Interstitial Cystitis ~ A Year to Heal: November 2011

Since ordering my educational materials for my Acid-Alkaline Journey, I listen intently for the daily rumble indicating the Mailman is near. Awaiting an arrival of anything is like watching paint dry or water boil. Do you remember waiting and counting down the days until Christmas or the last day of school? Each minute seems like an hour, an hour a day and a day a week. I wake up and think, “Will today be the day?”

I am not sure in which category my feelings fall. Is it Anxiety? Is it Fear? Is it Apprehension? Is it Excitement? Or, could it be everyone’s favorite answer on a multiple choice test? Is it 'all of the above’? There is one certainty I can grasp, it’s the venturing into the unknown. I am a planner, educator, athlete and coach by nature so, I like the feeling of having my ducks in a row prior to departure. Reminds me of the quote, "By failing to prepare you are preparing to fail."

At the moment I am standing on the platform of ‘Unknown’ waiting for the next train. Maybe 'none of the above' should be my chosen answer. I will circle 'none of the above' on my test form and add the word, “Apprecitement”.
So ........................ it’s not a real word, but feels very real to me.

Anxious: Uneasy and apprehensive about an uncertain event or matter; worried. Attended with, showing, or causing anxiety.
Fear: A distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid.
Apprehensive: Uneasy or fearful about something that might happen.
Excitement: The state of being excited. A person or thing that excites; stimulates or thrill.

I have spent hours cruising through the web to gather information as I wait, but it is not filling the void that this waiting game has created.

On a side note, I felt compelled to find the author of the Acid-Alkaline Diet Book, and I did. He resides in Switzerland and knew that paying him a visit was out of the budget. However, I could email him, and did! Thrilled to say that he has replied. That now equals 2 connections from half way around the Globe!!

Over the past 9 years, the illnesses and disorders have turned my world upside down. There is Kelley of the past and a Kelley of the present. Although I try to be that same person, the health issues have gradually eroded the person that I was. I have glimpses of the ‘old me’ as if you were to just catch a glance of yourself in a mirror as you run past. She is still there buried under layers of pain, medications and worry. I was always a worrier, but it takes on a new meaning when you worry about all the what-ifs of your new life.

What if I am somewhere and my pain hits me?
What if I disappoint the ones I care about the most?
What if people just don’t understand?
What if this causes me to lose my job?
How can I take care of myself when just getting through the day is unbearable?

No matter who you are, the ‘what-ifs’ will erode your confidence, your self-esteem and your belief in yourself. It was so gradual that I could have almost missed it, that is, until you realize one day that you don’t recognize yourself at all. Fear had replaced focus,solitude had replaced social life and tears had replaced laughter.

Prior to the illnesses, I was a high-school teacher and coach. I had completed my Master’sDegree in both Education and Fitness Promotion. I had trained in ran in the Hood to Coast relay here in Oregon and had trained to run the Portland Marathon. In college, I was a 2 sport NAIA and Division 1 athlete and pretty much completed and conquered anything I had set out to do. It takes confidence and belief in one-self to even take on many of these things, and that was never an issue. I was also a VERY social person, could not stand to stay home on the weekends, and was always out and about. I have a great group of social friends and our calendar was always full! I had conquered injuries, multiple injuries, prior to becoming ill, but this was different. The injuries of my past is for another post….too many and too complex to go into now.

Prior to being diagnosed, I lived in constant pain for 9 months. I missed 22 days at work and was in fear of losing the only job I had ever had as an adult. It got to the point where I could not work and I was dependent upon those around me for everything. I had always been able to care for and support myself my entire adult life. I am not good at asking for help or receiving it. During these 9 months, I had doctor’s appointments after doctor’s appointments, 2 exploratory surgeries and still no answers. I was even told that ‘I shouldn’t be in pain’. Well, I was! I was very lucky that my OB/GYN at the time had a past patient who had similar symptoms as I had. She had a hysterectomy to address the pain but once that was done, the pain was still there. She sent me for a bladder study before she considered doing a hysterectomy. Thank Goodness she did! I can remember very clearly waking up from my first hydrodistension, the doctor and my parents standing by my bed. My first words were, “Do I have it?” The answer YES, still rings in my ears. I remember my Mom crying, as I was and my doctor saying, “I will never let you suffer”. What a comfort that was and to this day, he has never let me down.

Little did I know then, that the initial diagnosis of Interstitial Cystitis was just the beginning of the syndrome and ‘buddy disorders’ that go with IC. Since the time of the IC diagnosis, I have developed, Fibromyalgia, Pelvic Floor
Dysfunction and IBS. All which are known to be ‘associates’ of IC. As if 1 wasn’t enough, the IC needed company.

This is not a pity-party, far from it. This is a time to put on the game face and as my new friend across the globe wrote, “I am taking back the reigns of my life”. Move over, it’s time for me to drive!

I thought I should include the 2 part video series that has lit my fire......If it inspired me, perhaps it may do the same for you.