Sunday, April 18, 2010

Driving With My Eyes Closed Due to Undiagnosed Cushings

I've had Cushings due to prednisone use twice (a.k.a. exogenous Cushings). This story is about the first time, when it went undiagnosed.

I'd been on prednisone off and on for years. Right before the Cushings started, I had mono, worked with kids and caught no less than 6 upper respiratory infections in a row. So this meant not only constant ER visits, but lots and lots of prednisone, both by IV and in pill form. I would literally finish the antibiotics and prednisone, feel better for a few days and then start with the next bug.

My doctor at the time told me that, because I'd only been on steroids for a short duration, I was fine. The problem couldn't possibly be the steroids. I was asking all the right questions as a patient, but all doctors ever gave me were wrong answers.

Meanwhile, my quality of life was in the toilet. I could barely function...for years. I would try to go for walks only to end up crying and begging my husband to go get the car. Too weak to stand, I would sit on the sidewalk and wait for him.

Since I am stubborn we did this for years; trying to exercise, but unable to find the energy for it and collapsing in tears as a result. Very frustrating. Especially since I'd been such an active aerobics bunny before all this happened.

When I drove, I would be so tired, I would close my eyes for 'just a second' while driving 70mph on the highway. All I wanted was just a few more seconds of sleep. I closed my eyes while driving every day I drove for years. It's a miracle I didn't kill myself or anyone else.

Of course I gained weight. I had the moon face. The upper back fat. I never got the stretch marks though. (Someday, when I have time, and if we ever finish this home remodel and can finally unpack all the boxes, I want to dig out pictures and show the evolution of Cushings on my face.)

I knew this wasn't normal. I knew something was wrong, but I had no idea what. This was before I had taken any anatomy or physiology classes. I didn't really know anything.

Eventually, I dragged myself to an endocrinologist. He did listen to me and took me seriously. He ordered some tests. He was thinking Chronic Fatigue but also wanted to check my cortisol levels.

Unfortunately, I did not know that Solu-Medrol was the same as prednisone. Right before I showed up to the lab, I had been in the ER and received Solu-Medrol via IV.

So the lab work was useless.

The endocrinologist called me, furious. I mean, he was frothing-at-the-mouth pissed at me for what was truly an innocent mistake. I was not the educated patient then that I am now. I didn't know! He yelled at me over the phone, thoroughly reamed me out and then hung up on me.

I think he was the first doctor to yell at me like that. Sadly, not the last though.

So I never went back. Never got diagnosed. Never got help. I gave up. He was the last straw. Too many doctors now had told me there was nothing wrong. I decided to believe them.

I didn't know what else to do other than keep driving with my eyes closed and praying some day things would get better.

The asthma that gave me Cushings eventually cured me, at least I assume so. I got sick often enough and needed prednisone on a regular enough basis that, over time, things evened out. It took about three years though and by the time I finally felt good, the cycle started over and I developed Cushings again.

While it was diagnosed the second time around, it still wasn't properly managed in my opinion. More on that another time.

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