Everything Else is Just Bullshit

Usually all the posts in this blog are relevant only to those with IC or another chronic health issue, but I feel like this post is something many other people can relate to as well. This thing call life, it is filled with tons of surprises, not all of them good. Sometimes there is only so much a person can take.

Each day you rise and face whatever your daily routine may be. Your routine no matter if it be ideal or simply just bearable becomes the norm, you adjust. But then there comes a time when life throws a wrench in the road. Maybe one wrench isn't enough. Maybe two, three or four wrenches get thrown at you all at once. 

Crisis and hardship can be devastating for anyone, but I think when you already suffer from chronic pain, it makes it even harder. Sometimes it can feel like you are climbing up hill with a ball and chain locked around your ankle just to survive the new route your life has decided to take without your permission.  

There are lots of messed up people and things in this world. Sometimes it can feel like it is your job to fix everyone and everything---it isn't. Unfortunately, many people with the best of intentions wind up in the worst of places. Even at your most selfless moments you can find yourself preaching to a choir that just won't listen.


Some people in this world are destructive. Instead of getting help for their own issues (and we ALL have issues of some kind) they drag people down in order to make themselves feel better. Remember that you are not a punching bag. 

There is only so much burden you can carry as one person. There are only so many mountains you can conquer, there are only so many people that you can make smile. After a while it is too much for just one person to deal with. You deserve help carrying life's load. If you realize this too late the consequences can be devastating.  


It is important to know when to step back and say "ENOUGH". Life is meant to be lived, not to break you down limb by limb.


If you feel that your life is spiraling out of control, stop, take a deep breathe and re-evaluate. 


Always remember to put your health first. If you don't put your health first, you will come in last. If you already have IC or any other medical condition mental or physical you can make your conditions worse by taking on too much. If you are perfectly healthy, you want to stay that way. Excessive stress can put you on the sad path to sickness.


After you have your health in check, focus on your loved ones: your significant other, your parents, your children, your siblings, your TRUE friends etc. You need good people in life to laugh with during the good times and hold your hand during the bad. You can do the same for them. 


And what about everything else in life? Sometimes there comes a point when everything else is just bullshit.

Sick? Not Sick? The IC Cycle of Hell

Some medical conditions come on and then are cured for good. Other medical conditions may make someone incapacitated every single day. IC falls into a group of conditions where you can have good days and bad days. There is no one steady IC cycle. IC is an unpredictable beast. Although many patients do have SOME IC symptoms every single day, most patients go through flares and that is when they feel the sickest.


When a patient is not flaring the person may be pain free or just experiencing minor symptoms or low level pain. During times like this it can be easy for a person to complete normal tasks: working, shopping, socializing etc. When a flare strikes however that same person may find herself living in the bathroom or the bedroom. Flares can make urination frequency out of control and put bladder and pelvic pain at a 12 on a scale of 1 to 10. It can be really hard for an IC patient to know just when a flare will happen. While some people know what their triggers are (certain foods, stress etc.) there is no solid way to avoid or predict a flare. Many times it can seem like a flare comes on for no reason.

How long does a flare last? Unfortunately, there is no way to tell. Flares sometimes last hours and other times last days. Some people are in so much pain and agony during a flare that they can barely walk from the living room to the bathroom, let alone do anything else.

This is the most confusing part of IC for many family members and friends of an IC patient. It can be REALLY hard for a person to understand how his or her loved one seemed perky on Monday and by Wednesday is in so much pain that the IC-er is considering going to the ER. 

It is important to remember that even when an IC-er is not flaring and seems happy it doesn't necessarily mean the person is completely comfortable. Some people can get their pain at a zero and frequency under control when they are not flaring and other patients can not. Some IC-ers have to develop a new normal. If a person can never get his or her pain below a 3, then that person adapts and finds ways to complete activities when his or her pain is at a 3. But everyone has a limit. When pain starts to creep up to a higher level, typically 8 or above for many, there is just no way for normal activities to be completed.


IC is still such a mysterious illness. No one hates the mystery more than us IC patients. Before IC I was a planner. Everything always had to be planned way in advance and executed just right or I couldn't take it. IC has taken that away from me. I still try to plan things, but sometimes they don't always work out as planned due to the IC cycle of hell. I never know when a flare will hit so hard that I simply can't get out of bed.


If you have a friend with IC please show compassion. I know it can be frustrating if he or she bails on something at the last minute, but your friend can not help it.

I realize it can be hard to accept that your loved one is sick especially since he or she likely looks fine from the outside. The most important thing to remember is that IC-ers are still people, people with feelings and we just want acceptance and understanding until the medical world catches up with us and finds a cure. So if we are sick one day and fine the next we are not faking, we are stuck in the IC cycle of hell.

What Doesn't Kill You Makes You Stronger (?)

They say what doesn't kill you makes you stronger. I guess in some ways that saying is correct. As I have mentioned in a previous post my husband has been very ill and was even in a coma at one point. I went through hell with hospital visits, fighting with doctors, doing paper work, praying for my husband, crying, remembering to paying bills on time, being told that my husband might not make it etc. I am proud to say that now my husband is HOME. He still has a road ahead. We have at home nurses, PT and OT visiting regularly, but he is alive and will eventually make a full recovery. 


Dealing with that situation and now being a home caregiver has made me stronger in some ways. It made me realize that I am a brave woman who can survive almost anything. I found courage I never knew I had. I fought with all my might for the man I love and never gave up. It was hard, but it didn't kill me and it made me stronger in the sense that I now  know I am a brave, intelligent person with unimaginable dedication. 


However, since I suffer from IC it did not make me stronger in a physical sense. My body is weak. The hospital staff cared very little about my health situation b/c I was not their patient. I got close with some nurses that did care, but many doctors and some other people couldn't have cared less if I died on the floor of the hospital room b/c it was not their responsibility to look after me. As the stress got worse and my husband's situation went on my frequency got worse. My retention became awful and we won't even go into the  horror of the spike in pain levels. I also suffer from generalized anxiety disorder and as you can guess that showed it's ugly head many times during the situation.

 I ignored my body's desire for rest and did what I had to do to save my husband. When I went to see my pain management doctor a few weeks ago he looked me up an down. There I stood pale as a ghost with bags under my eyes and shaking hands. He had seen me a month and a half before when I had actually made a few positive improvements. He knew about my husband and the situation and was very compassionate originally about what was going on.


"What have they done to you?" he uttered. He was shocked by how bad I was doing. Usually my pain from IC is invisible but I had visible signs that my health was not good. 


I told him about the hours I was spending at the hospital, about how I had not taken a day off in over 50 days and about a few other horrific situations that had occurred that I needed to attend to. He was really upset. I am his patient and he wants to see me doing the best I can with a chronic illness, not walking in looking like someone who has never been treated before. He told me that I needed to start being somewhat selfish in my choices. He said that if I didn't I wouldn't be able to take care of myself or my husband. It was hard but I finally did end up taking two days off. Yes, two days out of over 60. One day I attempted to rest and the other was not a real day off b/c I spent it scrubbing the house for my husband's homecoming.


Now here I sit in the present. Having my husband home is obviously wonderful b/c I missed him so much. I do need to still do a lot for him (he can't drive), he does limited walking etc. but in between tasks I do get to rest a little. Only now I am realizing the true damage I have done to my body. I feel so sick from IC almost every single day. My muscles are weak. I am constantly exhausted both mentally and physically and also have symptoms flaring that resemble Fibromyalgia or Chronic Fatigue Syndrome. Right before my husband got sick my Uro told me I should see a Rheumatologist b/c some of my symptoms were beyond the scope of IC and he was concerned I may have some other illnesses too. I have not had time yet to have my appointment. 


I love my husband and if I had to do it again I would have done it all the same. He needed me 100% to fight for him and I didn't care what hurdles were in the way. Many people believe some of the actions I took saved his life. I am so happy he is home safe with me where he belongs. Nonetheless, I am scared right now about my health and my IC symptoms. He is scared too and wants to see me improve. Hopefully my husband and I can work together and both of our health issues will improve.


They say what doesn't kill you makes you stronger, but when you have IC, sometimes what doesn't kill you makes you weaker (physically speaking at least).

Always Be Thankful for Your Health (and cute pajamas)

When I was a little kid, old ladies used to tell me to be thankful for my health. Well, I found out sooner in life than I wanted to that those beloved little old ladies were right. Healthy people often take health for granted. I mean it is easy to. Sometimes when you feel good it is easy just to work, play, travel and live and not think about what would happen if you ever got sick. Part of it may be that no one wants to think about getting sick because it is depressing. If you are reading this and you are totally healthy, take a moment to be thankful.

Now, IC has definitely made me realize that health is something to be thankful for. I never imagined only a few years ago that I would be 27 and fighting with doctors and having a weaker bladder than Betty White. I never imagined that I would find myself curled up with a heating pads on nights when I would rather be out with friends. But nonetheless, here I am. IC is real. Thousands of painful conditions are real. Even though IC can't kill you, it can certainly make life miserable at times.

Yes, these are my real pajamas, aren't they cute?

Despite the fact that I have IC however, I am still very thankful for many things that make having IC just a little bit easier. It is easy to get wrapped up in being negative (which I admit on some painful days I do) but there needs to be a time to stop and look at the positive. Little blessings are hidden everywhere and as bad as you may think your life can be at times there is always someone out there some place going through something worse.

I may have IC, but I am thankful that I also have:

-Health insurance to lower the cost of my doctor appointments and medications

-A car to get me to and from said appointments

-A husband, family and friends who stick by me

-Ice packs, heating pads, cushions and other tools to help me when I am in pain

-Lots of cute pajamas to wear on days when I am too sick to go out (hey, just because I am in pain, doesn't mean I can't still look adorable hehe)

So well I do like to bitch and moan sometimes about plenty of IC related things (pain management issues, insomnia etc.) and plenty of non-IC related things (student loans, rude people, the high cost of living) today I will be thankful for the things that I do have.

I may not have a perfect life (who does?) or a totally pain free life, but I do have a lucky life with plenty of blessings.

And even though I have IC and it is clearly no fun, I am still thankful for the parts of my health that I do have. Some people can't walk, can't see, have trouble breathing etc. and I am very blessed that I don't suffer from any of those issues. 

So this Thanksgiving season take the time to be thankful for things: big things like your health and even the little things like cute pajamas.

I wish all of my readers and your families a happy and blessed Thanksgiving filled with lots of turkey and minimal pain flares for you IC gals.

I'll Never Apologize

I'll never apologize for writing this blog. I think this blog may freak some people out who don't suffer from chronic pain, but ya know what? I have decided that I do not care. It is important for this message to get out there.

First of all, no one ever apologizes to me, at least not anyone from the medical community. The doctors who didn't believe me 3 years ago never apologized for being wrong. The doctors who don't treat my pain correctly never apologize for the nights I have spent crying. The evil nurse practitioner who gave me the cream that made me flare certainly didn't apologize.

As for the non-medical, regular people who this blog freaks out, one part of me understands. I mean, before IC, did I ever think it was possible to have an entire blog devoted to a bladder? Of course not. But now as someone who suffers from a medical condition that so few people know or care about I feel totally different.

So yes, my blog is about a bladder. If someone has a problem with it, I say: GET OVER IT.

Yes, in this blog I say words like bladder and vagina. These are body parts. Body parts can be injured, inflamed or infected. It is a simple part of life and any mature person should be able to discuss it. If someone is grossed out about reading about vaginas and bladders, maybe that person isn't mature enough to be having sex, watching porn or looking at dirty magazines. It's almost like a double standard in life. When someone brings up a vagina in a sexual way, it's okay, it's not taboo. When you want to talk about a legitimate medical condition, people try to make you feel ashamed. Well, I am not ashamed, not me, not anymore.

When I think about it, I have always been kind of weird. I am like a freak wrapped in a Tiffany's box. I say this because on the outside I look totally normal: I really like hip clothes, getting my nails done and wearing makeup. When it comes to my interests however, I am anything but normal. I watch really strange indie flicks that many people find morbid. I like old music, ghosts and writing odd stories. I have always had an interest in dating men that many people consider too old for me. I have obsessions with 1950s movie stars, Jack Skellington and anything dinosaur related. I have had all of these quirks long before IC. 

So maybe I have always been kind of weird. Maybe this blog is a little weird. But maybe some of us are born to go against the grain. If everyone marched to the same, totally proper beat there would never be inventions, discoveries, new movies, cures etc. 

There is not a lot of control in your life when you have a chronic condition where the symptoms like to come and go at random.  Educating people about the condition and helping other women who feel like they are suffering alone gives me purpose and hope. If 100 people visited this blog and I was able to help just one woman with IC feel like she is not alone, then I am happy. I don't care if the other 99 people are making fun of me for having a blog about a bladder.

So this is my blog. Yes, it is a blog about a bladder. If you don't like it, just don't read it. I have no plans to stop writing it and I will surely never apologize for it.

"You are Running Out of Options" ??? (hmmm)

Hell hath no fury like a woman suffering from chronic pain. I think that makes a good tag line for my day. Like many of my readers, I have been through hell with many doctors. I have had doctors make fun of me to my face for "making up" pain. I have had more than one sexist urologist office try to give my appointment away to an old man because "I didn't look sick enough". A lot of these infuriating instances happened a few years back when I had no diagnosis of any type. Now that I have been diagnosed with FOUR painful conditions, you would think this madness would end. Nope, doctors are still finding ways to be mean to me.

I may be a doctor, but I have no idea how to help you.

I have one type of sharp pain no one can seem to get in check: not my uro, not my V/PFD specialist, not the primary care doctor who abandoned me etc. So I lived with this pain and do my best. Although many IC and V patients are treated successfully with a monitored amount of pain killers, I know better than to even bother asking for even one pain killer b/c I don't want to hear statements such as "you are too young for pain killers", "you are making up your pain for drugs" or my favorite "our office is in the ghetto so we can't let anyone have pain killers b/c we don't know who is really sick and who is selling the pills". Yes, all these things have actually been said to me over the years.

I have four treatments right now 2 oral medications (non-narcotic), a suppository and I am in physical therapy. While these things help some of my other symptoms, they do not help this one pain. So at a trip to the V doctor last week when I again complained about this pain, I was offered a new cream the doctor was just sure would be helpful. I sent in my order to a compounding pharmacy and as I researched it, I got excited that the cream may help. It contained a medication with nerve pain blocking qualities and I feel this pain is nerve related.

My "magical" cream comes and I am so excited to use it. Only five minutes after applying it I was in pain so bad and had a horrible reaction. I was crying and screaming and my hubby wanted to take me to the ER. The ER here seems to hate IC patients so I wouldn't let him. It was a hell-ish night and took me 12 hours to feel better.

I was very ANGRY that I was prescribed this cream. It costs $50. I have been with this doctor over 2 years and if there was ANY chance I could have a reaction I think they should have warned me. Compounding pharmacy medications do not come with the typical warning labels that regular medications do, so it is really up to the doctor to let me know about side effects.

When I call to complain about this medication and asked for an alternative treatment I was SHOCKED by how poorly I was treated. They have the NP (who I do not like b/c she has NO bedside manner call me). "You should stop using the cream", she tells me. Hmmm...YA THINK!!!!! I almost went to the ER b/c of the cream, clearly I already stopped using it. 

When I ask her if I can try the oral version of one of the medications in the cream (non-narcotic), a simple "no" comes out of her mouth. "You are already on one oral medication and we don't allow patients to be on more than one oral treatment at a time". I was baffled and in shock. I hung up and everything began to sink in. She was so full of it. I know some IC patients who are on 10 different oral medications and I am not allowed two??! (which would actually be three, clearly she doesn't even read my chart).

So I call back in tears demanding to talk to the doctor and instead I get her again. BLAH. "You really need to come in again if you want us to evaluate you for anything new". "I was just in five days ago I tell her. What could of changed since the doctor evaluated me then?" "Well, I don't know how to tell you this, but you are a complex case and you are running out of options." 

How on earth am I running out of options???!!! You have to be kidding me is what is going through my head. There are so many options I have never been allowed to try: trigger point injections, botox, narcotics, TENS and the list goes on and on). 

But in her mind b/c her magical cream didn't work and I could not tolerate Elavil, I am running out of options. I told her I just wanted her to know that I was angry he prescribed that cream. She said well, "I am sorry if you feel that way but there is no way we could have known. Many other women describe this cream as life saving." (They prescribe it to that many people and I am the first one to have a reaction?! Doubtful).

I told her I really want to talk to the doctor and he is supposed to be calling me back tomorrow. It will likely get me nowhere. I am starting bladder installations with my URO next week. I am also looking into new treatments and doctors in other states. 

 I feel really taken advantage of by this particular doctor's office. She kept insisting I had to come back even though they just saw me. I really feel like they just wanted more money and don't care about my health at all. The doctor will probably end up not helping me over the phone, I will probably end up just keeping my normal follow up appointment instead of scheduling a sooner one and I will probably just suffer in silence. But I am hurt, hurt to have ANOTHER doctor tell me "Hmmm what can we do??" when I am not being given a chance to try even a fraction of the known treatment plans. I feel abandoned. I want a doctor who actually cares about me and about curing and healing pelvic and bladder issues. Does such a doctor exist??


I realize this post is more ranty than most of my usual posts and is also kind of a downer and doesn't really have any inspirational or women's power message at the end like most of my posts. I apologize, but it is just one of those days. I guess sometimes we all just need to rant.

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.

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.

Maybe This Isn't As Good As It Gets

Don't be pessimistic, it's not your style.

So I recently found a new doctor and had a Urodynamics test done. The test was not very fun, but they say it can show the doctor a lot of information about how your bladder is working. I am scheduled for a hydrodistention towards the end of the month. I have heard of the hydro being used for diagnosis, so I was unsure at first why I was having one when I already have a diagnosis.

As I went through a lot of the forums and support groups that I belong to, I realized that a hydro also works as a treatment for many people. A hydro temporarily blows your bladder up like a balloon  so that the doctor can look at it better, but it also stretches it in the process. It will definitely cause some post-op pain for a few days after, but once you recover some people actually have reduced symptoms for a few months. Like so many IC treatments, the reduction in symptoms is not equal for all people. Some people may experience no reduction while others can live a better quality of life for six months or more.

I have kind of grown used to the status quo life I have with my IC. Some days I feel great, some days I feel like death. Usually a long and active day out or a night of cocktails will lead to a flare, so I pick and choose when I will do these things knowing that the pleasure of a normal life may lead to pain after. I had decided for a while that this is as good as it gets. That life with IC has to be like spinning a roulette wheel every single day. Sometimes there is no predictability. Once in a blue moon I will get away with a night out with out a flare, but wind up in a flare even if I spent most of the day at home with a heat pack. My type of IC has a lot more to do with muscle spasms and nerve issues than with food triggers, so I don't have many ways to control it food wise.

The thought of the hydro has given me the mind set that maybe this isn't as good as it gets. There may be a way to have reduced symptoms for a longer period of time. Although I will not enjoy the urethral pain I know I will have for the two days following the procedure, it is worth it for me to try. It is worth the gamble. If there is anyway I could have less symptoms during my upcoming bachelorette party, wedding or honeymoon that would be awesome. I know there is no guarantee, but I am glad I am trying. Most other doctors have said to me"this is just your life now". I had grown tired of trying new things. This new doctor and new idea have given me the drive to keep trying to have a better quality of life.

I have learned to do a lot of things through the pain. Sometimes I may even do things I shouldn't or do things that hurt with a smile on my face because I want to live not just simply be alive. But in the end usually even the most fun days end with me curled up with a heating pad at bed time. I thought that was as good as it gets, but I am confident now that it can be better.

The bottom line: never stop fighting for improvement, no matter what your condition. Stay strong. xoxo.

IC Rebel for a Day

So tomorrow I am going to attempt to be an IC rebel for the day. Like many people with IC my social life has suffered b/c of this illness. When I was in college I was the life of the party. I danced on stages, I went out several nights a week until 4 in the morning, I downed way too many cocktails. Having IC this lifestyle is no longer an option. IC is exhausting. IC limits what you are supposed to eat and drink. Having IC can sometimes feel like a full-time existence in itself.

At 27 I don't want to behave like a college student all the time anyway. It gets old fast and I have so many more responsibilities than before, but it would be nice to have the option on occasion. Sometimes I feel very limited and I hate it. I am often tired and cranky from the pain.

I know I have it good compared to some people with IC. I am able to write online which keeps me very busy. I also go out to dinner a lot with friends who never make fun of my seat cushion. And of course I have my wonderful fiance who likes to accommodate my  feelings and abilities when picking activities. I know there are some people who can barely get out of bed b/c of IC or pelvic pain so I don't mean to sound ungrateful for my life. I literally feel their pain. In 2009,  I was barely able to function or leave my couch for 3 months when I had undiagnosed Vulvodynia and pelvic floor dysfunction. 

Even though my life is better now than in 2009, it's still not the same as before my health problems started. I am comfortable in my new normal, but sometimes I miss my old normal even if only for a day. I miss the freedom of being totally healthy. I definitely took it for granted. 

So tomorrow I plan to be an IC rebel for a day for my best friend's birthday.  I am going to attempt to go out without my seat cushion. I am going to drink potentially acidic alcoholic beverages. I am going to dance. I am going to attempt to ignore any aches and pains I may get. I am going to stay out late. I am going to try with all my might to pretend that my pain doesn't exist.

Will I be in a huge flare on Sunday as a result? Most likely. Will I be exhausted? Definitely. Is it a stupid thing to do? Probably. Will it be worth it? Without a doubt.

IC and chronic pelvic pain  are here to stay for now since we have no cure, so there will be more bad days no matter what. I figure I may as well attempt to have a few awesome days along the way. I am proud of the new me and all I continue to accomplish despite chronic pain, but sometimes it feels good to know the old me is still in there somewhere.

99% of the time you will find me on my best IC behavior. Some of those days will be happy, some of those days you will find me crying on the couch with a heating pad. But 1% of the time I want the chance to feel like everyone else even if only for a few moments.

You Look Too Good- No Pain Pills for You

I literally get annoyed sometimes watching documentary shows about people who some how seem to have unlimited access to pain pills. These people don't need them and end up ruining their lives by becoming addicted to them. Meanwhile, so many women with IC need pain medications that they often can't get. I myself struggle to find proper pain management for my IC. I don't think many doctors sympathize with me b/c I am on the younger side and simply look "too good". 

Before I was diagnosed with IC I literally had actual doctors and nurses (who I no longer see of course) tell me that there was no way I could be in pain b/c I looked too good. Since when is pain always visible?? 

One really horrible symptom of IC that some women get is the feeling that someone stuck a jagged, broken piece of glass into their urethra. I mean seriously, picture it in your mind---image someone smashing a beer bottle and jamming it jagged side up into your pee area. IT WOULD HURT LIKE HELL. How could someone deny medications to someone who has to go through that? But unfortunately, it happens everyday. 

I wish there was some way to make our pain visible to others so that people would take us more seriously. So many women waste time and money going from doctor to doctor trying to find someone to take them seriously. 

It's not fair that we live in a country with so many available resources, but so many people are denied the help that they need. You would think if a patient is in pain to the point of tears a doctor would want to use any resource available to help that patient, but unfortunately that is not how it works.

What pisses me off most is that I know certain doctors who will give a laundry list of medications to people with back pain, leg pain, head pain etc. but will deny IC patients the same medications. Discrimination much?

Maybe someday some sort of technology will come out that can show our pain to doctors, but until then I guess all of us invisible pain people will continue to hear phrases such as "you look too good, no pain pills for you."

No matter how many times you are ignored or discouraged by a doctor never give up, keep searching for someone educated in IC who can help you. Good doctors are out there and waiting to help you. I myself am waiting to see a nationally known IC doctor in July. I will be sure to keep you all updated. Wishing everyone peace, love and many pain free days.

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.