My first allergic reaction took place when I was 22 years old. In May of 1980 I'd separated from my first husband after five and a half years together. Our relationship was extraordinarily unhealthy, although I truly didn't realize it at the time. Back then, you see, we didn't much discuss the various forms of abuse that people can foist upon each other. Certainly not to children. It was considered unhealthy, even dangerous, and unsavory to talk about it. I was sixteen when I met the man, and unbeknownst to me, had been raised to be a ready target for a particular type of predator. His type.
Why is this relevant?
When a person who's spent 25% of their life under the control of a profoundly expert manipulator is separated from that controller, odd things can happen. Instead of feeling joyously freed, their existence is shattered. It takes time and adjustment for them to understand how to live alone, by and for themselves, apart from the control of another. Often they feel nothing at all. Only emptiness. Nothingness.
The condition is common among newly released hostages and prisoners of war as well. Those who have never experienced it or studied it can scorn this state of being, and scorn the person trying to recover from it. While I understand their scepticism, I don't always tolerate it in silence.
There is no gentle way to say this: Their attitude is born of ignorance and hubris, and I'm sorry to see such a lack of empathy for people who have been so deeply damaged. There's an assumption that *They* would never succumb to what they perceive as weakness. My own experience tells me the opposite is often true.
I'm trying to explain the state of mind, and the state of emotion, I was in when my initial, extreme allergic reaction took place. Physical health and emotional health influence each other so strongly that the onset and outcome of physical health crises are completely altered when there's also a lack of emotional health.
Here's how it all went down.
As children, my brother and sister and I were always getting strep throat and taking penicillin for it. One fine day, as a young adult, I got one of my last cases of strep. I took my penicillin. They didn't give me a long enough course of antibiotics - as usual - and I relapsed and had to take them all over again.
On the very last day, just after taking the very last pill, I started itching. I noticed a red lump on my arm.
Weird.
It didn't look at all like a mosquito bite. Maybe a spider bite?
I went to the store and got some Raid. I sprayed in every high and low corner of my old Chicago apartment.
Hmmm. Thing was...I didn't see a single spider. Or mosquito or anything else that might bite.
And the itching was getting fierce.
Really really bad. Maddening.
More lumps were forming. And red rashes.
I called a friend. This friend, J, was my co-worker at the post office, and understood medical things, and was a sweet guy. Totally unexcitable, and he spoke with the slowest drawl I'd ever heard from a northerner.
To top it all off he had a car. I had no car at the time - I gave the husband everything in our divorce - so I wanted my friend to drive me to the ER.
Since I would normally have taken the bus, he figured out it was something very bad.
And it was.
When we got to Walter Reed ER in downtown Chicago, the one doctor on duty wasn't sure what to do. He was young and unformed, green. The admitting nurse, much more experienced in emergency medicine, took one look and said, --Oh, allergic reaction.
The doc was confused, though, because one symptom was this: I'd made these brilliant red circular disks, like silver dollars, on every joint where I had arthritis.
This was bizarre. He thought maybe it was some sort of arthritis attack.
And he really didn't want to disturb the *real* doctor, the "on-call," who'd been on duty too long and was exhausted and catnapping somewhere upstairs.
They didn't let my friend in the ER with me. Things were very different back then. Sort of...hostile, to patients and their friends in the ER.
I was sitting on a bed in a little cubicle that was enclosed with a curtain on a rod that they could never quite shut all the way. I couldn't see the whole ER but I saw part of it through the sliver in the curtains. This ER was enormous, endless, with a concrete floor, an industrial warehouse look to it. It was so huge the staff had walkie-talkies to communicate from one end of the ER to another.
I quietly sat on the bed and slowly scratched myself bloody, watching these white and blue and red lumps grow on me with a sort of detached interest. Curious, those red coins on my joints.
The doc would come see me every 10 minutes or so. He'd check my vital signs, look around at the things happening to me, stroke his clean-shaven chin as if he had a goatee, frown, and say, Hmmm.
Then he'd turn around and leave and close the little curtain...almost...
It was a quiet night in the ER. Sunday night, I think.
A guy came in who'd been in an accident, maybe hit by a car.
I saw him through the little crack in the curtains. He was on a gurney. A couple of nurses and the doctor were hovering over him, hushed and serious.
His head wasn't right. But he was talking.
I was fascinated.
His head was caved in on one side like a basketball someone had stepped on.
But he was talking. How in the world could he talk?
I strained my ears. Was he saying, --Tell my wife I love her, tell my kids too, tell my parents I forgive them for that time they...
I heard the doc ask, --BP?-- and a nurse say, --54 over 30 and dropping.
They really weren't doing anything with him any more. Just standing there watching him.
It sounded like he was describing a car accident. Some guy was going this way and hit him...
then he was quiet and they were too and they wheeled him away somewhere. Slowly. No rush any more.
The doc came back and looked at me and frowned and said, Hmmm.
He turned around and almost closed the curtain. I could see him nearby at an upright table, almost like a lectern, with this enormous book on it. Imagine the Oxford Unabridged Dictionary, and double it. The book was anchored to the lectern by a long and sturdy brass chain.
He opened the book and flipped through the pages, one by one. Looking. Looking.
I looked at the things happening on my skin. The lumps were growing into little blue-white volcanoes. Perfect cones the size of walnuts or bigger. They itched and hurt and I scratched and bled. I had several on each arm and leg, my left ear, my face, a particularly large one on the first finger of my left hand. The rashes were everywhere too, lots on my stomach and back. I was very small then and very limber and felt lucky I could reach every bit of my back to scratch it.
Everywhere I scratched, it left a red stripe. Any place on me that wasn't solid red, or white-blue, I had zebra stripes from head to toe.
The perfect red circles over my joints hadn't changed.
My friend J was allowed in for a brief visit. He told me not to scratch, that I was making it worse. I said, Ha! I don't believe that. How ridiculous! Ignorant. An old wives' tale. We quarreled, jokingly, and asked the doc to come settle our dispute. He said, Huh? all startled, and didn't smile, and said absentmindedly, --No, it's okay to scratch, try not to bleed though-- and left. Haha I won!
They made J go back into the waiting room.
The doctor came back in and took my vitals and looked at me and stroked his chin and said, Hmmm.
He almost closed the little curtain, and went back to the Big Book. He flipped pages, one by one.
Another patient came in the door. It was a woman in labor. I'd never been anywhere remotely near such a thing before, never learned much about childbirth. This was way before they had Pregnancy Friendly areas and attitudes in hospitals, and they weren't being very nice to her.
In my humble opinion.
She would scream. The doctor and two nurses gathered around her. They'd all look between her legs and say, --Push!-- and she would scream this bloodcurdling scream. I heard words that were strange to me - dilated, crowning. They ordered her to breathe in and out, in and out. They were very irritated at her, they spoke sharply and impatiently, all nasty and rude.
Finally when she screamed again one nurse said, --Oh, cut it OUT!-- in great scorn. --I'm not dealing with this shit anymore,-- she announced to the air, stalking away in fury. They wheeled the lady away somewhere.
The doctor did his thing and checked on me, hmmm, went back out and flipped pages again, running his finger rapidly down each page before turning it.
Ah! Something new and interesting. The palms of my hands had turned bright red like the circles on my joints, pure brilliant red, like thinned arterial blood. Very pretty color. Eye catching.
Quite.
The blue-white volcano on my left forefinger was still growing. The finger was swollen way past sausage size, almost 3" wide. It was so huge it stuck out sideways from my hand, like a new limb all its own. The knuckle ached and I wondered if the bone would break.
As I watched it, very very slowly, the skin on top of the finger started to part.
This was particularly interesting. It was splitting wide open. Like a sausage overcooked.
But it wasn't splitting in a straight line really, it was more like interlaced fingers or threads pulling apart. Not tidy. Not how I'd thought a finger splitting open would look like.
By now, around four hours had passed. My eyes were swollen almost shut and leaking fluids and different kinds of goop everywhere, some yellow, some clear, some red. My ears were brilliant red and puffed all huge, standing away from my head at right angles like the guy in Mad Magazine. I had little beads of blood covering me from head to toe, scratching the skin off then absently cleaning pieces of skin from under my fingernails, wondering if itching could make a person go literally insane because I was concerned I might just start screaming like the pregnant lady and never be able to stop.
Instead, I asked them to bring my friend in.
He came. I was very tired but I concentrated hard because I wanted to tell him important things. If I didn't make it I wanted him to tell my family I loved them, and make sure the ex didn't come to the funeral. Have it be a regular one with an open casket if they could make me look okay, because people need to say *Goodbye* sometimes; but after that, cremate me.
He gave me a look and rolled his eyes and drawled, --God, k, don't be so melodramatic,-- and grinned, and left, almost-closing the curtain behind him.
He walked up to the doctor, who was standing at the lectern flipping the pages in the Big Book, running his finger down the pages, still searching for an answer.
J said, --Hey.
The doctor looked up, startled.
My friend gently grasped the doctor's shirtfront in his fist and said very slowly, very quietly, --Look. If you don't know what the hell to do, get someone down here who does. Right now. Right now. I mean that.
The doctor looked at him and was quiet and then he said, Okay.
He went to the phone and made a call but I couldn't hear what he said.
A few minutes later, this man came in the room. He had curly light brown hair and a lantern jaw and high cheekbones and green eyes. A white shirt and a necktie, completely undone. Expensive gray flannel slacks. Sneakers. Back then, no one ever wore sneakers with good clothes, ever. I was amazed at his audacity.
He was one of the most handsome men I've ever seen in my life, to this day.
I grinned and thought, --Oh, so they sent an angel to save me. Nice.
He exuded competence from every pore.
I felt relief wash over me like a warm bath, like sunshine, like a rainbow.
He came in, shook my bloody hand, looked around, asked a couple questions. I couldn't talk very well any more. I told him how bad my throat and chest felt. --How does it hurt?
--Like an elephant is stepping on my chest.
He went to the newbie doc and said, with some impatience, --This is a classic case of delayed anaphylaxis. Give her x cc's of epinephrine and x cc's of Benadryl...
and he walked away.
And they did. There was a sudden change in atmosphere, a sense of purpose and direction. The two main nurses got busy and bustle-y, going in cabinets, prepping syringes, taking my BP again and leaving the cuff on this time.
By now, around five hours had passed. They told me the shots would put me to sleep.
But they didn't for quite a while. I had to go to the bathroom, to poop, and I couldn't walk or anything, so the two nurses had to wheel me in to the bathroom and basically do most everything for me, and I was completely puzzled as to why I didn't feel all humiliated. They kept gossiping over my head the entire time, almost as if I weren't even there; and I thought perhaps that was why, and was grateful to them for being the way they were.
About fifteen minutes after the shots, I was hardly itching at all any more. The swellings were going way down. The red marks were fading. My finger stopped splitting open. And suddenly I was overwhelmed with sleepiness and I lay down and passed out.
A couple hours later, I woke up. It was morning. Everyone I knew was gone. There were different doctors and nurses and a hum of human activity instead of that eerie early-hour stillness. The new staff came in to talk to me, these people all interested and curious instead of impatient or bored. I was sent home with all sorts of instructions and follow-up appointments and told I'd probably need to rest for a few days, and they were right.
My friend J took me home and made sure I was safely inside. Just before I went to sleep in my very own bed, I thought about this: I had been sitting in that ER between a man who was dying, and a woman who was bringing forth new life. Death on one side, life on the other. I sat there in the middle, watching my body come unglued before my very own eyes.
That sort of experience is often life-changing, thought provoking, inspiring.
And still, I didn't feel one thing. I felt nothing inside. Nothing at all.
Friday, April 27, 2007
Allergies
This year the pollen count is already skyrocketing. Predictions are, it may be the worst pollen season in recorded history.
All the infection issues I've dealt with over the past few years have obscured the fact that my initial and underlying disabling condition is, simply: allergies.
We usually think of an allergy attack as a response to a particular exposure. A discrete, rather than continuous, event.
Superallergics - hyperhypersensitives, those with Ideopathic Allergy Syndrome, whatever the current buzzname is - live in a continuum of allergic response. Treatment requires a whole different approach.
I've been in a continuous state of allergic reaction since 1990. It ebbs and flows, generally following the content of inhalant allergens in the air. Sometimes the allergic condition is not that noticeable - although even then, it's only because of the huge load of immunosuppression, antihistamines, Vitamin C, and environmental controls I use.
Other times it's so severe, even under the maximum controls available, it's completely debilitating. I get dizzy, lose my balance, pass out. Sleep copiously, often 18 hours per day; lose my voice; develop cognitive impairment that makes it difficult to think, to express thoughts, and especially to make even simple decisions. I can't drive safely. Sometimes I'm fine when I leave the house, but become impaired enough after outside exposure that the only right thing to do is ditch the car and have friends or a cab drive me home.
I switch to nocturnal life, because sleeping through the peak pollen daylight hours helps. I have much more function that way, and under the height of allergic response, function is the focus.
Not to mention: my control over the allergic response is tenuous at best, so keeping it as controlled as possible is important for safety's sake. I say I have one foot in anaphylactic shock and the other foot on a banana peel.
If I slip, I die.
There are several ways to die from an allergic reaction. Anaphylactic shock is one, but it's extremely rare. Literally, it can kill a person in just seconds. Anaphylactic-type reactions are more common, and usually slower; there's a bit of time there. Time to find an Epipen, an injection of epinephrine, like adrenaline, to save a life. Both these reactions are dramatic and frightening, with a display of symptoms that boggles the mind.
Here, I'm going to talk a little bit about how allergies work.
I got rheumatoid arthritis when I was eight years old. Serious RA runs both on my father's and my mother's side of the family, and allergies run on my father's. We also tend toward longevity, often living well into our 90's or 100's.
So we live forever - limping and sneezing all the way.
Immune response is remarkably variable and complex. We develop different types of antibodies, *attack* cells, to specific substances like viruses and bacteria, and sometimes to perfectly harmless or even necessary things like food. Sometimes an immune response comes in the form of enzymes rather than antibodies. Another way we combat illness is simply by fever. Higher body temps that we can survive can kill off germs, who can't take the heat. That's also why inflammation is a part of rheumatoid arthritis, which is autoimmune; and of infected cuts, where antibodies have gathered to fight the foreign invaders causing infection.
The immune system is like an army, like any armed service. It has spies, detecting the presence of invaders. Navigators, to direct the warriors to the battle. Foot soldiers who'll lay down their lives on a suicide mission to kill. Others who'll simply bombard a perceived enemy with artillery or poisons. It has secret weapons it only pulls out under special conditions.
When an immune system attacks one's own body, it's called being *autoimmune,* immune to your own self. When it attacks perfectly harmless substances like eaten or smelled peanut butter, that's an allergic response. Various types of allergic responses are called hypersensitivity reactions. There are at least four major types.
For many of us, these *Immunity Gone Wrong* conditions run together. Our immune systems, confused but still powerful, attack both our own bodies, and benign *foreign* substances like foods or pollens or mold.
I like to anthropomorphise all this. It entertains me, and clarifies the action for my poor befuddled brain.
So here's how I'll think: HELLo!, says immune system, waking up to a certain smell, sensing a presence that sets off its alarm bells. It goes: Oh! Whatzzat? check it out! It must be…I think that's…hey it's, it's PNEUMONIA!!! WWWHHHAAARRRGGGHH!!! aTTACK!!!
And it gathers up its friends and relatives, its army of soldiers and tacticians and supply sergeants and camp followers, and rushes to the scene, bravely vanquishing…my knee.
Yup. Not pneumonia there, Mr. Immune System. You just ate my knee, and now it's all full of arthritis and red and swollen and warm, inflamed. You threw everything you had at it. Gee. Thanks. Great job, there. You got everything right except identifying the enemy. Another blatant IFF failure. A Friendly Fire Incident.
Tilting at windmills.
One thing in common among various allergic reactions is the release of histamine. Cells have at least two receptor sites for histamine, called H1 and H2. Antihistamines usually act by blocking the receptor sites for H1 - classically, Benadryl (diphenhydramine). A fascinating accidental discovery lead to an H2 receptor blocker, Tagamet (cimetidine). Made from jalapeno peppers, Tagamet was originally developed to treat acid reflux disease. It's helped some otherwise untreatable allergics since its H2 receptor block characteristic was discovered.
Histamine itself is an antigen, a substance that triggers further allergic reaction. Sometimes, while getting allergy tests, a doctor will order a histamine reaction test too, as a control of some sort. The one time this was done on me, it quickly sent me into such a profound reaction I nearly died.
Good old histamine. I'm superallergic to histamine itself. Talk about a vicious cycle...!
Histamine is the culprit that gives us our runny eyes and nose and even ears, and the itching and rashes and hives and so forth. When the cognitive impairment befuddles me, I say histamine is blocking my synaptic gaps. Balance and speech and thought impulses just can't get through - there's no room in there. Histamine's hogging all the space.
I know we produce it for a reason. But since the erroneous release of histamine has destroyed much of my life, I have a special place in hell for it. Fair of me? Perhaps not. But, there it is.
Docs tell us that it takes two exposures to develop a specific allergic reaction. The first exposure triggers the formation of antibodies to a particular substance. The second exposure sends the new antibodies on the attack.
The initial antibody-developing exposure could be the first time you encounter that substance, or the millionth. That's why some of us develop allergies later in life, the *adult onset* variety. Many people will experience that for the first time this year.
But there's another way to get antibodies: we can also be born with them. The name for this is *atopic.* In days past, doctors used to inject penicillin to combat serious infections like pneumonia. A first exposure to penicillin *shouldn't* cause an allergic reaction. But, if you're atopic, you're already allergic at the first exposure. Too many children died from injected penicillin, and today, injecting any antibiotic is done with great care.
In my family, with a known history of allergies through the generations, we're clearly atopic. We not only have a wide variety of inherited allergies, we're far more susceptible to developing new ones throughout our lives.
My brother showed his allergies as a child. Me? I didn't display the usual symptoms. But I am atopic, and looking back, I may have been showing lesser-known symptoms at a younger age than anyone realized at the time.
This year, many of you will either experience bad allergic reactions, or see them in people around you. Already, I'm way sick, far more this year than I have been for several seasons. If there's any good to be found in what's happened to me, it will lie in my ability to help other affected people understand what's happening to them. And, of course, how to deal with it and feel as much better as they can.
I'm no doctor and I never ever forget that. I am a patient. As a patient, there are things I can explain and questions I can answer. As much as I can, I will.
I'll start with a post about the first time I had a known allergic reaction. Unfortunately, that first time almost killed me. Fortunately, I survived. I lived to tell the tale, and it's time to tell it to you.
All the infection issues I've dealt with over the past few years have obscured the fact that my initial and underlying disabling condition is, simply: allergies.
We usually think of an allergy attack as a response to a particular exposure. A discrete, rather than continuous, event.
Superallergics - hyperhypersensitives, those with Ideopathic Allergy Syndrome, whatever the current buzzname is - live in a continuum of allergic response. Treatment requires a whole different approach.
I've been in a continuous state of allergic reaction since 1990. It ebbs and flows, generally following the content of inhalant allergens in the air. Sometimes the allergic condition is not that noticeable - although even then, it's only because of the huge load of immunosuppression, antihistamines, Vitamin C, and environmental controls I use.
Other times it's so severe, even under the maximum controls available, it's completely debilitating. I get dizzy, lose my balance, pass out. Sleep copiously, often 18 hours per day; lose my voice; develop cognitive impairment that makes it difficult to think, to express thoughts, and especially to make even simple decisions. I can't drive safely. Sometimes I'm fine when I leave the house, but become impaired enough after outside exposure that the only right thing to do is ditch the car and have friends or a cab drive me home.
I switch to nocturnal life, because sleeping through the peak pollen daylight hours helps. I have much more function that way, and under the height of allergic response, function is the focus.
Not to mention: my control over the allergic response is tenuous at best, so keeping it as controlled as possible is important for safety's sake. I say I have one foot in anaphylactic shock and the other foot on a banana peel.
If I slip, I die.
There are several ways to die from an allergic reaction. Anaphylactic shock is one, but it's extremely rare. Literally, it can kill a person in just seconds. Anaphylactic-type reactions are more common, and usually slower; there's a bit of time there. Time to find an Epipen, an injection of epinephrine, like adrenaline, to save a life. Both these reactions are dramatic and frightening, with a display of symptoms that boggles the mind.
Here, I'm going to talk a little bit about how allergies work.
I got rheumatoid arthritis when I was eight years old. Serious RA runs both on my father's and my mother's side of the family, and allergies run on my father's. We also tend toward longevity, often living well into our 90's or 100's.
So we live forever - limping and sneezing all the way.
Immune response is remarkably variable and complex. We develop different types of antibodies, *attack* cells, to specific substances like viruses and bacteria, and sometimes to perfectly harmless or even necessary things like food. Sometimes an immune response comes in the form of enzymes rather than antibodies. Another way we combat illness is simply by fever. Higher body temps that we can survive can kill off germs, who can't take the heat. That's also why inflammation is a part of rheumatoid arthritis, which is autoimmune; and of infected cuts, where antibodies have gathered to fight the foreign invaders causing infection.
The immune system is like an army, like any armed service. It has spies, detecting the presence of invaders. Navigators, to direct the warriors to the battle. Foot soldiers who'll lay down their lives on a suicide mission to kill. Others who'll simply bombard a perceived enemy with artillery or poisons. It has secret weapons it only pulls out under special conditions.
When an immune system attacks one's own body, it's called being *autoimmune,* immune to your own self. When it attacks perfectly harmless substances like eaten or smelled peanut butter, that's an allergic response. Various types of allergic responses are called hypersensitivity reactions. There are at least four major types.
For many of us, these *Immunity Gone Wrong* conditions run together. Our immune systems, confused but still powerful, attack both our own bodies, and benign *foreign* substances like foods or pollens or mold.
I like to anthropomorphise all this. It entertains me, and clarifies the action for my poor befuddled brain.
So here's how I'll think: HELLo!, says immune system, waking up to a certain smell, sensing a presence that sets off its alarm bells. It goes: Oh! Whatzzat? check it out! It must be…I think that's…hey it's, it's PNEUMONIA!!! WWWHHHAAARRRGGGHH!!! aTTACK!!!
And it gathers up its friends and relatives, its army of soldiers and tacticians and supply sergeants and camp followers, and rushes to the scene, bravely vanquishing…my knee.
Yup. Not pneumonia there, Mr. Immune System. You just ate my knee, and now it's all full of arthritis and red and swollen and warm, inflamed. You threw everything you had at it. Gee. Thanks. Great job, there. You got everything right except identifying the enemy. Another blatant IFF failure. A Friendly Fire Incident.
Tilting at windmills.
One thing in common among various allergic reactions is the release of histamine. Cells have at least two receptor sites for histamine, called H1 and H2. Antihistamines usually act by blocking the receptor sites for H1 - classically, Benadryl (diphenhydramine). A fascinating accidental discovery lead to an H2 receptor blocker, Tagamet (cimetidine). Made from jalapeno peppers, Tagamet was originally developed to treat acid reflux disease. It's helped some otherwise untreatable allergics since its H2 receptor block characteristic was discovered.
Histamine itself is an antigen, a substance that triggers further allergic reaction. Sometimes, while getting allergy tests, a doctor will order a histamine reaction test too, as a control of some sort. The one time this was done on me, it quickly sent me into such a profound reaction I nearly died.
Good old histamine. I'm superallergic to histamine itself. Talk about a vicious cycle...!
Histamine is the culprit that gives us our runny eyes and nose and even ears, and the itching and rashes and hives and so forth. When the cognitive impairment befuddles me, I say histamine is blocking my synaptic gaps. Balance and speech and thought impulses just can't get through - there's no room in there. Histamine's hogging all the space.
I know we produce it for a reason. But since the erroneous release of histamine has destroyed much of my life, I have a special place in hell for it. Fair of me? Perhaps not. But, there it is.
Docs tell us that it takes two exposures to develop a specific allergic reaction. The first exposure triggers the formation of antibodies to a particular substance. The second exposure sends the new antibodies on the attack.
The initial antibody-developing exposure could be the first time you encounter that substance, or the millionth. That's why some of us develop allergies later in life, the *adult onset* variety. Many people will experience that for the first time this year.
But there's another way to get antibodies: we can also be born with them. The name for this is *atopic.* In days past, doctors used to inject penicillin to combat serious infections like pneumonia. A first exposure to penicillin *shouldn't* cause an allergic reaction. But, if you're atopic, you're already allergic at the first exposure. Too many children died from injected penicillin, and today, injecting any antibiotic is done with great care.
In my family, with a known history of allergies through the generations, we're clearly atopic. We not only have a wide variety of inherited allergies, we're far more susceptible to developing new ones throughout our lives.
My brother showed his allergies as a child. Me? I didn't display the usual symptoms. But I am atopic, and looking back, I may have been showing lesser-known symptoms at a younger age than anyone realized at the time.
This year, many of you will either experience bad allergic reactions, or see them in people around you. Already, I'm way sick, far more this year than I have been for several seasons. If there's any good to be found in what's happened to me, it will lie in my ability to help other affected people understand what's happening to them. And, of course, how to deal with it and feel as much better as they can.
I'm no doctor and I never ever forget that. I am a patient. As a patient, there are things I can explain and questions I can answer. As much as I can, I will.
I'll start with a post about the first time I had a known allergic reaction. Unfortunately, that first time almost killed me. Fortunately, I survived. I lived to tell the tale, and it's time to tell it to you.
Wednesday, April 25, 2007
Doctor Daze: Mondays
A week ago Monday, I did my new high-resolution lung cat scan, and breathing tests in a spaceship-looking thing, and a bunch of blood tests at the Quest Diagnostics lab.I do blood tests all the time. These were ordered by the lung doc, Dr. S, trying to figure out what's happening with that Not Pneumonia thing.
Good ol' Quest.
That's the same place that threw away 4 of the 5 biopsies taken from the extremely tender infected lymphatics in my right arm. You know. So I had to DO THEM OVER again. Those ones.
They love to pretend the blood tests will be ready in 24 hours. --Oh!-- they say --48 hours maximum.
Thursday was my appointment with the lung doc.
Monday's blood tests were NOT back yet.
grrr!
The cat scan was basically unchanged. Scars and ground glass infiltrates and such, no pneumonia. The breathing tests showed some asthma and so forth. No surprise there!
Broward General, to very mixed opinion, has a McDonald's in the hospital lobby. Me?
Between the breathing tests and the cat scan, I had a few minutes to spare. Since I'd been fasting for the breathing test - meaning I missed my morning espresso - I headed for the other Broward General Lobby option.
Starbucks!
And spent almost $5 on the same espresso I make for myself each morning. Egads.
Doesn't Cat Scan Man make it look inviting?
I brought Dr. S some articles from the Web about using oxygen to treat shortness of breath - dyspnea - even for people with good blood oxygen saturation. First off, he noticed the studies were done on hospice and lung cancer patients. Okay, but, come on. Same principle.
He'll prescribe me oxygen but we both know the insurance won't pay for it... --So what good do the articles do?-- he wants to know.
--A lot!, I say. --Now I know for sure I wasn't nuts for feeling how much that oxygen was helping me.
With prescription in hand, but no insurance willing to pay for it, I may go on a Free Oxygen Quest. That should be interesting.
At the end, Dr. S asked me, --Okay. What else can I do for you from here on out?
--Help me breathe.
So. I'm back on inhalers. After 2 years without them. One steroid inhaler, one rescue inhaler. And I can tell they really are helping.
That doc is a character and a half. Hugely great at what he does. I asked kdad to check his creds for me, and I've never seen him react that way. He was falling all over himself, impressed.
With good reason.
That doc also has a very dry delivery, and sense of humor. That's fine by me. He appears all frowny and serious, and can be a bit...harsh in his speech. So I just backtalk him right hard, and we get along. He's an intimidating guy, but I don't intimidate easy.
One visit, he asked about, ah, mucous issues. I'm a hypersecretor. So I answered, all matter-of-fact - actually sort of braggy - --Oh, I'm a snot factory!--
He was quite startled, looked up all quick. Studied me with that sharp gaze. Then he started making booger jokes.
That lung visit was last week, Thursday. I've been waiting for the bloods ever since. I really want to know if they turn up anything on aspergillus. The blood tests are far more significant to me than the cat scans or breathing tests.
This week I have three Doctor Days in a row.
I try very hard not to do that, especially now with the pollen so high. I'm most dreadfully sick with it, fatigued and dizzy and sleeping copiously. But, that's how those docs had appointments available, so there you have it.
Monday was the RA doc. And after I got home from that, I crashed. I need to sleep in the day right now to help me deal with the pollen.
Which is why I missed a phone call made at 6:34 PM.
When I woke up around midnight I had this cryptic message on my machine from the lung doc. Here, I'll transcribe it for you:
--This is Dr. S. I got back your blood work from Quest and wanted to discuss it with you thank you...HUH!!!
That last bit was his sarcastic barking laugh.
???
Was it directed at my blood tests, or just at someone in the background at his office?
AAAUUUGGGHHH!!!
He's at a different office Tuesday, away from my file, so that's probably why he didn't call back yet. And I'm sitting here ready to curl up and die from curiosity.
It's been a long time since I saw the rheumatologist. Since August. I usually hang out there every one to three months. They seemed a little hurt I hadn't been by in so long.
So I explained: Well, in October I almost lost my leg to CA MRSA, so I had to cancel that October appointment with y'all, then these wonderful bloggers got together and raised up money for a scooter and Walter came home and we scooter-shopped around Thanksgiving, which wore us both out, then he went back to work and had a heart attack and triple bypass and almost died, then he came home to get better and I was still sick recovering from the infection, so between everything I couldn't get around to doctor visits too well, then Walter went back to work, but then a few weeks ago I got an aspergillus infection or something in my lungs and couldn't breathe and spent 3 days in Holy Cross and then...
Okay, okay!
heh!
Dr. K, the RA doc, HATES Prednisone. We had our usual fight about it, and he wants to see if we can substitute CellCept for immunosuppression, so I told him, I'll try anything as long as it keeps the allergies under as much control as I can get.
Which is true.
OTOH - if it ain't broke, don't fix it. He hates steroid treatment with an unreasonable passion. He can't accept that I made an informed decision to take them, and he never will. He's tried to substitute other immunosuppressants with me before, and they did NOT help either the allergies or the arthritis, and had far worse side effects on me than the Prednisone does. I really hate wasting my time with this attitude. The reason I take it is because in every other way, he's a fabulous doctor. I've learned a great deal from him, and he helped me get my first scooter.
To Dr. K, anyone ever taking a steroid means it's broke and needs fixing. To me, here's a doc who never knew me when I spent 10 months per year mostly bedridden. THAT was broke and needed fixing.
That was not living. I would rather die than go back to that life. Most of my doctors understand this and respect my right, and my intellect, in making that decision. Dr. S does not, and Dr. K absolutely does not.
Luckily, they all defer to my infectious disease doc now. CA MRSA carries a great deal of authority. Immunosuppressants, of course, mean I'm way too susceptible to infection. So, the ID doc? She rules. And she can SEE the great value the steroids provide me.
I finally feel safer from the RA doc's anti-Prednisone predations than I ever have before.
RA was Monday.
Yesterday, Tuesday, was yet more bloodwork, fasting; then I saw the great dermatologist.
Today, Wednesday, is Ear Nose & Throat. He's a trip too, I really like him.
Then...bliss. No appointments until May 3. Well, except I'll probably want to see the ID doc. Outside of that?
I can rest.
He'll prescribe me oxygen but we both know the insurance won't pay for it... --So what good do the articles do?-- he wants to know.
--A lot!, I say. --Now I know for sure I wasn't nuts for feeling how much that oxygen was helping me.
With prescription in hand, but no insurance willing to pay for it, I may go on a Free Oxygen Quest. That should be interesting.
At the end, Dr. S asked me, --Okay. What else can I do for you from here on out?
--Help me breathe.
So. I'm back on inhalers. After 2 years without them. One steroid inhaler, one rescue inhaler. And I can tell they really are helping.
That doc is a character and a half. Hugely great at what he does. I asked kdad to check his creds for me, and I've never seen him react that way. He was falling all over himself, impressed.
With good reason.
That doc also has a very dry delivery, and sense of humor. That's fine by me. He appears all frowny and serious, and can be a bit...harsh in his speech. So I just backtalk him right hard, and we get along. He's an intimidating guy, but I don't intimidate easy.
One visit, he asked about, ah, mucous issues. I'm a hypersecretor. So I answered, all matter-of-fact - actually sort of braggy - --Oh, I'm a snot factory!--
He was quite startled, looked up all quick. Studied me with that sharp gaze. Then he started making booger jokes.
That lung visit was last week, Thursday. I've been waiting for the bloods ever since. I really want to know if they turn up anything on aspergillus. The blood tests are far more significant to me than the cat scans or breathing tests.
This week I have three Doctor Days in a row.
I try very hard not to do that, especially now with the pollen so high. I'm most dreadfully sick with it, fatigued and dizzy and sleeping copiously. But, that's how those docs had appointments available, so there you have it.
Monday was the RA doc. And after I got home from that, I crashed. I need to sleep in the day right now to help me deal with the pollen.
Which is why I missed a phone call made at 6:34 PM.
When I woke up around midnight I had this cryptic message on my machine from the lung doc. Here, I'll transcribe it for you:
--This is Dr. S. I got back your blood work from Quest and wanted to discuss it with you thank you...HUH!!!
That last bit was his sarcastic barking laugh.
???
Was it directed at my blood tests, or just at someone in the background at his office?
AAAUUUGGGHHH!!!
He's at a different office Tuesday, away from my file, so that's probably why he didn't call back yet. And I'm sitting here ready to curl up and die from curiosity.
It's been a long time since I saw the rheumatologist. Since August. I usually hang out there every one to three months. They seemed a little hurt I hadn't been by in so long.
So I explained: Well, in October I almost lost my leg to CA MRSA, so I had to cancel that October appointment with y'all, then these wonderful bloggers got together and raised up money for a scooter and Walter came home and we scooter-shopped around Thanksgiving, which wore us both out, then he went back to work and had a heart attack and triple bypass and almost died, then he came home to get better and I was still sick recovering from the infection, so between everything I couldn't get around to doctor visits too well, then Walter went back to work, but then a few weeks ago I got an aspergillus infection or something in my lungs and couldn't breathe and spent 3 days in Holy Cross and then...
Okay, okay!
heh!
Dr. K, the RA doc, HATES Prednisone. We had our usual fight about it, and he wants to see if we can substitute CellCept for immunosuppression, so I told him, I'll try anything as long as it keeps the allergies under as much control as I can get.
Which is true.
OTOH - if it ain't broke, don't fix it. He hates steroid treatment with an unreasonable passion. He can't accept that I made an informed decision to take them, and he never will. He's tried to substitute other immunosuppressants with me before, and they did NOT help either the allergies or the arthritis, and had far worse side effects on me than the Prednisone does. I really hate wasting my time with this attitude. The reason I take it is because in every other way, he's a fabulous doctor. I've learned a great deal from him, and he helped me get my first scooter.
To Dr. K, anyone ever taking a steroid means it's broke and needs fixing. To me, here's a doc who never knew me when I spent 10 months per year mostly bedridden. THAT was broke and needed fixing.
That was not living. I would rather die than go back to that life. Most of my doctors understand this and respect my right, and my intellect, in making that decision. Dr. S does not, and Dr. K absolutely does not.
Luckily, they all defer to my infectious disease doc now. CA MRSA carries a great deal of authority. Immunosuppressants, of course, mean I'm way too susceptible to infection. So, the ID doc? She rules. And she can SEE the great value the steroids provide me.
I finally feel safer from the RA doc's anti-Prednisone predations than I ever have before.
RA was Monday.
Yesterday, Tuesday, was yet more bloodwork, fasting; then I saw the great dermatologist.
Today, Wednesday, is Ear Nose & Throat. He's a trip too, I really like him.
Then...bliss. No appointments until May 3. Well, except I'll probably want to see the ID doc. Outside of that?
I can rest.
Monday, April 23, 2007
Sunday, April 22, 2007
Ghosts of Cars Past: Totally Cool Photos and Post
Granny J (Walking Prescott) was a journalist for 30 years. She hails from Jacksonville FL, and Chicago, and the desert in Arizona. Such a juxtaposition of another person's stomping grounds with my own always attracts my attention.
She knows, really knows, how to write. How to think. She sees the connectednesses of humanity and their buildings and their history, their families. Humanness.
But it's not just her writing that's so great. Her photography is absolutely exquisite.
Now add this: She's also the lucky owner of an exquisite new digital camera. One so fine, I'm hard put to subdue my covetousness.
And add this: She's an artist. Her art isn't only in her writing and her pictures. It's the eye she has for the beauty all around her, often in the so-called *ordinary* objects so many of us pass by.
She doesn't drive any more. So she walks. When you walk instead of driving, you see things.
She puts all this together in her art - her blog.
Me, I'm not a car person. I sometimes say, --I have a Missing Part in my brain, the one where other people put Car Information and Interest.
But I do love the looks of many old cars and pickup trucks.
This post of hers puts all o' that in one place.
Check it out:
http://walkingprescott.blogspot.com/2007/04/ghosts-of-cars-past_19.html
LORD that's gorgeous!
She knows, really knows, how to write. How to think. She sees the connectednesses of humanity and their buildings and their history, their families. Humanness.
But it's not just her writing that's so great. Her photography is absolutely exquisite.
Now add this: She's also the lucky owner of an exquisite new digital camera. One so fine, I'm hard put to subdue my covetousness.
And add this: She's an artist. Her art isn't only in her writing and her pictures. It's the eye she has for the beauty all around her, often in the so-called *ordinary* objects so many of us pass by.
She doesn't drive any more. So she walks. When you walk instead of driving, you see things.
She puts all this together in her art - her blog.
Me, I'm not a car person. I sometimes say, --I have a Missing Part in my brain, the one where other people put Car Information and Interest.
But I do love the looks of many old cars and pickup trucks.
This post of hers puts all o' that in one place.
Check it out:
http://walkingprescott.blogspot.com/2007/04/ghosts-of-cars-past_19.html
LORD that's gorgeous!
Friday, April 20, 2007
Make That Garden GROW!
Here I was, thinking about turning lemons to lemonade, and wondering in the recesses of my mind about other metaphors for such. I used the one I hear the most, and finished the thought.
Fellow gardener and scooteree, Nancy, has a wonderfully dry and piercing sense of humor. She left this comment, which made me inordinately proud of myself. Oh, smug smug smug!
See, K.... what I like about you is that you take the shit life gives you and then you turn it into fertilizer and then you grow pretty flowers in it....
BWAHAHAHAHAHAHA!!!!!!!!!!!!
This is a high compliment indeed. Thank you, Nancy! I'm sitting here grinning and blushing all at the same time.
And it's actually right on target. I mean, I like lemonade too. Sure. But this is a far more productive and fun way to do the same job:
--Hey, cool, what's this? Eeewww! Volunteer Crap. ha! like I need any more, already gotta use my hip boots around here, hee hee! Wait a minnit. I bet I could use this, actually. And hey, it's FREE! Free is good. Hell, why not. I'm broke. Okay, let's put it over here and just let the sun and the rain do their job...Oh, look, it's already ready! GREAT! Hey, I can just put that right over here...Oh pretty pretty! I really shouldn't spent $2.99 on a flower, but come on, it's worth at least $10 worth of Prozac and Xanax, isn't it? and look how much money I already saved in fertilizer! Okay. A little Garden Retail Therapy. Why not. Life's too short, enjoy your flowers while you can still see them and smell them, right?...
Fellow gardener and scooteree, Nancy, has a wonderfully dry and piercing sense of humor. She left this comment, which made me inordinately proud of myself. Oh, smug smug smug!
See, K.... what I like about you is that you take the shit life gives you and then you turn it into fertilizer and then you grow pretty flowers in it....
BWAHAHAHAHAHAHA!!!!!!!!!!!!
This is a high compliment indeed. Thank you, Nancy! I'm sitting here grinning and blushing all at the same time.
And it's actually right on target. I mean, I like lemonade too. Sure. But this is a far more productive and fun way to do the same job:
--Hey, cool, what's this? Eeewww! Volunteer Crap. ha! like I need any more, already gotta use my hip boots around here, hee hee! Wait a minnit. I bet I could use this, actually. And hey, it's FREE! Free is good. Hell, why not. I'm broke. Okay, let's put it over here and just let the sun and the rain do their job...Oh, look, it's already ready! GREAT! Hey, I can just put that right over here...Oh pretty pretty! I really shouldn't spent $2.99 on a flower, but come on, it's worth at least $10 worth of Prozac and Xanax, isn't it? and look how much money I already saved in fertilizer! Okay. A little Garden Retail Therapy. Why not. Life's too short, enjoy your flowers while you can still see them and smell them, right?...
Wednesday, April 18, 2007
Awwwww, MUUUUSH.
And I thought **I** was bad!
Dry your eyes, everyone. Too much cryin' goin' on around here.
Actually, I was going to post that pic for Livey several weeks ago. She was caught in a really bad winter snowstorn, completely stuck inside her house like there was a hurricane outside, with a sudden dread realization: that right when she thought she was Totally Prepared to be snowed in, she'd actually just run out of...
Toilet Paper!
Yes indeed.
This is a true difficulty.
And under the circumstances, I just didn't have the heart to post that pic. Not when her dilemma was still, oh, current. Even if she did have lots of kleenex. Even if I was Real Proud of how I never run out of TP.
But now?
It's springtime, she's long been free of that snowstorm and full of spring fever, and she got her TP all stocked up again. So now it's safe for me to rub it in. hee hee! Thank you, woman, for such an excellent photo op.
Okay.
I'm...
I'm floored, and flattered, and a bit discombobulated at the response to that *It's Simple* post.
Thank you all. For your comments, and posts, and links direct and indirect, blogrolling, and nomination for a Thinking Blogger award based on one whole post. I really mean it.
I don't quite understand it but I'm trying to.
My life has taken a number of very strange turns. That *nightmare memories* reference in my profile? It's there for a reason.
From the very beginning of this blog, I knew I'd want to address some of that, somewhat. But how, and how much, and when, I wasn't sure. I figured time would tell me.
In the context of a post over at Pretty Lady's, it was brought up again in my mind. That woman has a brain on her that will not quit. Serious business.
Yet, like me, she's gotten into some unhealthy relationships. So I wanted to let her know she was most assuredly not the only one. In fact, it looked to me like she was right on an age-appropriate track for that time-honored tradition of having codependent relationships, then reaching our limit and saying, No more!, and learning the detection and enforcement skills to accomplish it. Smarts don't always keep us out of situations like that, especially when we're younger. Hearts and minds don't always cooperate with each other.
I was glad I said what I did. She seemed to feel better, yay! And on my part, I realized that those particular memories - the summer of 1991, and the subsequent 1992 version of my series of bad health episodes - had much less power to wound me than they used to.
They aren't the only set of nightmare memories I have. Nor are they the worst. But they are a part of the whole, and I feel better for addressing them here in the 'sphere.
One thing I'd rather not do is visit my nightmares on others. It's not helpful to me if they hurt people I care about, and I know for a fact that I have a much higher tolerance for pain of all kinds - including the shock of blood and gore and fear, of emotional and physical pain - than some other people do. We're all made differently that way.
So I didn't put in the details, nor even some of the most important awful events.
Yet it seemed enough to make some people think about different aspects of rough situations, of addressing life's challenges. Of looking for, and finding, the strength and the good we have inside us and in our lives, in the people around us. And that made me very happy indeed.
You see, if I have any overriding goal, both as a blogger and a person living a life that took turns way beyond my control, turns that kicked it away from the goals I'd envisioned in my youth - the one thing I'd like most to do is, I just want to help people think.
I don't, however, believe I'm all that unusual as a survivor. My feeling is and always has been that most folks, given the same circumstances, also would have made it through what I did. No doubt in my mind. I am surrounded by survivors. That was my point.
Walter doesn't entirely agree with me on this. His view of humanity overall is not quite as positive as mine. Is either one of us right, or wrong? To me, this sort of thing falls into the category of Unknowable. Good to think on, not so good to think you know the One Single Answer to.
Answers don't always come that way.
I'm a little concerned that as I continue to post, and you continue to read, you'll begin to see my weaknesses more clearly and get irritated with them. They're most certainly there. For example, like many folks, more than a few of my problems in life are of my own making.
And I've gotten to the point where I don't think we should beat ourselves up over that. Acknowledge it, take that personal responsibility, yes. Learn, grow, move on. There are those who feel...ripped off, if they don't get to witness more self-flagellation than I'm willing to commit.
It's also true that a strong tendency to make lemonade from one's lemons can get on people's nerves as well. I've run across that more than once.
I understand these human traits, and they don't much trouble me. We are none of us perfect, which is good, because if other people were, then I would be in some really serious embarrassment.
So, again, thank you all. Very much. Whether I agree with it or fully understand it or no, you have honored me. As time goes by I hope I won't let you down.
And I hope y'all like pretty flower pix too.
Monday, April 16, 2007
A Conversation With Walter As He Drives Through the Desert
We talk on our (unlimited cell to cell) cell phones all the time. Sometimes it's a two-word conversation, sometimes two hours, often 10 or 20 times a day. We're apart so much of the time, but I bet we communicate more than lots of married people who live together full time. Sometimes I grab my keyboard and start writing it down.
Walter's driving to California. He waved Hi! to Desert Cat in Tucson. Then 60 miles later he had to stop and put in a bunch of power steering fluid. He'd had the power steering repaired in Ft. Lauderdale. This was great because it was done over the weekend, which saved him $10 per day for 4 days in truck parking fees at the truck stop. But now here he was, only as far as New Mexico, and it was already acting up again. Shaking the steering out of his hands in the mountains in high high winds, eeek!
Later he called again to tell me he'd been singing as he drove, and suddenly realized all these songs he sang were from the 1930's, which surprised him.
Then he started singing to me.
He has a beautiful singing voice. Just beautiful. Oddly, at the same time, he's pretty tone-deaf. Can't carry a tune sometimes. But he did well tonight.
Apparently the automatic transmission has something to do with all this.
With the singing as he drives business, I mean. He said, --My mind can go because I don't have to worry about shifting the gears at all.
--When we were kids and went out dancing there was no alcohol in the discos, we'd dance our hearts out all night then we'd hit the wine cellar somewhere. We were thirsty! And the Hungarian violinists would be there, and they'd play these old songs for us as we drank our wine. They'd play all night if you had some money for them. And the funny thing is we thought of it as folk music, but now that I think about it, every song was professionally written, very good music, for some reason it was all from the 30's...
He finished a snatch of one song in his rich sweet voice. Then he said, --Oh wait, here's another one. Wait a minute, I have to think, that was Hungarian, now this one's a tango in Slovak...and sings again.
This makes me grin, partly to contemplate a tango in Slovak, partly because to change languages he has to shift gears in his mind.
See, linguist or no, he can only do one language at a time. For the next song he needs to stop and turn his mental switch from Hungarian to Slovak. I love languages too but it's different for me, I can mentally translate the whole sense of a piece, rather than just transliterate, then translate a word or phrase as you go.
You have to truly instantly translate only when you interpret sign language. Essentially that's the only translation in the world where you're speaking two different languages simultaneously, following different grammar rules and everything: say, English out your mouth, and ASL with your hands. Hands and face and body, of course, hands and *expression* I mean.
Walter says he's coming to Yuma now. The automatic transmission is taking him up and down the mountains and just shifted from 18th to 17th gear, nice and smooth.
He says, --People think Hungarian is not romantic but they're wrong! Here, I'll translate this one for you:
I'm sending my heart to convey my love to you
I kiss my soul onto the velvet of your hand
When I can't find the words then my heart will talk to yours...
--and I wish I knew how it goes from there but I can't remember a single word more, it's like a black hole in my memory. Isn't that a romantic song?
--Oh, and I just remembered another one in Slovak! I only can sing in 3 languages - Hungarian, Slovak and Czech. No German. Oh wait!, I know one in Russian too, only one song though. Russian National Anthem-- and he sings a few lines for me again.
--Did you like that one?
--Hard not to like Russian songs!-- I tell him.
--Oh yes, I just love the Red Army Orchestra!-- he says. I remember several years ago when he played one of their CDs for a while. It was really something.
--So did you like that first song?-- he asks me --The one about the velvet hands?
--Very much.
--Oh, I think of it all the time because I think of you. And your hands. I like your hands. And I really like your skin, your skin on your hands. I think about it all the time.
Walter's driving to California. He waved Hi! to Desert Cat in Tucson. Then 60 miles later he had to stop and put in a bunch of power steering fluid. He'd had the power steering repaired in Ft. Lauderdale. This was great because it was done over the weekend, which saved him $10 per day for 4 days in truck parking fees at the truck stop. But now here he was, only as far as New Mexico, and it was already acting up again. Shaking the steering out of his hands in the mountains in high high winds, eeek!
Later he called again to tell me he'd been singing as he drove, and suddenly realized all these songs he sang were from the 1930's, which surprised him.
Then he started singing to me.
He has a beautiful singing voice. Just beautiful. Oddly, at the same time, he's pretty tone-deaf. Can't carry a tune sometimes. But he did well tonight.
Apparently the automatic transmission has something to do with all this.
With the singing as he drives business, I mean. He said, --My mind can go because I don't have to worry about shifting the gears at all.
--When we were kids and went out dancing there was no alcohol in the discos, we'd dance our hearts out all night then we'd hit the wine cellar somewhere. We were thirsty! And the Hungarian violinists would be there, and they'd play these old songs for us as we drank our wine. They'd play all night if you had some money for them. And the funny thing is we thought of it as folk music, but now that I think about it, every song was professionally written, very good music, for some reason it was all from the 30's...
He finished a snatch of one song in his rich sweet voice. Then he said, --Oh wait, here's another one. Wait a minute, I have to think, that was Hungarian, now this one's a tango in Slovak...and sings again.
This makes me grin, partly to contemplate a tango in Slovak, partly because to change languages he has to shift gears in his mind.
See, linguist or no, he can only do one language at a time. For the next song he needs to stop and turn his mental switch from Hungarian to Slovak. I love languages too but it's different for me, I can mentally translate the whole sense of a piece, rather than just transliterate, then translate a word or phrase as you go.
You have to truly instantly translate only when you interpret sign language. Essentially that's the only translation in the world where you're speaking two different languages simultaneously, following different grammar rules and everything: say, English out your mouth, and ASL with your hands. Hands and face and body, of course, hands and *expression* I mean.
Walter says he's coming to Yuma now. The automatic transmission is taking him up and down the mountains and just shifted from 18th to 17th gear, nice and smooth.
He says, --People think Hungarian is not romantic but they're wrong! Here, I'll translate this one for you:
I'm sending my heart to convey my love to you
I kiss my soul onto the velvet of your hand
When I can't find the words then my heart will talk to yours...
--and I wish I knew how it goes from there but I can't remember a single word more, it's like a black hole in my memory. Isn't that a romantic song?
--Oh, and I just remembered another one in Slovak! I only can sing in 3 languages - Hungarian, Slovak and Czech. No German. Oh wait!, I know one in Russian too, only one song though. Russian National Anthem-- and he sings a few lines for me again.
--Did you like that one?
--Hard not to like Russian songs!-- I tell him.
--Oh yes, I just love the Red Army Orchestra!-- he says. I remember several years ago when he played one of their CDs for a while. It was really something.
--So did you like that first song?-- he asks me --The one about the velvet hands?
--Very much.
--Oh, I think of it all the time because I think of you. And your hands. I like your hands. And I really like your skin, your skin on your hands. I think about it all the time.
Saturday, April 14, 2007
It's Simple. It's Not Easy, But It's Simple.
When I returned to Florida from NW Louisiana in 1991, I was shellshocked and desperately ill. I'd just lost my profession, my career, everything I'd worked so hard for, going to college when I was 25 and graduating in only two years with my high-grade degree.
I junked my car for $100 and couldn't replace it; it had died. My fiance almost did, and might as well have; it turned out he was living a phony life, he wasn't who he said he was. I accidentally discovered this by going through his personal papers while boxing up his possessions to return to his mother, since the doctors told me he wouldn't survive. That entire summer of 1991, just before my return here, was packed full of horrors and losses on a terrible scale.
Finally, in August, I'd come back on a Florida visit to help care for my grandmother, dying from lung cancer. She passed away a few days after I got here. I noticed that my allergies, which had become absolutely debilitating in NW Louisiana, were sort of tolerable here. My doc said it wouldn't last more than 6 months to 2 years, and then they might ratchet up even worse. I was already supposed to be dead from them, so *far worse* didn't sound good.
I told him I really needed to get out of there, and that even a small amount of healthier time would be worth it.
It was.
It lasted 8 months. When it was over, the resurgence of the constant semi-anaphylactic condition I lived in was extraordinary. It was dramatic and scary, horribly sickening, and I dealt with it when I was completely alone, without financial resources, and too sick to simply care for my two cats and my orchids, much less a person who was seriously ill.
I went through a sort of hurricane-prep whirl of activity and then shut myself inside in the most controlled-air environment I could achieve on my limited means. Back inside my bubble I went, and sealed the door.
And then I physically collapsed.
I still wonder at myself, at how I was even able to do what I did to prepare. I can only surmise that it's like when a 100 pound mother gets a surge of adrenalin and lifts up the car that just rolled onto her child.
Massive doses of steroids are part of what saved my life; and of course, also part of what sickened me so. The complex biochemistry of the allergic attacks, coupled with my autoimmune rheumatoid arthritis, undiagnosed hypothryroid, handfuls of steroids and other meds, and the lingering PTSD from that bloody, deadly summer in Louisiana had me half crazy.
I slept around 18 hours per day. Often I couldn't speak. My mind was intact but like many in a serious allergic state, I had trouble making the thoughts come out of my mouth in words. And that was when I even had a voice: I have dysphonia, vocal cord dysfunction, and often lost my voice entirely for days or weeks at a time.
So I slept, and I thought.
I'd lost everything. My health, my career, my fiance, almost all of my possessions. My health insurance. There was no telling if I'd get any better, or by how much. Me, suffused with restless wanderlust, who'd moved 35 times in a 10 year period - I was now a permanent shut-in.
The overall physical pain wasn't as bad then as now. But the overwhelming sense of sickness was even worse than today. Dizziness too; one of my few ventures out of my apartment had me falling, backwards, down the stairs. My heart was doing strange things. No matter how short I cut my nails, the bouts of itching left me bloody from head to toe, especially when I slept.
I got bronchitis, badly, and I was already allergic to several antibiotics. My allergist/internist would listen to my lungs and shake his head, and he said:
--The infection has settled around your old pneumonia scars. Both lungs. It hasn't clotted yet, it's not pneumonia yet, but it's only a hairsbreadth away. Better get ready.
Oh, I was sick. Fevers and chills, and that stabbing pain in the lungs. Rattling wheezing gasping coughing choking nauseating breath.
I was so tired.
I was so very tired, and my soul was sick and I was heartbroken and devastated and I slept and thought and slept and thought and I didn't seem able to figure out a reason to live.
It was more than just, --What meaningful future could I possibly have?
It was this: --Who needed me to stay alive?
There was no one who couldn't easily do without me.
My family, especially back then, was not particularly close in the way many are about health needs at least. They helped me financially, for which I'll always be grateful, but they completely failed to understand or take much interest in what was happening to me. The now brain-damaged shell of a human that I'd briefly thought I would marry was no longer stalking me; that was good; but certainly any hope of a relationship there would have been a sickness of its own. My friends, including many fine people I'd left behind in Louisiana, were all scattered far and wide; none were in South Florida. My wonderful grandmother Jean, who'd lived two blocks away from my new Florida apartment, was dead.
I knew that I was so sick that dying would be easy. Relatively painless, even, considering how I already felt. I was so close to double pneumonia, the bronchitis wasn't responding much to the antibiotics, and I was reeling from the medications and the relentless battering of biochemicals released from a constant state of near-anaphylactic shock.
I didn't need to commit suicide, you see. All I had to do was give up. Call it over, throw in the towel, go to sleep again and just...stay that way. It tempted me, it pulled at me the way frigid cold calls out to a lost wanderer to just lie down, it's not cold, really it feels warm if you lie down in the snow, go to sleep, go to sleep...
The two beings who saved my life were not humans. They were my two cats.
I'd thought about them. Of course. But I knew my family would, at least, find them a home with people who loved them and were good to them.
The difference was this: No matter how good those new people might be, they wouldn't be the same. They wouldn't love my cats the same way I did. The cats would always remember me and wonder, as animals do, why I went away and didn't come back for them.
They might be perfectly happy after a time, but it would not be the same. I loved them in my own way, I slept with them and held hands and sang them songs and played with them, and they knew how much I loved them. We were so extremely bonded, people would joke about them being my familiars.
Trivial? Silly? Childish?
No.
It was enough. It was enough to make me decide to live, to keep on going. To fight again.
So I did.
And I won.
And my life is incredibly different now. Even the optimist that I am - and I certainly am - I couldn't have hoped for it to turn around as much as it did. To just be able to buy a house, when you're permanently disabled and living on the tiny income from Social Security? But I'd met Walter - a miracle, how in the world does a shut-in meet anyone, much less the husband I couldn't find in 20 years of searching? And it took both our incomes to buy the house. I actually mattered financially to our little family of two humans and two cats.
I say all this to you now because of a comment left by Snog Dot on my *not pneumonia* post. He said:
I just don't know how you keep going.
How?
Simple.
Because of people like you.
You kept going while the love of your life, who you'd finally found after looking for such a long time, slowly died, and you cared for her and loved her every minute. You keep going today, being a great dad for your kids, while your heart must be torn in two and your soul exhausted.
My blog sis Livey not only survived a violent, vicious childhood, but cancer and a list of maladies that goes side-by-side with mine. Her progress through the mental and physical damage she sustained is just breathtaking, it's like watching the sun make rainbows toward the end of the storm.
pepektheassassin survived cancer too. That's what her book, Chrysalis, is about. Her husband, the only man she ever said *I love you* to, has seven stents in his heart. Seven. She was there for him, as he was for her, and they both made it through. Yet the grace and beauty and pure fun of her writing makes me forget her hardships all the time.
Walrilla recently lost his foot to infection. And the other leg's infected too, has been for a year. I know he's had a lot to grapple with, but my God, it's hard to see it. He's strong and brave and cheerful and sweet and fierce looking as always, and he works through the bad patches with a quiet will. He's so excited about the upcoming blogmeet I bet it's curling his goatee.
Jean lost her husband to suicide. There's often an element of spite in a suicide, where they want to inflict as much emotional agony on the survivor as they can. I don't know the circumstances surrounding this one, but I do know it hurt her badly. Yet she won't give up hope. She wraps us up in her poetry and prose and I hope, one day, to see her glass art too.
Nancy has spinal stenosis and more, and after surgery to correct it, now they tell her there's nothing more they can do. That's not easy to hear. She can't be a teacher any more, and that woman was born to be a teacher, it's in her from head to toe. Lord, just look at her garden. It's lovely. I have to sit down to garden, to weed and such. She has to LIE down. And so she does, and loves her time out there.
Desert Cat, my brilliant and beloved blogdad, has had troubles of his own. Many of them arise from being born with what looks like a mild, but undiagnosed and therefore not treated and not understood, case of Asperger's. Couple that with his powerful brain and the viciousness of children, and of adults who sometimes call genius stupidity - as they did with his father too - and you've got a childhood that's terribly painful. It affects a person forever. And here he is today, successful and achieving, and loving his God with a rare and striking purity, one that brought him back around to forgiving and loving his fellow humans.
Pretty Lady, Granny J, Cindi, Sassy Sistah, John McCann, KessKennis, Little Miss Attila, Kirsten Namskau, Bane, LL, Catfish, Mickysolo, Misty, oh the list goes on and on, I have to stop.
These are just a few of the ones who instantly spring to my mind, Snog Dot. Just a few.
I don't mean we never react badly to our hardships. We don't suffer by choice, and I bet most or all of us have shared these: depression, anger, fear, despair, denial, greed, anxiety, tears, self-pity, guilt, selfishness, unreasonableness, spitefulness. And that little thing called self-medicating. We are human and we're going to feel those human feelings and do those human things. It's not that we're immune to the less admirable side of life. The thing is, we go on, we come back up. We go to work on it and we make it through.
I think of the people I visit in the blogosphere and every single one I love the best has had some real trouble in their lives. I don't go along with the *comparative suffering* school of thought; any suffering is hard on people. None of these I mentioned, their experiences that I know about - meaning there's often far worse I don't know about - none of these are small. None are *minor.* All of them have experienced not just one isolated trouble, but a stream of it.
They didn't just make it through. They went way beyond. They are bloggers now and their writing and photos, their art - yes, of course it's art - shines with the beauty of the strength in their souls, the love of life that they kept intact throughout. They reach across the 'net, hands reaching out to me, hearts open, full of prayers and good thoughts and patient listening and kindness and comments. That's who I want to be like.
It still shocks me that people ever read my blog. It can't be easy sometimes. There are some difficult things here, hard to look at, hard to read. I love my life, but I need this blogtherapy too and here's where I let it out, the awful goes side by side with the flower pix.
Not long ago, there was an act - here in this tiny corner of the 'sphere - of such huge, such awesome gracefulness, that I still can't quite get my mind around it. When I almost lost my leg from walking too much, because my Medicare HMO wouldn't replace their defective scooter, these bloggers not only looked at the ugly photos of that leg, they got together in a whirlwind and raised so much money so fast that I could go and buy one of my own. My very own, that no one can ever take away from me again.
They were brave, too. They knew I would not want to allow this, and were ready to buy one on the sly and drop it on my doorstep so I couldn't say, *No.* If I hadn't been so close to losing my leg, or my life, from that infection, I would certainly have refused. Instead...they gave me back a great measure of safety, an incredible increase in my ability to get out and about, together with a gentle lesson in the art of accepting help. That's very hard for me to do and I need to learn how.
So much for cyber constructs. There are humans behind these constructs, every one, and these ones are beautiful humans indeed.
And I have my Walter now. That miracle of meeting him has lasted for 14 years, more miracles keeping us together and keeping us both alive. I watch him, too, who's had his share of hardships and tragic losses, and is more patient and calm today than he's ever been in his life.
Instead - you see - instead of the other way around.
So. Easy answer, Jack. My worst is long over. How do I keep on going now? Simple.
Because of you.
I junked my car for $100 and couldn't replace it; it had died. My fiance almost did, and might as well have; it turned out he was living a phony life, he wasn't who he said he was. I accidentally discovered this by going through his personal papers while boxing up his possessions to return to his mother, since the doctors told me he wouldn't survive. That entire summer of 1991, just before my return here, was packed full of horrors and losses on a terrible scale.
Finally, in August, I'd come back on a Florida visit to help care for my grandmother, dying from lung cancer. She passed away a few days after I got here. I noticed that my allergies, which had become absolutely debilitating in NW Louisiana, were sort of tolerable here. My doc said it wouldn't last more than 6 months to 2 years, and then they might ratchet up even worse. I was already supposed to be dead from them, so *far worse* didn't sound good.
I told him I really needed to get out of there, and that even a small amount of healthier time would be worth it.
It was.
It lasted 8 months. When it was over, the resurgence of the constant semi-anaphylactic condition I lived in was extraordinary. It was dramatic and scary, horribly sickening, and I dealt with it when I was completely alone, without financial resources, and too sick to simply care for my two cats and my orchids, much less a person who was seriously ill.
I went through a sort of hurricane-prep whirl of activity and then shut myself inside in the most controlled-air environment I could achieve on my limited means. Back inside my bubble I went, and sealed the door.
And then I physically collapsed.
I still wonder at myself, at how I was even able to do what I did to prepare. I can only surmise that it's like when a 100 pound mother gets a surge of adrenalin and lifts up the car that just rolled onto her child.
Massive doses of steroids are part of what saved my life; and of course, also part of what sickened me so. The complex biochemistry of the allergic attacks, coupled with my autoimmune rheumatoid arthritis, undiagnosed hypothryroid, handfuls of steroids and other meds, and the lingering PTSD from that bloody, deadly summer in Louisiana had me half crazy.
I slept around 18 hours per day. Often I couldn't speak. My mind was intact but like many in a serious allergic state, I had trouble making the thoughts come out of my mouth in words. And that was when I even had a voice: I have dysphonia, vocal cord dysfunction, and often lost my voice entirely for days or weeks at a time.
So I slept, and I thought.
I'd lost everything. My health, my career, my fiance, almost all of my possessions. My health insurance. There was no telling if I'd get any better, or by how much. Me, suffused with restless wanderlust, who'd moved 35 times in a 10 year period - I was now a permanent shut-in.
The overall physical pain wasn't as bad then as now. But the overwhelming sense of sickness was even worse than today. Dizziness too; one of my few ventures out of my apartment had me falling, backwards, down the stairs. My heart was doing strange things. No matter how short I cut my nails, the bouts of itching left me bloody from head to toe, especially when I slept.
I got bronchitis, badly, and I was already allergic to several antibiotics. My allergist/internist would listen to my lungs and shake his head, and he said:
--The infection has settled around your old pneumonia scars. Both lungs. It hasn't clotted yet, it's not pneumonia yet, but it's only a hairsbreadth away. Better get ready.
Oh, I was sick. Fevers and chills, and that stabbing pain in the lungs. Rattling wheezing gasping coughing choking nauseating breath.
I was so tired.
I was so very tired, and my soul was sick and I was heartbroken and devastated and I slept and thought and slept and thought and I didn't seem able to figure out a reason to live.
It was more than just, --What meaningful future could I possibly have?
It was this: --Who needed me to stay alive?
There was no one who couldn't easily do without me.
My family, especially back then, was not particularly close in the way many are about health needs at least. They helped me financially, for which I'll always be grateful, but they completely failed to understand or take much interest in what was happening to me. The now brain-damaged shell of a human that I'd briefly thought I would marry was no longer stalking me; that was good; but certainly any hope of a relationship there would have been a sickness of its own. My friends, including many fine people I'd left behind in Louisiana, were all scattered far and wide; none were in South Florida. My wonderful grandmother Jean, who'd lived two blocks away from my new Florida apartment, was dead.
I knew that I was so sick that dying would be easy. Relatively painless, even, considering how I already felt. I was so close to double pneumonia, the bronchitis wasn't responding much to the antibiotics, and I was reeling from the medications and the relentless battering of biochemicals released from a constant state of near-anaphylactic shock.
I didn't need to commit suicide, you see. All I had to do was give up. Call it over, throw in the towel, go to sleep again and just...stay that way. It tempted me, it pulled at me the way frigid cold calls out to a lost wanderer to just lie down, it's not cold, really it feels warm if you lie down in the snow, go to sleep, go to sleep...
The two beings who saved my life were not humans. They were my two cats.
I'd thought about them. Of course. But I knew my family would, at least, find them a home with people who loved them and were good to them.
The difference was this: No matter how good those new people might be, they wouldn't be the same. They wouldn't love my cats the same way I did. The cats would always remember me and wonder, as animals do, why I went away and didn't come back for them.
They might be perfectly happy after a time, but it would not be the same. I loved them in my own way, I slept with them and held hands and sang them songs and played with them, and they knew how much I loved them. We were so extremely bonded, people would joke about them being my familiars.
Trivial? Silly? Childish?
No.
It was enough. It was enough to make me decide to live, to keep on going. To fight again.
So I did.
And I won.
And my life is incredibly different now. Even the optimist that I am - and I certainly am - I couldn't have hoped for it to turn around as much as it did. To just be able to buy a house, when you're permanently disabled and living on the tiny income from Social Security? But I'd met Walter - a miracle, how in the world does a shut-in meet anyone, much less the husband I couldn't find in 20 years of searching? And it took both our incomes to buy the house. I actually mattered financially to our little family of two humans and two cats.
I say all this to you now because of a comment left by Snog Dot on my *not pneumonia* post. He said:
I just don't know how you keep going.
How?
Simple.
Because of people like you.
You kept going while the love of your life, who you'd finally found after looking for such a long time, slowly died, and you cared for her and loved her every minute. You keep going today, being a great dad for your kids, while your heart must be torn in two and your soul exhausted.
My blog sis Livey not only survived a violent, vicious childhood, but cancer and a list of maladies that goes side-by-side with mine. Her progress through the mental and physical damage she sustained is just breathtaking, it's like watching the sun make rainbows toward the end of the storm.
pepektheassassin survived cancer too. That's what her book, Chrysalis, is about. Her husband, the only man she ever said *I love you* to, has seven stents in his heart. Seven. She was there for him, as he was for her, and they both made it through. Yet the grace and beauty and pure fun of her writing makes me forget her hardships all the time.
Walrilla recently lost his foot to infection. And the other leg's infected too, has been for a year. I know he's had a lot to grapple with, but my God, it's hard to see it. He's strong and brave and cheerful and sweet and fierce looking as always, and he works through the bad patches with a quiet will. He's so excited about the upcoming blogmeet I bet it's curling his goatee.
Jean lost her husband to suicide. There's often an element of spite in a suicide, where they want to inflict as much emotional agony on the survivor as they can. I don't know the circumstances surrounding this one, but I do know it hurt her badly. Yet she won't give up hope. She wraps us up in her poetry and prose and I hope, one day, to see her glass art too.
Nancy has spinal stenosis and more, and after surgery to correct it, now they tell her there's nothing more they can do. That's not easy to hear. She can't be a teacher any more, and that woman was born to be a teacher, it's in her from head to toe. Lord, just look at her garden. It's lovely. I have to sit down to garden, to weed and such. She has to LIE down. And so she does, and loves her time out there.
Desert Cat, my brilliant and beloved blogdad, has had troubles of his own. Many of them arise from being born with what looks like a mild, but undiagnosed and therefore not treated and not understood, case of Asperger's. Couple that with his powerful brain and the viciousness of children, and of adults who sometimes call genius stupidity - as they did with his father too - and you've got a childhood that's terribly painful. It affects a person forever. And here he is today, successful and achieving, and loving his God with a rare and striking purity, one that brought him back around to forgiving and loving his fellow humans.
Pretty Lady, Granny J, Cindi, Sassy Sistah, John McCann, KessKennis, Little Miss Attila, Kirsten Namskau, Bane, LL, Catfish, Mickysolo, Misty, oh the list goes on and on, I have to stop.
These are just a few of the ones who instantly spring to my mind, Snog Dot. Just a few.
I don't mean we never react badly to our hardships. We don't suffer by choice, and I bet most or all of us have shared these: depression, anger, fear, despair, denial, greed, anxiety, tears, self-pity, guilt, selfishness, unreasonableness, spitefulness. And that little thing called self-medicating. We are human and we're going to feel those human feelings and do those human things. It's not that we're immune to the less admirable side of life. The thing is, we go on, we come back up. We go to work on it and we make it through.
I think of the people I visit in the blogosphere and every single one I love the best has had some real trouble in their lives. I don't go along with the *comparative suffering* school of thought; any suffering is hard on people. None of these I mentioned, their experiences that I know about - meaning there's often far worse I don't know about - none of these are small. None are *minor.* All of them have experienced not just one isolated trouble, but a stream of it.
They didn't just make it through. They went way beyond. They are bloggers now and their writing and photos, their art - yes, of course it's art - shines with the beauty of the strength in their souls, the love of life that they kept intact throughout. They reach across the 'net, hands reaching out to me, hearts open, full of prayers and good thoughts and patient listening and kindness and comments. That's who I want to be like.
It still shocks me that people ever read my blog. It can't be easy sometimes. There are some difficult things here, hard to look at, hard to read. I love my life, but I need this blogtherapy too and here's where I let it out, the awful goes side by side with the flower pix.
Not long ago, there was an act - here in this tiny corner of the 'sphere - of such huge, such awesome gracefulness, that I still can't quite get my mind around it. When I almost lost my leg from walking too much, because my Medicare HMO wouldn't replace their defective scooter, these bloggers not only looked at the ugly photos of that leg, they got together in a whirlwind and raised so much money so fast that I could go and buy one of my own. My very own, that no one can ever take away from me again.
They were brave, too. They knew I would not want to allow this, and were ready to buy one on the sly and drop it on my doorstep so I couldn't say, *No.* If I hadn't been so close to losing my leg, or my life, from that infection, I would certainly have refused. Instead...they gave me back a great measure of safety, an incredible increase in my ability to get out and about, together with a gentle lesson in the art of accepting help. That's very hard for me to do and I need to learn how.
So much for cyber constructs. There are humans behind these constructs, every one, and these ones are beautiful humans indeed.
And I have my Walter now. That miracle of meeting him has lasted for 14 years, more miracles keeping us together and keeping us both alive. I watch him, too, who's had his share of hardships and tragic losses, and is more patient and calm today than he's ever been in his life.
Instead - you see - instead of the other way around.
So. Easy answer, Jack. My worst is long over. How do I keep on going now? Simple.
Because of you.
Friday, April 13, 2007
Happy Friday the 13th!
I may not have even noticed if it weren't for Cindi.
She, of course, being an eminently sensible woman, sees some good luck in this day.
Me too.
My mother was born on Friday the 13th. July.
One fine day, Walter and I were scheduled to go to a certain Real Estate closing. The only one of my very own in my entire life. Oh, happy day! My own house. My very own.
And we'd waited pretty patiently for it. Gave the seller 2 months to close, because he wanted to buy a condo first, and because he was pretty irresponsible and lazy and didn't take care of business too well. For example, he was 45 minutes late to the closing. Where I come from that's a pretty serious breach, there.
As we waited out our 2 months, Walter noticed something. We were scheduled to close on a Friday. Friday the 13th.
He's a brilliant and highly educated man. But he has traces of old country ways about him, and sometimes a little superstition is one.
He objected to this closing date.
I, OTOH, did NOT want to delay it. No. Not by one single minute. It would be like postponing a wedding or something. You just DON'T, not if you can help it.
I asked him, --Why?
--Well. I mean I know it's just superstition. But...why take chances?...
I gave him The Look.
All spice know The Look. I hear, from the Guy side, that it's usually the province of the Chick spouse.
I told him, --Actually, Friday the 13th is your LUCKY day.
---Huh??? he replied.
--Yes. See, my mom was born on Friday the 13th.
--Ummm...So?
--If she hadn't been born, I wouldn't have been born. And you'd never have met me.
That makes Friday the 13th your lucky day. We won't change the date for the closing. Why throw away our lucky day?
And close on Friday the 13th, we did.
She, of course, being an eminently sensible woman, sees some good luck in this day.
Me too.
My mother was born on Friday the 13th. July.
One fine day, Walter and I were scheduled to go to a certain Real Estate closing. The only one of my very own in my entire life. Oh, happy day! My own house. My very own.
And we'd waited pretty patiently for it. Gave the seller 2 months to close, because he wanted to buy a condo first, and because he was pretty irresponsible and lazy and didn't take care of business too well. For example, he was 45 minutes late to the closing. Where I come from that's a pretty serious breach, there.
As we waited out our 2 months, Walter noticed something. We were scheduled to close on a Friday. Friday the 13th.
He's a brilliant and highly educated man. But he has traces of old country ways about him, and sometimes a little superstition is one.
He objected to this closing date.
I, OTOH, did NOT want to delay it. No. Not by one single minute. It would be like postponing a wedding or something. You just DON'T, not if you can help it.
I asked him, --Why?
--Well. I mean I know it's just superstition. But...why take chances?...
I gave him The Look.
All spice know The Look. I hear, from the Guy side, that it's usually the province of the Chick spouse.
I told him, --Actually, Friday the 13th is your LUCKY day.
---Huh??? he replied.
--Yes. See, my mom was born on Friday the 13th.
--Ummm...So?
--If she hadn't been born, I wouldn't have been born. And you'd never have met me.
That makes Friday the 13th your lucky day. We won't change the date for the closing. Why throw away our lucky day?
And close on Friday the 13th, we did.
Thursday, April 12, 2007
Sometimes, *Not Pneumonia* Is Not Good News
Sorry, smokers. Hey. He's a lung doc. What can we expect? I mean, this is what he's SUPPOSED to put on his exam room walls!
I'm starting to feel a tiny bit better, lung-wise. The pain patches and hot baths and sleeping sitting up are helping. But...I had to do a lot of physical work Tuesday and that was not good. It wore me out, bad. I'm still trying to recover from it. There's this constant headache, much worse than the usual chronic one, and it just won't go away for nuthin. Fever, sweats, shakes, chills. Weak and exhausted.
I saw the lung doc Monday, and he ordered a new higher-resolution cat scan, and a breathing test, and some bloodwork. I do the hospital tests on Monday, the soonest available slot.
He wants those done before doing a bronchoscopy. Good. That's a sort of invasive procedure, with biopsies, and if you carry MRSA and such you don't want scrapes or cuts in your lungs if you can help it.
He also repeated what other docs said: --Why the heck didn't Holy Cross do the bronchoscopy while you were there?!?
--Not sure. Maybe two reasons: I was a charity patient and bronchoscopies are expensive, and they really wanted my bed - they were full up and I insisted on being isolated because I have CA MRSA and also I'm immunocompromised. I mean, that should be protocol, the isolation. Over and over, they kept trying to put another patient in with me. Maybe once they finally GOT that I'm a CA MRSA carrier, they wanted me out of the hospital entirely.
--How's the CPAP working out?
Big grin! --Fabulous. Changed my life. Thank you.
Then I told him about borrowing Walter's Lidoderm patch, cause I can't afford to fill my own prescription. I asked the doc this:
--If the Lidoderm pain patches make me able to fully breathe, when nothing else works, are they then medically necessary?
--Yes.
But he refused to take it up with the insurance company. He said that's up to my chronic pain doc. I don't see him till next Thursday.
Big breathing help there, doc. Gee. Thanks.
This is a great doctor, but we do have some disagreements.
He also didn't know that oxygen is the #1 recommended treatment for dyspnea (shortness of breath) - even if your oxygen saturation is good. Like mine. From what I've seen on the web, this is in the context of hospice care. But I got him to agree to look at anything I could research up. While my primary would probably prescribe me oxygen, the insurance won't pay for it if my saturation is good.
By *curing* my COPD, I shot myself in the foot. Now I can't get oxygen.
And it's helpful for both serious allergies, and this shortness of breath accompanying my current acute lung disease.
Drat.
Walter and I went to get special pillows for me to sleep sitting up and keep my feet elevated. This sleeping with 6 regular pillows under my feet is a problem; it's hard to keep them stacked through the night. Unfortunately, we had to end up at Bed Bath and Beyond to get ones that worked for me. I tested them out, lying on the floor.
I haven't been inside a mall for many years. That's a hugely allergenic environment. It was HORRIBLE.
So is BB&B. That vicious poisonous so-called air freshener, and potpourri, and effing house perfume, some effing plug-ins or something equally toxic. The pillows we bought - three wedge-shaped and two big square ones - were so contaminated that after leaving them outside airing out for a few days, two are still completely unusable. They just got rained on too. Hypoallergenic, my dying ass.
BTW: I know some of you really love those smells. So please, excuse my scent rants. There are scents I really love that are almost lethal to me, and some foods too. It's not that I hate them because of personal taste, okay? They literally threaten my life - and prevent me from doing something vital like buying pillows. I hope you'll bear with me on this.
The pillows cost an unbudgeted $150 dollars right there. For five pillows. See why I can't afford oxygen? Insurance won't pay for so very many things I desperately need: my HEPA machines and ionizers and filters, bandages, my new NIOSH respirator that cost $40 at Home Depot since they no longer carry the replacement canisters for my old respirators. The nutritional supplements that are FDA approved to work on certain of my illnesses, like malic acid for the fibromyalgia.
Housecleaning. This is so important, I used to go without food to pay Sylvia $60 every 2 weeks, way less than she charges anyone else for a house cleaning job. I can't fit it in my budget any more. So I just do it myself, and get very sick from it.
A bed. A hospital-type bed that would properly elevate my head and feet. Like heaven. I shut such treasures out of my mind. They are not within my reach and I don't want to pine after them.
A Healing Garden. After my appointment, waiting for Walter to come back from the cardiologist and pick me up, I scootered around in it. What a wonderful place to have in a hospital, isn't it? And shouldn't we always consider these things in the context of health? My whole yard is a healing garden for me. Yes, it can infect me too. But on balance I'll take the risk, for the healing rewards my garden gives me.
The lung doc noticed I hadn't been there for a couple of years.
--Why didn't you refill your inhalers, the steroid and rescue ones?-- he asked. --I really didn't need them,-- I said. --My lungs were doing so well. After what, 15 or 20 years of inhalers? And I used to need a nebulizer too.
He wanted to listen and told me to breathe as deep as I could - oh my God, the pain! oh I ground my teeth! and tried so hard to breathe for him and not scream. Pain level 9.5.
He said my lungs were pretty clear. I told him about working in the compost heap. He asked whatever possessed me to do such a thing without my mask?
I said, I was stupid. I just purely screwed up. After I felt what happened to my lungs, I put on a mask every time. But before that? One time. Just dumb. I throw myself on the mercy of the court.
He said, --You were doing this before too. All this landscaping. Can't you get a different hobby?
I told him, --I have some other hobbies too. But I also lost so much, so many things I can do. Had to give up one thing I loved, after another, after another. There gets a point where it's not worth living any more. I won't go there. I'll take precautions, I'll be better about that, but I won't stop what I'm doing. I can only do it part of the year anyway, I'm still housebound a lot of the time. Semi-shut-in. Especially this year. It's already bad and it's going to get much worse, extremely bad for anyone with pollen allergies. I won't be able to leave the house much.
He didn't like it but he shut up.
He asked me, --Any chills, sweats, fever?
--Oh, YES! My temp last Thursday at the primary's was 98.9. I usually run 96 or 97, 97.2. With all the Prednisone and anti-inflammatories it's virtually impossible for me to get a fever. Even with my two most serious MRSA infections I almost never cracked a fever, not even past 98.0. The folks at the hospital couldn't believe it. I was two steps away from them amputating my foot from infection, and last October I nearly lost my whole leg, and still no fevers. So that 98.9 scared me half to death.
--And I get constant chills and sweats and chills and sweats. I mean, way worse than the usual ones. I went out on that cold day, when it was in the 50's and 60's? And I sweated so much, just scootering around, that my shirt was soaked and then dried up all caked with salt rime. (I asked Walter about this later, was I remembering it right? and he said --Yes, very much. Way more than usual.)
--Coughing?
--No. Which is really weird. I mean, I'm trying really hard not to cough, and I take the Guaifenesin and antihistamines of all kinds, but still.-- (This is why I didn't think it was either pneumonia or just pleurisy, alone.)
I asked him two more questions:
--Do I have COPD now, or not?
--We'll see after the breathing test.
--Do I have pneumonia?
--No. Definitely not.
And when I read the prescriptions, I could see that one thing he was specifically looking for was this: Aspergillus. That fungal lung infection people often get from compost particulates.
Exactly what I kept googling up when I entered *ground glass infiltrates,* the things they saw on my first cat scans at Holy Cross.
I wasn't sure if that's better or worse than pneumonia. So just now I bit my lip and googled it again.
I believe I'll be okay. I really do. I've made it through one medical scrape after another and I'm still here. I'm not coughing and not bringing up blood. That's good.
But I think I'd rather have pneumonia. For someone like me, an aspergillus lung infection is really not good. Very not good.
And it looks like I've got all the symptoms.
And in the immunocompromised, it can be fatal.
And there's not much they can do to cure it.
Here and Gone
Walter was here, but he's gone again. *sniff*
He's supposed to come home more often, as part of taking care of his heart. More rest and rejuvenation, and trips to the cardiologist too.
He's been back at work for a month now, and doing pretty well. The deep surgery pain is finally gone. The truck they got him is, of all things, an automatic. Yes. As in, *transmission.*
Can you imagine??? An automatic tranny big rig?
Nancy wanted to know why those weren't manufactured long ago, so I asked Walter. Turns out they've been using them in Europe for a long time. His feeling is, it wasn't macho enough for here. Finally, an American company bought a European company that made them, so now they're becoming available in the US too.
The point is this: In that big huge cab, with the 10-18 gears in a big rig, you have to clutch and stretch and pull that giant gearshift all the time, especially in the mountains and the city.
If you recently had your chest torn open, and your sternum cut apart with pruners or a bone saw - I forget what they used on him - and had three bypasses put in your heart, and your sternum bone knitted back together with a metal mesh because you have to keep that bone flexible so you can breathe? Can't let it just knot up together like a broken leg? That chest bone takes much, much longer to heal than other fractures do.
Well. Now put on a seatbelt and shift some gears in a big rig.
Ouch.
Every time you clutch, lean over, and especially PULL that gear shift, you're pressing the seat belt right on that torn-up sternum bone.
So here he gets an automatic.
I don't know if he would have made it, otherwise.
Even when he has to go manual? Get this: It's still not a gearshift.
It's PUSHBUTTON!
On the DASHBOARD!
This just cracks me up, no end.
He says between that and the cruise control, even *I* could drive it.
Ha!
I hate vehicles. I hate gas and diesel and exhaust and engine oils. I'm allergic to it all, it makes me deathly ill, and the stench is just horrible to me. I think cars could, and would have, been made much differently if it weren't for a lot of the Guy Stuff macho posturing involved.
Don't get me wrong, here. I am all female, and take a huge and healthy pleasure in spectating upon guys doing Guy Stuff posturing. OH fun!
I just really wish I could breathe around that stuff. Engine stuff, I mean.
Because, though I dislike the vehicles, I love to drive. Trucks too.
I have a Florida Class D (*medium truck*, *chauffeur's*) driving license. It applies to things like the 28' straight truck I used to drive sometimes for our business. A couple years ago they converted all our Class D's back to the regular kind. Still, if I get pulled over, that cop treats me with undue respect once he sees my Professional Driver license.
I used to change the oil and plugs and so forth in my cars, way way back. No more. I don't mind earth dirtiness one tiny bit. But that nasty engine goop? Yuck. Don't wanna go there. Won't.
Ah, but boy do I love to drive.
So did my grandma Helen. She had a pilot's license too. Oh, she'd go tooling through the desert at 125 MPH in her convertible. That's back when engines didn't have metric parts or computer bits, and when you wouldn't see another car on the desert highway for hours at a time.
Yeah, I got a lead foot. In my family we all do, who descended from Helen. It's genetic.
I really get a kick out of driving trucks. As Walter noticed, among my imperfections as a driver, I have a natural knack for Lane Position. And as we all know, making sure that truck stays exactly in its lane is a Very Good Thing both for the truck and the other drivers on the road.
So, anyway.
Walter was out on the road and needed to come home. He ended up disenchanted with the first cardiologist, for good reason. Great doc, but didn't have time to really talk to Walter, didn't even realize that being a long-haul trucker had significant implications on Walter's ability to work and do things like cardiotherapy and careful diet.
kdad had researched local docs for us, and we decided to go with the second name on his list.
But Walter's a real Guy about doc stuff, and I was anticipating some resistance in getting him over there.
When I ended up in the hospital for three days, that made it a different story. heh!
He came home. Fast.
On Monday, when I went to the lung doc, he went off to the New Cardiologist.
And he really liked him.
YAY!
He said, He LISTENED. I was his last patient of the day, and he never once rushed me or made me feel like he wanted to get it over with and go home. He understood about being a trucker! I told him, When you drive that big thing for 14 hours every day, when you're done, you just don't feel like exercising.
This new guy looks like a much better fit.
Excellent. One less thing to worry about.
He's supposed to come home more often, as part of taking care of his heart. More rest and rejuvenation, and trips to the cardiologist too.
He's been back at work for a month now, and doing pretty well. The deep surgery pain is finally gone. The truck they got him is, of all things, an automatic. Yes. As in, *transmission.*
Can you imagine??? An automatic tranny big rig?
Nancy wanted to know why those weren't manufactured long ago, so I asked Walter. Turns out they've been using them in Europe for a long time. His feeling is, it wasn't macho enough for here. Finally, an American company bought a European company that made them, so now they're becoming available in the US too.
The point is this: In that big huge cab, with the 10-18 gears in a big rig, you have to clutch and stretch and pull that giant gearshift all the time, especially in the mountains and the city.
If you recently had your chest torn open, and your sternum cut apart with pruners or a bone saw - I forget what they used on him - and had three bypasses put in your heart, and your sternum bone knitted back together with a metal mesh because you have to keep that bone flexible so you can breathe? Can't let it just knot up together like a broken leg? That chest bone takes much, much longer to heal than other fractures do.
Well. Now put on a seatbelt and shift some gears in a big rig.
Ouch.
Every time you clutch, lean over, and especially PULL that gear shift, you're pressing the seat belt right on that torn-up sternum bone.
So here he gets an automatic.
I don't know if he would have made it, otherwise.
Even when he has to go manual? Get this: It's still not a gearshift.
It's PUSHBUTTON!
On the DASHBOARD!
This just cracks me up, no end.
He says between that and the cruise control, even *I* could drive it.
Ha!
I hate vehicles. I hate gas and diesel and exhaust and engine oils. I'm allergic to it all, it makes me deathly ill, and the stench is just horrible to me. I think cars could, and would have, been made much differently if it weren't for a lot of the Guy Stuff macho posturing involved.
Don't get me wrong, here. I am all female, and take a huge and healthy pleasure in spectating upon guys doing Guy Stuff posturing. OH fun!
I just really wish I could breathe around that stuff. Engine stuff, I mean.
Because, though I dislike the vehicles, I love to drive. Trucks too.
I have a Florida Class D (*medium truck*, *chauffeur's*) driving license. It applies to things like the 28' straight truck I used to drive sometimes for our business. A couple years ago they converted all our Class D's back to the regular kind. Still, if I get pulled over, that cop treats me with undue respect once he sees my Professional Driver license.
I used to change the oil and plugs and so forth in my cars, way way back. No more. I don't mind earth dirtiness one tiny bit. But that nasty engine goop? Yuck. Don't wanna go there. Won't.
Ah, but boy do I love to drive.
So did my grandma Helen. She had a pilot's license too. Oh, she'd go tooling through the desert at 125 MPH in her convertible. That's back when engines didn't have metric parts or computer bits, and when you wouldn't see another car on the desert highway for hours at a time.
Yeah, I got a lead foot. In my family we all do, who descended from Helen. It's genetic.
I really get a kick out of driving trucks. As Walter noticed, among my imperfections as a driver, I have a natural knack for Lane Position. And as we all know, making sure that truck stays exactly in its lane is a Very Good Thing both for the truck and the other drivers on the road.
So, anyway.
Walter was out on the road and needed to come home. He ended up disenchanted with the first cardiologist, for good reason. Great doc, but didn't have time to really talk to Walter, didn't even realize that being a long-haul trucker had significant implications on Walter's ability to work and do things like cardiotherapy and careful diet.
kdad had researched local docs for us, and we decided to go with the second name on his list.
But Walter's a real Guy about doc stuff, and I was anticipating some resistance in getting him over there.
When I ended up in the hospital for three days, that made it a different story. heh!
He came home. Fast.
On Monday, when I went to the lung doc, he went off to the New Cardiologist.
And he really liked him.
YAY!
He said, He LISTENED. I was his last patient of the day, and he never once rushed me or made me feel like he wanted to get it over with and go home. He understood about being a trucker! I told him, When you drive that big thing for 14 hours every day, when you're done, you just don't feel like exercising.
This new guy looks like a much better fit.
Excellent. One less thing to worry about.
Sunday, April 08, 2007
A Miracle Ponytail
I don't know how to put more than four pix on a post, so I'm going to break this up a lot, and hope you'll bear with me. I mean, there's an end point to it all, and SURELY you didn't think only four pix would do when talking up ponytail palms, right?
pepektheassassin (My Uncle Pepek's Journal) is a wonder. She's a great poet. Great. If you like poetry, go check out her Poetry Thursday (PT) work. She's published scads of poems, won all kinds of awards. And published a book about writing poetry, and a prose book too, Chrysalis, about her time surviving cancer.
A bug-lover like me doesn't miss a title like that. I heard excellent reviews of it when it was published, but I still haven't read it. Sometimes I save up my dessert...I want to get everything she's ever written, and I know I could find used copies cheap - but I'm saving my mad money so I can buy them all brand new. I do that sometimes with authors I really really like. In her case, there's an added impetus: I want to pack them all up and send them off to her, return postage included, in the hopes that if I ask real nice maybe she'll autograph them for me and send them back home.
I got a plan, here. Sneaky, huh? heh!
When I first stumbled across her blog, I was particularly intrigued by the word, *pepek.* See, it looked familiar to me.
I checked with Walter. Yup. It's Czech.
As it turns out, she doesn't actually speak Czech.
But you see, all these things made me fall into her blog like stepping off the edge of a waterfall straight into a rainbow.
Then, of course, she had the good sense to marry a wonderful man. Who himself drove...a big truck. AND! Has not one not two but 5 stents in his heart. Not that I'm happy to hear about someone else's heart trouble, mind you. It's just that our marriages are so similar in enough ways, it kind of throws me. Either one of us could have married some rich big shot, okay? Take my word for it. Instead we married men who had brains and sense and loved us, and were not so schemingly ambitious that they would lose their sense of integrity.
Her talents are so strong in so many areas - writing, photography, art, acting, and more, I've no doubt - that this is a true renaissance woman. Besides being highly gifted and intelligent, she's made up of genuine kindness and compassion and great funny humor.
Plus! PLUS! She likes my ponytail palm. And my title for the iguana post.
I adore ponytails. They aren't palms at all, they're in the lily family. There are maybe 20 or so species. Of course, I want to collect them all.
So far I have a regular one (Beaucarnea recurvata) and a spiky ponytail (B. stricta). It looks like a punk hairdo. This is nice, because I love weird looking plants.
Ponytails are in a group of plants - not necessarily related - called caudiciform. Or, "elephant's foot." The base of the plant gets large, swollen, sometimes with fissured bark. Certain people think this looks neat, and they buy them and grow them and so forth.
So I've included some foot shots here.
The spiky ponytail is actually Walter's. He spotted it as we were plant shopping several years ago, and it's the first plant he ever asked for. The only one, really. Naturally I jumped all over that.
It's done nothing but grow ever since.
Click the last pic. See the little tiny pups on the base? Usually they die off. Sometimes they grow into branches. Often, you can cut them off and sprout them, get an instant baby plant. That's good, because growing them from seed is slow. I had some seedlings of several different ponytail species, but sorry to say, they were another Hurricane Wilma loss. I'll get more.
This big ol' triple-trunk ponytail is what most people here call *the regular kind.* It's the one where the iguana lives. It was one of the first plants I planted here, around 4 feet tall at the time, and has grown well, with no attendance from me at all.
It flowered for us twice already, from the tops of the two largest trunks. After the flower spikes died, the tops of the trunks split into more multiple branches. I love more branching, but it made the leaves grow shorter. Before that, they were very long and lush, sweeping the ground. Luckily, it decided to make yet another branch from the very base. So we'll get that long long ponytail look back pretty soon.
Every hurricane is different. Wilma ate our trees to death; we had huge losses of vegetation. The head-high plant debris piles were almost continuous on both sides of all streets for many weeks after the storm.
Unfortunately, a lot of people killed off damaged plants that could easily have been saved. You get into this cleanup mode, get tunnel vision with that chainsaw. Everyone's so focused on clearing out the damage and getting their life back, they sometimes don't stop to think. And the power was off for so long, people couldn't always turn to the internet for advice.
When I drove around doing plant rescues for several weeks after Wilma, I also picked up some interesting pieces of wood. I like to use them for yard art, and to grow orchids and bromeliads on.
Ponytail stumps were out there too. Most were way too big to get into the Saturn. Most could have been left in the person's yard to grow new branches. But people threw them away instead. They'd cut off the roots too, so I couldn't find any ponytails to replant.
Subscribe to:
Posts (Atom)
