What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors’ notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video, he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Harvey Cushing (April 8, 1869 – October 7, 1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality.
Cushing’s name is commonly associated with his most famous discovery, Cushing’s disease. In 1912 he reported in a study an endocrinological syndrome caused by a malfunction of the pituitary gland which he termed “polyglandular syndrome.” He published his findings in 1932 as “The Basophil Adenomas of the Pituitary Body and Their Clinical Manifestations: pituitary Basophilism”.
Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.
Harvey Cushing (1869-1939) is considered to be the father of modern neurological surgery. In the early part of the 20th century, he developed basic techniques and instruments for operating on the brain and, as a result, founded the discipline as a distinct surgical speciality. Before Cushing began his career, brain tumours were considered to be inoperable, and the mortality rate for any surgical procedure which involved opening the skull was around 90%. Early in his career, Cushing dramatically reduced the mortality rate for neurosurgery to less than 10%, and by the time of his retirement in 1937, he had successfully removed more than 2,000 tumours.
Uh, Oh – I’m nearly a day late (and a dollar short?)…and I’m not yet sure what today’s topic will be. I seem swamped by everything lately, waking up tired, napping, going to bed tired, waking up in the middle of the night, starting all over again…and my DH was diagnosed with cancer which makes everything more hectic and tiring.
It’s been like this since I was being diagnosed with Cushing’s in the mid-1980’s. You’d think things would be improved in the last 38 years. But, no.
My mind wants things to have improved, so I’ve taken on more challenges, and my Mom and DH have provided some for me (see one of my other blogs, MaryOMedical).
Thank goodness, I have only part-time jobs (5 0f them!), that I can mostly do from home. I don’t know how anyone post-Cushing’s could manage a full-time job!
I can see this post morphing into the topic “My Dream Day“…
I’d wake up refreshed and really awake at about 7:00AM and take the dog out for a brisk run.
Get home about 8:00AM and start on my website work.
Later in the morning, I’d get some bills paid – and there would be enough money to do so!
After lunch, out with the dog again, then practice the piano some, read a bit, finish up the website work, teach a few piano students, work on my church jobs, then dinner.
After dinner, check email, out with the dog, maybe handbell, balalaika or choir practice, a bit of TV, then bed about 10PM
Nothing fancy but NO NAPS. Work would be getting done, time for hobbies, 3 healthy meals.
Just a normal life that so many take for granted. Or, do they?
From Danielle’s Cushing’s Awareness Challenge Blog
Social media dominates most people’s lives these days. You see what everyone you know is up to, but the problem is, most people only post about the highlights of their lives.
You don’t get to see the low points, the every day struggles. You don’t see what keeps them up at night with worry.
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 speciality 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.
I have often said, I wish I had cancer instead. Most people would not understand this sentiment, why in the world would you wish for such a horrible disease?
It is another common thread tying people with chronic illness together. If my disease was cancer, everyone would know what it was. I wouldn’t be questioned by my boss when I called in sick. My friends and family would be more supportive. My doctors wouldn’t question my symptoms.
“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.
Our mascot
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.
A zebra cup my DH bought me 🙂
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 possible 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 big 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.
One of my least favorite things about my life with chronic illness is having imaging appointments. Whether it’s my yearly brain MRI, or a chest X-ray, the whole process is uncomfortable, and sometimes even painful.
Usually, when a physician wants me to have imaging, they will schedule an appointment, usually the soonest available is a week or two out, sometimes more depending on the test. You usually have to arrive at the hospital 15-30 minutes before your scheduled appointment time, on top of that, there is typically a wait…
