The Personal Side of this Journey

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. 

Packing for the Journey ~ To Do List

We all know how important it is to pack the essentials for any type of road trip or journey.   How many bathing suits, the multiple levels of sunscreen, toothbrush, toothpaste, make up and of course shoes to match every outfit.  I have plead guilty of the charge of chronic overpacker and planner.  My items are in totes, bags and spill proof containers, all with their individual labels.  So let's pack and plan step by step to success.

Started Blog ~ done
Find and purchase Education Materials ~ done
Acid Alkaline Book ~ done
Cookbook ~ done
pH testing strips ~ done (last time I saw these were in chemistry class, many, many moons ago)
Find and purchase a Juicer ~ NOT DONE

Who knew there were so many....not me.  Reading comparisons, consumer reports and checking out the cost.  What a wide range of pricing! 

The purchase will be for another day....today is filled with pre-surgery preparation.  I can't stand not having the house clean, the laundry done and things in order before I go in.  Just makes the post-op time much more relaxing!

What is Interstitial Cystitis ?

I think it is important to provide information on Interstitial Cystitis since this journey is centered upon documenting attempts to heal.  As with other diseases, this one is difficult to treat, there is no cure, no concrete idea of how it begins and affects both men & women. 

For more information, please visit any of the following links:

Interstitial Cystitis Association

PubMed Health

National Kidney & Urologic DiseasesInformation Clearinghouse (NKUDIC)

One difficult aspect of having this disease is that no one can tell, just by looking at you, that you have IC.  You may look just fine on the outside, putting on that public face we wear, that shows how you really wish you felt.  At first glance, the photos appear to be some kind of strange moon...to put into context, this is the internal surface of the bladder lining.  Here is what is the true picture of IC: