Herein lie some very important facts. Yes. Facts. Proven. Tried. Medically accepted. Facts. The dictionary definition of fact is simply this:
It burns when I pee…Might as well tell you how I really feel. I'm just sayin.
15 Aug 2011 41 Comments
in Chronic Pain Support, Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Interstitial Cystitis/IC, MTV True Life, Pelvic Floor Dysfunction, prescription meds, relationships, Therapy, Vulvodynia Tags: anatomy, Chronic Pelvic Pain, Conditions and Diseases, Dyspareunia, Health, IC, Interstitial Cystitis, Interstitial Cystitis Awareness, MTV True Life, Muscle, Pain, Painful Sex, PBS, Pelvic floor dysfunction, Pelvic pain, PFD, Spasm, tali, tali keteri, Vagina, Vulvodynia, Women's Health
12 Jun 2011 1 Comment
in Chronic Pain Support, Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, Vulvodynia Tags: amazon, book reviews, books, chronic pelvic pain literature, Conditions and Diseases, CPP, Health, IC, IC books, Interstitial Cystitis, Pelvic floor, Pelvic pain, tali, tali keteri, Urinary bladder, Women's Health
As many of you may know (or may not know), I have been involved in the Chronic Pelvic Pain community for many years in many different ways . I spent the first year or so after I was diagnosed with the plethora of conditions I now wear on my sleeve at all times learning everything that I possibly could about these debilitating illnesses and any types of treatments that were out there. I bought every book that I could afford, took the best parts from all of them, and created my own theories and regiments that I felt fit my conditions in the most personalized manner. I have read some amazing CPP literature over the years and I have also read some CPP literature that makes my blood boil and my vagina, bladder, and pelvic floor start a revolt all at the same time. (It’s funny… the power of words) I have been saying that I’m going to babble on about the things that I’ve read, both good and bad, over the years..for years, but have just never gotten around to it. I fear the time has come for you all to hear what I think about the books I have read….I’m hoping most of it will be useful to you and will attempt to keep it as useful as useful can get but alas, I am highly opinionated (which most of you do in fact know) and never apologize for my honesty. So… be prepared for some random shitstorms that may fly out of my mouth. Keep in mind that these words come from MY opinions and MY opinions only. My words are not a message from Jesus and should not be taken as such. I’m merely just going to say how I feel and explain why I do or don’t like a particular jumble of words on a collection of pieces of paper. No one has to agree with me. As a matter of fact, no one even has to think that maybe they might agree with me with even a sliver of possible agreement, but I do welcome all of your opinions about my opinion as long as we all keep in mind that our opinions are in fact our own, to express however we desire and not to belittle those who don’t agree with said personal opinions. Copy?
Ok, with all of that opinion babble out of the way I leave you all to anxiously await the upcoming uber special official “Tali Keteri CPP book dissection series”
Have a drink and watch a horror flick in the meantime. Or if there is a CPP oriented book you think I need to get my hands on and form an obnoxious opinion about, send me some suggestions. Remember, I’ve read a lot of them so be creative.
15 Dec 2010 6 Comments
in Chronic Pelvic Pain, IC, Interstitial Cystitis, MTV True Life, Pelvic Floor Dysfunction, Vulvodynia Tags: Interstitial Cystitis, Lidocaine, MTV, MTV True Life, Pelvic pain, Physical therapy, Vulvodynia, Women's Health
Needless to say, the past 9 days have been totally crazy…I’ve heard from so many people about so many topics that I don’t even know where exactly to start for this blog. But the negativity aspect seems like the best thing to make clear from the jump.
Soooo, I will not focus on anything negative at all for the duration of this piece, nor will I answer or respond back to any negative or hateful emails, posts, or comments. I know that it gets you no where…except maybe upset, angry, betrayed, and in a major flare (all of which= no good and no where necessary) The truth is that at the end of the day people are going to have their opinions and regardless of whether they’re based on facts of assumptions those opinions are THEIR opinions and they have the right to hold on to them if that’s what helps them sleep at night…the only right they don’t have and I will say this loud and clear is to belittle, degrade, slander, and intentionally hurt those who may respect, but don’t agree with those opinions that just so happen to be THEIR opinions. I will respect anyone’s opinion no matter how much I disagree but I will never respect someone who irresponsibly tears those down who are supposed to be a part of your “community” because they don’t feel the same way they do. That is all that I will say about that.
For all my lovelies who haven’t heard me state this 4000 times in the past week or just didn’t want to listen I shall say it again just cuz I can and kinda want to….I was filmed for this episode for almost 4 months. There was no script, no telling how much time would be spent filmed while the crew was in the house or out following us around, and there was nothing that was guaranteed to make it onto the final cut or not. Think about how much goes on in 4 months of a chronic pain patients life and then think about how much of that shit that goes on in 4 months can make it in a 13 minute episode. Seriously. We are much more complicated and time consuming than that. Sometimes it takes me 13 minutes to pee properly. You do the timeline. Hell, I’m even surprised my name made it in. lol. I’m just sayin’ . Clearly there was a lot that was left out. There were aspects of these conditions that were not touched upon and there were some portrayals of treatment and diagnosis that seemed only took a few minutes that really took years. The film crew just caught the end of it, not their fault. Blame father time for that I suppose. Clearly my dilators didn’t help fix my pelvic floor dysfunction or my frequency problems caused by my PFD in those 13 minutes. Also, my IC ridden bladder was not taught how to act more appropriately and stop burning in those 13 minutes either. It took years….ya heard? YEARS. A ton of hard work, catheters, needles, withdrawals, acupuncture, NAET treatment, meditation, energy healing, internal physical therapy and a POSITIVE attitude to get to where I am now. I am not cured… but know that my symptoms and conditions are managed, controlled, and taught how to relax even in the worst pain so that it doesn’t get worse and worse and worse. Cured doesn’t exist yet but . But it WILL. The fact that cured’s existence isn’t present yet is unfortunate, but that is what i’m working for…that is what we are working for. That is my only purpose with this….to get everyone to a pain free state whether it’s officially cured or not. Cured is just a word…with a definition that someone , somewhere, at some point in time, thousands of years ago, gave it. Nothing more. What we need is hope…and a positive energetic path that shows each person the steps to take to get to their own personal “cure” their own personal wellness…their own personal route to conquer the pain. Don’t let the statement “no cure yet” control you. You control you..
Let me tell you what I am. I am not letting my conditions control me in any way shape or form…I am that person that questions every treatment…every single thing a doctor tells me, and I am that crazy kid that has been studying these conditions like a mad scientist from the second I was diagnosed. If I wasn’t this old I’d go back to school to be a CPP specialist and help chronic pelvic pain people like Dr. E and Isa do. Unfortunately, IC and friends helped me waste a lot of that time that led up to me being this old. Ouch time. Wish I could rewind you sometimes. I am someone that believes that in order to get a cure you have to raise awareness by any means. I am an IC patient and have been for years…even if my symptoms are not as severe as they used to be it still fuckin burns when I pee. I am a vulvodynia patient…and have been for years…even though at this point I can wear jeans most of the time , Lidocaine ointment is still my vagina’s best friend. I am a Pelvic floor dysfunction patient…and have been my entire life. If you’re not aware…it’s almost unheard of (in my opinion) with the proper diagnosis to have IC, Vulvodynia, etc. and not have pelvic floor dysfunction. It’s all connected… seriously. check out a pelvic anatomy diagram. I am not someone that is giving up this awareness fight whether people like it or not. I am a gypsy and just want to go where my heart leads me. I used to be a singer…back in the day 3 shows a week here in the city…and then my bladder wouldn’t let me make it through a live set. I sing live maybe once a year if i’m lucky. My passion now lies elsewhere. I am a loving, caring, person who truly wants the best for everyone unless you try to steal my cheese and then personally I don’t care what happens to you. lol
Kids, I’m truly sorry that IC wasn’t mentioned on the show I spoke about many important things in those 4 months that didn’t make it on. I had no control..i mean sure, I guess I could’ve kidnapped the editors and demanded that they listen to me and immediately make their show called “i can’t have sex” into a show called “my bladder is an asshole” but alas I would’ve gotten arrested and then there would’ve been no awareness for any of our other chronic pelvic pain people that need as much help as we do. We cannot be so selfish. Our time will come. I also thought that this was a great opportunity to at least…at least… get the words IC out there on national tv and was stunned when it wasn’t even listed as one of my main conditions. But, what can we do about it now? Nothing. It’s already filmed, edited, and re running….now we just gather an army and make them listen so that they can finally say IC. So ,Yes, it’s upsettting but if I sit here and dwell on what could’ve or should’ve been then the awareness stops and i’m not ok with that…are you?
If it were up to me IC people would have their own reality show that could truly encompass everything the IC patient goes through on a daily basis. If it were up to me i’d go around the world talking to IC and CPP patients about their struggles..and I plan to. I have projects in the works that will hopefully help make a turn a “taboo” shunned public topic into a “non taboo” public presence for these conditions. That is my promise and as long as my health can permit it’s what i’ll do. With that being said…the past few weeks have really taken a toll on my bladder and PFD. I’ve been flaring every day and totally let the stress kick my ass until this past weekend where I learned how to meditate properly and trust that we control our destiny in this world and as long as we stay positive we can do so much with ourselves…for ourselves…and by trusting in ourselves we can do so much for others.
I want to send a personal thank you to the other two girls in the show. Tamra and Tess…you were both so brave in sharing your stories as well and I wish you pain free days and better times. Thank you for helping to join the fight and make people realize that this exists. Stay strong. One day I hope to meet you both! Thank you to everyone who has shown amazing support. I truly appreciate your motivation! For my family and friends who cringed at some of the stuff on that show….keep in mind that it helped me get some of ME back and it is helping so many others find their way back to the real THEM as well…
REMEMBER…SMILE, BE THANKFUL, LAUGH, LOVE, DON’T LOSE FAITH. IF YOU HAVE A MOMENT OF LESS PAIN, DO SOMETHING YOU LOVE. DON’T EVER FORGET THAT YOU ARE STILL A WOMAN…AND YOU ARE STILL A MAN…YOUR PAIN IS JUST A DARK PASSENGER THAT NEEDS TO WEAR IT’S DAMN SEATBELT AND TAKE SOME F’IN RITALIN.
What an experience.