We wait. It is a part of life that can be terribly unpleasant. A popular theme, fiction, non-fiction, and plays have wait in their titles. Tom Petty, whose band Mudcrutch played at my high school dances and events, sings about how “The Waiting is the Hardest Part.” He’s right, and I love his song. The scriptures contain plenty of verses about waiting. A favorite comes from Isaiah 40:31. But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. I want to mount up with wings as eagles, but I do not want to wait. I have grown weary. Frustrated. Exasperated. Somewhat confused. This morning I was listening to Jeremy Camp’s song, “Dead Man Walking.” Most of us are familiar with the expression and how it refers to death row, a convicted person walking to his or her appointment with execution. I thought of all the times I begged God to let me die. I wanted to wake in His arms in Heaven, to be relieved of suffering. I had trigeminal neuralgia, and sometimes it was difficult to live through the next minute. I was a dead person living, barely able to walk and not able to talk. Long after the Lord healed me, I began to experience terrible pain from glossopharyngeal neuralgia. I had learned too much to pray for death. From my previous experience, I knew that God would not leave me in such terrible pain. I saw the present suffering as temporary. I had assurance of God’s love, and I was well acquainted with Hebrews Eleven. Now faith is confidence in what we hope for and assurance about what we do not see, states the chapter’s first verse. It happens to be the following verses, however, that fill me with faith. By faith, Noah built an ark and saved his family and himself from the great flood. By faith, Abraham, whose body was as good as dead, had a child with his aging wife, Sarah. Abraham became the father of the world’s largest nations. By faith, Abraham offered his son as a sacrifice, and the Lord honored his obedience by providing an alternative. By faith, Moses’ mother hid him, and he became part of the Pharaoh’s family. By faith, Moses led the Jews of out of Egypt’s bondage. By faith, the wall of Jericho fell, and the Lord’s people gained control of the city. Kingdoms have been conquered and the mouths of lions have been shut by faith. We recover by faith. We win by faith. Sometimes all we can do is thank God for an answer that hasn’t come yet, by faith. Whatever you and I need today might require waiting. Perhaps we will be used and abused in the process. I feel weary, and you might, too. But by faith, we are more than conquerors. By faith, we ask for more strength. By faith, we walk, not to death but to life.

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 mypillow.com. 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?

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?

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?

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?

Resources: clothing to shield your face from cold wind

Yesterday morning, I watched the Today show and noticed some fabulous clothing items that seem useful for people who have trigeminal neuralgia. They are made by Loki and have adjustable masks for the face. One of their jackets is pictured above.  If you like Loki's "morf" pullover hoodie, you can find it on their website Loki clothing.

If you'd like to know about the shield that is pictured, it can be purchased at Grainger products. Grainger products

I added a new resource September 21, 2012. Here is the link to that page: http://kathytaylortrigeminalneuralgia.blogspot.com/2012/09/affordable-winter-head-and-face.html

If anyone has another product or resource, please let me know. It looks as though a warming trend is coming our way. Take good care.

Have you visited my website? www.withgreatmercy.com

In the midst of the storm

We had a long, cold winter and so many people who have trigeminal neuralgia and neuropathic facial pain really suffered. Now that warmer weather allows these individuals to enjoy lower pain levels, barometric pressure threatens to deliver more discomfort.

When barometric pressure shifts suddenly, many people notice that their pain rapidly increases. No, it is not in your mind. No, it’s not fair. One summer Florida experienced four hurricanes. Three of them came through my area, and the symptoms of trigeminal neuralgia raged.

You may want to have a plan of action. Don’t hesitate to report the summer pain to your health care provider. It may be that medication can be adjusted or additional treatments can be given. Keep an eye on the weather report to help you know what to expect.

It’s not easy to remain calm in the midst of a storm, especially when pain is at its center. This is where the challenge lies.

So long ago when my pain got bad, I was unable to talk. I’d call my mother, and press three keys on the phone pad. She knew my signal, and she would come over to say a prayer with me and to sit with me.

It may help you to prepare for pain caused by weather fronts. Store your storm stash together:

Favorite Bible verses

Encouraging Quotes

Medication

Phone numbers of people who will offer you support

If you wear glasses, a light weight pair

Barometric pressure and neuropathic pain

It's been great to have some rest and to be able to control my environment. That means no more than 15 minutes at a time for my computer sessions, very little talking, and almost no chewing. There are other things on the list, but these seem to be the most important. Today my neurologist and I had a talk about how being able to control my environment and the ability to get better.

I mentioned that the one thing I could not control was the barometric pressure, and it seems to trigger the pain as much, if not more, than anything. During the times when the conditions are just right (should I say just wrong?), the nerve pain hits my mouth, jaw, and my neck. The foreboding sky, the one that looks like nighttime during the day, seems to rock my world.

After my doctor's visit today, I ran into the grocery store for just a couple of things. I live in a small town, and people are friendly here. The minute I walked in, a lady whom I had never met wanted to engage me in conversation about food. I knew better than to open my mouth. I had to get in and get out of the store and to let my jaw rest completely. There's no need to explain it to someone. They'll think I am crazy. Plus, if I am going to talk, I might as well talk to her about what she wants to talk about. After all, a zap is a zap regardless of the reason for having it.

When I was a kid, I remember a song called Silence is Golden. I didn't get it. As a loquacious individual, I have preferred a life filled with conversation laughter. Forget about interruptions, the more spontaneous, the better. That sometimes seems like another life, another person. I am thankful for my quiet times, and they far exceed the times that I spend talking to others. I'm still grateful to communicate, but I am even happier that I don't have to.

Grateful and thankful I remain, even in the midst of the storm.