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Is This Tacky? Honestly...

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26 replies to this topic

#21 debonair susie

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Posted 15 November 2007 - 09:54 AM

Hi Kelly,
I'm in agreement withSheryl, Janey, Tang an the other ladies.

Ultimately, the choice is yours, but those you are closer to, would be the ones I would share this with at a more one-on-one basis... a time either prior to, or after the wonderful honeymoon and things have settled down.

I congratulate you both on your upcoming marriage!
Hugs, Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#22 truman


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Posted 15 November 2007 - 12:44 PM


Where do you get the bracelets? What a great idea! Let me know.....

It is what it is...........

#23 Shelley Ensz

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Posted 15 November 2007 - 01:14 PM

Hi Tru,

Our Scleroderma Awareness Bracelets are $2.50 each. They say "SCLERODERMA" on one side and "SCLERO.ORG" on the other. They are teal silicone, one size fits all.

Just go to our ISN secure shop -- -- that's also where you'll find info on how to donate in memory or in honor of someone, support research, order terrific books on scleroderma, etc. But remember the bracelets while you're there!

Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#24 barefut


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Posted 15 November 2007 - 04:15 PM

Hi Kelly,

You have gotten a lot of great ideas. Personally, I don't think I would invite scleroderma to my wedding.

About 4 years ago I sent out a family newsletter with my holiday cards to update everyone on us. So much has happened in the past 4 years that I think it's about time for another update.

I am thinking about sending another letter to friends and family to let them know what we've been up to and I plan to mention my scleroderma in it.

It is hard to try to let people know without sounding or feeling like you're fishing for sympathy. But I beliveve it can be done tactfully and in an educational way as well. There needs to be a one size fits all, pre printed, downloadable letter to friends and family. I'll see what I can come up with! <_<

I know there are distant friends and family of mine who might think I am fishing for sympathy anyway, and then there are those who will be mad that I didn't tell them sooner. Sometimes you can't win 'em all.

#25 KarenL


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Posted 16 November 2007 - 06:25 AM

Whoo Hoo Kelly! Congratulations!!

My opinion, since you asked... :D ....I don't think it's tacky to have pamphlets at the wedding, BUT I would NOT do it. If it were me, I would think, Your wedding day should be glorious, pain free, happy, joyous, a respite from the usual days.

I wouldn't want people focusing on my illness. People would see the pamphlets and look askance at each other, maybe whisper and look at you (and hubby to be) pitifully. Yuck. They'd want to ask questions, everyone would be talking about "poor kelly...poor hubby!" and I think you should do that on another day.

As for staying home, ah! It is nice to stay home. Not nice to be sick, for sure, but THAT's your opportunity to tell them gently, "hey, ya know, really, I'd rather be working (would you??) but with all my dotors appointments, (or whatever) hubby and I have decided that right now is the time for me to focus on my health. Sure we need more money like everyone else, but we've decided that my health comes first right now" Or something like that.

I too, get sooooooo tired of explaining my limitations to every single person who calls, sometimes I elect my sister to call the rest of the family when I'm in the hospital or feel really down. I unplug the phone and screen my cell.

Happy wedding day Kelly!! You do what's right for YOU and hubby and the rest of the world can figure it out later.

#26 Lauriejill


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Posted 16 November 2007 - 04:02 PM

Congratulations Kelly ....have a happy wedding day. May you have a long and loving marriage.

I will agree with most ...to keep Scleroderma out of your wonderful wedding day.

Although I think it is wonderful to want to educate people and have them donate etc. it will be taken by your guests in so many ways that you may not recover easily from the feedback. I know most people are warm and loving and wish you the best but there may be others who just want to put you down for "force feeding" your stuff on them.......or be judgemental or be whispering behind you back and who wants to deal with all of that negative energy.

I agree that you should tell those closest to you and your loved ones at appropriate and easy times when you can have a REAL conversation.... and then have them tell others as they see fit. I wish everyone were supportive and understanding of what we have to go through but the truth of it is that there are those who will never understand or have "small minds" or their own problems of thinking ....you probably know what I mean.

Keep smiling.....


#27 truman


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Posted 17 November 2007 - 03:09 PM

Thank you for the info on the bracelets Shelley............ :)

It is what it is...........