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I have read all of the posts here and it helps me to know that I'm not the only person out there who is suffering. I live in the UK and it seems that America is way ahead, although, not as much as it should be. I too have been in and out of hospital with chronic pain around my kidney area which travels down to my groin. There is blood, protein and lucozites in my urine and very often I will pass clots. This last episode dates from when I was found collapsed in school where I work at the beginning of March, to now where I am on modified release morphine with oramorph as a back up for breakthrough pain. I don't know where to turn at all. I know how it feels when a doctor looks at you as if you're mad and are making it up. I also know that this pain is real and I fear that I will never get back to work again. I am 43 years old with two young children at home and an older son who is severely disabled and lives in supported living. Day to day functioning is really hard, I can't look after myself never mind my family, and our finances are becoming a mess. I feel alone, unsupported and frightened. I just want to be the old Sue again, full of life, fun and laughter. I want to be a good mum to my kids. I feel I am wrecking their lives as well as my husband's. Sometimes I do feel that everyone would be better off without me here at all. I never wallow like this and I really hate myself for it. Is there anyone out there that feels this way?

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i have suffered with lphs for 10 years, and i am getting tired. i now have other health issues, that scare me. ive had so many cat scans that my white cell count is very high. my doctor is very good, but i feel very defeated.just when i think i am doing ok i get another flare-up. al least once a month. just recently got out of hospital, its been a while since i had to be admitted. now my mental health  is getting worse. it never ends. i feel lost and alone. my boyfriend  cant understand this, even though he's in a wheelchair from motorcycle wreck. my children and their dad think this all in my head. it feels so awful to try to get through my days.
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i completely understand this condition . its awful and lonely. no one gets it. i live with this also, and i feel like i am fighting a loosing battle. i get feelling better and then i get another flare-. it is very frustrating. i hope that you know you are not alone.
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