The hope to inform

There’s just times when I feel like giving up. I know can’t, but it’s just too much at times. There are times I wish I would have never found out I had IC, having to worry about what I eat, and always taking medications. I honestly just think that I’m afraid. Afraid of what comes next for me. Will I ever get better? Will it ever go away? Will they ever find a cure? I don’t know any of these answers, and I probably won’t know for a while.

I think this has just been hard on me, because I’m so young and now I’m always worried. Worried about my health and taking care of myself so I don’t get flares ups, or end up in the hospital. I really don’t think worried is the right word, more like scared. I want answers to my questions, but I’m scared it won’t be the answer I’m looking for.  I’m not sure how this will affect my future, but in many ways it has. I’ve been taking better care of myself and my health. Sure I don’t like the fact that I’m on a diet, because I love food, but it’s what I have to do to take care of myself.

I’ve realized lately while doing this project for class, I’m more aware of what is going on with my body in terms of having IC. I’m more open about it, like to talk more about my IC. I love telling people about it now, because with the project I’m not only educating myself but everyone I come into contact with.

 Just telling them that I have IC is a great start. Well yes and no, because they all look at me like I’m said something in a foreign language, but it’s amazing when people ask me what it is. I get the joy of explaining something to them, in a way that they will be able to understand. Once I start talking about IC, they start asking questions. It’s great and I feel more at ease each time I talk about it.

I share any information I find out with my friends and family, because they are my support group. I want others to know more about IC as well. I’m still waiting to her form the girl at my school which the nurse told me about. I think that once she realizes what I’ve done and been through, she will come back to school. I also hope that with this campaign project that people will start asking questions, and people who have IC can get more support from everyone around. That way we don’t have to feel like giving up, to know that we are stronger than this. THIS IS THE FIGHT  THAT WE WILL WIN!

Never said it would be easy

While working on this campaign for class I decided to talk to the school nurse. Just to see if maybe she knew of a way to help me get the word out about IC awareness. Before I walked in a made sure I had my list of details and important information to tell the nurse in case I had to explain to her what IC was. I was prepared to go in and explain everything to her, once I got in there and introduced myself I explained why I was there.

To my surprise she told me that she knew about IC, that her sister-in-law had IC and she researched what she could to know what IC was. So I felt a lot better that I didn’t have to explain to someone what IC was. After a while it gets old. I told her that I suffered from IC and she said that she wished she would have met me a few weeks sooner, because a student came into her office and told her that she just found out that she had IC. She informed the nurse that she didn’t know how she was going to deal with her classes and all the pain that IC caused her. She just couldn’t deal with it, but she didn’t want to drop out, she ended up dropping her class because it was too much to handle while going to school.

I honestly feel her pain because I have been there. When I first start having problems I missed a lot of school. I informed that teachers that the doctors were trying to figure out what was wrong with me and now that I know, I tell my teachers the first day of class that there may be times in class when I have to leave, or just may not be at school because the pain is too much. All my teachers have been very understanding about in after I explain to them what it is and how it affects you.  

Each day is a learning process and I know where to push my limit. I also know that I can’t let IC control me, I still have to control my life and not give up. It is a fight that you have to be willing to fight, if not it will control your life and won’t be able to do the things you love. I think by doing this awareness people will start to understand and start to see IC and how it does affect people. I hope it will be and eye opener for people.

Let's get informed

For class we are working on a campaign, or an awareness of something. I decided to make IC awareness my topic. I want to inform the students and staff at ICC about IC.  I think this is important since over 4 million people in this world have IC, just found out they have IC or don’t know they have IC. If you think about it 4 million people is a lot of people. Although most of these people are women, a few men also have this medical problem.

Finding out that you have IC may be a hard concept to accept simply because no one has really heard about it. So with this campaign I hope to be able to inform students around my school about IC. Many of the doctors that I have gone to, you have to give them your medical history, well when I tell them that I have IC they look at my funny. Simply because they don’t know what I am talking about. So I must explain to them what it is and the medications I am on and how they are suppose to help me.

Now I would think that if you were in the medical field that you would know about different diseases even if it’s not common. I hope that be informing students at my school about IC that students who are going into the medical field can keep an open ear as to what is going on, and maybe they will start doing research and become more aware of IC. So that in their future they might be able to help someone get the right treatment instead of looking at them and telling them that “it’s all in your head.”

This link has some interesting facts that would help peole understand more of my view. Number 8 is my favorite
http://www.icawareness.org/dailyfacts.html

IC Awareness month

October happens to be IC awareness month. Now I happen to get a new letter each month about new ideas or findings that are being done. So in order to help out you can go to this link http://www.icawareness.org/pressrelease100410.html and read more on IC if you are not familiar with it. It will give you an over view of what some people have been through, simply because doctors thought it was something else. There are other links on the site as well. You can check out the diets that we are on and different stories of people who are dealing with IC.  Also http://www.ic-network.com/ is a really great website to go to for information. They have video clips on their giving information about what’s going on in the IC world. Also you can check and see what kind or research they are working on. Stories from doctors and patients with IC. Many different things on the website you can check out. It’s a good place to go for research if you want to know more about IC, instead of going to Google, or other search engine. So please take the time to check out the links and learn more about IC, because the more people know about it the more funding we can get from the government to run test. Right now the government has taken away a lot of the funding because other people don’t see IC as a problem because it doesn’t affect them. So just beware that by looking at these sites can help IC groups get money for testing, so those of us with IC don’t have to suffer.

Wondering

Still searching for answer, and I’m sure I always will be. The thing that has me wondering is why I haven't had any problems lately. I've been noticing that my kidneys aren't bothering me anymore and I haven't had to run to the restroom every 15-20 mintues. I’m not saying that this is a bad thing or anything here. Just makes me curious. I really hope it’s my medications doing their job.
I’m just afraid that know that I said I wasn’t having problems that a whole bunch of problems are going to come out of nowhere. It always happens, so I’m not really getting my hopes up, just being thankful that I’m not in pain, and having to worry as much. I will be glad when my urologist tells me I will be fine to be taken off my medication. That’s only 6 more months of waiting and taking meds, how this all seems like forever, but at least it’s not any longer then what I actually have to wait.
 All I know is I’m ready for this to be over or more like I’m ready for them to find a cure. Finding a cure is going to be so hard, because each person is different and has IC for different reasons. I don’t know if tests can prove how IC really comes about. I do know that right now in the newsletter I get each month that October happens to be IC month. As I was reading the newsletter, some new study was being run, and they needed volunteers for the study.
They didn’t give out any information on just that they were looking for people. I thought about talking to my parent’s about signing up for it, but I didn’t want to go out of State for a few weeks. I just hope they find answers and more ways to help us. It’s a long journey down a hilly road, with a few twist and turns along the way. Just have to keep hoping that one of these tests will be able to help and make a difference for me and all the others

Every day

Every day when I wake up, I’m not really sure what the day is going to bring, or how I’m going to feel. It’s hard going through this. I can't really make people understand everything about it. IC for me is just a learning process because everything changes and you find out something different. Like eating something that you’re not sure of and then realizing you shouldn’t have eaten that. My diet for me changes all the time, there are times when I can eat a baked potato with sour cream, cheese and butter on it, and some days when I eat one it bothers me. It’s all like a game. You never know what the outcome is going to be. I know for a fact that I don’t want to suffer and have any pain so I try to avoid it has much as possible.
One way I try to keep myself from any pain is exercise and dance. I exercise to keep my body in shape and to also help relax my muscles.

I’m a waitress and I do put a lot on strain on my back and if I pull a muscle in my back it can really bother my kidneys which will cause great pain. Also I am currently taking modern dance at school and I found that it helps when I’m having flares. All the free flowing movement that is involved in this kind of dance allows me to unwind my muscles and also helps me build muscles up. By dancing it eases the pain when my kidneys or my bladder are bugging me. There are so many different possibilities for me to ease my pain but I think through dancing and exercise is the easiest way for me. Each day I learn something new or deal with another side effect of having IC, but it is a learning process that will take time. I can not cure this nor is there a cure for this, but I will stay positive throughout all of this. Staying strong is the most important factor, giving up and giving in will only make IC problems worse.

Flares

OUCH! The pain can be so overwhelming at times. How do you stop your bladder from hurting? Well I could take a pain medication if I was given one, but the doctor won't allow that. I have to learn to work through the pain as bad as it may be. Today I honestly feel like someone has stabbed me in the back and are pouring acid in my bladder. The pain is just everywhere and I can't stop it. I have to think of something else get my mind off of it before I can call it quits. I can't help but wonder how people deal with it. I want to get better I do, but there are so many things an always have to worry about with IC. I mean who would want a bladder that looked like this:

I really don't want mine to look like that but it does. I have one of the worst cases my doctor has ever seen. I take my medication everyday every 8 hours that way I’m on a schedule and don't forget to take it. But when the pain is like it is, all I want to do is curl up in a ball and cry. There have been some times when I wanted to go to the hospital because the pain was so bad. At times I just don’t know what to do. This pain is something no one should go through. I would rather me breaking my arm compared to this pain. With the flares that I get it also makes me feel like I have to use the restroom a lot more. It’s just that feeling that is there, like you just drank a gallon of water. Because I constantly feel like I have to “Pee” I miss out of a lot of things. Like the teacher talking in class about a project or being at work and saying you’ll be right back when really you don’t have to use the restroom. Everything about IC is not fun in general, but it’s the way my life is now, and it’s something I have to work through every day and for the rest of my life.