"How come your chicken looks different than mine?"

I decided to take a break from writing about my history with IC and say that I have gotten some very positive responses from my friends and family about this blog. My husband, Tom, and I just returned from a trip to Colorado for a wedding of a long-time friend. Travelling is always difficult due to the numerous bottles of medication, homepathics and herbal supplements I am taking. Food is also always an issue. There are so many things that I am not able to eat anymore because they can exacerbate the symptoms of IC. Thankfully, my friend was gracious enough to special order a meal for me at her wedding so I could eat comfortably. This however yielded lots of questions from the people around me, some of whom I have known since grade school. "How come your chicken looks so much different than mine?' "How come you are eating that?" I had not anticipated having to talk about my battle with interstitial cystitis. "Hey, my life has changed dramatically in the last 2 years. Things are a lot different since the last time you saw me. I now have a chronic illness that affects the bladder and causes constant pain. I am lucky to be able to come here. I spend a lot of money on doctor bills and have a hard time working full time. Congratulations on your new promotion!" I told an abbreviated version of the story to old friends. They were surprised by the news and commented that I "hid" the disease well. For me, it has never been about hiding the fact that I have interstitial cystitis from people. Although it's part of my life, it's still not me. I have realized through all of this that I have an overwhelming amount of perserverence. There's a drive within me that won't, maybe can't, stop striving to live life. I love life and want to experience all that it has to offer! I had not anticipated on IC being part of that plan, but that was MY plan and I believe in something BIGGER. I guess the reason that I don't really tell people that I have interstitial cystitis (until this blog) is because I am too busy trying to kick it's butt. My friend referred to me as "strong." Maybe, but I don't really know. "Strong" is the belief that I have that circumstances can change and be changed.

March 2006 "Don't ever let anyone stick a razor blade in your bladder!"

I returned to the urologist for an appointment following the trial of Detrol LA. After explaining to him the difficulty I had with the medication, the doctor decided that it was necessary to perform a cystoscopy on the spot. A small camera was inserted into the urethra and slowly advanced into the bladder. This allows the doctor to look at areas of the bladder and urethra that usually do not show up well on X-rays. I asked the doctor if this procedure was painful and he replied, "I don't think so. I've never really had anyone say anything about it." As the doctor began to insert the camera, I was shocked at how painful the procedure was. I informed the doctor, "The next time someone asks you if this is painful the correct answer is 'Yes!' Infact, it feels like you're inserting a razor blade!" I could feel the "cutting" sensation for several hours after the procedure. Following the cystoscopy, the doctor told me that I did not have any ulcers in the bladder and that my bladder look "normal." Several months later I learned that Hunner's ulcers are only present in 7-14% of interstitial cystitis cases. This urologist never considered the fact that I could have interstitial cystitis without ulcers. I was not yet knowledgeable about this condiion so was unable to make the suggestion to the doctor myself. Again I left the urologist with samples and a prescription, this time for a drug called Prosed. Another drug that turns your urine colors, can stain your clothes and your eyeballs...

Febuary 2006 (Detrol LA trial)

The pain and pressure in my bladder continued. It seemed like no matter what I tried, I could not get myself to feel any better. By now, I was waking up 6 times or more a night to go to the bathroom. I had a frequent need to use the bathroom during the day as well, sometimes as often as every 20 minutes. I began to find that even walking down the stairs of my 3rd floor apartment difficult. By the time I had reached the bottom, I felt the urge to go the bathroom again. I was stricken with fear and anxiety every time I had to leave my house. Would I be able to tolerate the pain? Where would I go to the bathroom? What was happening to me? How would I be able to work? Sleep deprived and depressed, I called my GYN again. Fearing that I may be acquiring a "neurogenic bladder," she referred me to a urologist. My first meeting with this particular urologist was less than desireable. Unsure of what my actual diagnosis was he remarked, "We can always put in a sacral nerve stimulator to calm down the nerves." Thanks. He COULD NOT give me a diagnosis, but he COULD recommend surgery. Nevermind the fact that surgery is what put me in this situation in the first place! Opting for more conservative methods I asked, "What are my other options?" The urologist prescribed Detrol LA for a spastic bladder and stated, "Sometimes this kind of thing just goes away." The urologist was kind enough to give me a four week sample pack and a presciption. "Try this for six weeks and come back," He said. After three weeks of taking the medication, I knew it wasn't working. Not only did I still have an almost unbearable urge to urinate, but the medication so severely relaxed the bladder that I began to have severe urinary retention. I stopped the medication and chose to wait the remaining three miserable weeks for my follow up appointment. My efforts were devoted to trying to tolerate this bladder problem and hold onto my life.

December 2005-January 2006 (Pyridium and Antihistimine Trial)

I have been dealing with IC since December, 2005-the 12th of Decemeber to be exact. Almost immediately following a laporoscopy to remove a cyst, I had difficulty urinating. I called my GYN within a few days of having the surgery. I remember her telling me, "If it doesn't go away in 3 days, call me." Ofcourse, it didn't go away. She called me in a prescription for Pyridium, a drug that turns your urine red, can stain your clothes AND your eyeballs. After two days of Pyridium, I was forced to stop due to severe migraines. Never having a migraine in my life, I called my pharmacy. The pharmacist told me that was a rare, but possible side effect. Lucky me. I continued to have increased pain, pressure and difficulty urinating. I tolerated the condition as best I could until I returned to my GYN for a follow-up visit in January. I explained that I was still not feeling better and that this condition was really beginning to take it's toll on me. She suggested we try an antihistimine. She said she had tried this particular medication on another patient. To her pleasant suprise, that patient was now "urinating like a race horse." Hoping to heck to also be "urinating like a race horse," I filled the perscription. This episode of medication was also short lived. I didn't feel any better. I also was unsafe behind the wheel of my car due to extreme drowsiness. As a home health occupational therapist, it was important that I be able to safety drive. Confused by the situation, I didn't know what else to do. I continued to tolerate the condition, wondering if my life would ever be the same again.