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**jaime15** · 10-31-2003, 01:16 PM

Louise,
I want to give you an opinion from being a bride, not mother-of-the-bride.
Stand back if you need to, for your healths sake. When you plan a wedding you have in your mind it's all about what "the bride" wants for her special day.
She is caught up in the moment. She still has plenty of time to prepare. Tell her if there is a small detail here and there you feel like you could do, I think she'd be honored to have you help. Big or small.
Whatever you do don't lean on whether your IC will or will not be behaving when the wedding comes. Sept 04 is a long ways off.
Having IC is really no fun. I just don't want you to make her mad before you even know how you'll feel that day.

I hope this helped somewhat.
So sorry if I rambled. :p
Hugs to you. And congrats on being a soon-to-be-mom-in-law. kissing

**louise** · 11-01-2003, 02:41 AM

Thanks for your advice and support. You both make some good points. I guess because I am having such a rough time right now it is just difficult to imagine getting through the whole wedding fiasco. Both hubby and I wanted to lay the facts down to my daughter now so that she is prepared in advance if our participation in the wedding is not what she expects. I guess with she and her fiance making the plans in Maui without consulting us first really blew us away so we were concerned that they really didn't understand how unpredictable and debiitating IC can be. As I mentioned my daughter at first was
strongly emphasizing how important it was that I would be at the wedding and then they plan with their attendants to hold the affair in Hawaii without discussing it at all with us. This just blew us away. So then when plans were changed to hold it in our city my husband and I just wanted to make sure they understood how minimal our part in the wedding COULD be if I am feeling like I am now. My health has really deteriorated over the past couple of years so that is why we were looking ahead to next September.

Thanks again for your input. It is very much appreciated.

Louise

**jaime15** · 11-01-2003, 03:00 AM

Louise,
I hope you feel better. kissing
I want you to be able to participate in the wedding plans. But if you can't then eventually they'll all understand. You can't help it that you have IC. And all the other *fun* stuff that comes with it.
Take care of yourself. And who knows, maybe a miracle will happen between now and next Sept. A cure for this crap. *Wishful thinking, huh?* wink

**louise** · 11-01-2003, 06:41 AM

Hi Jaime,

You have been great in helping me with the wedding dilemma! I know my feelings got hurt right from the start when my daughter and her fiance phoned his parents first to tell them they were engaged. I am very happy for them and especially for my daughter as she has been waiting for "the ring" for a long time. But I guess I had always thought and hoped that when her "big day" came she would phone her Mom and Dad first. So that was the beginning of the steps to the altar!! I never mentioned this to my daughter of course: it would hurt her so much and no purpose is served by telling her. My husband knows I was hurt very badly.

Then when she seemed right from the get-go to understand how the wedding would be difficult for me and said how we could have the wedding in our backyard just so "I" could be there I felt so warm and fuzzy. But as I have said when plans have changed and I feel she has forgotten about her early consideration again I am having a difficult time coping with it all - as you can well see!!

As my husband says, there is lots of time for feelings to settle down and for her to come around and see the light! We have our own anniversary on November 9 and we have asked them to join us for dinner so hopefully that will smooth the troubled waters!

Again, much appreciation for your consideration.

Louise

kissing

**Iris** · 11-01-2003, 07:42 AM

Hi Louise, my daughter just got married in August, so I can understand the feelings of apprehension about travelling, and the wedding festivities, and dealing with IC as well. My daughter was married in California, and being in Washington State, I knew we would either fly, or go went by car, and I was nervous about a flare-up occuring with all the stress and excitement. We did drive, and with advice re car travel with IC, from the IC gals, even though I say so myself, I did very well with the IC cushion, I also had a packback with all my meds in handy, if needed. My daughter also checked with me to make sure about the wedding reception meal, as they are both vegetarians, and she also wanted to make sure I could eat the meal. I think right now your daughter is caught up in all the preparations of the wedding, because it is so exciting, but I am sure she is also thinking about her mum and how IC is going to affect you with the wedding and the celebrations. I know I was very nervous about the whole wedding and reception, but with the help of prayers and God, it went extremely well, and I did not even have a twinge of IC the whole time. I know, I am not in your shoes, and I do not know how badly IC has affected you, and the pain you have, but just try and not get too stressed out with the wedding planning right now, you do have almost a year before the event. We did not, my daughter got engaged last Christmas, and then the wedding was August, but I must say they did a beautiful job of arranging everything and did include us, and my future son-in-laws family in the planning, which did help, I must admit, and they knew I was also going to have to deal with IC rearing its ugly head at any time. I do hope that everything works out well for all of you concerned in the wedding parties, I know it can be so busy and full of ups and downs until the great day itself, take care and hope that it will be a wonderful day for you and your husband, hugs Iris hi

**louise** · 11-01-2003, 10:33 AM

Iris, many thanks for your kind words of inspiration. I have decided that now that we have mentioned a few issues to my daughter and future son-in-law about the guest list, hoping that the affair doesn't get too out of hand as far as size and the fact that we do not want to get overly involved in the planning due to the stress it puts on me, I do feel better about everything. There were some friends we had put on the list that we decided were mainly "our" friends whom our daughter did not know or only knew a little so it wasn't necessary to invite them and as we told them it helps to cut down the number of invitees.

Also, as I mentioned, my husband told our daughter that of course we want to be at the wedding but he has just told her if I am in very bad shape we may only be able to participate in some of the day and not all. For instance, we may stay for the dinner but not be there until late in the evening when the dancing starts.

So, all in all, I think with getting some of these "issues" out of the way now hopefully in the long run the road will now be a lot smoother.
Our daughter seemed to feel that because we gave her a few "guidelines" we wanted to "control" the wedding. My husband told her that was way off base as I don't need all that extra stress. I have had severe IC for years and was recently having a number of bladder instillations until two nurses had great difficulty catheterizing me and I developed a UTI. That was almost three months ago and I am still dealing with the infection. It is mainly due to the Enterococcus bacteria that Dr. Fugazzotto finds in the majority of IC patients he tests. But due to my fairly recent history with C.Difficile, I can't risk taking antibiotics for another six months so for now I have decided to stop taking them.

I was on Macrodantin which was making my bladder and low back pain worse plus the added side effects of muscle and joint pain were only making
my FM and severe osteoporosis all the worse. So as you can see, I have enough on my own plate that I don't need to go helping with filling up my daughter's plate!! I have said that to her in kind words; that the planning of the wedding is mainly up to her and her fiance. If they need some advice or help from us, of course we will do what we can but the majority of the planning is up to them.

Many thanks again. Your words and those of my other "bridal consultants" have helped to put me more at ease. As always, you are a great bunch!!

Louise

kissing kissing kissing kissing

**Katrina** · 11-01-2003, 11:03 AM

I feel bad, I read the first line of your first post here and thought I couldn't help you because I never have been the mother of the bride. This was way more about IC and not being understood what the disease is like than I could have immagined. Sorry.

I hope things work out for you and your daughter. I know what you mean about having to recover. I put effort into things and than have to recover for days because I participated in something that was somewhat out of my normal abilities.

People only see the participation, not the ammount of time I spend recovering afterwards. They don't know.

I know it meant a lot to my mother to be a part of my wedding. It is probably difficult enough that your health limits how much you can participate.

Sorry things are so difficult.

The problems IC causes -- they can be more upsetting to the heart than IC. I hope things turn out well. grouphug grouphug hi

**Iris** · 11-01-2003, 11:46 AM

Hi Louise, I just checked in tonight, and there you were. I am so glad that you feel more at ease, I can read from your post that you are dealing with a lot of health issues, not just IC, my heart goes out to you, IC is enough without anything else. I know family things at times can be stressful, and it is like Katrina said, we all put up a brave front and look like we feel O.K. people just do see how many days it does take to recover. Anyway I am glad that you are at ease more, take care and hugs, and keep us posted how you are doing, love and hugs Iris hi kissing grouphug

**Iris** · 11-01-2003, 11:49 AM

Hi Katrina, your message was so thoughtful to Louise. One thing I keep meaning to say when I see your posts, what a beautiful young woman you are, and how supportive you are to the gals in the IC network, take care and hugs Iris hi grouphug

**louise** · 11-05-2003, 05:41 AM

Hello All,

I want to thank all of you who responded to my post about the wedding plans. And, yes, Katrina, your post among the others, was beautiful and you almost made me cry!! All of your words of wisdom and support and caring really mean a lot to me.
I know most of what is coming out in my feelings IS due to the physical pain I am experiencing.
On top of the IC and other health problems like most of us have I have severe osteoporosis. My middle back area is usually my main source of pain and I had two compression fractures there years ago. My family has a strong history of osteoporosis going back to my grandmother and with having a hysterectomy at the age of 31 I was diagnosed with osteoporosis at 34. Lately it has been my low back that has been the source of pain.

In fact, it was so bad on Monday morning I almost had hubby take me to the hospital but the thought of sitting there for hours I knew would only add to the pain. I was able to get an appt. with my doctor within the hour and he examined me and sent me for x-rays. He thinks it is a pinched nerve but could also be a fracture. I get the results tomorrow. In the meantime he gave me some samples of Robaxacet to take which I mainly take at bedtime as my pain is the worst at night.
So I have been having to rest my back more which means more bed rest.

Thanks again to you wonderful compassionate friends. I didn't expect to get the response I did, but knowing the gals on this board I should have known better!!

Hugs & Kisses,

Louise

kissing bunny kissing bunny kissing

**jaime15** · 11-05-2003, 01:12 PM

{{Louise}}
I surely hope it's not fractured. I pulled a muscle once and acted like I was dying.
I really hope some of your pain eases up. Gosh you have so much of a load to carry. I hope hubby helps alot!! (You seem to speak fondly of him.

) Anyway, let us know how the xrays turned out.
wish I could do more.... kissing

***dyno*** · 11-05-2003, 01:35 PM

Louise,
I also hope it is not fractured, praying for good results.

Weddings can sometimes become a big source of stress in families. Our son got married a year and a half ago. They had the date all set without even asking us if we could get there. We live 750 miles away. It got to be quite the ordeal for a few days while we got this all sorted out. Sometimes our kids just don't think. They get caught up in the excitement of it all. Her folks took care of everything, so of course, we were kind of left out. But it all worked out and we had a great day. In your case, your health has to come first. You have been through a lot this past year, and as has been stated, they are just not understanding what these diseases can do to us. Take care and I am praying all goes well.

Jolene kissing

**Teri** · 11-05-2003, 03:02 PM

I'm probably going to get slapped up side of the head for this but here goes.....

I have married off two children in the last 7 years, while not only my IC was at it's all time worse but I was in a horrible state of depression. A friend gave me the greatest advice ever.....she said "no one gives a **** about you teri. they are there to celebrate with the bride and groom." eek eek

To my suprise and shock. That's exactly what happened. NO, I wasn't the social butterfly that alot of mothers are. But, both of my kids made the kind announcement of "mom and pops, thank you so much for all you've done for us." And, that's all I needed to hear it from, was my kids.
I absoluately refuse to go into my illness at an event like this. If asked questions I just say I haven't been feeling well.

Okay, now comes the planning and you think that you "should" or "shouldn't".....there are only 2 things to remember with this one. #1, there isn't such a thing as "should.' #2, there isn't such a thing as "shouldn't." If they are old enough to get married, they are old enough to make all the plans that need to be made all on their own. Just before my son's wedding 3 years ago we did have one pretty good spat and I told him "you haven't lived in my life for the last 5 years, don't you dare pop up now and tell me what I "should" be doing." The only "should" I have is to get dress and show up." Other than that, it was smooth sailing.

One of the other ICer's went thru a wedding in sept. She urinates every 15 minutes with a bladder that holds 2 ounces and she has not been able to handle any of the pain meds. After it was over (she looked absoluately beautiful) she said, "hey, they came to see Diane and (can't remember his name

) they didn't come to see me." She did, as I did, find out where the bathrooms were in the church and was seated so that if she had to slip away she could without causing a disruption and her daughter did have a short ceremony for her mom's sake.

I have been to Maui at the peak of my IC and I'd do it again in a heartbeat....I was in SOOOOOOOO much pain that we had room service almost every night but the beauty gave me 7 days of such peace.......

PLEASE, don't spend the next 10 months worrying about this. Hell, they might even have a cure by then, ya never know.....

wishing you the very very best kissing and please, don't slap me too hard

**louise** · 11-12-2003, 07:53 AM

Hi TERI,

I wouldn't slap you at all, you have always been there for me and obviously still are!! Sorry, I haven't checked this board in a while as my low back has been too bad to sit here for any length of time. The x-rays show that the same problem with the nerve compression and disk protrusion are the source of the pain. My GP is arranging for a CT Scan to see if it shows the problem more clearly. Fortunately, no fracture.

Now, Teri, are you telling me that I should not be hurt by my daughter and future son-in-law's seemingly lack of consideration for me and my health? Or are you saying that nobody cares how the mother-of-the-bride is feeling anyway so I should just keep my mouth shut, stay in the background and show up at the rehearsal and wedding smiling no matter how excruciating my bladder, pelvis and low back pain are? And I am serious here. I have never been a mother of the bride before so I don't know the proper decorum of how she should or shouldn't act. As I mentioned (I think) I was hurt from the get-go when my daughter thought (along with her fiance) to phone her future in-laws when they got engaged before she phoned her parents. AS you can tell, this has hurt me a great deal and I know for me that started things on a bad course, even though I did NOT say boo about it to anyone other than my hubby who knows how hurt and disappointed I was.

Then re the Maui business, yes, I love the island also - very much. And as I have said to other friends, once you get off the plane in a lot of pain, there is no more beautiful place to recuperate than Maui. But I feel it is a whole different situation when you and hubby are going there for a holiday than it is when you are going there to your daughter's wedding and you are the mother of the bride and as you very well know all that that entails. So that is why we told the "kids" that if they wanted us to be at the wedding they should re-think the Maui thing.

So they did and as I mentioned the wedding is now being held in our hometown. But as I also said my daughter told me the night of the engagement that "I" was the most important person she wanted at the wedding and if we had to hold it in OUR backyard to ensure I am at the wedding that is what they would do. Of course, that sentiment soon disappeared once the wedding and reception place was booked and she forgot to include me and her Father in anything to do with the guest list. Any time we asked them if we could get together to discuss the list, we were ignored. So we finally sent them a letter, laying out that we wanted THEM to do the wedding planning as I have enough on my plate with my health problems, my severe level of pain and a small involvement in volunteer work. We also told them we had hoped they would continue to agree as originally stated that the wedding guest list would be kept to just close friends and very immediate family. We were very surprised when we found out that the children of the groom's cousin's were to be invited to the wedding. Now are they considered "immediate family"?? I don't think so. I feel by my daughter and future son-in-law increasing the size of the wedding they have not kept to their word of keeping this a small affair, if only to make it easier and more comfortable for me on the wedding day.

So, Teri, are you saying that by asking for a little compassion and consideration here I AM being selfish?? Just to bring you up to date, since we sent the kids the letter my husband had a little talk with our daughter as she thought we wanted to "control" the wedding. He said that was the farthest thing we wanted to do as he knows how difficult each day is for me just to do the normal things around the house and as I said a small amount of volunteer work. Lately, between dealing with a constant UTI for which I can't take antibiotics due to the fear of getting C.Difficile again which I was sick with for almost a year in 2002 and could be a life threatening situation if I contract the bowel infection again, the symptoms and pain that go along with not only a UTI but also severe IC plus the excruciating pain I am experiencing in my low back, pelvis and thighs, this is more than I can cope with on a regular basis. Even the B & Os do not touch my pain and there are days when I not only stay in the house all day but I am in bed all day.

So, please, Teri, tell me more clearly so I understand what you are trying to tell me. Am I asking for too much from my daughter and future son-in-law? Actually, we haven't even discussed much about the wedding with them recently as we have decided it is best if we just let them come to us for any advice or help. Also, we have laid out for them the financial aid we are able to allow for the wedding which involves covering all or at least most of the cost of the whole affair. This is in addition to giving them a very generous amount of money as a down payment on their brand new two-storey house as their wedding gift.

So I am dealing with the above plus a 29 year old son who has been having "male" problems for many years for which he can't get a diagnosis and is very despondent and was diagnosed with bladder cancer about six months ago but which has nothing to do with his other symptoms. So I have more to concentrate on and "worry" about than my daughter's wedding. In fact, to share with you, I am very concerned that by the sound of my son's symptoms he may have Interstitial Cystitis which would break my heart and give me a fair measure of guilt to contend with. But he has not been able to get a diagnosis. I even spent quite a while yesterday talking on the phone with Dr. David Wise to get his opinion on what may be causing my son's symptoms.

As I said before, with my low back problem, I can't sit here long and I have definitely overstayed my welcome at the computer today judging by the way my back is feeling.

I want to thank you, Teri, for being so candid and forthright. I did come to this board asking for advice and assistance so I do not take any offense against anything you said. And I definitely do not feel the urge to slap you; if anything, I would like to be able to hug you as I know in the past we have shared a lot of personal grief together and you were there for me many times when I was seriously ill with C.Difficile.

So my bunny friends and I thank you very much for taking the time you did to sit at the computer and offer me your opinion.

Best Regards,

Louise

bunny bunny bunny bunny bunny bunny bunny

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