Thursday, July 20, 2006

Accidental Hermit

"Copious Sleep."

That's what some of my docs call it. At certain times of year, I sleep 12 or 14 or 18 hours each day, day after day. Usually it's in a 10-12 hour chunk, then one or three long naps.

It's from the allergies. From inhalants, like the seasonal big waves of pollen that wash over me like chloroform.

I absorb it from breathing, from pollen in the air contacting my eyeballs, even from my skin.

Avoidance is the #1 plan of attack. Avoiding foods I'm allergic to isn't always easy, because the food sensitivities change over time, and you don't always know what ingredients you're eating unless you do 100% cooking from scratch. Why I even make my own chocolate sauce. But the food allergies, that fascinate the docs so much - *If you're allergic to all foods, then every time you eat you can die! How can you be alive??* - foods are not nearly such a big allergy issue to me as inhalants are.

Avoiding air, now, that's downright tricky. This is why you'll see me refer to being locked up inside the house for days or weeks or months at a time: I'm staying in a controlled-air environment. I was always fine by myself; I'm very self-sufficient, and an introverted loner, and I thought I didn't need much human contact. That was before I really understood what unasked-for isolation feels like. I'm a hermit not by choice, but by accident.

When the pollen ramps up I'll switch to a nocturnal existence. Sleeping through the high-pollen hours of daylight means I need less sleep. Think about it: Most plants bloom in the day; at night the weed and tree flowers sleep, and soon the air is much cleaner. If I'm breathing naturally cleaner air I'm less allergic, so, less sleepy.

And, if I'm active in the *bad* hours, my body is more tied up in its battle as I quietly fight for life and consciousness in the day. In a high-allergy state, my immune system is pouring anti-allergen chemicals into my system. Histamine sets off a huge and complicated chain reaction in the body. It's war, and it's absolutely exhausting.

In my house are a variety of HEPA air filtration machines, humming away, cleaning my air for me. Most have *ionizer* buttons turned on, too. There's a double filtration system on my central A/C - electrostatic filter on the air intake, and a near-HEPA pollen filter where your A/C filter usually goes. I have an ionizer in my car, a 12-volt unit plugged into the cigarette lighter.

I'm taking high-dose steroids, Prednisone, 25 mg one day, then 45 mg the next. If you take higher and lower doses on alternate days, the side effects are lower. Stuff like facial hair, bone loss, facial swelling, weight gain, stretch marks, liver damage, diabetes, heavy bruising and *staining,* kidney damage, and cutting years off of one's life expectancy.

Not to mention, immunosuppression - the whole point of taking the Pred - leaves me more vulnerable to those deadly germs I carry, and germs I pick up from others. And with the infections getting worse, I've had to cut back on the Pred. I was taking more, before. I've already almost lost my left foot to infection - *luckily* it's only permanently maimed - and the recent surgery on my right hand has left it partially deadened.

Other allergy meds I take are diphenhydramine (Benadryl), 150 mg/day; doxepin (Sinequon) 10+ mg/day; guaifenesin (mucous thinner and expectorant); generic Flonase and Afrin inhalers; and asthma inhalers as needed. The Benadryl or doxepin alone would put a horse to sleep. For me, they usually have a paradoxical effect: The sleepiness induced by pollen is so pronounced, taking the antihistamines actually wakes me up by lowering the allergic response.

Time has no meaning for me. Days of the week don't matter, since I lost my job, my career, my profession at age 32. You can't work if you can't leave the house, or if you try your best and go there, but keep passing out at the office. Looks bad. It scared 'em.

Hours don't matter either. I cram most of my medical treatment needs into the winter months when I'm much healthier. When I have to do doctor days in pollen times, I see them in the morning, before the pollen and the gasses released from baking asphalt get their worst. Otherwise, who cares what time it is?

I drift along. It's really not so bad. Days and weeks and months pass by, and finally fall comes and I start to get better, then winter arrives. Everyone starts telling me how great I look. My face changes. My eyes aren't swollen half shut any more, but it's more than that. Partly it's just that I look aware again. Alive. A walking talking conscious self-aware intelligent and intelligible person.

Walter can tell when I just breathed something particularly allergenic. Sometimes he knows even before I do, he can see it coming on. He's never been able to describe what my face looks like, exactly, but it changes somehow, and he'll hustle me back inside or to a chair or grab my mask or oxygen or whatever, often a minute before it hits me and knocks me down.

When it does, I lose my sense of balance. Or almost pass out, or do, all the way. Once, long ago, I fell backwards down a flight of stairs. Sometimes my head starts rocking back and forth, slowly, like an animal hunting a scent. Weak, and can't walk. My lips get numb, my hands can't close, my sense of gravity disappears and I don't even understand which way is *up.* It's a bit like when I was a child and loved to spin in a circle, arms out, faster and faster, until I got dizzy and fell down because I couldn't feel how to stay upright any more.

Cognitive impairment. Can't talk. Short-term memory goes. Ask me a question, or to make a decision, and I'm lost. Like that time I was at the blood lab, and the lady at the window asked me my name - and I just froze. Could not remember. She understood, and asked me for my driver's license and saved my day and I will never, ever forget her.

And the pain, the pain, my God. And depression. I close my eyes and I can almost see the molecular actions going on inside, the biochemicals getting blocked from reuptake, or swarming into my synaptic gaps and pushing good chemicals aside, or nasty stuff plugging into receptors you'd rather were never filled. Sometimes I say I can't think good because the histamine is clogging up my synaptic gaps.

Once - again this was long ago - Walter and I were still living at the condo in Pompano Beach and it was impossible to get the inside air very clean, it was air shared with other units, and there was carpeting and upholstered furniture in there, everything awful to an allergic person. Still, the air outside was far worse. I'd been inside, *in jail,* for weeks. Too sick to read or even watch TV. But at least I could still talk to Walter, I had that much, and we love to talk. But then - that last little bit of function left me. He saw it. I couldn't talk any more and couldn't understand him very well, and I wanted to cry. It was all I had left and I couldn't even have that one little thing, to be able to pass some time talking with the man I love, it was gone and I felt such despair...

That was before I finally agreed to take the high dose steroids. Doctors either love it or hate it, and I believe much of the *hate it* results from social pressure, fashion, more than science. Some doctors I have now never knew me back then. My rheumatologist is a Prednisone hater on principle. He refuses to accept that I made a conscious and informed choice to take high dose steroids and that I don't regret it one bit.

I spent 6-10 months a year bedridden before I took the steroids. That's not living. I know I'll die sooner now. So what? I was mostly dead already. I lost so much of my life to sickness and I'll never have it back. Time I could have spent with my grandmother Helen before she died, when she needed me and I needed her and instead I was asleep in bed. Better to have more life now, when I'm still 48, and still healthier than I would be at 58 - would be, with or without taking steroids.

Last year, I did little posting during the summer. I try very hard not to get on my own case too much over my disabilities, my limitations. But I wanted to try, this year, to keep posting through the bad times. I told my Pops, Desert Cat, my true blogdad, that I would post just about anything rather than stay silent. And I mostly have kept up. And I tell you, there is little in this world more wonderful than hearing your blogdad say, *I'm proud of you...*

Don't be sad for me. It's much better than it used to be. And I have something few people do: When you're living on gravy time, when you could have, maybe should have, been dead several times over already, you can develop a sense of freedom that others never achieve. I don't like country music much, but somehow I heard a country song come on the radio, *Live Like You Were Dying,* and I laughed and cheered. Oh, I can relate.

I enjoy the hell out of my life. I no longer care if people think I'm ugly or look unfashionable or eccentric or foolish. I really and truly don't give a rat's ass. I'm alive, alive and kicking, and I have most everything a human truly needs, including real love. How rare, how very rare and fortunate, that is.

I do things I enjoy the hell out of that many people are afraid to do, like getting all dirty when I garden. I do almost nothing that I don't enjoy, and the icky stuff is almost always medical stuff, and I deal with that pretty well now, I think. (How do you get to be great? Practice, practice, practice!) I'm never ever bored, and that's about the only thing I hate to be, is bored. I don't have to go to work and deal with work stress any more, and driving in rush hour traffic and wearing panty hose. Poverty stress, sure, but hey. I'll take it. This is not just *happy talk,* I hate that kind of bullshit, and you know what? I don't have to do it. I don't have to do ANYTHING but live.

This is all just a roundabout way of saying, *Slow posting, folks. Bear with me.*


kenway said...


Nancy said...

Take care. Do what you need to do, it's all any of us can do.

Sassy Sistah said...

Yep, you take care of YOU first and foremost, ks. Sending you a gentle (((HUG)))

Desert Cat said...

Well I *am* proud of you. In fact you've been keeping it up so well this year that I'd almost forgotten this is the bad season for you.

Take care.

LL said...

Damn girl, you're like the bubble boy! I never realized it was THAT bad. You're in my thoughts and don't worry about blogging.

pepektheassassin said...

k, you are a beautiful, vibrant, smart lady with a gallant sense of humor about life and its injustices and infirmities, even when you are asleep! So, ZZZZzzz..z..z....

k said...

You guys. You guys are the GREATEST.

Jean said...

wow...what an amazing, admirable human being you are...pure strength
and love of life...again, wow.

Smoke said...

Drugs are just bad, you should try to use Herbal Alternatives as a temporary replacement to loose the dependance!

John P. McCann said...

I'll be here when you get back.

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