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Sunday, November 11, 2012


On September 19th I had a cystoscopy with hydrodistention or a bladder stretch. For this procedure I was given general anesthesia and my bladder was filled with water to an amount that would be painful if I was awake. This procedure is used for diagnosis, treatment guidance and sometimes provides relief of symptoms. At first I experienced an increase of my symptoms then I was extremely nauseated for about 3 weeks and then I started feeling better. My back pain was mostly gone, my stomach was not swollen or hurting anymore and I was starting to get some of my strength back, I was feeling good! 

I thought I was in a remission of sorts. Then out of no where this week, I was in a flare for the first time in months.  My symptoms started on Monday, but I was in denial.  I was just hoping I had the flu or something like that, anything but a flare!  I wanted to capture my thoughts and feelings while I was in the flare, so that you could understand more how it feels for me and other Interstitial Cystitis (IC) patients.

Today is Tuesday and I have given in to the fact that I am in a flare.  A flare has been described as a sudden increased intensity of IC symptoms. My symptoms right now are unbearable lower back pain and achy all over. These symptoms are in addition to my usual frequency, IBS, fibromyalgia,vuvodynia,low energy and feeling like I have an UTI. I feel like I have a fever, but I don’t and I do not have any strength at all. I don’t feel like doing anything today, except crawling back into bed and going back to sleep, but I am determined to continue to work every day, so I have been working from home. To give you an idea of how severe my back pain is, I want to describe it. It feels like I have knives sticking in my back causing a stabbing pain. I accidentally scratched the part of my back that hurts so much and it brought tears to my eyes. The smallest amount of pressure is intolerable. I can't take the pain any longer so I call the doctor’s office, hoping that I can get a bladder instillation (medicine instilled directly into the bladder via catheter) and was told he could see me tomorrow. I am so disappointed right now, so I just cry. I do not feel like waiting until tomorrow for relief, but I guess I will take some more pain medication and keep trying to feel like a normal person. Right now I feel like less of a person because I feel like IC is winning the battle today. I feel let down and frustrated that I am unable to do anything to help myself at this point. This is a very familiar feeling and it just gets to be too much some days.  I always try to be a positive person, but I think everyone should know just how frustrating the life of an IC patient can be at times.  One minute you feel fine and the next minute your body won’t let you do the things you need to do and your spirit is broken. 

 I force myself to go into the office. I was so nauseated on the way , I could barely drive and I was fighting the drowsiness of the pain medication as well.. Once I got there I still felt miserable, but I was glad I went in so that I could enjoy the company of other people and not focus on my agony. I was almost too weak to talk or walk, but some how make it through the day.  I went home at 5:00 which is unusual for me; I tend to work late most days. I came home and went to my sanctuary (my bath tub for those who have not read my previous blogs; yet!). I went to bed at 8:00, but because of the pain medication, I kept waking up for several hours during the night. It was a very rough night.

My doctor's appointment is today (Wednesday) so I go in for an instillation. I ask the doctor to refill my pain medication and he did, but not without a warning about getting hooked on pain pills. I fell like I am being kicked while I am down. I feel so broken.  I want so badly to continue to be able to work.  However; it seems like such a struggle at times. Not many, but some days, I hurt so bad that I need pain medication in order to just be able to work.  I feel betrayed by my body. I want to work, but how much more of this can I take?

By Friday, I was feeling much better. I thought back on this week and wondered why I went through such a difficult time. This past Sunday, I had told my brother that maybe I need just a little pain to keep me closer to God.  I also think it helps me relate and have compassion for others who are suffering.  If that is God’s plan for me, I pray that he will keep me strong enough to help others as much as possible. I know that many of you feel broken, but I hope that you will find the strength that you need to help you in your daily struggles and hopefully I will be a source of encouragement for you.
Philippians 4:13  I can do all things through him who strengthens me.

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