Tali Keteri’s Personal Writing & Critical Thinking Project for IC Awareness Month 2014

Last year I implemented a new kind of writing project that spanned the entire month of September as a way to help fellow ICers become more comfortable with talking about the many different emotions having a condition like IC can make us feel. I received such amazing feedback from those who chose to be involved and continued to hear from so many people who wanted to have another writing project in place for this year that I had to start planning a new form of exercise to keep us busy in 2014. After all, I could never willingly or intentionally let my fellow IC writers down! But, as much as I loved the daily thought topic project, I didn’t want to do the same thing all over again and fall into a routine and if I’m speaking honestly, as I usually do, there was also the fact that I didn’t have the benefit of feeling reliably healthy enough to be confident that I could make a writing topic post every day. I actually wasn’t even positive that I would be able to manage this at all. But, I have since started feeling just a bit more human and decided that better late than never is a really great way of thinking. So, that being said, I present my writing project for IC Awareness Month 2014.

Since I dropped the ball missed the first 2 weeks, I have decided to combine the prompts from Days 1 through 15 in one post and will then continue to post daily thought prompts for Days 15 through 30. If you want to go back and work on any of the prompts from the first 2 weeks please do and don’t hesitate to post your responses. If you’d rather just pick up from here on out, that’s perfectly ok too. It’s whatever you feel comfortable with and however much you want to put in. There is no wrong way to write in this situation. Do as many or as few as you’d like and share them with as many or as few of us as you see fit. The good thing about daily thought prompts is that they can be tailored to suit a vast group of people!

The following questions should help explain the project and clear up any confusion, should there be any. If you have any additional concerns feel free to contact me directly or through the comment section of this post and I’ll be more than happy to address them!


Good To Know’s

Last year you asked questions or gave us prompts, this year just looks like random words, videos, quotes, and pictures. What are we supposed to do with them?

Every day throughout the month of September will have a word, picture, video, or quote. I want you to tell me what that particular prompt means to you. Does it make you think of how things used to be before you were diagnosed? Maybe it gives you hope to face the future. Does a particular picture inspire you to reach out to others who are struggling with IC and other chronic pain conditions or does it make you feel angry? Did that quote just so happen to sum up your feelings since you rolled out of bed this morning? Maybe a particular day’s topic won’t make you feel anything and if that is the case, no big deal! I’m asking you to respond to the topics that spark a reaction knowing that every person’s answer is going to be different just as every answer is going to be special.

Where will these daily thought prompts be?

Days 1-15 will be in one post which I will include at the end of this question segment. The posts for Days 15-30 will be posted daily as an update to this post and on the IC-Network official fb page.  You can pick and choose which ones you’d like to take part in. You can choose to do them all, only a few, or none. The choice is yours!

Where should we post our responses

You can post them as comments on this blog or on the actual posts on the IC Network FB page.

What if we don’t want to put our names on our answers?

If you’d like to submit anonymous responses to be posted publicly you can email me directly at livingwithic@hotmail.com and I will make sure to post them for others to read with no names attached.

What is the point of this?

This will give us an opportunity to really look inside ourselves and express different emotions that may stay buried until something stirs the pot. By opening up about our struggles and strengths with this conditions, we offer honesty, support, and awareness, both to ourselves, fellow ICers and the outside world.

What if I don’t agree with one of the topics/prompts/ideas?

Then don’t do that one! I try to make the prompts as diverse as possible so that everyone can find numerous topics that appeal to them. If there is one that you don’t mesh well with, don’t judge those who do. Not everyone is the same and we have to respect that! In other words, be nice. I don’t play well with those who don’t play well with others who are going through the same struggle! Fair warning!!!

Fair enough.  Can we get started?

Without a doubt. Ready go…Don’t forget to dig deep. Talking about our feelings with those that understand really is a healing experience. The more you put in the more everyone can take away.


Daily Thought Prompt’s for September 2014 

September 1st-   Determination

September 2nd-  Old-tree

September 3rd-  “The universe is big. It’s vast and complicated and ridiculous. And sometimes, very rarely, impossible things just happen and we call them miracles”    The Doctor, Season 5, Episode 12

September 4th-  Isolation

September 5th-  fall-7-stand-up-8-bravery-picture-quote

September 6th-  

September 7th- Dismissal

September 8th-  We_Can_Do_It!

September 9th- 

September 10th- Better to fight for something than to live for nothing. –George S Patton

September 11th-  street-art-by-pejac-15

–This amazing painting is  by Pejac, a well knownstreet artist

September 12th-  Reminisce

September 13th-  I Will What I Want  <—click the link!

September 14th-  dr-who-quotes

September 15th-  Whether you think you can, or think you can’t. You’re right – Henry Ford

September 16th- 

September 17th-

Cold is the water
It freezes your already cold mind
Already cold, cold mind
And death is at your doorstep
And it will steal your innocence
But it will not steal your substance

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand

And you are the mother
The mother of your baby child
The one to whom you gave life
And you have your choices
And these are what make man great
His ladder to the stars

But you are not alone in this
And you are not alone in this
As brothers we will stand and we’ll hold your hand
Hold your hand

And I will tell the night
Whisper, “Lose your sight”
But I can’t move the mountains for you

Lyrics to “Timshel” by Mumford & Sons

September 18th –  enhanced-buzz-10217-1397079009-4

Clearly these are empty because we’re not there yet! Check back daily for the new topic!

September 19th-  

September 20th- 102661331_Munch_265471c

September 21st- “Everyone has disabilities. Mine are just more visible”  – Jim Abbott

September 22nd-

September 23rd-

September 24th-

September 25th-

September 26th-

September 27th-

September 28th-

September 29th-

September 30th-

Tali Keteri’s 2014 Interstitial Cystitis Awareness Month Social Media Meme Contest

   Tali Keteri’s Social Media Meme Contest

-Supported by the IC-Network and the official IC Awareness Month campaign

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The above meme was created by yours truly!

      Last year I had the privilege of running and contributing to the writing, poetry, and blogging portion of IC awareness month for the IC- Network. This year, I decided that since the majority of time in September of 2013 was spent helping fellow ICers become more comfortable when writing or talking about the intricacies and personal sensitive nature of this condition, we should use our new found confidence to tell our stories to those who have no idea what IC is or what it entails. We need to spend our time creating awareness tactics that interest those people who would normally have no interest at all in something that doesn’t directly affect them. What better way to do so than to use a form of media that most can understand? I have spent a ton of time researching and monitoring what forms of social media go viral the most and have spent even more time developing different concepts for ICers to use during our awareness month to help get the word out. It is undeniable that memes have become commonplace in our social media outlets and that because they are easily shared, it is extremely beneficial to those in our position to use our own personal messages to create IC related memes that may prompt the outside world to put their best ear forward. (That sounded weird right? “Best ear forward”? I mean, I guess I feel that ears are like boobs. One boob is always bigger than the other (don’t be offended, it’s just nature)and I feel that one ear usually hears better than the other, if only in our mind… What? Our bodies are complex vessels. And clearly, I think too much… Anywho, I am excited to put this meme challenge on the table for those who want to use their wit, humor, bitterness, anger, and annoyance with this condition to have a little fun while trying to get the “outsiders” involved. I can’t wait to see what we all come up with.

Now on another note, I would love to make a contest out of this and offer up some prizes to the best IC awareness memes of 2014. I’m still working out the logistics of this but I would love to crown the memes that are the most :

publicly influential, witty, positive, bold & personal!!!

So, get creative.

Get ridiculous.

Make a statement.

Don’t be afraid to use shock value.

     But, just remember, the point is to be able to make these go viral. We want people to be able to share them over and over, either because they can relate or because they think our struggle is funny…or maybe because they don’t believe us…or maybe because they do and they had no idea that something like this existed but the funny cartoon in the meme made them need to read it and in turn prompted them to need to Google IC and its symptoms. It’s all about the buzz that we have the power to create. So remember, regardless of why or how they choose to share it, a share is a share is a share, and not everyone is going to understand this condition right off the bat. It will take time. But in order to explain how IC works, we need an audience willing to listen. We need to focus on one thing at a time.

Let’s create an IC interest..

We can teach them about it as we go.

Make it catchy

Make it real

Make it raw

Make it YOU

     IC may have changed a lot of things about all of us, but we are still who we were before the pain started. It’s up to us to keep that part afloat.

Meme-esque frequently asked questions and concerns

What exactly is a meme?

A meme is:

noun

  1. A cultural item that is transmitted by repetition and replication in a matter analogous to the biological transmission of genes
  2. A cultural item in the form of an image, video, phrase, etc, that is spread via the internet and often altered in a creative or humorous way.

Great, but what IS it?

     Here are some examples of popular memes you may have seen floating around the vast

webo-wildwest-ophere…I mean internet. (Don’t judge me. I have a bad habit of renaming things..mainly for my own amusement)

chuck norris

fries

 

Ok, but how can we make this “meme” situation a useful resource of Interstitial Cystitis Awareness Month?

     Well, we can do this by simply tailoring the “tag lines” on these images, videos, gif’s. Etc., to fit our needs. As I have stated numerous times before, this age of social media requires us to think about awareness a bit differently in the sense that we have to change our approach to appeal to the masses. That being said, people love to share things on social media that make them laugh or even things that make them feel somewhat awkward. We have such a great opportunity to make them awkwardly laugh or even shock them so badly that they have to share with others because they can’t believe what they’re reading. I’m not trying to desensitize our issues, I’m simply saying that we need to use social media to our advantage and in order to do that we need to grab the attention of people who know nothing about our struggles. The best way to do that is to put it all out there. If they laugh at it, who cares? At least they read it and maybe shared it. That’s a few more people Googling IC or IC awareness month than there were 4 minutes ago. That is the goal. This is not the time for sensitivity!

Say we do want to take part in this challenge, how do we even start?

      Because memes have become such a staple in the internet world it is very easy to design your own. But, if you’re new to the whole concept of making “the meme” here is the best website ( in my opinion) where you can try your hand and make some really effective sharable memes.

  • www.someecards.com – I think this is where the majority of people make their memes. They have a great variety of old school, cartoony, and vintage images to choose from. All you need to do is pick a picture that suits you and add the words..oh, and share with everyone. All the time.
  • There’s also Rotten E cards if you’d like to try another site
  • Here’s an IC meme I found while searching on the site- I’m unsure of who made it originally but thanks a ton for such a great way to use humor and wit to expose the outside world to our pain.    i know you don't know meme

What the hell do we put on these things?

     Our stories.

     Our feelings.

     In as few effective words as possible.

     Example: you’re having a bad day because you dropped your coffee?I got up 26 times in the past 4 hours      to try to pee and still look 6 months pregnant from the bloat

     Your night was bad last night? Did you have to get up 26 times to try to pee? I thought not.

Do we have to put our names on them?

     No, of course not. Every year I only ask people to divulge as much as they feel comfortable. If you want it      to be anonymous but still want to be in the running for the contest you can email me directly at           livingwithic@hotmail.com so that we will be able to keep your post anonymous but keep you updated and      involved in the running for the winning memes.

How many IC related memes can we submit?

     As many as you’d like. The more options we have, the more shares we get, and the more shares we get,      the more awareness occurs. Feel free to expand and post as many as you’d like. Also, feel free to post          where ever you’d like.

Such as?

     Your own personal Facebook, IC related facebook groups, Twitter, pinterest, IC-network , IC Ramblings,        news stations, etc. If you think you can post somewhere where people will willingly pick it up, post it. And      then post it again. This is the month we’re allowed to be annoying and obnoxious. It’s all about us. I mean      really? What’s the worst that can happen? They’ll say they’re not interested? That’s a better chance then      taking none at all. Keep talking.

Fashionably Late: I needed 14 bathroom breaks. Here’s to September. IC Awareness Month. 15 days late.

7117816429_3200e417f3Ok. I know that I ranted a shit-ton about all of the projects I had planned for this years IC Awareness Month and never posted much of anything about anything. This is truly bothersome as I never, ever, EVER slack in September…especially when it comes to this even  But unfortunately, this year had some medical surprises in mind for me ( Not IC related- not even a little, believe it or not) that I couldn’t have predicted which knocked me off of my game completely. I have been less than useless for the past month and a half which has inevitably screwed up my time management. It  has been quite unfortunate. I feel as thought I’ve let many of you down and for that I apologize. For those who are wondering what is going on with me I promise I will touch base on all of the details later on in the month but I want to take the time to focus  (while I’m physically able) on the importance of spreading the word about IC and the hardships this condition causes during this very important month that is directly dedicated to all of us who suffer with these particular pelvic and bladder issues.

That being said, the next few days I will try to make up for my severe ball dropping as far as IC Awareness month goes and I ask that you all try to be as understanding as you can.

After all, we’ve all been there right? Sometimes you just don’t feel well enough to get out of bed, let alone write, think, be creative, or act human. Be nice. I’m sure you’d want the same for you if the situations were reversed.

The next few posts will consist of the projects I had wanted to implement for September 1st and ultimately the projects that I was unable to get off the ground due to feeling so terrible. Yes they’re late. Yes it’s already September 15th. Yes they’re STILL important. Take part if you will, stand back if you won’t. But don’t hate on those who play or use their inner emotions to express all the words they feel they need to say.

This is our month.

Let’s make it count.

Check back for new posts and challenges daily from here on out!

If you want to get involved in other ways please don’t hesitate for one minuscule second to visit the official site of  IC awareness month and also the organization which I have able to contribute to for the past 5+ years with heartfelt support and understanding.

Even though we struggle. The IC community is strong. And that is truly something to hold dear.

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Interstitial Cystitis Awareness Month 2014- Plans to help expand our efforts worldwideto

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As many of you are aware, September is our official month of awareness for Interstitial Cystitis. Every year thousands of IC patients and their loved ones get involved to help spread the word about how this debilitating and difficult to manage condition affects our health and in turn, completely changes our lives. 

Last year my projects focused on making IC’ers comfortable enough with the details of this condition to speak publicly about how they envision themselves, their pain, and how others see them. It was a way for those having a hard time opening up to the outside world to express themselves in a personal way without it seeming quite so invasive. This year I’d like to focus on using our new found confidence with the intricacies of IC as the main driving force to help us get out there and make the public aware. 

  • We need public awareness. 
  • We need acceptance
  • We need to be taken seriously
  • We need medical professionals to look at the scientific and physiological proof of this condition and not treat us based on their personal opinion or medicinal ignorance.
  • We must be comfortable in speaking about the hardships that IC causes in a public setting if we want the public to listen because if we want the public to listen we must talk about IC on an angle that the public is willing to listen to. 

What I’ve found throughout years of being involved in this awareness movement is that we go about trying to get the general public’s attention all wrong. Usually you can’t just walk up to someone on the street and say “hey nice boobs- I mean shoes, let me tell you about a bladder condition that millions of people have that causes debilitating pain”. You can most certainly try this approach but the truth is, most people don’t care. Harsh?  Yes.  But it’s true. You have to talk to the non-ICers about it in a way they can relate; in a way they can understand.  They’re never going to truly pay attention and retain our information unless we make it interesting for them; or at least make it funny or strange enough for them to want to really listen. Only then will we have the IC buzz in the general population. 

For instance:

  • Many women can relate to the pain of a UTI because they’ve either had one themselves or know someone close to them who has. By explaining to them that our personal daily urination routines are as painful and uncomfortable as they would be when the bladder is infected, they may be able to get a glimpse into our urinary world. 
  • Painful sex (even if considered taboo-even though I don’t know how it could still be in the year 2014) is a very easy subject for the general public to relate to as well. Most “normal” people couldn’t fathom sex being painful. Therefore, it IS important for us to talk about this aspect of it to those who will listen.
  • People love to laugh, and while I realize that IC is not a joking matter, it is sometimes beneficial to lighten up a bit and poke fun at the situation. I am in no way saying that we should make fun of each other but I know from experience that when you try to explain the inner workings of this condition in its completely serious nature, people tend to turn off. Not everyone is capable of listening to medical details or the dark depressing side of an incurable condition. In a perfect world, everyone would be able to process the IC information the same way as the next person but unfortunately everyone has different interests. It’s up to us to adapt our delivery in order to reach the seemingly unreachable audience. Some of you may not feel comfortable with this approach and that is totally fine. Some of you, like me, can talk about every intimate and sensitize detail about life with IC to anyone or anything that will listen and that is totally fine as well

 All I ask, is for the understanding that, this year, all bets are off. I am prepared to try anything to expand our awareness efforts. 

So, let’s focus on that. Let’s focus on expanding our awareness efforts to everyone. Doctors, friends, neighbors, family, ourselves…why not the entire world? We could be totally unstoppable if we put our minds to it.

Who’s with me?!  

Please check out the IC-networks IC Awareness month page to get a better idea of how you can get involved.

There are already a few great IC Awareness month projects underway:

  • Pennies for IC patients is a fundraiser run by Lisa Herman that started on July 1st. All proceeds will be donated to two facilities specifically for IC related research.
  • A few years back, I started the Go Blue For IC campaign which included me convincing anyone who would listen to dye their hair blue/turquoise for the month of September as a way to show their support. It has since evolved, and even though some people aren’t comfortable putting dye in their hair, many go out and buy blue hair extensions, wigs, and hats. Alternatively, those who aren’t keen on touching their hair at all are also welcome to do their nails in an IC theme which is another IC patient project/contest that was started last year. 

And some projects that will be starting shortly which I will post about as soon as I have the go ahead to share! For those who are wondering, I will be running another writing/self expression IC project this year and should have that up and running by September 1st. I also have some other things up my sleeves and will tell you all about them before too long! 

Feel free to start your own projects. Individuality is always welcome here and if you have any questions, comments, or concerns feel free to get in touch and I’ll be happy to point you in the right direction!  

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If you’re having a hard time explaining, in human terms, the debilitating effects and inner workings of IC and other Pelvic Pain conditions to your loved ones, take a look at this and see if it’s worth a share. I tried my best to lay it all out there in a way that even the least interested audience may pay attention to and hope that it serves you well on the awareness front! 

I can’t wait to work with all of you throughout the next 2 months and look forward to taking part in your awareness projects! 

Dr. Drew’s Apology to the Endometriosis & IC communities

If you’re looking at this title and wondering what exactly Dr. Drew and his Loveline sidekick apologized for, I must tell you that you missed all of the excitement from earlier in the week. Please take a moment to backtrack and read all about it here so that we’re all on the same page.

All caught up?

Ok.

Now take some deep breaths and shake it out…maybe throw a pillow or some other SOFT object at the cat, or the husband, or eat an entire chocolate bar in one bite. Jump up and down or have a proper adult temper tantrum. Do whatever you gotta do to deal and bring down the anger. After all, anger only pisses off a pissed off bladder more and high levels of stress are never good for hormones or maintaining a form of sanity. Point is,  I know how hard that video was to swallow for many of us.  So, today, we shall talk about the apology. Today, we look at the pros and cons of this entire situation and try to do so in a mostly calm and mature manner.  Today we accept that we were hurt and angered by the whole thing and we put it away. Why put it away? There’s an excellent reason to do just that but we’ll get to that later…probably at the very end.    First there shall be talk of “the apology” .

Many people in both the IC and Endo communities (myself included) got pretty fired up about how nonchalantly these debilitating conditions were discussed.  A public outcry quickly commenced and many women and men who are affected by these conditions demanded an apology. Some demanded it in blogs others in Facebook groups. Some attacked the doctor and his sidekick directly and others promptly used this situation as a means to get more people involved. Regardless of which route you chose to take, the ripple effect was astounding. People have been talking about these conditions for days…I don’t know if we could have seen it yesterday or the day before because the pain was still too fresh but today, I can safely sit here and say that due to Dr. Drew’s mishandling of these conditions, people who may have never uttered the word Interstitial Cystitis or who have never googled an image of Endometriosis are now doing those things. And that, is a good thing.  We’ll just go ahead and put that one in the PRO column.

Anywho, last night on their show, Dr. Drew and Mike issued an apology and upon watching it, you’re most like going to be riding on a roller coaster of emotions throughout the entire thing. There’s relief that they are acknowledging  our outcry. There’s complete and utter disgust at the sidekicks comments (but we also must keep in mind that this guy is there only to be “that guy”. He’s like the new Howard Stern. All about shock factor and ridiculousness…we don’t need him to be nice. He’s not worth it and honestly doesn’t hold much weight).  There’s annoyance at the fact that there are inconsistencies in the story. There’s a plethora of feelings that will be felt in the 8 minutes of this apologetic explanation. Prepare…and watch

 The discussion on this situation begins at 02:22 and continues until 10:08.  After you are finished with that, fastforward to the one hour mark…1:01:00 to be exact and watch the “complaint” section of the show for another 5 minutes until 1:06:00 Trust me, you do not want to miss that second part.   There is also a caller with endo at 1:07:00 that is able to discuss her issues with the statements previously made. Click the link below for the video. * it is the first video on the page. Labeled- Loveline live archive 4-27

Dr. Drew’s explanation and apology to the Endometriosis and IC communities

Everyone with me?

I will start by saying that I appreciate the fact that he did apologize. Was it a perfect apology? Does it make up for the shitshow  that has ensued from the mishandling of these sensitive conditions? No, of course not. But, it was an apology. And…there was an attempt at an explanation. That does count for something. At least we were not ignored and completely blown off because that would have not been cool at all.

I am fully aware that we probably only heard a bit of that call. I’m sure that they screen their callers before they patch them through…maybe there was a conversation between Dr. Drew and that caller  that we didn’t hear. Maybe, Dr. Drew did have a more detailed discussion with that man about things that we didn’t know about.     Maybe.     It’s totally possible and I’m happy to keep that in mind because I do like to look at every possible situation in a case such as this but there’s a big problem with this particular “maybe”… we only heard what they allowed us to hear, exactly one and a half minutes of it, and what we were allowed to hear is the only thing we had to go on. So, it doesn’t really matter if they discussed other things “off air”. It matters what they put “on- air” and what they aired clearly was not helpful or sensitive to anyone.  I call that a fail.

I am ok with the discussion that happens at the hour mark and think that doing a podcast dedicated to  Endo and IC is the least he can do. Let’s hope it’s done appropriately with people that know the ins and outs of these 2 conditions.

I like the fact that he did say something like Endo and IC are horrible for the people that have to deal with them.That’s a true statement if I’ve ever heard one.

I do think it was a little ridiculous how much time was spent trying to make us realize that he “didn’t have the patient” and that he was only talking to the boyfriend…as if the boyfriend didn’t deserve any respect because he wasn’t the actual patient. The Taliverse™ was in no way a fan of that attempt at a self defense at all.

I do absolutely love that the asshole co-host called us “endometriosis lady walk people” I’m sorry but it’s f’in hilarious.  Mostly because I have no idea what that is even supposed to mean. I don’t think he did either. The endo community should harness that and put it on t-shirts. For real. It’d be epic. Just imagine…walking about at the mall with a bright yellow t-shirt that says “I am {insert name here}of the  Endometriosis Lady walk people clan” with some crazy cartoon image of an ovary or a vagina with a face.  I can’t. Stop. Giggling.  Someone please make me that t-shirt.

It seems a bit ludicrous that at the 1:07:01 mark the co-host continues to attempt to make this entire debacle about how Dr. Drew’s feelings have been hurt by being called names and being told that he’s uneducated. Somehow the “sad celebrity” card wasn’t workin’ for me. Wonder why.

I realize he’s not actually uneducated. He is a licensed practicing doctor. Not just a tv one. True story.  He is, on the other hand, not an IC, pelvic pain, women’s health, or Endometriosis specialist and that makes him “uneducated” in the sense that he doesn’t appear to study these areas of medicine specifically.

I do agree that those people who chose to express their anger with this situation by posting violent threats against Dr. Drew’s family,  using violent words, and extreme slander on their social media pages directly caused tempers to flare at the show and in turn probably directly prompted Mike to call us twats, tell us to suck his balls, and worsen the situation. (I’m all about telling people how ya really feel but there’s a fine line  when personal threats become part of the game)

To me, this apology lacked a feel of authenticity. It came across more like “oh shit…we pissed off a lot of people, time to try to put out the fire before it burns the whole forest” instead of an apology based on the understanding of exactly why his words struck some pretty painful chords in patients who often times are vulnerable and sensitive to anyone in the medical profession who makes it seem like what we go through is not as serious as we know it is.

I find it amusing that Dr. Drew either forgot to refresh his memory on things that he said in the original video or thought it best to flat out change the story. If I wanted to be nit-picky, I’d bring up how he said it was the caller’s “new girlfriend” when the caller clearly stated it was his fiance and that “this girl didn’t even have Endo” when the caller clearly said that she did. I kind of feel like the man who called with the question would know what his fiance had been diagnosed with. Don’t you? I mean, was the caller lying? Or did Dr. Drew forget? Or, is it possible that maybe the call was dramatized for entertainment purposes? Did Dr. Drew know more about the caller’s situation than was broadcast…and if so, shouldn’t that be stated so that we can tone it down 15 notches? I just feel that if he was going to pull out all stops for his self defense, it may have been helpful for him to let us know if the call had been screened (as they most often are in radio) and if the caller had backpedaled about his fiance really being a new girlfriend…and if she had really never been diagnosed with Endo.  That would make this entire situation just a tid bit different.  Since I’m not being nit-picky at all , *enter large amount of sarcasm here* I would have to base my caller screening theory on Dr’s statement to Mike during the apology broadcast  which went a little something like this…”What he was talking about was painful intercourse, if you recall?”.  Umm… well, honestly doc, I don’t recall. I don’t recall that caller ever mentioning anything about painful intercourse. Do you?  No, of course not. Why? Because he never got to ask his f’in question on-air!  Baffling . Baffling and Sneaky, I tell you, it’s Sneaky.  What does that mean? That means that the man spoke with Drew before going live and told him his question was about painful sex. Or it means that someone is lying. Or maybe that Dr. Drew hears things that aren’t real. Which would be pretty ironic and maybe a little funny.

I quit.  I’m done. I could go on and on picking apart this video and analyzing every piece of data that Loveline put out on this whole to do but alas, continuing to rant about it does none of us any good. We wanted an apology. We got one. We wanted him to do a show on these conditions. He said he’s going to. Now all we can do is wait and see what transpires from it all. Maybe his hopefully tactful and correctly informative podcast will help some people. Maybe it’ll help get IC and Endo some more publicity. Or maybe he’ll botch it up and we’ll have to start this campaign all over. Who knows? All we can do is wait and see. If it goes well, that’s great for us. That’s great for our cause. If it goes badly, that’s almost great for our cause too…how? because it’s publicity. It’s people talking about these conditions. Yes, if they botch it up we may have to re-educate and re-advocate but people will still be talking about it, looking it up, and learning that these conditions are real. That is always a good thing.

 

Remember when I said I had an excellent reason to put our anger away? It’s as simple as this. We are now in the position to really raise awareness and awareness is the most important thing for people with these conditions. We want the public to know what we have to deal with and how these illnesses can destroy a person from the inside out.  If you try to educate the public with anger they tune out. They move onto bigger stories and celebrity gossip.  Eventually the people who never heard about these conditions until this whole situation occurred will start to be annoyed with our constant pushing of our anger down their throats and we’ll be labeled as the “angry, sickly, whiny, broken bladder, bum reproductive system, and burning vagina people” or something of the like. Eek my imaginative skills are at an all time low today..had a hard time with that one.Anyway, that is what we don’t want . We need them to see us for what we are. People that have an uphill battle every step of the way, people that desperately wanted a baby and can’t because Endo has taken that away from them, people that have lost their marriages, jobs, happiness, and ability to function as a normal healthy person would and people that just want a little understanding.  We want them to view us as people who deserve respect. We don’t want to be the angry sick kids pouting in the corner. So, with that being said, put the anger away and let’s get to it.

Talk about it.

Educate.

Explain.

Share your stories.

The ball is in our court and we just got first round draft pick on the field.

Let’s use this to our advantage and keep people talking about these conditions. It’s the least we can do…people are hesitant to help us…we can’t be hesitate to help ourselves.

 

<3 The Taliverse

 

 

 

Be sure to check out some of my other rants on IC, CPP, and the struggles that come along with. 

A piece I wrote for those having a hard time believing these conditions are real and an easy explanation for the doubters

Be your own advocate..fight for you! 

How symptoms differ from patient to patient

 

Dr. Drew’s ignorance, arrogance, & insensitivity on Interstitial Cystitis & Endometriosis; two debilitating medical conditions that affect a combined total of 95-100 million people worldwide.

Dear Dr. Drew….

I find your lack of empathy concerning seriously debilitating pelvic conditions truly disturbing…and I have quite a few things to say to you about it all…wait…there are some people here who don’t know what went on during your Loveline show… Let’s cover that first shall we?

For those who aren’t aware of the Dr. Drew Pinsky and Loveline drama going on in the Interstitial Cystitis, Pelvic pain, and Endometriosis communities today, I’d like to introduce you to a major issue within our medical culture and that is the issue of ignorant insensitivity.

On April 24th 2014, Dr. Drew and his crew at Loveline took a call from a man in Florida who wanted to ask a question concerning his fiance’.

(For those who have not seen or heard the clip of this call…start watching at timestamp 30:04 and try real hard not to throw shit at your computer screen. It’s not worth it. All we can do is teach…speak out..and spread the word…http://www.ustream.tv/recorded/46661328 )

The man introduced himself and preempted  his upcoming question with a little background about his soon to be wife. The caller never got past telling the “good doctor” that his girl had previously been diagnosed with IC, endometriosis, and a plethora of other gastric issues, before Drew started a rant about the authenticity of these pelvic pain conditions and said that “They’re sort of — they’re what we call ‘garbage bag disorders; when you can’t think of anything else, you go …eh, well it’s that.’ So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?” He continued on to spew his uneducated opinion…and I say opinion, because he clearly never looked at a pathology slide containing a specimen of removed endometrium from a woman’s reproductive system that proved the endo diagnosis in the first place. I say uneducated because the man is not an OBGYN or a Urologist or even a Uro-Gyno….and while he is a board certified internal medicine MD, his focus is addiction and psychiatry… he honestly seems to know nada about the mechanisms of these conditions and he made that clear all on his own…

But, I digress. He continued on his rant for over a minute before he thanked the caller for calling and disconnected the call. The man from Florida with a question about his fiance’ never got a chance to ask his question. He instead  got an ear full of Drew’s “medical knowledge”  concerning conditions that he already knew his girl had been diagnosed with previously and had clearly accepted considering he was gonna “put a ring on it”. The man didn’t call and ask what conditions his girl might have when exhibiting certain symptoms, he called to ask about something else…something else that we’ll never know of because it was more important to Dr. Drew and the Loveline crew  to diminish, discount, and discredit the severity of the conditions this woman has than it was to hear the real question…which for the record may have been something as simple as “Do you think it would be ok to suggest different forms of sexual activity once we’re married to help keep the sexual momentum going” or maybe “do you think it’s inappropriate for me to ask her for a handjob if we haven’t had sexual intercourse for awhile” or even something completely whoa-esque like “can you offer any suggestions as to how I could be more supportive of my fiance given her  diagnosed conditions”. The world may never know. It could have been related, it could have been about supporting his girl, or it could have been about golf with a badger as a caddy. Who fucking knows? What it comes down to is that we will never know…the man received no helpful advice…and maybe now his relationship is shot in the ass because Dr. Drew told a once supportive man that these conditions were in his fiance’s head and that she needs to see a shrink instead of a doc.

 

The lack of empathy, concern, and morals is astounding here. Dr. Drew , in a sense, violated a Doctor /patient ethical code. His actions may have directly negatively affected a “patient” and in turn may have negatively affected almost 100 million people who suffer worldwide from these “garbage bag” diagnosed conditions. He seemed to care not…after the call ended he and his team continued to make a mockery of painful sex and pelvic pain , saying “another way that somebody could experience unexplained pelvic pain would be having sex with Alan Thicke”  who just so happened to be the guest on the show that day. Classy kids. Real classy. I hope  you get a UTI and it burns when you pee and you can have a minute understanding of what many ICer’s feel while attempting to urinate on a daily basis.  I mean, what if years down the road you find out that a woman in your life is unable to  have that son they always wanted because her endometriosis prevents her reproductive system from completing that task appropriately…or maybe her Interstitial Cystitis is so severe that sex could never be an option between the 400 acid urine infested bathroom trips a day. I know that I could never fathom popping a child the size of a watermelon out of my already sensitive and broken vagina. Ever.

Did that one sound bitter? I guess it did. I guess I don’t care. I tried my best to not come across as a bitter feminist-esque bitchnado throughout this entire piece…but alas, I feel that I speak for many when I say that that one is deserved. These chronic pelvic pain communities deserve to be treated with respect…after all, statistically speaking, many of the people suffering from these conditions are women…and women are the ones who make your children, birth them, care for them, and help care for the spouses. I’d like to think that maybe somewhere along the way you’d have some compassion for those people who have such important tasks on their to do list.

Assholes.

 

I am all for opinions, free speech, and the right to feel however you want to feel concerning a certain subject.

What I am not for, is direct disregard for scientific proven medical facts.

I am not for speaking about debilitating medical conditions lightly and then making a mockery of the people directly affected.

I am not  ok with the fact that someone who does not specialize in anything concerning the reproductive system or pelvic region is giving advice concerning reproductive system and pelvic region conditions. I think the people at Loveline should read my article on just how pelvic floor dysfunction, IC, and other pelvic diseases work together for a bit of enlightenment.

I am not ok with the fact that this man mustered up the courage  to call into a nationally popular medical advice radio show for millions of people to hear so he could ask for help about something that could have potentially been uber important to his relationship’s future success just to be lectured about the “nature” of the conditions instead of being heard.

I am not ok with the fact that people who may not have known about these conditions found out about them this way… This horribly inaccurate and insensitive way and are now maybe wondering if they’ll never find help and should just give up.

I am not ok with any of it…not one bit…and I think instead of an apology (because honestly, is it going to make us feel better? probably not…we won’t believe it anyway) he should do a proper show on these conditions with doctors who know…and people who suffer from them…and maybe just maybe he can help us rectify the shitshow he created.

 

Ellen Degeneres, can us ladies get a little help here? I’d love to talk to you about this…for real though.

 

 

All we have are our voices..

 

our stories…

 

our struggle.

 

So …Speak. 

 

Sincerely,

The Taliverse™

 

 

 

This  P.S goes out to women celebs and public figures who I feel would give a shit about this cause…the fact that no woman and her sexual pain should be mocked or discounted…

THIS IS A CRY FOR HELP!!!!!!!

Eve Ensler, Ellen Degeneres, Tyra Banks, Susanna Kaysen, Alice Sebold, Amanda Fucking Palmer, Jennifer Lawrence, Ellen Page, Kelly and Sharon Osbourne, Alicia Keys..and all your friends….if you guys could ever find the time..help some ladies out. We could use all the support in the world.

 

 

Be sure to check out some other articles by yours truly that help explain pelvic pain conditions to the non-believers and touch a bit on what life is like for those who suffer with these conditions.

Like this one

 this one

oh, and this one 

yea, This one too .

 

No friends are better than fake friends.

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Someone asked me the other day if I missed the friends I lost during my journey with IC and other Chronic Pelvic Pain conditions. Almost immediately, the asshole in me laughed out loud  and in the most sarcastic tone I could muster asked “why… should I?”

I guess it’s a legitimate question for those who don’t know me well enough to not waste the time asking a question like that in the first place or for those who really do believe in that whole “once a friend always a friend” thing. What it comes down to for me is simply this… and I am so bold as to say that most people would do much better if they followed the same path…. If you have to let someone go because they cannot, will not, or dare not make an honest attempt to understand, support, and gain knowledge about the conditions you suffer from, they were not deserving of your love and loyalty to begin with. It’s not mean or overly harsh it’s just what it is and something I came to terms with a long long time ago.

I feel that if more people were more confident in the details of their struggle they would find others who respect the shit out of that same struggle and who truly deserve to be in their lives. I find that the lack of confidence in the struggle gives those “friends” who have been grandfathered in 2nd, 3rd, and 7th chances based upon history and not upon any amount of growth or respect. I have lost people because of these conditions and I thank God and the bladder devil every day for that fact. 

I look at it like this…if it wasn’t for my struggle with these incurable, insufferable plagues, I would be stuck with those incurable insufferably awful humans that once tried to convince me they were, in fact, my people. I’d much rather be proud of my pain and have real people in my corner than hide it and rock out with all of those bi-peds who want nothing more than to hide from the shite we all have to deal with and be ashamed of us while we try to deal with it. 

Tis’ all. Ramblings concluded.

What? Did that sound bitter and mean? Stop being so sensitive.

Someone has to say this shit….

 

 

The Taliverse™