Spring of 2013

It would turn out that the acceptance of the position of, "Team Lead" would be one of the best decisions that I ever made. By this you might think that it was clear-sailing or that it was universally positive. It was anything but...

The staff who were against me, continued to be against me. They were not fond of some of the changes, including having to be out of the office and with the patients. I took over the computer that the Ring Leader had more-or-less claimed.

The first thing they did was write up a list of duties for me to do. These included among other things answering the door to let patients onto the unit. In other words, they wanted me to be "their bitch". That is just a saying that was commonly used around the hospital for this sort of thing.

I survived though and helped to define the Team Lead role in the program. I saw first hand what management was up against and gained a new appreciation and admiration for the challenges they faced.

I could write scads on my work life but that is not what this blog is for. It is not about me and my story - it is about you and trying to help you move ahead with your recovery.

By the spring of 2013, I was relying more-and-more on my working memory. Up until this point in time, I was having to write everything down. At the end of April the surgery was performed to remove my colon.

Before the operation, the surgeon suggested that I wean off the hydrocortisone. She was willing to postpone the operation in order for me to do this. I friggin' couldn't believe it. Did she think that I was taking the stuff recreationally? Was anyone listening to me?

The scoping in November ran late and they had to give me hydrocortisone by IV. I was hardly able to sit up straight and was pretty darn sick. I had a bit of smoke coming out of my ears and maybe it was reflected in my voice when I said that would not be weaning off of HC...ever.

The operation was a son-of-a-bitch. I developed ileus which means that the small intestine was paralyzed. I had an N-G tube in, which is no treat and had had to walk and walk and walk. Activity was generally helpful to wake things up. You would have been proud of me though. Even with residual CFS, I was as active as I could be.

My wife snuck in my B12 injections. Folate nauseated me and so I went without.

The one thing interesting was that there was no mention of hydrocortisone ever again. I wondered whether I had in anyway demonstrated that I needed it while on the operating table. People with adrenal insufficiency can die if they do not get their cortisol augmented.

Eleven days without eating but finally my gut started to work and I was able to go home. I would lose over 30 pounds before slowly regaining part of it. As I sit here now 4 years after the operation I am still 20 pounds lighter than before. But I feel fine.

I had predicted what my genetics would be to Dr Hui based on my response to mB12 and mfolate. He had just raised his eyebrows at the time and clearly did not give this much credence. After the operation my 23andme results came in and I had correctly guessed my MTHFR status and was pretty close about the B12.

The most important thing to come from this was that my relationship with Dr Hui moved to "higher ground". He had always listened to me but now he "really listened". While I only see him a couple of times a year now, we still have this connection.

This is a good place to break as we need to discuss my 23 results next.


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