The Retrospective: Part I (a guest post)

[This is a multi-part series which will be posted daily the rest of this week.  Robin]

by Vivant Malgré*

In my old job, when we got done with a project, our practice was to do a retrospective. What went right? What was learned along the way? What went wrong or could be done better? What would we pass on to those who might pass this way tomorrow?

A month after what appears to be a successful bilateral adrenalectomy with positive pathology (hopefully the beginning of the end of my Cushing’s “project”) this is my retrospective.

I have had Cushing’s for at least fourteen years. I know that it dates back to 1996 because I used to sew and there came a day when I could not alter a jacket to fit properly. I had this strange hump at the base of my neck and I could not find directions on how to fit it. I was a size ten but would bounce up to a size fourteen and back again. I gave up sewing.

Looking back, the next set of symptoms were probably occasioned by my adrenals being affected – I had signs of an autonomic disorder, could not keep down food at times and other digestive issues. And the beginnings of fatigue and the emotional issues that come with an HPA axis gone awry. I don’t think I was a very pleasant person.

The last round of symptoms were probably due to the loss of my growth hormone – no immune system, fatigue so bad I could not stay awake, and severe muscle weakness to the point that I could not lift a single pound through a range of motion. The worst symptom was the social isolation and apathy that comes with the loss of growth hormone. It was as if any social interaction is like the worst cocktail party you have ever been to. For someone who has always been outgoing, that was the biggest loss.

I have had pituitary surgery and a bilateral adrenalectomy. I have been on disability for more than two years and I am now facing completely rebuilding my life. I don’t know what will come back and what won’t.

In this journey, I have been seen by sixteen different endocrinologists and have visited six major research institutions. I sought treatment in seven different states. I have logged enough flying miles to circle the globe. I have about four inches of medical tests that I am gladly packing into storage, since whether those tests are “good enough” proof of Cushing’s is now a moot question. I am moving on.

Coming tomorrow:  What Worked

*pseudonym

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