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.
04 Aug 2012
in Chronic Pain Support, Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Pelvic Floor Dysfunction, prescription meds, relationships, Therapy
Tags: character trait, Chik Fil A, Chronic pain, destinee hooker, facebook, fiance, Games, grocery bags, Humor, icramblings, judgements, olympics, opinions, reason, Recreation, religion, revelation, roommates, tali keteri, taliketeri, taliverse, Trader Joes, twitter, United States, wild wild west
I often go on about how reasonable of a person I am…and I’m sure a ton of you out there sit back and say “Well if she’s really reasonable why does she feel the need to tell us…clearly she’s just trying to convince us that she is, in fact reasonable, as opposed to really…like realllyyy being reasonable. ” Right. I get it. It’s the human way. If anyone has to bash some character trait they possess into our heads over and over it usually means that there’s denial involved. I totally understand that method of thinking. Ya know why? Because I’m actually really fucking reasonable.
Ha, like that one didn’t ya? Slipped it right in there.
I hadn’t planned on making this an uber long rant like I usually do but I feel that once I get my fingers going I’m not going to be able to stop. So bear with me if you’d like…and if you don’t like to bear with, then do me a solid and don’t go all wild wild west on someone on facebook because you don’t agree with the fact that they like guns or the democratic party. Find something better to do with your time. Read a book. Run a mile. Help an old lady carry her damn grocery bags…but do not stop reading this blog just go to be a douchebag to someone because you don’t like or agree with their beliefs or opinions. It’s stupid…and frankly it’s not what this country was every supposed to be about. Copy? Good. Cleared that one right up now didn’t we?
Back to this reasonable thing that I keep going on and on and on and on and on about. We all need to be reasonable. I’m not saying we need to be 100% accommodating to other people and what they try to make us believe or not believe. But, we do need to be reasonable and here are a few reasons why.
Most of the time my housemates, (the bestie and fiancé included) look at me like I have 12 heads when there’s a debate or argument going on. It’s not because I’m throwing things or cursing like a trucker (even though most of the time I am) but it’s because when the big shit really goes down I am not nearly as mad as I would be when the lil’ stupid shit goes down. For instance, lose your phone every 5 minutes and not be able to get in touch in case of emergencies = stupid shit. I will scream and yell over this..mostly because it was preventable and excuses of “well, my entire family always loses their phones, it’s in our blood” are ridiculous. Be responsible…bottom line. Trip over a cat in the kitchen and break my favorite mug that I’ve had since a I was a kid…not gonna be so mad. It was a genuine accident. Not so preventable. Unless you’re capable of levitating in mid trip over the fluffbucket and manifesting a cloud of cotton balls on the tile so nothing gets hurt..which we all know most humans can’t do…the Taliverse doesn’t go apeshit. I also get looked at crazily when there is a genuine fight going on and I forever play devils advocate. It’s not that I agree with the person who ran over your foot with the cart 76 times while shopping for groceries in Trader Joes and I’m not saying I wouldn’t be flipping out over it as well, but I will sit here and try to make you see that maybe something was going on in their world that caused them to not pay attention to their surroundings. I also may not be totally on board with the fact that someone stole your lunch at work but I will consider that maybe just maybe they don’t have the money to feed themselves and are too ashamed to admit it…or maybe they’re just a dickmonkey who likes to steal people’s shit. Truth is, you may never know…but it’s because you don’t know that makes assuming it’s one or the other never ok. Also, killing them may not be the best option, after all you guys sometimes try to kill me when you’re having a shitball day. See where I’m going with this?
The thing of it is, more and more of our generation spend the majority of their time online and when most of your time is spent on social media networking sites, you see things. I’m a natural observer. Came with the genes. Thanks parents…you have truly enabled me to see how cruel so many people are in this world. The catch is that being this observant has also granted me the insight as to see why people could sink into the cruel demeanor that they portray. Once again, I get it. What I don’t get is the things that people are so cruel about. It blows my freakin’ mind. Truly. When social media sites got so big people got to hide behind a screen name. We see it all the time in the IC world. People are horrible. They feel that because it’s their fingers spelling out the words they can say whatever they want about whatever they want because they don’t have to look you in the eye and say it. I’m quite sure that if they did have to say the shit they say on the forums to our faces we’d hear the fucking birds chirp. It’s one of my favorite things to do in the world. Find a person who talked shit online and ask them to tell me again what their issue is with me. They never can. Plus, I’m much scarier in person.
I always wondered why it ended up this way but while I watched everything go on and on and on this past week with the olympic athlete whose last name is Hooker and how much shit she’s getting from people on twitter, fb, etc because clearly if her last name is Hooker that means she MUST BY ALL MEANS be a real whore who sleeps with people for money (Really people?) it hit me. The whole thing hit me…and it’s really quite simple to explain. The reason why I can sit here and understand why this situation sucks for this woman…(I mean, it’s supposed to be the best time of her life. She made it to the olympics and stupid people are torturing her because of a family name that she is indeed quite proud of) is the same reason why I can sit here and try to understand the assholes who have loads of crap to spew on the fact that they think her last name doubles as proof that she’s a whore. It’s because you can never look at things, no matter how terrible, from both sides and walk in the other party’s shoes if you have never in your life been so low that you can barely fathom speaking about it. I have been made to feel so crazy that I have done some unthinkable things and said some horrible words to people that I cared about. I have been in so much pain that I have plowed my shopping cart through the crowd at Trader Joes because I just didn’t think I could stand on my feet anymore. I have had men do some terrible things to me and in turn have turned around and destroyed the next man that came into my life out of subconscious revenge. I have lumped in my bed and wallowed in self pity for weeks on end because I didn’t know how to face my medical conditions in public. I have drank entirely too much to try to hide the emotions I was feeling that I wasn’t ready to deal with. I have pushed people that I love away because I couldn’t figure out how to tell them how low I was. I have done a lot of things. I have done things that other people do every day and get judged for with the quickness…and I think a lot of us have.
So why are we so quick to judge? Why are we, as a human race, so quick to sit here and say “OMG, all she ever does is cry” as opposed to saying “hmmm, I wonder what is so hurtful in this woman’s life that upsets her this much every single day?” Why can we not fathom how human beings can be pushed to do some terrible things or feel some horrible way about their lives?
We are made to feel.
And we do.
We were born with emotions and when things happen to us in our lives certain feelings get heightened. Certain feelings go away all together. Why is it so hard to believe that maybe just maybe when people do terrible things to others it’s because others have down horrifying things to them? Is it an excuse. No. Never. But, when you are already feeling low and someone comes along to kick you while you’re down…you can become something you never planned on being. You can become terrible. You can become the catalyst for someone else hitting rock bottom. All I’m saying is that at the end of it all, we need to be reasonable. Not everyone is going to believe in the same things just like this whole world will never agree on a religion, or a sexuality, or a dress code, or the same type of pet. But that’s not up to us to decide. All we can do is respect it. Respect what other people believe in even if we don’t. Respect that some people aren’t strong enough to hit rock bottom and bounce back up on their own and respect that some people are.
Use reason people and use it well.
Maybe my revelation was just my revelation…in the sense that I have been all of those terrible things because of things that were going on in my life or maybe my revelation is a common one that people have often. I don’t know and I don’t care either way. All I’m saying is that picture yourself in someone elses shoes when they do something unthinkable and then think about what and why could have made them act that way. Maybe you’ll come up with something like “they were bullied” or maybe you’ll come up with “they’re mentally unstable…but were they getting treatment and if not then why not?” Maybe you’ll come up with a theory as to why someone lays in bed all the time and wallows and maybe you’ll figure out that maybe just maybe they have a chronic condition that no one understands and doctors believe isn’t painful. See my point? You never know what someone else has gone through. All you can do is look at what you’ve gone though and remember how it made you act while you were going through it….once you wrap your mind around that you tend to be a lot more reasonable in crazy situations.
As for the lil’ stupid situations…well, I haven’t quite figured that one out yet. Any suggestions on that? Send em’ my way.
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.
24 Apr 2012
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, MTV True Life, Pelvic Floor Dysfunction, relationships, Vulvodynia
Tags: Blog, derek smith, engagements, happiness, Health, Humor, icramblings, MTV, Pelvic floor dysfunction, People, shitshow, tali, tali from true life, tali keteri, taliverse, True Life
I have always been a pretty humble individual. Never one for rubbing shit in people’s faces or trapsing around flaunting shiny new things all over the town..mostly because I really don’t like to make people feel like shit but also because I never really had too much to rub in people’s faces in the first place. The way I always looked at it is that someone is always better at something that someone else…and someone else is always worse at something than the next person. The truth is, we are all good at our own things and we all suck at our own things. It’s a matter of how we react to each person’s differences that make us the king of douchbagastan or a generally understanding person. It can really go either way. I always chose to not run around screaming about the things I was good at….unless it was talking or any other form of word vomit that comes out of my face. That I will claim and run around doing… Always. Clearly….Have you met me?
I can’t help it.
But where I’m going with this is that I don’t know if I’ve ever been so unbelievably proud of something that I felt I had to run around and tell everyone about it. Some may call me out on that one and say that I blabbed about the MTV show, and I did. But, it wasn’t for the purpose of bragging about my own experience on that one…it was a matter of trying to get money raised for IC organizations and people to recognize that these conditions do , in fact, exist. So with that being said, there really hasn’t been much that I’ve enjoyed rubbing in people’s faces. I also have a really hard time expressing happiness around those who are having a really hard time at the moment. I feel that even though the people who are going through shitshows may love you dearly and support you they don’t really want to hear about what’s going good in your life. Not because they don’t care but because it’s too hard for them to deal with right then… It’s not a dick move and it’s not because they secretly hate you. It’s just that at the end of it all we’re all human and shit hurts. We get jealous. We tend to resent. We sometimes even go so far as to subconsciously wish bad on others who are having a good go of things. Some of you may sit here and say that people that do this are assholes. That the jealous, resenting, ill wishers aren’t real friends or don’t care about anyone but themselves, but the truth is that sometimes a good person has so much bad shit happen to them that at the end of the day their heart is still in tact but every emotion that can still find its way out of the brain and into the world is a bitter jaded bitch. It’s unfortunate. It’s unintentional. And it’s really hard to have an aspect of your life fuck up every single day without getting a single moment of downtime to catch up, process the shitshow, learn how to deal, and get over it before the next round of giardia ridden bullshit explodes right into your eyes. I don’t blame people for this. Hell, I’ve done it. I’ve been that person. Maybe that’s why I’m so understanding of the mindset here..whether intentional or totally on purpose. That’s one of the reasons why I’ve been in hiding. Just one. All of you miserable bastards better not go getting your damn hopes up that my hiatus was solely because of your bitterness. There are other reasons involved here as well. I just had to touch on this one first because it’s the one that gets misconstrued the most.
The next “excuse” (cuz i’m sure that’s what you’ll all call it anyway lol) on my list of things to touch base on about why I fell off goes a lil’ somethin like this. I have never been truly happy..and if I was I was too busy wondering when the so called “happy” was going to shit out and die to even realize that I may have been even a lil’ happy because at the end of the day I’m a pessimistic asshole. So therefore, I have never truly been truly happy. Get it? Ok…
This happy shit…new to the Taliverse and it baffles me….Why?
A. I don’t know how to handle it properly.
B. I don’t know if i’m allowed to feel this way… every time I get a bit of happy some other part of the Taliverse falls apart and creates a hole in a parallel universe. My acceptance of good things = a downfall of other things. I’m a jinx to my own life. Always.
C. I’m still not entirely sure my being happy is real. I mean that in a sense of that I’m not sure that I’m not dreaming. Or that it’s not like the movie repo men and I’ve just suffered a massive brain injury by a meat hook and my best friend has hooked me up to a perfect dream system for the rest of my vegetative state and it’s all in my mush brain dream cycle.
D. It’s taking me a long time to come to terms with the fact that I do deserve to be happy and that I shouldn’t feel guilty about it ..Well…shouldn’t feel guilty if I’m really not dreaming and all of this newly found happy shit is real at least.
That last one has to be the hardest. I mean you’ve clearly read the first 2 paragraphs of this lil “hey i’m back” piece (unles you’re one of those fucking weirdos who skips to the middle of an article just to get to the climax…and in that case. you’re a bunch of lazy asshats) and you’ve read that I don’t like to flaunt any newfound happiness around but now on the same hand when I realize that I’m not dreaming and there is some amazing shit going on in my life right now I feel that I do deserve to happy and that I shouldn’t feel guilty talking about it or telling you people why I’ve been missing in action. It’s a hard thing to balance. And, I feel like it makes me seem just a bit hypocritical. I hate that. I truly do. But, I don’t know how else to do it because this is all new to me. I’m learning here…so please try to be just a bit less judgmental than you all usually are.
I guess i’ll just get into where the hell I’ve been…I’ll tell you as much as I can in as little as I can without trying to seem like a cunt-satchel who is rubbing shit in just because I can. What’s been going on in the Taliverse is uber important to me and it’s only fair that I share. Afterall, I never hold back and lord knows that i’m an open book when it comes down to what’s going on and how I really feel about things. Some of you may actually give a shit where I’ve been and some of you could give a fuck less and are just reading on because it’s going to give you something to talk shit about over facebook chat tonight. I don’t care which category you fall in. If you give a shit…thanks. If you don’t…just make sure that you’re shit talking later is up to par. If you’re going to do something…commit fully and be confident in your choice. I hate when people only jump halfway in the pool before screaming their way out because the water was too cold on their ass cheeks. Man up kids. man up.
I fell in love…
I got engaged….
I’m planning a wedding…
And apparently turning into a real girl along the way….
I’m so unbelievably happy I disgust myself….
I’m being selfish in that I spend every extra moment that I can with this man and honestly nothing else really matters right now (except figuring out the new onslaught of medical problems that have plagued my reproductive system) …
I don’t want to think about sad things or bad things or jinxy things or music things or family things or animal things…No time for career things or drama things or laundry things or shower things.
I just want to sit here and freakin’ enjoy being truly happy for once. I want to not feel guilty about it. I’m trying my best to not feel guilty about writing this post but a lil bit still sneaks in there and kicks me right in the jugular for feeling like rubbing it in.
I haven’t been around…I know. Not because I don’t want to be involved anymore. Not because I don’t care about the cause. Not because of blah blah blah . Only because I wanted to sit here and take it all in. Soak up the only good thing going on right now…there are shitshows that hit me every single day but all of a sudden it doesn’t seem so bad anymore because I have someone to share it with. I deserve to enjoy that. After all of the shit that I have had to be the “tough guy” through during my entire life I realize that if all of that hadn’t happened I wouldn’t be the person I am now and I wouldn’t have been in the right place at the right time to meet the person I’m supposed to spend the rest of my life with. I would go through absolutely every ounce of shit that I have gone through during the past 15 years over and over again if he was the end result and you’d never hear a complaint out of my mouth (hard to believe I know).
So, I am sorry that I’ve been so neglectful. And I’m sorry if this rubs people the wrong way. But, I’ve been hiding in my happy. Away from anything that could possibly bring that happy down a few notches. I wanted it to stay right at the uber ridiculous happy level it was at. So I hid.
I wish for everyone to find that something that makes them this happy. Whether it be a dog, a book, another human being (no matter the sex). …EVERYONE derserves to be happy. No matter what mistakes you’ve made in your life as long as you’ve accounted for them and acknowledged that you fucked up and tried to rectify.
Afterall, life is about learning from your past and not letting shitty history control your future. It’s a fucking hard thing to do but my god, if you can do it… DO IT and fucking DO IT WELL. It changes everything.
22 Jan 2012
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, Obstacle Racing, Pelvic Floor Dysfunction, relationships, Vulvodynia
Tags: a rodge, aaron rodgers, chiropractor, doctor who, great dane, Health, IC, kidnapping, Mechanical bull, Neil Gaiman, ood, Pelvic pain, spartan Race, tali, tali keteri, Tempur-Pedic, universe, Weight loss
I want a new body pillow. Preferably a Packers one.
I want to be able to run 7 miles a day, eat healthy, stop drinking, quit smoking, and lose some damn weight. I’ve already managed the first 4 things in that list on my own…help me the hell out with the weight loss…yea?
Lottery. Lots of it. That. Is. All.
New hips. Mine are already destroyed and I need new ones by the age of 30 anyway. Just do it in my sleep when no one is looking.
A tempur pedic mattress. Or a live in chiropractor. Doesn’t matter. Just pick one of them. ok.
A tattoo designed by Neil Gaiman. By midnight tonight.
A 2nd job that I actually make some money at.
A guitarist so that I can sing some gigs down in the village.
5 new bags.
3 more pairs of Brooks Cascadia 6′s.
To get ridiculously ridiculous with A-Rodge, preferably in a bar, with a mechanical bull, a bottle of vodka, spandex pants, and green bay packers fog horns.
A man that is actually a man…and not a raging coward.
A season pass for Spartan Race.
My own radio show.
A harlequin great dane.
An available cure for IC and every other Chronic Pelvic Pain condition.
A stick that I can use to beat every moronic asshole in the universe.
To be Doctor Who‘s companion for the rest of my life and to have an ood sing to me every night when I go to bed..
I trust you’ll start working on this immediately….
k. thanks. bye
15 Jan 2012
in Chronic Pelvic Pain, IC, Interstitial Cystitis, Interstitial Cystitis/IC, MTV True Life, Pelvic Floor Dysfunction, Vulvodynia
Tags: IC, tali, tali keteri, Vagina, Vulvodynia
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.
27 Sep 2011
in Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Obstacle Racing, Pelvic Floor Dysfunction, Vulvodynia
Tags: IC, IC Awareness, Lady Sparta, Meghan, New York City, Sparta, spartan Race, Staten Island, super spartan, Vulvodynia
I can’t believe it’s over. That’s what Meghan and I have been walking around the house saying to each other since returning home from Staten Island on Saturday night. It’s over. Damn. Now what? It feels like we’ve been preparing for this race for years and although I know that we really only started training for it 4 months ago it’s become a very important and accepted part of my daily routine.
Eat this….it’s Spartan Training.
Don’t eat this…Spartan Training.
Dunk my head repeatedly in cold bath water…I AM SPARTA!
Run to work…Spartan Training.
Don’t dare take the elevator at work…yes, Spartan Training.
No holding on to the poles or rails on the subway….no pin balling off of other straphangers either…this is balance work..and Spartan Training.
Run around NYC with a pet rock …Spartan training (and bonding with nature)
It seems like every single thing we’ve done for the past 4 months we have counted as some form of training, whether physical or mental. I’m happy to say that no matter how ridiculous it all seemed it paid off in the end. All that crazy shit that we did or didn’t do in the name of training apparently was exactly what we needed to be able to do what we needed to do on the course. I don’t have a single regret. Except for the fact that it’s over. All I can really say about that is….meh.
If any of you read my “Reclaiming my Inner Lady Sparta” piece that I posted awhile back you understand just how important this was to me. I’m not going to reiterate and go into that here but I will say that accomplishing this somehow means to me that I really can do anything and that’s a mindset that has been misplaced in the Taliverse somewhere along the course of the past 5 years. If I could prepare myself for this race and follow through then I can apply that concept to anything else in my life…and I plan to. I also plan to apply that to alot more obstacle races/mud runs. I wanna be good…like really really good. I wanna win damnit. Give me a year and I’ll have enough under my belt to do so.
On another note, there were so many amazing things that went on during this race that I don’t even know where to start. Firstly, I want to thank my roommate and best friend for always sticking by me no matter what form of craziness I drag her into. The poor girl couldn’t even manage to run 5 paces without injuring herself or looking like an orc on crack before I got ahold of her and she ran across that finish line with me mostly in one piece. I’m proud…..and there may be a tear or 2 involved (don’t tell her that). Secondly, chivalry was definitely not dead during this race. 99% of the other runners were generous, genuinely concerned about other people’s safety, and a shit ton of fun to run alongside during various parts of the course. Good job kids. Good job. That always leaves me with a warm and fuzzy feeling (which is much different than my usual rubbing alcohol tipped pins and needles feeling that people typically leave me with). I approve. Thirdly, it was an absolute blast. There is nothing better than rolling around in 8-12 inches of mud, swimming through 15 ft long drainage pipes, and getting all battered and bruised along the way. That is my type of extracurricular activity. I’m in love. For real. Last thing that really really made me proud to be a part of this race was the fact that all the money earned goes somewhere amazing. Most of it goes to various military related organizations such as Homes for the Troops and Help for Heroes which to me is the greatest thing ever. They fight for us…we need to fight for them as well. That’s the least we can do. Running 8-10 miles and doing obstacles by choice is nothing compared to what they endure overseas for us and for that I salute you. Aroo! ***Stands up and claps for the entire Spartan Race Organizational team before bowing and giving a silent Aroo…you guys truly are the freakin’ coolest. Thanks for the opportunity to help myself and to help others. Very cool. Very cool indeed.
My initial goal for myself when I signed up to do this race was to finish it. For once I took my competitive side out of it and decided not to push myself too far too quickly. Afterall an IC bladder who has been in fat ass mode for the past 8 years may not tolerate this form of torture too well and I didn’t want to push it…well not to the point of no return anyway. I would like to think that after all these years dealing with IC that I know my body well enough to know what it can and can’t recover from. Also, how to fix it when it does decide to be an asshat. Luckily I was still able to run the race at a semi competitive pace (I promised Meg I would never leave her in the dust on this one) and still preserve my bladder. It worked out quite nicely. We finished in 2:42 which is pretty good for someone who hasn’t competitively ran in 8 years and someone who couldn’t have ran a mile 4 months ago if someone paid her. I’ll take it.
It was a success…and something that I plan to do as often as I possibly can until the day that my legs stop working, which is hopefully years and years and years from now. The promise that I will make to you guys is that every year for the entire month of IC awareness month (whenever that may be if we decide to change it again) we will run in our blue and write IC facts all over our bodies. My races will always be IC motivated. I will always wear my teal IC wristbands and will always talk about it. Will my hair always be blue…no. I’m over it already because I look like a smurf every day at work with my blue scrubs lol. But as long as I have the ability to rock the blue…I will. I’m running for IC and I’m running for me. It just so happens to work both ways. Hmm…maybe I’ll have to work on my own IC oriented race. And the wheels have officially started turning.
So the moral of the story is simple. Set your mind to something and you can do it. It may not be easy. It may not be pain free. But by damn it’ll be fuckin gratifying at the end of it all and then crawling to the bathroom 500 times will seem worth it. I know it was to me. I’m a new person after this race. Not only did it big my ego up a bit (not sure I needed it to be bigged up at all lol) but it also gave me a reason to stay healthy and really get in touch with my body and mother nature. I think people forget how close those 2 things are in the grand scheme of things. I also would love to go pro as an obstacle racer. Who knows..maybe it’s a career change. lol Or maybe I’ll just settle for making it across the finish line at a really good speed for forever. Just sayin’
If you’re interested in doing these sorts of things check out ImAthlete and Spartan Race websites.
We are also running another one this weekend in the Bronx that’s sponsored by Merrell and are already lining up races for next year. Now…if only I could get my hands on a Spartan Race season pass for 2012 I would be as happy as a 5th ave. hooker on pay day. C’mon universe. Help me out on this will ya?
Here are some stills from the race….
27 Sep 2011
in Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Pelvic Floor Dysfunction
Tags: Endurance racing, IC, IC Awareness, IC awareness month, Lady Sparta, obstacle racing, Pelvic floor dysfunction, Sparta, spartan Race, super spartan, tali, tali keteri
Saturday September 24th 2011 was one of the most gratifying days of my life. After months of endurance training, mental coercion, and bladder preparation I finally stood at the Spartan Race claimed park grounds waiting anxiously for my heat to start. Meghan (my roommate) and I sported all the necessary tones of teal for an IC awareness geared run and told anyone who asked about our blue hair and clothing just why we chose that color. For those of you who know me you’re well aware that I document everything in excess and also that I love to ramble on about whatever I’m doing at the time because I convince myself that someone, somewhere, actually gives a shit about what I have to say. I don’t know if this is the case but running my life based on my own convincing nature seems to work for me.
So…now that we’re all totally clear on all of that. This video was recorded a few hours before our scheduled heat. Just an explanation about why I had to do this so that at the end of the day I could happily claim myself as Spartan Tough. I could also reclaim my inner lady Sparta as well. Guess I finally got to eat the pie. Reference my “Reclaiming My Inner Lady Sparta” blog for the further pie explanation.
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.
09 Aug 2011
in Chronic Pelvic Pain, IC, IC awareness month, Interstitial Cystitis, Interstitial Cystitis/IC
Tags: Bladder, Blue for IC, Chronic Pelvic Pain, CPP, Health, IC, IC Awareness, IC awareness month, IC-Network, Jill Osborne, MTV True Life, Painful bladder syndrome, PBS, tali, tali keteri
September is fast approaching.Which also means genuine annoyance caused by none other than yours truly is quickly approaching as well. What does this mean you ask? SEPTEMBER IS IC AWARENESS MONTH. And this, my friends , can only mean two things: My mouth will not be quiet and my fingers will not be still. So, with all of that being said…
This is my official warning….a disclaimer if you will. The next 6 weeks of your lives are going to be spammed with talk of bladder stuff and not just by me but by many other men and women who have douchebaggish hellions with no manners for bladders. It will be graphic. It will be gross. It will be more information about me than you all care to know. It will seem unnecessary to those of you who don’t believe this IC thing exists. If you are one of those people who does not believe this IC thing exists I will shun the non believer. Shuuuuunnnnnnn……. and I will shun you into regret about your being shunned. Then you will have no choice but to shun yourself for being so close minded and dumb to begin with.I’m just sayin… That also means that you should prepare for the most brutal, painful, extremely long winded, and seemingly never ending debate you’ve ever found yourself in up until this point in your life. That is..until you see my point of view. If this is a challenge you are willing to take on please send in your applications before September 1st. Actually September 2nd would be better. The first is my birthday and frankly I don’t want to spend it defending the fact that my useless bladder is for real. Also, If you plan on challenging me to the “IC does not exist” debate be ready to defend your opinion and your beliefs. I hate nothing more than mouth flappers who can’t back their shit when it comes down to facts and medical/scientific proof. You are entitled to your opinion but please oh please oh please, you non believers you, please have your ducks in a row before arguing with me about something that I would stake the entire world’s safety on because I know how real it is. My only head start for you is this. DO YOUR RESEARCH before stepping up to the plate. It’ll make your humiliation seem not so, shall we say….pathetic. Yes, I said it.
Now, for those of you who have IC or know someone who does, I am quite positive you understand the importance of this month. It gives us even more of a reason to tell everyone that will listen about why we are the way we are and why it affects our lives the way it does. It gives us a chance to explain. It gives us a reason to network. It gives us a chance to make a difference in our situation. It gives us more of a window of opportunity to fund raise. I’m not saying that a massive change is going to happen all at once but for those of you who have been active in the IC community for say the past 6-10 years I’m sure you can see the difference. It’s a snowball that’s rolling ever so slowly down the bunny slope at your nearest ski resort but, by God, it’s still rolling. Slow is better than not at all. At least it hasn’t melted.
People will not accept this condition if we do not tell them about it.
The outside community will not know it exists if we don’t tell them how many of us it truly exists for.
Doctors will not treat it as a real condition if we do not speak about it as a real condition.
Hiding our pain and frustration = allowing our pain and frustration to continue to be swept under the rug.
Spam the shit out of everything.
Hand out flyers. Hang posters. Hit up the local newspapers. Write a blog. Post badges. Start a fundraiser. Tweet away at all the other twits who don’t have a clue. Make fb pages…but be nice to each other about it please.
Because..truly…we CAN DO ANYTHING.
Only we get in the way of ourselves….well, we and our asshole-esque non- functional bladders. Time to put them bitches in check and control them for a change. September is our month kids. Have at it.
Now stop reading my shit and get busy!
Thanks Jill and the IC-Network for getting this up and running for yet another year….
***all pictures are borrowed from the official IC Awareness month website which is an IC-Network project!
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!