08 Mar 2013
in Chronic Pain Support, Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, prescription meds, relationships, Therapy, Vulvodynia
Tags: advocacy, alternative medicine, Conditions and Diseases, CPP, diagnosis, Doctors, google, Health, Health care, IC, icramblings, Interstitial Cystitis, Medical error, Medicine, Painful bladder syndrome, Patient, patient advocate, PBS, Pelvic floor dysfunction, prognosis, research, tali, tali keteri, taliketeri, talithaketeri, the taliverse™, treatments
It’s been forever…I know, I know. I should know better. Unfortunately, I’ve been in hiding. Well, I’ve been totally consumed in The Taliverse™ and trying to keep it as drama free as possible. It only semi-worked so I decided I should show my stars again.
I hear from more and more IC and CPP patients who are at a complete loss about what their next steps should be. More often than not I hear horror stories about how a GP doesn’t believe IC hurts and refuses to give meds or offer any form of treatment or a Uro-Gyno did a cystoscopy with no sedation. I hear how doctors assume that all IC treatments work the same for every single different human being and how if that same IC treatment doesn’t work for that particular patient, there is nothing else to be done <—— this is wrong…very wrong, in case you didn’t know. And, it is quite true that these things do happen…on a regular. It’s inappropriate and it needs to stop. But…it won’t. That’s why it’s on us to be our own advocates as soon as we walk into that doctor’s office. It is our job to know everything we can about our conditions. It is our job to tell the doctor if it’s working, not working, or if there’s something different you would like to try. If your doctor tells you that you are a nutbucket for expressing these things, I recommend getting a new doctor regardless of how much history you have with him/her. I know many people, including myself, who have been through 10-20 docs before they find one that is a good fit. In the end, it’s worth the all of the jumping around.
The truth is that at this point in the CPP game there are plenty of options to try. I’m not saying they will all work or that a specific one will work for you but there are always options until there currently aren’t any more. Take note of the word currently. I would hope that as time goes on more and more options will become available and then there will be no reason to not try something else. I guess what I’m getting at is that if your doc has only tried one treatment regiment and it didn’t work, keep trying. If he tells you no…tell him to kindly kiss your ass. If he kisses your ass and that next treatment regiment he comes up with still doesn’t work…try another. It’s a very annoying cycle. But, unless you try everything there is to try (within reason…I’m not saying to fly to a remote village in west Africa and see a medicine doctor) you haven’t advocated properly for yourself.
I so often receive emails and messages from people who have no idea of alternative treatments that are available or from people that don’t know what type of studies are going on. I can’t stress this enough…if you have access to the internet. Use it. Use all of it. All the time. Google the shit out of everything. After you Google the shit out of everything, make a list of things that can be backed up by literature or other patient’s reviews, and then go and Google the questions you have about those things that made the ”can potentially be real” list. Once you research the shit out of those additional questions and you’re sure that these treatments/studies/trials actually exist go ask your doc about it. Hopefully they’re willing to hear you out. If you have one of those close minded medical people who say this is all bullshit and for whatever reason you are hellbent on staying loyal, back up your case. Take printouts of scientific studies and slap them on the table in front of him and refuse to leave until he reads it.
We used to live in a time where doctors could spend 45-60 min with a single patient. A time where patients had a true relationship with their medical professionals. Unfortunately, we now live in the time of greedy health insurance and it’s all about volume. Everything is a quota. In 2013, the average time a doctor will spend with a patient per visit is 5-7 minutes. That’s not much time to learn about new things or hear someone out. Hell, most people can’t take a shower and clean themselves properly in that amount of time. It’s our responsibility to demand proper care. It’s our responsibility to learn about every treatment possible and to try everything that seems appropriate for our own conditions. Just because a doc says that your best option is to have your leg cut off because your knee always hurts doesn’t mean it’s the right thing to do. Get my drift? After all they’re not God and they sure as hell aren’t psychics (well most of them aren’t anyway). They’re just people who went through a lot of schooling and were really good at passing really hard tests. Sometimes, they’re amazing with sharp objects and also can make really good detectives. Sometimes, they are none of these things and then it’s up to us to help them figure it out before they remove organs or prescribe meds they shouldn’t. Sometimes, they’re amazing and sometimes they should walk out of their offices and never come back. This is the world we live in folks. This is how this works these days. Get used to it and learn how to manage it accordingly.
Moral: Always be on top of your own medical situations. If you feel something is not right, speak up. If no one listens..speak louder. Repeat if necessary.
Do not forget that it is your body. Yours. You own it.
This is your health.
It is your right to have control as to what options you have and it is your right to demand proper explanations as to what sort of treatments or procedures are in store when your doc comes up with a treatment plan.
Do not ever forget that. We have more control than we think…
Sincerely, The Taliverse™
30 Sep 2012
in Chronic Pain Support, Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Interstitial Cystitis/IC, relationships
Tags: all in, awareness, bladder pain, confidence, cure, cystitis, Education, gecko, geico, Health, Humor, IC, IC-Network, icramblings, Interstitial Cystitis, Interstitial Cystitis Awareness, Jill Osborne, Learning, marketing, Matter, painful bladde rsyndrome, PBS, power of one, september, tali, tali keteri, tali true life
It’s the last day of IC awareness month and I feel that since I was pretty much out of commission for the past 60 days and didn’t get to implement any of my fun awareness projects like I usually do, I should say something today before it’s all over. Well, the awareness projects are never over I suppose…just the extra push we get on them from having our very own month dedicated to making people learn shit about it whether they want to or not. So I shall go on and on today about just what I think we’re capable of…because honestly I know that everyone who wants to get involved in raising awareness is capable of making this whole entire world listen to what we have to say. At least, that’s how I look at it. I guess at the end of it all I wish that’s how other people looked at it as well. But, I know that not everyone has the confidence to go against their families or friends or even coworkers that tend to walk around saying that this condition is bullshit. I didn’t know if I had that confidence in the beginning either but I learned what worked and what didn’t work over time. I have developed tactics that work for me when it comes to making people listen and I feel that if everyone who is “all in” on this awareness thing can formulate something that works for them we’ll get so many more people to listen and attempt to understand. Hell, we might even be able to get people to want to go out and educate themselves on this subject *gasp….I KNOWWWWWWWWWWW.
Opening rant: CONCLUDED…. continue….
When I first got diagnosed I had absolutely no idea where to start with any of this. I didn’t know how to talk to people about it or how to explain what I had..mostly because I was brand new at it and had no idea what the hell I was talking about. I knew that people had to learn what this whole bladder condition was and either accept me with it or not but I didn’t know where the starting line began. I emailed Jill Osborne from the IC network (I wonder if she remembers that email from all those years ago…2005 I think it was) and asked her what I should be doing as a newly diagnosed patient who wanted to raise awareness. She told me to sit down with a pen and paper and figure out what I didn’t have 5 years ago that could’ve helped me now to make this journey easier. I did. I started writing and I haven’t really stopped since. Well, except for my random hiatus’ that I like to take. But, the point is that it’s never been easy to keep going and lord knows that the asshole people of this community don’t make things any less discouraging or challenging. The catch of the whole thing is that you keep going because you’re confident in the words that spew out of your mouths….confident in knowing that no matter what you’re still you…confident that if they don’t understand it, that’s their loss and it just means you have to try different ways to make them get it. It shouldn’t ever mean giving up on trying to educate people on what it is we deal with. I made a decision back then that no matter what I would believe in what I was saying %100 because ultimately, at the end of it all no one is going to believe a damn word of what you say unless you believe it as well. That is a hard thing to commit to. But it can be done.
I know how frustrating it is when you spill your story out to someone and they say the dreaded “oh, but you don’t look sick” …I know…but that doesn’t mean there’s no hope in making them get it. That doesn’t mean that they’re a lost cause and you need to chalk them onto the “thinks I’m lying about my illness” board. It just means you have to change your tactics and your strategy.
It’s all in the delivery.
The amount of acceptance this whole condition gets is based on our marketing of it.
Now some of you may say that this is ridiculous. That we’re not selling anything…that is totally untrue. We are, in fact, selling our stories. We are selling the facts about this conditions. We are asking that people stop what they’re doing and listen to what we have to say about our pain levels. We are proposing that people hand over their money to go towards research so that one day we may have a cure and when looked upon in that sense…everything about this has to do with marketing.
In my opinion, marketing truly has to begin with one person. There are thousands of marketing firms here in the city and although there are hundreds of marketers that work at each, most of the time it is one or two people that come up with that million dollar slogan. It’s one person that sits at home at night and figures out that geico should have a gecko as their mascot. Then they take it to the board…it gets approved..and it gets distributed to the masses and we all watch it a bazillion times trying to figure out if we hate him or think he’s adorable. Point is, we watch it..and I bet we can all see his silly lil’ green face and say exactly what company he represents. Many amazing marketing ideas come from the mind of one person. Why? Because an idea has to start somewhere…and where better to start an idea than sitting home on your ass trying not to run to the bathroom a gazillion times? Well, in our case anyway. lol . I used to keep a pad and paper in the bathroom…seriously. Because back in the day when I spent so much time in there I had ideas for days. I used to try to think of anything but how bad I had to pee and dear god, the things that my mind came up with. Some of those things you’ve seen and some I’m sure I’ve hidden away somewhere because they were totally bonkers. Regardless, one person’s mind can do amazing things. Just as one person can accomplish amazing things and just as one community can learn to educate another community on the issues that are faced on a daily. Everything starts with one. Just sayin..
I hear so many of you say that you want to quit because people don’t get it. “There aren’t enough people who care to make a difference” and ” I can’t do it on my own”. This whole way of thinking has got to change. There are so many “one’s” that have made a difference on so many different topics in this ginormous world. SO many. So many my brain can’t even process how many. We are no different. You have to realize that instant gratification is never going to happen in a situation like this and if it does it’s rare. Trying to educate a world who knows nothing of this condition is not going to happen overnight. It’s a gradual climb. And an annoying climb up an icy slope in bare feet at that. It’s difficult. It’s hard. It’s all about how one person delivers this message to whoever they’re trying to talk to. Not everyone is going to accept sitting there and listening to you talk about how many times you have to pee a day. They just won’t be open minded enough to get it. Some will. Some won’t. If the one’s who won’t are still sitting there..change your delivery. Instead of making it about your story tell a different story that you think they can relate to. I’ve found that most times it changes the close mindedness and sometimes it doesn’t. Sometimes there’s no changing someone’s mind. But most times you can grasp an audiences attention by..well…knowing your audience.
I guess my whole point is that it doesn’t matter if you feel like it’s just you against the non-IC world. It truly doesn’t matter. It makes it more difficult. It makes it harder. It is definitely more tiresome but at the end of the day if it’s just you in your small town walking around handing out flyers then that’s you making a difference.
Picture it as a ripple in the water. If one person gets one person to educate themselves on what IC does to a lifeform then maybe that one person will tell one other person and someone who talked to that one person finally goes to the doctor because she’s had these symptoms for years and never knew what it was. Maybe just one person talking can inevitably get many “ones” some help. See where I’m going with this?
It’s hard and frustrating. But if you keep that in mind….think of the difference you all can make….even if it’s just you. Even if it’s just one.
Hell, if you add up enough one’s you eventually get gamatrillions of ones. And that’s a lot. For real.
22 Jul 2012
in Chronic Pain Support, Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction
Tags: Breast Surgery, broken toe, Chronic pain, Chronic Pelvic Pain, Doctors, Emergency room, IC, Interstitial Cystitis, jobs well done, obamacare, Pelvic floor, Pelvic Ultrasound, tali keteri, taliverse, Urgent Care, UTI, work ethic
I know I speak of no secret when I say that the health care system fails many patients looking to it for assistance on a daily basis. It can be as something as little as a busted lip, broken foot, or a terrible cough, or it can be something as serious as chest pains, chronic pain conditions, or cancer. I have found in my 20+ years of spending time in numerous health care venues that it typically doesn’t matter what ailment you are there for because the amount of care you get is based completely on who you are, who you know, which doctor actually bothered to learn about total body care even if they were ”just going to be a podiatrist”, and how good you are at playing the “I deserve to be your patient and be treated as one” game which I’m pretty sure that all CPP patients know that if you can’t play that game you will not be seen or taken seriously. It’s horrible. Why should we have know the right script and red flag symptom list in order to talk to a doctor and get some tests run? If we went in and said “oh, my stomach hurts really really bad in the lower right quadrant but I do have IC” they’re either going to chalk it up to an IC flare or tell us we’re there for meds as opposed to looking to make sure our appendix isn’t going to explode or that our ovary isn’t trying to crawl out of our belly button. It’s freakin’ ridiculous. So instead you learn the game…and you make sure you play it well…otherwise you get looked at like a pill head or someone who can’t manage their IC flares…and that’s if they even can admit that IC exists.
***side note also known as Taliverse ADD
I have worked in animal care for years. I have yet to run into a seasoned Veterinarian, fresh outta school intern or board certified VT that has to ask me what IC is when I tell them I have it. They know what it is..the mechanisms behind it.. and sometimes even try to offer information, literature, and studies on certain veterinary meds that work on the IC cats to see if it’s something that may work for us.
VETERINARIANS KNOW ABOUT IC.
Your typical human urologist does not. That is something that we have to change and soon….
***end sidenote/ADD moment
In my 10 years in NYC, I have seen numerous patients bleeding profusely while sitting in the ER waiting to be seen which not only is a hazard to their own well being but to the safety of others…many others sitting in the ER for a stubbed toe or antibiotics for their cold, (which is why we have so many infections that are becoming antibiotic resistant) wasting total resources for the people that really truly need to be there and others such as chronic pelvic pain patients that need to know asap if the excruciating pain their bladder is in is nothing more than a flare up or a kickin UTI that needs to be rectified immediately. I’m not saying that if you are injured that you shouldn’t go get medical help but for gods sake can you please know the difference between an emergency and an urgent care facility situation? It angers me….more than words can ever explain. Now of course there are different situations here to consider….some small town people may not have a 24 hour urgent care facility and in that case you shall be exempt about the groups of people I am bitching about…but for those who do have access and choose to sit for 4 hours in the ER for a toe nail that your drunk ass ripped off on the sidewalk last night go sit your ridiculous self in urgent care and leave the ER for those who need it, like the people bleeding out on the floor or those who can’t pee and are chancing a bladder rupture…like for real. Ok. I feel a bit better getting that out…can anyone here tell that I’ve had my own recent shitty and ridiculous ER experiences?
Nah..of course not . lol
So the real issue I want to touch on here is that no one wants to do their jobs anymore. Doctors don’t want to learn about things that may not make total sense to them the first time they hear it so they pass it off as bullshit…just like the front office people don’t want to pass on messages or schedule your appointments correctly or give you the copies of the records that you need so you can get your damn surgery the following monday. They don’t want to believe that you may know exactly what you talk about when you walk into an imaging place to get a pelvic ultrasound with a full bladder and leave you sit there for an hour regardless of how many times you’ve fucking told them that putting you in this position will fuck your whole shit up and maybe make you have to self cath for the first time in 3 years….just like when you get tests run and no one calls you with the results let alone answers the phone when you call to get them yourself. It baffles me. Maybe it’s the change in the times but I”ll tell you somethin…’ when I was growing up I was taught that you get rewarded for a job well done and that if you are lucky enough in this world to have a kick ass job that offers you money so you can pay your bills, put food on your table, and insure that you have a roof over your head you should do your job and do it well. It’s a thing called work ethic…and more and more I am seeing it disappear out of our society. It scares me. It’s a problem. I don’ t like it…so I shall whine about it to all of you if you should choose to read this thing through.
I’m not saying that everyone has to be on point all the time. Afterall, I am a really freakin’ reasonable human being and lord knows I am rendered completely useless when I am emotionally distraught but, the thing is that once you have your shitty bad day or week even, get back on the ball and do your damn job. It effects everyone involved when you don’t. It absolutely astounds me at the amount of “dont give a fuck ” that goes on in our healthcare system and It’s going to be insane in 2014 when Obamacare kicks in and then chronic pelvic pain patients will have to wait 8 months to see a urologist or pain management doc as opposed to a few weeks or a month and all pain meds will be regulated in a way that only cancer patients are allowed to have them. I can’t wait. It’s going to be amazing…. *chokes on the sarcasm and take a big swig of we’re screwed to wash it down with.
So…my point is that people in need of health care are made to feel crazy enough by feeling like shit, not knowing what is wrong, losing parts of themselves during the time that they are in pain that they just want to get back, not being able to be seen or get records they need to be able to go to the next doc who will probably tell them that they don’t know what’s wrong, or having to sit in a waiting room for 15 hours because someone forgot you were there, stubbed their toe last night, or just want an excuse to get out of work. It’s just that it’s hard enough. I just wish that the people who went into healthcare whether in a treatment or front office sense would either do their jobs or move on…because at the end of the day the people who are sick just want answers, to feel better, and move on with their lives too. This is something that needs to change. It has to. Everyone deserves medical treatment if they go asking for help and everyone should be able to acquire the materials they need to find help elsewhere if their first attempt doesn’t work out.
I have found that in dealing with my new found medical issues (Not IC related) over the course of the past few months that all of the problems I used to experience as an undiagnosed IC patient back in the day are very much still there. Such as having to know what to say to the docs in the ER to get them to take you seriously, acquiring records, making appointments, getting tests run etc….along with 5 trillion new problems that come down to a loss of work ethic and carelessness. Its sad ….truly. And I want nothing more for it to change and for people to find the help they need. I just pray that something gives….but you won’t catch me holding my breath for anyone else to change it..it’s up to the patients to demand better treatment, efficiency, and accountability. Just think… if every patient who has ever been done dirty by the healthcare system put their foot down at the same time it could possibly draw some attention…or maybe that’s just me being hopeful and at the end of it all it really wouldn’t change shit.
Oh well..in the meantime, one can hope. And I do.
*** Just because it’s the right thing to do.
Yes. I bitch…a lot…and I write about my opinions and things that I feel strongly about…which is everything I wrote about in this piece but I do want to say that not all docs, nurses, and front office staff are bad or complete asscanoes and I think that’s something we have all ran into during the various courses of treatment that we chose to take. I do thank all of the health care professionals who do take their patients seriously and do try to find something that works for them so that a comfortability factor is reached. I wish there were more of those in this world…for all of us..or maybe just ones that are easier to find so we didn’t have to go through 3248234u32 bad ones before finding the one good one who decides to help no matter what.
Just throwin that out there. Just cuz i like to throw things…
24 Apr 2012
in Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Interstitial Cystitis/IC
Tags: IC, IC Surveys, IC-Network, Interstitial Cystitis, Jill Osborne, Painful bladder syndrome, surveys, tali keteri
Interstitial Cystitis related surveys.
Go here…check em out. Take em all. Help gather some valuable info that may help us out in the long run.
Big thanks to the IC-Network for compiling all of them together in one place.
06 Feb 2012
in Chronic Pelvic Pain, Interstitial Cystitis, relationships, Therapy
Tags: Chronic pain, happy, ic ramblings, Interstitial Cystitis, meg dolla, new, smile, tali, tali keteri, taliverse, universe
Easier said than done I always say. I mean don’t get it twisted..I. do. smile. And it is easy to smile or at least sorta easy to smile. It’s just not easy to always mean it and it’s even harder to find something to smile about when shit always goes wrong. People will sit here and blah blah blah me about how I should try to find the joy in life and think positively but unfortunately all of that just never worked for me in the aspect of dealing with said life. In a chronic pain aspect it helped me tons. Positive thinking also helps with reinforcing positive energy and frequencies that surround your being but it never really helped me to smile during a total shitshow. Cracking jokes about my own misfortune is about the only thing that holds steady in the “make T smile a real smile” category. That and music…. and Meghan..she’s gotten pretty good at dragging a genuine smile out of me (with a meat hook if she has to) in the worst of times. I guess what I’m getting at is that it is totally possible to get a smile out of me but only a few people and situations can get a real one when the Taliverse is about to self implode. That’s just how it goes.
I don’t ever expect amazing things to happen..that way when amazing things don’t happen and shit ends up real bad or just mediocre I am not nearly as disappointed. I can honestly say that every time I do get a glimmer of hope about something, whatever it is manages to destroy itself or disappear before the next time I can blink my eyes and make another bathroom run. It sucks…lots…and I learned a long time ago that I’d much rather just expect the worst and be surprised if it doesn’t end up as bad as I first thought it would than expect too much and be severely traumatized when it ended up being shit. Call me a pessimist…that’s fine. But in all honesty I really don’t think that I would go about changing any of it. The only thing that I would consider changing is how I should be putting myself in better situations and surrounding myself with better people where this smiling thing would better come into play. I’ve tried to master this concept but unfortunately at the end of it all I end up caring entirely too much, letting my emotions play into everything, and putting humans on the superhero pedastal. When you put too many expectations on other humans and they fail miserably you end up “hating” them…and everyone else..and then you only smile when you make the jokes or when someone in your circle actually acts like a human with a heart and drags one out of you. Or when the shitshows subside for just long enough for someone you never expect to sneak in and change everything about everything I just said. Hey…it can happen.
So, onto the point of this lil’ smile-esque rant of mine.
I’m smiling….like really truly smiling. Not forced…or fake or any shit like that but for the first time in a hell of a long time I’m genuinely smiling.
Like almost ridiculous amounts of alot.
My face isn’t used to it.
Either is my brain….apparently. I keep getting headaches and getting confused about those constant laughter sounds coming out of mouth.
Everyone else who knows me is confused too…and personally I think they think I’m hitting the laughing gas when no one is around.
It’s funny because I love, love , love, love to laugh like this and it’s funny because I’m trying to get accustomed to the fact that my face is supposed to light up when I smile this much and that I actually look kinda pretty when it does. I guess I got really good at looking pretty without that genuinely happy glow… after all anyone can turn a scowl that meant for the universe into a sexy sorta “i’m badass” sorta pretty. I mastered that one years ago.
It’s been going like this for a week….(6 months if you go by our timeline because we like to skip 23409285209. 789 minus 4 times 2 and a quarter steps) but a week. I’ve been smiling like this for a freakin’ week. Is everything all sugar plums, fairy dust, and green bay packers green n yellow? No. Of course not…but regardless of the shitshows going on all around us….I’m still smiling. I’m not instantly cursing at the universe and her lil’ games because I’m too f’in happy that she gave me a break enough to find someone who makes me feel this way again. I can’t guarantee that if she wants to throw a whole fucktons of shit at me for the next 5 months without a break in between that I won’t scowl at her in the process…but I can say that at least I’ll have someone who can make my face do that funny smiley thing in between plotting her demise.
I guess at the end of the day that’s all anyone can ask for….
I didn’t even have the balls to ask to be just happy…I just hoped.
Thanks universe for not giving me shit for the first time in 2 years. My gratitude for that is unsurpassed….
and for that…I smile right in your face…bitch.
31 Oct 2011
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC
Tags: Costume, Halloween, Halloween costume, Horror, Horror film, IC, Interstitial Cystitis, Nicki Minaj, NYC, NYC Village Halloween Parade, tali, tali keteri
Typically Halloween is one of my favorite holidays like ever, ever. For some reason this year I am not into it at all. I mean don’t get me wrong, I have plans of sitting in my bed all day watching the goriest horror flicks I can find thanks to Instant Netflix and enjoying the shit out of it but I’m just not feeling the whole dressing up and going out thing. It’s unfortunate. It’s unfortunate because i’m not going to (not at this point anyway)and it’s unfortunate because I had a kick ass costume planned out for this year. I don’t know if the issue is that i’m slowly turning into an old woman and just don’t wanna be bothered with the chaos that is NYC after our famous Halloween parade or if it’s that I’m just too freakin tired. I feel like I never stop.
I don’t ever stop.
I feel like I never sleep.
I don’t sleep.
I eat too much.
I don’t eat at all.
I’m always battling some form of weird medical issue…not IC related ironically enough.
I sing (there’s an explanation about how this came back around coming up next)
I do overtime.
I’m still broke.
Like really broke.
I’m not dressing up for Halloween.
That makes me sad…and remotely happy at the same time.
I’m missing something massive in the Taliverse and honestly take up shit tons of time trying to figure out what that is…it’s important that I figure this out in a timely fashion because quite honestly…i’m not getting any freakin younger. This may be why I don’t sleep. Or maybe I don’t sleep because of everything else I try to do in a measly 24 hours. Damn universe and it’s limit on a 24 hour day. Does it not realize that it’s hindering my future? I think that perhaps it just doesn’t care. I think it laughs at me often while saying in it’s best valley girl voice ever “my time limit didn’t hinder the rest of the successful population out there you’re just being a douchecanoe…man up” and personally, there is just something about being told to man up in a valley girl voice that makes me have an aneurysm and have extreme selective hearing. I know that the bitchy, cheerleader, trust fund version of the universe has a very valid point . I’m just going to wait until it has Strep throat to listen to it’s much less annoying message.
Point is that I just don’t have time…and when I find a lil’ bit of time I want to relax or get other things done I don’t want to spend the 2 hours I have on dressing up, spending an hour on the train with drunken sexy-but really not-so-sexy zombie bitches, Nicki Minaj lookalikes that lookanothinlike, and the men in trenchcoats that typically look like that but are just tryna cop a feel, just to get down to the village to be battling for the bathroom with all the drunken fools. No thanks. Just not feelin’ it this year.
Maybe as the day goes on I’ll convince myself to throw on a costume from a previous year and head down to The Back Fence with the roomie while she get’s stuck behind the bar in this mess of a wonderful holiday or maybe as the day goes on I’ll get more and more comfortable in my bed with my cocktail and laptop while critiquing all the horror movies I can find while I bitch that I can write a better horror based screenplay. Maybe I’ll do both.
Maybe I won’t.
Maybe I’ll dress up and prance around my own living room and have my own parade.
And then i’ll be out of time and it’ll be time for work again in the AM.
In the meantime, everyone else I know is putting finishing touches on their costumes and perfect pranks for the evening. Afterall, I always did appreciate the effort that some people put in.
I hope that everyone has a blast tonight! Be safe…for real real. I don’t know about other places but I know that NYC gets absolutely bonkers tonight. You can never be too cautious. Ladies…keep ya wits about ya. It’s always a lot more dangerous when masks are everywhere. Have fun! Dress well. Eat loads of shit…and make a dentist appt asap.
15 Aug 2011
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
I’ve been needing (yes needing) to write a piece on this topic for quite a long time. Usually when I am so inclined to spout my thoughts and feelings on a topic I just sit down and do so with no questions asked and absolutely no procrastinating. Unfortunately, this topic deserves pure thought, passion, and patience (and we all know that patience is not something that comes in abundance in the Taliverse). This topic is something that has plagued my thought process for the past 7 years of my life and continues to do so on a daily basis. I’m quite surprised I haven’t attempted to tackle this subject earlier but as I said before…it deserves the utmost dedicated attention and the words that I write to do said topic a complete and utter justice. This is not an easy subject to handle but I plan to do so in a way that gives you no choice but to think about it from my point of view. I have a knack for making people see things my way if only until the end of my rant but at least you will have thought about it in a little less of a close minded manner for the next 10 minutes of your life. That to me is a start…and something that I’m willing to accept for now. In light of September being IC
awareness month, I feel this is, in fact, the right time to challenge the non-believers and ask just one question…one question in many different ways….Why, pray tell, do you think that a bladder disease that causes massive amounts of acid pissing and uti (urinary tract infection) symptoms with no infection, dysfunctional abdominal muscles that cause painful pressure and stomach spasms all of the time, and painful sex due to unruly nerve endings and constant muscle spasm is so unbelievably impossible? Why?
I want you to stop right now and actually ponder what it is about these conditions that make you shun the possibility so quickly. What about these problems is so laughable that it causes families to break up and lifetime friends to mock the chronic pelvic pain
patient uncontrollably? It’s something I’ve always wondered and something that I would honestly love to hear and I plan to, in excess, but only after you hear me out. I’ve been listening to people tell me that it’s all in our heads for years and quite frankly I think it’s time to ask you why your head tells you this pain that so many of us feel in this world is so impossible while there are so many other conditions that have less of a scientific and medical explanation out there than these that are readily accepted by the you (who just so happens to be the typical IC/Chronic Pelvic Pain
non believer) and the rest of society.
I really want you to think about this. It’s important that there’s a thought process behind the non-belief. Not because you’ve heard someone you know who knows someone you know that has these conditions and that they’re not real. Not because you’ve heard a doctor say that the pain can’t be explained therefore the pain does not exist but why YOU yourself do not believe in the possibility that these conditions destroy so many people. After you’ve done that, please continue to read on. Open your mind before you read on and honestly hear me out. If you aren’t able to do that then please by all means run yourself over with your own car in your own driveway as many times as it takes because in all honesty I don’t see how you can survive in a world of ever changing things…technological and medical advancements, wars, debt,equal love, and murder if you cannot open your mind’s eye to every possibility out there. It’s not a matter of opinion but a matter of how in this day and age can you not think that anything is possible?
Herein lie some very important facts. Yes. Facts. Proven. Tried. Medically accepted. Facts. The dictionary definition of fact is simply this:
1. something that actually exists; reality; truth
2.something known to exist or to have happened: Space travel is now a fact.
3. a truth known by actual experience or observation; something known to be true: Scientists gather facts about plant growth.
So what I am about to give you as a basis is pure fact.
The vagina, aside from being used for the typical purposes in life such as: sexual intercourse, child birth, pleasure, etc. is really nothing more than a massive muscle. If you don’t believe me look up the anatomy of a vag
. The walls are made of muscle and nerve tissue just like all of the other parts of our body that are required to move, handle loads of pressure, and help control certain activities. The concept of painful sex seems crazy to people and yet they can easily believe that one can have mouth pain…joint pain…quad pain.. reoccurring back muscle spasms…..fibromyalgia is widely accepted as well. People are so ready to prance around, charlie horses and all,with the notion that their legs get constant muscle spasms, for example, Restless leg syndrome
, for no reason other than the fact that the muscles and nerves in their legs don’t know how to act right, but they can’t believe that a vagina could hurt. Logically, it makes no sense…which makes the whole thing just 100% illogical and ill-thought out. Rather…not thought out at all seems a bit more like it.
Afterall, a muscle is a muscle…is a muscle…is a muscle. Do you see what I’m getting at here?
Think of this….if your running form sucks but you continue to run every day , you will forever be battling shin splints, stress fractures, and sore leg muscles. You will most likely smarten up at some point and fix your form and most of these things will likely go awa. Unfortunately, your legs have been trained to run in shitty form style and even though you’ve corrected the form issue your legs know nothing up until this point in their lives but the wrong way. They continue to hurt and wreak havoc on your training schedule primarily because wrong is all they’ve ever known and also because there is a certain amount of damage that has already been done from years of shitty treatment. Makes sense yea? So with all of that being said I would like to explain a few things about Pelvic floor dysfunction
Pelvic Floor Dysfunction
usually goes hand in hand with and helps exacerbate the other conditions a typical CPP usually has patient, such as Interstitial Cystitis and Vulvodynia or Vulvar Vestibulitis
. That’s something to be kept in mind when looking at the pain a person goes through as a whole pie, rather than just a slice. But for now we shall focus on PFD
. (Click on all the links to see the scientific/medical explanation for this condition because you’re not going to get it here)
The easiest way for me to describe what PFD is like goes a little something like this. You have one rubber band…that’s it. It has to last you your entire life for whatever you have to use it for. Hang shit from it, hold shit together,pull your hair back, snap people in the face with it, I don’t care but you only get one. You don’t get to put it in a safe place and hide it just to prove to the rubber band god at the end of your days that you still have your one sole rubber band and that it’s still in good shape. It must be used. It must be the only one in your life. No cheating. No whoring around with hair ties and other means of elastic allowed. I’m watching you and your rubber band and so are the rubber band gods. If you’re a 2000 or later model human you probably know how important it is to keep this one rubber band healthy for the duration because there is medical information out there to tell you how to keep the elastic supple. Most 1999 and before models probably weren’t handed this “how to keep your elastic supple” information when they were first given their one lone piece of elastic because no one really had that much helpful information. Some people start out treating their rubber band well and some people are playing catch up but the moral of the story…regardless of when you were given your rubber band and what info was out there when you were first gifted with this lovely circular piece of love, is that you have to make it last. Keep it strong. Keep it from breaking in two. Don’t overstretch it but be cautious to not under stretch either. Don’t overwork the thing and if you do make sure you’re doing so in the right form. Teach your band good posture. This will insure that the pressure this band must ensue is distributed equally over the entire circle and not just one area….what happens if we put too much strain on only one section of something? This is easy. It breaks. Remember, breaking is not allowed…nor is it ok…and if it breaks, it hurts. It hurts because some other part now has to pick up the added pressure and try to continue to do its duties properly. It lessens the effectiveness of the entire process. Some people’s rubber bands have gone through some pretty traumatic events….child birth, for one, is a major culprit here. There are accidents, surgeries, abdominal muscle tears, downright underuse which does nothing but result in a weak pelvic floor that can’t hold up the other organs it’s supposed to…*coughs and clears throat” …I mean weak rubber band. Scar tissue is another big issue here. Imagine that your rubber band breaks and you tie a knot in it to reconnect the circle….it keeps breaking and you keep tying more knots. Now it doesn’t maneuver smoothly and things that have to hang from it get stuck on the knots…therefore putting extra pressure on the unknotted parts. This equals issue. This equals long term fail. Long term fail equals painful movement…unfluid movement if you will and if things don’t move right for a long enough time everything eventually starts to function at a lower level of effectiveness.
Are we starting to understand the concept of faulty muscle movement? Pelvic floor dysfunction is something that can be managed but it takes a lot of retraining…. especially after years and years of misuse. It takes months and months of internal physical therapy, scar tissue treatment, and a shit ton of pain. It hurts like hell because some of these abdominal muscle knots have been living there comfortably for years and they don’t want to be evicted. Think of when you have a neck knot for a week and finally your boyfriend digs his thumbs in there to get it out. It causes a headache and that sick feeling in your stomach. Imagine having that knot in your stomach and having a penis jiggle shit around in there every time you have sex. It hurts. It puts pressure on internal muscles that feel like they need to contract to get pleasure out of the whole insertion experience but they can’t contract because there’s a massive knot in the way that’s making things go all lopsided…And that is only one aspect of painful sex….This is just the first base we’re going to touch about the subject. Why? Because I need you all to understand the whole picture….So we will now be moving on from the rubber band *coughs and clears throat again”..I mean Pelvic floor onto some of the other pain causing aspects of a CPP patient’s life.
When things go all lopsided because of the pelvic floor dysfunction issue it then puts pressure on the bladder causing Interstitial Cystitis to rev itself up to asshole mode and causes extra friction on the vulva resulting in Vulvodynia or Vulvar Vestibulitis to start throwing a temper tantrum. Think of it as sibling rivalry at its best. They all must work together to get the chores done but do nothing but annoy the shit out of each other along the way. Everything stops working together and everyone has to go to separate corners to be on a time out until all parties have calmed down. This works great with children. Not so much with organs that rely on each other to get shit done.
Interstitial Cystitis is simply this….our bladders are hypersensitive to anything acidic. This is primarily because the Glycosaminoglycans layer of our bladder does not provide enough mucous lubrication to protect it from harm.
<———-This picture is what a normal bladder is supposed to look like….
<—————–There can also be petechial hemorrhaging in the bladder lining which causes there to be bloody ulcers….kind of like a stomach ulcer but on the bladder lining instead. You know when you have a bleeding stomach ulcer and nothing acidic can be drunk or eaten because it’ll make you bleed out and hurt like hell? Same concept…just a different organ that’s also affected by the acid. It burns. It bleeds. It hurts. It’s not fun.So when some of you really rag on your IC friends about why they don’t go out to dinner anymore etc. etc…think about how not worth it at all it is to go out to dinner and drink pH balanced water and eat saltines while you guys get to eat whatever you want and have a cocktail. We’re not mad at you cuz you can..but you shouldn’t be mad at us cuz we can’t. Not cool kids. Not cool. It’s more enjoyable for everyone to stay home. For those of you who have had a urinary tract infection take a moment and think about how terrible it was. You probably felt like you had to pee but could only pee 3 drops at a time regardless of the fact that your bladder was full and felt like it was going to explode. Your vag and bladder also probably burned like a hookers forehead after receiving the sign of the cross by a priest in Sunday mass in the South. There was probably no hope of getting comfortable and i’m guessing there’s a good chance you couldn’t stand the pressure from your underwear or jeans. I’m not making this up….This is typically the general concensus when it comes to UTI symptoms. Now that we’re all in agreement on that…please realize that IC for most people (for some certain symptoms and pain levels vary) feels like that stupid UTI but is nothing like a UTI
(there’s no infection or bacteria present) for 24 hours a day..7 days a week..and 365 days a year. It sometimes never lets up. Sometimes it does…and then it comes back and it officially gets called “I’m flaring”. This is universal IC language for “my bladder is being a douche canoe and is wearing its asshat today”. At this point an IC patient starts to panic. They have school to attend, kids to feed, jobs to go to, and a life to live. All of these things come easily when not in a flare. How do you do these things when you have to piss 3 bloody acid drops every 3 seconds and still function like a normal human being? How can people expect other people to function properly all while prancing around saying it’s in your head? I’m still hoping for a logical explanation and am waiting with baited breath for the person that wants to give me some insight into this “it’s in your head” topic.
Ok. Forging ahead….
Time to put our rubber band and bloody ulcers together in a bag and shake them up.
Time for another scenario. The rubber band is tired and wants to go to bed. It has a cramp. The bladder is bloody and acid burned and would like to go to bed as well…unfortunately it’s full and has to relieve itself. Bladder sends nerve signal to the brain that says “bitch…time to go sit on the porcelain throne and attempt to pee” Brain says…”ok legs…time to move. Pull pants down…time to sit ..or stand, depending on what appendages you have and ahhhhh release” Except the issue is that the rubber band is already sleeping and can’t comprehend this release signal thing. So it gets up and works for a total of 3 seconds before hitting the snooze button and going back into a coma. Bladder gets excited and says”ahhhh yes thank you for getting rid of this acid urine I feel so much…oh shit. It’s still there. Ow ow ow ow ow ow ow ow ow ow….damnit. Ow. Lets try this again….and repeat” Brain tells bladder…you are not done yet…Bladder says, “ yes thanks mom I know but I can’t contract”. Brain says…”damnit abdominal muscles can you get up and take out the trash please…or no allowance for you” and it says “sure mom” as it gets up contracts for 3 more seconds or until mom walks out of the bedroom and immediately crashes back into its bed until the next time mom comes a knockin’. This is the typical cycle. Now of course..the more times you start and stop the process the more strain gets put on the knots in the Pelvic floor and the more acid gets sloshed around the bladder lining causing more and more irritation and more muscular pressure. Things can never work running on a system like this. The constant body part battle does nothing but piss off the other sibling only causing a rebellion and the silent treatment. In other words, mom gets nothing done in the morning only causing her to be less patient and less likely to let you go to the football game this weekend. The bladder/trash can never gets emptied and you don’t end up with the allowance you need to go out this weekend anyway and the pelvic floor gets more and more tired from having to constantly wake up and go back to sleep before finishing a real workout. The pelvic floor then also becomes one of the most hated family members because it’s lazy.You can’t get that mad at the bladder because it is, in fact, quite broken and not of its own accord. Laziness is not the bladder’s issue….the bladder wants to be a surgeon but doesn’t have any hands. That’s an automatic fail.
Here’s some more food for thought, or if you prefer, another notch in the don’t dare argue this with me belt. Would you want to have sex with UTI symptoms? And don’t automatically say no because it’ll spread the infection. Could you imagine getting any sort of pleasure with those types of symptoms? If you say yes…I hate your face and you’re a liar. Or you’re just a sadistic bastard…which in that case is a totally different argument and you can carry on. I will give myself a LOL here considering I’m giggling while writing this…
Can we see how things work against each other to wreak extra havoc? Good. Let’s add another one to the pile.
has no one specific cause. There are shit tons of speculations as to what can cause it but that is not what i’m here to argue today. Look it up
yourself and see if any of the people you so kindly tell do not have this have been through any of the many possibly causes. Once we get to that point we can continue.
Vulvodynia is pain of the vulva…cleary that’s for women considering men do not typically have a vulva or clitoris. If you didn’t know that.. people please take a damn anatomy class. This is just me and my thought process but the best way that I can describe it when it comes to my own Vulvodynia issues is that it is a type of vaginal nerve damage. Either the nerve endings in the skin of my vulva are on high alert at all times and love to send and receive the wrong signals or I did so much damage to that very sensitive area that the nerve endings are on sabbatical. either way…the symptoms are all over the board. Some people experience a sandpapery feeling with any type of touch…and that doesn’t mean just someone elses fingers or body parts but could also be underwear, water, pants, a speculum etc. Some people get stabbing pain like what a back spasm feels like but instead in your genital region. Some people can get through every day with no pain but the second any amount pleasure giving is involved it feels like someone just used a brillo pad to clean your vagina and poured vodka on it before inserting anything phallic. Ouch. Not fun. Not one symptom. There are many variables here and that doesn’t make it any less believable. Some people get in car accidents and break their backs and never walk again. Some people get in car accidents lose both of their legs and have brain damage but eventually do walk again. All of our bodies are completely different from each other. Granted, we typically should have the same anatomical and physical make up but not everyone will get lung cancer from smoking just like not everyone’s vulvodynia or Vulvar Vestibulitis will incorporate the same symptoms from the same activities. It also means the treatment that worked for me may not work for the next VV patient and so on. If anyone would like to argue this…now is the time. This is the same reason why some people survive certain things and others don’t. There are so many factors involved in the human makeup. There’s genetic disposition, body type, autoimmune, blood type, allergies…these are all things we as a community accept. So why is it so hard to come to terms with when it comes to the difference in pain levels and pain control Chronic Pelvic Pain
So when you take all these things and put them in the shit bag and shake them up together it makes perfect sense. Think of the Vulvodynia/Vulvar Vestibulitis as the black sheep of the family which is going to act like an asshole every chance it gets just to defy mom. The bladder is trying its best to get rid of all of the bad despite being born with physical disabilities and the rubber band/Pelvic Floor is trying to stretch every way possible to help everyone out but never takes care of itself. It’s your typical dysfunctional family…which I think should be pretty easy to relate to. I’m just sayin…
As a side note:
means painful sex for any reason (all of the above conditions included plus many, many more) and this is where all parties who experience this come in. Men included. Don’t think they’re special. Both genders can be plagued with this ridiculously shitty issue. It excludes no one. It’s not racist. It has no age limit. It goes by its own rules. It’s an asshat. Just wanted to throw that umbrella up in there during a drought because I could.
So. That is my debate. It’s simple…oh so simple. All it requires is some “real people” thinking. Use those brains we were blessed with. Being so damn close minded doesn’t make anyone look pretty. It doesn’t suit you. It makes you look dumb.
I hope most of you non-believers have a better understanding now. Or at least have started to open your mind a bit…that’s really all I could ask for. For those of you who are still sitting there with that pompous look on your face talking about “why can’t they do anal sex instead if regular sex hurts and “(ps….the pelvic floor is still involved…dummies. What do you think holds every organ and muscle up in the abdominal region) I can only pray that you don’t ever get diagnosed with an incurable condition/s that is not widely accepted or studied because you will never be able to handle people acting this way towards you. I hope for your sake no one you genuinely love and care about gets diagnosed with anything that seems unorthodox as well….it’s very unbecoming to those you love when you treat them like a piece of rotten pie because you don’t want to try to understand the “sick” concept. This is just a word of advice. All I can do is offer you that…and I have..and I will…and you will hate me…..and that’s ok because, quite frankly. I could do this shit for days and I don’t really mind when people don’t like what I have to say anyway.Afterall, I’m always up for a good challenge and Lord knows I get a sick enjoyment out of a good debate. Can ya tell?
**disclaimer- I am not a doctor, nor do I plan on being one. Not for humans anyway. Everything stated in this article is my personal opinion and should be treated as such. Please seek a doctor’s advice and guidance concerning diagnosis, treatment, or anything medically startling that could require hospitalization. I, Tali Keteri and The rambling’s of an IC patient make no representations as to the accuracy, completeness, suitability or validity of any information on this site and will not be liable for any errors or omissions in this information or any damages arising from its display or use.
08 Jul 2011
in Chronic Pelvic Pain, IC, Interstitial Cystitis, MTV True Life, Pelvic Floor Dysfunction, Vulvodynia
Tags: Endurance racing, Goonies, Health, Interstitial Cystitis, Lady Sparta, Living with IC, Meg Dollar, MTV, MTV True Life, Muscle, New York City, Obstacle race, Pelvic floor, Pelvic floor dysfunction, PFD, running, spartan Race, super spartan, tali keteri, True Life, Vulvodynia
I have been missing a huge pie sized chunk of my soul for a very long time. Like I’m crawling through a never lifting heavy fog that’s weighing on my chest and unless I can get that pie back in one piece and totally uneaten I’ll never get out…isn’t that a nice opening statement? Sucks you right in like “wow, this female is a totally sad excuse for a decent train wreck” right from the jump. Excellent! That was the goal. So,now that I’ve gotten your attention, let me elaborate a bit.
I was an extremely athletic person my entire childhood, all the way up through my teens, and into my medical health downfall stage of my early 20′s. Nothing was too much for me. I was a heavily competitive gymnast from the time I was 3 until I was 14; a horseback rider since I was able to hold myself up; a diver for my high school swim team (yes people, I may be broken and out of shape but, I can still do a mean double twisting one and a half) ; a decent mountain biker and finally a runner, both competitively and well…in all honesty, what else is there in life but competition? You’re either competing against another human or you’re competing with yourself. Either way, you have to step up to the challenge to do better or at least do as well as you did the time before. There is nothing more gratifying in the world than that.
At least to me there isn’t.
There used to be 2 things in the world that could bring me out a funk. Singing and running. If it was a really bad day I’d do both simultaneously.It may seem weird but let me assure you that running the streets of NYC and singing at the top of your lungs doesn’t get you that many weird looks around this massive city, contrary to popular belief, and to top it off it’s great for building lung capacity. I’m just sayin’. Anyway, doing those 2 things on a daily basis kept me grounded, made me smile and ultimately made my ass look amazing. Ok, Ok, i’m sure the singing had nothing to do with my ass, but the running definitely played a part.
It seems I’m deviating away from the point. Apologies.
Anyway, in my early 20′s I had no choice but to stop running, completely, due to being diagnosed with Interstitial Cystitis, Vulvodynia, and Pelvic Floor Dysfunction (all incurable,chronic pelvic pain conditions) which are all super aggravated by just being alive, let alone any type of physical activity. At first not being able to run every day seemed like something I could live with. It was either continue with the rapid leg movement and foot/pavement battles or aggravate all my my medical conditions and end up not being able to walk or function for 3-7 days after a short 2-3 mile run…which totally blows. I chose the first option and continued to struggle with my medical conditions, weight, and most of all a clear mind. In all honesty it took a few yrs for it to really catch up and start affecting the competitive side of me but, at the time, not running was the best thing I could’ve done for my body. Probably not running for 3-5 years was still in my body’s best interest and probably starting to run again a year ago probably wouldn’t have been the best idea either. So I didn’t. It had been almost 7 years since I had to give up that pie and quite frankly I felt it was time I was allowed to eat the damn thing, bite by bite, and in peace (with no napkins to wipe my face when I was finished) Hah! Take that clean, dainty, fancy-esque people!
As many of you are well aware I was filmed for MTV True Life for an episode called “I can’t Have Sex” (yes you can watch it here if you wish..just click)” which focused on the Pelvic Floor Dysfunction and Vulvodynia aspect of my day to day life and intimate relationships. A massive part about my section of the show was about how I started to attend internal and external physical therapy to learn how to help manage the pain, re-teach my pelvic floor muscles how to act properly, and how to understand that much of our own personal xi and vibrational energy plays a part in healing. I started my therapy almost a year ago and although I am no longer in excruciating pain every day of my life, I still spend hours a week reteaching these muscles how to function like a normal 25 year old’s muscles should just so I can continue to act like a normal 25 yr old should…err something. Now, keep in mind that I do, in fact, spend even more time destroying those rebellious muscles because I refuse to continue to let these conditions hold me back any longer. So, am I cured? Hell no…no such thing exists just yet but my pain is managed and my pelvic muscles are kept on a very tight leash which I just so happen to have conveniently handcuffed to my wrist at all times to help keep them in check. With all of that being said, I decided it was time to once again consider myself a runner.
In order to do such a thing …you must run.
I started slowly about a month ago..and when I say slowly I mean it .Usually that whole slow thing isn’t an option for me but I dragged Meg Dollar, my wonderful best friend and roommate with me for the adventure. She was never a runner in her life and when she tried to run…even slowly… it looked like something out of the Goonies. Jaw dropped, foaming at the mouth, and a gate like Sloth. Truly, Sloth’s droopy eye could’ve run a better mile. No lie. I figured it would be good practice for her and also a great way to keep me at a decent pace until I got reacquainted with my legs. Mission accomplished! We worked our way around Central, Riverside, and St. Nicholas parks in increments. Run for 2 minutes….walk for 30 sec and so on. We are now up to jogging a steady 3-5 miles a day and have stopped putting limitations on the terrain. Genius, I tell you. Genius. Around the same time that we started this leg/jog/one foot in front of the other in a quick fashion extravaganza another close friend imparted upon me the wisdom that is The Spartan Race . Dun dun dun……! It was a match made in heaven and after watching their 10 minute video we mentally opted in. I’m happy to say that last night we officially opted in when we officially registered for the official extra day that they added on September 25th @ Wolf’s Pond Park in Staten Island. Officially, I am going to be running an 8+ mile, 15+ obstacle race and officially I not only plan to make it though it alive, but with a hell of a good time for someone who hasn’t been able to run in years thanks to a stupid medical handicap. It’s officially, official and even my pelvic floor muscles, bladder, and broken everything else in my body say GAME ON!
It’s going to be a lot of hard work and I’m totally up to the task seeing as though I am Lady Sparta (Don’t judge me). One thing I have always had in my life is believing in mind over matter and shit tons of discipline (thanks gymnastics). I will do this..and after I conquer this Super Spartan Race..I will conquer the next one..and after that one…I will level up and do the Beast…and after that I will do the Death Race. And then I will probably die…
The moral of this story is that in the end no one has control over my body but me. I’ve let these medical conditions wear me down for far too long and this time…I plan on running closer to every challenge and further away from every cop out. I am one step closer to reclaiming my inner Lady Sparta and stuffing my face with that pie.
Thanks to all who have stood by me through the rekindling of an old favorite adventure of mine and thanks to all those who are helping me to make new adventures….Spartan race people…yes I am, in fact, talking about you. Thanks for adding that extra day…..my soul stopped crying and chugging the metaphorical handle of vodka due to complete and total elation.
Kids if you’re interested in participating in the race check out all the links and also follow them on twitter @spartan_race for updates and offers. Oh yea, click like on Facebook as well.
oh yea…and hey, hey, yes, you. Follow me on twitter as well…i’ll be updating incessantly about the entire experience. @talithaketeri. Oh hell, follow my teammate Meg dollar too…@dancerdollar.
If you don’t have me on facebook yet. Do so!
I AM LADY SPARTAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA
21 Jun 2011
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, relationships, Therapy, Vulvodynia
Tags: Alternative, Energy Healing, Harmonic, Health, Hindu, IC, Interstitial Cystitis, Jonathan Goldman, Mantra, Meditation, meditational breathing, Musical Therapy, Pelvic floor dysfunction, tali, tali keteri, Vulvodynia
For those of you who have been around for awhile I’m sure you are quite aware that I go on and on and on and on about how much I think meditation kicks total ass for helping to control the stupid pelvic/bladder bitch monsters that most of us come fully equipped with. I wanted to share some things that I use on a daily..err..pretty regular basis to help me out along the way. Now here is a super quick disclaimer….some of this stuff has no religious undertones whatsoever and some of the Hindu mantras clearly do. Take the relaxation part from it and use it to your advantage….get the spiritual out of it. It helps. open your minds!
Do not turn this into a belief thing or a religious thing or a political thing or i’ll personally come and kick your ass. This world is getting too damn PC and I don’t have time for it. I’m just sayin…
Just listen to the music, let the words relax you, and heal. Some of it may work for you and some of it won’t. I find that some of this stuff only works if it meshes with you in the right way. Whether it sounds crazy or not, that’s just how it seems to go.
Ok, this one was introduced to me during a spiritual weekend that I took part in back in December. It’s one of those songs that puts me into a totally calm state of mind very quickly. This is my top recommendation for daytime meditation or pain training.
This is a healing mantra which I think is a pretty good choice for people who need all the damn healing we can get. I typically lay on my back with my palms open and facing up while focusing on diaphragmatic breathing. It really helps release the tension from the pelvic floor dysfunction and helps to clear the mind~!
This is by far my favorite mantra of all time. Some people will not be able to listen to this because the frequency it uses may give a feeling of discomfort or unsettle. I’ve run into a few like that in my hunt for the perfect meditational songs but I’m happy this isn’t one of them. The Ganesh mantra is an obstacle breaker and is said to help alleviate..well..obstacles. It’s supposed to be repeated 108 times in a row to have the real affect but this video only fits 98. I just put it on repeat….I listen to this in the morning while getting ready for work and feel that it puts me in the right state of mind to start my day.
The next two are my sleep enablers. This are not Hindu or mantra related but are instead a collection of sounds that cause certain molecular vibrations and therefore raise the frequency that we emit from our bodies. For you non believers…don’t forget that everything in the world is energy. It took a few listens to get the full benefits of this first track because at first it made my third eye want to pop out of my head or instead stab something into my own jugular. But, I learned how to open my mind to it and now put these on repeat when I go to bed. I sleep much better and find that I don’t get up to go to the bathroom nearly as much. I’ve also been able to remember most of my dreams since I’ve started doing this every night. I never used to remember them after I woke up…definitely a plus. Jonathan Goldman is the composer of these two tracks and specializes in Harmonics and sound healing.
This is by him as well but is just a de stresser harmonic. I’m still learning to how open up to this one…but I like it.
I have also started going back to acupuncture on a bi weekly basis. I don’t know how i’ve lived without it for as long as I have. I used to go once or twice a week back in the day. If you’re in northeastern PA Deb Smith is the way to go…This is where I did all of my NAET treatments as well.
If you’re here in NYC please oh please go see Juliette Aiyana, my wonderful acupuncturist/herbalist here. This woman is a god send and one of the most genuine people I’ve ever met. She totally understands the issues a CPP patient goes through and does everything she can to make sure the treatments being used won’t affect an IC patient. Genius I tell you…genius.
Click on their names to go to their websites!
I have some great music but have to put the music on the computer so that I can post it to the player. This shall take some time so bare with me.
I wish you all happy healing. You’d be amazed at what can happen if you open your mind and release some of the pain that we chronic pain patients tend to harbor deep in our subconscious.
Be well and don’t be afraid to try new things to help you relax and find peace!
13 Jun 2011
in Books, Chronic Pain Support, Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, MTV True Life, Pelvic Floor Dysfunction, relationships, Therapy, Vulvodynia
Tags: biofeedback, Ending Female Pain, Health, Interstitial Cystitis, Isa Herrera, New York City, Pain, Pelvic floor dysfunction, Pelvic pain, Pelvis, Physical therapy, Pregnancy, Renew Physical Therapy, Renew PT, tali, tali keteri, Vulvodynia
Let me start by saying that I have tried many forms of physical therapy( both internal, external, and a combo of both) over the course of the past 7 years and for the most part certain aspects of each new PT regiment has worked in it’s own way on it’s own schedule. I truly feel that everyone needs to find what works best for their body and then mold a PT program into your own baby. I’ve said it 10 trillion times that we are all very different and our bodies react to certain treatments in certain ways…either good or bad. I’ve been playing this “mold things into what my body needs” game with myself for a long time now and am happy that this book gives me enough options to do just that.
The Author: (following excerpt borrowed from her website)
Isa Herrera, MSPT,CSCS owns and operates Renew Physical Therapy, a leading healing center in New York City. She has dedicated her career to helping women find relief from conditions such as dyspareunia, incontinence, pelvic pain, prolapse and pre and post-natal complications. Ms Herrera’s approach to healing is holistic, utilizing techniques that tie together mindful-painful body components. She believes that everyone holds the key to their pain relief, all they need is to be shown the way. Her goal is to always empower her patients with the tools they need to succeed on their own. Ms. Herrera’s philosophy is, “With the proper amount of training and encouragement, women can be helped to control their pain or condition, get their bodies back and return to the lifestyles they desire.” She has appeared on national television on both The Regis and Kelly Show and NBC’s Today Show, where she promoted her work and her first book, “The Pregnant Couples Guide to Working Together.” Her second book “Ending Female Pain, a Woman’s Manual” is her latest attempt to spread the word about female sexual, pelvic and scar pain to a wider audience.
Now what I think….yes, yes, yes, yes and yes. The woman definitely knows what she’s doing. Some may say I’m biased because she was my PT but like I said above…I have tried many different types of Pelvic PT and in my opinion, this is by far the most beneficial. Isa wrote the book from a completely holistic perspective and is able to do so because of her extensive knowledge of many different Chronic Pelvic and Sexual Pain conditions. I owe most of my ability to function as well as I do now to her program and to this book.
- The layout is super easy to work with.
- Font is easy to read.
- Wording is easy to comprehend and understand while not losing the medical aspect.
- The chapters are set up in a way that once you read it a few times and learn which exercises work best for you it’s easy to cross reference and find the pages you need when it’s time for a refresher.
- There are sample charts that you can copy and use if you so wish which makes it easy to start your at home treatments on your own.
- The diagrams are very informational and offer a great way to see where you should be putting pressure and where you shouldn’t..also where you should be sticking dilators and where you shouldn’t. Ha!
- The exercises are explained simply and in a way that makes them simple to master.
I feel that this book shows that you can’t just treat one organ with something like CPP. You have to treat the entire system…the whole set of problems, including the way your mind handles the conditions that you have and the pain that you go through. Treating just one is like putting a massive band aid over your vagina and hoping that it stops burning. Not so much. It sets a great example for other women’s health specialists who think that if it hurts when you pee and you take out the bladder the pain will go away. Isa gives great insight into how all the tendons, organs, muscles, and nerves work against or with each other to either cause problems or be friends and not cause pain. It is refreshing to read something like this that doesn’t confuse the shit out of people with all the medical jargon. Sometimes simple layman terms are just easier when you’re in agony. The book doesn’t only cover exercises and techniques for IC
, Pelvic Floor Dysfunction
, and the common Pelvic Pain conditions but also ways to control pain from pre and post natal scars.
My favorite parts in the book go into full detail about how to use a foam roller
to alleviate pelvic floor pain and the pages on vulvar skin care which includes vaginal steams and calendula
oil. I think it’s so important to use more alternative treatments than chemical based treatments since so many of us have sensitivities to things we don’t even know we’re sensitive to and this book offers just that.
I will say this with 100% confidence that everyone with sexual and pelvic pain needs to own and utilize this book. If you are serious about taking your health into your own hands and learning about why sometimes just treating the bladder doesn’t make the pain go away then this is something you all need to try. I use the exercises in this book on a daily basis and truly believe that if I didn’t I wouldn’t be able to do half of the things I’m able to do and I think that’s kinda a big deal…
If you’re interested in buying the book you can do so on Amazon
or at her website
. If you’re in the NYC area and are interested in making an appointment you can also do that here
13 Jun 2011
in Books, Chronic Pain Support, Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, relationships, Therapy, Vulvodynia
Tags: Conditions and Diseases, CPP, Dr. E, Endometriosis, Health, Interstitial Cystitis, Lichen Sclerosus, Pain, Painful Sex, PBS, Pelvic pain, Pelvis, relationships, Robert Echenberg, Secret Suffering, sexual pain, Susan Bilheimer, tali keteri, Vulvar Vestibulitis, Vulvodynia
When I was first diagnosed with everything I remember sitting there being truly thankful for Jill Osborne’s IC-Network and the ICA because it made me feel not so alone. When I started buying all the books I used to buy so I could learn everything I could about these conditions I remember sitting there thinking that a book needed to be released that encompassed everything about what kinds of shitstorms these conditions drag along with them on their coat tails. Not just about why the conditions reek the havoc they do on our bodies but also what they do to our personal lives and our cool factor. I mean seriously…CPP conditions have a way of being the armpit sweat stains on a gray tee shirt in summer or a piece of gravel stuck in the sole of your favorite shoes. Where was the literature that told the inner workings of that story? I waited for awhile but nothing like that was really out at the time. I never was one for patience.
It took a few years but I was able to witness the cultivation of the Secret Suffering project as it unfolded. It was exactly the book that I had been hoping for all that time.
Meet the Authors:
Dr. Robert Echenberg and Susan Bilheimer both took the things that they are extremely good at and used those characteristics to create a book that could relate to many different kinds of Chronic Pelvic Pain patients. Dr. E’s medical expertise is not easily surpassed and it shows in the way that he explains the logistics of these conditions in the book. Susan is a genuine people person and is able to see just how these conditions affect one’s personal affairs and state of mind in a non-medical sense. I have the pleasure of knowing both of the authors personally and can honestly say that they put their hearts and souls into this book. It encompasses everything that suffering in silence because of a chronic pelvic pain condition is all about and gives an amazingly accurate inside look at how these conditions affect a person’s intimate and personal relationships. With that being said….here’s what I think.
Many of the stories and quotes in the book come from personal interviews with patients and doctors and an online survey that was sent out to chronic pelvic patients. The stories are very personal and cover many of the topics that mainstream medical condition coverage won’t even touch. What I really, really, realllly, respect about these personal stories is that they covered all different types of scenarios. There is a chapter based on the issues with chronic sexual and pelvic pain in a lesbian relationship. I feel that it proves a great point that there doesn’t have to be a penis inserted for there to be excruciating vaginal pain. There are way too many people that think that painful sex is only caused by insertion. This book even goes so far as to talk about how excruciating orgasms can be for some people. That is something that I feel is really important when trying to explain to those non-believers that this shit exists. SHUN THE NON BELIEVER.
There is another chapter that touches on the husband’s point of view. We often hear about the women who have been married for years with families and careers that have to get put on hold because the pain is so severe. We hear about how much it pains them to feel like they are failing as a wife or as a companion or even as a mother because of the debilitating pain they endure on a daily basis but we don’t often hear a first hand account of how much it hurts the husband…to have to watch the woman he loves suffer so much. I feel that the authors really hit it on the head with this one….this is something that NEEDED to be discussed.
Something else that makes this book uber useful is the fact that they explain how certain organs,tissue, ligaments, and muscles can cause sexual pain. I think it’s a massive misconception that pelvic pain means pain in the pelvic area only. Dr. E explains this very well in Chapter 2 (specifically page 6) that pelvic pain is in fact not just pain in the pelvic region but is an umbrella term used to describe the plethora of conditions most CPP patients are usually stuck with. The book includes pictures and diagrams that show what muscles are involved in putting more pressure on the bladder and where nerves are placed that sometimes make it hard for us to sit for long periods of time. It’s an important concept. You should all learn this stuff if you haven’t already.
The bad stuff:
There isn’t a ton that I don’t like about this book. There’s actually not even a 1/4 of a 1/3 and an 1/8 that I don’t like about it, but as someone who does a lot of marketing and advertising sporadically all over the place there are some things that hurt it. The fact that it came out in hardcover only was a massive problem. I am smart enough to know that the authors probably didn’t have much to do with the fact that the publisher was charging something like $45-50 for a copy but it still didn’t make it easy to get your hands on. Afterall, most Interstitial Cystitis, Vulvodynia, Lichen Sclerosus, Vulvar Vestibulitis, Endometriosis, and CPP patients are trying to afford treatments, meds, and a shit ton of other stuff that is vital to their survival and just don’t have the extra to buy a book for that much money. The good thing is that although it took a year or so there is now a soft cover available with much better cover art and at a much more affordable price somewhere around $20 now I believe. Yay. That’s good for us.
The only other thing that disappointed me was the fact that a lot of people didn’t even know the book existed! There just wasn’t a lot of advertising for it before it first dropped off the press. I’m hoping that the snowball has continued to roll since it came out because it is definitely a must read for both CPP patients and their loved ones.
If anyone is interested in checking out Dr. Echenberg’s clinic or in buying the book check out this website
Also, If you’re on Getglue go check in! No stickers or anything but it’ll help get the word out!
If you’ve already read the book please comment below with your thoughts and feelings as well. I’d love to hear what everyone else thinks.
12 Jun 2011
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.
01 Mar 2011
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, prescription meds, Therapy, Vulvodynia
Tags: acupuncture, Interstitial Cystitis, Medicine, NAET, Nambudripad Allergy Elimination Technique, Pelvic floor dysfunction, Pelvic pain, Physical therapy, Urinary bladder, Vulvodynia
This title is my most favorite statement ever…It used to make me upset and now it is just the greatest part of my day. If you’re not part of the IC or any other chronic pelvic pain community you’d be amazed at how many people say this to other people just because they don’t understand the conditions and because they don’t do their own research. Last I checked our DNA made us all different which can only mean that not everyone’s stupid, rebellious, suicidal, bladder is going to react the same to each situation. I want to give everyone who makes this comment a biology and anatomy physiology book and scream GO LEARN ABOUT YOUR BODY!!!!!!!!!!But alas, I don’t have the money to buy all of these people text books so I shall just go on and on about it on my wonderful blog. HA take that economy.
I’ve spoken with many of you about how I manage my IC, Vulvodynia, and PFD flare ups. I get tons of questions about why I can get away with some things that a lot of chronic pelvic pain people cannot. The truth is (aside from the fact that all body types handle things differently) I handle most of it herbally and alternatively. I spent the first 3 years of my IC career (I call it that because it’s like going to school for the wrong thing…you deal with it for years and years before you get your degree, have shit tons of debt from it and in the end you hate it anyway and want to go back to school for something you actually enjoy) playing the western medicine game. Did all the procedures. Changed the diet. Tried the nerve blocks. Had enough pill cases to put my grandmother to shame. Felt alone and got really skinny from not being able to eat anything (which I think I would take back at this point…was definitely the best “get skinny” plan I’ve had yet. ) This is helped me a lot. You will never hear me say that I believe that any of this stuff is useless. I just think it needs to be modified.
I truly believe that if I hadn’t gone on all the meds, went through the therapy, and had all those bladder instills, and nerve blocks, that my bladder would not have been able to heal itself enough to be able to be maintained by the natural stuff. In my case I feel it was necessary. My theory is that when I did the diet (and I really did the diet…only ate pretzels and 2 gallons of water a day for like 3 months) the GAG (glycosaminoglycans) layer of my bladder started to heal itself. I was also on Elmiron at the time and used the hydroxyzine to help control the histamines produced by mast cell reproduction. I rested and told myself every single day that one day I would be able to control my bladder and not the other way around.
Most people ask why I can get away with eating the things that I can without dying and the truth is that when I started bringing food back into my diet I didn’t have full meals and therefore figured out exactly what ingredients messed with me and just how much of something that would normally be considered bad I could get away with before my bladder started screaming at me. I would do it on a 1-2 hour interval. Wake up eat a banana. If it didn’t bother me within an hour or two I would check it off in my journal that the banana and my bladder just might be able to be friends or acquaintances, probably not a serious relationship just yet, but friends at least and then I would pick the next food or liquid I wanted to find out about. Within a few months I knew exactly what would throw my into a full flare or what would just bother me for an hour or so and could be controlled with baking soda water or prelief. I also knew what was totally safe and I also knew what I could and couldn’t push the limits on. Once I knew all that I started keeping track of what treatments controlled what type of flare. If it was a stress flare I was totally out of luck ( I didn’t know about meditation, relaxation, acupuncture at this point) So I would do my best to keep the stress down. If it was a sex caused flare I resorted to meds for the same reason as the stress…I didn’t know any better. If a liquid something caused my flare I would control it with liquid (it moves faster through the body) and either drink 2 gallons of water really quicky with as much prelief and baking soda as possible. It was a pretty good game plan that worked more often than not for me. I used this method for a few years before I got bold and started overdoing myself…then the pill addiction came into play. After that, there was no more room in my mind for meds of any kind. I wanted them all gone and that’s exactly what I did.
The thing that changed my IC life the most in the beginning of the western to eastern medicine transition were the three books by Catherine M Simone (To Wake in Tears, Along the Healing Path, and Awakening Through The Tears). It made a world of difference and taught me how many other options I had. I began acupuncture, started NAET treatments, did energy healing, internal physical therapy, pelvic floor therapy, learned about meditation, and realized the the biggest culprit in a chronic pain patients life is sitting there thinking how awful and painful it is in the middle of a flare. All it does is make you tense up and put more pressure on your bladder…also a body can’t heal in the midst of negative thoughts. Once I mastered that I got away with a lot more….my bladder learned to behave just a bit better and I learned how to work with and not against a tri-polar/seemingly schizophrenic bladder. It works for me. But that doesn’t mean I don’t have IC….it just means IC doesn’t have me.
Now, back to the title of my newest rant. Yes I can get away with a lot of things but that it because I have it down to a science. So, yes, I drink but am limited into what I can have. If I touch any type of dark liquor I am in bed for days curled up in a ball wanting to kill myself. Dark liquor and my bladder got divorced in 2006. Yes, I can eat all the hot peppers and hot sauce that I want…and I do because it can knock a flare out of my system in less than 3 minutes. Look up what capsacin can do for histamines and pain levels before you judge! Also, with the hot peppers be careful…what I’ve found by talking to people about this is that if you were a hot pepper eater your entire existence before you were diagnosed you can probably get away with eating them now…if you were only a mild hot pepper person it’ll probably make your flare worse because the bladder looks at it as a foreign, unknown, devil horned, acid. Check it out though…It’s interesting. One thing I haven’t been able to get away with is running which absolutely breaks my heart. I ran my entire life and I miss it every day…oh well. I just recently was able to get back into dancing but it’s something that my bladder and I are still in mediation about. It says no..I say I don’t care. It’s none of its business. It took away my entire active lifestyle therefore it can’t have both the house and car in the divorce…I have to be able to keep one and if dancing again is equivalent to the car in the settlement, I’ll take it. I still can’t do orange or pineapple. I definitely can’t get away with tomato sauce (unless it’s homemade, which is an interesting thing) Dark beer kicks my ass as well…should be interesting when I get to Ireland and desperately want real Guinness. If I try to take any kind of supplements I may as well put the gun to my own head….my urine ball (also known as my bladder lol) genuinely hates vitamin C, D, Calcium, and zinc.
So the moral of the story is that just because you see another IC patient getting away with some things that you can’t doesn’t mean that their IC isn’t real it just means their IC is different. We all have so many other conditions walloping us every step of the way it’s hard to say that there are specific symptoms for everyone. Hell, I know IC patients that have absolutely no bladder pain. They just pee over 400 times a day and have massive amounts of pressure. I know many IC patients that honestly can’t walk or get out of bed. Either way, IC is still a moronic lil’ kid throwing a temper tantrum at its own discretion. Our bodies are so complex and extravagant that there’s no way in the world we could know how each factor would affect each one!
Be nice kids! Stay strong..make that bladder of yours aware that it lives in your body and not the other way around. Figure out what works best for you, try everything and try to keep the judging to a minimum. Not for my sake but for yours. All it does it bring more negative energy into your life which only makes your healing process move at a slower pace!
15 Dec 2010
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.
05 Dec 2010
in Chronic Pelvic Pain, IC, Interstitial Cystitis/IC, MTV True Life, Pelvic Floor Dysfunction, Uncategorized, Vulvodynia
Tags: Conditions and Diseases, Dyspareunia, Health, Interstitial Cystitis, MTV, Pelvic pain, True Life, xanax
Ahhhhhhhhh…..that’s all my brain seems to want to say today…Ahhhh. Ah. ahhhhhhhhh. Lol. I am having a super hard time believing that December 6th is actually almost here. It feels like it was just yesterday that I was getting the call from the production team to let us know that we finally had an airdate for the show. Usually at that point the human brain does one of two things…it either panics and says “ahhhhhhhhhhhhhhh there’s no time must hustle” or it tricks itself into thinking that there’s a lot of time and we can worry about the big stuff closer to the air date. Neither of these are the way to go.
I think about how much we’ve all put into this show from every aspect. Dr. E and Susan got me the MTV contact to begin with….Isa treated me at Renew Physical Therapy while Boom and I were filming. Boom put his entire life out there to help me and my cause which is truly admirable and I will be forever grateful to him. (Check out his blog too, by the way, the man is an excellent writer) My other roommates opened up their lives as well just so that this project was able to happen and not to mention the other 2 couples who also shared their stories on the show. Just for the record. I have no idea who they are or what their stories entail but I admire you as well. This was a uber hard topic and anyone who was willing to out something this personal on national tv definitely gets my respect. Thank you for sharing your stories! MTV chose to do this taboo of a topic and they also get my respect. Even if IC is not mentioned or Vulvodynia doesn’t make the cut…my story was still about painful sex from a CHRONIC PELVIC PAIN patient angle. It may seem like an umbrella but ya know what kids? As long as the world gets to see that Chronic Pelvic Pain reeks havoc on all of our lives in many different ways regardless of the condition that causes the CPP I’m totally ok with that and it’s a start. We can only get bigger from here! Don’t forget that! The Back Fence bar did us a huge favor by helping us out with the venue for the opening night fundraiser…donations are definitely going to be flowing that night which was my goal from the jump!
I am so excited to be able to donate money to some of the best organizations out there…if you didn’t know where the money is going I shall tell you now.
Interstitial Cystitis Association- http://www.ichelp.org
Interstitial Cystitis Network- http://www.ic-network.com
National Vulvodynia Association- http://www.nva.com
If you haven’t heard about these places please check them out…you’ll see immediately why I want the money to go to them. It’ll be put to guaranteed good use.
So now that I rambled on with my thank you’s I’m going to get back into how i’m feeling at the moment….
excitement, terror, nervousness, gratitude, elation, and humility are just a few of the emotions that keep raging through my body which I guess is ok considering everything that’s going on. It’s totally safe to say that my emotional stability is going through a plethora of uneducated madness. Do this, call this person, stop eating, realize that this is real, hide, seek, smile, laugh, send invites, write blogs, it’s like my thought process is on warp speed and is definitely not able to complete a thought for the life of me. But i’ll deal.
I am excited that it is finally here..excited that we all managed to pull this off and excited that this may be the beginning of our awareness campaign. My thoughts are terrorized by the fact that I feel like I have the entire world on my shoulders right now and that everyone is counting on me to ensure certain conditions get more play than others. I am nervous to see what kind of image is going to be portrayed on this show and if I’m going to need to go in hiding for awhile until people can wrap their heads around what we all go through lol. I am so f’in grateful for everyone’s continued support and love. If it wasn’t for you all I may have gone into hiding awhile ago…(which would’ve been interesting because I’m definitely that person that may have the best hiding spot but is still talking so everyone finds me in the end anyway) Elated is not even the best way to describe how I feel when I think about what this could mean for the CPP patient. We have to fight for this…I will for as long as I need to. At the end of it all…I’m just me. I have no ulterior motives and all I want is help for everyone who is suffering. I want you all to be able to live happy, pain free, lives and if I can help with that in anyway..I got your back.
So once again I say AHHHHHHHHHHHhhhhhhhhhhhhhhhhhhh. How the hell did Dec 6th get here so quick? And how much Xanax can I take before my brain turns to mush? And what if I look like a total asshole? And ya know what…I need to calm my ass down and just smile. We did it. Regardless of how anyone looks..it’s a start. I know I can hack it. You guys got my back? I don’t even know why I panicked to begin with. I got this. We got this. Just smile.