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.

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.

Blessings,
Matriarch

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.

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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!
Matriarch