A Cushing’s Collection
A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy
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Hey, all! First, thank you so much for calling and emailing about my appointment on Friday. I am sorry I have not been more responsive and am just getting back to all of you now, but I think you'll be pretty interested to read this latest post.
I spent two hours with the endocrinologist (fourth specialist since February) from the University of Pennsylvania on Friday afternoon. She was very kind and thorough; she reviewed all of my paperwork and did an examination. She was not able to say conclusively one way or another what the heck this is. However, what I am being tested for this week is called Cushing's Disease. I will have a series of tests that will determine if this is what I have; results will likely take three to four weeks.
I am not going to focus on what could or could not be until I get the results. I will share, however, that this is the first thing that makes sense. Of the 11 most prominent symptoms, I have at least nine of them. While I have not been nuts researching, everything is pointing to this.
Just as an aside, of course, I will probably have the disease with the symptoms called "Moon Face" and "Buffalo Hump!" For the record, "Moon Face" is a swollen face - more prominently bloated under the chin in the neck region (for those of you who haven't seen me lately I look like the Stay Puff Marshmallow Man from Ghostbusters) and "Buffalo Hump" is a collection of fat on the back at the base of the neck. Ladies, watch your men - I am very sexy right now!
Other goodies include: Increased weight gain (19 pounds since March 1 even though I have been working out six days a week - did a 10K race and a sprint Triathlon and eating #(*@&#(@ red peppers and carrots for dessert), red face, acne, abdominal swelling, and bone thinning (had the stress fracture and now have another tear in my hip) - just to name a few.
The most important thing is, if this is Cushing's Disease, it is not hereditary and Carter is fine and will never get what I have! While I am still uncomfortable, I am not in pain and can take care of Carter, Chris, our home, and my work. I am very lucky that I have my dad's tenacity and I will fight hard until I have all the answers!
I am just so grateful that there may finally be a light at the end of the tunnel after 12 months.
I can't thank all of you enough for your friendship and thoughts. Please understand if I am not the most visible person in the next couple of months; I am honestly not very comfortable being in public. I really don't look like myself.
I have not shared this with a lot of people so I would appreciate that, until I know something, you not share this with anyone (unless you overhear someone say "OHMYGOD, did you see how big Marie Conley got?" Then I am totally comfortable with your printing out this email and sharing it!!! - just kidding (not really)! I promise to keep you posted when I hear something.
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About the Book
Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.
In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.
Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error. At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.
Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.
About the Author
Marie Conley is a consultant focusing on engagement and stakeholder strategies and fund development for a variety of clients through her company Conley Consulting, LLC.
During her tenure in politics (1994-2009), Marie was a trusted advisor to top-level government officials and private sector organizations beginning in 1994 as the scheduler to Governor Tom Ridge. In 2009, as a senior level fundraiser, strategist and event planner, she made a successful transition from Pennsylvania’s highly competitive political landscape into the equally challenging field of non-profit development as director of Penn State Hershey’s Children’s Miracle Network. Since 2012, her focus has been working with Sue Paterno, wife the late Coach Joe Paterno, to assist with a number of initiatives around the issue of prevention and awareness of child sexual victimization.
Marie never takes any professional or personal task at face value. She is always looking for ways to improve efficiencies, outcomes and most importantly calls upon herself and those around her to do the right thing for the right reasons. Her accomplishments in such a short period of time at Children’s Miracle Network are only one example.
Marie serves as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education. She is Chair of the Academic and Student Affairs Committee and has spearheaded significant changes in policy regarding the recruitment and hiring practices for university presidential and chancellor searches and has re-evaluated and changed the policy for university presidential evaluations. Marie was first nominated in 2002 by Governor Mark Schweiker; was re-appointed by Governor Ed Rendell in 2004 and re-appointed by Governor Tom Corbett in 2012. From 1997 to 2011, Marie served as a Council of Trustee for her alma mater, Bloomsburg University of Pennsylvania. Marie volunteers at St. Joan of Arc School.
In 2012, Marie was diagnosed with a rare disease called Cushing’s disease. Cushing’s disease is so unusual that it affects less than ten people per million each year. On July 17, 2014, The Conley Cushing’s Disease Fund was established and is a project of The Foundation for Enhancing Communities, fiscal sponsor. The funds raised will be used in part to create awareness materials for loved ones who are suffering from this disease as well support institutions and organizations focused on issues surrounding Cushing’s disease. She has committed her talents and gifts to raise money and awareness for those with Cushing’s disease and complications from the disease.
Marie hails from Bucks County, Pennsylvania; she lives outside Hershey, Pennsylvania with her husband, Chris Lammando, and their ten year old son, Carter.