Rain, Pain and IC Awareness

Pain drops keep falling on my head.

So if you are on the east coast, you are likely like me locked in your home all weekend riding out hurricane Irene. We don't do hurricanes typically here in the northeast so most people are not dealing with it well. I needed to take a break from all the Irene news because watching too much of it makes you paranoid. So first I watched a good movie and then I began thinking about rain and pain.

I think there is some major connection between storms and chronic pain of any kind. Every time there is a storm coming, I begin to have IC related pain in addition to pain in a few other parts of my body which some doctors believe may be Fibromyalgia. Earlier tonight as the rain got worse a shooting pain went through my whole body: in my bladder, my thigh, my stomach and even side. It lasted for 20 minutes and was horrible. 

Do any other ICers experience rain pain? 

My mind is kind of all over the place tonite, so I also wanted to bring up IC awareness month. IC awareness month begins next week in September. It is very important to participate in IC awareness. Even if you do not have IC, you likely know someone who does. It is estimated that over 4 million Americans suffer from this painful condition. Many still are shamed into not talking about it openly, so there is a good possibility that you do have a co-worker, friend or acquaintance that has the condition and you don't even know it.

It is very easy to participate in IC awareness month. All you need to do is spread the word about the condition the way that you would if you were promoting diabetes awareness or cancer awareness. If you go through my blog posts you can find many posts describing the condition and you are more than welcome to use that information to promote awareness. 

The color of IC awareness is blue, so you can consider having a blue shirt day at school or work. 

Women have had painful bladder issues for ages and were forced to be silent for decades. We don't want to be silent anymore. We want a cure...and if we can't have a cure we at least want adequate pain management, educated doctors and reliable treatments. We do not have all of these things and it is a sin considering how advanced modern medicine is.

IC can be very painful and can cause people to experience a very low quality of life at times. This disease does not discriminate. If you do not want one of your loved ones to suffer from painful bladder syndrome tomorrow, you need to help us fight for awareness today.

Dear Doctors, It's Okay to Tell Us That You Don't Know

Just because you can't see our pain, doesn't mean it isn't there

There are plenty of awesome doctors in the world. There are also plenty of doctors who are jerks. When you have an invisible medical condition or conditions, your odds of running into a few jerks along the way are pretty darn good. 

Doctors go through way more schooling than the rest of us, but it does not make them gods. It may make them extra smart or extra dedicated, but they are still just people. Our teachers educate us as children that it is okay not to know everything. They tell us that there is always more to learn and that there is no such thing as a stupid question. Maybe some doctors go through so much schooling that they forget these simple basics.

Dear Doctors (some of you),

Just because you have a medical degree doesn't mean that you know EVERYTHING. No one expects you to. If you don't know what is wrong with us, tell us and refer us to someone else for help. This is all we ask as invisible pain patients.

Unfortunately, this is not what we always get. It hurts us when you tell us "we are making up the pain" just because you can't figure out the puzzle. We cry at night when you call us "drug seekers" because you don't know what is left to prescribe. You insult us when you throw around terms such as "it's all in your head".

This can be hurtful to ANY and ALL people with invisible pain of any kind, but it gets just about ridiculous when you accuse someone of making up the type of pain which goes along with conditions such as IC and Vulvodynia. Trust me, no one wakes up one morning and says "hmmm...I need attention, I think I will go to the doctor and say that my vagina hurts". 

It can be really, really hard for some IC and V patients to come forward. Some of us can get embarrassed by the extremely personal nature of these conditions. Just having the courage to come to your office may have taken us weeks or months. So when you finally see us, if you have never heard of pelvic or bladder pain as severe as ours, please just say so and send us to a specialist. Our health matters more than your ego. We won't judge you for sending us to someone else, we will thank you.

What we will judge you for is making fun of us or making us feel like our pain isn't real. Watch one episode of Medical Mysteries and you will learn that far more bizarre conditions than IC exist.  Don't make us feel like less than we are. We are human and we deserve to be treated as so.

You're human too, so remember that it is okay to tell us that you don't know.

ICan't Dance the Way That I Used to

I discovered something this past weekend at my bachelorette party: ICan't dance the way that I used to.

If we were to rewind to my college days, I could write a novel about those times called "Confessions of a Party Girl". I loved dancing. Before I was even legal to drink, I would get my hand stamped to go into the clubs and dance the night away. I would be on the dance floor from 9pm until 3am in stilettos three days a week.

Fast forward to the present, I am not even 30 years old yet and ICan't dance like I used to. Having IC just makes you exhausted. I had a really fun bachelorette party, but I did a lot, it was a busy day. There was traveling, dining out, gambling (all which I felt well during--yay me) and finally the dancing. 

After just a little while in the club, my bones hurt and I felt swollen. I started to feel exhausted and in a lot of pain. (I think I may also have Fibro in addition to IC but I have not gone for a diagnostic test yet b/c I am dreading having ANOTHER chronic ailment.) Anyway, my friends were awesome. When I couldn't dance anymore we went and hung out on the patio so I could have a chair. When we were done, we went back to our hotel room and laughed and pigged out on room service.

I know I am lucky to have friends who still love me even though ICan't dance the way that I used to, but it was slightly depressing for me anyway. It just shows how chronic pain can change life. Now that I am in my late 20s it is best I don't go out dancing all the time anyway, I know it is right to have other priorities, but I guess it would be nice to know the option is there. 

I felt slightly sorry for myself the next day as dancing to club music can be really fun, but then I thought about how lucky I am for the things that I can do and the important people in my life.

So maybe ICan't dance like I used to, but it's okay.

There are plenty of things I still CAN do:

ICan be an awesome friend, family member and fiance.

ICan still participate in lots of other fun things as long as I know my limitations and always do what is best for my body and my health.

ICan have a voice.

ICan get married.

And the list goes on...

And one of the most important things ICan do is spread the word about IC so that we can find a cure. Writing blog posts like this is a small start.

When Your Bladder Needs a Vacation

Don't spend half of your vacation searching for a restroom.

Suffering from IC can impact the life of patients in many ways. One major thing IC can interfere with is travel. Patients who need to use the restroom multiple times an hour may be nervous about taking long car rides or have anxiety about finding restrooms ( I am the queen of this, one of the first things I do in any new restaurant etc. is look for the bathrooms). Patients who suffer from pelvic pain may be concerned with laying on the beach  due to sand getting inside of a bathing suit. 

Remember that IC is stressful enough and that you deserve a vacation just as much as anyone else. You don't need to let IC control your travel plans forever. 

Here are a few tips to keep in mind if you have IC and are trying to plan take a trip:

-If you need to travel by car, study your route before you go. There are likely rest stops along the way. Knowing where they are can take away a lot of anxiety. Only travel with supportive loved ones who will be willing to stop as often as you need to.

-Make yourself comfortable in the car. Bring cushions, portable heating pads or anything else that will help you with the ride.

-If you are traveling by plane, you will need to get used to using plane bathrooms. No one likes to use tiny plane bathrooms, but us IC gals really have no other option. Getting an aisle seat can make things a little bit easier so that you can get up without having to climb over other passengers.

-When going to the beach, make sure to bring a chair. You will get way less sand in your bathing suit this way. Getting too much sand in a bathing suit can be a nightmare for a Vulvodynia sufferer.

-If you swim in the pool or ocean, get out of the wet bathing suit and put on something dry as soon as possible. Sitting around in a wet bathing suit can cause a yeast infection which can make a V or IC flare worse. Not chilling out in a wet swimsuit is a tip all women should follow, even those without IC.

-Make sure to pack all of your medications. Forgetting them may cause a flare or even just give you a lot of anxiety. When flying or taking a cruise, keep your medications in your purse or another bag you will carry with you. Do not put your meds in transported luggage that has the chance of being lost.

-Plan activities in advance that you know are IC or pelvic pain friendly. By doing this you will not feel left out if the group you are with wants to do an activity that you can't participate in.

-If you have a lot of food triggers, do research about restaurants in your vacation area to make sure there are foods that you can enjoy.

-Stress is a flare trigger for many patients. Pick a vacation that is on the slower paced side and not a vacation where you have to be constantly on the go.

The Mirror of Pain Has Two Faces---And they Both Suck

Can you see your pain?

I am often frustrated by the invisible element of IC. I think about all the times I have been in tears in doctor offices and hospitals in the past with no one believing me that I was in so much pain I could barely walk. I feel like my fight back then would have been easier if there was some physical sign of my pain: redness, a bruise, a cyst---just something or anything to show the doctor I was not making it up.

I think it gets frustrating for a lot of women with IC, Fibro and other similar illnesses.  Many of us are under 50, have beautiful smiles and wear youthful clothes. Some doctors and people look at this and think that we are liars. They think we are too pretty to be in pain. There have been days where I wanted the words "my bladder is one fire" to magically appear across my forehead so I could have an easier day at the doctor office. 

Sometimes I become so obsessed with fighting for the rights of people with invisible illnesses that I forget about the other side of the spectrum. I think I started to forget about all the people out there who have visible illnesses. There was an episode of the Tyra Banks show on the other day featuring young women with rare medical conditions...in this case all visible. There was one woman who lacked certain facial bones, another who due to a muscle hardening condition had one leg shorter than the other and a third who could never get wet without her skin turning red.

I felt so bad for these women that I was in tears. Clearly, when a doctor sees people like this, he or she KNOWS something is wrong. This is not the norm and therefore the doctor wants to find the solution. But even those these people may have an easier time inside the doctor office getting help, I thought about how hard life must be for them outside of the medical world.

Since IC is invisible I have the choice of who to share my illness with. I choose to be an IC poster girl whenever I can because I feel it is part of my calling in life to inform and help others. But I can turn off that button whenever I choose. No matter how much pain I am in I can walk into any restaurant, business or store and no one can tell that I have a medical condition. People with visible conditions have no choice but to represent their illnesses all the time. When a person has something as visually obvious as the conditions I saw on this show, every time he or she leaves the house people stare and ask questions. The women discussed how it effected their everyday routines, dating life, social life, work life etc. They were all brave and lovely women and seemed to be handling it the best they can, but you could tell it was very, very hard to walk in their shoes everyday. 

So while I wish there was an easier way for doctors to see IC from a diagnostic standpoint, I am learning to appreciate the positive parts of its invisibility. If you struggle with your IC life remember that you are still are blessed to have a choice, the choice to tell others about your condition or keep it private. There are many equally painful illnesses where people are not given that choice.

Pain definitely has two faces and during a flare they both suck equally. Wishing all ladies with chronic pain (visible or invisible) a happy and low pain rest of the week. xoxo.