Easy dismissal = Pure ignorance & Thoughtless Notions.

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 an issue I just sit down and do so with no questions asked and absolutely no procrastinating. Unfortunately, this subject deserves pure thought, passion, and patience (and we all know that patience is not something that comes in abundance in the Taliverse). This 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. It is not an easy subject to handle but I plan to do so in a way that will give you no choice but to think about it from my point of view. I have always had a knack for making people see things my way, if only until the end of my ran,t 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 along with 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 are all 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 of them being real  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 from all who doubt. Matter of fact, I plan to hear from all the doubters, in excess,  but only after everyone opens their ears to me first.  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 brain tells you that the pain that so many of us feel in this world is so impossible. How could it be so inconceivable when there are so many other conditions out there 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. Mostly because I feel  it’s  important that there’s a thought process behind the non-belief. I don’t want to hear you don’t believe because you’ve heard someone you know who knows someone you know that has these conditions and that they’re not real or  because you’ve heard a doctor say that the pain can’t be explained therefore the pain does not exist. I want to know why YOU yourself do not believe in the possibility that these conditions destroy so many people and then…after you’ve done that, please continue to read on. If you choose to read on with an open mind,  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?With that being said…I shall start.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
and housing for other  important body mechanisms (ex.urethra, vulva)
 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….. even controversial conditions such as fibromyalgia and RLS  are widely accepted by the public as well. People are so ready to prance around, with their charlie horses and all, banking on 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. Actually, it seems not thought out at all.
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/jogging form sucks but you continue to run every day in the same way that you always have, you will forever be battling shin splints, stress fractures, and sore leg muscles. You will most likely smarten up at some point and attempt to fix your form and most likely you’ll expect those pesky symptoms to go away. Unfortunately, your legs have been trained to run the shittiest way possible for your entire existence and they got used to it.  This means that even though you’ve corrected the “shitt form” situation, 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 regardless of your early attempts to fix the problem 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, 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 you have to look at the 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….ain’t nobody got time for that)

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 human 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….if you’re having a hard time following me, I’m saying that the older generation didn’t have the internet….we, on the other hand, have all the information we could ever need right at our fingertips…on our couch or on our phone if we so wish.

Moving on.

Some people start out treating their rubber band well and some people are just now playing catch up and trying to make up years of “rubber band abuse” 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.
You have to  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.

Moving on…again.

Interstitial Cystitis is simply this….our bladders are hypersensitive to anything acidic. Actually, I can one up myself…our bladders are hypersensitive to EVERYTHING. This is primarily because the Glycosaminoglycans (GAG) 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….
  <—————–This is not a normal bladder…This is what many IC bladders look like. This shows 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.

Time to put our rubber band and bloody body organ ulcers together in a bag and shake them up.

Ready?   Go…

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 just  because you are running with the concept that 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.

 

Vulvodynia has no one specific cause. There are shit tons of speculations as to what can cause it but those speculations are 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?
Again, I scream, Why?
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:
Dyspareunia 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?
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**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.

I read lots & lots…& plan to tell you all just exactly how I feel about the words that enter my eyes, puncture my brain, & dance with my bladder shaped soul.

As many of you may know (or may not know), I have been involved in the Chronic Pelvic Pain community  for many years in many different ways . I spent the first year or so after I was diagnosed with the plethora of conditions I now wear on my sleeve at all times learning everything that I possibly could about these debilitating illnesses and any types of treatments that were out there. I bought every book that I could afford, took the best parts from all of them, and created my own theories and regiments that I felt fit my conditions in the most personalized manner. I have read some amazing CPP literature over the years and I have also read some CPP literature that makes my blood boil and my vagina, bladder, and pelvic floor start a revolt all at the same time. (It’s funny… the power of words) I have been saying that I’m going to babble on about the things that I’ve read, both good and bad, over the years..for years, but have just never gotten around to it. I fear the time has come for you all to hear what I think about the books I have read….I’m hoping most of it will be useful to you and will attempt to keep it as useful as useful can get but alas, I am highly opinionated (which most of you do in fact know)  and never apologize for my honesty. So… be prepared for some random shitstorms that may fly out of my mouth. Keep in mind that these words come from MY opinions and MY opinions only. My words are not a message from Jesus and should not be taken as such. I’m merely just going to  say how I feel and explain why I do or don’t like a particular jumble of words on a collection of pieces of paper. No one has to agree with me. As a matter of fact, no one even has to think that maybe they might agree with me with even a sliver of possible agreement, but I do welcome all of your opinions about my opinion as long as we all keep in mind that our opinions are in fact our own, to express however we desire and not to belittle those who don’t agree with said personal opinions.  Copy?

Ok, with all of that opinion babble out of the way I leave you all to anxiously await the upcoming uber special official “Tali Keteri CPP book dissection series”

Have a drink and watch a horror flick in the meantime.  Or if there is a CPP oriented book you think I need to get my hands on and form an obnoxious opinion about, send me some suggestions. Remember, I’ve read a lot of them so be creative.

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The Aftermath…

Needless to say, the past 9 days have been totally crazy…I’ve heard from so many people about so many topics that I don’t even know where exactly to start for this blog. But the negativity aspect seems like the best thing to make clear from the jump.

Soooo,  I will not focus on anything negative at all for the duration of this piece, nor will I answer or respond back to any negative or hateful emails, posts, or comments. I know that it gets you no where…except maybe upset, angry, betrayed, and in a major flare (all of which= no good and no where necessary) The truth is that at the end of the day people are going to have their opinions and regardless of whether they’re based on facts of assumptions those opinions are THEIR opinions and they have the right to hold on to them if that’s what helps them sleep at night…the only right they don’t have and I will say this loud and clear is to belittle, degrade, slander, and intentionally hurt those who may respect, but don’t agree with those opinions that just so happen to be THEIR opinions. I will respect anyone’s opinion no matter how much I disagree but I will never respect someone who irresponsibly tears those down who are supposed to be a part of your “community” because they don’t feel the same way they do. That is all that I will say about that.

For all my lovelies who haven’t heard me state this 4000 times in the past week or just didn’t want to listen I shall say it again just cuz I can and kinda want to….I was filmed for this episode for almost 4 months. There was no script, no telling how much time would be spent filmed while the crew was in the house or out following us around, and there was nothing that was guaranteed to make it onto the final cut or not. Think about how much goes on in 4 months of a chronic pain patients life and then  think about how much of that shit that goes on in 4 months can make it in a 13 minute episode. Seriously. We are much more complicated and time consuming than that. Sometimes it takes me 13 minutes to pee properly. You do the timeline. Hell, I’m even  surprised my name made it in.  lol. I’m just sayin’ . Clearly there was a lot that was left out. There were aspects of these conditions that were not touched upon and there were some portrayals of treatment and diagnosis that seemed only took a few minutes that really took years. The film crew just caught the end of it, not their fault. Blame father time for that I suppose.  Clearly my dilators didn’t help fix my pelvic floor dysfunction or my frequency problems caused by my PFD in those 13 minutes. Also, my IC ridden bladder was not taught how to act more appropriately and stop burning in those 13 minutes either. It took years….ya heard? YEARS. A ton of hard work, catheters, needles, withdrawals, acupuncture, NAET treatment, meditation, energy healing, internal physical therapy and a POSITIVE attitude to get to where I am now.  I am not cured… but know that my symptoms and conditions are managed, controlled, and taught how to relax even in the worst pain so that it doesn’t get worse and worse and worse. Cured doesn’t exist yet but . But it WILL. The fact that cured’s existence isn’t present yet is unfortunate, but that is what i’m working for…that is what we are working for. That is my only purpose with this….to get everyone to a pain free state whether it’s officially cured or not. Cured is just a word…with a definition that someone , somewhere, at some point in time, thousands of years ago, gave it. Nothing more. What we need is hope…and a positive energetic path that shows each person the steps to take to get to their own personal “cure” their own personal wellness…their own personal route to conquer the pain. Don’t let the statement “no cure yet” control you. You control you..

Let me tell you what I am. I am not letting my conditions control me in any way shape or form…I am that person  that questions every treatment…every single thing a doctor tells me, and I am that crazy kid that has been studying these conditions like a mad scientist from the second I was diagnosed. If I wasn’t this old I’d go back to school to be a CPP specialist and help chronic pelvic pain people like Dr. E and Isa do. Unfortunately, IC and friends helped me waste a lot of that time that led up to me being this old. Ouch time. Wish I could rewind you sometimes. I am someone that believes that in order to get a cure you have to raise awareness by any means. I am an IC patient and have been for years…even if my symptoms are not as severe as they used to be it still fuckin burns when I pee.  I am a vulvodynia patient…and have been for years…even though at this point I can wear jeans most of the time , Lidocaine ointment is still my vagina’s best friend. I am a Pelvic floor dysfunction patient…and have been my entire life. If you’re not aware…it’s almost unheard of (in my opinion) with the proper diagnosis to have IC, Vulvodynia, etc. and not have pelvic floor dysfunction. It’s all connected… seriously. check out a pelvic anatomy  diagram. I am not someone that is giving up this awareness fight whether people like it or not. I am a gypsy and just want to go where my heart leads me. I used to be a singer…back in the day 3 shows a week here in the city…and then my bladder wouldn’t let me make it through a live set. I sing live maybe once a year if i’m lucky. My passion now lies elsewhere.  I am a loving, caring, person who truly wants the best for everyone unless you try to steal my cheese and then personally I don’t care what happens to you. lol

Kids, I’m truly sorry that IC wasn’t mentioned on the show I spoke about many important things in those 4 months that didn’t make it on. I had no control..i mean sure, I guess I could’ve kidnapped the editors and demanded that they listen to me and immediately make their show called “i can’t have sex” into a show called “my bladder is an asshole” but alas I would’ve gotten arrested and then there would’ve been no awareness for any of our other chronic pelvic pain people that need as much help as we do. We cannot be so selfish. Our time will come. I also thought that this was a great opportunity to at least…at least… get the words IC out there on national tv and was stunned when it wasn’t even listed as one of my main conditions.  But, what can we do about it now? Nothing. It’s already filmed, edited, and re running….now we just gather an army and make them listen so that they can finally say IC.  So  ,Yes, it’s upsettting but if I sit here and dwell on what could’ve or should’ve been then the awareness stops and i’m not ok with that…are you?

If it were up to me IC people would  have their  own reality show that could truly encompass everything the IC patient goes through on a daily basis. If it were up to me i’d go around the world talking to IC and CPP patients about their struggles..and I plan to. I have projects in the works that will hopefully help make a  turn a “taboo” shunned public topic into a “non taboo” public presence for these conditions. That is my promise and as long as my health can permit it’s what i’ll do. With that being said…the past few weeks have really taken a toll on my bladder and PFD. I’ve been flaring every day and totally let the stress kick my ass until this past weekend where I learned how to meditate properly and trust that we control our destiny in this world and as long as we stay positive we can do so much with ourselves…for ourselves…and by trusting in ourselves we can do so much for others.

I want to send a personal thank you to the other two girls in the show. Tamra and Tess…you were both so brave in sharing your stories as well and I wish you pain free days and better times. Thank you for helping to join the fight and make people realize that this exists. Stay strong. One day I hope to meet you both!  Thank you to everyone who has shown amazing support. I truly appreciate your motivation! For my family and friends who cringed at some of the stuff on that show….keep in mind that it helped me get some of ME back and it is helping so many others find their way back to the real THEM  as well…

REMEMBER…SMILE, BE THANKFUL, LAUGH, LOVE, DON’T LOSE FAITH.  IF YOU HAVE A MOMENT OF LESS PAIN, DO SOMETHING YOU LOVE. DON’T EVER FORGET THAT YOU ARE STILL A WOMAN…AND YOU ARE STILL A MAN…YOUR PAIN IS JUST A DARK PASSENGER THAT NEEDS TO WEAR IT’S DAMN SEATBELT AND TAKE SOME F’IN RITALIN.

What an experience.