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Jackie (samsmom), Adrenal Bio

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

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

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

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

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

Listen to Archived Interview from May 15, 2008

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

~~~~~~

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 


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

Listen to CushingsHelp on internet talk radio

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.

Lee B, Ectopic (pituitary and lung tumor) Bio

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Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.

~~~

Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.

I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!

Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.

Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.

I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.

Joseph (joeysauce), Pituitary Bio

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Hello everyone. My name is Joe. I’m a 23, soon to be 24 year old male who is (hopefully) in remission from ACTH-dependent Cushing’s disease and two transsphenoidal surgeries.

I’d like to say my journey all started back in November of last year. Though, the past year has been a stressful, anxiety filled year for me with a roller coaster of it’s own. I was working full-time as a web designer at a web firm down the block from me for a little over a year, but was just getting so sick of the grind. I was also dating a younger girl for about 2 years up at this point, who had just left for college last August. Thinking that I was finally going to have a little more time to myself to make and save money and just freedom in general, I was proven very wrong. As soon as she left, the separation anxiety hit me like a TON OF BRICKS. I could hardly sleep, go to work, or even function. I knew the first thing I needed to do was free myself of the miserable grind of work and get back to freelance work. I told my job I was leaving and actually had an opportunity to do some other work with my uncle across the country decorating malls for the upcoming holidays as soon as my two weeks approached. It was a nice break and a good way for me to get away and experience some new things, like my girlfriend was doing. When my girlfriend first went away, I started taking Valerian Root to help me sleep and have been taking St. John’s Wart for about a year and a half to keep the anxiety as it’s lowest. I decided that when I get home from this trip, now that I’ll have a MUCH more free life, that I’d like to cut out all these vitamins that I’ve been taking for years to help with my skin, health and anxiety. Like Fish Oil, Vitamin A, E, C, Multivitamins, Probiotics, etc. I wanted to come home and have an awesome natural routine of exercising, working, and juicing. It sounded perfect. Make money, get fit, stay healthy and feel good. As the end of the trip approached, I was pretty much finished with all the vitamins. We traveled for about a month and a half and was home just in time for Thanksgiving. My girlfriend was home then as well, so it was good to see each other again finally. We were in touch as much as we could be when we were both away and decided to keep things going.

Here’s where things started to change. One of the FIRST things my mom said to me when I got home was “Wow, your face looks puffy and swollen.” I actually agreed and said it’s probably this stuff that I decided to stop taking called “hyaluronic acid”. It’s supposed to make your skin more supple and moisturize from the inside out. I figured that’s why my face was looking that way. I JUST started using it too. As the weeks went on, I noticed that there was a prominent redness in my cheeks as well. My cheeks were usually red like this, and I always thought I had Rosacea, but noticed that they were now red the whole day long, and I could almost see where the redness kind of cuts off. I didn’t pay much attention to these signs, but still was a little concerned.

As the holiday’s approached, I didn’t really get a chance to start working out or running or anything that I planned to do now that I was working home. I was gaining a little bit of weight in my face and my tummy, but just blamed it on being lazy. My girlfriend noticed and would tell me that I’m getting chubby and looking different. It was getting pretty annoying at this point hearing everyone saying that I’m puffy and chubby looking. I then started to work out a little and was running as much as I could outside, even though the winter was approaching and it was getting harder and harder to run. I really wasn’t seeing much progress and even started to diet pretty hard with veggies. The crazy part is that I’ve ALWAYS been such a thing HEALTHY person. Always juicing veggies, always drinking water, always taking vitamins, very athletic, etc. It was crazy that I couldn’t get rid of this belly weight or get my face to slim back down.

This is when the weirdest thing happened…The stretch marks. I began to freak out. I saw these ugly purple lines on my inner thighs and was really confused. I thought…”How can someone my size get marks like this…am I exercising too much?” This was around February, and my girlfriend came home on another break and I remember one morning her mother made a comment and said “Wow, your face is so puffy and red, maybe you’re allergic to something, you look so different” This is when I finally decided that I needed to see a doctor. I decided to see an allergist to figure out why my face is so red and bloated looking. We did all kinds of allergy tests just to find out that I’m allergic to most environmental allergens. In between visits, I was doing my research. I started to Google things like “stretch marks inner thighs” and eventually came across the word “Cortisol”. Then Googling Cortisol, I eventually came across “Cushings”. I started to read the symptoms and began to notice that the majority of them were exactly what I had. The “moon face”, the “striae”, the “central obesity”. Then I realized how bad my sleep was over the passed few months. I thought it was just me being anxious about work, because I would wake up VERY early in the morning and wouldn’t be able to fall back asleep, so I would just get up and make breakfast and hop on the computer. Then I remembered the headaches I’ve been getting, or how tired during the afternoon I’d be. I was starting to make sense.

So one of the visits with allergist, I figured I’d mention the research I was doing. I asked the doctor if he was familiar with the disease. He said he definitely is. I showed him how different I looked a few months ago, and showed him my stretch marks. He was pretty shocked to see, but said it could just be from just eating bad and not exercising enough. I asked him if he could get me a blood test to check my Cortisol anyway. He said absolutely and sent me to a lab a few blocks away. I was very much expecting to see high cortisol levels. Like a fool, I went right after my appt with him, so the blood was taken around 12PM. I didn’t realize then that cortisol should be drawn around 8AM, but anyway…

The next time I came in to see him, he gave me the results. He said “You wanted to know if your Cortisol was low, right?” I said “No, I wanted to know if it is high.” He said “Oh…well, yes, they are a bit high.” He did mention that the RX said for me to have them taken in the morning and was kind of mad that the nurse didn’t notice that and say to come back in the morning. He said they could be high because of the time of the day and maybe the stress because of what I thought was going on. I knew now that I had to take these results to an endo.

This is when I started to mention things to my parents. They knew I was seeing the allergist and I have already talked to them about the cortisol and cushings, but I didn’t really get in depth. Once I had this blood taken, I knew I had to let them know what I think is really going on. I explained that the disease is caused by a tumor in the brain, or in your adrenal glands and they thought I was talking crazy. I was looking for local endos and found one not too far from me. When me and my mother first met with him, I knew instantly I wasn’t going to like him. It seemed I had to introduce myself before he even said anything. When I explained what I thought was going on, having Cushing’s and all, he said “You don’t look suspicious of Cushings at all.” He mentioned that the disease is VERY rare and that he has only diagnosed it about two times in his career. He looked my stomach, the back of my neck and said that when people have moon face, you usually see fatty deposits by the side of their eyes. As much as I didn’t want to hear I have Cushings, I wanted a solid answer to what is going on. He didn’t even ask to see the stretch marks when I mentioned them. He said, “Yes your cortisol is high, so we will do further testing.” I took home the urine test and also had a few blood tests done. Very anxious at this point, a few days passed and we came to see him again. Just as I thought, very high cortisol levels. He seemed very shocked and pretty much stated that Yes, I do have Cushings. He then wrote up multiple RXs for me to have done. An MRI, a CT scan, a chest scan. I was beginning to get pretty nervous. He explained how the disease is very complicated to diagnose and to find where the excess cortisol is coming from exactly. I was becoming very knowledgeable at this point and knew it wasn’t going to be an easy process.

Things started to get a little ‘different’ around the house and with my relationships. I’m actually a triplet and 1 of 3 children. My brother and I are very close, but not so much with my sister. My brother knew what was going on, but didn’t really know much about the disease. I would tell him and explain to him, but not really sure if he was even listening much. My dad was starting to get involved with things and becoming supportive of the changes. I was getting depressed with how I look and felt, and thankful my girlfriend was still away, even though I could’ve used her support…I just didn’t want her to see me like this. Things started to become pretty stale with her and my health was becoming more of a priority. I told her what was going on, but she hardly understood. So I started with the CT scan.

The doctor suspected the tumor to be found my in adrenal glands. Unfortunately, there was nothing to be found. The doctor then took some more blood work and realized that we should be looking in the pitutary. I then had an MRI done. At this time I receiving help from the whole family. My aunts and uncles were doing some research too, looking for better doctors. We live on Long Island, New York…so Manhattan is just a small trip away. It’s said that the best doctors around here are located in NYC. My mom found an endo by the name of Eliza Geer at Mount Sinai Hospital in Manhattan. We were lucky enough to get a appt rather quickly. We were still waiting on the results of the MRI at this point and recieved them the day of the appointment.

We took them to Dr. Geer. Now this Dr. is no ordinary endo. She actually is VERY familiar with the disease and runs a research study on Cushing’s on “Body Composition and Metabolism” in Cushings patients. Immediately, we knew were at the right place. She took a look at all the blood work and could most definitely tell that what is going on is definitely Cushings. She was very impressed with me that I was able to basically diagnose myself, and asked me if I was studying in the medical field, hah. She knew that there was no need for more testing, but now just to figure out the source. We gave her the CD with the MRI results but she had trouble getting the images to show up on her computer. She asked that if we could wait a bit longer, that we could meet the neurosurgeon that she works with, Dr. Kalmon Post, and we would look at the imaging together in his office. Feeling pretty good about the new doctor, we waited a bit in the lobby until they could both see me again. During the wait, I dozed off, but woke up to my mother and aunt talking to a lady in the lobby. She was with her son. After some conversation with her, they found out that he also had Cushings, and has been going through it for several years. He is 20, so a few years younger than me. My aunt asked if it was okay to exchange emails, so me and him have actually been in touch since our surgeries.

Anyway, it was finally time to meet both doctors. Feeling very nervous and anxious, we sat with them and he explained a little more about the disease, and the complications of the surgery, etc. He made a joke about my rosy cheeks and it actually made me feel a bit comfortable with him. He also said how the reversal of the symptoms almost seem magical. I was beginning to feel really good about him as well. He said that he does pituitary surgeries multiple times a week. He then opened the CD and we all looked at the images together. He explained that when there is a distinct tumor found, you will see it quite easily and explained how it would make the gland look in the scan. Unfortunately…we couldn’t find anything. He explained that at this point it could so small that it may never show up on the scan, so he never wants to go into the gland and begin any sort of surgery without being 100% positive that this is the source of the problem. He then explained that there is procedure that completely confirms where the source is…”Inferior petrosal sinus sampling” It sounded pretty strange to me, but I knew it had to be done. As soon as we left his office, we made an appt with Dr. Patel to have the IPSS done ASAP.

A week later we were back for the procedure. What a strange procedure…but all went well. The results came back telling Dr. Post that it’s time for surgery. I think it was another week or so later that we made the appt for my first surgery on May 6th 2013. Both anxious and excited, I was more that ready to get this done and over with. My surgery was late in the day, so I wasn’t in recovery until I think about 6pm and then in my hospital bed until about 8pm. I remember my endo coming to see how I was feeling, as well as my surgeon. Knowing that I was supposed to be feeling flu-like symptoms, I was honest and said that I felt okay. My parents spent the next few hours with me until they had to leave. Unfortunatly, I was not feeling any sort of crash, but just very uncomfortable from the darn nasal-tampon in my nose. The next day the blood results came back from after the surgery and my cortisol levels were still very high. Disappointing news, but pretty much expected. I think they were 77. Though, the doctors mentioned that a second surgery is common and that the levels may be high because of the time of the day. We still kept our fingers crossed that they would still be dropping over the next day. They did come down ALOT the next day, but not in a normal range. I was sent home on the Hydrocortisone, incase that they would continue to drop, though I wasn’t very optimistic at this point. The pathology report did come back that whatever he did remove was all tumor, so that was good to hear.

Still feeling the Cushing-like symptoms over the next few days, I took my week later blood work again just to find out that the cortisol levels went back up. My endo said that I am going to need another surgery. I remember my surgeon explaining how he wants to be as gentle as possible when messing around with my pituitary, to make sure no damage is done to it. So I understood that maybe there is some tumor cells left behind and this time he will get the job done. We were lucky enough to schedule the second surgery only about a week or so later, with a very early appointment (May 20th).

Right before the surgery, the surgeon came to me and my mother and mentioned “Hyperplasia”. He said it’s very rare, but there is a chance that my gland is what’s producing the excess ACTH and not a tumor. He said is going to try his best to determine that and continue to remove any abnormalities he see, as aggressively as he thinks he needs to be. A few hours later, waking up in recovery I felt crazy anxious. I couldn’t stand the oxygen mask so I removed that after a few minutes. I could not wait to be in my bed. Unfortunately, again, I was not feeling the crash. Disappointed again, we were giving it time and hoping again that there were just a delay in the levels dropping. The next two days passed, and my levels were still a bit high. I saw both my surgeon and endo before leaving the hospital, and we spoke about other treatments at this point, but obviously we were going to wait on the near future cortisol results before moving forward with anything else. Me and my family were pretty devastated at this point, but my parents were still being optimistic. Not able to understand how this “amazing” doctor was having a hard time curing me and why it has to be so complicated for me was beyond everyone at this point. Sent home with HC again, everyone was praying for a drop in the cortisol levels. My doctor had me get my blood taken that following Friday with STAT on it. I spent most of that day with anxiety attacks and tears, over the fact that I just didn’t know if I was cured or not. I was feeling pretty dizzy and sick to stomach…but didn’t really noticed that UNTIL…

I received a call later that day from my endo. She first asked me how I was feeling. I told her very anxious and pretty dizzy. She responded with “Good! Because your results came back and your cortisol is at 12.” My parents both jumped up (I was laying in their bed between them…yes, I felt that awful about everything going on) in shock and awe. I was shocked to hear good news for once. She said to continue the HC and that we will be doing follow up bloodwork in about a week. The next blood test approached, with prayers that it would be even lower or at least hopefully in a normal range. This time the levels were a LITTLE raised, to 18…so my doctor felt that at this time we can begin to taper the medication since my levels are indeed high, yet still in a normal range. At this point, we believed that I am in remission and on my way to recovery.

A week later, we went for the two week follow up with both the surgeon and endo. We were able to meet with both of them at the same time. Both doctors said that I am starting to look less cushing-oid, which was relieving to hear. My endo explained that because of the surgery, my Thyroid and Testosterone levels are also a bit low, and that I’d have to go on replacement until both levels are normalized. I figured that this follow up would only be to talk and go over a few things, with not any real results or new good news, but I was okay with that. Though, we did have an interesting conversation with the surgeon.

Dr. Post, the surgeon wanted to explain what was going on with this pathology report. He is known to be one of the top neurosurgeons in the country and has done thousands of pituitary surgeries. He said that I seem to be a very perplexed case of Cushings. From what he can see when he performed the surgery is that the abnormalities do NOT look like tumor cells, but that the pathologist insists that what they look like to them ARE tumor cells. Because of the confusion, he is having my pathology report results sent out to other surgeons and pathologist for further questioning. At this point, he feels that the abnormalities that he removed are indeed abnormal pituitary cells, or Hyperplasia, like he explained to me and my mother before performing the second surgery. From how it sounded to me and my parents, that treatment for Hyperplasia is pretty much the same and that if all of the abnormalities have been removed, then I should be cured. He did also say that during the second surgery, he removed a lot more abnormal cells than he did the first time. Knowing that I perplexed one of the best surgeons in the country, we all felt a bit confused and a little down about things. We spent the rest of the day in Manhattan and headed home trying to keep our chins up.

Well, today I think has been about 2 weeks from the follow up, and almost a month from surgery. I’d like to say that I am seeing changes with my face, but it’s really hard to tell, though everyone around me is saying that I look fantastic. I can’t seem to get rid of the awful bloat belly, though. I have been going to the gym with my cousin for a week or so now, since my body has been feeling ALOT Bbtter than it has the passed couple months.

Last week my endo was away for the week, and being that I have been feeling better, she decided to give me the week off from blood work, which was relieving. I finally received my Thyroid RX yesterday and began it today and will be getting the Testosterone tomorrow. I got a call from my endo today and she is having me get blood work for my cortisol this Thursday. I am praying everything is normal and that I can continue to ween off the HC even more. I’d also like to mention that I going to see a laser dermatologist tomorrow for a consultation to see what can be done about the hideous stretch marks that my legs are covered in.

So it seems at this point I still am not 100% positive that I am in remission and this Thursday’s results should give us a pretty definite idea. I think this just about covers everything you guys need to know about me and my journey and battle with Cushings. I’m sure there’s so much I left out, though I am sorry it’s such a long introduction. I do feel my story is quite unique, being that I basically diagnosed myself and caught the symptoms so quickly. Please, if anyone has any questions or anything they’d like to discuss, PLEASE feel free to post back. It looks me DAYS to finish this and about 6 drafts that I started over a month ago when I was going to introduce myself to you guys before my surgeries…just was never able to bring myself to finish.

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ORKitty, Pituitary Bio

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Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

Adrienne, Steroid-Induced Bio

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Another Golden Oldie.  The last update Adrienne submitted was October 7, 2005.

~~

I recently wrote this and thought it is pretty good for a bio as it explains the diffrent types of diagnoses and problems I have, and not just Cushing’s. I can get very technical in my writing but this is not. Somehow, I find enough brain power to write; and since it’s been so long since I was first diagnosed with Cushing’s, I do know a lot of meds, etc. And kidneys. Ha. Always happy to help see email at bottom. Thank you MaryO!

I. In the Beginning

I’ve fought against this for so long that now, at the precipice of acceptance, I am reluctant even to write the words that are playing havoc with my mind. Three words, or one if you prefer the modern version- well, in a minute. I can’t say them yet.

Asthma before-after

Asthma before-after (Photo credit: Wikipedia)

For the past eleven years I have been dealing with the mental effects of my illness. The illness and mental manifestations began as soon as I ingested my first corticosteroid pill while living in Indiana in 1994. Given to me for severe ‘adult onset asthma’ the steroids were the result of many emergency room visits, failed ‘breathing treatments’ for said asthma, and most probably the doctor’s unwillingness to be ‘bothered’ with such a common ailment as asthma and as such not inclined to research my symptoms further. I had never had any signs or symptoms of asthma in my 22 years of active living. I loved hiking, tennis, volleyball, basketball, you name it, I most probably did it at least once.

During this time of breathlessness and pain from breaking two ribs while violently coughing, I became severely depressed. I didn’t recognize it at the time, at least not until the asthmatic symptoms receded (due to the steroids or simply time, I do not know). I had been working three jobs for the holidays, one more than usual. I was a typical workaholic in low-paying dead-end jobs as was fitting my age and lack of degreed education. I quit all three jobs, hoping to move out of state to stay with my father for a while. I wanted a change, I was still on the steroids, was still sick and growing increasingly scared. I didn’t want to move back home to my mother in California: I felt she had had enough of me and deserved a break.

With my truck packed and my three jobs no longer a worry, I was all set to leave. I was looking forward to getting to know my father better. But the night before I was to leave, my stepmother called and said it just wasn’t a good time to come stay with them. My father had broken his ankle and was undergoing extensive surgery and therapy; but all I wanted was to be with him. I was not just discouraged from visiting, but was told in no uncertain terms that I was not welcome ‘at this time.’ I was devastated.

I moved in with a friend and I just lost it. I stayed for days on end in my bedroom, my only companion my cat, Fantine. When I wasn’t sleeping, I was writing feverishly on my old Brother word processor. I wrote the most horrible things- stupid stories, neurotic thoughts and poems. There was no internet for me at the time; no way to research information on my symptoms and medications but for the public library, which I didn’t even consider visiting as it involved leaving my bedroom. I even answered some personals and went out on two dates- something I would never normally have done. What a disaster! So much for going out… I became even more solitary.

It’s important here to note that I was once considered quite stable. Unlucky in love and a poor judge of men in general, still, I was happy on a day-to-day basis. I smiled at everyone, I laughed– I mean really laughed– regularly. I was considered ‘bubbly’ if not downright ‘giggly.’ In fact, ‘Giggles’ was my nickname! I had nearly forgotten that. I always saw the positives in any given situation, I never was depressed or sad. Well, almost never. I really enjoyed living; I got up each day with a can-do attitude. I cheered up those around me and was the optimistic one in my family as well as among my friends.

Those three words… nope. Forget it. I’m not even close to being able to write them here. Not yet.

Back to Indiana, where each day seemed bleaker and more hopeless than the one before. I broke out in hives on my face, upper arms, neck and chest. The hives stayed for eight years. Each day I tried to go without my steroid pill; and each day I went a little bit crazier. A little bit more depressed. A great yawning chasm seemed to exist between me and the rest of the population. My friends were worried about me, but not really worried enough to intervene as they didn’t really care about me. All they could see was that I was no fun anymore. Pity.

I stopped going to nightclubs which I once enjoyed. I lived on macaroni and cheese and soup from a can, barely eating enough to survive and always when my roommates were out of the house. I began to take more steroids to combat the hives, as were prescribed by doctors, never knowing that they were slowly killing me. The depression was so severe that if my roommates were in the house, I would urinate into a cup and keep it in my closet to dump out once they left. And at the time, it didn’t really seem crazy to me!

My image of myself really took a nosedive; my hives were hideous. I had always been complimented on my flawless complexion. I tried everything the doctors gave me, never thinking that the cure was so much worse than the symptoms. I was suddenly gaining weight, yet I honestly was eating less than I had before these symptoms began. I just figured that since I was no longer exercising the weight gain was to be expected. My hair had always been wavy and full of bounce, but it started to get curly- really curly. In the span of two months, I no longer recognized myself in the mirror. I remember removing the mirror from my room and never bothering to approach the one in the bathroom.

I eventually took a job with a do-it-yourself warehouse as a head cashier. I had to pay for the new truck I had and my roommates were the most fiscally irresponsible people I have ever known, so I had to earn a living. Unfortunately, I was too far behind to ever get ahead and knew that I needed to go home to my mother because I was just getting sicker. I had no energy, I slept whenever I wasn’t at work. I was having trouble concentrating, had problems with coworkers as I was a bit- how shall I say- ‘pissy.’ Conversely, I would break into tears for no reason. But the day I was to drive back to California, my truck was repossessed. I booked a flight, packaged up my boxes for cargo shipment, and was gone within a week.

What followed were two years of emergency room visits for ailments I had no previous experience with. I was gaining weight still, I had hives, headaches and such a deep sadness I didn’t know what to do, where to turn. So, I just continued on the path of work. Work had always seen me through the day; work took up the hours, made me feel needed and like a responsible citizen. Through it all, I continued to take the steroids, eventually upping the dosage according to how I felt each day.

The better jobs I landed, the better medical insurance and more willing I was to submit to seeing specialists. I had been misdiagnosed as having SLE (Systemic Lupus Erythematosus); FMS (Fibromyalgia Myofacial Pain Syndrome); and being just plain old crazy. My symptoms were starting to range quite literally in the dozens, and the list only grew as the years passed. (I was going to post it but chickened out- it’s mind-boggling, even to me).

Back to those three words. Nope, still can’t say them. Maybe tomorrow, when I shall continue my self-indulgent pity party. No, it isn’t even that: I’m trying to get to the heart of the matter but I’m taking the scenic route

II. Cute Professors and Straight Jackets

So, how about those three little words- am I any closer to disclosing them today? Maybe a little; I’ve thought of nothing else really. But for now, where was I?

I re-enrolled in college. A poor high school student, I excelled in college and enjoyed it immensely; especially the literature courses. There was this one professor too… ah never mind; this isn’t about him [giggles]. So, as of 1996 I was taking fifteen semester units of college coursework, working at least forty hours a week, and still trying to figure out what was wrong with my body. Then, the humdinger of all symptoms began worming its way insidiously into my life- the dreaded ‘uncharacteristic rage’.

It started out as simply ‘flying off the handle’ at the little annoyances in life but was so uncharacteristic of my personality that my family noticed. In fact, I was fired from a job due to this anger of mine. Sure, it wasn’t something that was said but I stayed on, daring them to fire me when I knew my position was not working out. I wasn’t working out. I saw a doctor, not a shrink mind you, just a normal primary care physician. He prescribed an anti-depressant, and even though I no longer felt crushingly depressed but angry he said it would help. And the medication did help; I was grateful for it because I hadn’t known such an angry existence since my marriage, and it scared me.

Who was I? What is happening to me? I didn’t have the answers, but I refused to give up looking for them. So, I continued my search for an accurate diagnosis by seeing all manner of specialists, and still no one knew what was wrong with me. The tests were getting too invasive and painful to be so well tolerated; I was losing hope. In fact, I think I gave up just a bit at this time; pushed it all away to a dark corner where I couldn’t see it staring me in the face.

Time passed in much the same way until the year 2000. I was firmly ensconced in a position of great authority (well not really- I was a high level secretary) at an ivy league college (yes, really). I loved this job! I finally had a position with very low stress, wonderful coworkers and a great boss. I had the perks that most people wished they had (free tea and goodies every afternoon, retreats to fabulous places, freedom to come and go as I pleased, all the time off I needed for appointments, and a helluva benefit package from day one). I ADORED the professors I worked with on a daily basis. The intelligence and wit of the staff, faculty and students was refreshing and really allowed me to be myself. I even got opportunities to edit books from the professors, something I considered to be extremely fun. And the money was the same amount I was getting practically running my former city’s IT department (my manager had a problem showing up to work and the ‘sys admin’s’ weren’t too brilliant on the day-to-day operations of the department, as you can imagine).

However happy at work I was, I continued to gain more weight. I was a little bit horrified and determined to exercise- and so I did. Rather, I tried. Everything. And nothing worked. Not only did I not lose weight when I should have, I was again out of breath. I had to use the elevators on campus, which was terribly embarrassing as most people on campus were young, fit kids (not to mention professors ) and I couldn’t even make a delivery to a symposium without frequent stops to catch my breath. By this time, I had a nurse who was frantically testing me for any and all ailments she could think of; she cared but still, nothing clicked. I was on about 15mgs of Prednisone then. Prednisone is the corticosteroid I was given; the one that still unbeknownst to me was killing me. Slowly.

Bet ya didn’t know I was half dead. Okay so it only thought it was going to kill me. Personalization of inanimate objects hmmm [scratches her head] uh-oh call in the cuties with the straight jackets if you must, but this is how I deal.

I’m really getting closer to uttering those three words… I really am.

III. He Didn’t MEAN to Forget Me

Now I want to shout the three words from a mountain top; I am tired of skipping around and through them. But I must bring this to the current day before I can do that, or those three words simply won’t mean anything.

My health came to a crises point, as such things eventually will, just four months into my wonderful job with cute professors and tantalizing bennies. For two months I had been in and out of emergency rooms, even going so far as to switch health insurance plans to try to get some decent care. It was said I had pyelonephritis, just a fancy word for a kidney infection. My kidney hurt so much, but I was used to such agonizing pain and continued to work while taking all the antibiotics I was given faithfully.

Soon the nausea, fevers and other signs of severe infection caught up with me and I went to the emergency room again, this time receiving an injection of a new, very strong antibiotic. The wanted to admit me but I refused. It wasn’t until the following week, about two months into the infection, that I allowed myself to be admitted. I knew it wouldn’t be fun and the tests were bound to be extensive because I only have one kidney. Yes, I had a congenital birth defect of extra tissue growth in my right ureter, the tube that drains to the bladder. I suffered through the pain of a diseased right kidney until, pregnant and in increasing pain at the age of sixteen, I was properly diagnosed and scheduled for surgery- but only three months after my daughter was born. That was fifteen years ago.

Nuclear imaging tests proved to be inconclusive, and no one knew what was causing such pain and infection in my remaining left kidney. A specialist was brought in from another hospital to assist the puzzled internists treating me. In the meantime, I was undergoing serious personality changes. I was angry, often belligerent and on so many medications for pain that I figured I just wasn’t myself. I was eventually given morphine, but it scared me because it didn’t work. Nothing would stop the pain.

I felt like I had ants crawling all over my skin; my thoughts were seriously disjointed, more so than would be expected with the medications. My family was scared of me, and for me. My doctor said there was nothing wrong with me, I was given every test in their charts and my kidney was fine- it was just a bad infection. But the medical history of my past was impossible for him to grasp, and he refused to consider that anything other than depression, weight gain and a kidney infection were present. He was only angering me to the point of boiling rage, so I completely ignored him as my mother fought for me. Apathy was my middle name, as I retreated to my own internal hell.

I hadn’t slept for than four days when my neighbor decided to play with my mind. At least, that’s what I thought at the time. Suffice it to say that after the Urologist specialist told me he couldn’t find anything seriously wrong with my kidney (but that he was concerned about my overall health), my mother bundled me up and despite my protests had me discharged. I wanted to stay and fight with the gang-banging girl next door. She woke me up from my first sound sleep in over four days! I was ready to kill her.

What had occurred while I was in the hospital was later revealed to me as an adrenal crises. In addition to that, I had a psychosis brought on by the adrenal crises, and a severe allergic reaction to the anti-nauseants used to keep me from damaging my kidney by throwing up so violently. It was also thought that my immune system was very weak from the years of taking corticosteroids (did you know they are used to shut down the immune system in transplant patients to prevent rejection?) At the time, I was truly as clueless as everyone else.

I went back to work for three days and it was obvious to everyone I wouldn’t be able to work until a proper diagnoses was found. I was exhausted; I had zero energy. My head was so fuzzy it felt like I was underwater, trying to do my job which was normally easy, yet suddenly seemed impossible. I couldn’t remember names, details, phone numbers even. I remember picking up the phone to call home and not knowing what the number was. They put me on temporary disability. Unbeknownst to me, I had the primo of disability plans and was to all concerned considered a professor, even though I was only a secretary! I was really too out of it to notice at the time how very lucky I was to have worked for such a generous establishment.

I continued to seek answers. I wasn’t given much choice in the matter because in order to continue to receive my benefits I had to be labeled disabled every two weeks. Oh the mountains of red tape I went through! On a return appointment to the internist who saw me in the hospital, I reached an all-time low. This doctor, one who is supposed to help or certainly to ‘do no harm’ said just one sentence to me, but it was a doozie. He said, “You have only to look in a mirror to see where your problems lie.” I wrote him a nice two page letter (faxed of course, then mailed) telling him exactly what I thought of his advice. He was so fired he was nothing but charcoal when I had finished with him.

But those words put me into such a deep, dark place; a place where only fears reigned, a place that I now consider to be the true hell. I was left without hope. I just felt useless. I had to give up my job, my beautiful apartment that I had worked so hard for, my freedom all but gone as I moved in with my mother. I was, oh, twenty-eight (I think).

With my mother’s help, I finally got an accurate diagnosis: Cushing’s Syndrome, exogenous. Such a rare disorder it is said only two in one million people in the world are diagnosed with it each year. All those lovely corticosteroid pills I was taking had caused my cortisol levels to be so incredibly high that my body’s endocrine system was shut down. Cortisol is essentially adrenalin, and without it the body cannot live. But too much of it and it shuts down the adrenal glands (remember, I only have one anyway as the other was removed with my right kidney many years ago).

This massively high amount of cortisol causes the body to be completely unable to regulate its own metabolism; resulting in excess weight gain, high blood pressure, diabetes and other such wonderfully fun symptoms that I’ll not continue to bore you with the details. Bottom line was, this was not my fault. Back in 2000 when I was diagnosed, the endocrinologist I was referred to ‘just to rule out an endocrine problem’ took one look at me and said, ‘You have Cushing’s syndrome.’ He said we’d do more testing to be sure, but I was a ‘classic case’ and need look no further to the answers I had sought since 1994.

But ah this wonderful doctor whom I adored made a very bad, bad mistake. This doctor put me on the corticosteroid dexamethasone to see if my adrenal gland would suppress the drug. But the drug ‘dex’ as we call it is five times as potent as the steroid I was already taking, prednisone; and he, uh, forgot to take me off the drug. The test is only ever run for a maximum of two days. In addition, the test should only be used for other forms of Cushing’s (like those that have brain tumors and adrenal gland tumors) and not for exogenous, or steroid-taking Cushing’s such as I have. I was on this highly potent drug for two months and it was killing whatever endocrine system I had left. It was later found out that the doctor was on loan from another hospital, and his mistake just caused me to receive an updated diagnoses- from exogenous Cushing’s to iatrogenic or ‘doctor caused’ Cushing’s. It is thought that without this mishap I would have recovered normally from the illness through the timely and slow withdrawal of the corticosteroids. As it was, it nearly killed me.

During this time, I was unable to sleep for more than one hour at a time, and for a maximum of three hours a day. This lasted for three months straight. Hard to believe isn’t it? Such sleep deprivation was not allowing me to recover. I was in constant pain from the extreme edema (swelling from water retention) that I was on painkillers around the clock. I gained a total of one hundred pounds in two month’s time; without overeating! I developed a hallmark symptom of Cushing’s: deep, purple colored stretch marks known as straie. The scars from this straie will always be with me. They are like potholes in my once smooth skin. The skin itself is thinned, like that of an older person.

Yes, I considered suing the hospital and the doctor that had complicated an already bad situation. Quite frankly, I just didn’t have the heart or the energy to do anything about it. Besides, he didn’t mean to forget about me. Right? Right. Too bad I didn’t know then what I know now.

I couldn’t get up from my bed because I wasn’t used to being big as a house, so I spent all my time on the living room couch. During my time on the couch, as I like to refer to it, I considered suicide. I had to rethink that as it completely went against all I knew and believed in, religion wise. It wouldn’t have been a nice thing to do to my mom either, the only one who always believed in me and was always there. Through the pain, through all the tears, she was there. She’s still there for me, every single day. My father helped me a lot in this as he too knew such extreme pain.

But this life wasn’t all it was cracked up to be if it could take a healthy, normal girl, and turn her into a decrepit old woman before the age of thirty. Right? I mean, what kind of justice is there in that? They even gave me a wheelchair and a cane when the steroids ate through the ball joints of my hips. Of course, I refused to use them. I still won’t. So, I had to find that justice; figure out why I got this illness, what I had to learn from it, so I could move on with living. This isn’t living you know- it’s existing. Surviving.

So, I withdrew into my mind to search for the answers. After all, I no longer had work to fill the hours with. I had to find something to do. I became obsessed with reasoning out my illness and my continued existence. I mean, people younger than me were dying from Cushing’s. Mother with four kids, kids… just people dying from something I had, too. It was and is such a sad motivator to live. I thought my past pain and subsequent healing from the removal of my right kidney was sufficient for one person to go through, but I realized I was wrong. So wrong.

Maybe now those three words have retreated just a bit; further into the back of my mind where they are safer for not having been spoken this day. A dear friend told me today that people would be touched by my writing this series. I don’t know about that, but I hope so. I think it’s pretty obvious I’m doing this for me but God knows I’m not the only one who can understand such soul angst. Through different reasons, and many seasons, we all remain able to learn from the hell that life can sometimes be. But then, this isn’t about my physical health, it’s about those three damned words.

IV. Revealed: Three Blasted Words

I spoke those three blasted words to someone very dear to me today. He wasn’t surprised; why did I expect him to be? I’m glad though. It was a hurdle; but on to the story.

Since first being diagnosed in 2000, I’ve been through a lot of changes. I have ‘latched’ onto people that have proven to be untrustworthy. Yes, I did that before but not to such an extent. I seem to lack the judgment I once had, unable to build it further as would befit my age. I haven’t ‘grown’ in ways I believe I would have without Cushing’s. See, I think the Cushing’s has tripped a wire in my brain- and I’ve no idea how to fix it. If I can. Or, if it will happen magically when I am well, or at least completely detoxed from the steroids.

Steroids are known to change the chemistry in the brain. They eat healthy brain cells, much as, say, marijuana will; hence the medically recognized states of confusion, memory loss and lack of concentration and cognitive abilities. If a ‘Cushie’ (which is what we Cushing’s patients refer to ourselves as, and consider an endearment) is in adrenal crises, psychosis can be present, and a confused state is the norm. An adrenal crises occurs when there is a sudden ‘dip’ of cortisol in the body, usually from a stressful event as the cushie body cannot distinguish from good and bad stress, and the body is not able to secrete hormones accordingly.

But this fascination with the inner workings of my mind is new to me. Not that I only just started looking within for answers without, but that I am aware of it. Aware that is isn’t quite… normal. I dismissed the doctors who once said it was ‘all in my head’ with good reason; it isn’t all in my head, it is real, this Cushing’s. But there’s more to it than that. This brings me to those three blasted words. Well, I really shouldn’t rush at this point. They’re coming no matter what (like a Mack truck head-on, more like).

Ah, what the hell they’re only words: ‘Manic Depressive Disorder’. ‘MDD’. Or, the one-worded definition ‘Bi-polar’. There. I said them. I’m crazy, in a way. Extreme highs and extreme lows: who would have ever thought what I’ve been feeling isn’t normal? Not I. It isn’t as easy as taking a pill to regulate the moods of this thing, because they don’t always work. I have no medical insurance. Still, I have found a good psychiatrist and shall pay to be labeled with this… this… ‘MDD’; because I can’t not be treated, now that I’m aware of it. I have to try to get better; try to be able to function on a more even keel. If not for myself, then for those who care about me!

I just never considered this. I always thought I was oh, you know, obsessive a little bit, compulsive a lot, and more introspective than most as my illness and solitary life demanded. But the evidence is conclusive, at least to me. My mind is not helping my health; such extreme highs and lows bring about their own stress, and my body already cannot function well without regulating good and bad stress on a daily basis. But I do know that I won’t continue to treat this as something that will one day go away; I need to be courageous in the face of such adversity and just deal with it. Being open about it is, I think, the first step. Perhaps, hopefully even, the hardest step.

And, so I am open. This… this angst-ridden pity-party writing is how I deal.

What else did you think the three words would be? [smiles]

AND, a little word [ha ha] about my struggle for Social Security:

Well I had my social security appeals hearing on July 15. So I think I can finally talk about it now. I first applied oh four years ago. I had to reapply two years ago or has it been three? Anyways. So I had been denied on paper four times to get to the hearing. I had appeared twice before the judge. Once, I wasn’t prepared and she said get an attorney. Second time, I had moved and lost my attorney so then I moved back she said go get an attorney I will reschedule you. So I did.

The attorney assured me she would get records that were more up to date. She did not do so. When asked if there was new information by the judge, she said no. Anyways, my diagnoses on paper are: Fibromyalgia (which I don’t have), Cushing’s Syndrome, Avascular Necrosis of both hips from steroids. Oh and glomolumerlonephritis something like that of the kidney. I don’t know if I have that, but my last doctor put it down on their paperwork.

So, the judge had an Endocrinologist on the phone to ‘consult’ her and had previously stated that he was only to help her understand the medical things, but that’s NOT how it turned out. I have never seen him before! He knows nothing of me. Her questions were really skewed. She was looking for documentation that doesn’t exist I mean COME ON I haven’t had medical insurance since 2002! How the HELL am I supposed to have MRI’s of the hips that are newer, xrays, all these tests do they THINK I’m made of money?

The endocrinologist wasn’t too bad. He said obvsiouly being given a dexamethasone suppression test for 4-8 weeks [I can no longer remember!!!] it had made my Cushing’s so severe and most of my problems could be attributed to it. He couldn’t at all understand how it happened but I told him- the doctor forgot about me and told me to keep taking the dex. I didn’t know any better. Then the doctor left the hospital, and left me.

He said according to my records my blood pressure was under control. Well it is NOW- I was hospitalized within the past year in CA and given emergency medicine to lower it as it was so out of control. How is THAT controlled? Oh but WAIT the records weren’t there that documented this. Wow- what a neat thing to find out.

My diabetes I should be on medicine for and I could go down on the steroids quicker, according to this doc who doesn’t know me. Huh? I only GET diabetes when I go down or up! Otherwise, giving me meds would only screw with the sugars. I cannot take their ferking Glucophage it makes my IBS off the charts no way, no how I’d rather inject insulin. I do think some injections when tapering might help but HOW I ask can I do THAT without medical supervison? I can’t. I’m not God!

He said I could work sedentary work. Ack ack ack! I told him of my extreme swelling but heck I guess if someone is dumb enough to hire my sorry ass then they could also give me an expensive fully padded ottoman like I have under my desk. To limit swelling. Not to mention that I’d have to call in sick about 99% of the time. Sure, I’m an employers DREAM.

But then he said I would have lifelong problems relating to the Cushing’s and steroid use. He doesn’t understand the kidney at all. The severe IBS is ‘controlled’ with Codeine even tho I told him nothing else works only codeine and I cannot take enough to control it really as it turns me into a zombie. Didn’t listen.

Said my hips when last tested were in stage I [thank GOD but that was 4 years ago!] and would likely progress as it usually does and I could expect lifelong operations. Like DUH, ya think?

But the whole problem was… the judge thought I have REFUSED to go down because I was using steroids like an addict. She asked the endocrinologist if anyone would use them recreationally AH HA HA HA! Maybe she thought I was using anabolic steroids? Yeah, I’m a jock all right. Sheeesh.

The Endocrinologist said with a giggle, “No. Can’t think of one person EVER wanting to take steroids.”

And my attorney? Basically, she said nothing. NOTHING. She hugged me at the end, and said she was sorry it didnt look good. Really? Ya think? I even spoke up for myself very respectfully and intelligently, but the bottom line is no one will listen to me; I’m only the patient.

I didn’t want their fliping money. I get a stipend until I’m 65 or no longer disabled from a private company. But NO ONE will insure me. I just wanted medical and dental. I need medical, I need dental. And I need a divorce. Erm nvm.

Appeal? HA HA HA I had to laugh at my attorney. Not with her sorry ass. She’s a nice lady folks but she doesn’t get paid unless I win. And I’m quite sure I did not, but will find out formally within ninety days. The evidence was what they wanted. I have had no doctor in my corner for two years. I have had to doctor myself.

All I can afford to buy are the main prescriptions I really need. Everything else… it just isn’t going to happen.

Ain’t life grand? It’s ok. I’ll get thru this. I want to go down now but I don’t want to get crazy in the head, or too exhuasted in the body before my sister comes down to visit me on 8/11. I’m looking forward to it.

How does anyone get disability without records??? I guess I could try on my newly diagnosed bipolarism. [shrugs]

UPDATE: I found an advocate. Waiting… to be formally denied. Current dosage: 20mgs. I went down. Yes! AND, I fixed my puter. Yay.

POEM: I’m a Fruggie Queen

I take big drugs and I can not lie
You normal people can’t define
The pain I got that makes me pop a pill cause I’m ill
Got codeine freaking me out
Dark dreams, blank stares and that ‘flat affect’
Cool for when I need to shut up
Talking everyone’s ears off
Normally ‘Speedy Gonzalez’
Stupid mouse doesn’t even do frugs
I mean drugs [eyes cross]

There’s serious frugs for days
Excruciating; pain unending. Stronger frugs
Endocet. Yeah
I take big drugs and I can not lie
How many druggies
Have fallen from doctor’s prescriptions
Fruggies I declare
Constantly cautioned for
Popping pills
But they’re so needed to drown out those

Normal people, un-frugged
Envious their vitamins
The only drugs they take, their bodies, minds, whole
My neurons forcing more
Drugs when I once needed none
Ability to function impaired
Big drugs can not lie; their purpose not evil
Lucky you, I see
Frugs really aren’t funny.
Oh well. I’m a fruggie queen, what did you expect?

POEM: Red Tape Kills

I exist on self-enforced life support, but I’m not dead.
Each day dutifully swallowing poisoned pills.
Heart and mind- basic functions- supported in this life not fully led.

Finding joy in once normal things, hopes for a life ahead.
Bottled dreams deaths only antidote, my anthem is still:
I exist on self-enforced life support, but I’m not dead.

The world whizzes past me, medicated.
So weakened, even fun is exhausting. Pain alone enough to feel
Heart and mind- basic functions- supported in this life not fully led.

Stubbornness saves me, as I will not dictate my life from Death’s bed.
Good intentions rarely enough for others to see what’s painfully real-
I exist on self-enforced life support, but I’m not dead.

Without insurance, there’s no doctor’s guidance, no caring if I live or die. Med-
students know nothing of my complexities- they simply write on my unpaid bill:
Heart and mind- basic functions- supported in this life not fully led.

Without my knowledge and persistence, my epitaph would read instead:
Here lies Adrienne- So young, such a shame. Left behind a hill of bills. Red tape kills.
I exist on self-enforced life support, but I’m not dead.
Heart and mind- basic functions- supported in this life not fully led.

I have TONS of writing, mostly about Cushing’s. If you’re interested, I am usually known under the following link at All Poetry:
http://allpoetry.com/AdrieWonky

Regular email addy is: fayrenysa-boards@yahoo.com

Update October 7, 2005

I have received a very basic health plan insurance through my state. It covers appointments and medications which is more than I’ve had these last three years, so I am happy. I do not know that it really covers hospitalization or many tests, but we shall see.

When I was at the urgent care for pneumonia last week, the doctor there told me where the nurse that I love is now practicing. He helped me get off a lot of medications that were hurting my kidney and since, I have been had fewer infections and almost no kidney pain. He quit his old practice I was seen at about one and a half years ago; I was never able to find him again.

Anyways, he opened up his own medical clinic complete with internist, and two other doctors. So, I called my disability worker and she told me to ask what plan the practice takes. So I called my nurse’s office and left a message to see what plan he accepts, and he called me RIGHT back. He was SO excited to hear from me. He said he’s been putting ads in the local newspapers in hopes I would find him (and other patients of his, of course). Knows the doctor I saw that gave me his card. He would love to treat me.

Told me to ask for the ‘family care’ plan so I called my disability worker back and I’m all setup (they just have to do the paperwork)!!! I made an appointment with my beloved nurse for 10/25/05. I cannot believe I get to go to a doctor and have meds again for nothing! Well, some are 3.00 and others are 2.00. And he knows Cushing’s of course and he looks forward to treating me. How… wonderful a feeling that is to hear. He is a nurse by choice; the practice is his. He has over 25 years in the medical field; we talk medications like two old friends. I’m so happy!

I change names often, so I will just update this as I can. My current website address link is: http://allpoetry.com/poets/Fix%20it%20Fae. I write there. Some funny, most sad. Lurkers welcome lol.

Marianne, Cyclic Cushing’s Bio

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I was diagnosed with Cushings in 2005 after 10 years of living the nightmare.

My first symptom was a 30 pound weight gain in 1995 over only 3 weeks.  My MD told me to go on a diet. At the time I had whooping cough and was bed-ridden and not eating anything. I thought it was my thyroid, which I had problems with since giving birth in 1983.

I was diagnosed by my endo, who soon after became my primary physician as well. It was very hard to diagnose the Cushings as it is cyclic, but finally in 2005 a dexa test finally showed up. We had tried everything at that point.

I did have pituitary scans; the first time showed a microadenoma of about 5mm in the left lobe. When he repeated the test that was gone and there was a 2mm one on the right side. That too disappeared, but at the time I was going to healing masses often.

We cannot find the cortisol producing tumor, so we just try to keep me calm and address the symptoms to make me as comfortable as possible. The ONLY symptom I do not have is the striae, but I have every other one including the lovely moon face, hump back and GASP whiskers.

Thank the Lord God above for tweezers and hair removal products!

Jean (Jinxie) Cushing’s and Acromegaly Bio

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This bio was originally posted 1/26/2008

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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]

Aimee, Daughter of an Adrenal Patient

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Aimee’s story was originally posted 2/7/2008 at http://www.cushings-help.com/aimee.htm.  The email address may no longer work.

 

I am the daughter of a Cushing’s patient who is workning on her BLA and switch. My mom is not always able to be on line, but is very interested in the networking that this site offers. So for right now I am the deligate and the Patient advocate whenever she is in the hospital.

Mom’s (Pat) history is complicated and lots of different turns have taken place. She was diagnosed very late into her case and has often had the worst of what can happen happen. A true trooper through it all but she is starting to really lose the desire to fight and yet more and more is happening. So I am hoping that the networking will help give her the little boost that she needs.

The brief run down: diagnosed Cushing’s, Pituitary surger (no tumor found), gama knife surger, chemical treatment, 4 – 5 years of sitting on the edge and then 4 years building back up to full blown Cushings.

Now she is have BLA in Feb. 08 and we are hoping to move forward. During the time between full blown she had 2 back fusions (1 did not take and will have to be redone) 2 knee replacements, and an assortment of other stuff. So as you can guess he poor body is worn out and ready for a rest.

Email Aimee

Golden Oldies

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On the days that there are no new bios, I will repost some of the older ones to here from http://www.cushings-help.com followed by those on http://www.cushie.info so that they will all eventually be here.

When I know the original date, I’ll add that to the posts.

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