My very own IC… Why, thank you!

The tricky thing about interstitial cystitis is that every one experiences different symptoms in different ways and severities. It is hard to diagnose and hard to treat because each case is so different. So I wanted to tell you a little bit about MY IC. It is an individual just like I am and is quirky and frustrating just like my husband claims I am.

First… some positive tidbits! There are a few symptoms of IC that I don’t have to endure and I am so lucky because I cannot even imagine the lives of people with every IC symptom, there are extra gems in their heavenly crowns for sure!

Some people struggle with frequency, where they feel the urge to pee as often as every 10 miuntes! YIKES! Thank the Lord in Heaven above that I got to skip that one, because I would have lost it and rigged a catheter/ extension cord apparatus years ago. (You know I could not handle the bag strapped onto my leg… what if I tripped? Just sayin…ew)

Another one I got to miss out on is what they like to call nocturia, which is a fancy word for waking up to go potty during the night. Then you’d definitely see me on the commercials during The Price Is Right selling my new alternative to the catheter bag right after the B.B. King Diabetes commercial. No thank you.

Last but definitely not least, I have never had any signs of Hunner's ulcers on my bladder. Which are ulcers that attach to the bladder wall and just wreck all sorts of havoc! 

Unfortunately that’s where that list end and the negativity begins. Pretty much every other symptom of IC graces my bladder with its presence every day!

One of IC’s quirky traits is its irony… Retention is when no matter how full my bladder gets I cannot release the urine. For me this is primarily due to my muscles knowing the familiar pain that’s coming and they decide they would rather work over time and make some extra spending money so they all tighten up and no matter what their boss, my brain, tells them they won’t relax and allow the urine to pass through.

Here’s where you really get a kick from that irony… another symptom I have is incontinence. Those very same stubborn muscles work so hard that they finally decide they’ve had enough and need a lunch break… so what happens? The flood gates open and my bladder empties no matter what I’m doing… making dinner, sitting on my husbands lap, nursing my son, or even roasting a nice marshmallow and BAM! Flood. It’s like they have no regard for my social life… little jerks.

Urgency is another fun trait my IC was supplied with, I guess it explains itself. You’ve heard the sayin, “when ya gotta go, ya gotta go!” Ain’t that the truth!

I really have no medical ditty about this one… I just know that some times the urine makes my bladder so angry that little bits of bladder design to jump ship and I end up having to pass those out along with the acid pee! You could imagine how much of a joyful experience that is.

Last but far from least is my worst and most reliable symptom.  Pain… that’s what the Doctors describe it as but us IC’ers know it is so much more. All the previously mentioned symptoms cause pain but this is it’s own little category because I have several different types of pain.

• The pain I have when my bladder is full feels like it’s full of wet cement churning around waiting to be poured.
• (Irony again!) I also have pain when my bladder is empty. As rare as it may be, when it is empty it feels like a giant grocery shopper is squeezing my bladder to check for ripeness like a fresh plucked mango!
• One of my worst and most troublesome pain sources is when I have to go potty and I am finally able to get some out and the pure, flesh eating BURN I feel when the urine slinks reluctantly through my urethra is so searing that those pesky muscles toss their turkey sandwiches, pop on their hard hats, jump back into business and clinch right back up. So there I sit with a still full bladder minus a tablespoon of the sneaky pee. The pain is torturous as my bladder is full, my urethra is scorched, and there is no end in sight.
• Which leads to the pain of trying to push it out, the mere drips I receive as a prize are not worth the sweat and agony I put into it.
• Also due to those union muscle workers some times a few drops will be making their journey to the new world and those buffoons stop them and the droplets gets caught in “limbo”. That’s right… not heaven or hell, not bladder or toilet, limbo. Flaming urine in blistered tunnel… not pleasant.

I want to stress that my pain is not constantly severe, though always there.  It’s always changing but my life is good and I am blessed in so many ways. There… I didn’t want to end it on that cranky note.

So… in summary… IC sucks. Mine could be worse… but could be better! And… constructions workers are the root of all evil, at least in this theory and in the case of most traffic. 

Allow me introduce myself... oh and meet my archenemy!

Welcome to my blog... my guess is you're either reading this because you know me and love me, or know IC and hate IC! 

If you're in the know IC crowd let me introduce myself…

Hi! I’m Deni… I am a 24 year old, wife, mother, daughter, sister, granddaughter, in-law, cousin, niece, friend, and patient. That’s right I said patient… as in “what is the patients date of birth and symptoms”. Not the kind of patient that means I can actually watch the whole deliberation at the end of The Bachelor, because I’m definitely not that kind of patient. My favorite things in life are spending time with my family, watching my 7 month old son grow up, photography, reality tv (Hi my name is Deni and I'm addicted to reality tv... Hi Deni!), playing games, cooking and baking, spending time at my Grandparents cabin, reading, and writing!

For those of you know me but not my old nemesis interstitial cystitis let me introduce you, here is the definition brought to you by The Mayo Clinic website.

“Interstitial cystitis (in-tur-STISH-ul sis-TI-tis) is a chronic condition characterized by a combination of uncomfortable (UNCOMFORTABLE! I bet a man wrote this… sorry keep reading) bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain. While interstitial cystitis — also called painful bladder syndrome — can affect children and men, most of those affected are women. Interstitial cystitis can have a long-lasting adverse effect on your quality of life. The severity of symptoms caused by interstitial cystitis often fluctuates, and some people may experience periods of remission. Although there's no treatment that reliably eliminates interstitial cystitis, a variety of medications and other therapies offer relief.”

The symptoms on that same website were a bit more specific than some of you would care to read but to paraphrase they are: chronic pain in the pelvis, a persistent and urgent need to urinate, and frequent urination of small amounts. Also ic can involve retention of the urine and incontinence (Which is so ironic, right? You can’t go when you want to but you do when you don’t want to!) Anyway, the symptoms are very similar to those of a urinary tract infection… but chronic. A lot of what our bodies do involves the nerves and the bladder is no different. The nerves are supposed to send a message to your brain when you need to tinkle but for some reason those of us with IC have a crossed wire or two. So we either think we need to go when we don’t or we don’t know we need to when we really do.

So don’t call me Webster but that was my definition of interstitial cystitis… I’m not sure how medically accurate that was but hopefully that helps you understand a bit! 

This blog will follow my life and reveal my daily challenges of trying to be a normal, stay at home wife and mom while constantly changing from my apron into my armor to battle the fire breathing dragon that is my IC. I hope that through this blog I can provide an update for my friends and family, knowledge for people whose loved ones battle this disease with me and most importantly comfort for my fellow IC dragon slayers!