Thursday, August 30, 2007

My Bad Attitude

Just last week I got it again. 'It's all mind over matter. Just put your mind to it, convince yourself you aren't gonna put up with being sick. You can do it if you want it bad enough.'

Um, well excuse me, but no I can't. No matter how bad I want to be well, no matter how hard I try to discipline my mind or put on a positive belief system, my body is still going to be host to an autoimmune disease. And you know what? The same is true of prayer, meditation, yoga and other various types of practices.

Now there's nothing wrong and everything right about positive thinking. It's unquestionably good for us all. And it's high time that physicians realized that we aren't just annoyingly talkative Petri dishes, but human beings with hearts and souls. But when somebody starts expounding on a theory of illness that says the fighters win, the positive live, the upbeat beat it, I get this little twitchy pain between my shoulders that has nothing to do with peripheral neuropathy.

You see, if the upbeat win, if the positive get well, then clearly and obviously, the ones who don't win are those who just didn't try hard enough. You have a chronic disease that keeps you in pain and misery most of the time? Clearly you aren't thinking yourself well. Maybe you want to stay sick.... goodness knows there are so many upsides to being miserably ill. Your sister died of breast cancer? Well, we all know that the ones who beat it are the ones who stayed positive. So obviously your sister must not have wanted to live enough. Maybe she was just one of those negative, give in and go with t he disease kind of people. One friend who suffers trigeminal neuralgia caused by an auto accident has had three brain surgeries trying to find a solution. A mutual acquaintance told her a couple years ago that she was in pain because she wasn't allowing God to heal her. If she would just let go and be healed, the pain would go away. But obviously, she wanted to stay in pain rather than giving up control to God.

When I hear this kind of horse hocky I just want to shriek. Go ahead, blame the victim. It's a fine old sport.

I will talk often and at much length about this subject. I will come back to it like a terrier to a chew bone. It is a pet peeve of mine. People who have no clue what it is like to live with chronic pain, illness or incapacity have no business lecturing those of us who do.

If someone near and dear to you is telling you that you should shape up, believe more, heal yourself through positive thinking, please feel free to send the dear person to this blog. I will finish off today with a message just specially for the hale and hearty who can't stop telling us chronics what we need to do:

Don't lecture me about my faith. It's mine and it's fine. Don't lecture me about my attitude. If you hurt all day and all night, no matter what, you might have a bad attitude too. Don't lecture me about being positive. Because I am absolutely positive about one thing: you are a busy body who needs to keep your opinions and expertise to yourself.

Now that Felt Good!
See you soon.

Tuesday, August 28, 2007

Now Where Was I?

The problem with taking on a blog is that sooner or later it will become necessary to show the world (or at least the half dozen or so folks who have managed to find the blog) why you don't write for a living any more. I'm at a loss for words.

Literally. For the past two days I haven't been able to process language well.

One of the first symptoms to show it's nasty little face when I became aware of my illness was an increasing inability to write. I couldn't keep track of thoughts, ideas, conversations, assignments. And I couldn't think of words.

I was scared at first that I was developing early onset Alzheimers'. The words just would leave me, sometimes with my mouth open. All dressed up and nowhere to go, so to speak. Early on I found a way to gauge my days. If I could do a simple crossword puzzle early in the day, it was going to be a decent day. If I looked at the crossword puzzle page and couldn't make sense of the instructions or the clue words, well, sometimes I just went back to bed.

I have been reduced at times to wringing my hands, gritting my teeth and managing to choke out "the stuff....the red stuff.....the red stuff that's for french fries."

My husband and sons are used to it. They pretty much know what I'm talking about, even when I don't talk. But the rest of the world doesn't quite get it.

Frustration overwhelms me at times.

This is one of those times. I have a lovely blog entry in my head. It's all about ......something or other. But I just don't have whatever it is that makes me able to get words out of my head, push them down my arms and squeeze them through my fingers onto the keyboard.

For the record, it would have been witty, somewhat amusing and a bit informative. Really good stuff.

As it is, all you get tonight is the sad tale of a boring symptom of an autoimmune disease called Sjogren's Syndrome. Or maybe it's Lupus. Or vasculitis. Or fibromyalgia. Or a result of the migraine I had this morning. Or could be high blood pressure. Some people I know would say it's because of the medications I take. Never mind that the brain ooze started long before the first dose of anything. Regardless of which disease snatched my words, they're gone, and I'm muddle brained and thick headed and generally pretty foggy.

So check back tomorrow. The words will return. Always have so far.

And if you are chronic and you are also searching vainly for your lost words, don't worry. They're probably off playing with mine.

Peace be with you.

Sunday, August 26, 2007


Have you ever eaten a fig right off the tree? It's warm and soft and round in your hand, a lovely, fragrant thing, almost too perfect to eat. But just almost, not totally. And when you eat it the flavor becomes the essence of summer sun and buzzing wasps and cool grass under your bare feet.

Life is good, even in the midst of pain and illness. We are given blessings every day.

Some days it is enough to remember that we are all children of God, precious in her sight and beautiful to behold.


Saturday, August 25, 2007

The Fine Art of Pain

Pain sucks.

And you want to know the worst thing about pain? It doesn't show.

For more than four years I have lived with pain. Pain in the skin of my face. Pain in the bones of my face. Pain in my teeth and deep in my ears. Pain in my eyeballs and inside my nose. Pain in my tongue. And it is loud. The autoimmune disease(s) I have can do all kinds of horrible things to the human body: destroy muscle, attack the heart, attack the digestive system or lungs, create kidney or liver damage. In my case, although I have other issues going on, my main symptom is pain.

I take narcotics three times a day. Four times a day I take an anti-seizure medication even though I don't have seizures. That's because anti-seizure medications can relieve nerve pain and what I have is nerve pain, also known as neuropathy. That is just about the hardest type of pain to ease or suppress.

This fact was brought home to me very pointedly early in my illness when I was called by the young resident who had helped examine me at the nearest Big City University Medical Center. She rattled off test results brightly, telling me that I wasn't dying and that I didn't need much in the way of medical care. I kept stopping her. 'What about the pain?' I'd ask. 'What are you going to do about the pain? It's killing me. I can't sleep. I can't eat. I can't stand noise or light or touch.'

My voice may have risen just a bit. I may have sounded just a teensy-weensy bit psycho-killer wild. Because she stopped being bright-medica- student-reading-what-the-rea- doctor-wrote and just sort of shrieked at me through the phone: 'Look, you have nerve pain! There's nothing to do about nerve pain. There's no way to fix what's causing it. Nobody can make it better, and it's going to get worse and worse as long as you live!'

Bedside manner indeed. Good thing she wasn't expecting a tip.

Ok, that was four years ago. I've learned a lot since then. And like I said early on, one of the worst parts of pain is that it doesn't show. Say you feel like some giant, rabid, NFL player-trained pitbull is trapped inside your face and a tiny little kitten is being dangled on the outside. Say you haven't had a shower in two days because water hitting your face/head/upper body feels like the pitbull has invited friends over. Now say you have to go to the grocery store because you are out of caffeine and chocolate and ice cream and other soothing things. So you make sure you aren't naked and you go to the store and you walk down the aisles feeling the pitbull eating your eyeballs and right in front of the yogurt aisle you run into somebody you haven't seen in ages.

She is thin. Her hair is clean. Her clothes match and none of them are on inside out. And she looks at you and blinks and says 'Oh my, I heard you were sick, but you look just wonderful! Look at all that wonderful color in your cheeks! And if you lost any weight you've got it all back now, don't you?' And you make some sort of noise and try desperately to remember why you are standing in front of the yogurt section when ice cream is two aisles over.

Now imagine if pain showed. If you got purple spots or big green circles or maybe little contorted letters on your forehead that would say something like 'PAINNNNNNNNNNNNN'. She would see it and instantly know to turn down the feminine products aisle to avoid you. Both of you would be happier.

But no. Pain doesn't show. Somehow evolution lets us down.

Little children are sometimes born who lack the ability feel pain. They bite their tongues off sometimes once they get teeth because they can't feel themselves doing it. They never learn not to put their little hands on stove burners because they don't feel pain from burns. They may break a leg and continue to walk around on it, because nothing hurts. Many of them die young. Somehow evolution lets them down.

On the whole, the human race needs a little pain. It keeps things in perspective. But when it's chronic it can become a creature with a life of its own. It comes between us and life the way it used to be. It turns us into people we never, ever wanted to be. Friends slip away. The people who love us cry at night when we are supposed to be sleeping because they know how bad we hurt. Hobbies, careers, interests can slip away. Weeks can be lost to a haze of pain.

Like I said, pain sucks. When it rages, we hide. But there are sweet moments even in the middle of a chronic life. When the pain slips into a brief and unexpected sleep, life rushes in again. We race out into the world shouting 'I don't hurt! I don't hurt! Hurry, let's live before it comes back!'

Thursday, August 23, 2007

The Chronic Life Begins

The sun was shining the day the doctor made me officially chronic. I had walked into his office a couple months earlier with a sound self-diagnosis made with the expert assistance of and my sister: Depression. It was a good self-DX and explained the months of increasing fatigue and brain fog that had resulted in the loss of most of my writing contracts and general confusion and anger in my household. After all, when a person's mental faculties go missing for a couple months, people start to wonder why.

So there I was, proclaiming myself depressed and holding out my hand for Prozac or some similar instant relief pill, ready to medicate myself back to normalcy. I left the office with my prescription, but only after leaving a bucket of blood over at the lab.

"Take the pills and rest as much as you can for the next few weeks. Stay in bed most of the time," the good doctor said. Yeah, right.... stay in bed in November. But as it turned out, staying in bed was about all I felt like doing. I took my little pills and I slept. As the month wore on, the depression I was so sure I was e xperiencing lifted, and the fatigue deepened. And a nagging sort of fingernails-on-a-chalkboard feeling had settled into my shoulders and scalp.

"You may need another antidepressant," my sister counselled. "Sometimes it takes months to find the right one for you."

Early in December I walked back into the good doctor's office and informed him that I was no longer depressed, matter of fact my mood was downright jolly. But my body was sicker than ever.

"Well, that's because you have Lupus," he said. He smiled. We laughed a bit. Woo hoo, hehe. Lupus. What a relief! The diagnosis -- which changed slightly in later months -- explained a lot, including the horrible itching in my lower back and arms. Not to worry, he said, take this little pill and this little pill and you'll be fine. I'll send you to the rheumatologist and he'll tell you what you need to do and everything will be fine."

It all seemed so simple. When I told my husband over lunch that I had Lupus, he was relieved. I was relieved. The dark cloud of the past few months lifted. We had a name for the reason I was falling asleep every time I sat down. I had pills to take, a specialist to see. Life would be normal again in just a few weeks.

I won't bore you with the details -- yet (smirk). Just know this: that was December 2002. Today is August 23, 2007 and the only way I can call my life "normal" is because the definition of that word has changed in my household.

So I'm chronic. And if you've read this far you may be chronic too. Maybe we can ride this beast together for a little while. Check back here for more posts. I'll try to write every day or so. But you guys -- you chronic lifers -- know how it is. When you're chronic, all promises and plans come with a disclaimer: "Promises will be kept, plans will be carried out, chronic condition permitting."

See you tomorrow. Life permitting.