Wednesday, December 23, 2009

Thrill of Hope

Nativity

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

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

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

O Holy Night
John Sullivan Dwight

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

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

Friday, October 2, 2009

Doctor's office encounter

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As a rehabilitation counselor, my primary objective is to advocate for people with medical conditions or disabilities. This includes advocating for myself.

I went to a physician this week whom I had not seen before. I wasn't going for face pain or dental treatment, but I was a little nervous. Let's face it; most people who have to go to the doctor a lot are intimidated when they go see a practitioner new for them.

Before the appointment, I had downloaded forms from their website and had completed them. I had given the office staff my insurance information over the phone. We were almost set.

When I opened the door, I was greeted with "I need your insurance card and your driver's license. I take the items from my wallet and hand them to the person who asked for it. She hands me a clipboard.

"Read this and sign it." she says.

"How are you today?" I ask.

"I'm fine," she says. She doesn't ask how I am. Maybe she's seen so many patients she can tell just by looking at us?

"Do you have a pen?" I ask.

"Right there," she says. She points to a pen. I use it. I ask for something on the form - like how much will this cost - to be clarified. Someone else helps me. Before I can sit down, I am called back.

I am helped by a lady who acts as though she's a nurse. She didn't tell me her name, but neither has anyone else there. This is the part of a doctor's exam I hate: all the questions. However the nurse asked them so quickly and put me in a room that I barely had time to think about the answers. How wonderful, no time for anxiety. She was cordial and nice but worked as fast as lightening.

The physician came in and was wonderful. He shook my hand, introduced himself, listened, and gave me some good information. He ordered tests. It's nothing serious, but I knew that before I went. When he opened the door, I saw the staff ready to leave. It was 5:00. I was rushed out as they told me I was their last patient of the day.

No kidding, I thought. I commented on the fact that I was holding them up and got out as quickly as possible. In the car my husband and I commented on the unprofessional behavior of the office staff. They have the "you're just a number to us" routine perfected. Bob told me that while I was with the doctor, the office staff talked about my being the last patient of the month. They wanted to close out the month but they couldn't until I left. Oh well, they'll do it the following day.

Have you ever felt less than human at a physician's office? You know it's not just the money we pay when we are in the doctor's office that makes us a client, a consumer of services. We're not just patients. We're the people who pay the insurance companies to pay the doctor's offices. Can we get better service than at the fast food drive through? Yes, but only if we make it happen.

No one wants to "cause trouble" when seeing the physician. It's important, though, for us to remember that we have valid and important input. When we enter the assembly line, we have every right to remind people that we're human. We count. Each one of us.

Have you been hurried along while visiting your physician? Left with unanswered questions? Please tell me about it.

Saturday, September 26, 2009

Healing and Prayer

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A good friend of mine recently sent me a book that I've enjoyed reading. I don't agree with everything the author says, but that's o.k. Maybe he's right; maybe I'm right. Maybe neither one of us are right. Overall, I think he has some really valid points.

One of the things he mentions is how in some Christian circles it is a disgrace to have an illness. He's right. Some Christians believe in "divine health." This is a phrase that perplexes me. Our bodies are made of flesh. Doesn't this mean that they are going to break down? Wear and tear, accidents, congenital issues, and so many other things cause sickness.

Not everyone believes that God still heals us today, but I do. I have experienced His healing, and I am so thankful for His mercies. I don't know why God has healed me and not some others. Do I think that faith is an element of healing? Yes, but so many people have been told that they are not healed because they lack faith. How discouraging for someone who is already suffering. This tactic is a form of "blaming the victim." I don't consider people with disabilities to be victims, but the mentality of the accuser is the same. We just aren't going to get through life without sorrow, loss, and pain.

Other people believe that "praying harder" does not move the Lord to heal, only that He heals when He chooses. Of course I believe that God is sovereign, but I also believe that He hears our prayers. If we believe James 5:16, that the prayer of a righteous person is powerful and effective, then why wouldn't God hear our prayers for healing?

I offer up my opinion about healing in a world where so many have spoken their opinions on this topic. In fact, most of us are familiar with the tactic of asking people who have an illness to make a donation if they want to have a prayer answered. They want our "seeds" of faith.

Because I am no expert on the topic of healing, I don't want to say too much here. I hope I can reassure those who have been treated like second class Christians because of illness or disability that they have been unjustly accused. I want to encourage you to have faith in Jesus, who healed people because it is His nature. He understands pain.

Don't give up. The Lord hears our prayers.

Friday, September 18, 2009

Trigeminal neuralgia, orofacial pain, and anxiety

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.
anxiety blog


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.

Friday, September 11, 2009

Loss Part 4: Social Isolation

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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 and other disabilities are isolated because an illness prevents them from getting out of the house or from interacting with others.

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 - downright impossible. 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.

Will you share your experience with us? Your success in overcoming social isolation? Your needs? You may comment anonymously.

Wednesday, September 9, 2009

Loss Part 3: Identity

loss identity blog sidelines

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 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.

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.

Thursday, September 3, 2009

Loss Part 2: Initmacy

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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.

Have you visited my website? Click here.

Tuesday, September 1, 2009

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 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.

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're putting ourselves out there to be judged. It's frustrating and causes feelings of guilt and helplessness. We've already experienced these feelings because of the pain. Now here they come again as we try to justify our needs. With the explanation emerges the feelings we try so hard to suppress.

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. It may help others if you post them here on this blog entry, too. God bless you and may you regain what you have lost.

For more information on loss and disability issues, please visit my website: www.withgreatmercy.com

Sunday, August 30, 2009

The Zilla Zone




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. 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.

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).

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.

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% 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.

Saturday, August 8, 2009

Facezilla or no Zilla?




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 arrive at Longhorn, the pain is 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?

I drank about half the cup. I ate my dinner. Without even trying or without losing my cool, I was a Facezilla.

It's so good to stay home!

Tuesday, July 21, 2009

Bridezilla? or Facezilla?




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 tries to set in. But it's the hopelessness that we have to fight; no one can do it for us. In the midst of rest, I had a close encounter with someone whose behavior resembles mine from time to time.

Sunday, my pain was still raging. There wasn't too much to watch on television, so I tuned into Bridezilla and was totally fascinated. I thought about how obsessed these young women were in their quests to have a perfect day.

Bingo. 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?

Who cares what it costs, huh? No not more flowers and bling. I want another method of treatment. Insurance doesn't cover that either? Who is going to make relief happen?

Be reasonable? I don't want to be. If the bridezilla doesn't like what the cake that has been prepared for her, she can just put her fist in the cake and smash it. Somebody will clean up her mess. I don't have the luxury of cake-smashing. Doesn't anyone understand that for once I just need to have a day with no pain? I want a day where I can talk, chew, and be free from medication. Somebody fix it!

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. Sorry for him. He stands by now, trying to remain calm. He knows that if I get upset the pain will escalate. He just allows me to be right. How frustrating when I know that I am not.

I hope I have made this a little humorous, but the reality is that constant pain and disability can cause a person to lose perspective. Weddings aren't going to be perfect. Neither are facezillas. Have you hugged yours today?

Friday, July 10, 2009

Flossing



People with neuropathic facial pain, trigeminal neuralgia, and jaw joint issues such as TMJ know how difficult it can be to floss or to brush one's teeth. When I think of flossing or going to the dentist, I have a lot of anxiety. But when I look at my gums, I have even more.

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. Most of all, I am thankful for God's grace. He sees me through the difficult times and gives me rest when I feel that I cannot tolerate another day of being in this situation. He gives me hope for tomorrow. I remember years ago, experiencing the pain of trigeminal neuralgia: I did not want to see the next day. It was during those desperate days that I realized that Jesus was my best friend. I had been a Christian most of my life, but I had never realized how desperately I needed God.

Most of all, I am thankful for the rest and peace that I have at this point in my life. I'm not afraid. I'm content. I'm resting in God's wonderful love.

Thursday, July 9, 2009

Slob or Klutz? Blame it on the pain...



Do you ever have days when everything you touch just turns into a mess? Or you stumble over things or step on the dogs' tiny toes? I could blame these things on being in my fifties, but it would be unfair. Fifties aren't so bad.

I'll just have to blame the messes I make and the accidental self-injuries on the face pain. Yesterday, after donning one of my favorite Williams-Sonoma aprons, I transferred some oil from one container to another, very carefully using my spatula. I poured too fast, leaving oil standing on the counter and dripping hither and thither. I was thankful that I had on the apron.

Chances are, though, that I have one of my aprons on. I usually put it on when I make my morning smoothie and leave it on until the evening dishes are in the dishwasher and the counters cleaned. Yep, aprons keep me from ruining perfectly good clothes.

Aprons aren't any help, though, when the real klutz in me emerges. Yesterday I stabbed my face with my thumb. Don't ask me how, but it bled and left me with an unsightly gash. I am thanking God that it's the good side of my face. Now I have one side that doesn't hurt but looks as though I have been in a fight. The other side hurts (yes, today) but it looks just fine. (Yes, we women in our fifties can still have nice faces.)

It's not the first time I have accidentally stabbed myself with my nail or stumbled into something, leaving mysterious marks. There's nothing like Bare Minerals -when applied with the right brush - to cover these things so well.

Once upon a time, I thought that everyone's face told a story. This is true in some instances. What I have come to believe these past few years after meeting so many people with trigeminal neuralgia is that our faces actually cover our stories. They are written on our heart, and our faces do their best to prove us brave.

Wednesday, July 1, 2009

Raining mercy


"The quality of mercy is not strain'd, It droppeth as
the gentle rain from heaven Upon the place beneath."

Shakespeare, The Merchant of Venice


Have you ever asked for mercy? So many people with facial pain have. I am one among them. Although I have received an immeasurable gift of mercy, I once again have to contend with pain.

When my pain begins I think about God's mercy and know that it will see me through once again. I also think about the barometric pressure and take a look at the sky. It hasn't deceive me yet. The clouds have formed, tightly interwoven, yet not a drop of rain is in sight. Pressure builds. Sometimes this condition continues for hours. Sometimes Heaven's rain relieves the build-up, but other times the clouds seem to agree to disagree. Then the blue sky begins to emerge, but no rain falls.

It's been a few years since I can remember so much rain. We're blessed with it this year. We've needed it so badly. Yet this year, the pressure is unkind. I have so many days in succession where I just cannot function. My wellness continues to follow the rain patterns. I long for fall, hoping for another measure of mercy.

It's so easy to compare the rain to tears. It's been done so many times that the subject is somewhat trite. Yet I think about sorrow and disappointment and how often they build into an internal pressure that results in tears. It's from my internal experiences that I can understand the effect of barometric pressure and the relief that rain often brings.

I'm learning to be content with my current state. I'm not happy about the pain, but it's a relief to know that on the bad days - even those that lately have stretched into weeks - I have few responsibilities and can first take care of myself. What makes it even better is that so many people who have received my help now offer me theirs. Mercy cannot be defined; it has to be received.

Wednesday, June 24, 2009

The Drawstring



When I was a child, I had a Chatty Kathy doll. I'll never forget when the dolls became available. Not only did this doll have my name, but she also had my hair, my face, and my freckles. Being the loquacious child that I was, it was fun to have a partner who would talk with me. I just had to pull her drawstring, and I did so often.

It wasn't long before Chatty Kathy's drawstring broke from overuse. It wasn't abuse, just my enthusiastic desire to talk with her. I kept the doll long after she was mute. I wish I still had her today because I cherish the memory of her.

Now I would be content just to hold this cherished item for a few seconds. I've learned that it isn't the spoken word that is so important. With my jaw so often dysfunctional, I rely on touch, typed words, and eye contact. They've become more meaningful to me than spoken words. Back in the day, I could talk all I wanted, even if my doll could not. Now I understand her so much better.

Chatty Kathy's value was limited once the drawstring broke, but not so for humans who cannot speak. Having a disability does not mean that we are worth less. Our value holds. Not everyone will see this about you, but it is true. As individuals with disabilities, we must believe in ourselves. We must know that although our abilities have changed, our value has not. It is the core - the melding of heart, spirit, and mind - that forms the essence of an individual. We don't have to allow ourselves to be discarded like a child's broken doll.

One of the best ways to overcome depression that can be secondary to an illness is to network with others who have similar experiences. Not only will you have the opportunity to be supported, but you will find yourself able to support others. Our strings might be broken, but our spirits can be revived.

Thursday, June 18, 2009

Barometric pressure and neuropathic pain



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

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

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

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

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

Friday, June 12, 2009

Families and pain


What do we live for, if not to make the world less difficult for each other? - George Eliot

So much has been written about caregiver support and the stress of caring for someone who has a disability or illness. I am thankful to have a supportive family. My mom will drop everything to help me when the jaw and face pain is so terrible. She did the same thing when I was having pain from trigeminal neuralgia. Life would be so much more difficult without her, my husband, and my daughter.

It is not unusual for us to hear about the toll that an illness takes on a family, but I want to look at this from another angle. Let's think about the stress - stress that triggers more pain - that can arise from family situations. So many of my friends still have children in their teens or away at college. The process of individuation causes stress not only for the child who is anxious to leave childhood behind but also for the parents and siblings.

We hear so often that trigeminal neuralgia is a disorder that normally occurs at or after the age 50. Yet I hear more and more younger people with it, especially mothers with children at home. These mothers are charged with caring for their children, but this tremendous pain is difficult to understand. Consider how difficult it is for most teens to put themselves in their parents shoes. Is it possible for a teen to have empathy for a parent who has a mysterious and totally debilitating pain? I think it is possible. We all want to have our needs met, but what happens when the mother or father's needs have become so great?

Communication is the key to learning how to meet one another's needs. This issue is also at the core of successfully navigating through the individuation process. Growing up isn't easy, but having pain isn't easy either. Parentification occurs when children take on too much responsibility for meeting their parents needs. It can rob childhood.

Loss caused by pain not only affects the individuals who have but also has a great impact on those who love the person who has the disability. Discuss needs that have been created by disability as well as needs that are no longer being met. It can lead to a greater understanding of one another and acceptance of the changes. Solutions arise when people determine to find them, when they advocate for the family member who is ill and when they look for constructive ways to meet their own needs.  

There are no easy answers, but I really believe that love covers a multitude of sins. Speak love, even if it has to be written or put into a text message. Love is what I live for. It is stronger than pain.

How has love helped you through an illness?

Have you visited my website?

The Valley Called Trigeminal Neuralgia


This entry is also from my With Great Mercy blog and website.

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.

Thursday, June 11, 2009

Pain: winning


This entry is also from my With Great Mercy blog and website.



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 can be revived by the glory.

Tuesday, June 9, 2009

Trigeminal Neuralgia, a crisis


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.

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.

Some useful passengers to pick up are books. Don't depend on the Internet. 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. 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 who looks totally boring. It's the American with Disabilities Act. You'll find that he might be boring, but he's powerful. He'll help you get through some issues on the job. If you need accommodations on the job, 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. They'll help you know when you are ready to drive again. And you will be back in the driver's seat. You will.

If you would like to contact me, you'll see my website listed, and you can send me an email from there. I'll be happy to ride along with you on your journey. I've been on one similar to yours.

Now I'm looking for some passengers who know about a unique problem I have with my TMJ area. I have some wonderful passengers in my car, but my journey can be enriched by adding more.

Kathy (Gilbert) Taylor

Friday, June 5, 2009

Emotions and face pain



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.

Unfinished business


Have you ever had to return to a place you once loved? It's happened to most all of us, having a relationship or situation come to a close. We leave part of ourselves behind forever, the intangible investments we made. Today I have to retrieve my tangible items. Things - tangible as well as intangible - can deter us in our paths.

Last week, I had to go to Jacksonville for a medical appointment. The purpose of the visit was to have my MRIs read and the diagnosis made. My husband and I were almost ten miles down the road when I remembered that the MRIs were on my kitchen counter. We had to turn around to retrieve them.

The MRIs represented terrible pain. I had to hold something in my mouth and bite down on it 7 minutes. Well, it was so huge that biting down was my only option. I had just come through 1.5 weeks of muscle spasms that were caused by the exam. The day after the MRI, I felt worse than ever. My jaw locked again, and the discomfort was ferocious.

Today I will have some pain as I turn back around to get some things that I can hold in my hand. I'd love to keep traveling and not look back, but I need the things I left behind.

I think it is going to be alright, though. I had so much pain yesterday from the barometric pressure, but today is much better. So it is time to resume the good fight, to finish this course. I thank God for watching over me.

Wednesday, June 3, 2009

Valley of Refreshing Springs


I posted this entry on my website October 2006, and I would like to share it with you.

When they walk through the Valley of Weeping, it will become a place of refreshing springs, The autumn rains will clothe it with blessings. Psalm 84:6


Have you ever noticed how much better you can feel after having a few good cries? Sometimes it seems that one cry just is not enough. I've been pondering why we sometimes go through a valley of tears instead of traipsing through a mere puddle.

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. I am confident that God does not let our pain go unnoticed. I'm still climbing upward, and Jesus is holding my hand.

Missing my friends


Back in the old days - before blogs, twitter, google, facebook, and email - people could fade into the distance or fall off the face of the earth. We wondered what happened. Closure seemed as impossible as continuing the friendship. The old days had some good points, but modern times have so many advantages. Recently I left a place of employment, and I had "met" so many wonderful people along the way. These individuals either had or loved someone with trigeminal neuralgia, glossopharyngeal neuralgia, or other types of face pain.

I miss these wonderful people.

One of the marvelous things about computers is that we can get so much accomplished without speaking. I'm having a very difficult time speaking these days, but I would still like to voice my care for people with face pain.

Most of us have been to a point where we know we could no longer continue, where we had to step back and take care of ourselves. I am there now, but I miss you.

Claire Patterson, the founder of the Trigeminal Neuralgia Association, says that only the nicest people get face pain. Claire speaks the truth. I will always be grateful to her for raising a banner to fight face pain and to help those who have it.

So this is just one more blog that will let googlers and other Internet users know that they aren't alone. Don't give up. Hold onto hope.