Chronic Spring

Spring was a long time coming this year. Even as the snow melted and the robins came back the days still seemed too short, too dark.

But sooner or later every winter must end, no matter how deep or how dark, and even I can tell that the sunlight is brighter and lasts longer than it did in December. Staying stuck in the dark days of winter would require denial of the tulips rushing out of the ground and the fat, happy buds on the big old Forsythia.

Life is like that. Seasons come and go without care for personal metaphors. The garden dwellers that survived the winter don't spend a moment mourning their neighbors that couldn't make it until spring. Growth just goes on, filling the empty spaces until soon there is only green abandon.

So I'm awake and thankful and going about the business of every day. Still, something is different inside me. I am keenly aware of the brevity of life and the lack of promises we get from the universe. I've been careful not to push too hard or risk too much. Maybe that's been necessary, but maybe it's been a mistake.

This summer I'm going to risk. Big.

I haven't indulged my love of education since I found out just what chronic means. It's too iffy. I might pay my tuition and then never make a single class. Or get halfway through and not be able to finish. And exhaustion inevitably leads to payback. The spirit may be willing but the disease will take its toll.

Today, Spring is strong and I feel the same. I've made a decision to jump off a high bridge into a tank of icy water filled with man-eating sharks. Well -- really I've decided to take a class.

In August an internationally-known quilt artist will be teaching a seminar class for a week, just about an hour from where I live. I love her work. I drool to think of what she could teach me. But it would mean a hefty investment of funds, a week away from home, eight-hour class days plus evenings spent doing "homework". My first assumption was that I could never do it. Never. Nope. Not for me anymore. I'm chronic and helpless and have no options.

And have no patience with that kind of attitude from myself. I really want that class with Rosalie Dace, and I'm going to make it. I've talked to the good Dr. B and to my husband (who probably will qualify for sainthood before this whole thing is over) and to my friends who are going to be in the class. Now, I have something I haven't had for a long time; I have hope and I have a plan.

Friday before the class starts on Monday (this is in August) I am going to let my favorite nurse shoot my backside with a lot of steroids. I don't pitch for the major leagues so it shouldn't be a problem. I'm going to fill a prescription for more steroids and for something that will give me energy -- just for a week. And I'm going to go. Yes, I'll be pumped up like crazy and may not sleep that week. Oh, wait, I forgot -- I'm going to have a week's worth of sleep aids. And my buddies say that a rest period can be worked into the day.

I may fall apart half-way through and have to leave. Well, that's more of the class than I would have had before. And without doubt I will pay dearly in the week or two after my medicated state wears off. I know this is only possible because of the wonders of chemistry. So what. I'm going to do this thing. Yes, the cost is high. But I have the chance to learn from an artist I greatly respect. A chance to spend a week with women whose company I enjoy and who will be sharing the opportunity to grow in our art together. A chance to reach farther than I've reached in so very long.

Mostly, I have a chance to step outside my chronic life and taste life the way it used to be. How could I resist?

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.

Peace

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.

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

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.

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.


Peace,
Matriarch

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.
Matriarch

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.

Blessings,
Matriarch

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,
Matriarch

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.

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!

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.

Interlude

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.



Amen