What's It Like... having a disease

I decided to start a series of posts called "What's It Like..." - mostly because I get a lot of questions from people that start with "what's it like..." and end with a sometimes random question.

The first post in this series stems from a conversation I had with an awesome blogger who has Lupus. We swapped disease and syndrome stories via email recently and she asked "what's it like having interstitial cystitis?" This post also stems from the fact that I'm having an IC flare-up today and have been for a few days.

In order for me to properly answer that question, I have to tell you what it is. Interstitial cystitis, otherwise known as IC or Painful Bladder Syndrome, is an auto immune disease that affects the bladder. I have a form that includes Hunner's Ulcers. IC is kind of hard to explain. The lining of your bladder becomes inflamed and it can cause frequent urination (sometimes every 10 minutes) and an intense amount of pain. Adding the ulcers in just makes it that much more fun.

Now that you kind of understand the disease, I'll tell you my story.

I was diagnosed with IC at age 22 and had my first real flare-up after the initial test. My dad took me for a cystoscopy (with hydrotension) at a local hospital. Talk about invasion of privacy! I had a fun conversation with my Dad that day - I was on all sorts of medication. After the procedure, my Bubba gave me chicken soup and I went back to my Mom's house to ... well, sleep. Drugs are fun.

A few days after the procedure, I noticed that I was in a lot of pain and it was getting hard to stand up (which sucked because I was a hairstylist and you spend 99% of your time standing). I went home and was knocked out of commission for two weeks.

My first follow-up appointment confirmed that I was having a flare up and my doctor was a dick. He wanted to prescribe a medicine where the side effects included vomiting, diarrhea, nausea, and hair loss. No thank you. I wasn't signing up for that.

I eventually found a great doctor, with the help of my brother, who taught me to manage my disease through food and exercise.

It was a long time before I had another flare up.

So, what does a flare up feel like? It feels like your insides are rebelling and want to come out. Seriously. The pain is intense. I've learned to work through the pain using heating pads, cold therapy, even meditation. Sometimes the pain is too much and it takes all of my energy just to walk to the bathroom.

I'm hell-bent on doing everything myself because I still can but it takes me a while to do it when I'm flaring.

A flare up, for me, feels like someone poured acid down my throat and into my bladder and the acid is seeping into fresh wounds. Sound painful? You have no idea.

Most of the time, my flare ups are caused by stress. My life is stressful, I can't help it. I work a lot, and I work hard but I'm my own worst enemy. I don't take care of myself the way I did when I was a hairdresser. I set expectations for myself that are very high and somewhat not normal. When I don't reach my goal, I fear that those around me will think less of me. It's hard enough being a woman in the work force but when you don't really speak the native language or understand the culture... the stress builds on.

Anyway, a small amount of the time, my flare ups are caused by food. I can usually feel those flare ups coming on and can try to stave them off (unlike with the stress induced where it's like BAM! You're not leaving the house!) but food induced flare ups also bring up something called secondary anorexia. In lay terms, it just means that I fear food is going to hurt me - I don't starve because I want to be skinny, I starve because I worry something in the food might poison me and make me feel worse than I already do.

IC also brings on a plethora of other disorders. Along with secondary anorexia, I also have anxiety issues, irritable bowel syndrome (IBS), fibromyalgia, and chronic fatigue syndrome. Aren't I lucky? All this before the age of 30!

The worst thing you could possibly say to someone like me is "but you don't look sick!" It's as if the rest of the world expects me to walk around vomiting or with my arm dislocated just to look sick! I can function and often look just fine but the pain that lies inside my body is immeasurable and it's unlike any pain you've experienced. A friend of mine also has IC and had cancer - she equated her chemo treatments with what she experienced when she had IC flare ups.

That's how horrible it feels.

So, what's it like having IC? It's a pain in the ass. And often the gut.