Sunday, May 24, 2009

Happy Memorial Day Weekend!

Up North, back in Days of Horrible Cold, I lived in Chicagoland from age seven to 22. After making a great escape to Florida and warmth, moving all over this state, spending four years in New Orleans and Shreveport and one year back in Chicago, I came home to Florida for good.

Which doesn't mean I've forgotten, for one single second, those Days of Horrible Cold. Folks, the last couple of winters, you've finally seen some of the snow-and-ice brutality we had for three winters in a row in the late 1970's. I can out-Snow Story 99.9% of anyone reading here. I worked outside in that stuff.

Ah, but springtime...Spring is my favorite time of year, and always has been, since those early childhood days in sunny Southern California.

Moving up North? Well. ksis was four, k seven, kbro almost nine. Hopefully, all of us have finally forgiven the p'rental units for the great travesty of kidnapping us three innocent offsprings, tearing us away from sunshine and mountains, warmth and deserts, ocean and beaches and those round hills of golden grass, and people who at least acted friendly and considerate and welcoming...

then plunking us into an atmosphere of icy coldness in every sense of the words; into relentless gray from skies to trees to buildings to land; flat flat flat everywhere you turn; a few cornfields and cattle, a couple windmills, areas of wilderness, yes and a beautiful little spring-fed lake, a polluted river...that was about all.

Except for springtime. In spring there were days that were not gray.

kmom reminded me not long ago of a day in my first fall up north. It was us kids' first experience of cold, of snow, of ice. The birds had disappeared, it seems; and I wondered where they'd gone. Naturally, I asked my mom, who Knows Many Things, and tried hard to teach us kids in the same positive, intelligent, bright manner that guides her own life.

She explained:

--They all flew south for the winter!

and to her shock I burst into tears, sobbing uncontrollably.

Oh, my poor mother! We gave my parents no peace about this move they made way back in 1965. They're still there, in that beautiful spacious house, where I saw the third huge generation of 17-year cicadas emerging in droves when I visited two years ago.

My friend Sylvia, from Brazil, had a sister who moved to Denver. I asked Sylvia how she felt about this Denver business. She told me: --I'm a tropical girl.

Me too.

We made it through that first winter, and the ones that followed. Spring came. And over the years, Memorial Day came to represent the dividing line between winter and real spring, the kind of spring that was safe, that stayed. Sometimes Memorial Day was cold or rainy. But there was no snow or ice any more.

In springtime the birds come back.

An outing! Family time. We'd set out from the Far North suburbs and have a Memorial Day picnic with relatives in a Chicago park. Corn on the cob! Hot dogs, watermelon. Aged, distant relatives of my mother's, Esther, Ed, others, who'd all passed away by a few years after we'd met them. People in my family rarely die, and Ed's funeral was the only one I attended until my own adulthood. All four of my grandparents lived halfway to forever; but until we left the Southwest, it seemed only my father had other relatives besides his parents. This largish bunch of kmom's uncles and second cousins was a little bewildering.

A day off school! Civic duty time. As a Brownie, then Girl Scout, then playing the flute in the school band, I walked along in our tiny small-town Memorial Day parades. I never liked parades until I moved to New Orleans, and the arthritis made certain types of walking painful, so these were more endured than enjoyed.

My child's mind really didn't understand what all this was about, anyway. Our thin groups walking - I can't say anyone actually *marched* - various Boy and Girl Scouts and a little school band, maybe a 4H Club group I never saw or even knew existed elsewhere during the year...A straggly bunch of old men in odd pointy blue hats with VFW on them - over the years these were joined by young men, and sometimes there was a complete divide between the old and *new* veterans, they'd walk in two separate groups, seeming completely unaware of the others' existence.

We'd end up at a small country cemetery with bare spots in the grass paths, old headstones leaning, fine ones upright and almost glowing in that clear, young springtime light. One of the old vets in a VFW hat would make a speech about war and democracy and safety and remembering those who gave everything for us. Sometimes his voice quavered with age. Sometimes there'd be a gun salute, shattering the quiet air in the small country cemetery with sound and gunpowder smoke and shock waves reverberating.

Death is a part of life. How many times have we heard this? And death feeds life, it's that ancient cycle. We all die, one way or another.

But there's a difference, an added dimension, when someone dies in the course of working to save others. Whatever your beliefs about war, this is a nearly universal truth: those who enter it voluntarily believe they are there to protect the lives of others. Of us, here at home. And those who enter war involuntarily, or become part of the collateral damage accompanying all wars, make yet another sacrifice.

What they all did was this: they gave their lives to help preserve ours. To give us time to reach spring and see that sun shine again.

I tried to find out why Memorial Day is held at the end of May. Its history is shrouded in murk. Apparently it just sort of happened that way. A series of groups and towns independently arrived at the same time of year to honor their war dead.


Which makes perfect sense to me.

Friday, May 15, 2009

Bone Marrow Biopsy: Check.

It's done.

It went well. Not fun, of course; but not as bad as the horrible rumors one seems to hear about this procedure. How much of that was due to the great skill of this particular doctor is a matter of speculation.

He's a treat. Calm, funny, kind, open and interested in all that goes on around him. When I have bad medical experiences, health care workers like this go a very long way toward redeeming their professions.

Oh, it's done.

The follow-up visit is in two weeks.

Now I will rest.

And after that...perhaps I shall play.

These Dreams I Have

I really do have the most bizarre dreams.

I always did. But what I have now are antibiotic dreams. Apparently I'm not the only one who has this happen. They are truly weird.

Walter rarely remembers his dreams, so of course he stoutly insists he doesn't have any at all. HA! I listen to the man muttering in his sleep. Dreaming. He's probably REALLY lucky I can't even figure out which language it's in, much less understand what he's saying. ;-)

The dreams often contain these oddly inoffensive scenes of great and bloody violence. I mean, just awful stuff. Yet they can troop about my brain while leaving no sense of nightmare behind.

Last night was a combination of science fiction, roast beef, feeding my baby reindeer, and Spudnik.

You read that right. Not Sputnik.

Somehow, in my dream, I made that old joke out of it. For you young whippersnappers, this was the Soviet Union's space program in 1957, the one that beat us into orbit.

The roast beef episode was in some sort of boarding house or hostel run by an old man. I wanted it roasted low and slow, and was perfectly willing to do all the cooking myself, if only he'd be sure the oven was clean. This was late at night, like much of the dream, with an eerie silent spacey quality to it all. He seemed a bit grumpy that I wanted to cook at 2 am. (I've gotten that a lot throughout my life.)

Cut to outdoors, where another nighttime scene contained some visitors from outer space, with a number of folks rappelling down a rocky cliffy hill. In Florida. Next to a highway overpass. South Florida is notoriously flat.

The baby reindeer? It was SO CUTE! It was big and gangly, all legs like they are, and it twitched its tail most fetchingly. Someone from a biology program was trying to supply its special milk formula, but because of funding cuts, the milk was spoiled. Icky, nasty. Poor baby reindeer!

This took place in a vacant apartment. My old friend Sylvia was in the background sometimes, cleaning some apartments for customers.

We finally got the little baby reindeer to eat. We got some fresh cream and mixed it with mashed potatoes, which it liked.



The baby reindeer would nuzzle and nurse on the bottle, tugging hard, twitching its tail happily.

I woke up laughing to myself.

Until Walter handed me some very difficult news: We have no cream.

No cream? No coffee. Can't drink it that way, me.

On this day of all days.


He stopped smoking 3 days ago, and is having it very rough. I remember, and always will, how incredibly sickening it was for me to quit. He says he can't get to the grocery store for cream. I know this means he's in a hard place. We really can't afford it right now anyway. I don't even have the money for today's doctor copay: we spent $6.19 yesterday on insulin, and $15 for Dr. S. All gone.

And yes: If anyone can help with a $15 donation, it would be greatly appreciated. If not, we WILL get by. I know we'll find it some way. We always do.

But if a person ever looked to dreams for portents, I've figured this one out.

That cute damn baby Russian reindeer was EATING MY CREAM!


Thursday, May 14, 2009



No cancer.

No pneumonia.

No huge blooms of frightening fungal funk.


Seven biopsies, the man took. Seven.

And the lab found nothing wrong in a single one.

As a former smoker, believe me, I'm delighted to have this truly exceptional lung doc go poking around in there with such care, and tell me, --No cancer.

Or pneumonia or fungus or any other horrors. Especially when this former smoker is coughing up bits of blood, little as they may be.

Walter and I both noticed Dr. S seemed a bit PO'd at the lack of diagnostic guidance. He's not a doc who'd willingly let some damn germ put one over on him.

Here's a good place to explain something about how I think, analytically. Hey, Math Fans! You can probably appreciate why I'd willingly associate *thinking* with that very pretty, very useful math called Calculus.

When trying to diagnose a medical condition (or most anything else), we often start with a *snapshot,* then figure out what changed since that pic was taken. In the study of calculus - and of finance - a change from one point to the next is called an *increment.* The mathematical formula to describe a curve is calculus; the formula describes the changes in a line that could have been a straight line, but isn't.

Calc measures those increments, looking at smaller and smaller changes until they're so tiny they can't be seen with the naked eye, but can be expressed in a formula so comfortably that it correctly reproduces the curved line in question. (Okay, if you're not a Math Fan, but hated every second of the only calc class some vicious teacher or parent forced down your throat, maybe that formula could never feel comfortable to you. I'm the same way about electricity, so believe me, I'd never think any less of you.)

Say I'm looking at a sick plant. What's changed since last week when it seemed healthy? No rain, loads of rain, high heat, cold, plant food, no plant food, snails munching leaves... I look for an increment, a change, to guide me toward understanding the cause of the plant's illness, and therefore any cure. If cold never bothered it before, then chances are, this week's cold snap isn't to blame.

Identifying that incremental change can mean everything. Believing a change has occurred when it hasn't can steer you seriously astray.

So when a doctor questions me, I take care to say whether some event is new: whether or not it's *same old same old* is quite significant.

Dr S listens to me breathe. --Pain? Chest pain? --Always, but no change.

(He looks at me intently, inquiringly.) --I always have chest pain, all different kinds. It still hurts but there's no change in the pain from before. It hurts the same way it did when the blood started.

(Not localized knife-stabs, or a constant bad ache, but like breathing -20 degree/3% humidity air on a winter's day in Chicago. It hurts going in, but less when it's going out; it feels pretty much the same wherever the incoming air first hits lung tissue.)

--Fever/chills/night sweats? --Always, but no change. Nothing new except the same fever spikes I've been getting for a couple months now. My normal body temp is 97.4. Tuesday night it hit 99.1, which is very high for me.

--How much blood? --Just little bits, bright red, mixed with other lung stuff. Yesterday, a couple small dark pieces that looked like clots from a scabbed-over biopsy. --A tablespoon, a teaspoon? --No no no, tiny, like 1/4 teaspoon.

(--Breathe...he listens, moves the stethoscope in this dance where I need no directions but instantly know when he wants me to breathe again)

--Doc. Is the lab checking for fungal infections? --Yes. (If he were my cat April he'd roll his eyes in impatience. Well, they DON'T always do those tests, I really did have to ask.)

--So what is it?

--Inflammation. Bronchitis.

--Does this mean I have COPD?

(looking at me a bit sharpish, an odd look...) --No, those are two very different things.

(It's not that I want COPD. I want, and need, oxygen, but can't afford it. Medicare would pay for it if he'd 'fess up that I didn't really *cure* my longstanding COPD.)

He wants to do a follow-up CT scan in 3 months. Wants to put me on sulfa to ward off that nasty pneumocystis but I'm allergic to sulfa, so he writes a note to Dr C the ID doc about trying some other preventive stuff.

He HATES prescribing meds. *Hey. Patient! What are you DOING?!? Don't eat that, it's a PILL!!!!!!!!!* He especially loathes Prednisone. --How much Prednisone are you on these days?

I hate it when he asks me that.

Trying to save us both time, head him off at the pass, I say --80 mg-- then immediately launch into how tomorrow is the bone marrow biopsy, then we'll finally apply for the IgG boosters, yada yada yada... He likes that better than Prednisone any day of the week.

As much as I understand that No News is valuable news unto itself - as glad as I am not to have a Definite Horrible - I still feel some frustration at this sort of thing. Questions asked, unanswered.

Mystery. The unknown.

Despite all our advances, it can still come back to that. And often does.

Sometimes we aren't quite as big and smart as we think.

Tuesday, May 12, 2009

Bronch: Check.

Okay. One down on this week's To Do list.

It went well, for a bronchoscopy. Everyone seemed very competent and very nice. This was at Broward General. They impressed me again with their sterility procedures, and my bed was righteously decorated with the *BE AFRAID! BE VERY AFRAID!* signs that keep us all assured that we're mutually safe. Comforting.

When I said I felt a little *crashy* from diabetes, they didn't ignore it. They stayed careful about my blood sugar - like any surgical procedure, you can't eat or drink 12 hours before a bronchoscopy, so a diabetic can get Issues during surgery.

The anesthesia nurse wasn't attitudinal about pain control, for which she got my heartfelt thanks. While I was still conscious, she even used a little extra. Nice. Not taking my morning meds had left me resorting to the Teeth Gritting Method. I lay in their bed playing with my left-hand fingers. Just because I could.

Before they put me under, they gave me a breathing treatment of Lidocaine, the same topical anesthetic as in those lovely patches. Oh heaven! The lungs haven't been hurting all that bad; but sometimes dull constant pain can drive a person crazy worse than the knife-stab type.

I'd never even heard of such a thing as Lidocaine for Lungs! So when they told me what the breathing treatment was, I was awestruck; I breathed --Oh THANK you!!!-- and they all cracked up. Someone behind me murmured, --Isn't it funny how it's the little things in life?!...

and I relaxed and breathed like a Regular Person till I'd sucked it all down; then next I remember, I was coughing and coughing and wondering how much longer before we got started. Until someone told me it was actually all over. All done. Rest for three hours, then go home.

The doc said he saw nothing of immediate huge concern, but did take multiple specimens. That many biopsies is unusual. Often they take none, or just one. Thursday I get to hear if they've learned anything from them. I'll betcha $5 it's mostly fungal, meaning a lot will show up erroneously as *non-pathological;* but, this great diagnostician will know what it is, and what to do, with at least half of it.

That's about it. I'm sleeping a lot. The bleeding and so forth is about the same, so I've no new concerns. Now, just be patient and wait; and that's something I can do well.

YAY! Medical Update Duty done. Back to Fun Stuff!

Sunday, May 10, 2009


Complete with Virtual Flower and all.

Walter took these pix. Since kmom is sort of a mother to Walter too, it was only appropriate.

They actually talk on the phone far more than she and I do. This troubles me not one tiny bit. Oh, I revel in it! Seeing or listening to them together, enjoying each other's company the way they do, is a great treat. How could a person feel bad about something so inherently good?

I love peeking inside the flowers...

Raspberry crepes in bed.

That's what Mom says she expected this morning. Sounds perfectly reasonable to me. She is, after all, the mother of Dad's children.

He, however, made the distinction that she is not HIS mother.


Mom called the house of k bro. Who had the unmitigated gall to tell kmom - his OWN!!! MOTHER!!! - that HIS wife got no breakfast in bed either! And for the EXACT SAME REASON!

8-O !!!

People. This is an outrage! EsPECially in this day and age.

Gentlemen, listen. Fathers today have public men's restrooms with Baby Changing Stations inside. Much of Modern American culture holds it not just acceptable, but desirable, when dads actively nurture their kids. I'm talking way beyond attending Little League games or school plays.

What a wonderful change! Far healthier and happier for all. Those brave and loving men who took on highly nurturing roles by choice were often ostracised as unmanly, or ruining life for men who far preferred limited roles as breadwinners and weekend golfers. Watching this unfold, growing up, I puzzled over the allure of that limited standard; then rejoiced, watching the tremendously positive changes unfold over time.

That old standard did men wrong. Fathers, mothers, children alike were deprived of the sort of bonding that steadies and strengthens us all.

Of course, it made baby-raising no piece of cake for the mothers, either. Let's say supportiveness is considered weakness, damaging the fabric of family and the healthy growing independence of children. Would you want to do that to your loved ones? Not!

To my own satisfaction, those assumptions about supportiveness and such are sufficiently disproven by now. Thinking back, remembering how very hard my mother worked for us all and how very little we appreciated it, I'm filled with shame. When I called her today, she told me she'd been cleaning out the basement and found a certain item: a yellow pottery bowl, made by yours truly ever so long ago, inscribed underneath with: To a Loved Mother [k].

She cleaned it up and took it upstairs to her home office and filled it with paper clips.

ah, forgiven, forgiven!

I love this modern saying: *This is why lions eat their young...* It's nicely adaptable to all sorts of transgressions by children and adolescents. And gentlemen, if you did desire to have those kids - and to see them reach adulthood uneaten - why then, I do believe you owe a debt of gratitude to the mother of those children. After all, she worked very hard to raise them. And she didn't eat them either.

Of course she's not your own mother! She's the mother of your own kids. Surely your progeny is at least as valuable to you you are?

Casting my mind back, I tell you one and all: Really and truly, things were very different Back in the Day, when k was just a little kitten her ownself. Very different indeed...

Crib memories. Going back to age one and a half, maybe earlier. In Arcadia, California, we lived in our very first house, *the old house on Doolittle.* Which was Too Little. Onward we moved, into the *new* house. I was probably about two years old then, meaning kmom would be all of 24.

Mom was one of those extraordinary exemplary *Perfect Wives and Mothers* of her day. When we were small she turned her brilliant mind to caring for us and our home while Dad worked as a doctor.

Young docs, then as now, often don't make very much money. She managed superbly, though. Creatively. Like when she performed a neat early 1960's-style money-saving decorating trick, carefully papering the kitchen walls...with book jackets.

Oh, they were beautiful! Colorful and crazy-patterned like a quilt. Planned. Each book jacket was carefully pasted into place, individually, lovingly.


It saved a lot of money on paint and/or *regular* wallpaper, but it took days or weeks of careful hard work. We two kids were fascinated by it; we'd sit in the kitchen and watch and watch as she worked, and look and look at night when she was done.

Around this time Mom, far less apprehensive of New Foods than most, decided it was time to introduce her two little ones to a delicacy of her own childhood: *Corn on the Cob.* A plate of this bizarre item, steaming in the middle of the kitchen table, was viewed by us with great suspicion.

And I firmly explained I would never ever ever eat it. Never. Ever.

Somehow she convinced me to try it, and I loved it so much I even found the inner strength to admit the error of my ways. And have scarfed it down ever since.

So maybe I'd become a little more open-minded when she brought the pomegranates home.

kbro and I really liked them, and I don't think either of us made a fuss about trying them. Nope. Took to 'em right off the bat.

So much so that that brother of mine - who was Always Instigating Trouble - got out a pomegranate one evening when the parents were out of sight. It seemed harmless enough. Even virtuous. We were Big Kids, feeding ourselves a nice healthy snack.

I'm not sure how kmom will feel about peeking into this pomegranate...

The brother and I sat at the kitchen table enjoying our pomegranates. Indulging in the unique characteristics we'd discovered about them. Pomegranates are oddly constructed. The entire inside of the fruit consists of clumps of tight rows of seeds separated by weird looking membranes. Each little seed is individually covered with a firm pulp of fruit.

It's sweet and tangy. Extremely juicy. A delicious surprise in your mouth when you bear down on a seed and it squirts open like a teeny tiny cherry tomato.

Extremely bright, too! A brilliant cranberry red so persistent you can use it to dye cloth. Translucent, the color glows like a jewel when you hold the seed up to the light in admiration.

To a little bitty kid, those seeds aren't quite so tiny. Your toddlerish fingers are clumsier than you wish. They can't manipulate food with an adult's easy grace. But oh, do you wish they could! The urge to practice those moves is nearly overpowering. Instead of chewing a seed to bust through the skin, you might want to hold one in your little fingers and squeeze. Squirt the juice straight into your mouth, more or less. Cool!

Or...or, you could squirt it at your little sister's face instead. You were Always Instigating Trouble, after all. Heck, you're bro, it's your job!

Which state of affairs might then result in a friendly war. Complete with battle music!

Our song was this: Squirt squirt the little squirt! If I had a podcast I could sing it for you. Sing-song: squirt squirt the little SQUIRT! GOTCHA! HA HA HEE HEE HA HA HA!!!

Soon we were covered with gorgeous pomegranate juice from head to toe, singing away and giggling fit to beat the band, our hands slipping and sliding on the table top covered with juice as we grabbed around for more ammo. The noise of our merriment finally brought my mother in to see what was up.

Up. Up being an operative word.

Because when she walked in the kitchen she saw the entire room - freshly painted ceiling, walls newly papered with book jackets, new-laid floor, new-painted table, chairs - kids - everything in sight was covered with streams of sticky squirted brilliant red indelible pomegranate juice.

My mother never allowed another pomegranate to cross the threshold again. Not. Ever.

Not even when we were no longer 3 and 2 years old, but 50 and 49.

But however, this one here being My House...I can eat pomegranates whenever I want.

Cause I'm a Grown-up now.

Yup. Against all odds, I lived to tell this tale. Because THIS mother, despite great provocation, chose not to eat her young.

And if any dads out there are glad their own lionesses didn't eat their young, why, I think raspberry crepes in bed is a fine way to say Happy Mother's Day.

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Saturday, May 09, 2009


I noticed that in my absence, the blogroll got all jammed up. They provided no way I could see to make repairs; the blogroll shown for editing was the old unjumbled one. Worse yet? They suggested I pay $20 for their *no ad* service. ?!? Does this mean the jerks have been running ads on my site without my permission or knowledge?!

I have NEVER run a single ad. I've no problem whatsoever with bloggers who do, or bloggers who write *pay per post* or what have you. This is a private and very individual choice, and I have great respect for our rights as individuals to make those choices, and to remain respectable in the eyes of others when we do. Even if the choice is different from ours.

I do have a real problem with companies who try to trick people into advertising, or doing anything else, without full knowledge and informed consent. There's a name for that trick, and the name is fraud, and it's an act I detest.

So please don't take it personally if you find your blog's link has mysteriously disappeared. I'll do my best to get an updated roll up as soon as I can.

Friday, May 08, 2009


YAY! *Work* is done for the day. The favorite doc is visited, the blood drawn in her clean peaceful office; and it was a nice successful *stick,* three tubes from one little knuckle vein, all on the first try.

Dr C doesn't think I have TB. Her opinions on such matters are extraordinarily accurate, so that's comforting to hear. Way back at the beginning, she said this killer cold Walter and I got was just a good old-fashioned killer cold; and so far, the flu test agrees. She is amazing.

A bronchoscopy, she tells us, is not a horrible procedure any more. Ah, comforting there, too. She talked to Dr S, and she's glad it's being done. It's time.

Whee! *Done for the day* is always a happy state of affairs, isn't it? Now we can go back to Real Life for a while.

Thursday, May 07, 2009


The CT scan is done. Afterwards, at the appointment with Dr S the Lung Doc, he said there are shadows in my lungs. They're new: they weren't there in 2007, when I had the last CT lung scan done.

They're new, and they aren't good. It could actually be TB after all. Dr. S also brought up Pneumocystis, the rare fungal pneumonia that AIDS patients sometimes get. He may have seen something that indicated it; he questioned me about my immunity. I have been getting odd little skin fungal infections like other immunocompromised people do, so it wouldn't be a surprise.

A bronchoscopy is now on for Monday. The patient gets sedated, then the doc sticks a scope down the lungs, looks around in there, and takes a biopsy.

Here's our schedule for the next week or so:

Tomorrow - Friday - we'll see Dr C the ID doc. Bring her up to date on Dr S and the lung blood, and on the killer cold in general. Dr S also needs some bloodwork. Maybe I can get the blood drawn at Dr C's, a far nicer place than the Quest lab. If not, then after Dr. C, time to go see the Bloodsuckers of Quest.

Monday: the bronchoscopy. That's an all-day affair.

Tuesday: our first meeting with our (prospective) new foreclosure lawyer. Yep, Chase is still trying to steal my house.

Thursday: Dr S the Lung Doc goes over the bronchoscopy results with me. Maybe he'll figure out what's going on in there. I hope so, and hope it's treatable.

Friday: the bone marrow biopsy. The last *rule-out* test before trying for IgG shots. That is, until BCBS throws new obstacles in our path, changing the rules in the middle of the game. They will surely not want to pay for IgG boosters.

Wednesday, then, is our only weekday *time off* for quite a while. This weekend will be spent on lots and lots of paperwork-gathering for the foreclosure lawyer. That's working at home, but work nonetheless.

So you can see how it gets hard to do that *bed rest* thing, for either one of us.

But we're making sure to have fun too. Walter has been selling things on ebay - computer stuff he's gathered and repaired, or swapped with other computer folks. He's just started, and we're talking about very small amounts of money, but every little bit helps hugely right now.

Perhaps it'll lead to selling off some odds and ends we'd intended to put in a yard sale, too. Much easier on us, physically, to sell stuff on ebay, right?

And Walter seems a bit surprised at how much fun it is for him. He keeps clicking back to see if there are bids over $.99 yet, or how many *watchers* - lurkers - he's got.

And...and...we're cooking. Together, I mean. In the kitchen!

hee hee! I sit around, feet elevated, teaching and directing. He does all the actual work, gives me all the credit for what comes out well, and blames himself for everything else. It may take a while to beat that bad attitude out of him.

In all the time I've known him, Walter's just hated the kitchen. But last night we made our first actual *meal* together: risotto, and a stir-fry of pork and onions. It was really good.

And fun. Really, truly, fun.

Oh, yes. Life could certainly be worse.

Wednesday, May 06, 2009

Bringing All Y'All Up to Speed

heh! Speed actually not being much in my life lately, of course. So maybe you can do that part for me, see? ;-)

In the past, sometimes, I've tried to describe how going into these long-drawn-out bouts of illness gets me feeling nearly disconnected. Drifting along in the air, far far away, at the end of a fragile thread, just barely tethered to the earth, to the loved ones and friends and fellow blog-worlders and neighbors that remind me why I live.

I've never before been so far away for so long. Never come so close to letting that thread snap. Couldn't always remember why I'd worked so hard, times past, to return. It was puzzling sometimes, why a person would spend so much effort to make a hard landing when it was so soft and easy and quiet to just let go.

But as a wise friend reminded me once, while we were grieving over a mutual loss, I've always chosen life. Whenever I come to one of these crossroads, I take the path that brings me back to the only life I know, this life on earth. For whatever reason, here and now is where I belong. And so, it's where I'll be staying once again.

It's altered, though. In some ways the life in question has quite drastically changed, and for the worse, and forever. I want, or need, to describe it as best I can, but it might be hard for you to hear. And I don't like to make anyone sad.

So I'll tell you this, too: Sometimes these life changes have a sort of emotional anesthetic built in. Certainly I've been awash in it; there's even been some leftovers to help with the other rough spots, the harsh changes that hit their target full force, undiluted.

What I'll aim for is to post updates, maybe followed later on by LP versions, on some of the main events that have unfolded. Fill in backstories. Some you may find genuinely interesting. Some will call for gross-out alerts for any of the sqreamish that may come by, all innocently unsuspecting.

There may be a few little entertainments mixed in too, because who wants to think only about the hard stuff all day? I sure don't.

I'm quite weak these days; physically, mostly bedridden. Mentally, I go meandering about like my little cat April in her dotage. Result? Whatever makes it onto this *paper* may be disjointed, stopping and starting, with endings unconnected to beginnings. All untidy. Oh! But the good news is, I can get back to one of my best-loved hobbies in the world: answering comments, yay!

And please remember - this isn't a plan per se, it's just something I'm aiming for, see? Don't wanna mess up my Reverse Jinx.

No Swine Flu Here...But It's Allllllways Sumthin'

Okay, then. I shall now proceed to blow off a little *k's medical stuff* steam. You are forewarned! Proceed at your own peril, fully prepared to be grossed out, bored, impatient with my whininess, confused by excessive alphabet soup, what have you. Me, I need a little Complaining Time, so I'll indulge. You're certainly welcome to stay and read on if you like: it's your choice.

heh! Yes. You see, when you come right down to it, all of us have our lives in our own hands.

Here's a Current Event item: Until I read all your comments about swine flu, I had NO idea what a big mess it was, or how quickly it became one. When I wrote the last post a week ago Tuesday, it was still easy to be tongue-in-cheek about it.

The next day, Wednesday, I started coughing blood up out of my lungs. It wasn't much but it's still...disconcerting.

After some phone calls with my ID doc - a Real Doc - I went to the ER. Not Holy Cross or Imperial Point, but Broward General this time. Whereupon Walter and I were genuinely impressed with their infection control procedures, and with their entire staff.

With one glaring exception: the doctor.

In the end, the doc decided not to admit me. He declared I don't have swine flu or TB; said that I do have a viral upper respiratory infection; told me antibiotics don't work on viruses; and said he'd write a prescription for an anti-viral.

The staff cut me loose a couple hours later, and handed me the doc's prescription for...Zithromax. Which is not only an antibiotic - thus as totally irrelevant as he'd said! - people who are allergic to erythromycin shouldn't take Zithromax. Like me.

HA! Idiot. At least he did one thing right: a nasal swab for a flu test. It was negative. While it's not as accurate as the CDC test, it's highly unlikely I have swine flu.

Well! That's one less thing to worry about.

TB? Probably not. But I don't know if it's proved yet, one way or the other. Since I stopped coughing up blood on Sunday, I figured I was getting over the cold, or whatever this awful beastie is that's going around. I'd just keep resting and rattling and eating cough syrup. Ride it out. We really are getting better, Walter and I. Slowly but surely.

So much for Plans.

Today, Dr C and Walter and I and Dr S the lung doc are happily slinging scorn in the ER idiot's direction, as we do Lung Things over again, the right way this time...because this morning I woke up coughing bits of blood once more. argh! Tomorrow I get a lung CAT scan, then I'll see Dr S.

It's not that I forgot that lesson about calling the doc before you go to the ER. I just stopped at the wrong one, the Infectious Disease doc, when I should have called the Lung Doc too. The ID doc did the right thing by sending me to the ER. But the lung doc would have gotten involved at the ER and ordered a CAT scan and all. Don't worry, I'll get it down.

So for now I'm home again; and in excellent medical hands, folks. Truly.

How to Get Stuck in Bed

My life here is very circumscribed these days. Mostly I live in bed, resting, healing. I've been very sick for a very long time, and I'm not sure how much actual life function I'll be able to recover. I think that partly depends upon those IgG booster shots I want so badly.

The insurance company, Blue Cross Blue Shield/Health Options - BCBS - has to approve the treatment, and I think some sort of state medical board does too. The final hoop we jump through before applying is a bone marrow biopsy. That's done to prove the low IgG count - it's now down to 294 - isn't from a bone or blood cancer.

The biopsy has been scheduled and postponed three times. Now it's scheduled for May 15. Wish me luck, folks. Or maybe say *break a leg* instead.

Here at home I now have a hospital bed, one they call *semi-electric.* All the controls are electric except the control that raises the entire bed up and down. That's a hand crank!!! A safety feature, BCBS said, to keep the patient from doing something dangerous like raising their own dang bed up and down. They were delighted to hear my hands are too crippled to crank it. That was NOT nice!

And we do need it to be ALL electric.

Now - following BCBS's instructions - we have a letter explaining that my unofficial caregiver, Walter, is also disabled with a serious back and chest injury, and can't actually crank that sucker either. After we paid $60 for the doctor visit to get the letter, BCBS decided I must also have an rx for a *100% electric bed.* --? I'm pretty sure that's what you were given in the first place, folks. Can you look it up and see? --No. Only your doctor is allowed to ask. We call it Privileged.--

WTF?!? I'm not allowed to ask about my own prescription?!

Well, I'll have to back-burner that task for now. Pick my battles. You see, it means asking one of my docs for yet another free favor. We don't have any more $60. I can't even get my regular prescriptions filled because we spent the money for copays elsewhere. It's okay, the only thing I'm completely out of is the Lidoderm patches to make my mummy hands, but's just frustrating when BCBS changes up their stupid rules in the middle of the game, delaying sending me the bed I need, which of course is the whole point.

So I'll keep transferring between bed and wheelchair the unsafe way, wiggling around between a bed set at one height, and a wheelchair that's a different height.

How to Not Get Around Out of Bed, and Go Broke While Getting Insulted Doing It

The *wheelchair* we've been using isn't actually a real one. It's just a *companion chair* we got to push my grandma Helen around in. The user can't propel it, except by sort of pushing against the floor with their feet.

Problem there is...these particular feet don't work much any more, either. And that chair, it's hard to use smoothly, it's hard on Walter. But I have to have it now. Can't get to the doc, or even to the bathroom, without one.

Here's why.

When I went to Holy Cross in early March, I could still walk some. Errors were made by the admitting doctor, and I can no longer walk because of those mistakes.

That event will be a front-burner battle. It's just too egregious. If I let it pass, then one day that same doc will hurt someone else, badly. He will repeat his mistakes, because he made a point of telling me he doesn't believe he did anything wrong.

I'll just leave it at that for now, okay? It's a whole another Complaint Post all by itself.

A *real* wheelchair has been officially ordered, and BCBS expects it'll be approved in a few days. But before they deliver it I have to pay a $500 co-pay.

Which I also don't have.

Since I'm disabled and sick and have medical etc. expenses far higher than my Social Security income, and Walter's disabled and has no income any more, a social worker told me DCF will probably pay part of that $500. DCF - the Department of Families and Children - handles Medicaid and welfare claims.

(*gulp!*) Yes. Life has placed me in the tender hands of the people who lost little Rilya Wilson.

So I'm hanging on the phone calling the DCF/Medicaid folks, trying to figure out why they only approved a small amount of medical help for me, and how much they might contribute to a wheelchair copay. So far, their math is way different than mine.

But every time I call, despite my perfect willingness to *hold* for hours if need be, I can't reach a Real Human. See, DCF has this New Technique. Now the recording says there's high call volume - okay, they never do have enough staff to answer, we got that a long time ago - but instead of saying, *Your call is important to us, please hold,* they just say - *Please try your call again later.*


They never even bother lying about it. Nope. No *your call is important to us* from DCF!

Raising this odd little moral dilemma: Should a realist like me feel disappointed about not getting handed a polite little white lie? I mean, honestly! It's from the government!

*whew!* Good grief, what a lot of Complaint Posts! That's enough for now.

Yes. Yes, I'll even leave off contemplating those little moral/political puzzles, and watch some nice TV instead. It's only Rachael Ray on the Food Network, but Barefoot Contessa and Bobby Flay will be on pretty soon. Oh! And perhaps some nice Deadliest Catch! Not to mention, Cold Case Files and New Detectives have been showing cases I haven't seen before...OH! An episode of Deadliest Catch is on right now! ooooo, shiny!