We May Look Like You, But...

One of the main struggles of the IC gal is the "I don't look sick" factor. There are many illnesses and conditions out there considered invisible disabilities. Some are more recognized than others and sadly, IC remains one of the least recognized even though around 3 million American women suffer from it.

Us ICers often feel in a league of our own because we hurt more days than not and people tend to think we are exaggerating. It's not like we walk down the street shouting "I'm in pain" but when we need to tell someone we are in pain such as a new doctor, a friend who asks why we seem down, an employer who won't let us go home early or an extended family member who approaches us at a party we are sometimes not met with an understanding response. 

Would you be able to tell which friend has IC?

I have been reading some data lately compiled by the ICA, well-known doctors and other legitimate organizations. This data really backs up our pain level and validates how harshly IC can impact our lives. I am not going to make a works cited list or anything because this is my casual blog and not your college term paper, but rest assured these things you are about to read are all  true and not just some junk I pulled out of my ass. 

If you have IC, please consider showing this list to your family and friends. If you don't have IC, but know someone who does, stop judging them by their appearance and take this list into consideration instead. 

Characteristics of Many IC Patients

I have IC, I may look just like you, but... I'm depressed. I'm depressed because the pain I feel is so intense it impacts the activities I can and can't do.


I have IC, I may look just like you, but... I have just as low a qualify of life as a dialysis patient.  


I have IC, I may look just like you, but... I'm tired. I'm just as tired as someone who has MS or Lupus but for some reason you probably take people with those illnesses more seriously.

I have IC, I may look just like you, but... I can't stop peeing. I need to pee one to three times per hour if not more. If I don't go when I need to, I am in intense pain.

I have IC, I may look just like you, but... My joints hurts. My joints can feel just as achy as someone with rheumatoid arthritis. The only difference is people have actually heard of RA.

I have IC, I may look just like you, but...  I have trouble sitting, yes, sitting. When I sit too long in any typical chair my bladder, vagina and perineum hurt a lot. It feels like someone is stabbing me with a razor blade or a knife. I am much more comfortable sitting on a couch or better yet laying down.


I have IC, I may look just like you, but... I get brain fog and confusion because I am on so many medications. I can't stop taking these medications or I would be in even more pain.


I have IC, I may look just like you, but... I struggle with my weight. When I have too much pelvic pain, it can be hard to work out. The medicines I take may also cause me to lose weight or gain weight at an abnormal pace.


I have IC, I may look just like you, but... I had to give up wearing jeans most of the time because the material hurts my pelvis and bladder.


I have IC, I may look just like you, but... I don't sleep well at night. I am either getting up to pee or am uncomfortable because of the pain.

I have IC, I may look just like you, but...  I spend too much time and money on doctor visits. 

I have IC, I may look just like you, but... I have had to change jobs, cut back my hours or stop working completely because my crippling symptoms come and go as they please, they don't fit into the standard 9 to 5 mold.

I have IC, I may look just like you, but... My social life is nothing like it used to be. I have to cancel on plans when I am not feeling well. Some people have stopped inviting me places period.

These are just some of the many challenges IC patients may face. This illness is debilitating and devastating. Will you start to notice? Will start to care? Will you start to show more compassion? Or will you just keep ignoring it because your friend with IC looks just like you?    








 

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 It Feels Like to Have Interstitial Cystitis

This post is not pretty. This post is not sugar coated. This post is scary, this post is raw, this post is real. That's what IC is, it's scary, raw and real. That's also what life is at times. 

So what does it feel like to have IC? 

It hurts, it hurts like effin hell. Imagine someone taking a tub of battery acid and throwing it over your bladder when you least expect it, that's how it feels. When you have IC there can be so much pressure weighing on your bladder that it feels you are going to throw up and now and then, you do.

IC can feel like someone is taking a knife or a hot poker and stabbing you in your genitals over and over and over again. Some other days it may feel like a million pins are stabbing your genitals. Don't forget about the electric shock type nerve pain that can come with IC. Sometimes you may jump out of your chair or make a noise as that painful, electric pulse sears through your genitals, pernieum, spine and bladder.

Sometimes IC can make you feel like your pee or your genitals are truly on fire. There are very few ways to put out this fire. Medicines, creams, gels etc. Sometimes they work, sometimes they don't. IC can make it hard to sit for a long period of time because sitting causes pressure on the pelvic and bladder region making symptoms worsen.

If you have IC sometimes you will get the overwhelming urge that you have to pee maybe one, two or three times an hour (or more for some). You will stop whatever you are doing and RUN to the bathroom. If you ignore this urge b/c there is no bathroom available you will be in intense pain. Once you get to the bathroom you sit there miserable. Even though your body is saying that you MUST go, sometimes retention gets in the way and it can take ten minutes for the urine to come out. Finally, you have relief (maybe a lot of urine came out, maybe only a few drops) but not for long as you may be doing this same activity again in an hour if not sooner.

This illness can make you itch and have spasms in places you never imagined. These spasms can make it hard to walk from one room to another. Concentrating as your bladder spasms can be near impossible at times.

IC an make you fatigued all the time. Living in pain is hard. Living in pain can make getting up or taking a shower a challenge. Chronic pain wears the body down. You may see many people with IC doing normal things: shopping, working, driving, dining out. It doesn't mean they don't hurt. When an illness has no cure, you do what you have to do and smile to mask the pain. 


Having IC can lead to depression and anxiety. IC can cause you to need more time to rest and it can prevent you from being able to participate in certain activities. Friends and family may not understand. The lack of understanding can make you feel isolated leading to more depression and anxiety, it's a vicious cycle. Also, not knowing where bathrooms are when you leave the house can be a big trigger of IC anxiety.

These are the main symptoms, there can be many others. This disease is ugly. This illness is a monster. This illness wants to dominate and win, but you must refuse to let it win.

This post was not pretty. This post was not sugar coated. If you didn't like it b/c you thought it was too blunt, too honest or too gross then maybe you can't handle life. Not all parts of life are rainbows and sunshine. 

IC hurts. IC is depressing. IC is not pretty, but IC is real. 

I'm So Sorry...Not.

This is a note to all the haters in the world. All the mean, self-centered people who think bad things can never happen to them. All the uneducated, self-absorbed losers who always think their situations are the worst and have ZERO compassion to what anyone else goes through.

I'm sorry. I am sorry I don't live up to your high standards. I am sorry that I am tired almost all of the time. I am sorry that my version of life doesn't meet your definition of what life should be.

Do you think I really like taking medications all of the time? Do you think I like giving up money that could be spent on fun things to buy these medications? Do you think I like having to cancel on friends b/c I have a really bad flare? Well, I don't. I actually hate it, but I accept it. I accept it because I have no choice. IC has no cure, so I need to find a way to face reality and live with it. 

Just because you see me smiling, laughing or enjoying something doesn't mean that you should suddenly expect me to run the Boston Marathon or be able to work 90 hours a week. My body has limits and I know these limits. I shouldn't have to explain myself to you or anyone else. I am allowed to have "moments", everybody is. I have moments when I laugh at a joke or enjoy a movie or have fun at lunch with a friend. No one can be miserable all the time. When you see me enjoy something it doesn't mean that I am cured. You don't see me when ten minutes or ten hours later I am crying in pain. IC is a mysterious disease which not even doctors can fully comprehend so don't treat yourself like an expert just because you have met me or another IC patient once. 

Life with IC is a painful life. We know how to put smiles on our faces when we have to. We do the tasks we need to take care of family, friends and children so just because you see us doing something doesn't mean that we are not in horrible pain while we are doing it. If you are going to judge an IC patient maybe you should look in the mirror and judge yourself first. Your life is not perfect.

So please, keep your opinions about me and how I should live to yourself. I can assure you that me and every other IC patient out there are doing the best we can to put one foot in front of the other day after day. Some of us can work full-time, some of us can't. Some of us can eat certain foods, some of us can't. Some of us can exercise, some of us can't---the list goes on. But no matter what we are strong and we never stop trying to be the best person we can be for ourselves, our families and our friends.

I am sorry I don't fit into your perfect world. Oh, wait, I'm not.

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).

Things to Say and Not Say to Your Friend with IC

IC is not only difficult on the IC patient, but it can also be difficult on family members and friends. The family members who live with the IC patient are usually the ones who get to see the IC patient at her worst (it's a little hard to hide flares from hell when someone resides in the same apartment or house as you).

Friends on the other hand usually see us at our best. This can make it a little difficult to understand the illness since it is invisible. It may puzzle a friend as to why we have an illness or complain of pain when we "look so good". Other people may see us looking fine one minute and crying in pain the next and become scared or not know what to do. 

IC is a very complex illness. I have tried many a time and in great detail to explain IC to a lot of people and still some of them just don't get it. I don't actually blame all of these people, it is hard to understand. Many doctors don't even get it so it is not fair to assume every person we encounter should.

If you are the friend of someone with IC it is possible to show compassion even if you are having trouble fully grasping the condition. 

Here are some things that you SHOULD and SHOULD NOT say to a friend who has IC.

Things you SHOULD NOT say to someone with IC:

"Gee, you seem to get sick a lot"- Us IC gals find this very annoying. We don't "get sick a lot" we have a chronic condition ALL OF THE TIME. Some days our condition is mild and some days we can have horrible flares, but the condition is always there. If you have a friend with arthritis or diabetes, that person has the condition always. Think of IC the same way.

"Get Well Soon"- While you probably have the best intentions when you say this, don't. Get well soon is the kind of thing you say to a person with a cold or sprain. You want the person with the cold or the sprain to feel better soon so they can go back to being healthy and so that they will be healed the next time you see them. IC patients can't go back to being healthy or be healed. IC is a chronic condition with no cure. It is part of our life everyday, not something we can get over soon.

"Oh, you're out at this party, you must be cured"- IC can be a very painful illness, but since it is not going anywhere, we do need to get out of the house sometimes. Many ICers are forced to be homebodies a lot, which can lead to depression. Some social interaction is good for us. We may even be in pain while we are out, but we need to do it now and again so we live a full life. We also want to be there for the important milestones of the people around us such as a family member's wedding or a friend's birthday party. Just because we are not in a bed connected to tubes doesn't mean a magical cure has come upon us.


"Can I use your cushion?"- You may see some ICers take cushions places from time to time. These cushions help us to sit with less pelvic and bladder pain. I have had people ask to borrow my cushion (or even worse, I had someone TAKE my cushion when I went to get a soda and they started using it as a neck pillow). Our cushions are not a toy, an airplane neck pillow or something to make your back more comfortable. Our cushions are assistive devices which allow us to sit in a restaurant, drive cars and more. Messing with an ICer's cushion is the exact same thing as touching a person's cane or wheelchair---it is very inappropriate and disrespectful.


Things you SHOULD say to someone with IC:


"You can go first"- If you are with a group of friends at a restaurant or a bar and there is a whole bunch of you waiting to use the restroom, the greatest gift you can give to your IC pal is to let her cut you and use the bathroom first. We get it, everyone in the line legitimately has to pee, but your friend with IC will get shooting pains if she can not use the restroom. Saying "you can go first" means a lot to your friend both emotionally and physically.

"I understand when you can't make it"- Sometimes we have IC flares so bad, that we have to miss out on things we really want to go to like a dinner party or a movie night. We feel TERRIBLE enough when we have to cancel. If you tell us that you understand that we can't make it and you mean it from the heart, it means the world to us.


"I'm here for you"- Having a chronic illness can cause a person to lose a lot of friends. Not everyone wants to be around the girl who can no longer dance on table tops or go a mile a minute. If someone tells us they are here for us, we really appreciate it. Doing simple things for your IC friend like talking on the phone or planning a fun activity which your IC friend will be comfortable doing such as playing video games in your pajamas can really put a smile on your friend's face.









 

Women with IC are Awesome

Since IC is very painful at times, many of us, myself included spend a lot of time ranting and complaining. We complain about things like fatigue, spasms and all the things we can't do anymore. It is good for us to vent, but sometimes we end up sounding like sad, little puppies.

The reality is, although we are in pain, we are some of the strongest and bravest women around. We go through hell-ish times with very little help or answers from the medical community and we are still standing. A lot of people in our position would have given up a long time ago. So it is important for us to remember that women with IC are fabulous, intelligent and resilient. 


Here is a list of reasons why I think Women with IC are awesome:

-We have our own secret society of sorts and we stick together.

-We are bad ass enough to have been thrown out of a doctor's office or emergency room for standing up for our healthcare needs.

-We could win an Olympic gold medals for accurately peeing in a cup. (really, we could probably do it blind folded at this point)


-We have had doctors tell us "it is just in your head" and we kept searching for answers anyway.


-We can walk around and do tasks when we have to with smiles on our faces even if we are in 10+ pain. (most people would be curled up in a ball crying)


-We are very resourceful. We can turn almost anything into an ice pack or seat cushion if we really had to.


-We have extra compassion for others. We know that just because someone looks good on the outside, it doesn't mean that they feel good on the inside.


-We are brave enough and mature enough to talk about our bladders and vaginas publicly---a lot of people wouldn't be able to handle that.


-We can make jokes about our illness.


-We are grateful for things that a lot of pain free people take for granted. 


-We've had to reinvent our whole existence and we survived.


-We make pajamas, hospital gowns and other loose garments look good.


-We aren't afraid to stand up for other ICers and other people with invisible illnesses. 


-*We have IC, but we will never let it have us*-

Screaming "Monica"

As today is Halloween, you may hear many people screaming: screaming during a scary movie, screaming because a family member pulled a Halloween prank, screaming on a haunted hayride. Last week I heard a different type of scream, a much more bone chilling type. 

I started DMSO treatment last week for IC. If you don't know what this treatment is, to make a long story short a solution is put into your bladder directly with a catheter and then you have to lay on your side and rotate every few minutes. When you are done you go to the restroom and urinate out the solution. This is a six week treatment program, once a week, and I have only gone to one appointment so far, but I was excited to try it as I am hopeful it could help my symptoms.

This procedure was being done at my uro office, who I get along with, not to be confused with my V doctor who has me beyond frustrated. Since I was very nervous about getting the treatment my first time, I sat anxiously in my exam room waiting for the nurse. As I waited and played Angry Birds on my phone, it dawned on me that the receptionist told me that they only do this treatment one day a week and to try not to ever cancel an appointment b/c they need to fit a lot of people in. This means there were other real live IC patients just feet away from me in other rooms. I have never met another IC-er in person so the thought intrigud me.

As I continued to play my game, suddenly I heard screaming. It was coming from another exam room. 

"I CAN'T DO THIS ANYMORE!!!!!" a woman yelled, we will call her "Monica" for the sake of this post. "I AM SICK AND TIRED OF BEING IN PAIN ALL OF THE TIME. NO ONE LISTENS TO ME. NO ONE IS NICE TO ME. NO ONE HELPS ME." She also dropped several f-bombs and was making tons of noise and banging around.

A nurse started SCREAMING back at her. They fought for a while.


The nurse then paraded out in the hall and started screaming at other nurses: "I CAN'T TAKE MONICA ANYMORE. TELL DOCTOR SO AND SO I REFUSE TO HANDLE HER. SHE ALWAYS ACTS OUT OF CONTROL".


As I listened to this scenario play out, a few different things went through my mind:


1. Someone was getting in trouble at the doctor's office and it wasn't me. (I have had fights with many a doctor, but never at that level where the whole place could hear. This was no small office, this was a huge hospital.  I felt terrible for her, but I guess it made me glad to know I am not the only one who fights with doctors)


2. Did Monica have IC? Should I go talk to her? (I knew that I couldn't. I know that I would probably get in trouble for going near another patient's room and asking about her condition, but I wanted to so badly. I wanted to tell her that she wasn't alone. I wanted to tell her about the people who have treated me like crap over the years. I wanted to tell her not to give up.)

3. I hoped Monica's nurse wasn't the person who was going to be doing my procedure--luckily, she was not.  (I know this is selfish, but the nurse sounded very hostile and out of control and I was just petrified to have someone in that state of mind catheter me.)


The screaming continued, blood curdling screams. Monica was truly in pain. I wondered if someone was too rough performing an exam on her. I wondered if she was being denied pain pills. Eventually after a few more minutes of drama it got quiet, I think I heard someone get Monica's doctor. 


As I did the rotation part of my procedure, I had more time to think. It was just SO SAD that Monica had to go through that. We have so much available to us in this country and there are women screaming out loud in pain and still the medical community does not take IC seriously enough. I wish every doctor who has ever treated an IC patient badly could have heard Monica scream.


I guess Monica's scream was like the scream heard around the world for me. I am in a lot of online support groups and I read about other women's IC pain, but to hear another women screaming in a hospital the way I have screamed in my own home on my darkest day, it was like bringing it all to life.

As for the nurse, she said some horrid things to Monica. A part of me wishes the nurse could have IC just for one day (I would never wish it on anyone for real) so she could understand why Monica was so cranky. Many nurses and doctors don't have enough compassion b/c they can't feel our pain.


And Monica...I wish her well. I wish her more pain free days. I wish I could tell her that even though the hospital staff wasn't listening, I was.

Don't Stop Believin' (Me)

I feel like IC has made me flaky in terms of keeping up with social outings. Just a couple of years ago, I was the kind of person who you could ask two months in advance to meet you for a cup of coffee at 4:00 pm on a Wednesday and I would be there on time and with no reminder. I RARELY cancelled on anyone, ever. Even if someone was mean to me or if I didn't think an event was too exciting I would still show up.

Now b/c of IC I don't have the luxury of always being able to keep plans I make in advance. I feel scared that people I know are judging me and I am scared that one day I am going to wake up and no one is going to want to be my friend anymore because I am now one of "those people" who always cancel. The difference between the IC me and "those people" is that I really WANT to keep my word. "Those people" cancel plans at the last minute only for you to find out that they passed up your party for a better offer. When I cancel on someone I am likely at home on the couch with a heating pad.

Don't Stop Believin' Your IC Pals

I think some friends and acquaintances try very hard to figure out a pattern of how IC effects my social life. If you are reading this and you have tried to analyze the pattern, please stop. You will not find an answer b/c even I don't have the answer.

It is very hard for me to explain to people how random of a disease IC is. I swear on all that is important to me in this world that some days I can do a tap dance and other days it takes all my might to get out of bed and do what is required of me. Some days I have lots of energy and other days I want to go to the ER b/c I am in so much pain. 

It is really hard for an IC patient to figure out how she is gonna feel day in and day out because this disease is still so under researched and we still don't have all the answers that we need and neither do doctors. It is especially hard on me b/c I have no food triggers really. My IC is different than some, very triggered by stress and it also involves a lot of nerve pain. It's not like I can say let me avoid eating this orange and I will be fine today. It doesn't work like that for anyone and especially not for me. I can literally be fine one hour, happy and virtually pain free and the next hour be crying in pain. 

I think it is also hard for people to understand why sometimes I seem TOTALLY normal. I have to push myself sometimes to have a social life as I am only in my late 20s. Now and then when I am feeling up to it I do treat myself to a night out drinking or dancing. People may see me there and think I am nuts to claim to have such a painful disease, but what people do not see is that it takes me two days to recover from the outing. I may wake up with a throbbing bladder and aching muscles because of the outing and have to be within arms length of a heating pad and a bathroom for the next 48 hours. I no longer have unlimited energy the way I did in college. I have to make choices. If I know I have a friend's birthday party on a Saturday, I know I need to rest Friday night because if I don't there will be a good chance I am going to be flaring and miss it.

When push comes to shove, when something is super important to a friend I would go in 12 level pain if I had to. I would never miss a wedding or graduation or any other event that big unless I was literally in the hospital and wasn't allowed out. I will always push through pain to be there for other people for the most important times.

I just want people to believe me that if I cancel on meeting them for an ice cream cone or a cocktail it is not because I don't like them or because I am mean or because I am truly flaky...it is b/c this condition is getting in my way and I am doing the best I can day in and day out to learn how to live better with it.

Some days I do worry about waking up with no friends b/c they don't want to tolerate my IC scheduling issues. But I try to stay strong and remember that the older I get it is more important to have a few good friends then a ton of fake friends. I know if someone truly cares about me they will always take my word and forgive me when my IC makes me a drag.

So if you have a friend who has IC or any similar condition, know that she wants to be as active as possible, it's just that sometimes she physically can't. Don't Stop Believin' (in her).

Because Someone Has To

We need a female version of Lance, with IC of course.

I often wonder if people outside of the IC world think I am nutty. I mean really, why on earth would someone start a blog about a bladder disease? Do you want the short answer? Because someone has to. Women with IC are not represented. Prostate cancer has Lance Armstrong to speak for them. Parkinson's disease has Michael J. Fox. IC has no one, no one famous at least. There is not one celebrity out there willing to stand up and be the spokesperson for IC. 4 million Americans reportedly have IC, so you would think at least one of them would be a person in the spotlight, but so far no one is coming forward and offering herself up to be our leader. So until that time, regular people like me need to stick up for us IC gals.

Luckily, I am not alone. Although we lack celebrity representation, there is a large number of women not afraid to show their IC support on Facebook, Twitter, forums and more. Even though not one of us alone can have the same impact as someone like Lance Armstrong, together we can make an impact. We have a long and hard road a head of us, but what the public fails to realize is that having IC makes you tough. IC hurts. IC has no cure. People with IC fight everyday to live life, so we will continue to fight for media coverage, fight for awareness, fight for better medications, fight for a cure. 

No matter how much parts of the medical world want to ignore us, there are 4 million people out there in this  country that can support each other. So those of us who want to try and make a voice for IC patients everywhere are standing here together working to do the best we can to raise IC awareness with no funding, no charity walk and no celebrities. 

So that's why I blog about IC. Because someone has to. And I just want to take this moment to thank all the other ladies who have blogs and Twitter accounts and websites that fight for IC awareness. Together we can make a difference.

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.

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?