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.
06 Feb 2012
in Chronic Pelvic Pain, Interstitial Cystitis, relationships, Therapy
Tags: Chronic pain, happy, ic ramblings, Interstitial Cystitis, meg dolla, new, smile, tali, tali keteri, taliverse, universe
Easier said than done I always say. I mean don’t get it twisted..I. do. smile. And it is easy to smile or at least sorta easy to smile. It’s just not easy to always mean it and it’s even harder to find something to smile about when shit always goes wrong. People will sit here and blah blah blah me about how I should try to find the joy in life and think positively but unfortunately all of that just never worked for me in the aspect of dealing with said life. In a chronic pain aspect it helped me tons. Positive thinking also helps with reinforcing positive energy and frequencies that surround your being but it never really helped me to smile during a total shitshow. Cracking jokes about my own misfortune is about the only thing that holds steady in the “make T smile a real smile” category. That and music…. and Meghan..she’s gotten pretty good at dragging a genuine smile out of me (with a meat hook if she has to) in the worst of times. I guess what I’m getting at is that it is totally possible to get a smile out of me but only a few people and situations can get a real one when the Taliverse is about to self implode. That’s just how it goes.
I don’t ever expect amazing things to happen..that way when amazing things don’t happen and shit ends up real bad or just mediocre I am not nearly as disappointed. I can honestly say that every time I do get a glimmer of hope about something, whatever it is manages to destroy itself or disappear before the next time I can blink my eyes and make another bathroom run. It sucks…lots…and I learned a long time ago that I’d much rather just expect the worst and be surprised if it doesn’t end up as bad as I first thought it would than expect too much and be severely traumatized when it ended up being shit. Call me a pessimist…that’s fine. But in all honesty I really don’t think that I would go about changing any of it. The only thing that I would consider changing is how I should be putting myself in better situations and surrounding myself with better people where this smiling thing would better come into play. I’ve tried to master this concept but unfortunately at the end of it all I end up caring entirely too much, letting my emotions play into everything, and putting humans on the superhero pedastal. When you put too many expectations on other humans and they fail miserably you end up “hating” them…and everyone else..and then you only smile when you make the jokes or when someone in your circle actually acts like a human with a heart and drags one out of you. Or when the shitshows subside for just long enough for someone you never expect to sneak in and change everything about everything I just said. Hey…it can happen.
So, onto the point of this lil’ smile-esque rant of mine.
I’m smiling….like really truly smiling. Not forced…or fake or any shit like that but for the first time in a hell of a long time I’m genuinely smiling.
Like almost ridiculous amounts of alot.
My face isn’t used to it.
Either is my brain….apparently. I keep getting headaches and getting confused about those constant laughter sounds coming out of mouth.
Everyone else who knows me is confused too…and personally I think they think I’m hitting the laughing gas when no one is around.
It’s funny because I love, love , love, love to laugh like this and it’s funny because I’m trying to get accustomed to the fact that my face is supposed to light up when I smile this much and that I actually look kinda pretty when it does. I guess I got really good at looking pretty without that genuinely happy glow… after all anyone can turn a scowl that meant for the universe into a sexy sorta “i’m badass” sorta pretty. I mastered that one years ago.
It’s been going like this for a week….(6 months if you go by our timeline because we like to skip 23409285209. 789 minus 4 times 2 and a quarter steps) but a week. I’ve been smiling like this for a freakin’ week. Is everything all sugar plums, fairy dust, and green bay packers green n yellow? No. Of course not…but regardless of the shitshows going on all around us….I’m still smiling. I’m not instantly cursing at the universe and her lil’ games because I’m too f’in happy that she gave me a break enough to find someone who makes me feel this way again. I can’t guarantee that if she wants to throw a whole fucktons of shit at me for the next 5 months without a break in between that I won’t scowl at her in the process…but I can say that at least I’ll have someone who can make my face do that funny smiley thing in between plotting her demise.
I guess at the end of the day that’s all anyone can ask for….
I didn’t even have the balls to ask to be just happy…I just hoped.
Thanks universe for not giving me shit for the first time in 2 years. My gratitude for that is unsurpassed….
and for that…I smile right in your face…bitch.
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
02 Jan 2012
Tags: conquering fear, doubt, Fear, icramblings, ramblings of an ic patient, tali, tali keteri
This quote fits this exact moment in my life perfectly.
I’m learning to cast these doubts aside and control my fears….you should to.
01 Jan 2012
Tags: 2011, New Year, new years, new years eve 2011, tali, tali keteri, taliketeri, taliverse
Firstly, I would like to thank you for allowing me to survive yet another one of your kind. Sometimes other members of your family make it pretty freakin’ difficult to climb that mountain all the way up to ”peak 365″ before sending us careening carefree down the side with the hill so we can attempt to get a 5 minute breather.
Secondly, we need to have a discussion. A serious one. Neither of us are going to enjoy it but we need to clear the air before we never see each other again. I know you’ve already mentally checked out considering you only have 11.5 hours left and can already picture yourself laying naked on a beach with your mai thai and bong in hand but you’ve gotta do me a solid here and at least listen…even if just for a moment… Cuz honestly kid, I don’t think I can deal with your older sister who arrives by teleportation at midnight if I don’t get some closure from our fucked up relationship. Ya dig? You at least owe me that much. I can assure you that if you cooperate I won’t ever try to contact you, look you up, fb stalk you, tweet at your face, skype your mom, g+huddle the twins, or send a smoke signal by way of an Ent. I’ll simply just leave you alone to live in a memory and we can all get on with our lives. Sound like a plan? Good. I’m glad we finally agreed on something …it only took 364 cycles.
So. ..Here goes nothin’…it’s a lot but it’s important….just try to keep an open mind mm k?
In the beginning we had made a pretty sexy agreement. I was going to work on the positive vibes surrounding my being which in turn would scrap some of the negative bullshit that constantly surrounds the Taliverse and you were going to do your best to not fuck with me every chance you got. It coulda been majestic…but I learned early that you weren’t too good at holding up your end of the bargain when it came to the obscene number of shitshows that you were supposed to help me prevent. Personally, you blew at this game but I didn’t hold it against you. I knew you were still learning and I was more than willing to let you rock out, make mistakes, and teach yourself some shit along the way even if it was at my expense. No hard feelings there at all. I got it…and tried to understand that no matter what unorthodox manner you used to get to where we needed to go…you knew where we needed to end up. I tried to understand this until I no longer understood what I was supposed to understand to begin with..and then it all went to shit…
I know It’s always easier to focus on the negative so I’m going to happily talk about the good things you’ve done for me during your alotted time here before I delve into the plethora of uneducated madness that encompassed the rest of your reign of terror.
You gave me a new roommate and somehow managed to make him just fall right into our laps when we needed a replacement most. Then you gave us another one and the Whitehouse was full once again. It filled a void that desperately needed to be filled.
My bladder also behaved for the most part….most of the time. Mostly.
You gave me boatloads of extra confidence, willpower, strength that I didn’t know I had, my first trip to Ireland, and amazing people from all over the world I can now call my friends and family.
Ya let me make it through the Spartan Race without any major injuries and without my bladder falling out of my vag. That was much appreciated…trust me…I needed something athletic in my life and lord knows I can NEVER turn down a challenge.
I finally got back into the animal care field after all the years of ex bosses and exes doing their best to keep me out of it and managed to keep this job for the rest of your cycle even though all of the shitshows I will speak about later did their best to take me out.
You helped me get back into music for the first time in 5 years….that’s pretty f’in monumental. At least I can say that I wrote enough songs for my solo album during your time. Thanks for that…for real. Here I thought I had thrown in the music towel for good.
You kept the real people who loved me by my side and forced me to let go of the ones that never really gave a shit anyway…I thank you for that now with full understanding of why they had to be ripped from my life.. it’ll never change how many times they cross my mind on a daily basis and how sometimes I forget that it all fell apart as I’m picking up the phone to call them and complain about something petty like I used to do prior to the taliverse apocalypse before I have to hit the “it’s too far gone” wall again and make myself forget they exist once again.
You also let the same kind people protect and care for me when some familiar inner circle asshat roofied my drink and damn near killed me. Thank god nothing else happened..that we know of. Thank god the good ones were there…Thank you for not letting it be worse than it was. You get a gold star for the protection but negative 67 for adding that roofie shitshow to the long list of other ones you were about to throw my way.
You finally gave me the courage to allow a relationship with a man/business partner/ and best friend that has been up my balls for a chance for 10 years. You enabled me to break down my wall…something I said I would never ever ever ever do again and let it happen. I did it…It was perfect…and happy…and productive….until it was counterproductive…and hell…and downright cruel. You then gave me the courage to watch him walk away and turn into someone I never really knew at all and to watch him walk back…and then you gave me the faith in myself to let me walk away. And to build that wall right back up so that no one can ever get back in again. Legend. Epic Legend and Epic f’in fail because with that went the only person I was ever meant to do music with. Ha ha. Good one. Ya greedy freakin number.
You kicked my ass til I was on the ground…and repeated to do so until I was so drained mentally, physically, an emotionally that for the first time in my life I was concerned for my mental stability. You showed us more death this year than should be allowed…more loss than can be accounted for…more debt that can never be repaid unless you somehow shove a winning lottery ticket down my throat and you kept piling more on the plate like you were never concerned that the plate could very well crack. You were so greedy that when the plate did crack you still piled more shit on there and watched it seep through the crack and onto the white carpet and then had the balls to tell me that I ruined the carpet. Ya jerk.
You taught me (reminded me) again (because lord knows your other fam members have taught me this over the cycles as well) that just because someone is comfortable…it doesn’t mean that they will ever treat you how you deserve to be treated and it sure as shit doesn’t mean that they’re ever going to stop loving you either so you can’t bank on loss of feelings as a cop out. It just means that comfortable is comfortable and that usually means ain’t shit gon’ change which also means it ain’t gon work. Chalk it up to another person lost because they couldn’t see the flaws in themselves and be a good enough person to accept it and deal with it. Struggle. Ultimate struggle.
The people that always said they would be there when something like this happened were no where to be found and the people that were around weren’t there to be my shoulder to lean on but to lean on mine because of their own shitshows. I was tired. My brain was tired. Life was tired and you took away all my freakin’ Rockstar and replaced it with decaf coffee because you’re a douchecanoe. You actually took more away from me during your reign of terror than most people have taken away from them in 20 and you cackled loudly from afar at my misfortune. You truly are an evil bastard.
But…with all that being said. I applaud you. I always say that if you’re going to do something do it fully. Don’t half ass it. That concept holds true in your case more than ever. I thank you for putting your full effort into making my life a complete shitshow during the last 365. Thanks for breaking me almost to the point of completely shattered and rebreaking me everytime I superglued my life back together. Ya did well. You left no stone unturned and you did your damn best to push me close to the doors of Bellevue but alas, the Taliverse prevailed. In case you didn’t get the memo from your previous family members that attempted the same takedown….THE TALIVERSE ALWAYS PREVAILS…YOU MORON. Check your mail next time. It may help you.
So 2011, thanks for listening. Thanks for packing your bags and vacating the premises in a semi peaceful manner. Thanks for creating the Talimonster and thanks for getting your sister 12 here right on time to take over. God, I hope she has a bigger number heart than you do. Farewell asshat. You will not be missed but you will always be remembered.
16 Nov 2011
in relationships, Therapy
Tags: Poetry, Spoken word, spoken work, tali, tali keteri
A red-eyed flame leaps through the hoop of a child’s love lost.
A bitter reminder of innocence gone and a jaded afterglow of a good memories’ remains.
A metaphorical garbage heap of bits and pieces and slivers and shards and a vast canvas of nothingness that exudes failure and screams “IT’S OVER” into the blinding darkness that never seems to end.
I can see my diminished dreams flailing wildly as they grasp for the reaching hand of existence.
Something to pull them back up from the swirling tides of loss.
Something to give them an ounce of meaning in an era of indifference.
Something that means not all is lost.
An ocean of salty tears pulls at the strings of a heart once strong all the while, diluting the sorrow with saline and the steady motion of a peaceful and innocent womb.
The right aural cavity hears The waves whisper sweet nothings of keep ya head UP’S and don’t worry ma you got this. As the left reminds the right that all words of fail sound the same when masked with the constant flow of a wombful existence.
An existence that age does its best to alienate in fear of having to process the inevitable that time does in fact run out.
No. life says to me. NO. You don’t run this show.
A fate already decided mans these controls and your finger is not on the red button.
a hopeful lapse in space and time shall co-exist with the continuum of an ever buried hopeless goal never wanting to break free from its chains and dirt that hold it in its place.
This place is not meant to be held and plural chains can always be broken while dirt transforms itself to mud. A wet slop that ever so slowly drains itself down a hidden side of a mountain capable of handling a messy situation such as this.
A situation comprised of wet pebbles that roll away one by one finally exposing a polished pearl forever calling a specific name.
a diamond in the rough with a rough outer sheath to protect it from the harshness of the journey.
As a lost soul stops to pick up this gem that stayed hidden for far too long a realization of pride less evolvement takes the wheel and as small a trinket as this rock seems it’s still too heavy to pick up on ones own.
an immediate jest from the universe that seems to scream…”yes bitch you can see it now but even the smallest shit can be a burden. Find help. Find love….Trust something other than yourself and maybe just maybe that pearl will walk its ass right into a life deserving instead of life always havin’ to play search and fetch with it” ..only in love with the idea of a real thing.
Maybe just maybe this pearl is a polished form of fail.
A polished form of me.
A polished form of a soul forever looking for its true place in this world.
A place that only a failed pearl can be so lucky to accomplish and call its own.
A fail that only a failure can recognize..
And a recognition that even a failure can get up and fail again.
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….