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Marie C (MarieConleyHbg), Pituitary/ BLA Bio

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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. In 2012, her focus was 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 focused in the arena of higher education. Marie continues with the national experts Stop It Now! on its Circle of Safety for Higher Education. ™

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 was unanimously granted Governor Emerita status by the Pennsylvania State System of Higher Education for her more than 13 years of service. Until she submitted her resignation in May 2016, Marie served as the Vice Chairman for the Board of Governor member of the Pennsylvania State System of Higher Education and was Chair of the Academic and Student Affairs Committee. She 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 and 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. She played a critical role on the Board of Lincoln’s Footsteps commemorating the 150th anniversary of the Lincoln’s Gettysburg Address. She continues to be a guest speaker and panelist on development and stakeholder engagement for a political and non-profit organizations.

But today Marie is facing her toughest battle yet. In 2012, Marie was diagnosed with Cushing’s Disease – a disease so rare it affects less than ten people per million each year. She has fought through dozens of hospital stays and numerous surgeries – including brain surgery – and still struggles daily to run her successful consulting business and a household that includes a husband and young son.

There’s a reason former Pennsylvania Governor Tom Ridge calls Marie “one of the most indefatigable people I’ve ever known.” Because while Marie drew the short straw in being one of those ten-in-a-million with Cushing’s, she has chosen not to simply live with the disease, but to use her skills honed in political campaigns to raise awareness and to fund critical research that will help those around the world who are living with this insidious disease. Already, The Conley Cushing’s Disease Fund has raised tens of thousands of dollars to fund research, to educate doctors on the signs of Cushing’s and to support her new book, A Cushing’s Collection.

Marie is not defined by Cushing’s. She is inspired by it to help others – and to leave a legacy of hope.
Marie hails from Bucks County, Pennsylvania; she lives in Elizabethtown, Pennsylvania with her husband, Chris Lammando, and their son, Carter.


The author of A Cushing’s Collection: A Humorous Journey Surviving Cushing’s Disease, Diabetes Insipidus, and a Bilateral Adrenalectomy is a member of the Cushing’s Help message boards.

From Amazon:

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.

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29 Years ~ Giving Thanks

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29-anniversary

Today is the 29th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 29 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.  Even though I’m now 10 years NED (no evidence of disease) from cancer, I still can’t go back on the GH.

During that surgery, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last year, I’ve developed ongoing knee issues.  Because of my Cortef use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on another blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days at http://www.maryo.co/

Xchicagoan (xchicagoan), Undiagnosed Bio

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golden-oldie

 

From Thursday, March 12, 2009

Hi there!

I’m new to the site, and quite frankly, new to Cushing’s Syndrome itself. Over the years I have been having what seemed to be a lot of unrelated symptoms, which are now escalating in intensity. And like most of you I have been from doctor to doctor trying to figure out what’s going on, with no success. What I find really scary is I’m now seeing uncanny similarities to the mystery illness that took my mother’s life. Out of frustration I’ve turned to the Internet for answers; starting by putting in different combinations of symptoms in hopes I would stumbled on to something conclusive.

It might seem pretty logical now, but I have been in a fog both literally and figuratively, never really looking at the “big picture”, since some of my symptoms were vague and generalized. Edema, hair loss, uncontrollable weight gain, etc., etc., etc.. Put those symptoms in and you get hundreds of different possibilities. And truth be told I had come across Cushing’s before, but I wasn’t convinced that was my problem. However, while surfing last night it occurred to me to include some family health oddities into the mix to see what I could come up with. The first one I started with was Adrenal Hyperplasia, and Bingo! I hit sight after site that described me, my mother, (dead at 61), and my niece (dead at 9), and I knew this was it.

So People of the Boards, where do I go from here? Over the years I have gone to two different Endocrinologists seeking answers, but because I have Hashimoto’s (Thyroid) Disease, both were convinced there was nothing else wrong. I am incredibly tired of wasting my time with doctors who are completely dismissive, and don’t take the time to look any closer than a few symptoms.

I’m turning to you, hopefully for some answers. If anyone knows of a competent doctor in the Huntersville/Charlotte, North Carolina area familiar with Cushing‘s, would you please respond?

Thanks for being here,
Xchicagoan

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Vicki (Pugmom), Steroid-Induced Cushing’s

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steroids

 

I am a recent transplant to San Diego and I am looking for a Cushings support group. I acquired adrenal insufficiency and Cushings about 3 years ago. I was given large amounts of steroids for numerous sinus infections, pneumonia, and bronchitis. I am 61.

I am trying to find an on-line or actual support group for Cushings folks or adrenal insufficiency. The last 3 years have been full of illness, numerous hospital stays, and a lonely road. I am tired of living alone with this health issue and would be happy to share my story with a group or others who have walked in similar shoes.

I take 25mg of hydrocortisone daily to maintain my current health status. I will check the message board for others like me and hopefully I can connect either in person or on-line with a group, I find that living with this health issue to be frustrating and at times depressing. I am trying to overcome being the disease rather than just a person who has Cushings. At times I just feel crummy for no other reason than my system is out of whack. I hope that I can find a group to be a part of and to hear their issues and offer any help I can from my experience. I am in the process of getting a medical team of doctors and see an endocrinologist in December.

This disease has had me on a roller coaster for 3 years. I don’t plan a lot of things ahead of the event since I never know how I will feel the next day. I am hoping there is someone else who has dealth with Cushings and what medications they are taking to make the disease manageable.
Thank you for reading this and offering any advice on locating a group with like health issues.

Vicki added a second version of her bio:

I have been living with adrenal insufficiency with a diagnosis of Cushing’s syndrome. I was diagnosed in 2012 and was told that I received this condition from having been given large amounts of prednisone for pneumonia, bronchitis, and sinus infections. I have no issues with my pituitary gland but I still demonstrate the same symptoms as someone with an official diagnosis of Cushing’s and live with taking steroids. I have the buffalo hump, the sweats, feel tired all the time, problems sleeping, moon face and weight gain as well as other symptoms. I have just moved to San Diego from Houston to be closer to our family. I am trying to find a group with the same type diagnosis or a group that I can be involved with to talk with. I realize that this condition is very rare and I am looking to be a part of a group where I can discuss the issues related with living with the diagnosis. I am very glad to have found this website where I am hopeful that there are others like me who also are looking for a group to discuss their issues.

It all started with a fainting episode in 2011. I broke my foot when I fell and saw a doctor the next day. I had been feeling so tired and sweating so much as well as having had the hump come up on my back a few years prior, which my doctor in Indiana didn’t think was anything but a dowager’s hump that could have been genetic.

I then became ill in 2012 with pneumonia and was hospitalized several times due to relapses of pneumonia and uti’s that put me in the hospital. I was having so much pneumonia and bronchitis on top of this other issues and was not getting any diagnosis other than adrenal insufficiency. in 2014 I had been hospitalized every month with one infection or another. My husband and I finally determined we were going to relocate to Houston, TX to see the doctors there. I was already on 40mg of hydrocortisone daily and still felt bad. I was almost gone on two different visits to the ER in Indiana and found myself on the floor unable to get up on one instance. I was on the floor unable to pull myself up for 7 hours in the dead of winter until my husband came home. I had renal failure and was not really expected to make it but I did. After a winter of these problems we decided that cutting off the hump on my back, as discussed by one doctor, was not the issue and we made plans to relocate to Houston in 2014.

I had a great team of doctors there and was diagnoised with Congestive Heart Failure, glaucoma, high blood pressure, high cholesterol, GERD, fibromyalgia, connective tissue disease, osteoparsis, adrenal insufficiency, and cushing’s syndrome.

I was in the hosptial with one infection or another for 1.5 years due to pneumonia that was caused by aspiration into my lungs. I had surgery, Heiller Myotomy in July 2015 and from that point the pneumonia has stopped. Thank God.

Since that time, we relocated to California to be nearer to our daughter and her husband and I have not had to deal with the pneumonia but till deal with the adrenal insufficiency and the Cushing’s syndrome.

Maybe someone has been though some of these same issues and would like to talk about what they are experiencing. I am willing to share my experiences also.

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In Memory: Barbara “Cookie” Rothenberg, Oct 11, 2003

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Saturday, Oct 11, 2003

The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002

From the posts on the message boards:

My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.


What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….


Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.


Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

We’ll miss you so much, Sweetie.


I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.


Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.

She will be sorely missed by all who knew and knew of her.


She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.


My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!


Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.

It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.


I think this fits Cookie perfectly:

Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same

— Anonymous

~~~

Cookie shared this poem  to show how she felt…

It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”

The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away

Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause

I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy

Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight

But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream

Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead

He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair

The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best

Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead

We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more

As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal

A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two

The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head

But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there

And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery

We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again

I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way

You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had

I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying

I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging

I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when

So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong

Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.

 

1955 and 1962 [Photographer: Cookie’s family]

1980-81, 3 years old, 2000 [Photographer: Cookie’s family]

2000 and 1998 [Photographer: Cookie’s family]

 

From the message boards thread about Cookie:

When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.

Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.

First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.

In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.

In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.

I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.

Then the recent surgery to install a dialysis shunt, infections, complications…

How much can one woman take? No wonder she was tired of it all 😦

No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].

I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.

I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.

Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.

Many thanks to Erin for this last look…


We’ll miss you so much, Sweetie.

Louise (Louise), Iatrogenic Cushing’s disease Bio

3 Comments

steroids

 

I am a 52 year old wife and mom of 4 who has had strange symptoms which will be a year this coming August.

My first symptom that I noticed as something strange was brusing beneath the skin on my left arm and then noticing that the skin easily tore. My doctor ran some bloodwork but still couldn’t figure anything out.

Later my best friend researched my symptoms and suggested I ask my doctor, which I did at my next appointment. Oddly at that next appointment the nurse checked my vitals and everything seemed ok. When the doctor came in I was leaning on my husband’s arm and my systolic # was 92.

From there he referred me to an endocrinologist. We discovered, after many blood test, that my issues were caused due to ACTH issue with my adrenal glands and that was caused due to taking varying amounts (usually 9 mg) of Entocort for around 12 years.

Now that I have been researching some of the symptoms I realize I have had them for at least a year. I have weaned down to 3 mg and want to get off of the Entocort but the doctor says that I will die if I just stop the medicine. I am due to have bloodwork July 13, 2015 and meet the doctor to discuss the results on July 23, 2015.

My FEET are killing me! I have felt SO alone and I am very thankful to find this support group….now I just need to learn how to use the message boards, so please pardon me if I flub.

Any help and advice is appreciated! Can this go away? I am PRAYING that it does!

Thank you in advance! Louise

~~~

update

Updated based on Louise’s comment.

My name is Louise. I am NOT a technogical person and cant seem to figure out how to get the most out of this forum, and I KNOW it is a good one. I desperately need contact with others who understand because they are going through this. Someone please tell me how? I just need some help. My bio says that I am “undiagnosed” but that is not longer true. The end of June I was officially diagnosed with “Iatrogenic Cushing’s disease”. I felt badly for 3 days, one of which was Father’s day and I was NOT going to the ER on that day. The second day I packed up a necessary bag, but still did not go to the ER. The third day I’d had all I could take and asked my husband to take me to the hospital. My stomach and my head hurt and had been hurting. The ER doc told me that my potassium and my sodium levels had bottomed out and that it could cause neurological damage and / or seizures. Scared me. I was admitted to the hospital for 4 days.

My Cushing’s was caused by long-term use of Entocort, or budesonide. No one could make sense of my “crazy bloodwork” because my cortisone level was “non descernable”, yet how was I alive? The second visit with my endocrinologist, just as she walked out the door, it hit me and I asked her if it could be the budesonide. She immediately recognized what was causing my Cushings. No one had picked up on the medicine because it was listed under the generic name and did not have a “cort” in the word of the generic. I have weaned completely off of the Entocort and it was not easy but I was determined. I have been on a maintenance dose of Cortisol beginning at 20 mg per day and I am not down to 15 a day. I want to go to a lower dose but need surgery on my thumb and so I know I will have to go back up to 50 mg for a while as I deal with the surgery. It will be the second surgery on my thumb, a surgery to correct the first surgery. Long story on the thumb, which I will skip….however, I originally messed up by thumb because I could not sleep. I asked my dr about Ambien and he said that would be good. I wanted to be sure it would not cause crazy behavior in any way, but once I took it, within 5 minutes (because I knew after taking the medicine I had to go immediately to bed within 10 minutes. I had a HORRIBLE fall and remember none of it. Once diagnosed with Cushings I realized that not sleeping, like for a day and a half being wide awake, was a result of Cushings.

My GI dr who prescribed the Entocort was kind and professional, truly caring but he didn’t ask me about ANY side effects, saying this drug was “the best” and that it really never had any side effects. I went in with skin on my arms so thin, brusied and bleeding, but he was only interested in the GI issues, even after I TOLD him I had Cushings. I finally had to tell him flat out that the Entocort he prescribed for me beginning 09/26/07 was what CAUSED my Cushings.

I ACHE, my lower back and feet, often my hands. It is hard to feel like an attractive woman when I am shaped like an apple with a moon-shaped face, but I decided I’ll just say heck with that…..there are other worse parts I am dealing with, yet, not being vain, that still matters to me self-esteem wise.

As I weaned from the Entocort my blood pressure went crazy up and down, but mainly high, which was some to begin with. Now it drops down and I feel like a wet rag. I am sleeping a LOT and when I get up during the night or in the morning I feel like I walk like Herman Munster. It is getting to me because it is hard to do things with my kids because I don’t have the energy or the ability to do things with them (the youngest 2 are 17 and 15 and they live at home. We also have a 22 year old and an almost 20 year old who are living on their own working, or on their own in college. I miss some things because I just “fall out, or hit falldown as I call it”. Maybe someone here can understand what I mean when I say I “hit falldown”. Others don’t understand. I have not told people in my community about my condition due to a former friend who is just plain nosey and called other friends to find out why I was in the hospital. I am not ashamed of the Cushing’s, but I don’t want to be gossip fodder either.

I did break down and asked my dr for a handicapped tag so that I don’t have to walk so far. I still have swelling in my legs, but hopefully that is better, but the pain is not. My balance is off and I have to steady myself when I stand up.

My cortizol levels have gone from “non descernable” to 2.4 to 4.3, so at least I am heading in the right direction. It is baby steps but I am thankful that it is going in the right direction, however slowly.

I would appreciate anyone getting in touch with me and have checked the “notify me of new comments via email box”. It is hard because people don’t understand and those I DO tell in confidence, I have a hard time describing it.

I don’t know that I used this forum correctly, but I am trying. Does anyone else have those “fall down” got to lie down NOW, moments where you lie down for hours? Somedays I feel like I get nothing done.

Thankful to have a place to voice my feelings. God bless each one of you. Louise.

 

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In Memory: Kate Myers ~ 2014

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kate-fbkate

Kate (Fairley on the Cushing’s Help message boards)  was only 46 when she died on June 23, 2014.  Her board signature read:

After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!

During her too-short life, she provided help and support to other Cushies.

Her National Geographic video in 2007

Her BlogTalkRadio Interview in 2008: http://www.blogtalkradio.com/cushingshelp/2008/07/17/interview-with-kate-fairley

Articles to help others:

Kate’s Family Letter
Kate’s Packing Suggestions For Surgery
Kate’s Pituitary Surgery Observations

Kate’s bio from 2008:

Hi y’all! I will try to make this short, but there is a lot to say.

I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.

At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.

Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.

Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?

Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.

At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.

At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.

Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.

At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.

Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.

So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.

By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?

Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.

I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.

In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.

But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)

Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).

Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.

When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.

Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.

Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”

Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?

I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.

I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.

So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.

And, I’ll keep you posted.

Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.

Be well, my new friends,
Kate

p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.

 

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