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Ashley D, Possible Familial Cushing’s Bio

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Hi all, I am Ashley.

My mother has Cushing’s and I have just found out I have high cortisol levels. I am nervous about this but if my mother can make it through this so can I.

I am 30 years old and one of my biggest problems is my children are too young to understand what is going on.

I am glad that I have my mom who has already been through this before, so she will understand everything.

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Mika, Undiagnosed Bio

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I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.

I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.

When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.

I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.

We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.

On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.

My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.

My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.

I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.

I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.

Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.

Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;

 

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

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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. 

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

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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.

 

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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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

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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.

 

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J Stone (J Stone), Pituitary Bio

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Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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