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.