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  • Reba in Arkansas
    replied
    I'm so sorry you are having such a bad time. It really makes me mad when I hear that family doesn't understand. Try to be gracious even when under fire. My husband didn't understand for years, nobody did, until they saw the pix from my cysto. It looked like chopped meat. Something Freddie would look like on a good day. Gross. Now they seem more tolerant. I do appreciate how upsetting it can make even the hardest of men. They usually don't show it and since it is something most of them don't understand and if they can't control it or fix it, they deny it. Be patient. I'll say a prayer for you and all of my fellow IC troopers!
    Hang in there!
    Reba in Arkansas

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  • SheriG
    replied
    Thanks

    Sorry I didn't read this thread sooner. I am sorry for all that you are going through, but I also wanted to thank you. You made me laugh, which is something I do very little of these days. I hope Freddy moves out of your pelvis soon!!! All the very best to you

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  • malone
    replied
    Barb,
    I am SO sorry that you have so little support. I think every IC patient that has to use narcotics to control their pain has some ambivalent feelings to say the least! You need a doctor that you can talk to openly and honestly and use the support gleamed from that person. Remember it is your pain and you own it so you must do whatever it takes to live your life! People who have never been blasted with chronic pain sometimes do not understand! It took my husband a few years to get on board but he eventually did. Use us--we are here for you b/c we know IC patients are the bravest people out there!!! Sending you love, Malone

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  • Brea
    replied
    Hi Barb, sorry to hear you are having a rough time. I tend to Agree with Carla,,if someone doesn't believe in the pain meds then they have never really been in severe chronic pain.Really hate to hear that you don't have a good support system at home but you know you can always come here because we have all been thru it. As far as the hydro's goes I had them every 6 months for 6 years,until they no longer worked for me. I will keep you in my prayers grouphug grouphug ...Brea

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  • Katrina
    replied
    (((((hugs))))) sorry you have to go through this, and very sorry you family isn't recognizing what you need. I understand that.....my mom had my husband hide my pain pills on me.....now hubby saw me suffering and didn't fully listen to her....but it hurt bad. Perhaps tell him how many people with IC need pain pills....and that for your to be the best you can be you need them. Perhaps show him some of the information at this site.

    Good luck to you and I hope you everything improves.

    Leave a comment:


  • ICNDonna
    replied
    Hydrodistention has been a major treatment for me since my diagnosis in 1975. I have now had 35 --- and my bladder is about the same as it was at the beginning. I think I actually do better than I did then because I have learned which foods and drinks to avoid and how to deal with flares.

    When I go into a flare that won't go away, no matter what --- we schedule another hydro. The shortest time I have gone between procedures was six months --- the longest was 22 months. I had my last one in July 2003 and I'm still going strong.

    Warm healing thoughts,
    Donna

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  • dixiefireball
    replied
    i had one doe within a six mths peroid when first dx. but they only sent me in more pain. i'm so glad it help you the first time. and hope it will help you again. and hon my husband was first the same way about me taking pain pills he was afraid i would trun out like his sister until my uro had a good talking to him and showed him my bladder. now my husband is behind me a 100% he even helps me take dmso at home when needed. if you need those pain pills and your doctor said you need them take them. i know you must have stress on you with your husband leaving for so long i will be praying for you and i also pray you have a better tomorrow.
    grouphug

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  • Sarojini
    replied
    Ooooh, it makes me SOOOOOOOOO mad to hear your hubby is not supporting you in the manner you need him to!! God, I wish I were closer, I'd come over there and give him a piece of my mind!!!! wink

    I realize he may be stressed about going to Iraq, so admittedly, this isn't the best time for him; however, I still think you need to get more support.

    I am lucky... my hubby is so supportive and he makes me feel like despite IC, I'm superwoman. I even tell him what I read on these boards about you poor girls who have less-than-sympathetic men. Even HE is appalled.

    You need support and TLC, not nonsense about what "drama" there is now!!

    If you cannot get this TLC from your hubby right now, and you feel like doing so, please PM me or email me at [email protected] if you want to talk privately about this -- I can tell you how my husband and I have dealt with (and in some cases, how we are STILL dealing with) the IC situation...it is an ongoing process, I believe.

    If not, that's ok too...I hope you're doing ok...

    Jen

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  • JAF
    replied
    Sorry you have been having a rough time. I hope you are doing better. I don't know if it would help for your husband to read what some of the others on here go through. Maybe he would be more sympathetic then. I will send you a hug and hope for better days. grouphug

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  • chicky78
    replied
    Wow...your post really hit home....I am in the same boat, with family saying the same thing to me. I have not come up with a solution to that one just as yet! But for the hydros, I use them as a treatment option as well....at first I was having them every three months, then I was having them every six months and now my uro will only do a max of one a year. Right now I last about six months in remission and then the pain returns so I might have to start to look into other options soon....I have also heard other scary things, like if you have too many of them because they are stretching your bladder then the bladder muscle starts to lose its elasticity (which would make sense) and I don't want to be in the situation of incontienence (I am only 26 years old)....anyways, good luck!

    Leave a comment:


  • carla_2004
    replied
    Barb, I'm sorry to hear that you were in the hospital this week. Hugs to you grouphug

    Re: pain control. It's probably safe to say that a person who believes that "narcotics should never be used" is most likely someone who has never lived intimately with chronic pain. Severe chronic pain has a way to permeate your soul and wear even the strongest person down.

    Many spouses respond to chronic illnesses (such as IC) in different ways. Some accept it, some are in denial, some are sympathetic and supportive, some are angry. Give him or other family member information if they ask- geared to their level. It is reasonable to tell our loved ones when statements they may automatically say are not helpful to us.

    I hope you feel better soon.

    hugs, Carla

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  • redracer8
    replied
    Barb,
    Hope your feeling better sending you a big hug grouphug !!!!

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  • Babs RN
    started a topic Admitted to the Hospital

    Admitted to the Hospital

    Hi again all!
    As if the beginning of the week wasn't fun enough, I got admitted to the hospital again--the antibiotics for the pyelo apparently weren't doing their job. I'm out of the hospital now, and this has to be the longest flare I have experienced to date. The bright spot in all of this is that one of the general surgeons I work with (I work in a clinic with general surgery, plastics, ENT and urology) advocated for me and jumped on the urologists to do something definitive ASAP. The pain has been horrific(I think Freddy Krueger has taken up residence in my pelvic and flank regions). I am already back ar work because I am afraid that if I don't gut it out I will be fired. On top of that, my husband is going to Iraq for a year. I do have a couple more questions for you guys if you don't mind, How often do you get hydro's done? It worked really well for me the last time and wonder if there is a standard time frame in between. My other question is how to address family regarding pain control and the actual disease itself. My husband thinks narcotics should never be used and that I'm wimpy when I take them. He won't attend any appointments with me, and gets extremely upset when things are bad. I usually get the line "ok, what kind of drama is it this time" Sorry I've been rambling but I know everyone on the boards have a wealth of varied experiences and are great resources. banghead
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