Sharmyn McGraw searched for answers for seven years for whatever it was that was killing her; finally she diagnosed herself via the Internet with Cushing’s disease, caused by a pituitary brain tumor. http://www.hormone411.org
Read Sharmyn’s bio at https://cushingsbios.com/2019/03/16/sharmyn-in-the-media/
Myth: “Cushing’s is RARE”, “No one has Cushing’s!”, “It is literally impossible for you to have Cushing’s Disease!”
Fact: We have all been guilty of referring to Cushing’s as a “Rare” disease. I*, myself, say this all the time. In fact, the statistics state that only about 2 in every million people are afflicted with this disease. However, these are documented cases.
In reality, Cushing’s is not as rare as we once thought. The fact is that Cushing’s is just rarely diagnosed! Non-experts tend to not test accurately and adequately for Cushing’s.
With an inappropriate protocol for testing, the prevalence of accurate diagnoses decreases. Cushing’s experts DO understand how extensive and difficult the diagnostic process is, so they tend to be more deliberate and thorough when exploring possible Cushing’s in their patients. Cushing’s patients who cycle also have to be more persistent in asking for adequate testing so that they are appropriately diagnosed.
The following video is an accurate portrayal of what many patients experience when trying to get help for their symptoms:
Please review the following links:
http://home.comcast.net/~staticnrg/Cushings/LimitationsSC_UFC_dex_mildCS.pdf
http://survivethejourney.blogspot.com/2008/11/new-research-has-shown-cushings.html
Read the whole article at  https://zebraontheside.wordpress.com/
Insomnia was one of the first things that troubled me enough to try to get help for with Cushingâs Disease. By my last year in music school, I had flipped my schedule around. I felt best and got more done if I practiced through the night and slept through the day. That year was wonderful for productivity because I was able to do what worked best with my body. A couple of years later, my sleeping problems had taken over my life. I was trying to get a diagnosis. In school for a second and third bachelorâs degree while working at Starbucks, I barely slept. Because I wasnât sleeping, I decided to just keep busy….
From Cushie Blogger Catherine in AKÂ
We lost a young woman with Cushing’s to suicide in 2014. There are rumors now that another recent loss was suicide as well. In my mind, regardless of what the exact cause was, Cushing’s is at fault. Cushing’s led them to their deaths just as surely as if it had struck the death blow itself. If that is hard for you to fathom, then please allow me to educate you briefly on this dastardly, “most morbid of diseases” and why I feel the way I do.
Read more at https://muskegfarm.blogspot.com/2018/04/digging-deep-depression-anxiety-and.html
From Cushie Blogger Catherine in AKÂ
Shianne Lombard-Treman passed just three days ago. She had a form of Cushingâs Syndrome caused by adrenal tumors, and I am in remission from Cushingâs Disease caused by a tumor on my pituitary. My heart aches thinking of Shianne and all those we have lost in the last few years. Today marks the start of Cushingâs Disease Awareness Month (and Adrenal Insufficiency Awareness Month – a common result from Cushingâs treatment). I had not committed myself to the annual bloggerâs challenge, but the overflowing tears while I watched this video make me wonder if I should…
Read more at https://muskegfarm.blogspot.com/2018/04/another-loss-just-as-cushings-awareness.html
Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
MaryO kicks off Cushing’s Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven’t been tested this way.Â
From http://cushingsmoxie.blogspot.com/2017/04/day-1-blogging-with-cushies-featuring.html?m=1
Since no other people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
From Danielle’s Blog at http://www.lifewithcushings.com/
Today, I’m going to be talking about my Cushing’s story, which still continues, even 8 years after I was diagnosed.
I remember the moment I realized something wasn’t right. Â My mom was taking me to the mall, because none of my jeans fit me anymore. Â She was talking about how she wished I would try to lose weight, because she has been overweight most of her life, and didn’t want that for me. Â But, I needed pants to wear to school, so I bought another size up. Â I remember thinking, nothing has changed. Â I didn’t eat more, or less, I hadn’t stopped any activities. Â Maybe this was just my metabolism slowing down.
Read more here: http://www.lifewithcushings.com/
And today, we talk about pink jeeps and ziplines…
How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL
I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006. Â I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006. Â My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.
I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.
An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and decorated her and had her pose around the ship.
The beginning text reads:
Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!
Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.
On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?
Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August 2006. Â I convinced everyone that I was well enough to go off-road in a pink jeep, Â DH wanted to report me to my surgeon but I survived without too much pain and posed for the header image.
In 2009, I figured I had âextra yearsâ since I survived cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldnât go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.
Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.
We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldnât get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didnât have cave pictures or T-Shirts. What a missed opportunity!
This was so cool, so much fun. I thought I might be afraid at first but I wasnât. I just followed instructions and went.
Sometimes they told us to brake. We did that with the right hand, which was always on the upper cable.
After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldnât figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.
After that, no more problems with braking!
The next platform was very high â over 70 feet in the air â and the climb up was difficult. It was very hot and the rocks were very uneven. I donât know that I would have gotten to the next platform if Michael hadnât cheered me on all the way.
We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.
But, I did it! No fear, just fun.
Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. Â This is the first one:
Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/01/03/mary-oconnor-aka-maryo-cushings-helpcom-founder
Some of the comments:
This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!
Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!
The information age and innovative thinking meets new medical needs
Great show. informative and potentially life saving
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