IC awareness month

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 …

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? 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 …

Frequent urination is common with chronic pelvic pain conditions. Some people have to urinate more than 30-50 times a day. How many times have you gone today?

SEPTEMBER 23rd  If you are an Interstitial Cystitis or Pelvic floor dysfunction patient who suffers with urinary 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 did it feel like you had to go?  Sometimes it feels like you spend an entire lifetime in there. 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 …

A thank you note for all who have stood by when things got complicated.

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. 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. …

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. 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 …

Favorite IC friendly foods

SEPTEMBER 17TH  Share your favorite IC friendly recipe with a newly diagnosed ICer 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 …

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. 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 …

How nurses and doctors can single-handedly destroy those who are trying to find medical answers.

SEPTEMBER 16TH Most of the topics I have chosen have been to help us remind ourselves of the positive and not get completely lost in the pain. For this particular topic I want it to be as open and honest as possible. Say exactly how you feel and say it all. Write an open letter to the doctor or medical professional that told you IC wasn’t real or that you should just live with it. Let him/her know what that caused emotionally for you. Talk about the effects something like that has on a chronic pain patient. My only suggestion is to please leave names out of it or use something like Dear Doctor “doesn’t have a clue” or “Nurse Ratchet” as this is more for a healing purpose as it is for name calling. – Why Hellooooooooooooooo Nurse Ratchet.  What? I couldn’t resist… Below are the answers  I’ve received …

Poetry & Pain

SEPTEMBER 15TH Write a poem about pain. Below are the answers  I’ve received for IC Awareness Month daily topic # 15. Stuck My knuckles are white as we sit in the traffic jam. My children are in the back of the car, innocent lambs. ‘Give it to me!’ shouts one; ‘no I won’t, I had it first!’ the other replies. ‘Shut up!’ I yell. ‘Just shut up right now and let me drive’. I am so loud and so sharp they both start to cry. The car is silent now and my eyes are dry. I stare ahead into the stream of stationery cars and wonder if I have time To jump out, run behind a bush, or into a pub or a cafe, To relieve this burning, this screaming inside of me. Just then, the traffic moves. A few metres. There is nothing I can do. If we are lucky, it …

Sweet sweet relief

SEPTEMBER 14TH  Describe that exact moment when the pain lets up…even just a few notches…and you get to experience some sense of relief. Be super uber descriptive! Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 14. The best experience I have of this is in water. In the bath; or recently in the ocean. The horrible gnawing burning desperate feeling just disappears and I feel like myself again. I need to become a mermaid maybe.  I also take a lot of painkillers. I was on Buphrenorphine and Fentanyl but wondered if they were contributing to hesitancy so switched back to oral painkillers. When I try to stop, or cut down, I am in such bad pain I can hardly move. I am curled up crying with the burning pain of it. This scares the hell out of me. At the moment, I’m using Tramadol and Dihydrocodeine …

Ever had a UTI or gotten lemon juice in a cut? That’s what an IC bladder feels like every time someone with IC has to pee.

SEPTEMBER 13TH What would you say to a close friend or family member to try to get them to understand more about your IC struggle. Don’t use anything you’ve ever used before. Try a completely confident approach and something that people not of our “IC world” can relate to and think outside of the box. This is mine- I continuously ask people if they’ve ever gotten lemon, tomato, or other acidic content in a cut on their finger…or maybe a hang nail. Most people in this world will say that they have and then cringe just a bit. I tell them that is what a horrible flare can feel like for us every time we try to urinate. It usually hits a chord and they don’t dare to challenge. Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 13. Imagine someone shaved, with a knife, the first …

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

SEPTEMBER 12TH   If you could have any super power that could assist with IC  in a personal sense or a community sense, what would it be? I would be able to master the art of sleepwalking. This would enable me to sleepwalk my ass to the bathroom and pee so that my sleep cycle or bladder function weren’t disrupted. Ever. Below are the amazing answers  I’ve received for IC Awareness Month daily topic # 12.  Create vehicles that run off of urine and my professional peeing abilities would keep everyone on the road  cure it and make the world stop thinking i were a hypochondriac  I would make my body rid itself of it all together.. hello!!  Make doctors KNOW how painful it is so they would actually treat the pain!- long term- and KNOW we are NOT after pain meds, we are only wanting relief from daily agonizing pain.  I would …

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

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. 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 …

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