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.
Tuesday, September 21, 2004
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.
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