Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
Have you checked out The Epic Foundation? I encourage you to do so. Cushie comrade Karen has dreamed of starting this non-profit to help Cushing’s patients and others with invisible diseases. In 2017, Karen debuted EPIC.
Please take a moment to read about EPIC Together’s Person of the Month, Alicia Held.
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.
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. This is the second one:
Robin Smith (staticnrg) hosted as Cushing’s message board members called in to talk about their fight for diagnosis and treatment. Robin opened the show with a brief explanation of what Cushing’s is and what the symptoms are.
“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”
Our “Official mascot” is the zebra.
In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.
According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.
The term derives from the aphorism ‘When you hear hoofbeats behind you, don’t expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore. Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.
By 1960, the aphorism was widely known in medical circles.”
Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist! Cushing’s is too rare – you couldn’t possibly have that. Well… rare means some people get it. Why couldn’t it be me?
Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.
I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.
Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.
I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.
Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?
Butterflies are something else again. I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a bit easier on the eye.
My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.
For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.
One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.
The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.
Shianne Lombard-Treman passed just three days ago. She had a form of Cushing’s Syndrome caused by adrenal tumors, and I am in remission from Cushing’s 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 Cushing’s Disease Awareness Month (and Adrenal Insufficiency Awareness Month – a common result from Cushing’s treatment). I had not committed myself to the annual blogger’s challenge, but the overflowing tears while I watched this video make me wonder if I should…