An MRI showed a hormone secretion on my pituitary gland. It was removed in June of 2020.
Things went well and I resumed life as normal.
Well a followup last month with blood work showed a possibility of reoccurence. I will be getting an MRI next week to confirm.
I don’t have “typical” symptoms but mine presents more like PCOS. My endocrinologist previously was convinced that’s what I had. Then an act of God changed her mind to order an MRI. Had she not I was perscr9bed metformin and told to follow up in six months.
I’ve never talked with anyone with Cushing and was excited when I found this site. Look forward to getting and giving support with fellow Cushings survivors.
After 2 failed pit surgeries and a CSF leak repair,
BLA on Sept. 11, 2008 w/Dr. Fraker at UPenn
Gamma knife radiation at UPenn Oct. 2009
Now disabled and homebound. No pit, no adrenals and radiation damage to my hypothalamus.
My cure is God’s will, and I still have hope and faith!
During her too-short life, she provided help and support to other Cushies.
Hi y’all! I will try to make this short, but there is a lot to say.
I stumbled across this board after a google search last night. Yesterday, I finally saw a real endocrinologist. I am 39 years old. I weigh 362. I was diagnosed by a reproductive endocrinologist with PCOS at age 30, but all of my symptoms started at age 22.
At age 22, I was an avid runner, healthy at 140-145 pounds and 5’7″. I got a knee injury and stopped running right around the time that my periods just….stopped. And by stopped, I mean completely disappeared after mostly regular periods since age 12. I was tested by the student health clinic at UGA, and referred to an obgyn for lap exploration for endometriosis, which was ruled out. I remember that they ran some bloodwork and ultimately came back with this frustrating response: We don’t know what it is, but it’s probably stress-related because your cortisol is elevated.
Soon thereafter, I gained 80 pounds in about 6 months, and another 30 the next six months. Suddenly, in one year, I was 110 pounds heavier than my original weight of 140. I recall my mom and sister talking about how fast I was gaining weight. At the time, I blamed myself: I wasn’t eating right, I’d had to stop running due to the knee injury and my metabolism must have been “used” to the running; I was going through some family problems, so it must be that I’m eating for emotional reasons related to depression. You name the self-blame category, and I tried them all on for size.
Whatever the reason, I stopped avoiding mirrors and cameras. The person looking back at me was a stranger, and acquaintances had stopped recognizing me. A bank refused to cash my security deposit refund check from my landlord when I graduated because I no longer looked like my student ID or my driver’s license. I was pulled over for speeding while driving my dad’s Mercedes graduation weekend, and the cop who pulled me over almost arrested me for presenting a false ID. These are some really painful memories, and I wonder if anyone here can relate to the pain of losing your physical identity to the point that you are a stranger to yourself and others?
Speaking of size, from age 24 to 26 I remained around 250, had very irregular periods occuring only a few times a year (some induced), developed cystic acne in weird places, like my chest, shoulders, buttocks (yikes!), found dark, angry purple stretch marks across my abdomen (some of which I thought were so severe that my insides were going to come out through them) which I blamed on the weight gain, the appearance of a pronounced buffalo hump (which actually started at age 22 at the beginning of the weight gain), dark black hairs on my fair Scottish chin (and I’m talking I now have to shave twice daily), a slight darkening of the skin around my neck and a heavy darkening of the skin in my groin area, tiny skin tags on my neck. I was feeling truly lovely by graduation from law school and my wedding to my wonderful DH.
At age 26, I ballooned again, this time up to 280-300, where I stayed until age 32, when I went up to 326. The pretty girl who used to get cat calls when she ran was no more. She had been buried under a mountain of masculined flesh. I still had a pretty, albeit very round, face, though. And I consoled myself that I still have lovely long blonde hair — that is, until it started falling out, breaking off, feeling like straw.
At age 30, I read about PCOS on the internet and referred myself to a reproductive endocrinologist, who confirmed insulin resistance after a glucose tolerance test. I do not know what else he tested for — I believe my testosterone was high. He prescribed Metformin, but after not having great success on it after 5-6 months, I quit taking it, and seeing him. Dumb move.
Two years later, at age 32, I weighed 326. In desperation, I went on Phentermine for 3 months and lost 80 pounds the wrong way, basically starving. I was back down to 240-250, where I remained from age 33-35. After the weight loss, I got my period a few times, and started thinking about trying to have a baby. Many ultrasounds per month over a few months revealed that I just wasn’t ovulating. I decided to put off starting the family when the doctor started talking about IVF, etc. It just seemed risky to me — my body, after all, felt SICK all the time, and I couldn’t imagine carrying a baby and it winding up to be healthy.
At age 35, I ballooned again, this time significantly — from 240 to 320 in the space of 6 months. Another 45 pounds added by age 37, so that’s 125 pounds in two year. I’ve remained between 345-365 for the last two years, depending on how closely I was following my nutritionist’s recommended 1600 calorie per day diet….which was not all the time.
Which takes me to last year. I went for a physical because I wasn’t feeling well, kept getting sick, had a lot of fatigue, weird sweating where my hair would get totally drenched for no reason. At this point, I was diagnosed with high blood pressure, hypothyroism (which has now been modified to Hashimoto’s thyroidis), high cholesterol (although this was present at age 30 when I got the PCOS diagnosis). I went back to my repro-endo, and resolved to make myself stay on Metformin this time. All last year was a series of monthly blood work and attempts to lose weight with an eye toward trying to get pregnant this year. By the end of the year, I was successful in taking off only 20 pounds, and my repro-endo (always with an eye toward fertility and not health), really pushed me to give up on losing weight at that moment and to start taking Clomid. Or else, he said. The words that broke my heart: this may be your last chance.
So, skip forward to January 2006. My ovaries are blown out and they are clear — no blockages. I get cleared to start fertility treatments. My husband undergoes his own embarrassing tests. I think we have an agenda here, but my mind was chewing on serious concerns that I was simply too unhealthy to be considering trying this. That, and I felt it would be a futile effort.
By the way, more than a year on the Metformin with no real changes to anything. Why doesn’t my body respond to it like other people with PCOS?
Then late March, I started experiencing extreme fatigue. And I’m not talking about the kind where you need to take a nap on a Sunday afternoon to gear up for the week ahead (which I’d always considered a nice indulgence, but not a necessity). I’m talking debilitating, life-altering fatigue. It didn’t start out right away to be debilitating — or maybe I just made the usual excuses as I always do relating to my health: I’m still getting over that flu/cold from last month. I just got a promotion at work (though I note a greatly reduced stress and caseload now that I am a managing attorney. My weight is causing it. Whatever.
I let it go on for a full two months before I started to really worry, or admit to myself that my quality life had taken a serious downward turn. You see, despite my weight and my scary appearance, I have always been the “director” type. By that I mean that last year, I worked with two other women to direct 100 volunteers to start a summer camp for inner city kids, and I had enough energy to run this ambitious new project and to film, produce and edit a 30 minute documentary on it by the end of the summer.
In contrast, I had to take a backseat this year. I basically sat in a chair and answered the questions of volunteers, made a few phone calls here and there, and was simply a “presence” in case something major went wrong. Such a major change from the year before, where I was running the whole show 14 hours a day and loving it.
But I am getting ahead of myself. (Is anyone still reading this? I must be narcissitic to think so….yet, I wonder if anyone else has gone through a similar progression….)
Back to May. After two months of this fatigue, I change to a new primary care physician and get a whole workup: blood, urine, thyroid ultrasound, cardiac stress test, liver ultrasound when my enzymes, which had been slightly elevated, were found to have doubled since January. Appointments with a gastroenterologist, and FINALLY….a REAL endocrinologist. Ruled out any serious liver problems (and my levels, surprisingly, dropped back to the slightly elevated level in a space of 3 weeks and no treatment).
Yesterday, I heard a word I’d only heard spoken once before in my life: Cushings. Way back when I was 22 and had started gaining weight so rapidly, I had a boyfriend who worked the graveyard shift at the local hospital. He spent the better part of a non-eventful week of nights pouring over medical books in the library. He excitedly showed me the pages he’d photocopied, which had sketches of a woman with a very rounded face (like mine), striae on her stomach (like mine), abdomenal obesity (like mine) and a pronounced buffalo hump. Although my former boyfriend was just a college student working his way through his music degree by earing some money moonlighting as a hospital security guard, he was the first one to note all of these tell-tale signs.
When I got my diagnosis of PCOS, I remember discounting his amateur diagnosis, and I never thought of it again.
Until yesterday, when my new endo asked me if anyone had ever tested my cortisol or if I’d ever done a 24 hour urine test. I said no, and he started writing out the referral form along with like 15-20 different blood tests. And although we’d started our appointment with him telling me he agreed with my repro-endo’s encouragement to go ahead and try to get pregnant if I can, by the end of the visit, he was telling me not everyone is meant to be a parent, there is always adoption, etc. The only thing that happened during the appointment was that I gave him my basic history of weight gain, described the fatigue, and let him examine my striae, buffalo hump and legs (which were hidden under a long straight skirt). The question about the urine screen and corisol came after this physical exam, during which he was taking lots of notes.
Then the word, which was not spoken directly to me but to his nurse practioner as I was making my two-week appointment in the reception area outside the examining room: “She looks classic Cushings. I’ll be interested to get those results.”
Cushings. Cushings. No– that’s not me. I’m not that weird-shaped, hairy, mannish-looking, round-faced, hump-backed creature my boyfriend had shown me a picture of 16 years earlier. I have PCOS, right? It’s just my fault. I don’t eat right. If I’d just eat better, I wouldn’t be 2.5 times my weight in college. Right?
I quickly came home and did an internet search. Within an hour, I was sitting in front of the computer, reading some bios here and BAWLING, just crying some body-wracking sobs as I looked at the pictures of the people on this board. Here, here (!!!!) is an entire community who has the same, wrenchingly painful picture-proven physical progression that I went through. The same symptoms and signs. Words of encouragement — of….hope. I didn’t feel scared to read about the possibility of a pituitary tumor — last year, I had a brain MRI of the optic nerve because of sudden vision irregularities, headaches and shooting eye pain. The MRI showed nothing, but then again, the image was not that great because I had to go into the lower-resolution open MRI due to my size.
I have no idea whether I have Cushing’s Syndrome or not, but these are my first steps in my journey of finding out. After living my entire adult life with an array of progressive, untreatable, brushed-off symptoms (and years of self-blame for depression, obesity, becoming so unattractive), there was a major “click” as I read this site, and a sense of relief that maybe, just maybe, what I have has a name, I’m not crazy/fat/ugly/lazy, the PCOS diagnosis, which has gotten me nowhere is incorrect, and I might have something TREATABLE.
So, without going so far as to say I hope for a diagnosis, I am hopeful for some definitive answers. If my urine tests are inconclusive (and my doctor only ordered one and no serum cortisol tests), I am going to fly out to L.A. and see Dr. Friedman for a full work up.
And, I’ll keep you posted.
Thank you for posting your stories, which have encouraged me to advocate for myself in a manner and direction, which this time, may be fruitful.
Be well, my new friends,
Kate
p.s. I will post some pictures this week after I scan some of the “after” one….I try to avoid the camera at all costs. I’m sure you understand just what I’m talking about, and for that, I am truly grateful.
The popular website “How Stuff Work”s is doing a survey of all kinds of diseases and Cushing’s is one of them!
Share your information and help get the word out to the world in general.
(I’m MaryO on there and I shared about my pituitary surgery and its aftermath. I hope this info helps someone else like these boards and related websites have)
The idea is simple. Everyone shares their experiences with different treatments. StuffThatWorks automatically transforms these experiences into data about which treatments work best, and for whom
She was only 45 at the time of her death October 12, 2009. I’ve known far too many Cushies who have died far too young from this disease.
Bonnie’s Avatar
Bonny wrote July 1, 2009
I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.
Now two and a half years on, I have a second tumour… on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don’t know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!
All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.
As a single parent, (divorced), life is very hard with Cushings as you don’t have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.
Before and after Cushing’s pictures.
Rest in peace, Bonny!
Beth said it best on Facebook
(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥
The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002
From the posts on the message boards:
My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.
What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….
Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.
Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.
We’ll miss you so much, Sweetie.
I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.
Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.
She will be sorely missed by all who knew and knew of her.
She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.
My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!
Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.
It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.
I think this fits Cookie perfectly:
Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same
— Anonymous
~~~
Cookie shared this poem to show how she felt…
It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”
The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away
Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause
I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy
Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight
But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream
Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead
He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair
The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best
Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead
We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more
As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal
A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two
The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head
But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there
And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery
We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again
I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way
You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had
I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying
I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging
I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when
So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong
Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.
When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.
Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.
First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.
In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.
In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.
I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.
Then the recent surgery to install a dialysis shunt, infections, complications…
How much can one woman take? No wonder she was tired of it all 🙁
No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].
I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.
I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.
Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.
The One and Only Cookie, photo taken by Erin
Columbus CUSH meeting, Saturday, October 26, 2002
From the posts on the message boards:
My heartfelt prayers and sympathy goes out to Cookie’s family, I never really had gotten to know Cookie Like many of you, but during a few chats, I saw how she helped many, answering questions, ect… and always willing to help out. My heart is sad to hear of her passing.
What I learned from Cookie was that she loved people and wanted to make a difference in the lives of those who suffer from Cushing’s. She touched many hearts, I know she touched mine….
Cookie was an inspiration to many of us. She gave her all for Cushing’s awareness, and I will always remember that the last time I saw her, she was singing…
Shalom, my friend.
Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.
We’ll miss you so much, Sweetie.
I was lucky to have gotten to meet Cookie. She is such a fun person and she could always cheer you up.
Cookie, gees, what can you say. She was dynamic, committed, determined, exasperating, poetic, driven, electric, comedic, funny, supportive, strong, loving, loved, and not to repeat, but a driving force in creating CUSH and helping those who needed it. She was wonderful with fundraising. She was involved in so many activies that were for the benefit of others. She has dealt with many challenges in her life and continued to passed the point that many could not.
She will be sorely missed by all who knew and knew of her.
She was just an incredible, delightful person. I really think this world is a little dimmer today without her light from within. I know a lot of us are missing her already. I remember talking to her about the upcoming conference and her enthuisiasm was contagious. I’m just so very, very sorry to hear she’s passed. I hope her next life is one without pain, where she can sing and write poems to her heart’s content. Cooke will be sorely missed.
My family and I met Cookie at the UVA Cushings Conference Fall 2002. She was so helpful and caring. She told my father, sister, and I her “Cushings Story.” She was so, well, there is no better word to describe her, “bubbly.” She was so happy to be there, teaching, learning, and helping with CUSH. She left an impression on my family and I. She had such a great personality. She was one of the very first “Cushies” I met…and she made me re-think my attitude about being sick. She was going through so much, yet she had such a wonderful attitude towards it all. She was amazing!
Cookie touched a lot of lives. I remember back on the “old board”–before any of us had met any of the others in real life–I would get these perky, cheerful and witty emails from Cookie. She had a signature that was some kind of rhyme including “Lookie, lookie,…Cookie.” Her little dollop of cheer in my “inbox” always made me smile.
It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come.
I think this fits Cookie perfectly:
Some People …
Some people come into our lives and quickly go
Some people move our souls to dance
They awaken us to new understanding
With the passing whisper of their wisdom
Some people make the sky more beautiful
To gaze upon
They stay in our lives for a while
Leave footprints in our hearts …
And we are never the same
— Anonymous
~~~
Cookie shared this poem to show how she felt…
It was an awful state that I was in
Hair was growing on my chin
My moods were swinging from low to high
All I did was cry “let me die!”
The hair kept growing down my neck, chest and bod
Would some dr not think this was a little odd
Sometimes I was up day after day
Then I’d want to sleep all the time to chase my troubles away
Rather I’d eat nothing, something, or very little at all
It seemed getting fatter and fatter was my call
I had every symptom of menopause
Too young they said, it’s in your head, there is no cause
I sing so when I said “I have another octave that is below”
They said pack your bags, to the loony bin you go
My periods were off the dr’s. were lazy
After running tests they said I was crazy
Nine years passed, symptoms got worse and I got fatter
My arms and legs were thin, please help me, what’s the matter
I was beginning to think maybe they are right
Maybe I am just a wee bit up tight
But my husband would say find another dr. it has to be
You are not the girl who married me.
Our children were afraid to them I was so mean
I’d see myself doing and yelling and to myself I would scream
“What is wrong with you! stop it” as if I was in a bad dream
Then I went to a dermatologist for a rash I had
He took a look and and asked “What else to you is bad”
I poured out my heart, I cried and I said
I can’t take any more, I wish I was dead
He asked who I had seen and I gave him the list
And I could see on his face, he really was pissed
He got me to the Cleveland Clinic and the best dr. there
Who listened to me, and checked out the arms, legs and hair
The mood swings, personality changes, the ups and the downs
Voice lower and periods, and face and body so round
One thing he did was run the same tests
Over and over as the results were not the best
Nothing was the same result and so he knew
Surgery was what they had to do
Something is very wrong in my body he said
Let us take a look now or you will be dead
We think you have Cushing’s Syndrome or Nelson’s Syndrome, too
But we will do our best to help you
Let us open you up and we will explore
Then we will know rather we do less or more
As it turned out the x-rays did not know
What they would see and how much would have to go
My female organs had tumors, fibroids and all
They called this syndrome Stein-Leventhal
A complete hysterectomy is what was done
How I had children not one of them knew, not one
Upon seeing that problem to the adrenals they flew
And things were so bad they removed two
The adrenals, 13 times their normal size and had twisted so
On the x-ray they looked fine, but they both had to go
After that they knew and to me they said
There is a pituitary tumor in your head
But until it grows there is nothing we will do
And 15 years later is when it grew
By then CAT scans and MRI’s were everywhere
So even I could see the tumor there
And no more cutting open the persons head
Up the nose they went instead
Well here we go again, lucky me
The tumor was wrapped around an artery
We can’t take it all out but we will do our best and try
If we sever the artery, you will die
5 years later I was back and then
They took the tumor out again
I opted for radiation to kill my friend in my head
I got tired of the Cleveland Clinic saving me a bed
I had other surgeries and emotional problems but day by day
I was going back to the female way
You see I was very slowly turning into a male but how
Will I be come a women now
The next 8 years were very bad
Almost worse than the first 9 years had
I lost some weight, most of the hair went away
With Nelson’s Syndrome some of the Cushing would stay
I woke up one day and the sun was shining
I was no longer bitching, no longer crying
I was almost me except for the pounds
And the thin arms and legs and the body so round
I was accepting me my life was changing
All I needed was a little more rearranging
I was out in public, I was acting and singing again
Working, volunteering, how did this happen, when!
I still get little bouts of depression but then
I know why, I’m not scared, I feel them coming and when
So hang in there and I promise you
You’ll be doing the things you used to do
Maybe a little slower, maybe not as long
Things will brighten up, I know I am not wrong
Keep on looking the right doctor is there
I know what you are going through, I really do care
I am here for anyone to help with what I can do
We all are rooting and praying for you.
1955 and 1962 [Photographer: Cookie’s family]
1980-81, 3 years old, 2000 [Photographer: Cookie’s family]
When Sue left a message on my answering machine this afternoon (October 11, 2003), I knew that something was terribly wrong. It never occurred to me that it could Cookie, our Cookie. Always so positive, cheery, full of life. Even though she was as sick as she was, again, I really thought that she’d pull through, one more time. How could she not? She’d survived pituitary surgeries way back, adrenal surgery, Nelson’s, Cushing’s, more than any one person should have to endure.
Throughout her too-short life, she’s been far too sick, yet she’s carried it all off with grace and enthusiasm.
First diagnosed with PCOS, Cookie had an hysterectomy years ago. During the hysterectomy, they realized that her adrenal glands were greatly enlarged. Cookie had Cushing’s disease and in 1974, Cookie had her adrenal glands removed, in 1989 she had her first pituitary surgery and in 1994 her pituitary was removed completely. Then radiation. Since these are the major glands that run the body, she has been on major hormone replacement for a long, long time, pills and daily injections. Because she had both adrenals and pituitary gland removed, she was also saddled with Nelson’s syndrome…and more medications. Because of her Cushing’s experiences, she helped to found the international CUSH organization to promote awareness of Cushing’s disease/syndrome and served as it’s treasurer and fundraiser.
In November, 2002 she had surgery for E.Coli in her sinuses, of all places (she told the doctor that she wasn’t snorting hamburg!) and in December she had a pacemaker put in.
In Feb, 2003 Cookie suffered a Code Blue. Her heart stopped and she stopped breathing. There were 15 people working on her to bring her back. She couldn’t feel her feet, then her hands were cold, then every little thing imaginable was happening with her. Then cardiac care, a heart attack. Cookie went on permanent dialysis. Her hands suffered permanent damage, Raynaud’s Disease. Her fingers turned purple and she had to wear white gloves all the time. She was bleeding internally again and her platelets were down.
I talked to Cookie after this last assault on her body and she was as cheery as ever. She wasn’t really ready to go home, but she walked 60 feet at the nursing home in several tries and if she could walk a total of 60 feet then her insurance would pay any longer. Her dialysis times were terrible. Tu, Th and Sa 8-11 PM. But her main complaint was that she couldn’t go out of state to be at the birth of a new grandchild.
Then the recent surgery to install a dialysis shunt, infections, complications…
How much can one woman take? No wonder she was tired of it all 🙁
No matter how sick she was, she was always ready with a joke, a little song. On the recorder where people leave messages for the toll-free number, Cookie left a message May 17, 2002. I’ve always left it in the answering machine, so I could get a lift by hearing Cookie sing one of her inimitable parodies. If you’d like to listen, you can hear Cookie singing and laughing, one more time [file is missing – I’ll try to find it again].
I just cannot believe this. I truly thought of Cookie as a wonder woman who could do it all, and she could pull through this, too.
I guess she got tired of dealing with illness after illness, medications, surgeries, injections, dialysis, everything. I know I get tired just thinking about dealing with any one of these. Cookie put up a very valiant front through everything. She did more to get the word out than almost anyone I know.
Rest in peace, Dear Cookie. I know that right now you’re organizing angels into working teams who will get heaven straightened out, with fun and laughter all the way. I guess G-d needs you now more than we do.
Hi and good evening new here So im EvE7070 and oh my were do i start.
I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.
But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong
i even got a allergies to peanuts which I had never had a problem with before crazy right
So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland
So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest
I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again
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