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In Memory of 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

In Memory: Diana Crosley, June 18, 2014

Leave a comment

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

Sahana (Sahana), Adrenal Bio

1 Comment

 

My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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In Memory: Diana Crosley

1 Comment

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

Mary (Mary), Pituitary Bio

Leave a comment

golden-oldie

 

I am 38 and had three transphenoidal surgeries for Cushing’s.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing’s so I went on to have a laproscopic adrenalectomy followed quickly by galbladder problems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

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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

Liz D, Adrenal Bio

2 Comments

golden-oldie

 

Hi my name is Liz and I underwent a laparoscopic adrenalectomy 5/9/12 to remove my 3cm tumor that was releasing high doses of cortisol causing cushings syndrome for what I believe has been about 3-5 years now.

I was diagnosed with PCOS about 5 years ago so everytime I went to a Dr. complaining of my symptoms they blamed it on the PCOS and stress and sent me home.  I knew there was something else wrong, the symptoms didn’t add up, my face would get SO red it was embarassing, I would sweat through my clothes 2-3 times a day, my face became puffy, I would gain weight despite healthy eating and working out like crazy, I was anxious, depressed, I never slept, it didn’t add up.

Luckily I am a physician assistant and remembered learning about cushings briefly in school.  I read that most tumors were in the pituitary gland so a year ago I convinced my Dr to let me get an MRI of my brain to look for this ‘tumor’ that I was sure was there.  Well the MRI came back negative and I was ironically disappointed!  I was so sure I had cushings but maybe I was just crazy?  The symptoms continued to get worse and I just knew that I had cushings even though everyone told me I didnt because I was still petite and didnt ‘fit the picture’.

I had a colleague write a script for me to check my cortisol level and it was a whopping 56.  I immediately called my endocrinologist and got more testing done that week.  My ACTH level came back undetectable and I got an MRI of my adrenal gland done and suprise! There was my tumor.  I am getting married in August and I am so happy that I got this miserable tumor out now so I can restart my life as a normal person.  No one understands unless they have cushings the severity of the disease and how much it can change and effect your life.

I hope that people become more aware of the disease so it is no longer misdiagnosed and brushed off like mine was for so long.  I am so frustrated with my Doctors and with myself for being so ignorant, I feel like I wasted a good portion of the best years of my life suffering with this tumor and I hope people read this and realize there is hope!  Just 10 days out of surgery I feel like a whole new/better person.  I am on oral hydrocortisone now until my pituitary and other adrenal gland wake back up and start producing cortisol on their own but even with the steroids I feel great, a lot of my symptoms have started to resolve since I am at a lower dose of steroids and I can’t wait to start tapering down and be completely off of them hopefully by my wedding.

I am so happy that I was proactive and never gave up looking for my tumor and I cant wait to restart my life 🙂

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Tiffany, Adrenal Bio

1 Comment

golden-oldie

Only recently diagnosed after several medical issues.

I had to do my own research and had someone non-medically related suggest that I might have cushings. I was in denial and then after having two others suggest it, I asked to be tested.

The result is that I have Cushings of the adrenal gland, I will be having laproscopic surgery on the 15th of November (2010) and have no idea what to expect.

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Mickey D (MickeyD), Adrenal Bio

4 Comments

adrenal-location

I am now 65 years old. I was first diagnosed with Cushings Syndrome in 1995 after 2 years of weekly doctor office visits stating that “my blood tests came back ok, so it must not be anything serious”.

My blood pressure shot up to stroke levels daily, my hair was falling out, I gained about 8 lbs in 6 months, had the moon face, buffalo hump, etc.,etc..

Every possible test imaginable was done to find the problem except a CT scan. The CT scan I had (after 2 years) revealed that I indeed had a tumor on my adrenal. I went to surgery and had the tumor and adrenal removed.

In fact, if I may interject, I was the “guinea pig” for the Laparoscopic Adrenalectomy performed by the doctor who invented the procedure. I was subjected to hundreds of observations while I was in the hospital for 2 days by student doctors and other Endocrinologists who wanted to see the outcome of the new procedure. Anyway, I went home after the surgery, returned to work in a week and was told I would not have to worry about ever getting this again.

I have had problems of various natures since the surgery. They have not required surgery but have been very emotionally upsetting. I can not seem to lose weight no matter what I try and I have tried it all. I did lose about 50 lbs shortly after surgery but I am still overweight and cannot seem to get it off.

I know my age isn’t helping but I am very physically active even with my age. My middle section is fatty, my breasts are enornous which is not a family trait, and I had had a total hysterectomy in 1994 at the age of 46 and I suffer daily with extreme hot flashes and mood swings.

The hot flashes are affecting my life. I am miserable. I have talked with my doctor about the weight, hot flashes, irritability but he doesn’t think it is caused by the Cushings from before. I DO!!! I have not been to an Endocrinologist since I was diagnosed back in 1995 so I have not had my levels checked. I don’t know what to do. I’m starting to think like I did back in 1995, that this is all in my head and it’s my fault that I cannot get relief for these symptoms I still have. I do not have a OB/GYN because my old one retired.

So, I am hoping that there is someone who has advice for me . I didn’t know this resource was here but I sure am  glad I found you.

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Jackie (samsmom), Adrenal Bio

1 Comment

Jackie (samsmom) first started dealing with Cushing’s in her family when her youngest child was born in 1999.

Jackie has appeared on the Discovery Health tv show pilot, Mystery Diagnosis, discussing her fight for a cure for her younger daughter, as well. 
Download from amazon.com: Mystery Diagnosis

Later at the NIH, the gene (PDE11A) responsible for Sam’s illness was found. Her father carried the gene as did her two sisters.

Sam’s doctor at NIH, Dr Stratakis has written several papers on Sam’s case including one that was published in April, 2008. For more on PDE11A or iMad, please see A cAMP-specific phosphodiesterase (PDE8B) that is mutated in adrenal hyperplasia is expressed widely in human and mouse tissues: a novel PDE8B isoform in human adrenal cortex.

Jordan, Jackie’s oldest daughter, has recently had her adrenals removed. She had one removed laparoscopically and the other was an open adrenalectomy.

Listen to Archived Interview from May 15, 2008

Jackie last updated her bio 10/12/2009.  This is another Golden Oldie.

~~~~~~

On march 22nd 1999 Sam was born 5 weeks prematurely, weighing in at 5 lbs 11 oz after a difficult pregnancy and delivery. Sam didn’t ever ‘look’ right to me. I had had two daughters prior to Sam and never felt such a feeling of unrest and anxiety about a baby. The doctors assured me there was nothing wrong with Sam. She had enormous chipmunk cheeks and was bright red. She was very agitated and struggled with feeding due to the size of her cheeks. It was determined within the first 24 hours of life that Sam had “breathing difficulty” and trouble keeping her tempeture up. She was sent to the NICU the evening of her birth.

Around day three… Sam’s ‘pediatrician’ told me that Sam was having high blood pressure readings. A neonatologist was called in to observe her. Her pressures remained high and she was immediatly prescribed high bp meds. After weeks of increasing and adding additional doses Sam still had high bp. On day 18 she was transfered via ambulance to Seattle Children’s hospital.

She was catherized and given a 24 hour urine free cortisol test. She had necrosis so bad in her diaper area she almost lost concousness when her diaper was changed. Her bum was so raw and bloody it bleed through her plastic diapers down her leg. They lay her under a heat lamp and managed to make contact with the bulb to her skin. She got a 3rd degree burn. The 24 hour urine test was botched in the lab. Her hematicrit was 18. They sent us … home. On two different kinds of bp meds and a tube of desitin.

Sam was better off at home. We had a bp machine and monitered her every 4 hours. She was losing weight due to her feeding difficulties and she vomited anything she did manage to get down. Her bp slowly came down. We went to see an endo at about 4 weeks old who wanted to take blood out of her juglar vein for a blood test. All sam’s veins had collapsed at this point. I told him I would take Sam and jump out the window with her before I would allow the jugular blood draw. I left the building.

Over the course of the next month we realized we were on our own. Bill and I noticed that the bp was coming down so we slowly weaned her off the bp med and antibioltics(for the necrosis). Sam was rarely awake at this point and very frail and pale. We felt the meds were doing her more harm than good. We saw countless doctors who all came to the same brilliant conclusion; all these odd symptoms were simply due to her prematurity. Her serum cortisol at this point was 45. The so called doctors said she was under a great deal of stress, and dismissed the idea of Cushings syndrome. Because babies (even children) don’t get Cushing’s… after all.

At about 3 months Sam’s features started to normalize. The puffiness went slowly away… she began to feed better and the necrosis healed. Slowly she started growing but still vomitted most of her feeds. She screamed relentlessly and slept infrequently and for short bits… I sleep upright in a chair with Sam on my chest the first 9 months of her life. Sam awakened hysterically ever 2 hours on the dot. This continued until she was four years old.

Sam was slow to walk, speak, roll… she was small and thin and very crabby all the time. We trudged on… my other two daughters nearly invisible due to the needs of Sam. I knew Sam was sick. I knew there was something wrong. My husband diagreed with me. He told me to trust the experts. So reluctently, I did. Sort of.

At 19 months of age Sam, still waking every two hours, would be drenched with urine from literally head to toe. This was very strange. I ended up putting towels under her because I ran out of sheets. I slept in a cot in her room. With 10 days… Sam had gained 10 lbs. She was BRIGHT red and agitated. Her bp went back up… her appetite was vorocious. The only thing that soothed her was me rocking her back and forth and patting her back. She fell asleep to Ryan Adams “Stars go Blue”…she would scream until I repeated the song over and over and over…. She would hold her head and cry and cry… finally to sleep for two hours… the repeat.

We brought her to a new endo who thought she had prader wili syndrome. I explained she had gained 10 lbs in 10 days. He might as well have laughed at me. He said she was obese and had behavior problems. He told me it would take 5 weeks to get the PW test results back. When we did it was negetive. Though her cortisol was 49. Stress, he said, stress. By then Sam had shrank back down to her present weight and her chipmunk cheeks were gone. SHe still woke up every two hours and demanded ‘her song’ to get to sleep.

When she was well enough, I flew Sam to Arizona Childrens Hospital and visited with an endocrinologist in Scottsdale. This is the first I heard about cyclical Cushing’s syndrome. No tests were ordered as Sam was asymptomatic at that time. She remained Cushing’s free for about 6 more months.

At around 31/2 years… Sam went into a particularly bad cycle. She was so sick she couldn’t stand up. She sat and cried and cried and cried. Nothing could console her but that damned Ryan Adams song and her black cat Max. She gained 15 lbs in as many days. She got a face full of acne and stretch marks on her stomach. She rocked and cried and held her head.

About this time I posted my first post on this board. I was desperate, angry, terrified and sick with grief. I KNEW Sam was going to die. My posting was answered by the angels that are here… all agreed Sam had Cushing’s, all gave me strength and validated me… all were rooting for Sam. At the doctor the next day she had a urine test that showed protein in the urine. i was told to go to Children’s Hospital immediatly; Sam was diabetic. Huh?

I went in to the hospital raging. I demanded the endo on call…. I shouted at the fellow. I snapped at the nurse…. I kicked the bed out of my way….. and in walked Dr. Dan Gunther. Sam was screaming, I was screaming… he was calm. He sat down. He listened… he nodded…. I went on and on about Cushing’s and the board and the high bp and the acne and the necrosis and no one caring…. and the ‘Stars go blue’… for 2 solid hours. He took notes. I showed him pictures… I showed him what she had looked like 5 days prior…and 10…. He ordered an immediate ultrasound of her adrenals and sent us home with 3 jugs for 24 hour urine cortisols.

Dr. Gunther called me the next day (Thanksgiving) to see how she was. He told me he would help her. He told me he would help me. He told me “no one is going to die.”

Sam and I went to war with the urine tests. She was a champion. She was excessivley urinating at this point (and not night trained anyhow) so I woke her every hour to pee in a little bed pan. Soon Sam was standing up on her little bed, peeing in her sleep and hitting the repeat on her trusty CD player so she drift back off to her song.

Sam’s first 24 hour urine came in a 2900. Dr. Gunther admitted her for testing. He contacted Dr. Stratakis at NIH and followed the testing protocal recommended by him. All of Sam’s tests reveiled a Cushing’s diagnosis. On day 3 Dr. Dan told me there was some suspicion among the hospital that Sam had been given mega doses of steroids and was being posioned. I looked at him as though he had gone mad. He said that some docs felt I was giving her steroids. They thought I had Munchausen by proxy. I assaulted Dr. Dan verbally and he took it. Then he told me that he disagreed with them and kept Sam another day to prove that Sam’s adrenals were the ones making the steroids, not Sam’s mother.

The tests showed that Sam’s adrenals were in fact making the cortisol. I was cleared of any wrongdoing.

Dr. Dan sent us to NIH in February of 2003. Sam was not in a cycle at that time. Sam still tested positive for Cushing’s throughout 2 grueling weeks of testing. On the way home on the plane… Sam started shouting for her song… then she started eating all her food…. then my food…. then tried to get the guy’s next to me food…. I turned on “Stars Go Blue” and just ***knew*** she was starting a new cycle.

Within 10 days of arriving home and 3 more 24 hour urines it was determined that Sam was in a cycle. She gained 12 lbs. Dr. Stratakis told me via phone that she would need to have the bilateral adrenalectomy as she had tested positive for PPNAD. But first she would need to show high numbers AT NIH. They could only schedule us back the end of March… for the first time I prayed that Sam would STAY in the Cushing’s cycle…. Sam turned 4 on March 22, 2003. She got a guniea pig, a pony and twin kittens. She was too sick to care.

On March 28th we arrived back at NIH. Sam was coming OUT of the cycle rapidly, however Dr. S was very startled by the difference in her appearence.. I was insane with anxiety that she would have low numbers and be denied surgery. But my Sam pulled if off…. her 24 hour urines were around 500…. a little lower each day. Dr. S could actually WATCH Sam could out of her cycle.

Sam had a BLA on April 8 2003 (Harvey Cushings b-day and Cushing’s awareness day). Her surgery was successful. She stayed in the ICU for 16 days. 3 of those on an epidural for pain management. She was brave and strong and happy. She was all bubbles and smiles…. and didn’t have so much as a tylenol when the epi came out.

In Summer of 2005 the Discovery Health channel contacted me regarding a new show they were producing called “Mystery Diagnosis”. I agreed to tell Sam’s story along with Dr. Dan who had become one of our closest friends. Our show aired in November 2005.

In September 2006 Dr, Stratkis contacted us and told us he had found the gene responsible for Sam’s illness. Her father carried the gene as did her two sisters. I did not. Both of Sam’s sisters went back east for testing. Each were negative for active Cushing’s Syndrome.

In April of 2007, my eldest, Jordan (15 then) was back at NIH. She had had a 60 lbs weight gain during the school year. I knew what was happening. Dr. S’s tests confirmed it. Jordan had her left adrenal gland removed in October of 2007. There were complications and only one gland could be taken at that time. She recovered from that surgery within 2 weeks and we arrived home October 11, 2007. I recieved the devestating news that Dr. Dan Gunther had passed away. His death ruled a suicide.

During Christmas break Jordan began to get sick again. Her weight increased and her bp and sugars rose. I took it upon myself to find an endocrinologist and surgeon at Stanford University Advanced Cancer Center willing to preform her unilateral adrenalectomy. Dr. Jeff Norton preformed an open procedure and Jordan has recovered nicely. She has had little relief from Cushing’s symptoms and is still unable to go to school. Every day is a baby step for all of us. My life is a maze of pills 3 times a day for 2 kids at 3 different times. Forever.

Jordan and I will travel to NIH the last week of May 2008 for post op/6month testing. I am praying she does not have an active Cushing’s tumor on her pituitary.

I often wonder what happened in my other lives that dealt me such a tragic hand… whatever it was I hope it was fun. Sometimes I pretend I am a character in a Robin Cook novel… it isn’t that far of a stretch.

I miss my friend Dr. Dan everyday. My heart still aches whenever I think of him. I may never get over his death.

As I type this Jordan has just come in from a pedicure with her middle sister and Sam is watching Scooby doo… I can hear Sam’s CD still playing upstairs where she left it on… I swear to God it’s playing Ryan Adams “Stars Go Blue”.

 


Jackie and Jordan were the subjects of a Live Interview in the Cushing’s Help Voice Chat / Podcast series May 15, 7:30 The topic was Cushing’s in young people, the fight to diagnose, the amazing gift of a GOOD endocrinologist.

Listen to CushingsHelp on internet talk radio

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