you know what bugs me?

Samkl

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Vltsra, my mind went in the same direction when we received the perfect life form letters when I was taking care of my husband. In fact I entertained myself and my husband with all the " wonderful " pictures and expierences we could share! We had some good laughs thinking about it.
If you Google “Mrs Brown election lessons”, you’ll see why “that’s nice” can be an appropriate response😬
 

Samkl

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“elocution” not election
 

KarenNWendyn

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In fact I entertained myself and my husband with all the " wonderful " pictures and expierences we could share! We had some good laughs thinking about it.
This gives me ideas!
Picture smiling PALS and CALS lovingly doing a tube feeding or a spoon feeding.
Or a wonderful Hoyer adventure.
Or lovingly putting on a BiPAP mask.
Or suctioning

The caption could read “With love, from our family to yours.”
 

vltsra

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I had a whole letter in my head too!

Karen are you the moderator for the DIHALS forum? You are a better person than I. Why some of them seem to WANT an ALS diagnosis is beyond belief.
 

KarenNWendyn

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Any PALS, CALS or former CALS/ lost a loved one can respond to the DIHALS/ could this be ALS threads. All the mods chime in.

V, I’d love to hear your parody Xmas letter.
 

KimT

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Mine would have too many naughty words for posting.
 

KimT

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Sometimes I think we are the ones to paint the pretty picture by not really telling it like it is. Remember Chally's calendar? Everyone who posted either made fun of themselves, posted pictures of the past, or posted nice photos of PALS having a good time.

Can you imagine a calendar that depicts some of the horrors PALS/CALS have gone through. I know this sounds macabre but it comes to mind and most things that come to mind end up coming out my mouth.
 

beauty4everyone

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Being neither a Pollyanna, optimist, nor "preacher", I just share the following for whatever it's worth......

After telling a friend about my ALS, she responded with, "Well, you look good." I was shocked. My one time rejoinder, "At least I don't look like road kill", was churlish.
Further reflection on her comment explained it. I prepared myself for the next person. I responded nicely, "Thank you for the compliment"; or "That's kind of you to say that", or "Thank you. How have you been?", etc.

At least they haven't asked: "Are your affairs in order"? (not quite); "Do you have graves picked out?" (I've had them since college); "Designed your tombstone?" (I'm working on it); "Planned your service?" (almost completed); "Written your obituary?" (done - although I'm tempted to compose "The Life I Wish I'd Lived"); etc. As long as I can remove myself from the emotional component, I can respond logically even to those. Though, depending on circumstances, it could difficult.

For years, a friend mails me postcards of them: cross-country skiing; taking cruises; flying to vacationing places around the world, etc. I asked them to. Going means a lot to them and they love it. For them, it's sharing, not bragging. We'd be very disappointed if she stopped.

I'm happy for them. They are taking adventures we chose not to. I regret more what I agreed to NOT doing, than what they're doing. It's my own fault. I never insisted.

I realize others may have a different agenda or oblivious to possible consequences to our feelings. They don't practice "standing behind someone, seeing themselves from anothers' perspective." Long ago, when hurt by a friends response, my husband said, "Consider the source". He was right. She couldn't see it from my perspective. I never mentioned it. We're still friends. It took too much energy to stay hurt. I still rely on his response.

It's wise to dismiss hurtful or one-way friendships. They absorb emotional and psychological energy one doesn't have to give. If one chooses, it can be used to make new friends, or at least acquaintances. Writing scathing, un-mailed responses can free one up to move on. Ritually burning it may help, too.😈 I've done both.

As to the " 'It' could be worse" comment, If we put our mind to it, we could think of many worse situations we could be in. That isn't the point. I believe for each person suffering is suffering regardless of the cause. We can't quantify what another feels. It's the end result that shapes our response. Removing a glass shard from a child's finger can be just as frightening and painful as losing a limb. Since the latter has greater long term consequences, we agree it is worse. The sufferers, independently, may not see it that way.

People are trying to say something encouraging, without realizing how painful it could be. We want our difficulties to be acknowledged. We'd appreciate a hug; a hand patted; a "I will be thinking/praying of/for you; a phone call; card; e-mail; personal visit; food for PALS or CALS, etc.

We don’t want our situation dismissed or trivialized. Compassion, understanding, empathy, appropriate expressions of concern, or kindness, validates us. They encourage us as we cope anew each day.

May it be so. Let blessings abound. B.
 

KarenNWendyn

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After telling a friend about my ALS, she responded with, "Well, you look good." I was shocked. My one time rejoinder, "At least I don't look like road kill", was churlish.
I get “You look good” all the time. I like your churlish rejoinder. I might borrow it.
 

Doglady

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Hmmm, I need to mention a different pet peeve. I registered with my local ALS association and so now get fundraising requests by email from other more famous PALS. I just delete them but gee -whiz. Don’t they have a better source of donors than other PALS?
 

beauty4everyone

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I understand about the solicitations. To help counter current environmental issues, I gave donations to several large, well known advocacy
and animal protection/rescue/ecological groups. I've received everything from "pig rescue, fish, birds, butterflies, plants, bees, gorillas, humans with various needs; religious organizations; foreign individuals; etc.", you name it. Some, I added to my list. Others I'd l like to help, but can't afford to. Makes me feel guilty and sad. And still they come, though fewer since holidays & end of year.

Of course, if I add one, it starts up again. Can't blame them for trying, but all that paper destroys trees:(. I never donate over the internet.

To eliminate stacks of them standing around until I can sort through them, my husband now vets my mail - smart man. He's starting to receive them! When he"s sorting the mail, I think I hear "gnashing of teeth" I shred the excess mailing labels, except the lovely ones 🌺🌼🌸. I doubt I'll still corresponding 100 years in the future. Now, I'm curious. I'll have to count them to see how many 📩letters/cards I'll have to send to use them up ;).

Hang in there - who knows what we may find amusing tomorrow? Blessings, B :cool:

1580188378841.png
 

Samkl

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Karen,
No problem. It's not like there is an overwhelming preponderance of evidence here. Just thought, because of the credibility of the source, it would be appropriate to post.

Ken
Apparently, Amazon doesn’t ship the Integrative Therapeutics Theracurmin to Australia. Has anyone tried another brand?
 

KimT

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I take two kinds. The other one is called Doctor's Best and I get that on Amazon, too. It's less expensive.
 

EricInLA

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This is really bugging me lately. . . the flood of pharmaceutical commercials with terribly annoying jingles that get stuck in my head, for ailments that are light years less severe than what I have. I have to turn the channel immediately, lest I watch these very healthy looking people who apparently have 'moderate to severe' something or other. I'm sure whatever they have is not fun, but nobody is spending money to create jingles or pay for air time to promote a drug that will help me. I think the root of my annoyance is the fact that I have an orphan disease that doesn't attract nearly the same research dollars as these other less severe conditions. And did I mention how annoying the jingles are??
 
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