Interstitial Cystitis...

When I was a preteen I started having pelvic pain. Not sure why. I was too embarrassed to talk about it with anyone. So I kept the pain to myself saying it was a stomach ache.

All I knew as a preteen was it hurt like razerblades when I used the restroom. Like a UTI. Nothing helped the pain and I didn't have an infection....this was the start.

I had to tell my friends I couldn't hang out, or I didn't want to. My attitude was BAD. I felt angry, all of the time. I was never patient unless I really had to be, which was hard still. I was miserable and in pain. I thought of suicide, alot. What kind of life was this? This wasn't living. I was just alive and here, but not serving any purpose except causing others to be upset by my frustration and my inconveniences.

Suicide. I started having strong feelings of suicide after a few years of doctors telling me nothing was wrong. So..I was around 14 or 15. I mean, if nothing was wrong and I felt in so much pain...what was I supposed to do? I really thought maybe I am crazy. I remember looking in the bathroom mirror asking myself, "Am I crazy?" "If I am, what should I do? Should I end my life? Everyone including my family made me feel like I was stupid and not with it. That I had no valid excuses for anything because I was the one who always complained, always was sick and I had nothing but it is all mental to tell them.

Suicidal ideas got worse when I started dreaming in pain. So not even in my dreams could I get away from the pain I was in. I used to have dreams of sitting in the bathroom in pain, feeling what I now know was my bladder spasming and inflamed. I used to wake up middle of the night to take a bath and cross my fingers maybe it will help. It usually didn't. I had dreams of my family leaving me to die somewhere while I was yelling for them to help me and screaming, " I'm not crazy!" I used to wake up shaking and my heart racing.

Popular comments I got.

"We can't find anything wrong with you."

"Try taking more omega 3s and eat more almonds"

"Eat less gluten"

"It won't last forever"

"Take some advil or tylenol"

"Stop consuming sugar"

"Exercise more often"

"Stop thinking about it"

"Stop talking about it"

"Drink cranberry juice" ( this one is extremely bad for people with IC )

"you don't have an infection, so it must not be that bad"

"Depression can make you hurt" ( yes but not this case)

So many more I could say... but let's just say most of them just made me feel like a shitty person, friend...family member.

In junior high, during 8th grade gossip went around i was purposely skipping school. I remember a boy flat out yelled at me asking when I was going to skip school again. Everyone heard him. I first felt embarrassed, but then my anger boiled. I walked straight up to him and screamed in his face that, "I'm fucking sick you piece of shit! If you know the fucking cure then let me fucking know!" No one talked like that with me again. And amazingly the teacher just went back to getting ready to teach and the boy actually apologized later in the year. I still thought he was a piece of shit, but accepted the apology.

Going on mid teens im in high-school. Towards the worst of my disease I missed so much school my sophomore year i had to do 8 Saturday schools. Because I couldn't figure out what was wrong with me, I had no valid doctor note to excuse me from missing school. 8 hours, 8 Saturday schools, and they wouldn't let us put our heads down or even put our elbows on the table. I remember feeling extremely sick and in pain at a few of them. More than usual. It was awful.

My English teacher who was known to be mean (putting it in kind words) had been explaining something to the class about when something was due. Also might I add i started loosing my middle frequency hearing around this time. I got up to ask her what she said and she yelled at me and said, "if you came to class more often you'd know what I am talking about". I was shaken and in shock a teacher would do this to a student in front of the whole class. I remember sitting down and got teary eyed. I know a few friends came to me and asked if I was okay. I just remembered nodding and just looking down at my book, but I was too upset to read.

Alot of different emotions came from this confrontation. 1, she's a punk and doesn't mind being told she is, she fed off of people thinking she was above them because she had a strong personality and frankly just a bitch. 2, its my fault this happened because I did miss alot of school, and if I wasn't sick I wouldn't miss alot of school.  3. But if im just crazy and somehow manifesting this pain then what the hell is wrong with me?

Jumping ahead to my junior year. The pain is too much. When I go to school in the morning I was going straight to the nurse after my first class. My lips would go pale and I'd get shaky and I always was on thr verge of crying from mental and emotional exhaustion. I think she knew I wasn't faking it and something really was wrong with me. She always let me lay down and never forced me to leave and go back to class. I guess now that my pain was causing my lips to go pale and fatigue started getting extremely bad it was obvious SOMETHING was wrong. I wish I knew the nurses name, she was one of the kindest and empathetic people I had in my life at the time.

3 weeks into my sophomore year my mom and I talk about letting me do homeschool. A high-school approved online curriculum created by University. I could no longer get out of bed in the morning. I was able to do my hw in bed though and was able to finish courses as fast as I wanted. Just that happening released so much stress off of my shoulders. That is something I will never be able to express, how thankful I am to my mom for finding a way to help me. Sometimes I wonder if it was just so she didn't have to deal with the school threatening me due to unexcused absences and even having her be threatened by the school system.

Sorry again for a long book.... I just needed to get that out. Next post about how I finally found the right doctor and how I was tested for IC in a way that is no longer considered humane to do, wtheck IC is and the road to remission.