Home

We Have a New Bio Form!

Leave a comment

We have a new form to add your own bio!

Try it out below…

 

 

Thank you for submitting your bio – sometimes it takes a day or so to get them formatted for the website and listed on the pages where new bios are listed.

If you are planning to check the button that reads “Would you like to be considered for an interview? (Yes or No)” please be sure to read the Interview Page for information on how these interviews work.

Please do not ask people to email you answers to your questions. Your question is probably of interest to other Cushing’s patients and has already been asked and answered on the Message Boards.

Occasionally, people may comment on your bio. To read your bio and any comments, please look here for the date you submitted yours and click on the link.

Please post any questions for which you need answers on the message boards.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Annie, Child With Pituitary Cushing’s

Leave a comment

We’re sharing the story of Annie, who was treated at Eunice Kennedy Shriver National Institute of Child Health and Human Development for Cushing Syndrome.

Thanks to the incredible doctors at NICHD & The NIH Clinical Center, she underwent an extremely successful clinical trial and surgery and is now thriving like a child should.

Text alternative to video

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Janice (Not So Cushie), Installment 4 of When Angels Knock

2 Comments

Read Installment 1 here

Read Installment 2 here

Read Installment 3 here


4th installment of

WHEN ANGELS KNOCK

by

Janice Barrett

 

                        CHAPTER 2

     By late afternoon, I am taken out of lockdown and put into room 206, a semi-private room in the mental ward of the hospital. It looks like any other room in any hospital. I have no roommate and don’t like being isolated; it gives me more time to wonder about my wacko behaviour, speculating about whether mom’s disease is inherited. I have my mother’s colouring but my father’s features.  

     Alone in the room, alone in my thoughts, knowing what sent me other the edge, wondering what is happening to my life, I’m startled by a rap on the door. A nurse pokes her head into my room, “The Psychiatrist would like to see you. Follow me,” she says.

     I tag along watching her back not really paying attention to where I am going. There is no nameplate on the door we enter. It’s a stark office with a desk, three chairs and no personal family photographs, books or certificates. Nothing to signal ownership. A white-coated doctor sits behind a desk and looks at me, then drops his pen on his pad. He says thank you to the nurse who leaves, closing the door behind her. 

     He motions to the chair across from his desk. “Have a seat.”

     He is dark skinned and I wonder what nationality he is. Looking at his name badge doesn’t help. There is no way I can pronounce that name.

     “Do you have no any concerns?” he asks.

     I’m sure I must have looked at him shocked. Between his heavy accent and his words, I can’t understand what he’s said. And he’s looking at me like I’m slow, because he says again almost irritated, “Do you have no any concerns?”

     A few more now. They’re growing by the minute. Of course I’m concerned, I’m in a mental ward. Is that a question? How am I to answer that? It’s too general. I need a specific question; concerns about what? About my hospital stay, the room, the nurses, about my life and what part of it? 

     “I think I am paranoid schizophrenic like my mother.”

     There I did it. That’s a legitimate concern. Maybe it will be all right after all.

     “No any paranoid person would walk in my office and articulate that. They would try to hide it and that was the one thing you say first. So you no any paranoid.”

     Oh My God, I think I understand him. I don’t know if that makes things better or worse. And think of the eye doctor when he’s examining your eyes and asks better or worse and when it gets to that point where you just aren’t sure; that’s where I am. But his words are a relief. I’m not schizophrenic. I had worried for years that I would be like my mother. I trust what he says as truth. 

     The Psychiatrist picks up his pen again. “Do you know why you are here?”

     “I went crazy.”

     “You remember?”

     “Yes.”

     “What number medications did you take?”

     “Medications? I don’t know what you mean.”

     And then I recognize Bob’s gym bag on the corner of his desk. He stands up to place the bag between us on the desk.

     “You recognize this?” he asks.

     “Yes, it’s my husband Bob’s gym bag.”

     The Psychiatrist opens the bag. “Your husband find medications. Did you buy?”

     “Yes. They’re vitamin pills.”

      “They are 37 medications.” 

     When the vitamin pills are scattered between three bathrooms and kitchen cupboards, it doesn’t seem a lot until you see them dumped in one bag. Most of these bottles have been kicking around our house for years and are long expired, but getting rid of them is a hassle. You can’t flush them down the toilet or put them in the garbage. I always forget about them on hazardous waste day when I get rid of my paint cans.

     It’s a bag of failure, a multitude of good intentions, inspired by doctors on television, or magazine articles over the past ten years to eat right, exercise and supplement with vitamins. A reminder that, I can’t stick with any program.   

     The Psychiatrist stares into this bag without examining the bottles. He doesn’t even put his hand in the bag to move them around. He sits forward in his chair, looking at me, expecting me to come up with some revelation of some kind. They are frigging vitamin pills. What does he want from me? Yeah there are a bunch, but many of the newer bottles only have a few pills out of them, because when they make my stomach bloat, I stop taking them and try and find other ones which my body can tolerate. He looks at them as some kind of evidence; for what I can’t imagine.       

     “What number medications you take from the bag?”

     “I am not on any prescribed medications from my doctor. I took vitamin A, C, D, E, and the two homeopath liquids my Chiropractor gave me, a liver-detox and lymph something drops.”

     “Here 37 bottles your husband find and put in bag. You take each?”

     “No. Four vitamins and the homeopath stuff.”

     “How you are feeling now?”

     “There’s something physically wrong with me. It’s really serious. Whatever this thing is I have, it’s weird. I’m weak and my stomach bloats up huge.”

     The Psychiatrist lays his pen down, falling back into his chair.

     “I feel like I’m going to collapse, am weak all over and get tired out fast. My head is in a fog and I get confused with pressure in my head. Sometimes my words get mixed up and my eyes are gummy and blurry.”

     He stops looking at me, his eyes roaming the ceiling, his arms crossed. This Psychiatrist is just like my family doctor, Dr. Smith. Just like this Psychiatrist, Dr. Smith won’t even acknowledge that there’s something physically wrong with me. He looks at me like I’m fat and lazy. Like I won’t help myself by dieting and exercise.

     If it weren’t for Nurse Hill, I wouldn’t know what’s wrong with me. She’s the only one who listens and believes me.

                             ***   

     I’m at Dr. Smith’s office so much, I don’t even bother sorting through the magazines. I’ve read them all. Nurse Hill calls my name and takes me to a room she works out of.

     “Dr. Smith is on holidays so you will be seeing a locum doctor,” she says.

     I wonder what kind of a doctor that is; locum at least it isn’t “loco,” but I never question, it isn’t my nature.

     The nurse does the usual blood pressure and temperature.    

     “So how are you feeling?”

     “I’m really sick but I have so many weird symptoms.”

     “Like?” Nurse Hill takes out pen and paper and lists them as I speak. She believes what I’m telling her! I don’t have to convince her I’m sick. I can relax, reassured that she’ll help me.

     Without any hesitation, she says, “This sounds like Cushing’s Disease.”

     She taps diligently on her computer keyboard until the screen displays large letters reading: “Cushing’s Disease and Syndrome. “Yes, you have almost all the symptoms listed here. I’m going to recommend blood work be done to investigate this. The locum doctor will be in shortly,” and she leaves.

     I let out a big sigh. That it could be so easy after all these horrible months of suffering. Back and forth numerous times complaining about these same symptoms, with Dr. Smith dismissing them and me over and over again.

     I wait, hopeful. The locum doctor sits down. He examines me and questions me further and writes out a requisition form for me to take to the lab to have blood work done at eight AM, precisely.

     I’m the first one in line at the lab the next morning. It’s a quick procedure and I am out the door in no time and back home. I check many websites on the internet about Cushing’s disease. The more I read about it, the more certain I am I have it. These sites are describing what is happening to my body.

                            ***

     And now here I am stuck in this hospital when I need to follow up on the blood work results. 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Janice (Not So Cushie), Upcoming Book, Installment 3

1 Comment

Read Installment 1 here

Read Installment 2 here


3rd Installment of

WHEN ANGELS KNOCK

 

Dad’s face is twisted in pain. He can’t face the way mom is: the anger and hate she heaps on him. The fear we live with crushes his mild spirit. Dad who could never say anything negative about anyone, pretends life hasn’t changed, mom hasn’t changed and takes comfort in routine.

     “You have to drive Mom to Goderich Mental Institute tomorrow. They’re expecting her. Here’s the address and call the doctor.” I shove my notes at him.    

     The next day, Mom is angry, but gets into the car without a fight. It’s a long, quiet ride until we drive by the ‘Welcome to Goderich’ sign. Then mom says, “You can’t lock me up. I’m not going. Why do you hate me? How will you manage without me? You don’t know how to pay the bills, collect the rent, make meals, do laundry. You can’t do anything without me.”

     She’s right. Mom’s the one who looks after us and is business savvy. She’s the one who made the decision to move here. She chose the house. It’s a large flat in downtown Stratford above a parts distribution company. She bought the building so we can get the rent from the business to offset the mortgage. Mom maybe mentally ill, but she is still business savvy and unbeatable at bridge, even though we think she cheats; we can’t catch her.

     “Why don’t you tell me off?” Mom screams. “Take charge for once in your life. Be a man! Tell me off!”

     There’s a pleading quality to her voice. Then she leans forward from the back seat poking her head between us in the front. Her high pitch shrill fills the car, “Tell me to shut up.”

     “Shut up,” Dad yells.

     It’s the first time I have ever heard him raise his voice.

     And Mom falls back in her seat laughing then crying, relieved that maybe this time he will take charge.

     Four months later, we travel this road again to pick mom up and bring her home. We are heading out the double-door exit when mom says, “I don’t know what the doctors will do without me. I confer with them on every case. They rely on my judgment.”

     I look at Dad and say, “We’re taking her out like this?”

     Dad won’t look at me. He keeps walking, head down, holding mom’s hand.

     Once home, living our pretend lives for the neighbours, mom curbs her physical violence with cruel, hurtful remarks. Her verbal attacks can last for an hour or more. I plead with Dad to make her stop, but he always answers with, “It’s the illness, it’s not your mother.”

     Like that somehow makes it right when she screams at me,  “No one will ever love you.”

   For the next two years, Mom hasn’t shown any signs of violence and I find myself wondering if she really is schizophrenic. When Mom finds out my boyfriend Bob has proposed to me a couple of times, she makes plans to move to Kitchener to break us up.

     Dad of course agrees to the move, but is surprised when once in our new home, mom kicks him out. With only the two of us in the house, mom no longer has to be on guard. Over time, she learns how to break me down, make me cower. I am the one who sent her away. I am the one who has to be punished.

     “There are only two people in this world I hate and that’s you and your father. But I hate you more because you were the one who sent me away. I hate you.” Her spittle flicks onto my skin. “I hate you. I hate you. I hate you.”

     She knows how to push me into a corner without ever touching me. Making me back away from her and her vicious words, cringing until my back hits the wall with no escape. I can’t retaliate with hurtful words or even the truth because it gets too scary when I push back.

     This goes on for months on end. She’s right. I’m to blame for sending her to that place which didn’t help her and now there are two of us who are broken. Because I never want to be in charge ever again. I will never make decisions where things will be my fault. I will be a follower. Broken. Indecisive. Afraid.

     Eighteen and in grade thirteen, I dread going home after school and work. I try being invisible, tip toeing around, avoiding any kind of interaction. I can’t sleep, her words torment me. Even alone in bed at night, I tremble, my body twitching for hours with me unable to control it, afraid that her demons will get me while I sleep.

     I get up to get a glass of milk. The glass shakes so bad in my hand, I can’t drink from it and put it down when I hear a quiet knock at the kitchen door. I don’t know why I’m not afraid to open the door. It’s late.

     Bob is there. I can’t stop trembling when I tell him what’s happening. He is the only one who cares about me.

     “You can’t live like this anymore,” he says taking charge, confident and controlling. The opposite of my Dad. Bob is the person, I wish my Dad was.

     “We’re getting married,” Bob says.

     My White Knight, my hero rescuing me from this life to give me a happily ever after.     

     The crackly voice interrupts the music again, “Code White, Code White.”

                              ***

     Something so scary happening that they have to use a code to bring nurses and security guards on the run.    

     Shifting in bed, tugging at the blue gown to close the gap at the back, I feel the poetic justice of it all. My mother, forty-years later, finding a way to punish me from the grave, for sending her to the asylum, to make me crazy like her.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Janice (Not So Cushie), Upcoming Book, Installment 2

2 Comments

Read Installment 1 here


WHEN ANGELS KNOCK

by

Janice Barrett

     I can’t fight back, have no breath to plead. She pulls out a butcher knife. The one we use at Christmas and Thanksgiving to carve every turkey. The wide 16 inch blade looks more like a guillotine above my head and I know mom’s hand is positioned for that kind of thrust.

     I look away, waiting for the blow I know will come and see my 11- year-old neighbour’s face pressed against our glass front door, Girl Guide cookies in her hand, eyes wide.

     “Run. Get out!” I yell.

     She’s frozen like me.

     “Get out now,” I bellow louder.

     Startled, my mother puts the knife down just as the cookies hit the cement front stoop and my neighbour disappears from view.

     Mom sits at the kitchen table with pen and paper. “What’s happening to me? What am I doing? There’s something wrong with me,” she says. Mom mumbles symptoms to herself, scribbling them on the page. As the list grows longer, mom becomes more agitated until she crumples the paper up and throws it. “There’s nothing wrong with me,” she screams.

     I run out of the house, down four blocks to the doctor’s office, burst through the door and say, “I need to see the doctor.”

     “Do you have an appointment?” the receptionist asks.

     “No.”

     “Take a seat.”

     I can’t sit. I pace back and forth in the crowded waiting area. I stay quiet while another name is called, and a man follows the nurse down a hallway.

     My body shakes and my head vibrates until the man comes out, and then I scream at the nurse, “I have to see the doctor.”       

     “What’s wrong?”

     “My mother tried to kill me.”

     The nurse leads me into the doctor’s office. I relate my story to the doctor who advises me that mom is paranoid schizophrenic and warns me that in her present condition she may be suicidal. He reassures me that at the end of the day he will stop by my house to examine my mother.

     Fearing for Mom’s safety, I run back home to check on her. She is sitting beside the record player, smiling her big-toothed grin with Elvis stuttering, the lyrics caught in the scratches on the vinyl. Mom not noticing. Mom stuck in her own groove trying to block out her voices.

     Afraid that Mom will overhear me on the phone, I leave to find a phone booth and call Dad’s office in Kitchener, a 40 minute drive from our home in Stratford. It is two hours before the office will close. I am told he is out for the day. He left no contact number where he can be reached. There’s no one to call. I don’t know why we had to move here away from family and friends. 

     And I’m not calling my sister Jackie at university. She’ll want to come home. One of us needs to escape this life. Dad’s no help. It’s up to me.

     I’m relieved when the doctor finally arrives to examine my mother.

     “Can’t you turn that off,” the doctor motions to the record player while Elvis stutters.

     “It helps keep her calm.” My words breathy, pushing past the overwhelming emotion of letting go of the responsibility to have someone else in charge. Relief at last.

     He moves his stethoscope over mom’s back. “At least change the record.”

     I welcome the excuse to walk away. I pull the record stand over by the couch and sit down. It would have been easier to sit in mom’s chair to sort through the records, but I won’t sit in her chair doing what she does, afraid that it will turn me into her.

     They are talking in quiet tones. Mom almost whispering her answers. I can breath again. I don’t care what they’re saying. He’s taking over, so I don’t have to be in charge any more.      

     When the doctor finishes, he sends mom over to her chair by the record player. I put on The Beatles “Hey Jude” another one of her favourites. The lyrics, ”to make it better,” vibrating through my body while I walk to the dining room table. The doctor is talking to me, but it’s the Beatles I hear singing better, better, better. The sound escalating better, better, better and I’m afraid to hope.

     “Where’s your father?

     “I don’t know.”

     “When does he usually get home?”

     “Not until late. Not until mom goes to bed.”

     We discuss the need for her to be hospitalized.

     “She is paranoid schizophrenic,” he says and advises me which mental asylum she will be put into and the procedures he will implement. I take notes to relay the information to my Dad when he shows up.

     “How old are you?” he asks.

     “Sixteen.”

     “Do you have any relatives or adults that can stay with you here until your father gets home?”

     “No. There’s no one. We just moved here.”

     The doctor speaks to me like an adult and all of the decisions are made by the two of us. He writes his phone number on a prescription pad, rips it off and hands it to me.

     “Have your father call me when he gets in,” he says. “If anything else happens before he gets home, get out of the house and call me.”

     “Thanks,” I say, watching him walk out the front door.        

     Dad gets home at 11pm.

     “Where were you?” I ask. “I called all over.”

     “I had to go vote. It’s election day.”

     “You left me by myself when you knew this was the worst mom has ever been. You didn’t even leave a number where I could reach you.” I glared at him in silence until he looked down at his scuffed oxford shoes.

    “I had an obligation to vote,” he says.

     “What about me?” I yelled. “You have an obligation to make sure I’m safe.”

     “It’s my civic duty to vote.”

     His words knock the fight out of me. How can I argue my life is more important than voting? Why would I need to? Why can’t he see? I can’t hear the lame excuses that are more important than me. It will hurt too much.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

Janice (Not So Cushie), Upcoming Book, Installment 1

7 Comments

Janice writes: I have written a memoir about my experiences with Cushing’s Disease. An agent is interested in it but says I have to have a platform before she will represent me. So I need a following. I want this book to get out to show people the effects of Cushing’s in our lives and to help the families going through this to better help and understand the person suffering with this disease. In the book I mention this site. Unfortunately I found it after I already had the pit surgery.  I have also written a play based on my memoir. I am on a mission to inform people of this disease.


 

I will be adding to this post on Wednesday, Friday and Monday for people who wish to follow me.

The following is an excerpt from my memoir which is about Mary O’s site and the people on it.

“Looking up medical references, I find a Cushing’s help and support internet site, founded by Mary O with over 6,000 members world wide. Story after story all screaming the same thing: believe me, listen to me, I’m sick. Doctors telling them to diet and exercise or that this is such a rare disease they can’t possibly have it. Excuses to dismiss us. It isn’t that the doctors don’t have the knowledge, they won’t believe us. So many, too many, my story isn’t unique. I am the rule and not the exception. I have to make people believe us and so I write.

WHEN ANGELS KNOCK

By

Janice Barrett

I wake up aware that I’m on display. There are no tracks in the ceiling for curtains to be drawn around my bed like most hospitals. I want to stick my thumbs into my ears and wiggle my fingers saying, “booga booga,” but know this is not the place or time. These people will not have a sense of humour. The white ceiling melts into bare white walls oozing an antiseptic smell. I know why I’m here. I went crazy. I felt the snap.

A crackly voice over a speaker announces, “Code White.”

I’m thirsty, but beside my bed the water bottle is empty.

“Code White.”

Built into the room is an office with a glass partition  where a nurse is standing. The mattress crinkles like plastic under the sheet when I roll out of the single bed, in a row of single beds. Walking up to the window, without saying anything, I slide my empty bottle through a circular hole in the middle of the glass and she, without saying anything, passes a full bottle back to me. I saw this once in a movie and I know I’m in lockdown. She is Nurse Ratched and I’m in my own sequel to “One Flew Over The Cuckoo’s Nest.”

I don’t want to be crazy like my mother. Death was her escape. I don’t want my children to live with the on-edge fear I did. Afraid that something they will do or say will trigger a psychotic episode and make them feel responsible.

“Code White.”

Music replaces the crackly voice, and I think of mom’s favourite song and her sitting beside the record player for hours on end with me hoping I’m safe. I lived in that world of “if only” for too long.

If only I hadn’t wanted toast.

***

I was safe at high school when my name was called after the morning announcements to come down to the Principal’s office. Dad was there. He said mom isn’t “feeling well.” I hate those words, his code words for scary psychotic. And I have to go home to look after her.

Mom looks okay, hair and make-up done to perfection, listening to Elvis Presley’s “Blue Christmas.” But I never know when they will come, the voices in her head.

As long as the record plays, I’m safe. It’s her distraction from the voices. Five hours and still when the needle lifts off the vinyl, mom’s hand reaches across to replace it again.

I keep mom in sight in the livingroom when I go to the kitchen to make toast. The wooden door on the breadbox hangs lopsided, the hinges pulled out from the wood, the handle broken, a thin post lying on the countertop. Mom is watching me. I pretend I don’t notice the breadbox hoping then she won’t react.

The needle scratches across Elvis’s lyrics, and I’m sorry that I wanted toast.

She bolts out of her chair and I freeze when I see her hazel eyes bright with her demons.

“He’s coming back to kill me. The breadbox slammed down three times to warn me that your dad is going to kill me with a gun or knife,” Mom says. “Please don’t leave me. Your dad manipulates people, he controls them,” she screams.

The cords in her neck protrude and her lips stretch to a thin line to spit out her phobia. “We’re his puppets. He’s pulling the strings making us do things.

Hate etches her skin, pinching her nose, turning her hazel eyes into green, glowering slits. Numbed by fear, I can’t move, can’t speak, my body vibrating.

Mom’s hands are on my shoulder shaking me to make me understand her terror. Her fingers kneeding into my skin, nails digging viciously when she throws me up against the kitchen cupboard. My head pounds the wood and I hear a small crack before she slams my numb body against a cabinet shrieking, “You control people too. Who do you control? I want their names.”

I try to get away, but she thrusts me back, a pull handle on a drawer jabbing into my hip.

“Give me the names,” she yells, and hurls me backward onto the countertop. I gasp, gulping for air when she hammers her arm down across my chest. Her arm, a metal bar, that holds me down, while her boney elbow scores into my ribs. Her eyes are as terrified as mine. Her weight crushes me as she opens the knife drawer by my left hip. The sound of metal blades clang while Elvis croons, “without you.” And I am frozen.

 

Stay tuned for the next installment.

 

HOME | Sitemap | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki

MaryO: Giving Thanks for 30 Years

Leave a comment

 

Today is the 30th 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 30 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.  Even when I got to 10 years NED (no evidence of disease) from cancer, I couldn’t go back on the GH.

However, this year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During that surgery, 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 couple 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.

My mom has moved in with us, bring some challenges…

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 a couple months ago.

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

To be continued in the following days here at http://www.maryo.co/

 

Older Entries

%d bloggers like this: