I Have IC and I Eat Pizza

Never judge an IC patient by what is on her plate.

IC is never talked about enough openly, but when it is one of the top topics is the IC diet. The IC diet is real, the IC diet can help a lot of people, but it is important for the public and newly diagnosed people to realize that the IC diet does not help everyone. A lot is still unknown about IC. The more research I do, people I talk to and doctors I meet with the more I am becoming convinced that there are almost two types of IC. The first type seems to have a lot to do with what food and drinks are consumed and actually come in contact with the bladder. People who suffer from a lot of food triggers seem to suffer from this type and are greatly helped by the IC diet.

The second type, the type I seem to suffer from, has little to do with food and a lot more to do with nerve signal dysfunction and muscle dysfunction in the bladder and pelvic floor. I literally can get shooting nerve pain in my bladder that comes out of nowhere and makes me have to pee several times an hour.  Sometimes it comes without any triggers, other times I feel it has stress or hormonal related triggers, but rarely does it have any food triggers. It almost seems at times that I have Fibromyalgia localized to my bladder and pelvic floor. While this is still my own theory and not medically proven, I won't be surprised if someday more is known about it on a professional level.

I tried the IC diet once very strictly for three months. If you don't know what the IC diet is, it is a very low acid diet. I lived on water, pear juice, plain chicken, Alfredo sauce and vanilla ice cream. I even replaced my beloved chocolate with carob chips (ugghh so not the same). What did I get as a result of this three months of torture? No pelvic pain relief, no improvement in bladder symptoms...basically nothing. 

I have told more than one doctor who has diagnosed me with IC that the IC diet did not help me. The answer I was given? It doesn't work for everyone, so if it doesn't work for you, don't be on it. That is totally fine by me. I like pizza, chocolate and other banned IC diet foods. 

What Can't I Have?

Once I got off the IC diet, I did some testing with top IC no-no foods. I will not consume the following items as they seem to make my bladder feel weak and crampy:

• Orange Juice
• Cranberry Juice
• Dark alcohol (red wine, dark rum)

That's basically the extent of it. I can eat chocolate, tomato sauce and even buffalo wing sauce with no consequences. I will say that I do limit my intake of coffee and alcohol. These things are not the best for even the healthiest of bladders and people. I will never have more than one cup of coffee in a day. I also maybe only drink white or light colored alcohol on average maybe twice a month at a birthday party or nice dinner out. Gone are the days I had in college when I thought it was okay to drink three days a week.

The Benefits of Having IC without many Food Triggers:

• I have more of a selection available to me in restaurants
• No one notices me having odd eating habits in public
• I can have chocolate to make a bad day feel better

The Negative Aspects of Having IC without many Food Triggers:

• It's hard to control my symptoms. I feel like if certain foods were causing the pain, I could avoid them to avoid flares. There is not much I can do to avoid flares, it is kind of like a guessing game.
• I get a lot of shooting nerve pain from sitting for too long by having this type of IC.
• It seems to anger some other IC patients.

Let's explore the last bullet point. For some reason, some (not all or even many, but some) IC patients who live and die for the IC diet have lashed out at me for eating pizza or downing a drink. Some are concerned about my health. Others think that I am faking having IC (umm...hello, who in their right mind would pretend to have this bizarre condition?!). 

I think it is important for us all to remember that IC is still a medical mystery in a lot of ways. I don't have all the answers, neither do any of the other patients and doctors don't even have all of the answers yet. Due to the mystery factor of IC and how it effects no two people in the same way, it is entirely possible for one IC patient to be able to eat pizza while another can't. I think it is important for all IC patients or anyone with a mysterious female condition to support each other. We are all batting for the same team and everyone's situation has ups and downs. I have met people who need to stick to the diet strictly, but all of their symptoms are limited to the actual bladder. I can eat more freely, but I have nightmarish symptoms of my pelvis and urethra at times. Everyone has something and everyone wants a cure.

In my opinion, the IC diet was a great discovery and if it works for you, definitely stick to it. It can be life changing in a positive way for some people. My point of this post is not to put down the diet or anyone on it, but to reach out to the people who it doesn't work for so that they know they are not alone. Don't let anyone tell you that you don't have IC if you have been diagnosed with it just because you can eat a slice of pizza. Mangia!

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.

"You have severe symptoms"

Most people would be horrified if a doctored looked them in the eye and said "you have severe symptoms". I on the other hand was thrilled on Friday when a doctor looked at me and said "You have severe symptoms of IC and your bladder behaves in a way that is not normal for a 27 year old". I was thrilled b/c I have known this for a long-time and have been suffering on and off for a long time and it felt good to hear real medical professional agree with me.

Even though I have had an IC diagnosis for a little while now and a PFD/V diagnosis for even longer, it has been hard to get doctors to take my symptoms seriously until now. Many doctors would say things such as "you have IC  but it's not that bad" or "take Elmiron and you will feel better" (oh if only it were that simple).

Before diagnosis it was even worse. It's hard to pick the worst thing that has even been said to me. It's sort of a toss up between the ER doctor who said "You are making this up to get pain pills" (even though I was in 10 pain and told him that I wanted no pain pills only an answer), the ER nurse who told me I was "banned from the ER for all matters related to my bladder or pelvis because nothing is wrong with me" or the Urologist who called me a drug addict for being on 30 mg of Elavil (a mild old school anti-depressant with a max. dose of 150mg---not even a narcotic). 

After going through all that, it is like wedding bells to hear someone tell me I have severe symptoms. This new doctor has me scheduled for all the tests and procedures I have researched so hard but all other doctors denied me. This doctor gave me the proper referrals for physical therapy. This doctor knows that IC is a real illness. This doctor knows that IC chicks are in their own category and can't just be lumped in with 70 year old men who have slightly overactive bladders.

It's been over 2 years since the first time I felt a debilitating symptom of IC, over 6 years since the first time I had a urine culture come back negative for infection, but still have high WBC and over 13 years since my first severe UTI which only seemed to lead to other issues. But finally, after all this a doctor finally agrees with me that IC causes severe symptoms. So you see, what can be the worst words that one person could ever hear, can be the best for someone else.

10 Annoying Things About IC

IC is an annoying illness. It is annoying because we do not know exactly what causes it. It is annoying because the symptoms like to come and go as they please. It is annoying because there is not one official way to test for it.

Please enjoy this short Saturday morning list of 10 annoying things about IC.

IC is annoying because...

1. You can feel fine at 10:00 am and feel like going to the hospital at 10:00 pm or vice versa.

2. Just when you think you have discovered which foods make you flare and which foods don't a new culprit emerges.

3. It turns exercising into a guessing game. To flare or not to flare after a workout? That is the question.

4. You can finally be happy to have found a medicine that gets your frequency under control and then be saddened to learn that your grandmother's 85 year old BFF takes it too.

5. So many people have it, but no two people are treated for it exactly the same way.

6. Some doctors think it is real illness and other doctors are still living in the stone age.

7. It forces a young woman to be the only female and the only person under 70 in a urologist office.

8. You have to map out every rest stop on a highway on your smartphone in order to go on a road trip.

9. The medical community is only able to produce one "official" IC medication and then there is a shortage of it.

10. It has turned you from social coordinator into the "that chick who cancels plans at the last minute".

I hope this workout doesn't lead to a flare.

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.

#Winning?--What is Winning for an IC Patient Anyway??

My fiance loves the show Two and a Half Men. So ever since Charlie Sheen went on this "winning" spree, my fiance and some other people that we know tend to shout out "winning" whenever something good happens. This got me thinking about winning and what it means to an IC patient.

IC and pelvic pain can make a person lose a lot: lose the ability to do certain activities, lose a job, lose a relationship, lose hope. IC patients lose battles with doctors who are not compassionate. IC patients can lose hours that could be spent on something productive or fun crying and curled up in a ball in pain. But as much as IC can make us lose, IC can not take away our spirit to live.

Some days just getting out of bed is winning. There are definitely times when I am in so much pain I want to spend the day curled up under blankets hiding from the world, but I know this is not realistic all the time. I am 27 and hiding in a ball for another 50 years or more doesn't seem like much of a life---so I win when I get up anyway. I win when I keep going. For non-chronic pain people, getting up and moving is a natural part of the day. For people with chronic pain, it is a choice and making that choice is winning.

A lot of people may take things in life for granted. To some people winning may be defined as being the best at something. There are others who may define winning as being super rich or super famous. I simply define winning as being the best me I can be.

Every time I have a pain free hour I consider it winning. Every time I am in pain but find a way to accomplish tasks anyway I consider it winning. Winning is when you spend an afternoon being able to play with your children. Winning is when you are in pain and a loved one brings you a heating pillow or an ice pack without you having to ask. Winning is finding ways to modify your life so that you can enjoy it despite IC's symptoms.

Having IC is no fun whatsoever, but having IC does not make us losers. Having IC makes us winners who just have try a little bit harder to come out on top. Luckily, IC patients are strong and I am up for the challenge. #Winning!!

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.