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With Great MercyFind hope when you have trigeminal neuralgia and other types of pain.Kathy Taylor's Blog |
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If you would like to respond to Kathy's blog, you may contact her by e-mail. January 18, 2010 But I am like a green olive tree in the house of God: I trust in the mercy of God for ever and ever. Psalm 52:8. To understand why this verse might be significant for a person who experiences so much pain, it is necessary to know the characteristics of a green olive tree. This robust tree can live for centuries, even in dry, barren, and rocky places. To harvest the olives in Biblical times, the green olive tree would be beaten with sticks to knock the fruit from its branches. In spite of that, the tree would continue to produce new fruit. The strength of this tree comes from its roots, which go deep into the earth. The green olive tree’s roots are so deep and so strong that they survive even if the trunk is burned or cut down. The roots will send up new shoots, and they will bear fruit. The green olive tree knows how to survive and thrive even in the harshest of environments.
I cautioned the ladies to preserve some of the fruit that they bear for people that God will send to them. It’s so easy to get depleted, to have every piece of fruit (or every bit of energy) taken from us. Today’s demands are heavy: careers, children, aging parents, ministries, volunteer activities, and church functions. The list is endless, and our heavy obligations can leave us with no time or energy to help someone that the Lord puts in our path. At the time I wasn’t working, but a few months later I returned to the work force. Last March, I went on a business trip to meet with a group of people who were experiencing facial pain. A couple of hours before I departed, I was gripped with terrible pain. It radiated from my jaws and into my face. The pain left during the last leg of the flight, but when I arrived at my destination I was exhausted. I enjoyed the visit, and it was soon time to return home to Florida. I was on a tight schedule, with an appointment the day after my return. I learned that my schedule was going to be much tighter than I expected. The weather caused flights to Florida to be cancelled for the day. I left the airport and went to a nearby hotel. The first thing I did when I walked into my room was take the Gideon’s Bible from the desk. I don’t ordinarily open the Bible and read it where it falls, but on this day I was desperate. I wanted a word to calm my frustration. I looked at the open page and began to read Deuteronomy 24:20. Tears fell down my cheeks as I realized that I had ceased to bear fruit. I had nothing left to give to strangers, to the fatherless, or to widows. In fact, I had nothing to give to my family. I was always in need of their strength and support. I surveyed my life that day and realized that my roots had not found the nourishment they so desperately needed. In Gainesville I had not found a church that I could call “home.” I was living away from my family and saw my husband only on the weekends. I missed him terribly. My noisy neighbors got home from work every morning at 3:00 a.m., and sleeping through the night was difficult. Worst of all, my own pain continued to increase. Had I forgotten about God? No. I still read my Bible each morning. I was sad because life had become so difficult. I wondered why I was having so much pain in my jaws and neck, and I longed for home. I faced this fact: circumstances had beaten me down. That day in the airport hotel, I asked God to restore me. Because I had experienced trigeminal neuralgia, I knew that that the current pain was very different. It wasn’t long before I began to notice some things that pointed to the root of my facial pain. For example, my teeth, which had always been straight, had become crowded and crooked. In the diagnostic process, the facial pain and jaw dysfunction grew worse. I could not continue working, but I had answers about the root of the pain. Having a diagnosis gave me some relief, but it did not make the pain stop. It was clearly caused by my jaws, which were often locking shut. I resigned from my job and stayed home. Several months went by before I began to feel better. My body rebelled if I moved around a lot, so I stayed still. Very still. Sometimes the Lord wants us to be still, to wait for Him. Sometimes we have no choice. It was while I stayed still that I could really focus on Jesus. My roots began to receive the nourishment they needed. Jesus is my source of strength, the One who helps me grow. Although I was overwhelmed and beaten, my roots had not died. Your roots are still alive. You can also experience growth and restoration. We are like green olive trees, and the Lord wants us to bear fruit. We willl be able to help the widow, the fatherless, and the stranger once again… with God’s help.
January 12, 2010 But when Jesus heard it, he answered him, saying, Fear not: believe only, and she shall be made whole. Luke 8:50 Can you imagine your life without facial neuralgias or TMD? After pain has been around a long time, it becomes difficult to remember what it is like to “live a normal life.” I remember when my bed became my home. Hope was gone, and I was preoccupied with why God would not let me die. I wanted to escape the pain, so I prayed constantly to die. Visualizing myself as a well person was a difficult thing to do. Sometimes the seconds seemed like eternity as the pain “electrocuted” the right side of my face and my right eye. During these times, I visualized Jesus. It wasn’t long before my prayer changed. As the Lord began to pour out His tender mercies, I gained the courage to say another prayer. “Lord help me live. Let me be free from this pain so that I can help others.” Hope returned, and I knew that better days were ahead. It was still difficult for me to picture myself as a healthy person, but my relationship with Jesus Christ had grown. I thought more about Him than I thought about me. Faith is a wonderful thing. It transcends pain and sorrow. It gives one the courage to believe. I believed that trigeminal neuralgia would leave me. Through God’s grace, I fought the fear of the pain itself. Every day I felt that I was closer to being free of trigeminal neuralgia. Then one day as my mother and close friends gathered around me, the pain left. The fear was gone. The Lord had intervened. Since then, I have had plenty of challenges. My jaws have caused more facial pain, but I am thrilled to say that I am doing so much better. Six months ago, it was difficult to imagine myself doing 50 minutes of cardio, but now this is a reality. I can chew and talk, things that seemed impossible just six months ago. The Lord gives each of us a measure of faith. It might be dormant in your life, but it is there. Don’t be afraid to visualize yourself as a well person. You have nothing to lose but fear and pain. God bless you. Have you read With Great Mercy? Januay 5, 2010 Yes, and the Lord will deliver me from every evil attack and will bring me safely into his heavenly Kingdom. All glory to God forever and ever! Amen. 2 Timothy 4:18
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. For me it was the fear and depression that evolved into a war of the spirit. Some people call it spiritual warfare. The Lord took this pain from me, but when I began to work again another type of face pain showed up. Regardless of the type of face pain you are experiencing, I encourage you to nurture 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. I learned that the Lord is truly my Deliverer. He has brought me relief from TN, GN, and severe facial pain caused by insufficient growth of my jaws. To those of you who are reading With Great Mercy, I hope you will be blessed. Have you read With Great Mercy? September 21, 2009 Cast all your anxiety on Him because he cares for you. 1 Peter 5:7 If you have trigeminal neuralgia, neuropathic or atypical face pain, or orofacial pain, chances are that you have experienced anxiety. Some people think of anxiety as nervousness or a feeling of panic. It can escalate when negative thoughts or "what ifs" become frequent or won't go away. It's important to mention these feelings to your physician or medical practitioner. Face pain can storm like a thundercloud, bringing "what ifs" into our lives. It's really important to recognize anxiety when it begins to manifest itself. There are a number of things that can be done. Your physician may want to prescribe an anti-anxiety medication. If you are hesitant to take medication for anxiety, you may want to see a counselor who can help you with cognitive behavioral therapy (CBT). CBT works for many individuals because it helps them train their thought patterns and does not introduce more medication into the body. We hear a lot about "natural" approaches to illness. Some people get relief through massage or other types of integrative medical techniques. Herbal remedies are also sometimes helpful. Sometimes seeing an upper cervical chiropractor (UCC) can also help with anxiety as well as the face pain itself. Addressing anxiety is important. These feelings sends signals to the brain, and they can actually trigger more pain. Anxiety is common to people with facial pain. You're not alone in this journey. God bless you. Have you read With Great Mercy? September 11, 2009 I lie awake, lonely as a solitary bird on the roof. Psalm 102:7
Isolation can occur for a number of reasons. Because of the disability, we lose confidence in being able to interact successfully with others. Sometimes exhaustion plays a role in becoming isolated. Other times, we experience rejection from family members or other individuals who mean a great deal to us. Ridicule from co-workers or fellow students can also be a factor. After all, why would someone cover his or her face with a scarf on a day with wonderful cool breezes? Sometimes its the way that strangers react to us that can cause us to become discouraged. Social isolation can be overcome, step by step. One of the things that we can do is to join a support group for people who have pain. If there is not one in your area for facial pain, you may want to contact pain organizations such as the American Chronic Pain Association, The American Pain Foundation, or Rest Ministries. There are also on-line groups for people who are not yet ready to venture from home. If you are looking for a way to get out of the house, you may want to volunteer for an organization. Find one that will be really flexible with your schedule, and make sure that the activities don't trigger your pain. You can do more solitary activities like shelve books in a library or you can choose something more social such as volunteering at a church or school. I recommend that you ease into activities like this, working no more than two to four hours a week until you are confident that you can handle more. You may also want to avoid volunteering for one-on-one scheduled activities. If you are having pain at the time of the appointment, you may feel pressure to meet the schedule - not wanting to let the other person down - rather than taking care of your own medical needs. Pets can help us overcome isolation. Look for a group of owners who share your interests. You can usually do this through www.meetup.com or through your local ASPCA or Humane Society chapter. There's nothing I recommend more for someone who is socially isolated than becoming involved in a friendly church. For people with facial pain, this can be difficult. When I lived in Gainesville and was attending a new church, people would come to shake hands with me, smile, and chat. Sometimes It caused me a lot of pain to smile or to talk. I wanted to embrace the friendliness, but I couldn't. One nice woman asked me to go to lunch, but I didn't want to try to eat in public. Having lunch with someone involved two painful things: chewing and talking. If you are interested in going to church, you may want to see if the church has a visitation pastor or volunteer. You can meet one-on-one with this person to explain your situation, and they can facilitate your needs. At a small church, you may not find someone with this role, and this means you will need to contact the pastor. Whether it is volunteering, going to church, or finding a support group, write out your special needs - how to avoid your triggers. Make copies. Take them with you so that you won't have to explain it time after time to the new people you meet. If your first effort doesn't feel right, you have the opportunity to try again or to move on to another choice. Everyone needs support. These are just a few ways to overcome isolation. Tiny steps are usually the safest way to begin your journey back into the community. I am wishing you the most success. It may not be easy, but you are worth the investment. Have you read With Great Mercy? September 9, 2009 In his kindness God called you to share in his eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation. 1 Peter 5:10 Do you ever feel as though you are sitting on the sidelines of your own life? It's not unusual for people who experience pain and disability to feel as though they have somehow lost themselves. I remember not wanting to believe that I had changed, but I had. Many of my strengths had turned into weaknesses. Some of my abilities had become disabilities. I was in the middle of my life and didn't know where to go or what to do next. All I knew was that I didn't want to stop but had to. I loved teaching drama, but I had to let it go. Quick wit, the ability to concentrate, and physical prowess can seem to evaporate if the pain comes to stay. Medications to help facial pain can cloud our concentration, obscure our ability to respond quickly, and cause physical issues such as balance and sluggishness. Career and volunteer activities may become a drain instead of a challenge. If we have trigeminal neuralgia, neuropathic, or orofacial face pain, we may begin to Things that seemed so intrinsic - like a beautiful smile- now seem to escape us, things like a career or a desire to grow a family. The losses caused by pain can be distressing, but there is hope. Hold onto it. Don't let go. Finding the best treatment takes a while because of the idiopathic nature of the pain. What works for one person doesn't work for another. Medications that seem to turn us into "zombies" also require a period of adjustment. Ten years ago, when I started taking an anti-seizure med, the trigeminal neuralgia pain left. I slept like crazy for three months. Then the feeling of sleepiness left, and the pain stayed away. (Can I tell everyone how disappointed I was when I developed an allergy to this medication?)Another thing that takes time is prayer. We normally don't get answers overnight. A period of waiting is almost always involved. Hold onto hope. Hold onto your faith. Continue to wait. Waiting is one of the most difficult things we can do. Being in limbo places even more pressure on an individual who has experienced so much loss. It is important to remember this: we have changed but we have not lost ourselves. We have not become someone else. The challenge we face is learning how to make the best of our lives after we have experienced losses associated with facial pain. There are many ways to do that. One way is to address career concerns. Every state in the U.S. has a vocational rehabilitation program that receives federal funds. It's there to provide education or training for people who have disabilities. People with face pain qualify. Because trigeminal and neuropathic facial pain are rare, you might want to prepare information for the rehabilitation counselor who will interview you. Make a list of things that cause you pain, such as talking, sitting in air conditioning, or being in a noisy environment. If you are having issues caused by medication, list those also. If you are employed and want to stay with your company, the Job Accommodation Network (JAN) can help you and your employer make arrangements to help you stay where you are. JAN is part of the US Department of Labor. They have a website and a toll-free number. One important thing to focus on is what you can do, not what you cannot do. I've been in situations that were overwhelming. It's hard to recognize the need to make a change. Letting go doesn't mean losing. It can mean that we are going to find a new and better way. Call me crazy, but I think the world would be a better place if everyone were to experience trigeminal neuralgia for just one day. We'd live on a more compassionate environment. We'd have more empathy for others. People with face pain have learned how precious life is. It's something we can teach others. Even in the midst of our pain, we can help make the world a better place. I want to thank the Lord for answering so many of my prayers. When I lose one thing, He always gives me something better. It takes me a long time to recognize the blessing, but it is always there. Have you read With Great Mercy? September 3, 2009 Loss Part 2: Initmacy But then he fell in love with her, and he tried to win her affection with tender words. Genesis 34:3 I can’t think of anything that affects intimacy as profoundly as face pain, especially when it affects the mouth. Good oral hygiene is one of the first things that go out the window.
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, you can find a way. 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 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. Have you read With Great Mercy? September 1, 2009 And when she finds it, she will call in her friends and neighbors and say, ‘Rejoice with me because I have found my lost coin.’ Luke 15:9 Experiencing and Recognizing Loss -Disability. Let's talk about loss. Depending on who we are and what we have lost, the definition of it can change somewhat. If we are talking about a personal loss, we're trying to help someone truly understand our plight. That's when it becomes necessary for us to accurately portray what the loss involves. This is where the dilemma arises. Do we depart from our efforts to "think on the sunny side of life" and expose our inner bellies of pain and grief to someone else? We wonder if the other person can be trusted with our reality. It's a risk when we invite someone in to really hear the truth about the loss that is so personal to us. I'd like to digress a little bit and address the word loss. In school we learn not to Because loss is such huge subject, I want to write about it for a while. Today I'll try to tackle one of it's sub-topics: disability. It's a topic I can really get fired up about. Disability benefits are necessary for some people with facial pain. This is true for people with trigeminal neuralgia, orofacial pain, neuropathic facial pain, and face pain that has been named something else. I don't have to tell my readers why their pain causes dsyfunction and disability. They already know. Let's talk about what happens when we are forced to explain it to someone who has not experienced it. No one - absolutely no one - wants to have facial pain. I have talked to hundreds and hundreds of people. They're all interested in one thing: "How do I get rid of this?" So if you are going through a disability application process, whether private or through Social Security - you'll be asked to explain how your pain affects your ability to work. It's a fair question. But the answer isn't fair. Most people with facial pain do everything they can to make their lives as normal as possible, as enjoyable as possible. Those of us who understand that a mind-body connection (and that's MOST of us) exists want to think about things that encourage us to keep going. We want to think about the wonderful things we still have, even if the wonderful thing boils down to the fact that we are still alive. So what happens with the time comes to explain the pain to people who review disability claims? We have to reach into our minds and think about the loss, the things we cannot do but would like to do. We have to remember that once we identified highly with our jobs and our ability to perform. Whether we are in the business world, teaching a class, or counseling others, work is all about fulfilling expectations. To walk away from something that fuels our self-esteem and bolsters our identity is devastating. We lose a part of ourselves. We also lose income. I have spoken with many people who have lost their jobs, their homes, their medical benefits, their spouses, their self-worth. The list of losses goes on and on. Let's get even more personal: they've lost their ability to kiss, to speak, to chew, to swallow, to concentrate, to remember important things, to brush their teeth. It's difficult to stop naming the losses. If people are trying to cope with everyday life, chances are their losses don't live on the tips of their tongues. People who have pain are either trying to maintain their ability just to get through the day or trying to move on with their lives. Why bring up the losses that cannot be changed? Because we have a valid claim that we must substantiate. The thing I hate about the disability benefit process is that we have to justify being sick. It's much healthier for us not to think about it and to focus on the good things in life. But to get the money - which we deserve - we have to think of our worst case scenarios and expose our vulnerabilities. It's just not good for us. We feel so alone, like failures. But we aren't either one of those things. We are coping with something many people are afraid to understand. They don't want to let it sink in. After all, could it happen to them? Will they take the chance to identify with your situation? Probably not. You already know this, don't you? There's a time and place for everything, something else you already know. The time to make the loss and the pain clear is during the disability application process. It's not fun to share the pain. It's going to feel crummy, but you're surviving the pain, and you'll survive this process. I'd love to hear from you about your losses. God bless you. May you regain what you have lost. If you aren’t familiar with the parable of the lost coin, it’s a passage that I hold dear to my heart. Have you read With Great Mercy? August 30, 2009 If you need wisdom, ask our generous God, and he will give it to you. He will not rebuke you for asking. James 1:5 It's been really great to hear from so many people about your being able to relate to the Facezilla episodes or just plain old trying to eat out. So I’m not the only one who has lived in the Zilla Zone? It's so good to know that we do not walk the journey by ourselves. I'm not discounting the times that we feel alone or the times when everyone leaves us to be alone with the pain for a while. That’s a separate issue. Wouldn't it be nice if we could create a pain-free zone? And while we are doing it, let's include all types of pain: physical, (yes! no pain anywhere) mental (no PhD for me!), emotional (How do you mend a broken heart? Ask the Bee Gees)or financial (Bailed out and debts cancelled).
For people who have face pain, whether it is oral or trigeminal or neuropathic: can you get a second opinion? If you have a procedure and the statistics say 5 percent of people will experience numbness, are you willing to find out what facial numbness entails? How long it might last? Are you prepared to be one of the 5 percent? Are we willing to pay out of pocket for procedures that might actually make the pain worse? It happens often. It happened with my jaw. By the grace of God, I'm not angry about it. Someone tried to help me, but it didn't work. OK so I have written a book. I have a website and a tiny faith-based forum where Believers pray for one another. I am a certified rehabilitation counselor, and I have been the director of patient services for tna, the facial pain association. But none of it gives me my money back, erases the pain, or guarantees me that tomorrow I'll live in a no pain of any kind zone. None of it makes me a giant, who can tower above these experiences just because I have insight into them. I'm someone who makes a lot of mistakes, someone who still needs more energy than I currently have. I'm someone who depends on God to get me through the day. Any day. I thank God that I have no pain today, and I whisper a prayer for everyone who is experiencing facial pain. No one deserves it. Definitely not you. Please be kind to yourself. Tomorrow Bob and I celebrate our 14th anniversary. No matter what zone tomorrow brings, we'll be there together. Have you read With Great Mercy? August 8, 2009 Yes, just as you can identify a tree by its fruit, so you can identify people by their actions. Matthew 7:20 I am thankful to say that there have been no Facezilla episodes since my last post. Well, almost none. Yes, I've had pain, but I've been at home most of the time. I've been kind to my husband and family. So let's tackle the almost incident right now. My husband had to go out of town to the doctor, and I rode along with him. We live in a small town, and it always (always?) good to get away with him. NOT always: when I am ill, it's much better to stay home. The day of the appointment, I could feel the pain building but hoped it would go away. When we left, the pain was bearable. I had done my hair, make-up, dressed up a little. I didn't want my effort to go to waste. The appointment was done, and it was time to have an early dinner at one of my favorite places to eat, Longhorn Steaks. I don't like steaks because I don't like them. It's a good thing. Chewing a steak would be impossible. But there is one thing that people with orofacial pain should know: Longhorn has very tender chicken, salmon, wonderful baked sweet potatoes, and other things like cooked apples that are easy to chew. It's one of the easiest places to eat, in my opinion. By the time we arrived at Longhorn, the pain was in high gear. Before I could eat, I knew I would have to take some medication. That meant I had to have something to drink. I order water with light ice, but the water was colder than cold. Because every syllable sent crashing pain through my jaw and sphenopalatine area, I didn't try to explain things to our server. I took a sip and cringed from the pain. Then I took the extra ice out and put it on the table. Did that look crazy and rude? You bet it did, but this thought did not occur to me until a couple of days later. I order coffee, saying that I need to drink something hot. I ask for fresh decaf, but say that if it is not available, please bring me the coffee that's ready right away. The server brings a mug of coffee. She forgets the creamer. Trying to keep my fat content down, I ask for milk. After all, the cream isn't there anyway. Well, by the time the milk arrives, the coffee is no longer hot. I ask for fresh. Then it takes a while longer, quite a while longer to get coffee that's hot. The entire point of the coffee was that something hot actually helps the pain. I wanted to drive the hurt into a lower gear before my food arrived. Finally, fresh hot coffee is placed on the table for me. I'm so hungry and so delighted that the hot liquid has arrived. At this point, I would have been happy with hot water. Carefully, I drink the coffee. It's in a mug that's so heavy it causes more pain. When the symptoms rage, I drink from plastic or styrofoam cups. Sometimes I cannot tolerate a glass or a cup because it places so much pressure on my mouth and consequently my jaw. But now I have sent the server back and forth, back and forth with no explanation. After all, what college girl is going to want to know about such a puzzling condition. Aren't these things just in someone's mind, anyway? Life can really be complicated, and sometimes my actions don’t reflect the mercies that the Lord has bestowed on me. I’m still growing, and I am asking the Lord for a new season. I don’t want to be the nightmare that sat in booth eleven. I’d really rather be a blessing. Lord, help me bear Your fruit. Have you read With Great Mercy? July 21, 2009 Search me, O God, and know my heart; test me and know my anxious thoughts. Psalm 139:23 OK. Sometimes I am better at resting in God's love than at other times. I'm feeling better now, but last week was tough. By the end of the week, I was totally frustrated. It's not just the pain; it's the medicine. It is also the feeling of hopelessness that threatens to emerge. But it's the hopelessness that people with face pain have to fight; no one can do it for us. A perfect day. Obsessed with a situation. Oh yeah, I had to admit that I am sometimes a Facezilla. Like a bride who wants everyone to understand what she is feeling and what she wants... I have these same feelings. I'm misunderstood. Sometimes I am angry. I hurt so badly. Why can't I just have what I want? Doesn't anybody really want to help me? Be reasonable? Sometimes I don't want to be. If the Bridezilla doesn't like the wedding cake that has been prepared for her, she just puts her fist in the cake and smashes it. Oh yeah, I want to smash something, but I don’t want to clean it up. I don’t want to waste anything. When you are paying for treatment, you can’t afford to have somebody will clean up your own mess. People pity the grooms of the Bridezillas and wish them luck with their demanding brides. Oh yeah. I pity my husband. It took him a few years to catch onto what I am am experiencing and how I feel, and I'll tell you how I feel: sorry for him. These days he stands by, trying to remain calm. After all, if the Facezilla gets upset her pain will escalate. My husband simply allows me to be right. How frustrating this is when I know that I am not. * * * * * Have you read With Great Mercy? July 10, 2009 Your teeth are as white as sheep, recently shorn and freshly washed. Your smile is flawless, each tooth matched with its twin. Song of Solomon 4:2 There are so many days when I absolutely cannot floss. In fact, they are most days. I also have days when I cannot brush my teeth. I struggle with those days. There is something about the mechanism of moving my jaw around to floss that causes terrible pain. So on my good days, I floss. Flossing aggravates the situation and often causes pain, pain, pain. Have I said pain enough? Here's the good news: I've been able to floss twice this week. I am thankful for mouthwash and for toothpastes that help fight bacteria yet cause less stinging. One of those is Biotene. Another is Tom’s natural toothpaste. Have you read With Great Mercy? June 10, 2009 The pain of trigeminal neuralgia and other types of neuropathic pain creates a physical crisis. Our bodies and minds don't know what to do with pain so intense that it seems to separate us from reality while it occurs. Although we are strong and have successfully coped with other challenging situations, violent face pain leaves us with few clues about how we can manage it. Regardless of all the years that we have been in the driver's seat of our own lives, the random pains take the wheel. They drive us to look for relief from the pain, the cause of the pain, and for understanding. Now we are in the back seat of a taxi with a driver who doesn't speak our language and who cannot be trusted. In this journey, we pick up some other passengers: medication and treatment (as well as their possible side-effects); financial strain (treatment costs and loss of wages); employability issues (What? you can't take phone calls?); and the ghosts of friends and family (somehow they seem to fade away). We aren't sure where we are headed, and we are desperate to pick up a passenger who knows the directions. At the very core of our journey is heartbreak. When the people we love don't understand the rapid and dynamic changes that have erupted in our faces and our lives, we feel so alone. Skeptical expressions cross the faces of our co-workers, our employers as well as our clients, students, and our patrons. Our distress and inability to function as before is often attributed to having issues. What people don't understand is that the pain and dysfunction cause the issues. Have you ever been told that you are just making excuses to get out of something you don't want to do? Has someone expected an overnight miracle to take place in your life? Do people think you should have a tooth pulled or have another root canal? They cannot relate to your experience. And lets face it. How could we have imagined this terror if we had not experienced it ourselves.
Some useful passengers to pick up are books. Don't depend on the Internet. Not all the information is reliable. Buy some books about face pain and trigeminal neuralgia. You can take them anywhere, read selected portions again and again. You can share them with others. Another useful passenger is a support group or a telephone support contact. Several organizations have support groups, including but not limited to TNA, the Facial Pain Association. Other groups, such as the American Chronic Pain Association, may have a group nearby. Rest Ministries, a Christian organization, also has support groups for people who have pain. We also have a support group through With Great Mercy. It's for spiritual support and prayer. Although there are many good organizations, there is no substitute for talking with or meeting someone who has experienced facial pain or trigeminal neuralgia. This person is key to helping you reach your desired destination. Along the way, you may want to pick up someone that looks totally boring. It's the American with Disabilities Act. You'll find that he might be boring, but he's powerful. If you work or want to work, you want him in your taxi cab. He'll help you get through some issues on the job. If you need accommodations at the workplace, he knows how to help you attain them. He's on your side, and you can trust him with the driving until you are ready to take the wheel. As the new passengers reassure you, hope emerges. Don't let go of it, even during your toughest moments. Abandon the taxi and climb into your own car. Sit in front, but select drivers from the new passengers. You may want to look for a counselor who specializes in chronic pain issues. Take a look at the supportive people in your family and ask them to ride along with you. Don't worry about the size of your vehicle. The bigger it is, the more fuel efficient it is. Your passengers are providing energy, not taking it. The most challenging passengers to find may be your health care providers. If you aren't satisfied with your first physician, go to another one. Sometimes it takes visiting several before you can find a good fit. It's important to remember that your health care providers are passengers. Don't let them drive or make decisions for you. It's your body. You may also want to consult with your other passengers, those books, support groups, and family members before you decide to have a procedure. It's important to remember that your mind, body, and spirit are connected. Don't forget your spirit. Feed them with faith in God and prayer. Maybe you've heard Carrie Underwood or Danny Gokey sing Jesus Take the Wheel. He's the best driver anyone can have, and He won't charge you a thing for His services. If you would like to join our prayer support group, please email Kathy. Have you read With Great Mercy? June 8, 2009 But as for me, I will sing about your power. Each morning I will sing with joy about your unfailing love. For you have been my refuge, a place of safety when I am in distress. Psalm 59:16 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 are some of my best friends, but not everyone has email or text-messaging. Fax machines are temperamental. Just like fax machines, sometimes we can communicate orally and 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 these issues. 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. Recently I had to make an important decision. I knew I was too ill to think rationally. I tried to explain this, but I was pushed to make the decision. My response was emotional because my pain level was high. Now the decision is made, and I am glad it is behind me. I get emotional when I cannot speak, brush my teeth, open my mouth, or stop the pain. 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... What I really like about prayer is that I can talk to God without saying a word. He understands why I am emotional in times of pain. I am thankful for my faith in God. Have you read With Great Mercy? December 8, 2008
I remember praying to die. I cannot remember how many times I said this prayer, but I remember the physical pain that motivated me to do so. I also remember when I started praying to live. I wanted a life, one that included the freedom to brush my teeth, to speak, to chew, and to feel a breeze on my face. When someone is diagnosed with three cranial neuralgias, his or her world can be a bleak place. I relinquished all my responsibilities. The only thing I had to be concerned about was bearing the pain. I watched my mother turn her attention from her own needs in order to devote her life to caring for me. I heard her and others cry. I heard some people ask God why. Just as it was difficult to believe that I had become so ill, it was difficult to believe that I could get well. Belief was the key. I began to believe that I could get well, and the hope of getting well grew inside me. Hope and faith in Jesus’ ability to heal me became more powerful than the pain. I believe that face pain and other illnesses can be overcome. I am no one special, just someone who believed that I could receive a miracle. You may be reading this because you or someone you know is very ill. Do not give up. Hope exists. Healing happens. Don’t be afraid to believe. Have you read With Great Mercy? November 3, 2008 Then the LORD took hold of me and said, “Get up and go out into the valley, and I will speak to you there.” So I got up and went, and there I saw the glory of the LORD… Ezekiel 3:22-23. After reading my last blog entry, several people have asked me how a valley of tears could become a place of refreshing. It doesn’t make sense if we trust only our senses and our logic. Through our faith in the Lord, though, we learn how a personal valley can become a place to witness God’s glory. Ezekiel – the prophet whom God chose to be watchman for Israel – had no choice but to warn the Israelites about God’s upcoming wrath. No one wants to hear gloom and doom, and this made Ezekiel’s task a painful and dangerous one. Yet he wanted to be obedient, and he was. It was in the midst of this obedience that God led Ezekiel into a valley. The valley represents a place of loss, of weeping, and of mourning. No one wants to be there. Let’s face it: feeling good feels good. Feeling low, sick, bad, unloved, grieved, or feeling pain doesn’t feel good. Our flesh has a disdain for the valley. But sometimes our spirit cries out for it. We’ve heard the adage about being down so low that there is no place to look but up. I think that adage has a lot to do with valleys. Down so low, we’re usually there all alone. That’s when we really long for understanding. No matter who we are or what we need, God understands. In our aloneness, we have the chance to focus on what we can gain from the situation and to ask how we can walk out of the valley and back onto the mountain top. Before we can ascend again, we need to see the beauty of the glory that shines down into the valley. When we’re on the mountaintop, the glory makes it difficult to see anything but ourselves and what is directly around us. But in the valley, the glory becomes so profound. We can see more of God’s creation, and in our solace we can also have a greater experience with Him. When Ezekiel was in the valley, the Lord gave him some instructions. They were not easy to follow, but Ezekiel knew they were from God. He knew because he had just experienced God’s glory. A personal experience with God helps us while we remain in the place of lowness. Having an intimate experience with the Creator fosters spiritual renewal. Our circumstances may not change, but our spirits are revived by the glory. My mother loves a song called “This Valley is for Me.” It’s a beautiful song, and Mom, I dedicate this entry to you. This Valley Is For Me As I look down this mountainside Have you read With Great Mercy? October 20, 2008 I focus on this one thing: Forgetting the past and looking forward to what lies ahead. I press on to reach the end of the race and receive the heavenly prize for which God, through Christ Jesus, is calling us. Philipians 3:13-14 (NLT) Most of us are reminded of the past from time to time. Recently I have been thinking about my past, and how I want my future to be more meaningful than the days that are stored in my memory. Life hasn’t been easy for any of us, so I am hoping you can relate when I say that life has not been easy for me. I love the wisdom I’ve gained along life’s journey, but somehow life has not become any simpler with age. Letting go of my hurtful past has not been easy. I don’t want to return to it, but sometimes I have to deal with the past. I cannot erase it or change it. All I can do is to forgive others, myself, and to remove myself from painful situations I cannot control. I have to remind myself that I am not alone, and that the Lord is with me. As I press on for the future, I know that I cannot carry with me the weight of the past. It took me a long time to forgive. I thought forgiveness would end the sorrow, but it didn’t. If I look at the past, I find that the sorrow is alive. Sorrow can hold a person back, and I want to move forward. I have to let go of the past if I want to finish my race. We can forgive others, but relationships are two-way streets. We aren’t always accepted or loved, no matter how much we forgive or no matter how much we want to be close to someone we love. So I press on to what lies ahead and to be in the place where the Lord is calling me, calling me so that I may receive His prize. Jesus understands what it means to love but to be rejected in return. He pressed on, in spite of the mockery and hatred that followed Him, to the cross. As God’s children, we are expected to look toward the heavenly prize as we participate in life’s race. Our Father will take care of the past and its concerns. God calls us all to find the purpose in the next leg of our race. Help me look ahead, dear Lord. Help me look toward You. Have you read With Great Mercy? October 15, 2008 When they walk through the Valley of Weeping, it will become a place of refreshing springs.
Pain builds up, the dam breaks, and the tears fall onto the ground until they wash out a portion of earth. Then we stand in the valley, waiting, not sure which direction we should go. Even worse, we might not feel as though we can go in any direction. We’re stuck right where we are. Nobody gets out of a valley without walking uphill. It isn't easy, but we have the Lord to hold our hands. He’s not going to yank us out of the valley, though. Maybe we can get motivated to walk out of the valley if we remember the tears that got us there, the tears that helped wash away some of the hurt, the tears that cleansed our broken hearts. We can't undo the tears or the valleys, but we can choose to make that uphill walk. We can choose to hold tightly to the Lord’s hand. Sometimes I have to think about the good things that came from the tears. My tears that hit the ground fed the plants and other beautiful living things. My pain and tears gave life to something else. God isn’t going to let our pain go unnoticed. I'm still climbing upward, and Jesus is holding my hand. Have you read With Great Mercy? October 3, 2008 The fear of man bringeth a snare: but whoso putteth his trust in the LORD shall be safe. Proverbs 29:25 Have you ever met someone that you are afraid of? Maybe it’s not the person but the position. You may have a memory of fear that lingers, a memory of a bully in school or even someone in your family. In my life, I have been afraid of plenty of people. The fear passed long ago, but it is easy to remember. It seems that once we let fear in it grows
very easily. I look around at the circumstances our country currently
faces, and it would be so easy to let the fear in. I will vote in the
election, but my hope and trust is not in the person that I will vote
for. After all, he’s a human, like me. The Lord has promised that we will be safe if we put our trust in Him. How easy is that to do when the dollar has fallen, stocks have plummeted, businesses are failing, and we are involved in a war? It might not be easy, but it is necessary. Sometimes I remember the faith of my childhood. I still place my faith in the same God and His son Jesus, but my faith has changed. I remember singing "He’s got the whole world in His hands, He’s got you and me brother, in His hands…" and I really trusted God. Now trust doesn’t come so easily. Tomorrow seems to be on shaky ground. The Lord has promised that we will be safe if we put our trust in Him. How easy is that to do when the dollar has fallen, stocks have plummeted, businesses are failing, and we are involved in a war? It might not be easy to trust God, but it is necessary. No matter what happens tomorrow, pain or no pain, financial stability or ruin, war or peace, I must find a way to trust the Lord more. It’s not that I just want to be safe, I also want the Lord’s peace. I’ve been deceived by people who never should have had my trust in the first place, but God has never set a trap for me. His love remains constant, and He keeps me safe. He’s got the whole world in His hands. |
If
you live with trigeminal neuralgia or other types of face pain, you
have experienced a hostile environment. Years ago I felt that my
body had become my own prison. By God’s grace, I was released from
the pain. I went back to a “normal life,” and was teaching a Bible
study for the ladies’ group at my church. In the course of the study,
we discussed Psalm 52:8 and another verse about an olive tree, Deuteronomy
24:20. When
thou beatest thine olive tree, thou shalt not go over the boughs
again: it shall be for the stranger, for the fatherless, and for
the widow.
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.
Everyone has times of loneliness; it's part of the human condition. We can be lonely in the midst of a crowd or as part of a family. Social isolation is much more than loneliness. It takes hold of us when venturing outside our homes or allowing someone in our dwelling becomes threatening. Sometimes people with facial pain (such as neuropathic, orofacial, or trigmenal neuralgia) and other disabilities are isolated because an illness prevents them from getting out of the house or from interacting with others. 
experience social isolation. This can be spurred by the environmental barriers that are unique to people with face pain: breezes that cause electrocution-type pains and noise or vibration that causes the pain to strike. Isolation and loneliness can also be caused self-consciousness. Some individuals gain weight with face pain, especially because of some of the medications' side-effects. Others may be unable to brush their teeth or receive dental care on a regular basis. 
So many times I have covered my mouth when someone has entered my home to speak with me. 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.
use the same word over and over again in a paragraph or even in an essay. I like to ignore that rule in my blog. If we want to deal with something, how can we do so if we call it by another name? Why sugarcoat it? It's not just an issue, is it? It's loss. Something we once had is gone. Period. We want it back, but it eludes us.
Let's think about this: day after day without any type of pain in us or around us. That's the kind of life that I would love to have, but let's face it: pain is part of life. All we can do is deal with it the best we can and try to make decisions about tomorrow to the best of our ability. The decisions can seem endless, overwhelming, gut-wrenching. You may get different feedback from everyone you ask for an opinion. People with facial pain need more than opinions: we need wisdom. 
In the midst of pain, I had a close encounter with someone whose attitude resembles mine from time to time. I watched several episodes of Bridezilla and saw a common theme through all the shows: It’s about me. I can relate. Are these women terrible? I don’t know, but I understand being obsessed with a desire to have a perfect day.
This is the time to remember that you know more about your situation than the frenzied taxi driver and the passengers in the cab. It's not time to jump across the seat to grab the wheel. But it is still your life, so you can place demands on the villain that has commandeered your vehicle. You are going to invite some people into the taxi with you, and you may decide to drop some of the ones who are occupying the seat next to you.
“What do you mean, ‘If I can’?” Jesus asked. “Anything is possible if a person believes.” Mark 9:23 (NLT)
Have you ever noticed how much better you can feel after having a few good cries? Sometimes it seems that one cry just isn’t enough. I've been pondering why we sometimes go through a valley of tears instead of a mere puddle. 