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!