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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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Port woman optimistic in fighting her ‘ugly disease’

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Anyone who knows lifelong Port Jervis resident Katie Onofry Sandberg knows that her upbeat personality does not let much get her down. Despite a life-threatening illness that she was diagnosed with as a teen, the cheerful young wife and mother says she loves life and is always aware that there are others who have it much worse. She is grateful for the support of her family, friends and community as she continues a strenuous course of treatment to fight the disease.

A benefit dinner attended by more than 200 was held recently at the Erie Trackside Manor to assist the Sandberg family with mounting expenses and to show support as Sandberg’s treatment continues.

Sandberg has Cushing’s disease, caused by a tumor on her pituitary gland, which releases too much adrenocorticotropic hormone throughout her body.

“I call this the ‘ugly disease’ because it causes major weight gain in your stomach and face, stretch marks, weak muscles, scarring, pigmentation issues, acne, increased facial hair, and loss of hair on your head,” Sandberg said. “The worst is when I have a hard time holding my baby girl, or not having enough energy to play with her. I do push myself, but majorly pay for it in the end. This can affect you emotionally and cause depression and anxiety, but I get a lot my optimism from my dad and have learned to deal with it.”

Sandberg said a biopsy taken during an eight-hour surgery in 1999 failed to find the tumor and caused her symptoms to spiral out of control. Extensive research and persistence on the part of her mother, Sue Onofry, led her to Massachusetts General Hospital. It was there that the disease was diagnosed in June 2001, the same month that then 18-year old Sandberg graduated from Port Jervis High School.

After successful transsphenoidal surgery a few months later, the tumor was removed and Sandberg was placed on steroids for adrenal balance.

“Seven years later, in 2008, I got off the steroids and was considered cured for the time being,” Sandberg said.

Over the next years, Sandberg earned an associate’s degree in business administration from SUNY Orange and CDA certificate from Keystone College, completed schooling in graphic design from the Art Institute online, worked in early childhood education and in public relations, owned Kate’s Cafe in downtown Port Jervis, married, and became a mom.

 

“I truly married my best friend. I had known Joe (Sandberg) since high school, but started dating in 2007 and married in 2009. They say you always marry a man like your father. Well, I definitely did in so many ways. He is so hardworking, supportive, and would do anything at all for his family,” Sandberg said. “Then, although I had been told that there was a high chance I would not be able to get pregnant, our miracle occurred. Ella Grace Sandberg was born on July 25, 2011.”

Over the past year, Sandberg’s symptoms returned. Cortisol tests came back in the 600s — a normal range is 18-50. In February, she underwent a second transsphenoidal surgery, which this time was unsuccessful. She was then placed on medicines to help regulate her cortisol levels. She will complete a six-week proton radiation treatment May 23.

“So far, the medicine treatment has been regulating me, which is great, and the radiation has a 95 percent success rate. The only hard part is that it is not immediate. It can take anywhere from one to ten years to work and kill the tumor cells. The key word with Cushing’s is patience,” Sandberg said. “About six months after treatment is finished, I will start testing to see if there is any improvement and to monitor my other hormone functions due to the effect of radiation on my pituitary gland.”

Having the young mom in Boston for so many weeks of treatment has been tough on the family. She said she greatly appreciates daily contact from her friends and family members, and is grateful that her daughter is being cared for by her husband, parents and in-laws.

“I could never have done this or continue to do this without them,” she said. “I am truly blessed.”

For more information on Cushing’s disease, Katie Onofry Sandberg recommends the Cushing’s Research Foundation  and she would be glad to answer questions herself at Kosandberg@gmail.com. She hopes that by sharing her story, she might bring awareness and possibly help for someone else.

From http://www.recordonline.com/apps/pbcs.dll/article?AID=/20140516/COMM011101/405160302/-1/NEWS

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