MissCasey1055
08-31-2005, 02:54 PM
So, for my Comp I class we had to write a process essay. I chose to write mine on how to make the best of IC. Keep in mind, it's only my first draft and I still have a lot of editing to do. =) Comment and let me know what i should add, take out, leave, whatever. Most of you are more wise than I am and I'll really appreciate all the advice you could give. :angel:
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Living with a rare disease and a chronic illness can be tough. I know this because this is what I’ve gone through for years with my disease, Interstitial Cystitis (IC). People don’t believe that you’re really sick when you are because it happens so often. You want a social life? Too bad! You can’t leave your house because you’re in so much pain and you have to go to the bathroom every 5 minutes. And how about school or work? Forget about it! It’s almost impossible to concentrate because the pain is excruciating. You’ve come to find out that a toilet is your best friend. Well here are some simple steps to ensure you make the best of your IC.
Not many people know about IC. Informing the people you’re closest to -- Friends, teachers, colleagues, family members, etc. -- about IC could really help out your situation. This way, if you need to leave the room for an emergency, most people know what the problem is and why you’re leaving the room. It also saves you from having to tell everyone you encounter about your disease. The more people you get involved, the easier it will be to get through.
Keeping a positive attitude is also a key factor in keeping up with your IC. Being negative all the time doesn’t help out your situation. It just makes you feel worse along with everyone else around you. Try to focus on the positive things. You may one day go into remission and not have to worry over everything.
I know from experience that it’s hard being a teenager with IC. You plan your entire day on when you can go to the bathroom or when you’ll be able to take your medication. Concentrating at school is virtually impossible. Y you’re either leaving the classroom every 10 minutes to go to the bathroom or you’re in so much pain you can’t concentrate on anything else. The best advice I can give you is to be strong and try to live thru it. There’s no ignoring this disease, but you have to try and make the best of it. I’ve found that talking to people who are going through the same things as you really helps. Because it’s so rare, there’s nobody in my area with IC. I’ve found an online forum especially for IC patients: http://www.ic-network.com/forum. I’ve found it to be a big relief.
Now along with this disease being so rare, people are going to have a nonchalant attitude toward it. You’ll hear quite often that it’s all in your head or that it’s not as bad as it seems, but they don’t understand because they’re not going through it. The best example I could use to try and make people understand is: If you fell down on a sidewalk and skinned your knee, the pain of IC would be equivalent to, if not worse, to pouring lemon juice or alcohol on a skinned knee. Not just once, but over and over again all day long. If people continue to bring you down or not care, simply ignore it. They’re ignorant and don’t understand just what you’re really going through and most likely never will.
Another downfall of IC is the diet. This can be especially hard if you’re young and are used to eating anything you want. Now with the IC diet you’re very limited. Nothing processed, no fruits, only certain homegrown vegetables, only milk or water to drink, no cheese except for white American, and no pastas. And that’s just a basic run-down. You’ll find yourself reading labels at the grocery store, buying foods from health food stores. However, there is good news. There are special cookbooks especially for the IC diet and they contain excellent meal ideas that are very good. Another perk with this diet: you’ll be skinny as a rail!
You also need to do the best you can to not get stressed. Don’t worry, I know what you’re thinking: “But I’m a teenager in high school! How do I not get stressed?” It’s easy. If you feel like you can’t handle the stresses of your normal high school surroundings, look into the homebound program at your school. Chances are your school has one. Since IC is a disability, you will most likely qualify for homebound. In fact, most IC patients in school do the homebound program because of the difficulty concentrating in a normal school setting. Aside the agonizing pain you face everyday, there are other symptoms that could get in your way at school or work. If you’re like me, you’ll have problems with Insomnia and Hypersomnia. The homebound program would come in handy with these symptoms too. You may have trouble getting to sleep at night, and once you fall asleep you don’t want to wake up, but once you do wake up, an hour later you feel like you need a nap. This could be troublesome for you at school. I would highly suggest the homebound if you feel like this is a problem.
Though there are a million more things that I could discuss with IC, I feel that these are the most important steps in making the best of your IC. If you have any more questions, I would suggest talking to your Urologist or family physician. Just remember, it could always be worse. Be happy for what you have and don’t let this disease bog you down. Keep your chin up. Every cloud has a silver lining.
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Living with a rare disease and a chronic illness can be tough. I know this because this is what I’ve gone through for years with my disease, Interstitial Cystitis (IC). People don’t believe that you’re really sick when you are because it happens so often. You want a social life? Too bad! You can’t leave your house because you’re in so much pain and you have to go to the bathroom every 5 minutes. And how about school or work? Forget about it! It’s almost impossible to concentrate because the pain is excruciating. You’ve come to find out that a toilet is your best friend. Well here are some simple steps to ensure you make the best of your IC.
Not many people know about IC. Informing the people you’re closest to -- Friends, teachers, colleagues, family members, etc. -- about IC could really help out your situation. This way, if you need to leave the room for an emergency, most people know what the problem is and why you’re leaving the room. It also saves you from having to tell everyone you encounter about your disease. The more people you get involved, the easier it will be to get through.
Keeping a positive attitude is also a key factor in keeping up with your IC. Being negative all the time doesn’t help out your situation. It just makes you feel worse along with everyone else around you. Try to focus on the positive things. You may one day go into remission and not have to worry over everything.
I know from experience that it’s hard being a teenager with IC. You plan your entire day on when you can go to the bathroom or when you’ll be able to take your medication. Concentrating at school is virtually impossible. Y you’re either leaving the classroom every 10 minutes to go to the bathroom or you’re in so much pain you can’t concentrate on anything else. The best advice I can give you is to be strong and try to live thru it. There’s no ignoring this disease, but you have to try and make the best of it. I’ve found that talking to people who are going through the same things as you really helps. Because it’s so rare, there’s nobody in my area with IC. I’ve found an online forum especially for IC patients: http://www.ic-network.com/forum. I’ve found it to be a big relief.
Now along with this disease being so rare, people are going to have a nonchalant attitude toward it. You’ll hear quite often that it’s all in your head or that it’s not as bad as it seems, but they don’t understand because they’re not going through it. The best example I could use to try and make people understand is: If you fell down on a sidewalk and skinned your knee, the pain of IC would be equivalent to, if not worse, to pouring lemon juice or alcohol on a skinned knee. Not just once, but over and over again all day long. If people continue to bring you down or not care, simply ignore it. They’re ignorant and don’t understand just what you’re really going through and most likely never will.
Another downfall of IC is the diet. This can be especially hard if you’re young and are used to eating anything you want. Now with the IC diet you’re very limited. Nothing processed, no fruits, only certain homegrown vegetables, only milk or water to drink, no cheese except for white American, and no pastas. And that’s just a basic run-down. You’ll find yourself reading labels at the grocery store, buying foods from health food stores. However, there is good news. There are special cookbooks especially for the IC diet and they contain excellent meal ideas that are very good. Another perk with this diet: you’ll be skinny as a rail!
You also need to do the best you can to not get stressed. Don’t worry, I know what you’re thinking: “But I’m a teenager in high school! How do I not get stressed?” It’s easy. If you feel like you can’t handle the stresses of your normal high school surroundings, look into the homebound program at your school. Chances are your school has one. Since IC is a disability, you will most likely qualify for homebound. In fact, most IC patients in school do the homebound program because of the difficulty concentrating in a normal school setting. Aside the agonizing pain you face everyday, there are other symptoms that could get in your way at school or work. If you’re like me, you’ll have problems with Insomnia and Hypersomnia. The homebound program would come in handy with these symptoms too. You may have trouble getting to sleep at night, and once you fall asleep you don’t want to wake up, but once you do wake up, an hour later you feel like you need a nap. This could be troublesome for you at school. I would highly suggest the homebound if you feel like this is a problem.
Though there are a million more things that I could discuss with IC, I feel that these are the most important steps in making the best of your IC. If you have any more questions, I would suggest talking to your Urologist or family physician. Just remember, it could always be worse. Be happy for what you have and don’t let this disease bog you down. Keep your chin up. Every cloud has a silver lining.