How can I make them understand?

How can I get my spouse, coworker, boss, friends, or family to understand? This is one of the most common questions I hear regarding the nature of trigeminal and glossopharyngeal nerualgias. The answer, regardless of who asks it, is the same. You cannot make someone who has not contended with this type of pain to "get it."

You can, however, ask them to accept the reality of your situation. Before we discuss that, let us talk about why we should concentrate on their acceptance rather than their understanding.

We ask the people around us to have empathy for us, to put themselves in our shoes. I ask you to do the same. Remember when you had never heard of trigeminal or glossopharyngeal neuralgia? Such pain would have sounded incredulous, and indeed it is.

In all my conversations about these cranial nerve disorders (before, during, and after my working at TNA, the Facial Pain Association) I have never told anyone about my first exposure to facial pain. I was young, in my 20's. I was eating dinner at a friend's house, hanging out in the kitchen with another guest. She explained that she had a nerve in her face that caused her horrible pain when she...

I have to use an ellipsis in the previous sentence because I cannot remember what she said after that. Although she spoke with a calm demeanor, her message terrified me. I left the kitchen, telling myself that she must be crazy. I hoped she was. To believe she might be sane meant that this horrible thing could happen to anyone, even me. I refused to entertain the possibility. But now I ask myself how many people walked away from that perfectly nice woman, leaving her alone as I did.

When we ask someone to accept our situation, we are asking them to do something easier than to understand. We apply the formula from the movie What about Bob? Baby steps, baby steps. Let us discuss some of them.

Present the individual with a concise explanation of trigeminal or glossopharygeal neuralgia, depending on which disorder(s) you have. For people who have atypical or neuropathic facial pain, find the most definitive information you can. Be selective, using information that describes your symptoms. Do not give more than a full page of text to read. Allow them time to digest it. Then expose them to factual presentations of personal experience.

Find an audiovisual presentation. These are on YouTube and other sites, such as The Facial Pain Association's. Attend a webinar or support group meeting together. If possible, go to a conference hosted by TNA, the Facial Pain Association or a similar group.

Some people will refuse to accept the plight of an individual who has facial pain, even if they love the person who has the disorder. Hardheartedness is not something we can change in another person.

Counseling, if he or she will go, can open the door for acceptance. If you pursue this route, go alone first to ensure you have an empathic counselor who will research and accept your disability. Make sure he or she knows how to pronounce it. It can provide some validity for you.

Everyone who has facial pain needs an advocate. It does not have to be someone who understands, but it must be someone who accepts.

I would like to hear from you. Please tell us what helped someone accept or understand your pain.

God bless you.

Have you visited my website?

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?

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?

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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.

Have you visited my website?

Cold, Christmas, and Comfort

For people who have trigeminal neuralgia, Christmastime can deliver a double whammy. The pain caused by the cold can be paralyzing, making work and social interaction burdensome. Sometimes just surviving the pain is the best one can do.

Just when we're expected to enjoy "Walking in the Winter Wonderland," we are forced to retreat. The best time of year sometimes becomes the cruelest. And this is true for many, not just for people who have facial pain. The pressure of expectations weighs heavily on our minds, hearts, and spirits.

We're not going to be perfect, our friends and family aren't going to be, and perhaps the holiday will be less than idyllic. And that's okay. The key to surviving the imperfection is to find solace.

Finding comfort in one's situation can seem impossible, but it is doable. One way to start is to trim our list of activities. If you've gone to the neighbor's Christmas party and taken your special homemade divinity every year, it may have become an expectation. Expectations equal pressure. When we decline an invitation to a gathering, we often hear and sense others' disappointment. But we can get past it.

We must take care of ourselves. People tell one another to do this all the time, but often the phrase is uttered without considering its meaning. This Christmas, let's embrace the message.

Take care of yourself.

To fend off depression that can result from facial pain and as well as holiday stress, make a plan. Take a mental inventory of things, tangible and intangible, you find comforting. Write them down. Find them if you don't know where they are. Be prepared to spend a few hours alone when the rest of your family is socializing.

Need some suggestions? Make a list of music for your I-Pod especially for this time, a list that may include anything from tear-jerking songs to happy holiday tunes. You've experienced a full gamut of emotions in your life, and it is acceptable to feel them now. Believe you will have better times, less pain in the future. Unless we believe things will get better, they won't.

Put your favorite DVDs by the player. Brew a pot of your favorite tea or coffee. Peruse your favorite photo album. Prepare an online list of the funniest videos you've seen on YouTube, and have them ready to make you laugh.  Have something to read that's easy and brings you comfort.

Now is the time to schedule ways to connect with people we love. If your family or friends are distant, make a date to text them if it is painful to talk. If not, make a date to Skype or call someone special.

Recognizing our limitations also helps us let ourselves off the "expectation hook.' Sometimes getting out or pushing through can help us feel better, but sometimes it makes pain worse. No one can make these decisions for you. You are the best judge, the best predictor of the outcome. It's important to resist the pressure of going along with everyone else if you believe the activity will trigger more pain. Stand your ground: take care of yourself.

As individuals, we find solace in different ways. What brings you comfort? Your comment may help someone else.

Have you visited my website? www.withgreatmercy.com

Decisions We Cannot Undo

When I worked as the director of patient services for a facial pain organization, it was not unusual to receive a phone call, an email, or to talk face to face with an individual who regretted having a procedure.  The discontent was usually directed at two people: the physician or health care practitioner who performed the deed and at the person who underwent the treatment.

It's so easy to blame one's self, to want to go back and undo it. People often torment themselves with wondering why they made the decision.

Let yourself off the hook. Consider this:

* You were taking action to improve your situation.

* You were in terrible pain and made a decision that seemed sound.

* You underwent an approved procedure.

Other considerations are possible. Maybe you spoke to someone at a facial pain organization or someone who had the same procedure and got better. Perhaps you are responsible for someone else's care and did what you could in hopes of being able to help others. Maybe you felt as though you could not continue to endure the pain.

If we saw someone enduring terrible pain, we would expect them to do something to try to relieve it. That's what you did. You're not guilty, not foolish, not rash. When we look at numbers, it can be difficult to measure the success of a procedure. Even if only one percent of treatments have side effects, what if we are the one?

We think positively, moving ahead with the course of action. We want to function again, to have a life, a career, and to be productive. But if things go wrong, it's difficult to continue to "think on the bright side of life." But thinking in a positive manner continues to be a powerful tool, regardless of the extent of suffering. Most of us with facial conditions have walked through some dark places, times when positive thoughts eluded us. We've got to move ahead, find hope again.

Whatever went wrong, it's not your fault. Accepting that will help you deal with circumstances that surround your decision, circumstances such as Anesthesia Dolorosa, increased pain, or numbness. It also means letting go of anger and bitterness that arises with the practitioner and possibly the fact that we have paid that person for a procedure that didn't help us.


We've done the best we can do. 

I've never had a procedure for facial pain, but I had one for my jaw. The procedure, including travel and lodging, was about $25,000 out of pocket. And my jaw got worse. Much worse. It's not easy to deal with, and it gives me insight into regret. I had more than one opinion about my jaw, and I saw the best of the best. Maybe I'll blog more about it at another time.

We want pain to go away. It's even more important to "get rid of it" when those around us don't understand it's severity. Being angry with one's self can cause depression, frustration, and lack of confidence. Forgive yourself.


Just a shout-out: I want to thank the Lord for helping me through trigeminal neuralgia. 


Have you visited my website? www.withgreatmercy.com

Another about face

A couple of weeks ago, I wondered why the blemishes on my forehead, chin, nose, and cheek had not gone away. After all, I'm fifty-something and should be past this stage. I didn't question why I had broken out, considering the amount of stress caused by family illnesses lately. (Plus, I'm having stress caused by a jaw problem, but I'll discuss that in a future entry.) And we've had a Florida summer, hot and humid.

I took a good look at the skin eruptions in the magnifying mirror, and I decided it needed to be checked. It looked a little like a bubble. Years ago, a similar bubble on my face had been basal cell carcinoma, something I discuss in With Great Mercy.  A couple of days after discovering the blemish, my husband took me to see my dermatologist in Jacksonville.

With a quick glance, my physician diagnosed Rosacea. What? Shouldn't this have occurred when I was younger? Why isn't my face red? The doctor explained that it often shows up in middle age, doesn't necessarily cause redness, and that my mild case could be easily treated. Thankful that the situation was benign and my outbreak in early stages, I took a sample of Finacea and the accompanying literature he offered me. The pamphlet listed some of Rosacea's triggers. Stress is one. Hot, humid weather is another cause. The information given by the makers of Finacea advises people who have the skin irritation to stay away from hot baths, hot tubs, and saunas.

There goes one of my stress relievers, my big tub with jets. Isn't it amazing, how the very things that help us can also harm us?

After using the product a couple of weeks, I've noticed quite an improvement. Being a rehabilitation counselor, I like to read the fine print to see the contraindications. But this time I didn't. I've stayed in the "patient zone" and out of the advocate's area. I really wanted to give the medication a chance. Now that the outbreak is clearing, I'm hoping to be brave enough to read the fine print. The fine print can be like a commercial for a medication, one whose side-effects can frighten a person out of trying it.



After having experienced the pain of trigeminal neuralgia and a terrible jaw issue, I'm thankful the diagnosis wasn't something that required a complex decision. If you would like more information on Rosacea, the Mayo Clinic has some good information.

Every day I say a prayer for people who have facial pain. God bless you on your path to healing.

Have you visited my website? With Great Mercy

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

The Americans with Disabilities Act

Thank you for your comments and emails about how fighting the pain caused by wind. Yes, trigeminal neuralgia and other facial pain conditions are disabilities. It's important to know why. I'm going to provide a link where I pulled the information for this entry. Let's take a look at how the Americans with Disabilities Act (ADA) defines disability:  

"Disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment."

Knowing what the ADA means by impairment is essential to understanding what a disability is.

"(1) The phrase physical or mental impairment means --

(i) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological; musculoskeletal; special sense organs; respiratory, including speech organs; cardiovascular; reproductive; digestive; genitourinary; hemic and lymphatic; skin; and endocrine."

Trigeminal neuralgia is a neurological disorder, mentioned above: "anatomical loss affecting one or more of the following systems: neurological."

If we back up to look at how the ADA defines a disability, we see that the impairment must substantially limit a major life activity. Here is the definition for a "major life activity:"

 "(2) The phrase major life activities means functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working."

Do you often have difficulty caring for yourself (cooking, brushing your teeth, entering an environment because of the wind)? Speaking? Working? 

Invisible disabilities, such as trigeminal neuralgia, are valid. Here's the link to the portion of the ADA quoted. Scroll down to Sec.36.104 Definitions Americans with Disabilities Act

Take good care!

Have you visited my website? Click here

Trigeminal neuralgia, parking lots, and wind

Summer is here, making it a great time to prepare for cold weather that promises to arrive a few months from now.

On "handicapped" or accessible parking permits, we see a wheelchair. Yet most people who have these permits don't use a wheelchair. In fact, they may look perfectly healthy. And that's "permissible." After all, most people who have trigeminal neuralgia have been told that they look just fine. But it's not about how we appear to others.

Taking care of one's self sometimes means overlooking the scrutiny of the neighbor, a family member, and the guy in the parking lot who doesn't know us. It means self-advocating. As a certified rehabilitation counselor, I am here to help you find ways to advocate for yourself.

Every state in the U.S. has a unique form (usually found at the tag office) required for applicants of  "handicapped" or accessible parking permits. Most of the applications have a category for a physician to make a selection, saying that the individual has difficulty walking. Don't exclude yourself from this group. If you have trigeminal neuralgia, you have a neurological disorder that can cause a number of issues, including difficulty walking.

Think about this issue: when the wind hits your face and causes electrocution-type pains to slice through it, do you have difficulty walking? One time I asked a gentleman this, and he explained to me that he walks backward through the wind, allowing the back of his head to shield the wind. As he does this, he places another jacket over his face to protect him from the windy blasts. It's not a story that surprised me, but it saddened me. People who have invisible disabilities have rights, plenty of them. Sometimes we just have to fight a little harder to get the things we need.

Walking through a parking lot backwards is dangerous, and so is walking through one with a jacket over one's face. Cars come through parking lots, sometimes at a fast pace. Drivers are distracted with phone calls, text messages, and many other things. Most parking lots have precast concrete bumpers in some of the parking slots. It's easy, if our vision is obstructed, to stumble over them.

Accessible parking helped me get my master's degree. I had to park far from class. I was young and looked healthy, but I wrapped my face up in big scarves and went to class. I parked right outside the class door, making it possible to traverse the path from my vehicle to the building.

Do you have difficulty walking when the wind blows? If you have trigeminal neuralgia, the answer is probably yes. And the pain may be year round because the wind can howl any season.

You may want to talk to your doctor about accessible parking this summer, before your pain escalates and before flu season begins. A good way to approach this might be to make a few notes about what you do to protect yourself as you disembark from your vehicle and make your way across a parking lot to see a doctor, to buy medicine, or to get groceries. Sometimes a phone call to a doctor you have established good communication with will be sufficient. Other times, you may want to make an appointment. And if your physician says "no," ask another one.

Stay safe.

Have you visited my website? Click here.

Surviving the dark places

Pain often brings isolation, and it is no one's fault. The person who has an illness doesn't feel like talking, socializing, or maybe even getting dressed. You have to cope with the stress that wreaks your body. And others don't know what to do.

Even if you, in all your pain, reach out for others, you may still experience social isolation. One reason is that people do not want to get to close to suffering. It's frightening to think about illness and how it could happen to them. Their lives are already stressful, and they withdraw from you.

You feel alone, wondering how God could allow you to suffer. Has he left you?

No, God has not left you in your time of distress. Perhaps the pain seems bigger than God, but it is not. Be assured that He is with you. If you need assurance, take a look at Psalm 138:


⁸ If I go up to the heavens, you are there;
       if I make my bed in the depths, you are there.
    ⁹ If I rise on the wings of the dawn,
       if I settle on the far side of the sea,
    ¹⁰ even there your hand will guide me,
       your right hand will hold me fast.
    ¹¹ If I say, "Surely the darkness will hide me
       and the light become night around me,"
    ¹² even the darkness will not be dark to you;
       the night will shine like the day,
       for darkness is as light to you. 

In your pain and aloneness, cling to things and people important to you. They may feel as though they are part of your past, but consider them part of your future.  Fight the good fight of faith: worship God, talk to Him, and focus on God's ability to bring you through this. Be prepared to be lifted up by the Lord, to rise on the wings of the dawn.

No chew Fish de Lish recipe

Nutrition can be a concern for people who have pain in their jaw areas, whether it is from trigeminal neuralgia, neuropathic facial pain, or a jaw disorder. We hear about spices and how they are great for our health, so I developed this recipe that’s so soft and requires little chewing. I use thawed cod loins, but tilapia and other types of fish are suitable. If you use another fish, the temperature and time may need to be adjusted. The marinade becomes a sauce, making this dish easy.

Fish De Lish

1 juice orange squeezed with pulp or 1/3 cup orange juice

½ teaspoon minced garlic

½ teaspoon dried cilantro

pinch of ginger powder

1 tablespoon Smart Balance Light Buttery Spread

Bring the items above to a boil in and remove from heat. In a pan to be used for baking, place the thawed fish and cover with the marinade. You’ll need to keep it in the refrigerator marinating a couple of hours or longer. At some point, you’ll want to turn the fish over so both sides will be flavored with the marinade sauce.

When it’s time to cook the cod, place it in a pre-heated oven at 400 degrees F. It will need to bake 10-15 minutes, until it is flaky. I turn mine over in the marinade sauce after 5 or 6 minutes.

Then it’s ready to serve. The sauce is enough for 3-4 cod fillets.

Information below about the herbs and seasonings come from http://www.anniesremedy.com/herb_detail18.php

It is believed: *

* When cilantro is taken in a lightly cooked form it causes the body to excrete excess mercury.

* Ginger is an excellent digestive, aiding in the absorbtion of food, and elimination of gas and bloating. Ginger stimulates circulation so it is good for cold hands and feet.

* Garlic helps to lower hypertension, serum triglyceride and cholesterol levels. Both garlic and onions help thin the blood by discouraging platelets from sticking together.

I hope you will enjoy this nutritious recipe. Use the google search bar at the top of the blog to find more recipes on this site.

The sting

…It stings like a viper. Proverbs 23:32

When the pains of trigeminal neuralgia began to invade my body, I thought it was a tooth. I knew nothing of cranial nerves and had never known anyone who has facial pain. Besides that, it felt like a tooth gone wild, a tooth with a evil in its pulp.

If you’ve experienced this sensation, then you know what it’s like to wonder what in the world has happened. Many people have root canals or a tooth removed trying to “fix” the pain. Often times, though, more dental work makes the pain worse.

Having no name for the pain makes it difficult to explain the severity of it to others. It’s common to be frustrated with others’ lack of understanding. What’s even more universal is for someone to be upset with the individual who is experiencing trigeminal neuralgia or another type of neuropathic facial pain.

In the earliest days of TN, my (ex) husband told me that if I would just gargle with Listerine, the pain would subside. He may sound like a cruel man, but he’s not. He simply didn’t understand.

The very act of swooshing something around in the mouth caused my own pain to get worse. It hurt because an unhealthy trigeminal nerve can be disturbed by facial movement. And until a person has had this disorder, facial movement (smiling, talking, chewing, etc.) isn’t something we think about. It’s automatic and painless.

The pain caused by these simple activities is impossible for someone else to understand, at first that is. After all, it’s difficult to comprehend even if you’re the person who is experiencing it. Spouses, family, and friends need time to process what’s happening to the person they love. Education is a key.

One key to dental hygiene is finding products that don’t contain alcohol. It can cause a terrible sting, worse than a viper. If you are looking for a way to accomplish daily oral health activities, there are several brands of alcohol-free mouthwash. That doesn’t mean that swooshing isn’t going to hurt, though. Be careful, and take good care.

Cold weather and trigeminal neuralgia

As cold weather blasts through many parts of the country, my friends with trigeminal neuralgia are having episodes of facial pain. My prayers are with everyone who is currently having this experience.

I remember last year at this time. I was hearing from so many people whose pain had been triggered by the cold weather. In fact, three months of cold weather had left many people both exasperated and exhausted. Because I know first-hand the excruciating pain of trigeminal neuralgia and glossopharyngeal neuralgia, I have great empathy for anyone who is suffering with these disabilities.

Last year I was working for TNA, The Facial Pain Association when the cold weather blanketed the country. To communicate with so many people who had facial pain was very humbling. If you talked to me or emailed me during that time, please know that your story – your plight – touched me. I may not know your name, your face, or even your voice, but I know your struggle.

The severity of this pain can transcend the physical body and permeate the human spirit. It can cause a person to lose hope, to feel alone, and to wonder how he or she can keep going.

Last year I was experiencing excruciating pain of my own. I had nerve pain in my face, but it was caused by my jaws. What triggered it the most was talking, and talking was part of my job. I don’t talk so much these days, and I am experiencing a season of quietness. The quiet is like a good night, soft and comforting. It leaves me feeling rested and refreshed.

Don’t neglect your spirit while you weather the storm. My prayer is that everyone with facial pain will find relief from the pain and will be rejuvenated. I found strength when I searched the Bible for a way to cope with the pain.

To those of you who are reading With Great Mercy, I hope you will be blessed.

Loss Part 2: Initmacy

I can’t think of anything that affects intimacy as profoundly as face pain, especially when it affects the mouth. If someone can't practice good oral hygiene, romance or being close to someone may be one of the first things that go out the window.

So many times I have covered my mouth when someone has entered my home to speak with me. I try to be prepared, but surprise visits can make the Boy Scout's guide impractical. To get myself ready for planned encounters with others, I’ve used plenty of Biotene mouth wash. It’s made without alcohol, and it never bothered me to use it. Recently I tried Crest's alcohol-free mouthwash, and I was impressed. It costs much less than Biotene. The pain, though, was not nearly as acute when I tried the Listerine, so it’s not actually comparing oranges to oranges. There’s nothing, though, that compares to the old-fashioned practice of tooth-brushing and flossing. I have had months on end that my mouth never ever felt clean. I thank God that I am able once again to brush my teeth and floss.

The pain caused by jaw problems, trigeminal neuralgia, and neuropathic facial pain can stop physical intimacy dead in its tracks. In my opinion, there is nothing more romantic than a kiss from my husband.

How do you kiss someone who has trigeminal neuralgia? Very gently. If the pain is on one side of the face, approach from the other side. Talk about it if you are uneasy. If the person you loved has winced when you attempted a kiss, don’t take it personally. Your love interest may have looked as though he or she is a deer caught in the headlights. The thought of kissing can be downright scary for a person with facial pain. With conversation and tenderness, a way to share yourself with someone else is possible.

Nighttime caresses can also be challenging. I remember using a separate sheet and blanket. When my husband tugged on a sheet that we shared, it would sometimes brush up against my face. That’s all it took, brushing lightly against my face to cause the electrocution-type pains. The sensitivity to the pain and its intensity is almost impossible for others to understand, and that is a threat to intimacy of any kind: the loss of trust.

If someone doesn’t accept the plight of a person with facial pain, trust can diminish or even dissolve very quickly. I’ve never talked at length to anyone with trigeminal neuralgia who has not experienced fear of the pain. It’s important to talk about the fear and to be someone who can be trusted.

Sometimes people with trigeminal neuralgia have eye pain. It’s terrible. I remember feeling as though my eye would pop out. I didn’t want anyone or anything near my face. I didn’t want a hug, but I wanted to be close. My husband’s arm around my waist meant everything. A friend who put her hand on my back or shoulder instead of hugging me was cherished.

What do you do if there have been misunderstandings about trying to get close? One way to rebuild trust and intimacy is to practice touching with your friend, family member, or spouse. Another way is to communicate in writing if the person has difficulty talking. Send an email, write a note, use text messaging. No one wants to feel alone. Don’t let the pain win. Be close in spite of it.

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