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My first review....

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  • bert334
    replied
    Hello sisters-n-pain. I just dislike this IC so bad I can't stand it, but this message board is wonderful. I get so much encouragement and support and suggestions here! You are all wonderful to me! I have some questions about the SSI. When do you start it? I mean, do you have to be on death bed? Or does the doctor have to say YES you have IC? Does it take forever to get it going? I have had about 10 H&C's and numerous urethra dilations....and it never ends! My next step is the Interstim....which I am refusing to do right now. Will this hinder the SS? Do I have to have that surgery to get it? What processes do I need to take to start this? I feel like my life has came to a hault now....I was going to college...and never fails...in the middle of the semester...here goes a H&C!! ANd you cant miss any classes there....it goes against ya. I got really discouraged and quit after my last semester. I am 37 so I dont guess college is all that important. The days I aint having surgery, I have to make sure I sit close to the door, just in case of an urgency to pee. One day, during a test, I had to go sooooo bad, but had to hold it....I was afraid the teacher would think I was going out to cheat or something. I cant work at a cash register....when can you go pee there? Gee...what can we do? Where can we work? Any suggestions? I would like some help beginning the SS.
    thanks alot....I wish you all well in life! [img]biggrin.gif[/img]

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  • Dianna Maddison
    replied
    Terri,

    I am hoping that everything goes as smooth as ice at the meeting. As you know I have been toying with the idea of leaving work. Perhaps a leave of abscence may work. I am not sure how my employer will respond to this. I have been working with him for the past eleven years and he really counts on me. On days when my IC is so bad that I just can't walk (like last Monday) It is difficult for him to see patients when he is on his own. The receptionist can only do so much. I know he won't like the idea of me taking some extended time off and I am not sure if it would solve anything. My IC is there all the time. It is not as though I could lie in bed for a few months and miraculously I would be cured. If only!!!
    I also hate the idea of not having my own pay cheque. I love being able to buy things without having to plan for ever for it. If I took a leave or quit all together the money would be gone.
    Anyone have any suggestions on what may be a compromise?
    Any ideas of what I could do to help my IC stay at arms distance.

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  • Julie B
    replied
    hi honey..............good luck to you...........you have been able to navigate the system gracefully so far.......no reason to think it will be different this time XOXOXOXOX

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  • Teri
    started a topic My first review....

    My first review....

    I sure didn't think it would come up this fast but it's here. At first they requested that I appear, with my husband. I called and explained that I couldn't because he couldn't bring me and they said no problem. Just fill out the paper work the best you can and if we have any questions we will contact you. And, if there is something you are unable to answer, we will look at the original application.

    I have so far been treated so great by the system and my heart just breaks for all of you who have been put thru complete and total hell dealing with them.

    hugs to all~
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