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™

Why we can still be who we always were even though we aren’t able to be exactly where we thought we would be.

SEPTEMBER 24th

What are some things about you that the IC hasn’t changed? We often times talk so much about how it changed us that we tend to repress the things that we still hold on to. What do you still have that IC hasn’t taken away?

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Below are the answers  I’ve received for IC Awareness Month daily topic # 24.

  •  I am still brutally honest…maybe even more so now. I am sometimes an asshole…I am outspoken and not ashamed of much of anything. My bladder hurts and sex can be tough ..so what? They’re judging? I don’t give a shit. It’s not their problem. It’s mine. I do not embarrass easily…and I still can’t stand those who are ridiculously sensitive about content. For instance.. “Oh no…she said the word vagina…burn her at the stake!!!”Seriously? Bugger off. I have no problem realizing that people who go against me aren’t supposed to be in my life. If they are meant to be there they’d be supportive. Bye bye if you’re not of the latter. I am a perfectionist yet I am terrified at failing so much to the point that sometimes I don’t even try. I am still a singer. I am still a writer. I love hard. I can read anyone by their eyes and what they got goin on behind them. I have saved myself a lot of trouble from that talent. I can read lips…very well. So don’t talk shit about me in the corner. If I have my glasses on and I catch ya…I’m callin your ass out. I will forever stand up for the underdog and I won’t ever judge those based on the things they do unless they knowingly do fucked up things. I relate to people in the hopes that people will attempt to relate to others. I still rarely trust anyone and believe heavily in energy and mind over matter. Yep. I ain’t changed that much at all…
  • A positive attitude, my faith, love in my heart and my smile.
  •  I still have me. I’m still a person. I recently became disabled through Social Security Disability due to my IC and other medical conditions. I’m grateful for it but I miss my career and income. I’m going thru an identity crisis cuz my career defined me. I’m trying to focus on the core of who I am. That hasn’t changed. I’m smart, funny, compassionate, a loving mother and fiance, a fighter of injustice, an animal rights activist… Some days are better than others. I’ve been asked when questioned about my depression “Do you have suicidal thoughts?”. I laugh. Show me a person with debilitating chronic illness and pain that hasn’t thought of giving up and ending the pain. Doesn’t mean I will do it.
  • I’m an artist, that hasn’t changed. In some ways it has made me a better artist. I have more time to create and I am more in touch with my feelings. I sew or I am drawing and if I am not really physically creating something then I am sewing or drawing in my mind, know that eventually it is going to be on paper for my next project. And, I am a grandmother of 7 wonderful children, this is my greatest joy in life! My husband is always there loving me and my mother helps me stay sane. She and I sew together every Thursday God willing. IC has stolen many things from me but it can’t take away these very precious parts of me that give me my “living” labels. Not IC labels but who Sherri is, who she was before IC.
  •  I’m Scots-Irish with the red hair, freckles, temper, impatience, sarcasm, cynicism and sucker punch to match! 

    Those things will never change. But, there’s another thing I can’t & won’t change either:

    I HAVE HOPE.

    Do I really BELIEVE my life will ever be healthy or easy? NO. So, I just keep *believing* a reason to *hope* might find me someday…

  •  I Never let IC take over my body! I am a mother and that will never change! I remain positive, hopeful, caring, compassionate, and loving most days  Humor gets me through most situations! I Live life to the fullest and never slow down. On my worst days I push through the pain and my tears are just a release of negative energy. It reminds me of how strong I have become. I will not go down without a fight! Im to stubborn to give up always have been!
  • Still feel blessed! I have more issues then just IC so shoot I got this!
  •  IC has not been able to destroy my faith, or my need to socialize with family and friend. The One that lives in me is greater than IC.
  • I still have faith, hope and love.
  • My sense of humor. You need one to deal with this disease.
  •  I do martial arts. There are external and internal martial arts. IC is not taking that away from me. When it hurts too much to train externally, I go back to the internal arts to try to heal myself, or at least practice routines in my mind so that I don’t lose them to my inability to physically repeat them with my body over time. It is a language, simply of movement – use it or lose it. IC isn’t taking it from me. I’ll fight to the death for my kung fu, my qigong and t’ai chi chuan.
    It also hasn’t changed how much I love animals. If anything, strengthened it (which I didn’t think was possible! My love for animals has been there forever, run deep, and always trumped humans). They listen. They comfort. They KNOW! They don’t judge or mock. In fact, my dog has become my service companion. He somehow knows before I do when I’m going to have a flare up, and he lets me know. He’s sensitive to those who are very ill. He has even learned (taught himself, somehow) how to use the leash as leverage to help me get around when I can barely walk, and knows where I need to go innately.
  • But the thing that IC didn’t change is my fighting spirit. My life has good days and not so good days but I don’t let IC determine what kind of emotional day I’m going to have.
  • My smile!
  •  I’m still a child at heart! I learn to enjoy the moments that I am healthy and show off my inner five year old with the friends are family who are always there for me!
  •  My Faith in God!
  • I am the same person I always was! I an awesome btw. I have IC.. it does not have me! Still living.. laughing.. loving! Just also hurting!.
  • It has not changed my faith in God. It is He that gives me the strength to endure the ugliness that comes with IC.
  •  I think my IC has made my even MORE caring and concerned about others . I have also kept my sense of humor I enjoy making others laugh, it make me feel better too. Hope is alive!
  • IC has not changed how hard I laugh at my hilarious husband, how much I love being outdoors, how much I love my wise family, how much I love teaching voice & directing choir, or how much I enjoy a creative project.
  • IC has taken a lot away from my intimacy with my husband but there is more to life with your spouse if you truly have a loving one. I hope for remission or a cure.
  •  IC can’t take the love I have for family and friends
  • My love for Daphne Rose and her daddy. That I love people despite their large attempts at pissing me off daily lol. And my love for MOVIES!
  • My faith in Jesus Christ! The amazing blessing of my wonderful marriage!
  • I play soccer, lift weights, and run. I am extremely adventurous. I am getting my Masters Degree in painting because IC can’t stop me from loving to do what I love to do
  • Since having IC for over two years now, I still have my faith in God and faith in my marriage and the love me and my husband share. My husband has been wonderful at being committed to taking care of me being supportive and willing to learn as much as he can about my illnesses. He never misses a dr appointment. We fight for each other our marriage our disabilities. Hes been like my advocate. We never give up on anything. I like how someone said I have IC but it doesn’t have me.
    Im also still the same loving mom I am to my son and daughter since I had my daughter nine years ago. They keep me young. I just have to be more careful when playing with them and they know to be gentle with me especially when I tell them, mama hurts. 
    I look at all the positive to help myself cope. Sometimes its overwhelming when I am dealing with all of my physical illnesses and mental illnesses on top of everything. Im still very blessed.
  •  I still have a great sense of humor and laughter really is good medicine!
  • My gift of gab. LOL I still talk all the time. Helps to get the burning and pain off my mind.
  • My ambition. I’ll still work to get the education I want, strive to have the career I want, and hopefully someday have a family, ic or no.
  •  My Art, Writing.
  • Determination!
  • My faith in the Lord! In fact, it has grown stronger. He works in such mysterious ways and I’m thankful for every bit of grace (including medication, even though they have side effects).
  • IC hasn’t changed my ability to see the brighter side of things. I often heard people throughout my life say- just wait until you’ve suffered something really bad and THEN you won’t be so positive anymore. Ive had IC 25 years- I have my ups and downs and have struggled with depression BUT I always still manage to look for the best in a person, the silver lining in any situation and especially because I have with IC, I MUST look ahead with some kind of hope and be really positive! (or I’d be dead:(
  • I still look younger than most people my age! even after soo many sleepless nights
  • My greatest pleasure comes from spending time with my family. And that’s one thing IC did not take from me. I can still enjoy my loved ones. I still believe in Christ. I still have faith and hope. I have lost some friends along the way, but if they were real friends they would still be around. I lost my marriage, but was blessed with an even greater man. I honestly have to say that I have gained a lot from having IC. I can focus and appreciate WHAT really is important in life. IC has humbled me and has given me a different perspective on life. I have learned that living in luxury is not what makes us. Love, laughter, family to share that love and laughter with is all I have and is all I need!!!
  •  My love for my family; that’s what made me so determined to keep living and make life changing decision’s…. hence major surgery “Bladder removal” gave me my life back and has allowed me to move forward after so much pain and darkness….
  •  Faith! I still have faith.
  •  I have Interstitial Cystitis, but it doesn’t have me! Thankfully, I have always been an overachiever, so most of the time, I still do the things that I did before, although sometimes not at the same level. Being on the diet is tough at times, but it is worth it! I was diagnosed in 2005 and was able to teach until May, 2012 when the stress was setting off my IC and TMJ too much! I am still working with children at church and an Art Class. Retiring has given me time to start my blog Ms. Nancy’s Nook.
  •  My love of reading has only been enhanced by extra bathroom time!
  • My sense of humor. No matter how bad things get, you have to be able to laugh!
  •  I’ve learned 2 truly embrace each moment of each day that I’m pain free. My son has taught me so much about endurance & God has increased my faith as I cry out 2 Him much more frequently. I have tons of empathy for those who r having a ‘bad’ day. I now go the speed limit – LOL – the days I’m pain free & actually take the time to enjoy the ride w/o stressing about the police.
  •  I still love my hubby, my pets, my clothes, found out more about myself since getting IC because I think it slowed me down so I could step back and say “Who is this person?”, found out I wasn’t half as stubborn as I could be. The only support I have as far as IC goes is my hubby & my Urologist. Everyone else just rolls their eyes when I say I can’t eat or drink something. I fake a lot of smiles & hold back a lot of tears.
  •  Definitely encouraging people to get familiar with this disease, and not to judge a book by its cover every. Single person in this entire world is struggling with something and personally that is my biggest problem with this disease. I see here on Facebook happy families going. To Disney world or tropical trips and I say. I was twenty when I got diagnosed and doc thinks i had it way way younger due to my medical records. Why can’t I just be a normal 27 year old planning trips with my girlfriends exploring the world with my daughter then I woke up going in a vehicle is an issue I come home sobbing because I’m in so much pain I never ever respond to invitations I can’t and that’s why so many ppl walked out of my life. It’s all in my head if someone says that one more time I think I may send every single medical record to them which would most likely be four to six boxes worth of medical material and put READ this
  •  1. I’m still a people person…can be tough because I spend so much time alone: in bed or in the bathroom…Facebook and email helps with that, for sure. 2. My sense of humor hasn’t changed…I love to laugh and have a good time with my family and friends. When I feel good, I want to be out and about having a good time, enjoying myself. 3. I am still a wife and a mom. This will never change, though the WAY I get to be a wife and mom has changed because of IC. 4. I am still an intellectual, singer, artist…
  •  IC hasn’t taken my strength away. If anything it has made me stronger.
  •  I speak my mind, more so now.
  •  If anythings its made me stronger!
  •  having IC hasn’t changed my faith or my optimism! I still things in a clear view! I haven’t changed how loving I love to be to others!
  • I’m still loving, compassionate and I still care if someone else is hurting. I still stand up for the underdog and I am passionate about the people and causes I believe in. I am still honest to a fault and if I want something I usually try to get it, or if I want to know something I usually just cut the crap and ask. I am blunt. I don’t know how to be false or silly or bitchy for the sake of it. I don’t beat about the bush and I still can’t stand pretentious people or game players. I may not always shout the loudest anymore but the old me is still there, even if sometimes she sits back and takes her time and listens a bit more these days and doesn’t scream from the rooftops or dance in the streets. I’m still a good mum – although restricted physically in some ways, in others the IC has made me even stronger – as I’m more conscious of how lucky I am to be blessed with my two children and how big a job I’m doing on my own and not doing it too shabbily. They are both loved, cuddled, fed, clean (mostly), listened to, encouraged, nurtured… That much has not changed. The three of us are a tight family – even tighter than a year ago, I would say. I still love cuddling up for bedtime stories with my son, or doing music with my daughter, or curling up with a bowl of popcorn to watch a film together. I am still a writer. I am still a piano player. I am still a singer. I still love reading and hot baths. I am still fiercely loyal to my friends and equally can quite happily let go of those who have let me down or betrayed me if it’s serious enough to warrant that.   www.strugglingtosurvive35.blogspot.com 

     

These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!

 

Some people have to urinate more than 50 times a day. Hard to imagine? Just think of what your life would be like if you had to spend the majority of it on the porcelain goddess.

SEPTEMBER 23rd

 If you are an ICer who suffers with frequency, how many times have you peed today? It may sound ridiculous but it goes to show the non-Icers how stressful, time consuming, and redundant a task such as emptying one’s bladder can be. Most people couldn’t fathom having to “go” more than a few times a day let alone upwards of 20-30 or more. This is to give an idea of what it’s like.  How many times does it feel like you had to go?  Sometimes it feels like you spend an entire lifetime in there.

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Below are the answers  I’ve received for IC Awareness Month daily topic # 23.

  •  I just had to do a 3 day log of how much I go. I thought it was 50-60 or so and it really ended up being over 90 times a day in a 3 day period. I was SHOCKED to say the least. I really did think I was more at the 50-60 mark of things. The only time I really go without peeing is for maybe 3 hours at night
  • I had to keep a voiding diary for an old I do. If I drink as much as we should drink in a 24 hour period I was going about 40 times. I don’t drink nearly as much as I should so I don’t literally feel like I live in the bathroom but I would guesstimate I go 25-30 Times a day drinking less fluids.
  • Been up for 2 hours went four times already. When I go I have to push it out and I have urgency ALL day! I can go anytime it never goes away!
  •  At diagnosis 6 months ago I was going 40-45x daily. At 6 weeks out from implantation of neurostim I am down to 6-7x daily. During flares I go about 10-12. I feel blessed the neuro stim worked better than we thought…very little pain during resting periods and moderate to severe pain during excessive activity. Of course sever pain during a flare or with menstrual cycle but no more frequency and urgency.
  •  i never counted but i could easily say 50. Ive been sick from holding it last night so i could actually get some sleep for once. It gets old. I go pee and make it to my bed and literally turn around and have to go back. Find a cure already!!
  •  It is not the daytime pees that get to me. It is the 10 trips a night…just as I am dozing off. Failure to comply with demands can lead to accidents so I pop up and down all night like a jack in the box!!
  • I counted one day, 19 times. It sucks!!! Nobody knows unless they have this. Constant pain. And going to the bathroom. Its embarrassing too.
  •  I actually have the opposite affect to where the muscle doesn’t work to go and doesnt empty all the way so I can hold the battery acid pee. I feel like I release poison every morning. I have to take antibiotics all the time. They put me on a tricyclen antidepressant immediately to help me sleep. I also take cystex to coat my urinary tract a lot as I have a lot of bladder/kidney infections since I don’t empty all the way. But I can sneeze or cough & omg I’m running to the bathroom.
  • When I first started it was a good 40 times or more but now I would say 10 times with one to three times at night
  •  Every hour thru the day and every couple of hours at night. Exhausted!!!
  •  Every 30 to 45 minutes during the day. Sometimes lucky with an hour to an hour and 15 minutes without going. At night super lucky if I make it three hours.
  • The worst is nighttime in a bad flare. I’ll have to get up every 15-30 minutes… sleep… yeah right! Not very nice for my hubby either.
  • anywhere from 20-60x a day
  • I realize as I read the comments that I am accepting my condition as normal. It isn’t normal!!! Normally, I have to pee 2-6x an hour when I am awake. AT night, I wake up 3-4 times, never less. This is without pain or burning over a level 3. If I flare, I will have to pee every 3-5 minutes at first, then if I don’t take something to stop the bladder spasms, pain and burning, I will get to the point where I have to stay seated on the toilet, trying to “go” non-stop. I have not had a terrible flare like that since December 26, 2012, thank you God! However, I have been in a Pain Management Rehabilitation Program since February 2013 that has taught me how to care for myself by relaxation practices, mindfulness practices, and practicing living in a different way. It is challenging to do all of the thinks I have learned, however I keep working at it!
  •  It’s 4:44 in the morning been up 15 min & have peed twice … Normally I go every 15-30 min all day … But I thank God there is only pain if I try to hold it !
  • I don’t really count… just a lot. I notice frequency more when I am at my synagogue. I am in the bathroom 5 to 6 times in a 3 hour time period. I need to go more often, but get embarrassed and try to hold it longer
  • During a bad flare anywhere between 25 to 40 times.
  • yesterday every 8-10 mins and didn’t stop all day…
  •  At least 20 since 11 am. 8 or more overnight. It sucks.
  • At least once an hour… More at night it seems
  •  More times than I want to count during the day 40+ And 10+ during the night. I can live with the peeing and long as I don’t have to hold it. It’s the pain that I can’t handle.
  •  Um…. probably about 7 or 8 so far, I think. At diagnosis in 2004, I would urinate 40+ times a day. With medication, we got that down to 20-25 times a day, but it was still too much… so I did the Interstim. Now, I urinate somewhere between 8-15 times per day on average. Right now, it’s on the higher end, say 15-20, because I’m super allergic to fall pollens (ragweed, goldenrod, etc) and my IC goes nuts when my allergies do, but in general when I’m not flaring too hard it does fall between 8-15 times. ‘Course, there is still pain to deal with, but at least I’m not needing the bathroom every 5-10 minutes!!!!
  •  Before I had interstem .. I peed 60 times one day
  • there are days that I go 40-45 sadly this is the norm- so is falling asleep on the toilet — convenient but uncomfortable!
  • Including nights probably an average of 40-50 times a day because the pain is unbearable! 😕 It is so embarrassing! Sometimes I feel like other people are counting how many times I go.

  •  I go at least 3 to 4 times minimum every night so a good nights sleep is something I don’t have any experience with!
  •  about 3 times an hour…I’d say about 40 times per day…..over 2 years of this, it is starting to get really really annoying, and depressing. I feel like my life is ruined….I can’t go out and do anything anymore . Everyday I pray that someone will find us a cure!!!
  • At diagnosis in 2001 about 85 times per day but today about 5 or 6 times per day.
  • On a good day, every hour during the day and 3 times from midnight to 6 am. During a flare up, at least double that with every 20 to 30 minutes through the night. Impossible to ever feel rested. Also impossible to not think about it. My mind is never free of bladder thoughts. As Melanie said, it gets old. Diagnosed 6 years ago and I’m so sick of it.
  •  1-2 times an hour. Luckily never at night. I brought the number of bathroom trips down by 40% through pelvic floor therapy. It is definitely worse a try if you are plagued by spending hours on the potty.
  •  Probably three times during the night (WITH AMBIEN CR USAGE). Without it, it would be every hour. During the day, probably easily 35-40 times
  • At initial diagnosis it was upwards of 60 times a day. With some bladder retaining and diet modifications it is now as few as 8 or 10 times on a really good day but about every hour or so on average. After a glass of water it can be every 5 to 10 minutes for at least half an hour. I have to limit my liquids to a sip here and there when I dont have easy access to a restroom.
  • Lately it’s so bad I swear it feels like I go 100 times a day.
  •  I go 25x per day but on a, very bad day it’s around 40.
  •  I didn’t keep count today…. But, right off I would say 25 at least, maybe more. Today was a bad day. I have been dx since I was a teenager. Now, at almost 30 it is somewhat better, but I do not eat the way I should all the time. Today was also just a “bad day”. I’m sure you can relate. It just sets off out of nowhere!
  • well it was 14 times yesterday. Keeping a log for my urologist.
  •  I’m up to about 50 times a day. I’ve got so many books in my “library” because it seems like I spend so many hours a day in there! But I’ve found that reading a good book helps distract a little from the agony of having IC.
  • I go at least every hour and that’s a good day sometimes I can’t make it to the grocery from my house without feeling like I’m busting
  • The most time I go is at night its always worse at night but every 10min I’ll go &its just a lil dribble I went 11 times one night getting in&out of bed! Its horrible thank God I have lidocaine gel!
  • Thus far today about 20-25. My daily total is usually 45 or more, with about 5 to 7 times getting up through the night, and if I do not take the time to get up and go to the bathroom as necessary, my bladder punishes me without mercy. People have no idea how discouraging and disruptive this symptom alone can be, let alone adding pain, burning, incontinence, etc.
  •  6 times. I woke up at 6am, then commuted to school in NYC for an hour. Then, during class, I had to pee the whole time…so so distracting.
  •  Last time I tracked it, I peed 28 times in a 24 hour period. During the day I can plan on having to go every hour which greatly limits how far from a bathroom I can be at any given time. Sometimes I have had to pee every 30 mins sometimes I get a whole 2 hours and that is heaven for me. Last week I went to pick up my Mother at the airport and of course had to pee when I got there but when I looked at the line to get through security I realized I could never stand in it long enough to get through it. I would have to pee before my turn would come and I would forever be getting back in line so I don’t fly anymore. When I go to the movies, I often miss an important scene and I am usually the only one in the theater getting up and leaving 3 times or more. In an office environment I can’t sit through meetings that last more than an hour without excusing myself. It is amazing how challenging the world can be for people with IC when all we need for dealing with frequency is more understanding, bathroom breaks and bathrooms. I am physically capable of hiking an 8 mile trail but can’t hike more than 30 mins from any bathroom for hikes that are popular and populated (no place to go in the trees). On road trips I have to stop at every rest stop just in case there isn’t going to be one an hour after the last one. Going gives me another hour. IC has changed my life and none of the medication I have tried helped and most I couldn’t tolerate.
  •  I have “mild” IC, more urethral burning and pressure than anything else, but I still go pee about every 90 minutes. More often in the warmer weather when I drink more fluids. I don’t get up at night very often but if I do, it’s usually about 30 minutes to an hour after I’ve gone to bed (and I peed before I went to bed). It’s always a surprise when I go, never know how much or how little. Sometimes I pee like a horse, sometimes barely an ounce. All feels the same before I have to go.
  •  Yeah I don’t count anymore either but outside a flare probably every 20 min when awake, like 5-10 times when sleeping. While flaring could be every 10 min all day and all night long
  •  6 times in 4 hours. When I wake up, I go about 3-4 times in 90 minutes.
  •  I go about every 30 min. or so. Sometimes more sometimes less, but on average it’s 30 min.
  • 40-50 times
  • I haven’t counted in a long time, but when I was first diagnosed and told by my urologist to count I eventually lost count at 70+ daily. I was like my goodness there’s no need to count past that number, I was so tired of counting and peeing/peeing and counting. Needless to say I was diagnosed as having a “severe case” of IC
  •  On a pretty good day i go around 10-15x’s a day but on a bad day i go prob around 30-40x’s a day
  •  25-35 during the day. 4-7 times during the night.
  • 30 on a good day. Up to 50 during a flare.
  • so far i have gone every 15 minutes today. last night was awful, i don’t think i got any REM sleep.
  •  It used to be every 45 min – an hour, but thanks to the IC diet, I have managed to stretch that to every 2 hours or so. It depends on the day, but I go roughly 8-10 times a day. Not ideal, but definitely better than it was a couple years ago. The “feeling” of needing to go is always hanging around, but at least I’m not making as many mad dashes to the restroom. (unless I cheat on the diet lol)
  • On a good day 12 times but on a bad day it can be as much as 20. I even have the interstim implant and its only taken it down to maybe 8 times on a really good day. It doesn’t help with the pain and pressure anymore.
  •  I have been up for 3 hrs and have been in the bathroom 16 times I take ambien at night so I get about 2 full hours of sleep without going to the bathroom after that it’s in the bathroom ever 30 min or so the last voiding diary I did was over 60 times a day and around 6-7 times a night within a 6 hr sleep holding it is excruciating
  • On a very good day I go 25 to 30 times on a bad day up to 100 on average its about 45 to 50. The feeling of having to go never goes away some days the pain is less than others and I can wait longer. The hard part sometimes is actually being able to go. It takes a lot of relaxation and concentration to get out enough drips to relieve the pain for a few minutes. Sometimes I go every 30 sec to a min and just never leave the bathroom for an hour or two  It’s amazing how fast my pants buttons fall off, zippers break and underwear get holes on the sides from going so much LOL.
  •  I always lose count but usually 4 times for every 1 time a normal person does. I also keep a maxi pad in to catch the leaks!
  •  Approximately 18 to 20 times in a 24 hour period on a good day. Triple that in times of a bad flare. I’m very curious to know exactly what medications others are taking.
  •  During the day I was going up to 45 times a day and up to 20 times at night. I have totally switched my diet and now I’m in the 20-30 times a day. I’m on several medications also. Most of my pain is when I try to hold it in! If I’m in a flare I can go up to 40+ times a day and I’ll be in way more pain!
    I keep a journal to record the time, PH levels in the morning and bedtime, and the pain level.
  •  I go 20 times before lunch. Its not a huge amount but I go…
  •  During a flare over 25 a day, but the Elmiron, hydroxazine hcl and vaginal suppositories that my pharmacist came up with have made a Hugh difference plus watching my diet
  • Around 10-15 times a day I think. Once in the night. Usually it equals to once an hour but since I’ve been on the full dosage of elmiron (since 5/31) I’ve been able to go sometimes up to 2 hours without needing to go.
  •  It varies greatly for me, but I can tell you that in my first hour and a half of work yesterday, I went 5 times. After that I was back down to every half hour/hour like normal.
  • Every hour
  •  About 8-10 times per day, 1-2 at night. But when I need to go, that bathroom had better be right there or I hurt. I deal with pain from needing to go more than frequency.
  •  I go 18-25 times a day.
  • on a flare up day every 15mins and up to 57 times a day… on a normal day every 30-45 mins. Being tested tomorrow to see if dr is going to do botox or the intra stem. My husband and I have a joke ..Instead of pulling a camper we need to haul a port o john
  • Before my 1st surgery it was about 60 times a day.Now its about 30-40, but going in for 2nd surgery on through 2nd.
  •  On meds every 15-20 minutes, sometimes 45. Xanax slows it down a little but when I just did a voiding diary after being on the diet again it was still 25-35 times a day. .. at least 2 times a night and that is while on Ambien. At least I fall right back to sleep. I want to go to parents weekend at my sons college 4 hours from here but not thinking it will happen as it is not a trip with a lot of places to stop along the way. And with the urgency and pressure it is extremely painful if I have to hold it.
  •  I need to go every 15 mins during the day and every hour at night.
  • At least 1-2 times an hour…around the clock. Get very little sleep. And now that I am facing surgery due to my bladder dropping…due to my hysterectomy 10 years ago…doctor hopes will help with the horrible UTIs I get every month…makes it so much worse.
  • During the day every 30-45 mins and at night about every 30 mins. I started drinking room temperature water and it cut it down from every 15 mins. I also take benadryl at night that seems to help.
  • During bad flare ups which is a lot, I’ve counted around 65. Sometimes up to 80 in a 24 hour period. There have been times I’m so exhausted and getting out of bed to go and my bladder makes me feel like I still have to go I end up falling asleep on the toilet lol. My husband will say, I heard you pee two or three times why didn’t you get up? I’m like cuz my bladder won’t completely empty at once and I’m so tired I don’t mean to. Lol. He’s gotten used to it and just helps me back to bed. Its rough.
  •  its only 5:30 in the morning, and its already been 5 times
  •  I used to run between 30 – 41, but now with the stimulator it’s less. Unfortunately it’s worse at night, so there are rings I go up to 21 -22 tunes per night. Can’t get much sleep that way, especially when each of those times takes a long time because of retention, sometimes catheters.
  •  Between yesterday and today…over 40 times
  • This is shocking to people who do not have bladder problems. On a bad day, it is once every 10 or 15 minutes, most hours. My maths is bad, but over 12 hours this works out as 48 at least. Plus a good few times in the night. At least 50 times in the 24 hour day.
    On a good day, it can be once an hour or occasionally even two hours. So I suppose the very best, frequency wise, with a good night as well, is about 12 to 15 times in the 24 hour day. This is rare though.
    I suppose the norm is somewhere in the middle. 30 times per day perhaps? I’ve never actually counted over a 24 hour period. Often I have to go in one ad break, then in the next 15 mins later when watching TV; that’s quite usual.
    Some poor soul the other day said to me in passing ‘oooh I really needed a wee half an hour ago; now the feeling has just disappeared; do you ever get that?’ I just smiled and said nothing. Really, there was nothing to say.

 

 

 

 

 

 

 

 

These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!

 

A thank you note for all who have stood by when things got complicated. A thank you compilation if you will…

SEPTEMBER 22nd

Who has stood by you the most through your struggle with IC? Write a thank you note to the person or people who have helped and supported you the most throughout this journey.

Below are the answers  I’ve received for IC Awareness Month daily topic # 22.

write-thank-you-med

  • MY HUSBAND AND FAMILY
  • Dear C…Don’t want to name you in public as I know you’d hate that; your support has always been so quiet, unassuming and steady, and I know you would hate me to shout from the rooftops about it, yet I would not have got through the last year without it. We’ve been friends for ages, but it developed slowly, and if someone had told me a few years ago that when I developed a chronic illness you’d be the person who stuck by me the closest and was the most reliable, supportive, sympathetic and understanding, I’d have been surprised. Not because I didn’t know that you were all of these things, because I did; but just – well – life surprises us sometimes. I thought there were other, perhaps closer or more intensely close friends, who would have rallied around more dramatically; yet some of these quickly slipped away, and some just went into hiding until things got better (they haven’t, but you don’t ever seem to mind if I spent an hour moaning about my pain, or if I never want to talk about it at all and just want to pretend it isn’t happening). Other friends have been there on and off, and family, but nobody that I have felt totally relaxed with all the time.
    So. Thank you for being the most supportive person in my life over the past year.
    You have helped me in numerous ways: from regular visits to me in hospital last autumn, to listening to me rant and ramble, to seeing me through manic days on the wrong painkiller combo and silent car trips when I was so depressed at the break up of my relationship, from staying the night with me after my cystoscopy, leaving your small children to do so, to taking day trips out with the children (even if I start arguing with people because so stressed out!), to supportive texts most days and just knowing you are always there if I need you…. you’ve had my children round to play numerous times when I just felt too weak to get through the day…. emotional support, moral support, and practical support, you’ve done them all. And you know who you are and you are amazing and don’t ever, ever think that I don’t appreciate it or that I don’t value you really highly. You’ve been a total rock for me this year; my little sis. I am here for you too, don’t you forget it. Thank you, truly.
  •  My mom and my daughters, but especially Mark who has been my shoulder to cry on and a very understanding man. Even though I don’t like being taken care of. He has so much patience with me.
  • My Husband and my children . He goes to my doctors appointments, picks up the slack when I am having a bad day, gives me space when I need it and understands how much I am going through. He too had to sacrifice a lot since my diagnosis almost 10 years ago and I can’t express how much I appreciate his sacrifices and support. My kids help out when they can. I don’t expect them to grow up too quickly and I want them to have a care free childhood. My daughter runs errands for me and my son asks me how I am feeling when he sees me struggle. Those little gestures mean a lot to me.
    Starting a support group has been the best thing. Not only do I get support but me sharing my knowledge and offering support has made having IC a lot easier. I have developed some awesome friendships with my IC Sisters and I will forever cherish them.
    I feel for the ones that do not have support and hope that you can find a support group, local or here on fb that can give you the support we all need and deserve.
  • My ex-husband. He stood by me when I was bedridden and took care of me. He empathized with me. He paid for life changing acupuncture. Acupuncture works. It put my IC into remission for years. Thank you Adam Steiner.
  •  I would like to thank my husband, my daughter Corina Medina and my mom Canez Louella for having patience with me during this very difficult time in my life. I know that I can really be moody during my flare ups but I hope you know that’s caused by my pain. Thank you for being by my side during my biopsy, cystoscopy and all the other procedures I’ve had to endure in my quest for a cure or at least some pain relief. I love you all!
  • By all means my husband Brian Hawkins! W/o his shoulder I would die. Nobody understands what a daily struggle this is but him.. love you
  • My husband! If he was not there I don’t know what I would do. He is my rock! He breathes for me when I am holding my breath trying to avoid the pain. He makes me feel beautiful even when I know that I sometimes i look like hell. He is the love of my life. He never complains he just does whatever is needed. James when God gave me you he gave me the most wonderful spirit to grow old with, raise a family with, to laugh with, smile and be comforted by and to love all of these 36 years. I love you so much!
  •  Most definitely my husband Tad Savoy. I hear other women who have this disease talk about the lack of understanding from their spouses and it makes so grateful to have him. I wish every woman could have such an understanding, patient and compassionate man. He brings home my favorite comfort foods – including $6 blueberry juice; brings me my medicine, heating pad and warm blanket from the dryer; prays for me at night when we go to bed; reads to better understand it, and does all of this with a smile on his face. This disease is difficult to live with, but I know having him by my side through it all has helped lessen the pain. I love you Tad Savoy!
  •  I can just say thank you to my awesome husband and friends who is always there! And my 2 beautiful daughters – thanks to you all!
  • For me a couple of close friends. The one that supported me at first was my doctor. There were days when I saw her and would just cry. She is very caring .
  • You guys did…and I thank you very much for the knowledge and experiences you shared..
  • My father. His worry and concern for this disease makes me know that I am not alone. Any surgery I had in my past he’s been there. Paid co pays when I could not afford them. Wants to get to the bottom of IC as bad as we do!
  • My mom Christina Knauss. She has been the most understanding & supportive person. She hadn’t judged or walked away in my time if need. She’s the best!!
  •  really it has been my mother. she understands what pain and stress can do to ones life. i love mom.
  •  My amazing fiancee Lee Peppers for always supporting me & being by my side,even when Im hating the world.My children who help me with even the smallest unsaid things that are big things for me.It doesn’t go unnoticed. Thanks for helping me through the unbearable days.
  •  I am fortunate I do have a lot of support. All of my closest friends always ask me how I am doing and then really don’t mind listening to me. Thanks Debbie, Sherie, Dena and Ellen for listening to me vent! Most of all Dave, my soft place to fall, thank you for believing in me and understanding when I am having a bad day or week or month. You are the best!!
  • My sweet husband and very understanding Dr. Schoborg. They have never stopped understanding and caring and have helped me through the worst of times. I love my hubby so much and also without Dr. Schoborg I would probably be either dead or a real mess.
  • My mother has been very supportive, she even cooks ic diet meals for Sunday dinners. My father and brother helped me do all my yard work when I was barely able to walk. Some of my coworkers have been extremely helpful on my worst days, although my boss says “haven’t they fixed you yet?” And I guess I should thank God, because this last year has been quite a learning experience for me. It seems as if God knows exactly how much I can take. For those who say they have no one to support them I am sorry. I know your pain, and how isolated this disease can make you feel. I find the IC Network to be very helpful when I am full of questions. I would love to get a support group going in Indianapolis. We have to stick together!
  • Thank u God for getting me through when i thought i couldnt handle the ic or pain.My husband has been my
    rock through ic he takes me to my doctor appointments and even holds my hand in the room if i have pain during a procedure thank u sweetie! Thanks to the pelvic pain regional regional office Louisville, Ky including dr mcquady who has been there for me during the 10 years i have dealt with ic. They are very compasionate about everthing they do. Thank u to.my mom who has prayed for me and encouraged me when i was having a difficult day with.ic. thank u ic network where we can talk to others who have this awful ic.
  • And, second would be my children. They began cleaning the house for me because it caused me so much pain. They think I am obsessive with my cleaning, but they do it the way I like it because they know it will make me less anxious about not being able to do it myself. They sometimes cook dinner. They seem to ALWAYS understand. They are so attentive and ask me several times a day how I am doing. I am blessed beyond measure! Thank you Andee Savoy and Tj Savoy!
  • my husband, Jonathan, has been my rock. he truly honors the vow of “in sickness and in health…” i could not have made it this long without his support, both physically and emotionally. i know it takes a toll on him because my pain comes on so suddenly, and he has to adapt on a moment’s notice…sometimes 5 minutes before walking out the door to go somewhere, sometimes in the middle of the night. he often has to be “single dad” while working full-time from home, keeping up the cooking/laundry/dishes and taking care of me. he’s been so patient through the ups and down of my treatment(s), and he doesn’t make me feel guilty when i have to “invest” in a new treatment option that may or may not work. he’s been an advocate for me with my friends and family who may not always understand. he’s stood with me through many, many doctors visits. he’s listened to me cry, question, complain, feel sorry for myself…he’s an amazing person. also, my son, who is now 12 and has never known me without this condition, has always been so sweet when i have to be in bed for several days and be “taken care of” by he and my husband…their compassion for me is a huge comfort and helps alleviate some of the stress of this frustrating condition. i know i am very fortunate to have the support i do from he and my family and friends. i only hope that IC will become more understood in the general public and that we can find a cure soon!
  •  I would like to thank my Darling Clayton Jeremy Danvers. You take care of me 24/7 365 days a year. You gave up your career for me, and never get angry at me. You don’t mention the fact that I wear my pj’s all the time. You never complain when we have to cancel plans. You are my husband and my best friend. Without you my life would crumble. I just want to thank you for your support and love. I love you darling.
  •  I forgot to mention the second most important one, my sister Kelli! She has always believed me from day one, she is always there for me, I always feel 100% safe with her regarding anything I need to share on my heart, and I will love her more than she ever knows! ️ Genuine unconditional love, thank you Kelli.
  • My husband who I love dearly and my family. I love them all so much without their help I don’t know how I could get through it some days!
  •  My mom,husband&son
  •  My husband has been amazing as well as my parents, my daughter, my 2 best cousins/friends, my counselor, my team of doctors and my cat
  • Thank you to my mom, thank you to Andy, thank you to Ivor, thank you to Chrissie and to Helen and to Angia and to all the rest. They might not have understood completely but they took me to docs, bought me heating pads, etc. Now I am alone here and have to hire people. Just not the same. This disease cannot be handled alone.
  • My husband, kids, nurse Karen, Dr Hubbell, Melissa Brower,Dr Tilton, Dr Mc Sherry,Dr kahn, physical therapist Phyllis and Loraine. Dr Chesson, DrMunshi, christrup. The allemond family. The Babin family, the Stelly family my dogs Surie, Lily. Roberta, my friend Delores who passed. My total support Nancy hale and Ards family. BJ, and so many others.
  •  My husband ️ Thank you babe, love you always & forever!
  • My husband and mother.
  • My SO Rick. Always by my side!!!
  •  My grandma when I was first diagnosed in 2008 and my boyfriend now
  •  My husband. Hes stood beside me and taken care of me through this whole ordeal. I loves him very much and thankful I am lucky to have him.
  •  I feel very blessed to have such an awesome support system. First of all, my husband, he is awesome. He understands when I’m hurting he’s very patient kind and loving. When I’m cranky and nasty because I hurt he gives me my space and a hug when I need it. My mom and dad, they are both wonderful. They drive me to appointments and they always support me anyway they can. My daughters are great and there if I ever need them. I pray for all of you that have expressed that you do not have anyone my heart goes out to you
  •  I want to thank my daughter, Desiree for helping me with her younger siblings, for running my errands, for basically taking my role when I’m sick with flares. Desiree you are a blessing in my life and I do not know what I would do without you. My boyfriend Phil for helping me financially. They are my supporters and I am blessed to have them.
  • My husband, my husband, my husband. Clear? And a very good doc. who diagnosed right, all the rest have no idea and I’m too tired to explain. Last year I’ve send an e-mail with all the facts to my friends, the answer was ” go to The Mayo Clinic, they’ll know how to cure it. I’m writing from Buenos Aires, Argentina, we don’t have any support group, but we do have very good urologists.
  • My husband has been so understanding. And my cat, Tootboy, who sleeps with me every night and is so patient with my getting up and down all night. He just waits for me and goes back to sleep. I do have very supportive family, co-workers and friends as well. I’m grateful for all of them.
  • My fiance Chris Moore has been my biggest support

These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!