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IC in Germany and Europe

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  • ldwall
    replied
    Guten Tag, or should I say Sad Day? (dont know how to translate that at 1 am) Well about college, no I don't have tests every week. But I do have 3-5 per 12 week term, along with 3-5 assignments (all typed or hand written) I also take my classes on-line so I have to read the texts very carefully and take lots of notes. As for doing all of it with IC, I guess I never considered it would be hard. Until recently it never bothered me, I would just get up and go potty while thinking about what I just read, but now everytime I get up I loose my train of thought (concentration). My kids are used to me being sick, I have had health problems of some sort my whole life. So they are just used to it. My oldest is 10, a boy, Grace is 7, and Luke is 5. Luke spent his first 4 years in Mannheim. Boy do I miss Germany! I wish I could go back. For some reason I always felt safer in your country than I have ever felt in mine. After Tuesday, the whole reasoning comes back to me and I long for a safe peaceful place. Keep in touch. [email protected]

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  • Rinna and Marko
    replied
    Dear Bridget,
    thank you very much for your email. We are shocked and paralysed by the tragedies that happend in NY, in DC and near Pittsburgh and killed so many people.
    It is good to hear from you. You must be a very strong woman, having survived two distinct IC diagnoses. I'm also taking Elmiron (it's called Pentosanpolysulfat SP54 here) and I find some relief from it, but there are still often severe IC/vulvodynia/IBS flares because I don't take pain meds. I plan to try it again some day. The only pain med that has ever helped me has been morphine, but I have had problems with the adjustment and the side effects and so I don't take any pain meds at this time. Awareness of IC and of pain therapy with opioids is raising in Germany, but it's just at the beginning. I still continue to translate the WWW-texts, and plan to send them to Jill, hoping that she will agree to it. It would be wonderful to work together worldwide. We know IC patients in Hamburg who are very engaged in IC work.
    We send our best wishes and our sympathy,
    Rinna and Marko, Remscheid, Germany

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  • BRIDGET
    replied
    :p Corrina and Marko :eek: How are you both doing I jsut now read these posts?!! My whole family is from Hamburg My mom was born and raised there I have never been there and after the planes crashing into the World Tower center and the pentagon I may never go anywhere again!! Ha!! Well I have had IC for almost 4 yrs diagonised but I suspect I had it much earlier it's the stress I believe that brought it out 4 years ago I had a very stressful life. Since then I have been ok but this year I was diagonised with panic attacks and once again the IC flares started again. I take Elmiron and do antacids and Prelief that seem to help a bit but in a terrible flare there s just aleve, urimax, and other pain meds that can help. Its been a tough ride for me but it seems yours has been tougher. Good to hear you fought for what was right!!! How are you now Corrinna and what treatments are prevalent there in Germany for IC... My direct e-mail is [email protected] I AM BRIDGET AND I AM FROM ARIZONA!! Like to hear from you all... God Bless, Bridget

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  • yvette
    replied
    (((((((Rinna and Marko)))))))))
    I am so glad to see you here again! I have sent email in the past, but it must have gotten lost. No matter, I am glad to see you have posted again! I wish you both best wishes and warmest regards.
    y.

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  • ragsmom
    replied
    Rinna and Marko,it was sooooo nice to hear from you.I am very sad for all of the problems that you have had to endure and dealing with IC along with it.I was just thinking about the two of you the other day and how things are going?At least you are over one hurdle with the Disability but your friends are not true friends.They would be there for you no matter what.I would just call them acquaitances.Remember,we are hear for the both of you and we consider the both of you a part of our extended family.Be good to each other and I will e-mail later.Sending BIG and gentle hugs from across the ocean to the both of you,delores [email protected]

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  • Rinna and Marko
    replied
    Dear Lesa, Lisa, Delores, Alexa and Monique,
    how are you? Thank you very much for your
    messages. We would like to apologize for
    this late answer and we hope that you
    will understand it: In the last months, we
    have fought against the bureaucratic system,
    successfully, but it took all our power.
    Corinnas IC had to be confirmed and confirmed
    by doctors again and again, now it is
    recognized that she is 70% disabled and
    100% disabled to work, that she cannot take
    part in university examinations at this time,
    and she now gets social security income,
    furthermore we had to move to another
    apartment with a low rent. We have withdrawn
    from our friends during this fight - no good
    reaction, we know, but there was no power
    left - and now we would like to ask, if you
    still talk with us??? We send a message to
    Monique with information about IC in Germany.
    We send a letter to Jill Osborne about our
    German translations of the ICN texts and hope
    that she will publish some of the texts. If
    you know a bilingual person who is prepared
    to answer some special questions, we would
    be glad, to her from him/her, because there
    are some questions left, e. g. some
    American abbreviations that we could not find
    in our dictionaries (e.g.we know that M.D. is a medical doctor, but we do not know all the
    other academic degrees) or some units of
    measurements in IC recipes.
    Lesa, we enjoyed our online conversation very much and your patience with us during that
    night! Lisa, we are surprised and impressed that you are studying at a college, being
    mother of three children and having IC -- how
    the hell do you manage this alltogether???
    We know American colleges only from the
    Hollywood films (e.g. those films about college love stories which always make Corinna
    cry a lot), but as we are informed, you have
    a lot of examinations there, almost every week, is that true?
    We send you best wishes from here and hope to
    hear from you again, how you are doing!
    Corinna and Marko

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  • Monique
    replied
    Sorry!! [email protected]

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  • Monique
    replied
    Hello, Rinna und Marko, I am Monique von Germany and I would like to contact you! It's so hard to inform the doctors about IC and I would like to get some german information for them!!!!!
    They urge me to go into a psychosomatic hospital at least for 6-8 weeks! They drive me mad and treat me like a mad person!!!!
    Please help!!

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  • ICNLesa
    replied
    Rinna and Marko!!

    Willkommen zu ICN! Ich genoƟ, mit Ihnen gestern zu sprechen!

    I'm glad that you found ICN and that you are helping other IC'ers in Germany! Welcome!

    Lesa :O)

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  • ldwall
    replied
    Welcome to the ICN. I lived in Mannheim for three years, and recieved my IC care in Landstul at the american hosptial there. I do speak some german, and I am glad to see others from Germany here. I am orginally from Michigan, but am German by ancestry. My maiden name is Freas. I am happy to talk to you whenever you want, I have some experience in having IC in germany, and as to how it is treated there. (My first IC doc in Germany was a Russian, who had lived in Germany for 20+ years...so he treated me like I was a european!) I don't write German as well as I could, I am a bit out of practice, but I can still read most of it! My email is [email protected] Oh and if you send me a message I can't read, my next door neighbor is german. Love to hear from you, Lisa.

    I am also a college student with IC (and mother of three) so I have some suggestions as to how you do college and IC at the same time, email me with some questions and I will do my best to answer them for you. Lisa

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  • Rinna and Marko
    replied
    Dear Ragsmom and Alexa,
    thank you very much for the warm welcome on the ICN website! We are really overwhelmed by
    all the information and it is a good feeling
    to find so many other IC patients.
    We work as volunteers (state coordinators for
    Northrhine Westphalia) for the ICA Germany.
    As we have already explained on the Newly
    Diagnosed Board, post: introduction, IC is
    a taboo topic and a very isolating disease in
    our country. In her desperation, Corinna has
    translated the internet texts of the ICN and
    the US-ICA into German (this took about three
    years) and we are very, very grateful for these texts. We contacted Jill and perhaps she
    will publish some selected translations.
    Thank you for answering! Best wishes to the
    other side of the globe!!!
    Corinna and Marko.

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  • Alexa
    replied
    Dear Rinna and Marko,
    Welcome to the ICN! I don't know about IC resources in Germany, but I want to tell you that you are not alone! We are all here to support you and help you.
    Please email me if you have any questions at [email protected]
    Take care,
    Alexa

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  • ragsmom
    replied
    Rinna and Marco,welcome to the IC network.How did you find the web site?We have almost 1,000 registered on this sight,from the US and Canada.We are all here to help in any way that we can.You by all means are not alone with this devistating disease.If you would like to e-mail me please free to do so at [email protected] I can also translate from my computer. hope to hear more from the both of you.Healing Hugs, delores

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  • Rinna and Marko
    started a topic IC in Germany and Europe

    IC in Germany and Europe

    Hello everyone,
    our names are Corinna and Marko. We live
    in Germany. Corinna is IC patient. We
    would like to talk about IC with other
    people from Germany or Europe.
    Best wishes and greetings,
    Corinna and Marko.

    Hallo an alle,
    wir sind Corinna und Marko. Wir wohnen
    in Deutschland. Corinna ist IC Patientin.
    Wir moechten mit Menschen aus Deutschland
    oder Europa ueber IC sprechen.
    Mit den besten Wuenschen und Gruessen,
    Corinna und Marko
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