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?

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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?

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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.

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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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