Why stepping away from it all is sometimes the only way to heal from within

youComeFirstAs many people in the Interstitial Cystitis community know, I have been an active voice in the IC and Chronic Pelvic Pain awareness movement for almost 10 years. When I was first diagnosed in 2006, after years of unanswered questions, debilitating pain, and feeling completely isolated, I began a journey that would enable me to help thousands of chronic pelvic pain patients feel less alone, more educated, and stronger as they began the very difficult and lengthy healing process. For me, those years were the most gratifying, aggravating, heartbreaking, rewarding, and life changing times of my existence and the experience has forever shaped who I am as a chronic pain patient and as a woman today.

Throughout the years I  happily put everything I had into furthering our cause because it truly made me feel good to do so, but as I got closer and closer to  my 30th birthday I found myself becoming more unhappy with what I had and had not accomplished for myself on a personal level. While I always had the support of those in the CPP community, I kept feeling as though I had so many loose ends that hadn’t been connected in my own journey and in turn began to bitterize my feelings about the work I was doing along the lines of advocacy. It was getting harder and harder to manage my online support group of 1500+ chronic pelvic pain sufferers, not because of the demands of the job, but because I found myself dreading the redundant nature of a very common situation. Where I once enjoyed logging on and discussing new treatment options with newly diagnosed patients or sharing my story with the sole intention of giving others a form of hope, I became increasingly frustrated with the whole process.In truth, the feelings I was having shocked me to my core. After all, I had worked so hard to inspire and support so many others who were struggling with the same issues I was also dealing with on a daily basis. How dare I be frustrated? How dare I even consider neglecting the people who often looked to me for support, advice, and answers? How dare I turn my back on people who so often feel alone in their pain when I myself had once been in that same situation. I became overwhelmed with the guilt of the feelings I was having and decided that it was only a phase, something that I needed to just push through in order to continue fighting the good fight. So I pushed on without ever taking a second to really consider the root of the feelings I was having.

In the months that followed, I continued the mission. Which simply meant– Write blog, create awareness project, manage support group, answer emails. Week after week I played the same role on repeat, pushing harder than I had ever pushed before as a way to atone for the feelings I had felt months earlier when I wanted to leave it all and walk away. I found myself completely focused on IC and why it has the ability to destroy lives and love the way it does and became engulfed with everything that had to do with “sick”. I spent every night after work discussing sick things with sick people about unmanageable symptoms and unhealthy relationships while feeling sick myself. Essentially, I was treating sick animals all day long only to come home and continue to surround myself with more sickly subject matter. My entire day was consumed in talk about unhealthy things and not only were words portraying unhealthiness coming out of my mouth but the symptoms of unhealthy were also being demonstrated by my own being. As the cycle continued, I began to focus solely on how terrible I felt and how in feeling so terrible, parts of my life had been taken away that I missed terribly. It was an easy cycle to fall into and Proved to be an even harder one to break. As the cycle continued to take its toll, it changed the way I experienced certain aspects of my life and changed the way in which I reached out to others. I quickly started to become something I had worked so hard to never be. Cold, bitter, victimized, and for lack of a better truthful word, pathetic. I was unhappy, unwell, and unmotivated and I knew t that moment something had to change.

I began to evaluate my daily routines and started to make notes of what specifically made me unhappy about each event I was involved in. I learned that I was feeling as though I had been plateaued since being diagnosed in 2006 and while I excelled at helping others, I had stopped doing things to help myself unless they were IC related. I had the realization that in trying to do everything in my power to manage my symptoms so that IC no longer controlled my life, IC ultimately was the only thing that had full control of every aspect of my life. I had inadvertently made it so that IC was the only thing that defined me. I had inadvertently made it so that my much needed hobby consisted only of activities that forced me to feel an obligation to others because in the beginning of my struggle before being diagnosed, there weren’t many people who had felt an obligation to help me.I had inadvertently made it that all of the other hobbies that I used to enjoy were pushed into a pile in the corner that had been forgotten and ignored. Ultimately, I had the realization that I didn’t want to walk away because I didn’t believe in the cause anymore or because I didn’t want to help people. I didn’t want to walk away because the people looking for answers and advice didn’t deserve it or weren’t worthy. I didn’t want to walk away because it was clear that making those outside of the chronic pain community willingly educate themselves on these conditions would be a life long battle and one that would not ever be easily won. I was walking away because I dedicated much of my spare time after I got diagnosed and learned to manage my conditions helping others and in turn forgot to continue to help myself. This revelation didn’t mean that I needed to feel guilty about these feelings as I once had but instead meant that I needed to change my focus for a bit with the hope that in focusing on things other than all things sick, I may be able to heal parts of me that were still able to be healed by my own self.

I found this eye-opening because when IC became a major player in my life story, it helped take away dreams of mine that nothing had ever been successful at taking away before. It destroyed friendships and career opportunities and became a whirlwind of chaos for the paths I had always wished to take. I harbored the disappointment and heartbreak about the so called “loss of dreams” deep down for years while constantly telling myself that those dreams were a thing of the past–that those dreams changed because I had a drastic life alteration when I was diagnosed with some very unruly and unpredictable incurable conditions. It wasn’t until I had these revelations that I remembered how important it is for the healing process to continue to do things you love. Even if you can’t do them the same way you used to or even if you’re unable to make them your main priority, it is imperative to incorporate positive things in your life. Even if life seems to hand you nothing but negative pissed off lemons, you must remember the things you love.   I believe with every fiber of my being that if you continuously focus on the bad and the pain while surrounding yourself with the unhealthy, you begin to decrease your mind and hearts ability to heal itself. It is proven that unhappy people have  a harder time healing…both from wounds and injuries to viruses, colds, depression, etc. When the mind is unhappy, the body is unhappy and when the body is unhappy all of the body systems are unable to support a healing environment thus driving a chronic pain patient deeper into the abyss of the pain cycle.

My moral is simple. It is up to us to educate ourselves on our conditions and to learn ways to best manage our pain, symptoms, and struggles in the ways that benefit us the most. It is also up to us to realize that when you surround yourself with the negativity that comes so easily with chronic pain conditions, it is easy to forget that through it all there are still things we are great at; There are still things we need to do to feel complete within ourselves. Ultimately, our lives are still our own to live as we wish.  Maybe these conditions make us alter the way we go about doing the things we love but we should NEVER, allow these conditions to convince us that pain is all we are. We should never allow our pain to take everything else we love away from us. Even if you can only jog 5 steps a day or can only make it through the first 20 min. of a movie in a theater before having to use the bathroom, it means we are still in control of something. If you love the movies. Go. Sit in an end seat and instead of being embarrassed to have to keep getting up to try to pee, be proud of yourself that you didn’t let it win. Sure, it’ll alter how we achieve our dreams from here on out, but who cares? I mean, really…who cares? Our lives are not for anyone else to live. They are our own and they can be nothing more than what we make of them.

Stepping away from the advocacy work for the last year has been a blessing for me. Am I in the best of health? No. Why? Because I over did it. Did I accomplish everything I used to dream about? Not yet. But have I started to remember why these were my dreams in the first place? Without a doubt.  Was it worth it? I give you a resounding hell yes! The truth is, I don’t care if I’m in a bit more pain than I was yesterday because for the first time in 10 years I was able to record a song in my studio. I don’t care if my usually managed flare is a bit more obnoxious and horrid today because yesterday I made and ate the best damn hot wings of my life. I enjoyed it. The pain will come and go–  It’ll wax and wane caused by something we knowingly did and sometimes it’ll wan and wane because this pain of ours simply can’t be trusted. My point is, many of us have learned how to live with it thus far but living with it shouldn’t mean surrendering our joy in the little things that we love.

For any unanswered questions, I’d like to make it clear that I’m not walking away from advocating for our awareness. I just needed some time to remember who I was before the pain and who I still am with the pain. I will continue to fight for us, speak to whoever will listen, and do my best to make others know they are supported but this time around, I come first. It took turning 30 to realize that putting me first isn’t selfish. It’s not wrong and it’s not cruel. If anything, it is enabling me to be able to do the things that I love to do longer and what better reason is there than that?

The best memes of 2014

This year for IC awareness month, I decided to implement a project/contest that would harness the every growing popularity of the “self made” meme. In the beginning, there was some confusion about how to go about making IC based memes for those not so social media/internet savvy folks but after some careful explaining and posting lots of Chuck Norris inspired memes for demonstration purposes, people were able to grasp the concept and run with it.   Here are the #ICawarenessmeme2014 submissions which I encourage you to share and re-post as many times as you see fit. All I ask is that you please continue to use the hashtag #ICawarenessmeme2014 so that we have a means of tracking its movement across the social media platforms.

jill meme but-you-dont-look-sick-he-said-thats-funny-i-replied-you-didnt-look-as-though-youd-be-this-much-of-a-moron-eitherdeception-i-say--15843 drink-more-cranberry-juice-said-no-one-who-actually-understands-the-mechanisms-of-interstitial-cystitis-ever--154c9 but-i-am-the-doctor-he-said-you-are-just-a-woman-and-clearly-know-nothing-of-your-own-body-this-pain-is-simply-in-your-head--305e5 -im-sorry-did-you-just-tell-me-that-theres-no-way-sex-could-possibly-be-painful-bend-over-hunny-well-start-with-a-brillo-pad-some-lemon-juice--b4255 i know you don't know meme christy again im-sorry-did-you-just-say-that-i-dont-look-sick-how-observant-now-come-here-so-i-can-demonstrate-the-anger-invisible-illness-can-create--92efb i-must-sit-this-way-until-this-incessant-burning-decides-to-cease-it-could-take-days-even-possibly-months-you-there-fetch-this-woman-an-ice-pack-9e949 jill meme1 Christy dr seuss christy larimer 3 bless your heart christy larimer 2 christy larimer keys christy meme jessica moran laura gambel 1 marion 2 marion 8 marion 9 marion h 1 marion h 3 marion h 4 marion h 5 marion h 6 marion h 7 marion more marion must-i-really-explain-againdear-when-im-flaring-your-penis-simply-feels-like-a-burning-rod-of-torturedo-try-to-not-take-it-personal-1f252 no-sir-you-cannot-yet-use-the-bathroom-i-must-go-at-least-15-more-times-before-i-can-attempt-to-move-on-with-my-day--8d5bf so-youre-telling-me-that-the-pain-i-feel-is-in-my-head-because-you-arent-able-to-realize-that-not-all-patients-are-the-same--d8825 the-bladder-is-like-a-3yr-old-it-throws-random-temper-tantrums-makes-a-mess-of-things-hates-authority-its-an-asshat-that-needs-discipline-and-loads-of-therapy-acdc1 yes-we-can-finally-leave-for-our-trip-my-special-seeing-eyes-have-scouted-every-public-bathroom-from-here-to-the-milky-wayone-must-be-prepared-3d6a2

I want to take a moment to thank everyone who took the time to make the memes and also those who continued to share throughout the month of September. By going about IC awareness in a somewhat comedic light, we were able to spread the word just a bit further than we were last year. My hope is to continue to expand our outreach as the years go on!

Tali Keteri’s Personal Writing & Critical Thinking Project for IC Awareness Month 2014

Last year I implemented a new kind of writing project that spanned the entire month of September as a way to help fellow ICers become more comfortable with talking about the many different emotions having a condition like IC can make us feel. I received such amazing feedback from those who chose to be involved and continued to hear from so many people who wanted to have another writing project in place for this year that I had to start planning a new form of exercise to keep us busy in 2014. After all, I could never willingly or intentionally let my fellow IC writers down! But, as much as I loved the daily thought topic project, I didn’t want to do the same thing all over again and fall into a routine and if I’m speaking honestly, as I usually do, there was also the fact that I didn’t have the benefit of feeling reliably healthy enough to be confident that I could make a writing topic post every day. I actually wasn’t even positive that I would be able to manage this at all. But, I have since started feeling just a bit more human and decided that better late than never is a really great way of thinking. So, that being said, I present my writing project for IC Awareness Month 2014.

Since I dropped the ball missed the first 2 weeks, I have decided to combine the prompts from Days 1 through 15 in one post and will then continue to post daily thought prompts for Days 15 through 30. If you want to go back and work on any of the prompts from the first 2 weeks please do and don’t hesitate to post your responses. If you’d rather just pick up from here on out, that’s perfectly ok too. It’s whatever you feel comfortable with and however much you want to put in. There is no wrong way to write in this situation. Do as many or as few as you’d like and share them with as many or as few of us as you see fit. The good thing about daily thought prompts is that they can be tailored to suit a vast group of people!

The following questions should help explain the project and clear up any confusion, should there be any. If you have any additional concerns feel free to contact me directly or through the comment section of this post and I’ll be more than happy to address them!

Good To Know’s

Last year you asked questions or gave us prompts, this year just looks like random words, videos, quotes, and pictures. What are we supposed to do with them?

Every day throughout the month of September will have a word, picture, video, or quote. I want you to tell me what that particular prompt means to you. Does it make you think of how things used to be before you were diagnosed? Maybe it gives you hope to face the future. Does a particular picture inspire you to reach out to others who are struggling with IC and other chronic pain conditions or does it make you feel angry? Did that quote just so happen to sum up your feelings since you rolled out of bed this morning? Maybe a particular day’s topic won’t make you feel anything and if that is the case, no big deal! I’m asking you to respond to the topics that spark a reaction knowing that every person’s answer is going to be different just as every answer is going to be special.

Where will these daily thought prompts be?

Days 1-15 will be in one post which I will include at the end of this question segment. The posts for Days 15-30 will be posted daily as an update to this post and on the IC-Network official fb page.  You can pick and choose which ones you’d like to take part in. You can choose to do them all, only a few, or none. The choice is yours!

Where should we post our responses

You can post them as comments on this blog or on the actual posts on the IC Network FB page.

What if we don’t want to put our names on our answers?

If you’d like to submit anonymous responses to be posted publicly you can email me directly at livingwithic@hotmail.com and I will make sure to post them for others to read with no names attached.

What is the point of this?

This will give us an opportunity to really look inside ourselves and express different emotions that may stay buried until something stirs the pot. By opening up about our struggles and strengths with this conditions, we offer honesty, support, and awareness, both to ourselves, fellow ICers and the outside world.

What if I don’t agree with one of the topics/prompts/ideas?

Then don’t do that one! I try to make the prompts as diverse as possible so that everyone can find numerous topics that appeal to them. If there is one that you don’t mesh well with, don’t judge those who do. Not everyone is the same and we have to respect that! In other words, be nice. I don’t play well with those who don’t play well with others who are going through the same struggle! Fair warning!!!

Fair enough.  Can we get started?

Without a doubt. Ready go…Don’t forget to dig deep. Talking about our feelings with those that understand really is a healing experience. The more you put in the more everyone can take away.

Daily Thought Prompt’s for September 2014 

September 1st-   Determination

September 2nd-  Old-tree

September 3rd-  “The universe is big. It’s vast and complicated and ridiculous. And sometimes, very rarely, impossible things just happen and we call them miracles”    The Doctor, Season 5, Episode 12

September 4th-  Isolation

September 5th-  fall-7-stand-up-8-bravery-picture-quote

September 6th-  

September 7th- Dismissal

September 8th-  We_Can_Do_It!

September 9th- 

September 10th- Better to fight for something than to live for nothing. –George S Patton

September 11th-  street-art-by-pejac-15

–This amazing painting is  by Pejac, a well knownstreet artist

September 12th-  Reminisce

September 13th-  I Will What I Want  <—click the link!

September 14th-  dr-who-quotes

September 15th-  Whether you think you can, or think you can’t. You’re right – Henry Ford

September 16th- 

September 17th-

Cold is the water
It freezes your already cold mind
Already cold, cold mind
And death is at your doorstep
And it will steal your innocence
But it will not steal your substance

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand

And you are the mother
The mother of your baby child
The one to whom you gave life
And you have your choices
And these are what make man great
His ladder to the stars

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand

And I will tell the night
Whisper, “Lose your sight”
But I can’t move the mountains for you

Lyrics to “Timshel” by Mumford & Sons

September 18th –  enhanced-buzz-10217-1397079009-4

Clearly these are empty because we’re not there yet! Check back daily for the new topic!

September 19th-  

September 20th- 102661331_Munch_265471c

September 21st- “Everyone has disabilities. Mine are just more visible”  — Jim Abbott

September 22nd-

September 23rd-

September 24th-

September 25th-

September 26th-

September 27th-

September 28th-

September 29th-

September 30th-

Tali Keteri’s 2014 Interstitial Cystitis Awareness Month Social Media Meme Contest

   Tali Keteri’s Social Media Meme Contest

-Supported by the IC-Network and the official IC Awareness Month campaign


The above meme was created by yours truly!

      Last year I had the privilege of running and contributing to the writing, poetry, and blogging portion of IC awareness month for the IC- Network. This year, I decided that since the majority of time in September of 2013 was spent helping fellow ICers become more comfortable when writing or talking about the intricacies and personal sensitive nature of this condition, we should use our new found confidence to tell our stories to those who have no idea what IC is or what it entails. We need to spend our time creating awareness tactics that interest those people who would normally have no interest at all in something that doesn’t directly affect them. What better way to do so than to use a form of media that most can understand? I have spent a ton of time researching and monitoring what forms of social media go viral the most and have spent even more time developing different concepts for ICers to use during our awareness month to help get the word out. It is undeniable that memes have become commonplace in our social media outlets and that because they are easily shared, it is extremely beneficial to those in our position to use our own personal messages to create IC related memes that may prompt the outside world to put their best ear forward. (That sounded weird right? “Best ear forward”? I mean, I guess I feel that ears are like boobs. One boob is always bigger than the other (don’t be offended, it’s just nature)and I feel that one ear usually hears better than the other, if only in our mind… What? Our bodies are complex vessels. And clearly, I think too much… Anywho, I am excited to put this meme challenge on the table for those who want to use their wit, humor, bitterness, anger, and annoyance with this condition to have a little fun while trying to get the “outsiders” involved. I can’t wait to see what we all come up with.

Now on another note, I would love to make a contest out of this and offer up some prizes to the best IC awareness memes of 2014. I’m still working out the logistics of this but I would love to crown the memes that are the most :

publicly influential, witty, positive, bold & personal!!!

So, get creative.

Get ridiculous.

Make a statement.

Don’t be afraid to use shock value.

     But, just remember, the point is to be able to make these go viral. We want people to be able to share them over and over, either because they can relate or because they think our struggle is funny…or maybe because they don’t believe us…or maybe because they do and they had no idea that something like this existed but the funny cartoon in the meme made them need to read it and in turn prompted them to need to Google IC and its symptoms. It’s all about the buzz that we have the power to create. So remember, regardless of why or how they choose to share it, a share is a share is a share, and not everyone is going to understand this condition right off the bat. It will take time. But in order to explain how IC works, we need an audience willing to listen. We need to focus on one thing at a time.

Let’s create an IC interest..

We can teach them about it as we go.

Make it catchy

Make it real

Make it raw

Make it YOU

     IC may have changed a lot of things about all of us, but we are still who we were before the pain started. It’s up to us to keep that part afloat.

Meme-esque frequently asked questions and concerns

What exactly is a meme?

A meme is:


  1. A cultural item that is transmitted by repetition and replication in a matter analogous to the biological transmission of genes
  2. A cultural item in the form of an image, video, phrase, etc, that is spread via the internet and often altered in a creative or humorous way.

Great, but what IS it?

     Here are some examples of popular memes you may have seen floating around the vast

webo-wildwest-ophere…I mean internet. (Don’t judge me. I have a bad habit of renaming things..mainly for my own amusement)

chuck norris



Ok, but how can we make this “meme” situation a useful resource of Interstitial Cystitis Awareness Month?

     Well, we can do this by simply tailoring the “tag lines” on these images, videos, gif’s. Etc., to fit our needs. As I have stated numerous times before, this age of social media requires us to think about awareness a bit differently in the sense that we have to change our approach to appeal to the masses. That being said, people love to share things on social media that make them laugh or even things that make them feel somewhat awkward. We have such a great opportunity to make them awkwardly laugh or even shock them so badly that they have to share with others because they can’t believe what they’re reading. I’m not trying to desensitize our issues, I’m simply saying that we need to use social media to our advantage and in order to do that we need to grab the attention of people who know nothing about our struggles. The best way to do that is to put it all out there. If they laugh at it, who cares? At least they read it and maybe shared it. That’s a few more people Googling IC or IC awareness month than there were 4 minutes ago. That is the goal. This is not the time for sensitivity!

Say we do want to take part in this challenge, how do we even start?

      Because memes have become such a staple in the internet world it is very easy to design your own. But, if you’re new to the whole concept of making “the meme” here is the best website ( in my opinion) where you can try your hand and make some really effective sharable memes.

  • www.someecards.com – I think this is where the majority of people make their memes. They have a great variety of old school, cartoony, and vintage images to choose from. All you need to do is pick a picture that suits you and add the words..oh, and share with everyone. All the time.
  • There’s also Rotten E cards if you’d like to try another site
  • Here’s an IC meme I found while searching on the site- I’m unsure of who made it originally but thanks a ton for such a great way to use humor and wit to expose the outside world to our pain.    i know you don't know meme

What the hell do we put on these things?

     Our stories.

     Our feelings.

     In as few effective words as possible.

     Example: you’re having a bad day because you dropped your coffee?I got up 26 times in the past 4 hours      to try to pee and still look 6 months pregnant from the bloat

     Your night was bad last night? Did you have to get up 26 times to try to pee? I thought not.

Do we have to put our names on them?

     No, of course not. Every year I only ask people to divulge as much as they feel comfortable. If you want it      to be anonymous but still want to be in the running for the contest you can email me directly at           livingwithic@hotmail.com so that we will be able to keep your post anonymous but keep you updated and      involved in the running for the winning memes.

How many IC related memes can we submit?

     As many as you’d like. The more options we have, the more shares we get, and the more shares we get,      the more awareness occurs. Feel free to expand and post as many as you’d like. Also, feel free to post          where ever you’d like.

Such as?

     Your own personal Facebook, IC related facebook groups, Twitter, pinterest, IC-network , IC Ramblings,        news stations, etc. If you think you can post somewhere where people will willingly pick it up, post it. And      then post it again. This is the month we’re allowed to be annoying and obnoxious. It’s all about us. I mean      really? What’s the worst that can happen? They’ll say they’re not interested? That’s a better chance then      taking none at all. Keep talking.

Fashionably Late: I needed 14 bathroom breaks. Here’s to September. IC Awareness Month. 15 days late.

7117816429_3200e417f3Ok. I know that I ranted a shit-ton about all of the projects I had planned for this years IC Awareness Month and never posted much of anything about anything. This is truly bothersome as I never, ever, EVER slack in September…especially when it comes to this even  But unfortunately, this year had some medical surprises in mind for me ( Not IC related- not even a little, believe it or not) that I couldn’t have predicted which knocked me off of my game completely. I have been less than useless for the past month and a half which has inevitably screwed up my time management. It  has been quite unfortunate. I feel as thought I’ve let many of you down and for that I apologize. For those who are wondering what is going on with me I promise I will touch base on all of the details later on in the month but I want to take the time to focus  (while I’m physically able) on the importance of spreading the word about IC and the hardships this condition causes during this very important month that is directly dedicated to all of us who suffer with these particular pelvic and bladder issues.

That being said, the next few days I will try to make up for my severe ball dropping as far as IC Awareness month goes and I ask that you all try to be as understanding as you can.

After all, we’ve all been there right? Sometimes you just don’t feel well enough to get out of bed, let alone write, think, be creative, or act human. Be nice. I’m sure you’d want the same for you if the situations were reversed.

The next few posts will consist of the projects I had wanted to implement for September 1st and ultimately the projects that I was unable to get off the ground due to feeling so terrible. Yes they’re late. Yes it’s already September 15th. Yes they’re STILL important. Take part if you will, stand back if you won’t. But don’t hate on those who play or use their inner emotions to express all the words they feel they need to say.

This is our month.

Let’s make it count.

Check back for new posts and challenges daily from here on out!

If you want to get involved in other ways please don’t hesitate for one minuscule second to visit the official site of  IC awareness month and also the organization which I have able to contribute to for the past 5+ years with heartfelt support and understanding.

Even though we struggle. The IC community is strong. And that is truly something to hold dear.


Mirror, mirror on the wall…


Your bladder crawls out of bed in the morning, makes its way to the bathroom to brush its teeth and relieve itself and catches a glimpse of itself in the mirror. What does it see?

Is it male or female…is it broken and bruised? Does it have scars yet is still beautiful? Tell me what it sees.


Below are the answers  I’ve received for IC Awareness Month daily topic # 19.

My bladder is female. If she saw herself in the mirror she would be appalled. She is red, raw and covered with tiny pinprick cuts. She is hurting but any cream, any ointment will only make her feel more sore.

She is clutching the sink, struggling even to keep looking at herself as she is so horrified by what she sees. She is disgusted with herself. She used to be helpful, to have a purpose. She has now, over the past year, become a torturer, a sadist; she lives inside a 35 year old single mum with two small children and a life to lead and every day she hurts and torments her and makes her life almost unbearable.

But it is not her fault, not really. She only gives out pain because she is in pain herself. She only hurts because she is hurt.

What she wants, more than anything, is to get better. She just wants to be ‘normal’. But it’s been so long, she can barely remember what ‘normal’ is.

Mine sees an organ who has a hard time making friends and tries far too hard to fit in. It easily makes it awkward for its neighbors to associate and identify with it resulting in a serious lack of cooperation. My bladder is most definitely a woman who grew up way too soon. She longs to do whatever it takes to get past the mistakes of her past and heal…no matter the cost. She also knows that it’s not all about her. This pain comes from the other organs she surrounds herself with as well and until they can all learn how to work together there will always be turmoil. She sees strength. She sees dedication. She sees a challenge. I think she also sees that she’s a blonde with a big mouth and a penchant for stirring things up before wrapping up the self assessment mirror convo and going the hell back to bed…

I see mine that’s broken and a disappointment to her husband. She is a loner but tries to put on a smile even in pain. The once go getter that wasn’t afraid to have her plate full!

Mine sees a very pregnant woman with a severe uti. She has been in labor for years with the baby crowning. Lower back & dragging feeling in the legs. Heaviness with occasional stabbing, and/or electrical shocks. Thanks to the related diseases she also aches like she has the flu.

 It sees a female, broken bladder in severe pain that never wants to urinate again for fear of horrific vag. burning. (I’m up at 4am to prove this theory).

She looks into the mirror and she sees what used to be a beautiful soul. Someone who’s always tried to help others, always laughing and making others laugh. Someone who cared and put others first to now being hopeless, lonely, depressed, secluded and aged. She’s young, but feels like she’s in a body well over her actual age. She hurts constantly. She cries out in pain and questions “why me?’. There are times when she’s hopeful. Hoping for help, for relief, for a day when she feels like her old self again, but she lowers her head in pain and feels helpless instead.

 Mine is a beaten and battered woman. Her cuts are raw and every muscle bruised. She feels abused and her only temporary relief are Percocet that are rationed. She is ashamed of her image and prays for a man who understands.

 I Have always felt that my bladder was seperate from me. My bladder is evil and angry. My bladder screams and twists while wrecking everything in me. My bladder is a spoiled child and he will pitch a fit until he gets exactly what he wants.

my bladder sees a mother of 3 small children who becomes tired and is in chronic pain

 My bladder is a broken down female who’s been bullied around too much and self-inflicts pain. It prays for a cure, but it also knows that it has to accept that things aren’t going to be going very well, that pain will be a constant. Once it accepts that like it would a lost limb, it can move on.

 She’s a diva, used to being pampered and soothed. She’s content as long as she stays warm and relaxed and gets her happy pills every morning and night. But if something slips and her delicate balance is unsettled, she gives me a swift kick with her Manolo Blahnik. I’ve sacrificed a lot to keep her happy, but feel damn grateful I’ve been reasonably successful so far.

It is sore and worried about what the day will bring? Will there be clean or even a bathroom where I teach? Will I find someone to watch my class song can go? How will I get through the day like nothing is wrong again? It is weak and wants love and care. It feels misunderstood. My DOCTOR just suggested hydrodistention again AFTER me telling HIM that it isn’t recommended now by AUA. Why doesn’t HE know this???!!!

 My bladder is female. She looks sad. She has held all these feelings of being hurt and feels pissed off about it. I’m working at releasing the feelings of being hurt and pissed. It is but one step in my healing.

She” looks in the mirror to see a reflection of one that looks so tired and has aged 10 yrs in  the course of year and a half. She looks dull and lifeless. “She” is battered and scarred…

All it can see is a reflection of me. A reflection in the mirror of the woman on the bed crying in tears of pain for her 3 year old looks at her and says “is mommy sick again?” My bladder sees how it has at times broken down this woman to nothing but to nothing but pain and misery. My bladder is never content and wants just to be “cured.” It cannot even look at itself in the mirror, all it sees is the bad and the ugly. Why isn’t this woman treating me? Why am I in a body that cannot cure itself? My bladder would see ME a woman and a warrior that fights everyday of her life for a cure, a woman that get’s off that bed, and gives a children a kiss on the head and says “mommy will be alright, don’t you worry dear, mommy will be there soon.” Our bladders see US in the Mirror, no matter the battle wounds we are all IC Warriors, fighting for a cure!

My bladder is so hideously ugly and ripped in pieces that it breaks every mirror it sees. Mirror mirror on the wall, who is the bloodiest of them all? Gee, that is a kind of negative attitude, isn’t ‘it?

My bladder is female. It sees the pain she causes several times in the early hours of the morning. She is broken and does long to just feel normal again. She sees the pure misery she puts the young 30 yr old woman through each day on top of the living hell this woman goes through daily due to related illnesses and mental illnesses. She wishes she wasn’t the one thing that makes her life even harder on top of the wreckage of abusive relationships and loneliness. She thinks if only I could help her body function better to help her out. It wouldn’t be much but at least it would be something.

 Mine sees a much more relaxed and happy self since starting IVC ( a parsons cocktail!! ) treatment, less tired as it only wakes up twice in the night against 7-8times a year ago,I have a happy, happy, Miss Bladder now, long may it last.

These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!

Daily topics for the final days of IC awareness month 2013

And now ladies and gentlemen, I present to you again….The daily topics for the final days of Interstitial Cystitis Awareness Month.


September 22nd–  Who has stood by you the most through your struggle with IC? Write a thank you note to the person or people who have helped and supported you the most throughout this journey.

September 23rd–  If you are an ICer who suffers with frequency, how many times have you peed today? It may sound ridiculous but it goes to show the non-Icers how stressful, time consuming, and redundant a task such as emptying one’s bladder can be. Most people couldn’t fathom having to “go” more than a few times a day let alone upwards of 20-30 or more. This is to give an idea of what it’s like.  How many times does it feel like you had to go?  Sometimes it feels like you spend an entire lifetime in there.

September 24th–  What are some things about you that the IC hasn’t changed? We often times talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn’t taken away?

  • I am still brutally honest…maybe even more so now. I am sometimes an asshole…I am outspoken and not ashamed of much of anything.  My bladder hurts and sex can be tough ..so what? They’re judging? I don’t give a shit. It’s not their problem. It’s mine.  I do not embarrass easily…and I still can’t stand those who are ridiculously sensitive about content. For instance.. “Oh no…she said the word vagina…burn her at the stake!!!”Seriously? Bugger off. I have no problem realizing that people who go against me aren’t supposed to be in my life. If they are meant to be there they’d be supportive. Bye bye if you’re not of the latter. I am a perfectionist yet I am terrified at failing so much to the point that sometimes I don’t even try. I am still a singer. I am still a writer. I love hard. I can read anyone by their eyes and what they got goin on behind them. I have saved myself a lot of trouble from that talent. I can read lips…very well. So don’t talk shit about me in the corner. If I have my glasses on and I catch ya…I’m callin your ass out. I will forever stand up for the underdog and I won’t ever judge those based on the things they do unless they knowingly do fucked up things. I relate to people in the hopes that people will attempt to relate to others. I still rarely trust anyone and believe heavily in energy and mind over matter. Yep. I ain’t changed that much at all…

September 25th-  For those of you who have had great experiences with your doctors, healthcare, physical therapists, acupuncturists…treatment providers in general. Please share who they are, where they’re located, and how they helped you. So many people can’t find good health care providers in their areas and end up giving up. Maybe some of our lists can help those out who really need some good quality care!

  • Dr. Robert Echenberg- PA. Womens sexual and pelvic pain specialist. This man saved my life. He’s a genius and is responsible for many successful treatment plans for ICers. http://www.instituteforwomeninpain.com/
  • Juliette Aiyana acupuncturist and herbalist- NYC. She’s my go to for acupuncture and natural herbs in the city. And..she has plenty of experience with IC and chronic pelvic pain.     http://www.amazinghealing.com/

    Deb Smith- Acupuncturist, Herbalist, NAET practioner- PA. Deb was my first acupuncture experience and one of my favorite people in the world!  Her NAET treatments helped tremendously and she formulated acu points specific to IC and CPP. I do believe that many years ago when I was getting off all the meds and trying to learn to manage my IC naturally and non chemically she was the one that got me there.   http://www.feelgoodacupuncturehome.com/index.htm

    Isa Herrera and Renew PT- NYC. By far the best physical therapy for and ICer there is…in my opinion anyway. I believe that everyone should own her book … Ending Female Pain. It is my bible. She does an intensive week long program for those not from NYC…it’s worth the money!!!    http://renewpt.com/


September 26th–  Write an informative article (proper research involved!) on what studies have shown about it.

  • if you don’t know where to start…Use google…do research!
  • Ex. There are a few different types of known IC. Hunners, Ketamine, and IC without the hunners. Elaborate.   There is a strong connection between pelvic injury and IC. Elaborate.

September 27th– If you had to dress you bladder up to make an impression for the general public…what would it wear?

  •  Mine would be- 5 1/2 high black stillettos, a super sexy low cut red dress, fishnets, and some uber shiny jewelry. Why? Because it’d attract attention of the uber fancy people who couldn’t fathom having a chonic illness. It’d enable me to get their attention, pull them in, and then command the room.

September 28th–   What procedures have you tried? What treatments?  What supplements? What’s worked for you and what hasn’t? Use this as a way to see if there’s anything else out there that you didn’t know about. You’d be surprised how many different things other ICers have tried that wasn’t common knowledge. Have an open mind! And no judging others by what they tried if you don’t agree.  Everyone does things that they think are best for them. It’s not up to us to ridicule them for it!

September 29th-  What do you think caused your IC? Did you always have it? Did it come along after an accident or an infection? When did it first present itself?

  • My IC kicked into overdrive after an uber bad UTI in 2003. I then managed to get it controlled a bit (never knowing it was IC) until I had 2 laparoscopys and my appendix removed. It continued to spiral downwards after that. I saw over 20 doctors trying to get a diagnosis and had numerous procedures. At the end of it all I think it was a combo of heavily competitive gymnastic training at a young age and pelvic floor damage. I also had vulvar nerve damage from some accidents as a child and that contributed as well. I know that all of the antibiotics I was on for most of my young life completely screwed the yeast situation in my body and until I managed to control that nothing that I did for my bladder or pelvic area would hold. I’ve learned that it’s a total body process. You can’t fix one thing without fixing the other things. It doesn’t work that way.

September 30th-  What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers.  What methods of awareness can you use to show the public this is real?

  • Just because September is our designated awareness month doesn’t mean that’s the only time we should be spreading the word.  It’s a life long process when you have an incurable condition and it’s up to us to make it known!

Those are your Final day’s of September daily topics!  You can take part in as few or as many as you like. Remember, don’t post your answers/responses until the day they’re actually due…September 7th topic on September 7th and so on…if you’d like your answers to be submitted anonymously email them to me directly at tali@icramblings.com and I’ll be sure to post them as such! I will be posting the topics day by day as well on the IC awareness month page, the IC-network, Facebook, and my page.You can post your responses on any of pages listed above or you can email them to me as you go. Whatever is easiest for you!

I explained the rules more in depth in an earlier  post for anyone who has just stumbled upon this project! Please feel free to refresh yourselves a bit and share with others so that everyone participating is on the same page!

Any questions, don’t hesitate to contact! I want this to be a creative and fun experience for all who have chosen to participate!