This is my story...

Every sufferer with Interstitial Cystitis has a story to tell, one that is unique and shares a personal struggle, one that makes them stronger. This is my story... 

In August of 2007, I was just your average 22 year old college student working full-time at a grocery trying to further my independence. I had never really had any serious health problems other than when I was younger when I was diagnosed with stomach issues and fibromyalgia, but I had made an effort as I grew older not to let them control my life.

Just before I got sick, I was like most 22 year olds; spontaneous, active, hard-working and ambitious; ready to take on the world. I was a sister, a middle child, a daughter, a writer, a friend and a young woman with her whole life ahead of her. But little did I know things would all suddenly change in that first week in August. I came down with what I thought was a pesky UTI, but little did I know that the rest of my life would come to know a disease known Interstitial Cystitis. I went from being healthy to being pretty much bedridden from debilitating pain. For 3 months I would make countless trips, 15 actually between the Urgent Care and ER due to what I thought was a resistant UTI until I was finally diagnosed. I didn't know whether I was going to make it through the next day to be honest.

 When I was first diagnosed with Interstitial Cystitis or IC, I thought it was the worst thing that could have ever happened to me, especially at the young age of 22. I don’t think you ever picture yourself standing in a Urologist office getting ready to undergo procedures you never thought existed. In the beginning, I found myself scared and very much alone in my struggle even before I knew what I was up against. I still remember the day I first heard the term Interstitial Cystitis and that was the day I was diagnosed.  Back then I could barely pronounce the term, but today it has become a regular part of my vocabulary.  And to be honest, I won’t ever forget November 14, 2007 because it changed my life in more ways than one. With a hydrodistension, it was confirmed and written out finally...

Shortly after diagnosis,3 months of treatment to be exact, the urology team treating me suggested that maybe I should have my bladder removed because I wasn't responding to treatment. I remember being completely devastated and wanting to scream at someone because I couldn't understand why this was happening to me. Even then I was still going to the ER due to pain, sometimes my blood pressure would run as high as 210/100. Those were some hard times, not having a specialist and feeling like the pain was going to take over my body.

But thank goodness I decided to get another opinion because it was then that I found a great Urogyn that treated me like a person and not just a file. I may have gone through some of the hardest times in the past 5 years, enduring daily pain, tears and feeling worthless, but I have become stronger.

I have learned to not let it define who I am. Of course it has changed my life in ways that are negative because I can no longer have a moment without pain, nor remember what it feels like not to hurt this way, but this disease has helped me not take things for granted.  After 5 long years of dealing with this disease and Lupus, 14 surgeries, a long list of medications and procedures I have truly learned what it takes to be a strong person. I am not saying I am happy to have been afflicted with this disease, but you could say that it has changed my outlook on life. 

Aside from the medical aspect of living with a chronic condition, you often find yourself isolated because it’s a hard condition for many to understand. It isn't a condition that people can "see" and explaining it sometimes just isn't enough. But a flicker of hope came when I learned I was not alone in dealing with this awful disease as I found others through the internet just like me. I think that is when I realized that I was going to be able to handle the long journey ahead of me because I had the strength of others on each side, holding me up through the struggle.

I now understand that anything can happen at any moment in life, so it is important to cherish those things that bring a smile to your face.  I no longer embrace the material things in life, but embrace the small things that mean the most to me. I know that there are many hard days ahead of me, but I pray in the near future that a cure finds each and every one of us suffering from this disease. I understand now that at this moment that healing from this disease isn't going to come right away, but learning to heal from within is the first step is learning to accept this life that God has given me.

And I believe that raising awareness for this disease is key to getting us to that next step and I think it’s important to recognize that sometimes the words of others are all we need to give us a little hope so that we can keep our feet on the ground… I hope that I can inspire others to be strong and fight against this disease as much as I have.

I will leave you with a verse that I often remind myself of when I've had a bad day...

Psalms 46:5 "God is in the midst of her; she shall not be moved; God will help her when morning dawns."

I created a few videos awhile back with the help of other IC'ers, feel free to watch :)

Also if you have questions about any treatments i've tried leave a comment or email me, i'd be more than happy to share my experience.

ICHopeOK@yahoo.com