I don’t know why I am doing this. Creating a blog. But I need to make some changes in my life and maybe I can hold myself accountable. But if you have found yourself here… how the heck did you get here? Well, you might be here because you are someone that knows me and cares about me and wants to check in on how I am doing regularly. Or you might be someone who knows IC (personally or through a loved one) and you’re not a fan of it or are trying to understand it. Or maybe you know someone with migraines or another chronic illness.
My name is Rachel Bob and I have had migraines since I was 18 and I have Interstitial Cystitis. I was diagnosed with IC in early 2015. And nothing has been the same since, but actually even before that life wasn’t the same. But I am getting ahead of myself.
What is Interstitial Cystitis?
Interstitial Cystitis or IC (also referred to as Painful Bladder Syndrome…a very poetic name) is a chronic condition/disease of the bladder.
www.ichelp.org describes IC as a condition that consists of recurring pelvic pain, pressure or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.
It’s all of that and so much more. It’s a comprehensive disease that impacts the body by radiating outward from the bladder. Every person who has IC experiences it in their own way and there is no one specific way to get IC. From my research, IC seems to strike for a variety of reasons and none of them seem interrelated. Although some people with IC, had many bladder infections or urinary tract issues prior so their IC might make more sense, if that’s even possible. But my IC hit seemingly out of nowhere.
My IC Story
To tell my story I have to go back to when I believe it all began.
It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had chronic bronchitis my whole life. Even on my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years. It was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, my dog died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life. And it got worse. The ‘relationship’ I was in which wasn’t that great to begin with quickly deteriorated because he couldn’t understand why I was sad and grieving all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA. No matter what happens ….I am determined to succeed. But it doesn’t end there.
The new year of 2015 came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them. So in that sense…I was one of the “lucky” ones because I was diagnosed early.
Here’s a picture of me pre-IC. When I first got accepted to Gallaudet… I was so excited and happy. So naive to think that that feeling could last.
|[image description: Me with long red hair, standing with a big smile, behind my car which as a new window sticker on it that says Gallaudet University from when I was first accepted into Gallaudet]|