purchased from anywhere but directly from the company. 

Have you visited my website?

Saturday, October 8, 2011

Trigeminal neuralgia: ABC news report

Has the ABC report of trigeminal nerualgia (TN) and microvascular decompression (MVD) surgery given you hope?

I'm encouraged not only by the fact that the debilitating condition has received recognition by a major network but also that people who suffer have had a moment of validation. Let's take that moment and internalize it, making it a part of who we are: strong, sane individuals who suffer and want to get well.

Several of my friends, none of them who have experienced facial pain, have contacted me about the ABC news episode. They wonder if I am aware of the procedure. When I was the Director of Patient Services for TNA, the Facial Pain Association, I discussed the surgery several times each day with individuals who were looking for relief.

No, I didn't have the surgery. One of the reasons I didn't was that I was afraid. Although the statistics show great results, not everyone's pain is relieved by the MVD. But don't lose heart; MVD surgery is not the only resource.

After I was properly diagnosed, I searched the Internet looking for help. I ran across message boards where people talked about their complications and expressed their remorse for having this procedure. I was paralyzed by fear, afraid to move forward with treatment. When the electrocution-type pains struck, I prayed to die. They were in all three divisions of my nerve: my right eye, my cheek, and my jaw.

What I didn't know was that people often post on their worst of days, never returning on the good days to say that they are better. When they pain is relieved, they often move on with their lives and prefer not to think about the trauma they have experienced. For the people reading the blogs and message boards, it looks as though there is there is no hope. But there is.

ABC News encourages people who have trigeminal neuralgia to make sure they have a physician who believes them. I cannot emphasize enough the importance of this. It's part of the validation process. Many individuals who have facial pain have been dismissed as having emotional problems. It's important to know that depression is secondary to trigeminal neuralgia. Another thing you want to consider is that the MVD attempts to treat the situation that causes the pain. Other procedures, often called less invasive, cause damage to the nerve.

Other important things to note is that some neurologists do not have experience in treating facial pain. Neurologists prescribe medicines and can refer you to a neurosurgeon if you are interested in a procedure. Not everyone is a candidate for an MVD, and not every surgery is successful. It's important to discuss this possibility with a neurosurgeon. One thing that may give you insight into what you can expect after the procedure is to ask what constitutes a successful surgery in the neurosurgeon's opinion. You may want to find out how many MVDs the physician has performed in the past year.

Most of all, it's important to do your homework. To learn about the many types of treatment, you can read an excellent book called Striking Back. It discusses the many types of facial pain and their treatment options.

If you are wondering why God allows people to suffer like this, you may be interested in With Great Mercy. It's a personal account of how TN affected every area of my life and how my faith pulled me through the dark times.

I've told hundreds of people, maybe thousands, that the world would be a better place if everyone experienced this excruciating pain for just one day. No one has asked why because we know. It gives us greater compassion and empathy for others. It makes us thankful for the blessings we once took for granted. We so desperately want those around us to understand why we cannot talk, brush our teeth, or experience the slightest breeze without being "electrocuted." But maybe - just maybe - reports like Diane Sawyer's will help others relate to us.

ABC: thank you!

Have you visited my website?

Tuesday, July 5, 2011

Happy ending: the search for a perfect bed

Almost anyone who has shopped for a bed knows how confusing the process can be. I decided a  traditional mattress was the best choice.

The second part of the journey (see part one) began at Sears in Jacksonville, Florida. Going from Sealy to Serta to Stearns and Foster, the brand most comfortable was Stearns and Foster. The store had at least three models from which to choose.

Here's the caveat: each bed was different on the left side than the right. One side was labeled "plush" while the other was "firm." It was confusing.

At Ashley Furniture, the beds were also different on the left side than the right. But even more disconcerting was the music being played at 10:00, a rhythm appropriate for Zumba dancing. Upon my request the volume was lowered, but I couldn't focus on sleeping when my impulse was to jump up and move my hips.

At Haverty's we found Stearns and Foster mattresses that were the same on the left as on the right. A gentleman named Jonathan Chila led me from one model to the other, including a "silver" bed. It's pictured above.

The silver model (which may be called something different) cradled me, relieving pressure from my neck and jaw when I laid on it.  I bought it. The morning after my first night's sleep, my neck felt better than it had in the morning in years.

Although I have slept well, the rattan pillow I've been using to sleep is now too hard. I use it when I prop up in bed to read. It's taken several nights to get the right combination of pillows, but the beauty of the new bed is that my perfect pillow has turned out to be just a firm, everyday pillow. One.

I made a pricey choice, but I stop and think about the money I've spent on my medical care, and the mattress is worth is worth the cost. That's my experience. What's yours?

Have you visited my website?

Sleep: Who's got my number?

So many people who have trigeminal neuralgia and other types of facial pain experience discomfort when they lie down. We fight with our pillows, and sleep can be difficult to attain.

Finding my right pillow took years, and if you are interested in learning more about the rattan pillow that works for me, you can find it using the Google search bar that is embedded in my blog. But comfort requires more than a pillow. One's bed is also important.

My daughter and her husband love their Sleep Number Bed, so I decided to give it a try. I visited the store several times, trying to get just the right mattress, the perfect number. My first night, I awoke several times. My right arm kept going numb. I have a lot of different symptoms, but this was my first encounter with arm numbness.  The next morning, I ached from head to toe: head, neck, shoulder, hip, knee, and ankle.

According to the purchase agreement, I had to wait 30 days before sending the bed back. It was packaged up, and in all I spent approximately $380 for shipping. Then I waited more than 30 days for our refund- quite a few more days.

I've noticed that the air mattress beds, similar to Sleep Number, are being stocked in hotels across the country. Now before I book a room, I call the property to ensure that a traditional mattress is there.

I'd like to reiterate that my daughter and her husband are happy with their Sleep Number bed. But I had terrible discomfort three days after spending one night on this type of system. Perhaps there is a perfect number for me, but I am not willing to go through the pain of finding it.

My money was refunded and we have purchased another bed. I'll be blogging about that experience next.

I'd love to hear about your experience. What type of mattress works for you?

Have you visited my website?

Wednesday, June 15, 2011

Opening the prison door

Pain can be a prison. It holds us captive, rendering us unable to overcome circumstances and to live a full life, and powerless to reclaim the freedom we once knew. Once trigeminal neuralgia or other forms of neuropathic facial pain strike, we may realize that we didn't fully appreciate our lives prior to the onset of the disability.

We look for answers, proclaim ourselves not guilty, and know we wouldn't wish this type of torment on anyone, even our worst enemy. We call for a guard, and he or she comes, but they do not unlock the door for us. Medications, procedures, and alternate treatments don't always work. We're trapped.

Maybe you've begun to fear that you have received a life sentence, that the pain will never leave. Hope becomes elusive. Without hope, we cannot go free.

Don't give up. Make your release a goal. Don't accept a life - or a death - sentence.

Coaches and teachers have teach their students to "keep an eye on the prize." I believe it is appropriate to adopt this way of thinking. Picture yourself living a normal life. Don't lose sight of it. Step by step, visualize yourself in better health. Hold tightly to things that you cherish.

I held onto my belief that the Lord would not "leave me" in such terrible pain; receiving a miracle was my goal. By the time my prayer was answered, I had  experienced quite a bit of isolation. I didn't really know how to relate well to people any longer. I was grateful. I asked what could I do to help someone else, something I could do from home.

Soon I became involved with Prison Fellowship Ministries. I started as a penpal, and the experience mushroomed. As years went by, I volunteered to teach classes at a prison.

My original penpal and I have been writing four years now. In fact, he has become like a son to us. When I first wrote him, I explained trigeminal neuralgia and how it was like being in prison. I sent him a copy of With Great Mercy. When he read it, he understood that prison comes in many forms.

We are experiencing some glitches in our visitation recently. There is nothing we can do about it, but we understand that God knows no limits. If you'd like to offer a prayer on our behalf,  we'd appreciate your support.

Most of all, I'd like you to know that my prayers are with you, that your release date will come soon.  

Not guilty: that's you.

Have you visited my website?

Thursday, May 5, 2011

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. 

Have you visited my website?

Wednesday, May 4, 2011

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.

 Have you visited my website?

Sunday, April 24, 2011

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. 

Have you visited my website?

Friday, April 8, 2011

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.

Have you visited my website?

Monday, March 21, 2011

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.

Have you visited my website?

Thursday, March 3, 2011

My aunt

I have an aunt, my mother's younger sister, who is in ICU. Her prognosis is not good. I'm praying for a miracle, but I have confidence that the Lord knows best.

I won't be writing anything new in my blog for a while, but feel free to contact me. I'll get back to you as soon as possible.

I'll post updates in the comments below. Thanks for your prayers, your support, and your love.

Sunday, February 27, 2011

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?

Have you visited my website?

Friday, February 18, 2011

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?

Have you visited my website?

Monday, January 31, 2011

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.

Tuesday, January 25, 2011

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 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.

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Wednesday, January 12, 2011

A pillow that reduced my pain: Part Two

The rattan pillow I've been using is placed atop a queen/king sized pillow (in the blue case) pictured above.

For part one of this post, click here.

I've tried to find the product online, but I haven't found a source selling them individually. If you search for "rattan pillow," you will find them being sold in quantity by wholesalers in Asia. It would be great to have a resource for people who have facial pain. Vendor, if you (or if you know of someone) who will sells the item individually, please contact me by email. (withgreatmercy at yahoo dot com)

Be prepared for some initial discomfort if you purchase a rattan pillow. It is hard, and it will take a couple of weeks (at least) to become accustomed to sleeping on it. But it stabilizes my neck and jaw and I had my life back soon after I began sleeping on it.

The pillow is approximately 15 inches wide, 4.5 inches deep, and 9 inches vertical. After I had slept on it a few nights, I took it into my neurologist. The moment he saw it, he realized I had found relief.

Please note that I was not having trigeminal neuralgia pain when I began using this item. My facial pain stems from issues with my jaw and neck.

Be sure to use a place case over the pillow so your face won't come in contact with the rattan. If you cannot get accustomed to the hardness of the surface, you may want to to place a very thin pillow or piece of foam rubber over it.

Those of us who have experienced facial or jaw pain know that what works for one person may not work for another. You may want to consult your practitioner before you try something new.

If you cannot find this item and are interested in something else, please see how my search continued and what I found. Click

Please let me know about your experience with facial pain and your search for the perfect pillow.

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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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Sunday, January 2, 2011

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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