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In Memory: Lori Holt ~ January 6, 2008

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Sunday, January 6, 2008

Lori’s sister-in-law wrote: “I am Kimberly, sister-in-law to Lori from Monmouth IL.

During the first few days of September 2007, Lori had surgery to remove her adrenal gland.
She experienced extreme difficulty post surgery and never recovered.

I wish to inform all who might have known her on this board that she passed away on Sunday, January 6, 2008.

She was hopeful that the surgery would help her,
and loved and appreciated her many friends and others who supported her.

Thank you to everyone here who knew her and offered encouragement and hope.”


Lori’s sister-in-law wrote again : “I apologize for the time that has passed since you wrote the last e-mail. I have sent Lori’s obituary to you in an e-mail from a newspaper. (http://www.thehawkeye.com/Story/obit_Holt_010808)

There is one error in the obituary. She obtained her graduate degree from Northeast Missouri State Univ., not Southwest as stated.

Lori was truly remarkable, and especially so in her fight with Cushing’s Syndrome (adrenal).

Lori lived in a small town in west-central Illinois, not far from the Mississippi River. As you know (because I learned it on your website!), most doctors never see a case of Cushing’s. At some point during the summer of 2007, Lori diagnosed herself by doing research online. This is evident by some written things she left behind in her home, and in letters she wrote to doctors as she went about putting together a medical team.

She worked to find doctors who would perform the specific diagnostic tests to find the Cushing’s. She clearly knew by that point what she was looking for. Remarkably, she found several doctors who worked with her on this. Sadly, it was too late. In the last few years, she’d begun to gain weight, which perplexed her a great deal. She would occasionally call me or write e-mails, and in addition to telling about things going on with her life and work, she would mention her frustration at not being able to quite sort out just what was causing her health problems.

Lori was a deeply kind and caring person. She was a gentle soul, and loved her preschool children so very much. She never missed sending my two sons a card not only for birthdays but on every single holiday you can imagine — Halloween, Thanksgiving, Valentine’s Day, St. Patrick’s Day. She was a single woman and worked with great determination to be self-sufficient.

She really loved her brothers, and was so glad as they married so she could have some “sisters” around. Once we moved from the Chicago area to northern Michigan in 1998, we didn’t see her often, and I regret that so much.

Lori fought her disease intelligently and valiantly. She suffered a lot while in the hospital between Labor Day weekend and when she died on Sunday, 1/5/08. At different points, she suffered from MRSA, shingles, and extreme breathing distress. I am quite certain that her body was just too spent by the disease to recover itself.

I thank you and all who might have been in contact with Lori during the very brief time she may have spent on your message board. I wish you all the very best in your continued struggle with disease and your on-going work to educate the public.

–Kim Jones


From http://www.thehawkeye.com/Story/obit_Holt_010808

Lori Holt

Lori A. Holt, 47, of Monmouth, Ill., died at 1:52 p.m. Jan. 6, 2008, at OSF St.Francis Medical Center in Peoria, Ill.

Born Oct. 7, 1960, in Galesburg, Ill., she was the daughter of Patrick M. and Patricia Noonan Holt.

Ms. Holt was a teacher at the Lutheran Preschool and Daycare Center in Monmouth for 11 years. She graduated from Galesburg High School and then graduated from Monmouth College with a bachelor’s degree. She also lettered all four years in volleyball, basketball and softball. She earned two master’s degrees in physical education and health from Western Illinois University and Southwest Missouri State. Ms. Holt played for the State of Illinois softball team at the national level for two years. She was head coach of women’s volleyball, basketball and softball at Spoon River College and was head coach of softball and basketball at Illinois College in Jacksonville, Ill. She was coach and athletic director at Costa Catholic High School in Galesburg for a number of years. Ms. Holt was a fan of the Green Bay Packers, the Boston Celtics and the St. Louis Cardinals. She was a member of Immaculate Conception Church in Monmouth.

Survivors include her parents of Knoxville, Ill.; five brothers, Frank Felz of Fort Worth, Texas, Michael Felz of Evanston, Ill., Paul Felz of Denver, Colo., Patrick Felz of Buffalo Grove, Ill., and Martin Holt of Grant Ranch, Colo.; nieces and nephews.

She was preceded in death by her grandparents.

No visitation is planned. The body has been cremated. Turnbull Funeral Home in Monmouth is in charge of arrangements.

A memorial mass will be at 10 a.m. Thursday at Immaculate Conception Church in Monmouth.

A memorial fund is being established for Lutheran Preschool and Daycare Center in Monmouth.

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Adrenal Surgery: One Patient’s Experiences

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Extracted and adapted from this series: https://cushings.invisionzone.com/topic/51040-on-my-way-to-getting-well/

Post 1) I was officially diagnosed with Cushing’s yesterday. I have a CT scan to check on my adrenal tumor and a meeting with my surgeon tomorrow. Hopefully they will schedule surgery for Monday or Tuesday. I have suffered over a year with this, been in congestive heart failure, and believe this cortisol caused my son to be stillborn in March. It’s been the year from hell. Please pray that all goes well tomorrow and that I will be cured of this once and for all!!

Post 2) Surgery set for the 23rd!!!!! He is planning a right adrenaltectomy. I am so darn excited…

Post 3) I’m almost two weeks out of adrenal surgery. He removed the tumor & my gland. This has been the hardest and most painful two weeks of my life. I am already noticing little changes in my body. My skin is getting texture, my hair is not as brittle, my swelling goes down each day, and my nails are white instead of yellow and are stronger. I am getting hair back on my arms, legs, & feet too. I can’t wait to continue to get well. I am ready to be able to get out and about. I am pretty much housebound now because of the pain of the withdrawal from the cortisol. I stay on my painkillers and rest in my recliner. Hubby bought it for me because I can’t sleep in the bed comfortably. He’s the best. He’s been sleeping on our air mattress in the living room with me for almost 2 weeks now. He is always there to help me get out of the recliner when I need to. He is amazing. Just wanted to update you all. Getting better everyday.

Post 4) I am on 40mg Hydrocortisone daily right now. I will have my first wean close to Christmas. I have an appt. on the 21st with my endo. She is fantastic and saved my life from this stuff. I am so blessed. Today is a rough day. I did have 2 good days in a row which was a huge blessing. Thanks for thinking of me!

Post 5) Well, I just survived month 1 of recovery. It was HORRIBLE. I have never had so much pain in my life. I am still on 40 mg and my endo. wants me to wean 10 mg starting on the 27th. We’ll see how it goes. I have so much pain, shaking, chills, no sleep NOW. I can’t imagine how its going to be on a lower dose. My cortisol level was SO HIGH (2107) before surgery. I knew this withdrawal was going to be terrible. SHe had never seen a level as high as mine before. The lab actually tested my urine twice because they didn’t believe it the first time. I am doing a lot of resting right now. I am very nervous about my mother leaving on New Year’s Day. I don’t know how I am going to handle my 3 year old on my own. I hurt so badly and my vision isn’t the greatest yet. Thanks for thinking of me and writing me back.

Post 6) We have another call into my endo about my suffering. I have done nothing but shake uncontrollably all day so far. I hurt so badly. I am up every hour at night writhing in pain. I refuse to suffer like this anymore. I want some relief. Thank you so much for all of the advice. It means the world to me. Great news is that I am off my BP meds as of today!! Cardiologist’s office said I could quit them. I am thrilled. Now to get this pain under control.

Post 7) Endo said we can do whatever I can tolerate. I am now doing 20/20/10 instead of 20/10/10. I am still in pain, but it’s a little more tolerable. She said if I am just miserable and can’t take the pain, then I can do a bedtime dose. I am going to try melatonin to help me sleep per her suggestion. She wants to see how I do on this new dose and start a slow wean in a few weeks.

Post 8) Things have been getting better by the week. New years day was my best physical and mental day so far. I can actually feel my old self returning! !! Today I have lots of bone/muscle pain. Its better than a few weeks ago by far. Yesterday I was able to enjoy my son and play with him for the first time in a long time. I could even dance a little with him. He was so happy. I am down to 20/17.5/10& am handling it well. The pain is tolerable. My hump is almost gone, my stomach is mushy and shrinking, skin is peeling and improving, hair is growing in normally. I will be six weeks out this Wed.

 

In Memory of Judy Kennedy – December 15, 2019

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Judy died on December 15, 2019, after battling lung cancer, Atrial fibrillation, and total body weakness.  She was a great warrior for her children.

 

 

From 2008: Siblings Deal With Rare Cushing’s Diagnoses

By KALEY LYON

klyon@dailynews.net

COLBY — As a junior in high school, Justin Kennedy began getting sick and missing school on a regular basis.

He was fatigued, unable to sleep at night and gaining weight rapidly. He also was unable to focus on his school work and began experiencing memory loss.

After several doctor’s appointments, Justin was diagnosed with Cushing’s disease, a rare disorder caused by excessive cortisol levels resulting from a tumor on the pituitary gland.

At the time of Justin’s diagnosis, his younger sister, Jessica, also was showing symptoms of the endocrine disorder. Her diagnosis came at the same time.

“I think they both have had symptoms since they were little,” said their mother, Judy Kennedy.

Other symptoms include a round facial shape, flushed cheeks, excessive hair growth, skin discoloration and depression, Judy Kennedy said.

Weight fluctuation is uncontrollable. Weight is gained at a high rate, despite diet, exercise and other efforts, Jessica Kennedy said.

“The weight has a mind of its own,” she said.

The diagnosis, following many doctor’s appointments and tests, came last November. Today, Justin, 19, keeps busy with a job at McDonald’s, and Jessica, 15, is a freshman in high school taking online classes.

One of the most bothersome symptoms of the disease is the toll it takes on the sleeping schedule. Her children often are unable to sleep until early morning, Judy Kennedy said.

“When there was a chance for her to do online high school, it was such a relief,” she said. “We don’t have to worry about what time she starts her school work.”

Appetite fluctuation is another side effect. The two go through phases where they have healthy appetites, then hardly eat at all, she said.

That’s because the disease puts their bodies through various cycles, which can last for less than a day or for months at a time, Judy Kennedy said.

It’s predicted that about 15 people in a million are diagnosed with the disorder, which can make it difficult to find support and get answers, she said.

The family, however, discovered an online support group and has enjoyed the opportunity to communicate with other families in similar situations.

“I honestly do not know where our family would be if I wouldn’t have found that support group,” Judy Kennedy said. “Even though it’s still awful, it’s better to know that other people have the same symptoms.

“There are people on the streets who have this and have no idea,” she said. “And their doctors don’t either.”

Both teenagers also are preparing for surgery. In mid-May, the family will travel to Houston, where the siblings will have the tumors removed from their pituitary glands. This is expected to resolve the hormonal imbalances, Judy Kennedy said.

“I’m looking forward to that day,” she said.

This Topic on the Message Boards


JESS AND JUDY ARE MEMBERS OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jess and Judy answered questions in an online Voice Chat January 17, 2008. Archives are available.

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Actress Charly Clive, Pituitary Adenoma

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Best friends Charly Clive and Ellen Robertson thought carefully about what to call the tumour that was growing in Charly’s brain.

The doctors had their own name for the golf-ball-sized growth sitting right behind Charly’s left eye — a pituitary adenoma — but the friends decided they needed something less scary. They flirted with calling it Terry Wogan (‘as in Pitui-Terry Wogan,’ says Ellen), but that didn’t seem quite right.

So Britney Spears fan Charly, then 23, suggested Britney. Bingo! Not only was she ‘iconic and fabulous’, but Britney was also one of life’s survivors. From then on, they were a threesome — Charly, Ellen and Britney the brain tumour — although Ellen is at pains to point out that this Britney was never a friend.

What a thing to have to deal with, so young. The pair, who met at school in rural Oxfordshire, are now actresses. Charly’s biggest role to date has been in the critically acclaimed 2019 Channel 4 series Pure, while Ellen starred in the Agatha Christie mini-series The Pale Horse.

But this week they appeared together in Britney, a BBC comedy based on the story of Charly’s brain tumour. The TV pilot (and yes, they are hoping for a full series) is an expansion of a sell-out stage show they performed at the Edinburgh Fringe in 2016.

The production is admittedly surreal. Viewers are led inside Charly’s brain and the show includes a scene where Charly dons an inflatable sumo-wrestler suit on the day of her diagnosis. Poetic licence? No, it really happened.

‘My dad’s mate had given him a sumo suit as a silly Christmas present and so, on Doomsday, we took photos of me in it.’

The tone was set for how these friends would deal with the biggest challenge of their lives: they would laugh through it, somehow.

As the women, now 28, point out, what was the alternative?

Charly says: ‘It was that thing of laughing at the monster so you are not scared of it. If you cry when do you stop? It was easier to make light of it.’

Their show is not really about a brain tumour. It’s a celebration of friendship. Ellen pretty much moved in with Charly’s family during this time (‘To be in place when I exploded, so she could pick up the debris,’ says Charly).

The pair live together today, finishing each other’s sentences as we speak on Zoom — and at one point both miming Charly’s brain surgery (with gruesome sound effects).

This sort of silliness rooted their friendship, which started at the age of 14 when they wrote their own plays (Finding Emo, anyone?) while at school together in Abingdon. Charly later moved to New York to study dramatic arts, and Ellen studied at Cambridge.

In 2015, Charly came home for a visit, and went to see her GP (played in the drama by Omid Djalili) about her lack of periods and a blind spot in her peripheral vision. An MRI scan showed a mass on her brain. ‘They said it had eroded the bone in my nose and was pressing on the optic nerve, and it was lucky we had caught it,’ she says. ‘The next step would have been discovering it because I’d gone blind.’

Even worse, the tumour was so close to her carotid artery that removal might kill her — and they still had no idea if it was cancerous. Into the breach stepped Ellen. ‘I saw it as my job to make her laugh, which is what I’d always done anyway,’ she says. They both talk of toppling into limbo, ‘almost like a fantasy world’, says Charly. ‘As I was going through the tests, we’d do impressions of the doctors and create our own scenarios.’

The friends talk about sitting up into the night, watching TV. There is a touching moment when Charly admits she was afraid to sleep, and Ellen knew it. ‘It’s hard when you are thinking “What if the tumour grows another inch in the night and I don’t wake up?” ’

Charly was operated on in March 2016, and Ellen remembers the anaesthetist confiding that Charly’s heart had stopped on the operating table.

‘He wasn’t the most tactful person we’ve ever met. He said “Oh my God, guys, she died”.’ Charly makes a jazz hands gesture. ‘And guess who is alive again?’ Even at that darkest moment, there were flashes of humour. Ellen laughs at the memory of the surgeon in his scrubs, with wellies on. ‘They had blood on them. I was transfixed. I wanted to ask “Is that Charly’s . . . brain blood?” ’

In the stage version of the show, the anaesthetist gets two full scenes. ‘He’s the heartthrob of the piece,’ says Charly. ‘A sexy rugger bloke who is crap at talking to people.’

The days that followed the surgery were hideous — and yet they, too, have been mined for comedy. Charly’s face was bandaged, ‘as if I’d had a Beverly Hills facelift’, and she was warned that she could not sneeze. ‘If I did, bits of my brain would come out my nose,’ she says.

Ellen read her extracts from Harry Potter but ‘made them smutty’, which confused the already confused Charly further. ‘I was drug-addled and not myself, and in the most bizarre pain, concentrated in my face’.

‘That week after the surgery was the worst part of all,’ says Ellen, suddenly serious. ‘She was behaving oddly and there was this unacknowledged fear: was this Charly for ever?’ Oh, the relief when the old Charly eventually re-emerged — albeit a more fragile, often tearful version.

It was Ellen who persuaded Charly to take their stage show about her illness public — and it went on to win much critical acclaim. ‘I wanted Charly to see it as something other than just this rubbish chapter that needed to be forgotten about,’ says Ellen.

For her part, Charly credits her best friend as her saviour: ‘I don’t know how I would have got through it all without Ellen.’

The good news is that Britney was not cancerous, although surgery did not obliterate her entirely. ‘She’s still there, but tiny — just a sludge. I’ve been told that she won’t grow though. If I ever do get another brain tumour, it won’t be Britney.’

Off they go again, imagining what is happening now inside Charly’s brain. ‘Britney is still in there, trying on outfits for a comeback tour, but it won’t happen,’ says Charly. Ellen nods. ‘It’s over,’ she says. ‘But she’s just left a pair of shoes behind.’

Britney is available to watch on BBC Three and BBC iPlayer

Adapted from https://www.dailymail.co.uk/femail/article-10264203/I-laughed-brain-tumour-Id-never-stop-crying-Actress-Charly-Clive.html

In Memory of Stacy Ollenberger ~ November 4, 2015

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stacy-o-memory

 

Stacy’s sister posted on Facebook:
This is my beautiful sister Stacy she was diagnosed with cushings disease in 2005 at the age of 19 she had two pituitary surgeries radiation and finally an adrenalectomy we watched her suffer struggle and fight this disease for ten years there were countless Dr visits and pills she had to take daily until she passed away in her home on November 4 2015 at the age of 30 we miss her so much she has left a hole in our hearts but we will continue to bring awareness to this horrible disease hoping we can save someone’s life…

…Thank you so much for sharing this I think she struggled with the stigma of the disease she was doing so much better but she passed suddenly of adrenal crisis we were shocked we truly believed that she had this beat I know this group was so special to her she even added me to it I think to help me understand what she was going through you are all incredible amazing people to have the strength to battle through this everyday.

From Stacy’s blog:

Monday, April 27, 2009

Ambers Paper

My friend Amber is currently in school (taking Journalism I believe). She started reading my blog and had to write a paper for one of her classes, she asked me if it would be okay for her to write one about Cushing’s Disease and use my blog and/or me for information. I agreed. Amber found out quickly how hard it is to find useful information about Cushing’s Disease in Humans. Alot of sites are geared towards dogs and horses. She agree with the rest of us that it is retarded that there isn’t more information so that people could at least become more informed about this disease. Anyways this is a copy of what she submitted:

Living with Cushing’s disease
By, Amber Yake

When Stacy Ollenberger was 19 years old she began gaining weight at a rapid pace regardless of her healthy lifestyle, when she went to the doctor she was called a liar and told she was just getting fat.

“I saw six doctors before I was diagnosed,” Ollenberger said. “Doctors told me it was just weight gain and I had to change my diet and exercise.”

After seeing five doctors in two different cities, she finally saw a doctor who realized something was wrong with her. He suspected she had Cushing’s disease and referred her to a specialist in Edmonton.

“Finally I saw another doctor and he knew something was wrong. He didn’t know what so he did a bunch of tests and found out that I had extremely high cortisol levels,” Ollenberger said. “He had seen Cushing’s once before and suspected that is what I had but wasn’t a specialist so he referred me to Edmonton.”

According to Ollenberger, an excessive secretion of ACTH, which is produced by a pituitary tumour, causes Cushing’s disease. The ACTH then triggers your adrenal glands to produce excess amounts of cortisol. Symptoms include upper body obesity, round full face, increased fat around the neck, and thinning of arms and legs among other things.

Ollenberger showed all of these symptoms, however; since Cushing’s disease is so rare, none of the doctors she saw thought that is what she had.

“The specialists in Edmonton did not want to see me because they said Cushing’s disease is rare and they said that there was no way I had it,” she said. “They had all my blood work and stuff, my cortisol was more than 6 times higher than that of a “normal” person, and they told us that the tests were wrong and needed to be redone.”

Ollenberger was finally seen by specialists in Edmonton, AB and has since had two brain surgeries in attempts to remove the tumour on her pituitary gland increase. She feels angry at the medical system for not diagnosing her symptoms sooner.

“If I were diagnosed sooner the symptoms of my disease probably would not have gotten so bad and I probably would not have had to go through everything that I have had to—two surgeries, radiation and now I have to get my adrenal glands removed,” she said.

“I mean my family doctor made me feel like I was just a fat slob who didn’t eat right or exercise. He had been my doctor for years, and for me to gain so much weight so fast he should have known something was medically wrong.”

The doctors were unable to completely remove Ollenberger’s tumour. It’s not shrinking or growing. It is not an option to remove more of the tumour so her next option is to get her adrenal glands removed.

According to Ollenberger, this will make her body not be able to produce any more cortisol. Because you need cortisol to survive, after her surgery she will have to start medication to replace the cortisol that her body needs to survive.

“I will be on medication for the rest of my life,” she said.

Ollenberger is also working with her cousin to create a Cushing’s Awareness day in Canada. She wants to educate people so no one has to experience the things she has.

“It only takes one person to educate many and that is what I would like to do, bring awareness to this disease so others do not have to go through what I had to” she said.

 
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MaryO, 34th Pituitary Surgery Anniversary

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Today is the 34th anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 34 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

A few years ago I went back on it (Omnitrope this time).  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last several years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I didn’t look forward to telling my endo!  I have had a couple more injections.  I’ve been approved for a new gel injection but haven’t started that yet – that would be a three-time injection over 3 weeks.

I also developed an allergy to blackberries last October and had to take Prednisone – and I had to tell my endo that, too!

This year I had squamous cell carcinoma on my nose and had Mohs Surgery.


But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

In Memory of Bonny Hamm, October 12, 2009

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I did not know Bonny personally but she was an Australian  member of the Cushing’s Help message boards who rarely posted.  Her In Memory page on the boards is here: http://cushings.invisionzone.com/index.php?/topic/43923-rip-bonny/

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 Cushings

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. ♥

In Memory: Barbara “Cookie” Rothenberg ~ Oct 11, 2003

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Saturday, Oct 11, 2003

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.

From the message boards thread about Cookie:

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.

Many thanks to Erin for this last look…

We’ll miss you so much, Sweetie.

In Memory of Lenise Petersen ~ October 2, 2002

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in-memory

Lenise’s Original Bio

Lenise, 22 years old, single mother.

After the birth of my daughter I was breast feeding. I stopped, but did not stop producing milk. My doctor told me it was normal. So, I ignored it, and the anxiety, weight gain.

Then I went and saw a different doctor. He ran an MRI and found a pituitary tumor. That was in June. He sent me to my Endo. She diagnosed me with Cushing’s and sent me to a Neurosurgeon.

I’m now waiting to have surgery. I am tired all the time (I have a two year old). I’ve gotten so fat I can hardly move. My face is red all the time, acne too. I can’t sleep at night, and have a hard time staying awake during the day. I’m getting so tired of being tired it’s not even funny.

It’s almost been a year now, since I’ve known, and I really want something done. I want to feel normal again. I want to have the energy to play with my daughter. I feel bad for her. It takes all of my energy just to take care of her all day. I’ve had some depression with this, mainly because of the way I look. I used to look good. Not now. I have major issues with anxiety, I shake all the time. It’s like my nerves are shot to you know where. But, I’m so ready to have this surgery and hopefully get on with my life. I feel like my life is at a stand still waiting for this surgery. So, wish me luck. God Bless.

Lenise

Note: Lenise passed away Wednesday, Oct. 2, 2002 at 23 years old, just after her surgery.

Official obituary.

In Memory of Bettye Jean Douglas ~ September 28, 2016

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Born:  March 30, 1938

Passed:  September 28, 2016

Bettye Jean Douglas, age 78 of Smyrna, Tennessee, died Wednesday, September 28, 2016 at her home. She was a native of Hickman County, Tennessee, and was preceded in death by her first husband Carl Jenkins, and parents James McKinley and Susie Louise Lampley Wright, and siblings, Marie Wright, Pat Nichols, Nellie Tidwell, and Jessie Wright. Mrs. Douglas was a member of Rural Hill Church of Christ and had worked at Ingram Books.

She is survived by her husband, of 23 years, Wendell Douglas; children, Christopher Jenkins and wife Gina of Murfreesboro, Charmaine Herron and husband Steve of Mt. Juliet; step-children; Danna Douglas of Whites Creek, Wendy Morales of Whites Creek, and Kellye Douglas of Whites Creek; grandchildren, Isabella, Matt, Ben, Chip, Gino, Kendell, Jonathon, Michael; great- grandchildren, Steven, Bently, Austin, Gavin, Taylor, Gracie; brother, Billy Ray Wright of Kentucky.

Bettye’s funeral service was held at 10:00AM Saturday, October 1st, 2016 at Woodfin Chapel, Smyrna, Tennessee. Brother Gary Hale officiated. A graveside service followed at 2:00PM Saturday at Five Points Church of Christ Cemetery in Bon Aqua, Tennessee.

Born March 30, 1938, Bettye was tall and thin all of her life, and as beautiful on the inside as on the outside.  Bettye was a beautiful Christian woman.  She loved to laugh and loved a good joke.  She was all about her family and loved family gatherings.  She also loved to travel.  Her favorite vacation destination was Hawaii.

Bettye had two best friends, other than her beloved husband. Gina, her daughter-in-law, and Charmaine Herron, her daughter.  Her daughter Charmaine joked that they were a mix between Charlie’s Angels and The Three Stooges.  No matter what they were like, they had a lot of fun together.

More than anything or anyone, Bettye loved her Lord Jesus Christ.  Bettye passed away due to complications of Cushing’s disease.  Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym.  Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.

Most cannot find the words to describe what Bettye went through during her last months on Earth.   To those left behind, the pain is almost unbearable, but those that loved Bettye find comfort in the knowledge that her health nightmare is over and that Jesus has her now and forevermore.

Credit to Woodfin Chapel and Charmaine Herron

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