The idea of writing everything down has been marinating in my brain for quite a while. In fact, after a few false starts I actually started building this website as a page on another site I had been working on. After I had my second pituitary tumor removed during the waning of 2009, I paused for a moment and then went on with my life. I was done. Cushing’s had returned but I had beat it back. I had won and I was ready to stop being medically complex and get on with living my live. And I did.
Well, for a while anyway.
It happened so gradually, I hardly noticed. Something wasn’t right. I was living on my own and working full force, but I wasn’t feeling well. At first it was a headache that wouldn’t go away and a trip to the ER and a hospital admission. Lots of tests, few answers and a clutch of new orange prescription bottles that would prove ineffective and each came with a host of fabulous side effects to deal with.
Then came the face pain. Doctors at one well respected university didn’t seem to know what to do with me so I was shuffled from one specialty to the next until finally one neurologist looked at me and said, “I don’t think we can help you here, but here is the number of a colleague that may be able to help. She does cutting edge stuff. I think you will find help there.” (She didn’t mention that the new doctor did not accept insurance, but that is a story for another post).
So I got a new diagnosis and many new therapies and prescriptions.
And I got a second opinion, and a third, and so on.
No one mentioned Cushing’s despite my two previous go-rounds with the Cushie-beast. When I bring it up they dismiss it.
I continued to slog through a life dotted with doctors appointments and lab tests. My parents come to visit and stay longer each time as it becomes clear that I am no longer able to get by on my own.
Tests, procedures, hospital visits begin to happen more and more frequently as I continued get sicker and am frequently incapacitated by the pain. In early 2014 I flew up to my parents house for a short visit that turned into a permanent stay.
And in January of 2015 I underwent my third pituitary surgery. And every day I struggle with my health. And I that’s what I’m here to share. The before, the after, the during, the now.