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

 

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!

The music that calms me down..

SEPTEMBER 21st

What is your bladders favorite playlist. Song titles and artist.

Below are the answers  I’ve received for IC Awareness Month daily topic # 20.

Sometimes to be honest I feel too sad and low to listen to anything except the dull sound of the TV in the background whilst I stare into space. I listen to less music since I got IC, probably because I am more sad and introverted than I ever used to be. 
But I usually feel better when I do listen to music. So here goes:

*The Scissor Sisters/ Basement Jaxx: good combination of f*** it / f*** you and energy-giving.
*Lamb: the most emotional music when I want to just cry and cry – especially ‘Gabriel’. Lost love, lost opportunities; past joy flown.
*Hole or Kelis or Faithless or even The Cure (haven’t tried this last one yet -from my teenage days) when I feel stormy or depressed
*conversely, to try to chill, anything by Nina Simone / Amy Winehouse / Nenah Cherry
*also any relaxing music I stumble upon on Jazz FM or Classic FM, chillout house or light drum&bass tracks to try to relax me into comfortable numbness.
*And last but not least, recently have discovered Grimes. When I am in debilitating pain and cannot get up to get the kids to school, sometimes I put on a couple of the best tracks on her album ‘Visions’. Track 5 often actually enables me to move and get dressed. This cool girl locked herself in a room for 3 weeks, aged 17, and just wrote music. What I wouldn’t give to be 17, healthy, and writing music in a private room. bliss. Her positive, curious, crazy energy seeps through to my pain-filled space and tends to give me a lift.

 Brian Brody- Caldedonia & Streets of New york. Mumford and Sons- timshel, The Avett Brothers- the weight of lies, Anthony Hamilton Official- Pass me over, Julie Roberts- break down here, Brett Dennen- Ain’t no reason. Laura Welch- Hollow Drum, Avett Brothers- Tear down the house, Zola Jesus- Skin, Foy Vance- Be the song. DMX- Slippin’… Tali

Come to Jesus” (Untitled hymn- author is Chris Rice) Because my bladder issues make me run to Jesus for His help! https://www.youtube.com/watch?v=PANiveIKVX0 “Sometimes the way is lonely, and steep and filled with pain, so if your sky is dark and pours the rain… Cry to Jesus, cry to Jesus, cry to Jesus, and live.”

 Soft Listening and Christian Music. Soothe the nerves.

 Need you now by Plumb

 Healer – Planet Shakers, because I know Jesus is the one who can heal me.

Anything Sarah McLaughlin

Before the Morning” by Josh Wilson

 Pink, Eminem, Rihanna, Wiz Kalifa, AND MORE!

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

How long did it take to get diagnosed?

SEPTEMBER 20TH

 What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of is to relive, it’s important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I’m sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they’re not alone.

Below are the answers  I’ve received for IC Awareness Month daily topic # 20.

I was seriously ill last autumn from September to November with Cryptosporidium and Gastritis. I was in hospital for a month and had severe stomach and bowel problems and was dangerously underweight. Then, just when I was turning a corner in my recovery mid-November and being able to eat, the bladder symptoms began. One night, out of nowhere, bad pain when I urinated. There was nothing on the ‘dipstick’ at the doctors surgery so they sent me away but the symptoms continued. For a couple of weeks I did nothing but the symptoms got steadily worse. Sure I had a UTI, I insisted they send a sample to the lab and sure enough it found some ‘Ecoli’. They started me on one antibiotic, which did nothing. Then another, and another. Then stronger ones – I remember Cephalexin, and Ciprofloxacin. All the tests by now were negative, negative, negative. I had a full sexual health screening. I became convinced it was some sexually transmitted bug they don’t test for, but which can give UTI symptoms, so I pushed to be tested for these too. By January I was getting desperate. I needed an answer. The STD doctor was very unsympathetic and thought it was all in my head – due to upset over breaking up with my partner! I was referred to a kidney specialist who knew little about IC, and thought I had ‘urethral syndrome’, but referred me on.

The consultant urologist I ended up with has been thorough, scientific and detached. We tried as much antibiotic therapy as we could, ruled out other causes, and at that point he said ‘ I need to have a look at your bladder’. This was March, and by April he’d found mast cells++ and chronic inflammation in the lining and detrusor muscle and diagnosed me with IC – something which prior to the rigid cystoscopy he’d thought ‘very unlikely’ as there was no blood in my urine. But there it was. Once he saw with his own eyes and had the biopsy results, that was that. As yet, we have found no way to help me other than painkillers. Am waiting to see if I will be able to take Elmiron – we’ve applied for it (not licensed in UK) and awaiting the answer. As yet the diagnosis has led to nothing positive and I still remain utterly confused as to the cause of my IC or the cure. In some way it was linked to my immune system being depleted and in some way to the bacteria that must have spread from my bowel – perhaps my bladder got inflamed and then has just stayed that way, unable to heal itself for some reason. That is my story. Don’t feel you are alone in this nightmare. And worry if diagnosis is taking a while; it’s not the end when they diagnose you, it’s the beginning.

 Luckily for my diagnosis about 6 months w/ my reg doc who realized after two negative cultures that something was wrong. Then I was sent to a wonderful urologist who knew it before he even did any tests but warned me that they would be painful:( I know that usual diagnosis take much longer unfortunately

 I was really lucky. i went to a walk-in clinic in Vancouver with a UTI that wouldn’t go away. After a few failed urine tests, and meeting with three dr’s, I walked away with an appt for a urologist, a recommendation to see a naturopath and a bottle full of Pyridium. The pyridium and naturopath got me through the next three months while I waited to get a diagnosis from the first urologist. He was horrible. Cancelled a few appts on me while i was in the waiting room, hadn’t heard of half of what i mentioned in relation to IC and told me to go home and do kegels. Thanks to the IC Network and a Vancouver support group I joined I found another urologist and asked my walk-in clinic to refer me to him. This dr is a specialist in IC and within two months I was in with him and on Elmiron. Elmiron has worked really well for me. Thing I learned though is you do need to fight, read everything you can and really push for your own health. You can’t trust the dr’s to do that.

 4 years of chronic UTIs, 3 different OBGYNs, urologist, neurologist, psychologist and gastro dr until I found an OB who diagnosed me with stage 4 endometriosis after begging him! I had 2 laparoscopies and after months still tons of pain. Finally found a Urogynocologist Who believed me right away! I had a cystoscopy along with now internal PT, aloe pills, diet change and weekly bladder installations. I’m on the right track, but how I miss coffee, a glass of wine, Italian, Mexican and Chinese food. I hope there’s a cure one day!

 Many years, 5, until the investigations starts. Laparoscopy, 3 cystoscopies, MRI, ultrasounds. Still not really ‘diagnosed’ with IC, but my particular condition doesn’t appear to have a name. Finally on good pain relief though, and permanent antibiotics.

About a year for me back in 2001-2002 chasing what I thought was a urinary tract infection but tests would all come up negative. I had started on the OB/GYN doctor end of things and was not getting anywhere, meanwhile running to pee like 85 or more times per day, laying in the tub because I could not get back to the bed before I had to go again. Finally I went to my urologist & he did a hydro on me and found the IC. He put me on Elmiron and ever since I have only been going potty 5 or 6 times a day. I have only had 3 hydros in all because they are soothing.

Best thing I ever did was decide never to see a doctor again about IC. They don’t help. They just make it worse. I just watch my diet (gluten free, dairy free) Read the Better Bladder Book.

I went off birth control after 15 years. I thought I had a bladder infection as I had pain in the front and my back and frequent trips to urinate. Put on antibiotics as I had blood in my urine. Cultures always had blood but no infection. I was lucky to have a friend as a Urologist. He did a bladder biopsy. Positive with Mast cells. Diagnosed with IC. I refused Elmiron as it causes birth defects. I wanted to have another child. I got pregnant and all symptoms went away. I lost the baby. All symptoms came back. I got pregnant again. All symptoms went away for 11 months. After that symptoms came back. Went back on birth control and all symptoms went away for years. Symptoms came back. I have found myself going in and out of remission for years. At one point I did the bladder installations weekly finding some relief after 5 or 6 times. I found a doctor who specializes in auto immune diseases. He suggested an antidepressant Cymbalta. After a month on it I found relief. The only draw back is it made me tired. I went down to the lowest dose of 30 mg a day. I hate taking meds. but it worked for me. After I start to feel somewhat normal I stop taking it until I have a flare up again. There is a type of pain receptor in these antidepressants. I hate the disease. I hate having to pee all the time and be in chronic pain when it flares up. I hope this helps someone.

1993-2004: suffered terribly with UTIs for first couple of years…had an old-school (uninformed) urologist who only made matters worse by two urethral tubal dilation/stretching procedures which caused extreme scar tissue. after a procedure to remove the scar tissue, i began to have “infections” but all my urinalysis would come back negative. i’d be in bed with terrible pain, bloody urine, & get a call from the nurse with “good news…no infection!” SO frustrating! i went through three more urologists trying to get answers…was told it was pretty much in my head…i was making it worse by “getting worked up about nothing.” finally, a doctor told me that it was possible to have symptoms without infection, but with no further explanation. that’s when i got online and found out about interstitial cystitis. i took print outs to yet another urologist, and he actually HEARD me! he did several tests; hydrodistension, cystoscopy, CT, bladder biopsy to rule out other ailments like to endometriosis, bladder cancer, etc. finally he gave me the “official diagnosis in 2004.” i was actually relieved when he told me because i had felt like no one understood my pain before that or that they thought i was crazy. immediately began amitryptaline and an exclusion diet. then we move, so i had to search for another urologist and happened upon a urogyno in dallas. she has been such a wealth of information, education and hope. she stays abreast of all the newest info…has even called several times after a seminar to tell me about a new treatment she wants me to try. have gone through several sessions of pelvic floor therapy and now have the home unit. i manage my symptoms most with the IC diet, but i’m also taking birth control to suppress mu periods because they make me flare BAD! my doc has been wonderful with my desire to go as natural as possible, so we are using supplements like aloe vera and marshmallow root to help rebuild the bladder lining (elmiron burned too much!). i use d-mannose instead of antibiotics when i actually do get a UTI. she offers me so much hope that we can tackle this. but, my biggest strength is from my husband and son…they are understanding (most times) and accommodate me when i’m flaring or having a UTI. i struggle with depression from all of this too, but i refuse to let this disease over take me and the happiness i have with my family. it’s still a daily battle to stay disciplined with my diet and taking my supplements. but i’m willing to do it to have some sense of normalcy in our lives and to function like a real wife and mom. good news: my bladder is finally healing…i’m better at managing stress and recognizing my body’s cues to slow down and stay ahead in the pain cycle. i turn 36 next week, I’ve had IC officially for nearly 10 yrs, and i’m hoping for the best year yet. staying connected in the iC community has been key for me to not feel isolated, alone, & as my son would say “mental.” i know there is no cure…yet. but, i am hopeful…

 I was in pain for two months before I found a doctor who would listen to me. Then I went though a lot of tests. My doctor diagnosed me and recommended the diet but I was still miserable. Then my dad helped me see a specialist in IC who didnt accept my insurance but this dr changed my life with one medication. I still get pain here and there but I am much better than I was. And I still follow the diet 100%

 i started to notice pain around 2006-2007. had a stupid gyno who didnt take my concerns seriously and would just have me try multiple kinds of birth control to solve all my symptoms. Oct. 2011 i see my 4th gyno, finally took me seriously and had me schedule with a urologist so when i was knocked out the gyno cut out endometriosis and urologist did hydrodistention and took pictures of my bladder turning completely blood red. i was diagnosed dec. 2011. didn’t really like that urologist so i been seeing a urogyno and she is very caring and helpful but i still get flare ups. i also suffer with adenomyosis and pelvic floor dysfunction.

 I started with IBS and chronic pelvic pain. I was too stubborn to go see a doctor but when I woke up one morning I had symptoms of a UTI. So I went to a family doctor who did a Urinalysis and gave me antibiotics. After the first round of Antibiotics I was still having the burning, pain, frequency and urgency. I went back to the family doctor and was put on Cipro for 3 days. If course that did not help either. On my third visit he told me that there is a bladder condition called IC and to see a Urologist. The first one I saw was not very knowledgable about IC and I decided to get a second opinion. The second urologist had his wife working in the same office as a gynecologist. I started seeing both of them and within 6 weekend I had a Cystoscopy and hydro distinction and an IC diagnosis. At the same time I was also diagnosed with IC’s evil twin, endometriosis. 4 years after my diagnosis I had a partial hysterectomy, at age, 37.

 4 yrs 6 specialists , 
About 4o er visits and countless antiboits 
And family Dr visits also 2 yrs stright of antiboits to treat a not there uti ? Go figure 
When I could finally find a uti to do a hydro I had a urge hunners Ulsar that he layered in the hydro sent me home with no dio 
And told me to take Advil for the pain !

 I remember having symptoms as early as age 5 or 6 (i had a ureter dialation at 6) and was diagnosed 10 years ago at age 19 after 14 doctors and just about every test known to man.

 Many different antibiotics despite negative urinalysis tests and urine cultures. This went on for about 6 months. I was told by a Urologist that it was probably just a viral bladder infection and it would take a long time to go away (what a crappy guess) without doing any type of tests or even reviewing my history of how long I suffered. I did research myself and diagnosed myself with IC. My diagnosis was confirmed by a urogynecologist who specializes in IC (the only one in my city).

It took about a year and a half of negative cultures, it all being in my head, and a certain amount of “this us what you get for having sex before your married” and one doctor insisting it was an std even though the only guy I’ve ever been with is clean. So it was only a short amount of time but it was hellish while it lasted.

 I was diagnosed within 7 months from my first symptoms. 2 cystoscopies, 1 abdominal MRI (that was the worst!), 2 ultrasounds, 3 cat scans, 1 nuclear radiation–and more urine samples than I can count. I even had my appendix and gall bladder removed! Was treated for UTIs UNTIL my OB/GYN sent me to a urologist she trusted. He was the 3rd urologist I saw! YOU HAVE TO BE AGGRESSIVE–don’t “wait and see”! If you don’t like one answer, find another doctor! Elmiron, a low-acid diet, and eating LOTS of fiber is helping me! Also, I’m on an antihistamine and Tramadol for pain. I can work, make plans–but my friends and family know I may have to cancel on a moments notice if I have a “flare”. (Why aren’t they called ATTACKS??) Being unreliable for others hurts worst than the pain…

My journey began in 1984 so no one had a clue what was wrong with me. I started with a family practitioner and not a nice one. As I’m on the table with a catheter I had to pee the pain was horrible I told the doctor and he argued with me. He’s like “You don’t have to go to the bathroom, your bladder is empty” And even though I was only 17 and very reserved by nature it hurt BSD enough I made him let me up and of course I peed – drip drip drip! Next I was off to a urologist who wasn’t sure what was wrong but concocted a hellish mixture that he instilled in my bladder and sent me home telling me to hold it in for at least an hour! I made it five minutes down the road pulled into a McDonald’s and let it out! The pain was excrutiating. So next off to the hospital for testing – dye in my kydnyes, bladder filled with water and made to pee in a garbage bag in front of a camera so they could see my bladder work – fun fun times. Diagnosis extremely small bladder normal to pee 10 times a day HELLO I’m peeing a 100 times not 10. I was done with doctors and tests but my Grandma took me to Oregon Health Science UNIVERSITY where they gave me Valium like meds to slow down my Spasmodic bladder Oh it slowed down alright I still had to pee but couldn’t my bladder muscles were drunk and wouldn’t function – talk about pure hell! Next stop a psychoanalysis because it was all in my head and then off to be hypnotized. At this point I was now 18 and totally gave up getting help. I suffered in silence for the next 20 years. Finally I had a new family doctor who had heard of IC and was pretty sure that’s what I had. So she started me on ambatriptolyne ( sp?) This helped my day time pain and let me sleep but after a few weeks my bladder became ten times worse. Because sleeping through the night wreaks havoc on my special bladder. If I go more than two hours tops at night without peeing I pay for it big time. Then came Elm iron which I took for about 8 months with absolutely no change so I stopped. I’ve tried a couple urologists since with no help other than to torture me and confirm the IC diagnosis and show me the lovely ulcers in my special bladder  One offered to stretch my bladder while telling me he’s only popped a couple – I opted out. So currently I am without a doctor or treatment sad to say  30 years in and I just live my life to the fullest possible and don’t hide my IC anymore!

 I had my first tinges of pain, blood in my urine and frequency of urination when I was about 8 or 9! Worse and worse as a teen and thus began 20 years of testing and no answers…only that it was all in my mind. Sigh, this was in the 60’s and 70’s. I was working, as a teacher, but it was getting harder and harder to hide the pain from the kids. Finally, when I was 34, a urologist diagnosed IC but then all Hell really began. The treatments were brutal, putting Cloropactin (spelling) in the bladder on numerous occasions and all why I was trying to hold down a job. It finally got to bad that I had to apply for disability. Being told for so many years that pain is all in your mind (besides urine full of blood) just seems ridiculous. I hope now that patients are more easily diagnosed. Take care and I hope you all find your answers and some kind of relief.

After multiple very painful “uti’s” and antibiotics I was sent to a urologist. Luckily she listened to everything I had to say, the trigger that sparked her to send me for a cystoscopy was that the OTC anagelesics provided relief & that cranberry or anything acidic made the symptoms worse. 
I’ve been living with this for 12 years, luckily I’ve got the symptoms & pain managed most days, I can avoid flares most of the time by using antacids & Cystex with my elmiron prescription.

 It was a nurse practitioner who diagnosed me, I was a my urologists office to schedule another surgery when we finally figured it out. Talk about seeing the light at the end of the tunnel.

 Two months of frantically searching the Internet to no avail while puzzled doctors kept testing me for UTIs and emptying my bladder. Saw a urologist who finally knew what was going on. Had the potassium sensitivity test that brought much relief, afterward of course, LOL. Had a hydro, followed the diet and took an allergy tab every night until I decided to get pregnant in 2007. Been off the allergy tab and the diet ever since. In remission most of the time but when I get flares I return to the diet, drink plenty of water and use Prelief. Also taking generic brand of Zyrtec every day but not as a direct result of the bladder

 I self diagnosed maybe 5 years before I was officially diagnosed by a Nurse practitioner in my new gyne office. My aunt has IC that is so bad she has been housebound for years and has a 2 T bladder capacity . She says she can never sleep more than an hour.i am currently doing well. Was on elm iron for about a year. Stopped taking it due to ins change. Now diet and homeopathic remedies.

Oh goodness, ct’s, ultrasounds, went to 9 doctors. Finally the second Ob/GYN said I think you have IC I’m refererring you to this great doctor that know a lot about it and I went to Dr. Bass in alexandria , Louisiana and then I have had probably 15 procedures, not counting the weekly DMSO’s, I have had 6 bladder distentions, 4 pudendal nerve blocks, several cysto’s , I am currently on neuron tin, diazepam suppositories , vesicare, celebrex, and urelle, and I am partly managed with some pain pills thrown in the mix. UGGHH I hate those two letters of the alphabet!!!!

 I went through a solid year of UTI’s and meds one after the other. I was in the dr office once a month. I have great doctors who worked together.

 I was really blessed. Went for two or three tests to see if I had a bladder infection. Started the treatment without getting the official diagnosis. For me this has been a two year journey with an amazing doctor and team

 12 years nearly 20 doctors and two threats of internment for imaginary pain … 4 cytoscopies, one colonoscopy, 2 ultrasound, MRI and one full of affected rectal and full of drugs and pyridium flomax ex … ELMIRON made the diagnosis and with elavil I was relieved I am the 98% Seignalet regime and I am followed by a clinic specializing in pelvic floored (pelvi santé ) (ostéopatbhie, physio.sexo, accu.) they made miracles especially the osteopathy only my  my libido and excitation n is not returned: (

I spent 30 plus years years trying to find out what was wrong. Thought it was all female problems and was very frustrated and in a lot of pain. Yes I spent many,many years looking for a Dr. that would take me serious. The Dr. I see now is a urogynocologist . I was seeing him for my female problems and went in one day with what I thought was a UTI and he handed me a pamphlet about Elmoron and IC and said I think You have this. I had never heard of IC before that. He went in the next week and checked and I have IC but I also had severe female problems and other urinary problems that go along with IC. My bladder still hurts all the time, especially when I pee because my urethra goes into spasms that spread up into my bladder. synthetic hormones after my hysto made it even worse. My body did not like them at all so becareful i’d hate for anyone to go through what I been through. If you feel that the Dr. is not taking you serious, DO NOT GIVE UP. Find one that will!

 a lot of pain a plethora of urine samples and antibiotics to no avail a misdiagnosis from one urologist and a finally a second very experienced urologist who understood what I was going through gave me a diagnosis and much needed help. Light at the end of the tunnel for me

 I guess I am lucky. My PCP knew what it was from the description of my symptoms on the first visit and he sent me to a urologist who agreed I had IC. However, all of the prescriptions I have tried either were intolerable or didn’t help so it is just getting worse.

from first symptoms to diagnosis = 7 months. I have not taken any prescription medication offered by the Urologist in Vancouver BC. I have managed all symptoms with the food elimination diet and Preleif works wonders when i want acidic foods. I test my urine PH and the all water i drink. City tap water is acidic! 5 in fact which is not good for IC’ers let alone any human. My symptoms went from 10 plus on the pain level to 1-2 on my elimination diet. I also avoid flammatory foods and increase alkaline foods. Citrus is actually alkaline in the body and i cant wait to get back to it! I believe i have started healing my bladder with diet  Good LUck!

 I was misdiagnosed for 15 years and diagnosed for 15 years. I was told it was in my head and to take a walk on the beach. I went to a new doctor and saw a sign on the wall that said “if you go to the bathroom more than 8 times a day, then tell the doctor.” I was are you kidding me, it was that simple. The doctors never asked me how many times a day I went to the bathroom. I thought 30 was normal, obviously I was wrong. I was finally sent to a urologist. She is the best. I am doing great now. I know how to control it and how to deal with it when it flares. I hope this information helps.

 It took 5 months to get diagnosed, but those months seemed like years due to the pain & frustration. Doctors – Primary care, urologist, Hospital ER, back to urologist, physical therapist, gynecologist, uro-gynecologist, then urologist again. That’s way too many doctors… too many appointments, too much money spent. You get the feeling that nobody gives a rats ass whether or not you get better, they just want you to shut up and go away. When I walked in the door, I felt like I was being told, “I can’t help you, step to the next window”. That’s not right, in any way form, or fashion, yet that’s how it played out. Tests during this time – there really were none up until the urogynecologist. He suggested that I should have a cystoscopy done & referred me back to my urologist for that test. If it weren’t for him ordering the cystoscopy, I still wouldn’t be diagnosed.

 Those intervening years before diagnosis and seeing that idiot doctor, I was suicidal – didn’t want to live a life with IC, never having room for any other thoughts, just thoughts about pain and when I could get to the restroom. Nights were filled with pain and no sleep. It was a dark period in my life when I should have been most vibrant in my late 20’s and early 30’s. Feel those years were robbed from me. But now all is so much better – medications have truly helped me. I am so fortunate to live during a time when meds help and there are ways to connect with people who also have this condition.

I went to my urologist for two years of treatment for utis. I went to see an infectious disease who treated me with massive doves of antibiotics. The antibiotics wore the enamel off of my front teeth which I had to get capped. In the middle of all of these different treatments I had a colostomy and a reconnection for diverticulitis. We thought that this was the problem. No. My symptoms returned. The next Sept. I was operated on for an extremely large kidney stone. Again my symptoms did not go away. I tried using several natural meds from the health food store which gave me some relief. From that point on my symptoms continued to get worse. I read a very small article about the symptoms of IC. I had everyone of them. I asked the infectious disease doctor if IC could be what I had. He said that it was possible. I went back to my urologist and asked him. He said that IC was very rare and I probably didn’t have it. When he tried to cystoscope me all I did was spasm and cry with the pain. That is when I decided to go on line and research IC and the doctors who dealt with it. I found Dr. Moldwin, who worked out of Long Island Jewish Hospital, and was an expert in the field of IC. I was surprised that I got an appointment for he next week. Although the trip should have taken only a half hour people who live in Nj or NY know that getting across the GWB and the Cross Bronx Expressway, was never easy. It could take me from an hour to three hours to get to the Hospital, with no bathrooms along the way. As soon as Dr. Moldwin and his nurse examined me he knew it was IC. I was given my first instillation that day. I was so excited. I could pee with no pain. This wore off in about three hours but it was the best three hours that I had had in three years. I went weekly for installations for a year. Then we stretched it to two weeks and so on. I did have about five Hunners Ulcers which were painful. That was taken care of also. It has been thirteen years now, I still go for monthly instillations but I found a doctor closer to home who works with me now. Still on some meds, but no heavy duty pain killers. I have learned how to live with IC and can do almost everything. Have to watch my diet, red sauce is the worst along with Granny Smith Apples. But I am living an almost pain free life.

 Took 7 years for me and I had doctors who told me it was all in my head – actually a doctor who had treated IC patients in the past had lawsuits against him, so he knew what the symptoms were and told me it was all in my head. What a jerk! After that I questioned myself was there something really wrong. My symptoms were intermittent – so I had periods of wellness but the flares were horrible. Finally went to another doctor but before going did research, came in with the diagnosis, and the doctor stated that I was right, that he had no doubts that it was IC

Took 3yrs for me to b diagnosed went through bout 3catscans,1mri,2ultrasounds,&4docs.I’m very blessed to have an awesome doc.who takes great care of me with my ic

 I was born with this. 25 years later my doctor mentioned IC to me. I have been seeing a Urologist since age 5. I never got any help and had no meds at all except infection pills that made everything worse. I still havent got very far with testing now because i prayed for a healing and im almost completely fine. Chocolate and soda is all that gives me problems! The best thing besides Prelief and AZO is a cold bath and icepacks for a flare. It helped me through alot of rough times. Im praying for all of you

 I feel I may have been a lucky person, I only had to wait 9 months before I was diagnosed, But I had a colonoscopy , trans vaginal ultrasound, C.A.T scan, millions it seems of urinalysis and pelvic exams, finally a OB/GYN who by symptoms alone knew what was wrong. All the thing she has tried though sadly haven’t worked to help with the pain. I’ll be seeing a urologist soon.

 it took 3 years to figure out what was wrong and many different drs. my pain wasnt taken seriously and blamed on womanly things. took four different exploritory surgeries, but i couldnt get the drs to take me seriously, they thought i was overreacting about the pain and all i wanted was help finding out what was going on. not once did i ask for any kind of pain med just help. but through many misdiagnosis they finally did a cystoscopy and laproscopy amd found it and did a baldder distention. which in turn didnt help. still have a hard time having drs understand what i feel and go through.

 7 years and 4 Drs and a few trips to the ER. My current Gyno finally figured it out. I went in for the procedure that fills your bladder to test how much it can hold. And it was absolutely the most painful experience of my life. I screamed for it to end and was extremely shaken up about it, so much so I couldn’t drive, the nurse kept saying it shouldn’t hurt at all, we’ve barely put any water in, its only sterile water. I was shaking so bad she had to stop. When I was allowed to relieve myself I had almost instant relief. So my Gyno figured it out.

 3 doctors, 8 years, numerous tests and surgery, and finally almost double kidney failure due to one of the quacks. Finally I found a wonderful doctor (in Pittsburgh) who immediately figured things out and helped me on my way to “living” with IC and making the best of each day. My best advise is to be your own advocate, if you do not agree with a doctors opinion or treatments fight to find someone who puts you first and helps you to understand.

I’ve had recurrent ‘UTI’s for at least 20 years. It was so discouraging when my urine tests came back negative for infection, yet I had stabbing pain when urinating, and always felt like I had to ‘go’, even when I didn’t. Finally, a friend who is a GYN NP-C gave me an open Rx for Macrobid, because that’s all that seemed to help. I’d take only as necessary, but I was concerned about all the antibiotics I was taking. I’d already noticed that caffeine aggravated the condition, so avoided it (or so I thought! Still drinking ‘caffeine-free’ diet Coke and decaf coffee), but still suffered with chronic UTI symptoms. During a weekend vacation in Feb., this same friend told me that she suspected I had IC. I’d never heard of it! I did some research, found the IC Network and watched all of Jill’s videos (which was SOOOOO helpful), changed my diet drastically, and can’t believe how NORMAL I feel now! What a blessing…..I still have no official diagnosis, but I see my PCP Monday for my quarterly A1C evaluation, so I’m going to ask for a referral to a urologist. Between my diabetes, Weight Watchers, and now my IC restrictions, the list of what I *can* eat is pretty small! And while I feel so much better, I still desperately miss carbonation, coffee and chocolate!! P.S. When I’m in a ‘flair’, I find that drinking two Alka Seltzer tablets help. I’m guessing they normalize the PH factor in my bladder…..?????

 

 

11 years, 4 doctors, countless tests & procedures & thousands of dollars in medications that didn’t help, 2 trips to E.R., and dissolution of my marriage in part due to IC. Finally found the right doc 4 years ago, and a year after that was getting some relief.

 

 

I went years! About 12 years ago I started hurting and just about 3 months ago I was diagnosed with IC. I’ve had 2 surgeries for endometriosis and I constantly have ovarian cysts. I thought this was ALL of my pain. At my last pre op I just casually mentioned to my gyno about my severe urgency and he did a cystscopy and found IC, hunners ulcers and my bladder only holds 300cc’s. Now I know why I never had relief, even when I was on birth control pills.

 

 

 

I went through 4 years of hell. Basically I was told I had a UTI every time I went to the doctor. I was constantly in pain to the point I was suicidal. I began to abuse pills and I almost lost my life (age 16). I even had a doctor poke a hole straight through my urethra while trying to insert a catheter cam. Eventually I made it to MUSC and the doctors there found out within a couple months what was wrong. Apparently I have a type of IC where the inside of my bladder attacks itself and scabs up. That was and is the cause of the high white blood cell count. I even got to see the inside of my bladder. It was terrifying but great to know what was wrong. I also have vulvar vestibulitis, which was compounding the pain. One doctor also believes I have endometriosis, but since current treatments are working fairly well I’m not going to invest any money into testing it (I haven’t had health insurance since I was 18. I’m 24 now…eventually I won’t be poor. Lol)

 

 

Over 10 years of non stop suffering, three surgeries and many many late nights at the er in massive pain.

 

 

Jan 2002, pain started. Thought it was a UTI, went to the gyno two or 3 times, tried Levaquin despite there being no infection in the urine. Finally, she thought it might be “something called Interstitial Cystitis” and referred me to a urologist. One visit with urologist and hydro scheduled for May 2, 2002, which is where I got my official diagnosis. Was on Elmiron for 5 years, had my son in 2007, and was virtually symptom-free for a year after he was born – no reason. Got off Elmiron, had mild symptoms for the next few years, and only since Sept 2012 have symptoms really flared again. Did a bunch of tests to see if it was something else as the pain seemed so different then when I first started with it, but it was the old IC acting differently. Back on Elmiron, I’m miserable. I am seriously considering Interstim.

 

 

 

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

 

Mirror, mirror on the wall…

SEPTEMBER 19TH

Your bladder crawls out of bed in the morning, makes its way to the bathroom to brush its teeth and relieve itself and catches a glimpse of itself in the mirror. What does it see?

Is it male or female…is it broken and bruised? Does it have scars yet is still beautiful? Tell me what it sees.

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Below are the answers  I’ve received for IC Awareness Month daily topic # 19.

My bladder is female. If she saw herself in the mirror she would be appalled. She is red, raw and covered with tiny pinprick cuts. She is hurting but any cream, any ointment will only make her feel more sore.

She is clutching the sink, struggling even to keep looking at herself as she is so horrified by what she sees. She is disgusted with herself. She used to be helpful, to have a purpose. She has now, over the past year, become a torturer, a sadist; she lives inside a 35 year old single mum with two small children and a life to lead and every day she hurts and torments her and makes her life almost unbearable.

But it is not her fault, not really. She only gives out pain because she is in pain herself. She only hurts because she is hurt.

What she wants, more than anything, is to get better. She just wants to be ‘normal’. But it’s been so long, she can barely remember what ‘normal’ is.

Mine sees an organ who has a hard time making friends and tries far too hard to fit in. It easily makes it awkward for its neighbors to associate and identify with it resulting in a serious lack of cooperation. My bladder is most definitely a woman who grew up way too soon. She longs to do whatever it takes to get past the mistakes of her past and heal…no matter the cost. She also knows that it’s not all about her. This pain comes from the other organs she surrounds herself with as well and until they can all learn how to work together there will always be turmoil. She sees strength. She sees dedication. She sees a challenge. I think she also sees that she’s a blonde with a big mouth and a penchant for stirring things up before wrapping up the self assessment mirror convo and going the hell back to bed…

I see mine that’s broken and a disappointment to her husband. She is a loner but tries to put on a smile even in pain. The once go getter that wasn’t afraid to have her plate full!

Mine sees a very pregnant woman with a severe uti. She has been in labor for years with the baby crowning. Lower back & dragging feeling in the legs. Heaviness with occasional stabbing, and/or electrical shocks. Thanks to the related diseases she also aches like she has the flu.

 It sees a female, broken bladder in severe pain that never wants to urinate again for fear of horrific vag. burning. (I’m up at 4am to prove this theory).

She looks into the mirror and she sees what used to be a beautiful soul. Someone who’s always tried to help others, always laughing and making others laugh. Someone who cared and put others first to now being hopeless, lonely, depressed, secluded and aged. She’s young, but feels like she’s in a body well over her actual age. She hurts constantly. She cries out in pain and questions “why me?’. There are times when she’s hopeful. Hoping for help, for relief, for a day when she feels like her old self again, but she lowers her head in pain and feels helpless instead.

 Mine is a beaten and battered woman. Her cuts are raw and every muscle bruised. She feels abused and her only temporary relief are Percocet that are rationed. She is ashamed of her image and prays for a man who understands.

 I Have always felt that my bladder was seperate from me. My bladder is evil and angry. My bladder screams and twists while wrecking everything in me. My bladder is a spoiled child and he will pitch a fit until he gets exactly what he wants.

my bladder sees a mother of 3 small children who becomes tired and is in chronic pain

 My bladder is a broken down female who’s been bullied around too much and self-inflicts pain. It prays for a cure, but it also knows that it has to accept that things aren’t going to be going very well, that pain will be a constant. Once it accepts that like it would a lost limb, it can move on.

 She’s a diva, used to being pampered and soothed. She’s content as long as she stays warm and relaxed and gets her happy pills every morning and night. But if something slips and her delicate balance is unsettled, she gives me a swift kick with her Manolo Blahnik. I’ve sacrificed a lot to keep her happy, but feel damn grateful I’ve been reasonably successful so far.

It is sore and worried about what the day will bring? Will there be clean or even a bathroom where I teach? Will I find someone to watch my class song can go? How will I get through the day like nothing is wrong again? It is weak and wants love and care. It feels misunderstood. My DOCTOR just suggested hydrodistention again AFTER me telling HIM that it isn’t recommended now by AUA. Why doesn’t HE know this???!!!

 My bladder is female. She looks sad. She has held all these feelings of being hurt and feels pissed off about it. I’m working at releasing the feelings of being hurt and pissed. It is but one step in my healing.

She” looks in the mirror to see a reflection of one that looks so tired and has aged 10 yrs in  the course of year and a half. She looks dull and lifeless. “She” is battered and scarred…

All it can see is a reflection of me. A reflection in the mirror of the woman on the bed crying in tears of pain for her 3 year old looks at her and says “is mommy sick again?” My bladder sees how it has at times broken down this woman to nothing but to nothing but pain and misery. My bladder is never content and wants just to be “cured.” It cannot even look at itself in the mirror, all it sees is the bad and the ugly. Why isn’t this woman treating me? Why am I in a body that cannot cure itself? My bladder would see ME a woman and a warrior that fights everyday of her life for a cure, a woman that get’s off that bed, and gives a children a kiss on the head and says “mommy will be alright, don’t you worry dear, mommy will be there soon.” Our bladders see US in the Mirror, no matter the battle wounds we are all IC Warriors, fighting for a cure!

My bladder is so hideously ugly and ripped in pieces that it breaks every mirror it sees. Mirror mirror on the wall, who is the bloodiest of them all? Gee, that is a kind of negative attitude, isn’t ‘it?

My bladder is female. It sees the pain she causes several times in the early hours of the morning. She is broken and does long to just feel normal again. She sees the pure misery she puts the young 30 yr old woman through each day on top of the living hell this woman goes through daily due to related illnesses and mental illnesses. She wishes she wasn’t the one thing that makes her life even harder on top of the wreckage of abusive relationships and loneliness. She thinks if only I could help her body function better to help her out. It wouldn’t be much but at least it would be something.

 Mine sees a much more relaxed and happy self since starting IVC ( a parsons cocktail!! ) treatment, less tired as it only wakes up twice in the night against 7-8times a year ago,I have a happy, happy, Miss Bladder now, long may it last.

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

Why yes, We’ll accept!

SEPTEMBER 18TH

 You’ve been asked to give an acceptance speech. What are you accepting? A team of doctors and medical professionals whoa re going to get your health back on track. Tell them how much it means to you to have them working towards a better healthier you.

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Below are the answers  I’ve received for IC Awareness Month daily topic # 18.

–To my old urologist thank you for finally referring me to an ic specialist. To the ic specialist thank you for listening and being one of the few uros that truly are up to date and knowledgable about ic. Thank you for not being condescending as I tell you of my ideas for treatment. Thank you for seeing how much pain I’m in. Thank you to my previous urologists’ pa who was more educated and up to date with ic than he was. Last but not least thank you to Jill and the ic-network and everyone who is apart of it. Without the IC network and its educational resources and support forum, I would be in a very dark place of no hope. Love, Kim

– I would say thank you for listening to me and not making me feel like this medical condition does not exist. To find a cure would be the ultimate miracle but until that happens things that do help are so costly so doctors try to advocate for more help with alternative methods that are beyond patients pockets. For example, I cannot afford pelvic floor therapy or homeopathic methods. Doctors please advocate so these things are part of protocol when someone suffers so badly from ic. It only makes the stress come on more when there is no help available due to the cost. Doctors please know that this condition is devastating the longer someone has to deal with it.

– I would say thank you for all of the hard work and effort to get me and all IC affected people into a better, physical shape. The doctors did not give us this issue. It’s their compassion and determination to relieve the suffering of others that gives us all hope.

 –My dream is to have pharma doing more research studies on this disease and looking for new treatments. If they were doing this I would hug them. As far as my current doctor…. He deserves a hug too. For believing in me and trying to have me lead the best life possible.

–I have and will continue to thank my doctor for the listening year as I was dealing with the emotions and fears after reading the Internet. I was thankful that she made the steps for me to do the treatment myself. She answered all and every question I had. Some days she just allowed me to cry. I am thankful for the team I have.

– This would the most succinct speech ever. ME: “I will not thank you, for this is no more than I and ALL ic sufferers deserve. It’s about damn time. Now let’s get busy!

– Just a simple Thank You for believing in me. Giving my daughters back their Mother and me my Life.

– I would not take up your time if it was just for me but the people who live with me deserve better. My husbands day starts at 5am and that is a good day for him. That is a day where he actually got some sleep and didn’t get awakened by me needing something in the middle of the night. You see this man goes to work and comes home from a grueling 10 to 12 hours of working and running the I T department of a VA hospital. And when he gets home he takes care of me. By the time he is able to sit down it is well into 10pm. I want more for him. He spent the last 30 years in the army, did a 16 month deployment overseas and deserves some down time. But because of my health issues he has not been able to breathe. The other reason I would like to be considered for a new or used bladder is so my grandchildren could know the real me. You see, I have 7 beautiful grandchildren and most of them have only known me as sick. This isn’t the legacy I want to leave them with. I try very hard to create memories that do not evolve around my IC but it is very hard. Please help me to give my grandchildren more to remember me by than as their always sick grandmother. I ask for a better bladder, it doesn’t have to be new just better than what I have. 

I am not trying to build a country or fight some awful atrocity against mankind I am fighting for a family that deserves a better wife, mother, grandmother, sister and daughter. 
Thank you for your consideration.

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

 

Why Nurse Ratchettpants and Doctor Douche-Canoe should be fed to the wolves.

SEPTEMBER 16TH

Most of the topics I have chosen have been to help us remind ourselves of the positive and not get completely lost in the pain. For this particular topic I want it to be as open and honest as possible. Say exactly how you feel and say it all.

Write an open letter to the doctor or medical professional that told you IC wasn’t real or that you should just live with it. Let him/her know what that caused emotionally for you. Talk about the effects something like that has on a chronic pain patient.

My only suggestion is to please leave names out of it or use something like Dear Doctor “doesn’t have a clue” or “Nurse Ratchet” as this is more for a healing purpose as it is for name calling. -

Why Hellooooooooooooooo Nurse Ratchet.  What? I couldn’t resist…

nurse-ratchett

Below are the answers  I’ve received for IC Awareness Month daily topic # 16.

Violated 

I listened to the new procedure I was about to engage in. Physical therapy for IC. This therapy was going to be different than anything I had ever done. I just didn’t know how different! The therapist went through the steps of my vitals, my history, having me bend down to touch my feet and checking my posture, this all being done while my husband was in the room. But then she asked him to leave so that she could complete the exam. I thought we were already pretty well done? What else was there to do. Up to this point I was feeling okay. Little did I know what the next part of the exam was going to behold. The therapist gave me a gown and stepped out, she asked me to remove my underwear. As I write this part of my experience I am crying. The therapist came into the room and asked me to lay on the table and rest one of my legs on her knee. She was sitting on the table with me. She asked me to to relax the other leg so that I was wide open for all to see. Not that there was anyone there but every picture and certificate on the wall, the chair, the stool, you name it was watching as she began to internally massage the inner walls of my vagina. I was so mortified. 

40 years earlier

I was 15, he was 17. He told me everything would be fine. I didn’t know what he was doing to me, he hurt me. He pushed my face down into his crouch and force me to suck on him. I just wanted to go home…I wanted my mom but I knew that this had changed everything. I went home and I took the longest bath, I couldn’t get clean enough. 

6 weeks later he showed me a book about babies and I found out I was pregnant. The nurse at my school helped me with a pregnancy test. I was just 15, I was afraid. My mother said I was trash and that I did this to her, I thought I did it to myself. 

Roe versus Wade had just been finalized. My mother & my father took me to this dingy brick building in Chicago early in the morning to be examined by a doctor. I was only 15 and very naive. I had never seen this type of doctor before, when I looked back mother was sitting there why wasn’t she coming with me, why was she letting me go with this strange man wearing a white coat? I was so scared!!!

When I went into the examining room the man told me to take all of my clothes off and lay on the table. He touched me, he put his fingers inside of me and ask me if it felt good. I was completely naked and couldn’t find anything to cover my self. He kept yelling at me to move my hands so he could see my body. He made me cry. He wanted to know if he made me feel as good as the boy did. He asked me if what he was doing felt as good as when I was F……g. I cried and told him I wanted to go home, I wanted my mother & daddy. Finally he told me to get dressed. He took me to the waiting room where my parents were. No one love me that day, everyone was mad at me. I didn’t even know what I had done. 

We left that building and went to an even dirtier building, the room was full of people, adults…a lot of woman. A card board number was hung on my neck with a piece of yarn and I was given this tiny little white pill that made my head kind of fuzzy. I waited for 6 or 7 hours before my number was called and by then the fuzziness was gone. The nurse told me to take off my pants and underwear. I looked across the room and saw what looked like a shop vac. There was blood all in the clear tubing. The nurse told me to hold her hand, she said this is going to hurt…that same man wearing the white coat walked in, I turned my head and looked at the blue wall and cried…

40 years later

I left that therapists office in tears, I was hysterical. I thought all of the past was behind me but it wasn’t! It was there all the time under the pages of my life!

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Dear Doctors, 
After numerous attempts at finding out what was wrong with my body. After three unnecessary surgeries, a exploratory laparoscopy, a partial hysterectomy, and a sling mesh. 
Radical amounts of visits to your office, medications and antibiotics. You finally decided to test me for IC. If only you were more knowledgable in the common, but very hidden disorder called IC, I would have suffered less. 

Now I am another one of your IC patients and you ARE in deed doing all your best to work with me on this one. I appreciate you’re doing your part. Although I suffered for two years prior to my diagnosis. I allowed that to be a thing of the past. I have accepted the fate that life has dealt me. But I would like for you to try harder. Just a little more. I suggest you test women for IC first before cutting into their bodies. The sooner you start in the plan of treatments the better. Although I have four wonderful children raging from the ages of 19 to 11. It was very spiritually painful to lose a part of my body that meant so much to me. Why can’t you be an advocate for me and the millions of IC patients and help us fight and try harder for fundings for this debilitating beast. More research and time into this disorder can prevent years if suffering and possibly even a cure someday. 

Spiritually I am grounded on The Most High God. But physically I come to you with trust that not only are you doing your job, but that you care. And that you will try and use your power of being a physician to the advantage of finding out more about iC. 

I see numerous specialists. Pain management. Psychiatrist. Urologist. But none compare to my time spend alone with God. And through my prayers I ask that he would work through these Physicians and scientists and find better treatment plans and finally a cure! 
Sincerely, ME.

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Dear Doctor,

I was incredulous when you told me my ic was psychosomatic, caused by one or more of 7 emotional traumas, which I have none of. Did I imagine blood and leukocyte esterase in my urine? Did I imagine pettechial hemorrhaging in my bladder wall? No I did not. But I sat there and meekly let u call me crazy. I left your office in tears and now I cannot trust u with my health and wellbeing. The feeling of futility and abandonment just adds to the pain and fear. I wouldn’t want to curse anyone with this problem, but I wish u could live just ONE WEEK like I live every day. It might open your mind to the possibility that you r wrong. Sincerely Amy

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Dear DR. Didn’t want to deal with IC patients so you just told me my bladder was just angry.

You should have your medical license revoked for wasting 8 months of my life when I could have been getting treatment.

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To All The Countless Dr,

I had to see more Doctors than I can count age 16 thru 23 to try and find out what was wrong with me. To the Dr that said there was nothing wrong and he would shoot himself with a shot gun if I came back. I’ll supply the gun. To the drs that said I was to young to have anything wrong. I only wish that was true. To the drs that said life could be worse, it’s just your bladder. Life could be worse but most days if it was worse I couldn’t take it. Life is a struggle every day. To the big shot dr that didn’t listen and ran all the tests to see why I got bladder infections. Thanks, I only had one infection before I saw you. And after seeing you I had the worse bladder infection, peed blood for days and this caused my pain to be 24/7 instead of only on bad days. To the Dr that I pleaded for a cystoscopy, to see if I had IC. And she said I was too young and didn’t want to have that. I left in tears because I just wanted answers. I finally found a Dr 7 years later that did a cystoscopy and of course I had a severe case IC with ulcers. Thank you to that DR for finally believing me and listening!! And thank you to my pain dr for understanding how debilitating and painful IC is! I hope and pray that all the Drs that didn’t believe me, have had some continuing education and understand about IC.

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Dear Dr. Extremely blunt,

I just want to say I’m sorry I haven’t been easier to work with and that I’ve been very rude at times. I came to you with a chip on my shoulder from years of terrible experiences. I’ve come to appreciate the way our personalities clash and grate. I think it gives us a very honest relationship. I dropped a very complicated medical history in your lap with no insurance. What did expect you to do? Thank you so much for trying. I know it’s hard for you to admit that you have no answers and its hard for me to pay your bills! Thank you for diagnosing me.  I have no more time to write. I have an appointment with Dr soawfulhe’sbeenunderhospitaldisiplineforthewayhetreatspatientsandnurses to get a stent removed. I can’t believe I left you for him. The kidney stone summer for hell is almost over and I’m coming back to you. If you’ll have me…

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Dear Pumpkin…

 In my early 20’s my GP sent me to the “best” urologist in our area. After several tests, he answer to me was “well pumpkin, if you can’t control your bladder at this age, what are you going to do when you are an old lady?”…..Gave me a script for Tofranil (back in the 80’s) & sent me on my way.

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Dear doctor old fashioned,

it saddens me that you were so close minded to the new research and treatments for ic. Every time I came to you with my ideas you shot them down with condescending remarks. You had no idea how badly I wanted a new urologist but your group was the only one in town. I was told by your secretary that if I requested a referral to another urologist in your group that it would take months and you may end up denying my request. I was too afraid of the pain I was in too risk it. I knew now from the research that I did NOT want to try DMSO treatments you thought I was ridiculous. I saw your pa in the midst of a flare and she prescribed hydroxyzine and I finally got some sleep. The elmiron did not work and I was forced to see you again. You finally out right admitted to me that this was all too much for you. You were “just a plumber” you said. I asked for a refill for my hydroxyzine, you said to go to my regular doctor for sleep medications. You finally referred me to a knowledgable doctor 2 hours away. Very sad that I had to drive from one big city to another just to find a urologist that is educated in ic. I hope I never have too see you and that you receive the ic pamphlet of information I plan to give to your secretary. Sincerely, your long gone patient.

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To my old urologist.

I know that you really believed that IC was a rare disease. As you know know it isn’t. I realized that you started to believe when you called me to get Dr. Moldwin’s name and address so you could refer one of your patients.

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 Dear Doctor,

we certainly got off to a rocky start. My gynecologist thought my symptoms fit IC (bless her) and referred me to you. I mad the appointment with another doctor in your group so was a little upset that I had to see you. You listened to my complaint and ordered tests to rule out other causes. When you agreed that it was IC. Your next words were like a slap in the face. No one likes to work with IC pts. So they always put them on me! I was hurt and angry…I have an HMO and knew you were my only choice and I had hoped that we would become partners in this journey.
When I told you that I often would bleed when I was in great pain and asked if I could have hunner ulcers. You said that is so rare. I do have Hunners as the test showed. You don’t believe in giving pain medicines, after two years of crying in your office you ordered Tramadol. We are slowly creating a treatment plan that I hope will result in living the life that I want. But please hurry, some days I am only hanging on my a thread!

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

 

Daily topics for the final days of IC awareness month 2013

And now ladies and gentlemen, I present to you again….The daily topics for the final days of Interstitial Cystitis Awareness Month.

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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.

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.

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?

  • 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…

September 25th-  For those of you who have had great experiences with your doctors, healthcare, physical therapists, acupuncturists…treatment providers in general. Please share who they are, where they’re located, and how they helped you. So many people can’t find good health care providers in their areas and end up giving up. Maybe some of our lists can help those out who really need some good quality care!

  • Dr. Robert Echenberg- PA. Womens sexual and pelvic pain specialist. This man saved my life. He’s a genius and is responsible for many successful treatment plans for ICers. http://www.instituteforwomeninpain.com/
  • Juliette Aiyana acupuncturist and herbalist- NYC. She’s my go to for acupuncture and natural herbs in the city. And..she has plenty of experience with IC and chronic pelvic pain.     http://www.amazinghealing.com/

    Deb Smith- Acupuncturist, Herbalist, NAET practioner- PA. Deb was my first acupuncture experience and one of my favorite people in the world!  Her NAET treatments helped tremendously and she formulated acu points specific to IC and CPP. I do believe that many years ago when I was getting off all the meds and trying to learn to manage my IC naturally and non chemically she was the one that got me there.   http://www.feelgoodacupuncturehome.com/index.htm

    Isa Herrera and Renew PT- NYC. By far the best physical therapy for and ICer there is…in my opinion anyway. I believe that everyone should own her book … Ending Female Pain. It is my bible. She does an intensive week long program for those not from NYC…it’s worth the money!!!    http://renewpt.com/

 

September 26th Write an informative article (proper research involved!) on what studies have shown about it.

  • if you don’t know where to start…Use google…do research!
  • Ex. There are a few different types of known IC. Hunners, Ketamine, and IC without the hunners. Elaborate.   There is a strong connection between pelvic injury and IC. Elaborate.

September 27thIf you had to dress you bladder up to make an impression for the general public…what would it wear?

  •  Mine would be- 5 1/2 high black stillettos, a super sexy low cut red dress, fishnets, and some uber shiny jewelry. Why? Because it’d attract attention of the uber fancy people who couldn’t fathom having a chonic illness. It’d enable me to get their attention, pull them in, and then command the room.

September 28th-   What procedures have you tried? What treatments?  What supplements? What’s worked for you and what hasn’t? Use this as a way to see if there’s anything else out there that you didn’t know about. You’d be surprised how many different things other ICers have tried that wasn’t common knowledge. Have an open mind! And no judging others by what they tried if you don’t agree.  Everyone does things that they think are best for them. It’s not up to us to ridicule them for it!

September 29th-  What do you think caused your IC? Did you always have it? Did it come along after an accident or an infection? When did it first present itself?

  • My IC kicked into overdrive after an uber bad UTI in 2003. I then managed to get it controlled a bit (never knowing it was IC) until I had 2 laparoscopys and my appendix removed. It continued to spiral downwards after that. I saw over 20 doctors trying to get a diagnosis and had numerous procedures. At the end of it all I think it was a combo of heavily competitive gymnastic training at a young age and pelvic floor damage. I also had vulvar nerve damage from some accidents as a child and that contributed as well. I know that all of the antibiotics I was on for most of my young life completely screwed the yeast situation in my body and until I managed to control that nothing that I did for my bladder or pelvic area would hold. I’ve learned that it’s a total body process. You can’t fix one thing without fixing the other things. It doesn’t work that way.

September 30th-  What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers.  What methods of awareness can you use to show the public this is real?

  • Just because September is our designated awareness month doesn’t mean that’s the only time we should be spreading the word.  It’s a life long process when you have an incurable condition and it’s up to us to make it known!

Those are your Final day’s of September daily topics!  You can take part in as few or as many as you like. Remember, don’t post your answers/responses until the day they’re actually due…September 7th topic on September 7th and so on…if you’d like your answers to be submitted anonymously email them to me directly at tali@icramblings.com and I’ll be sure to post them as such! I will be posting the topics day by day as well on the IC awareness month page, the IC-network, Facebook, and my page.You can post your responses on any of pages listed above or you can email them to me as you go. Whatever is easiest for you!

I explained the rules more in depth in an earlier  post for anyone who has just stumbled upon this project! Please feel free to refresh yourselves a bit and share with others so that everyone participating is on the same page!

Any questions, don’t hesitate to contact! I want this to be a creative and fun experience for all who have chosen to participate! 

Poetry & Pain

SEPTEMBER 15TH

Write a poem about pain.

Below are the answers  I’ve received for IC Awareness Month daily topic # 15.

Stuck

My knuckles are white as we sit in the traffic jam.
My children are in the back of the car, innocent lambs.
‘Give it to me!’ shouts one; ‘no I won’t, I had it first!’ the other replies.
‘Shut up!’ I yell. ‘Just shut up right now and let me drive’.

I am so loud and so sharp they both start to cry.
The car is silent now and my eyes are dry.
I stare ahead into the stream of stationery cars and wonder if I have time
To jump out, run behind a bush, or into a pub or a cafe,
To relieve this burning, this screaming inside of me.

Just then, the traffic moves. A few metres.
There is nothing I can do. If we are lucky, it will be fifteen minutes.
If not, it could be half an hour until we are home and I can reach the bathroom.

It feels as if someone has lit a fire just above my pelvis
And it is burning me slowly, painfully, cruelly
From the inside out.
I pop a couple of painkillers from the packet on the dashboard.
I swallow them quickly with some water and fix my eyes on the road.

‘Mummy!’ asks my little boy, wary now. ‘Why did you shout?’
‘We weren’t exactly naughty’, says my daughter, indignant. ‘We didn’t even mean it’.

I grip the wheel. The traffic is still again.
Do I tell the truth, water it down, or do I just lie?

‘I am not feeling great,’ I begin.
I can feel their disappointment, their resignation, their reluctant pity.
‘I’m really in some pain. It wasn’t your fault; I’m sorry I shouted so loud.’
‘It’s ok, Mummy,’ they both quickly say together.
I make promises of cuddes and bedtime stories and maybe dinner watching TV.

But when I look in my rear view mirror, I see what this disease does to my children.
My daughter has her hand on my son’s knee, silently comforting him.
He is sucking his thumb, which at 6 I constantly tell him not to do, but this time I say nothing.
She, meanwhile, is looking out of her window, her expression a rainbow of raw emotion.
They are not talking or arguing or giggling anymore.

‘You know I’ll be ok don’t you?’ I say, not wanting to have this conversation now.
‘I’m starting this new medicine soon, which might really help.’

‘You mean the one that makes your hair fall out?’ she replies, without expression.
My six year old’s eyes widen and he sucks harder.
You can hear the rythmic sound; suck, suck, suck.

We start to drive a bit faster.
The pain shifts to an urgency which is making me almost groan with desperation.
I have no choice; I look for somewhere to stop.
‘Where did you even hear that?’ I ask her briskly.
‘I overheard you on the phone.’
‘It doesn’t happen very often,’ I say, ‘and if it does, it usually grows back’,
‘I love your hair,’ says my son. ‘It’s the colour of the sun’.
I love my hair too. Now it’s me who is crying, silently, squinting to see ahead.

We turn off the main road, at last. There is a hedge.
There are a lot of cars passing but we’re long past the stage where any of us care.
I indicate and pull the car up on the verge.
I get out of my door, walk around to the passenger side.
I open both doors and squat down by the passenger seat,
I should be out of sight of the road and my children,
But if I’m not it really does not matter.

And now the worst: the hesitant bladder, at last free to relieve herself, will not shift.
I squat like this for one, two minutes. Feels like ten.
‘Mummy, how long is this going to take?’ asks one of them at last
I can’t even hear who it is.
‘We want to go home’.

‘Look after your brother’, I ask my daughter.
She must be able to hear the desperation in my voice.
‘We’ll read your special book together in bed later. But tell him a story now.’

She sighs, and thank God she obliges.
‘Once upon a time, there was a dragon.
He lived upon a lonely mountain, breathing rivers of fire
And he was very, very hungry.
This was because he was not a mean dragon, so he never ate anyone.
In fact, he wanted to make a friend…’
And off they go into their imaginary world.
They go there a lot, these days.

At last my bladder opens and there is a rush of relief.
Everything spills out and again I feel ok.
I shut the doors and get back into the car.
For ten minutes now, I will feel ‘normal’, like anybody else.
By the time I get home, I will need to rush to the bathroom again,
Though the pain will be less intense because of the medication.

I hear the end of the story.
‘The dragon and the bird were friends for many years.
Then the bird got poorly, and the dragon made him a nest.
He stayed with the dragon and did not fly south.
The dragon loved him and loved him and cooked him little treats
With the fire that he breathed.
And at last the bird got better.
Before he flew away he thanked the dragon.
It was your love that made me better.’

Before I start the car, I turn around to my children.
‘ I love you both so much, and I’m so proud of you,’ I say.
They smile. They’ve got through this today; the crisis is over.
Mum is smiling again, and we will keep on keeping on.

But we all wish it was different.
That I could spread my wings again and fly.
That I begin to heal
That we have our happy ending.

Rainbowgirl— http://www.strugglingtosurvive35.blogspot.com

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“I hope you feel better soon,”
says the stranger
who knows only
my name.

Yep.
Me too.

But I’ve been hoping that
for 3 years,
and no matter what I seem to do,
or how hard I try,
it just doesn’t happen.

Only in the briefest of moments
will the pain ebb away.
or in sleep, or fun and distraction.

Never when I must be serious,
go to work, accomplish
something….or (I’d settle for) anything.

Isn’t there a way to stop all this?
I keep thinking there’s got to be.

I remember what it feels like
to not be tied to this pain.
to not have to ask myself,
“Can I go out today, if it’s not necessary?
should I even bother?
will I have any energy? (any spoons left?)”

Questions abound,
and answers aren’t to be found.

So the next time someone (I barely know) tells me
that they aren’t well or need surgery or whatever
I’ll try to remember not to say,
“Hope you feel better soon.”

–Amanda Machonis

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Walking in the Night

Lord, today I need You
More than ever before
I feel as if my days are few
Will You open a new door?

I feel like I have nothing left
Constant pain and loss surround
I don’t feel that I can even rest
Until I’m heavenward bound

All I can see is today
I have no strength left in me
All I can do is hope and pray
I just want Your face to see

I want to know You are here
That I’m not alone
To know that to You I am dear
To know that hope is not gone

Today is full of sadness
And I can’t see Your light
I find I have less and less
I’m caught in a dark night

Promise me I’ll get through this
That there is a brighter time ahead
I don’t need endless bliss
I just need to know that I’m being led

Copyright 2013 April J. Hamilton

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My pain drives me insane.
I try to be my old self.
But it never goes away.
I yearn for the day
When I can say
My ic is gone today.
On the outside I am fine
I try not to whine
This beast is mine.
I live each day and always pray
To be me again.

Laura Stec Dubreuil

pain2

 I once was care free and IC came and started the flame.
The pain, the burn, the heating pads. The ice and not knowing what food to have.
You took away my womanly desires. Nothing could put out the fire.
I used to love a spicy fare. But what I wound up with was a flare
Where’s the next rest stop? Is there a restroom? Can I sit another hour?
IC is a horrid and painful disease. Can some find a cure quick please?

–Linda Limbach

behind-everything-beautiful-thing-there-is-pain-facebook-cover

 I’m not sure which is worse…the fear of what my future with IC will feel like or the pain and discomfort of my present life. Pain and discomfort that is multiplied by stress, bitterness and resentment. How to make those understand, that are not afflicted by this invisible disease? We have feelings, needs and desires but not the ease…please try to understand. This was not part of the plan.

–Susan Shearer Wren

Pain-Is-Inevitable

A Haiku about Interstitial Cystitis:

Pain Pain Pain Pain Pain
BURN BURN BURN BURN BURN BURN BURN
Pain Pain Pain Pain Pain

Caylee Ott

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 It’s a little past midnight and sleep is yet to claim me…
The agonizing pain, the discomfort overwhelming.
On week two of my flare ups and no relief in sight
No one seems to understand or even sympathize.
I’ll never will forget, the day that we first met.
I was simply planning Christmas with my family and friends.
You came so unexpected, so cruel and so demanding.
I lost some friends because of you and even lost my marriage.
Today I hold my head up high, and trust in God above.
That although you may have won a thing or two, my spirit not at all.

–Olga Gomez

Find-A-Place-Inside

 I had never even heard the term Intersistal Cystitis before I walked into your office and bared myself on your exam room table. You poked around a little and asked a couple questions and blam the rest of my life started to drip down the drain not even two weeks before I had a surgery to diagnose endometriosis. Oh and don’t forget about those stones rolling around in your kidneys wouldn’t want you too miss out on all the pain Pain for months sometimes you fond something that stops it for a day or two and then blam a little more rolls down the drain pain oh honey I am so sorry you are having pain here go to the store and buy alieve it will help you or advil…No I cannot prescribe you something stronger you will be okay. Oh and don’t forget your prescription of (classy drug that cost a whole lot of money) you can afford it right ? I mean I know you had to call into work and missed several days but you will be ok give it six months or so and youll be back on the ball dont worry about being able to function through the pain just walk around all day as straight as you can possibly can and smile even though tears are streaming up into your eyes Yes it will get better maybe even go away one day but I don’t know how that could possibly happen.

–Amber Seely

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 The Pp’s

Please pull over
Please avoid the bumps
Please not tonight
Please take me home
Please let me sleep
Please forgive me I have to go
Please understand its out of my control
Please oh please I need to find a potty.
Please don’t call me peepee girl… I’m 37
Please don’t tell me I have to miss another day with my family and friends!
Please please IC the pain now
And IC that I want it to go away forever!
Please PLEASE!

–Kerry Medina

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Chain Reaction

Should I sit or stand? Should I go or should I stay?

If I sit will the pain go away or will it get worse? Maybe if I sit this way or maybe that way???
Oh, and if I sit too long…”wow”, I don’t think I’ll sit…

I’ll just stand!

I wonder if standing causes more pain? I wonder if standing in line yesterday is what caused me to hurt more today? I wonder if I lean, would it be better than just standing? Maybe if I adjust my weight from one leg to the other it will be better.? But if I stood too long yesterday and that is why I hurt worse today then it wouldn’t be good to stand at all today…

Maybe I’ll ride?

But if I ride too long I will for sure hurt worse than I do today and today is bad enough. Last week I rode and couldn’t get out of bed. I wonder if I rode too long? Maybe if I ride I should stop more often? Maybe I should stop every 15 minutes, maybe I shouldn’t ride at all?

What if I wait…I could wait?

But, I wonder if tomorrow is worse than today? Maybe If I did go, didn’t wait and I sat down, stood on one foot then the other, rode for a short period of time laying down I would be okay.

What if when I stopped I had a bite to eat?

I wonder if they have an organic menu? I wonder if they use lots of spices? I wonder if they have hard seats or padded cushions?

Maybe I won’t eat, maybe I will just have water…

I wonder if they use tap water? If they don’t use tap water I wonder what brand of bottled water they carry? I wonder if they serve it with ice, or worse, “lemon”! If I did stop for just a few minutes and drank water I would have to wait to use the bathroom before I left…Ummm…I wonder if there is perfume in the brand of toilet paper they use? I wonder if it is soft like the stuff I buy? Maybe I shouldn’t drink water…

Okay! If I go and don’t wait…
I will sit some, I will stand, I will lean on the wall standing on one foot then the other, I will ride for 15 minutes laying down, stop, but will not eat, drink lukewarm water and carry my own brand of toilet paper.

Maybe I won’t go???

–Sherri Mills

poetry

 Going to be late,
I’m doing as much as I can,
It’s not good enough.

–Fallyn

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

Sweet sweet relief

SEPTEMBER 14TH

 Describe that exact moment when the pain lets up…even just a few notches…and you get to experience some sense of relief. Be super uber descriptive!

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Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 14.

  • The best experience I have of this is in water. In the bath; or recently in the ocean. The horrible gnawing burning desperate feeling just disappears and I feel like myself again. I need to become a mermaid maybe.  I also take a lot of painkillers. I was on Buphrenorphine and Fentanyl but wondered if they were contributing to hesitancy so switched back to oral painkillers. When I try to stop, or cut down, I am in such bad pain I can hardly move. I am curled up crying with the burning pain of it. This scares the hell out of me. At the moment, I’m using Tramadol and Dihydrocodeine and Diazepam for pain and muscle tightness. So sometimes, the pain gradually lets up this way. But there is no moment. Just a dulling of the intensity. The water is the best thing. I wish I could just swim and swim and keep on swimming and sometimes like tonight I just feel like giving up. This battle sometimes feels like one that we just cannot win. Why is this happening? Why does nobody understand? How the hell am I supposed to deal with it? Tonight I had to rush my daughter out of the bathroom so I could pee because it was suddenly excruciatingly painful. This pain disappeared with two Dihydrocodeine, two Valium, a hot water bottle on the sofa, some herbal tea and a hot bath. But I know it will be there in the morning. I want and need to be healed. I just want to know how.
  •  That’s the moment I JUMP into the shower, get dressed up, run errands, play with my grandkids, go out on a date night, have an awesome meal (with prelief, of course) and have great sex…because any day without pain, im grabbing by the balls and seizing the moment!!
  •  It’s like stepping into a whole new world. Sheer HAPPINESS! Storm clouds parting as the sun shines through. TREMENDOUS RELEIF! U forget how much u take normality for granted.

  •  I usually do so much, to make up for all the time I was down, that I over-do it, cram in as much as i can, and end up back in the same state again. I have a difficult time, pacing myself. I feel too young to not live life.
  •  It’s like being let out of prison. Like being snatched from the brink. I wonder if anyone else has the experience of fear that it will never stop.
  •  It’s like holding my breath and being able to let it go.

  • When my pain finally lets up I am usually in another world busy trying to watch tv or something to take my mind off of it. I get up and realize it has passed and it feels like the light just turned green and I need to go get shit done. On your mark, get set, GO!!! Then when I’m done I lay on my heating pad and quietly scold myself for over doing it while at the same time admiring my clean kitchen and crumbless floor.
  •  My kids hug me a lot more when my bladder is in a ‘quiet’ state. They want to enjoy me smiling while it lasts. This is usually right after a bladder instillation. Thank you Lord for specialists who care and installations that soothe.

  • One word-heaven when the pain let’s up even for a little while…

  •  It always takes me by surprise and I have to stop and really feel it. I’m like OMG I don’t feel like I have to pee and I just cherish the moment as it never lasts for more than 10 or 15 minutes but its like heaven!!!

  •  Sometimes when i wake up, i don’t have that “bladder awareness” and that is a wonderful sensation!

  •  When it is gone, it is like a breath of fresh air

    Euphoria!

  • It feels like my old self again I feel normal for a little while

  • It’s equivalent to that blissful feeling you get the first 3 seconds after you sit down in a hot Jacuzzi bath.

  •  When the pain and discomfort lets up I feel like I have my life back for a little while and when I can do a yoga class it’s a good day and while it lasts I think “I better make the most of it”
  •  During huge events! Sitting on stage during my graduation. Then reminding myself I could do this and try to relax my breathing and thoughtS. Taking control has improved my symptoms

  • It’s like… the weight of 1,000 bricks of lead have suddenly turned into a mist of atoms rushing up and away off of my body! There is no greater feeling in the world than relief… sweet, sweet, silky smooth, melting relief… like my body just wants to turn into a delicious creamy texture and melt into the happiness that is all that encompasses the word “relief.”

  •  When I finally get to sleep. Instillations, pill after pill, heating pads and ice pack bring very little relief. However, when my body stops fighting sleep and I’m finally able to close my eyes I find relief. it’s nice to dream about life without IC and PFD.

  • I feel like I’m floating on a cloud, and nothings hurts anymore. (just a little while)

  • l I know also almost the exact moment and I start feeling human again.

  • I pray it lasts and tread carefully most days because when I go crazy with enjoyment – the pain comes back.
  • When that day comes I grab it with both hands and enjoy every god damn second of it, spend quality time with my 3 beautiful nieces. The feeling is like walking on air, the relief is amazing. Xx keep positive everyone
  •  I  usually react with a big yes!! This is great. I forget sometimes how blessed I really am.

 

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

 

Ever had a UTI or gotten lemon juice in a cut? That’s what an IC bladder feels like every time one of us has to pee. Terrifying ain’t it?

SEPTEMBER 13TH

What would you say to a close friend or family member to try to get them to understand more about your IC struggle. Don’t use anything you’ve ever used before. Try a completely confident approach and something that people not of our “IC world” can relate to and think outside of the box.

This is mine- I continuously ask people if they’ve ever gotten lemon, tomato, or other acidic content in a cut on their finger…or maybe a hang nail. Most people in this world will say that they have and then cringe just a bit. I tell them that is what a horrible flare can feel like for us every time we try to urinate. It usually hits a chord and they don’t dare to challenge.

Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 13.

  • Imagine someone shaved, with a knife, the first layer of your tongue off. Before it can heal you have to fill your mouth with orange juice and hold it. You can’t spit the orange juice out or swallow it for at least an hour because you are in a meeting at work and can’t leave to go to the restroom. Once you are able to spit out the OJ, your tongue is bleeding, aching, and sore. Now fill it back up with juice and hold. Imagine doing this all day every day while trying to focus, communicate clearly, or sleep through the night. It is the definition of rubbing salt (or in this case acid) into a wound.
  • IC Is Similar To 100% Alcohol On A Really Deep Painful Cut, Except That Initial Sting/Burn Never Really Stops. 
  •  I think I should finally just ask one certain skeptical male family member (not my husband) to envision his penis getting a skewer stick shoved up into it and twisted. I also have fibromyalgia which I’m sure he thinks is fake too so for that I would just have someone beat the crap out of him one day and then stand over him and say “that’s what I live with!”
  • Interstitial Cystitis …when I explain this to my family and friends I tell them it feels like there severe open cuts deep inside my bladder capacity , feeling as if there is constant alcohol being poured over them, causing them to burn burn burn and it’s constant, along with deep pain and pressure within, which brings me to a crippling state and leaves me bedridden until relief.
  •  It’s like having sensitive teeth. The nerves are exposed so that certain foods hurt the teeth. The lining of my bladder has nerves exposed so that certain foods broken down in my urine hurts. Since the bladder is close to so many other body parts, muscle spasms and inflammation starting in my bladder causes similar problems to surrounding organs and muscle. That’s why a flare for me hurts down my legs and up to my chest.
  •  To woman I pose this question when asked: imagine the worst bladder infection, UTI, menstrual cramps and labor pains, all together, all at once, all them time. That usually gets their attention.
  •  Ive used all of the above but mostly the UTI or bladder infection… I still don’t think the pain is comparable. Like the quote says “Chronic illness… You don’t get it until you GET it.”
  •  Imagine peeing battery acid. That usually gets an OMG look. I think for the most part people are so wrapped up in themselves that they won’t get it until they experience something like it. The reason I don’t talk about it much is that people in general really don’t want to know how you are feeling.
  • I just tell people my bladder lining is compromised and I can’t eat anything that you wouldn’t want to rub in an open wound. This is the easiest, least gruesome way I’ve found to explain. It’s what my boss responded to because he kept trying to understand what I can and can’t eat. He said he went home one night and he and his wife were looking at all the food and figuring out what I could have. He was surprised that there were so many healthy foods I still couldn’t eat.
  • I find that the best way to explain is while calm and smiling. People tend to turn away from outward displays of negativity, regardless of how justified. When someone can see the pain in my eyes while I calmly and politely explain, the response is much more compassionate. I’m not saying it’s right, but people just respond better.
  •  I’ve been trying a light approach, but I’m new at this. I explain that like an exotic car, my human machine takes a different kind of fuel to run at its’ optimum performance.
  • I have used the; pouring alcohol on an open wound one many times. I have used a freshly roasted marshmallow, I’ve used sizzling steak in a skillet, I’ve used A cartoon character’s thumb when it gets caught on a door and it swells up, red & throbbing…..the list goes on. But people still DON’T understand. Unless you are an IC victim, explaining it to people seems pointless @ times. I sometimes wish I can switch places for a day with my coworkers who constantly roll their eyes every time I have to excuse myself to use the bathroom etc.
  •  I have talked w my family about my IC, I have found that if it doesn’t affect them they don’t care and even forget that I have a medical problem. Xmas was the best, going to family’s to celebrate, couldn’t eat one thing that everyone made, my husband took me out to dinner, and was asked why didn’t I eat anything? But I guess it’s my problem not theirs.
  •  I think battery acid every time I pee is spot on. I usually tell women it’s like having a UTI 24/7. Men never ask.
  •  Once when I cried because the pain is too great, my baby brother 5 at the time wanted to know how it felt using his understanding of tummy pain…so I told him that it felt like there’s a whole lot of poo stuck in belly and it just keeps piling up. He hurriedly told my mom how bad my tummy must feel because he remembered “that one time” when he couldn’t poo and had to go to doctor for special medicine.  Of course this is not the best explanation of IC in general but it helped explain the pelvic pressure to my brother…now at 9 he wants to know why the doctors haven’t fixed my belly yet? Lol! He thinks they should’ve figured it out by now
  •  I ll try this approach in person! Instead of never mentioning my IC.. I ll come straight out n say HAVE YOU TRULY FORGOTTEN IM SICKIN PAIN AND LOVE YOU MORE N MORE EVERYDAY….SO WAKE THE ? UP!
  •  I carry a letter from my IC doc which explains my need for the restroom & some of the meds I carry. (Not that I’ve ever had to show it.). I guess it just makes me feel more confident in case I’m ever questioned by some nosey jerk.
  •  Think of Thousands of paper cuts then pour lemon juice all over them !!!
  •  imagine that your hand is full of paper cuts and you stick it in jalapeno juice and that pain happens over and over
  • I explain it like this to another person: “Your eye has an eyelid to protect the sensitive eyeball, right? If someone was to spray pure rubbing alcohol in your eye with the lid CLOSED, your eyeball wouldnt burn. BUT if someone were to spray your eyeball with it, and your eyelid was not there or wouldnt work right and close properly, your eye would burn very, very badly.” I then tell them that their protective bladder lining works to protect the sensitive nerves in the bladder just like an eyelid does to their eye. I then proceed to tell them that my bladder lining is not there in places and it is very painful for me. I tell people in a very strong and confident way. If I do get anyone who seems to just be insensitive, I will just comment that my medical condition must be beyond their scope of understanding and ask if they have any questions about it. I have also found that sometimes if I am at a restaurant and say “I have Interstitial Cystitis, and I can not have that” sometimes people will just agree and try to accomodate and pretend that they know what I am talking about lol. I have also said to people “Your bladder lining looks nice and healthy pink. Mine looks like raw, red, bloody ground beef”. Sometimes that will sometimes at least give people a visual.
  •  When my female friends ask what IC is, I ask if they’ve ever had a UTI. If they say yes I reply,”times that by 50 and you know what Interstitial Cystitis feels like.”
  • I would ask them to image the worse muscle cramp they have ever has and at the same time they must cross a never ending bed of hot coals…..and those are the good days!
  • My biggest issues are with the spasms so I generally tell people it’s kind of like getting hit in the privates with a taser! It often goes down my legs and into my lower back as well
  • And to second a few others here, asking your nearest and dearest to accompany you to doctors and medical procedures for IC as well as giving them books is one of the best ways to convince someone this is not in your head and you’re not causing it somehow yourself!!!
  • Most recently I have been telling my friends to imagine having someone holding a blow torch to your bladder while stabbing it with an ice pick and beating it with a sledge hammer. Not a pretty picture but it makes them think a little. But truly there is no way to make people understand unless they literally experience the pain for themselves!
  •  Needing to pee hurts. It stresses out the pelvic floor muscles and makes it difficult to pee. Please be patient and courteous about me needing to pee frequently or taking a silly long time in the bathroom. It’s already embarrassing enough.
  •  I feel like my bladder is filled with acid and the pain get so bad I start to shake and get nauseous because I try to hold it in. People at work notice every time I have go to the restroom. It’s outside our building and I have to walk by everyone’s office to go. People question what’s wrong and you okay you don’t look good… go home. I say its just my angry bladder acting up again. If I went home every time I had a flare up I would lose my job. 
  • My doctor says not only do I have the worst case of ic he’s ever seen but my bladder is half the size of the average human bladder, with a cyst that takes up half that space plus lots of bleed ulcers. People think it strange because I have a picture of my cystoscopy in my phone. It help me explain my IC when they see the bleeding ulcers and cyst clearly in the pictures. Even with that I think it’s hard for people to understand unless they’ve experienced it themselves.
  • To women I know, I’ve explained that IC feels like a UTI/bladder infection. (Most all women have gotten one in their life by now and can relate). To the guys I know that have asked, I’ve told them that IC feels like when you’ve “broken the seal” after a drinking but it happens without alcohol. It’s that annoying urgency and frequency.
  • Like my bladder is one big bleeding laceration that someone is pouring salt on and EVERY time I pee I pee Koolaide
  •  feeling like someone is squeezing on the urethra and clitoris area then they really cringe and change the subject!! 
  •  Next time you have an open wound, pour lemon juice on it. That’s how I feel everyday!!!!

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

If I Could Have Any Superpower, I would be able to…

SEPTEMBER 12TH

  If you could have any super power that could assist with IC  in a personal sense or a community sense, what would it be?

I would be able to master the art of sleepwalking. This would enable me to sleepwalk my ass to the bathroom and pee so that my sleep cycle or bladder function weren’t disrupted. Ever.

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Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 12.

  •  Create vehicles that run off of urine and my professional peeing abilities would keep everyone on the road
  •  cure it and make the world stop thinking i were a hypochondriac
  •  I would make my body rid itself of it all together.. hello!!
  •  Make doctors KNOW how painful it is so they would actually treat the pain!- long term- and KNOW we are NOT after pain meds, we are only wanting relief from daily agonizing pain.
     I would have the power to see into any food and determine its origin and components. That includes its acidity level and nutritional content.
  •  For others to understand and see- although I LOOK “normal” and not sick, I am. Just bc you can’t see the pain, it’s there.
  • The ability to trade places with my husband just for a day, so he can see how it feels.
  •  The power to make all foods bladder friendly!
  •  I would like to be able to mind meld with people so they could feel what I was feeling. If only for a brief moment. Of course I would have also liked to have that ability during labor when my hubby said…”Oh cmon it can’t hurt that much”.
  •  I would want a magical pain reliever that actually took all of the horrific pain away including the pain with the diseases related to my IC like my fibromyalgia and ovarian cysts and stomach pain instead of taking an opiate day and night that doesn’t ever really work that well just so my body won’t get sick from withdrawal. ….
  • I would also want my family and loved ones to truly see and understand how sick I am and my pain instead of my illnesses being invisible disabilities I would want them to see and have compassion like they did with my brother having leukemia. 
    I would want doctors to be an advocate for me and not give up on research for me and to find the best treatment possible so I could live a full functioning life a 30 year old mother and wife deserves so I wouldn’t have to live fully disabled and I could get back to my nursing career and have hope in fighting to get my children back with a paycheck I deserve instead of disability and not even being able to treat all my illnesses properly because medicaid only covers 6 prescriptions a month in Oklahoma. I wouldn’t want to have lost money and benefits just because I thought I deserved some kind of family by marrying my husband who is also on SSI because his health prevents him from a career and he is the most amazing husband who loves me supports me through all this and takes such good care of me. But we needed to be eachothers next of kin because of our health and our marriage and love was more important than losing $500 income a month. We struggle and fight but our undying faith and love gets us through anything. We are all eachother has.
    To have the power to cure and destroy IC from the world.
  •  I would pass my IC to my close family and friends just for a couple of days so they could truly understand what I feel and the impact it has on my life. There are no words to properly describe the pain , you have to experience it!
  •  I think being able to cure it would be my first choice. A tie for second would be pain relief and temporarily letting others walk in my shoes to see what it’s really like.
  • The ability to transfer my pain to family, friends, and those individuals who are ignorant to this disease because “I don’t look like there’s anything wrong with me”, so that finally those of us with with IC can receive the understanding and compassion that we deserve.
  • I would wish it didn’t exist. Or, I would have doctors/treatment close to every person who needed it and make the insurance/ cost available so it was beneficial.
  • Making every business and restaurant open their bathroom doors to me without me having to ask and without the possibility of “oh we’re sorry there is no costumer bathroom.” OR giving me a radar sense of where the nearest available bathroom is at all times.
  •  Pass IC onto those who give us a hard time and don’t believe we are actually in pain…trading bladders momentarily would be such a relief haha
  •  Rid off pain at a moments notice
  •  To make it go away!!
  • Cheaper and better medicines to control pain …more research into why ??
  •  make it disappear from everyone and not exist in the world.
  •  I would be able to see the cause of IC and invent a cure for the millions who suffer. Proceeds would go to charity.
  •  Duh…power to heal!!!
  •  I wish I had a superpower that could diagnose someone when they first get IC, avoiding all the years of being misdiagnosed or untreated. I would love to help people understand their pain and symptoms from the beginning.
  • Cure!
  • I would make people feel empathy towards us that they can never forget- the kind that haunts you, especially friends and family who don’t take our sickness seriously or forget that we have a debilitating health condition.
  • a staples button that stopped pain and allowed normal function and productivity to return to my life cycle.
  •  I’d make it so that anyone who belittles IC or dismisses it as a ‘chick’ thing would feel the worst IC has to offer for a month.
  •  To find a cure for everyone!
  •  If I could wave a magic wand and get a normal bladder that would be my first choice. For my second choice I would like to have the superpower to have nice clean bathrooms appear every 30 mins in front of me where ever I may be! There simply are not enough bathrooms on this earth for this condition!
  •  Omniscience.
  •  My superpower would make the pain stop…I have had a flare up for two weeks now!!!!!!
  • Teflon Bladder! Impervious to pain!
  • A way for people to see our pain and understand we aren’t just making it up.
  •  I would be able to turn anything into a toilet/cozzy bathroom, (this includes anyone who belittles the pain of IC! lol) so whenever and wherever I am, I CAN GO! So, I don’t have to drive around for a half hour trying to find a place that will allow me to use their bathroom, and not turn me down various times, and also that isn’t disgusting!! during those long distance drives.
  • Tossup between eradicating ic and convincing my pcp that HE is the neurotic one.

 

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

 

What people think of others who aren’t “healthy”…and what those who aren’t “healthy” think about all that.

SEPTEMBER 11TH

 Tell me about who people think you are now that you have Interstitial Cystitis. Then tell me about who you know you are and some things about yourself that you may be in denial about concerning your condition.

Example:  a synopsis of Tali- People thought I was a girl that wanted attention because my career wasn’t working how I had planned and because I was still single. I knew more than anything how much of a loyal, honest, and strong woman I was but was in denial about the fact that in my desperation to get people to believe me it could have come across to those who didn’t have any more knowledge than I did at the time that I was just generally desperate. I was in denial that my approach was all wrong.

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Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 11.

 

  • people think i was a fake telling me it’s all in my head. they would tell me it’s all just to get sympathy or attention from others. no matter how hard i tried to educate others it didn’t ever make a difference. i was bullied & bash and still am by many people.
  • People think different things, and I have learnt to care less about what they think anyway. I think most acquaintances, close or distant, regard me with a mixture of awe, pity and curiosity. My true friends know how my life really is so mostly they think I am brave and strong. Some people think, or thought, that I made it all out to be worse than it is, as some kind of bid for attention or sympathy, or some kind of excuse for not getting my life together; though that is fading now as the months go on and the pain I’m in is obvious to people around me.  I think some people who know me well and know my history do connect my IC with anger. I was angry when I got ill, and I’m still angry. I’m even more outspoken now than I was before I got ill when something pisses me off, though contrarily I am also generally often more introverted and withdrawn. But when I want to say something, I say it. I hate complacency and I like to shake things up and that has only got stronger since I’ve been battling with IC. I’m sure some people don’t like that; but tough. I know that I am a huge mixture of contradictory impulses and character traits. I am kind, gentle, loving, caring, soft, intelligent, passionate, trusting, enthusiastic, spontaneous; I am also jealous, suspicious, depressive at times, fragile, pushy, hard, ‘in your face’, ‘full on’. Basically I’m very intense emotionally – I don’t really see this as a bad thing, especially if channelled in the right direction, but some people do, and certainly it can cause problems. I am often confused about what I want , but once I know, I am determined and focused. I do not give up if I want to persuade someone of something or if I want something badly. I keep on keeping on, which is what I am doing with Interstitial Cystitis. So I know that I am dealing with this illness in the best way I know how. I’m fighting the very best fight I can and giving it everything I’ve got with the remaining energy I have after caring for my two children, which sometimes isn’t very much. But I am putting my energy into trying every available treatment, orthodox, alternative, diet, supplements… you name it. I am trying my best – that much I know. I think I’m in denial about how scared I am. When I stop and think abou it, I am terrified. And I do not admit that to myself or to anybody else very often. It paralyses me – the fear. It stops me from fighting the daily fight. When I consider I may have to live with this illness for the rest of my life, it makes me desperate. And desperately angry.  Apparently anger is related to bladder disease. My acupuncturist said she has seen soooo many people with cystitis-related problems who were harboring great anger. I am livid with my ex partner for getting me into this whole thing,making me ill in the first place through his negligence, even though logically I know he did not intend to give me a chronic illness, but still. Anger is anger – it’s like holding a hot coal; I am burning, and my bladder is burning. I am not exactly in denial about this – I know it as a fact in my head – but I am not doing anything about it. I am just letting it fester. To really help myself get better, I need to face my fears and I need to deal with my fury. Somehow. Right now I cannot even think where to start. Right now I just tread water, just get through the hour, just get through the day. This too shall pass .

 

  •  I think that most people think that I’m totally together, organized and professional. They would be surprised to find out that due to my many other medical conditions, I never really know how I’m going to feel.. thus it’s hard to commit to normal business and family events. IC sucks! IC, IBS, etc. really SUCK. I’m probably most in denial about my anxiety.. it’s always a work in progress. While I don’t have panic attacks anymore, I do struggle with anxiety fairly frequently
  • Being at the young age of 22, most people, even family members, view me as “lazy” and someone who “doesn’t want to work” and would rather “waste my life away on the couch.” If those people could only step into my shoes for even a day they would understand how extremely frustrating and painful having IC truly is. My so-called friends dismiss that I have anything wrong with me and have inevitably stopped contacting me because I can’t go out and have a good time every weekend. I’m still struggling with being something more than just ‘a person with IC,’ but it’s difficult when most people can’t seem to understand. Deep down I believe IC showed my how truly strong of a woman I am.
  • People think I don’t want to work and would like to “sit on the couch all day in sweats”. Well taking care of two kids and a house does not make sitting around an option. I miss working. I miss having people to talk to as ive become completely isolated for the most part. My husband is wonderful and supportive so I am thankful for him. Past the denial phase have moved into complete and utter anger and despair. Diagnosed a little over a month ago, been in constant pain since may and have yet to find a doctor that will listen to me and back me on a disability claim or prescribe some kind of meds that will relieve my pain.
  • No one wants to talk about “plumbing” issues. People tell me that I’ll get a lot of food back once I feel better. Does that make them feel better? Still just trying to figure out how to deal with it all.
  •  I was diagnosed a year and a half ago, but been suffering for three. I am now beginning to accept this beast that have so brutally taken over my life. I have great support from my boyfriend and my children, but my “friends” drifted away. I still try to make it to work as much as I possibly can, but as a nurse it is a very physically demanding job and I go straight to bed when I get home, which leaves me little time to spend with my family. I have finally decided not to care what others think. I know that I am doing the best that I can and my coworkers negative comments do not affect me anymore. I will continue to fight the fight with diet, rest, prayers and faith. There’s really nothing I can do, but cope and accept the changes. Adapt and overcome.
  •  I was just diagnosed 3 weeks ago but have been struggling for some time before this. I have a very supportive medical team, family, and friends and they all think that I am pretty strong for being able to continue my master’s degree in Mental Health Counseling (almost done!!). And they are all in awe that I can stick to the elimination diet (the caffeine withdrawals were wicked and I still crave my coffee, Coke, and chocolate!). I am in denial about not being able to do certain things. Mowing the grass is calming for me and I enjoy doing it but the last two times has not been good for my bladder and caused flares. I am still learning to not only accept help from others but to also ask for it. It is really hard to do that some times! The good news is that in addition to specializing in grief, trauma, and crisis I would also like to counsel those with chronic and misunderstood diagnoses and symptoms.
  •  People think I’m faking or lazy. I just have IC. Denial would be that I haven’t changed or let it change me. But I have changed. A lot.
  • I feel that I deny my condition is permanent and incurable at times. I find it hard to accept how it affects every area of my life. My husband is a wonderful man and totally supportive and I have a close friend who was diagnosed over 20 years ago- she totally understands. Other than them it is difficult to convey to people what goes on – IC is often a lonely disease!
  •  I was blessed most of my family believed me. But I’ve always had health issues so they were already used to seeing me suffer. My mom has endured my health issues since I was born. I only had a few friends that I lost on my travel through this. Also jobs that didn’t understand till I had to have surgeries. I am blessed to have a great husband and support from my friends. I am not my health conditions. But they are part of who I am. I have learned to accept them and how they have made me a better person. I am more understanding, loving, long suffering and less judgmental of others. No one wants a chronic illness but we have to focus on the benefits not the negatives and mine have forced me to be more positive.
  •  Some think I’m lazy, aloof, and self absorbed.
  • I take everything to heart and have a hard time letting things roll off my back. I worry to much; what others think of me and what I think of myself. This causes me to retreat often, hoping to protect myself from being hurt further.
  • I’m in denial about how much my body can handle physically. I give it my all at work, just like I did before my IC, because that’s where I feel useful and I want to continue to prove it always.
  • That is a tough one as I am 47 and have had IC since I was 17. No one in my life including myself knows who I would have been without IC. I honestly cannot remember what a normal bladder felt like. I’ve never experienced life outside of childhood without the pain and without going pee 50 times a day. IC is who I am it defines every aspect of my life to a certain degree but I live the best life I can and most people don’t realize there is anything wrong with me. I do however often wonder who I could have been????? I don’t feel I am denial but sometimes I do become very angry and depressed and feel the urge to cut myself off at the waist -
  • People (including doctors here) thought I wasn’t physically sick. People always say “you don’t look sick.” I know I am sick and will always have this condition, and there is no denial at all for me, but I have learned to live with IC. I don’t let it define me.
  • They had me get a hysterectomy so that my uterus wasn’t putting pressure on my bladder because it was laying against it. Doctors take my IC seriously because they said I was diagnosed by a urologist group that specializes in IC. Unfortunately, you do get used to the pain and life will get better as in the beginning 12yrs ago I thought my life was over. But nope! I got this  and you’all will too! Stay as positive as possible! It does get better as you learn your triggers and what works for you!
  • My family knows who I am. As for friends, there are some who seem to ooze a silent disbelief as though I am making it up. Luckily, my true friends see me as a fighter because they understand that every day I struggle to be productive, to live some version of normal and to never give in completely to my illness. At the beginning I thought myself weak for allowing my illness to change the way I lived. Now, I understand that true strength is not pretending I am not ill. Instead it is persevering and finding another way to live that brings me join and allows me to be present for my God, my family and my friends.
  •  My ex husband divorced me as I was learning to live with IC. Most people don’t think there is anything wrong with me and just don’t get it. I did meet a amazing and wonderfully caring man and I am now happily re married…still learning to live with IC and I would say that maybe I’m in denial a little. I don’t talk about it much.
  •  People thought I was super woman the alpha female… That my pain was from an injury from thinking I was super woman lol I was blessed with an awesome obgyn who immediately knew it was my bladder and sent me to a urologist whom did the tests so I was diagnosed after only 2 mo’s of pain. My family just nags me if I’m eating or drinking something that is a known trigger. Adjusting to daily pain was the toughest but after 12yrs I’m used to it. I am blessed with an awesome support system!
  •  someone who just didn’t want to work! It makes me laugh. I would LOVE to have a normal bladder and urethra and go to work everyday.
  •  People think that I am a hypochondriac. I am a very independent person and I accept who and how I am. I am in denial about not caring what other people think. I say I don’t when sometimes I actually do. I know one thing for certain, I love myself and I come first. It took me a long time to get to where I am and I am not going to let anyone knock me down again.
  •  People think that i cant do anything, i cant work, i cant go to school, or live a normal life. people think ill never get promoted or finish school because of how much i have to miss from the pain. people think im depressed cuz all i do is sleep when i get the chance, they think im boring because i have limitations. I know that i am strong, i have been dealing with IC and endo and no matter how much the pain and how many surgeries i have, i never give up, i keep on fighting. i keep on getting out of bed and put a smile on my face. These two horrible conditions have showed me who really care about me in my life, alot of people still dont understand and think the pain isnt as bad as i say it is. i wish more ppl would understand, i wish my loved ones would get more educated in it and take care of me when im sick and in pain and cant move. I try to do the best i can even with all my limitations, but i might be in denial that some things are impossible to do with IC, sometimes i feel like there isnt ever going to be a guy that fully understands what im going thro and gives me the support i need and want. im in denial that this isnt what my life is going to be like, there has to be an end, there has to be a better life for me. I have to face facts that this is who i am now. im the girl with IC and pain so bad shes not the same girl she once was, and i need to accept that, and so do others.
  •  This diagnosis was a life changing. So at first they aw somebody who they thought had mental ssues but now they see somebody courageous , brave and strong. I am not sure if I am in denial with the condition, I think I have and still will challenge the limitation to see how far it foes.
  • I was diagnosed just over a yr ago. I’m sure I’ve had this now for several yrs tho. Tho none of my friends have told me I’m no fun, I can see it in their eyes…& lack of calls/texts. I used to run 5 miles, 3 days a week, i used to be the crazy one dancing anytime I heard music, I used to meet friends out for dinner and drinks to catch up…now…running is a joke…no ones calls me to meet up, when we are out all I can do is watch everyone. I can see my friends boredom with me and their annoyance with me mentioning anything about IC. I’m still at the point of denial alot of times and will eat/drink something I’m not supposed to & end up paying for it for weeks. I have lost the person I used to be, i dont know who i am anymore…I cry alot, I don’t hang out with people much anymore & i spend most of my days off on the couch. Pretty much I’m going thru the motions of life…I’ve learned to put a smile on in front of people and cry behind closed doors. I am in no way angry with God about this….I know everything happens for a reason….& I’m still waiting for that reason…til then…I’ll be sitting on the couch…watching everyone else live….
  • Having a positive attitude in the mist of excruciating pain & constant discomfort seems far fetched, but getting all worked up, depress, anxious ect about it only make matters worse. I’ve learned that having IC is beyond my control but how I perceive it and deal with it IS something i CAN control. I chose to cry, get angry, question God, feel sorry for myself, miss life before IC, imagine & hope for a cure. But then after all that, I’ll get up, dust myself off and keep it moving. Life will not stop for me or my loved ones. I choose to fight fight the fight. I choose to enjoy my children I choose to laugh and smile and know in my heart, that this too someday shall pass. I pray day & night, not just for myself but for all IC victims. I CANNOT allow this monster control my life!!!! No way am I going to live the rest of my life feeling defeated!!!!!
  • Well, I hate when I hear, “You aren’t the fun person you used to be!” Who would be when in constant, severe pain. But I know I am so much stronger than I ever knew I could be!! I’m one tough chick!!!! And a fighter for sure!!!!
  •  Im in denial of all the meds it takes trying, and telling myself this will eventually go away once I make it thru menopause. The good part is finding a knowledgeable dr who knows your not crazy. Keep hoping with more research someday there will be an answer. Or medicine without horrible side effects. I moved away from home after my diagnosis. For years people in my life thought I was a lazy hypochondriac. My mother plopped a pile of medical bills on my lap when I was fourteen and told me I was a waste of money, before my diagnosis. Now, people think of me as the sick girl: a constant designated driver who can’t eat anything or stay out too late, and works too hard. A lot of people think I’m on drugs all the time, but it’s the pain making me loopy most of the time. I’m lying to myself about how tired I am every day.
  • That’s a hard one…most people just DON’T understand it, or want to. So most don’t think I’m any different.

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

 

Daily Topics for the 3rd week of IC Awareness Month

And now ladies and gentlemen, I present to you again….The daily topics for the 3rd week of Interstitial Cystitis Awareness Month.

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September 15th- Write a poem about pain.

  • Use your adjectives!  Tell me about the mental effects, the strain on relationships. Bare your pained soul on this one guys.. No holding back.

September 16th-  Most of the topics I have chosen have been to help us remind ourselves of the positive and not get lost in the pain. For this particular topic I want it to be as open and honest as possible.  Say exactly how you feel and say it all.  Write an open letter to the doctor or medical professional  (Assuming you had one of these asshats) that told you IC wasn’t real. Let him know what that did to you.   Please leave names out of it as this is more for a healing purpose as it is for revenge.

September 17th  Share your favorite IC friendly recipe with a newly diagnosed ICer

September 18th- You’ve been asked to give an acceptance speech. What are you accepting? A team of doctors and medical professionals whoa re going to get your health back on track. Tell them how much it means to you to have them working towards a better healthier you.

September 19th-   Your bladder crawls out of bed in the morning, makes its way to the bathroom to brush its teeth and relieve itself and catches a glimpse of itself in the mirror. What does it see?

  • Is it male or female…is it broken and bruised? Does it have scars yet is still beautiful? Tell me what it sees.

September 20th- What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of is to relive, it’s important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I’m sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they’re not alone.

September 21st  What is your bladders favorite playlist. Song titles and artist.

  • I won’t even start on mine. It’d go forever.   But it’s all the music I listen to when it gets really bad.

Those are your 3rd week’s daily topics!  You can take part in as few or as many as you like. Remember, don’t post your answers/responses until the day they’re actually due…September 7th topic on September 7th and so on…if you’d like your answers to be submitted anonymously email them to me directly at tali@icramblings.com and I’ll be sure to post them as such! I will be posting the topics day by day as well on the IC awareness month page, the IC-network, Facebook, my pagetwitter, and other support groups. You can post your responses on any of pages listed above or you can email them to me as you go. Whatever is easiest for you!

I explained the rules more in depth in an earlier  post for anyone who has just stumbled upon this project! Please feel free to refresh yourselves a bit and share with others so that everyone participating is on the same page!

Any questions, don’t hesitate to contact! I want this to be a creative and fun experience for all who have chosen to participate! 

 

Primary Resources for the new IC patient (as told by IC veterans)

SEPTEMBER 10TH

 Tell a newly diagnosed ICer what your primary resources are for finding out information about this condition. Tell them what, in your opinion, are the best places to look for reliable facts and that there are in fact, plenty of other ICers they can reach out to.

I know it sounds redundant but you’d be amazed at how many newbies aren’t aware of the resources that are out there for them to utilize. Give them a run down of what works best for you. It makes a huge difference.

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Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 10. 

Keep in mind that these answers  came from all different kinds of ICers. Young, old, in between. Diagnosed for years and diagnosed 10 months ago. There are people that believe in some things, those that will try all things, and some that believe in nothing. Take away from this the things that you can relate to…and that is all. It’s a guide. A suggestion. Not everything that works for one will work for the next. But..hearing about what others would tell you about their experience….should be an experience all on its own.

  • When I met with a couple of newbies I shared with them a pamphlet I put together and went over any questions they had. I also shared useful websites to look at
  • My best resources have been interstitial cystitis association ICA, interstitial cystitis network, Facebook IC groups and Facebook IC friends and my docs
  • Instead of talking to doctors or doing internet research (besides ICA), talk to other IC patients. IC forums are the best place to find different tips on controlling and maintaining it.
  • i’d have to say that personal research, done on the web and by reading articles/books has provided me with the most information about IC. i regularly check wikipedia and have for the past several years. if a friend or family member wants a precursory idea of IC, i always suggest they start there. the information on wikipedia is from peer reviewed medical journals and the AUA guidelines. however, it is important to note that wikipedia will not give you the complete picture: it is a starting point for understanding the basics. the book “healing pelvic pain” is very informative as well as many of the books you can find in the IC-network online shop.
  • i have also relied on my urologist that specializes in IC for the most accurate and up-to-date information. unfortunately there is a caveat in relying on a medical practitioner: i have come across urologists who rather than admit they know little about the condition, proceed in treating it with outdated information and methods. a urologist once told my sister (who also has IC) that since she doesn’t have incontinence, she must not have IC. another one performed hydrodistention on her, which ended up severely agitating her symptoms. it is not what she needed and yet, he did not present other treatment options to her. as unfortunate as it is, it’s possible to encounter urologists who do not know enough about IC. do not let this deter you from finding a good urologist; they do exist! I would suggest finding someone who specializes in IC, and regularly attends workshops and conferences like the AUA conference. There is nothing wrong with seeking out a different urologist if you feel like yours does not provide you with ample information and is willing to discuss and try a a variety of treatment options with you. although it is necessary to have a good urologist, i find you cannot solely rely on your doctor for answers. your own understanding and quest for information is your biggest asset and most powerful weapon in combating IC. consider research part of treatment because the more you know, the further you’re going to get with your urologist and specialists. go to your appointments with a list of questions, ask about treatments you may have heard of on the IC-network (if you don’t have an IC-network account, register for one now) or from other sources. also, once you get a good urologist, know that mainstream medicine is not the only avenue you can pursue. there are other resources like acupuncturists, pain clinics, physical therapists, psychiatrists, naturopaths, etc. who you may need in your IC fighting arsenal. when i hit a dead end with my urologist, and found myself suffering just as bad from side effects as from IC, i knew i had to branch out further. there are books and web resources that can help you understand the multifaceted nature of dealing with IC. the best person to ask for other paths to pursue, is your urologist and/or his/her nurse. IC is so much more than having a problematic bladder, and other specialists as well as your own research can help you understand things like coping with anxiety and depression, muscular rehabilitation, natural supplement treatment, being able to exercise again, learning to not be afraid of food and so on. so, internet research, books/articles, an IC specialist and alternative therapy resources have been essential for me in getting accurate and current information. also corroborate what you hear with various sources – this is the best way to ensure that you are receiving good information. as for meeting other IC-ers, find out if there is a support group in your area (by looking online or asking your nurse/urology clinic). even a chronic pain support group is helpful. the online forums on the IC network are also an indispensable resource for meeting other IC sufferers.
  •  One of my best resources is the support group for IC that my urologist provides once a month. We can talk openly about our condition without judgement or negative reactions. We really talk! We can relate our experiences with others. Its not just ICers. It is moms, sisters, husbands and significant others. We also have guest speakers who share what they can offer to help with IC, such as acupuncture, yoga and physical therapy. What I have learned though, is that we don’t walk in any ones shoes and they don’t walk in ours. Every one of us has a different story. How we eat, sleep, travel, medicate, handle flares, even how we make love. Generally “how we survive”!
  •  I found you need to tap into as many resources as possible to find ones that work for you. The IC Network by far has been the best resource, but only after I learned how to use it as it can also be terrifying.The site itself provides integral information and supplies for healing, but the forum, for me, can be scary as there can seem to be no hope. I’ve realized now that the people who post the most are the ones in pain, while those that are feeling better are probablyout enjoying life. YOu need to remeber that for every one person posting there are many that aren’t on the forums as they’ve figured out a way to control their symptoms. Also using a naturopath, and finding the right urologist were important as well.
  •  Online was my biggest help!! and other ICers.I just found out about fish oil capsules. Hooray for relief!!
  •  I agree about reading Catherine Simone’s book! Doctors don’t know what causes it and for many people there are different reasons. But the one thing I would tell you is to NEVER believe that this is forever. It’s not! If you can get to the root of your IC, you can conquer it! The majority of people I’ve met with IC have overcome it, I’ve only personally met 2 that have not. So all though the forums are a good place to seek support, remember that they are full of people in need of support, so it’s a lot gloomier on there. Also don’t believe that you’re destined to a life of bland food and water. Find out what works for you. I know many people that went back to a normal diet once they got to the bottom of what was causing their symptoms. My doctor even said that not all those that get IC will have it forever. Some will and some won’t. Find a medication that works for you, check for gluten allergies, food sensitivities, Candida issues, underlying infections like Lyme disease etc. Everyone is so different and this is why I don’t believe we are fighting ONE disease, but rather many. Don’t give up! When a doctor tells you there is no hope.. Find another doctor! If you can afford it, find a Naturopath or a Functional medicine doctor who will search for your cause. Not just someone who will cover up your symptoms. There is hope! I’ve seen it!
  •  First stop IC network, read all the info they have, if you have a smart phone download icn food list app. Next follow the diet to a T all the friendly foods then slowly add other foods in ( elimination diet). Research, research, research!! Before you let the doctor decide how to treat you. Join the icn support forum take all advice with a grain of salt and more research! Good books to read are painful bladder syndrome by Philip weeks. Along the healing path by Katherine Simone, the interstitial cystitis survival guide by Robert m. Moldwin, and many more. Be your own health advocate.
  •  find a specialist, try instillations. change your diet. i cut out all the chemicals i could, from processed food, to body wash. avoid caffeine and alcohol & go on a bland diet, but gradually test things to see if they trigger flares. pyridium works for me when I have flare ups, it numbs my bladder. luckily I’ve been healthy for a little over a year! good luck & i hope you find what works for you!
  •   Number 1 priority: Read Catherine M Simone’s books. They literally saved my life.
  •  What do they mean by “in diagnosed auto-immune”. Google Dr Mark Hymen and check out his theory on autoimmunity. Pretty interesting. Also “The Immune System Recovery Guide”. Great Book!
  • The first urologist stuck the camera into my bladder and saw the inflammation. He filled me with saline and diagnosed reduced capacity. I believe him over the second one, but they are both with Cleveland Clinic so it’s now in my chart that I don’t have it, hence the frustration
  •  I decided to treat naturally so after the diet started helping I did acupuncture, pelvic floor therapy and started taking supplements. I take bladder ease today… 6 per day and it has helped me tremendously! Also I was very very very insistent with doctors and therapists. If one told me no, that it was in my head I just went to another and another. I was not going to go unheard!!!!
  •  Keep looking for your answers. We have to be detectives of our own bodies. Nobody else does it for us, sadly.
  •  I take ” Zija “I know it may be hard to believe but CRAZY as it sounds. I can have an IC flare up & 90% of the time drinking ” Zija” makes it go away.
  • . I read that turmeric capsules, aloe vera capsules, and vitamin d capsules will work. Daughter started taking them yesterday. Pray they help her.
  •  Stress causes flares, use scent free toilet paper, wash your undies separate from other clothes, do a second rinse cycle, and don’t use dryer sheets.
  • Pay attention to what you consume, find a good urologist.
  • Read the better bladder book and electronic acupuncture for bladder inflammation
  • Accept that caffeine and alcohol are no longer a part of your life. Change your diet before trying anything else. Stress reduction seems impossible, but learning ways to keep your inner peace in the midst of chaos is crucial.. Reading The Better Bladder Book helped me along with trial and error of medications and changing my diet. Finding a Dr. who will work with you and understands how this disease can be different for each patient is really important.The IC Network was a huge help also.
  • Lots of research. Especially helpful: Solving the Interstitial Cystitis Puzzle by Amrit Willis (holistic nurse). ICN & ICA websites. Alliance for Pelvic Pain retreat.And google and research, research, research!!!!!
  • Support groups…asking for advice!!!
  •  find a good Dr one you can trust and have a open relationship with. i was blessed with that. educate yourself follow the ic diet and remember its not in your head and don’t let the hype get u down!!! any ic person welcome to friend i have had bladder issues since age three but diagnosed in 2009!!
  •  I have to recommend, for all those in New England particularly in the North East Kingdom, Dr. Sarver at Littleton Regional Hospital!!!

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

The IC Bladder guide for dummies.

SEPTEMBER 9TH

WRITE A QUICK START INSTRUCTION MANUAL FOR YOUR BLADDER.

Think of it like the little pamphlets you get when you buy a new hair dryer or drill. It’s the one pager that explains how to turn it on and make sure you don’t kill yourself with it. ..the one that you can’t believe they have to print for people. You know what I mean…

(I couldn’t resist)

  • Before using your Taliverse™ 85virgoBBB model for the first time be sure to properly prepare for activation by removing any dust.  Also be sure to heat the encasement to the required temperature to ensure full voiding and un-spasmed expansion capabilities.
  • Warning”, User Beware!! This device is susceptible to a virus known as the Insomniac Tweaking Twitch!! Once infected with this virus, there is no OFF switch. This system virus freezes the on button in place and begins the game known as Sleep Deprivation. There is know known cause or cure for this virus.
    Once infected with this virus, possible side effects are:
    Drowsiness is “NOT” an option! You “CAN NOT” sleep!!!
    It “Melts” the heat shield causing the urological region to go into heat overload
    You may also experience the “pretzel twist”, this syndrome happens without warning and feels as if the pelvic region has twisted and is trying to vacate the “nether” region orifice, also known as your ass!!
    Leakage is a high probability when you least expect it!

    Additional information:
    Do not be tempted to invite others with quick fix remedies to comfort you. This method will cause a taser like electrical volt of electricity that will travel through your system and send out an emergency alert to the entire network of misfiring nerves causing an explosion, a brief false sense of security which sets the virus in motion and allows the Insomniac Tweaking Twitch to gain more power.
    Remember! Remember! Remember! Remember! “THIS IS NOT SHAREWARE”
  • Warning, void bladder before and after intercourse. Warm up slowly. Go easy, as flares will most likely occur from hasty startup.
  • Warning, too much caffeine will cause flares. Too much spicy foods will cause flares. Acidic foods will cause flares. It is suggested you have A dependable friend or loved one nearby to confide in and dispense hugs as needed. Follow Elmiron instructions exactly: stopping BEFORE a 6 month course will result in immediate relapse. When flaring, it is best to flush your system frequently with WATER only.
  • WARNING: Interstitial cystitis is a very misunderstood condition. Be prepared to explain your unfortunate condition over and over and over and over again. You will have to explain to you employer,your family, your friends, _______ (fill in the blank) in a very embarrassing situation for all parties involved. Be prepared to be unbelieved and possibly ridiculed. Again, turn to your support person for hugs.

Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 8. 

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

 

The World Has Fully Accepted IC As A Condition: Daily household conversations

SEPTEMBER 7th

THE WORLD HAS ACCEPTED IC AS A COMMON CONDITION. WRITE A COMICAL DIALOGUE BETWEEN YOU AND A FAMILY MEMBER, MEDICAL PROFESSIONAL, SIGNIFICANT OTHER, ETC ABOUT WHAT GOES ON IN YOUR PELVIC REGION ON A DAILY BASIS.

Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 7.


Currently, it goes something like this:
Rainbow: Hi, how’s things?
Yummy Mummy: Oh, we’re fine. But how are you?
Rainbow: Not too bad thanks/ getting by/ ok today / enjoying the sunshine.. (depends on my mood)
Yummy Mummy: Yes but how are you really?
Rainbow: Well, I’m in some pain today, but I’m surviving! How’s little Sarah/Evie/Jane?
Yummy Mummy: Oh everything’s just hunkydory. But it’s you I’m worried about. You’ve been ill for nearly a year haven’t you? How awful. Do they know exactly what it is? Hasn’t anyone thought to give you some proper medicine? 
Rainbow: (biting my tongue) Thanks, I’ve been diagnosed with Interstitial Cystitis, I think I told you that the other week. I’m starting a new treatment soon. (or sometimes, I just kind of smile and look blank, rather than saying something sarcastic like ‘oh yes, i’ll suggest medicine to my next doctor shall I? What a wonderful idea!)
Yummy Mummy: Well, I don’t know how you manage. I just don’t think I could survive in your shoes. And being on your own too! How dreadful! and so on til the little ones emerge…..

In a Brave New World as outlined above, it would go something like this.
Rainbow: Hi, how’s things?
Yummy Mummy: Fine, thanks. How are you feeling today?
Rainbow: Well, my bladder’s burning and I’ve been on the toilet six times in the past couple of hours, dreading the drive to gymnastics club as I always need to pee on the way and there’s nowhere to stop.
Yummy Mummy: It’s a horrible disease, I read a big article about it the other day. You must be very strong in order to manage. Listen, my little ones do gym today. Would you like to share the lifts?
Rainbow: That would be a massive help, thanks.
Yummy Mummy: How are you coping in the evenings between school pick up and bedtime?
Rainbow: It’s tough when the pain is so bad that I have to lie on the sofa, and my bladder is screaming at me just to get into a hot bath but I have to somehow make the kids tea / do homework / music practise with them, but I’m hopefully getting some childcare help a couple of days a week and applying for DLA too.
Yummy Mummy: Great. It sounds like you’re having a tough time but coping well. Those things should really help you. Give me a call if you do need my help, but I don’t want to intrude!
Rainbow: Thanks, that’s really kind of you.

MASSIVE DIFFERENCE!

Tali: Babe, can you take the bread out of the oven. I’m flaring and I’m pretty sure my vag just caught on fire.
Derek: Sure. I got it. Better go put your weird lady goo on and rev up that heating pad. Get ya anything?
Tali: A gazillion million dollars, a pitbull, and a lambo.
Derek:Do you think your bladder actually deserves any of those things? I mean she really is kind of a bitch.
Tali: Hell no, she doesn’t deserve it but maybe if we get her pretty things she’ll learn how to act appropriately.
Derek: Doubt it.

Commercial: U see a woman…in a mall. Riding the escalator. And a voiceover says….while she crosses her legs and eyes and doubles over in pain…DO YOU EVER GET THAT CHAINSAW FEELING IN YOUR PELVIS? DOES IT FEEL LIKE SHARDS OF GLASS PASSING WHEN YOU PEE? all the while ppl at the mall already know what’s wrong w her and take her to a store that sells beds and lay her on the bed, bring her the new fast acting IC BLOCKER! TAKE 2 AND HAVE A NORMAL DAY…JUST LIKE YOU DESERVE

- You know the ice pick you keep in the freezer? is it missing? Because it feels like it sat in the stove before it lodged itself in my urethra

- Told you we should have bought futures in TP stock

- Bathrooms of the future, a tv for every pot, a pedestal to rest your head on.

-I’m really a vampire. Up all night, don’t like bright lights, hate my reflection in the mirror, want to bite people’s heads off.

-The cactus are playing tennis in my bladder again, hope it’s not a tournament.

-Today the cactus have decided to shove a concrete pole inside and climb it. They never run out of events, do they?

- I C, PFD, IBS, RA, F/CFS, it looks like I work for a covert government organization

- I need you to stop at the next exit with a bathroom, and not 15 minutes from now, the NEXT one.   *Can it wait until I see a Dairy Queen with Blizzards?*       Only if I get to drive the rest of the trip and you ride in the wet passenger seat.

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