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In Memory of Kandace Bankston ‘Kandy’ Kline ~ September 9, 2007

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Kandy’s Story…

Hi, I am a 39 year old woman. I have a putitory tumor for the last fourteen years. the tumor has kiilled my putitory gland. I no longer produce any hormones. I have been on steroids for over fourteeen years and now my organs are getting damage from the steroids. The doctor say I will die if I take them I will die without them. Everytime they try to lower my steroids I catch a severe infection. I usually hospitalized every three or four months because my body won’t fight the infection so They put me in give me iv steroids and antibiotics.

I have gone down hill so bad in the last two years I can no longer work or even clean my house the doctor wants me to limit my walking to two hundred feet that is impossiable to do with children. this disease is so frustrating as no one understand what you or going though. My husband has done a lot of research on it and he a wonderful support system. I had a very hard time finding a doctor that can help me. I was hoping I could find someone to talk too that is going though the same thing.

I live in constant pain and now the depression is so bad. I try so hard to be upbeat for my family but it is a efffort to get out of bed. I am thinking about going to Nashville clinc or maybe the mayo clinc. If anyone knows about these clincs please email me K-K_Kline@hotmail.com I would very thankful for any suggestions.

Kandy passed away September 9, 2007

Kandy Klein long-time member of the message boards passed away September 9, 2007.

Information about services and donation information.

In Memory of Ryan Tyler Monds ~ September 4, 2016

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RYAN TYLER MONDS (FONZ) December 29, 1981 – September 4, 2016 Ryan passed away peacefully and is free from illness and pain. Heartbroken by his passing are his mother Anne (Dave); father Ron (Charlene); brother Cody; stepsisters, Emily and Grace (Kyle); and nephew Nathan.

ryan-mondsAlso mourning his loss are aunts, uncles, cousins, many life-long friends and friends through Cushing’s Disease Awareness.

Respecting Ryan’s wishes, there will be no funeral service. A private family interment will take place at Sunnyside Cemetery.

Donations to Siloam Mission in Ryan’s memory would be greatly appreciated.

Goodbye came too soon. We love you. Miss Me But Let Me Go When I come to the end of the road And the sun has set for me, I want no rites in a gloom-filled room, Why cry for a soul set free? Miss me a little, but not too long, And not with your head bowed low, Remember the love that we once shared, Miss me, but let me go. For this is a journey we all must take, And each must go alone, It’s part of the Master’s plan, A step on the road to home. So when you are lonely and sick at heart, Go to the friends we know, And bury your sorrows in doing good deeds, Miss me – but let me go.
As published in the Winnipeg Free Press on Sep 10, 2016

In Memory of Janice ~ Tuesday, September 4, 2001

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Tuesday, September 4, 2001

Double click to see these ribbons
used in Janice’s memory.

On the message boards, Lorrie wrote: Our dear friend, Janice died this past Tuesday, September 4, 2001. I received an IM from her best friend Janine, tonight. Janine had been reading the boards, as Janice had told her about this site, and she came upon my name and decided to IM me. I am grateful that she did. She said that she knew that Janice would want all of us to know that she didn’t just stop posting.

For all of the newcomers to the board that did not know Janice, she was a very caring individual. She always had something positive to say. Janice was 36 years old, was married and had no children. She had a miscarriage in December and began to have symptoms of Cushing’s during that pregnancy. After the pregnancy, she continued to have symptoms. When discussing this with her doctor, she was told that her symptoms were just related to her D&C. She did not buy this and continued until she received the accurate diagnosis of Cushing’s Syndrome (adrenal) in March of 2001. Tragically, Janice’s tumor was cancerous, a very rare form of Cushing’s.

Janice then had her tumor and adrenal gland removed by open adrenalectomy, a few months ago. She then began chemotherapy. She was very brave through this even though she experienced severe side effects, including weakness and dizziness. She continued to post on this board at times and even though she was going through so much, she continued with a positive attitude. She even gave me a referral to a doctor a few weeks ago. She was my inspiration. Whenever I thought I had it bad, I thought of what she was dealing with, and I gained more perspective.

Janice was having difficulty with low potassium levels and difficulty breathing. She was admitted to the hospital, a CT scan was done and showed tumor metastasis to the lungs. She then was begun on a more aggressive regimen of chemo. She was discharged and apparently seemed to be doing well.

The potassium then began to drop again, she spiked a temp and she was again admitted to the hospital. She improved and was set to be discharged and then she threw a blood clot into her lungs. She was required to be put on a ventilator. She apparently was at high risk for a heart attack. Her husband did not want her to suffer anymore and did not want her to suffer the pain of a heart attack and so chose for the doctors to discontinue the ventilator on Tuesday. She died shortly thereafter.

Funeral services will be on Tuesday.

Janice was our friend. She was a Cushie sister. I will always remember her. Janine asked me to let her know when we get the Cushing’s ribbons made as she and the rest of Janice’s family would like to wear them in her memory. She said that Janice would want to do anything she could to make others more aware of Cushing’s.


A Poem written in Janice’s Memory:

JANICE’s POEM

When I Am Done
When the leaves settle
Among the earths soil
Then will I find peace
For all my work and toil.

Know not I when it will be
But of its happening, it’s a certainty
For once sick in body
Though healed in time
Can never be wiped clean
Of the illnesses grime.

The stamp of death
Left upon this soul
Will never have reason to fear
It’s pearly gates that have come, for some
But for me only when I am done.

~Adrienne Lilley

Written in Janice’s memory, may she rest in peace always.

One thing about Cushings—I no longer fear death. But I sure do embrace life.

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In Memory of Dr. Edward Hudson Oldfield ~ September 1, 2017

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Dr. Oldfield was MaryO’s surgeon at the NIH November 3, 1987.  This was back in the olden days of transsphenoidal surgery.  I honestly expected to die but this man saved my life.

Dr. Edward Hudson Oldfield quietly passed away at home in Charlottesville, Virginia, surrounded by his family on September 1, 2017.

Born on November 22, 1947, in Mt. Sterling Kentucky, he was the son of Ellis Hudson Oldfield and Amanda Carolyn Oldfield. Ed is survived by his wife of 43 years, Susan Wachs Oldfield; a daughter, Caroline Talbott Oldfield; three siblings, Richard Oldfield of Mt. Sterling, Ky., Brenda Oldfield of Lexington, Ky., and Joseph Oldfield (Brenda) of Morehead, Ky.; nieces, Adrienne Petrocelli (Phil) of Cincinnati, Ohio and Keri Utterback (Brad) and nephew, Gabe Oldfield, both of Mt Sterling. His parents and a sister, Bonnie Lee Cherry, predeceased him.

Dr. Oldfield attended the University of Kentucky and graduated from the UK Medical School. He completed two years of surgical residency at Vanderbilt University and spent a year in Neurology at the National Hospital for Nervous Disease in London, England, before completing his neurosurgical residency at Vanderbilt University. After a year in private practice in Lexington, he completed a two-year fellowship at the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health in Bethesda, Md.

In 1984, he was named Chief of the Clinical Neurosurgery Section at NINDS and from 1986-2007, he was the Chief of the Surgical Neurology Branch at NIH. He joined the Department of Neurosurgery at the University of Virginia in 2007 where he held the Crutchfield Chair in Neurosurgery and was a Professor of Neurosurgery and Internal Medicine.

He led multidisciplinary efforts in the treatment of pituitary tumors and contributed to the research program in Neurosurgery at UVA. He often said it did not feel he was going to work because he so enjoyed every aspect of his career.

Dr. Oldfield was the author of over 500 original scientific and clinical contributions to medical literature and the co-inventor of patents on convection-enhanced drug delivery and genetic therapy. He served on the editorial boards of Neurosurgery and the Journal of Neurosurgery, where he completed a term of eight years as associate editor. Dr. Oldfield served as vice president and president of the Society of Neurological Surgeons (SNS). He received numerous awards including: the Public Health Superior Service Award; the Grass Medal for Meritorious Research in Neurological Science; the Farber Award; the Distinguished Alumnus Award, University of Kentucky Medical Alumni Association; the Harvey Cushing Medal; and the first annual AANS Cushing Award for Technical Excellence and Innovation in Neurosurgery.

In 2015 he received the Charles B. Wilson Award for “career achievement and substantial contributions to understanding and treatment of brain tumors”. A man of many interests and endless curiosity, Ed found joy in exploring the world around him with a great appetite for adventure, as long as it included variety and history. He preferred outdoor activities, and throughout his life enjoyed hiking, bird watching, photography and especially fly fishing, which provided the kind of peace he treasured in his limited free time. Learning was a priority in every activity. Ed was interested in genealogy and maintained a precise record of his family history, spending over a decade accumulating and scanning family photographs. It was important to him to know from where and whom his family originated. Though he loved to watch sports, especially the UK Wildcats, he did not always follow a particular team he cheered for the underdog.

His love of music was vast, from Arthur Alexander, Etta James, John Prine, Luciano Pavarotti, Van Morrison and Iris Dement, to name a few favorites. Friends and colleagues remember his gentle southern voice, particularly in his advice, “All you have to do is the right thing; everything else will take care of itself.” His family will remember him loving Shakespeare productions, a good barbecue sandwich, Ruth Hunt candy bars, a warm fireplace at Christmas and several beloved dogs.

A Memorial service was held on Monday, September 25, 2017, at the University of Virginia Alumni Hall at 4 p.m. In lieu of flowers the family requests donations be made to Edmond J. Safra Family Lodge at National Institutes of Health, Hospice of the Piedmont, or Piedmont Environmental Council.

From http://www.dailyprogress.com/obituaries/oldfield-dr-edward-hudson/article_3bb9df83-d223-5d26-81f4-cfd4565ee0c6.html

In Memory of Cassandra Dills-Dailey ~ August 29, 2017

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Casey Dailey, age 38, was fighting Cushing’s disease, a pituitary gland disorder often caused by a tumor creating excess cortisol. She had surgery Aug. 23 and went home the next day. Over the following weekend, she began feeling sick. She vomited, sometimes with blood. Then, she couldn’t stand or talk, relatives said. A high fever started Sunday, after floodwaters surrounded her home, and she became unresponsive.

In the midst of Hurricane Harvey, one family’s cry for help was particularly acute. It was a medical emergency.

Casey Dailey was recovering from surgery at home and needed an ambulance on Aug. 27.

But floodwaters had reached the doorstep of her northeast Harris County home between Greens Bayou and Sheldon Lake.

Her husband, Wayne Dailey, frantically called 911 that afternoon. The line was busy. He dialed more than two dozen times and got through. Help was on the way, he was told, but no one showed up that day or the next.

“That’s when I went to social media,” said Darlene Zavertnik, Wayne’s mother, who lives in Montgomery County. “I went on Facebook and put together a letter.”

Friends and relatives began sharing the post. A cousin called volunteers while Wayne tried 911 one more time and asked for an air rescue. He was told that they were already on the list.

“You don’t understand. She’s dying,” Wayne Dailey recalls saying.

Feeling completely hopeless, he saw some people trolling in a boat just after noon on Aug. 29. Wayne ran out in the water to flag them down. The crew turned out to be the famous civilian volunteers from Louisiana’s Cajun country.

“They came to the house and they got her in that boat,” Zavertnik said.

The Cajun Navy transported Casey Dailey to an airboat. From there, she was loaded onto a dump truck. Confusion about emergency medical sites led to a stop on the side of the road, which is when she stopped breathing, relatives said. An ambulance finally arrived and paramedics worked on her 15 to 20 minutes.

“They got her to the hospital and they just could not …” Zavertnik said, her voice trailing off into sobbing. “We just don’t want anything like this to happen to anybody like her again. There has to be a much better system for this.”

The Harris County Institute of Forensic Sciences recorded 4 p.m. Aug. 29 as the time and date of Cassandra Dills-Dailey’s death at a Humble emergency room. One week later, the cause and manner remains pending. She is not listed among the institute’s storm-related deaths, which all involve drowning or electrocution in floodwaters.

Casey Dailey was 38. The devoted mother had two sons, 14-year-old Luke and Ronnie, 10. She homeschooled the oldest.

She also reached out with kind gestures, such as crocheting baby blankets for strangers who were expecting.

“She was probably one of the sweetest, most loving people you’d know,” Zavertnik said. “She was just always wanting to do what she could to help people, make them happy and make them feel good. She was very special.”

Adapted from http://m.chron.com/about/article/Mother-of-2-dies-in-Harvey-during-medical-12175042.php#photo-14053540

In Memory of Jessica Lee Pierson ~ August 29, 2018

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Jessica Lee Pierson, 35, of Harrisonburg passed away Wednesday, August 29, 2018 from complications of Addison’s disease.

Jess was born in Fredericksburg on June 27, 1983, to Janet Pierson and her late husband, Charles Parke Pierson. Jess attended James Monroe High School where she was a stellar athlete and honor scholar. After graduating from James Madison University, she spent two years on the mission field in Peru, sharing her love for the Lord. Residing in Harrisonburg, Jessica excelled at her job as a social worker for Rockingham County and nurtured her clients with compassion, respect, and gentleness. She was an active member of Covenant Presbyterian Church, continually embraced by her family of faith who journeyed with her since her days as a college student.

Jess had a beautiful smile, and a sweet and simple demeanor that won the hearts of many, who even now are being inspired by her witness of faith. She was utterly devoted to and dearly loved by her close-knit family.

Survivors include her mother, Jan Pierson and husband Frank Graebner; brothers Daniel Pierson (Anne) and Christopher Pierson (Elissa); and sister Emily Moore (Michael). Her signature gift of loving thoughtfulness, especially in her role as “Tia” to her beloved niece and nephews, Mary Claire, Lukas, Nicholas, and Parke, overflowed through her kindheartedness, unselfishness, and generosity, and will never be forgotten.

Interment will be held at 10 a.m. on Saturday, September 1 at Oak Hill Cemetery. A service to celebrate her life will follow at 11 a.m. at Fredericksburg Baptist Church.

In lieu of flowers, memorials may be made to Missions Ministry of Covenant Presbyterian Church, 32 Southgate Court, Harrisonburg, VA 22801 or Fredericksburg Baptist Church.

From https://www.covenantfuneralservice.com/obituary?id=319105

In Memory: Kassey Whiterock ~ June 30, 2016

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The information I have is very sketchy.  I’ll update when/if I can find an obituary.


kasseyKassey passed away on June 30th. Her sister said she died in her sleep.

She was in the hospital due to an adrenal crisis on June 21, 2016.

I don’t know the exact cause or if she was still in the hospital.

She had surgery April 28, 2016 for blood clots.

Kassey was only 20!

From a GoFundMe page her sister put up.

Kassey Whiterock passed away June 30th in her sleep. If you knew her, you knew allow badly she was sick and in and out of the hosipital. My mother and I are the ones arranging her funeral cost and on top of the sadness of loosing her we are not worrying about how were going to do this. The plans are for her to be cremated and taken to Arizona where we have family and reservation. If you could please find it in your heart to to donate it would be greatly appreciated and one thing my mother and I do not have to stress about in this time of grieving .

Thank you all so much.
Help spread the word!

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In Memory of Kalyn Allen, June 28, 2017

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We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook:

This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.

Yesterday he posted:

Kalyn is in critical condition in the CV-ICU at St. John’s in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

Kalyn’s story from https://www.youcaring.com/kalynallen-786017:

My name is Kalyn I am 41 years old. I am married and have three children. In Nov ‘16 I was diagnosed with Cushing’s Disease.

My journey began in June ‘16 when I attended a health screening provided by my employer. It was discovered that my blood pressure was dangerously high and I was sent to my physician. I was prescribed blood pressure medicine. A couple of weeks later I joined a wellness program to turn around my exercise and eating habits in hopes that it would help me lose weight and lower my blood pressure.

Over the next few months I was seen by my physician numerous times. I was beginning to have strange symptoms. I was easily bruising. Dark purple stretch marks started to appear out of nowhere. I had hair loss on my head but excessive hair growth on my face. My ankles and hands swelled along with a loss of muscle mass in my legs, horrible acne and a shortness of breath. While my physician tried several different medications they were not alleviating my symptoms. At this point I was having trouble getting in and out of my car and the shower. I also started seeing a therapist because the excess hormones in my system were causing uncontrollable mood swings. During this time I was exercising and following the wellness program losing 52 pounds from June until the end of Oct. But there were still issues controlling my blood pressure. It was at this point that my physician referred me to an endocrinologist.

The endocrinologist ordered a multitude of tests to measure my cortisol levels as Cushing’s disease was suspected. To be thorough an MRI was ordered of my brain to see if they could find a tumor on my pituitary gland. This was done at the end of Dec. It was discovered that I had a 3.7 millimeter tumor on my pituitary gland. From there I was referred to a brain surgeon.

My condition continues to deteriorate as I am experiencing extreme fatigue, intense muscle and joint pain while having excruciating headaches almost everyday. Among other agonizing symptoms that complicate the situation.

I now have surgery scheduled for the first week of May ’17 to remove the tumor. I will be in the hospital for 3-7 days and my recovery time will be from 6-8 weeks. I will have to travel hours away to have the surgery and remain there during my stay in the hospital. My parents will be by my side during surgery. But unfortunately my children and husband will not be able to accompany me due to the expense and not being able to leave our farm animals unattended for that long.

During this time away from work I will be on short term disability. My employers short term disability plan only covers 80% of my wages during this time. This will result in my family undergoing a financial hardship as my husband and parents undertake the task of my care during recovery and attempting to cover the missing 20% plus extra expenses such as medicines and doctors appointments.

I am asking for your compassion and support to help my family and I through these trying times. This journey has been a roller coaster of emotions and physical pain for myself and my family. My Mother has been such a rock for me listening to me complain and cry. My Father has also been there for me always willing to talk and making me smile and laugh even if I didn’t feel like it. My Husband has taken over so much responsibility that was mine. And my children are always willing to help me out with the little things. It is frustrating going from being very active and able to do so many things I love to now only being able to go into the office to work several days a week and the rest of the week working from home doing little else because of the pain and the fatigue. I just want to get back to normal.

Update 5/3/17:

Kalyn’s surgery was very successful and the doctors said they where able to see and remove the tumor only taking 40% of her pituitary gland. She is in recovery now and will be in the hospital for the remainder of the week. She would like to thank everyone for their continuing support over the next few months while she recovers.

Update 5/4/17:

We got some bad news today. After removing the tumor along with 40% of Kalyn’s pituitary gland, her cortisol levels are still high, meaning there is still something else causing her cushings. So we are back to square one. Now we wait to see what the surgeons and the endocrinologists came up with. She is still in a lot of pain and exhausted because it is hard to sleep with all the packing in her sinuses. With this news she will probably have to stay in the hospital longer and may have to have another surgery to remove the rest of her pituitary if they can’t find anything else. The Dr’s may order a PET/CT scan to look other places for tumors but that may take up to 48 hours to get access to the machine.

Update 5/8/17:

Kalyn went in for a PET/CT scan this morning at 6:45 to look for any other tumors or cancer that could be causing the Cushing’s disease. Baring the scan finding anything, later this week the surgical team will go back in and remove the remainder of her pituitary gland. This will result in her being required to be on several medications the rest of her life. While removing the pituitary should solve the Cushing’s it opens the door to increased risk of complications and additional heath problems in the future. She will have to stay in the hospital much longer then anticipated and may have a longer recovery time. The children and husband where able go to OKC on Saturday to visited with her in ICU. This was the first time we have been able to see here in a week besides video chats. They spent several hours together and everyone enjoyed the short time with mom. Thank you Bob Eden for driving the family to OKC and for the pizza lunch everyone enjoyed. Kalyn remains optimistic and in high spirits considering the circumstances. She enjoys and appreciates all the kind words and support she has received though this difficult ordeal. The results of the PET/CT scan should come back quickly and we hope to not have to deliver any more bad news. This ordeal has been very stressful for her and the family and we are hoping for a favorable resolution soon. Kalyn and the family thank you for your continuing support and donations.

Update 6/26/17:

Kalyn is in critical condition in the CV-ICU at (hospital ommited) in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go.Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and husband are having to make daily trips into Tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.

In Memory of Kate Myers ~ June 23, 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.

 

In Memory of Samantha Cohn ~ June 19, 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.

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