September is IC awareness month. A lot of my IC "sisters" have been posting things on their Facebook walls such as "fun facts about IC" (although in my opinion there is NOTHING fun about IC), videos about IC, and/or links to pages that give you tons of information about what someone with IC lives with every day. And I think it's really great that everyone is trying to spread the word and to get more people informed about this awful disease. Which is what has led me to finally sit down and write out my IC story for the world to read.
First off I want to tell you a little about what Interstitial Cystitis is. Interstitial cystitis (in-ter-stish-uhl sĭ-stī'tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). It may also be referred to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain. To read more about what IC is click here. http://www.ichelp.org/page.aspx?pid=329
In August 2007 I thought I had a general UTI that would go away with antibiotics, no problems there. So the next day I went to the doctor to get those magic pills. I started feeling better after a few days, which is expected. After I finished the course of antibiotics I felt back to normal. But a few weeks later, I thought, oh no, I've got another one! So back to the doctor I went. I left there with yet another prescription for some antibiotics. This time the pills didn't seem to clear up what I thought was a UTI. So the doctor gave me a different type of antibiotics for the problem. Unfortunately those didn't help either. After a few months of taking antibiotics and being seen by different doctors I was getting frustrated. No one seemed to know what was wrong with me and why the antibiotics weren't getting rid of the problem. So I seeked out doctor after doctor trying to get answers. At the time I was a freshman in college. But having this uncomfortable problem and not knowing what the heck was wrong with me, made it really hard to focus on school and to sit through 2 hour classes. I ended up dropping out of school. And continued seeking medical help and trying to find answers. During this time I was also working full time as a Medical Records Clerk at a hospital in California. I loved my job there. But I spent many days being uncomfortable and in pain from whatever was eating away at my insides. I missed a lot of days of work because I had doctor's appointments to go to. I wasn't giving up. I wanted answers to why my body felt this way.
In April 2008 I met with a new doctor (about the 20th doctor I had seen), with hopes that he would be able to cure me! I told him my symptoms and what I had been experiencing for the past 8 months. He told me that he thought I might have Interstitial Cystitis. I had NO idea what that was...but it didn't sound good. He said that I would need to get a Cystoscopy which is a test (under anesthesia) that allows your doctor to look at the inside of the bladder and the urethra by stretching the bladder with fluid. They can then determine if the bladder lining is damaged with ulcers and/or hemorrhaging, which would mean you have Interstitial Cystitis. As scary as that sounded I went ahead and scheduled the surgery. The whole procedure took only a few hours and I was able to go home that same day. A week later I would find out the results from my doctor.
One week later I went to my follow-up appointment with my doctor. He informed me that I indeed did have Interstitial Cystitis and this is what I have had all along. When you have IC there is no infection but the symptoms can feel similiar. So this is why I had been treated all along with antibiotics that didn't work for me. At that time I felt SO relieved that I finally had answers. And I could finally begin the right treatment for my IC, which for me means 12 pills a day (none of which are antibiotics).
The thing about IC is that there is no cure for it. Once you get it, you are stuck for life with it. For me some days are great! No pain. Other days are horrible and make life hard to cope with, which leads me to the hardest part of my story.
Since I have had IC, life has slowly gone down hill. That job I loved at the hospital I got laid off from (which had nothing to do with me having IC, but more to do with the fact that the hospital was doing budgets and since I was newer, I was the first to go). A month later I found a job working as an Engineering Assistant at a manufacturing company. I loved this job too. And looking back now, IC thankfully didn't give me too many problems while I worked there. I was on my feet a lot and didn't have to sit for long periods of time which would have definitely been painful. But after working there for 8 months I got laid-off. Another job lost.
After my second time being let go, I decided to take some time off and enjoy my unemployment that I received every week. That is when my true passion for photography began to show. I would go for drives down to different beaches and take photos because even on my bad days that is what kept me happy. After about a year of not working my boyfriend at the time decided that he didn't want me around anymore, so he evicted me from his house. A week later I was living in Illinois with my parents and son. I still received unemployment weekly even while living in a different state, so I wasn't in any hurry to find a job. I wanted to get used to living in a whole new place and just enjoy it for awhile before I would go back to work.
But days turned into weeks and weeks turned into months. And before I knew it my unemployment benefits came to an end. I had received the maximum of 99 weeks I was allowed. But yet I was still unemployed. And being unemployed for that long had caused me to have serious fears about going back to work. I was afraid of working in pain. All those fears and anxiety had caused me to fall into a deep depression where I felt like a loser for not working. For not being able to take care of my son. I felt that IC had taken SO much away from my life. I would cry for hours on end and stay locked up in my room for as long as I could before my son would come home from school and need his mommy. I honestly felt like God was punishing me for bad choices I had made earlier in my life. Why did I have to live with such an awful disease? And even on the days where I had no pain at all, I would still worry about the next time I would be in pain again. It was hard to make plans because I never knew how I would feel on that day. EVERY aspect of my life was being affected by this disease and I had no control over it. It affects your relationships, your work, your eating habits, your self-worth....EVERYTHING. About a month ago I found an office job that I was willing to try out. After not working for 2 1/2 years, I was extremely scared to enter the work force again. It was an office position that required me to sit ALL day (8 hours) and do office tasks. By the middle of the day, I was in a lot of pain and very uncomfortable. I texted Rob and told him that I didn't think I could do that job. I let him know that I was going to quit (yes, after only one day of working there). I couldn't handle the pain, no money was worth that to me. So I did indeed quit. I felt so terrible and so guilty that I wasn't able to do the job. I felt my spirit just break. I felt that I had not only let myself down but everyone else who was counting on me. Rob was angry with me for giving up so easily. And I was very angry with myself. But only the ones with IC can truly understand the pain of it. And how miserable it can be at times. IC was definitely controlling my life.
But today, as I was walking my dog, I had an epiphany (So cliche, I know). But I came to the realization that I have let IC lead and ruin my life for the past 3 years. It has held me prisoner in my own body. It has kept me from being the mom I should be to my son. It has kept me from being the girlfriend Rob deserves. It has kept me from succeeding in my life and from becoming whom I really want to be. And from this day on I have decided that I HAVE INTERSTITIAL CYSTITIS BUT INTERSTITIAL CYSTITIS NO LONGER HAS ME. I want to live my life to the fullest. To make the best of every day I am given. I don't want to live in fear anymore of what tomorrow will bring. And I most definitely don't want to let the way I feel affect me anymore!
The past 3 years have been the darkest time in my life. But I am so thankful for all of the amazing women I have met and connected with who share the same illness I have. They have been so wonderful to me with their daily support and encouragement. I would be so lost without them.
And I am beyond thankful for Rob who has been my rock and who has stood by me and has not given up on me even when it would have been easier for him to just walk away.
This is a photo I made so that it can be apart of an IC awareness video my friend is making. She is then going to send the video to a news channel so that we can get more people informed of this disease and possibly find a cure!
