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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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?

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?

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?

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?
 

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?

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?

Eye: the first division of the trigeminal nerve

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

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

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

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

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

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

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

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


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


Have you visited my website? www.withgreatmercy.com

Trigeminal neuralgia: the Valley of the Shadow

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

  

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

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

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


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

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


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

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

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

For more, please visit my website

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

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

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

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

1 teaspoon brown cane sugar
1/2 teaspoon minced garlic

1/4 teaspoon cumin
1/4 teaspoon sea salt

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

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

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

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

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

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

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

Have you visited my website? With Great Mercy ?

Thrill of Hope

It's been a while since I have entered something in my blog, but I will be back. It's been good to take a break.

I want to wish everyone a wonderful Christmas. To those with face pain, TMJ pain, glossopharyngeal neuralgia or trigeminal neuralgia: cling to hope. Don't give up.

Thank You, Jesus, for all You have done for me.

O Holy Night
John Sullivan Dwight

O holy night! The stars are brightly shining,
It is the night of Our dear Saviour's birth.
Long lay the world In sin and error pining,
'Til He appear'd And the soul felt its worth.
A thrill of hope The weary world rejoices,
For yonder breaks A new and glorious morn.

Fall on your knees! O, hear the angels' voices!
O night divine, O night when Christ was born;
O night divine, O night, O night Divine.