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Do you feel like a "victim" of the IC and the pain?

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  • ICLori
    replied
    Oh, I should add, the description of the rat video was from a lecture by Dr. Daniel Brookoff, on this site!

    I agree, I think the rat really tells the truth about what this disease is like, at least when it's not under control with medicines/treatments.

    Blessings,
    Lori

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  • pingpong
    replied
    I found Lori's description of the video showing the rats that had been "given" IC really interesting. An animal who is sick or injured instinctively knows that it can't appear to be sick or injured, since this would broadcast its weakened state to its predators who will then move in for an easy meal! The fact that the rat was in so much pain that it tried to chew its own bladder out of its body demonstrates how excruciating the rat's pain must have been. And, no, the rat wasn't imagining the pain or blowing it out of proportion!

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  • Kara Isabel
    replied
    Such wonderful replies! Thank you.

    I think I am somewhat "shocked" that I would appear to come off with a "victim" mentality because MOST days I act tough. I tell people "I'm Fine" even when I'm not, but I do succumb to frustration, and I can't always hide that.

    I think I've learned an important lesson to keep my mouth SHUT to my friends about this, atleast the ones that know nothing about IC, and my other ailments....

    Lately, I'm tired of whining about it. To my family, doctors, etc! I just wish it wasnt' such a big part of me. I wish I could make it go away, sweep it under the rug and move on...but that's a fantasy. My reality is much different.

    I feel I HAVE been proactive! I've been in and out of several doctor's offices for the last three years! My medical bills are out of this world high! I do TRY to get better, I do try to live.........

    *sigh*

    All I can do is keep on trudging along.

    love,
    Kara

    Leave a comment:


  • SandyRN
    replied
    This post struck a cord with me because of what I'm going through right now. In a way I DO feel victimized because I really tried to take control of my healthcare, tried to eat right, tried to take the right meds at the right time at the right dose, try to sleep well and do try to get off the couch every now and again...but here I am hit with this new slew of symptoms that have left me feeling afraid all over again. The pain is definately the worst symptom, but it's not the only thing that leaves me feeling overwhelmed, and in the "why me" mode.

    I simply want to find a doctor who can tell me what in the WORLD is REALLY wrong with me, why I have rashes on my face, why my body itches from head to toe, why I have terrible scabs coming out of my sinuses. Why my kidneys freaked out last week, why I'm so weak...on and on...

    Sometimes it's just overwhelming...we're only human and we can only deal with so much at a time. Just when you think you might have your life as together as it can be with a bunch of chronic illnesses, something else happens to slap you in the face. In your case your doctor decreased your pain meds. Why? I'll never really understand his reasoning to take away a dose of your daily meds. He probably is just being cautious, but then again, he doesnt live in your body, and he surely doesn't see the pain you have day in and day out.

    I guess what I'm trying to say is I used to be independent, very much so. I made a good living, I was a single mom, did my own thing, used to enjoy life very much...and I feel like that has been taken away from me, and I'm terrified of what is in store for me with this Lupus stuff.

    I'm trying to keep my chin up and have some faith in this new rheumatologist that I'll be seeing. Maybe this will be THE doctor that can help me get my life back.

    So, all that to say, yes, I feel like a victim sometimes...and it's not for pity, it's because I just want my life back.
    Last edited by SandyRN; 03-08-2007, 10:58 AM.

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  • ponytail
    replied
    This is such a fantastistic thread and I would just like to say that it is wonderful to have a group of people who are so unafraid of expressing themselves so openly. I went for nearly 10 years with ic without being diagnosed. In the beginning the pain was chronic and I could not get a single doctor to believe me about the pain I was in. At the time I felt you wouldn't leave an animal to walk around with so much untreated pain so why a human? It was bad because my blood tests etc were coming up with negative results (although there were clues in that my spleen was inflamed) and it wasn't for a year or so that I had my first laproscopy/cystoscopy. In the meanwhile the doctors sent me to a clinical psychologist to asssess me as they though it might be in my head. I don't know if it was worse having such chronic pain or having the professionals disbelieve. I felt like a victim then and I wondered for years if it was something I had done or if I was really mad and my brain was causing me to have pain. My close friends did support me for nearly 10 years - even though they were confused - but now my two close friends seem to have abandoned me. It was when I started to give up smoking and then alcohol and then elimiate foods from my diet that I think they thought I had gone mad or was just being self indulgent. I don't know. But I miss them and at 40 it is hard to make friends. However, it is great to read about IC Loris's explanation on pain as, in the early days, I was constantly in tears in the doctor's surgery and this was why they sent me to a psychologist. Of course, you will be naturally emotional if your body always hurts bad - I could never get why other people couldn't get that - but interesting to hear it is a feature of the visceral pain. My recent cystoscopy showed a typical ic bladder and I am now being treated properly by the medical system. Sorry to say, today I do still feel like a victim of the illness as it robbed me of child bearing years etc, but I haven't victimised myself, which I think was what Kara Isabel's friend implied. We none of us wallow in our illness but it is a big feature of our lives. However, when you have a chronic syndrome that people can't see - it is important for people to believe you and support you, otherwise what else is there?

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  • malone
    replied
    Lucky

    Hello, I agree with Sarojini in every way! I also realize how very lucky I am. My husband understands as does my bestfriend and my pain mgmt doctor--everyone else well, I simply do not have the strength or time to care! These 3 people have at one time or another told me I am their hero because I deal with this hideous disease every day--I am so lucky! However, I will say that I do not discuss it with many people--I was travelling with a group of women and when it got to be too much I just bowed out with a brief explanation of IC. The boards are the place where I come to complain the most-lucky again to find my "sisters" who know and have gone through it all but listen anyway! Thank you all!! I have had my days where I cry and say it just becomes so much and I am SO tired of it but I have also learned to stick up for myself esp. with doctors! So victim,no! You do not need anyone in your life who is going to judge you--she is hardly a friend. Chronic pain is the worst but we (all ICers are the best!) --Malone

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  • siriuspsyclist
    replied
    victimhood 101

    do I feel like a victim? some days.

    but the thing that frustrates me the most is that I try to get through the days and keep up my end of the bargain with the world but if I tell folks I hurt they say "oh. too bad" once or twice, but if you say it more than that they are tired of it and past it and moving on and don't you feel better yet?

    So I hide it. Or I try to.

    Recently my partner, for the FIRST time, looked over at me in the middle of a social function and quietly said "you're having a bad time aren't you, sweetie". I was shocked! I asked him how he could tell cuz I thought I was keeping it all together that day. He said he was beginning to see the differences in me on bad days - knit eyebrows. distracted. short with strangers. no smiles. slouching. no quick movements.

    I felt bad that I was "leaking it out" and yet in a strange way I felt so vindicated that he finally was NOTICING that it's bad ALL THE TIME not just when I say "wow, today was a really bad one" when we head to bed.

    but other days I try to be thankful that I am not worse or that I am not flaring. sigh.

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  • ICLori
    replied
    You're very welcome, Moonheart.

    Jen, I don't blame you for having been very angry with your husband - that was an awful thing for him to accuse you of! How unfair.

    I probably need to clarify what I meant by saying I felt victimized by IC:

    What I meant by that was, I do feel IC has altered my lifestyle, primarily because up until now, no medication has worked for me (save CyA, which I had to go on a reduced dose of, and now the pain is back somewhat) and no doctors have been willing to give me adequate pain control. So I have been pretty much left to live with the pain, and I have pain every day, and particularly at night. Not being able to sleep especially had an impact on my lifestyle. I get pretty miserable when I can only sleep in 15-minute increments before I get up to pee.

    But, on the other hand, I am not a victim in the sense of lying down and doing nothing. I have fought, fought, fought against all 11 uros/urogyns I have gone to so far, and brought in studies on new drugs to try, and tried all kinds of weird experimental things. I have tried the best I know how to get better, and I have tried the best I know to have some kind of a life outside of my disease.

    But up until now at least, my disease has had an impact on my life, I am not exactly the same as I was before IC, so I do feel like a victim in that sense.

    Blessings,
    Lori

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  • Sarojini
    replied
    Do I feel like a victim because of IC? No. Absolutely not. I simply have a disease (several of them actually) that took some life modifications and took some medications and a surgery to get under control -- but it happens to the best of us, so we make the best of it.

    I don't think your fate is being controlled by doctors. I think you are controlling your own fate by going to doctors who can help you feel better -- and that is a strong thing to do. A real victim and/or drama queen would just sit there and whine without doing anything to better her situation. That is NOT you.

    And, do my friends and family think I'm being a drama queen or acting like a victim? Well, maybe some of my co-workers, although I do not discuss my health problems in detail with them... I think they just think IC isn't too big a deal, and that my recent InterStim surgery wasn't a big deal, so they probably think I was overly dramatic by taking two weeks off to heal. BUT, I am not really close to any of them, so, while it was hurtful at first that no one even bothered to ask how it all went, I decided the truth is, I really don't care about any of them enough to take what they think to heart.

    My real friends and family have been nothing but supportive... except for my husband on occasion. We had a fight a while ago, after I mentioned one of my knees was sore, in which he said that maybe I made up pains half the time to get out of stuff, and that he felt he had to cater to me and that cut into his "schedule." To be honest, I got so angry I broke the laundry basket (full of HIS underwear) I was carrying at the time. Of course I don't make up pains to get out of stuff, and he ought to know that ... and as far as his schedule goes, um, what schedule?? He never goes anywhere with friends... the only things he actually does are go to work, watch TV, and surf the net either playing games, getting in political arguments, or reading about investing.

    He hasn't ever said it again, let's put it that way.

    But, I guess the thing is, I don't really talk about how I'm feeling much to him anymore. I don't really discuss it with anyone except my doctors now... no one can accuse me of drama if they don't know any drama is happening...

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  • Moonheart
    replied
    Lori, thank you so much for posting that. I think that maybe that was just what I'd been looking for to convey what is going on with me. I really appreciate it.

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  • ICLori
    replied
    If she did direct it at you, then that goes to show she really does not understand chronic pain, and especially the particularly miserable chronic pain of IC. You are not creating drama or being a victim, you are simply hostage to a really horrible, mean illness with no cure and no remedies that work for everyone.

    Here are some things you might want to show your friend (if you want to salvage the friendship and not turn away from her, I mean):
    ################################################
    Interstitial cystitis
    11310812 JA

    Pain and depression experienced by women with interstitial cystitis

    Women with interstitial cystitis experienced significantly increased pain levels and depression during a flare than other populations of chronic pain patients.

    2000 Women Health 31;4:67-81

    Rabin, C., O'Leary, A., Neighbors, C., and Whitmore, K.

    ##################################################
    2. Visceral Pain
    There is something called visceral pain, which is a type of pain you will feel with Interstitial Cystitis and other types of painful conditions. This is totally different. It's kind of vague --- with a more agonizing quality. It's interesting because that message is carried to a different part of the brain than somatic pain. It gets carried to the part of the brain that deals with emotions. So people with visceral pain are more emotional; they get more upset. It's kind of funny --- if you go to your doctors and you look all upset or are tearful they'll get mad at you --- don't they? It's bad enough you've got to cry in front of somebody --- they get ****** off at you for it. But that's a physical quality of the pain and it's not because you are weak. It's where those nerve signals get carried.

    ###################################################
    [Ask your friend if she thinks the rat is trying to be a drama queen or thriving on victimhood]

    It's kind of interesting. I went to a meeting a few years ago where they were talking about the science of Interstitial Cystitis. When they had patients talk, you could see the doctors didn't believe them. It's really kind of scary. Then they had someone show a video tape. This is a man from England who is able to cause Interstitial Cystitis in animals --- animals never lie. With a certain kind of chemical he gives these little rats an irritated bladder. It's very interesting --- in talking about these little rats, he expressed a lot
    more sympathy than a lot of Urologists talking about their patients. Then he showed us a videotape of a rat with Interstitial Cystitis. This is a group of doctors and patients watching this video tape. This little rat is kind of writhing around --- obviously very uncomfortable --- you kind of felt sorry for the rat. The rat didn't put on make-up, trying to get dressed up for you. The rat wasn't trying to look nice. The rat was getting worse and worse.

    Eventually this rat had such bad bladder pain, she kind of curled herself up and bit into her abdomen and tried to eat her bladder. It was really disgusting. We were just saying "Oh God." The doctors were getting grossed out --- and the patients were all standing up and saying, "That's me! That rat knows how I feel." You shouldn't have to do that to get somebody to believe you. It's a very serious problem.

    ################################################
    A 1987 study conducted by the Urban Institute in Washington, D.C., found that IC makes people so miserable that they contemplate suicide four times more often than the general population and that they rate their quality of life lower than those who undergo kidney dialysis. Nearly 30 percent of IC patients can't work full-time, according to the study.


    ##################################################
    Blessings,
    Lori

    Leave a comment:


  • IC SARAH-CPP
    replied
    I dont know if I feel like a "victim" persay but sometimes I get the "why me" thing really bad. I look at these people who I really relate to, people with great careers and lots of interests and goals and feel so....jealous I guess that they dont have to deal with pain and all that. BUT you know what? Everyone has their lumps and has to swallow them. It is just like a couple you know who you think has the "perfect" marriage and then all the sudden they get divorced. AND I always, always try to think of the many people who have it way worse than me. I am a history buff and I think of the people in WWII or the people who lived long ago when there was no anasthesia or pain meds.
    Please dont think I am trying to make light of what your friend wrote. Sometimes people can be shockingly insensitive. It hurts, I know it does. NONE of my friends understand. Not one. So I had to make the choice of giving up all my friends or just taking them for what they are and only talking about my health to the few people who DO care, my mom, my husband, and my mother in law. That is it, period. Oh and all of you! Now whenever anyone asks me how I am feeling, I just so " Oh I am okay. Hanging in there" or something like that. Or fine. because I know they dont really care, they just ask b/c they feel like they have to. My dad is especially bad and it still hurts me sometimes.
    I am sorry though sweetie. Is this a good friend of yours? One more thing I was going to tell you is that no one knows about my narcotic medications except the 3 people I mentioned above. I dont tell anyone what i take. I used to but that can lead to bad things, including someone stealing my meds. A whole bottle of oxycontin!!
    How are you feeling? Have you decided to call your doctor yet Try to hang in there!
    Sarah

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  • Want2BPainFree
    replied
    I don't necessarily want sympathy, but I would like some understanding.....that I just can't "get over it" and move on.

    This says it all. I agree with you. You are not creating drama. Your IC has created drama. Your life has turned upside down. Everything you do or don't do centers on avoiding pain.

    I liken it to asking someone, if everytime you drank a cup of coffee, it made your urethra and bladder burn and in some cases your vulva, and it made sex painful and it made riding in a car unbearable, and you had to go pee every 10 minutes and it hurts when you do, would you drink coffee?

    They probably would say no. If your friend is saying things like "narcotics aren't the only answer", it may help for you to ask her to try and be more understanding. Tell her you're having a difficult time coping, and that her saying things like that about the treatment options that are offered by the medical profession, does not help you recovery.

    Being around people that cause you stress is only going to make things worse.

    Something tells me someone else needs to "get over it".

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  • Kara Isabel
    replied
    Thank you for all of your enlightening posts so far.

    I *do* think this is directed towards me, atleast to a certain extent, because I did get an email from her stating that "hard narcotics aren't the only answer" and some other things along those lines. However, I did suffer without pain meds for a year before I went to a pain management clinic, so I did have intial apprehension about even going the pain med route, but also laying on the couch in my pajamas everyday in pain wasn't exactly "leading a life".

    And I've heard the "just exercise and you'll feel better" bs from other people too. Even my husband, who is a GREAT source of support, I don't think he fully understands the level of pain I deal with everyday. Because many times, I DO put up a "tough face" and "act like everything is okay" when my insides are ROTTING and killing me...when I CAN"T have my favorite foods and I cannot go have a taco and a margarita when I get the whim to I don't want to feel like a total victim, but the feeling remains that its just "not fair" sometimes, not to ANY of us.....and I have CONSTANT reminders of my condition when I see other people laughing, dancing, eating, just doing things that many of US can't do on a regular basis.

    And yes, the frequency is just as bad as the pain, I agree! It is always having to map out the restrooms everywhere I go! The IC is constantly on my mind, in the back of my mind.

    Am I causing drama? I don't know, maybe I am. Maybe I just want to *scream* and have everyone UNDERSTAND. I don't necessarily want sympathy, but I would like some understanding.....that I just can't "get over it" and move on.

    Love to all,
    Kara

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  • ICNDonna
    replied
    It's entirely possible that she does not mean you. Try not to dwell on it.


    Donna

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