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  • I'm a newbie

    Hi Everyone, I just found this website tonight after searching for one for quite a while. I was finally diagnosed last week, after almost two years of different treatments for everything my pain wasn't. I'm only 24 years old and am feeling very overwhlemed by it all. Its nice to see some other young people on here as well because I was beginning to get the imprseeion it is an "older persons" issue. Thank goodness I'm not alone. I don't think I have fully accepted my diagnosis yet. I have a pretty crappy urologist right now who does not seem to care about this. Thats pretty frustrating. I live in Toronto, Canada. I am starting teachers college in the fall after beinbg out of school for two years so am pretty nervous how IC and school will mix. Any suggestions from anyone would be appreciated on that. Thanks for letting me introduce myself.
    Hope is a good thing.....maybe even the best of things, and no good thing ever dies.

    The Shawshank Redemption

    Friends are those rare people who ask how we are and then wait to hear the answer.

    Ed Cunningham

    Do what you can with what you have where you are.

    Theodore Roosevelt

  • #2
    Hey Chicky!

    Welcome aboard and we all hope you find the site useful and comforting! I'm twenty, have been diagnosed with IC for five years, went to college for a year and a half, and got married last October. It IS possible to do it all, but I reccomend taking it one day at a time and not trying to do it all because your health is so much more important than anything else.

    I was on Elmiron until last month, have you been started on any meds? I'm sorry you're not feeling very good about your Urologist, is there anyone else in your area you could try? A good doctor is so important, but more than that you need to take the time to get to know your own body and the variations of IC in different people. The more you know about yourself and what to ask of your doctor the more useful he/she will be to you. They can treat the disease, but they can't treat the patient without the patient's help. (I know this even more these days as I work for a doctor!) Give it time to start feeling better, alot of treatments take time to work at relieving pain and other symptoms. I found that during classes I had a hard time sitting for too long so I would often let my teachers know when I was having a bad day health-wise and then I could take advantage of standing or stepping out for a break without looking like I didn't care. Sometimes they would just give the entire class more breaks so I wasn't looking like the only slacker!
    [img]rolleyes.gif[/img]
    Anyway, feel free to email me any time! I'd love to talk with you more and I wish you much success in your journey.

    Best wishes, Cam

    [email protected]
    "Yours is the face the world turns to me."

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    • #3
      Welcome to the IC Network family. I'm very glad you found this site. You'll find a lot of information and support here. I suggest you read the information in the Patient Handbook (on the "Browse Our Site" pull-down menu). There's information there about treatment options, diet, and much more.

      I have had diagnosed IC for 27 years now and if there's any one thing I like to share it is that there is life with IC. It can take a while to find exactly which foods/drinks are triggers and which treatment options work best for each individual, but most of us do get there and most of us feel good most of the time.

      And if you have questions, feel free to post. We aren't physicians and don't offer medical advice, but are happy to share our own personal experiences.

      Sending welcoming hugs,
      Donna
      Stay safe


      Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
      Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

      Have you checked the ICN Shop?
      Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

      Patient Help: http://www.ic-network.com/patientlinks.html

      Sub-types https://www.ic-network.com/five-pote...markably-well/

      Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

      AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

      I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
      [3MG]

      Anyone who says something is foolproof hasn't met a determined fool

      Comment


      • #4
        Hi Chickey,
        I was also young when I was diagnosed, 16. I am now 44. I also did not have a real great doctor, he may have been a good clinician but his people skills were lousy. I also did not have family support and was not told what my disease was, just that I had a bladder condition would have to watch what I ate and live with it. Well I was terrified by the procedures and treatment and did not go to another urologist for years, just lived with it. Then in my early to mid 30's, I saw another bad urologist and again have not seen one since. Well, I want you to know that was a big mistake. I know now I could have had a better quality of life and even though as Donna said most of us do have good lives, mine could have even been better. So I am going to a uro. next week and boy am I feeling positive about this. I feel empowered because of what I have learned and will be in control of the situation. Learn what you can and know you aren't alone and I know it is hard sometimes but a positive attitude goes a long ways! Good Luck [img]smile.gif[/img]
        Jo
        Jolene

        "Life is what happens when you are making other plans" John Lennon

        IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

        Information for Patients can be found here.
        http://www.ic-network.com/patientlinks.html


        Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




        Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

        "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

        Comment


        • #5
          Good luck with your IC, Chickey. I was born in Hamilton, moved to NY when I was 8. Used to go to the CNE every summer, very fond memories too., Sandy

          Comment


          • #6
            Dear Chicky,

            Welcome to the ICN! [img]smile.gif[/img] [img]smile.gif[/img]

            First of all, congratulations being accepted to Teacher's College! I just finished up Teacher's College in Vancouver...and just to tell you....it is possible! I taught ESL for 3 years prior to teaching children, and even though teaching is a demanding and challenging profession, it is extremely rewarding and fulfilling as well. I'm sure you will be a great teacher.

            While I was in university, I registered with the Disability Resource Centre (it might be under a different name at U of T). Basically they provide support and services to students with "disabilities" but please remember that the word disability has a wide-ranging definition. For example, some of the accommodations I received were that I got to take my exams at a different location, right beside the bathrooms! Also, if I was too sick to attend class, I had a notetaker who went for me. I strongly suggest you check out that organization and see what services they could provide for you.

            I used to live in Toronto and the urologist that I saw was Dr. Lesley Carr at Sunnybrook hospital. Perhaps you can get a referal to see her if you're not satisfied with your current urologist. There are also some other ladies who see urologists in Toronto, and they might be able to recommend someone as well.

            I know how overwhelming this all seems right now! I was 20 when I was diganosed and I am almost 26 now. But we're all here to support you! Good luck [img]smile.gif[/img]

            Take care,
            Alexa [img]smile.gif[/img]
            My story of healing and hope http://www.ic-network.com/patientstories/alexa.html

            Comment


            • #7
              Hi Everyone, thanks so much for your replies. As I said, being so new to this I am still feeling pretty overwhelmed. It is good though to finally have a diagnosis, it is so frustrating to be put on so many other different antibiotics etc... for other conditions. Mie took just under two years to diagnose, hoeever I have heard some horror stories of a lot longer than that so I guess in some ways I should feel lucky! Thanks for the uro name Alexa, I will look into that. Also, thanks for the school suggestions. I will look into what kinds of accomodations can be made to help me out. [img]confused.gif[/img]
              Hope is a good thing.....maybe even the best of things, and no good thing ever dies.

              The Shawshank Redemption

              Friends are those rare people who ask how we are and then wait to hear the answer.

              Ed Cunningham

              Do what you can with what you have where you are.

              Theodore Roosevelt

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