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In Memory of Natalie Fay ~ April 21, 2008

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This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


Guest
Book
| Sign
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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

In Memory of Natalie Fay ~ April 21, 2008

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This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


Guest
Book
| Sign
Guest Book

Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Addison’s Disease: Periods at 4 years, Menopause at 5

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A five-year-old girl from Australia who started menstruating at the age of four will soon start exhibiting signs of menopause, a result of Addison’s disease.

Emily Dover’s birth was absolutely ‘normal and happy’. By the second week, however, she started growing at an unusual rate. She was the size of a one-year-old by the time she turned 4-months-old. By the time Emily turned 2, she had developed breast buds, body odour and a rash on her skin that was diagnosed as cystic acne.

In addition to Addison’s disease, Emily has been diagnosed with congenital Adrenal Hyperplasia, Central Precocious Puberty, Autism Spectrum Disorder, Sensory Processing disorder and Anxiety Disorder.

The 5-year-old’s adrenal glands don’t produce enough steroid hormones.

Emily’s mother Tam Dover said her daughter is body conscious and aware that she is different from other children her age, reports Mirror Online. Sadly, the little girl is unable to understand what she is going through.

Constant pain and reduced mobility required Emily to undergo weekly physiotherapy sessions. At present Emily is five years old, and has started menstruating. After she starts a hormone replacement therapy, she will hit menopause, with all the side effects a woman over 50 years of age has to face.

“She hasn’t even had a chance to be a little girl. She’s having to learn how to put panty liners on for menstruating,” Tam tells Mirror Online.

Tam has set up a GoFundMe page to raise money to cover the ‘astronomical’ costs of her daughter’s treatments and medical care.

“Each time her growth was measured it was always way above the 99th percentile, and often 99th percentile for a couple of years above her age,” Tam wrote on the GoFundMe page.

From http://www.hindustantimes.com/health/periods-at-4-years-menopause-at-5-the-little-girl-who-never-got-to-be-a-child/story-p2kkpyd31fvsBzP21LDWcO.html

~~~

 

A Stunning Woman Reveals The Devastating Secret Behind Her Weight Gain

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Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.

Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.

The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.

But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.

After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.

Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.

“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.

”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.

“I felt bloated all the time and I didn’t want to leave the house.

“I continued working out at the gym not realising I was causing damage.”

In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.

Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”

Despite numerous tests, medics continued to deny there was anything wrong.

The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.

She said: “I took my MRI and CT scan and they saw the tumour was in my brain.

“My hospital had completely mis-read it.”

After further tests, doctors were able to confirm it was a brain tumour.

She said: “I’m not sure how long I had the tumour. I thought I was going to die.”

After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.

She said: “Two days after the first surgery and my feet were normal.

“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.

“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.

“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”

The road to recovery has been long and after eight months, Vicki still has a way to go.

But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.

She said: “It’s a slow process.

“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.

“But I am starting to see improvements and I’m just focusing on my son and school.”

Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.

“He’s the most important thing, I couldn’t have got through this without him.”

From http://www.dailystar.co.uk/diet-fitness/594013/Gain-weight-bikini-fitness-model-brain-tumour

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Niamh (niamhiblog), Adrenal Bio

4 Comments

adrenal-medulla

Full link to my blog: https://niamhiblog.wordpress.com/

I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!

To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.

Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!

I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.

So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.

Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.

I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?

How did I not realise I was sick?

I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.

That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!

Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.

Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!

Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.

face

It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).

After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.

After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.

I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.

The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.

Lack of libido. What libido?!

Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.

Brittle bones. I was diagnosed with osteoporosis at 24.

Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.

The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.

Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.

Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.

Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.

Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.

In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.

After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.

I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.

And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.

Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.

By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.

Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.

As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.

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Emily B-C (EmilyBC), Undiagnosed Bio

2 Comments

undiagnosed3

 

Hi.  I am a 40 year old female who has been feeling “not quite right” for almost 10 years.  I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years.  I continually have vitamin D deficiency issues.  I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.

This year, I started feeling worse than usual.  I have zero energy and my brain is in a perpetual fog.  My muscles and body ache, my face is round, and I have gained 40+ lbs over the years.  There are days that I physically cannot get out of bed.  I have fainting spells and a racing heartbeat at times.  I crave carbs and salt.  There is not enough water in the world to drink and I have to run to the bathroom frequently.  No matter how hard I try the weight will not come off.  When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.

I was an avid equestrian- 3 day eventer.  I was riding and showing no less than 3 times a week.  I was getting fit.  Now I am just a useless blob that can’t do anything.  I have been pushing to go to the barn to just groom and be with my horse as much as I can.  

My doctor found that I have an unusually high blood cell count a couple of months ago.  I was sent to a hematologist to find out why.  We did so many tests I quit counting.  The conclusion was that I am not sick enough to be sick.  So many tests were coming back normal or high normal.  No lupus, no leukemia, no answers.  I finally asked about Cushing’s because I have a majority of the symptoms listed.  My doctor was skeptical, but agreed to let me do a 24 hour urine test.  It came back high.  This has allowed me to move to an endocrinologist.  I also have high levels of reverse T3.

So far I feel like a complete lab rat.  I have now done 2 salivary Cortisol tests and have another urine test this week.  One of the 2 saliva tests came back very high.  My doctor said we have to do yet another saliva test to test the last results.  After all of this we will do a dex suppression test.   

At this point I am very depressed that I am unable to live my life.  Riding is not an option because I just get “floppy” and risk falling off.  I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.  

I am so lucky to have a doctor that believes my symptoms are real.  She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do.  For now, I am just a good lab rat.

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In Memory of Natalie ~ April 21, 2008

11 Comments

This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Sharon, Undiagnosed Bio

1 Comment

A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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Natalie, Pituitary Bio

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This is another Golden Oldie.  I’m not sure when it was last written or updated by Natalie but it was updated by me after she died April 21, 2008.

~~

Hi! My name is Natalie, I am 35 years old and I’ve been married for 15 years. I don’t have any children at this time, but we are in the process of adopting. We can hardly wait for our little one to show up on our doorstep. We live down in southern Maryland at this time. I grew up in southern Virginia on a farm. My Dad is still farming; he raises peanuts, corn and soybeans. He has had 2 battles with colon cancer and is still hanging in there. He gives me inspiration. I have my Mom and Grandmother still living home on the farm too and we get there as often as we can. My sister lives near by my parents and has 2 boys. They spend a portion of every summer with us.

There is so much to tell, I really don’t know where to start. I had my official diagnosis in Jan. of 1990. But after all of the information I have learned over the years, I fully believe that it could have started as early as childhood. We will never know for sure.

When I graduated from high school in 1983, I was a happy go lucky teenager with a steady boy friend and many friends. My first year of college was great. I had a lot of fun and thought I had made so many new friends. Joe (boyfriend then, now my husband) left for Marine Corps Boot Camp in the spring of 1984. That was hard but I adjusted fine and was glad to see him come home that summer. In the fall when it was time to go back to school I was a different person. I withdrew from my friends and I pretty much kept to myself. After a weekend visit from Joe, I slipped into a deep depression. I stopped going to class and to work. My so-called friends didn’t want anything to do with me. I started having headaches and dizzy spells. I was really scared. No one knew what I was feeling or would even try to understand. I ended up dropping out of school and went back home. I didn’t want a job; I just stayed home and did baby-sitting jobs. My nephew was born in August of 1985 and I took care of him full time until Joe and I was married in June of 1986.

On our wedding day I cried all through the picture taking. I was very happy but cried anyway. We went to the Blue Ridge Mountains for our honeymoon, I got stung by a bee, got a speeding ticket, and we had no air conditioning in our truck. It was truly one to remember. We came back and moved to North Carolina, where Joe was stationed at the time, and I cried for the next 2 weeks. I had never been that far away from home before.

As a child I had a bad case of asthma and now all of a sudden I’m having no problems. Little did I know that my body was treating itself with cortisol. In Jan. of 1987 I had a doctor’s appointment with my Allergist.

I was told then that I had High Blood pressure and to keep check on it. I was also beginning to be very emotional around this time. I would cry over nothing.

I started having migraine headaches while Joe was away on a deployment. My parents came and took me to the ER and because I had not been able to eat for 3 days and I was living in the dark because the sunlight was killing my head. Again I was told that it was High Blood pressure. Joe came home and left again in June for 6 months on the ship. I moved home and didn’t have any problems that summer. I moved back to Carolina in the fall so that I could get our house ready for Joe’s home coming. The real nerve racking part was that Joe’s ship was part of the mine sweeping going on in the Persian Gulf during 1987.

1988 was a pretty good year. Not too many problems except for headaches. But 1989 is a different story. I fell apart this year. In the spring I broke out in this strange rash that wouldn’t go away and I couldn’t find a doctor that could tell me what it was. Not long after that my periods stopped, we were really excited thinking that we were finally going to have a baby, WRONG! I went 3 months without a cycle; I still had the rash, headaches and high blood pressure. You would think that this would have alerted my OB GYN that something was wrong. Joe came home one day and found me doubled over and took me to the ER and we found out that I had kidney stones. Over all this time I am steady gaining weight. The stones passed and then tests were done and everything was fine there. Finally I decided to go to see Dermatology for the rash and was treated for severe acne. On my second visit with them the doctor took a look at my entire medical record and excused himself from the room. A few minutes later he returned with a doctor from Internal medicine, he took one look at me and said that I was the classic Cushing’s case. Then he went on to explain it to me. This was in Nov.1989. The tests began and I had a CT Scan done in Dec of that year that I didn’t get the results from until after Christmas. They showed a tumor on the pituitary and I was told to go to Portsmouth Naval Hospital right away. We took off and headed to Virginia not knowing what to expect. I was admitted the next day and had a week of peeing in a jug and lots of bloodwork. I was sent home with my surgery scheduled for Feb. 1990. Well, being the Navy, my surgeon was called away and my surgery was delayed until March.

I had transphenoidal surgery in March 1990 and they removed what they could but it had invaded the sinus cavity and they couldn’t get it all. I was sent home on hydrocortizone and had 2 episodes where my cortisol levels dropped too low and had to go the ER. Once I was weaned off I was okay and actually felt pretty good. I had monthly 24-hour urine tests run and they began to come back high again. I was put back in the hospital in Portsmouth and all the tests came back normal. I was sent home and a couple of months later they were high again. Again I went to the hospital and sent home normal. What’s going on here? The next time this happened I demanded that something be done. The head of the Endo dept. (I won’t mention any names, but Handiman knows him personally) tried to tell me that I was faking it so that my husband wouldn’t have to go the Desert Storm. I talked on of the interns to schedule me for an appt with the radiation oncologist and they determined that the tumor was still growing and that I needed to have radiation. Joe was scheduled to go to the desert but he was pulled from that duty and assigned to recruiter’s asst. and we moved to Virginia to my parent’s home for 60 days while I underwent 31 days of traditional radiation to the pituitary. I went back to Carolina feeling more at ease that something had been done. The rash went away but I continued to gain weight and still had Blood pressure problem, but was now being treated for it.

I was doing really well and Joe went away again for 6 months in Oct.1991. He was gone that Christmas, which was hard but I handled it ok. When he returned he had orders to go to Atlanta, GA. I was doing well and we packed up and went. I didn’t like the endo I saw there so I continued my 6-month check ups in Portsmouth when went home to visit.

In the summer of 1994, I started having problems with my left eye and thought it was allergies. I went to the eye doctor and after examining me he sent me to a Neuro Ophthalmologist who ordered a MRI and guess what The Tumor’s back! It was pressing on the optic nerve causing what they called a third nerve palsy. I was treated with medication until Jan 1995, hoping that the tumor would shrink but it got worse. I began to have double vision and my left eye closed completely. In the spring of 95 I again underwent Transphenoidal surgery at Emory University under  Dr. Oyesiku. He was great. I also had a great endo there, Dr. Lewis Blevins (he is at Vanderbilt in Tenn. Now). They still could not retract the entire tumor so I went back in August of that year and had Sterotactic Radiation Surgery. That was a one time radiation and it was a real experience. I had a metal Halo drilled into my head and I had CT scans and MRIs done with it one to determine the exact location of the tumor, then I was placed in a chair that spun in very slow circles while the radiation was being done. When I arrived back in my room they couldn’t find the key to take the halo off, so I had to wear it for another 2 hours until they found it.

It has now been almost 6 years since the last radiation and my current MRIs show some shrinkage of the tumor. I am currently battling high cortisol levels again but I think if we can find the right dosage of medicine it will level off. I am currently taking meds for: thyroid, high blood pressure, estrogen, diabetes, medication to control cortisol, allergy medication and every 3 months I take hormones to make me have a menstrual cycle. But over all I am doing OK.

My husband is out of the Marine Corps now and we live in Maryland. We are in the process of Adopting. We are really excited about this and can hardly wait to get our little one. My husband and Family have been so supportive of me through all of these years and I don’t know what I would have done without them and my close friends.

I feel like I have made many friends here also. This site has been a great help to me and I hope that my story can help someone else.

Take Care everyone!

Natalie

MaryO Note: Natalie had a BLA in March, 2008. She died April 21, 2008.
In Memoriam

Natalie Fay

Monday, April 21, 2008

2001 Cushing’s Lunch. From
left: Joe (Natalie’s husband), Natalie and Linda

Natalie Fay (Natalie65), died April 21, 2008. She was only 42 and had recently had a BLA. I first
met Natalie at a local lunch in November of 2001 and have seen her seval times
since then.

Natalie started the original “Dammit Dolls” that circulated
around the country until people refused to pass them along anymore.

Dammit Doll.

Natalie also made counted cross-stitch
Cushing’s Awareness Pins:

Natalie’s bio… http://www.cushings-help.com/natalies_story.htm

Some recent past
posts.

February 10, 2008

going to UVA I am going for my first visit with Dr. Hanks at
UVA on the 20th. I will also see Dr. Vance that day. I haven’t seen her before
either. I am planning on having bilateral adrenal surgery in March. I am a
little nervous about this, but it is going to be a positive thing I hope. I
would love to hear from anyone who has had this done so that I will have an idea
of what to expect. after surgery.

Thanks! Natalie

March 18, 2008

surgery update Hey everyone!

I’m back! It has been a
very slow week and I’m just satrting to feel like moving around again. I had BLA
on the 10th and came home on friday. My parents have taken my boys (3 & 6)
home to Va. I have missed them so much this week, but I think it was the right
thing to do. I don’t know how I would have done it without them. I am still very
sore and tired at times, but I’m coming along. Sorry this has taken so long to
get out to you guys, I thought things were taken care of but I was wrong. Oh
Well! I’m doing good and I’ll keep in touch. Thanks for all of your thoughts and
prayers.

Natalie

Message Board Signature:

pit surgery 1990
traditional 30 days
radiation 1990
pit surgery 1995
sterotactic radiation surgery 1995
2004
still have remaining tumor
cortisol levels still off balance
BLA March 10,
2008


Tributes and Memories on the message boards…


Our first local DC area Cushie lunch November 17, 2001 with Linda, Jayne, me and Natalie – all in Cushe Colors [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: Robin]

Our first local DC area Cushie lunch November 17, 2001 with Jayne, Linda, Natalie, MaryO and Dianne [Photographer: TomO]

Our second local DC area Cushie lunch February 9, 2002 all the families [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO [Photographer: Robin]

Our second local DC area Cushie lunch February 9, 2002 with Jayne, Marcia, Heather, Natalie and MaryO. LynneInVa made the roses for us from candles. [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with lots of us! [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: TomO]

Our next local DC area Cushie lunch May 4, 2002 with Pat, MaryO, Ruth, Natalie, Susan, Jayne [Photographer: Robin]

Our next local DC area Cushie lunch May 4, 2002 with Joe, Jed and Catherine [Photographer: Robin]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

Our three families: Tom and MaryO, Natalie and Joe, Robin and Jayne…and kids [Photographer: a waitress]

TomO being silly, stealing Catherine’s nose. [Photographer: Robin]


http://www.wrightfuneralhome.org/index.cfm

Natalie Grissom Fay
(June 11, 1965 – April 21, 2008)


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Courtland, Virginia– Natalie Grissom Fay, 42, passed away April 21, 2008 at St. Mary’s Hospital in Leonardtown, Md. She was born in Petersburg, Va, a daughter of Edward Scott and Nan Lucy Grissom and was a 1983 graduate of Southampton High School. Natalie actively supported several Cushing Support Groups, and was a member of the Patuxent Presbyterian Church. Surviving in addition to her parents is her husband, Joseph P. Fay; two sons, Joseph Edward (Jed) Fay and Nathan Lee Fay all of Hollywood, Md.; one sister, Annette G. Stephenson of Courtland, Va.; two nephews, Scott and Vance Stephenson; and her father-in-law, Edward K. Fay and wife, Sunee, of Deltona, Fl. The funeral will be conducted at 2 pm Friday at Wright Funeral Home with the Rev. Edmund Ellis officiating. Burial will follow in Riverside Cemetery. The family will receive friends from 7 to 9 pm Thursday at the home of Edward and Nan Grissom, 16046 Wakefield Road, Courtland, and suggest that in lieu of flowers, memorials may be made to Cushings Help, c/o Mary O’Connor, 4094 Majestic Lane, #328, Fairfax, Va. 22033.

Jean (Jinxie) Cushing’s and Acromegaly Bio

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This bio was originally posted 1/26/2008

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My Cushing’s and Acromegaly Odyssey

During the summer of 1999 I was a trim and fit 130 pound woman. I was very athletic and worked out all the time. At that time I had also been taking Tae Kwon Do. I was able to eat anything that I wanted and not gain weight. I wore size 8 pants.

Fast forward to May of 2000. I developed increasing stomach and bowel problems. I had a spastic colon and serious GERD. Along with that came a poof in my belly. Although I was still wearing the same size my stomach started to look “pregnant”. I was referred to a gastroenterologist who began treating my myriad of health issues. He really couldn’t find a reason for all of it but said he could treat it. For awhile I managed okay on the drugs and diet that I was treated with. Everything went in cycles.

During the summer of 2001 my naturally light blonde hair began to change color. It got black and mousy looking at the roots. At the same time it started thinning, the texture was horrible and no longer shiny and baby soft. I developed heat intolerance. I was uncomfortable in 80 degree weather. I also developed strange rashes and red dots on my skin. Later that fall my neck and face started to turn beet red. It stayed that way.

I could no longer fit in my wedding rings and my shoe size went from a size 7 ½ to and 8 1/2. Doctors didn’t find this impressive. My neck went from 13 inches around to 16. I gained 12 pounds in 1 week alone. I started getting real fat in my stomach and armpits, and I could no longer wear normal bras. I also started getting a lot of fat on my upper back. I grew hair in places that women should not grow hair. My face was huge with strange acne outbreaks. I also got acne in weird spots.

At the time I had put on about 20 pounds all in my stomach. When I would try other clothing it wouldn’t work because the next size bigger fit in the waist but the butt and legs were huge. I gave up on real pants and started to wear stretch clothes all the time. At this time I could no longer exercise to my peak performance. I was tired all the time and never felt well and I looked like I was 6 months pregnant. I thought that I was getting old.

January of 2002 my bowel and stomach troubles peaked. I was in and out of the hospital. Although I was following the healthy eating plan and exercising no doctors believed me. My PCP did a TSH test and it came back at 27.48. I was hypothyroid, at that time my estradiol levels were also non-existent. So off I was sent to an Endocrinologist. I was given replacements for both yet nothing improved.

This started an intense year of doctors. I was diagnosed with anything and everything at this point. I was started on the Atkins diet plan. I followed this religiously and walked for up to 2 hours a day and continued to gain weight. By this time I was 165 pounds. Finally realizing that something horrible was wrong with me I started seeking out Endo’s on my own. It led me to one who thought he should do a few 24 UFC’s. One came back high, 2 others came back high normal (33.4 and 33.9 with a range of 2.9-34). They then did serum cortisols which came back below normal. I was frustrated.

It was November by now and I was getting no where fast. At this point I had seen 11 different doctors. The last of which told me that there was no way I was eating healthy and not losing. He even suggested that my fresh sliced berry snack was making me fat. By now I’ developed high blood pressure and high blood sugars. My fasting blood glucose came in at 170.

By this time I was so exhausted and developed such horrid bone pain that I could not even exercise anymore. I remember waking up late one morning and crying. I went downstairs and told my hubby I was sure my back was breaking. It was horrible. I weighed 196 pounds and looked 9 months pregnant with triplets.

I came home and looked the tests up on the internet. I started reading everything that I could find. I knew then that I had Cushing’s. I found the Cushing’s help site. The trouble was that some tests were normal and some were abnormal. Finally in January of 2003 I went to see Dr. Friedman after another patient emailed me. Dr. Friedman tested my 17-Hydroxysteroids and 17- Ketosteroids which came back elevated. He also did some additional salivary cortisols testing. He finally figured out that I not only had Cyclic Cushing’s but also Acromegaly.

After many more tests and some MRI’s my tumors were found. I had pituitary surgery to remove them. I was devastated that I was not cured from the Cushing’s. After much consulting I decided to proceed with a Bilateral Adrenalectomy to cure it once and for all. I am recovering slowly but surely.

I am now 4 months post-op.

Click any thumbnail to view the larger image.

Before Cushing’s [Photographer: Jeanne’s family]

In the kitchen [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

Jinxie [Photographer: Jeanne’s family]

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