Affordable winter head and face protection

My mom called me this evening (and if you have read With Great Mercy, you know how wonderful she is) to let me know that she had seen some clothing on the QVC channel that might be good for people who have trigeminal neuralgia. I would like to share this information with you. The scarf above is item number A82783.

You might like this one better. The differences are subtle, and you will get more details on the QVC site. The item below is number A82783.

For other options, you may want to take a look at a previous post, Resources: clothing to shield your face. For more ideas about preparing for winter, try this page: Cold weather. How to minimize its impact.

Stay well.

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?

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.

Have you visited my website?

Thank you

Thank you for staying in touch. Your emails, comments, tweets, and posts mean so much to me. Happy Thanksgiving. I am thankful for you.

Did yesterday's barometric pressure cause your pain to spike?

Yesterday my dentist's office called to confirm a cleaning for me, giving me 48 hours notice. I'm a "special needs" dental patient. People who have facial pain or jaw pain knows what that means. We can't always make it to our appointments because prolonged opening of our jaws isn't a good idea. Or perhaps we need our dentist to make an accommodation for us.

When the call came in, I said I'd be there. But I just called to reschedule. It's all about the weather.

Yesterday I took my mother to Jacksonville for a medical appointment. We commented on the fact that the temperature was projected to climb to 91. It seemed unlikely because the morning was soft and breezy, with a nice cloud cover. Nice? Yes. It was a long, humid, hot, steamy summer.

The day got warmer, but there was no steam. Mom and I discussed the fact that it didn't seem so hot. As we were leaving Jacksonville, my jaw began to hurt deep within its condyles. By the time I got home, the pain had intensified quite a bit,  ripping into my ear and down my neck. My right jaw felt as though it wanted to lock shut. I incresed my Baclofen (a prescription muscle relaxer), according to my doctor's instructions, and it helped.

The weather report showed a huge front, low barometric pressure covering most of the country. "That's it," I told my husband.

Today I have heard from others whose pain was active yesterday. It's good to have an explanation. It doesn't make the pain any lighter, but it helps to know that others can validate our experience and that a scientific cause actually exists.

I am thankful to feel much better today. I'll be talking more about the situation with my jaw later because it has everything to do with forgiveness, procedures gone wrong, and how we cope with practitioners who insist they are right even when their techniques have caused us pain.

Did your pain spike yesterday? Are you better today?

I invite you to visit my website, www.withgreatmercy.com

Easy chew recipe: apple crisp

Fall is here, and although the Florida weather has taken another turn for warm and humid, I've been hankering for some apples. I cooked up this recipe today, trying to minimize sugar, fats, and chewing. If chewing hurts, you may want to avoid this recipe. It's possible that you could pulverize the sauteed apples in a blender to get them to a no-chew consistency.

3 cups finely diced red delicious apples
1 tablespoon Smart Balance light buttery spread
Pinch of stevia (or sugar) and a pinch of cinnamon



1/4 cup ground walnuts
3 tablespoons brown sugar or sugar in the raw
1/4 teaspoon cinnamon
2 tablespoons flour


1 tablespoon water

Peel and dice apples into small pieces as shown.

Saute them in buttery spread for five to seven minutes over medium heat. Stir as they cook. I sprinkled mine with a dash of cinnamon and stevia for extra flavor. When they have been cooked until they are soft, place the apples in a one-quart casserole dish.

 before baking

In a separate container, mix finely ground walnuts (I chopped mine in my Shake and Take), flour, brown sugar (or Sugar in the Raw), and 1/4 teaspoon of cinnamon.  Toss the mixture evenly onto the apples. Sprinkle with the tablespoon of water.

Bake at 350 degree heat for 30 minutes. Serves three.

This would be great topped with whipped creme, but I can't afford the calories. For more recipes (easy or no-chew) please use the google tool at the top of my blog.

Have you visited my website? With Great Mercy

Cold weather: minimizing impact

The Boy Scouts say it best: be prepared. What does this mean to someone who has trigeminal neuralgia or neuropathic facial pain?

Summer offers some people who have trigeminal neuralgia and other types of face pain a reprieve. Sometimes it's hard to imagine (and who wants to remember?) the suffering that occurs. No one wants to think about the possibility of severe pain returning, but the past two winters have been tough ones. So let's think about what can be done to help should this be another frigid season.

Before the winter approaches, have a talk with your family and friends. Talk to them about the rough places, the times when the pain reached your spirit, not just in your face.  Tell them what might have made the tough patches better, and ask them if you could have done something differently to help make the situation easier.

Ask your physician about a permit for accessible parking. Explain what it feels like when the wind hits your face. When you get the permit request signed, go to the issuing office before the harsh weather comes. For more information, please visit this entry: trigeminal neuralgia,parking lots, and wind. You may also want to take a look at some resources to shield your face from the wind. .

Have a Plan B for the Holidays. Although it is a festive time of the year, Thanksgiving, Christmas, Hanakkuh, and New Year's Eve fall during the colder months.

If you're the person who cooks, think about what you can do to make the dinner simpler. Ask people to bring or casserole or dessert. And have an alternate plan just in case you aren't well enough to cook that day.

Simplify gift giving. This will mean different things to different people. Maybe it will mean ordering things via the Internet or shopping at places that offer gift wrapping. It could mean fewer gifts.

For every day life, have things handy to simplify your life. Write directions to your home or other gathering places so that you can send them through email, fax, or snail mail rather than explaining them on the phone. People who experience pain when they talk know the importance of having information available in writing. Consider text messaging for your cell phone if you don't have it.

Schedule automobile work, home maintenance, and routine medical and dental visits before the cold weather hits. Stamina is often an issue for people who have face pain, and you'll want to have the fewest amount of responsibilities possible.

Make a list of important phone numbers or emails. Keep them with you as well as in a convenient place in your home.

Have cold weather attire handy.

If you do something to help you prepare for the cold weather, I'd love you to share it with us. God bless you.

Have you visited my website? www.withgreatmercy.com

Trigeminal neuralgia, face pain, and emotions

As someone who has counseled people with facial pain, I understand that it is not uncommon for someone's emotions to reach a nadir. It doesn't matter if it's my pain or the pain that belongs to someone else. So I am always concerned when I hear that someone with facial pain has emotional issues. Of course we do. What others take for granted in every day life has been taken from us, and no one seems to understand the intensity of the pain. Except the people who have it...

I wish that I could explain to the world what it is like to be unable to communicate orally with others and to not know sign language. E-mails and text messages have been some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we humans with facial pain can communicate orally but other times we cannot. We aren't dependable, regardless of how much we would like to be.

Pain of any type can bear on our emotions. Face pain can cause a person to have bad breath and poor dental hygiene (no brushing for days on end sometimes), robs a person of the ability to share a kiss, and going out to eat is just unthinkable. When people experience this much isolation, pain, and disability... well he or she just may get emotional.

Why some people think that the emotional issues cause the pain, I'll never know. Perhaps it's because they have never experienced disability. I've always thought that the world would be a more compassionate place if people could experience trigeminal neuralgia or other types of face pain - just for a day.

Several types of medical issues cause face pain. It could be trigeminal neuralgia, myofascial pain, neuropathic pain, or a jaw problem. These things travel along the trigeminal pathway, and they have a life of their own. We don't know when the pain will come or go. We just know that we are out of commission until it settles down.


If you get emotional because of facial pain, let me reassure you that it's normal. Take good care of yourself. If you are able to talk, you may want to see a counselor. But you may not be able to talk...

God bless you.

Opening up

Most people who have trigeminal neuralgia and other types of neuropathic facial pain have experienced quite a bit of rejection. It happens because people who have not experienced such mysterious and excruciating pain find our explanations to be incredulous. They just can't believe it's possible.

Here's something else to consider. If this is terrible thing happening to someone else, it could happen to them. Denial is easy.

Think back to your earliest days with this disability. Was it difficult for you to believe that such pain could come out of nowhere? So difficult to describe? Mere talking can cause the electrocution-type pains to erupt, making it easier and easier not to talk about the terrible predicament.

We withdraw. We go into our own world, and we feel alone but we aren't. It's not just us and the television.

Today I am watching Julie and Julia, a movie I've seen before. I've seen it before, and I love the story. Julie blogs away while she works through Mastering the Art of French Cooking by Julia Child. She starts with no followers, but she quickly gathers an audience. It's the beginning of Julie's success.

If we take a look back, though, we see that she opened herself up to anyone who had access to a computer and could read in English. That's risky, and it's what we bloggers do.

When I wrote With Great Mercy, I opened myself up, telling how I thought the Lord had forgotten me, and then later learned how He much He cares. I really hadn't known the extent of His love until I reached out for His mercy.

At the time I didn't know others who have trigeminal neuralgia, but I knew they were out there. If I wanted to write something to help others, I would have to be transparent. It's a scary thing, but transparency is makes someone believable. The author's authenticity gives the reader someone to relate to. 

If you have no one who understands the depth of your pain, I encourage you to open up to someone. Step out of the box of isolation that often defines the world of someone who experiences so much pain. There are ways to do this: a support group, a prayer group, or a professional counselor. If you don't have a trusted friend, feel free to contact me via email.

Trigeminal neuralgia turned my life upside down. It turned a drama teacher into a rehabilitation counselor, and lukewarm Christian became one who wanted every day to get closer to God.

Has illness caused your life to change? Did something good result from it?

You'l be seeing me

Write from the heart. That's what I told my students a few years ago. It doesn't matter if you're writing fiction, poetry, or a factual presentation. Present facts as facts, fiction as fiction, and opinion as opinion and you can't go wrong.

Here are the facts: I hear from someone with trigeminal neuralgia or facial pain every day. I thank God for this fact because I am given the opportunity to pray with someone, to lend support, and to be a friend. I am thankful for you.

Now how about some fiction? I've been reading more of it lately, and I am disappointed with much of the Christian fiction on the market. I'm looking forward to the next book I'll begin, Healing Stones. It looks promising.

Opinion: There's no better place to write than on my recliner, where my two toy fox terriers like to snuggle with me. They'll be helping me with my next entry, part two of Green Olive Tree. It's coming right from my heart.