Why does it only take an instant for a Hard Drive to die and weeks to get over it???
Yes, my Hard Drive gave up the ghost, and although I had good (but NOT extensive, nor multiple) back ups, I lost a lot of stuff! sob...
Even though I now have a larger, more reliable, and new Hard Drive; I feel I'm still in mourning for the old one. This is because I'm still installing programs, looking up passwords, inserting data, configuring and tweaking each program after it's installed (I think I just have two left to go). I'm no virgin to this; no indeedy, this is my third such experience, all due to old, used, bottom-of-the-line hardware.
What I'm lacking is a 2nd, or even a 3rd large, reliable Hard Drive so I can back up more than just my data, and multiple copies at that! My computer (one desk top) has long ago passed being a 'luxury' in my life. Somewhere between ordering my groceries online, storing my personal info, checking what's on TV, and staying in touch with the world via cyberpals, my computer has become a 'necessity'!
The stress on me of NOT having a working computer was intense. The stress of having my 'data' scattered about on various storage devices was agony. I felt like I was holding my breath from the moment that Hard Drive went, till I had all 'my stuff' reassembled on one Hard Drive. Then I felt like I was short of breath, till it was all at least half-way organized!
All of this happened to me even as I watched the 'cutsie' AOL commercials on television about the ravages various folks went though, from virus and mal-ware, because they didn't belong to AOL and weren't protected from such horrors. I sighed a lot. And nothing else mattered to me except getting my computer fully functioning, not rain, or sleep, or blogs! (It's a good thing this blog doesn't have many regular readers!)
Hopefully, things will now change; my luck, my ability to keep this blog in fresh material, the number of regular readers, and everything else! Believe me, a full, recent clone of your Drive is invaluable. And multiple clones, a gift from the gods. Anyone have any spare external USB Hard Drives???
Monday, December 06, 2004
Friday, November 05, 2004
Wheelchairs 101
Relief! Signified by a definite lessening of stress; I can really, actually, physically feel it. Kinda like being able to take a deep breath.
The 'Seating Specialist' from the Dealer spent over 2 hours here this morning 'tweaking' my new wheelchair! The cushion and back have now been configured to ME! Fits like a glove...
(For those of you who haven't spent time in a chair; it's like a prosthesis, becomes part of you. Don't EVER grab, or try to move, someone's chair without asking! It would be like me walking up and grabbing your arm and pulling on you to move you to a different spot on the floor! Rude huh?)
So I FINALLY, after almost 6 months, really have 'WORKING WHEELS' again! I've had it two weeks now, and have actually been to two doc appointments using it, though it hadn't been 'configured', nor had the electronics been 'tweaked'.
Now, I need to get some accessories; stuff I need that will help to make it 'functional'. Unfortunately, ALL the bags, baskets, side-bags I have laying around here (and that's a LOT, years worth!), NONE fit this smaller more compact chair! (Of course!). I also need stick on reflectors, a clip on flashlight, and a cup and holder (the old one broke).
Look through your car, dash, etc, and that's the kinds stuff I need to carry for the 'day' on my wheelchair.
I was hoping to start shopping tomorrow, as it will take some time to find just the 'right' stuff that 'fits', but rain is in the forecast, so it will have to wait. I immediately need two new bags for the back; one for the bottom, thermal, for groceries. And one on the top for 'daily' stuff, rain gear, gloves, reacher, thermos, etc. Also need one bag for 'arm' to hold important stuff, like keys & ciggies, but that can wait!
Most of this stuff is available online at the 'disability' sites. But I prefer the bicycle departments of local discount stores. If it will work on a bicycle, it will usually work on a wheelchair. Besides, you can touch it, check the fabric, how the straps work, etc.
But this 'stuff', though needed, is just icing on the cake. Right this minute, I could take off out the door if I needed to go somewhere (20 mile limit unless I want to carry along the small, light weight charger). Or if I just wanted to go out and watch the night traffic on the street!
Relief. Freedom. Sigh...
The 'Seating Specialist' from the Dealer spent over 2 hours here this morning 'tweaking' my new wheelchair! The cushion and back have now been configured to ME! Fits like a glove...
(For those of you who haven't spent time in a chair; it's like a prosthesis, becomes part of you. Don't EVER grab, or try to move, someone's chair without asking! It would be like me walking up and grabbing your arm and pulling on you to move you to a different spot on the floor! Rude huh?)
So I FINALLY, after almost 6 months, really have 'WORKING WHEELS' again! I've had it two weeks now, and have actually been to two doc appointments using it, though it hadn't been 'configured', nor had the electronics been 'tweaked'.
Now, I need to get some accessories; stuff I need that will help to make it 'functional'. Unfortunately, ALL the bags, baskets, side-bags I have laying around here (and that's a LOT, years worth!), NONE fit this smaller more compact chair! (Of course!). I also need stick on reflectors, a clip on flashlight, and a cup and holder (the old one broke).
Look through your car, dash, etc, and that's the kinds stuff I need to carry for the 'day' on my wheelchair.
I was hoping to start shopping tomorrow, as it will take some time to find just the 'right' stuff that 'fits', but rain is in the forecast, so it will have to wait. I immediately need two new bags for the back; one for the bottom, thermal, for groceries. And one on the top for 'daily' stuff, rain gear, gloves, reacher, thermos, etc. Also need one bag for 'arm' to hold important stuff, like keys & ciggies, but that can wait!
Most of this stuff is available online at the 'disability' sites. But I prefer the bicycle departments of local discount stores. If it will work on a bicycle, it will usually work on a wheelchair. Besides, you can touch it, check the fabric, how the straps work, etc.
But this 'stuff', though needed, is just icing on the cake. Right this minute, I could take off out the door if I needed to go somewhere (20 mile limit unless I want to carry along the small, light weight charger). Or if I just wanted to go out and watch the night traffic on the street!
Relief. Freedom. Sigh...
Tuesday, October 19, 2004
The Advent of Salvation by Water
After 182 days of dry, a record breaker by 1 day in this city, we have finally entered our 'Rainy Season'; first with sprinkles two days ago, then with showers, some heavy, yesterday. This afternoon, a real storm is expected.
The change of our seasons always means a subtle change in ME and the way I live my life!
The Rainy Season brings forth a feeling of wellness in me, perhaps because of my innate tendency to 'nest'. I slow down, don't push myself to 'produce', or at least not in the same way. My 'focus' moves away from the external world, to my world: my apartment, plants, cats, kitchen, etc.
Of course, I continue working. And at my usual pace. It just doesn't seem so hectic. I also won't hesitate a second to take a break to enjoy the current weather, as you have to make room in your schedule for it, NOT vice versa, or you will miss it all. You can't schedule a storm!
Because it is so much cooler once the Rainy Season sets in, I actually cook stuff; beans, stews, chili, biscuits, and other goodies. It's something I not only enjoy, but am pretty good at. Cooking is foolish to try in the heat of the summer; in the summer, real cooking is a chore; in the Rainy Season, it's a joy.
Sleep is better also; I sleep much better to the sound of rain. Not to mention those indulgent afternoon naps, snuggled under a blanket with a cat or two at the bottom of the bed.
I also seem to make more time for reading those mystery novels I love, always with a cat in my lap, or nearby. Reading seems more appropriate during the Rainy Season, and not the time waster it often feels like at other times of the year.
Then there is the hot chocolate, preferably with a big marshmallow floating on the top! In the midst of a storm, or when you've just come in, damp and chilled from the wet; you can have this wonderful treat from your childhood without the guilt of carbs, calories, or cholesterol! I like to take a mug of it out on the partially protected patio, sit and watch the storm do it's thing.
And if you feel you must go out, (cabin fever can set in!) a rainy day is the absolute best time to go to the zoo, Sea World, Disney, or any other attraction! Fewer people go; lines are much shorter. Having to deal with rain gear, and getting soaked somehow adds to the fun.
One of my all time favorite things to do at this time of year, and it's free, is to go to the beach when it's really storming. You can't plan it; you have to be ready, and willing, to go when the right storm happens along. With the wind blowing, the thunder, lightning, rain, and wild high surf, you can't tell the air, from the rain, from the fog, from the ocean. A violent and surreal experience.
But then, my entire life has been exactly that!
The change of our seasons always means a subtle change in ME and the way I live my life!
The Rainy Season brings forth a feeling of wellness in me, perhaps because of my innate tendency to 'nest'. I slow down, don't push myself to 'produce', or at least not in the same way. My 'focus' moves away from the external world, to my world: my apartment, plants, cats, kitchen, etc.
Of course, I continue working. And at my usual pace. It just doesn't seem so hectic. I also won't hesitate a second to take a break to enjoy the current weather, as you have to make room in your schedule for it, NOT vice versa, or you will miss it all. You can't schedule a storm!
Because it is so much cooler once the Rainy Season sets in, I actually cook stuff; beans, stews, chili, biscuits, and other goodies. It's something I not only enjoy, but am pretty good at. Cooking is foolish to try in the heat of the summer; in the summer, real cooking is a chore; in the Rainy Season, it's a joy.
Sleep is better also; I sleep much better to the sound of rain. Not to mention those indulgent afternoon naps, snuggled under a blanket with a cat or two at the bottom of the bed.
I also seem to make more time for reading those mystery novels I love, always with a cat in my lap, or nearby. Reading seems more appropriate during the Rainy Season, and not the time waster it often feels like at other times of the year.
Then there is the hot chocolate, preferably with a big marshmallow floating on the top! In the midst of a storm, or when you've just come in, damp and chilled from the wet; you can have this wonderful treat from your childhood without the guilt of carbs, calories, or cholesterol! I like to take a mug of it out on the partially protected patio, sit and watch the storm do it's thing.
And if you feel you must go out, (cabin fever can set in!) a rainy day is the absolute best time to go to the zoo, Sea World, Disney, or any other attraction! Fewer people go; lines are much shorter. Having to deal with rain gear, and getting soaked somehow adds to the fun.
One of my all time favorite things to do at this time of year, and it's free, is to go to the beach when it's really storming. You can't plan it; you have to be ready, and willing, to go when the right storm happens along. With the wind blowing, the thunder, lightning, rain, and wild high surf, you can't tell the air, from the rain, from the fog, from the ocean. A violent and surreal experience.
But then, my entire life has been exactly that!
Friday, October 15, 2004
Gone w/the whatever
Preparing for the arrival of the new wheelchair!
-I have exactly $49 left in bank, so tomorrow am going to buy a book of disabled transit tickets (10=5 round trips) for $45. It takes about a week to get them in the mail. And I will have them in hand ready to go.
-Monday I'll make a couple of doctor appointments; Hematologist, Urologist/Oncologist, for starters! Maybe Breast surgeon...
It usually takes 2-4 days to fully 'deep' charge new batteries, and get the 'feel' of using a different chair. So by a week from next Monday, I should be 'good to go'.
I feel like Scarlet O'Hara; because I swear I will never be in this position again! In next two years, I will find the bucks somehow, someway (perhaps I'll even feel well enough to write?) to have the OLD chair repaired for a 'back-up' and will buy a new walker (and maybe even feel strong enough to walk outside again)!
To be SOOO sick just because ya can't get to a doc is absolutely ridiculous! Not when I've spent my entire life being ill and now there's a chance to feel WELL. I had no idea that Medicare wouldn't just do any NEEDED repairs on chair in a fairly timely manner. But, it turns out, NOT when the chair is out of warranty!!!
Hah, NOW I know (what a terrible way to learn)...And I won't be caught w/my pants down again!
-I have exactly $49 left in bank, so tomorrow am going to buy a book of disabled transit tickets (10=5 round trips) for $45. It takes about a week to get them in the mail. And I will have them in hand ready to go.
-Monday I'll make a couple of doctor appointments; Hematologist, Urologist/Oncologist, for starters! Maybe Breast surgeon...
It usually takes 2-4 days to fully 'deep' charge new batteries, and get the 'feel' of using a different chair. So by a week from next Monday, I should be 'good to go'.
I feel like Scarlet O'Hara; because I swear I will never be in this position again! In next two years, I will find the bucks somehow, someway (perhaps I'll even feel well enough to write?) to have the OLD chair repaired for a 'back-up' and will buy a new walker (and maybe even feel strong enough to walk outside again)!
To be SOOO sick just because ya can't get to a doc is absolutely ridiculous! Not when I've spent my entire life being ill and now there's a chance to feel WELL. I had no idea that Medicare wouldn't just do any NEEDED repairs on chair in a fairly timely manner. But, it turns out, NOT when the chair is out of warranty!!!
Hah, NOW I know (what a terrible way to learn)...And I won't be caught w/my pants down again!
Sunday, October 10, 2004
Full Blown Iron Overload
After MONTHS now without a visit to the Hematologist or a Therapeutic Phlebotomy; I'm very ILL again.
I am suffering from: severe fatigue and weakness, cold white digits, joint & muscle pain, intermittent shortness of breath, brain fog, vertigo, choking, uncontrolled diabetes, easy bruising & bleeding, and all the other lovely stuff of Iron Overload.
I think the 'brain fog' is the most disturbing to me. (Though the joint and muscle pain are also bad.) Brain Fog is also the most frightening, though my experience tells me this particular symptom will totally disappear with treatment. Often I briefly can't think of how I usually perform a task, have to stop and cogitate on it. Or I can't remember a word, or how to spell it. Not a good thing for a writer!
I believe I'm as ill now as I was just before the 'final' diagnosis of Hereditary Hemochromatosis was made. The difference being, NOW I know what is wrong and how much treatment will change all this; therefore I have a better physical, social, and emotional tolerance for it.
Still, the days are just kinda blurring into each other. (What a waste of life! And I resent it big time!) Each one just a little sicker & less functional than the one before.
I'm probably spending 3/4 of my time now either lying in bed or just sitting. The other 1/4 of my time I spend DECIDING what I need to do next, then PLANNING out how I am gonna get the task accomplished. It's amazing how complicated things like taking a shower, or cooking something can be (by the way, can NOT do both these things in the same day!).
If someone were to actually follow me around for a day, they'd be 'shocked & stunned'. They'd want to put me in a hospital, mental institution or at least hire me a full-time help!
It's a really 'good' day if I can:
1) get dressed & brush my hair
2) take care of the kitties
3) do ONE 'major' chore ie shower, cook, etc.
4) do ONE 'elective' chore ie get mail & empty trash, load dishwasher, do a load of laundry.
5) do ONE 'fun' item ie water plants, do some writing, etc.
I'd be absolutely hysterical if the NEW wheelchair wasn't arriving SOON (maybe the end of this very week, but definitely by the next!).
Of course, it will probably take 6 - 8 weekly visits (at $10 each for transportation!) to the Hematologist to get my Hemoglobin/Hematicrit back down to normal. And from past experience, I will start feeling 'gradually' better (just as I got gradually so ill), as soon as this process starts.
But at least, I'll be on the 'up' side of this thing (again)! And when that happens, one of the FIRST things I must do is to find a person & the bucks to have old wheelchair 'fixed' AND buy a new rolling walker, so that I'm NEVER, NEVER, EVER in this position again!!!
And so goes the 'current' days of my life...
I am suffering from: severe fatigue and weakness, cold white digits, joint & muscle pain, intermittent shortness of breath, brain fog, vertigo, choking, uncontrolled diabetes, easy bruising & bleeding, and all the other lovely stuff of Iron Overload.
I think the 'brain fog' is the most disturbing to me. (Though the joint and muscle pain are also bad.) Brain Fog is also the most frightening, though my experience tells me this particular symptom will totally disappear with treatment. Often I briefly can't think of how I usually perform a task, have to stop and cogitate on it. Or I can't remember a word, or how to spell it. Not a good thing for a writer!
I believe I'm as ill now as I was just before the 'final' diagnosis of Hereditary Hemochromatosis was made. The difference being, NOW I know what is wrong and how much treatment will change all this; therefore I have a better physical, social, and emotional tolerance for it.
Still, the days are just kinda blurring into each other. (What a waste of life! And I resent it big time!) Each one just a little sicker & less functional than the one before.
I'm probably spending 3/4 of my time now either lying in bed or just sitting. The other 1/4 of my time I spend DECIDING what I need to do next, then PLANNING out how I am gonna get the task accomplished. It's amazing how complicated things like taking a shower, or cooking something can be (by the way, can NOT do both these things in the same day!).
If someone were to actually follow me around for a day, they'd be 'shocked & stunned'. They'd want to put me in a hospital, mental institution or at least hire me a full-time help!
It's a really 'good' day if I can:
1) get dressed & brush my hair
2) take care of the kitties
3) do ONE 'major' chore ie shower, cook, etc.
4) do ONE 'elective' chore ie get mail & empty trash, load dishwasher, do a load of laundry.
5) do ONE 'fun' item ie water plants, do some writing, etc.
I'd be absolutely hysterical if the NEW wheelchair wasn't arriving SOON (maybe the end of this very week, but definitely by the next!).
Of course, it will probably take 6 - 8 weekly visits (at $10 each for transportation!) to the Hematologist to get my Hemoglobin/Hematicrit back down to normal. And from past experience, I will start feeling 'gradually' better (just as I got gradually so ill), as soon as this process starts.
But at least, I'll be on the 'up' side of this thing (again)! And when that happens, one of the FIRST things I must do is to find a person & the bucks to have old wheelchair 'fixed' AND buy a new rolling walker, so that I'm NEVER, NEVER, EVER in this position again!!!
And so goes the 'current' days of my life...
Monday, October 04, 2004
Fickle Fate Strikes Again
I should have known...
The day AFTER spending a couple of hours of actually working on a poem, I had all kinds of weird, strange, and unusual computer problems. So I used what time I wasn't flat out in bed from exhaustion, trying to make 'puter work.
Luckily, a friend had just sent me a NEW USB optical mouse and pad. But that wasn't the only prob. For some reason, my 'fan' had stopped working and the CPU had really overheated. I was able to leave it off for a few hours; and when I did a cold boot, the fan was again working. But THAT is something I am really gonna have to watch; not only don't want a fire, don't want my HD melted!
The bottom line was that I was completely unable to do anything on the computer; shopping, hobby, email, etc for awhile. So frustrating. Sigh, I need a new computer (and a laptop, and a PDA)
The day AFTER spending a couple of hours of actually working on a poem, I had all kinds of weird, strange, and unusual computer problems. So I used what time I wasn't flat out in bed from exhaustion, trying to make 'puter work.
Luckily, a friend had just sent me a NEW USB optical mouse and pad. But that wasn't the only prob. For some reason, my 'fan' had stopped working and the CPU had really overheated. I was able to leave it off for a few hours; and when I did a cold boot, the fan was again working. But THAT is something I am really gonna have to watch; not only don't want a fire, don't want my HD melted!
The bottom line was that I was completely unable to do anything on the computer; shopping, hobby, email, etc for awhile. So frustrating. Sigh, I need a new computer (and a laptop, and a PDA)
Friday, October 01, 2004
Clean Clothes!
I now have some clean clothes - and am working on having MORE clean clothes.
I borrowed the $206 (including tax & shipping) to buy it; but I just felt I had no other option. (Of course, would have liked to get a 'bigger' one, or even a stack washer/dryer unit, but that is completely out of my current financial reach. In fact, it will be difficult for me to pay what I borrowed, back.) Still, if this little washer only lasts me a year, it would be a terrific bargain.
This may be the smallest apartment sized automatic washing machine made: capacity 4.9 lbs. It connects to the kitchen faucet, and drains into the sink.
It arrived Wednesday afternoon via the wonderful brown truck. I managed to get it out of it's box, but I was unable to do the few things it needed to make it functional.
Thursday, a friend came over and finished 'installing' it; the hoses and 'quick release' faucet connection had to be assembled, and leg covers that would allow me to slide the washer on the kitchen floor to the sink, had to be added.
I've been 'washing' ever since! (And believe me, everything I had was dirty, as I've been unable to find & hire an independent Provider.)
It doesn't hold much at a time; a couple of towels, a pair of slacks, a blouse, a pair of socks is about it for one load. But it does a full 'cycle'; wash, 2 rinses, and spin drains. I can do load after load, so it's lack of capacity is only a small inconvenience!
Today I managed to 'string' two 'clotheslines between two bookcases in my living room and without blocking either the front door or the line of site to the television!. (Lucy & Ethel, the 6 month old kittens think this is just great fun!) As I write this, I have about 10 various sized towels hanging there to dry. Clothes I hang on clothes hangers on the molding of doorways.
Sure brings back memories of my childhood and those rough Missouri winters, with clean clothes hanging all over the house to dry, from clotheslines strung anywhere they could put 'em up!
I've gotten nothing ELSE done. Am absolutely worn out; all my energy (and then some) has been used up. But it's worth it.
Independence, even a modicum of it, is a great thing...
I borrowed the $206 (including tax & shipping) to buy it; but I just felt I had no other option. (Of course, would have liked to get a 'bigger' one, or even a stack washer/dryer unit, but that is completely out of my current financial reach. In fact, it will be difficult for me to pay what I borrowed, back.) Still, if this little washer only lasts me a year, it would be a terrific bargain.
This may be the smallest apartment sized automatic washing machine made: capacity 4.9 lbs. It connects to the kitchen faucet, and drains into the sink.
It arrived Wednesday afternoon via the wonderful brown truck. I managed to get it out of it's box, but I was unable to do the few things it needed to make it functional.
Thursday, a friend came over and finished 'installing' it; the hoses and 'quick release' faucet connection had to be assembled, and leg covers that would allow me to slide the washer on the kitchen floor to the sink, had to be added.
I've been 'washing' ever since! (And believe me, everything I had was dirty, as I've been unable to find & hire an independent Provider.)
It doesn't hold much at a time; a couple of towels, a pair of slacks, a blouse, a pair of socks is about it for one load. But it does a full 'cycle'; wash, 2 rinses, and spin drains. I can do load after load, so it's lack of capacity is only a small inconvenience!
Today I managed to 'string' two 'clotheslines between two bookcases in my living room and without blocking either the front door or the line of site to the television!. (Lucy & Ethel, the 6 month old kittens think this is just great fun!) As I write this, I have about 10 various sized towels hanging there to dry. Clothes I hang on clothes hangers on the molding of doorways.
Sure brings back memories of my childhood and those rough Missouri winters, with clean clothes hanging all over the house to dry, from clotheslines strung anywhere they could put 'em up!
I've gotten nothing ELSE done. Am absolutely worn out; all my energy (and then some) has been used up. But it's worth it.
Independence, even a modicum of it, is a great thing...
Tuesday, September 21, 2004
More on Hemochromatosis
This came today as a Google 'news alert' I have requested on HH: it's very symptom descriptive, yet doesn't begin to say how sick I am right now (and doesn't mention cancers or memory probs).
Again spending much of my time in bed or just sitting; if I didn't actually KNOW what was wrong, I'd surely ALSO be having a nervous breakdown. (Where oh where is that wheelchair??? When you feel this bad, three weeks seems so very long!)
FROM: www.Newsday.com
The genetic issue: hemochromatosis
There is no dispute that some people do need to worry about iron overload: about 1 million Americans (mostly of northern European descent) have a hereditary disorder known as hemochromatosis, which causes them to absorb and store too much iron. When untreated, this can lead to weakness, headaches, darkening of skin color, sexual dysfunction, joint pain and eventually diabetes, arthritis, liver disease or heart failure (but not coronary artery disease and heart attacks). People with hemochromatosis must have blood removed frequently to lower their iron levels, and they must avoid iron supplements.
Again spending much of my time in bed or just sitting; if I didn't actually KNOW what was wrong, I'd surely ALSO be having a nervous breakdown. (Where oh where is that wheelchair??? When you feel this bad, three weeks seems so very long!)
FROM: www.Newsday.com
The genetic issue: hemochromatosis
There is no dispute that some people do need to worry about iron overload: about 1 million Americans (mostly of northern European descent) have a hereditary disorder known as hemochromatosis, which causes them to absorb and store too much iron. When untreated, this can lead to weakness, headaches, darkening of skin color, sexual dysfunction, joint pain and eventually diabetes, arthritis, liver disease or heart failure (but not coronary artery disease and heart attacks). People with hemochromatosis must have blood removed frequently to lower their iron levels, and they must avoid iron supplements.
Monday, September 20, 2004
New Wheelchair on Order
My new wheelchair was actually ordered this morning. It should be delivered between 2 - 3 weeks!
But I won't believe it till I actually HAVE it...
But I won't believe it till I actually HAVE it...
Sunday, September 19, 2004
Aloha Party!
I had such FUN this evening!!! I can't even remember when I've had such a good time. I had such a good time; I had to come home and lie down for awhile, I wore myself out!
Our Apartment Complex had an Aloha Party; there were leis, BBQ ribs & all the trimmings, a DJ, and island decoration around the pool, and eventually, about 150 people. It's been years since the management hosted such an event.
I went on my scooter, not nearly as maneuverable as a wheelchair (especially in a food line), but it got me there and back! I saw folks I hadn't seen in months (or years!). We managed to talk and get 'caught up' despite the loud music and the pool full of kids.
At one point a group of women, young & old, neighbors all, perhaps 20 or so, spontaneously got together and did some 'line dancing' (probably because none of the men would dance). They were good, too! Almost looked like they'd gotten together and rehearsed. The 'rest' of us encouraged & applauded them.
But the high point of the party was when the ONE middle-aged, assistant manager, the woman who is mean to EVERYONE, the woman who is disliked by most, got thrown in the deep end of the pool, clothes, shoes, watch, and all!!!
It was inadvertent, she just happened to be walking by when a young man was tossing his swimsuit clad girl friend into the pool. This assistant manager got between them and the water, she went in instead of the girlfriend. Anyway, the crowd went wild with screams and applause of approval!
Till someone realized that she hadn't surfaced!!! Two people jumped in and found her at the bottom of the pool. She'd sunk like a stone! Turns out she didn't know how to swim! She was fine; hadn't even swallowed or inhaled any water, but it was obvious she was 'shaken' and scared. Also, she had to know how 'happy' everyone was to see her get 'dunked'. Wonder if it'll change her attitude any??? Wonder if she'll learn to swim? Wonder if she learned to stay away from pool side???
All this at a 'family', non-alcoholic, late afternoon party! Definitely a Southern California type of event; the weather was picture perfect, the pool water warm (though I didn't go in), and there were palm trees to look at.
Besides eating, chair dancing, and talking too much, I got the chance to give out DOZENS of my business cards to new neighbors and old acquaintances that had lost my phone and/or unit number. (This place is HUGE, 35 buildings on 7 acres, for a total of 500 apartments.)
I didn't even get 'hassled' about smoking, as so often is the case at social events these days! As it turned out, the group of folks I was sitting with were mostly smokers! At one point, I specifically looked around the pool area for smokers; there were a bunch of 'em. Certainly more than the 20% of the population that the government claims! At least at THIS party!
I only stayed a couple of hours; just got too weak and tired (all that 'chair' dancing didn't help!), and the party was still in full swing when I left. But it was a wonderful couple of hours! I went home with a full belly, and a full heart...
Our Apartment Complex had an Aloha Party; there were leis, BBQ ribs & all the trimmings, a DJ, and island decoration around the pool, and eventually, about 150 people. It's been years since the management hosted such an event.
I went on my scooter, not nearly as maneuverable as a wheelchair (especially in a food line), but it got me there and back! I saw folks I hadn't seen in months (or years!). We managed to talk and get 'caught up' despite the loud music and the pool full of kids.
At one point a group of women, young & old, neighbors all, perhaps 20 or so, spontaneously got together and did some 'line dancing' (probably because none of the men would dance). They were good, too! Almost looked like they'd gotten together and rehearsed. The 'rest' of us encouraged & applauded them.
But the high point of the party was when the ONE middle-aged, assistant manager, the woman who is mean to EVERYONE, the woman who is disliked by most, got thrown in the deep end of the pool, clothes, shoes, watch, and all!!!
It was inadvertent, she just happened to be walking by when a young man was tossing his swimsuit clad girl friend into the pool. This assistant manager got between them and the water, she went in instead of the girlfriend. Anyway, the crowd went wild with screams and applause of approval!
Till someone realized that she hadn't surfaced!!! Two people jumped in and found her at the bottom of the pool. She'd sunk like a stone! Turns out she didn't know how to swim! She was fine; hadn't even swallowed or inhaled any water, but it was obvious she was 'shaken' and scared. Also, she had to know how 'happy' everyone was to see her get 'dunked'. Wonder if it'll change her attitude any??? Wonder if she'll learn to swim? Wonder if she learned to stay away from pool side???
All this at a 'family', non-alcoholic, late afternoon party! Definitely a Southern California type of event; the weather was picture perfect, the pool water warm (though I didn't go in), and there were palm trees to look at.
Besides eating, chair dancing, and talking too much, I got the chance to give out DOZENS of my business cards to new neighbors and old acquaintances that had lost my phone and/or unit number. (This place is HUGE, 35 buildings on 7 acres, for a total of 500 apartments.)
I didn't even get 'hassled' about smoking, as so often is the case at social events these days! As it turned out, the group of folks I was sitting with were mostly smokers! At one point, I specifically looked around the pool area for smokers; there were a bunch of 'em. Certainly more than the 20% of the population that the government claims! At least at THIS party!
I only stayed a couple of hours; just got too weak and tired (all that 'chair' dancing didn't help!), and the party was still in full swing when I left. But it was a wonderful couple of hours! I went home with a full belly, and a full heart...
Friday, September 10, 2004
An anniversary, of sorts,
Today marks three years since my first (of THREE) Transurethral Resection of my Bladder, TURB for short.
And the diagnosis of T1 G3 Cancer.
I awoke in the middle of that night, in a hospital room, with the T.V. going, (tubes going into my arms and bladder; plastic bags hanging from a couple of poles) and watched the travesty/tragedy unfold in New York.
Of course, I was stunned, unbelieving, and upset, even in my post surgical groggy state. Watching the second plane hit the towers, and unable to go back to sleep; I insisted on getting up in my wheelchair, and going OUT of the hospital to smoke.
The nurses refused to help me. I had to threaten to 'unhook' everything myself! (Which I would have done!). I even had to threaten to sign out AMA (Against Medical Advice).
I had lived through one more cancer surgery. My country was under attack. Even today, I don't see where the terrible 'sin' of being a 'smoker', and needing a ciggie, fits into all this BIG stuff.
As it turns out, I did not even have to leave the hospital building, or sign myself out. The nurses wheeled me out onto the 'outside' concrete stairwell, and there I stayed through 3 ciggies. Hiding from the world, feeling the night, shivering in the cool air, trying to emotionally absorb all that was happeing, exalting in being alive, and adding my cigarette butts to the multitude already littering the concrete 'floor' of the little porch area.
Eventually, I went back to bed, got some meds, some juice; I was able to sleep for a few hours.
Even though this was my FOURTH cancer diagnosis (all unrelated) in as many decades; this one really hit me hard.
I am surprised, that three years later, I still HAVE my bladder, let alone my life. And though not in remission, so far, it seems to be responding to treatment.
And, of course NOW I know the cause of all the cancers (and it aint' smoking folks!), but Hereditary Hemochromatosis!
This 'slice of life' gives credence to the adage: don't sweat the little things.
EXCEPT that since I still have a life; I value every second of it, and I want to LIVE it, not be hung up in illness because of bureaucratic red tape! Which makes it all sooo much more frustrating!
No, I haven't gotten insurance approval for repairs/replacement of my wheelchair yet. Nor have I been able to resume medical treatments with my various specialists. And yes, physically, I get a little worse, a little less functional by the day.
And the diagnosis of T1 G3 Cancer.
I awoke in the middle of that night, in a hospital room, with the T.V. going, (tubes going into my arms and bladder; plastic bags hanging from a couple of poles) and watched the travesty/tragedy unfold in New York.
Of course, I was stunned, unbelieving, and upset, even in my post surgical groggy state. Watching the second plane hit the towers, and unable to go back to sleep; I insisted on getting up in my wheelchair, and going OUT of the hospital to smoke.
The nurses refused to help me. I had to threaten to 'unhook' everything myself! (Which I would have done!). I even had to threaten to sign out AMA (Against Medical Advice).
I had lived through one more cancer surgery. My country was under attack. Even today, I don't see where the terrible 'sin' of being a 'smoker', and needing a ciggie, fits into all this BIG stuff.
As it turns out, I did not even have to leave the hospital building, or sign myself out. The nurses wheeled me out onto the 'outside' concrete stairwell, and there I stayed through 3 ciggies. Hiding from the world, feeling the night, shivering in the cool air, trying to emotionally absorb all that was happeing, exalting in being alive, and adding my cigarette butts to the multitude already littering the concrete 'floor' of the little porch area.
Eventually, I went back to bed, got some meds, some juice; I was able to sleep for a few hours.
Even though this was my FOURTH cancer diagnosis (all unrelated) in as many decades; this one really hit me hard.
I am surprised, that three years later, I still HAVE my bladder, let alone my life. And though not in remission, so far, it seems to be responding to treatment.
And, of course NOW I know the cause of all the cancers (and it aint' smoking folks!), but Hereditary Hemochromatosis!
This 'slice of life' gives credence to the adage: don't sweat the little things.
EXCEPT that since I still have a life; I value every second of it, and I want to LIVE it, not be hung up in illness because of bureaucratic red tape! Which makes it all sooo much more frustrating!
No, I haven't gotten insurance approval for repairs/replacement of my wheelchair yet. Nor have I been able to resume medical treatments with my various specialists. And yes, physically, I get a little worse, a little less functional by the day.
Thursday, August 26, 2004
Gradually Declining, Again
The past few days have been rough, physically. And remind me exactly of how sick I was before I was first diagnosed with Hereditary Hemochromatosis.
In fact, I have been in bed most of the time lately. I get up, do what little I can (which isn't much!) before I run out of steam, then back to bed.
The kinds of things I usually do when I am out of bed (and most tasks I can't complete without resting or going back to bed for awhile, have to be done in stages!):
prepare & eat some simple food, (sandwiches!)
OR do up a few dishes,
OR take prescribed meds,
OR get my email,
OR take care of the fur babies (they are back on an antibiotic! $60!!!),
OR brush my hair and get dressed,
OR take a shower without washing my hair,
( so far I've showered once in the last week - don't try to imagine what I smell, look like!),
OR return a phone call,
OR empty the trash and get the snail mail,
(and BOTH are really piled up)
OR do my blood glucose & take insulin
OR water the plants.
The symptoms ARE back in full force, though it has been a gradual process:
Muscle pain
Joint pain and soreness
foggy' thinking, can't make decisions
Increasing loss of balance
Easy bleeding & bruising
Choking
Severe Fatigue
NO energy
Muscle weakness (to the point I can hardly sit upright in a chair)
Blue 'lines' in my nails; cold white digits (from lack of circulation - blood is too thick)
Shortness of breath (Ditto, thick blood)
High Blood Sugar symptoms ('cause I'm not taking care of my diabetes)
Therefore, I am NOT:
going anywhere
doing any work (websites, lists, etc)
getting out of the apartment
reading
watching an entire program on TV
making any $$$ (and I am so very broke!)
writing (in any 'working' type sense)
listening to HAM radio
seeing anyone
taking care of 'business'
doing any basic household chores
on any kind of 'life' schedule
living
I realize that this current 'episode' may be self-limiting. It has happened that way before, more than once. I could feel better in a few days. But these 'episodes' are definitely getting closer together and worse.
I also realize that once I can get back to my docs (and boy, is playing 'catch-up' with them and all appointments and procedures going to be difficult & transit cost expensive!), that ALL these symptoms will probably subside, and once again become manageable; but for now I suffer, am hurting, am dejected, am sick, and yes, am depressed.
Life is feeling pretty grim...
In fact, I have been in bed most of the time lately. I get up, do what little I can (which isn't much!) before I run out of steam, then back to bed.
The kinds of things I usually do when I am out of bed (and most tasks I can't complete without resting or going back to bed for awhile, have to be done in stages!):
prepare & eat some simple food, (sandwiches!)
OR do up a few dishes,
OR take prescribed meds,
OR get my email,
OR take care of the fur babies (they are back on an antibiotic! $60!!!),
OR brush my hair and get dressed,
OR take a shower without washing my hair,
( so far I've showered once in the last week - don't try to imagine what I smell, look like!),
OR return a phone call,
OR empty the trash and get the snail mail,
(and BOTH are really piled up)
OR do my blood glucose & take insulin
OR water the plants.
The symptoms ARE back in full force, though it has been a gradual process:
Muscle pain
Joint pain and soreness
foggy' thinking, can't make decisions
Increasing loss of balance
Easy bleeding & bruising
Choking
Severe Fatigue
NO energy
Muscle weakness (to the point I can hardly sit upright in a chair)
Blue 'lines' in my nails; cold white digits (from lack of circulation - blood is too thick)
Shortness of breath (Ditto, thick blood)
High Blood Sugar symptoms ('cause I'm not taking care of my diabetes)
Therefore, I am NOT:
going anywhere
doing any work (websites, lists, etc)
getting out of the apartment
reading
watching an entire program on TV
making any $$$ (and I am so very broke!)
writing (in any 'working' type sense)
listening to HAM radio
seeing anyone
taking care of 'business'
doing any basic household chores
on any kind of 'life' schedule
living
I realize that this current 'episode' may be self-limiting. It has happened that way before, more than once. I could feel better in a few days. But these 'episodes' are definitely getting closer together and worse.
I also realize that once I can get back to my docs (and boy, is playing 'catch-up' with them and all appointments and procedures going to be difficult & transit cost expensive!), that ALL these symptoms will probably subside, and once again become manageable; but for now I suffer, am hurting, am dejected, am sick, and yes, am depressed.
Life is feeling pretty grim...
Monday, August 23, 2004
Go little scooter, go!
I went to Long's again this afternoon. (And it was an absolutely beautiful summer day!)
Thanks to the NEW batteries for that old scooter; seldom does a day go by now that I don't get out, even if it's just to empty the trash and get the mail. Or just sit in the sun and read for awhile!
And I mentally bless the person who 'donated' the batteries, every time I do!
And it's a good thing, as I talked to insurance rep today; my wheelchair replacement/repairs is STILL hung up in the decision process. They are trying to decide which route to go. Today she told me it shouldn't be over another week. Yea, right!
But because I've got the working scooter, life is much, much better (though it would be nice to get to doc appointments)...
Thanks to the NEW batteries for that old scooter; seldom does a day go by now that I don't get out, even if it's just to empty the trash and get the mail. Or just sit in the sun and read for awhile!
And I mentally bless the person who 'donated' the batteries, every time I do!
And it's a good thing, as I talked to insurance rep today; my wheelchair replacement/repairs is STILL hung up in the decision process. They are trying to decide which route to go. Today she told me it shouldn't be over another week. Yea, right!
But because I've got the working scooter, life is much, much better (though it would be nice to get to doc appointments)...
Thursday, August 19, 2004
Another Bad Day
My foot is hurting worse and worse. Even the bottom of my foot is now swollen. Most of the toes, and the 'toe' half of my foot is 'twitching'. Of course it wasn't this bad till the doc's office closed for the day!
Would be helpful also if I had houseshoes, but my last pair of those fell apart over a year ago, and I haven't been able to afford new ones (gotta buy cat food and litter, ya know - maybe I need a shrink?)
I've physically overdone it the past couple of days; today I have very little energy. Did get washed, dressed, did my hair this morning. But spent most of the day in bed. Slept ALL afternoon (I hate that!). Especially as it is totally PREVENTABLE; I just need to be able to get to the Hematologist!
I am really MISSING having a TV in the Living Room. It was over 20 yrs. old and finally, like everything else around here, gave up the ghost! It went into the trash bin a few days ago (along with the unrepairable apartment sized 10 yr. old washer and dryer that has sat here uselessly for months).
I do have a 13" TV in the bedroom, and actually that's where I need one the most (like today). But I am already getting tired of 'living' in the Bedroom. I find that I am eating, reading, while sitting on my bed (there's no chair in there). So this too, was bothering me today also, this recent change in my 'background'...
So AFTER I slept half the day; I was hungry (still am). Had the energy to feed the fur babies, and put yesterday's dirty dishes to soak, which got them off the counter. But then I didn't have enough energy to cook.
While I was doing the above, my blue shorts, which are 7 yrs. old and I did weigh 50 lbs more when I originally purchased 'em, fell down around my ankles. I just stepped out of 'em.
Then I felt depressed for real. It just seems that no matter HOW I try, nothing works! This includes kids I raised that could care less, GOOD ebooks that aren't selling, Insurance that I worked all my life for (MediCare), the search for legit work & jobs I can do from here (I really AM a good writer) and (so hard!) asking others for help.
As I stood there in my underpants, I actually started crying, something that doesn't happen often. It was based on frustration and it didn't last long.
I picked up the shorts, put 'em back on. Made myself a cup of decaf, in the hopes of 'de-stressing'. Using my broken walker and barefooted, I limped my way to my very used and doubtfully will NOT work much longer computer, and logged on to my blog.
Perhaps by the time I finish this, I'll have the energy to fry a hamburger patty and open a can of veggies; I'll be eating my dinner in the middle of the night. Sigh...
PS -Jim GU- does the above day constitute accepting that the world is not fair and dealing with it? And does this mean I do not have TALENT, DRIVE, ABLITITY or I wouldn't be in this fix? Or could it be I don't have TALENT, DRIVE, ABILITY because of my enforced lifestyle???
Would be helpful also if I had houseshoes, but my last pair of those fell apart over a year ago, and I haven't been able to afford new ones (gotta buy cat food and litter, ya know - maybe I need a shrink?)
I've physically overdone it the past couple of days; today I have very little energy. Did get washed, dressed, did my hair this morning. But spent most of the day in bed. Slept ALL afternoon (I hate that!). Especially as it is totally PREVENTABLE; I just need to be able to get to the Hematologist!
I am really MISSING having a TV in the Living Room. It was over 20 yrs. old and finally, like everything else around here, gave up the ghost! It went into the trash bin a few days ago (along with the unrepairable apartment sized 10 yr. old washer and dryer that has sat here uselessly for months).
I do have a 13" TV in the bedroom, and actually that's where I need one the most (like today). But I am already getting tired of 'living' in the Bedroom. I find that I am eating, reading, while sitting on my bed (there's no chair in there). So this too, was bothering me today also, this recent change in my 'background'...
So AFTER I slept half the day; I was hungry (still am). Had the energy to feed the fur babies, and put yesterday's dirty dishes to soak, which got them off the counter. But then I didn't have enough energy to cook.
While I was doing the above, my blue shorts, which are 7 yrs. old and I did weigh 50 lbs more when I originally purchased 'em, fell down around my ankles. I just stepped out of 'em.
Then I felt depressed for real. It just seems that no matter HOW I try, nothing works! This includes kids I raised that could care less, GOOD ebooks that aren't selling, Insurance that I worked all my life for (MediCare), the search for legit work & jobs I can do from here (I really AM a good writer) and (so hard!) asking others for help.
As I stood there in my underpants, I actually started crying, something that doesn't happen often. It was based on frustration and it didn't last long.
I picked up the shorts, put 'em back on. Made myself a cup of decaf, in the hopes of 'de-stressing'. Using my broken walker and barefooted, I limped my way to my very used and doubtfully will NOT work much longer computer, and logged on to my blog.
Perhaps by the time I finish this, I'll have the energy to fry a hamburger patty and open a can of veggies; I'll be eating my dinner in the middle of the night. Sigh...
PS -Jim GU- does the above day constitute accepting that the world is not fair and dealing with it? And does this mean I do not have TALENT, DRIVE, ABLITITY or I wouldn't be in this fix? Or could it be I don't have TALENT, DRIVE, ABILITY because of my enforced lifestyle???
Tuesday, July 27, 2004
The Donald (Trump that is)
First thing I heard when I woke this morning was Donald Trump. (I leave the radio on all night.)
In a loud, strident, and obnoxious voice he was doing a PSA TELLING young people not to smoke. At the end of the spot, he added: "Don't smoke, don't drink, don't do drugs; it will ruin your life."
Even in my sleep-groggy, no-caffeine-yet state; my mind said 'what is wrong with this picture?'
So, I was thinking about this (and Donald's voice was still ringing in my ears) as I started my morning routine.
"Don't smoke, don't drink, don't do drugs; it will ruin your life."
It didn't take me long, I hadn't even finished my first cuppa coffee when my objections to this statement gelled in my mind:
Although Donald's 'telling not showing' statement (do as I say, not as I do) MAY be a 'correct' statement:
1) it is so "I" oriented
2) it is totally selfish
3) it is me, me, me
It would matter LITTLE to me that friends, mates, loved ones, co-workers, neighbors, relatives, etc. not smoke, drink, or do drugs. (Though these are all admirable traits.)
What WOULD matter to me was that people legitimately made an effort in their lives to NOT lie, cheat, or steal. That they believed (no matter any religion or not) in 'do unto others'.
It WOULD matter to me that they had integrity, manners, knew how to read and write and knew where Iraq was!
So, in today's American culture you are an upstanding citizen if you don't smoke, drink, or do drugs. BUT you can embezzle from you employer, not bother to check on an elderly neighbor, cheat on your mate, not bother to vote, not respect your parents and elders, or lie on your tax return???
No wonder we're in trouble...
In a loud, strident, and obnoxious voice he was doing a PSA TELLING young people not to smoke. At the end of the spot, he added: "Don't smoke, don't drink, don't do drugs; it will ruin your life."
Even in my sleep-groggy, no-caffeine-yet state; my mind said 'what is wrong with this picture?'
So, I was thinking about this (and Donald's voice was still ringing in my ears) as I started my morning routine.
"Don't smoke, don't drink, don't do drugs; it will ruin your life."
It didn't take me long, I hadn't even finished my first cuppa coffee when my objections to this statement gelled in my mind:
Although Donald's 'telling not showing' statement (do as I say, not as I do) MAY be a 'correct' statement:
1) it is so "I" oriented
2) it is totally selfish
3) it is me, me, me
It would matter LITTLE to me that friends, mates, loved ones, co-workers, neighbors, relatives, etc. not smoke, drink, or do drugs. (Though these are all admirable traits.)
What WOULD matter to me was that people legitimately made an effort in their lives to NOT lie, cheat, or steal. That they believed (no matter any religion or not) in 'do unto others'.
It WOULD matter to me that they had integrity, manners, knew how to read and write and knew where Iraq was!
So, in today's American culture you are an upstanding citizen if you don't smoke, drink, or do drugs. BUT you can embezzle from you employer, not bother to check on an elderly neighbor, cheat on your mate, not bother to vote, not respect your parents and elders, or lie on your tax return???
No wonder we're in trouble...
Saturday, July 24, 2004
Defining Fatigue
The word 'fatigue' should have a different name and definition. It is commonly used interchangeable with: wiped out, tired, worn out, sleepy, sleep deprived, etc.
And it is NONE of those things and all of them!
How I now describe Fatigue to people:
Suppose you got up one morning and evaluated the day before you. You made an actual detailed 'list' of everything, and I mean literally, every little thing, you were going to do today.
Your list might start out looking something like this for your morning:
And it is NONE of those things and all of them!
How I now describe Fatigue to people:
Suppose you got up one morning and evaluated the day before you. You made an actual detailed 'list' of everything, and I mean literally, every little thing, you were going to do today.
Your list might start out looking something like this for your morning:
make coffee
feed the cat
drink a cup of coffee
watch the morning news on TV
fix breakfast
eat breakfast
pick up after breakfast
take meat for dinner out of freezer
scoop the catpan
shower
brush your teeth
floss your teeth
get dressed
Well, if you are suffering from Severe Fatigue, you automatically have to scratch OUT half this list!!! You will not be able to complete these activities (well perhaps if that's ALL you did for the whole day!). So WHICH 6 - 7 items on this list will you NOT DO???
So then you're list might look like this (yet take up the same or more time!):
make coffee
feed the cat
drink a cup of coffee
watch the morning news on TV
fix breakfast
eat breakfast
take meat for dinner out of freezer
scoop the catpan
brush your teeth
get dressed
And if the Fatigue is REALLY bad, your morning might look like this:
make coffee
feed the cat
scoop the catpan
wash your face and hands
brush your teeth
THIS IS SEVERE FATIGUE; and you might even have to rest or lie down BETWEEN each of these activities. Or do them in stages or steps!
So you see why I think the word 'FATIGUE' as it is used today does not begin to define this state of being...
Thursday, July 22, 2004
Relapse
Fatigue. I've been feeling it gradually creep up on me during the last few weeks; have observer how it changes me and my lifestyle in an almost clinical manner.
But in the past few days, it's really crashed in on me.
I have to lie down SEVERAL times a day now. Can't complete even short, simple tasks without resting. If I push myself, I get SO TIRED, that I'm reduced to tears. Then there are the heart palpitations, shortness of breath, increased balance problems, and of course, my Blood Glucose goes really wacky.
Gross as it sounds, and as gross as it is, I have to report that I am not showering often, nor changing my clothes, nor cooking, nor doing much housework. Just don't have the energy.
I have enough energy to take care of the kittens, fix something to eat once in awhile (sandwiches & chips!), check my email, read the TV Guide, and use the remote...
I am ANGRY! Angry and frustrated beyond belief.
I'm only suffering this 'relapse' because Medicare/Medical STILL hasn't come through with repairs/replacement of my wheelchair. Therefore, I'm MISSING all my medical appointments!
Why should I have to SUFFER more than I already have because some bureaucrat (who has the energy to sit up in a chair behind a desk) is not doing his/her job???
Why should I put my life on 'hold' again??? I was just barely starting to rebuild it!
Tell me, WHY???
But in the past few days, it's really crashed in on me.
I have to lie down SEVERAL times a day now. Can't complete even short, simple tasks without resting. If I push myself, I get SO TIRED, that I'm reduced to tears. Then there are the heart palpitations, shortness of breath, increased balance problems, and of course, my Blood Glucose goes really wacky.
Gross as it sounds, and as gross as it is, I have to report that I am not showering often, nor changing my clothes, nor cooking, nor doing much housework. Just don't have the energy.
I have enough energy to take care of the kittens, fix something to eat once in awhile (sandwiches & chips!), check my email, read the TV Guide, and use the remote...
I am ANGRY! Angry and frustrated beyond belief.
I'm only suffering this 'relapse' because Medicare/Medical STILL hasn't come through with repairs/replacement of my wheelchair. Therefore, I'm MISSING all my medical appointments!
Why should I have to SUFFER more than I already have because some bureaucrat (who has the energy to sit up in a chair behind a desk) is not doing his/her job???
Why should I put my life on 'hold' again??? I was just barely starting to rebuild it!
Tell me, WHY???
Sunday, July 18, 2004
Donna Carter Cook
This afternoon I finally mourned the loss of my only older sister, Donna. She died of Primary Liver Cancer at age 59.
I assumed she had passed on; a cousin had told me that Donna had been placed in Hospice, and that her daughter was arriving from out of state.
After that, I heard nothing, though I left phone messages with the cousin, and two other half-siblings, they did not return my calls.
Today, being for me, a non-work day; I spent some time surfing the net. I checked the Social Security Death Records, and her name was there. She died in 2003, it didn't give the month or date. Guess I need to send for a copy of her death certificate. I have of copy of her birth certificate...
It was a beautiful sunny afternoon. So I went out on my scooter; found a secluded place in the complex, and remembered my sister.
Pictures of her at various stages of her life flashed through my mind in kaleidoscope fashion: her beautiful brown eyes, the skinny little girl, her haughtiness at having a boy friend who drove an MG when we were teens, how proud she was of her first daughter, how fascinated she was with the creatures at the Zoo, her ability with numbers. I remembered how we fought as children, always at odds with each other. I remembered how she secretly sucked her thumb well into adulthood, how she couldn't get ready to go anywhere without hairspray, and how she liked a cup of hot cocoa before bed.
I hadn't seen Donna for ten years prior to her death. She had married again, and was happy. (When she was involved with a man, there was nothing else in her world. I'd always wondered the why of that, and we'd even talked about it, without either of us ever understanding the phenomena.) But because we didn't see each other didn't mean we weren't in touch every few years.
Because of my own illness, and the miles between us; I was unable to see Donna before she passed on. This was something that really bothered me as I sat alone on my scooter in the sunshine of the afternoon and contemplated how my life had changed with her passing. She was the first of the 8 half-siblings, the first of my generation of family, to leave this world.
And I really have nothing physical of her to 'keep'. I wouldn't even begin to know how to contact her husband. Thankfully, I DO have albums full of pictures; from all stages of our lives. Though I will never need a picture to remember Donna.
I sat there, in the sun, for a long time. Alone, I watched the breeze play in the trees, watched two butterflies chase each other over the lush grass, and cried and cried.
I can only hope that she knows how much I love her, valued her as a sister. I think she does.
I assumed she had passed on; a cousin had told me that Donna had been placed in Hospice, and that her daughter was arriving from out of state.
After that, I heard nothing, though I left phone messages with the cousin, and two other half-siblings, they did not return my calls.
Today, being for me, a non-work day; I spent some time surfing the net. I checked the Social Security Death Records, and her name was there. She died in 2003, it didn't give the month or date. Guess I need to send for a copy of her death certificate. I have of copy of her birth certificate...
It was a beautiful sunny afternoon. So I went out on my scooter; found a secluded place in the complex, and remembered my sister.
Pictures of her at various stages of her life flashed through my mind in kaleidoscope fashion: her beautiful brown eyes, the skinny little girl, her haughtiness at having a boy friend who drove an MG when we were teens, how proud she was of her first daughter, how fascinated she was with the creatures at the Zoo, her ability with numbers. I remembered how we fought as children, always at odds with each other. I remembered how she secretly sucked her thumb well into adulthood, how she couldn't get ready to go anywhere without hairspray, and how she liked a cup of hot cocoa before bed.
I hadn't seen Donna for ten years prior to her death. She had married again, and was happy. (When she was involved with a man, there was nothing else in her world. I'd always wondered the why of that, and we'd even talked about it, without either of us ever understanding the phenomena.) But because we didn't see each other didn't mean we weren't in touch every few years.
Because of my own illness, and the miles between us; I was unable to see Donna before she passed on. This was something that really bothered me as I sat alone on my scooter in the sunshine of the afternoon and contemplated how my life had changed with her passing. She was the first of the 8 half-siblings, the first of my generation of family, to leave this world.
And I really have nothing physical of her to 'keep'. I wouldn't even begin to know how to contact her husband. Thankfully, I DO have albums full of pictures; from all stages of our lives. Though I will never need a picture to remember Donna.
I sat there, in the sun, for a long time. Alone, I watched the breeze play in the trees, watched two butterflies chase each other over the lush grass, and cried and cried.
I can only hope that she knows how much I love her, valued her as a sister. I think she does.
Saturday, July 17, 2004
Out & About Again
I went to Long's Drugs today! All by myself! It's probably been over three month's since I've done this! Far, far too long...
The afternoon was warm and sunny. Lot's of people were out and about, including me! I had a smile on my face for everyone I came in contact with!
My scooter and it's batteries worked without a hitch.
Once inside Long's, I slowly went up and down ALL the aisles, one by one, picking up a few things to purchase, but mainly just looking. What was new, what was gone, what had been rearranged; I took it all in, literally like a kid in a toy store...
Then came the best part of my 'trip'.
When I left Long's, I crossed another huge intersection, went a couple of blocks further down the street, to the Golden Arches! I'd had no fast food for ages..
Surprisingly, it was crowded, even though it was well past lunch time, and not yet dinner time. Which was a good thing, because I needed time to decide exactly what I wanted. And, oh, it smelled so very good in there...
I ordered enough food (to go) for two night's worth of dinners. Then, because they'd installed 'push' openers on their doors since I'd last been there, I was able to exit the restaurant without help from anyone.
The smell of the french fries wafted back to me from where the sacks were stashed in my front basket, all the way home...
The afternoon was warm and sunny. Lot's of people were out and about, including me! I had a smile on my face for everyone I came in contact with!
My scooter and it's batteries worked without a hitch.
Once inside Long's, I slowly went up and down ALL the aisles, one by one, picking up a few things to purchase, but mainly just looking. What was new, what was gone, what had been rearranged; I took it all in, literally like a kid in a toy store...
Then came the best part of my 'trip'.
When I left Long's, I crossed another huge intersection, went a couple of blocks further down the street, to the Golden Arches! I'd had no fast food for ages..
Surprisingly, it was crowded, even though it was well past lunch time, and not yet dinner time. Which was a good thing, because I needed time to decide exactly what I wanted. And, oh, it smelled so very good in there...
I ordered enough food (to go) for two night's worth of dinners. Then, because they'd installed 'push' openers on their doors since I'd last been there, I was able to exit the restaurant without help from anyone.
The smell of the french fries wafted back to me from where the sacks were stashed in my front basket, all the way home...
Monday, July 12, 2004
Overdone
I'm wiped out today. Over did it yesterday; out with the scooter and all...
It's been two or more months since my last visit with the Hematologist and a Therapeutic Phlebotomy, so the iron is probably building up in me again. (I've been having to lie down for awhile to rest most afternoons again.) But this can eventually be 'fixed' when I can get back to keeping my medical appointments, and it was most definitely worth it!
I did 'rearrange' my 'furniture' today; put the non-working wheel chair in the bedroom corner, installed the working Rascal scooter in the Living Room. It's easier to get it in and out of the apartment from there. And I was hoping it would be someplace comfortable to sit to watch TV or read (NOT!).
I also watched closely for the neighbors that will check my scooter tires for me and install air with my bicycle pump (something I can no longer do myself because of the arthritis in my thumbs and wrists; there's much to be said for those 'solid' tires, like the ones on my wheelchair!), but there was no sign of them. Perhaps tomorrow!
It's been two or more months since my last visit with the Hematologist and a Therapeutic Phlebotomy, so the iron is probably building up in me again. (I've been having to lie down for awhile to rest most afternoons again.) But this can eventually be 'fixed' when I can get back to keeping my medical appointments, and it was most definitely worth it!
I did 'rearrange' my 'furniture' today; put the non-working wheel chair in the bedroom corner, installed the working Rascal scooter in the Living Room. It's easier to get it in and out of the apartment from there. And I was hoping it would be someplace comfortable to sit to watch TV or read (NOT!).
I also watched closely for the neighbors that will check my scooter tires for me and install air with my bicycle pump (something I can no longer do myself because of the arthritis in my thumbs and wrists; there's much to be said for those 'solid' tires, like the ones on my wheelchair!), but there was no sign of them. Perhaps tomorrow!
Sunday, July 11, 2004
Bailed Out!
I finally got OUT of this apartment! After TEN weeks of almost total confinement; 'jailed' just for lack of mobility equipment...
(Still haven't heard a yea or nay on wheelchair repairs/replacement.)
A friend purchased two new batteries for my 9 year old Rascal Scooter, and installed 'em. (Bless his heart!)
I can't get on the transit bus with it, it's too large, a big four-wheeler. So I still can't get to doc appointments, but I sure can get around the neighborhood now! I can get my own mail, even on a day when my 'provider' isn't scheduled. I can go sit by the pool, read, and soak up some sun. I can go to Famosa Slough and feed the ducks. And I can go shopping!
The scooter had to charge overnight though I was so tempted to go out on West Point Loma at 3AM to watch the sparse traffic and enjoy the night, something I do once in awhile. I restrained myself, feeling I needed to check out the scooter in daylight at first.
The next day; I was outta here! The old scooter ran well, even though I assume the tires probably needed air.
I stayed inside the complex. Till the gel batteries are charged 2 - 3 times, I won't get 'full performance'. But I was 'out & about' for over two hours. An absolute joy!
It was a beautiful afternoon, warm and sunny. People were out doing all kinds of stuff: washing cars, cleaning patios, moving in, kids played, some folks were in the pool, one family was grilling on their patio.
I soaked it all in like a drowning person gulps for air. And I took 'clippings' for three new plants. I didn't run into anyone I know, and that's unusual, but I was OUT.
Soon as the batteries are at full functioning AND I get someone to check the tires (a neighbor in the next day or two); I'm off to Long's Drugstore! Something I'm as excited about as someone else is their trip to Europe!
(Still haven't heard a yea or nay on wheelchair repairs/replacement.)
A friend purchased two new batteries for my 9 year old Rascal Scooter, and installed 'em. (Bless his heart!)
I can't get on the transit bus with it, it's too large, a big four-wheeler. So I still can't get to doc appointments, but I sure can get around the neighborhood now! I can get my own mail, even on a day when my 'provider' isn't scheduled. I can go sit by the pool, read, and soak up some sun. I can go to Famosa Slough and feed the ducks. And I can go shopping!
The scooter had to charge overnight though I was so tempted to go out on West Point Loma at 3AM to watch the sparse traffic and enjoy the night, something I do once in awhile. I restrained myself, feeling I needed to check out the scooter in daylight at first.
The next day; I was outta here! The old scooter ran well, even though I assume the tires probably needed air.
I stayed inside the complex. Till the gel batteries are charged 2 - 3 times, I won't get 'full performance'. But I was 'out & about' for over two hours. An absolute joy!
It was a beautiful afternoon, warm and sunny. People were out doing all kinds of stuff: washing cars, cleaning patios, moving in, kids played, some folks were in the pool, one family was grilling on their patio.
I soaked it all in like a drowning person gulps for air. And I took 'clippings' for three new plants. I didn't run into anyone I know, and that's unusual, but I was OUT.
Soon as the batteries are at full functioning AND I get someone to check the tires (a neighbor in the next day or two); I'm off to Long's Drugstore! Something I'm as excited about as someone else is their trip to Europe!
Monday, July 05, 2004
Three Day Week-Ends
Still one more 3 day week-end. Though my formal 'working' days are long over; I can't help feeling regret that I didn't get to reap the benefit of so many long week-ends.
Now these 'holiday' week-ends can run on forever for me. Sometimes they aren't too bad if:
This week-end, none of those circumstances occurred (well, I did have books to read).
It is REALLY tough though, not to even be able to get out in the sun, or go to the laundry room, or mailbox.
I watch my neighbors as they come and go. They go out, get in their cars (I can remember having a car!), go someplace, return later with shopping bags. They walk up to the mailboxes, come back with their mail. Or they just take their trash out to the bins. They have company. They play with their kids. But I don't begrudge them; I used to do those things too.
This particular week-end is forever...
Now these 'holiday' week-ends can run on forever for me. Sometimes they aren't too bad if:
1) I can GO somewhere, even to Long's Drugs!
2) Someone actually visits.
3) There are great movies series, or marathons on TV.
4) I have sufficient food in the apartment.
5) I have library books to read.
This week-end, none of those circumstances occurred (well, I did have books to read).
It is REALLY tough though, not to even be able to get out in the sun, or go to the laundry room, or mailbox.
I watch my neighbors as they come and go. They go out, get in their cars (I can remember having a car!), go someplace, return later with shopping bags. They walk up to the mailboxes, come back with their mail. Or they just take their trash out to the bins. They have company. They play with their kids. But I don't begrudge them; I used to do those things too.
This particular week-end is forever...
Friday, July 02, 2004
That's Entertainment- Almost!
I was almost ready for bed. Getting nice and sleepy. Then some movement caught my eye...
Rushing past my window at 2AM were three uniformed cops. The one point had his hand on his gun!!!
Well, I was instantly awake!
I hadn't heard a thing; all was quiet in my part of 'THE COVES' anyway.
These cops were not running, not even jogging. But they were walking at a fast clip. They were not checking the addressed on the patios or buildings, seemed to know where they were going.
They were only in my line of site vision a few seconds; but long enough for me to see that Officers right hand on his gun!
All ideas of going to bed dissipated; instead I was wondering if I'd locked the door.
I went to where I could get a better view; no police cars in the parking area immediately in front of my apartment, no signs of where they had gone.
So I went out on the patio; still no sign of them.
Police here at the COVES are not a rarity, neither are they the usual thing. But when they do arrive; it's in force, usually in several cars that pull right into the parking area. I've not seen them do the 'stealth' thing before.
My curiosity went unfulfilled. Finally I did go to bed, but sleep didn't come, I kept looking out the window.
Frustration is often my way of life...
Rushing past my window at 2AM were three uniformed cops. The one point had his hand on his gun!!!
Well, I was instantly awake!
I hadn't heard a thing; all was quiet in my part of 'THE COVES' anyway.
These cops were not running, not even jogging. But they were walking at a fast clip. They were not checking the addressed on the patios or buildings, seemed to know where they were going.
They were only in my line of site vision a few seconds; but long enough for me to see that Officers right hand on his gun!
All ideas of going to bed dissipated; instead I was wondering if I'd locked the door.
I went to where I could get a better view; no police cars in the parking area immediately in front of my apartment, no signs of where they had gone.
So I went out on the patio; still no sign of them.
Police here at the COVES are not a rarity, neither are they the usual thing. But when they do arrive; it's in force, usually in several cars that pull right into the parking area. I've not seen them do the 'stealth' thing before.
My curiosity went unfulfilled. Finally I did go to bed, but sleep didn't come, I kept looking out the window.
Frustration is often my way of life...
Friday, June 25, 2004
Neighbors (???)
A new next door neighbor, here in the 'fishbowl' has actually complained to the Management of the apartment complex about the noise my electric hospital bed makes at night.
Of course the new neighbor does not know it's a hospital bed making the noise that apparently disturbs his/her sleep. The complaint to the management was that I 'ran machines and played the TV all night".
I received a letter from the management. I got in touch with her and let her know about the hospital bed. And told her I did listen to talk radio at night, but kept the volume down. I also reminded her that I'd lived here almost 5 years and no one had made such a complaint before!
She said to make sure I kept the radio audio turned down as 'the walls are thin' and that of course, there was nothing I could do about the bed.
I thought it was bad enough to be sick, alone, sleepless, and worried about various things.
It wasn't! Now I also worry about how loud my talk radio is (I can't afford an under the pillow speaker), and if my bedroom window is open and how far the noise will travel.
Worse yet; I allow myself to become VERY uncomfortable, or IN PAIN, before I change the position of my head or foot settings, not wanting to bother a neighbor.
This seems to be of no avail. Every time I adjust my bed during the night, this person, this stranger, actually POUNDS on the walls, no matter the time! Which of course surely is heard throughout the building and disturbs still more people (though it doesn't bother me, as I am awake already)!
I'm really sorry I'm disturbing this person's sleep! And I've tried to correct the problem to the best of my ability.
What I'd REALLY like to do is leave a note on his/her door saying: I was a 'night worker' for over 20 years! I didn't expect the children to stop playing or the world to go on 'pause' while I slept during the day. I got a sleep mask, a sign for the door, and EARPLUGS. I suggest YOU do the same!!!
Maybe if I did that, ONE of us would sleep better!
Of course the new neighbor does not know it's a hospital bed making the noise that apparently disturbs his/her sleep. The complaint to the management was that I 'ran machines and played the TV all night".
I received a letter from the management. I got in touch with her and let her know about the hospital bed. And told her I did listen to talk radio at night, but kept the volume down. I also reminded her that I'd lived here almost 5 years and no one had made such a complaint before!
She said to make sure I kept the radio audio turned down as 'the walls are thin' and that of course, there was nothing I could do about the bed.
I thought it was bad enough to be sick, alone, sleepless, and worried about various things.
It wasn't! Now I also worry about how loud my talk radio is (I can't afford an under the pillow speaker), and if my bedroom window is open and how far the noise will travel.
Worse yet; I allow myself to become VERY uncomfortable, or IN PAIN, before I change the position of my head or foot settings, not wanting to bother a neighbor.
This seems to be of no avail. Every time I adjust my bed during the night, this person, this stranger, actually POUNDS on the walls, no matter the time! Which of course surely is heard throughout the building and disturbs still more people (though it doesn't bother me, as I am awake already)!
I'm really sorry I'm disturbing this person's sleep! And I've tried to correct the problem to the best of my ability.
What I'd REALLY like to do is leave a note on his/her door saying: I was a 'night worker' for over 20 years! I didn't expect the children to stop playing or the world to go on 'pause' while I slept during the day. I got a sleep mask, a sign for the door, and EARPLUGS. I suggest YOU do the same!!!
Maybe if I did that, ONE of us would sleep better!
Wednesday, June 23, 2004
HH, My Story!
In the fall of 2002, my older sister, Donna Carter Cook, called to tell me she was dying of primary liver cancer. I was unbelieving; she was only 59, had not been a drinker, had not had hepatitis... She has since died.
CONCOMITANTLY, my own doctors (specialists all!), concerned about my gradually rising Hemoglobin and Hematacrit values, (with MUCH coercion!) finally ordered specific tests (in order): complete pulmonary function/negative, TIBC/some questionable (but not overly HIGH) values, and lastly DNA tests for HH. The DNA came back positive for the HH genes; I was Compound Heterozygous for both C282Y/H63D mutations. Compound Heterozygosity! I don't know who was more surprised; me or the 'doubting' doc! SUDDENLY, my world came into focus. A legitimate medical REASON had been found for most of my ills!
I was NOT a hypochondriac! I was NOT lazy (well, not very!). I was NOT an attention seeking nut!!! I was NOT suffering a forever clinical depression! A weight was lifted from me; all that internal questioning, self-doubt, and blame. (One of days I'm gonna send a letter to each of those docs who so blithely gave me the brush off over the years!)TODAY, many docs are uneducated as to 'genetic' disorders, specifically IRON genetic disorders, that even with the DNA tests in hand, they refuse, or choose, not to believe! I guide them towards 'resources', then find another, more sympathetic and interested, doc!
My own DIAGNOSIS of Hereditary Hemochromatosis came too late to prevent many of the 'complications' of HH that I suffer from though further damage might be prevented with treatment, simple treatment! Therapeutic Phlebotomies! (Perhaps even further cancers or recurrences could be staid off...)
DIAGNOSIS & TREATMENT did bring a gradual 'lifting' of the terrible, fatigue. By the time I was diagnosed I spent most of my time in bed. Not because I wanted to, but because I had no choice. I didn't lie there and read; I lay there like a log. If my head itched, I was literally too tired to raise my hand to scratch it. I'd actually gotten to the point where I thought I was just going to lay there and die from tired. Yet the docs could find nothing wrong! I took consolation in that perhaps an autopsy would find the answer...UNLIKE the HH literature indicates; that symptoms don't appear till mid-life; I'd suffered from varying degrees of fatigue, joint pain and muscle weakness since early childhood. (Research continues and 'modifying' genes are being identified.)
With treatment, the pall of fatigue GRADUALLY started lifting as my Hemoglobin and Hematacrit lowered. I like to think that my blood sugars are now easier to control (insulin), but that probably isn't the case. The Arthralgia remains unchanged.
I am out of bed all day! I get dressed and comb my hair every day! I can shower daily! And I have plans for a future 'active' life! Miracles happen!
SO, if you have physical symptoms that have gone 'unexplained', if all the tests come back 'negative', don't give up HOPE of finding an answer and perhaps even treatment!
Get a different doc. And still another doc! Have the tests repeated and repeated again. Look towards 'rare' disorders and conditions. Do research on the web! Join all the 'lists' of folks with similar symptoms. Ask questions! If I hadn't done all this, I'd probably be 'dead' in my bed from 'tired' by now...
CONCOMITANTLY, my own doctors (specialists all!), concerned about my gradually rising Hemoglobin and Hematacrit values, (with MUCH coercion!) finally ordered specific tests (in order): complete pulmonary function/negative, TIBC/some questionable (but not overly HIGH) values, and lastly DNA tests for HH. The DNA came back positive for the HH genes; I was Compound Heterozygous for both C282Y/H63D mutations. Compound Heterozygosity! I don't know who was more surprised; me or the 'doubting' doc! SUDDENLY, my world came into focus. A legitimate medical REASON had been found for most of my ills!
I was NOT a hypochondriac! I was NOT lazy (well, not very!). I was NOT an attention seeking nut!!! I was NOT suffering a forever clinical depression! A weight was lifted from me; all that internal questioning, self-doubt, and blame. (One of days I'm gonna send a letter to each of those docs who so blithely gave me the brush off over the years!)TODAY, many docs are uneducated as to 'genetic' disorders, specifically IRON genetic disorders, that even with the DNA tests in hand, they refuse, or choose, not to believe! I guide them towards 'resources', then find another, more sympathetic and interested, doc!
My own DIAGNOSIS of Hereditary Hemochromatosis came too late to prevent many of the 'complications' of HH that I suffer from though further damage might be prevented with treatment, simple treatment! Therapeutic Phlebotomies! (Perhaps even further cancers or recurrences could be staid off...)
DIAGNOSIS & TREATMENT did bring a gradual 'lifting' of the terrible, fatigue. By the time I was diagnosed I spent most of my time in bed. Not because I wanted to, but because I had no choice. I didn't lie there and read; I lay there like a log. If my head itched, I was literally too tired to raise my hand to scratch it. I'd actually gotten to the point where I thought I was just going to lay there and die from tired. Yet the docs could find nothing wrong! I took consolation in that perhaps an autopsy would find the answer...UNLIKE the HH literature indicates; that symptoms don't appear till mid-life; I'd suffered from varying degrees of fatigue, joint pain and muscle weakness since early childhood. (Research continues and 'modifying' genes are being identified.)
With treatment, the pall of fatigue GRADUALLY started lifting as my Hemoglobin and Hematacrit lowered. I like to think that my blood sugars are now easier to control (insulin), but that probably isn't the case. The Arthralgia remains unchanged.
I am out of bed all day! I get dressed and comb my hair every day! I can shower daily! And I have plans for a future 'active' life! Miracles happen!
SO, if you have physical symptoms that have gone 'unexplained', if all the tests come back 'negative', don't give up HOPE of finding an answer and perhaps even treatment!
Get a different doc. And still another doc! Have the tests repeated and repeated again. Look towards 'rare' disorders and conditions. Do research on the web! Join all the 'lists' of folks with similar symptoms. Ask questions! If I hadn't done all this, I'd probably be 'dead' in my bed from 'tired' by now...
Tuesday, June 22, 2004
IP's, even MORE red tape... (Thanks Arnold!)
My state, county, pays for a certain number of hours per month for specific aged and/or disabled people to have the 'help' they need to stay independent.
This CAN include, depending on your needs: laundry, general housework, help with personal hygiene, shopping, cooking, general errands, and medical transportation.
In itself, this is a great and good concept, but the program itself is set up on a 30, or more, year old model. AND to top it off, was really set up to 'compensate' relatives who care for the disabled of any age, with a pittance.
I am currently 'assessed' to receive 12 hours a week in services. Which roughly breaks down to three 4 hour sessions per week.
The 'tasks' I'm approved for include: shopping, errands, laundry, food preparation, general housework, and shower/dressing help.
The problems are:
1) Few if any people want to do this work, even as a part-time extra job. If you don't have a willing relative (and many of us do not), good luck in finding someone reputable to hire, even it they don't speak, read, write your language.
2) The pay is minimal. There are NO perks (like mileage, vacations, sick leave, etc) for the caregiver. Not only are all the routine deductions made from the caregiver's check, BUT mandatory MONTHLY union dues are deducted, even if only 2 hours are worked that month!
3) Many of the services are DUPLICATES of services now available in the community, through companies/corporations that really do it better (and probably cheaper). But we, as recipients, are not allowed these choices.
These well meaning, government services for the aged/disabled REALLY ought to come into the tech society so that people's needs are better met, and their budgets would probably be reduced GREATLY.
Recently, there have been MAJOR budget cut-backs in our state. Many of these programs have been drastically reduced (Thanks Arnold!). And I foresee that many people who could remain independent with just this little bit of help, will end up in 'nursing' homes (that CAN NOT pass state or federal inspections), where they don't belong and wont be happy, and the state will be saving a few bucks on one side and paying out a fortune on the other...
And, by the way, I feel that Adult Children should be BILLED for a portion of these services to their parents if they choose not to help provide for them!!!
BUT is this what America is about - making the sick and elderly pay the bill???
This CAN include, depending on your needs: laundry, general housework, help with personal hygiene, shopping, cooking, general errands, and medical transportation.
In itself, this is a great and good concept, but the program itself is set up on a 30, or more, year old model. AND to top it off, was really set up to 'compensate' relatives who care for the disabled of any age, with a pittance.
I am currently 'assessed' to receive 12 hours a week in services. Which roughly breaks down to three 4 hour sessions per week.
The 'tasks' I'm approved for include: shopping, errands, laundry, food preparation, general housework, and shower/dressing help.
The problems are:
1) Few if any people want to do this work, even as a part-time extra job. If you don't have a willing relative (and many of us do not), good luck in finding someone reputable to hire, even it they don't speak, read, write your language.
2) The pay is minimal. There are NO perks (like mileage, vacations, sick leave, etc) for the caregiver. Not only are all the routine deductions made from the caregiver's check, BUT mandatory MONTHLY union dues are deducted, even if only 2 hours are worked that month!
3) Many of the services are DUPLICATES of services now available in the community, through companies/corporations that really do it better (and probably cheaper). But we, as recipients, are not allowed these choices.
SHOPPING: My pharmacy delivers for free. My wheelchair service folks come here. I use a 'Mobile Physician' that comes here for my Primary Medical Care.
And I now do all my grocery/household shopping on line. I get exactly what I want for a small delivery fee. Which is not reimbursed to me, nor is the 'time' deducted from the IP's hours!
HOUSECLEANING: I'd much rather have a professional service, trained folks, come in and do this, even it it were not so often. There are many, many companies out there who'd love to have the work!
LAUNDRY: BUY me an apartment sized washer and dryer and I can do my own laundry! And there are still 'fluff & fold' pick up and delivery services available.
MEDICAL TRANSPORTATION: We now have public Disabled Transit that will take us anywhere AT any time (NOT just during the time an IP might be scheduled to work). Curb to Curb service. Wheelchair accessible. Cost $10 round trip. Again, this would be cheaper for the county (on a limited basis) and much more workable for those of us trying to keep medical appointments. But we are not given this option. We all USE this service, but are not in any way reimbursed, nor can we get monthly 'tickets' instead of the scheduled 'medical transportation' hours!
FOOD PREPARATION: Give me that $$$ and I'll order more 'frozen' foods and individual serving canned fruits & veggies from the online grocer!
Not to mention restaurants that deliver, or a neighbor that would not mind going by a Fast Food place once in awhile.
There is only me: I don't have a great need for a Dutch Oven full of rice or stew or soup. Then too, there is MEALS ON WHEELS, but that costs $8 DAY here if you are not over 65, no matter HOW disabled you are!
These well meaning, government services for the aged/disabled REALLY ought to come into the tech society so that people's needs are better met, and their budgets would probably be reduced GREATLY.
Recently, there have been MAJOR budget cut-backs in our state. Many of these programs have been drastically reduced (Thanks Arnold!). And I foresee that many people who could remain independent with just this little bit of help, will end up in 'nursing' homes (that CAN NOT pass state or federal inspections), where they don't belong and wont be happy, and the state will be saving a few bucks on one side and paying out a fortune on the other...
And, by the way, I feel that Adult Children should be BILLED for a portion of these services to their parents if they choose not to help provide for them!!!
BUT is this what America is about - making the sick and elderly pay the bill???
Sunday, June 20, 2004
Bread & Butter Pickles
Twice a month I order groceries (and related household items)from www.albertson.com.
They are delivered the next day.
Thank heavens for this relatively new online service! For without them, what would the sick/disabled do??? Not only do I have a complete online selection of routine and usual items, but they only charge me $10 for the delivery. (I'm sure THAT will increase with the gasoline prices.)
Currently, my power wheelchair is awaiting approval for repairs; I can not take it to the local stores. And the current housekeeper will not take me anywhere in her car! (Both these things will be changing eventually!)
But I digress! I LOVE grocery day! Buy the time I order, I am likely to be OUT of several necessities.
Not to mention the 'extras'. Like today I recieved a jar of Bread and Butter Pickles, something I haven't had for years, shouldn't have spent the $1.99 on now, but just had a 'taste' for 'em, and couldn't resist.
Once I'd decided to get some pickes, I had a difficult time deciding between Dills and Bread & Butter. It's been so long since I've had either! I finally opted for the Bread & Butter slices.
I think it's so sad that the aged, disabled, ill in America can't afford pickles! But, let's send some more BILLIONS to rebuild Iraq this month!!!
They are delivered the next day.
Thank heavens for this relatively new online service! For without them, what would the sick/disabled do??? Not only do I have a complete online selection of routine and usual items, but they only charge me $10 for the delivery. (I'm sure THAT will increase with the gasoline prices.)
Currently, my power wheelchair is awaiting approval for repairs; I can not take it to the local stores. And the current housekeeper will not take me anywhere in her car! (Both these things will be changing eventually!)
But I digress! I LOVE grocery day! Buy the time I order, I am likely to be OUT of several necessities.
Not to mention the 'extras'. Like today I recieved a jar of Bread and Butter Pickles, something I haven't had for years, shouldn't have spent the $1.99 on now, but just had a 'taste' for 'em, and couldn't resist.
Once I'd decided to get some pickes, I had a difficult time deciding between Dills and Bread & Butter. It's been so long since I've had either! I finally opted for the Bread & Butter slices.
I think it's so sad that the aged, disabled, ill in America can't afford pickles! But, let's send some more BILLIONS to rebuild Iraq this month!!!
Saturday, June 19, 2004
Peas & Carrots
My dinner was almost ready. The white plate was sitting on the stove awaiting the placement of the last item: peas & carrots.
I eyed the food hungrily but resisted temptation to take a bite. Just then the microwave dinged and I opened it to retrieve the container with last night's reheated veggie.
But my attention still must have been focused on the plate with the food already on it; I reached in for the peas & carrots, slid the container out, and somehow managed to slide it right off the counter!
It tipped right into my body, much of it's contents sliding on down to the kitchen floor. Luckily, I'd drained the veggies well BEFORE nuking them, so I had little or no liquid to deal with. Just peas & carrots.
A fast grab saved the entire container from hitting the floor. I carefully evaluated the remaining contents to see if there was enough left for dinner. There was. I scooped 'em out onto the plate.
Then I made the fateful decision; clean the floor now, or clean it after eating. Well, I was hungry!
After a leisurely, and good, may I add, meal. I took my plate, glass, and other stuff into the kitchen. I was fully prepared to clean up the peas & carrots from the floor in front of the microwave as soon as I washed my dishes.
Except there was no longer a little pile of peas & carrots. There was a pile of squarish bright yellow carrots. The peas had traveled all over the floor! In fact, they were traveling as I watched, dirty dishes in hand.
Lucy & Ethel, my kittens, had discovered a zany fact of life, peas roll!
It took me 2 minutes to wash my dishes, being careful to not step on a stray pea. It took me half and hour to separate the kittens from the peas, gather all the peas, and mop the floor.
When bedtime came, as I drifted off for the night, I was wondering how many peas were under the refrigerator, stove, shelves, that I hadn't been able to find. And how long it would take them to shrivel and dry up. And what the crew who'd clean the apartment when I moved out, would think. I almost couldn't go to sleep because I was giggling...
I eyed the food hungrily but resisted temptation to take a bite. Just then the microwave dinged and I opened it to retrieve the container with last night's reheated veggie.
But my attention still must have been focused on the plate with the food already on it; I reached in for the peas & carrots, slid the container out, and somehow managed to slide it right off the counter!
It tipped right into my body, much of it's contents sliding on down to the kitchen floor. Luckily, I'd drained the veggies well BEFORE nuking them, so I had little or no liquid to deal with. Just peas & carrots.
A fast grab saved the entire container from hitting the floor. I carefully evaluated the remaining contents to see if there was enough left for dinner. There was. I scooped 'em out onto the plate.
Then I made the fateful decision; clean the floor now, or clean it after eating. Well, I was hungry!
After a leisurely, and good, may I add, meal. I took my plate, glass, and other stuff into the kitchen. I was fully prepared to clean up the peas & carrots from the floor in front of the microwave as soon as I washed my dishes.
Except there was no longer a little pile of peas & carrots. There was a pile of squarish bright yellow carrots. The peas had traveled all over the floor! In fact, they were traveling as I watched, dirty dishes in hand.
Lucy & Ethel, my kittens, had discovered a zany fact of life, peas roll!
It took me 2 minutes to wash my dishes, being careful to not step on a stray pea. It took me half and hour to separate the kittens from the peas, gather all the peas, and mop the floor.
When bedtime came, as I drifted off for the night, I was wondering how many peas were under the refrigerator, stove, shelves, that I hadn't been able to find. And how long it would take them to shrivel and dry up. And what the crew who'd clean the apartment when I moved out, would think. I almost couldn't go to sleep because I was giggling...
Friday, June 18, 2004
Time to get Down & Dirty?
I KNOW that many won't agree with me...
But I believe it's time to get hard-core, down and dirty, with the Saudis (and perhaps other Muslim country nationals?).
First, American civilians in Saudi Arabia should come home; cancel their passports and visa's! It is not safe for them there, (though they may believe otherwise) and the Saudi kingdom has proven to be unable to protect them.
Next, I think all visa's and passports should be revoked for the Saudis that are HERE. Send these people back to their own country to study, live, deal with their politics, extremists, and terrorists. Barring that, I think all Saudis living and working in America should be 'shunned' in the 'old fashioned' meaning of the term by Americans.
Now this may SEEM harsh and even un-American. Especially as most Saudis living and/or working in America PROBABLY have absolutely nothing to do with terrorism or the death of Paul Johnson.
BUT, these people obviously need to go HOME and take care of business! Perhaps our government, indeed, world governments, can not take such a severe stance. But, each and every one of us in our personal daily lives CAN.
We can each wage our own war on terrorism. Individually, we can choose how we act and react to these strangers living amongst us, these expatriates of Saudi Arabia (and other problematic countries). I urge each of you to take the small actions mentioned above in your everyday lives; without being cruel, certainly without any physical violence, when and if you can.
Perhaps if it's not so pleasant HERE for them, perhaps if we don't make it so EASY for them to remain here, they will return to their home countries, and take charge...
Just one mad poet's opinion!
But I believe it's time to get hard-core, down and dirty, with the Saudis (and perhaps other Muslim country nationals?).
First, American civilians in Saudi Arabia should come home; cancel their passports and visa's! It is not safe for them there, (though they may believe otherwise) and the Saudi kingdom has proven to be unable to protect them.
Next, I think all visa's and passports should be revoked for the Saudis that are HERE. Send these people back to their own country to study, live, deal with their politics, extremists, and terrorists. Barring that, I think all Saudis living and working in America should be 'shunned' in the 'old fashioned' meaning of the term by Americans.
Don't talk to them other than simple yes/no's.
Don't rent to them.
Don't sell them anything but basic necessities.
Don't socialize with them.
Don't employ them.
Now this may SEEM harsh and even un-American. Especially as most Saudis living and/or working in America PROBABLY have absolutely nothing to do with terrorism or the death of Paul Johnson.
BUT, these people obviously need to go HOME and take care of business! Perhaps our government, indeed, world governments, can not take such a severe stance. But, each and every one of us in our personal daily lives CAN.
We can each wage our own war on terrorism. Individually, we can choose how we act and react to these strangers living amongst us, these expatriates of Saudi Arabia (and other problematic countries). I urge each of you to take the small actions mentioned above in your everyday lives; without being cruel, certainly without any physical violence, when and if you can.
Perhaps if it's not so pleasant HERE for them, perhaps if we don't make it so EASY for them to remain here, they will return to their home countries, and take charge...
Just one mad poet's opinion!
Tuesday, June 08, 2004
The Kitty Project
In December of 2003, I lost my feline companion of 16 years, Bebe. I was devastated!
I cried for days; walked around in a fog for weeks. Then I started looking forward to 'kitty season' and finding some more feline companions.
Little did I know... Spaying & Neutering programs have been SO effective (thankfully!) in the city where I live, that finding kittens turned out to be a crusade of sorts. Even the local animal shelter only had adult cats and one kitten here and there! Since I wanted TWO KITTENS from the same litter, you'd have thought I was searching for the grail itself. I followed up every newspaper ad, every lead. Let all my friends and acquaintances know I was looking... I did find some kitties; ALL FOR SALE. Even the plain ole 'housecat' variety kittens cost a bundle. The price for ONE kitten ran the range of $30 to $125!!! The purebreds, Siamese, Persian, etc, were much more! I was ready, since I live close to the border, to send a friend to Mexico to get me some kittens! (Wonder if ya can bring THEM across the border?)
Then one day, a woman called me from out of the blue. Someone had given her my phone number. She worked with an Animal Rescue group and someone had left a cardboard box of 6 week old kittens on her porch the week before. Was I interested in two, for free??? You would think this would be the end of the story, but not! First of all, I had to undergo a 'home visit' (which I had to wait a week for!). I offered to give references, Vets, etc. But no, my home had to be 'checked'. This nice retired teacher came, checked out my apartment, and chatted with me. Would the cats be kept inside? (Yes.) Who would care for the cats if I were vacationing, in the hospital, or died (My adult daughter.) She was concerned about placing the kittens with me because I am a smoker! Would I be willing to smoke outside??? (No!) I told her I hadn't ever had a cat die from lung cancer and she got a little ticked. And I thought I'd missed my chance with those particular kittens...
Well, a few days later, she phoned again. She could bring me the two kittens early the next day (right!). Of course, I got everything ready. Set my alarm and got up early (I am a night person!). And she called and rescheduled for the NEXT day. But the next day, the same thing was repeated. Finally on Thursday June 3, 2004, (after noon, though I'd again gotten up early) she bought me two adorable 7 week old kittens. They seemed to be happy, healthy babies; no runny eyes, noses, though a touch on the thin side. The Rescue lady told me they had been defleaed, dewormed and checked by a vet.
I was enchanted; fell in love on sight. They were exact twins: female, tiny, very short hair, and totally black. I invited my friends in to meet them. I named them Lucy (the larger outgoing one) and Ethel (the smaller, shyer one). And my apartment didn't feel nearly as empty. The quest had been worth it! That was Thursday afternoon. By Friday night it was obvious they were ill, at least with eye infections. Yet they ate, slept, played, etc. So I was planning a visit to the vet the first of the next week, yet I wasn't really very concerned.
Over the week end; they both got more and more ill. I even thought they might have kitty fevers. I was starting to get worried... Yesterday MY vet saw them. They both have pneumonia AND eye infections, which of course, they probably contracted at the Rescue Facility...
They each had an injection of antibiotic and steroid. They each got prescriptions of oral antibiotics, high powered vitamins, and eye ointment. He warned me that they would probably get worse before they got better... Last night, I didn't get much sleep. One of them was so ill, I honestly thought it could die in it's sleep. But we all made it though that long night.
Today, they are not quite as lethargic. They have eaten well, took their meds. But no playing, no visiting, they eat, potty, then go back to their chosen 'bed' and sleep. I'm STILL worried, but knowing they ARE getting the proper meds, and that they are eating, not 'quite' as worried as last night. Still, might be a long night...
If you believe in 'prayer', keep these two little 'fur' babies in mind. They did not deserve this!
I cried for days; walked around in a fog for weeks. Then I started looking forward to 'kitty season' and finding some more feline companions.
Little did I know... Spaying & Neutering programs have been SO effective (thankfully!) in the city where I live, that finding kittens turned out to be a crusade of sorts. Even the local animal shelter only had adult cats and one kitten here and there! Since I wanted TWO KITTENS from the same litter, you'd have thought I was searching for the grail itself. I followed up every newspaper ad, every lead. Let all my friends and acquaintances know I was looking... I did find some kitties; ALL FOR SALE. Even the plain ole 'housecat' variety kittens cost a bundle. The price for ONE kitten ran the range of $30 to $125!!! The purebreds, Siamese, Persian, etc, were much more! I was ready, since I live close to the border, to send a friend to Mexico to get me some kittens! (Wonder if ya can bring THEM across the border?)
Then one day, a woman called me from out of the blue. Someone had given her my phone number. She worked with an Animal Rescue group and someone had left a cardboard box of 6 week old kittens on her porch the week before. Was I interested in two, for free??? You would think this would be the end of the story, but not! First of all, I had to undergo a 'home visit' (which I had to wait a week for!). I offered to give references, Vets, etc. But no, my home had to be 'checked'. This nice retired teacher came, checked out my apartment, and chatted with me. Would the cats be kept inside? (Yes.) Who would care for the cats if I were vacationing, in the hospital, or died (My adult daughter.) She was concerned about placing the kittens with me because I am a smoker! Would I be willing to smoke outside??? (No!) I told her I hadn't ever had a cat die from lung cancer and she got a little ticked. And I thought I'd missed my chance with those particular kittens...
Well, a few days later, she phoned again. She could bring me the two kittens early the next day (right!). Of course, I got everything ready. Set my alarm and got up early (I am a night person!). And she called and rescheduled for the NEXT day. But the next day, the same thing was repeated. Finally on Thursday June 3, 2004, (after noon, though I'd again gotten up early) she bought me two adorable 7 week old kittens. They seemed to be happy, healthy babies; no runny eyes, noses, though a touch on the thin side. The Rescue lady told me they had been defleaed, dewormed and checked by a vet.
I was enchanted; fell in love on sight. They were exact twins: female, tiny, very short hair, and totally black. I invited my friends in to meet them. I named them Lucy (the larger outgoing one) and Ethel (the smaller, shyer one). And my apartment didn't feel nearly as empty. The quest had been worth it! That was Thursday afternoon. By Friday night it was obvious they were ill, at least with eye infections. Yet they ate, slept, played, etc. So I was planning a visit to the vet the first of the next week, yet I wasn't really very concerned.
Over the week end; they both got more and more ill. I even thought they might have kitty fevers. I was starting to get worried... Yesterday MY vet saw them. They both have pneumonia AND eye infections, which of course, they probably contracted at the Rescue Facility...
They each had an injection of antibiotic and steroid. They each got prescriptions of oral antibiotics, high powered vitamins, and eye ointment. He warned me that they would probably get worse before they got better... Last night, I didn't get much sleep. One of them was so ill, I honestly thought it could die in it's sleep. But we all made it though that long night.
Today, they are not quite as lethargic. They have eaten well, took their meds. But no playing, no visiting, they eat, potty, then go back to their chosen 'bed' and sleep. I'm STILL worried, but knowing they ARE getting the proper meds, and that they are eating, not 'quite' as worried as last night. Still, might be a long night...
If you believe in 'prayer', keep these two little 'fur' babies in mind. They did not deserve this!
Wednesday, June 02, 2004
Ocean Beach where the living is easy!
Ocean Beach is a community of San Diego, California, Zip Code 92107 (a semi-famous zip code; poems and tee shirts have been done). Where Interstate 8 ends at the Pacific Ocean.
Ocean Beach is place where the new is mixed with the old. New condos and old, small, square, wood frame beach houses. Long boards and Boogie Boards. New antique shops and other stores that have been in business for many decades.
The denizens of OB also run the gamut. They range from the semi-affluent (who seem to have only recently found the place), to the poor (the elderly, new immigrants, the disabled), to the not so invisible homeless. Poets & Artists, craftspeople, surfers, shop owners, bikers, we all share the same small corner of San Diego.
The beach is small, western facing, and beautiful. The dogs even have their own beach! The pier is one of the longest & oldest in the country. There are tidepools and cliffs...
I found it twenty years ago, and fell in love with it.
It has been said that Ocean Beach is more of an attitude than a place.
Ocean Beach is place where the new is mixed with the old. New condos and old, small, square, wood frame beach houses. Long boards and Boogie Boards. New antique shops and other stores that have been in business for many decades.
The denizens of OB also run the gamut. They range from the semi-affluent (who seem to have only recently found the place), to the poor (the elderly, new immigrants, the disabled), to the not so invisible homeless. Poets & Artists, craftspeople, surfers, shop owners, bikers, we all share the same small corner of San Diego.
The beach is small, western facing, and beautiful. The dogs even have their own beach! The pier is one of the longest & oldest in the country. There are tidepools and cliffs...
I found it twenty years ago, and fell in love with it.
It has been said that Ocean Beach is more of an attitude than a place.
Tuesday, June 01, 2004
A Blog???
What's a blog???
I've spent some time researching this question. I've now read a goodly number of 'em, and I still don't know exactly what they are. Or more practically, how to 'blog'. (But I'm gonna do one anyway!)
I've even spent a lot of time finding 'blogging' services (free ones!), and compared what was offered. Then I tried some of them out. Finally (leave it to Google!), deciding on 'blogger' as offering what I needed in a 'blog'.
I have developed a vague idea of what I want to do (and why) with a 'blog':
More importantly, I know what I do NOT want my 'blog' to be:
I've spent some time researching this question. I've now read a goodly number of 'em, and I still don't know exactly what they are. Or more practically, how to 'blog'. (But I'm gonna do one anyway!)
I've even spent a lot of time finding 'blogging' services (free ones!), and compared what was offered. Then I tried some of them out. Finally (leave it to Google!), deciding on 'blogger' as offering what I needed in a 'blog'.
I have developed a vague idea of what I want to do (and why) with a 'blog':
- I want it to be first and foremost, readable
- I want it to 'share' my lifestyle
- I want to make a 'statement' regarding being sick and poor in America
- I want it to be honest
- I want to 'share' my life as a poet
- I want to create a column of sorts
- I want someplace to SAY the things I wish I had
- I want to explore my life; past & present
More importantly, I know what I do NOT want my 'blog' to be:
- I do not want some black background with unreadable text
- I do not want it to be graphics heavy (the 'word' is the thing)
- I do not want it to go unread
- I do not want it to be 'just personal angst'
- I do not want it to be wishy-washy; if folks get mad, oh well...
So, hold on to your socks folks; here we go!!!
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