Day 6: Cushing’s Awareness Challenge 2016

The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:

 

Egads!  I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.

Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…

Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…

The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.

Rest

So many of my posts are about napping. As another musician, I like the concept of “rests” in both contexts 🙂

Zebraontheside

In music, there are many kinds of rest. There are small rests and larger rests. Some of the larger rests allow the idea to be further developed or other voices to be heard. For this reason, I don’t want to approach another large topic like yesterday. I want to wait until it feels right. Over the past 24 hours, I have been working on the next one and I was really excited about the topic. It was even really appropriate for what happened to me. I have yet to see this topic addressed but it doesn’t feel right yet. I am going to allow development of the previous idea and transformation. Soon…soon.

As patients with chronic illness, sometimes we find that rest is important for other reasons. Sometimes we take it so that we can just do something else. There are those things that we have in our bag that…

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