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

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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.

 

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Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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MaryO: Giving Thanks for 30 Years

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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/

 

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