Interstitial Cystitis

New IC Ramblings site! Bear with me!

Hello everyone!!! I wasn’t going to let the site go live until it was complete (it’ll probably take me another 3-5 days) but I’ve been hearing from some worried people that I shut it down without telling anyone!  I promise it’s not going anywhere…just needed a makeover and rejuvenation session.   Within the next week or so I will be writing a more official statement and introducing everyone to the new IC Ramblings features…including a shop and contact area!   Again, it is a work in progress so no judgey-ness aloud. Building your own website is tough enough when you have no idea what you’re doing! lol   Be well! Tali Keteri

10 years ago I was diagnosed with an incurable and debilitating medical condition. Today, on the anniversary, I celebrate life.

Ten years ago my life changed in ways I could have never imagined. Today, I share a little piece of that journey in hopes of healing the last remaining bits of me that have fought so hard to stay hidden and silent for all these years. Today, I share a secret; A secret that others may or may not relate to; A secret that people who have never experienced a chronic pain condition may never be able to understand.  Today, I acknowledge the worst of times and today I celebrate the anniversary of something that has enabled me to have some of the best of times. Today, I celebrate life.  Ten years and one day ago, I had reached the end of my rope in regards to life and the struggles it had constantly been fast-balling in my direction. I had endured countless diagnostic tests, met with numerous specialists and …

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

As 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 …

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 …

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 …

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

Ok. 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 …

Interstitial Cystitis Awareness Month 2014- Plans to help expand our efforts worldwideto

As many of you are aware, September is our official month of awareness for Interstitial Cystitis. Every year thousands of IC patients and their loved ones get involved to help spread the word about how this debilitating and difficult to manage condition affects our health and in turn, completely changes our lives. Last year my projects focused on making IC’ers comfortable enough with the details of this condition to speak publicly about how they envision themselves, their pain, and how others see them. It was a way for those having a hard time opening up to the outside world to express themselves in a personal way without it seeming quite so invasive. This year I’d like to focus on using our new found confidence with the intricacies of IC as the main driving force to help us get out there and make the public aware. We need public awareness. We …

Dr. Drew’s Apology to the Endometriosis & IC communities

If you’re looking at this title and wondering what exactly Dr. Drew and his Loveline sidekick apologized for, I must tell you that you missed all of the excitement from earlier in the week. Please take a moment to backtrack and read all about it here so that we’re all on the same page. All caught up? Ok. Now take some deep breaths and shake it out…maybe throw a pillow or some other SOFT object at the cat, or the husband, or eat an entire chocolate bar in one bite. Jump up and down or have a proper adult temper tantrum. Do whatever you gotta do to deal and bring down the anger. After all, anger only pisses off a pissed off bladder more and high levels of stress are never good for hormones or maintaining a form of sanity. Point is,  I know how hard that video was to …

Dr. Drew’s insensitivity on Interstitial Cystitis & Endometriosis; two debilitating medical conditions that affect a combined total of 95-100 million people worldwide.

Dear Dr. Drew…. I find your lack of empathy concerning seriously debilitating pelvic conditions truly disturbing and I have quite a few things to say to you about it all…wait…there are some people here who don’t know what went on during your Loveline show… Let’s cover that first shall we? For those who aren’t aware of the Dr. Drew Pinsky and Loveline drama going on in the Interstitial Cystitis, Pelvic pain, and Endometriosis communities today, I’d like to introduce you to a major issue within our medical culture and that, my friends,  is the issue of insensitivity. On April 24th 2014, Dr. Drew and his crew at Loveline took a call from a man in Florida who wanted to ask a question concerning his fiance’. (For those who have not seen or heard the clip of this call…start watching at timestamp 30:04 and try real hard not to throw shit …

Why it’s ok to let go of the people who don’t support you.

      Someone asked me the other day if I missed the friends I lost during my journey with IC and other Chronic Pelvic Pain conditions. Almost immediately, the bitch in me legit laughed out loud  and in the most sarcastic tone I could muster asked “why,  should I?”   I guess it’s a legitimate question for those who don’t know me well enough to not waste the time asking a question like that in the first place or for those who really do believe in that whole “once a friend always a friend” thing. What it comes down to for me is simply this, ( and I am so bold as to say that most people would do much better if they followed the same path) if you have to let someone go because they cannot, will not, or dare not make an honest attempt to understand, support, …

Why we can still be who we always were even though we aren’t able to be exactly where we thought we would be.

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? Below are the answers  I’ve received for IC Awareness Month daily topic # 24.  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 …

Frequent urination is common with chronic pelvic pain conditions. Some people have to urinate more than 30-50 times a day. How many times have you gone today?

SEPTEMBER 23rd  If you are an Interstitial Cystitis or Pelvic floor dysfunction patient who suffers with urinary 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 did it feel like you had to go?  Sometimes it feels like you spend an entire lifetime in there. Below are the answers  I’ve received for IC Awareness Month daily topic # 23.  I just had to do a 3 day log of how much I go. I thought it was 50-60 or so and it really ended up being over 90 times a day in a …

A thank you note for all who have stood by when things got complicated.

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. Below are the answers  I’ve received for IC Awareness Month daily topic # 22. MY HUSBAND AND FAMILY Dear C…Don’t want to name you in public as I know you’d hate that; your support has always been so quiet, unassuming and steady, and I know you would hate me to shout from the rooftops about it, yet I would not have got through the last year without it. We’ve been friends for ages, but it developed slowly, and if someone had told me a few years ago that when I developed a chronic illness you’d be the person who stuck by me the closest and was the most reliable, supportive, sympathetic and understanding, I’d have been surprised. …

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