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Meeting Ginny

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  • Meeting Ginny

    Today I had the great pleasure of meeting Ginny, one of our ICN friends, in person. She only lives a few miles from me, it turns out, so she came and got me and we went to a local coffee house. Ginny is a terrific person, and it's amazing to sit and talk to someone who absolutely gets it.

    I've had the pleasure of speaking to quite a few of you on the phone (you know who you are ), but this was my first in-person encounter. Thank you for this afternoon, Ginny!
    Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
    Wishing you happiness and good health, and all the best out of life.

    Peace, Carolyn

    Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007

    On the Beach with IC

  • #2
    Isn't that great, I got to meet Amy a couple of weeks ago, and you feel like long lost friends after talking so much here. I wish Amy lived closer, but I plan to go visit her farm in the summer with my son.


    • #3
      That sounds so nice Carolyn. I have been hoping to find someone in my area w/ IC and some people have been in the state but not really close by. I'm glad you had such a nice time

      I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
      1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
      2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
      I have tried every oral medication as well as rescue instills and DMSO.

      I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

      Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
      Also proud mom to the best Bullmastiff on earth, Claus


      • #4
        Thats great! I wish I could hang out with someone too, but not many people in my area.

        IC diagnosed officially via cysto/urodynamics 1/26/07

        Grade II Endometriosis diagnosed via lap 12/11/07

        "Fall down seven times, Stand up eight."

        "Life is a tragedy for those who feel and a comedy for those who think."

        Current Treatments:
        Interstim Since 5/25/07!
        Birth Control


        • #5
          Carolyn...I am so happy you were able to have this experience. It really is wonderful meeting someone in person who has this disease because you have an instant relationship and understanding. You don't have to go into detail explaining things. I have had the pleasure of meeting three people in person. One who is an ICN Sister and two who are not. I am also anticipating meeting two more ICN Sisters in the near future.

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.

          Link to the ICN Patient Handbook:

          Link to the IC Diet:

          IC 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.


          • #6
            That is AWESOME! I am glad you got to meet and had a great time! It was great getting to meet Marilyn. She was the first one I had met in person. Marilyn, I cant wait for ya'll to come on up! We will have loads of fun! I just wish you lived closer. (She lives in Nashville, where my pain clinic is.)

            I wish I had some ICers that lived in my town too. So far, I have come across one on the ICN that lives within 30 min of me. (Technically, we are in the same town.) I was so thrilled to find her! She is new to the ICN and we have been PMing, but havent met yet. I would love to have enough to have an IC Support Group.

            Anyway, that's awesome that you got to meet your first ICer! It is so nice being able to talk to someone in person who "gets it".



            • #7
              That is great! There is a lady here who lives in Austin, I met her in person finally in October or November. I talk to her on the phone quite a lot. Not as much as we like due to my work schedule and by the time I get home; I'm tired! (bonus part of all of this our husbands get along as well!!)


              • #8
                From Ginny

                I just saw your post. It was great meeting you also. What I wanted to tell everyone is Carolyn and I both worked for the same University before going out on disability not too long ago. What a small world!

                When we think we are all alone in this fight for health we meet someone so close to home.



                • #9
                  That's great!
                  I hope to be able to sit down at a table one day with Kara & her family,
                  That would be so amazing . I'm glad you were both able to meet!
                  Hugs Sandra
                  "Never Give Up."

                  To view pictures of my creative interests and Maine Coon kittens click here:[email protected]/

                  My Photobucket Link: