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

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

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

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


Good To Know’s

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

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

Where will these daily thought prompts be?

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

Where should we post our responses

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

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

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

What is the point of this?

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

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

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

Fair enough.  Can we get started?

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


Daily Thought Prompt’s for September 2014 

September 1st-   Determination

September 2nd-  Old-tree

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

September 4th-  Isolation

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

September 6th-  

September 7th- Dismissal

September 8th-  We_Can_Do_It!

September 9th- 

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

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

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

September 12th-  Reminisce

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

September 14th-  dr-who-quotes

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

September 16th- 

September 17th-

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

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

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

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

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

Lyrics to “Timshel” by Mumford & Sons

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

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

September 19th-  

September 20th- 102661331_Munch_265471c

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

September 22nd-

September 23rd-

September 24th-

September 25th-

September 26th-

September 27th-

September 28th-

September 29th-

September 30th-

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!

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.

what-do-you-see

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!

Don’t say you can’t eat anything…

SEPTEMBER 17TH

 Share your favorite IC friendly recipe with a newly diagnosed ICer

bookccdiet

Below are the answers  I’ve received for IC Awareness Month daily topic # 17.

vanilla ice cream, with blueberries and honey

 –Steamed veggies, minus the onions. Steamed tilapia or salmon lightly seasoned with garlic & salt. Baked potato with a bit of olive oil. Works for me. It’s yummy & bladder friendly.

–chicken breasts or chicken on the bone with some olive oil. Use either dry or fresh seasonings, parsley, sage, tarragon, garlic(if tolerated), some salt( if tolerated). Bake in and oven at 350 degrees and broil a couple of minutes to get it a little crispy. You can also bake some sweet potatoes to go with the chicken.

– I love making stir fries with coconut oil. Mix with rice or another carb is great. I give myself a treat with Pizza small amount of tomato sauce and get along fine as long as I don’t have it often.

–White pizzas are the way to go. You can get a white cream sauce base or olive oil base and add bladder friendly toppings to it and remember to skip the diet coke and artificial sweeteners of any kind! Bone Appetit!

–I have pizza often, but with NO sauce and no offending toppings. It’s really good.

–Anything that has no artificial flavors, chemicals etc. Natural is the way to go. I can pretty much get away with anything in moderation as long as it’s natural and not processed. –Tali

 

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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.

sarcasm

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!