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Is This Tacky? Honestly...


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#1 KELLYB.

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Posted 13 November 2007 - 06:28 PM

Hello to all!! Starting to get cold up here in MI. I know I'm not the only one starting to feel it, try to take care and stay warm :)

So...I am FINALLY going to marry the love of my life, eight years later :D :lol: :P !!! Extremely excited, starting to plan, etc. etc.....

So, I would REALLY appreciate some feedback on this one. Because I would hate to come off being tacky or being in bad taste on one of the most important days of my life! Your comments are basically what will make my decision... no pressure or anything ;)

OK, so my soon-to-be-husband has a HUUUUGGE family. Only a select few actually know that I have Scleroderma, and know a little about what it is. Many others, however, know that I am "sick", but who knows what swirls around and what they have heard. Some, may not know at all. I have had a couple of the aunts or cousins??, (I can barely keep them all straight), ask me where I work, or what I do. When I told them I stay home, they were kind of like "Oh, THAT must be nice." Or, "I wish I didn't have to work." Not neccessarily (sp?) sarcastically, but not knowing that I didn't have a choice. Therefore, leading me to believe they were not aware that I was sick at all.

My question is this. Would it be tacky or in bad taste to have, at our reception, a pamphlet about Scleroderma? I mean, I kind of think in the back of my mind...I don't know about that. But then again, what better way or what better time would there be to inform his whole family, and even some friends that don't really know too much about it.!? What better way to raise awareness?! Right? Or not? This is truly a toughy for me. I need some help.

Please, be honest. Also, ask yourself if that would be something you would do, or not.

Thank you all SO much, I am looking forward to any response I can get :>

Kelly B.

#2 Sheryl

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Posted 14 November 2007 - 01:11 AM

Hi Kelly, First of all congratulations. I hope you have a long and prosperous marriage. If it were me I would not have phamplets at the wedding. This is your personal choice though. I feel there are so many people in my life that don't know and I can relax around. If I am having an off day and they say something I might explain indivually to them what is going on with me. To throw something like that on people at your wedding and make them feel sorry for you or say oh my dear. I didn't know. And want to tell you about others they may know with it. I would want only happy thoughts brought to me and from myself to others. Later at another gathering or one on one is the best approach that I have found. Some people you want not to know so you don't feel like you are constantly explaing yourself to them. Have a great day. Sheryl
Strength and Warmth,
Sheryl

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#3 susie54

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Posted 14 November 2007 - 02:37 AM

Congratulations on the wedding!! Just my opinion, but I would get as far away from scleroderma on your wedding day. It is a day for celebration and most everyone is attending to share that joy with you and future hubby. Later after the wedding, you can tell the people who are close to you about your illness and how it affects you.
The people who care will listen.
HAVE A GREAT WEDDING DAY!! Susie54

#4 Katherine

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Posted 14 November 2007 - 03:01 AM

Oh how wonderful .. LOVE IS GRAND.:)

Spend a little less on the wedding
and a little more on the :)......honey moon...:)

I agree with sheryl. that day is NOT about scleroderma .
your guests will know this.

Do you know when this day is ?

#5 PrincessB

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Posted 14 November 2007 - 03:13 AM

Congratulations!

I don't know if you have a wedding list, but you could have a charity one, the charity being a scleroderma one. That way people would be like "Oh, so that's the illness she has" and maybe investigate it for themselves. Just an idea. Otherwise I don't think I would give them out at the wedding either, although of course it's your choice. It's not tacky, that's not it, it's just that you don't want to spend your whole day talking about that. Of course you probably would anyway if you had it as your wedding list charity too, so I'm obviously talking rubbish. Tough one.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#6 Patty

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Posted 14 November 2007 - 03:26 AM

Hi Kelly,

First may you and your husband to be have a wonderful life together.

I feel that any way to let people know and maybe get an idea what scleroderma is, is great. Maybe in your toast to your husband you could say something about how wonderful he is and loving nd that inspite of you having scleroderma he didn't run but took you as his wife and for that he is your hero or whatever works for you. Maybe you could have some pamphlets handy so if people ask you or your husband about it, you could give them to them.

Please keep us up to date on the wedding plans. I love reading good news around here!!
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#7 oddone

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Posted 14 November 2007 - 04:03 AM

What about having the little "gifts" or "trinkets that people usually have sitting at each plate of the reception I beleive they are called bombadiers?
An idea.....
My wonderful friend, kind of adopted brother, had cards made up saying "in lieu of bombadiers(SP?), we have made a donation to the Cancer Society in loving memory of ........". It was very touching, and I thought, extremely generous.

Perhaps something similar to the following:

"In lieu of a bombadier, we have made a charitable donation to the International Scleroderma Network, to strive to continue with research, awaerness and education on this rare disease."

Have a pretty cardstock with a scleroderma ribbon printed on it, set like a placecard in front of each plate, perhaps with a Scleroderma Awareness Bracelet attached.

If it is something close to your heart, and done so charitably, I don't think anyone would find it tacky.
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#8 oddone

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Posted 14 November 2007 - 04:12 AM

Sorry forgot to add...
If your guests want to find out more about Scleroderma, I beleive this website address is on the bracelet. This way, it doesn't have to be directly discussed on your special day, but it will give you a feeling of charity and accomplishment...... making your day even more special....................and rightfully so.
Gook luck!
Oddone - Spouse - 38 yr old Husband diagnosed October 2006, Diffuse Systemic Scleroderma
Normal PFT(July 06), ECG(Nov/06)

#9 rlbrussell

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Posted 14 November 2007 - 05:21 AM

I like this idea. I have seen it done at other weddings for various charities close to the couples heart.
Rosa
Diffuse Sclero
dx Jan 2006

#10 Sweet

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Posted 14 November 2007 - 07:05 AM

Hi Kelly!

Congrats! How exciting!

I would not have them at the wedding or reception. What I would do is make sure in the guest book you ask that everyone put their addresses, and then I'm mail them all something at a later time, with a nice loving letter, and include the spoon theory as well. If you don't know what that is, let me know and I'll make sure you get it.

Just my thoughts. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 Margaret

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Posted 14 November 2007 - 07:34 AM

Hi Kelly ,

Just wanted to wish you * Congratulations * I am not sure what I'd do.....I'd be the person to think about it long and hard before deciding!!! I do agree, though, spend the most $$$ on the honeymoon!!!

Take care, Everyone.
Margaret

#12 truman

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Posted 14 November 2007 - 10:52 AM

Sheryl:

I agree. A one on one basis has always proven to be less stressful for me and those involved. I have found that on that plateu, people are more acceptive of the situation and more involved in knowing what it's about.

A wedding is a separate and special event; a day to revel without a thought in the world. Great food, good music, lots of dancing and everyone together. That's it in a nutshell.

One could lay out pamphlets of cancer, lymphoma, diabetes, etc. Pamphlets should not be present.

Just my opinion....
Tru

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

#13 jefa

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Posted 14 November 2007 - 09:52 PM

Just wanted to throw in my congratulations. I think your special day should be your special day. I have a feeling you will be very happy together.
Warm wishes,
Jefa

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#14 LisaBulman

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Posted 15 November 2007 - 02:31 AM

Hello,

Congrats!! That is fabulous! Weddings are so much fun and stressful so remember to take care of yourself during this crazy time.

I am not sure what your situation is, but for your shower, I know you don't plan it but you could mention it to your friend or family member that might be throwing one for you, that you would like them to make a donation to the ISN and research in lieu of gifts. Of course, if you need the gifts then get the gifts. If not when the invites go out they could include something about sclero with them.
A few years back I did this at the holiday time of year. People kept asking what I wanted and I told them to make a donation in my name.

Just a thought.....

Hugs,
Lisa
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#15 janey

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Posted 15 November 2007 - 04:30 AM

Kelly,
Congratulations!!!!!!! I wish you and your up and coming hubby a wonderful wedding and even better marriage. Please make your wedding a joyous occasion. Leave all the stuff that doesn't make you happy at home. Scleroderma occupies enough of your time, brain power and thoughts - so take a break and give everyone else a break as well. You want people saying "What a beautiful bride!", not "What a beautiful bride, but ...."

That's my two cents worth.

Wishing you a long and wonderful marriage!
Janey Willis
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#16 Sam

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Posted 15 November 2007 - 05:28 AM

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

#17 Clementine

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Posted 15 November 2007 - 05:54 AM

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

#18 Sweet

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Posted 15 November 2007 - 05:59 AM

Jen,

That is such a great idea!!! I might try that with my in laws.

I thought I saw a bracelet on Curt. What a good man!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#19 KELLYB.

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Posted 15 November 2007 - 08:46 AM

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.

#20 KELLYB.

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Posted 15 November 2007 - 08:55 AM

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.