How do your partners, spouses... deal with it?

[Calli]

I am new here, just got the news today, that it might be IC (biopsy didn't proove it but I have most of the signs so they will treat me with DMSO starting on Monday).

I look at my lovely and we just got together, I moved from Slovenia to Holland to be with him and I feel so bad for him. I know how hard it is if you are with somebody who is ill and feels bad, I was there myself when my mom was dying of cancer.

Sometimes I think it would be better to leave him and go back to my country and do the mercy thing for him not to have to be stuck with some cronical patient. I don't know where I am going and if I am going bad, I don't want to ruin his life.

I talked to him about it but he assures me its for life and supports me, goes to doctors with me and helps me... but I can see it is getting to him. I feel so bad for him. He is the love of my life and we fought so hard to be together and now this. Like a curse.

How is it with your loved one? Any advice? *a big sigh*

[ICNDonna]

I have a question for you to ask yourself: What if he were the one who has IC? Would you want him out of your life?

My husband and I had been married two years when I got IC. We have now been married 32 years and we can't either one imagine life without the other.

Most people with IC do feel better with treatment and many feel good most of the time.

Warm hugs,
Donna

[Sarojini]

Have faith in your boyfriend!! If he says he wants to be with you, then trust him. :)

My husband and I had been married about 6 months when my IC started... and we are still just as happy together as before. :)

[Calli]

Originally posted by ICNDonna
I have a question for you to ask yourself: What if he were the one who has IC? Would you want him out of your life?



I wouldn't leave him if he would be able to move. Never. I would always take care of him.

I am just afraid that I am making his life not better but worse. Yes, he loves me, but I love him so much I don't want to make him suffer or make his life full of restrictions.

Funny, he asked me the same question as you did, Donna, when I talked to him about this last night.

[Sandy N.]

When I married 32 years ago thee was a part in the ceremony that said I will love him and he myself in sickness or in health. Yes at times it can be rough, but we get through it. It sounds like you have started out with a very supportive man in your life.I will be praying for you. Just to let you know , the message boards are filled with supportive and caring individuals..Welcome:welcome:

[sleepyangel30]

My husband and I been married for 8 yrs. he is very understanding and supportive. I love him so much I would not know what I'll do without him. I remember one day I was suffering in pain I was talking about taking my life and he broke down and cried he said I don't want to lose you. At that time I didn't have faith in myself I was taking it really hard. I thought my life was over.

[crystilclear]

There is so much more to you than IC and that pertains to anyone and everyone with illnesses. It doesn't make you who you are. He fell in love with you and it sounds like he's supportive also. Hold onto that. Like Donna asked you and you replied you'd do it for him. Sometimes woman have a hard time letting others take care them them. We are the nurturers aren't we? But you're very blessed to have found the love of your life. I know I have mine. You worked so hard to be together IC can't come between you unless you let it. Every one of us is a unique creation that can not ever be duplicated and that makes us all one of a kind and so special. The way I look at it is my hubby chose me out of everyone to be with and if you have that special man hold on to him. Your love for eachother will help you through the hard times. I have felt that way too. We have been together for 91\2 years and still madly in love despite all the problems I have. He loves and accepts all of me including the sick part. I still feel blessed because I have him and 3 beautiful kids. I realize that there are so many less fortunate and atleast it's not terminal. My father died from cancer 8 years ago. I'm thankful that I am here to raise my babies. I hope everyone has a wonderful day today. It helps sometimes to see things from a different perspective. And when I remember all the things I do have I feel a little better. Take care- Chris :D

[sleepyangel30]

crystilclear you are so right. take care god bless!
:angel:

[VickiB]

Calli, you're right that your condition will affect your relationship with your love. But that's not necessarily a bad thing! Looking back at over 28 years with my hubby, the hardships we've faced, -and faced them together, made us stronger. All relationships will find obstacles in it's path. That's guaranteed! Financial difficulties, illnesses, deaths, etc. We can choose to go our own way at these points, or face them hand in hand. Today, it may be you needing your loved one to carry the load, or make sacrifices. But count on it, there will be times when you'll have to be the strong one and help him through some hard times!

Also, I'd say think positive! Many have found diet & treatment which gave them back their lives! I did,...I hope you find the same!

Vicki

[Annie2]

Calli,

Many of us have had these same doubts. My hubby and I had been married 27 years when I developed IC (almost 2 years ago). I was so very fortunate to have many healthy years before getting sick. Even through all the healthy years, my husband and I traveled many rocky roads but still came through them together. IC has been the toughest test of all.

My husband is about to retire after 42 years of service to our country. He has worked long and hard and made so many sacrifices. We both have. Together, through all these years, we planned and saved for our retirement. Oh, the plans and dreams we had for this time in our lives! It was just about to happen. Then, out of nowhere, IC hit. All of those wonderful plans went out of the window in a heartbeat. I wondered how I could possibly ask my husband to give up all he wanted to do during the last part of his life, all of those dreams he worked so hard for so long to make reality. After sacrificing so much of his life, how could I deny him all he wanted for himself? I really wrestled with this guilt. Then I told my husband I would give him an "out clause" to the in sickness and health part of our vows. I offered him a divorce and told him he was free to go on and fulfill his life's dreams. He said "NO, I meant those vows and I'm not changing them now. I signed up for the whole ride, not just the good part. We're in life together and I want to keep it that way." And so we are going on with our lives because we both WANT to finish our lives together. We are modifying our dreams to fit the reality of the situation. We are finding there are ways to keep our hopes and dreams. Yes, we have to modify things, but it can be done - together! I am feeling better now, not perfectly normal yet, but I'm still working on finding just the right combination of treatments. There is much hope in the research being done. Better treatments and even a cure are possibilities. I daydream about that but until that daydream becomes a reality, for my husband and me, "Plan B" is shaping up rather well.

This has happened to you at a much younger age than when it hit me. Your partner, however, sounds just as committed to you as my husband is to me. He CHOOSES to stay with you because he WANTS to stay with you. That is true committment. It certainly sounds like the two of you have a deep love that is far beyond mere "early love" or infatuation. That is the kind of love that can withstand the hardships of life.

You are in the early part of IC. Some say that is the hardest time. The two of you TOGETHER will get through this. How wonderful you have such a devoted man by your side. We all will be praying you quickly find a treatment that works for you and the two of you can resume the plans you have. Until then, together work on developing a "Plan B" for the 2 of you. It may be changed a bit from the original, but it still can work and be fulfilling for both of you!

Annie

[crystilclear]

That's so beautiful Annie! :D

[SheriG]

Will pray for you Calli...:pray: You have gotten good advice and I just wanted to add my wishes for you to be happy and healthy! (I have a daughter named Callie ) Great name! :thumbsup:

[Ruby*]

Calli,
When I was first diagnosed approx 10 years ago, my IC was very
mild. Five years into my illness it was progressively getting worse.
I married my husband 6 years ago and he has never made me feel not deserving of his love. We have a beautiful 2 year old daughter and some day I hope to have another baby. But, for right now, my IC has taken the drivers seat in my life and I'm doing everything in my power not to let it win.
Sometimes I say to myself that if I didn't have my husband, daughter, mother, father, sisters and friends to help me through
the bad times I don't know how I would be able to cope.
I often think about all the times my husband has been with
me during my many different procedures at the hospital, his help
and support during my recoveries, my very difficult and painful pregnancy and delivery, the panic attacks he has helped me get through, the really awful flare episodes where he has seen me at my ugliest, having to stand up to his family and explain why we can't attend a family function, or why we had to leave early, etc. Even after all this, we love each other more now than we ever have. And that is what I call real love!
So, if you have fought so hard to be together, shouldn't it be obvious that you've found real love and you have to hang on to it
forever? I hope so.
I wish you always have great days, but when you don't, you know
you have a loving partner that will help you get through anything.
Ruby*
:pray:

[blue]

I think ending the relationship would cause him pain! Don't leave a man you love, and who loves you over this disease. There is so much this disease takes away from us, don't let it take the love of your life!

[VickiB]

You're so right blue!

[tigger_gal]

my husband and I will be married 5 years in July..... I was dxed 3 years after we were married.. many, many fights before hand and after.... but it just wasn't IC... He was a drunk... and my IC complicated "his" life.... It got bad I left, he chose me over the beer and he's been sober 2 years.... in the last two years I have been dx'ed with fibro, myofascial pain syndrom, arthritis, sacralittis, and pfd.... he don't understand this disease.... I guess I don't expect him too.... Now hubby has been dx'ed with Hep C geno type 1 w/stage 2 liver disease.. the worst kind.. recently he passed out and I nearly lost him.... I can still close my eyes and see my husband laying in a pool of blood and get the chills.. the reason unknown... but found out that he has hypothyroidism...
any way the long and the short of it is...... you love him.... he loves you..... don't throw away a good thing.....
Remember in sickness and health till death due us part.....
life is a rough road, especially in pain.... He sounds like a great guy...
:kiss:
Brat

[Mimi-in-Chicagoland]

I came down with IC on my honeymoon. Had I know I had IC before I got married...I probably wouldn't have. My husband says it doesn't matter, and he's proven it. We've been married 4 years, and he's my rock. I'm glad I didn't know what was happening before. I still feel guilty sometimes. I would do the same for him, though. Keep that in mind. Would you want him to leave you if he were sick?

[blue]

Calli, why did you take your picture down?

[DeDe Kirby]

Calli -
My husband and I had just gotten engaged when I found out I had IC. I worried for months whether I should marry him or not. However, everyday he convinced me through his day to day offerings of love that he was tough enough to stand by me. He is part of the reason that I am able to face this disease. Don't sell your partner short!

On another note - I have been reading messages all day and this is my first message ever to post. You hang in there and believe in the power of love!

[Marlana]

My husband has been wonderful through all this. He understands so far. I am sure he will break in time but as of now, he is a trooper with me and the 3 little ones. I never had the pain with sex, my last one came 2 days later...wooooo...but a little pyridium helped the worst of it. But , needless to say,, we have been a bit shy since. I wish all luck with this and from what I hear, sexual intimacy can be achieved at times..

[HeatherMac]

Calli
My husband and I have been married for almost 21 years... I was illness free for most of that time... When i was diagnosed with IC last Dec. he has been very supportive ever since.. Pain is in my volcabulary every day now but he never tells me to stop complaining.. Our sons play baseball and he knows i cringe when there is not a bathroom handy for me while at the ballpark...

Give ur boyfriend a chance to "handle" your illness with u... U may be pleasantly surprised!!