Emily Post for Cushing’s, Part II

“5. “I wish I could stay home and sleep all afternoon/I wish I could take a few months off work/I don’t have the option of staying in bed – I have children” or anything in that genre. This one kind of follows the same theme as the others. I didn’t stop working because I had the luxury to do so. I got a call from my boss one evening and was told I was being taken off a case because I was too sick to go to the office and I was trying to meet a deadline by working in three hour shifts from my bed around the clock. I didn’t choose to sleep all day or choose to not get out of bed – if you get sick enough, your illness takes those choices away from you…”

attot's avatara tale of two tumors

This post is a continuation from Part I and covers what to say (or not say) when trying to be supportive to someone in your life that is struggling with Cushing’s or another serious illness.  Part II, below,  focuses on the topics of giving advice and commiserating with someone suffering with Cushing’s.

4.   “Oh, I know all about how bad hormones are – I had wicked PMS last week!”  or “Oh, I know all about exhaustion, my [kid, job, etc.] kept me up all night too!”   You may understand how PMS or sleepless nights for work or a child may feel.  That does not mean you understand how it feels to have a brain tumor pump high levels of hormones into your bloodstream and to have no idea if and when it is ever going to stop.  Attempts to commiserate by comparing the two can give a person with…

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Day 4: Cushing’s Awareness Challenge 2015

 

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.

 

Cushing’s Awareness Month Day 3: Relax, Part Two.

Hopefully the tips and tricks I borrowed from Greatist.com yesterday helped you take a break from reality and relax. If not, here are more tips and tricks to help you stay focused, stay calm, and stay healthy.

via Cushing’s Awareness Month Day 3: Relax, Part Two.

Life Changing

Life changing…what does that mean.? Obviously those diagnosed with Cushing’s Disease are going to have to deal with a lot of things that others do not even have to consider…

via Life Changing.

Emily Post for Cushing’s, Part I

This post is the product of personal experience and many conversations I have had with other people struggling with Cushing’s or other illnesses. It is really meant to be helpful and to simply give you a little insight into how a statement that is coming from a supportive place may actually not be received that way. So, with that caveat in mind, here we go!…

attot's avatara tale of two tumors

I saw this article on my FB feed the other day entitled “12 Things You Should Never Say To Someone With A Chronic Health Condition” and it really resonated with me:

http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

So many of the statements on the list do come up on a fairly regular basis and I could see how the person making the statement was trying to be supportive while the person on the receiving end just ended up feeling invalidated.  After reading this, I thought it might serve as a great topic for an “awareness” blog post but I also felt a little hesitant to actually write the post.   On one hand, I think the information could be helpful; on the other, I sincerely don’t want this to feel like a public shaming 🙂   This post is the product of personal experience and many conversations I have had with other people struggling with Cushing’s or…

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