Saturday, June 25, 2011

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.

Saturday, June 18, 2011

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.

Saturday, June 11, 2011

#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!!

Friday, June 3, 2011

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.

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