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KELLYB.

Is This Tacky? Honestly...

27 posts in this topic

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.

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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

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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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

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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 ?

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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?!)

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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.

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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)

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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)

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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

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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)

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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

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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...........

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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


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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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

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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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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