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.

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!

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?

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.

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.

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.

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.