Something’s Wrong with Me

Or, Diagnosis Part I

I wasn’t worried when the orderly tied my feet to the bottom of my hospital bed. It was September 2005 and I had just had major surgery. Someone had put the emergency buzzer next to my hand but I was soon yelling for the nurses (or trying to). I simply couldn’t command my hand to move the required inch to grab the buzzer. The solution was to put the buzzer in the palm of my hand with my fingers wrapped around it.

Now the sheets on the perfectly made bed were pushing my feet into an uncomfortable position and I couldn’t find the strength to move them. So the orderly righted them, then tied them down. I even laughed when hours later one of the surgeons tried to carry me out of bed to take a few steps and I’d forgotten about my feet being tied to the bed frame.

Maybe I was high on all the post-surgical morphine and Vicodin but none of this concerned me. I just assumed it would all be fine. I’d be back to yoga and career in a jiffy. My cousin Kola, Janine and Barry were standing in my hospital room waiting for Dr. Nezhat to discharge me so they could take me home. But the good surgeon walked in and said I wasn’t going anywhere that day.

The next thing that happened still breaks my heart when I remember it. I reacted as if I’d done something wrong. I insisted I would be fine and I could go home. Dr. Nezhat looked at me with this gentle, quizzical expression on his face. “It is not your decision,” he declared quietly but firmly. I now know that this kind of emotional pattern is typical in the psychological profile of Chronic Fatigue patients. Of course these things get set up in people for all kinds of reasons. In my case, I recognize how I learned to survive the emotional minefield between my warring parents as a child.

In describing the way my body had responded to the surgery, Dr.¬†Canida used the word “miracle” during a post-surgical exam. But Dr. Nezhat was concerned that while the physical results were spectacular, the situation he’d found was unusual. He’d had to abandon the original laparoscopic plan. When I asked him to explain, he talked about how he gets the worst cases referred to him from around the world. In his career, he’d only seen one other case worse than mine. When he warned that it might be a year before I felt normal again, I almost scoffed.

It was January 2006 before I realized something else was wrong. I had been pushing myself trying to shake off this fatigue. Somehow I was getting out of bed each morning and walking a quarter block, then half a block and so on. But I just kept getting worse. I knew how to eat well, how to take care of myself. What was happening?

I returned to the two doctors, one medical and the other naturopathic, who had helped me prepare for surgery in 2005. I’ll call them Addison and Bailey respectively. Addison is a very smart, highly regarded doctor with an office on Welch Road near Stanford Hospital. After many scary tests, which were thankfully negative or “normal“, Addison seemed to regard me with suspicion. I now believe that for this doctor, being used to being smart got in the way of properly diagnosing something that was not immediately apparent. When Addison refused to write me a note for jury duty, I was devastated but realized I had to consider other options.

Bailey was more open minded and honest about being stumped. He wrote the jury duty note saying I was suffering from adrenal fatigue. She had done tests that were different from Addison’s tests and we got a bit more information. For example, Addison did a test that showed my adrenals were healthy (i.e. not diseased) but Bailey’s adrenal test showed they were completely depleted. He couldn’t understand how this could be but tried a few things. Some helped a little bit, some made me worse.

By this time, I had sold my home and rented a small apartment. Having a townhouse to myself had become unbearably overwhelming and I liked the idea of having a landlord be responsible for the building. I thought I would just rent for a few months, take care of my health, buy a new home, get on with my life.

Oh well. At least I’d missed the real estate market meltdown by a hair.

Next week I’ll write about deciding to figure things out myself. What questions do you think need to be answered in this Diagnosis series?

9 thoughts on “Something’s Wrong with Me

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