I Am An IC Warrior

My name is Fiona McKiernan and on September 1st, 2015 I proclaimed to the world that I am an “IC Warrior”. I always knew deep down I was a warrior but very few others knew. In fact, I have hidden my struggles with Interstitial Cystitis (IC), along with Chronic Pelvic Floor Dysfunction, and the many other chronic diseases often associated with IC, for over fifteen years. At the age of 34, fifteen years represents almost half of my life. I have managed to put a smile on my face every day, despite being ravaged on the inside by pain. I was not trying to deceive anyone but hiding it became the easier way of coping. When people say hurtful things like “You are imagining your pain; you need to see a Psychiatrist” or “You can’t possibly be in that much pain, you smile too much” you realize it is easier to become an IC recluse. That way at least you don’t have to defend your sanity, on top of everything else. But on the eve of the first day of IC Awareness month, I decided it was time to break the silence. We, as IC Warriors, have suffered in silence long enough. It is time for the world to understand this debilitating condition.

Like many others, I suffered for years before I reached a diagnosis of IC. At the time of diagnosis, I had already spent almost two years bed-ridden and was trying to get back on my feet. I literally had to pull myself out of bed and fight every step of the way. I had fallen from being a 4.0 GPA student, studying to be a Registered Dietitian, to being fed by my mother. My chronic fatigue was so draining I was falling asleep into my food and I was getting my hair washed at the kitchen sink, similar to my infant years. I was being left behind as my friends all moved on. I had lost sight of all of my dreams. In fact, one doctor told me I would never finish College. But I refused to be beaten. I refused to let some apparent specialist tell me I was not going to be able to do something.

I fought with every ounce of energy I had, and with the help of my close family and friends, I went from being weakened to a wheelchair to being a long distance runner. I have completed two half marathons, of 13.1 miles each. I have been described as “slow, but relentless”. This road has not been easy, and a rollercoaster analogy might be more apt, but if I had to pick one single thing that turned it all around for me, it was the day I got my Medtronic Interstim Implant. This neuromodulation therapy targets the communication problem between the brain and the nerves that control the bladder. In a matter of a few weeks I went from self-catherization to being able to fully empty my bladder. My urinary residuals went from 500mls to 10mls. My pain also significantly improved. Medtronic looks for at least 50% improvement in symptoms in order to deem the implant successful. But for me, I had 100% improvement. In essence, it gave me my life back.

Despite this, I still have the old familiar ‘IC flares’. For years I used IC cocktail instillations, with Heparin, Lidocaine and Sodium Bicarbonate. My husband learned how to do them for me at home so I didn’t need to go into the doctor’s office every day. But then something very abnormal happened. I got Lidocaine toxicity from doing so many instillations. This should not have happened. The theory they proposed was that I have a ‘leaky bladder’ similar to a ‘leaky gut’, so the Lidocaine crossed over into my bloodstream. I started to get numbness in my throat, a metallic taste in my mouth, tachycardia and black outs. Needless to say, I’m not allowed to do instillations anymore, but I really miss them, as they were my ‘rescue remedy’. Now I use hydroxyzine (antihistamine) and ice packs, and crank up the stimulation on my Interstim to get myself back I track.

I have also learned that during a flare I need to be nicer to myself. At times, I am my own worst enemy, always pushing myself to the limits. But I now know I need to take time to rest up. With IC, the bladder lining is so inflamed and irritated it needs time to heal. It’s ok to take a day off work instead of trying to struggle through. In fact, if I don’t rest in the first few days of a flare I end up crashing harder. So IC warriors out there…take care of yourself. Do not give up the fight. Do not let anyone tell you you can’t do something. Keep searching for your answers. They may not be the same as mine but they are out there, waiting for you.

It took me many years, but I eventually I proved that doctor wrong.   Not only did I finish College and achieve my dream of becoming a Registered Dietitian, I completed a Master’s Degree in Nutrition, and published two thesis’ and five peer reviewed articles in some of the biggest journals in the field of nutrition. Within my company, I have just been selected as one of 200 employees, out of 270,000, who will be recognized in Phoenix, Arizona in October for making an exceptional contribution to the workplace. As fellow IC Warrior of the Week, Cindie Gest-Arneson said, DO NOT GIVE UP….we have a lot to contribute to the world…let’s break the silence, raise awareness and defeat IC!

Fiona McKiernan, MS, RDN

IC Warrior

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Auteur: Fiona McKiernan
My name is Fiona McKiernan and on September 1st, 2015 I proclaimed to the world that I am an “IC Warrior”.
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