View Full Version : what will the future hold?
Nicole in ATL
11-14-2003, 05:42 AM
I've been dating the same man for about 2 years now. I was diagnosed with IC about 6 months into the relationship, but started having problems after about 2 months in...
Here is my rant...and fears...
I feel like damaged goods sometimes. Most people wouldn't want to marry someone with a chronic illness. I feel guilty about being sick.
I worry about never being able to have children. Sometimes, I feel jealous of the people on these boards who developed IC much later in life and already have husbands and children and even grandchildren. What if I can never have that?
IC holds me back in so many damn ways sometimes. Career wise, money wise. I work full time and I have to keep my job for money and insurance. It's just so hard sometimes to work.
I know it does no good to worry about the future or dwell on things I don't have. I know it could be worse. But today I am having a hard time coping with the reality of IC.
My marriage and baby clocks are ticking loudly...
Thanks for listening,
kissing kissing kissing Thinking of you. I am a worrier so I can relate to you on that, for sure.
I really think I was one of the lucky ones by NOT being dx'd with IC......
I thought everyone felt like I did. I had my kids, believed that everyone suffered pain all the time and did what I had to do. I didn't know any other way. Then, when I walked out of the marriage with a 3 and 4 year old, I had to work PERIOD!!!!!!!!!!! Tried state aid for a year and that just didn't get it. Then, I self-medicated with booze for 7 years (that was a riot wink you can imagine how much time I spent in the bathroom then!)
It wasn't until my kids were grown and gone and I remarried that the pain of the IC became a severe issue (after a bladder suspension). I'd been sober for 8 years and kept saying "I got sober for this!!!!! "
You CAN become a mother and you CAN move forward. For me there was no option and I'm so grateful that it worked out the way it did...I'd been in pain since I was a child and I didn't know any different and I really believe that it made me a better and much stronger person......
Am I damaged goods? I don't think so. I've just got a bunch of broken body parts.....You can not live your life afraid of tomorrow~
sending tons and tons of hugs~
11-14-2003, 07:12 AM
Try not to focus on the horror stories. Most people live completely normal lives. It can get scary when you hear how bad other people are. You should read about all the positive stories people have to tell! Good luck to you!
11-14-2003, 08:57 AM
Nicole, I feel your pain.
I came out of a serious relationship very heartbroken at the age of 21, only to learn I have IC. EVERY SINGLE QUESTION you asked sped through my mind--- can i have babies? i want to be a mother!! IM SO YOUNG!! will I EVER meet anyone? who the YOU KNOW WHAT would want me!! Will I ever eat normal again?? I love tomato sauce....Will I ever work normal again?? nurses dont get to pee much.....can i have babies? I want to be a mother so badly!!! And on, and on, and on, and on....
Im not going to tell you I dont think of those things sometimes. What hurts me the most is that since that relationship, litterally MONTHS (2?)before my diagnosis, I have not met anyone else. Its been almost four years (it will be 4 years in april...not that Im counting.) Granted, I have been VERY busy with other things in my life. But i believe that there is a small voice in my head that wonders if its because of the IC.....now mind you, I havent told any guy who's gone running, so I cant blame it on IC, I just havent met anyone....but the coincidence of the timing eats at my confidence more....
Im not telling you all of this to complain to you or steal your thread. But I am telling you to help you understand that it is SOOO COMMON. A therapist I saw here in Philly when I was at school (at a large university) mentioned that it was like trying to present your "defective" self to society, which can be paticularly daunting for young women. But, when she said it, it made me realize something....she sees HUNDREDS of women a year who all think the same thing. And not all of them have IC. Some have diabetes, manic depression, eating disorders, chronic pain of all types, cancer, you name it. Although those are all easier to say than "interstitial cystitis" it doesnt make the reality of what those women are living with any less difficult-- or any different-- than ours.
Betsie said things very well. Enjoy your man. Read my post under the singles board--- we have a hard time understanding our own bodies, imagine someone who doesnt have IC trying to understand. He probably finds it just as challenging as you do. BUt he's still there. Dont focus on what you dont have (in the words of Sheryl Crow....Its not having what you want, its wanting what you've got!!) focus on what you do. A man who loves you. Perhaps some day children. The human strenght to reproduce is extrodinary--- otherwise we wouldnt have such a crowded planet!!
Last but not least, it is VERY important to remember one simple thing. YOU ARE NOT IC. You are Nicole!! A girl who happens to HAVE IC. There is a huge difference. Dont let it have you, you have it. And when you have a really sucky day, we are all here to suck it up with you!!! But when days are good-- weather its meds or eating well or finding an alternative treatment that makes you feel better---- LIVE Nicole's life, NOT IC's life. You are not defined by what you have-- no one is (even those who buy every brand name purse to try and be defined by what they have wink which there is nothing wrong with that either!) BUT You are still YOU. So when the going gets tough, try to remember that, and try not to define yourself as IC.
I may have ranted a little bit....It just zucks when one of my IC buddies is down, CAUSE I KNOW HOW IT FEELS!! I hope this helps a bit. It may be cliche but...yesterday is history, tommorow is a mystery, today is a gift thats why its called the PRESENT!!
Have an excellent weekend!!
BIG BIG HUGS,
kissing Rachel grouphug
11-14-2003, 09:01 AM
PS -- i wanted to add.
My marriage and baby clocks are ticking too.
JUST BLAME IT ON HORMONES!!
(or society...I could go on and on..)
Big hugs, Rachel
11-14-2003, 10:01 AM
Everone has great advice posted for you.
I hope you listen to them. You are not damaged at all. Just your bladder. So if someone can see how bad it looks, then worry. Since they can't we'll enjoy life as "each" day comes. I got married almost three years ago. He loved me bad bladder and all. After our son was born last year, I have such a *itchy side to me certain days of the month. eek (You know what I'm referring to.) And if he can handle those days, I'd say he doesn't think about the other.
You have us to hold on to. So don't give up. It'll happen!!!!!
Hugs to you!
11-15-2003, 01:07 AM
I got IC at the age of 14 and have gone on to have a husband, a family (pregnant with #2), a career, and an active life in the community...1st of all I would like to say you have only had IC for a year and a half. A year and a half after I got IC, I was still in a lot of pain. Now after 18 years I am almost never in pain - You get into your own pattern of pain management habits and they become second nature, this takes time. This 1st year and a half does NOT determine what your best level of functioning will be for the rest of your life.
2nd, it is "just" pain...As Teri pointed out, you CAN do everything as if you were not in pain, it is just very hard mentally - to me as a teen I felt I had no choice, either keep doing all the things your average teen does (school, job, boyfriends, parties, concerts, etc), or decide that my life was over before it began. So I did eveything and it hurt a lot. I am so glad I did! I do not truly remember the pain now but I remember all the great experiences I had while in pain, still have treasured friendships from that time including my husband who I met my Jr. year of high school.
What you are saying is "I am young, I still want a life". It is your choice - you can have one, you will just have to be tough mentally. I think the reason I could do this is because from the time I was little, if I told my Dad, "That is not fair", he would say, "life is not fair", and that is how our household was run. So it was easy for me to accept that if I was going to get what others had, I might have to work 10 times as hard and suffer 20 times as much. It is so easy when you are in pain and someone offers sympathy, to collapse and cry on their shoulder and become 'helpless'. I learned instead to give a big grin and say, "Thanks, I love pity". To myself, when I looked in the mirror in the mornning and part of me said, "I want to have a sick day today", I would say out loud, "Get out there, there are people in this world in more pain than you". I hope you are stubborn enough not to let this ruin your life. All those anxious thoughts you are having...I hope you look in the mirror and talk back to yourself. We all have a negative, worrying side but it is important to talk back to it so loudly that it can't get the upper hand in your mind...I wish you the best of luck in becoming more comfortable, and I have faith that you will hold up well in the meantime! --k
Hi, I really agree with Betsie, and Karen said it very well, in her post. I was just diagnosed a year and a half ago, so still fairly new with IC myself. I had a big pity party for myself at first, and was letting the pain, and IC really drag me down, and away from my usual lifestyle, and then the light went on, and an old saying my mum used to say, when I was fearful of something when I was a small child, and even as I grew, it was "stay strong and fight it, like a lion, and not a lamb". God bless my mum, (who died eleven years ago) it really made me coming out fighting mad, and determined not to let IC rule my life, even on days that are not so good with pain. I checked on the internet and found the IC network and the wonderful IC family, which was wonderful and supportive, and knew what I was fighting. I do not give up, or give in to IC, and with the help of the right meds, and my best friend, the heating pad, and electric blanket, I am able to win the battle, and ease the pain from IC. I am determined not to give up leading a good life with my great husband, and two grown children, and my granddaughter. Hang in there, and do not let IC win, it will if you let it. You can always come here for strength, support, love, and compassionate fellow ICers who know what it feels like living with the daily ups and downs of IC, and many other things that some of them deal with everyday , take care and love and hugs, always here for you, you can always PM me, glad to answer you anytime, another hug to hang in there Iris hi kissing grouphug hat
11-15-2003, 02:53 PM
I just wanted to say that every Reply in this thread has brought a smile to my face. It has reminded me that I am not alone, that there are other people who understand. Although my parents and friends are good support systems, its hard to understand IC if you arent an ICer. I am very thankful for every single one of you.
I think Karen mentioned two important points-- one is that at three and a half (almost 4) years after my IC diagnosis, I DO NOT feel the way I did two years ago.....last year.....things change quickly. Take care of yourself, and keep looking for what works for your body. Listen to it-- but also talk to it, teach it, and live your life-- like karen said-- exactly how you want to.
The other point I want to mention is what Karen and Betsie touched upon....love yourself. Do not be at war with your IC--- because that anxiety feeds the IC pain monster. Its proven. Your IC is a part of you, but like I said its NOT you.
I found a magnet today and I wanted to share the quote....(yes, i had to buy the magnet when i read it LOL scream )
it does not mean a place where there is no noise, no trouble, no pain, or hard work. it means to be in the midst of those things and still BE CALM IN YOUR HEART.
I found that appropriate. I wanted to share it with all of you.
I want to thank you all SO MUCH for bringing a smile to my face. Big hugs to all of my IC friends. kissing
With Love, Rachel
it does not mean a place where there is no noise, no trouble, no pain, or hard work. it means to be in the midst of those things and still BE CALM IN YOUR HEART.
How absoluately perfect~
11-16-2003, 03:05 AM
grouphug I think we have all worried about things like this at one time or another. Remember you come first and take care of yourself.
Rachel what a perfect quote, and one to be copied and remembered. I am certainly going to write that down, and keep it next to my computer. I agree whole heartedly with Betsie's remark, that she might not like IC but thankful that it brought her to this network, and I agree 100%, I thought I would not be able to go on with the pain, and the way I felt after being diagnosed, and then like the saying "when God closes one door, he opens a window", and my window opened, and there you all were, the IC network and the people in it, who for me, were a life saver. I now, do have peace and contentment, even though I live with IC daily, the road is not so hard, thank you all for being my IC sisters and brothers,and travelling the road with me hugs Iris hi kissing grouphug :)
11-16-2003, 04:59 PM
I've been fighting IC since I was 21 ; I turned 33 in October . I got married right in the middle of my first major episode which lasted years. I went into a mild (stress on mild) remission and was able to support myself for several years. Thinking back on it, in our first year of marriage, my ex and I must have had intercourse more than 1000 times. I've always wondered if that contributed to my IC? The Docs say no. But they're the same bunch that took eight friggin' years to dx me!
Then, bammo,it came back with a vengence just after I had married my second wife. We now have a soon-to-be four year old daughter.
Things aren't easy. Running our lives day to day is very difficult even tho' I've been on disability for about five months.
Flare ups, plus being whacked on painkillers often mean that I can't take my daughter to preschool classes, I can't run errands for my overworked, underpaid wife. She can't count on my being able to help her with things outside the house. Naturally, this creates lots of stress. She is the most understanding and forgiving person in the world, but even a saint would have to grow frustrated being married to an IC patient. The amount of money we spend on drug co-pays could pay off the foreign debt of most of the Third World. The total prescription bill just for me was over $12,000 last year. Thank God for insurance!
You CAN be married with IC. I know, as a man, that the disease is different. Pregnancy, I've heard, can be a real nightmare because you can't take painkillers. And I take enough in one day to get most of the junkies on the planet high for months.
It's all about finding an understanding partner. The, ah, sexually unpleasant aspects of IC are embarassing. Believe me, I know. Fortunately, I have found not one, but TWO women who had that understanding and compassion.
There are men out there who are like my wife. A guy who runs at the mere hint of trouble isn't exactly stellar husband/father material, is he? No.
I appreciate that you can still work. I can't. Had to, as I said, go out on SocSec disability. Was turned down once, but I found a great uro--young, open minded and ready to listen--who helped me secure it. I got $25K in back bennies and we were able to buy a house.
The irony is, without all of my suffering, without all those years of pain, we would NOT have this gorgeous townhouse.
"The ways of the Lord are often dark, but never pleasant."
Nicole in ATL
11-16-2003, 11:37 PM
Hi Ladies and Gentlemen,
I've been away from the computer over the weekend and when I logged on today, I was surprised and happy to read so many replies...I am going to print them all out.
Thank you so much to everyone who took the time to write such thoughtful, insightful words. I really appreciate it.
It's a hectic Monday here at work, so I will be back later. There's more I'd like to say.
But I just wanted to drop a quick note of thanks.
11-17-2003, 01:22 AM
ok here's my 2 cents worth.
I think that if your boyfriend has stayed with you in your relationship for a year and a half after your diagnosis, he plans to stay with you. I think if he was going to walk out, he would have done it long ago. I didn't have your fears, well not all of them anyways. I had two children before I found out that I had IC. I had been in my marriage for two years. That is what terrified me. I was unable to have sex for months at a time and I was scared to death he would leave me for someone else. But he didn't. He stuck by me and tried so hard to understand and cope with this illness just like I did. We learned alot together. It wasn't until just a few months back that we split up. I blamed IC at first. I didn't think he could take it anymore. But I know now that wasn't it. If he was going to leave because of the IC, or any other of the 5 illness's I have, he would have done it years ago.
I think your boyfriend is a very wonderful man to have gone through the last year and a half with you. Most men wouldn't have. Note I said MOST. Maybe he's not ready for marriage yet, or maybe he thinks you aren't ready. Have you talked about it? I also believe you can have children with IC. There are people on this site who have done it and who are doing it right now. Sure, there are risks involved, but there are risks in every pregnancy even with the healthiest of women. You just have to keep your chin up, stop focusing on the bad things and strive for the good. Patience is the key word. Good things come to those who are patient.
Nicole in ATL
11-17-2003, 05:46 AM
Thank you, my friends!
I didn't mention this, but I think it is relevant to my post. Before this last relationship, I was with another man for 6 years. Lived with him for 2 years. While I have only been diagnosed with IC about 1 year and 8 months, I've had problems for years before that. I do have a history of chronic UTIs, but also other times when I just didn't feel right. Now I know that is IC.
I can definitely relate to Teri when she stated that she thought everyone's bladder felt bad sometimes. That's what I thought too.
But my old boyfriend used it against me a lot. He would get angry, thought that I used symptoms to avoid things like having sex or going out if I didn't feel like it. It was very frusterating for me and I had no diagnosis of IC or anything that I could be validated with.
Anyway, I eventually left him b/c the relationship was awful and he treated me very badly.
I am so thankful to have a boyfriend who is so kind and understanding when I am not feeling well. I am grateful to not have to justify my symptoms or fight about if they are real or all in my head. I know what is it like to have someone not believe you or hold it against you when you feel sick.
I know I need to live in the moment. I'm happy to hear that others here have happy marriages and were able to have children. That definitely makes me feel better.
Thanks again to all who posted and for your support. I don't know what I would do without you all!
Nicole kissing grouphug
I know you've got a lot of posts already, but I had to add one. I've been there, and am still there, just like you. I'm 26 and was diagnosed two days after my 24th birthday. I had just ended a relationship with a very selfish man, and felt like I'd never be loved again. I went a little crazy and drank more alchol, and did other stuff I'm not proud of to cope. Then, I began dating my current boyfriend, whom I've know for nine years. I found out he had cared for me before the IC and still did afer I was diagnosed. He's seen me at my worst and still thinks I'm beautiful and loveable. Basically, he doesn't see the IC, and slowly I'm learning not to be the IC. I think we'd all be lying if we said we never felt like lesser beings, but you get through it, because living life no matter what is more important than dwelling on what we cannot be anymore.
I like a story I heard at a Weight Watchers meeting (one of the ways I got on with my life.) There was a man who had become, in seperate accidents, parapalegic. He said when he had all of his limbs he could do 10,000 things, now he can do 8,000 things. He said he'd rather concentrate on those 8,000 things instead of the 2,000 he couldn't do anymore. It's very difficult, but I try to remember this when I'm feeling down. Hope this helps some.
Nicole in ATL
12-03-2003, 06:56 AM
Sounds like we had similar situations with boyfriends Erica! It is hard to be dating someone and then develop IC. But I am glad that my boyfriend has been there and seen me through the whole process...he has seen me at my best and worst and has helped me through bad times. We are engaged now and I am so excited and happy!
Thanks for sharing your story about the man who became paralyzed. When I was in school, I read about many disabilities and met with people with everything from brain injury to spinal cord injury to amputations. This had a great impact on me and helped me to not only have empathy for people with disabilities, but to look past whatever was wrong and see the person. I have trouble doing this with myself sometimes.
Someone on here wrote that IC is a journey and it is that. Life is a journey as well. I guess the challenge is to make the most out of it.
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