You Know You’re Chronically Ill When You…

Posted on December 17, 2025 by MaryO

…have a pajama collection.

…call the pharmacist and she recognizes your voice before you tell her what it is.

…are psyched to get a computer table tray for sitting in bed as a gift.

…find out that you can order a three month supply of meds online and you think it’s great.

…share and discuss journal articles with your doctor.

…have an inbox full of emails all from people with your disease or related to your disease.

…get updates from MedScape.

…set up your pills a month ahead of time in pill holders.

…have pill stashes in your car, purse, backpack, etc.

MaryO’Updates:

…have Dr F, Dr L and/or Dr IMMC on speed dial.

…bought a case of sharps containers on eBay.

…have a hospital bag always ready to go.

…have a “Got Hump” tattoo

…share pictures online of your stretch marks like they were badges of honor

…you know why there’s a zebra in my avatar

MaryOZebra

MaryO’Zebra

Added by Facebook friends:

…know approximately how much your urine output is in mL’s before you go because you’ve measured it so often before.

…When a specialists at a leading university hospital tells you “you are too complicated”.

…when multiple specialists at multiple leading hospitals tell you your case is complicated! (had to add to that!)

…when you only know the day of the week by your pill container!!

…when you get to park in the handicap spots and you’re only 25 years old!!

…you know to tell the person who’s drawing your blood to ice and centrofuge your vile for the ACTH test!!

…you can’t make plans beyond the next hour because you don’t know how sick you’ll feel!!

…when the most excitement you’ve had in a month is your drs appt! And you’re looking forward to your next appt so you can get out of the house!!

…When the people who work in the lab great you like Norm on Cheers when you arrive.

…When you know which vein is the “sweet vein.”

Feel free to add your own! 🙂

Filed under: Cushing's, General Health, Rare Diseases | Tagged: , , , , | 1 Comment »

Misconceptions About Cushing’s

Posted on December 14, 2025 by MaryO

Cushing’s.  So many people are confused by what it is and what it isn’t.  They may have heard of it because a dog they know has it – or, these days, a horse, ferret, rat.  Seems it’s way more common in lots of animals but not people.

If people have heard of the “animal version” they might say “Yeah, my dog had that and it was easy to diagnose. We just gave him medication…”

When we first started having bios on the website, sometimes people would say that they had Cushions Disease.  At first I wondered about that but then it started to make more sense.  If you’ve never heard of the disease,  the doctor mumbles something.  You know you’re a little “fluffy” and cushions makes a lot of sense.

Twice in the last week I’ve seen Cushing’s described as Crushings Disease.  That sort of makes sense, too.  Cushing’s crushes your plans, relationships, credibility, pretty much everything.

Other misconceptions involve Cushing’s symptoms.  Others, especially doctors, will see you gain weight and assume you’re eating too much and a good diet will fix everything.  Or see that you’re depressed (who wouldn’t be!) and offer anti-depressants.

Doctors may say that Cushing’s is too rare, that they’ll never see a case of it in their practice.  But rare doesn’t mean that no one gets it.  Rare doesn’t mean that doctors shouldn’t test for it.

Then, the anatomy just isn’t right.  People say that they have a brain tumor instead of a pituitary tumor.  I just read this on another site: The pituitary gland is on the bottom of the brain… Umm – not exactly ON the bottom of the brain but maybe close enough for people to get an idea.

What sorts of things about Cushing’s/Cushions/Crushings that just weren’t quite right?

Filed under: Cushing's, Rare Diseases | Tagged: , , , , , , | 1 Comment »

Suggesting Cushing’s to Others

Posted on December 6, 2025 by MaryO

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.

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

~~~~~~~~~~~~~~~~~~~~~~

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?

Filed under: Cushing's | Tagged: | 1 Comment »

Cushie 12-Step Program

Posted on December 4, 2025 by MaryO

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?

Filed under: Cushing's | Tagged: , , , | 3 Comments »

Cushing’s, Cancer and Other Serious Diseases

Posted on December 2, 2025 by MaryO

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?

Filed under: Cancer, Cushing's, Rare Diseases | Tagged: , , , | Leave a comment »

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