The Wheels of Sarcoid Go Round and Round

PURPLE BUSJust like the wheels on the bus go round and round, so does the grind of health insurance, pre-authorizations, prescriptions, follow-ups, etc… I have spent two months trying to get approved for a medication called Humira that has had some success with treating Sarcoidosis. The end result, after many phone calls, written statements from my Rheumy and myself, copies of case studies and a 30 day appeals process, DENIED. The reason given, Humira is not on the FDA approved list for Sarcoidosis. Seems to me that looking up the list in the first place instead of wasting precious time might have made the wheels turn a little faster.

Ironically the back-up plan was a chemotherapy drug called Cytoxan that does not require any pre-auth. It has greater side effects than Humira and I am almost sure that it is more costly. I was given the go ahead in a 3 day time frame and scheduled for next Wednesday for my first infusion.

I have had a few months to prepare myself for it but still feel some intense trepidation. I honestly don’t know how cancer patients process it. I have been through 6 years of this sucky unknown disease, ups and downs that most people can’t dream of, and more medicine than I want to think about. Why does this next step scare the crap out of me?

I haven’t quite figured it out. Maybe it is not knowing how my body will react to extreme poison. It’s not like I haven’t had nearly every side effect from every new drug I have taken. Been there, done that, too poor to buy the shirt. I know the reality of chronic illness, pain, doubt, hope, defeat, anticipation, having been run over by the wheels on the bus as they are going round and round. My brain tells me it couldn’t be any worse than anything I have already been through.

My heart is singing a different tune. Maybe, just maybe, I am afraid of failure. Maybe this won’t help me and my life will not change for the better. Maybe it will make me sicker. Maybe this will be the last option for treatment. Maybe my doctors will take their balls and go home. Maybe, just maybe, I am taking this too personally. Over achievers for the win.

Given the current climate of the health insurance industry, I am grateful for the opportunity for treatment. I am always amazed at the consideration of the health care professionals that I have, even when they don’t understand my disease. Not that I haven’t had my share of frustrating quackadoodles throughout these years, but they don’t last long with me. I learned early in life not to take things lying down, ironically.

So, I suppose it is time to put on my big girl panties and jump on that bus. Beep, Beep, Beep.

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