KELLYB.

Is This Tacky? Honestly...

27 posts in this topic

Congrats And I agree too with the other's This is YOUR Day. Take care, Sam


Sam

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KellyB,

Congratulations!!! I am kind of a newly wed! It's great to find the one and settle down.

 

I have to agree to keep the scleroderma stuff out of the wedding. One thing you can do to raise awareness within your family, instead of exchanging birthday gifts, holiday gifts, etc, ask them to make a donation towards Scleroderma research! In return, you could donate to their favorite organization. I know it's fun to give and recieve gifts (especially with younger folks), but sometimes other things seem more important. My husband's been wearing a Scleroderma awareness bracelet for several months now!

xoxo,

Tangelo

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Thanks to everyone who has responded, all your thoughts are appreciated. You all have great ideas as well. I would never have thought of a few of the suggestions that were made!!

I would like to say though... the thought never really crossed my mind that it would "take away" from our special day. I am also the LAST one to want people to feel sorry me!! I am one of us who NEVER plays up the Scleroderma card. I almost feel uncomfortable talking about it. When somebody asks how I've been feeling... I keep it short and sweet & move on with the conversation as quickly as I can. I HATE for people to feel sorry for me because I don't feel sorry for myself, you know? I guess I just felt like his huge family who consists of 14 aunts & uncles plus spouses...I would have to guess about 35-40 cousins, and their kids... :o I just thought that I would feel better giving them the opportunity to have factual information available to them- say, in the bathroom, or at the bar (you know, those little cardboard thingys that hold pamphlets?) That way, there will be no more whispers or rumors about this "mysterious" illness.

Now that I have recieved so much input from all my friends here, I do have other ways to go about informing. I guess I still have to think about it, ultimately, it's a decision we will end up making together.

 

THANK YOU ALL SO MUCH FOR YOUR THOUGHTS!!!

It is greatly appreciated.

 

It's FREEZING here today, staying under my blankie all day :D

 

Kelly B.

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By the way, I LOOOVE the idea of more on the honeymoon, you know, make it very nice and romantic and all...except for the fact that he will be sharing me with 3 other boys!! We will be taking "the boyz". Our beautiful 8,6, & 5 year olds. We went to Miami a few years back, and promised the next time we would take them with us. What better way to celebrate our "new" family status by doing Disney, as a family!! They are extremely excited, so am I. It may however be more stressful then relaxing...I'm staying positive though. On the bright side, we do have babysitters available while there. My cousin and his wife and kids just moved down there a few months ago, so they have volunteered to sit whenever we want to get out alone. I'm hoping we can sneak a couple romantic rendevouz in there somewhere :P

 

Take care,

 

Kelly B.

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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)

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Jen:

 

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


Tru

 

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

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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.

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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.


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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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.

Peace,

Karen

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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.....

 

Lauriejill

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


Tru

 

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

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