Tweet
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.
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.
Kirsti...I am so glad that you decided to start posting. 
Janie
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)!
Comment