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Joyce P, Cyclic Cushings

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I was a member here a couple of years ago and told I may have Cyclic Cushings.

I went 2 weeks ago today to LA to see Dr. F and he suppects Cushings and HGH defiency.  I have not started all of my testing yet as insurance has been a problem, but I am going to my Internist tomorrow and see how he will help me.

I will update as I can and apprciate any information.

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In Memory: Bonny Hamm

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I did not know Bonny personally but she was an Australian  member of the Cushing’s Help message boards who rarely posted.

She was only 45 at the time of her death October 12, 2009.  I’ve known far too many Cushies who have died far too young from this disease.

Bonnie’s Avatar

Bonny wrote July 1, 2009

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumour… on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don’t know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.

As a single parent, (divorced), life is very hard with Cushings as you don’t have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.

Before and after Cushings

Before and after Cushing’s pictures.

Rest in peace, Bonny!

Beth said it best on Facebook

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

In Memory: Millie Niss ~ 1973-2009

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Millie is the first Cushing’s patient that I know of to have died from complications from Swine Flu.  She was only 36 – how sad.

Millie Niss (1973-2009)

We were saddened this past week to learn of the passing of Millie Niss, the Buffalo-area-based poet, writer, digital artist and web-based installation designer, who died Nov. 29 of complications of Bechet’s Disease, which she had battled for nearly two decades, and the H1N1 virus, which she had contracted four weeks earlier.

She was just 36 years old.

There are only a few people one ever meets in life for whom the description “savant” might apply, but Millie was one of them. An award-winning, Columbia University-trained mathematician, she published papers and original proofs in professional journals while still an undergraduate, but saw her very promising academic career foreshortened by the early onset of a rare vascular autoimmune disorder — later diagnosed as Behcet’s Disease — that would eventually take her life.

With an indomitable intelligence and a fiercely competitive spirit, she approached her progressively worsening condition with courage, wit and a highly focused agenda of things she wanted to  accomplish.  Over the past decade and a half of her life, she turned to writing, digital art forms and a variety of web-based media forms to express the full gamut of ideas and emotions that still roiled inside her. Much of her work can be found at Sporkworld.org — the web site she created in 2000 — and her Sporkworld microblog — since 2002, a collaboration with her mother, the poet and author Martha Deed.

While her health prevented her from extensive travel, or even attending many events in the city in recent years, she remained a vital presence at many literary events in the Northtowns, including at the Screening Room in Amherst, Just Buffalo’s Literary Cafe at the Center for Inquiry, and Carnegie Art Center in North Tonawanda, where she lived.

Her last project and public event was at the University at Buffalo’s & Now Conference on Post-Modern literature and digital experimentation in mid-October, where she was among the writers and web artists chosen to present their new work at Hallwalls Cinema by a juried panel. Traveling with an oxygen tank and in a wheelchair, she was able to deliver her complete program, which was well-received by her peers.

Shortly after the conference, Millie developed a confirmed case of the H1N1 virus. She spent 29 days in the ICU of Millard Suburban Hospital before dying of complications of the flu, compounded by Behcet’s Disease and Cushings Disease.

Like many of the poets we’ve published in The Buffalo News with some regularity over the years, I knew Millie better from her work than from the handful of occasions we met at readings or other literary events over the years, but I can unequivocally say that her work had rhetorical propulsiveness: it was urgent, driven, sometimes whimsical, sometimes indignant, but it always seemed to jump up off the page at you.  Our conversations were always cordial, but I sensed that she wasn’t a woman who suffered fools gladly.

She bristled with the kind intellectual energy that you typically find in polymaths, and if that intelligence occasionally expressed itself with more than a hint of impatience, you got the sense that deep down she knew that her time to leave her mark on this world was limited. Her work was edgy, provocative, probing, ironical and never boring.

Some of her strongest work was too personal in tone for us to use in what is essentially the public literary space of a newspaper poetry forum, but I admired it nonetheless. We published at least four of Millie’s poems over the years on The Buffalo News Poetry Page, but much of her recent work was designed specifically for the web.

The fact that she achieved as much as she did during her brief lifetime lived under such difficult physical constraints is a testament to her boundless spirit, and a reason we can all celebrate her life.

–R.D. Pohl

From http://blogs.buffalonews.com/artsbeat/2009/12/millie-niss-19732009.html

In Memory: Thomas F. Zachman ~ 1950-2010

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Thomas “Tommy” F. Zachman, of Windsor, formerly of Toledo, Ohio, died suddenly and unexpectedly at University Hospital in Denver on June 3, 2010, complications of Cushing’s Syndrome.

Tommy was born Sept. 3, 1950, in Toledo. He was a graduate of Rogers High School and the University of Toledo and the University of Toledo Law School. He practiced law in Ohio. Most of his career was spent with West Publishing in Cincinnati which enabled him to enjoy extensive travel throughout the United States. He left his position at the company when it was sold.

He was an animal lover and always enjoyed his family dogs. He also enjoyed cycling, music, college sports and reading. Tommy was always available to help others with their problems.

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