IC Journey

Another Day

Posted in Uncategorized by LJ Johnson on April 19, 2010

When reading another’s blog I read about the “profile” of the typical blogger – usually female, neurotic…

The writer of the blog, of course, immediately said they didn’t fit the profile because they were doing theirs as an actual educational/informative blog, not for attention. In the end, though, I think all of us want some sort of acknowledgement in the world. In fact, in today’s very isolated but crowded existence, I think that many are lonely. It used to be, even 30 years ago, that people knew their neighbors, and regular picnics, card nights and similar things kept a circle of friends close. Today’s acquaintances are much more a nodding awareness than true friendship in so many circumstances. Let’s face it – real friendship takes time, and most of us have too many other things in our world to invest that kind of time in someone that we don’t live with. Between the kids’ activities, time for our spouse, activities in the upkeep of our home (gardening, yard work) and possibly our faith community, getting to know your neighbor is just not on your Blackberry.

My blog, actually, is because I want somewhere to say when I’m in pain, or say when I’m frustrated angry, disappointed, without having it affect the people that I try to wear my “game face” for. Is that neurotic? Maybe. I’m not writing it anywhere that I have an established network that might read it, though, and since I’m called “just another wordpress blog,” I’m expecting that I’ll get very little attention.

Today is a higher than normal pain day. Not sure if it’s completing all the church activities and travel, something I ate, or the increasing pollen count now that the rains ended a few days earlier. I’ll do an instill later and hope that it helps. If it does, it doesn’t last. Sometimes I consider abandoning all treatment, but every thing I quit ends up making it obvious that it was reducing my symptoms a little. I wish that there was something that wasn’t, and that this disease was more predictable and easier to treat. For those of us who are used to sucking it up, the insinuation that most of the pain is because of our bad reactions to it, and not because of pain itself immediately begs the question, “When did I suddenly lose my self-control and pain tolerance if that is an accurate statement?”

I used to LOVE my “toughness.” In high school I walked around with a broken hand for four days before my father saw it (he worked swing shifts and often we missed each other) and got upset and insisted my step-mother take me to a doctor for an examination. Except when it got hit, it didn’t bother me too much. When it got hit it wasn’t even the pain that was the issue, it was the flashes of stars that temporarily blinded me. Years later I tore a ligament in my ankle and broke the heel bone. When I finally found a specialist who diagnosed the issue three months later, she scheduled surgery. While waiting for surgery my toddler ran out into the road and I ran after him. The injured ankle gave way and the bottom of the fibula broke off. I felt it; I heard it. However, I knew there was surgery scheduled in two weeks and the fibula is not weight bearing, so I didn’t bother going to a doctor about it. I figured the surgeon could make sure it was aligned during the surgery and it could heal back correctly when I was recovering from the surgery. The doctor was rather surprised to find an additional break that had not been present on MRI or earlier x-rays, and a little confused about why I never bothered to find treatment for it after it was originally injured.

When I read studies where it is insinuated that most of the issue of IC is STILL “in your head,” and then a paragraph later states, “we are not suggesting the illness is completely psychological” I wonder if the last part is written for a type of political correctness, and the researcher is viewing the illness only through their own lens, and proving why their treatment protocol would be a better cure than others available. I then further apply my own knowledge of CBT to how I’m living within this disease, and wonder again what I could improve, and what strategies I will use to improve things that need it.

I end up being frustrated and a little insulted, because I somehow read “IC patient” as “me,” and when I read that if I’m in pain that limits my functionality I am catastrophizing (nothing can fix my pain, I will be in pain forever – in the end, suggesting that what I endure is the absolute worst and end of all happiness), NOT that my pain could actually be so severe that it turns me white as a sheet and puts me in a cold sweat. Truly, on my worst days, I LOOK for the good. I look for the sun shining, the three (what in the world happened to the rest?) blossoms on my peach trees, the dandelions and how strong and healthy my peonies are and the promise in their growing buds. I look at my loving, supportive and encouraging husband, and my sweet and funny son. I thank God for the companionship and personality of my various pets, and most of all, for the knowledge that my life is NOT just my IC. It limits a lot of things I used to take joy in, but it doesn’t have to limit my joy, nor can it steal my hope.

Sometimes I wish I could write a psychologist researching this illness and ask them to know ME, but then cringe, aware that the uniqueness of my personality traits would be boiled down to a few statistics, and the defense that I argue on my behalf would be discarded as “uncooperative patient.” My belief that I already understand how to manage my moods, reactions and behaviors and that I have an understanding of behavior modification and am doing my best would be challenged as an unwillingness to face my failures and truly change to overcome the illness that I deal with daily. My argument that at times I turn white as a sheet and end up sweating profusely anytime I’m up more than 20 minutes on a bad day could be written off to catastrophizing unless I brought along a witness who assured them it was true. Hmm… wonder if they would then entertain a diagnosis of folle aux deux?

I think psychology frightens me most because it allows no room for explanation – the things that we say are out of our control are labeled “unconscious desires” that we manifest. There are no accidents. Even spilling a glass of water at dinner is an obvious attempt to shame or humiliate someone else while we ourselves were unaware that we even had any ill feeling towards them. Psychology explains away all human freedom and choice, and in the end, that scares me more than even interstitial cystitis.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: