Friday, July 4, 2008

Bladder instillations, Roller Coaster Rides and Bleep Blips


I know I've taken a LONG time to update this...mainly because not much has changed. I recently finished a series of 12 bladder instillations. Sadly, I received little to no significant benefits from them. Some people do really well with the instillations. I only received very short term relief, one to two days. Then, all the symptoms would return again. It is a bit discouraging. I just keep praying (and PRAYING and PRAYING and PRAYING) that there would be something that would help me.

My husband and I were recently watching a show about the physiological effects of thrill rides such as roller coasters. Thinking I might like to take up the pastime of thrill-rider enthusiast, I decided to brave the crowds, long lines and theme-park prepared foods with my husband and go to Six Flags Great America last week. I know, not really the best choice of activities for people with IC. In fact, this type of activity can be impossible for many people. I prepared myself for the adventure by telling myself I was going to take my time and use the bathroom before extremely long line. I knew where all the restrooms were located and comforted myself by knowing I could go directly to it when I got off the ride. I also had a bladder instillation the day before which help to slightly decrease my frequency. I was set and ready to go!

We started off the day with a warm-up rollercoaster, a "family" rollercoaster as it is described. No problem there. My bladder felt fine. My stomach felt fine. Off to ride number two...The Orbit. The description for this ride said, "Come get your world turned upside-down on The Orbit, a flat, spinning ride that rises up just to flip you over." Sounds intriguing, doesn't it? My 6 foot four inch husband and I were crammed into a small cage-like device, he in the back, and me, with my knees bent nearly to my neck, in the front. "Can't you move your hips in a little more? I can't fit my legs in this thing." He asked. Wiggling and wiggling around until we were almost stuck, we somehow managed to jam both of ourselves into this square box of a ride. The ride began to spin...and Spin...and SPIN...endlessly until I began to feel both bored and very sick! I couldn't get off this dumb ride fast enough. Weak-kneed and dizzy, I manage to dislodge myself from the ride saying, "I think I am gonna throw up! I think I gonna throw up!" Searching frantically for a chair in some form, I took a seat on the curb. For the next hour and half, I proceeded to be both dizzy and nauseous every time I moved or turned my head. At one point, I willing stumbled my way to the first aid station and asked if they had a cot I could rest on for a while. My husband later told me my eyes were dilated. Sadly, we decided we were going to have to leave the park, not because of my bladder, but because of the stupid spinning ride that caused some strange episode of vertigo.

One our way out the park my husband said, "I want to get a funnel cake before we go. I feel like if I at least get a funnel cake, our trip won't be a total waste." Unable to eat the funnel cake myself, I wondered into a candy shop to see if there might be something to make my theme park experience worth it. I spotted my favorite candies, Bleep Blips (a cross between Smartees, Sweattarts and shaped like a flying saucer ) and in small quantities I can actually eat them. Not wanting to irritate my bladder, I decided I would purchase just two Bleep Blips. My husband suggested that I get a big scoop of the candies as he would share them with me. Vowing to myself that I would only eat two, I bought a bag full.

I walked out of the store and popped the first Bleep Blip into my mouth as we headed toward the exit. Within minutes of savoring my favorite candy, my head began to clear, my dizziness subsided and my nausea vanished. These were miracle Bleep Blips! Suddenly, I was feeling...FINE I was feeling so good in fact, that we were able to ride some of the big rollercoasters and remain at the park until closing time. Anytime I was feeling sick to my stomach, I just popped a Bleep Blip and away we went (I actually ate about 10 of them). We now have plans to go back later in the summer to ride the rest of the rollercoasters that I missed, and of course, armed with a pocket full of Bleep Blips to tame my ails.

3 comments:

Unknown said...

Jenny,
I am so sorry to hear that you still suffer so much. Have you already tried any oral medication to lower the pain?
I read something very interesting on the website of the pelvic pain society: "When a person has chronic, long-lasting pain, the spinal cord gate maybe damaged. This may cause the gate to remain open even after the injured tissue is healing.When this happens, the pain remains in spite of treating the original cause."
http://www.pelvicpain.org/pdf/Patients/
CPP_Pt_Ed_Booklet.pdf

When I read that, I finally accepted to do what my doctor said, and took an oral medication. I was very nervous about it, because I tried two different kind of tricyclic antidepressessant last fall, and could not tolerate them, even at very low dose. Moreover, I hate the idea that my body has to endure another medication. But I finally decided to take a new oral medication: pregabalin/Lyrica, which is an anticonvulsant, which also kills the pain. It should help my body to stop the pain circle. I must say that I tolerate this one quite well and it helps some. I must still wait to have the full benefit.At least, it gives me hope.

Hope this gives you new ideas. And the pelvic pain society website is quite interesting.

By the way, I am sorry if I do English mistakes but English is not my mother tongue.I am from Switzerland.

Jenny Lelwica Buttaccio said...

I too got to the point where I was willing to try ANYTHING. I have actually tried loads and loads of oral medication and with little to no benefit. With some of the medications, the side effects were so bad, that I actually chose the bladder pain over them! Thank you for your suggestion of the Pelvic Pain Society. I will spend sometime reading their information. Although I have days when I get down, I do believe there will be better days ahead eventually. Thank you for your reply. Jenny

By the way, your English is perfect.

ReneeNAE said...

Wow, I never heard of Bleep Blips, I probably should check out those miracle candies. I miss you, and I'm glad to be reading your blog, this will keep you in my mind and thus in my prayers. How is Tom? You guys are so cute, are you still living in Chicago? Well I hope to hear from you soon.