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  • flowerangela
    replied
    thanks amy that makes me feel optimistic. now if i could ever get out of the house besides the drs office?maybe i will meet a guy online.i dunno.

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  • amy09
    replied
    Try to stay positive. I'm actually a couple years younger than you and I most likely have IC. I felt the same way you do. I finally met the love of my life over a year ago whom I plan to marry and after finding this out, I got incredibly depressed. We had a wonderful first year together and all of a sudden all I could think about was how much I'd affect our sex life and if he'd be upset if I couldn't work full time in the future etc etc. But after having a lot of heart to heart talks he's assured me that he is not going to leave me because of a bladder condition and he won't leave me if our sex life is affected. He loves me too much to even consider something like that. So if you find the right guy, he will stick by you through this. And the worst thing you can do is let the negative thoughts consume you. Try to remember that you still have your life and even if it's a little different now, you still have it.

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  • flowerangela
    replied
    also this pyridium feels like its starting to irritate my bladder..been on it for almost a month now.

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  • flowerangela
    replied
    re elmiron

    i do not know. i do have pain and flu like symptoms a day after the treatment though maybe instills arent for me. i dont know. this sucks.,

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  • bjwright
    replied
    I'd ask why the delay in Elmiron

    Dang... sometimes doctors really perplex me. Why not give you Elmiron to start with? It takes months to work -- I saw some improvement at 2 months and maxium maybe at 8 months-- too long ago... can't remember exactly. I definitely would ask the doctor why DMSO first & then Elmiron. He/she might have a very good reason. I am curious; I don't get what it would be. But I'm not a doctor. I do have 19 years experience as a former R.N.

    DMSO has a side effect of "malaise." That is a medical term meaning you feel sort of flu like symptoms. I had a 15 min. drive home from the doctor's office and would immediately take a nap and was a little sleepy driving home-- always. Eventually, I was Rx'd DMSO so I could do the instills myself at home. I prefer that and taking care of instills myself--anything to take back some control from the beast. Right?

    Good luck flowerangela. J

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  • flowerangela
    replied
    contiuation

    then i will be given elmiron to take home monday

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  • flowerangela
    replied
    thanks ladies for all your advice and support. i had my first rimso/dsmo 50 mixture for the bladder instillation today.at first, it was cold and hurt like heck. i was so scared what it was going to feel like hours later at home afterwards because she made me sit there for 15 mins and i felt like i had to go pee so bad and she wouldnt let me go until after the 15 min was up.When i got home i immediately took my percoset and took a hot bath I was in SO much pain.i eventually got drowsy and took a nap and woke up to no pain. i havent peed yet though so we'll see.she said i go every 2 weeks and will receive 6 treatments total.the official diagnosis of IC was made today.

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  • ABliske
    replied
    Good luck with your treatment! I started dealing with this when I was around 19 I'd say. I didn't get really bad off all the time until age 24 about 6 months after being married. So, I didn't have to deal with the dating issues. I'm sure someone out there will be understanding though. There are so many guys out there - even guys with this condition. And on the bright side, when you find someone, he'll know what he's getting himself into.
    Sometimes, I feel like everyone is so unsympathetic. When we've had fights, my husband has called me "broken" and worse. I hate that! We have had some rocky times but now are doing well. I've found that marriage is really a lot about learning what not to do or say to hurt the other person.
    I know with Valentine's Day right around the corner, it must be rough. I think we all need to have a positive attitude and try to work on treatments and being strong when our bodies may be weak. I think if you can be accepting of this condition and learn ways to cope, it will help others to be accepting of it as well!
    It shouldn't define who you are. I'm sure you have many other qualities that will attract the right person for you.

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  • flowerangela
    replied
    thank you everyone for the kind words. my appt is at 12:30 today and i cant remember the name of the bladder treatment (long name and they said it fast)... im hoping it will make me feel better and not worse because im still hurting from the cysto procedure and feel like i am reinfected with bacteria again down there so im going to ask to pee in a cup unlike alot of people on the forums,i dont have a frequency issue. i have a its hard to go at all issue. i hardly ever go no matter how much water i drink and i have to strain to go. i know its not a kidney stone cuz all the tests they did in the hospital came out clear.im thinking it might have something to do with my ibs, like my gut is leaking bacteria into my bladder or something?is there a wall between them?i know how one lady felt earlier that had said "ive had plenty of utis and this is NOT a uti".. im pretty sure my diagnosis is correct. we will see.

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  • bob04951
    replied
    Hy Ang, what type of "bladder treatment" are you having? We will all be interested to know how you make out and everyone is here to give you support.

    Please don't feel depressed about this, there are many treatments and many remissions. Give your BF some written info he can digest on his own time. Sometimes the guys just think the girls are drama queens and are exaggerating. Give him something to read about IC and ALL of its related complications.

    You know there are so many couples on here who work through this together. The sex part is difficult especially beng young, but you will see young ladies on here having babies and living a relatively normal life. It is something you can live with when you get a treatment plan that suits you and keeps you comfortable. And any guy worth his salt will understand. Let me tell you as a woman with a hub with IC, it's tough, but as time goes by he complains less, I just know by looking at him how he feels. He's a bad boy sometimes, and gets angry because I "mother" him, but appreciates it. Your guy really needs to understand the disease/condition and be able to deal with it WITH YOU. The most important thing is to not exclude him. If he can handle it, you got yourself a good man.

    Taking care of yourself is your #1 priority. Everything else will fall into place if it is meant to, you do not need to be stressed out right now. Let everyone know how you do on Friday, good luck to you. Jill, wife of Bob

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  • ICNDonna
    replied
    Most people with IC do get better with treatment and diet --- and most of us live normal lives in spite of having IC.

    We will celebrate our 39th wedding anniversary in April and I've had diagnosed IC for 36 of those years. I think we are actually closer than we would have been if we'd both enjoyed good health for all of those years.

    Donna

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  • VickiB
    replied
    I would say your questions seem to assume that how it is for you right now is how it will always be. While IC doesn't usually go away, most of us do get better with treatment and time. I myself went from the pain being so bad that I was contemplating suicide to today where IC rarely affects anything I wish to do.

    My hubby stuck at my side through the better & the worse. -There are good guys out there! So even if you don't improve that doesn't mean there is not a man out there who will love you for who you are, IC & all. He probably won't be easy to find, but good things rarely are easy to find!

    I would concentrate on getting your IC symptoms better for now. If your potential boyfriend weirded-out, cut him a break giving him time to sort this out. Maybe he can deal with it, maybe not. If he's one of the good ones he'll be back once he comes to terms with his own feelings. If he doesn't come back, (I hate to say this!) it's probably for the better.

    Hang in there,...most of us DO get better!
    Vicki

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  • mary124
    replied
    Who knows how old I was when I first started showing symtoms. The doctors thought it was a bladder infection (but I kept getting them and getting worse; at this time I was around 18. By the time I had my second child at age 28) the doctors started to take me more seriously deciding that I had something really wrong, but of course after having more tests and procedures they still couldn't till my Uro consulted with another Uro who specialized in Uro problems including IC said that I might have this but "the only way to dx her is to do a hydro" so I did, he said that I couldn't possibly have IC because I was too young (32-this was in 1992) he said his IC patients were in their 50-60's. Now of course, I see/hear about young girls and even guys who have this stuff at a young age.
    Anyway, I think I got off track here, but I met my husband at the time that I was really sick and he stuck with me thru thick and thin. Besides IC I also have a heart condition that when I was 43 had OHS for a valve replacement and an anrysum (?) stilled wrong I know) but he is a dear (most times) he understands me, even goes to some of my doctors appointments with me.
    When I get down on myself I will say something like just go and divorce me as you didn't plan on this. His response was that I am taking what I said to you which was sickness and health. Now, I am sticking with him as he was dx with diabetes, HBP and a few other things. I think we understand each other very well.
    It does get better, follow the diet. I am not as diet sensitive as a lot of IC'ers but that doesn't mean that I can eat what I want all the time. I can have my cup of coffee in the morning. and other things I just eat in moderation. Take my medications and just take care of myself when I can. I work full time so it is hard to do.
    Sorry this is so long.

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  • bjcov
    replied
    I was 24 and engaged when I first got symptoms. Wasn't diagnosed for 5 years. The best thing that helped me is following the diet. The worst culprit? Coke......I gave it up 3 yrs ago and I still miss it. I also stay away from "fake" sugar, coffee, ibuprofen,caffiene. Most people do get better and the more knowledge you have, the better you will feel. Its super scary but the more you know, the more confident you will feel. I would spend hours and hours on this site and I can honestly say that I've learned more on here than at any doctors appt. Keep you chin up!!!!!

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  • bjwright
    replied
    It will get better

    flowerangela,
    I wasn't as young as you are when I was diagnosed, but there were LESS treatments available. I understand what you're going through. I was newly separated from an abusive marriage and felt like "damaged goods X2." I had a very rocky start and had gone 6 years w/intermittent symptoms. Many people don't wait that long for a diagnosis now as more Dr.s are aware of IC.
    As you improve-- and you will-- you won't define yourself AS IC only. Also, I would say ask your doctor to evaluate you for Pelvic Floor Dysfunction. It can cause pain during sex. PFD is the last piece of my own IC + other diagnoses puzzle. I'm waiting to meet my deductible so that I'll be able to use all my PT visits allowed per year.

    B/c there were so few treatments and I was classified as severe, it took over 2 years to feel better. I did work for 8 more years and in ER/OR as an RN. I don't know how, but I did. I finally had to go on disability as well; over 11 years ago. I've made another life for myself. I also have multiple diagnoses; not everyone does. Remember, this was many many years ago. I was in the clinical trials for Elmiron or I wouldn't have been able to get that and there was just DMSO-- no Heparin or Elmiron instills or any of the other things like Lidocaine, Bicarb, etc.

    I have been OFF Elmiron since September 2010-- it was an experiement b/c of the cost. I've been fine-- this is NOT something I'm advising anyone else to do. I'm going to pick up an Rx for it tonight now that my "professional friends" have seen to it that the co-pay was lowered. I want to have Elmiron on hand in case something happens. Now, most of my problem seems to be PFD.

    It will get better. You are going through a normal grieving process trying to work through the impact of hearing, "You have IC and it's incurable but we have treatments..." is undeniably difficult to comprehend. Stay close to your friends and family. Concentrate on listening to your body. Cry when you need to. Go outside your house at least once a day, if only to go get the mail, etc. At one point, that was my doctor's advice right after I had to leave nursing.

    Flash forward to now. I have a boyfriend I've been with for 5 years, we've lived together for 4, he is several years younger and pursued me. He was waiting for me to break up w/the guy I was engaged to. I met B through a mutual friend, we hit it off musically and personally immediately. He knew the break up was inevitable b/c I was asking both my "bros" what was up w/this guy; I needed a guy's point of view. B was too much of a gentleman and too smart to reveal his feelings b4 the break up with the other guy. I'm looking forward to performing w/him on Valentine's Day. It's a gig we do each year. It's great... cozy restaurant w/amazing food and they treat us wonderfully.

    I've copyrighted 13 songs which I've written/arranged/produced and recorded. I've written several more and can play piano 4 hours w/o a break and no ill effects. B plays bass w/me on the songs and engineers our recordings. The really good men will love you for who you are and help you when you're having a bad day. There are good men out there that have the patience and smarts to see a wonderful person and not just a patient w/IC.


    I eat and drink, within reason, most anything I want to. I drink coffee daily- I'm fine. I had my first glass of champagen in probably 10 years for New Year's 2011. Some people cannot handle that and I didn't try that for many years. I WILL NEVER EVER CONSUME ANYTHING W/ARTIFICIAL SWEETENERS! One of my doctors believes they cause brain cancer-- that's not the only source I've heard or read on the subject. Aspartame will through me into an unbelievable flare.

    Time is a healer; both for mind and body. You've heard a shocking revealation and it sounds like treatment hasn't kicked in yet. The hard part for us and our doctors is that we all respond differently to treatment. You will find your way through this and be amazingly strong-- more than you ever thought you could be.

    I have faith in you. People w/this diagnosis become more compassionate and maybe a little tougher. Sure, I would love to wave a magic wand so that there was a cure, a baby could be tested and treated in utero, etc. But, bottom line, I won't let it completely run my life.


    I know you will find your own way through this difficult maze.


    Con Mucho Abrasos,

    J
    Last edited by bjwright; 02-08-2011, 05:01 PM. Reason: repeated info

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