Chronic Pain Support

Why stepping away from it all is sometimes the only way to heal from within

As many people in the Interstitial Cystitis community know, I have been an active voice in the IC and Chronic Pelvic Pain awareness movement for almost 10 years. When I was first diagnosed in 2006, after years of unanswered questions, debilitating pain, and feeling completely isolated, I began a journey that would enable me to help thousands of chronic pelvic pain patients feel less alone, more educated, and stronger as they began the very difficult and lengthy healing process. For me, those years were the most gratifying, aggravating, heartbreaking, rewarding, and life changing times of my existence and the experience has forever shaped who I am as a chronic pain patient and as a woman today. Throughout the years I  happily put everything I had into furthering our cause because it truly made me feel good to do so, but as I got closer and closer to  my 30th birthday …

Dr. Drew’s Apology to the Endometriosis & IC communities

If you’re looking at this title and wondering what exactly Dr. Drew and his Loveline sidekick apologized for, I must tell you that you missed all of the excitement from earlier in the week. Please take a moment to backtrack and read all about it here so that we’re all on the same page. All caught up? Ok. Now take some deep breaths and shake it out…maybe throw a pillow or some other SOFT object at the cat, or the husband, or eat an entire chocolate bar in one bite. Jump up and down or have a proper adult temper tantrum. Do whatever you gotta do to deal and bring down the anger. After all, anger only pisses off a pissed off bladder more and high levels of stress are never good for hormones or maintaining a form of sanity. Point is,  I know how hard that video was to …

Why it’s ok to let go of the people who don’t support you.

      Someone asked me the other day if I missed the friends I lost during my journey with IC and other Chronic Pelvic Pain conditions. Almost immediately, the bitch in me legit laughed out loud  and in the most sarcastic tone I could muster asked “why,  should I?”   I guess it’s a legitimate question for those who don’t know me well enough to not waste the time asking a question like that in the first place or for those who really do believe in that whole “once a friend always a friend” thing. What it comes down to for me is simply this, ( and I am so bold as to say that most people would do much better if they followed the same path) if you have to let someone go because they cannot, will not, or dare not make an honest attempt to understand, support, …

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. …

The music that calms me down..

SEPTEMBER 21st What is your bladders favorite playlist. Song titles and artist. Below are the answers  I’ve received for IC Awareness Month daily topic # 20. Sometimes to be honest I feel too sad and low to listen to anything except the dull sound of the TV in the background whilst I stare into space. I listen to less music since I got IC, probably because I am more sad and introverted than I ever used to be. But I usually feel better when I do listen to music. So here goes: *The Scissor Sisters/ Basement Jaxx: good combination of f*** it / f*** you and energy-giving. *Lamb: the most emotional music when I want to just cry and cry – especially ‘Gabriel’. Lost love, lost opportunities; past joy flown. *Hole or Kelis or Faithless or even The Cure (haven’t tried this last one yet -from my teenage days) when I feel …

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 …

How long did it take you to get diagnosed?

SEPTEMBER 20TH  What did you have to go through before you were first diagnosed? How many doctors? What kind of tests? How many years? As hard as it may be for some of is to relive, it’s important for the people who have not yet been diagnosed to see that for some it took many years or many procedures to have an answer as it did for them. I’m sure many of us remember what it was like to not know what was wrong. This is all about reassurance. Let them know they’re not alone. Below are the answers  I’ve received for IC Awareness Month daily topic # 20. I was seriously ill last autumn from September to November with Cryptosporidium and Gastritis. I was in hospital for a month and had severe stomach and bowel problems and was dangerously underweight. Then, just when I was turning a corner in my recovery mid-November …

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 …

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. 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 …

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