From the February, 2022 issue of Reader’s Digest:
Read the original article at readers-digest-misdiagnosed
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
In Memory of Natalie Fay ~ April 21, 2008
April 21, 2021
Adrenal, Cyclic, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments acne, adoption, Allergist, Asthma, Atlanta, bilateral adrenalectomy, BLA, bloodwork, children, colon cancer, cortisol, counted cross-stitch, CT scan, cushing, Cushing Syndrome, Cushing's Awareness Pins, Dammit Dolls, depression, Dermatologist, Desert Storm, diabetes, dizzy spells, double vision, Dr. Hanks, Dr. Lewis Blevins, Dr. Nelson M. Oyesiku, Dr. Vance, Emory University, emotional symptoms, estrogen, eyes, headaches, Health, high blood pressure, hydrocortisone, hypertension, In Memory, kidney stones, medication, menstrual cycle, migraines, Neuro Ophthalmologist, North Carolina, OBGYN, optic nerve, periods, Persian Gulf, pituitary, Portsmouth Naval Hospital, radiation, radiation oncologist, rash, sinus cavity, Stereotactic Radiation, surgeon, third nerve palsy, thyroid, transphenoidal, transsphenoidal, tumor, UFC, UVa, Vanderbilt, weight Leave a comment
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)
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
April 21, 2020
Adrenal, Cyclic, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments acne, adoption, Allergist, Asthma, Atlanta, bilateral adrenalectomy, BLA, bloodwork, children, colon cancer, cortisol, counted cross-stitch, CT scan, cushing, Cushing Syndrome, Cushing's Awareness Pins, Dammit Dolls, depression, Dermatologist, Desert Storm, diabetes, dizzy spells, double vision, Dr. Hanks, Dr. Lewis Blevins, Dr. Nelson M. Oyesiku, Dr. Vance, Emory University, emotional symptoms, estrogen, eyes, headaches, Health, high blood pressure, hydrocortisone, hypertension, In Memory, kidney stones, medication, menstrual cycle, migraines, Neuro Ophthalmologist, North Carolina, OBGYN, optic nerve, periods, Persian Gulf, pituitary, Portsmouth Naval Hospital, radiation, radiation oncologist, rash, sinus cavity, Stereotactic Radiation, surgeon, third nerve palsy, thyroid, transphenoidal, transsphenoidal, tumor, UFC, UVa, Vanderbilt, weight Leave a comment
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)
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.
EvE7070, Pituitary Bio
August 24, 2019
Pituitary, Pituitary Surgery, Recurrence, Treatments depressed, eyes, glucophage, headaches, obese, periods, pituitary, pituitary surgery, remission, weight 1 Comment
Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
In Memory of Natalie ~ April 21, 2008
April 21, 2015
Adrenal, Cyclic, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments acne, adoption, Allergist, Asthma, Atlanta, bilateral adrenalectomy, BLA, bloodwork, children, colon cancer, cortisol, counted cross-stitch, CT scan, cushing, Cushing Syndrome, Cushing's Awareness Pins, Dammit Dolls, depression, Dermatologist, Desert Storm, diabetes, dizzy spells, double vision, Dr. Hanks, Dr. Lewis Blevins, Dr. Nelson M. Oyesiku, Dr. Vance, Emory University, emotional symptoms, estrogen, eyes, headaches, Health, high blood pressure, hydrocortisone, hypertension, In Memory, kidney stones, medication, menstrual cycle, migraines, Neuro Ophthalmologist, North Carolina, OBGYN, optic nerve, periods, Persian Gulf, pituitary, Portsmouth Naval Hospital, radiation, radiation oncologist, rash, sinus cavity, Stereotactic Radiation, surgeon, third nerve palsy, thyroid, transphenoidal, transsphenoidal, tumor, UFC, UVa, Vanderbilt, weight 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)
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.
Sheara (sbailey), Pituitary Bio
March 8, 2015
Cyclic, Hashimoto's, Other Diagnosis, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments Adrenal, cortisol, cyclical Cushing's, Cytomel, dexamethasone suppression test, eyes, Golden Oldie, Hashimoto's, heart arrhythmia, MRI, neurosurgeon, pituitary tumor, prolactin, salivary, success, Synthroid, thyroid, transsphenoidal, UFC, urine test 1 Comment
I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.
I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.
They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.
Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.
In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.
I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.
So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!
Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.
Thanks for listening!
HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
Jeannine, Pituitary Bio
September 11, 2013
Adrenal, Adrenal Surgery, Golden Oldies, Other Diagnosis, Pheochromocytoma, Pituitary, Treatments adenoma, Adrenal, eyes, Golden Oldie, hysterectomy, insulin resistance, MRI, occular migraines, pheochromocytoma, Pituitary adenoma, weight Leave a comment
A “Golden Oldie” from 2008.
Hi everyone. My name is Jeannine and I am an old member of this site. I haven’t been on it since 2003 because I thought my problems were over. Obviously, this is not the case.
I am a 49…soon to be 50. I’ve been married for 29 years and have two sons(26 & 20) and one daughter-in-law. After 3 long years of being told I was crazy and lazy, and searching for answers for my rapid weight gain, fatigue, and lots of other weird symptoms, an adrenal adenoma was accidentally discovered when having a CT scan before my hysterectomy.
After initial testing, I only had very mild elevations in a few tests and negative results in most others. I was told to wait and watch. As the year progressed, I became sicker and heavier. I begged, demanded and finagled tests, still only to be told I just “wasn’t sick enough.” One year and 100 lbs. later, my 24 hr. urines were finally high enough to convince the dr. to do surgery.
My test results were never very clear and I was never given a diagnosis, even after surgery. The weird part about my test results were that I tested positive for a pheochromocytoma as well as for a cortical adenoma. I had my left adrenal gland removed in April of 2003. It was not a pheo and the pathology listed “adrenal cortical adenoma”.
I never had to have any hormone replacement, and aside from not losing the weight and becoming insulin resistant, I was cured. I couldn’t lose the weight on my own, so I joined Optifast, the medical liquid diet program. Over the course of about 6 months, I lost 60 lbs.
Unfortunately, as I started to re-enter normal eating patterns, the weight began to return. There was a steady weight gain almost every week for the past 12 months. I have now gained 50 lbs back. Aside from gaining weight, A few months ago, I started to feel badly again. I immediately had my endo send me for 24 hr. urines and basic blood work, but everything was negative.
Then, a few weeks ago, I went to a new opthamologist to have my eyes examined. I mentioned to him that I sometimes got weird visual symptoms with blurry lines in my eyes. I had first noticed them a few months after my adrenal surgery four years before and they had continued to occur sporatically ever since. I had my eyes examined twice during these last 4 years and nothing was ever shown to be wrong. The new dr. suspected occular migraines, but because of my history with the adrenal tumor, he decided to do a cranial MRI. Lo and behold, I was just diagnosed with a 3-4mm pituitary tumor. So…..here I am, back on the boards looking for answers. I have an appt. in three weeks to see my endocrinologist and the testing will begin.
While I really don’t want to be here, it’s nice to be able to come “home.”
HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio
Natalie, Pituitary Bio
June 22, 2013
Adrenal Surgery, Cyclic, Diabetes, Golden Oldies, In Memory, Pituitary, Pituitary Surgery, radiation, Treatments acne, adoption, Allergist, Asthma, Atlanta, bilateral adrenalectomy, BLA, bloodwork, children, colon cancer, cortisol, counted cross-stitch, CT scan, cushing, Cushing Syndrome, Cushing's Awareness Pins, Dammit Dolls, depression, Dermatologist, Desert Storm, diabetes, dizzy spells, double vision, Dr. Hanks, Dr. Lewis Blevins, Dr. Nelson M. Oyesiku, Dr. Vance, Emory University, emotional symptoms, estrogen, eyes, headaches, Health, high blood pressure, hydrocortisone, hypertension, In Memory, kidney stones, medication, menstrual cycle, migraines, Neuro Ophthalmologist, North Carolina, OBGYN, optic nerve, periods, Persian Gulf, pituitary, Portsmouth Naval Hospital, radiation, radiation oncologist, rash, sinus cavity, Stereotactic Radiation, surgeon, third nerve palsy, thyroid, transphenoidal, transsphenoidal, tumor, UFC, UVa, Vanderbilt, weight 2 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)
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.
Judi L (judi), Undiagnosed Bio
May 1, 2013
Diabetes, Hashimoto's, Undiagnosed ACTH, Adrenocorticotropic hormone, biopsy, Blood test, Buffalo hump, Conditions and Diseases, cortisol, cushing's syndrome, Endocrine Disorders, eyes, fat, fatigue, goiter, hair, Hashimoto's, headache, Health, hirsuitism, insulin resistance, muffin top, nodule, osteopenia, pain, saliva, sleep, Thyroid scan, UFC, urinalysis, Victoza, weight, X-ray computed tomography Leave a comment
I have been seeing the endo for the last couple of weeks. Lots of blood tests, saliva test, 24 hour urine test. Thyroid scan, with nodules, thyroid biopsy benign, small goiter,and diagnosed with hashimoto.
Currently type 2 diabetic fairly controlled with Victoza, but very insulin resistance. First blood tests showed high cortisol, high ACTH, second series of blood tests showed normal to high cortisol and still high ACTH. Doctor said possible cushings. Have had extreme fatigue, beard on chin. Muscle and bone pain consistently. Wake up with headache and extreme fatigue.Bone scan diagnosed with osteopenia. Appt. with endo tomorrow to get results of 24 hr. urine test. Salavia test said was normal.
Have problems with sleep, sleep all day off and on, or have days when I cannot go to sleep at all. She said that I had the hump, muffin top, and belly fat, lean arms and legs. Eyes are puffy all the time now. Have problems losing weight even though I eat healthy all the time, and have excluded gluten, sugar, and going to go diary free. Eat lots of vegetables and fruit as well as a little protein. Have not had a mri or cat scan yet. Probably will be next on the list. Will post after my doctor’s appt. tomorrow and update my bio.
I have a lot of symptoms of cushings and she mentioned this with my second doctors visit after the first series of blood test, but wanted to do other tests to make sure.
Recent Comments