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!

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! 

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! 

 

Things We Are Still Thankful For Despite It all

SEPTEMBER 5th

 

EVERY TIME YOU GO TO PEE, THINK OF SOMETHING YOU ARE THANKFUL FOR INSTEAD OF THINKING ABOUT THE DISCOMFORT. MAKE A LIST,  HANG IT IN THE BATHROOM AND READ THAT INSTEAD OF FOCUSING ON THE PAIN. 

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Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 5.

 

1. I am grateful that I have a safe, warm, lovely house to live in. I like the work I’ve done on it and the cosiness of it. I like the fact it’s a secure home for my two children. I love my front room as the winter nights draw in and I can light candles and be cosy.

2. We are hopefully getting a kitten; waiting to hear back on one possibility. It was sad we couldn’t do this a year ago but I think I can manage now. In my mind’s eye she will be petite, canny, cute, intuitive, and her name will be Midnight.

3. I love the autumn – the crisp, sunny days; the rain that blows in from the west; the misty mornings; the drawing in towards Samhain and beyond to the death of the year.

4. I am thankful for my beautiful friends – I wish I could name them but want this to stay anonymous – but you know who you are – 4 or 5 of you I simply could not have got through the past year without your emotional and practical support. I love you!

5. Last but not least I am eternally grateful for the fact that I could have children; and the reality of my two wonderful babies, who continue to surprise and fascinate me as they grow through the days, weeks and years. I am blessed beyond belief to be their mother.

rainbowgirl 

My Corgi always follows me with a toy to throw. Playing fetch while on the toilet has become our routine. 

I use the time I need to really pee for praying and answering email…oh and for checking out FB posts

My dog is what always makes me smile. Luckily I have a cattle dog and he follows me in there so I don’t need a picture, I have the real thing!

My husband and I have bathrooms across the hall from each other so when I really cant pee he will go in his bathroom leave the room open and pee. Then i finally can

Our 6-month-old puppy brings me her toys when I’m in the bathroom. I think she knows when I need cheering up.

my beautiful granddaughters, my best friend Gail, and my PT!?

I hang cute & funny pics in front of the toilet so I have something nice to look @, since I spend so much time in the bathroom.

I look at myself in the mirror and appreciate what I see!!! Just being silly! But I do talk to myself in the mirror a lot!! Remind myself to stay strong for my children!!! They bring a smile to my face

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I am always thankful for the toilet and TP!

I wrote my list on toilet paper! I really am thankful for so many things!

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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 2nd week of IC Awareness Month

And now ladies and gentlemen, I present to you again….The daily topics for the 2nd week of Interstitial Cystitis Awareness Month.

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September 8th- Write a piece about the best memory you have after getting diagnosed with IC or after  the pain began. (I know that not everyone involved has been officially diagnosed!) The point of this exercise it to show that through all of the pain and suffering we, as humans with chronic conditions, are still quite capable of remembering the good things.

  • Be descriptive!

September 9th- Write a quick start ( summary)  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.  Have fun with this!!!!!

  • For example:   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 capabilities.

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

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.

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.

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.

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!

Those are your 2nd 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! 

The Pain of Interstitial Cystitis Has Taught Me Just What I’m Capable Of…

SEPTEMBER 4TH

WHAT HAS IC TAUGHT YOU ABOUT YOURSELF? WHAT STRENGTHS OR CHARACTER ATTRIBUTES ARE NOW PROMINENT IN YOUR LIFE

I combined some of the non-poetry answers from Day 2 into this one since it’s based on the same idea!

Below are some of the amazing answers I’ve received thus far for IC Awareness Month daily topic #s 2 & 4

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I have learnt that I cannot control everything in my life and that I have to relinquish control a lot in order to be calm. I am in a kind of a prison so I feel I have to just get through the days and make things as manageable as possible in these days. So I do not drink alcohol or drink coffee; I try to sleep well; I try to eat properly and not foods that will make my bladder angry. But it goes much deeper than this. I was a bit of a hypochondriac before I got ill and it developed to IC.
I have learnt that health is the greatest luxury we can possibly have. I guess you never know how much you loved something til it has gone.
I pray to get a better level of health back and meanwhile I just try to make life as comfortable and bearable for me and my two children. This disease definitely makes me more irritable; but ironically also much MORE patient, as I realise that everyone fights their own battles, their own struggles, their own inner invisible demons.
IC is not the only invisible disease.
So I try to judge less and listen more. I’m definitely less extrovert, but that is partly because I have to do everything at the speed of a 60 year old when I’m only 35. Inside, some days, I am screaming; I just try to hang on to the hope that either I will somehow get gradually better or go into remission, or find a better way of managing the pain and the symptoms.
For now, it’s just day by day, hour by hour.
I am still only just beginning to learn.’ – what IC has taught me about myself
–Rainbowgirl

   It took a lot of thought to put this “ramble” together. I was only just diagnosed about four months ago, and so far it’s been nothing but oppressive. The first, and seemingly ONLY, strength I could think of that I’ve gained so far is the fact that I eat healthier now. Big whoop. When I really analyze that, it’s actually more of a misfortune. I can’t eat ANYTHING I used to be able to eat, I can’t go get a little wasted with my girlfriends on the weekends, and I can’t enjoy a cigarette after a new, IC-approved meal. After meditating on this dilemma, I realized that in order to evaluate my strengths and positive character attributes I clearly needed to start at the REAL beginning: 10 years ago.
     I was sixteen. I’d started having really heavy, painful periods, then constant pelvic pain all the time. Most women reading this can already see where this is leading: yep, I was diagnosed with Endometriosis. My gynecologist told me I was the worst case she had ever seen. “Great,” I thought, “how terrible is that actually?” I’m going through that lovely teenage hormonal roller coaster ride, and the Endo triple twist with a 100 foot drop added in, and I’m incredibly impressionable. The surgery was done the summer before my junior year, and my lucky little teenage self started lovely Lupron when the school year began. I hated everyone, more than normal sixteen-year-old girls who aren’t on Lupron; people thought I was strange because I would strip down to a tank top and sit next to an open window during the month of January, but five minutes later I’d have all my clothes back on and the window closed. I lost all my friends because I was like a bi-polar maniac who couldn’t regulate her own body temperature.
     Fast-forward to twenty-two. I had been having considerable pain every single day for over a year by that time, and I knew what was up, but I avoided the gyno because I didn’t have health insurance. Finally, my dad decided to put me on his so I could take care of myself. I had what was now my second surgery in December, but this time they removed my appendix because it was adhered to my colon with endometrium, and quite a few nerves were severed in my back to help minimize back pain. This time, I refused Lupron. After what I went through in high school, I knew that was a dark road I didn’t want to travel again.
     My next and third obstacle was exactly two years later, at twenty-four, in December (by this point I was thinking that surgeries were Christmas presents). My third surgery also included the slashing of more nerves in my back because I still experienced back pain after my first nerve-cleaving. I opted for the Lupron this time around. The horrors of high school were well behind me; I figured I could get through this.
     Finally we have a positive here! The Lupron was helping; the mood swings were very mild, and the hot flashes were tolerable. However, I took it for six months, but the month after I ended it, the pain was back. It hit me like a tsunami. Or like an angry Mack truck driver who really dislikes the squirrel he ran over, so he backs up over it…and then rides over it yet again.
     Well, I went back to my gynecologist and he gave me two options: One, I could go back on the Lupron for another six months, and then discuss my options after that (meaning hysterectomy); or two, I could have a hysterectomy right away. Of course, there WAS a third option, and that was no hysterectomy, but, of course, more pain. I knew there was a chance that the hysterectomy wouldn’t work. I knew that it’s not a cure, but my gyno was sure that it would help me considerably, except he still didn’t want to do it. He left it completely up to me. So, since I had decided long ago that I would adopt children, I chose the hysterectomy (a partial–he left one ovary). I had it August 25, 2012, exactly one month before my 25th birthday.
     After I recovered, I felt AMAZING. Despite my damaged psychological constitution (I felt as if I wasn’t a woman anymore), I was pain-free. For the first time in nine years, I was pain-free! Then came December 2012. The pain was back. I couldn’t believe it. I was mortified, wretched, and enraged. I’d had two miraculous months, and then a slap on the lonely ovary. I was never going to be rid of this; it was going to eat me alive.
     To make a long story short, after trial-and-error, and yet another procedure, I was diagnosed with IC. Then my feelings were, “Well, I can’t seem to develop any disease that can be cured. I’m always going to have to live with these diseases, and just do my best to treat them and cope the best way I can.”
     I’ve been through more than any person my age should have to deal with. I know that there are a lot of people that can’t relate to me and can only give me sympathy. I don’t want sympathy. My experience has taught me that sympathy is the last thing that I want. I know that there are a considerable amount of people who have it a lot worse than I do, but they don’t need sympathy either. They need encouragement, and love. I’ve learned that I need to encourage myself to keep up with my diet, my medicine, my yoga, my meditation, and any other treatment and coping strategies I use. I also need to encourage others who have obstacles and restrictions of their own. I’ve learned that I need to continue to love myself, and love those around me who continue to encourage me. I’m not any less of a woman because I don’t have a uterus and can’t bear children. I’m not being punished by God or some other Higher Power for something I did in this life or the previous one. I didn’t get dealt a shitty hand or pick the shortest straw. And I’m not the sad little squirrel that gets repeatedly run over by the Mack truck driver. I need to live every day as they come, pick myself up every time I fall, and give myself a hug whenever I feel alone. I need to dry my tears when I cry. I need to pat myself on the back when I overcome the pain that leaves me gripping the sink while I sit on the toilet, or curled up on the floor next to my bed because my legs gave out when I tried to get up in the morning. I’m not afraid to try something new because it just might work. I must remember to make a difference in someone else’s life in order to make a difference in my own. And above all, I must always remain hopeful, because one day I will be cured.
–Jessica HobnerI have learned over the years that I am much stronger than I ever thought I was.

I’ve heard a few times how lucky I am that I was diagnosed with IC so young because I don’t know what life is like without IC so I don’t miss it as much… Interesting theory… The truth of the matter is I have no idea who I would be today without IC… it has molded me into the person I am… in good ways and bad! The bad seem obvious and hardly worth mentioning but the many positive attributes I have gained by serving my sentence of life with IC have been surprisingly beneficial.I would say the biggest gift IC has given me is my ability to laugh and smile through whatever life throws at me. It’s funny because I feel like people underestimate my pain because I’m a cheerful girl usually with a smile and joke nearby but they actually have it backwards! It’s because I am so sick that I can smile and laugh every day.
Some days I have to laugh so I don’t cry… some days I laugh in the midst of level 10 pain… some days I make jokes to convince my family that I really am doing okay… some days I just don’t know what else to do.
No matter the reason, the ability to smile through the pain has benefitted me in my everyday life more than I can even say. Keeping my heavy life light hearted and fun isn’t always easy but it reminds me that I am so blessed. I have a loving family who understands my craziness and self proclaimed hilarity but many people just don’t understand.
What would they have me do? Constantly moan and cry out protests from the pain? I’ve tried that… it doesn’t work!
So I laugh and I joke. I joke about my interstims being trackers, fax machines, iPods, and garage openers. I joke about wetting my pants: “if peeing your pants is cool, consider me Miles Davis”. I joke about being on Medicare at 26.
I guess my favorite part about this unique gift is the peace it gives my loved ones. It is a lot of pressure to know what to say and how to act around someone who is chronically ill but when I smile and laugh, I give them permission to do the same which breaks down walls around them.
IC is a part of me and in some ways I’m thankful for it. The gifts it has given me almost… ALMOST… outweigh the pain and agony of the disease.-IC taught me so many things: self-compassion, perseverence, independence, as in, “only I am going to be able to solve this problem”, and that I am an incredibly strong person. I was diagnosed 20 years ago, but I believe I have had it all my life I’m now 51… Interstitial Cystitis Today (Bladder Pain Syndrome) has altered my life so much that as a hairstylist of 30 years in the last 16 I have failed because of pain and discomfort of standing, I can no longer do the things I love on a regular basis… I don’t take pain medications because I have depression and don’t want to get addicted to the pain med’s…I am a strong woman like Marie Romano’s comment I too have found out i’m stronger then I ever thought I was… I love my Urology Pc where I go for care and the Dr’s and Nurse’s are outstanding they make you feel like its not all in my head that the pain is real..and they also teach you strength and being proactive when it comes to the illness…- I have learned who are my true friends and who in my family actually has a heart and not an agenda.

- Equanimity can be found

It has made me more open to telling about the disease and trying to bring awareness, I have even taught some of the doctors in our town what it is all about, I also educated my attorney. I care information with me and give it out to people.

 I have many wonderful women and men with IC. But most of it has taught me to appreciate me for who I am and what my limits are. I am far from perfect but I know no that if I try my best then it’s good enough for me. You can’t always please others, you have to take care of yourself! Thanks for those who keep me going… 

 It’s made me a much more positive person because I live every day to the fullest. As someone who knows chronic pain it is easy to forget that you have such an amazing life. People often ask me how I manage from day to day and the phrase I use is that “with a smile on my face”. I have become so much more determined to live a successful and happy life. I think when you have IC you can really understand what a “good” day is when you are feeling relatively normal. I know that living in misery will only hurt myself therefore I live everyday to the fullest and thank my family and friends for being understanding of the condition and loving me anyway.

-So thankful for the Internet and the people I have been able to connect with.

-Endurance. I can endure so much more than I ever thought that I could.

-The importance of education and advocation, people will never understand if they do not know.

-Patience. Sometimes it takes time to find help, to find support, to find level ground.

-Faith. God is not punishing us for our sins and does not abandon us to our struggles. He has never left me to fight alone.

-What real love looks like. Those who have stood by my side and held me up through all of the battles, all of the grief, all of the blackest moments of my life, they have taught me love.

-Compassion. I have learned not to judge a book by its cover, because I do not know the story. Everyone has to deal with their own struggles and they may not be the same as mine, but they can be equally difficult.

-To find humor in unusual places. Like my “I’m goin to da bathroom” song, or the fact that I know where all the best restrooms are whenever we have to travel somewhere, or the fact that my dream house would include a television/computer, book shelf, and office space inside the bathroom.

To take pleasure in the little things. Reading Redwall with my 10 year old nephew, finding out that my favorite garlic bread sticks are clean for me, watching Spongebob while my 3 month old nephew coos happily in my lap.

-That life goes on and no disease can stop me from living it.

IC- you showed me the fight I have within, that mentally and physically I am very strong and will not just roll over and give up.

 I am now more willing to stand up for what I believe in and more open to talk to people about my IC since I have been diagnosed.
 IC teaches me to embrace the days when I’m not in a flare up and on the days when I am in pain I try to have more patience because frustration and stress worsens the symptoms.
 I have found I am a survivor. It doesn’t make me feel any better for what I put my husband and do through. 
Ok so I read this, thought a minute and then could come up with NOTHING that was positive. Then it hit me!!! My IC sisters are my positivity with this disease.


Having chronic pain has forced me to learn to have compassion for others. I now understand there are millions of us suffering from invisible diseases.
IC had me down for several years. I was very depressed and I isolated myself. Through prayer and my faith growing stronger and deeper, I am stronger than I have ever been. I’veI accepted this hell on earth, but I refuse to let it consume me. I became addicted to opiate pain meds, put myself through rehab, and I now control my pain with hypnotherapy and meditation. Is it easy? No!!! As much as I hate this disease, IC has given me the opportunity to find out that I am strong, I am a fighter, I am special, I am worth it and I will prevail!!!

After the diagnosis I really feared with what unread about Ic but once those fears were dealt with my life changed for the positive. I found ways to deal with the ongoing stress . I started working out in the gym and I started eating healthy . Today I am 40 lbs lighter and am on aIc diet and I control the installations. In ways it was the best thing that helped me gear towards changing my lifestyle .

. IC, amongst other chronic illnesses, has taught me how to fight.

It taught me to be more Courageous

It has forced me to calm down over things since stress is a big factor in mine. I mentally cannot let myself get stressed or I’ll be in pain.
 Awe! So thankful for you as well! Such a blessing to have you and others who understand and support each other in this. 
 My positive is I have a great family life and we are so much closer. I stay home because I can longer work. The whole time I was really bad my hubby and kid rallied around me and held me up. I do not where I would be with out their support. Now that I can move around a bit better due to interstim and pain pump once again they make sure I do not over do it and support me when I do try to do a bit more. When I am having a bad flare day/week they come crawl in bed and watch funny movies so I can have only positive around me. I feel very blessed to have them and do have I.C. to thank in a way because it has really made us a tight family.

 Understand more about people with fibromyalgia (which I do not have), another invisible condition.

 IC has taught me to take advantage and cherish the good days when they come along. But it has also taught me that even the bad days can be filled with wonderful things like my family, friends, pets, art, poetry, meditation (the list goes on)..

Stronger, more sensitive and thankful for my family.

  It has taught me how to take care of myself and honor my own needs first. It has also taught me how to slow down to balance my life, instead of push hard, all the time, in one direction only.

One positive thing it has done is make me realize how lucky I am to have a loving caring and supportive husband through all this.

IC has taught me kindness, forgiving and understanding. I’ve learned to not be so hard on myself and others. I’ve learned to give myself space and time to do things in my own way. I learned to understand a new way of doing things and came to grips with..

My IC has taught me to love myself more and to be more compassionate towards myself and others…you can’t always look at someone and see there pain, sometimes it’s within so I started to be more caring towards others who also suffer from things/conditions they cant control wether it be something like asthma or diabetes or even depression etc…we all walk around with some kind of pain and now I can appreciate how strong a lot of us are I’ve had IC for 7 years and it’s been a really rough road but it gives me so much comfort knowing I’m not alone in my efforts to spread awareness about IC.

IC has taught me to listen to my body more. My body tells me if I’ve eaten something I shouldn’t have, it tells me when I need to rest or slow down. IC has forced me to care for myself more:)

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

If Your Bladder Had A Theme Song, What Would It Be?

SEPTEMBER 3RD

IF YOUR BLADDER HAD A THEME SONG, WHAT WOULD IT BE? 

Below are some of the kick ass answers I’ve received thus far for IC Awareness Month daily topic # 3.

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Pain’ by three days grace
Sex On Fire – Kings of Leon
Walking on broken glass ann lenox
I can’t fight this feeling any more. REO Speedwagon
Haven’t got time for the pain, Carly Simon

You lost that lovin’ Feelin’

Love Hurts- Nazareth

 Hit the road jack
My girl likes to party
Wake me up before ya go go!!!
Complicated- Avril Lavigne
We’re not gonna take it – Twisted Sisters
Theme from Rocky
Welcome to my nightmare –Alice Cooper
The Song that never ends!
Blister in the Sun.
Ring of fire
She’s Cute When She Screams
Sympathy for the Devil
Great balls of fire
“Give Me Novocaine” By Green Day
Every rose has a thorn- Guns n Roses
Tubthumping

Nine Inch Nails- Burn

Gota go gota go right now
Burn by usher!!
I don’t wanna be me – Type O Negative
Disco Inferno
I’m burning up for your love
The Jaws theme tune…because it slowly creeps up on me then attacks!
I’m Sensitive – Jewel
Hurt’ Christina Aguilera
House of pain
Gotta Go Gotta Go Gotta Get out of Town…
gimme something for the pain -bon jovi
Roy Orbinson, Crying over you
Something’s Burning, by Kenny Rogers
Highway to hell
Cry, patsy cline
Achy Breaky Heart.
Surface Of The Sun” by: Hugh Dillon
This girl is on fire
Roar – Katy Perry
Burn baby burn
Here comes Johnny
All Cried Out–Lisa Lisa and the Cult Jam
Pain- there says grace
I Can’t Shake Loose
Endure by Nonpoint
You drive me crazy – Britney Spears
Burn for you – INXS
Burn , Ellie Golding
Last Kiss by Pearl Jam…
Scream – Michael Jackson. lol — “stop pressurin’ me… make me wanna scream!”
Ring of Fire”
Living on a prayer
What you don’t know
Run by Pink Floyd
Bitch
Breaking up is hard to do…..
Misery by Maroon 5!!!
Na Na Na Na Hey Hey Hey Goodbye
Kiss Him Goodbye
Why Can’t We Be Friends” by War.
Fight Fire With Fire- Metallica
Highway to hell
I hate you so much right now’ by Kelis

Comfortably Numb

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

Interstitial Cystitis In Its Most Poetic Form

SEPTEMBER 2ND

SUBMIT A POETRY OR SPOKEN WORD PIECE BASED ON SOMETHING POSITIVE IC HAS DONE FOR YOU

Below are the chosen submitted poetry and spoken word piecesfor IC Awareness Month daily topic # 2.
All other responses can be found under the original daily topic posts on the IC-Network FB page!
If you emailed them to me and they didn’t fall into the poetry category I put them there so that the responses were still shared publicly! 

 

We Are

We are those who smile
In hopes to lift another’s spirit
And then there are those who fear it.

There are those who don’t know behind it lies pain
And that that person hopes to have the strength to do it again.
And yet they are those who purposely choose rain.

There are those whose dreams above the rest are to be cured
And then there are those whose superficial pride is what keeps them lured
And yet, they are those whose intentions remain blurred.
We are the unheard.

There are those who understand the meaning of life through pain to go on
And then there are those who are seeking pain to spawn
And yet, they are those whose own hearts they have forgone.
And though the world seems cold and gone
Like the night of a midwinter’s lost fawn
We are the the crest of hope in the mornings dawn.

–Jamie Lynn Johnston

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Today I saw a glimpse of the woman my daughter will be someday.
She tucked me in and stroked my hair, telling a story.
My son, my little man,brought me a cold pack and his pillow
for me to rest on, my baby was kissing me.
I wondered what this time of pain for me was teaching them.

I hope that because of this disease they learn compassion.
I hope they learn to nurture and protect
I hope they see how much they impact others
I hope they learn courage to face their fears

I hope they see my gratitude when they help me into bed
I hope they learn that they can depend on each other in hard times
I hope they find peace in the simple things and cherish every day
I hope they learn laughter and love are the best medicene

I hope they learn that illness doesnt equate to weakness
I hope they learn to have Faith in God.
I hope they learn to have patience with themselves and others
I hope they know I love them even when mama can’t play

My children left me to rest, taking my youngest with them.
They blessed me with their smiles and told me they would
take care of me today. Lesson indeed.

I hope that from my beautiful children I learn humility
I hope that I learn to be more loving and more positive
I hope that I learn to forgive myself of my limitations
I hope that I learn its ok to ask for help and to accept
it with gratitude, not attitude

I hope that I learn to show gratitude better
I hope that I learn that Im a power unto my self and to never
let IC dictate who I am
I hope that I learn that though others won’t understand my pain,
I can be understanding of them
I hope I can learn to stop worrying about those who dont care

I know that I am watched over by my Heavenly Father
I know that I am blessed to have a man who loves me
I know that I have incredible children and they are my teachers
I know that I am lucky to have friends who love me

I know that this disease IS real
I know that even in the darkest night,longest day, loneliest moment,
there are others like me who reach out
I know that someday this fire of pain will refine me into the strongest of steel
I know that when I walk, I DO NOT walk alone.

–Bromwynn

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IC doesn’t define me.

It doesn’t own me or control me,

even though some days I cry

and almost want to let it because it would be

easier that way.

I have learned that even though it’s hard,

you have to stand up for yourself,

be vicious in your struggle

to find balance, the treatments

that fit you and your lifestyle.

–Amanda Machonis

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Sometimes, the pain gets so bad, I can’t see straight and my heart rate won’t slow.
Sometimes, I don’t remember the last night I slept more than an hour at a time.
Sometimes, I have accidents.
Sometimes, I get discouraged. Depressed. Upset. Hopeless.
Sometimes, I understand that this is the life I have.
Sometimes, I am calm enough to accept and be grateful for this.
Sometimes, I cry, because I am so thankful I am even alive.
Sometimes, I actually thank my IC for changing up/fucking up/somehow forcing me to grow up to be thankful for my life.

–Brittany Ward

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Every morning I wake in pain
but I wake up next to my babies’ face
Every day going for a walk is a struggle
but the sunshine fills me up and I realize I’m alive.
Every day eating is a conundrum
I can’t have this ..I can’t have that..
but I have new tastes for new foods
before this disease I wouldn’t have
Every time I go somewhere my bladder interferes
its time to go , but I’m having fun
better find a bathroom near
I come back to find everyone is still waiting
they all smile I’m lucky to have my
friends and family by my side.
I’m lucky to be alive
Every where I go I see others struggling
I go out of my way to help them
because now I truly know what a life full of pain is like
it can take your body but it can never have your soul.

–Kimbrely Henderson

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Fight Like Hell
At first I fought because I was told to.
Then I fought for an invisible hope I wanted to show you.
Today, I fight because you have to fight, too.
Today, I fight because we just got bad news.
My mother is sick, and so am I,
We’ve both struggled with the possibility we could die.
But the moment they told me my little girl was sick, too;
That’s the second I decided,
I’d fight like hell…. For you!
–Amanda Burlin
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It began last September: a year ago.It was the end of a bad relationship and the end of a bad summer.

I bled from my backside and I was ill for two months solid.

I was in a little isolation room in a dirty west country hospital.

I thought I was going to die.

My brain, heart, body shrunk; when I opened my eyes all I could see was the grey

Tentacles of death, winding around me.

But I fought, and fought, and began to eat,

Began to emerge from the black.

And then one evening my bladder started screaming.

Not just a little whimper; a terrifying yell of surrender

And fury. I went to the doctor.

I went to another doctor.

My bladder stayed angry; furious in fact.

There was nothing much the doctors could do,

Except for look inside me, diagnose, tell me the facts.

But the reality is this:

My illness settled in my bladder.

It burns, pushes, complains, winges, niggles at me.

Some days I am ok; some days I am paralysed in pain.

And how has it changed me?

I’m quieter; I’m more grateful.

I’m more spiky; I’m less hateful.

I’m happy to do less and to aim lower if it means less pain.

I would give anything to get better.

I am campaigning for a drug that may make my hair fall out, because I want to get better.

So I have become desperate, and yet more calm.

There is irony in Interstitial Cystitis.

The people I did not really care about have faded away;

Those who love me and whom I love have become brighter.

Dear friends and companions whose kindness I appreciate every day.

My children have come to life in technicolour in my world.

I am blessed beyond belief to have them and even at the worst times

I thank this godforsaken illness for showing me how lucky I am.

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 The Weed

The weeds in a garden 
Must seem like its enemy 
Constantly encroaching 
And hindering growth 

Keeping tulips and tomatoes
From flourishing
With ease and fertility 

But how fresh and abundant 
Would that garden be
That flourished in spite
Of weeds and hardship

As a young lady growing 
Into the woman 
I have become
IC was my weed

No gardener could hold this 
Particular weed at bay 
So it reared its heads
Yielding its thistly leaves 

I thought it was
Holding me back 
From growth
From life
From positivity 

Until one day I realized 
I may have not bloomed 
As a healthy girl may
As a carefully weeded garden might 

But my roots were deep 
My stem was strong 
I persevered
I grew. 

I blossomed
With prickly weeds entangled 

I became more than a meer flower
I became a sturdy, enduring woman
The IC made me stronger
Just like weeds makes 
Any resilient flower

Now as a woman,
A veteran of the battles:
Good vs evil. 
Weed vs flower.
IC vs life. 

I know I am who I am
Because of my daily battle
With this encroaching and hindering
Weed of a disease. 

I will continue to flourish amongst my IC
Using it to strengthen me
The flower will do the same with the weeds. 
We will both produce abundantly

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 Almost Free
A diet change they said You see, will make it better, Are you sure I said? Yes indeed, said she.
And with the diet change, you see! I felt better when I pee’d. Other changes with this diet showed an upside. It helped me lose some weight I didn’t want and with this healthy eating. I have energy I feel I never had. And with all this said, This diet changed, Changed my life and now when I pee I feel less pain and I think. I’m almost free.
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These responses were submitted by numerous IC’ers and compiled into a post for your IC Awareness Pleasure!

If You Had To Give Your Bladder A First, Middle, & Last Name, What Would It Be?

SEPTEMBER 1ST 

IF YOU HAD TO GIVE YOUR BLADDER A FIRST, MIDDLE, AND, LAST NAME…WHAT WOULD IT BE?

Below are the amazing answers I’ve received for IC Awareness Month daily topic # 1. 

Ida Loo
Stupid Meaniebutt Poopoo Head
Evil Bastard Bladder
Agonizing Hateful Bitch
Lucifer pia doleroso
freakin’ Asshat Bitch
 Benny Bladder!
Hateful Monster
Needy abnoxious McLittlefuck
Cheap taiwanese bladder
Snarly Pyre Dribblepants
When she is good I call her my princess. When she is troubling me, I call her my bitch but ask her to be a princess again.
Stupid freaking bladder
relentless sob
I would name it Mark after my ex-satan (aka ex-husband)
Sir pee alot
Blad the Impatient

Insomniatic Tweaking Twitch

pain In Ass

THIS GIRL IS ON “FIRE”? 
Ivanna pee allthetime
Anita P. Too-Much
 Georgia P. Burns
Ivana Tinkle
 I hate you
 my f-ing bladder
I C Pee
Peenelope Burnice Stabbins
Hunner S. Lameson
 Stubborn old coot
 Ima Bea Burning
 Anita Pee Alldatime
 Where’s D. Bathroom
Wee Whizilin Warrior
 Satan’s Little Helper
 Defective devil organ!!
 pissy McWake Upatnight

 Anita More Pyridium
 Bipolar Betty the Bladder Bitch!
Bernie P. Hertz
Stupid freaking burning like hell broken down busted ass bladder. Mines such a mess it gets more than a 3 word name…kinda like how they named Prince George LOL. Nickname for it: my freaking bladder.
 Jerky piss off
 daily cramping machine
 Defective Pain Machine.
Dysuria Frequency Hunners
 Sir Pissalot
 I hate you
 Sensitive Sally. 
 Ruining my life
 Fucking damn bitch
 Miss Ouchy Pants
 Spawn of satan
Judas Beazulbub fuckupyerday
 PAT. Pain allthe Time
 Pees Fricken Hertz
Quityer Hurtin Dailey 
 Oscar the Grouch!
Achy Breaky Bladder
 T.P. Usealot
Dr. Painful McPissy
 Painful Pissy Polly
 Pain pain pain
 You fucking bitch
Bladdy Always-Burns
cock sucking bastard
Bladder of a Squirrel
 I gotta go lol
 Pain of spasem
Ow! Dammit! Not-again! lol
 Got to go
 Not very good.
Kevin, just Kevin, after my husband. It’s annoying and painful, just like life with him.
 Demon spawn
 Bernie Urine McPain
Pain and frequency
Belle E. Payne
 My evil twin!
Just go away
Pain from Hell
Miss Constant Burn Alot
 Miss Take Mylife Ynot
 Leave (first name) me ( middle name) alone ( last name).
Good Bad Ugly
 “Akhos Bourkan Hung”. (Akhos is a Greek goddess of pain, grief and distress, Bourkan is an Arabic name meaning volcano, and Hung is a Chinese name meaning deluge or flood.)
quirky biatch
 Li’l Miss P.B. Hurting
 Misery Payne
“DEPENDS” become Friends!
Please be NORMAL
  Ic forever painful
Goddess of Pain
Phil Bladder Pain!

Tinkle T. Tinkle.
  Please help me
 80 year old bladder!
 Demon from hell.
World’s Smallest Bladder !!
Feel pee alot
Make upyour mind!!!
 Piece of Shayt!!
 Urethra Broken Bladder
U DON’T WANNA-KNOW
 My death organPea size bladder.
Or P burns hot
Hurts a lot
Baby bladder.
Monster of Hell
Piece of Shit
mordacious rapid fire
Painful Pee Machine.
the monster on fire
non stop spasm
Chasity
Slow Mo’ Fo’
El Vejiga Diablo (the devil bladder)
Germane Diddly Su

Ida Loo (nee Gough)

Princess Pees Alot
red angry bitch terrorist

Spaz

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

Daily Topics for the First 7 days of IC Awareness Month

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

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September 1st- If you had to give your bladder a first, middle, and last name, what would it be?   

  • These can be as comical, serious, or quirky as you like! Use your imagination! 

September 2nd- Submit a poetry or spoken word piece about something positive your IC struggle has done for you.

  • I know this may be hard at first, but think a bit outside of the box. Maybe since you’ve been diagnosed you’ve had to become a better public speaker or have become more independent. Maybe this condition has taught you how to be a fundraiser or have a better sense of humor.  Here is a helpful site for tips on different styles of poetry writing if you’re not familiar with it and would like to give it a try. 

 

September 3rd If your bladder had a theme song what would it be?

 

September 4th- Write an article/entry about what IC has taught you about yourself. What strengths or character attributes are now prominent in your life?

  • My struggle with IC has taught me that I can ultimately deal with anything. It also made me realize that the more you learn about your body the more of a chance you have to manage it accordingly.  

September 5th Every time you go to the bathroom to pee….instead of focusing on the discomfort, pain, or annoyance associated with this very common activity, focus on the things in your life you are thankful for. No holding back! Everything goes!! 

  • For Example: A kid that always keeps you on your toes, or a really nice ass! That you are a culinary genius or that your dog is your best friend. Try to think of the things that make you smile…even in the worst of times. 

Make a list of your favorites and hang them in your bathroom so that you can read the list every time you have to go. Share pictures of your new “things I’m thankful for while I Pee” list!    If you’re on a budget and don’t want to just hang a piece of paper on your bathroom wall and don’t find it necessary to buy a new frame. Check out this framing alternative. Look at # 8!

 

September 6th- What do you know about your condition now that you wish you had known back then? 

  • My favorite is that not every single ICer is the same as the next. Not every single IC patient has urgency and frequency. Some only have pain and vice versa.  

 

September 7th- Imagine that the world has fully accepted IC as a common condition. Doctors understand it and treat accordingly. Society can accept public awareness campaigns. Write a comical dialogue between you and a family member, friend, significant other, or medical professional about what goes on in your pelvic region on a daily basis. 

  • Example:  
    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. 

Ok kids! Those are the topics for the first 7 days! 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 1st topic on September 1st 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 my last 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! 

The Mast Cell in Interstitial Cystitis: Role in Pathophysiology and Pathogenesis

An excellent article explaining the role of mast cells in Interstitial Cystitis. 

 

Excerpt:

Current evidence from clinical and laboratory studies confirms that mast cells play a central role in the pathogenesis and pathophysiology of interstitial cystitis (IC). In this article, we focus on the role of the mast cell in IC and examine the ways in which mast cells and other pathophysiologic mechanisms are interrelated in this disease. Identifying the patients with IC who have mast cell proliferation and activation will enable us to address this aspect of disease pathophysiology in these individuals with targeted pharmacotherapy to inhibit mast cell activation and mediator release. UROLOGY 69 (Suppl 4A): 34 – 40, 2007. © 2007 Elsevier Inc.

Interstitial Cystitis Awareness Month

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IC awareness month is fast approaching….what are you going to do to get involved and spread the word?   Please take a moment to check out all of the different committees that are being run this year by myself and an assortment of other IC combatants. We need help with writing, social media efforts, proclamations, poster competitions, blogging, poetry, political lobbying, and media relations. Reach out if you’re interested in getting involved.

If you’re one for writing/poetry/blogging  you can contact yours truly!

I will be posting more about my plans for the writing/poetry/blogging portion of this years IC awareness month in the next few days.

Annoyance is quickly approaching…

Hey…looky here.

September is fast approaching.Which also means genuine annoyance caused by none other than yours truly is quickly approaching as well. What does this mean you ask? SEPTEMBER IS IC AWARENESS MONTH. And this, my friends , can only mean two things: My mouth will not be quiet and my fingers will not be still. So, with all of that being said…

This is my official warning….a disclaimer if you will. The next 6 weeks of your lives are going to be spammed with talk of bladder stuff and not just by me but by many other men and women who have douchebaggish hellions with no manners for bladders.  It will be graphic. It will be gross. It will be more information about me than you all care to know. It will seem unnecessary to those of you who don’t believe this IC thing exists. If you are one of those people who does not believe this IC thing exists I will  shun the non believer. Shuuuuunnnnnnn……. and I will shun you into regret about your being shunned. Then you will have no choice but to shun yourself for being so close minded and dumb to begin with.I’m just sayin… That also means that you should prepare for the most brutal, painful, extremely long winded, and seemingly never ending debate you’ve ever found yourself in up until this point in your life. That is..until you see my point of view. If this is a challenge you are willing to take on please send in your applications before September 1st. Actually September 2nd would be better. The first is my birthday and frankly I don’t want to spend it defending the fact that my useless bladder is for real.  Also, If you plan on challenging me to the “IC does not exist” debate be ready to defend your opinion and your beliefs. I hate nothing more than mouth flappers who can’t back their shit when it comes down to facts and medical/scientific proof. You are entitled to your opinion but  please oh please oh please, you non believers you, please have your ducks in a row before arguing with me about something that I would stake the entire world’s safety on because I know how real it is.  My only head start for you is this. DO YOUR RESEARCH before stepping up to the plate. It’ll make your humiliation seem not so, shall we say….pathetic. Yes, I said it.

Now, for those of you who have IC or know someone who does, I am quite positive you understand the importance of this month. It gives us even more of a reason to tell everyone that will listen about why we are the way we are and why it affects our lives the way it does. It gives us a chance to explain. It gives us a reason to network. It gives us a chance to make a difference in our situation. It gives us more of a window of opportunity to fund raise.  I’m not saying that a massive change is going to happen all at once but for those of you who have been active in the IC community for say the past 6-10 years I’m sure you can see the difference. It’s a snowball that’s rolling ever so slowly down the bunny slope at your nearest ski resort but, by God, it’s still rolling. Slow is better than not at all. At least it hasn’t melted.

People will not accept this condition if we do not tell them about it.

The outside community will not know it exists if we don’t tell them how many of us it truly exists for.

Doctors will not treat it as a real condition if we do not speak about it as a real condition.

Hiding our pain and frustration = allowing our pain and frustration to continue to be swept under the rug.

Fight.

Spam the shit out of everything.

Hand out flyers. Hang posters. Hit up the local newspapers. Write a blog. Post badges. Start a fundraiser. Tweet away at all the other twits who don’t have a clue. Make fb pages…but be nice to each other about it please.

DO ANYTHING.

Because..truly…we CAN DO ANYTHING.

Only we get in the way of ourselves….well, we and our asshole-esque non- functional bladders. Time to put them bitches in check and control them for a change. September is our month kids. Have at it.

Now stop reading my shit and get busy!

Thanks Jill and the IC-Network for getting this up and running for yet another year….

***all pictures are borrowed from the official IC Awareness month website which is an IC-Network project!