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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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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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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/

 

Cathy T, Pituitary Bio

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Hi! My name is Cathy Tia. I’m 27 yrs old and was diagnosed with Cushing’s disease 6 yrs ago while doing my first year of an education degree. I had worked in the fitness industry at that stage for 5 years and was fit and healthy but as soon as I started to fall asleep at the wheel driving into varity. I thought something was wrong symptoms persisted and weight gain fatigue, sweats, acne no periods. The list goes on, started to get out of control.

I went to a endo and she did some tests on my bloods and was shocked that my cortisol levels were in the thousands then we did some 24hr urine tests and they were as high as 3000. After nothing showed up on the MRI scan we did the petrosal sampling and it showed the source from coming from my pituitary gland so I then went to hospital for them to have a look at my pituitary gland they saw no visible tumour and that was that I then was put on a course of drugs as I kept going into adrenal failure where my cortisol levels were as low as minus 10 so no wonder I was in agony and feeling like I was going mentally insane. My weight dropped to 48kgs at the time of low cortisol, then my body changed again weighing in at 70’ish kgs.

I started to get heart palpitations and was exercising so much I nearly dropped dead but nothing I did seemed to help the weigh loss. My cortisol was tested again and again it was high, I went on a block regime to mimic what it would be like to have no adrenals before the trauma of the surgery well as I expected they didn’t bring down the cortisol in fact it increased. I went off all drugs as they made me feel so sick and I couldn’t even hold a job because of no energy etc.

Now 2 yrs later it is back with a vengeance and again there was talk of removing my adrenal glands but I refuse as the pills didn’t work so why would the surgery again? I said I would try the drugs. I have been on them 4 months and my levels which are meant to decrease have gone from 284 this week to 1225. My endo is at her wits end I’m going back to the hospital on Wed but I feel there is no light at the end of the tunnel as I feel we have exhausted all my options.

I’m newly married only 9 months ago I have the most supportive wonderful husband but feel bad for him as we can’t conceive and do normal things young married couple do as I’m always tired and hate going anywhere because of my appearance. If anyone has any answers out there or just words of support I would love to hear from you.

cheers, Cathy ‘mad’ Tia ( at least I feel mad)!!!!!!!!!!

Update Monday June 30, 2003:

Hi. Well, I have had more tests and yes they confirm that my Cushing’s disease is pituitary based, I had an MRI scan last night so we will wait and see if there is any visible change from the one I had done 4 years ago, then from there surgery.

I am gaining more weight and my skin is full of acne even though I’m on an antibiotic and the pill to help it, My periods have stopped even though I’m on the pill and the hair on my face and body is really embarrassing. I have totally lost confidence in myself and any situation I feel is stressful even paying the bills is an effort.

My diet is still very strict only protein and I try and walk and do weights everyday but I feel I’m losing the battle. I hate the waiting for results I just want them to hurry up so I know what my options are start them and get on with life!!!!!!

Frustrated Cathy ‘mad’ Tia (at least I feel mad).

Update Wednesday July 9, 2003:

As you all know I went for an MRI scan last Monday and the Monday just gone I recieved the news I had a 7mm tumour on the left side of my pituitary gland which means removal of that left side, I’m relieved after 6 years of cyclical Cushing’s there is something to show for it at the same time I’m terrified not only about the surgery but all the after effects the drugs the quality of life after this terrible disease!!!!!,

My husband and I are have amazing faith and support from family and friends but it is still such a roller coaster ride we are only 27 years old and have been married for 10 months we don’t know if we will ever have children which is so important for us. We don’t know where life will take us but we do and have accepted this is for a reason god works in mysterious ways so please keep us in your thoughts and prayers as we do for all you fellow Cushing’s patients out there what ever the stage of disease you are at, never ever give up be strong.

cheers, Cathy Tia from little old New Zealand.

Update August 3, 2003:

Hi everyone well it is now the 3rd of August 2003 and I am going to the hospital on Tuesday here in little old New Zealand, to have a meeting with the brain surgeon to go through the procedure. They have found a pit tumor on the left side of my gland and need to remove the whole side. Wow, pretty scary but at least I’ll feel better after 6 yrs of not such great health.

I’m excited about my future and hopefully my husband and I can start our lifes together with children in the future, I’ll write on Tuesday night to tell of my surgery date, if I get one.

Keep the faith, everyone. There is always hope we are the strong ones what doesn’t kill us makes us stronger! Feel free to email me on cathyscurves@hotmail.com.

Update August 22, 2003:

Hi everyone well I haven’t written in a while as you know the hospital systems are slow at getting things moving. As you know a tumour was found on the last MRI but now they think there is more to it so Monday 24th August, tomorrow, I’m going for another CT scan then surgery although I don’t have a date for surgery. I’m hoping it will be in the next month because I want to be out of hospital to share my 1st year wedding anniversary with my wonderful husband my angel here on earth at home not in hospital. I’ll keep you all updated this week for the next chapter.

Hang in there everyone. Remember, if we all stick together and send love through our thoughts we will beat this thing!!! please email me anyone if you want to talk I know I’m down here in little old New Zealand but don’t hesitate.

Update September 15, 2003:

Hi everyone it’s Cathy here agin from little old New Zeland, I finally have a surgery date it is on the 15th of October one month away it’s been a long wait but now I know the date I can plan my life!!!! I should be fighting fit for xmas day that was my goal so My husband and I can plan a holiday a family and get back into full time work. I’m so excited.

Hang in there everyone and please send your prayers and happy vibes my way on the 15th
cheers Cathy ‘mad’ Tia

Update October 10, 2003:

Hi everyone. Well, only 4 more sleeps to go until my 2nd pit surgery. Let’s hope they get the bugger this time. I’ll update you all as soon as I can focus on the computer screen
cheers Cathy

Update October 27, 2003:

Hi everyone! Well, it’s 2 weeks tomorrow post op. I’ve been home 1 week and recovering well, things went to plan as you all know the discomfort only last 3-4 days and my cortisol is dropping which is so positive. We will know for sure in a month. I’m hoping it comes down and stays down so we know I’ve been cured. I’ve already lost 2kg’s and the high colour in my face has gone down my joints are not as sore and my acne is clearing up. I can’t believe in 2 weeks. I’m already looking better. I ask you all to keep praying and sending happy healthy thoughts and vibes my way as you all know this is just the beginning as it is such a reecurrent disease. I really want to avoid having my adrenals out which they will do asap if my cortisol doesn’t stay down. They say this is the only way for sure to cure Cushing’s disease.

But I send hugs and kisses to you all and anyone whos going to have pitaitary surgery either for the 1st time or 2nd don’t worry just relax and go with it rest and recover as much as possible then get your life back please feel free to write to me my email is in this bio.
cheers Cathy ‘Mad’ Tia

Update November 26, 2003:

Hi all, well it is 6 weeks today since my second pituitary surgery, I developed diabetes insipidous but that has gone now hooray no more peeing every 2 minutes, ha, ha.

Well the last 2 blood cortisols were high again so I’m really bummed out the first 3 weeks after surgery it seemed to be on the way down and I lost 5 kg’s I was elated, but now the symptoms have returned the tiredness puffiness etc and I’m not even on any replacements I haven’t had a period so it looks like the adrenals will have to be removed bummer!, I have just completed a 24hr urine collection so the results should be in early next week everything hinges on this result if it is high they are taking me straight back in for the double adrenalectomy if anyone has any suggestions or has had the same experience please email me I feel depressed again just as I thought I had my life back on track.
kind regards Cathy ‘Mad’ Tia

Update December 4, 2003:

Hi everyone me again, well unfortunatley my cortisol is high again after 6 weeks post op so I am booked in to see another surgeon next Wednesday to talk through the procedure of a bilateraladrenelectomy (what a mouthfull), could anyone who has had this done please email me as I’m terrified and want to know what to expect in regards to recovery time, sickness, etc

keep your chins up

talk to you when I have more gossip
Cathy ‘Mad’ Tia

Update January 29, 2004:

Hi all well happy new year to you all. I have a CT scan date on Feb 16th of my adrenal glands then surgery will follow hopefully soon after that I’m scared and would love to hear from others who have had their adrenals out because I’ve heard some horror stories, please email me.

I have had an interview with a local magazine that goes out to the nation telling my story and journey with Cushings disease it was fun my husband and I have had photos etc I will post it when it comes out next week I just want others to be more knowledglable and perhaps people may come forward and talk to me if they suspect they may have it.

I would love to set up a support group in New Zealand because there is no one I can talk to here.

Well I’ll talk to you all soon and please email me if you have any words of encourgement.
God bless Cathy ‘Mad’ Tia

Update February 3, 2004:

Hi all! Well, I have more exciting news from the magazine article that has only been out two days. I have been asked to go on a morning talk show televised across New Zealand to talk about the disease and my story and have already recieved emails from others in NZ that have been cured. It is so positive it makes me want to get on and move forward to help others when I’m finally cured hooray! I’ll update soon when I’ve been on TV.

God is good god bless you all Cathy ‘Mad’ Tia

Update March 30, 2004:

Hi guys. Well I finally have a date for my adrenal surgery. 2 failed pit surgeries so here is their last ditch attempt to cure me hooray!

It is scheduled for the 15th of April 2 weeks time so I’ll get back to you as soon  as I’m up to it, please pray for me as this is the final time hopefully then I’ll be rid of this nasty disease.  I would love you guys to email me whoever has had the adrenals removed to tell me the good and bad things during recovery so I’m prepared.
cheers everyone and hang in there.

hugs cathy ‘mad’ tia

Update April 29, 2004:

Hi everyone. I’m back it’s 2 weeks today since my surgery the removal of both adrenal glands. I feel I’ve been to hell and back over the last 7 years but I’ve come out on top I’m sore and bruised but feeling the best mentally and emotionally the best in almost a decade. I’m on a normal dose of hydrocortisone which understand the average person produces and have already seen marked changes in my appearance like redness had gone, night sweats aches nausea are all gone in only 2 weeks so I’m looking forward to getting my body back.

Thank you all for your support and I will keep you updated as to my situation. You all must hang in there and fight fight fight! Your day will come in those dark days of despair never give up tommorow is always better and you don’t want to let this disease win you can do it.

Update July 3, 2004:

Hi everyone well it’s been ages since I wrote I have had both adrenals out and finally I feel normal most of the Cushing’s symptoms have gone and the old Cathy is slowly emerging it is nearly 3 months since surgery and I have lost 9kgs and am looking not so tired and puffy hooray when people ask how I’ve lost the weight I say I’m on a cortisol diet which they laugh and don’t understand but I know you all do.

Well if any of you are scared to have this surgery don’t be they do it all keyhole so it’s neat and tide and it has changed my life I feel like a near normal 28 yr old who can restart her life my husband and I are so happy we have been given a 2 year gap to try for a family before radiation to the pit gland to avoid Nelson’s Syndrome so it’s not over yet but I believe it will be all worth it soon.

Well take care all hold your heads up high and be strong.

Update September 26, 2004:

Hi it’s Cathy Tia here again, well my husband and i have just celebrated our 2nd wedding anniversary cushing free hooray!! IT IS A BLESSING TO HAVE MY HEALTH BACK. It has been five months since my adrenal surgery and have had one adrenal crisis due to an underlying viris which was a bit scary i was in hospital for 5 days being pumped full of hydrocortisone ironic really after 8 yrs of having too much oh well, i’m back and working full 3 different jobs and loving life. All of you out theree still waiting to be cured please hang in there it is so worth it you will never take life for granted again.

God bless to you all and please never give up.

Update January 31, 2005:

hi all well a little update to my story. It has now been 9 months since i have my adrenal glands removed i have lost 27kg’s and people are starting to recognise me again all of the symptoms are gone i now have addisions disease as my adrenals can shut down the meds i take are cortisone and hydrocortisone to help with balancing my hormones out. I have had one adrenal crisis but recovered well. Peter my husband and i are on the fertility track now i am on fertility drugs to hopefully bring us a little bundle of joy this yr i also have PSCO so having a baby is a challenge but i know God will bless us when the time is right. I am working again like a normal person and can get through the day without a sleep.

Life is great. To all of you in the beginning, midst or end recovery phase of this terrible disease please always have hope and determination, remember you are what you believe so keep positive.

God Bless Cathy ‘mad’ Tia

Update January 31, 2006:

Hi all well it’s beena yr since I wrote. Alot has happened for my husband and I. Last time I wrote we were embarking on a huge rollercoaster ride with IVF fertility treatment and guess what we have had two cycles and the second one worked like a dream. We were given 15% chance of ever getting pregnant with the trteatment so we are proof that doctors only know so much with much gusto determination prayer and support from family and friends we did it we are now 3 and a half months pregnant due August 10th 2006. We feel so blessed and want to let you all know this can happen for you keep the faith and search inside yoiurself about what your life is worth this disease is only a label not who you are, seek and you will find the answers even if it has taken yrs it’s taken me 10yrs of being sick surgeries lost hope and regained faith. God has a plan for all of us and now I’m going to be a mum i can hardly believe the blessings.

I have had 2 trips to the emergency ward with adrenal crisis being pregnant does put stress on the body so now i have altered my drtugs i feel great i have only had 2 weeks of morning sickness and noew i have full energy back and only get tired like anyone at the end of a day. I ahd emergency surgery last week for an abcess caused by mastitis even though i haven’ breast feed they tink because my immunity is lowered by having no adreanl glands it wa so serious.

In my mind I know i always have to be careful but my advice to eveyone is live each day like it is your last be knind and never stop loveing or giving because it will come back in ten folds as it has for me.

God Bless and kind regards to all my fellow cushies, families and supporters.

Hugs cathy tia

Update October 25, 2006:

Hi cathy Tia here from New Zealand last time i was trying to concieve through IVF and we did it we have had a beautiful baby girl Grace Ruby weighing 6 pounds 13 ozes 3 weeks early all is grand with all of us healthy and loving being a family. Keep the faith and hope if you believe with your heart your dreams will come true.

cathy tia

Update February 22, 2007:

hi 22/2/07 cathy here agin

i now have another new 5mm tumour on the right side of pit gland due to having nelsons sydrome after nearly 3 yrs ago having boyth adrenals removed

any suggestions on what to do? they want to give me radation. has anyone had this?

cheers cathy

Update May 3, 2007:

hi all well my daughter is now 9 months old , I mde the decision to havea breast re3euction last week and am so thrilled with the results the 12 yrs of cuhsings and three yrs of addsions (removal of glands due to recureent cushings) ravished my body i feel young again and sexy hooray for my husband!!!

I had a very scary time this week though due to the stress of the surgery on my body my addisions played up big time and i ended up in Er twice having cortisol shots and saline to give me balance, i’m still very tannedyellow and can’t seem to get on top of the balance but feel better than last week.

Has anyody experience addisions after cuahings?, i’d love to hear from you and ask how you mmagae your balances of medications and water balance.

until next time,

Hugs feloow cushies/addisions

Cathy Tia

Update September 17, 2009:

hi all well its been a while my daughter is now 3 and i have a beautiful miracle son called Elijah who is now 6 months old , i ahve had a great run since having my adrenals removed and had the breast reduction i’,m even breast feeding a real miracle and testament that if you have hope you can achieve anything. i ahve had many talks to churches and articles written to educate people in New Zealand and hope to give them hope whatever their circumstances.

unfortunatly i may ahve developed nelsons syndrome so am having an MRI in 2 weeks to see what the pituatary tumour is doing if it has grown i’ll have radiation to shrink it.

hope this finds you all well.

God Bess Cathy Tia

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