Are there "TRIGGER" words in your house?

[Teri]

Are there words that come out of the mouth of your partner that makes you want to shake them till they turn purple???????

One of my worse trigger words is "get a job"...I swear, when he says that I could kill <img src="graemlins/scream.gif" border="0" alt="[scream]" /> He watches me lay on the bathroom floor every morning for 2 hours waiting for my pain medication to kick in. He watches me struggle to get the things done that I DO get done. He NEVER says "Oh, the yard looks nice, did you work on it today"......or "geez, the kitchen floor looks great"....or "thanks for picking that up for me".....for someone who is in chronic pain almost every minute of my life I DO get a hell of alot done around here and what I get done is never acknowledged.....it's always "why can't you get a job to help out". Dang IT mad.gif I AM helping out!!!!!!!!!!! He's just too dumb to see it!!!!! He's also too dumb to see that my SS check is probably more than I would beable to bring home in a month due to calling in sick!!!!! This man has lived with this since 1995, you'd think he would have caught on my now. I told him last night if those words ever come out of his mouth again his life may be in danger mad.gif mad.gif

So, what words trigger YOU <img src="graemlins/baby.gif" border="0" alt="[baby]" />

[yvette]

Well When I was "married". The words that triggered me were...
12.) You've got to keep reminding me if you want me to get it done for you.
11.) Stop naggin me to get it done for you.
10.) I'll give you the money next week.
9.) I'll do them/it tomorrow.
8.) I'll take it out later
7.) I promise to pay you back.
6.) Why don't ever buy anything good to eat.
5.) Why? What day is trash day?
4.) Do you have any money I can have for gas/lunch/new clothes/tolls?
3.) I forgot.
2.) I don't know what happened to it.
and Number One....
I'm sorry (with no sincerity behind it)

It a wonder homocide wasn't committed with some of these coupled with the sitations I had...I was the sick one and practically the sole bread winner/provider. He was the healthy one, and lived like an overgrown teenager.
mad.gif <img src="graemlins/scream.gif" border="0" alt="[scream]" /> mad.gif <img src="graemlins/scream.gif" border="0" alt="[scream]" /> mad.gif <img src="graemlins/scream.gif" border="0" alt="[scream]" />

It (he?) Made me a screaming, crazy woman more than once with those words!!!

y. smile.gif

[Teri]

WOW <img src="graemlins/scream.gif" border="0" alt="[scream]" /> #3 and #1 are REAL KILLERS mad.gif <img src="graemlins/blah.gif" border="0" alt="[blah]" /> <img src="graemlins/scream.gif" border="0" alt="[scream]" />

[darlene]

I have a new twist on triggers. It's not what my husband or family said to me, but what my doctor(gastro) said to him about me. I have crohn's disease, which is a chronic, incurrable, inflammatory condition of the gastrointestinal system. I have to tell him about all of my meds, so he got to hear my story of how my IC pain is making my life miserable. when I told him that I was going to a pain clinic, he said that was a bad idea, because I would get addicted to the pain meds. My husband sees my gastro for his gastric reflux. He told my husband that I should just accept my conditions, and move on with my life. Easy for him to say! He doesn't wake up every morning with a bladder on fire, abdominal cramps, nausea, and endless diarrhea. Don't you ever wonder what your doctors say about you after you leave the office? For me, this was a chance to find out.

[yvette]

OMG Darlene, I hear you there. My last uro told me to my face (my teary-eyed face at that)

"IC is not a disease...it's an affliction. So get over it and get on with your life".

Um, OK. So did I mention he's not my uro anymore?!? eek.gif

[darlene]

Yvette, did he ever say what the difference is between a disease and an affliction? If IC wasn't a disease, Kara would be having a much easier day than she will have to endure. Her bladder didn't shrink down to 30ccs from a mere affliction. If doctors don't get it, it is going to be difficult getting family and friends to believe us.

[yvette]

Oh I didn't let him get that far, but his statement was followed by how IC isn't fatal..."ya know what I mean, its not like you'll die from it!"

Well whatever, nevermind that his associate use to crack jokes about my weight when I went in with the nurse. ANd I wasn't fat by any means (I was size 7/8) and at 5'6". And his other associate was indicted for falsifying research data......

At that point I didn't give a XXXX for explanations. Or for his final medical; advice at the end of my visit (my last with him), he commented I really needed to go see a psychiatrist...ugh.

All that matter now is that I have THREE urolgists that know I have a disease and are helping me with whatever I need.

y. <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[SelenaandAj'smommy]

eek.gif HOLY CROW!!! Ill tell you what between "get a job" and " You never clean" or I'll do it later" theres, "Its your turn to look in on the kids" and "Are you gonna cook", How come we almost never have sex?" and "God sometimes I cant stand you" <img src="graemlins/scream.gif" border="0" alt="[scream]" /> Yep, Soometimes its true. Trigger words really cause things to get out of hand around my house too. frown.gif

[Shelleynz]

The worst trigger words I've ever heard were from my doctor too. He called my pain "fictional." Sick as I was, I snapped that my pain wasn't fictional and he was just saying that b/c we didn't know what was causing it. He apologised and treated me with more respect after that.

<img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> I love these new Graemlins.

As for the "it's not fatal" comment, I used to say that I wished it was so it would put me out of my misery. I never forget the day a doctor told me there was no research going on. I almost, deliberately, drove over a cliff on the way home after that.

I hope I haven't scared any new comers with this post. All this happened 7 or 8 yrs. ago before I found the ICN and got some good treatment.
Shelley

[Q]

Anytime anyone insinuates that this disease is my fault, that really ruffles my feathers. Doesn't mattter if it's my boyfriend, my best friend, or a doctor. I didn't ask for this, and I'm doing the best I can with it, but it does not help to have someone counting the number of salt pellets I consume and then condescendingly suggesting I am to blame for this pain. As far as I am concerned, they can all kiss my cute little salt loving tush. I don't like this any better than anybody else, but it took me a year and a half to convince myself this wasn't some horrible punishment god had inflicted on me for that beer I drank in high school, and I'll be damned if I'm going to let anyone talk me into a uselessly guilty conscience

oh, and the word benign really gets me going (as if a painful disease is acceptable just because it won't kill you). mad.gif

[Lady J]

Before my IC and PFD were diagnosed- I had an idiot piece of you know what gyno who said that my clitoral pain came from touching myself and that if I did not take the constant antibiotics that he was perscribing when there was never an infection that I was irrsponsible.

As for my mostly very sweet hubby, he gets to me when he tries to get me advice from his therapist who does not know me. He means well but man, he says some dumb stuff. He also gets to me anytime he complains about our wonderful little dog who is my baby. He hardly ever does this anymore because he and and the baby have really bonded but when he does it, it breaks my heart, I just don't love like that.

[Teri]

Geez Lady, my hubby has been bring me home phone #'s from well meaning people who have been helped by so and so and I have told him when he can bring home a # where we BOTH can get help, then I will be interested but until then, let me deal with my disease in the way I CHOOSE TO, not the way someone else has or suggests I should do. I am DONE dr hopping....I can not be let down by another dr.

Christine~ when my husband says "I can't stand YOU " ALL hell breaks loose in this house. I used to let it blow over because I know that he reaches a point where he just can't deal with it anymore just like I do but those words are NO LONGER ALLOWED in my house because they cut like a chain saw and they can never ever ever be taken back or forgotten. I am learning to pick my fights now but those words are an instant trigger and I go off like a loaded cannon. One of these days he will say them and the next time he comes home I will be gone.....I have a history of dissappearing.....he'd never find me till the credit card came. Sometimes I think that's the wake up call he really needs confused.gif I'm just tired of trying the same things and never getting different results <img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

HUGS <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> to all~

[wornout]

the words one person said to me ...but now regrets saying it to me...they may still think it but would never day say it..."I would be better by now!"

[Kelli]

I just have to respond to the "it's not fatal" remark. If someone ever told ME that, I would respond by saying "You're right, it's not fatal to me, but it may be fatal for YOU!!!

See what they have to say to that! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />

[darlene]

wornout,
Did he/she say why they "would be better by now"?

[peiti]

i really hate when i have to eat with my mom, she is just clueless sometimes. she said something like ' why can't you eat this' or ' who said you can't eat that' like i don't know anything about my own body and illness.
i tried to explain to her that some food would trigger my pain in the bladder. but i didn't think she understood. i found out trying to explain our pain to non-icers is very difficult. it is not like a cold or diarreah that everyone has at least experienced once or twice in the life time.

[yvette]

Yup, I almost forgot that one...

"Try not to think about it so much, that only will make it worse."

hmmmm....right, if I don't think about it so much I can "will" IC to go away......okay, whatevah! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[lisa35]

Here is one of my all time favorites. My boss said "Hmmmmm, your bladder? That's a long way from your heart". What he meant was...it's not going to kill you. Somedays I wish it would.

<img src="graemlins/toilet.gif" border="0" alt="[toilet]" />

[buana1]

My favorite is "I don't like to use public restrooms so I learned to 'hold it'."

As if I enjoy using public restrooms; like I don't try to 'hold it'!

[NB]

i have another to add to the list.
I just love it when my boyfriend of all people says "going to the bathroom again".
He sees me get up sometimes at 3:00 in the morning. He was there when the infections started, then turned into IC.
I get up from watching a movie or just from hanging out to go pee. Maybe 10 min. later i get up to go again and he says that as if it's something new. I mean, what's the point in saying that!!! He has a nastly annoyed look on his face when he does it to which really maked me mad.
I've had three tests that my Uro suggested that i knew wasn't related to my symptoms so of course they came back normal. So i guess my b/f just thinks i love to whine. But i go in for a cystoscopy, hydro, and biopsy on thursday, and that's the test i knew i needed all along. If they don't find anything, i wonder what kind of remark i'm going to get from him after that.
Oh, and someone mentioned the unsincere apologies, he's the King of that. UGHHHHH!
mad.gif

[Chrissypoo]

The worst is when your kid does something not-so-swell or not-so-smart - and when you note it to him, you hear him say "I know" in that defensive or dismissive way . . . when obviously he didn't know or he knew better in the first place (which, by the way, is a good comeback to those words . . . "No, you don't know b/c you either didn't know or you knew better" - My 11 year old hasn't forgotten that response! tongue.gif

[lmeyers]

Hey all,
So this Trigger section continues, as I think we all need this.. My turn, How about the hubby telling you ,this is not the life I had planned on for both me and our children.. And why aren't you fixed yet? The yard is not as clean as you used to keep it, and how are we ever going to be able to afford college for the boy's or even vacations.. This I got tonight after my 2nd day of those new 3 hour cocktail installations, that are making both my IC and IBS/ IBD symptoms so bad.. And I have been tring to do this and not take anything for pain.. Also the Dr.. does not for some reason think I need it, because there is lidicaine in the cocktail, so it should'nt hurt... Laura M

[Teri]

What I'd like to know is WHY don't they notice what we DID get accomplished that day?????????

I am NEVER told, the grass looks nice. I'm glad you felt well enough to go to the grocery story. What do you mean I can't have a bj? it's been weeks........

I manage to take care of my home (not as well as I use to) and a cottage on the weekends. We have 5 adult kids with partners, 10 grandchildren....who in the he!! does he thinks feeds them? Where does he think the tp comes from? The paper plates, etc etc etc....

I have finally told him to talk to a lawyer because I just can not stand this man who thinks he is going to walk in the door some night and I am going to be this drop dead georgous sex fiend <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> with the perfectly cleaned house and dinner on the table every night....it's just too hard any more...................he's always reminding me how hard he works everyday, and I completely know and understand that. Well, he doesn't know how hard I work all day just to friggin' stay alive <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> I've just had IT <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[Jazzy Baby]

My husband has this disease, lmao, its called laziness. Yeah, you know, the first thing a man learns how to do, be lazy, like his daddy. Well, mine cant even pick his socks up off the floor in front of his chair. His favorate words are, I would do it, but I dont know how. Yeah, and I have let him get away with it for 7 years now, well, I am over it. We are on a 3 day fight, and I am not stopping untill he grows up.
This is why, the other night we were watching tv. Satellite had nothing on, so I told him to switch it to regular. It wasnt coming in. OK, so, he says "what do I do to get it to come in". He just got this antenna, but he doesnt know how to work it. OHHHHHH, I was soooo mad!!! mad.gif So, I got up, stomped over to the antenna, and moved it, while giving him a nasty look. His reply is, "what" confused.gif Like he doesnt know.
So, then the very nest day, we went to Meijer to get a new garbage disposal because mine broke. We also got some shower heads. On the way home, I said are you going to put the disposal in, or are you going to call your friend Shannon to do it. He said that he would have Shannon put in the disposal while he did the shower heads. Big Man, can put in shower heads. I said that I could put in the shower heads, shoot, our 5 year old could. He said that he could probably put in the disposal, but if he plays stupid, than someone else will do it. <img src="graemlins/eek.gif" border="0" alt="[eek]" /> <img src="graemlins/eek.gif" border="0" alt="[eek]" /> Wrong thing to say to me. This is what started the fight. He actually admitted that he is a total jack@ss. Can you believe this!!!!!!!! mad.gif
So, as of right now, he has no clean cloths, Me and the kids have been going out to eat, and there are 6 pair of socks in front of his chair. I am done. I am not raising 4 children. He is 30 years old, and I am tired of hearing, "but I dont know how". Bull honky. He has never changed a diaper, given a bath, fed a baby. None of it. I have done it all, he can atleast take care of himself. I am on strike. Do any of you have this problem with your husbands???? <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[susie]

Hi everyone, yes I have the same problem with my husband and 14yr old son. They are both so lazy. My son gets it from his dad. He see's that his dad does not have too do any house work,so he thinks that he can act just like him, and I have had all that I can take.
It's so funny, my husband will see our sons faults "being lazy" , but he does not see his own.
He does work hard outside in this awful Florida heat, but I just don't see why he can't at least pick up his own dirty socks.

MEN......GO FIGURE.
Susie

[lainie]

At last!! people who understand..unlike fiance..i haven't worked since Apr. benefits from work just ran out and now have file with the govt, now on day 3 of fight..his brother's getting married in Dec/03..we have been thinking about going away too... <img src="graemlins/blah.gif" border="0" alt="[blah]" /> <img src="graemlins/blah.gif" border="0" alt="[blah]" /> <img src="graemlins/blah.gif" border="0" alt="[blah]" /> well, can't afford it so today he say"oh, won't be working by next Dec?" like I'm lazy or something! doesn't matter how much they say they understand, we remember every little "dig" whenever we look at their mugs..at least I do... so all of you are not alone with your anger!

[lainie]

in my rage, i forgot to mention that his brother is getting married in Mexico and expects us to be there! so sorry about the confusion! Lainie

[Teri]

thankx for the smiles you guys <img src="graemlins/lmao.gif" border="0" alt="[lmao]" /> I thought that the first thing a man learned to do was fart and belch, THEN be lazy biggrin.gif biggrin.gif biggrin.gif

[dentalchic2002]

o yes..been there, done that..i ahve had problems with husband not believeing me, holding me down in bed becauase iwas always going to bathroom..he said don't think about it.......yeah..right..well, i'm leaving him but that was only part of the reason..but he didn
t support me....all in my head..i wish it was all in my head...so i know how u all feel...

[lainie]

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hi dentalchick..just thought I'd let you know that I am thinking of ya! Your hubby doesn't seem to be very helpful, most men don't realize what we go through until they go through it, guess that's why they don't have the babies..so typical! Just wanted to let you know that you're not alone and this isn't all in your head, like we've all heard at one point or another...I get support most of the time but when it disrupts any plans that he wants to do, then I get "the look"...We were thinking of going on a vacation and I was worried about finding bathrooms and wondering if it would be worth it and he says "hey you will be having so much fun and we'll be so busy, you won't even be thinking about your bladder!" Well, hey maybe I should just stop obsessing about my bladder and get off these disability payments! MORON! Sorry about my litte tangent! Thinking of you! Lainie : <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[Teri]

That's FUNNY biggrin.gif "maybe you will stop thinking about your bladder".....haven't studies showed that men think about sex once every 8 minutes or something really really stupid like that <img src="graemlins/cussing.gif" border="0" alt="[cussing]" /> <img src="graemlins/cussing.gif" border="0" alt="[cussing]" />

And, I'm taken ALOT of vacations and MY bladder and all of it's problems ALWAYS go with me, no matter how much fun I'm having <img src="graemlins/toilet.gif" border="0" alt="[toilet]" />

[Jeremy]

Wow...I thought I would chime in on this, but since I'm a member of the sex being bashed I don't think I stand a chance. I sure hope my wife doesn't feel this way about me. <img src="graemlins/eek.gif" border="0" alt="[eek]" />

Jeremy

[KBee42]

Well, Jeremy, as long as you aren't holding her down on the bed and claiming it's all in her head you're probably safe. wink.gif

I think that there are a lot of guys out there who are primarily worried about how IC affects them, and not at all concerned about how it affect their wives or girlfriends.

My husband is the perfect man and has worked very hard to learn about what it is that I'm going through. He got rid of judgmentalism very early and takes impecable care of me. He's just wonderful.

I'm sure you're a husband like that. smile.gif And plenty of wives I know suck. I'm sure their husbands sit around and talk about "the shrew" or whatever.

You're just getting a glimps into female unhapiness. I'm sure they didn't mean that all guys are horrible, just the ones that these people specifically need to depend on and who aren't being understanding or dependable.

<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

Do you have IC or does your wife or daughter or something? I'm sure that healthy wives can be just as blind to the pain as healthy husbands can.

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Hi! smile.gif

[Jeremy]

I have IC and my wife has muscular dystrophy and TMJ, so we both have to be very patient with each other when we have flare-ups.

The one thing I've noticed about our relationship compared to our friends who have the same type problems listed here is that one or both members of their relationship does not treat the other with respect in some fashion or another (leaving socks on the floor, asking about the other's daily activities, not giving praise, not giving attention, etc.) The one being disrespected allows it to happen, figuring it won't happen again, and it happens again, they don't nip it in the bud, figuring it won't happen again, and the cycle continues.

Several years later, the person being disrespected all those years finally gets tired of it and expects the other person to change thier "habit" immediately when they should have been demanding it all along. We are creatures of habit and it's very hard to stop habits (i.e. drinking, smoking, doing drugs...leaving your socks on the floor can become just as easy)

Yes, we're adults and should have more respect for each other than this, but each of us has to have respect for ourselves first and EXPECT it from our partners.

Jeremy (Jumping off his soapbox, now) redface.gif

[KBee42]

Jeremy,

I completely agree. My husband and I talk regularly and are very vocal about what it is that we need. And sometimes, if there's a habit that we didn't realize was creating a problem we will start of the conversation, "This is going to be my change, and it's not going to be fair. I don't expect you to go back and undo what's be going on, but I need to ask for you to help me change something."

Conversations are the most important thing. And the most important aspect of our marriage is the respect and the love. Everyone has moments where they don't particularly like their spouse, but if the respect is there an ugly cycle of dismissivness won't build up.

It sounds like your marriage is a very good one. smile.gif I'm happy for you.

[Jeremy]

We do have a very good marriage. Recently, we celebrated our 10th Anniversary, but things haven't always been rosey. The first 5 or 6 years were very difficult. We were very young when we married. I was 18 and she was almost 21. We were still changing as people and there were things changing about me that she didn't like and there were things about her that I didn't like.

Regardless what anyone thinks, marriage and love is not like the movies. It takes work on both sides to make it work. The one thing that helped our relationship out the most was learning to not make a big deal out of the little things; for instance, how a person folds or hangs clothes, the order of how they get ready for work in the morning, their favorite phrase that they have for every situation, or maybe their pet name they call you that you can't stand.

Each party has to have respect for the other in every situation. When you are doing something you have to think, "Will this bother my spouse". If the answer is yes, you shouldn't do it. Each party has to make concessions and compromise. You can't always have it your way.

Each party needs to make sure that the other person knows they care about them. Life is hectic. We are busy people. We spend a lot of time at work, with the kids, paying bills, and cleaning house. Sometimes it's very difficult to find time for the "one" we love. We have to make time.

I learned all this "IN" my marriage, not before. I have screwed up a lot. I have forgotten important dates. I have said the wrong thing at the wrong time, but I worked on it. I sincerely asked for forgiveness from my wife. I sent her flowers at work for no reason at all. I mail her cards at work for no reason at all.

The funny thing is, I still screw up. I still say the wrong thing at the wrong time and I still sincerely ask for forgiveness, and I probably always will, but it's all a part of the job of being her husband. Her love is my payment, and sometimes I think I get paid too much.

[susie]

Jeremy, all I can say is that your wife is a very lucky lady to have a man like you!!!!!
My husband does not understand ANYTHING about this disease, and I mean ANYTHING.
He will demand sex from me, even though I have told him a million times that it hurts me something awful. He tells me that I am nothing but a drug addict and that IT could not possibly hurt as bad as I say it does.
I have given tons of stuff too read on IC, but it does not even phase him one little bit. If I had somewhere to go believe me I would, but I don't.
Sorry to be such a downer, but sometimes it just really gets to me especially when I know that their are some great guys out there.
Susie

[Jeremy]

Susie,

I have several "friends", and I use that term lightly, that are that way with their wives that don't have IC. It's difficult for those women to deal with, so I couldn't imagine what it's like to deal with a man who demands sex from a woman who has IC. It sickens me that I'm actually in the same gender with men like this. It gives men a bad name and that is why some women, especially on this board as I've noticed, have a very poor opinion of all men in general. Keep your head up and know that there are men out there who care about more important things than sex. I apologize for my gender to all women who have to go through this. frown.gif <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

Jeremy

[Teri]

Jeremy~I really like the term you used "disrespect". That's what it all boils down to. I have a husband who "WORKS SO HARD FOR A LIVING" and when he walks in the house it like a 4 year old has come to visit, only I can't sit his fanny in the time out bench! I remind him constantly that the diswasher is directly below where he constantly puts dirty glasses etc and I REFUSE to clean his bathroom anymore and he said "SO".....it's a nightmare. He thinks that since I'm home all day he should walk into a hot meal and a clean house. YEP, in your dreams buddy! Hard to reach my kitchen from the couch! He didn't use to be like this. Up until a couple of years ago he was the greatest. Not sure what bug crawled up his fanny but I hope it finds it's way out biggrin.gif

SUSIE the day sex is DEMANDED in this house is the day he moves out. I am sick but I'm not crippled (yet anyways wink.gif and that sob would be gone so fast he wouldn't know what hit him! I sure do hope that you can work this out with him. I know that for years I tried to get mine to read stuff about IC and he just wasn't going for it. So, I started printing up some of the posts and that did help.....tons of hugs~

[Christine36]

Hello Everyone,
This is my first here and I am very happy to have found you all. I have no one to talk to anymore since all of my friends and my husband ignore me now that I am sick. When I do talk to them, God forbid I try to talk about the constant pain I am in or what kind of treatments I am going through, etc, etc. And since it feels like someone is sticking a knitting needle with a pick axe attched to it, up my ureathra, Or when I have to go into the bathtub 10 times a day to urinate. It can be at times hard to talk about anything else. If on the very rare occasion I speak to someone and they do bring it up. They really don't want to hear an honest answer. So I try to act like everything is fine. I think the silence and the fact that the people I care about ignore a disease that has taken every bit of who I once was away, is worse than any trigger words anyone could speak.

I am so glad I found all of you.
Thanks
Christine

[Jeremy]

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Christine,

Welcome. I am only a week into my membership here, but you will find a lot of people who have love for others on this board. I feel a pain deep in my stomach after reading your post. To me, silence is worse than anything. I would rather be arguing than to get the silent treatment.

I'm no expert, by any means, but it sounds like you need to find yourself a support group. You sound like you just really need someone who will listen. I know there are categories for your region on this board. I suggest posting a message there asking about support groups in your area. There has to be someone from New York who comes here regularly that could point you in the right direction to find one. Good luck and keep your head up!

Jeremy

[Jo]

Christine, now you are in a circle of friends that care about you! We may all have different symptoms, ways of dealing with IC and may not always have the perfect words but just always know we care. <img src="graemlins/angel.gif" border="0" alt="[angel]" /> Jo Ellen

[SharonA]

Jeremy

You sound like a really great guy and very "enlightened". I'm also blessed to have a great guy for a husband. He does not expect me to do a darn thing if I am having a bad day. We made an agreement when we were first married. He would earn the money necessary to make the house run and I would do the work in the house to keep it up. When I first came down with this terrible disease and was in such awful pain, he supported me completely and has continued to do so. Yes, I do know just how blessed I am. If I didn't, just reading these posts in this topic has proven it to me.

I was just wondering, Jeremy. Since you are the one in your marriage who has IC, would you concider posting what it is like for you? I was just thinking that maybe if another man writes it all down, then these others who are not involved with the pain of IC might become enlightened and therefore, more supportive of their wives. Knowledge is power.

Just a suggestion...Sharon

[susie]

Jeremy & Terri,
I just wanted to say thanks for answering my post. I always feel so alone with this disease it really does suck.
Jeremy, I liked the idea that Sharon suggested if you have the time, maybe I could get my husband to read it, its worth a try anyway.

Thanks,
Susie

[Jeremy]

Well...let me see. I've posted this somewhere before, so I'll try to be as brief as I can.

I feel I was born with IC. As a child, I had the neverending saga of urinary tract infections, bladder infections and I wet the bed almost every night until I was about 13; give or take. From that point on, my be wetting slowly diminished to almost never by the time I was an adult, but I still had the urinary tract and bladder infection problems, regularly.

As an adult, everything seemed to be fine other than the infections until about 3 1/2 to 4 years ago when I started getting this sudden urge to urinate about 15-20 times a day. It doesn't hurt most of the time (except for after intercourse when it really burns sometimes), but it's very uncomfortable. I have no control over what direction it goes, how hard it flows, and how many streams I have. No matter whether I've just relieved myself or not, I have this constant mild pressure at the base of my penis and lower stomach, like I could go right now, but when I actually "have" to go, the pressure is immense.

My urine has a very dark color most of the time and it has a very stagnant odor. Three years ago, when I had my first cystoscopy, my urologist told me that when I urinate, my bladder does not empty completely and it stales in my bladder. He told me this was the reason for the color, odor and infections.

Over the last year or so, I have started having problems getting and/or keeping an erection. Sometimes "it" just disappears in the middle of intercourse, which is disheartening to my wife and discouraging and embarrassing to me.

I didn't follow up with my urologist for several years after the first several visits. My wife understands it's medical, but is frustrated because I haven't done anything about it until recently. (In reference to my earlier posts...not taking care of myself medically is one of my bad habits that I am trying to change).

Anyway, as you can see, this affects all parts of my life, but my symptoms, compared to what others have to deal with, are very mild. I couldn't imagine constant burning, lower back pains, and all the other problems that some of these folks on this board have to endure every day of their lives. I have the utmost respect for each and every person that wakes up in the morning and lives their lives the best that they can, even though there are times when they would rather be dead. I applaud you all. <img src="graemlins/angel.gif" border="0" alt="[angel]" />

Jeremy

[Jeremy]

By the way...what's up with the time thing. I noticed it is way off of what I have here. confused.gif

Right now it's 1:49 PM Here.

[Christine36]

I am so glad to see that there are other people out there who understand.When my husband is home tells me I am a lier, a drug addict, he says that there are other woman out there who have this and this doesn't bother them all the time,they have periods of time when they feel good.(I have not responded to any treatment) They work, and that I am crazy. When I am really in a lot of pain, or I can't urinate because of retention, or I am up all night going to the bathroom he say's "What kind of drugs are you on now." And then I try to explain and he say's he doesn't want to hear it, and I end up in hysteria. No wonder I never feel good.I have IC,PFD, vulvadynia and widespread endometriosis and still sometimes I wonder if I am crazy. Thanks for letting me vent.

[SharonA]

Thank you, Jeremy for taking the time to post. I did not remember that you had already done just that...Brain cramp rolleyes.gif

There is a reporter here in Memphis who does a "what's up with that" once a week report on one of our local TV stations. I, too wondered about the time thing. My first reaction to it was "what's up with that".

My heart is aching for all of you who posted about your "less than supportive" husbands. I hope that Jeremy's contribution will help.

Sharon

[Teri]

Christine~You really need to find yourself some one to talk to. Maybe a battered womens shelter. I went to one for a while and it only cost me $2 for 45 miutes. Doesn't sound like you husband has mean moments, sounds like he's just mean. My God, what would he be saying if you had cancer?

We deal with so much of our own anger and guilt, we don't need to be dealing with theirs too and at a womens shelter you should beable to talke to someone on the ourside who can help you to get your self-esteen uo out of the dirt.

Please know that I have added you to my prayer list and will be sending healing thoughts~

[Teri]

Jeremy~you saved my husbands life today (not sure if that was a good thing or not yet) but instead of taking his head off I was calm and able to say "we should really learn to respect each other a little more before we open our mouths smile.gif

Thanks <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[lainie]

Hi Jeremy, it's nice to see that you have a caring wife..my hubby is pretty good 90% of the time but whenever we get into the odd big arguement, well, it's like I'm talking to Satan himself!
I thought women were nasty--boy was I ever wrong! The thing is, whenever we do make up, he says that he never means anything that he says about my IC, just that he knows it would upset me..I try to keep that in mind but when the next fight comes up and he says that stuff, you really think that he feels that way! Then again, maybe it is just my own guilt about having this disease! Who knows!
I hope that you are getting some relief from your symptoms..sounds like you've had it bad for so long! It is good that you are taking charge and that you have the support of your wife! I don't get much pain myself-only once in awhile--but I mainly have urgency and frequency..
Again, thanks for letting us know that there are good guys out there! And remember that we are all here for you whenever you need to talk! Lainie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Christine36]

Teri and Jeremy Thanks for taking the time to answer me. Its nice to have someone who will listen

[Jeremy]

When my wife and I are arguing and she says something to me that hurts, I've leared to become very quiet and walk away from the argument. When our nerves have calmed, I let her know how I felt about what she's said. I used to lash back immediately and say things to hurt her that I didn't really mean.

It's funny how much I want to hurt someone back when they hurt me. I don't understand that feeling, but I can't deny that it's there because it is, and it's very hard to hold it back.

I have friends who call me a whimp because I do this, but they don't have the relationship with their spouses that I do, so it really doesn't bother me.

Jeremy

[Jen_Cole]

Well, here's a thought, and this is what I plan on doing. I am going to get a picture of my bladder from my uro so that whenever anyone has the balls to say anything like what you all have mentioned above, I will whip it out, along with a pic of a normal, healthy, uninfested with ec or ic bladder and then ask, "Well, which one would YOU like to have???"

Trigger words..let's see..Well, I already mentioned the "you just forgot how to pee" phrase, and hubby has been pretty understanding. The only thing I don't like is when he teases me about ot wanting sex-which is better than being downright nasty about it!

[Christine36]

Well here we go again,my husband just came home from work and I asked for some money for a topamax prescrition. Which he replied that he had none. Then the whole "I don't belive your in pain all the time" and "you are just doing this to get pain killers",argument started again.

Then I start pleading with him to belive me,explaining all the things that I have said to him over and over again. I do have extensive endometriosis confirmed by pelvic lap, On top of IC confirmed by cysto, Vulvadynia and PFD but I don't know why I feel like I have to justify my disease's to him. He say's things like "I don't know why you just don't get a hysterectomy, if your in so much pain" or "I read about this and no one else with this disease has pain 24 hours a day"Bla Bla Bla

He just hurts me so much all the time,Why would anyone go to 3 Urologist's one that is 3hrs away and endure these awful tests, 4 Obgyn's a gastroenterologist, and two diffrent sessions of bio-feedback, plus a psychiatrist on a regular basis just to get pain medication, the only doctor that prescribes that is my MD anyway.

I don't know why I feel like I have to justify my behavior all the time, I guess I just am trying to say somthing to him that will make him say "Oh honey I know this is terrible for you is there and could you use a Hug"HA!!! That is ridiculious. It is never going to happen.

I know my marriage is over, and It has been for a long, long time. It is because of these disease's and the way that I have changed. I just wish that all of this wasn't so hard for me to accept.

Sorry I am rambling on.
Thanks all of you for being out there.
I feel a little bit better just getting this off my chest.

[lainie]

Christine, I cannot believe what you have to put up! You have all of my sympathies and understanding!! Be strong! Lainie <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[lainie]

SO SORRY BUT I MEANT TO SAY "PUT UP WITH" DUH!! WAS JUST SO BLOWN AWAY WITH YOUR POST! GOOD LUCK, LAINIE

[ICNDonna]

Christine, it is not your fault you are ill. And your husband's attitude is not your fault. When you were married it was for better or for worse, in sickness and in health. You are experiencing the sickness --- you are still the same person. I agree with others that a marriage counselor could be a great help to you. And if your husband won't go, go alone.

You shouldn't have to beg for medications any more than he should have to beg for dinner!

Sending an encouraging hug,
Donna

[Teri]

Christine~I pray that God gives you the strength you need to get you thru what you have infront of you.....When my husband acts like yours is acting I often wonder WHAT happened in his life to put so much hate in his heart. I use to feel sad for him but not any more. He is a 53 year old man who makes a good living and if he wanted to change, he could, even if it took some outside help, he could afford to get the help. If he wants to stay as hateful as he is, that's his business AND his right.

With every hateful word that comes out of his mouth he pushs me farther and farther away and now I'm to the point where I don't care if it ever gets fixed. I've learned to fill myself up with things other than this marriage and I KNOW that strength has come from above.

sending tons of prayers and very gentle hugs~

[Christine36]

To all who answered me a million thanks, it is just soooo helpful to have people out there with understanding of this crummy illness and compassion. I send all my love.

God Bless.

<img src="graemlins/hi.gif" border="0" alt="[hi]" />

[Carla Lyn]

What sends me off the deep end is when my husband says...."what do you mean you don't have time, that's all you've got is time!" One of these days we'll see if looks really can kill!!!
mad.gif mad.gif mad.gif mad.gif mad.gif Lyn

[Christa]

Kelli-
I wish I had had that response ready last week. No more than 4 people at the hospital gave me that "it isn't fatal" line. I explained that at least with death there's always a chance to live, to win. But with pain, you never win. Pain always wins. Anyhow, all the stupid remarks I've heard have come from drs and co-workers. Thank God my husband is the absolute best. I love him a lot. And he knows it.
Christa

[Oceana]

I like this topic becoz I have a story to share. I was in the ER one day ,I was in the ER that week for almost 8x & I overheard my former PCP telling my boyfriend then that my disease is psychosomatic. That was the day I lost contact with that Dr.I screamed at both of them to get the **** out of the room.
Other words that triggers me are also those that has a venom of a guilt trips esp. the tone that God will not give you something you cannot handle.Or pray more.
I think there are words that can almost drove me to homicide sometimes.

[Teri]

Oceana~I just LOVE that one! "Pray more"......always makes me feel like I must be praying wrong or something mad.gif

[calmkiwi21]

The one saying that makes me the most angry is when everyone tells me "oh It's all in your head" So many times I have felt like screaming when told that by family members, teachers and others grrr.

[Kelli]

thats gotta be the most famous IC line in history, It's all in your head. To that I say, if it's all in my head,then I should be able to get rid of it right???? I could only WISH it was all in my head so I could forget about it and it would go away.

To Jeremy,
Bless you honey for being such a GREAT guy. Your wife is very lucky to have someone as compassionate as you are. I too have a great husband who is very understanding and compassionate. He says the wrong things sometimes but I think he's just so frustrated that I have to deal with this miserable illness. Also, he's Mr.Fix-it, and this is something he can't fix and I know that bothers him to. There is nothing he can't do, except for help me. That has to be hard for him.

To Christine,
You do not have to put up with that from anyone, not even your husband. Maybe you could check into some counseling. Maybe take him to an appointment with you so he can hear what the Dr has to say. Tell him his negativity is destroying your marriage and you dont know what else to do about it anymore. If he truly loves you, he will be willing to go into some family counseling to get through this. I wish you the best of luck. You can always come here to vent if you need to, There are aprx 4,000 ears that are willing to listen.

[Missie]

GOOD POST!!
Goodness, our partners be so insensitive at times... heres my list.
10-"its your job to take care of the baby, I work"
9-"You havent done anything today"
8-"I dont know what to tell you"
7-"Arent you over this yet"
6-"so, I hurt too"
5-"We never have sex"
4-"but I want to....." fill in the blank with what he wants
3-"what do u want me to do about it"
2-"cant you be normal"
1- And the worst thing he can say to me and says occasionally is "whaaaa" meaning i'm a cry baby.

He has gotten much better since he went to that doctors appointment and i had the doctor explain everything to me. He said most of this stuff before i was even diagnosed!

[Missie]

Oh and doctors too! My uro is normally sensitive but I call him and i am in pain, he tells me "go to the emergency room, I cant help you."
ISnt that what he is for? uggghhhh