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In Memory: Janice, Tuesday, September 4, 2001

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in-memory

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: Diana Crosley

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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

In Memory: Patti

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in-memory

Thursday May 2, 2002

From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.”

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Surviving Cushing’s: Area woman hit by rare disease

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Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.

She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.

But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.

They were painful and she credits them for essentially saving her life.

“They were the ‘red flag’ that something was definitely not right,” Helton says.

She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.

Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.

As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.

That was the first time she had ever heard of Cushing’s disease.

Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.

In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.

“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”

Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.

Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.

In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.

The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.

After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.

Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.

It may take her longer to reach the top than most, but she has made it her goal to finish.

Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.

In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”

Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.

As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.

Even if there are no immediate answers, don’t give up.

“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.

“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”

via Surviving Cushing’s: Area woman hit by rare disease.

Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com

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Actor Chevy Chase’s shocking weight gain at the “SNL” 40th anniversary celebration has fans worried over his health. Chase, who has gained a significant amount of weight since 2013, may be taking steroids to cope with health issues.

Stephen Lovekin, Ilya S. Savenok, Frazer Harrison, Larry Busacca/Getty Images

“I am alarmed at what I saw last night,” plastic surgeon Dr. Ashakan Ghavami told Radar Feb. 16. “I doubt it was just weight gain. His appearance could possibly be due to steroid administration. This can come from autoimmune diseases or certain types of cancer. But it is unlikely purely weight gain.”

Dr. Ghavami, who has not treated Chase, said steroids and certain medications can cause bloating of the kind apparent in Chase’s puffy face. “There seems to be a buffalo hump on the back of Chevy’s neck and it is ‘cushingoid’ on his face,” said Ghavami.

Chevy May Have Cushing Syndrome

Cushing syndrome is a condition associated with prolonged exposure to high levels of the stress hormone cortisol caused by the long-term use of steroid medication. Symptoms of Cushing syndrome include obesity, a rounded face, increased fat around the neck, and fatigue.

Chase, 71, is significantly heavier than he was in 2013, when the 6-foot-4 comedian was lean and trim. Chevy’s dramatic weight gain caused Twitter to explode on Feb. 15 during the “Saturday Night Live” 40th anniversary TV special. As Chase was being interviewed on the “SNL 40” red carpet, fans tweeted their concern.

Read the entire article at Chevy Chase’s jaw-dropping ‘SNL 40’ weight gain caused by steroids, poor health – National Celebrity Fitness and Health | Examiner.com.

In Memory: Diana Crosley

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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

Jennifer (Jennifer In Puget Sound), Undiagnosed Bio

1 Comment

undiagnosed3I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.

Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.

Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.

During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.

 

What do you think?

Jennifer in Puget Sound

 

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