Tuesday, September 15, 2009

Cushing's: An invisible illness, too

"How can Cushing's be an invisible illness?"

We are zebras, but our stripes remain hidden behind loose clothing and no one peeks beneath.

Our bodies grow disproportionate, yet we are only seen as obese.

As our muscles atrophy, we are told to exercise.

While we sweat like we have been exercising or we shiver from lack of thyroid hormones within the same few minutes, we have not moved.

Because our faces grow red we hear "you look so healthy", but the cortisol glow ruins our cardivascular system and no one notices.

When we grow humps and bumps in odd places, we are told it's due to being overweight.

While our other hormones plummet our emotions rise, but we are called bipolar, depressed, stressed.

From our blood pressure rising we become hypertensive, and we are handed a pill and told to eat less salt.

With acne worse than during puberty and hair in places it shouldn't be, we are told it must be PCOS.

When hair disappears from places it should be, we are told we are getting older.

Because our blood sugar cresendoes and crashes, we are told to watch what we eat and are called diabetic and/or insulin-resistant.

As edema forces our flesh into shapes not meant to be, we are given a diuretic and told to drink more water.

Cortisol becomes a rollercoaster we ride, getting sicker with each rise and fall, but we aren't offered a way off. "It's stress--take a xanax, an ativan...."

Sleep eludes us when we should embrace it, but encumbers us when we can't embrace it.

Pain is our companion, yet we fear mentioning it for being accused of wanting narcotics--until we can no longer hide it.

Will you look for us? See us? Help us?

Do you hear our hoofbeats? Can you see the stripes?

My "Cushie" friends will have more to add, I'm sure. I hope they will.
Hugs, Robin


  1. When our skin tears and our blood vessels collapse, when we bruise and no one knows why, we are told we are old.

    Heartburn is seen as a gastric issue and no one looks for the cause.

  2. My mom tells me that I had headaches as an infant, and was in the ER many times. Through my childhood and adult life the headaches defined my life. Too many times I beat my head on the floor to ease the pain, to the point that if I could have managed to reach a gun...
    My dear wife had no idea what she was getting into. Many hours she spent holding my head and crying while I was praying for death.
    I was diagnosed with Cushing's disease in 2006 despite all of my doctors telling me that it was too rare or that my tests came back normal. Well not only am I rare, I am episodic, meaning that my body over-produces cortisol at irregular intervals that are not easily tracked.
    I had all of the clinical symptoms, supraclavical fat pads, purple striae on my belly, sides and armpits. Anger, mood swings and depression. Extreme amounts of sweat and high blood pressure, high and low blood sugar levels and a "buffalo hump". I gained 100lbs in 30lbs spurts too.
    I had sublabial transphenoidal pituitary surgery to remove 2 tiny tumors on Oct. 31, 2007. Now I am seemingly in remission, dealing with hormone deficiencies due to the tumors damaging my pit.
    Overcoming muscle wasting is a challenge( cortisol destroys muscle tissue) and emotional/mental issues still plague me. I am an outgoing people friendly individual with alot of anger and sense of abandonment by my friends. It is an uncontrollable feeling and I have difficulty describing it to people close to me. They don't understand the isolation, and view it as weakness or intentional.
    I don't "look" sick. But Cushing's kills just as cancer kills. Without the drama. They have meds to treat all of the symptoms.

  3. You are too young to be ill. It's all in your head (yes, it was all in my head, right smack on the back of my pituitary gland-2 of those pesky little tumors). You're the mom of young children, that will tire you out. Get more rest, eat less, exercise more (I joined a gym, got flu-like symptoms after exercising, and about passed out each and everytime) When I first had an appt. with Dr. F in LA, I had my 3 young sons with me, and I had to drive there from the Central Coast. It normally takes about 4 to 5 hours including traffic. It took me a day. I had to stop every hour, take a 45 minute nap, with me and my sons locked up in the car in a public place, so that I could make that journey to see him. I will never forget that. It didn't take long, after seeing Dr. F, to finally get diagnosed after years and years of searching and almost giving up and succumbing to the effects of the disease. Try not to give up, go through the endless pokes and prods, pee in the hat, fill those jugs, and find solace at the end of the journey in finding that tumor(s) and getting it removed. It's taken me almost 5 years to recover after surgery. I'm still tired, still on a high dose of thyroid meds (synthroid and cytomel), have lost almost all my weight in about a year, occassionally have AI symptoms, still have high blood pressure, still get moody and cranky and cry like a baby at times, but all in all, am doing so much better than I was before surgery. I think the latter is just the aftermath of having the disease for so long. All I can say is "hang in there" and don't let the doctors, family, or friends discourage you. It is worth it to fight even if you don't feel like it.

  4. Thank you for the comments. It's sorta like not seeing the forest for the trees, isn't it? Hugs...

  5. The thing about having a Chronic invisible "rare" disease like cushings is that you have to fight for so hard for validation, diagnosis, and then surgery. Not only does your physical and mental health seriously decline, but then you must deal with the aftermath of juggling all of the hormones and the supplements necessary to balance yourself and create some assemblance of wellness or normalcy in your battered and beaten body. There is no such thing as a carefree day. I have long forgotten what it is like just to be. I can't imagine a life where I didn't have to pop several pills and vitamins, which with food, which on an empty stomach, this one first thing in the morning, that one and hour before dinner, a little spray before bed. I am constantly assessing how I feel, thinking, worrying, scared everyday of my life. EVERY SINGLE DAY OF MY LIFE. Not an hour nor a day goes by that this disease doesn't decide how I think or feel for me. It has taken so much from my life and the lives of my those of whom are nearest and dearest to my heart.

  6. I have to laugh extra-bitterly at the zebras-and-stripes metaphor. When my bariatric surgeon contacted my primary-care physician to encourage him to do some cortisol testing, my PCP was openly scornful about this suggestion. The surgeon had to call my PCP several times before the PCP even mentioned it to me.

    "Oh, that Dr. E," he said with a contemptuous twist of his mouth. "He hears hoofbeats and he thinks zebras."

    Thank God he ordered the cortisol tests anyway. And when the results came back, bless his wee, sarcastic heart for calling the best endocrinologist he could find and pushing to get me an appointment ASAP.

    I'm going to start calling him Dr. Zebra to his face.

  7. Ah, I hope he realizes that is actually a very good compliment!



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