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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Janice (Not So Cushie), Upcoming Book, Installment 2 | Cushing's Bios
Jan 12, 2018 @ 08:48:07
Jan 14, 2018 @ 17:24:32
I don’t know if this is the right site to be on but I am so frustrated in finding help. It took almost 12 years to finally get my Cushings Syndrome diagnosis because my monthly blood, urine and saliva tests came back one positive/one negative. Finally I had them send all the test results to NIH and they came back with a definite diagnosis. Went looking for the tumor and it wasn’t on my pitutitary or adrenal glands. After many scans they found a nodule on my lung.. After biopsy it was a carcinoidNET and I had it surgically removed. Then was put on a year of replacement cortisol weaning off 5mg every 2-3 weeks until I reached a normal level. That is when the pain started, circadian rhythms off, depression, more weight gain. Pain is mostly on the right side from my neck to feet and intermittent stabbing on different body parts. Was diagnosed with Post Cushings.. Ruled out a neurological cause. I have been getting support from another lungnoid that has carcinoid syndrome which I don’t have. No doctors have been able to relieve my symptoms. Please help in any way you can.
Jan 16, 2018 @ 12:11:33
Hi Mimi: My heart breaks for you. This disease is so horrific. I can only tell you what I have discovered and what helps me. Since I have taken all starches out of my diet I am having real success with feeling better. I had adrenal insufficiency and now my adrenals are functioning properly because of my new diet. The only way to know if this will help you is by doing it. So I encourage you to change your eating habits to see if this will work for you.
Take out all grains of every kind, all dairy and starchy vegetables eg: potatoes, sweet potato, butternut squash, parsnips, carrots, corn, peas, etc. Ask google which vegetables are starchy before eating them.
I eat all meats and fish, seeds, all fruits except bananas, non-starchy vegetables eg: zucchini, egg plant, spaghetti squash, turnip, cauliflower, broccoli, all leafy greens, tomato, cucumber, radish, etc. Ask google which are non-starchy.
Also have your doctor check your vitamin B12 and D levels. When your eyes water and burn it’s because they are dry. Use tear drops.
Have you ever had your gallbladder removed? When I had my gallbladder removed I asked to see the stones. They were the size of golf balls (5 of them) They were yellow and grey in colour and foul smelling. I said to the doctor, My body is still going to be producing this gunk, but where does it go now that you have removed the gallbladder. He just stared at me blankly. Never did get an answer. I wonder if all this gunk is the starch that my body can’t digest properly????
I hope this is helpful. But this post of mine is very limited. So I suggest you introduce yourself in the I’m new section under welcome and tell us more about yourself and situation. When you scroll down the list of sections you will notice there is a section for people to help answer your questions and that would be a much better place to post things to get more people to react and answer. This is a wonderful caring and sharing site Mary has founded and I know you will find it as helpful as I have. Take Care. Wishing you better health and friendship. jan
Jan 20, 2018 @ 16:56:55
Thank you so much for all your advice. I am not computer savvy yet so don’t know how to get on the other site you mentioned. Please help me as I don’t have much support.
Jan 20, 2018 @ 20:40:44
I’m pretty sure that Janice was talking about the message boards here: http://cushings.invisionzone.com/ You have to sign up to become a member, but it’s free.
There’s lots of info there and you can ask questions if you can’t find what you need that’s already been posted.
Best of luck to you!
Janice (Not So Cushie), Upcoming Book, Installment 3 | Cushing's Bios
Jan 21, 2018 @ 09:21:09
Janice (Not So Cushie), Installment 4 of When Angels Knock | Cushing's Bios
Jan 23, 2018 @ 09:25:44