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Kim H, Ectopic Bio

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I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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In Memory: 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: 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

Jessica and Justin, Siblings In the Media

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From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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Laura, In The Media

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After years, mystery ills diagnosed

April 3, 2005
By JANET MARSHALL

On the day her life changed for the better, Laura Zastrow was exhausted. So much so that she almost didn’t go to the Quantico commissary, as she’d planned.

For years, Zastrow had felt run down without knowing why. One doctor chalked it up to depression. But that afternoon at Quantico, a stranger offered another diagnosis: Cushing’s disease.

Rare and often misdiagnosed, Cushing’s causes fatigue, weight gain, hair growth, mood swings, high blood pressure and other ills, all familiar to Zastrow.

The stranger, Jayne Kerns, recognized her own puffy face and hairy arms in Zastrow.

“I said, ‘I feel like I’m looking in the mirror,'” Kerns said.

Kerns encouraged Zastrow to check out a Cushing’s Web site, which Zastrow did. Every symptom listed matched her condition. Her doctor ran some tests, and the results confirmed Zastrow had Cushing’s, a hormonal disorder often brought on by a tumor.

The chance meeting in September 2003 transformed Zastrow’s life. In the months since, she’s had surgery to remove a large tumor on her pituitary gland and rediscovered her old, healthier self.

“My energy is coming back,” said Zastrow, of Locust Grove. “I’ve lost a lot of weight. I feel good. I don’t feel like I’m in a fog anymore.”

Kerns, of Spotsylvania County, has made it a mission to raise as much awareness as possible of Cushing’s since being diagnosed with the disease in 2000. She’s written President Bush asking him to declare a National Cushing’s Awareness Day in April.

Her meeting with Zastrow was first described in a Free Lance-Star profile of Kerns in 2004. At the time, nobody yet knew just how life-altering that meeting would be.

It emboldened Kerns to keep reaching out to people she thinks have the disease. And it gave Zastrow hope for a healthier, more energetic future.

“I was at the point where I was deteriorating so fast that if Jayne wouldn’t have approached me, I honestly don’t know what would have happened,” Zastrow said recently. “Obviously, I didn’t know anything about [Cushing’s], and neither did my doctors.”

For those with the disease, April 8 is the unofficial day to recognize it and the man–Dr. Harvey Cushing–who first put a name to it.

People with Cushing’s suffer from excessive levels of cortisol, the body’s stress hormone. The condition can be caused by long-term use of certain drugs, such as prednisone for asthma.

Often, Cushing’s stems from an overproduction of cortisol by the adrenal glands. The pituitary gland sometimes over-stimulates the adrenals, triggering the problem. Tumors on the adrenal or pituitary often are at the root of the problem, and treatment can involve removing the glands.

Kerns’ diagnosis followed months of maddening efforts to pinpoint why her body deteriorated, and never recovered, after childbirth.

She said she was misdiagnosed many times, and that one doctor, frustrated by her recurrent problems, told her he no longer had time to listen to her and referred her to another physician.

Kerns ultimately had her adrenal glands removed.

Each year, 10 to 15 people out of every million are thought to be affected by Cushing’s, making it highly uncommon.

“Doctors think that Cushing’s is too rare for people to have it,” Kerns said. “And I truly believe that it is not as rare as people think.”

Another local woman, Jennifer Belokon of Fredericksburg, has Cushing’s. She was serving in the Army in Iraq when she began feeling weak and gaining weight, adding 60 pounds in three months.

The Army flew her out of Iraq and sent her to Walter Reed Medical Center. After being diagnosed with Cushing’s, she had her adrenal glands removed.

“Now, I have no adrenaline, no steroids or anything that will help me produce that second wind when doing anything,” Belokon wrote in an e-mail.

Yet she’s resumed exercising and is training to run the Rock ‘n’ Roll half-marathon in Virginia Beach in September. She ran a 10-mile race a few months ago.

“My time was nothing big,” Belokon wrote. “But I was proud of myself for finishing.”

Getting treated for Cushing’s is life-altering, all three women said. Just finding out what’s wrong is profound because a diagnosis often follows months or years of mysterious and unsettling ailments.

“It changes people’s lives when they figure out what’s going on,” Kerns said. “It’s kind of like discovering that you have diabetes, and then you get insulin. You find something that’s going to make you feel better.”

For more information on the disease and its symptoms, which include purple stretch marks, check out cushings-help.com

To reach JANET MARSHALL: 540/374-5527 jmarshall@freelancestar.com
Copyright 2005 The Free Lance-Star Publishing Company.


JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.

Listen to CushingsHelp on internet talk radio

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Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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Ren, Undiagnosed Bio

6 Comments

 

Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

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