Recently I was in a Interstitial Cystitis (IC) flare* again. Number three of the year. They have been happening about every three weeks. Until now I have been able to get them under control within a few days. This one was determined to take over my body and stay.
Since I was in horrible pain all the time I called my IC doctor for a bladder instillation. The soonest appointment available was almost a week away. In the condition I was in I knew I would not be able to work. So I needed something quickly. I called the office of the doctor that diagnosed me. His office is over an hour away but I was desperate. When I asked the person that answered the phone if he had a certain cocktail for the instillation, you would have thought I was speaking another language by the way she reacted. Well, I guess I am for those who do not have IC. A cocktail is the ingredients or medications that they insert directly into the bladder via catheter. They said it would take a week or so to work me in as a new patient. It has been four years since I have seen him.
Out of urgency (pun intended) I called the Urology Center that I used to go to before my Urologist left town to start his own practice in another state. Oh how I wish he was still there. He understood the pain of IC and he was a very good at encouraging me!
When I called and stated that I needed a bladder instillation the receptionist said do you have IC? She at least seemed to understand a little bit about what I have. The more I talked to her the more she seemed to know. I had tears in my eyes as I talked to her.
When you have chronic pain and illnesses it is life changing. But when you have a chronic illness that no one has ever heard of it brings with it an entirely different set of challenges of its’ own. So when someone understands it can be emotionally overwhelming especially when you are in a lot of pain and a flare.
I made an appointment for the next morning. Mornings are difficult for me and I try not to do make any appointments that end in “am.” but I really wanted relief. The office is over an hour away from my house so I needed a driver. My husband was working so I called my wonderful sister. She eagerly agreed to make the trip in hopes of relief for her baby sister.
We left town about 9:15 and headed through a small town then onto the interstate. I sat up front but reclined my seat as much as possible to take some of the pressure off my bladder. As we were about ten miles out from our destination the sky was gray and the clouds were very dark and heavy on the bottom. There was sunlight shining behind the clouds onto the barren, gray, winter trees.
I told my sister that it looked very “Wizard of Oz-like.” She agree and told me to watch out for any clouds that formed a funnel. As she continued to drive the bottom fell out and sheets and sheets of rain began to pound the car. I sat up from my inclined position to be an extra set of eyes on the road for our safety.
As we exited off towards our destination we saw at least a dozen cars pulled off of the highway on either side. I have never seen that many cars pulled off the road because of rain. Shortly after, just in time for us to depart from the car to the five-story brick building that would hopefully bring me relief, the rain stopped.
We were thankful that the rain stopped but there was still a mighty wind that chilled us as we walked in. The kind of wind that later in the day we would see took the roof off of a building we rode by and the kind that knocks over power lines, reroutes traffic and ends up on the evening news…Yeah that kinda wind.
We both had to use the first restroom we came to in the Urology Center. I was in pain because I needed to go so bad. Then we made our way to the fifth floor and I checked in. A few seconds later a friendly nurse took me to ask some questions and check how full my bladder was with a wand.
When the second nurse came in to ask me questions before she sent to me to another part of the Center for the instillation, I told her I needed to go to the restroom again.
She sent me down the hall for the instillation. I found my sister in the first waiting room and she went with me to the second waiting room in the Treatment Center. They told me it would be a long wait. I had to go to the restroom one more time before I went back for the instillation since I knew after I had it I would need to hold it as long as I can to get the most benefit.
The nurse that gave it to me was great. She instructed me on how to do them at home and actually seemed to care about helping me. I hugged her before I left and thanked her for being so nice!
Then my sister and I made our way to a nice little deli that my husband and I used to always go to when we had to make this trip. It is something to look forward to on a trip that can be quite uncomfortable for me. And when I remembered that they serve “FREE” ice cream it made me feel like a kid again.
We enjoyed our meal and headed on our way. We both agreed that it was a shame to go to a larger city and not do any shopping, but I certainly did not feel like it and was ready to get home. I lay in the back seat most of the way home and rested my weary body. When I got home I tried to void but was unable to until about seven hours after my procedure.
That evening was hard for me. My stomach/bladder/pelvic are were swollen and I had an extreme amount of pressure and pain. It was difficult to even find a comfortable position to rest in. The next day I felt better. I still had bladder pain but not as much and I didn’t have any lower back pain. I was able to go to work for a few hours and I made it to church that Sunday morning. I felt better for a few days…
*WHAT IS AN IC FLARE?
IC flares are not the same for everyone. Nearly 750 people responded to a 2009 ICA Quick Poll asking them to define an IC flare. Definitions included:
- Period of extreme pain with increased urinary frequency/urgency across several days or weeks (19%).
- Sudden increased intensity of symptoms (12%).
- Dramatic increase in IC symptoms across several hours (7%).
- Worsening of symptoms from baseline (5%).
- Subtle worsening of symptoms (4%).
- Over half (52%) of the IC patients surveyed felt that all of the above definitions defined an IC flare.
– See more at: http://www.ichelp.org/about-ic/symptoms-of-ic/icflares/#sthash.pnFhDqqZ.dpuf