Suggesting Cushing’s to Others

This post at http://blog.dustincurtis.com/amateur-diagnosis-a-dilemma reminded me of a topic we often discuss on the message boards.

That post said:

I saw a woman at Starbucks earlier today who almost certainly has Cushing’s Syndrome, a rare-ish debilitating disease that is curable with treatment. It has some very clear physical signs, like a “moon face”, a hump on the back, and central obesity with normal sized extremities. The woman I saw might not know she has it; thousands of people live in misery with undiagnosed Cushing’s for years. It can be fatal.

What is the right thing to do in a situation like this? Do you tap her on the shoulder and kindly tell her your amateur diagnosis, possibly saving her life, or do you let her go on her way, potentially living in misery?

I stared at her for about 10 seconds, thinking about what to do, and then left without saying anything.

A diagram of some of the symptoms of Cushing's
Some of the symptoms of Cushing’s

So, if you saw someone with Cushing’s,what would *you* do?

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Some early responses from Facebook:
Would you tell a stranger they might have Cushing’s?

  • Yes!!!
  • I did…and it did not go over well. I recommended two ladies see an endo because they were obviously cushie. Both thought I was nuts and didn’t listen to me (that I know of.) One was a patient of my GI and she told me all her symptoms and it was classic Cushing’s-and she didn’t believe me. She told the doc I was nuts. I don’t know if I helped or hindered their quest for a diagnosis. It makes me think twice if I see someone that might have Cushing’s.
  • Well, I think what we have to consider is that it really doesn’t matter what they think of us. At least they have heard the word and maybe, just maybe, will investigate it more.
  • I know Jayne has had a lot of success talking to people she saw in the store. And, of course, Robin made us these wonderful cards. Scroll down http://www.cushings-help.com/documents.htm until you see “Spread The Word! Cushing’s Pocket Reference”

How about it?  Would you give someone a card or talk to them?

Cushie 12-Step Program

I “acquired” this from another site and changed the names to protect the innocent…

As you know many of us Cushies have had or have an addiction to Googling.

I suggest anyone who feels compelled to google symptoms go to the message boards to ask for support instead of typing these or any words such as “buffalo hump” in the google search engine. When this is done all roads lead to one thing…… You Eat Too Much!; You’re Depressed!

So, anyone who is about to hit enter on their computer which feeds their Google addiction…. go to the message boards to ask for help. One of the other Cushies who have achieved “Google sobriety” will help you down of the ledge.

1. Admit for now that you are powerless over your urge to Google.
2. Believe that a power greater than you (that would be other Cushies) can help you off that ledge
3. Decide to turn your “fingers” over to a higher power as you understand it.
4. Make a searching and fearless inventory of what you hope to gain from googling.
5. Admit to yourself and to another human being the exact nature of your addiction to Google.
6. Allow other Cushies to assist you when you are so scared you are thinking about googling symptoms.
7. Humbly ask for Xanax, Klonopin or Cortef in order to calm yourself from googling symptoms
8. Make a list of all the diseases you think you have or have had and survived and have a burning ceremony and then…. take a nap.
9. Cite all Google sites you have searched diseases on and delete them from your favorites/history.
10. When you start thinking….STOP….. do something else, like take an inventory of your test results.
11. Seek through prayer and/or meditation to improve your thought process. Do not travel to “OMG’ or “What if” land (this is a serious suggestion).
12. Having had a spiritual awakening as a result of these steps, carry this message to all your Cushie friends and anyone else you know who has a Google addiction.

13. Now I know there isn’t a 13th step, however, if you have noticed you are drinking too much wine or taking too many pills, please remember there are other 12 step programs for that, lol…

So, what about it – what are *your* suggestions to cure Google Addiction?

Cushing’s, Cancer and Other Serious Diseases

I was drawn to this blog post because the author mentioned that she had both Cushing’s and cancer, a kind of unusual combination.

1974 to Today: Seal it up
By Experience
I still haven’t heard what the consensus is on my aftercare: Cushing’s and Cancer. I don’t know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of
1974 to Today – http://1974totoday.blogspot.com/

I don’t usually comment on blog posts but I did on this one because we seem to share so much, disease-wise.

I said

Hi, I was drawn to your blog post because I have a blog with the same name, Cushings & Cancer.

I had my Cushing’s long ago and my cancer (kidney aka renal cell carcinoma) was 3 years ago but I sure know where you’re coming for.

My surgeon contacted my endo for the amounts of steroids during surgery (they came through the IV) then post-op, they kept cutting my dose in half until I was back down to normal.
Generally, you stress-dose after surgery if you feel like you have a flu coming on. Has your endo given you Cortef or another steroid to take for emergencies like this? Sometimes, they will give you an injectible to be faster acting.

Best of luck with the cancer surgery AND your Cushing’s.
MaryO

I sure hope that this isn’t a trend, Cushies getting cancer although I know of a couple others on the boards getting cancer.

I suppose Cushing’s doesn’t make us any more immune to other diseases but it seems like it should.

Haven’t we already “done our time”?

OTOH, I have a friend with a serious cancer (aren’t they all?)  who recently learned that she has a second, unrelated, cancer.  Makes you wonder sometimes.

What other diseases have you had in addition to your Cushing’s?

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