Tuesday, March 29, 2011

Some Things You Should Know Before Judging an IC Patient

People with invisible illnesses take a lot of "you know what" from others. Totally healthy people can not understand how hurtful it is to hear whispers that you are not really sick. Having IC is not fun by any means and is not something anyone would choose to have or make up having. The lack of IC awareness combined with ICs invisibility factor makes IC patients a target for catty naysayers. 

Before you judge someone with IC or make that comment you are dying to say, here are a few things that you should know:

-Most IC patients look fine on the outside. Please get over it. If we need to leave the house we may choose to put on a stylish shirt and make up. We are not going to go out in public in ratty pajama pants all the time just because our bladders are sick.

-IC patients continue to live life, because we have to. We are not dying, we are just in pain. The pain has no cure, but it also can not kill us so we NEED to find a way to go on. Just because we get out of bed and live life doesn't mean we are cured. We have no choice but to be as "normal" as possible.

-You don't see us behind closed doors. Likely, unless you are a best friend or family member you only see us at our best. We pull ourselves together sometimes to go to a birthday party or to attend a book club meeting because we are lonely and we want to support the people in our lives. But you don't see us the hour before we leave the house or the hour after we get home.  It may take everything we have just to leave the house for two or three hours. Our bodies may punish us for an entire day just for going to an event for two hours.

-We don't like to be told what to eat or drink. If you actually know something about IC, you probably know that we are supposed to avoid acid ridden food and drinks such as tomato sauce or coffee. What you may not know is that IC effects everyone differently. Just because one IC patient can't eat pizza that doesn't mean that there aren't other IC patients who can. What else non IC-ers fail to realize is that there is a little magic over the counter item called Prelief. It is a powder that can be added to food to reduce the acid level. Many IC  patients use this to be able to eat more things. Thirdly, sometimes we just cheat and we pay for it the next day. Just like you may be on a diet and give in and have that extra piece of cake we may know something might hurt our bladder and give in and eat it anyway because we are simply sick of IC friendly food.

-If you think a UTI is the same thing as IC, please don't go around giving advice. IC is way worse than having a UTI because it has no cure. It is also harmful to go around giving IC tips to people if you are not educated. I can't count the number of times an annoying person has tried to shove a glass of cranberry juice in my face because they believe it will help my bladder problem. Cranberry juice is optimal for UTIs but very harmful for many IC patients.

-We can smile while in pain. We are actually really good at it. If we can keep our pain below a certain level, we can fake being comfortable. We do it for the good of the people we love, not to have you whispering that we are too happy looking to really be sick. 

-Once in a while, we are snippy. You would be too if your bladder was on fire, trust me.

-Please, never ask an IC patient when they are going to get better. We don't know. There is no cure, only good days and bad days. For some reason people can understand that diabetes has no cure, but the same people can't understand that IC has no cure.

-Give us a break if we need to cancel plans. If you have a friend with IC, go easy on them if they need to break a dinner date planned three weeks in advance. An IC patient can feel fine all week and then wake up in 10 pain and need to be curled up in a ball all day unable to move. 

Sorry for the bluntness, but people need to know that IC patients deal with a lot. It's not our fault that we look so attractive while doing it. One good thing about IC is that it teaches us not to judge people based on outward appearance alone. Don't wait to be diagnosed with an invisible illness to learn this lesson. Love more and judge less now.

Thursday, March 24, 2011

Where is the Bathroom? There needs to be a Neon Sign or Something

Do you remember being little and going on a field trip and your mothering always telling you to look for all the fire exits? Or what about the first time you were old enough to go to the movies by yourself with your friends? I bet your mother told you to look for the fire exit that time too. You probably always thought your mother was overreacting. But as an IC patient, I have found that I myself have become my own nagging voice. However, I am not in search of a fire exit, I am in search of a bathroom. You know how before the movie credits start a screen will pop up that tells you where all the fire exits are? I kind of wish other public places would have the equivalent for finding bathrooms.

I feel on a mission every time I go to a new restaurant to always know where the bathroom is. As awkward as I may feel going to the bathroom three times during the duration of a meal while my friends only have to go once or less, I feel a little less like an outcast if I can at least know where the bathroom is so I can gracefully slip away instead of running around like a chicken with its head cut off.

What really stinks about being an IC patient is when friends want to do something such as "roam around the city". Sure, it is FUN to walk into random shops and stuff, but one important question remains: where will I be able to find a bathroom? I have found train and bus stations are good for having public restrooms. So many restaurants are so fickle about not letting you use their bathroom if you are not eating there.  I feel like us IC chicks should be allowed to have a magical card where we can bypass the rules.

Another thing that stinks is even if I do have the energy to "go clubbing", which is rare these days, is that I find myself avoiding certain overcrowded places. I can remember being in college and waiting 20 minutes on a hellish line to go to the bathroom. That would never work now. My bladder would explode in the process.  

While on topic, another thing that bothers me about acquaintances or friends of a friend that aren't aware of my condition is the infamous line "didn't you just pee?".  Yes, I realize I just got up to pee 20 minutes ago, but I have to pee again get over it please and eat your crab cakes.
Another habit of mine if I see the night is coming to a close is finding the people I came with and figuring out exactly when we are going to leave, so I can pee right before we go. Most little kids hate when their parents force them to pee before getting in a car, but now as an adult with IC I WANT to pee before getting in the car so I can make a 20 minute drive home without a potty break.

So the bottom line is, our mothers were right. It is important to be aware of your surroundings. You never know when there could be a fire. I bet our mother's expected the entire building to be on fire, not just our bladders, but in the end it's kind of the same. When a building is on fire, it IS a 911 emergency. When our bladders are on fire, it FEELS like a 911 emergency, at least to us if we can't find a bathroom.

Wednesday, March 23, 2011

Been a while...

Sorry for my absence I have not forgotten about this blog and all my lovely IC and V peeps. Just been a CRAZY month. Lots of bladder trouble. Lots of birthday fun. Lots of stress and everything else in-between. Some days I am good at being an IC warrior, writer, fiance, friend and everything else that I am.  Other days I want to crawl under the covers with my bladder pain and anxiety and never come out. I guess it's all part of the "normal" existence that us bladder pain ladies have to go through. It's getting late, but I just wanted to check in. It's on my agenda to write a better post tomorrow.

Thursday, March 10, 2011

Blame It on the Pain?

One thing that really sucks about having IC or any chronic illness is that sometimes it is hard to tell when you are getting sick. Ya know, not chronic pain sick, but "regular" people sick. If non-chronic pain people feel nauseous and dizzy they usually know they are getting the flu. Us IC people however have to deal with the never ending madness of never knowing when odd symptoms can strike us from our IC itself or from the plethora of medications that we have to take. 

Just because we have a chronic illness doesn't mean that we are exempt from regular illnesses. It can be difficult because we don't want to look paranoid by running to the doctor with every little ache or pain only to find out it is just a flare of one of our many conditions. But at the same time, we could put ourselves in jeopardy but not seeing a doctor if we truly are sick.
Urinary tract infections are especially tricky for us IC gals as we can feel like we have UTIs a lot of the time and when we are infection free.  Yet once in a blue moon, we will get a real UTI on top of our IC.  Home test strips are really no help.  Many IC patients can set them off with no infection due to the mysterious high white blood cell count in our urine.

This little problem just adds one more stress factor into our already complicated lives.

Where do we draw the line?  Personally, I say when in doubt, go to the doctor. It sucks because we all spend tons of money on our regularly scheduled visits and probably don't want to go to another appointment, but it is better to be safe than sorry.  If you are wrong about your symptoms and your doctor gives you hell about it, I say it's time to get a new doctor.

Friday, March 4, 2011

Dude, Where's My Walk?

I participate in a lot of charity walks for all sorts of illnesses and conditions.  I have done everything from being a walking participant, to donating money to even being a team captain.  I love to support charities and conditions of all kinds. But seriously, dude, where's my walk?  That's what I feel like asking society.  IC needs a charity walk. We need awareness and we need it yesterday.

I don't think many people realize how serious IC can be.  Women are losing their jobs, their ability to walk correctly, the ability to socialize and the ability to eat everyday food because of this disease.  It is not okay that this condition has no awareness.  I think the healthy looking exterior of many IC patients leads to a lack of compassion and charity from the outside world.  If a non-IC patient could have an IC bladder for even a few hours they would be screaming for a cure.  

We need to speak out and demand awareness.  Women have suffered in silence long enough due to this silent beast we call IC.  It took long enough for the medical community to accept the disease, but now that they have the public needs to know about this.  Without awareness we will never find a cure.  Without awareness there are women every day who are being misdiagnosed or ignored.  I think a national walk for a cure for IC would be a big step in the right direction.  
Do you have IC?  Do you have a friend or family member who suffers from IC?  What kind of awareness would you like to see?

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