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me oh my I.C.

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  • me oh my I.C.

    Hello there. My name is Kirsti Dare and I am 23 years old. I was diagnosed with Interstitial Cystitis in October of 2006. I actually joined this support site before I was even diagnosed officially with I.C. I went to visit a urologist for the first time ONLY after taking my father for a procedure at the same office. While I was waiting for my father I realized that through all of these years, referred to so many different doctors, so many referrals, and I had never even seen a urologist. I was in so much pain,and utterly convinced that this was all in my head, and that I was just a hypochondraic with panic attacks and growing pains. Numerous trips to the E.R. helped not the slightest bit, only discouraged me more than ever. I felt like a waste of not just my time, but everyone else's. Then why did it hurt so bad those days, that I could barely even walk? However, something inside told me, that I owed it to myself to exhaust all options before I could proudly proclaim that I was merely a full blown hypochondriac. So after waiting in the office long enough for my father to come out of surgery, I thought to myself, might as well. I made an appointment, gave them all my information, and waited. A couple months later I walked in very skeptical that anyone would help me, prepared to turn around and say farewell to another copay, hello to more questions and endless suffering without the affirmation of my sanity. It was then that I met Dr. N(would tell her name proudly not sure if i can). She was extremely,young, energetic, and very receptive to me. She seemed very compassionate and very attentive. Before I could even finish listing my symptoms she made it clear that she was quite sure that I have I.C. and that a small, one day surgical procedure would be necessary to confirm the diagnosis. I just stared at her bewildered that she was so sure she knew what was going on with me. She gave me information on I.C., suggested I begin following an I.C. friendly diet, and prescribed some medications(including Elmiron) to help start me on a better track. This was when I thought to myself, really? bladder problem? all this time? go figure. She also recommended I start counting how many times I go to the bathroom a day. It really is amazing that all those years.. and I had NO idea I was peeing 80 times a day, sometimes more! You would have thought I would have noticed me and the toilet were better friends than anyone else. But no, I was oblivious. Even moreso, I find it ironic how often I get frustrated with the endless trips to the lavatory NOW that I know how frequent and abnormal it is. When before I didn't even question it, or think twice. Nevertheless, instantly I went home and looked up I.C. It was then I found this site. I related and understood so much with other I.C. patients and found all of the information necessary to deal with I.C. first class. (diet, health, physical, mental,the works) I was so inspired by the site that I signed up and felt proud that I cleverly came up with the name ICKIRSTI. However, since I was not officially diagnosed, I lent no advice, asked no questions, created no profile.. just followed the diet and read what others had to say and share(to the newbies please don't be afraid to ask when you need too, everyone here is just too nice to be upset with your inquistion, and they really really reply too)!! Then about a week before halloween, I went in for the hydrodistention/cystoscopy. It was discovered that I could only hold 250 cc's of urine(1200cc's of course being the avg. norm). Even in a coma-like state at this maximum capacity my body went into full distress, and the bladder would begin to tear and bleed. In addition, the biopsy showed that an unknown allergen is also causing inflammation and distress. I now see the urologist every other month and my urinalysis is seemingly perfect : ) Though I am on many medications, and following the dietary restrictions as faithfully as I am able, I thank God every day that I now have answers, and that people are out there who actually care. I mean, really care. I now want to give back to others as have all of those on this site whom have given me so much advice and support to myself and others, without possibly even knowing it. Seeing the regard for others makes this journey all the more worthwhile, and feeling the support makes tomorrow always seem like a better day. I hope I can spread the love and support that you all have granted to me, and I am terribly proud to be a member here with you all.
    I have found that even though I am in pain 24 hours a day 7 days a week, many things help and relieve this struggle. For me, I have had the best luck with stretching, meditation, meditative like yoga stances and positions as well as natural/vitamin/mineral supplementation adaptable to suit the endless I.C. restriction diet. Perhaps following the diet, hard as it may be, is the best tool of all, paired with the loving support of this group, and the occasional blessing of a compassionate, intuitive, doctor who actually cares. I am sure I will go into much further detail of my endlesss 10 year struggle on a further date but I must move around now. Another helpful tip, break up the tasks according to the strain it puts on your body so as to not over and/or even under exert yourself. If i do too much it hurts. If I do too little it hurts. So, switch it up and around often!
    I wish you all health, wellness, peace, love, unity, and respect for ever and for always. My greatest thanks to everyone here.. Best regards... your friend... K.J.D.
    Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

    Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

    Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

  • #2
    Kirsti...I am so glad that you decided to start posting.
    Sharon

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

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/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.

    Comment


    • #3
      Hi Kirsti,
      Thank you for posting your story. I am so happy you have finally found a doctor to diagnose and help you. I hope the medicines help you feel much better soon. Good luck.
      hugs,
      Janie

      Comment


      • #4
        Wow...that's quite a story! I'm so happy that you finally found a great doctor that diagnosed you and is helping you.

        I, too, didn't give much thought to the fact that I had to use the restroom every 10 minutes! lol...people would joke that I had a "small bladder" and I believed that. What a relief it is to figure out what is causing us the pain and frequency, isn't it?

        Welcome to the board!

        Hugs,
        Kara
        Hugs and Wishes for Pain FREE days!!,
        Kara


        www.loveforearth.net ~reducing plastic waste one bag at a time~

        Facebook: Kara Kaiser
        Twitter: Love4Earth

        Me and my Guccigirl... she helps me through those painful hours!

        Comment


        • #5
          to our boards. Thank you for sharing your IC story with us. I am sure you have found a wealth of info with in these pages. I still learn something new every day about IC.
          'The will of God will never take you where the Grace of God will not protect you.'

          Comment


          • #6
            Thank you all

            thank you all so much for replying... even moreso, actually reading the mini novel written above. I am so sorry that it is so long, and in the future I will try, (try) to keep it shorter! Sure is hard to keep it short though when facing the question.. how did it start for you? haha.. took me all this time to write about it for a reason.. ay! Thank you all so much for having and welcoming me and feel free to ask me anything! I would love to help! (note: this little disclaimer makes it clear that I am NOT intending to give away actual medical advice)!
            Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

            Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

            Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

            Comment


            • #7
              Kristi,

              I'm 20 and I was also dxd in October of 06!!! I live in bergen county, nj. It stinks that more young people are joining the IC Club...but good that they know it's not all in their head which most dr's tell us. If you ever need to talk with someone in the same state, I'm here! Good luck with your meds.

              (((huggs)))

              Rachel
              ***Rachel***

              Dance like no one is watching
              Love like you've never been hurt
              Live today like it's your last

              Dxd with IC in June '06

              Comment


              • #8
                yay!

                Thank you so much! That is crazy, we were both diagnosed in the same month! Yay for us finally knowing what is going on with our body! I Was just wondering who would be from the same state as me! Please indeed feel free to contact me anytime as well! I actually live down south, in Bridgeton, but I know where Bergen County is because I went to school at Montclair State University for four years! Thank you so much for writing to me and hearing my story. I wish I could stay on and talk to everyone, but I have a Doctor's appointment! My app. is in an hour, but usually I have to wait at least 3 hours to even see the doctor! I surely will return the moment I am finally out of there! Best of luck, health, wellness, and the warmest of regards to you!!
                Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                Comment


                • #9
                  to the site, sorry you have IC at your age. I was dx at 32, now I'm 47, it took the doctors 5 years (had 3 doctors-- and even then they told me that I was too young to have this disease!!) The only treatment that they offered me at the time was DMSO which they installed in my bladder weekly for 6 weeks which helped for awhile. No one told me about the diet, infact; didn't know about it till I found this wonderful site in 2003 and I asked my uro who was new to me at the time and we talked about it and he said it would help-by that time, I was also on Elmiron. Good luck, sounds like you are on your way.

                  Comment


                  • #10
                    Some of your symptoms like not being able to walk are alot similar to what was going on with me. It just seems strange that the bladder is connected so much to walking?? Also thinking back to when i would go on trips and I would always plot out where to bathrooms were (don't think avg people do that)??
                    past meds:
                    elmiron 100mg 3 x a day
                    cystoprotek 6 a day
                    elavil 10 mg
                    Femcon fe
                    non-shellfish vegetarian glucosamine HCL
                    750mg once a day

                    Comment


                    • #11
                      really?

                      Again thank you everyone! You are all the best! About the last reply, what have people told you was causing such pain? So much that sometimes you can't walk? They tell me it is the fibromyalgia, but sometimes I really wonder. I also don't have irregularities with various mechanism's supposedly responsible for the fibromyalgia (Like irregularities in the T3 helper cells, or negative-anti thyroid receptors). So that makes me wonder even more cuz the only thing I fit for the fibro category, is the widespread trigger point sensitivity and possibly the excess Substance P (responsible for sending pain signals to the body). HMPH.. so then do my fellow I.C. friends find themselves in so much pain that they can't even walk? Cause, exactly, putting the bladder, and such a symptom together, is indeed, seemingly out of place?? Or am I just mistaken?
                      Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

                      Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

                      Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

                      Comment


                      • #12
                        Great story Thanks for sharing.
                        hugs Sandra
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                        My Photobucket Link:
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                        Comment


                        • #13
                          After my Hydro I could not walk without pain so i know it was bladder related. It took awhile to heal.
                          past meds:
                          elmiron 100mg 3 x a day
                          cystoprotek 6 a day
                          elavil 10 mg
                          Femcon fe
                          non-shellfish vegetarian glucosamine HCL
                          750mg once a day

                          Comment

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