Monday, April 25, 2011

Because Someone Has To

We need a female version of Lance, with IC of course.
I often wonder if people outside of the IC world think I am nutty. I mean really, why on earth would someone start a blog about a bladder disease? Do you want the short answer? Because someone has to. Women with IC are not represented. Prostate cancer has Lance Armstrong to speak for them. Parkinson's disease has Michael J. Fox. IC has no one, no one famous at least. There is not one celebrity out there willing to stand up and be the spokesperson for IC. 4 million Americans reportedly have IC, so you would think at least one of them would be a person in the spotlight, but so far no one is coming forward and offering herself up to be our leader. So until that time, regular people like me need to stick up for us IC gals.

Luckily, I am not alone. Although we lack celebrity representation, there is a large number of women not afraid to show their IC support on Facebook, Twitter, forums and more. Even though not one of us alone can have the same impact as someone like Lance Armstrong, together we can make an impact. We have a long and hard road a head of us, but what the public fails to realize is that having IC makes you tough. IC hurts. IC has no cure. People with IC fight everyday to live life, so we will continue to fight for media coverage, fight for awareness, fight for better medications, fight for a cure. 

No matter how much parts of the medical world want to ignore us, there are 4 million people out there in this  country that can support each other. So those of us who want to try and make a voice for IC patients everywhere are standing here together working to do the best we can to raise IC awareness with no funding, no charity walk and no celebrities. 

So that's why I blog about IC. Because someone has to. And I just want to take this moment to thank all the other ladies who have blogs and Twitter accounts and websites that fight for IC awareness. Together we can make a difference.

Monday, April 18, 2011

IC: An Unpredictable Beast

Sometimes I think what I hate the most about IC is its unpredictability. In life, I have always been a planner. I was always the person who would have my weekend plans ironed out by Wednesday night. I was the person back in school who would finish a paper due on Tuesday by Sunday.  IC is a planner's nightmare.

Life with IC is like waking up everyday and 
having to roll a set of dice.
An IC patient can be fine one minute and in 10 pain the next. The pain can be so bad that it shoots through your bladder and your leg and flat out just makes you nauseous. IC flares are so mysterious. IC flares ruin plans, ruin days, ruin nights. Sometimes I may even be on the way some place and feel fine and then feel sick by the time I get there. Sometimes I will live life carefree and "normal" for five days straight and then BOOM out of nowhere my IC likes to remind me that I am not alone in my own body.

All IC patients have medications and tips and tricks to attempt to avoid flares, but nothing is guaranteed to work. Since no one knows what exactly causes IC, flares find their ways to surface. 

I wish IC had a pattern, had a rhythm, had some sort of cycle...but it doesn't. I don't think I have ever cancelled plans on someone until IC came along. I love reliability, but IC does not. 

I'll keep this post short and sweet: IC is an unpredictable beast. I wish someone would figure out how to tame this beast already. 

Thursday, April 14, 2011

Why is it Taboo to Talk about Bladders, but okay to Talk about Sex?

Something that really pisses me off as an IC sufferer is the fact that women are made to feel ashamed about discussing this illness. Many doctors and non IC patients act like talking about the bladder in public is taboo. I guess because it connects to the female anatomy it seems too personal. Now, if it were 1922, maybe I could see their point, but I don't see it today. Everywhere we look sex is all around. It doesn't matter if you are interested in seeing it or not...every time you turn on the TV, radio or log onto the Internet you are bombarded with sexual references and jokes. I think it's just a little bit silly that people expect IC and pelvic pain patients to act like meek lepers who should be ashamed while sex continues to dominate the media. Yes, I said it, I said pelvic and bladder in a sentence and as long as it's okay for Tila Tequila to flaunt herself on TV and for rappers to promote sexual songs to young people I honestly see no problem with it.

I believe adults should be able to read about and discuss any medical condition no matter what part of the body it has to deal with. If we don't talk about IC we will NEVER find a cure for this horrible condition that is effecting millions of people. At least 4 million people in America suffer from IC. If you are at a party with at least 80 people, the odds are someone in the room has IC and you don't know it. Heck, they might not even know it because they are too scared to seek help. 

Every cause has to start somewhere. Everyone knows that the breast cancer ribbon is pink and the HIV ribbon is red. When will people know what color the IC ribbon is? If we don't speak about this condition no one ever will.

I think IC also gets it's taboo rep due to the fact that a majority of the suffers are women. Men can get IC, but women are the primary group plagued by this condition. Every single day I see erectile dysfunction commercials on TV and people seem okay with that, but the minute I try to talk about a bladder people think there is something wrong with me. Personally, I think there is nothing wrong with me or any out spoken IC patient. I think there is something wrong with a society that lets TV shows air that could pass for soft core porn, but make women ashamed to talk about relevant health issues.

In 1991, Salt-N-Pepa released a song called Let's Talk About Sex, this song which talked about having sex became a number one hit in several countries. If society could handle that song 20 years ago, I think we are ready to talk about female medical conditions out loud now. 1991 is long gone. We already talked about sex. I say it's 2011, let's talk about IC.



Monday, April 11, 2011

Positive Things That Chronic Pain Can Teach Us


Suffering from chronic pain, I go through phases where I spend a lot of time whining. I mean why not whine, pain sucks. However, I think it is important to always look at both sides of the spectrum. IC and other chronic painful conditions are difficult to live with, but having IC can also teach us to see the world a little differently.

Here are a few positive things that having IC has taught me:

-IC has taught me to be more understanding. Before IC, if someone ditched me at the last minute for plans I would automatically assume I was being stood up for a better offer. Now I realize that sometimes people cancel plans because they are suffering.

-IC has given me the chance to educate. I was fortunate enough to find out what was causing my pain. There are still many people suffering who don't know what is wrong. I can share my stories to help other people realize that they need to go see a new doctor and what questions to ask.

-Chronic pain has taught me that it is possible to hit rock bottom and bounce back. I am pretty sure laying on the floor in 10 pain or being thrown out of the ER "because I was faking" qualify as rock bottom. Seeing how far I have come and how much I can still accomplish with pain in my life means a lot.

-Pain has taught me that there is more than one definition of normal. We all can only be as normal as our specific situation allows us to be. Having to sit on a cushion on hard chairs isn't weird to me, it's just my normal.

-IC has taught me to be less judgmental.  Just because someone looks fine on the outside doesn't mean that you know what they are going through on the inside. Pain comes in all shapes, sizes and colors.

-IC has made me more creative and innovative. I have always been creative when it comes to writing and things of that sort, but IC has helped me to be creative in ALL aspects of life. I won't even begin to talk about the kinds of "ice packs" I have come up with and the creative ways I have had to sit. If you have IC I am sure you know exactly what I mean. It makes me realize that where there is a will, there is a way.

-Chronic pain has made me appreciate the little things more. People take for granted pain free weeks, months and years. I appreciate pain free days and magic moments just a little bit more than I used to.
I can write 500 pages about the negatives of IC and chronic pain and there would be enough text to fill them and tomorrow I may go back to my rants, but right here and right now it felt good to mention the few positives that come along with living a life with a condition that many have but not many have heard of.

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