Cushing's is as bad as Cancer

As Cushies, we often struggle to let others know how poorly we are doing. How can they possibly understand when they don't know with Cushing's is?!

It seems in some people's minds, it's not as bad as cancer. Only cancer is as bad as cancer. That proves to be a very myopic perspective and limited understanding of all the diseases of the world.

Take Cushing's for example. We Cushies know the devastation we suffer physically, mentally, and emotionally from excess cortisol.

Cushies, we now have a tool to help us. The general population knows about cancer and multiple sclerosis. The authors of MANAGEMENT OF ENDOCRINE DISEASE: The Burden of Cushing's disease: Clinical and Health-Related Quality of Life Aspects compares these well-known debilitating diseases to Cushing's.

As you can easily see, untreated Cushies really aren't very well.

• Cushies experience a lower quality of life than cancer patients in these categories:
  general health, vitality, social functioning, and mental health.
• Cushies suffer equally with cancer patients in these categories: bodily pain, emotions.
• Cushies fair slightly better than cancer patients in this one category: physical.

Yet, where is the compassion? Where is the support? Where is the community to surround a Cushie and load them up with freezer meals and casseroles?

I don't take anything away from cancer patients. It is indeed terrible and life-threatening. However, they don't have the monopoly on suffering, and we Cushies wish people would stop trying to make us feel better by saying we don't have it as bad as they do.

The plain fact is that we Cushies often don't have a support community other than the ones we build to support each other online. "Cushies doing it for ourselves" is a great slogan, but we need the support of our loved ones, both family, friends, and coworkers. This makes the pursuit of Cushing's Awareness all the more important.

Day 5: Cushie Stories -- share your before and after photos

When I first started my blog in June 2009, I went through the painful process of posting photos that showed how Cushing's and high cortisol has changed me.

You can see the original post here.

So much has happened in the years. I will be working to collect some additional before and after photos to depict my life since my Cushing's discovery.

Will you help me help others by making one of yourself, too?

I'm working on a video presentation that will include these photos of Cushing's patients before Cushing's, during Cushing's, and after treatment for Cushing's. If you would like to participate, send your photos to me via email at moxiemelissa (at) gmail.com. I will compile submissions through the end of April. Those I receive before the month's end will be included, so please be sure to send them in soon. I have big plans for this presentation. I will share more in the coming year.

In addition, if you want to write your whole story up and include photos, please send it to me to the same email address. I want to share all kinds of stories from all kinds of Cushies, so please send me something so I can share with our community.

Take care. 

Moxie

A 'not-so-rare' story in the journey of a rare disease diagnosis

Thank you to Lisa for sharing her story in April for Cushing's Awareness Month and for highlighting the importance of finding support from other Cushing's patients.

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A 'not-so-rare' story in the journey of a rare disease diagnosis

By (BPT)

April 4, 2013 | (0) Comments

(BPT) - In the year 2000, Lisa Wollman, a young, vibrant woman in the prime of her life, was pregnant with her second child, and like many expectant mothers, was experiencing changes in her mood and body. However, she knew something was not quite right. Lisa started experiencing anxiety and insomnia, which had not occurred during her first pregnancy. After visiting multiple doctors, Lisa was told her symptoms would subside post-pregnancy, however several weeks after giving birth, she began experiencing other unusual symptoms, including excessive facial hair growth, acne and depression. These signs and symptoms prompted further doctor visits ultimately leading to the diagnosis of Cushing's disease, which affects approximately one to two people per million annually.

Read the full article by clicking the link below:

http://m.jsonline.com/sponsoredarticles/health-wellness/a-notsorare-story-in-the-journey-of-a-rare-disease-diagnosis8076300101-201503631.html

Cushing's Awareness Month: What People Need to Know

April 8th is Harvey Cushing's birthday. I pay hommage to the good doctor here, so I want to move on to my latest finds.

While I didn't get a chance to post here about Cushing's Awareness Day, I set the facebook world on fire with multiple posts to my 200 friends that day.

* This disease is so underdiagnosed and testing is so complicated, we should get a whole month!!

* Did you know that 40% of the tumors causing pituitary Cushing's do not show up on high resolution brain MRIs?

* Did you know that there is no one test that determines the presence of Cushing's disease? Did you know that doctors want to see many high cortisol values in many different tests (urine, saliva, blood) that are often 3 to 4 times the upper limit of the normal range? Plus, doctors think that a high test value is 'lab error' and often ask for more testing of the test that already showed an abnormal value.

* Did you know that countless patients who do not meet these extremely high diagnosis protocals are told to go home, diet, exercise, stay off the internet, and stop wishing a disease onto themselves?

* Did you know that nearly all these patients do indeed have a neuroendocrine disease, get treatment years and years after the onset of symptoms, and they never hear an apology or receive any sympathy from those naysaying doctors?

* Did you know that Cushing's patients are often isolated from friends and family, because most think patients are just fat, lazy complainers?

* Did you know that many Cushing's patients survive this debilitating disease mostly by relying on friends made through online message
boards? Thank you, MaryO, for creating and maintaining Cushing's Help & Support, a place that so many of us can call home.

* Can you imagine being sick with a terrible disease and being told that, essentially, it is your fault? We go home wondering why doctors think we have the power to change our body's malfunctioning parts. Can you imagining living with this nagging thought from medical professionals for over 1,000 days? I began my testing specifically for Cushing's over three years ago. I am still sick, and I am facing additional surgeries to cure my reoccurence of Cushing's disease.

* Many brave Cushing's souls shared their humiliation and frustration regarding symptoms, testing, doctors, and surgeries in radio interviews in hopes of helping someone who hears themselves in their stories. You can download these interviews for free on iTunes.

* 80% of The Cushing's patients are women. This disease causes unexplained weight gain, central obesity often with a buffalo hump at the base of the neckmenstrual irregularities, infertility, mood swings, body aches, depression, headaches, diabetes, high blood pressure, extreme fatigue, muscle weakness, and osteoporosis.

* Not all doctors were A students in medical school. Many were B, C and D students. In 2010, do you really trust that your doctor is an expert in every disease out there? Beware. Research. Self-advocate. Get smarter. Get additional opinions.

* Scientists are learning that Cushing's can be genetic. Jackie, a member of our message boards, was featured on the show Mystery Diagnosis, where she discussed the diagnosis of her daughter Sam. Since then, Sam's sister Jordan was diagnosed with Cushing's. Later at the NIH, the gene (P...DE11A) responsible for Sam's illness was found. Her father carried the gene as did her two sisters. Read more on Cushie.info.

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For those who are just researching Cushing's, I'd like to point you to one of my favorite posts on this blog: Tips to Steady your Feet & Diagnosed Quickly. Read it. Reread it. Remember it. Diagnosis is difficult. Living with this disease is more difficult. Make sure you muster up enough fight in you to save your own life.

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I recently found some very helpful information from the Seattle Neuroscience Institute's Pituitary Center. Dr. Ludlum discusses the basics of Cushing's, as well as the difficulties Cushing's patients face if the tumor is not completely removed in the 1st pituitary surgery. "When the 1st surgery is unsuccessful, Cushing's patients ultimately trade one disease for another."

You can see several videos describing the pituitary gland and Cushing's straight from the good doctor.

Dr. Mark Mayberg works alongside Dr. Ludlam and shares one of the best drawings I've seen to describe transsphenoidal surgery, the surgery commonly used to remove pituitary tumors.

Dr. Ludlum has published several Cushing's-related articles.

And for the Cushing's segment that led to the subtitle of this blog, I share Kate's story with you. Kate is a close friend and an inspiration to all of us with Cushing's. Kate is still fighting to combat the damage that years of excessive cortisol production has done to her body. She is a fighter, and she will win, like we all will. And in her famous words, Kate has taught me, and others, this keep word: ONWARD.