Monday, December 17, 2007

Saying Goodbye

Janae Beau White Eagle was an incredible woman. She died just four days short of her 66th birthday. Born on the day Japan attacked Pearl Harbor, Janae slipped out of this life quietly in the hours between one day and the next. No one was there with her. A nurse checked and Janae was there, and when she checked again my friend had gone.

Janae lived long enough to visit with her beautiful daughter and hold her precious grandbaby. Janae loved that baby deeply and dearly, even before he was born. She had time to be initiated into another level of her religion. She lived long enough to welcome death when it came.

Janae was a remarkable woman, self-made in many ways. She was an incredible artist and in recent years had earned her living as a professional quilter. Janae's quilting was incredible. The lucky quilters who have her stitches on top of their quilts own nothing less than a work of art.

At the end, we who loved Janae did our best to surround her with love, even if we couldn't be there all the time. Even though she seemed to be drifting, already halfway out of our world, I know she understood that we were there. I read from her holy book and sang a prayer for her that is important in her faith. We all told her we loved her.

Mostly we held her hand or stroked her hair or just sat beside the window in her room, watching the days grow shorter and darker.

And then she was gone.

Some of us gathered and toasted her memory with hot cider and cookies. Two or three three of us were hard about the work of emptying her house. We fulfilled the wishes of her will as best we could. And still had a house filled with things.

The sorting and boxing and labeling and such began before Janae died. It will be done for good Wednesday when Goodwill comes to take away the remaining boxes and bags. I don't think it will be sad. I have said my goodbyes. It hasn't been easy, spending hours at a time in her house, touching her things, listening for her laughter. But I have talked to her, I have sat in her house and cried until my eyes ached. I think now I can bear to let go of the last of her things.

Janae believed that we are all born over and over until we get it right. And that we share each lifetime with the same people, but in different positions. Maybe next time your husband will be your sister or you will be your aunt's mother. In many conversations, Janae and I came to agree that undoubtedly we had known each other in previous lives. We only shared this life for a year, but it felt like we had been friends forever.

I hope Janae was right. I told her that. During those last days I told her that, with her getting there sooner than me, she has to put the word in with the big Boss. No more of this stuff of finding my friend and then losing her so soon. This has been too hard to bear.

Next time, in the next lifetime that Janae and I get to share, we have to meet sooner.

Thursday, November 22, 2007

Love in a Time of Loss

Right now a woman is lying in a nursing home not far from my home, asleep and unaware.

She is my friend, and she is dying. A few months ago she stopped taking the chemotherapy that was turning her skin into on huge painful blister. It was the fourth round of chemo and was only intended to postpone the inevitable. Four month without more chemo, they said, and that seemed like such a long time. But that was three months ago.

Last week Janae and I planned Thanksgiving dinner. She was bringing yams with pineapple and pecans and marshmallows on top. I told her we'd give her a ride if she didn't want to drive. No problem, she said. It was Wednesday last week, nearly a lifetime ago.

Friday I got a call that she was in the hospital. Saturday morning I opened the door to room 622 on the Oncology Wing expecting to see my Janae sitting up, commanding the nursing staff from her bed. Instead I found her tiny and gray, curled under the blankets, sleeping so deep it seemed she was in another world. When she finally woke, she told me where to find her will. How to call a friend in another city. Who should get her pearl jewelry. She fell back asleep every few words and I had to wake her to finish each sentence.

Is it drugs? I asked the nurse. She shook her head.

You know the head shake. The one that comes with the tight smile and the set facial muscles. You see it all the time on television medical dramas just before the words "I'm afraid the news is bad."

The news is bad. The disease that has eaten her kidneys and swollen her liver so big it has pushed her stomach out of place has found its way into her brain.

Amazing things have a way of happening when life is short. Old friends find their way to the hospital bed. Estranged family members remember the love and fly into town. Good people find time to visit someone they never met for love of a friend. Through it all, flurries of emotion and care-taking erupt and subside all around while Janae sleeps at the eye of the storm.

Everything has been done that can be. All the phone calls have been made. The lost children have been found. We are all watching Janae together now, holding her in our hearts while starting to let go, praying her passing will be easy and peaceful.

Today I will spend Thanksgiving with my husband and sons and a pretty girl named Kait who will find it difficult to make it through dinner without holding my younger son's hand. Janae will not be with us.

Instead she will be three miles away, hard about the business of dying. It isn't easy to watch. Janae's body has more life in it than most. I fear that it won't let go without a hard fight. But in the end, the body will give way. It always does.

Janae's faith instructs that when her soul leaves her body it will be rejoined with the Inner Master and then will find its way into another life, one that will be better for the hard lessons learned while ensouled in Janae. I hope she's right. I hope that her soul's next life will be as part of a large, close, loving family. Maybe my soul's next life can be a next door neighbor.

Sometime tomorrow morning I will drive to the nursing home. I will sit beside the narrow bed by the window in Room 29, holding Janae's hand and telling her stories of Thanksgiving day. I'll bring some bit of stitchery to show her in case she opens her eyes. I'll tell her to hang on a few more hours, long enough for her daughter to arrive with Janae's newborn first grandchild.

I will leave her then to her sleep, to the kindness of Hospice caregivers, to the hard business of cutting the cords that hold her to this life so she can fly to the next.

Sunday, November 11, 2007

Internal Rumors

When I finally felt well enough to wander downstairs to my sewing
room this week, I discovered that while I was sick my sewing machine had
developed a glitch. After two days of trying to resolve the problem I
gave up and toted the thing to the local sewing machine
dealership/repair shop.

The proprietor of the shop is not known for
her people skills. While I explained the problem she stood well inside
my personal space comfort zone, looking straight into my eyes while I
talked. She looked briefly to my machine and when she looked back at me I thought I saw the eyes of my fourth grade teacher Mrs. Humber, who has been the subject
of one or two complete therapy sessions.

'Is your machine threaded now?' she asked, a bit on the shrill
side.Yes, I told her.

'Did you know that the thread isn't in the tension hook?' Still
staring at me, nearly nose to nose.

I told her I knew quite well that the thread was out of the tension hook -- a total lie. But I was channeling my own fourth-grade self and feeling vulnerable.

'Well have you forgotten how to thread your sewing machine?' The question
was so rude and so out of line and her eyes were so unblinking and I
said 'Oh come on' the way people do now.

But I blinked. And she didn't.

In that horrible instant standing there in the gaze of a
woman who owns a small sewing machine dealership in a small town in an
underpopulated state, I was judged and found stupid. We both knew in that instant that maybe, just maybe, I had forgotten how to thread my machine.

I forget a lot of things. It's not the 'now where did I put the keys' sort of thing. My forgetting is a bit more functional. You see, the autoimmune disease that catapulted me into the ranks of the chronic has affected my cognitive abilities. I know this for a fact because in order to qualify for Social Security Disability benefits I had to take a psych test. The man who gave me the test stopped me at one
point when I was desperately trying to remember if the cocker spaniel
dog with the Frisbee in its mouth was sitting with Grandpa earlier or
if it was in the car with Bobby. The doctor patted my hand, handed me
a cup of cold water and suggested I take a break. When I came back
from the break he had put away the testing materials and ushered me to
the door telling me he didn't think I needed to worry, that my
application should go through with no problems.

Now, on one hand, that's what I wanted. On the other hand, I did not
want to be told that I was a card short of a deck. Or maybe two.

Because I have good friends who are chronic, I know that a lot of us face the two-edged sword of being incompetent enough to qualify for disability but being so incompetent that you forget to take your meds. And go to appointments. And to pay bills.

The list goes on, but it becomes more personal and embarrassing.

People who don't know me well enough to know that I have this disease tend to write me off as a bit dotty or maybe even slow. That hurts. If I try to sound intelligent and on top of things, in the same place as everybody else, it just gets worse. I forget words at approximately the same rate as i try to think of them. Pretty disasterous if you're trying for witty repartee.

Learning to live with pain and loss of career and freedom has been hard, but nowhere near as hard as learning to bury my pride and live with the constant little 'slings and arrows' of unspoken insult.

I intend to ask my husband to collect my sewing machine without me. I'm thinking the propriator might be right. Maybe I forgot to push the thread through the tension hook. Or maybe my machine has a real problem. Either way I don't intend to submit myself to the judgmental glare of Mrs. Humber ever again.

And that's one promise to myself I don't think I'll forget.


Wednesday, October 31, 2007

Empty Spaces

I haven't been around in a long spell. Energy has been in short supply and life has been demanding. Next week I'll regale you with stories and even photos of what I've been doing. I meant to do that already, but while I was fiddling my fingers and taking my own sweet time, life jumped up and bonked my chronic head. I have pnuemonia. That's the stuff where you feel like you're drowning only you're standing on dry land. Not fun

So tonight, Halloween, I'm sitting at home in jammies and robe, eagerly awaiting my next breathing treatment. Woo Hoo. Oxygen.

I'm not going to do anything more impressive than writing this blog entry for a few days while I give the high-powered antibiotics time to do their stuff.

Cya next week. Until then, everybody stay well. Wash your hands all the time. Eat green veggies. Sleep as much as you're supposed to. Take your meds.

Cause we who are chronic know that if you do all the things you're supposed to, you won't get sick. Yeah, right. And now I'm going to go watch something vapid on TV and leave you to find your own fairy tales.

Monday, October 15, 2007

This is the Day

Today is Blog Action Day and all us bloggers are writing to encourage environmental action.

Many, maybe most, of us try to live 'greenish' these days. Recycle, share rides, buy green. But I suspect that all our efforts are little more than drops in a very big bucket.

As long as industries spew pollutants into our air, my choice to use pump spray rather an aerosol fabric starch is inconsequential.

As long as farm animals everywhere are being fed loads of antibiotics and growth hormones, shopping at the local farmers market is laudable but hardly meaningful.

We watch little girls (and boys) arrive at puberty at the tender age of 8 or 9 and wonder 'what on earth is causing that?' Universities mount studies. Industry groups mount defenses. The rest of us just get mounted.

I have little faith that we can avert disaster on a planetary scale. (Am I the only person on the planet who actually WATCHED 'Soylent Green'?) But we can try. Success will depend on whether we can grab the attention of corporate interests.

There's only one way to do that: Stop Buying.

No, I'm not kidding. I know you have to eat and your kid needs new sneakers. But think how many purchases you make that you really don't have to. You say Christmas is coming up? I say what better time to whack 'em in the pocketbook than to make a statement that a religious observance of great spiritual depth and solemnity really isn't a great time to fill up our homes with slutty dolls and violent games.

Let's set a starting date and a length of time. If we can make it across the holidays, all the better. And for that period of time, let's see how little we can buy. Eat basics. Wear what you wore last week. Do you really need another DVD? What about the library? I hear that is a big building just filled with books and DVDs and CDs and they let people use those things for free. Try walking to work. Or ride a bus. Your kids drive to school? Park the car for a week or two. They can use the exercise of walking to school.

You see, I really do believe that corporate interests are running our world. I would say for better or for worse, but I can't think of any possible 'better'. We can't vote them out of office. They don't care if we protest in the streets. Honestly, they don't care about anything, the climate included. Global warming? Woo Hoo -- air conditioners will sell like hotcakes!!

What business cares about is money. My money. Your money. If they don't get it, they starve. For one short period of time, let's try starving the beast into awareness. And when we start feeding it again, make sure we get the message across that we want better care taken of our dear Earth.

Who knows -- maybe they'll sit up and pay attention. It's worth a try.

In the meantime, hug a tree, feed a bird, water a flower, give your neighbor a ride. Maybe it'll become a habit.

Peace and Blessings on the Matriarch of us all -- Mother Earth

Saturday, October 13, 2007


When I first realized I had a disease that could destroy my life, and then kill me, I was afraid.

Sleepless nights were spent fretting about what direction my illness would take and whether I would live to be .... whatever. I come from a long line of people who live to be very, very old. I intended to continue that trend for another generation.

After endless doctor visits, tests and consultations the worries waned. My disease became familiar. My condition stabilized mostly. A year went by and then another and although I was in pain all the time, none of my organs were being compromised. Fear slid into a separate compartment of my psyche, more of a dull ache I had to look for than a sharp jab that demanded immediate attention.

The one medical test I never had was an MRI. My insurance doesn't cover it until I've met the annual deductible of approximately $1 million. OK, that's an exaggeration. But the deductible is high enough that I haven't met it in either of the last two years, even with my frequent medical visits.

As a result, nobody has any idea what is going on in my brain. No pun intended. The episodes of vertigo are put off to inner ear inflammation. Cycles of lousy balance -- the same. Or maybe I'm metabolizing meds differently for a while.

But always, in the back of my mind, has been the niggling fear that my growing list of nervous system complaints might be caused by something even worse than what I know I have.

I have a good friend who was told she had lupus and Sjogren's Syndrome years ago and opted never to take treatment. Although she was horribly sick for a period, through the years her worst symptoms eased a bit.

Then a couple months ago her symptoms worsened. She and I shared numb and tingling hands and feet, dizzy spells and weird balance. The symptoms that are eased by my medications went untreated in my friend. She just shrugged it all off.

Until the day she fell down the stairs. Headfirst. Backwards. Reluctantly she started the cycle of testing again. One doctor visit led to another. Last week she got the news: her physician suspects Muscular Sclerosis. An MRI is scheduled to find out for sure. My friend was shaken by the news; her husband is afraid. MS is a nasty disease, one that strikes fear in almost any one's heart.

After all, who in our generation could forget those terrifying television public service ads from the 60s and 70s? Some personality would describe horrid symptoms and then as the screen faded to gray, a solemn voice would intone 'MS, the great crippler of young adults.'

My friend told me she may have MS on the same day my husband brought a newspaper article to me and told me I needed to read it.

'These are your symptoms,' he said. I explained that there is no way to find out whether or not my symptoms are MS without an MRI, and that we just can't afford to pay out of pocket for such a high-end medical test. Those kinds of diagnostics are priced exorbitantly because insurance companies will pay the fees. As a result, people like me who don't have insurance coverage are up a creek with no brain scan.

I know I'm lucky to have the insurance coverage I do. Millions of Americans have no coverage. But I still burn with anger when I think what it will take to manage an MRI, paying in cash. There will be the test, the technician who performs the test, the physician who reads the test and the neurologist who tells me the result. The cost will be in the thousands of dollars. If I have the test.

The good Dr. B says it's not necessary. I'm 90 percent sure he's right. It's that other 10 percent that haunts my mind in the night, and sometimes even in the day. I'm trying not to let it push me around.

Somewhere down the road I think I will have to find out for sure. Because knowing, even the worst, is better than the fear of what might be.

Peace be with you, and may you always be free of fear.

Wednesday, October 10, 2007

Sweetness and Light

Life is sweet right now

My husband has taken time off work and we are spending days together in that way people do when they've been together a long time. Sometimes we can't get enough closeness and the next bit we find that we're tripping over one another. It's good. That kind of time creates small moments that are wonderful. He finished the gate today while I poop-scooped the yard. We were together and it felt right.

Yesterday we drove all over, looking for places where he can finish hikes into the mountains without climbing through someone's backyard. One day we bought fruit. Another day we went to Leavenworth and bought me a hat.

Life's minutiae is sweet. During these times, pain just is. We both know the pain sits on my shoulder, but we agree unspokenly to ignore the beast. All daily activities are planned around my afternoon nap, which is sacrosanct.

Maybe it's the lingering light of fall days, or the surprise of looking up to see that a single branch of the poplar tree went golden over night. Whatever the reason, these days glow. Asters are blooming in all shades of pinks and purples, the flame bush is in its glory now.

I wonder sometimes if that pathetic little bush that clings to life through spring and summer, finally managing to cover itself with leaves at the end of the season, knows that only the fall display of scarlet leaves saves it from the compost heap?

So I hurt. It's there under everything, on top of everything. But not so horribly today that I feel the need to whimper and rage. The concession is that life is quiet. There will be no late-night drive over the mountains for a movie in Seattle, no staying out in the cold watching the fall sky turning to winter.

Instead, I'm about to go upstairs and make tea for two people. I think we will drink our tea while walking through the garden, one more time, spotting a place that needs more bulbs and a plant that needs dividing and the surprising turn to scarlet of a cranes bill geranium leaf.

Then I'll sleep and maybe dream about the autumnal turning. And breathe in this sweet time while it stays.

Peace and Blessings

Wednesday, October 3, 2007

Sun Worship

Every summer for years I dreaded vacation.

It always started innocently enough. We would pack up the car, strap in the boys and head for someplace cooler than the pits of Phoenix. On arrival we would check into the motel or set up the tent and play for the rest of the day. Evening would come and supper and bedtime for two exhausted, hyped up little boys.

And I would get sick.

Like clockwork it happened, summer after summer. By bedtime on the first day my husband would find himself with two cranky kids and a wife sporting a fever, headache, body pains and maybe even vomiting.

As you can imagine, my little vacation ritual created more than a small amount of stress.

It wasn't until I was labeled chronic that I realized what was happening to me: I have major photo sensitivity. It can happen to anybody. Chemo patients are likely to be photosensitive. Likewise people taking certain medications. I, and a lot of others, are photo sensitive because our immune systems have gone berserk.

This link will take you to a site that explains the skin reaction to the sun that many people suffer. Rashes, itching, peeling skin. It sucks. But some of us don't just have skin reactions. For some of us, exposure to UV rays can trigger an all out immune system response. When our immune systems find no invaders to attack, they become like hyper, sugared-up preschoolers at a birthday party and attack their hosts. In this case, 'hosts' translates as 'organs'.

I was already chronic back then, I just didn't know it. Hindsight is 20-20 and looking back I can see a pattern of physical conditions that some medical person probably should have looked at all together and realized that I was a very sick woman.

Instead, my medical providers usually told me I needed to lower the stress level in my life, perhaps with meditation or yoga.

Yes, that might have been helpful. But a correct diagnosis would have been even better.

As it happened, the good Dr. B was the first medical provider to connect what happened to my skin out in the sun with my physical misery.

Since my early twenties I have known that being outdoors without sunscreen would result in a face full of ugly, painful 'zits.' OK, call me slow on the uptake, but I never connected the face stuff with the fever, hurting, throwing up stuff.

Then a few months after my original diagnosis I found myself in Dr. B's exam room complaining of a nasty flare of symptoms. While poking and prodding, the good doctor pointed at one of the eruptions on my face and said 'What's that?'

'Um, a zit'

'And why do you have it on your face?'

'Because I was out gardening and forgot to put on sunscreen. It always happens.'

'You mean it always happens when you go out in the sun?'

At this point I was beginning to feel very, very stupid. Sure enough, Dr. B confirmed my lack of connectivity with typical terseness:

'That's not a zit. It's a sore. You're photo sensitive'

Oh goody. Another label.

Dr. B. then went on to explain that the condition of my face just might match the condition of my internal bits and pieces and that was probably why I was sitting in his office waiting for a depo-medrol shot and whining about how bad I hurt.

I got the shot and short term relief. I also got a long term medical order to stay out of the sun. Or more accurately, out of UV rays. If I have to be in an exposed place, then I have to wear sunscreen, a hat, long sleeves and long pants. If those clothes could provide UV protection, so much the better.

These days I don't go out in the lovely, sunshiny part of the day. Walks down by the river are of necessity short. Even dressed right I fatigue quickly when I'm out in the sun.

Or at Costco. Or Home Depot. Or any other big box store with high voltage florescent lights.

You see, those lights save energy and provide great visibility. But they also put out UV in big amounts. That's why when you see me at Costco in December I'm wearing a hat. Or when I'm in Target in July I have on long sleeves and long pants and that damned ugly hat I have to wear all the time. My husband has jokingly suggested a burkha. Sigh.

There is no cure for photo sensitivity, just like with most chronic conditions.

I'm not sure what was worse, really, enduring the misery of feeling so sick on summer vacations or just not having summer vacations any more. We don't go to the beach now. Or camping. My husband and I were serious birdwatchers. But birds mostly get out and about in the sun and that's no good for me.

We don't ride our bikes down on the river loop anymore and long walks, even if I feel up to it, are out of the question. My garden, which I cherish with all my heart, has become my husband's gift to me. He now is the one who plants and tends. He makes the garden thrive and hum with life. And he calls it mine.

On fine summer days he'll call me to the door, pushing that ugly hat firmly on my head, making me put on the long sleeved jacket and then pulling me out to the garden to spend a few precious moments. We admire the new blooms, cluck over the clematis that just never has done well, marvel at the abundance of life.

So it is that one summer ritual has replaced another. The old one was hell. The new one is fleeting and sweet. Just like the burst of sweetness from a honeysuckle bloom. Just like the warmth of the sun that beats steady on my back, just for a moment. Life is good.

I have to smile then, because I realize that along with all the other labels in my life, I am chronically blessed.

Peace be with you.

Wednesday, September 26, 2007

Where Are the Fog Lights?

For three hours I've been trying to pull my brain together and write about something important. It's not going to happen.

Maybe this is the time to explain brain fog. That's what we call it. If you're chronic you know what I'm talking about. If you're not, well, it's sort of like trying to sing underwater, only it has to do with thinking.

I don't know the physiological reason for brain fog. I know a lot of us have it. People with autoimmune diseases, chemo patients..... chronics.

In a past blog entry I explained how it is when I lose words. When full scale brain fog hits, all intellectual pursuits float in a viscous goo, just out of reach. Not only do I lose words, I lose the part of me that remembers why I wanted the words in the first place. It's an ironic state for me when I have spent my life writing for fun and profit. The only door I've ever known has slammed shut.

People who know that I'm sick but don't quite get it often ask why I don't freelance for magazines or newspapers. Obviously, the people who ask that haven't done it and don't know how much work freelance writing requires. Such effort and work is quite beyond me these days. Even if I could find the words and make the deadline and deliver something vaguely like what was assigned, there would be an even bigger problem.

Brain fog makes me unreliable. Sometimes things that I am absolutely certain I have done have absolutely not been done. Sometimes it's the other way around. And I confuse .... well, everything.

Nobody but my husband knows the depth of my confusion. And even he can't see it all.

Tonight all my traction is gone. I have words, but they won't fit together the right way. The story that needs telling will have to wait for another day. Tonight I will leave the keyboard and go play with my fabric.

Thank God there are so many windows.


Sunday, September 23, 2007

Doctors and Other Problems

I want my life back. I want to be like I was before. I want to be cured.

That's what all chronics want. We never can quite give up the hope that somewhere out there is somebody with a cure. Because cures in our culture tend to come from doctors, we spend too much time and money looking for the right one.

I've done that. A lot. It didn't work.

These days I stick with my internist. He's the one who first diagnosed me with lupus. Dr. B has a lousy bedside manner, dismisses almost all my concerns as the products of an overly anxious imagination and at times treats me like an idiot child. On the upside, he has worked with me to find pain medication that will let me live, and he has told me he will increase my narcotic dose if I need.

He's clearly a superior physician.

Most people with autoimmune diseases are treated by rheumatologists. There is only one in my little town. When Dr. B gave me the referral to see the rheumatologist, who I will refer to as Dr. Rheumy, he did so with some trepidation.

"He's going to tell you that you don't have lupus," Dr. B said. So why was he sending me to this doctor who would undo the diagnosis he and I had so happily agreed upon? Well, that's how it's done.

So off I went to the good Dr. Rheumy, who indeed told me I didn't have lupus and wasn't really ill. He didn't believe the positive result of a test for Sjogren's Syndrome and had it redone twice. When it continued to come back positive, he informed me that it was really a mild disease and that I wasn't really sick and didn't really hurt.

OK that didn't work, but the good Dr. B started me on appropriate treatment for autoimmune disease and for discomfort. As the discomfort turned more and more into howling nasty pain, I looked for another doctor. Somebody with more answers. Somebody with a cure.

Let's just say I kissed a lot of frogs but all I got out of it was a good set of warts and about $4,000 in medical bills that my insurance company didn't think it should have to help pay.

Probably the lowest I sank was when I went to a highly recommended doctor who never looked at my medical history, tossed the questionnaire I had filled out and ignored all my questions. I was, he announced, suffering 'Female Pain Syndrome'. This was caused by childhood sexual abuse and ongoing abuse by my husband. Oh yeah, and by me being female.

I told him I had not been sexually abused as as child. He shook his head and talked briefly about denial and then started badgering me about my husband: 'Does he hit you?? Is he verbally and emotionally abusive???/

This time he didn't even pause to let me say that my husband is the kindest, gentlest man in the world and wouldn't abuse me or anybody else. Instead, he launched into the treatment: no pain medication of any kind. Instead, I would go to psychological counseling twice a week and take big doses of antidepressants to deal with the constant pain. I would learn to endure the pain and go on with my life despite it.

Because my clothes were in another room and I was wearing a facial tissue I had to wait for the madman with the stethoscope to leave before I could escape to my car.
I've run into other women who have had the same treatment from him. Yikes. Do you think anybody goes along with his crazy treatment plan?

There have been other doctors. You'll probably hear snippets of those visits. But for now I'm sticking with Dr. B. He may be insulting and rude, but he also writes my monthly prescription for morphine. He helped me when I was trying to qualify for Social Security Disability. And he's almost always available within the day or two after I call for a visit.

Maybe the most important thing Dr. B does is that he tells me I'm not going to be cured. He reminds me that my illness is progressive and that it is progressing. He tells me that nerve pain is hard to treat and that the options are limited. He keeps me anchored to hard reality.

While I don't like having my hopes popped like so many pretty balloons, I know that chasing cures won't do me any good. Hope is vital. Reality can't be ignored. When medical science comes up with a cure, Dr. B will write me a prescription.

Besides, I figure every visit with Dr. B from now on will give me at least one good blog entry. You just can't ask for more than that from a doctor.


Thursday, September 20, 2007

Poetry Time

Tonight I am exhausted.

I spent time last night and today helping my friend J dismantle her household. She is moving to a more comfortable place, and in the process is selling everything but the necessary nuts and bolts of her life.

We measured fabric and rolled and marked it: $3 a yard. She is only keeping the things needed to complete a few projects. J sat down and figured what she can hope to finish in the few months left to her life. Everything else goes, generating cash she desperately needs to continue living until she dies.

I'm tired to the bone. Aching in body and heart. We laughed all afternoon. That's her gift to me. She says it's my gift to her. We are both blessed.

So the post I had planned for today will wait for another day. Instead, I'm going to treat you to a small portion of a poem by Dylan Thomas. He is my favorite poet, and I love poetry.

This excerpt comes from "Poem on His Birthday", written in the summer of 1951. The poet was 35 that year. He died on November 9, 1953. I believe this piece of poetry is quite possibly perfect:

Yet, though I cry with tumbledown tongue,
Count my blessings aloud:

Four elements and five
Senses, and man a spirit in love
Tangling through this spun slime
To his nimbus bell coll kingdom come
And the lost, moonshine domes,
And the sea that hides his secret selves
Deep in its black, base bones,
Lulling of spheres in the seashell flesh,
And this last blessing most,

That the closer I move
To death, one man through his sundered hulks,
The louder the sun blooms
And the tusked, ramshackling sea exults;
And every wave of the way
And gale I tackle, the whole world then,
With more triumphant faith
That ever was since the world was said,
Spins its morning of praise;

Dylan Thomas understood that his life would not be long. At the young age of 35, he could see the end coming. Spending time with J makes the fragility of life and the certainty of death more vivid. The journey will be over. The story will end.

I hope for you, dear friends, that when your own story winds down and your journey is all but over, you will find, as the poet did, the sun blooming louder and the world filled with "triumphant faith."

May the Peace of God go With you.

Tuesday, September 18, 2007

Stitches in Time

Quilting came to me after I was diagnosed chronic, when I was at my lowest. It was a gift from my grandmothers.

I had lost my words and become fat and my hair was falling out in clumps. I had gone to a gray building filled with gray people and told them that I was not competent to ever work for money again. They believed me.

Until you have spent weeks gathering reams of evidence to prove that you are utterly useless to the world, you cannot understand how horribly and completely that hurts.

My mother had given me a nifty sewing machine a year or two earlier and I had taken a quilting class with a friend. For a year or more, the only quilting activity I worked on was collecting fabric. Then one chronic day when I was lower than low, the fabric called to me. I spread out my fabric, rejoiced in the beauty of it, and started cutting it into little pieces.

Quilting became my life raft. On days when I was drowning, when pain ruled, I could still fondle my lovely fabric and look at the books filled with photos of stunning quilts and dream of a better day.

As I said, quilting is a gift from my grandmothers. Meemaw was born in 1891 in Indian Territory Oklahoma. Granny was born in 1886 in Arkansas. Life was hard back then. Little girls learned to stitch as soon as they could hold a needle.

By the time I came along, life had gotten easier by far, but both still made their own clothes and clothes for my sisters and myself and quilts to keep us warm.

They let me go through button jar and play with rickrack and stack up the little scraps of fabric. Granny even let me pump the treadle to her old sewing machine while she stitched long, straight seams. They gave me quilts to wrap in, to be warm against long, cold Texas nights.

They taught me to love fabric, the look and feel of the stuff and the myriad ways it can go together. I forgot that lesson for many years. But when I was in need, it all came back.

Quilting saved me. It has become my passion. I am slow and not terribly good, but I love the way you can make something perfect and orderly. I also love how you can make something wild and free.

Thank you Meemaw. Thank you Granny. Once again you have wrapped me in quilts, warm and safe against the long, cold night.


Saturday, September 15, 2007

What Time is It?

I never have enough time.

As a result, I almost never finish anything.

I took up quilting a couple years ago because 'being chronic' seemed like a lousy hobby. I took up quilting because it gave me the perfect cover for my true love, which is buying fabric. My vision of heaven has nothing to do with streets of gold and everything to do with row upon row of gorgeous bolts of fabric -- all available for free, of course.

I'm great at buying fabric. My quilting, however, leaves a bit to be desired. I struggle to make points match. My squares are wonky and my seams sometimes look like the trajectory of a car drven by a drunk celebrity. And I'm slow. Once a month I go to quilty meetings where lots of women and one man get together to show off our work. Each month, the same women stand up and show their work, all so perfect, all so finished. Each month I go home and look at my projects, lined up along the shelves like neglected urchins. I stand there in my sewing room wanting to take up the scissors and thread and wale away until i have finished a quilt or wall hanging and reached the enchanted land of embellilshments. But usually I just go to bed.

That, dear reader, is why I have so little to show in the way of finished work: I sleep a lot. Fatigue is my constant adversary. My kind of chronic has no reserves. If I do too much and get too tired, bad things happen. You don't want to know the details, trust me. So I try to get plenty of sleep.

I have to sleep 9 hours at night, and tend more toward 10. And I take a nap every afternoon. Always an hour, sometimes two and if I've pushed a bit in the morning, I might be out for three. And, if I was foolish yesterday and spent time in the sun, walked around town with a visiting friend, drove too much, etc ... then today I'm going to pay. I will wake up late, be exhausted by the effort of eating breakfast and need a morning nap. I will wake up shortly before noon, be exhausted by the effort of eating lunch and go back to sleep. Before dinner I'll wake up long enough to load the dishwasher and figure out something for supper that requires absolutely no energy and then I sleep until my husband comes home from work. After supper, of course, I'm ready for an early bedtime.

You can see how that would make it hard to get much done.

My dear friend J recently stopped being chronic. She went to her doctor one day, expecting a change in chemotherapy, and came home with a referral to Hospice. Christmas may not come this year.

They say that those who are about to die find they are living much more vividly. They take chances and do things they've always put off.

Well, J isn't jumping out of airplanes or climbing mountains. Instead, she's selling her personal possessions so she will have enough money to eat when she can't work anymore. Yeah, it sucks the big one. Life is so unfair.

In addition to being my friend, J is a quilter. She actually has made a living quilting the quilts that other people put together. When I talked to her yesterday, she was trying to figure what she can do in the time she has left. Some projects she just has to finish: a velvet quilt for a friend who took her in at a tough time, a wall quilt for her daughter, a stuffed teddy bear and matching bunny rabbit for a grandchild she may never see. The rest of her 'stash' of fabric will be sold to quilters who are gambling they have enough time to use it.

They say people who know they are dying have more wisdom and insight into life's hard questions. So I complained to J about my lack of time, how I sleep too much and just don't have time to finish all the projects I have started. I asked her what to do, how to manage, what is the answer to my frustration? My friend shook her head, took a quick look at the stacks of fabric she will be selling in the coming weeks and gave me the full force of all her insight and wisdom.

'Work faster,' she said.


I realized today that at the end of my last post, instead of signing off 'Peace and Blessings' I had written 'Peach and Blessings.' It may have been a simple typo, or may have been some sort of associative slip caused by the sweet, juicy, bursting with flavor peach I was eating while I wrote. Either way, I sort of like the whole idea. After all, what could be more of a blessing than a perfect piece of summer fruit? On that note, I will leave you until next time with this benediction:

Peaches and Blessings and All Good Things!

Wednesday, September 12, 2007

The Road Less Travelled

It's remarkable how many opportunities we have during a lifetime to lose friends.

Really, if you consider, they are all crossroads. Maybe you went to one high school and your friend to another. Or you went off to college in another state while your high school friends stayed home. Regardless of all the promises to be "Best Friends Forever", you lost touch quickly and it was all for the better. You entered the world of work and bonded quickly with the people you found there. But on the day you got married and your best Buds stayed single, something happened. You tried to stay friends, but somehow it got harder and harder to get together and you became closer and closer to other married people. When the first baby came along you crossed another road. Good friends suddenly looked at you as if they were seeing a maniac. And all just because you couldn't stop gushing about poop and spit-up and breast milk accidents. Your friends were other parents from then on.

Then came the day you got sick. You probably were sick for a long time before anybody, yourself included, noticed. We tend to operate like that. But once it was undeniable, once you had a label, it all happened so fast.....

At first, there was an outpouring of love and caring. Friends sent flowers. Acquaintances brought over pots of soup and casseroles. "Let me know if you need anything," they said. And they meant it. But you kept on cancelling get togethers. You became the constant no-show. And when you did make it, there were all those other problems:

You couldn't stand the sunlight, couldn't eat that food anymore, couldn't walk so long or stay up late. And more mind-boggling, maybe you just didn't have money any more. Two incomes had become one income and one constant source of medical bills. You were no longer able to drop into Starbucks for a $4 cup of coffee every day. Even if you felt like it.

Friends had come and gone before, but this one hurt. You really did need them.

Some of you even watched your spouse walk away.

If you were lucky, there was one good friend who stuck it out. The loneliness felt like another symptom, one that meds couldn't fix.

How do you make friends when you can't even get out of bed some days? How can you feel attractive and interesting when you hair is coming out in clumps and all you can talk about is the latest med and its affect on your body. Where are those people who will fold you into their arms and close ranks around you, loving and giving you encouragement and care?

Well, many of them are online, in special communities devoted to the particular illness or condition they share with you. I got lucky. When I needed friends the most, I found compassion, understanding and friendship online in an online Lupus support group.

Some of your friends-in-waiting are in support groups in your community. Check newspaper listings, ask your physician, call the nearest hospital. They can put you in touch. There may even be mentors for your condition, people who have been where you are and can help you through it.

When you become chronic, your life will change. It is, after all, another crossroads. You are taking the road less travelled, not by choice but by chance. But if you can look around you and reach out, just a bit even, then you will find that others are also traveling that same road. They will see you as you are now rather than as you were. They will learn to love you right now, in this moment.

Don't be afraid. Reach out, even if it's just by phone or computer. We need friends and companions on the road with us. They make the journey worthwhile.

The sites where I found friendship and compassion were a Lupus organization
and a Sjogren's Syndrome site.

Peach and blessings,

I have included two links in this post for supportive online communities. If you know of others, please send them and I will include them in future posts.

Wednesday, September 5, 2007

Saying Goodbye

Saying goodbye is never easy.

Today my faithful, feisty, trash-raiding, cover-hogging, bagel-stealing little dog said goodbye. In the end it was the only kindness I could do for my little friend. And after 15 years together, he had more than earned the kindness of a gentle exit.

Angus was three-days old the first time I saw him. The breeder held cupped hands against her bosom, three little lives cradled together there. I picked him up first. He was perfect. I had to look at the other two, just for good measure. But from the first time I saw him he was mine.

'I call him One-spot,' the breeder said. All the pups were white with black splashes, but only Angus had one perfect round spot just above his snipped off little tail.

Seven weeks later, he cried all the way home. My sister, Fritz, rode shotgun on the long ride out to Laveen. We wrapped the pup in one of my old T-shirts and snuggled him into a small box, expecting him to sleep. Wrong. Shrieks of outrage filled the little car. Howls of misery followed one after the other. My poor sister handled the screaming pup with remarkable grace. But after all, what could she do?

The first night he shrieked all night long. The second night, after the household fell asleep with pillows over their ears, I crept into the kitchen and took the little thing out of the kennel. It was cold. I took him into the bedroom and snuggled him on a blanket at the foot of the bed and we both fell blessedly asleep.

Morning came early and quietly. I checked the bed. No pup. I looked on the floor. No pup. I panicked (one of my favorite activities). Just then my husband stirred and said in a half-terrified, half-asleep voice 'I think there's a dog down by my foot.'

I could just imagine the little guy, dead, suffocated under the heavy blankets. I threw back the covers and grabbed his tiny body to check for signs of life. He opened one eye, snapped at my fingers and dove back under the cover.

And that was where he slept many, many nights. If he wasn't in my bed, he was on a pillow close by, covered with a blanket. So it was that my sons grew up and so did Angus. He was always there, underfoot and begging. Sleeping on somebody's coat or raiding the garbage.

One day I looked up and he had grown old. The number of sleeping boxes and pillows grew. Soon there was one not just in each room, but in each part of each room. And blankets were everywhere. One day we found him on the sofa and somehow didn't chase him off, just brought another blanket to him.

Old age isn't kind to any creature. If there is any mercy for the little ones it's that they don't know what lies ahead. One day may be bad, but they never expect the next to be bad, too. Each moment simply follows the last and time moves on until one day, time has to stop.

I brought home his collar and tags. Sometime soon, when we can do it without bawling more than a little, we will have a family moment for Angus. We will tell all the Angus stories that were too long to include here. Because my sons and husband are male, inevitably we will start telling stories of Angus's legendary digestive system. We will laugh. Before we know it, the sad tears will be mingled with laughing tears. Memories of Angus will begin to bring a soft smile and sweet gladness rather than with the sharp pang of fresh grief.

That's how we go on, after saying goodbye.

Monday, September 3, 2007

Living Medicated

Don't you just love meds?

Those little (and sometimes big) pills, patches, cocktails and injections that get us through this chronic life take up a lot of space both in the medicine cabinet and in the shaky and undependable hard drive known as human memory.

I know. At one time, I had 13 prescriptions. (I'm down to 6 now.) I took at least one tablet from each Rx every day. Most of them I took several times. And they were not all on the same schedule. Some I took as needed.

Take this twice a day after eating
Take one pill three times a day for pain
Take one pill four times a day
Take one pill after the evening meal
Take one pill several hours before going to bed
Take one pill each week, at least 30 minutes before eating or drinking anything else
Take one pill twice a day at times when drowsiness can be tolerated
Inhale one dose in case of migraine
Use one if vomiting does not stop after a reasonable time
Take one or two pills every four to six hours for breakthrough pain, no more often than once a day (huh????)
Take one or two a day, or one every other day, depending on doctor's directions

It was enough to make my head explode. And remember, one of my symptoms is what we chronics politely refer to as "brain fog."

I tried lists, charts, little pill boxes, big pill boxes. I tried putting the pills in some reasonable order on the shelf. Now that was a laugh. I've never managed to maintain anything in a "reasonable order" in my life. I can't imagine why I thought I'd be more successful with little white and brown bottles of pills.

Mornings were particularly miserable. Some of my meds were only to be taken on an empty stomach. Others had to be taken with food. Both kinds said "take first thing in the morning." Add to that the facts that: A) I've never been a morning person, and B)all my pain meds have worn off during the night. Woo Boy. I am one finely tuned, high functioning piece of precision machinery in the morning.

Oh yeah, and my hands shake sometimes. Heh. Yeah, you should have been there watching me (sans glasses because I never, ever remember where I took the blasted things off the night before) squint at bottles, pick up and put down, open and close, shake out one and then put it back, fling another one right across the bathroom, pick up the spilled pills and finally do the only smart thing to do. Call my husband.

'Did I take my ______ already today?' I'd ask. He didn't usually know, but because I married a man who creates organizing systems in his sleep, he could usually talk me through the process and help me bring order to chaos. For a little while.

Of course the whole thing is set up for disaster. There have been times when I've skipped a dose. There have been times when I've doubled a dose.

I can't tell you how many times in the past four years I've stood in front of the mirror in the bathroom, looking at the little pill in my palm and muttering 'I think I didn't already take this. But I sort of remember the bottle. Do I remember last night or did I take it early when I got up to let the dogs out in the yard? Did I take it? If I did, does that mean I took the other one too? OK, wait, go back to the beginning......Now, I think I didn't already take this.....'

One friend uses pill boxes to take the mystery and misery out of dosing times. But the little open spaces send me into fritters.

Is it empty because I already took the dose or is it empty because I forgot to put one in this spot when I filled the box? Or maybe it's empty because when I dropped the box and pills went all over the floor, I put the wrong ones back in this space. And, what's that little gray thing down there against the baseboard?????

Fortunately my sons are old enough that I don't have to worry about them picking up a stray pill and swallowing it. Unfortunately, they both inherited a sick sense of humor from somewhere and they find my 'antics' completely amusing. That's OK, I guess. They say laughter is the best medicine.

Just please, please don't put it in a bottle. I don't think I could handle one more!

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.