Must tell you that when I was diagnosed, and diagnosed and diagnosed, with a million degenerative diseases and conditions, it was over time and it still takes all the time I have to try understanding it all. Nothing that I have will kill me--yay for me!--but on some days, because of what is going on in my neck, arms and hands, I could wish to be dead. (Just realized that I never do wish for death, only relief! and death is not the picture in my head when wishing. I'm so cool.)
The thing is, I got used to what I have and work around it, and after several years, with different things flaring and simmering back down, I still occasionally read all about the different things and what are the new treatments. Still talk to my docs about them. Still have to see the docs way more than regular folk.
But it's funny how friends, family and acquaintances view me and others with disabling conditions. Many of them know somebody who has what I have, or had what I have, and they want to tell me all about the treatment. Many have just read something on the subject and want to tell me all about it. These people are quite well meaning, but it gets very tiring after a while, refraining from saying, "Shut up! You have no idea and are only making me feel like you think I'm stupid. Not helpful."
I've done it myself, especially when meeting someone who has similar conditions to mine. But I try to get only to the point where we are finding common understanding because of shared pain. Ten people can have the same diagnoses and those ten people will be affected in ten dramatically different ways. It is the way it is. The same treatments affect them differently as well.
I've told you that to tell you this:
Something a woman once said has stayed with me. She wrote a column for the paper where I was the weekend editor and she came with me to a Reiki treatment I was getting at the time as she was writing a story about it. She walked with a cane as she had some neuropathy in her foot. She said, "People are always asking me if I've tried this and that. But after all this time, I don't know that I would change it if I could. It has become part of who I am."
It's been 7 years for me and I really understand that now.
I don't know that anyone will ever truly understand what I have, that movement brings me pain and that I cannot live without movement. Conditions keep evolving. But it's OK now if I'm never understood. And it's unbelievable to me what I can endure; it puts so many other things in their proper places of not-so-important. I am now this person because of the last seven years. Chronic pain? So what.
Saturday, December 11, 2010
It’s Not Too Much To Ask
Somebody needs to invent a virtual touring mechanism for when you're watching a movie online or at home. This guy is lying on a couch and for a brief moment the camera panned over the art on the wall above. I didn't want to rewind (how prehistoric is that!); I just wanted to click and scroll over his head while he was talking.
In the same vein, I’ve been saying since 1999—at least!—that somebody needs to invent emailing food. People are always emailing me about what they are cooking. TORTURE! Of course, if you could email food, you could email anything and where would the post office be then? Defunct. This is my notice to the USPS: Give it up now! You Are Doomed! UPS and Fedex are probably still OK as there will still be things too large to email that people will want to send one another, such as elephants and furniture, and who knows how long it will take to work out the kinks of losing things in cyberspace. Could be a whole new industry for those out-of-work postal employees: Cyberspace Lost and Found.
Another thing, I need to learn to astral travel right away. Practice makes perfect but I’m not at all sure I know the right way to start. Any reputable teachers around? I think it could be something like the holograms in Stars Wars, which are really only videos, only more life size and ethereal—kind of ghostlike. Or like beaming yourself up and down like Star Trek. If everybody would learn how then it likely could put airplanes, etc., out of business, but I don’t think everybody is going to be able to do it, never mind want to do it. Although I don’t know why not.
Wait, let’s astral travel into the dang movie—now THAT’S an idea.
In the same vein, I’ve been saying since 1999—at least!—that somebody needs to invent emailing food. People are always emailing me about what they are cooking. TORTURE! Of course, if you could email food, you could email anything and where would the post office be then? Defunct. This is my notice to the USPS: Give it up now! You Are Doomed! UPS and Fedex are probably still OK as there will still be things too large to email that people will want to send one another, such as elephants and furniture, and who knows how long it will take to work out the kinks of losing things in cyberspace. Could be a whole new industry for those out-of-work postal employees: Cyberspace Lost and Found.
Another thing, I need to learn to astral travel right away. Practice makes perfect but I’m not at all sure I know the right way to start. Any reputable teachers around? I think it could be something like the holograms in Stars Wars, which are really only videos, only more life size and ethereal—kind of ghostlike. Or like beaming yourself up and down like Star Trek. If everybody would learn how then it likely could put airplanes, etc., out of business, but I don’t think everybody is going to be able to do it, never mind want to do it. Although I don’t know why not.
Wait, let’s astral travel into the dang movie—now THAT’S an idea.
Friday, November 12, 2010
Youth In Asia (Killing Me Softly)
I have recently been investigating ways to kill myself painlessly. Just in case. Some of you may be a tad worried about that (no reason to, I assure you); some of you won’t read any further than this paragraph.
For those of you still here, this really is not about being depressed and unable to see the bright side of life. I have, so far, been unable to NOT see the bright side. But I am concerned about euthanasia, and have been off and on for at least the past 20 years. At least since Dr. Jack Kevorkian began making headlines.
During my quest for information I contacted a pharmacist friend of mine and asked what the best thing to use was. He wondered only if I was having a bad day. I’d say that was a pretty bad day, but I was saddened only that he didn’t realize where I was coming from. And he never would say. That may have been part of a pharmacist’s oath or something but the guy I used to know would have gotten where I was coming from. Instead he was suspicious, I think.
Putting religious beliefs aside, if you can, I want to examine euthanasia with the view of it being a practical matter, and possibly being a great relief to ourselves and our family and friends. I know that we are not dogs and cats, but I think we can look at pet euthanasia and apply its principles to people. Why wait until someone’s body and/or mind is ravaged by disease, their finances drained so there is more burden brought upon those left behind? Bad enough they have to watch their loved one suffer for far too long as it is.
Part of the outcry against human euthanasia is that people will be killing off family members and themselves willy-nilly at the first sign of a sniffle so as to benefit from expected inheritances.
I believe fervently that people, as a general rule, aren’t going to do this very often or easily. (I think that about abortion as well but haven’t looked at the numbers.) Pet owners sometimes still wait far too long to euthanize their pets, believing against all hope that they aren’t really suffering or there’s a chance they’ll get better. I believe having the option—without the legal trouble—to off yourself or help someone close to you to do so will not be misused any more than other things are misused. There is always going to be stupidity, and that cannot be legislated, even though we all know it’s been tried repeatedly and those attempts likely will continue as long there are politicians and attorneys.
I'm adamant I'd like the option if I became unable to care for myself in any way. I don't want my daughters, granddaughters, friends and family to have to see me that way for an extended period of time because my body was still willing to produce enough oxygen to carry on. That's no way to live, for me or them.
If it became a legal option to end your life, we could then procure the knowledge and the means to do it compassionately and with as little pain to the dying as possible. We are already half way there, with hospice. I don't know anyone who isn't grateful for the compassionate care received there. Let’s go one step further and have the legal option before we become dessicated if we so choose.
For those of you still here, this really is not about being depressed and unable to see the bright side of life. I have, so far, been unable to NOT see the bright side. But I am concerned about euthanasia, and have been off and on for at least the past 20 years. At least since Dr. Jack Kevorkian began making headlines.
During my quest for information I contacted a pharmacist friend of mine and asked what the best thing to use was. He wondered only if I was having a bad day. I’d say that was a pretty bad day, but I was saddened only that he didn’t realize where I was coming from. And he never would say. That may have been part of a pharmacist’s oath or something but the guy I used to know would have gotten where I was coming from. Instead he was suspicious, I think.
Putting religious beliefs aside, if you can, I want to examine euthanasia with the view of it being a practical matter, and possibly being a great relief to ourselves and our family and friends. I know that we are not dogs and cats, but I think we can look at pet euthanasia and apply its principles to people. Why wait until someone’s body and/or mind is ravaged by disease, their finances drained so there is more burden brought upon those left behind? Bad enough they have to watch their loved one suffer for far too long as it is.
Part of the outcry against human euthanasia is that people will be killing off family members and themselves willy-nilly at the first sign of a sniffle so as to benefit from expected inheritances.
I believe fervently that people, as a general rule, aren’t going to do this very often or easily. (I think that about abortion as well but haven’t looked at the numbers.) Pet owners sometimes still wait far too long to euthanize their pets, believing against all hope that they aren’t really suffering or there’s a chance they’ll get better. I believe having the option—without the legal trouble—to off yourself or help someone close to you to do so will not be misused any more than other things are misused. There is always going to be stupidity, and that cannot be legislated, even though we all know it’s been tried repeatedly and those attempts likely will continue as long there are politicians and attorneys.
I'm adamant I'd like the option if I became unable to care for myself in any way. I don't want my daughters, granddaughters, friends and family to have to see me that way for an extended period of time because my body was still willing to produce enough oxygen to carry on. That's no way to live, for me or them.
If it became a legal option to end your life, we could then procure the knowledge and the means to do it compassionately and with as little pain to the dying as possible. We are already half way there, with hospice. I don't know anyone who isn't grateful for the compassionate care received there. Let’s go one step further and have the legal option before we become dessicated if we so choose.
Friday, November 5, 2010
Let's Not And Say We Did
I'd like to call these Pet Peeves, but I've never had a pet who irked me in this way, so I'm calling it People Peeves. Things friends and lovers say that peeve. Clearly I attach too much importance to words, tending to take every single alphabet grouping to heart. I don't think I can work it any other way, though.
“I’m taking up too much of your time.”
Why? If you believe what you're saying, then what the hell are you doing that for? That is clearly a manipulation, especially when I give you no indication that you are doing so. Don’t you know yet that if I want to hang up the phone, I have no problems saying so? That if I am ready for you to leave, I can tell you easily that it’s time for you to do so? If you are ready to go or hang up, just say so instead of putting it on me. How old are you?
“Sorry to bother you.”
Another manipulation. You want me to say, “It’s no bother,” to give you reassurance. Because we are friends or acquaintances, I’ll give you the reassurance the first couple of times, but if you continue to say it every time you call, I’m going to stop talking to you eventually, because you annoy the crap out of me.
“I didn’t mean to …”
This is a tricky one, as sometimes we do things that bring up “unintended” consequences. I have to say that if you say that a lot, you won’t say it a lot to me as I won’t be putting myself out to you for long. And I’ll know when you mean to apologize.
“You think you know me, but you don’t.”
Ahhh, the phrase that indicates your long-time partner is hiding something from you and wants you to be astute enough to figure it out instead of coming clean themselves. It’s not good news.
"You have no idea how much I love you."
Well, you know what? It’s because you are doing a damn poor job of showing me. So shut up.
“I’m taking up too much of your time.”
Why? If you believe what you're saying, then what the hell are you doing that for? That is clearly a manipulation, especially when I give you no indication that you are doing so. Don’t you know yet that if I want to hang up the phone, I have no problems saying so? That if I am ready for you to leave, I can tell you easily that it’s time for you to do so? If you are ready to go or hang up, just say so instead of putting it on me. How old are you?
“Sorry to bother you.”
Another manipulation. You want me to say, “It’s no bother,” to give you reassurance. Because we are friends or acquaintances, I’ll give you the reassurance the first couple of times, but if you continue to say it every time you call, I’m going to stop talking to you eventually, because you annoy the crap out of me.
“I didn’t mean to …”
This is a tricky one, as sometimes we do things that bring up “unintended” consequences. I have to say that if you say that a lot, you won’t say it a lot to me as I won’t be putting myself out to you for long. And I’ll know when you mean to apologize.
“You think you know me, but you don’t.”
Ahhh, the phrase that indicates your long-time partner is hiding something from you and wants you to be astute enough to figure it out instead of coming clean themselves. It’s not good news.
"You have no idea how much I love you."
Well, you know what? It’s because you are doing a damn poor job of showing me. So shut up.
Saturday, October 30, 2010
Walk Like An Egyptian
I still remember the feel of the sheets I found in a department store in downtown Kerrville, Texas, (the one that’s gone now, Schreiner’s) that I wanted to buy with what was left of my going-away gift certificate from my coworkers. I stood there, in the linens department, for 20 minutes, feeling those sheets—Egyptian cotton, 400-thread count—my fingers shoved into the packaging, caressing the material like a big weirdo and daydreaming about how it would feel to sleep on them.
Twenty minutes! Really!
The set was on sale for $80 and I had the money for it but I also had Libby and Bella, two pooches, who would have ruined them immediately while not experiencing a single pang of guilt for doing so.
Oh, but I wanted those sheets in the worst way! It is one of those times that stand out clearly in my mind. The longing—they call it that because the feeling lasts a bit—then denial, acceptance and the walk-away.
I loved that store and the things it sold: always they had lovely home goods, my favorite section.
I sighed, put the package down, looked around to see if anyone was taking special notice of me and walked away slowly, hoping to prevent myself from being arrested for acting like a sheets pervert.
I don’t have any Egyptian cotton sheets still, nor do I have Libby and Bella any more, and I’m OK with all of it.
Twenty minutes! Really!
The set was on sale for $80 and I had the money for it but I also had Libby and Bella, two pooches, who would have ruined them immediately while not experiencing a single pang of guilt for doing so.
Oh, but I wanted those sheets in the worst way! It is one of those times that stand out clearly in my mind. The longing—they call it that because the feeling lasts a bit—then denial, acceptance and the walk-away.
I loved that store and the things it sold: always they had lovely home goods, my favorite section.
I sighed, put the package down, looked around to see if anyone was taking special notice of me and walked away slowly, hoping to prevent myself from being arrested for acting like a sheets pervert.
I don’t have any Egyptian cotton sheets still, nor do I have Libby and Bella any more, and I’m OK with all of it.
Thursday, October 28, 2010
Headline Strikes Fear
As a newspaper editor, one of my favorite things to do was write headlines, and if I look at a newspaper nowadays, I swiftly scan Page One and judge each headline, subhead and cutline as if it were in a contest. Because, really, among those tasked with the job, I can say we are a competitive bunch, within and between newsrooms, and want to do our best.
While on deadline, I’d get the lead story and drop it in place, and prepare for my favorite part, writing the headline. I was lucky to have other editors and reporters who were key to inspiring pithy turns of phrase.
I’d yell out, “Marty! I need help with this headline.” Marty, being the quickest producer of good—and lengthy, when necessary—front page copy, never frazzled by deadline, would jump up and come over and we would start throwing out suggestions, beginning with the stupidest. Pretty soon the newsroom staff would be cracking up. It would spur others to throw in their craziness when somebody in the bunch, like Jane, would yell out something that made all of us say, “That’s it!” And we’d all turn back to what we were doing, assured that we were working together, turning out another great product, one that renewed every 24 hours.
Got a chuckle the other day while surfing: Being unable to avoid the strip of pictures and headlines that show up on Yahoo! News from catching my eye, I found it funny what stories are deemed interesting and how their placement may or may not be critical any more, given the short time a story is featured online before being pushed down in the queue.
These two were side by side: “Swimmer Dies In Open Water Race” and “Kate Hudson’s Style Misstep”
It was amusing to me that they were next to each other.
Clearly, one was far more important than the other.
While a swimmer dying during a race would have been lead worthy in a print version of the hometown paper, I was never going to click on that one, not being a swimmer and the story likely not local to me. And it was bad news, something I strive to avoid.
Instead, I found my curser hovering over the more important link, drawn to what could possibly be so bad as to warrant a story about what the lovely Kate Hudson was wearing. I was thinking that clicking on this story might bring me a laugh at best, and at the very least, there’d be a picture of Ms. Hudson, who has never been a disappointment to look at no matter what she does or doesn’t have on.
But I didn’t. Click on it.
It was fear I might find that somebody actually believed it was important. Which reminded me that all news is bad, thoroughly avoidable and completely unimportant.
Unless you're getting paid to write it.
While on deadline, I’d get the lead story and drop it in place, and prepare for my favorite part, writing the headline. I was lucky to have other editors and reporters who were key to inspiring pithy turns of phrase.
I’d yell out, “Marty! I need help with this headline.” Marty, being the quickest producer of good—and lengthy, when necessary—front page copy, never frazzled by deadline, would jump up and come over and we would start throwing out suggestions, beginning with the stupidest. Pretty soon the newsroom staff would be cracking up. It would spur others to throw in their craziness when somebody in the bunch, like Jane, would yell out something that made all of us say, “That’s it!” And we’d all turn back to what we were doing, assured that we were working together, turning out another great product, one that renewed every 24 hours.
Got a chuckle the other day while surfing: Being unable to avoid the strip of pictures and headlines that show up on Yahoo! News from catching my eye, I found it funny what stories are deemed interesting and how their placement may or may not be critical any more, given the short time a story is featured online before being pushed down in the queue.
These two were side by side: “Swimmer Dies In Open Water Race” and “Kate Hudson’s Style Misstep”
It was amusing to me that they were next to each other.
Clearly, one was far more important than the other.
While a swimmer dying during a race would have been lead worthy in a print version of the hometown paper, I was never going to click on that one, not being a swimmer and the story likely not local to me. And it was bad news, something I strive to avoid.
Instead, I found my curser hovering over the more important link, drawn to what could possibly be so bad as to warrant a story about what the lovely Kate Hudson was wearing. I was thinking that clicking on this story might bring me a laugh at best, and at the very least, there’d be a picture of Ms. Hudson, who has never been a disappointment to look at no matter what she does or doesn’t have on.
But I didn’t. Click on it.
It was fear I might find that somebody actually believed it was important. Which reminded me that all news is bad, thoroughly avoidable and completely unimportant.
Unless you're getting paid to write it.
Wednesday, August 25, 2010
Our Girls
Well, the time goes so quickly
It goes lickety splitly
And now Aidenne and Joss
Are in school
Life is full of clichés now
Of which many are true
And Aidenne and Joss
Well, they rule
They love everything going
Their smarts they are showing
And now Aidenne and Joss
Are no fools
In the show that’s unfolding
I’ve become quite unscolding
That Aidenne and Joss
Make me drool
I want to be near them
So I can see/hear them
Our Aidenne and Joss
Are so cool
It goes lickety splitly
And now Aidenne and Joss
Are in school
Life is full of clichés now
Of which many are true
And Aidenne and Joss
Well, they rule
They love everything going
Their smarts they are showing
And now Aidenne and Joss
Are no fools
In the show that’s unfolding
I’ve become quite unscolding
That Aidenne and Joss
Make me drool
I want to be near them
So I can see/hear them
Our Aidenne and Joss
Are so cool
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