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RE: Got Prayers? (Or Good Wishes?) - 6/16/2013 11:41:52 AM   
Duskypearls


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You are in good company, dc...

Robin Gibb
Sharon Osbourne
Ronald Reagan
Pope John Paul II
Darryl Strawberry
Vince Lombardi
Kareem Abdul-Jabbar
Ruth Bader Ginsberg
Audrey Hepburn
Eartha Kitt
Elizabeth Montgomery
Milton Berle
Claude Debussy
Carolyn Jones
Terry Jones


You know what that means, don't you? You're a STAR!!!

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RE: Got Prayers? (Or Good Wishes?) - 6/18/2013 7:13:57 PM   
dcnovice


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FR

Today was rough, and the latest update reflects that. Sorry to be a downer!

Hamilton Jordan has me beat, big-time. He was the youngest chief of staff (to Jimmy Carter) in West Wing history. He then went on to survive three bouts of cancer: melanoma, lymphoma, prostate. So I’m wary, as both a modest presence on the Washington landscape and a newbie on Planet Cancer, to disagree with the bracing, bright-side attitude embodied in the title of his memoir: No Such Thing as a Bad Day. Even this curmudgeonly editor admits that’s a damn good title.

But is it true?

I must admit I have my doubts, hugely reinforced by what today bought me. It was, to be blunt, a shitty day—both literally and figuratively. (To borrow from Vivian Bearing, the protagonist in Wit, “my vocabulary has taken a turn for the Anglo-Saxon.”) The literal, physical shit came in the form of unexpected diarrhea that struck several times throughout the workday. Two of those times, I did not reach the toilet (a bit of hike from my desk) quite fast enough.

The metaphorical shit was workplace worries. The first has to do with time off for my assorted ailments. The Family and Medical Leave Act (FMLA), as I understand it, gives one the right to take 60 days of leave without losing one’s job. I have, I’m told, taken 30, and I’m nowhere near halfway through treatment. So now the fear of losing my job—and health coverage—in the middle of my cancer crisis looms over my head and heart. The other workplace woe is that my boss has redivided the duties between the freelance editor and me in a way that essentially makes me her assistant.

Logically, I understand the need for a single hand on the helm and the wisdom of that hand’s belonging to someone healthy. But it still hurts like hell and reinforces my fears of who’s saying what behind my back. And did it have to happen today, when I was already in the dumps?

This is the point in a MiMA update where I should shift gears and pull some positivity out of a hat (or elsewhere for those in an Anglo-Saxon frame of mind). Not tonight. To borrow from one of my favorite hymns, “I am tired, I am weak, I am worn.” And I think I am also ending here before I depress either of us further.

Thanks for elistening!



_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/18/2013 9:04:59 PM   
Duskypearls


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Perhaps I may have the honor of saying it for you, dc...

It's shitty. It sucks. It feels goddamn awful, so goddamn awful.

It's hard to feel hopeful and pretend one's usual social pleasantries and literary ditties when it feels as though you're being wrung through the wringer, and Rome seems to burn inside and all around.

It's unnerving, frightening and overwhelming.

And it's okay.

If you pray, perhaps pray from deliverance from that which torments you, and for the protection, strength and grace to weather what comes your way.

Dear One, they only job of any importance you have at this moment is to breathe, get through each step one at a time, garner your friends and family close to you and tell them what you want, need and what you fear.

Perhaps encircle yourself amongst friends and family, and play the game of "What if?" That game where you get to express your deepest fears regarding this experience to them, and ask them to give their input.

One never knows what answers and ideas might manifest.


dc, it has been my experience, one is actually at their strongest when they are at their weakest, tho' I must admit it rarely feels true at the time.

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RE: Got Prayers? (Or Good Wishes?) - 6/18/2013 9:45:24 PM   
Rule


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Endure and persist.

_____________________________

"I tend to pay attention when Rule speaks" - Aswad

"You are sweet, kind, and ever so smart, Rule. You ALWAYS stretch my mind and make me think further than I might have on my own" - Duskypearls

Si vis pacem, para bellum.

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RE: Got Prayers? (Or Good Wishes?) - 6/18/2013 10:12:36 PM   
Duskypearls


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quote:

ORIGINAL: Rule

Endure and persist.


You said in three words what it took me...I don't know how many to say!

Listen to Rule, dc, he's much far more succinct and to the point than I!

ETA....ah...the road to hell is paved with good intentions.

< Message edited by Duskypearls -- 6/18/2013 10:13:12 PM >

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RE: Got Prayers? (Or Good Wishes?) - 6/19/2013 12:18:20 AM   
LafayetteLady


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quote:

ORIGINAL: dcnovice

quote:

In case you are headed for death, I recommend reading "On a pale horse" by Piers Anthony.


We're all headed for death; it's just a question of timing.

But I appreciate the book suggestion. Thanks!

Speaking of timing, my fun fact for the night is that the Queen Mother had colon cancer and lived to be 101. Of course, I'm not sure I want to stick around quite that long!






Not even if it meant you got to where that hat? Or perhaps because you would have to wear that hat, lol.

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RE: Got Prayers? (Or Good Wishes?) - 6/19/2013 12:34:41 AM   
LafayetteLady


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Bad days happen for all of us. In your situation, you are going to get far more than your fair share of bad days. I think I speak for many of us when I say that if there was a way I could take on a couple of bad days for you, I would gladly do so.

Every post you make to this thread is truly an inspiration. When I hit Off Topic and see something new on this, I come here first, never knowing whether you will make me laugh, pray harder or simply "listen."

Even though you are so very inspirational in your fight, don't ever feel like you have to be. I think I said right at the beginning, when you feel the worst, and mad at God, the world, your boss, MiMA, whatever, come and rant, rave, curse, scream at the top of your lungs in extra large capital letters if that is what you need at that moment.

We will be here whatever you post offering whatever we can, a shoulder to cry on, a friend to commiserate with, to listen, to laugh, whatever you need.

Last year, when I came down with C-diff from all the antibiotics with the kidney stones, I dealt with that uncontrollable diarrhea and know how much it can suck, even if we both suffered it for different reasons. I had to carry a change of clothes (or two) whenever I left the house, clean my couch several times a day and at the time, I didn't even know why. I never would have managed to go to work at that time.

As far as your job goes, do you have any sick leave or vacation time you can use? Sadly, it doesn't sound like your employer is really willing to work with you very much on the time off. Disability insurance? I wish I had some better advice for you there.

In any case, just remember that since this whole thing started you have had good days and bad days. Some good ones will come back soon and you just need to hold on until they do. If you need to wallow in your own misery for a few days, go for it. You have certainly earned the right to do so.

You continue to have my prayers and best thoughts.

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RE: Got Prayers? (Or Good Wishes?) - 6/20/2013 5:30:45 PM   
dcnovice


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quote:

Endure and persist.

Good advice, thanks!

Writerly ego that I am, I can't resist sharing a March 27th update I don't think I've posted before.

God speaks to me in strange ways sometimes, and today the Almighty’s mouthpiece was especially offbeat—a soap dispenser in an exam room at Georgetown. A nurse had wheeled me in there after my radiation treatment so that we could try to sort out why I was still feeling wobbly and even a bit dizzy. I’ve been walking with a stylish, burgundy “third leg,” as Woodrow Wilson would have called it, since Saturday afternoon.

The dispenser was mounted on a wall to the right of the door. It was full to the brim with a liquid whose soft blue shade echoed the cloaks on the Mary statues in St. Frances classrooms. Fussy, creamy-gray type announced what I took to be the product’s name: Endure. That seemed an odd “brand” for a soap, but then marketing has always lain beyond my ken.

I took this imperative as advice from above. “There’s not much you can do right now,” someone seemed to be saying, “so just hang in there with all the grace and guts you can muster.” Neither is a huge stock in my arsenal, but I said I’d try. As my mind wandered with a freedom my legs now keenly miss, the adverb “simply” swam along and cozied up to my mot du jour. “Simply endure. Simply endure,” kept gliding through my head.

The phrase sounded so familiar, even homey, I was sure I hadn’t coined it myself. Was it the motto of some proud English family? Some Churchillian utterance? The rallying cry of a band of brothers?

I brought this query to dear old Google, and it led me in toward The Voice, a new, collaborative Scripture translation drawing together the work of “scholars, pastors, writers, musicians, poets, and other artists.” I’d never heard of it, and it may be something to check out. Here is its rendering of Hebrews 10:36: “Simply endure, for when you have done as God requires of you, you will receive the promise.”

Precisely what God requires of me in this medical moment is a puzzle. I’ve embarked on a modest ministry of bringing warmth and welcome to everyone in the rad onc bunker. After being drawn out by Bob (whom I miss now that his wife’s treatment is over), I’m trying eye and even a little verbal contact. I learned today that one young man I’ve seen often is there to accompany his grandmother, who had a birthday today! My cousin Bonnie made some awesome treats that I plan to share tomorrow.

And who knows what promise awaits me? I only hope and pray it doesn’t involve a colostomy bag.

So that leaves me with the stark command that starts the sentence: Simply endure.

When the aches and throbs from falling last week linger long enough to earn me the cover of Arthritis Today, simply endure.

When going down half a flight of steps seems like a labor of Hercules, simply endure.

When bladder and legs argue over how quickly to get to the bathroom, simply endure.

When that same bladder, on reaching the toilet, chirps, “Only kidding,” simply endure.

When you wonder if you’ll ever walk without a cane again, simply endure.

When HR folks tactfully suggest looking at disability benefits, simply endure.

When Mom says “You sound good!” over the phone, and sobs erupt, simply endure.

When well-meant words clang in my ears, simply endure.

When the Zoo director offers any help he can for my struggles, and my first thought is "Can you authorize humane euthanasia?" simply endure.

When you realize other body parts still have needs of their own, sometimes requiring focus and resources that seem all too scant, simply endure.

Simply endure.

Done. For today anyway.



_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 4:32:46 AM   
TheBanshee


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DC

You express yourself so beautifully. Stay strong, take it one small step at a time. Many many prayers are with you.

(hugs)

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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 7:04:19 AM   
Duskypearls


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dc, I do believe you've actually got it, my friend...


“...so just hang in there with all the grace and guts you can muster.”


Sometimes that's all we have left we can do. Sometimes even that isn't so easy. Sometimes we can't, and don't even have enough for that.

Whatever the ride, sometimes all we can do is hang on with the skin of our teeth, and it doesn't always need to be graceful.

And that is just fine.


I believe we can say you're coined a new term...."Gut muster." Pity they don't have paid positions for the title...Lawd knows it can be a hard job!

< Message edited by Duskypearls -- 6/21/2013 7:05:44 AM >

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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 7:11:30 PM   
dcnovice


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FR

Snarling and spitting tonight.

My aunt writes, "Wonder what it would look like to stand up to the challenges of office and MIMA? If instead of being a victim you were in charge.... One has a choice in the face of devastation. Why do the incurable survive and those with minor symptoms succumb? What quality of self allowed folks to survive concentration camps."

My brother (after I shared my aunt's email) says, "the tone of your MiMA notes has decidedly shifted from a "scared but upbeat" perspective pre neck surgery, to a decidedly downbeat angle ... So when I read your posts, I'm sad for you (my heart aches for you as you go through this) and admittedly somewhat frustrated too. The frustration stems from wanting to hear you fighting back."

Yes, they probably have good points, which I'll ponder when I'm in a better space.

But can I just say for now, I'm really tired of being found wanting by folks who have no fucking clue what it's like to walk in my shoes.

As ever, thanks for elistening!

_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 8:00:03 PM   
Duskypearls


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quote:

ORIGINAL: dcnovice

FR

Snarling and spitting tonight.

My aunt writes, "Wonder what it would look like to stand up to the challenges of office and MIMA? If instead of being a victim you were in charge.... One has a choice in the face of devastation. Why do the incurable survive and those with minor symptoms succumb? What quality of self allowed folks to survive concentration camps."

My brother (after I shared my aunt's email) says, "the tone of your MiMA notes has decidedly shifted from a "scared but upbeat" perspective pre neck surgery, to a decidedly downbeat angle ... So when I read your posts, I'm sad for you (my heart aches for you as you go through this) and admittedly somewhat frustrated too. The frustration stems from wanting to hear you fighting back."

Yes, they probably have good points, which I'll ponder when I'm in a better space.

But can I just say for now, I'm really tired of being found wanting by folks who have no fucking clue what it's like to walk in my shoes.

As ever, thanks for elistening!


Oh dear, what a mess some people are. Easy for them to say, telling you what you should do. Makes you not want to open yourself to those kinds, when you most need them for support. I'm so sorry, dc, some of them are hurting you, and when you least need it.

It can seem an impossible feat, when one's health is challenged, to suffer silently the slings and arrows of outrageous fortune so generously doled out by the well-meaningérs. Almost makes me wonder whether it might be time to consider creating a Declaration of Things That Will and Will Not Help dc? Maybe ask that Aunt of yours, "Dear Auntie, what are you going to do to make that happen?" Or your brother, as well. Perhaps they've never experienced such as you are, and have NO idea how exhausted you are, without a drop of energy to spare. I know from personal experience, there can often be not enough left of a person than to more than eat, drink, pee, shit and go do doctors. Dealing with such issues at the workplace takes energy that isn't there. One's energy, when so ill, is sacred and at an all time low.

I, personally, am an oddball. When unwell or overwhelmingly challenged, I don't want anybody's bloody advice, or feeble, inadequate suggestions or offers of help. I am the only one who knows what I want and need, and how and when I want and need it.

I have had to teach people not to offer me unsolicited advice, but to offer me an ear, if that is what I ask for. I have found if I don't rein some of them in, out of their mouths is guaranteed to spout mostly idiotic and unhelpful things.

When I come upon another in need or distress, I will ask is..."What can I do for you?" That allows them to serve themselves best by telling me or not telling me, without having to worry about protecting themselves from me, or inspire them to avoid me, or communicating honestly with me.


Forgive me for turning this into a rant about myself. And now, back to our previously scheduled program...

< Message edited by Duskypearls -- 6/21/2013 8:06:12 PM >

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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 8:11:57 PM   
TheHeretic


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That truly sucks, my friend.

My sense is that both messages are rooted somewhere in love and concern, but bloomed into something distinctly unpleasant.

Perhaps something along these lines



_____________________________

If you lose one sense, your other senses are enhanced.
That's why people with no sense of humor have such an inflated sense of self-importance.


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RE: Got Prayers? (Or Good Wishes?) - 6/21/2013 9:02:37 PM   
Duskypearls


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For you, dc.

Hit the Ground and Run, Lizz Wright

http://www.youtube.com/watch?v=8epnzRGdHG4

Hit the ground, baby
It's alright now
Hit the ground, baby
Take your veil down
See your eyes in mine
Leave the rest behind
Hit the ground, baby'Cause I want to love you now
Hit the ground, baby
I said it's alright now
Hit the ground, baby
You're gonna make it somehow
Baby, why so lonely?
The day has just begun
Hit the ground, baby
Hit the ground and run
See your eyes in mine
Leave the rest behind
Hit the ground, baby
Hit the ground and runHit the ground, baby
Hit the ground and run

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RE: Got Prayers? (Or Good Wishes?) - 6/22/2013 10:58:47 AM   
dcnovice


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quote:

My aunt writes, "Wonder what it would look like to stand up to the challenges of office and MIMA? If instead of being a victim you were in charge.... One has a choice in the face of devastation. Why do the incurable survive and those with minor symptoms succumb? What quality of self allowed folks to survive concentration camps."

I forgot to share the reply i almost sent to my aunt.

"Wonder what it would look like to share honestly about my plight and not get insipid drivel in response."

_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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RE: Got Prayers? (Or Good Wishes?) - 6/22/2013 11:04:00 AM   
sexyred1


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If were you, I would have told her that. Sympathy is what is needed.

There are so many people who have no censor when it comes to talking. They do not think first.

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RE: Got Prayers? (Or Good Wishes?) - 6/22/2013 12:59:51 PM   
Duskypearls


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Perhaps something a little more gentle like, "Auntie, I am blessed to have you, and know how much you love and want to help me. Let me tell you what would be a big help to me. That way you'll have the tools to do what you do best...love and help others."

Too silly?

< Message edited by Duskypearls -- 6/22/2013 1:01:07 PM >

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RE: Got Prayers? (Or Good Wishes?) - 6/22/2013 5:48:16 PM   
kdsub


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quote:

Wonder what it would look like to share honestly about my plight and not get insipid drivel in response."


I'm glad you didn't...Think about it... if she did not care about you she could have easily went on the "ohhh poor you drivel". As bad as it came off with you it was well meaning and hard for her to say. I'll bet she was thinking that she would shock you out of your bad state of mind.

I don't know about you but I often don't know what to say when people are ill or there has been a tragedy in the family. I'm liable to say the dumbest things and it seems those that love you most tend to say the dumbest things of all.

Butch

_____________________________

Mark Twain:

I don't see any use in having a uniform and arbitrary way of spelling words. We might as well make all clothes alike and cook all dishes alike. Sameness is tiresome; variety is pleasing

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RE: Got Prayers? (Or Good Wishes?) - 6/22/2013 10:34:13 PM   
fluffypet67


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DC, prayers for you today and every day.

Some thoughts from my time with chemo:

The mediport is the most amazing thing that medical science has ever invented.
Knitting an afghan got me through my hours of chemo. (Maybe you could learn to knit.)
The old normal is gone, but I am content with my NEW normal.

And (there it is - starting a sentence with a conjunction) my colostomy is my friend.



_____________________________

fluffy
a BC survivor for 4 years.

On my own again.

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RE: Got Prayers? (Or Good Wishes?) - 7/2/2013 7:18:37 PM   
dcnovice


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Latest update. Hope this finds folks well!

One of the most famous of all Broadway tunes comes from a musical I’ve never seen—Show Boat. Fairly early in Act I, a black dock worker named Joe reflects in song about “Old Man River,” the mighty Mississippi, which “just keeps rollin’ along.”

I feel a bit like that brown river as I glance back at the days since my last note. “Rollin’ along” is not a bad description of what I’ve been up to. There have been ups, downs, and plenty of in-betweens.

Ups have included the amazing National Cathedral service on June 26 to give thanks for the DOMA decisions. Back in my coming-out days, nearly three decades ago, I’d hoped that generations yet unborn, perhaps in a century or so, might see a time when two men or women could marry, when queer folk could dance in the sunlight as well as the shadows. I certainly never expected to see that moment myself, let alone celebrate it in one of the leading churches in the land. I’ve been at a fair number of events at the cathedral over the years, and I don’t think I’ve ever seen that beloved building pulse with quite the energy and joy as we reveled in the other night. (Jane Dixon’s consecration as suffragan bishop came close.)

Another up was joining my cousins in Maryland for a sweet 16 birthday party for their daughter. Being together was wonderful, and we feasted on seafood and strawberry shortcake. It’s hard to believe they’ve been here for ten years now; it’s easy to believe they’ve been one of the great blessings of the last decade.

Downs have been chemo and its irksome effects. The IV chemo went fairly well, though the needle in my Mediport hurt far longer than it should have. The pain continued even after I’d returned home. Fortunately, retaping the hookup improved things. After several hours of IV chemo, I was once again hooked up to a portable pump that would “infuse” me with a potent drug—familiarly and aptly known as 5FU—over the next 46 hours. The pump and I got along decently, and I even slept okay with it. The infusion ended before the visiting nurse was due, but I successfully turned the pump off by following the instructions they’d given me in the hospital.

The period between the infusion’s end and the nurse’s arrival brought a darkly funny moment. I was feeling a bit proud of how deftly I’d managed the pump, even taking it to dinner and the supermarket. But I relaxed my guard a smidge too early. Standing up from my desk chair, I failed to notice the tubing under my shoe. My foot yanked the tubing down, and you can guess what happened next. Yes, pop goes the needle! I set the tubing aside, tidied myself up, and awaited the nurse. I also gave thanks that this mishap took place after the infusion had ended. Otherwise, I’d have sprayed chemo drugs all over myself and my place. That would have been a definite FU experience!

To my pleasant surprise, the nurse took things in stride. Unfortunately, the need to “flush the line” meant that he had to restick me and inject saline into the Mediport. That, alas, took four painful tries. I was not real pleased. And now I’m chemo-free till the 12th. Hallelujah!

I’m not quite effect-free, though. The chemo (I think) has made me bone weary and given me quite the testy tummy. It also likes to pull the “fire alarm” for a bowel movement, wait till I’ve torn to the toilet, and say, “Just kidding!” That gets old, especially at work. I suspect the chemo also plays a role—directly or not, I don’t know—in dampening my spirits. There have definitely been days, and today was one, where I could have sung along with Joe the dock hand, “I get weary and sick of tryin'. I'm tired of livin' and scared of dyin'.”

Low spirits also bring a strange solitude. I know my recent emails and texts don’t have the quirky, spunky defiance of earlier editions, when all this was new and the physical toll was still in the future. That makes me worry that I’m wearing folks out and overdrawing on their sympathy. So then I try keeping the rough stuff to myself, but that never works for long. I’m also keenly aware that I owe replies to more wonderful emails (and CM messages!) than I can count, and I apologize for that.

“But Ol’ Man River, he just keeps rollin’ along.” And I plan to do so too. Thanks for rollin’ along with me.



_____________________________

No matter how cynical you become,
it's never enough to keep up.

JANE WAGNER, THE SEARCH FOR SIGNS OF
INTELLIGENT LIFE IN THE UNIVERSE

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