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.
Hi! My name is Cathy Tia. I’m 27 yrs old and was diagnosed with Cushing’s disease 6 yrs ago while doing my first year of an education degree. I had worked in the fitness industry at that stage for 5 years and was fit and healthy but as soon as I started to fall asleep at the wheel driving into varity. I thought something was wrong symptoms persisted and weight gain fatigue, sweats, acne no periods. The list goes on, started to get out of control.
I went to a endo and she did some tests on my bloods and was shocked that my cortisol levels were in the thousands then we did some 24hr urine tests and they were as high as 3000. After nothing showed up on the MRI scan we did the petrosal sampling and it showed the source from coming from my pituitary gland so I then went to hospital for them to have a look at my pituitary gland they saw no visible tumour and that was that I then was put on a course of drugs as I kept going into adrenal failure where my cortisol levels were as low as minus 10 so no wonder I was in agony and feeling like I was going mentally insane. My weight dropped to 48kgs at the time of low cortisol, then my body changed again weighing in at 70’ish kgs.
I started to get heart palpitations and was exercising so much I nearly dropped dead but nothing I did seemed to help the weigh loss. My cortisol was tested again and again it was high, I went on a block regime to mimic what it would be like to have no adrenals before the trauma of the surgery well as I expected they didn’t bring down the cortisol in fact it increased. I went off all drugs as they made me feel so sick and I couldn’t even hold a job because of no energy etc.
Now 2 yrs later it is back with a vengeance and again there was talk of removing my adrenal glands but I refuse as the pills didn’t work so why would the surgery again? I said I would try the drugs. I have been on them 4 months and my levels which are meant to decrease have gone from 284 this week to 1225. My endo is at her wits end I’m going back to the hospital on Wed but I feel there is no light at the end of the tunnel as I feel we have exhausted all my options.
I’m newly married only 9 months ago I have the most supportive wonderful husband but feel bad for him as we can’t conceive and do normal things young married couple do as I’m always tired and hate going anywhere because of my appearance. If anyone has any answers out there or just words of support I would love to hear from you.
cheers, Cathy ‘mad’ Tia ( at least I feel mad)!!!!!!!!!!
Update Monday June 30, 2003:
Hi. Well, I have had more tests and yes they confirm that my Cushing’s disease is pituitary based, I had an MRI scan last night so we will wait and see if there is any visible change from the one I had done 4 years ago, then from there surgery.
I am gaining more weight and my skin is full of acne even though I’m on an antibiotic and the pill to help it, My periods have stopped even though I’m on the pill and the hair on my face and body is really embarrassing. I have totally lost confidence in myself and any situation I feel is stressful even paying the bills is an effort.
My diet is still very strict only protein and I try and walk and do weights everyday but I feel I’m losing the battle. I hate the waiting for results I just want them to hurry up so I know what my options are start them and get on with life!!!!!!
Frustrated Cathy ‘mad’ Tia (at least I feel mad).
Update Wednesday July 9, 2003:
As you all know I went for an MRI scan last Monday and the Monday just gone I recieved the news I had a 7mm tumour on the left side of my pituitary gland which means removal of that left side, I’m relieved after 6 years of cyclical Cushing’s there is something to show for it at the same time I’m terrified not only about the surgery but all the after effects the drugs the quality of life after this terrible disease!!!!!,
My husband and I are have amazing faith and support from family and friends but it is still such a roller coaster ride we are only 27 years old and have been married for 10 months we don’t know if we will ever have children which is so important for us. We don’t know where life will take us but we do and have accepted this is for a reason god works in mysterious ways so please keep us in your thoughts and prayers as we do for all you fellow Cushing’s patients out there what ever the stage of disease you are at, never ever give up be strong.
cheers, Cathy Tia from little old New Zealand.
Update August 3, 2003:
Hi everyone well it is now the 3rd of August 2003 and I am going to the hospital on Tuesday here in little old New Zealand, to have a meeting with the brain surgeon to go through the procedure. They have found a pit tumor on the left side of my gland and need to remove the whole side. Wow, pretty scary but at least I’ll feel better after 6 yrs of not such great health.
I’m excited about my future and hopefully my husband and I can start our lifes together with children in the future, I’ll write on Tuesday night to tell of my surgery date, if I get one.
Keep the faith, everyone. There is always hope we are the strong ones what doesn’t kill us makes us stronger! Feel free to email me on cathyscurves@hotmail.com.
Update August 22, 2003:
Hi everyone well I haven’t written in a while as you know the hospital systems are slow at getting things moving. As you know a tumour was found on the last MRI but now they think there is more to it so Monday 24th August, tomorrow, I’m going for another CT scan then surgery although I don’t have a date for surgery. I’m hoping it will be in the next month because I want to be out of hospital to share my 1st year wedding anniversary with my wonderful husband my angel here on earth at home not in hospital. I’ll keep you all updated this week for the next chapter.
Hang in there everyone. Remember, if we all stick together and send love through our thoughts we will beat this thing!!! please email me anyone if you want to talk I know I’m down here in little old New Zealand but don’t hesitate.
Update September 15, 2003:
Hi everyone it’s Cathy here agin from little old New Zeland, I finally have a surgery date it is on the 15th of October one month away it’s been a long wait but now I know the date I can plan my life!!!! I should be fighting fit for xmas day that was my goal so My husband and I can plan a holiday a family and get back into full time work. I’m so excited.
Hang in there everyone and please send your prayers and happy vibes my way on the 15th
cheers Cathy ‘mad’ Tia
Update October 10, 2003:
Hi everyone. Well, only 4 more sleeps to go until my 2nd pit surgery. Let’s hope they get the bugger this time. I’ll update you all as soon as I can focus on the computer screen
cheers Cathy
Update October 27, 2003:
Hi everyone! Well, it’s 2 weeks tomorrow post op. I’ve been home 1 week and recovering well, things went to plan as you all know the discomfort only last 3-4 days and my cortisol is dropping which is so positive. We will know for sure in a month. I’m hoping it comes down and stays down so we know I’ve been cured. I’ve already lost 2kg’s and the high colour in my face has gone down my joints are not as sore and my acne is clearing up. I can’t believe in 2 weeks. I’m already looking better. I ask you all to keep praying and sending happy healthy thoughts and vibes my way as you all know this is just the beginning as it is such a reecurrent disease. I really want to avoid having my adrenals out which they will do asap if my cortisol doesn’t stay down. They say this is the only way for sure to cure Cushing’s disease.
But I send hugs and kisses to you all and anyone whos going to have pitaitary surgery either for the 1st time or 2nd don’t worry just relax and go with it rest and recover as much as possible then get your life back please feel free to write to me my email is in this bio.
cheers Cathy ‘Mad’ Tia
Update November 26, 2003:
Hi all, well it is 6 weeks today since my second pituitary surgery, I developed diabetes insipidous but that has gone now hooray no more peeing every 2 minutes, ha, ha.
Well the last 2 blood cortisols were high again so I’m really bummed out the first 3 weeks after surgery it seemed to be on the way down and I lost 5 kg’s I was elated, but now the symptoms have returned the tiredness puffiness etc and I’m not even on any replacements I haven’t had a period so it looks like the adrenals will have to be removed bummer!, I have just completed a 24hr urine collection so the results should be in early next week everything hinges on this result if it is high they are taking me straight back in for the double adrenalectomy if anyone has any suggestions or has had the same experience please email me I feel depressed again just as I thought I had my life back on track.
kind regards Cathy ‘Mad’ Tia
Update December 4, 2003:
Hi everyone me again, well unfortunatley my cortisol is high again after 6 weeks post op so I am booked in to see another surgeon next Wednesday to talk through the procedure of a bilateraladrenelectomy (what a mouthfull), could anyone who has had this done please email me as I’m terrified and want to know what to expect in regards to recovery time, sickness, etc
keep your chins up
talk to you when I have more gossip
Cathy ‘Mad’ Tia
Update January 29, 2004:
Hi all well happy new year to you all. I have a CT scan date on Feb 16th of my adrenal glands then surgery will follow hopefully soon after that I’m scared and would love to hear from others who have had their adrenals out because I’ve heard some horror stories, please email me.
I have had an interview with a local magazine that goes out to the nation telling my story and journey with Cushings disease it was fun my husband and I have had photos etc I will post it when it comes out next week I just want others to be more knowledglable and perhaps people may come forward and talk to me if they suspect they may have it.
I would love to set up a support group in New Zealand because there is no one I can talk to here.
Well I’ll talk to you all soon and please email me if you have any words of encourgement.
God bless Cathy ‘Mad’ Tia
Update February 3, 2004:
Hi all! Well, I have more exciting news from the magazine article that has only been out two days. I have been asked to go on a morning talk show televised across New Zealand to talk about the disease and my story and have already recieved emails from others in NZ that have been cured. It is so positive it makes me want to get on and move forward to help others when I’m finally cured hooray! I’ll update soon when I’ve been on TV.
God is good god bless you all Cathy ‘Mad’ Tia
Update March 30, 2004:
Hi guys. Well I finally have a date for my adrenal surgery. 2 failed pit surgeries so here is their last ditch attempt to cure me hooray!
It is scheduled for the 15th of April 2 weeks time so I’ll get back to you as soon as I’m up to it, please pray for me as this is the final time hopefully then I’ll be rid of this nasty disease. I would love you guys to email me whoever has had the adrenals removed to tell me the good and bad things during recovery so I’m prepared.
cheers everyone and hang in there.
hugs cathy ‘mad’ tia
Update April 29, 2004:
Hi everyone. I’m back it’s 2 weeks today since my surgery the removal of both adrenal glands. I feel I’ve been to hell and back over the last 7 years but I’ve come out on top I’m sore and bruised but feeling the best mentally and emotionally the best in almost a decade. I’m on a normal dose of hydrocortisone which understand the average person produces and have already seen marked changes in my appearance like redness had gone, night sweats aches nausea are all gone in only 2 weeks so I’m looking forward to getting my body back.
Thank you all for your support and I will keep you updated as to my situation. You all must hang in there and fight fight fight! Your day will come in those dark days of despair never give up tommorow is always better and you don’t want to let this disease win you can do it.
Update July 3, 2004:
Hi everyone well it’s been ages since I wrote I have had both adrenals out and finally I feel normal most of the Cushing’s symptoms have gone and the old Cathy is slowly emerging it is nearly 3 months since surgery and I have lost 9kgs and am looking not so tired and puffy hooray when people ask how I’ve lost the weight I say I’m on a cortisol diet which they laugh and don’t understand but I know you all do.
Well if any of you are scared to have this surgery don’t be they do it all keyhole so it’s neat and tide and it has changed my life I feel like a near normal 28 yr old who can restart her life my husband and I are so happy we have been given a 2 year gap to try for a family before radiation to the pit gland to avoid Nelson’s Syndrome so it’s not over yet but I believe it will be all worth it soon.
Well take care all hold your heads up high and be strong.
Update September 26, 2004:
Hi it’s Cathy Tia here again, well my husband and i have just celebrated our 2nd wedding anniversary cushing free hooray!! IT IS A BLESSING TO HAVE MY HEALTH BACK. It has been five months since my adrenal surgery and have had one adrenal crisis due to an underlying viris which was a bit scary i was in hospital for 5 days being pumped full of hydrocortisone ironic really after 8 yrs of having too much oh well, i’m back and working full 3 different jobs and loving life. All of you out theree still waiting to be cured please hang in there it is so worth it you will never take life for granted again.
God bless to you all and please never give up.
Update January 31, 2005:
hi all well a little update to my story. It has now been 9 months since i have my adrenal glands removed i have lost 27kg’s and people are starting to recognise me again all of the symptoms are gone i now have addisions disease as my adrenals can shut down the meds i take are cortisone and hydrocortisone to help with balancing my hormones out. I have had one adrenal crisis but recovered well. Peter my husband and i are on the fertility track now i am on fertility drugs to hopefully bring us a little bundle of joy this yr i also have PSCO so having a baby is a challenge but i know God will bless us when the time is right. I am working again like a normal person and can get through the day without a sleep.
Life is great. To all of you in the beginning, midst or end recovery phase of this terrible disease please always have hope and determination, remember you are what you believe so keep positive.
God Bless Cathy ‘mad’ Tia
Update January 31, 2006:
Hi all well it’s beena yr since I wrote. Alot has happened for my husband and I. Last time I wrote we were embarking on a huge rollercoaster ride with IVF fertility treatment and guess what we have had two cycles and the second one worked like a dream. We were given 15% chance of ever getting pregnant with the trteatment so we are proof that doctors only know so much with much gusto determination prayer and support from family and friends we did it we are now 3 and a half months pregnant due August 10th 2006. We feel so blessed and want to let you all know this can happen for you keep the faith and search inside yoiurself about what your life is worth this disease is only a label not who you are, seek and you will find the answers even if it has taken yrs it’s taken me 10yrs of being sick surgeries lost hope and regained faith. God has a plan for all of us and now I’m going to be a mum i can hardly believe the blessings.
I have had 2 trips to the emergency ward with adrenal crisis being pregnant does put stress on the body so now i have altered my drtugs i feel great i have only had 2 weeks of morning sickness and noew i have full energy back and only get tired like anyone at the end of a day. I ahd emergency surgery last week for an abcess caused by mastitis even though i haven’ breast feed they tink because my immunity is lowered by having no adreanl glands it wa so serious.
In my mind I know i always have to be careful but my advice to eveyone is live each day like it is your last be knind and never stop loveing or giving because it will come back in ten folds as it has for me.
God Bless and kind regards to all my fellow cushies, families and supporters.
Hugs cathy tia
Update October 25, 2006:
Hi cathy Tia here from New Zealand last time i was trying to concieve through IVF and we did it we have had a beautiful baby girl Grace Ruby weighing 6 pounds 13 ozes 3 weeks early all is grand with all of us healthy and loving being a family. Keep the faith and hope if you believe with your heart your dreams will come true.
cathy tia
Update February 22, 2007:
hi 22/2/07 cathy here agin
i now have another new 5mm tumour on the right side of pit gland due to having nelsons sydrome after nearly 3 yrs ago having boyth adrenals removed
any suggestions on what to do? they want to give me radation. has anyone had this?
cheers cathy
Update May 3, 2007:
hi all well my daughter is now 9 months old , I mde the decision to havea breast re3euction last week and am so thrilled with the results the 12 yrs of cuhsings and three yrs of addsions (removal of glands due to recureent cushings) ravished my body i feel young again and sexy hooray for my husband!!!
I had a very scary time this week though due to the stress of the surgery on my body my addisions played up big time and i ended up in Er twice having cortisol shots and saline to give me balance, i’m still very tannedyellow and can’t seem to get on top of the balance but feel better than last week.
Has anyody experience addisions after cuahings?, i’d love to hear from you and ask how you mmagae your balances of medications and water balance.
until next time,
Hugs feloow cushies/addisions
Cathy Tia
Update September 17, 2009:
hi all well its been a while my daughter is now 3 and i have a beautiful miracle son called Elijah who is now 6 months old , i ahve had a great run since having my adrenals removed and had the breast reduction i’,m even breast feeding a real miracle and testament that if you have hope you can achieve anything. i ahve had many talks to churches and articles written to educate people in New Zealand and hope to give them hope whatever their circumstances.
unfortunatly i may ahve developed nelsons syndrome so am having an MRI in 2 weeks to see what the pituatary tumour is doing if it has grown i’ll have radiation to shrink it.
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.
Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
The information I have is very sketchy. I’ll update when/if I can find an obituary.
Kassey passed away on June 30th. Her sister said she died in her sleep.
She was in the hospital due to an adrenal crisis on June 21, 2016.
I don’t know the exact cause or if she was still in the hospital.
She had surgery April 28, 2016 for blood clots.
Kassey was only 20!
From a GoFundMe page her sister put up.
Kassey Whiterock passed away June 30th in her sleep. If you knew her, you knew allow badly she was sick and in and out of the hosipital. My mother and I are the ones arranging her funeral cost and on top of the sadness of loosing her we are not worrying about how were going to do this. The plans are for her to be cremated and taken to Arizona where we have family and reservation. If you could please find it in your heart to to donate it would be greatly appreciated and one thing my mother and I do not have to stress about in this time of grieving .
Another Golden Oldie, Kirsty’s bio was last updated 08/18/2009.
~~~
I don’t really remember when it first started. It was probably about a year ago when I think about it.
I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.
As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.
The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.
Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.
My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.
As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.
I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.
The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.
The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.
The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)
This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.
Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.
After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.
The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.
Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.
The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).
After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).
I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.
However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.
My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).
There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.
My name is Pat Gurnick. I had a Pituitary Tumor (Cushing’s Disease) removed (Macro 1.4 size) by Dr. Kelly at UCLA.
This has been a long journey for me. In 1990 I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Fibromyalgia, and Environmental Illness/Multiple Chemical Sensitivities. I was a Needs Assessment and Referral Counselor at Charter Hospital. I than went to work for Brotman Hospital as a Drug and Alcohol Counselor, with their day treatment program for Chronic Mentally Ill Substance Abusers, but by 1992 I was so ill I went on disability. I could not read or write for over a year, so sick. I started a support group, WEBSITE and phone hotline in 1993, to give myself a reason to live. I had such cognition difficulties and fatigue, to name a few symptoms, that I don’t honestly know how I achieved this!
In 1994 I thought I was in remission, little more functional and decreased Fibromyalgia pain; yet, I also went through premature menopause at that time, age 35 (I am 45 now), which I now found out was the cause and beginning of a Pituitary Tumor/Cushing’s Disease! I was single and I had no children. My doctor figured this is when the tumor developed/high cortisol, to compensate for my crashed adrenals (HPA Dysfunction common to CFIDS Patients).
I tried so hard to lose the weight all those years, and the past few years people were always asking me when I was “due” for my stomach was so distended. In addition, I was anxious and depressed, experienced nausea most of the time, facial hair, moon face, hump/fat pads ,and many of the other Cushing’s effects. The Rheumatologist just attributed this all to getting older and osteoporosis (which I had a severe case by this time due to Cushing’s – little did I know!).
No one picked up on the Tumor situation until last October, 2003. I had other health problems, especially mold injury (from water damage in my home) and had to leave with basically the clothes on my back in August. My life was upside down. I was stressed and went to see a chiropractor to ease my tight neck. I knew something was wrong when the x-rays showed fat pads not bone as my old Rheumatologist had claimed.
By October 2003 a New doctor (been to so many through these years trying so many things to get well) wanted me to have an MRI done when I showed him my x-rays and told him of my concerns. I was not willing to give up and attribute it to old age! He stated he thought I had Cushing’s disease and wanted to test me. The tumor was clearly seen on the scans, and Cushing’s Disease confirmed. I had gained 40 pounds by this time, and looked totally different, as you can imagine.
After I was diagnosed, I went to many healers, tried holistic things, which didn’t heal me, but got me in good shape for surgery a year later. Thank God it was a slow growing tumor, because it was close to my eyes and sinuses, and waiting any longer would have been detrimental to my health. I had surgery performed December 17, 2003, at UCLA with Dr. Kelly. He has been very kind and patient with me while I tried alternative treatment, knowing surgery would be eminent.
As for my hospital experience, 2x’s I had adrenal insufficiency and was terrified. I had no idea what to expect, fainting on the floor, staff all around me when I woke up, going in and out of consciousness, frightened I would go to sleep and never wake up, wanting to throw up all the time, could not walk, dependent on oxygen mask (trouble breathing) and I.V., using a bed pan, and had a longer stay than anticipated. Plus, hurting from stitches on my stomach, and was told was used for fat during surgery; had cerebral brain fluid leakage and titanium mesh was placed in my head. Little did I know that was only the beginning. I did not understand the post-op situation (cortisol withdrawal symptoms, medication side effects, emergency bracelet, light headedness, to name a few).
So, I have been looking for answers and finally found you all! I am not alone! It is ONE DAY AT A TIME now, and I am looking forward to better days ahead.
Update: April 15, 2004
I am a wreck since surgery, going from depression to anxiety, hormones bouncing off the walls. hot flashes, cognition problems, incontinence (cortisol weakens muscles including the bladder), and sometimes crippled to the point I cant even stand to brush my teeth. I am struggling with continual weakness, edema, painful/swollen hands and body. Now, ailments are popping up as the high cortisol decreases in my body. I have a fatty liver and gallbladder disease (cortisol can do this), Rheumatoid Arthritis (Cortisol can do this break down the muscles and joints), heart irregularities, high cholesterol, to name a few. Cortisol can cause so much damage, and I feel like I am left in pieces all over the floor, running from doctor to doctor to patch me up. Having little energy but dragging myself all over town to find some relief; hoping for a solution.
I have only lost 5 pounds but my mustache is gone, which is good news. Plus, my osteoporosis has gotten better and is now osteopenia status; in such a short amount of time. Taking out that tumor saved my life!
Update: December, 2004
It has been a year since my pituitary surgery. I have lost almost 40 pounds. I think more clearly and feel more confident. Look like a real woman again! Sure, I still have my mood swings, cortisol still low (but off cortef now), have phsycial pain (decreased 60% due to Lexapro antidepressant), fatigue (limits me on some days), and need to monitor my stress level or my immune system goes down quick and I get sick. My body is not the same. I am way more sensitive. But, I changed my lifestyle to fit my needs. I moved from Los Angeles to Boulder, Colorado, for the slower pace and beautiful mountains. My adrenals are not strong, and I have to be careful to take it easy or I have symptoms of adrenal burnout. However, I am so glad to be alive, mentally functioning, and taking walks again in nature!
Dr. Kelly at UCLA was fantastic, and I will always be grateful for his excellent expertise in ridding me of the tumor. I have a new chance in life. I do look over my shoulder, ever reminded that it can come back, having tests every 6 months for years to come. But, I have learned from this experience that really life is to be lived one day at a time anyhow. Appreciate each day as it comes, living in the moment, making the best of the time I have.
I look at life and love differently now. I left a stuck relationship, moved to a place that will bring me more peace and joy, empowered myself, being my best friend, having more fun and laughter in my life. I plan on continuing with my goals, which were stopped by the tumor, doing what matters to me instead of being co-dependent. I am important. I deserve the best. I have been given a 2nd chance and I will take it for all it is worth!
Update: September 16, 2007
There isn’t a day that goes by when I don’t think of my experience with Cushing’s Disease. I remind myself that I don’t have the tumor anymore, than I look out at the sunshine lighting up day and take in a breath of fresh air, so grateful to be alive.
Yes, I catch myself from wandering back to the Cushing’s memories: when I felt like a Cherub, blown up and uncomfortable in my own skin, emotional, feeling like my blood was racing in my veins, breaking my toes, pimples like a teenager, and the dark mustache I knew everyone could see! I still look for those returning signs, relieved that they have not come back. I was told by my surgeon, Dr. Kelly, that the tumor would not return. When fear grabs me, during infrequent times of fatigue and a rush of anxiety, I reassure myself that these are only aftereffects not the tumor returning. I have my cortisol levels tested every year to confirm this fact, and my levels are normal. However, I went through ‘Post Traumatic Stress Syndrome’ from all the medical trauma I endured! It took 8 years for the doctors to finally diagnosis this disorder! You can imagine all the ailments they told me I had or that it was all in my head. I was running around to doctors begging for answers but feeling so discouraged, hopeless, and helpless. I tried many medications hoping for a solution, but none came. I did many holistic treatments, to no avail. Little did I know that I suffered from Cushing’s Disease/Pituitary Tumor!
One day I walked into a Rhumatologist’s office, Dr. David Hallegua, seeking help for my Fibromyalgia and Chronic Fatigue Syndrome, and the doctor exclaimed I also had Cushing’s Disease because of the obvious physical signs I exhibited. This is all a memory today. The once obvious ‘fat’ humps on my shoulders and neck are gone. I dropped most of the weight, my face structure is visible again, my hair healthy as is my skin, my moods finally balanced from the ‘bipolar’ roller coaster of emotions I previously tried to control – time healed this (I am not on any antidepressants), and my hormones are balanced without hormone replacement therapy. I know how lucky I am, believe me, I am thankful!
Yes, I have realized this illness has also given me an amazing gift, one of appreciation for every bird in the sky, every flower that bloomed, every whiff of baked bread, everyday I could walk by the Boulder Creek with vigor, and how I gradually was able to retain information to the point that I could multi-task again! Each little thing has been a blessing. I have much gratitude for being alive, remembering the days when I had Cushing’s but didn’t know it and negotiated with God dark agreements…looking back I am glad that I didn’t follow through. What lesson’s has this teacher left me with? I live in the moment now, present, not running to the past or the future, just appreciating today. Ah, I have today to live! I have come back into my body, proud of my curves, my soft skin, my long hair, my searching eyes, feeling the calm peacefulness that rests in my heart, and the relaxation in my body. It feels good to experience positive sensations, wanting to walk again around the block, to go shopping for clothes, taking a swim in the heat of the summer, all dressed up going to a dinner party with friends, taking meditation classes at the Boulder Shambhala Meditation Center. I have a social life again! For so many years I hid in my house, heavy, unhappy, and discouraged. I didn’t know I had an illness, and all I thought was, “who would want me like this?”. Yet, there was a sliver of hope, for I never stopped trying to figure out what was wrong, desperate to find a solution, knowing all along that I was NOT just fat and growing older, at the age of 35! My body was betraying me, that was clear. The lesson, to not give up, to have faith. My warrior came out in me. I became a stronger woman through all of this, and moved through the challenges that were dropped in front of me, bomb by bomb. I came through the surgery with flying colors, hard but I did it! Winning round one! Round two, dropping pound after pound of fat. Round three, learning how to walk and breathe easy again. Round four, winning the grand prize, learning how to relax, and to be happy that I am alive.
I was able to provide counseling services again , and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 pat@caringcounselor.com
There is life after Cushing’s Disease!
Warmly
PAT GURNICK, CLC
Certified Lifestyle Counselor
Psychotherapist www.caringcounselor.com
Glad to be alive!!! September 2007
Pat’s photos:
The only picture I have after Cushing’s,
a number of years ago,
gained 25 more pounds since then. [Photographer: Pat’s family]
Picture of me and my sister at Thanksgiving – right before surgery. [Photographer: Pat’s family]
Picture of me at home, right after surgery, with my kitten sleeping on my stomach. [Photographer: Pat’s family]
Picture of me with my Cat JACK 4 months after surgery.
You can see my face has gotten thinner, but my body is still Cushy. [Photographer: Pat’s family]
April 2006 [Photographer: Pat’s family]
Glad to be alive!!! September 2007 [Photographer: Pat’s family]
Update January 25, 2016
In 2010, I had a near death experience from dehydration and ended up in the ER with Secondary Adrenal Insufficiency. See the video I created at that time:
I notified NADF (National Adrenal Diseases Foundation) that Cushing’s patients suffer and need to be recognized through their organization with this serious life threatening condition: Secondary Adrenal Insufficiency. As a result, the Medical Director,
Dr. Margulies, MD, developed a brochure on Secondary Adrenal Insufficiency:
Stress dosing and recognizing Adrenal Crisis symptoms is most important. Today, I have a better understanding and can recognize the symptoms of dehydration, and I am more prepared to double my hydrocortisone medication under an emergency situation (often for me it is the flu) or stress.
After my surgery in 2003, I was able to provide counseling services again, and opened my Psychotherapy practice in Boulder, Colorado, older and wiser. I specialize in helping those who are challenged by Chronic Illness, by phone, Skype, in person, or in the client’s home if they live in the Boulder area. I can always be reached at 303/413-8091 or pat@caringcounselor.com
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.
Another Golden Oldie, Lee had both pituitary and lung tumors. This bio was originally posted 06/07/2008.
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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.
Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family. She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.
Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.
Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.
Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.
The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.
Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.
Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.
Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.
As with everyone who suffers from this disease, mine is a rather long story.
In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.
Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”
At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.
Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.
Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.
I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.
Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.
I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.
I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.
When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.
I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”
It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.
Thanks for the support and I would welcome input from anyone.
Diana
Update January 28, 2011
It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol
Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.
In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.
To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.
You can and will get through this, your life is not over.
Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time
Before Cushing’s [Photographer: Jeanne’s family]
In the kitchen [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
Jinxie [Photographer: Jeanne’s family]
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