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

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  • #16
    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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    • #17
      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, 11:58 AM.
      *IC-- Summer 2004; PFD--October 2005
      *Fibro--Fall 2000; CFS-- Fall 2000
      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

      Total Abdominal Hysterectomy--adenomyosis--9\08

      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

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      • #18
        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
        Hugs and Wishes for Pain FREE days!!,
        Kara


        www.loveforearth.net ~reducing plastic waste one bag at a time~

        Facebook: Kara Kaiser
        Twitter: Love4Earth

        Me and my Guccigirl... she helps me through those painful hours!

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        • #19
          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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          • #20
            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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