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We Have a New Bio Form!

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We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

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In Memory: Samantha Cohn ~ 2014

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in-memory

A Pilates instructor who suffered from a rare disease leaped to her death Thursday from her Upper West Side apartment — nearly crushing a horrified passer-by on the street, cops said.

Juilliard graduate Samantha Cohn, 34, crawled out a window in her 16th-floor apartment at West 71st Street and Broadway and jumped at 10:10 a.m.

Cohn, who was wearing workout clothes, landed on the sidewalk on Broadway and nearly hit a neighbor, Matt ­Kovary.

Her mother told investigators she had been diagnosed with Cushing’s syndrome, police sources said.

Cushing’s syndrome is a disease caused by exposure to high levels of cortisol. A tumor grows in the pituitary gland and causes serious side effects.

“I thank God for sparing me because I would be dead, too,” said Kovary, 59, who was on his way to the Upper West Side Copy Center on Broadway. “I heard a loud explosion. It was right behind me.

“I turned to see what the explosion was. The sight was so horrific. She was just at my feet. She almost took me with her.”

Stunned, Kovary headed to church after the tragic incident and prayed for the pretty victim.

“I’m so shaken from it. I went to church twice and prayed to God to save her soul. I could have been dead, killed an hour ago,” he said.

Cohn had gone missing for a week in April, prompting her worried mother to search for her and alert authorities, said a worker at her building.

“They found her in the hospital, supposedly for heat exhaustion,” said a doorman, Jacques Tassy. “When she came back [home], she seemed different. She wasn’t smiling as much.”

A woman who had been checking on Cohn regularly showed up on Thursday — 30 minutes after she had jumped.

“It wasn’t Samantha Cohn, was it?” the woman wailed. When she found out it was, she burst into tears.

The beautiful brunette spent more than 10 years as a professional dancer before teaching Pilates at Back in the Game Therapy near Rockefeller Center, according to the center’s website.

From NY Post

If someone you know exhibits warning signs of suicide: do not leave the person alone; remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt; and call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255) or take the person to an emergency room or seek help from a medical or mental health professional.

In Memory: Diana Crosley, June 18, 2014

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diana2003a

Portland, OR, Cushing’s Conference, October 2003, Day 2, at a “House of Magic” dinner.

diana2003b

Portland, OR, Cushing’s Conference, October 2003, Day 3. It was very windy on the Oregon Coast!

diana2005

Brighton, MI: Cushing’s Weekend, October 2005

diana2007

Columbus, OH Cushing’s meeting, 2007

Diana’s official obituary from Adams Funeral Home:

Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family.  She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.

Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.

Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.

Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.

The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.

Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.

Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.

Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.


Diana’s Cushing’s Help bio:

As with everyone who suffers from this disease, mine is a rather long story.

In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.

Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”

At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.

Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.

Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.

I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.

Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.

I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.

I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.

When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.

I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”

It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.

Thanks for the support and I would welcome input from anyone.

Diana

Update January 28, 2011

It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol

Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.

In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.

To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.

You can and will get through this, your life is not over.

Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time

Much love to all
Diana

Interview Archive: My Journey | Living with Cushing’s Disease

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It’s hard to say when my exact “journey” began with what we now know is Cushing’s Disease.  Both my Mom and my doctor believe I’ve had this for years, when I started having period problems, migraines and unexplained weight gain in high school.

I can safely say that I started really noticing/documenting this last round of health issues in the spring of 2007.  I can remember my first doctor’s visit regarding the onset of this in spring 2006, but the majority of my health issues really began a year later.  I’d always suffered from migraines, but only around my menstrual periods.  I took birth control to help with that, and it also helped regulate my periods for the majority of my adolescent and young adult life.

In Spring 2007, however, I started experiencing cluster migraines that were debilitating, blinding and just absolutely horrible.  I don’t usually have a primary care physician because I’m, for the most part, a really healthy girl.  But I started seeing a doctor to pinpoint the cause of the migraine headaches.  I had a CT scan which came back negative for any problems.  I tried different abortive medications to treat the migraines when I had them (Imitrex) and also preventive medications (Topamax) but nothing helped.  I’m not a big fan of popping pills and insisted that I find the cause of the migraines, rather than just masking them with an expensive, non-generic daily pill.  I cut back on caffeine, avoided certain trigger foods, changed the lighting in my house and in my office, had my eyes checked and even experimented with different birth control options, since estrogen can be a huge trigger for migraines in women.  Those lifestyle changes helped a little, but I was still having them.

Read more at My Journey | Living with Cushing’s Disease.

interview

Rachel was our guest in an interview on BlogTalk Radio Wednesday, June 3 at 6:00 PM eastern.

The archived interview is available through iTunes Podcasts (Cushie Chats) or BlogTalkRadio.

 

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In Memory: Thomas F. Zachman ~ 1950-2010

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in-memory

 

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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Ida, Cushing’s Video

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Cushing’s syndrome is a rare disease which affects 65 patients in one million inhabitants of the EU. Cushing’s syndrome is a state where the body is chronically exposed to a high concentration of cortisol.

The signs of the disease are often overlooked. It took 14 years to diagnose Ida with the disease and to start treating it successfully. On Cushing’s Awareness Day, Ida emphasizes the importance of communication between the patient and the doctor.

Lili, Undiagnosed Bio

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58 yrs old
have every symptom

blood work 9.86
midnight saliva 0.27
urine not back yet

history: total thyroidectomy 10 yrs ago
cancer free of thyroid for 10 yrs

 

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Cynthia M, Undiagnosed Bio

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I am currently being tested for CD because after exhaustive research on AVN (Avascular Necrosis) related to other diseases. I have four known areas of AVN & after seeing the symptoms of CD, I realized may have this.

I also have numerous other diseases Lupus, Sjgrens, Hypothyroid, High BP, Arthritis, Fibromyalgia…

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