- 16 september 2015
- Gepost door: Fiona McKiernan
- Categorie: Contributors
While it is of paramount importance that the world understands the debilitating, unrelenting pain associated with Interstitial Cystitis (IC), this is not enough. The world needs to grasp the far reaching consequences of this pain. The restrictions it can impose on day-to-day living. The hopelessness it can inflict. The extreme limits it can push. The hopes and dreams it can dash.
It struck me that the first series of photos I created to express myself as an IC Warrior lacked this depth of content. It merely illustrated that I was inflicted by a monstrous, invisible pain. It did not convey the magnitude of my struggle. My post lacked the nitty gritty details of what IC REALLY means for me. I questioned whether I really wanted to share these embarrassing details with the world. Did I really want to expose my inner most secrets? Did I want to admit the humiliating fact that sometimes I have to use a catheter to pee? Did I want to admit that I am a 34 year old who has the pelvis of an 80 year old? After a long and hard deliberation I decided I NEEDED to. I needed to put my self-imposed shame aside to achieve greater understanding, not only for myself, but for fellow IC Warriors.
The following 23 photos represents what IC REALLY means to ME.
Interstitial Cystitis is also called Painful Bladder Syndrome. I was diagnosed almost 10 years ago but I think it started when I was 17. It is characterized by chronic inflammation of the bladder lining. My bladder has lesions on it like ulcers, which bleed. Sometimes the pain is so bad I would like to use my knife to physically cut my bladder out of my body. Unfortunately, the cause of IC is unknown.
Underneath lies the pelvis of an 80 year old woman. My inflammation is so bad my Granny’s pelvis is probably in better shape. You are never going to see a pregnant belly photo of me so please don’t ever ask me again when I am going to have children. And on that note please think twice before you ask any woman this question in the future…you never know what she is dealing with.
Unlike most other bladder conditions which cause a leaky bladder mine is the opposite – I can’t pee! Some days I can’t empty my bladder completely so I have to use this ‘IC Hat’ to measure my residuals (what’s left inside). The ‘hat’ sits over the toilet bowl so I can get an accurate measurement to track and trend.
But every hat needs a flower, right?! (IC has taught me to not take life so seriously and to enjoy the simple things like being able to laugh…I can’t laugh every day but I sure do try to!)
Sometimes my residuals are as high as 500 mls….that’s 500 mls which can stay in my bladder and cause an infection, or worse still back up into my kidneys.
In case you can’t visualize what 500 mls is, it is not one…
But 2 full glasses of urine sitting in my bladder which I can’t push out. In fact I can’t even feel it in there.
To prevent infections I have to use a catheter to empty my bladder.
IC symptoms (or commonly referred to as an IC flare) happen more frequently at night so sometimes I have to wake my husband at 3am to tell him I need to do a catheter. He hops up out of bed every time in a flash to help me… I am a very lucky IC Warrior.
My urethra (opening of my bladder) is so inflamed I have to use Pediatric catheters as I cant squeeze an adult one in.
I used to inject an ‘IC cocktail’ into my bladder to numb the pain and coat the lining….at least temporarily. This consisted of Lidocaine, Heparin and Sodium Bicarbonate.
But I can’t use Lidocaine anymore as a few months ago I got Lidocaine Toxicity from doing so many instillations. The doctor told me I was very lucky I didn’t have a heart attack….I’m not sure why I’m using a photo in which I’m smiling?! Maybe because I am happy I am alive?!
Can you wait a minute please I have to run to the loo again...
I spend a lot of time in my bathroom…IC Warriors can pee up to 60 times a day as peeing helps relieve the pain. Just getting out a little drop helps so we go very often. I have never counted how many times I go in a day but I know my brother often asks “Why does Fiona go to the toilet all the time?
This is a more typical pose!
Sometimes the pain is so bad I can’t even close my legs.
People often ask me why I always wear dresses and hardly ever wear jeans….well now you know! Jeans cause me too much discomfort.
Some IC Warriors can manage their symptoms with diet, lifestyle and medication but I could not so 5 years ago I got this awesome device implanted in my lower back/butt check. It is called a neurostimulator and it taps into my spinal cord nerves, eases the pain and helps with my residuals. Prior to my implant I was confided to the house, on the couch. This implant has given me my life back.
My implant is buried under these scars. I can feel it under my skin but it doesn’t bother me at all.
With this controller I can increase and decrease the stimulation…up when I start to ‘flare’, down when my symptoms are under control.
This little device means I can LIVE again!
Everybody’s IC road is different. We all have different stories to tell. What is common among us all though is that we spend too much time in the bathroom and not enough time enjoying life! Let’s find a cure and defeat IC!
Please share for more IC Awareness
Please share my photos for awareness. We need to tell the world what IC REALLY means. It is only in doing so that we can achieve true freedom and liberation. True understanding in the world.
Fiona McKiernan, MS, RD
My name is Fiona McKiernan and on September 1st, 2015 I proclaimed to the world that I am an “IC Warrior”.