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

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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.

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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