Saturday, May 11, 2013


It's no fun to have IC even though it is often viewed as a chronic, controllable disease. But having an illness like IC usually means we are "wedded" to the health system forever.

I posted a cartoon on my Facebook page the other day with the caption "Maybe I should just move here", meaning my doctor's office. I know I feel as though I spend more time at the doctor's office than I do at home sometimes and I could make that drive to the doctor blindfolded, I swear. I can give people directions around the hospital, medical building and the entire complex I know my way around so well! It seems we are either going to the doctor, picking up prescriptions, making appointments, calling for help or trying to unravel the mystery of our health insurance coverage. It seems to be a never ending cycle from which we can't escape. It consumes our time, energy and attention so much that it often becomes overwhelming.

How many of us have had to battle an insurance company over a denied claim, fight to find a good doctor, figure out what medications work or don't work to help our symptoms? I know it seems like every waking moment is spent focusing on our IC and in some way dealing with our health care system to the point of frustration. 

Even if we have a fantastic doctor, treatments that work for us and insurance we're happy with, it still feels as though we are consumed with nothing but our illness and how to manage it via the health care system one way or another.

But I believe that the best way to deal with this is to become as educated as possible. KNOW what your insurance covers BEFORE you pick up a prescription for example. Just last week I spent time on the phone with the pharmacy checking coverage on a new prescription and understanding how much it would cost and if there were cheaper options before I just went ahead and filled the prescription. I always check my prescription drug formulary every year to learn what changes, if any, have been made so I know what to expect. I go through it thoroughly and look up all the medications I take to find out if they are still covered, and what Tier they are in. Just because a doctor prescribes one medication, doesn't mean that there isn't a less expensive alternative sometimes. It's worth investigating before you fill a prescription. Don't be afraid to ask about this!

Before surgery, I always make sure I KNOW what to expect from the insurance company; I don't like surprises - who does! I also make sure to review all my questions with my doctor and make sure I am clear on what we are doing, what to expect and I make sure everyone I deal with in the hospital understands MY needs! I never take a pill or do anything without asking what it is or why they are doing it! The same is true when it comes to reading everything you can find on IC and associated conditions. We may have to work with the health care system for years to come, but being educated, knowledgeable and learning to be your own best advocate helps us feel more in control of our health care.

Don't let the health care system control you. Learn to control as much as you can relative to your medical situation. You have the right to know what your benefits are, what a doctor wants to do to treat you, ask questions and never agree to anything you don't understand.

We may have to work within the health care system for the rest of our lives, but we don't have to let it run our lives! 

Catherine is beginning to think she spends more time
at the doctor's office than at home!

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