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!