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Hi everyone - looking for support

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  • Hi everyone - looking for support

    Hi everyone. I feel like I just need a place to get my story out so I figured I would start here.

    For starters, I am very fortunate to be where I am in life. From an emotional standpoint, I had a rough childhood. I'm in my early 20s now, and I have finally started to grow into my personality and learn to love myself.

    I am in my second year at a top law school, and I finished the first year in the top five percent of my class. I have received numerous honors and accolades, but I'm completely miserable.

    Despite my academic success last year, the onset of IC came at the most inopportune time - right before final exams. I didn't have much bladder pain, but I had a lot of frequency (every 20 or so minutes). I constantly felt like I had to go to the bathroom. Obviously, this hindered my concentration immensely. Because I did not receive an official diagnosis until after exams, the university I attend refused to grant me accommodations to take my final exams. That was somewhat understandable, given the doctors initially thought I only had an infection. Thus, I sucked it up, took my exams and obviously did quite well.

    But over the past five months, my diagnosis of IC has completely changed me. I'm depressed and lethargic. All of my friends used to comment on how I was an unusually motivated and driven person. I would study for 10-12 hours a day and lift weights five times a week. Now, I'm lucky if I'm not depressed enough to study for 1-2 hours, and I have stopped working out almost entirely. Moreover, my diet has become terrible. I used to each very healthy and was in fantastic shape, but now I'm just not motivated to treat my diet with any seriousness. I eat junk food probably because it brings me a few moments of satisfaction.

    I am not a person who likes to discuss my problems, so not many of my friends know about it. But they've noticed the change - I'm simply not the same person anymore.

    Like most of you, I have my good days and my bad days IC-wise. Sometimes, I even think I'm starting to go into remission, but the frequency comes back with avengance. My urologist doesn't believe that my case is severe enough to warrant going on Elmiron. What's more, even if he did, it would cost me close to $500/month because I don't have prescription drug insurance. Unfortunately, my parents don't seem to understand my condition. They figure that if they see me go two or more hours without going to the bathroom, that I'm fine. Of course, they don't understand that during that entire period, I'm not enjoying myself because I feel like I constantly have to go to the bathroom. I even mentioned taking a leave of absence from school just to help me better deal with this, and my parents brushed that idea off completely like nothing was wrong.

    I feel like I've fallen apart, and I know that emotionally. I simply cannot pull myself together to fight through this, for whatever reason. I feel like I have lost two things I immensely valued in my life - my drive to succeed academically and my ability to take care of myself. Three years ago, I was diagnosed with Crohn's Disease, and I fought through that by completing changing my diet and getting into phenomenal shape. My doctor considered me a great success story in that regard. But, I don't know, something about IC is different. I feel like I can't shake it, and for some reason, I have lost that fight and drive inside of me to do whatever it takes to not let IC stop me.

    I just feel hopeless, and I don't really have people to turn to because they either don't understand the disease or I don't want to make myself vulnerable to them.

    I'm not sure what this post is going to accomplish, if anything, but I just needed to write down how I'm feeling. Thanks to anyone who takes the time to read this.
    Last edited by ICNDonna; 10-06-2011, 03:15 PM.

  • #2
    I'm so sorry you're in such a difficult place. I encourage you to talk with a proessional counselor about dealing with your disease --- it does help.

    And I suggest you talk with the disabilities office at your school; several people here have gone that direction and have found it makes life easier.

    Sending warm healing thoughts,
    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

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    • #3
      I'm glad you came to this forum and introduced yourself. I understand what your going through and the feelings you are experiencing. I am experiencing them myself. I am still going through the diagnosis process but am 99% sure I have IC.

      I was diagnosed with Crohn's colitis 16 years ago. At the time I had just returned home from an adventure of a lifetime. I was devastated and thought my life as I knew it was over; I would never travel again, I would have to give up all of my favorite foods, I couldn't exercise, etc.. Well, like you, I fought hard and beat it! It took me two years to get it under control (I refused to take conventional treatment). I now have flares every 3-4 years. I only take meds at the time of a flare and nothing for maintenance. I resumed my worldwide escapades, became adventurous with my diet once again and took up all sorts of exciting and adrenaline inducing activities. Crohns did not beat me!

      I will admit that I, too, am having a very hard time battling the emotional rollercoaster that comes with IC, but if we have done this once we can do it again!!! Don't give up the fight! You might try and muster up the strength to put yourself on the IC diet. It really does help. State of mind helps too. You have to remember that people do go into remission. You can too!! Please come to this forum at anytime. Reading your story and your stuggles gives me strength as well.

      We CAN do it!

      Suzi

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