Support for Those Living with Adrenal Insufficiency

Five Challenges with Cushing’s Disease

Five Challenges with Cushing’s Disease

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Cushing’s Help Organization

 

 

 

Challenges are unique to every individual, but when you stop to think about what a person with Cushing’s has to go through every day, you run into challenges you wouldn’t expect with a healthy person. Today I’ll talk about five challenges I face every day, and then tomorrow I’ll discuss more about some of the triumphs that have come from dealing with Cushing’s.
Challenge 1: “The Look”

This is probably the most socially challenging part of Cushing’s Disease for many of us. I have been stereotyped the “fat lady” or the “lazy fat lady” many times in my life. No matter where I go, people judge this book by its cover. Even in organizations or places where people profess to being courteous and kind at all times, I’ve missed out on opportunities because of being overweight or looking different.

Yes, I know there are indeed people who are lazy and happen to be fat out in the world. It has certainly been a blow to my self esteem when I am compared to these people blatantly and without cause based solely on my looks. Take the time to get to know people before you form an opinion. This form of criticism is really another form of bullying that has never truly gone away and I’ll share this here and now: You adults that do this are only teaching your children to be bullies, and it needs to stop. Stop the cycle of bullying, because it’s only getting worse.
Challenge 2: Chronic Infections

Cushing’s Disease has compromised my immune system terribly by reducing a kind of white blood cells in addition to messing with vitamin absorption. When I was first diagnosed with Cushing’s, my Vitamin D levels were almost too low to register on the blood tests. Things have been better now that I’ve had two surgeries and have started as many herbal treatments as possible, but I’m still prone to every bug I come across.

It’s really quite surprising how many times my son would bring home a virus from school and he would be fine, but I would end up sicker than a dog for weeks at a time. Going to church? It’s surprising how many people call a little sniffle “allergies” but then I would end up sick with bronchitis and on antibiotics for a month, which then would destroy all the natural balance in my body anyway.

I remember riding home from my second brain surgery wearing a mask to try and help protect the fresh wound in my nose from inhaling germs on a plane full of people. Oh the looks I received! People avoided me, treated me like a leper, and one lady even said to a flight attendant “Why is she allowed on this plane with a mask on?” It was quite comical to me to be smiling underneath that mask and thinking to myself “You’re the contagious ones!”

Out of respect for my friends and family, I’ve learned that saying no to visits or public events when I’m sick is important not only for me, but for other people. I would expect the same, but I know that most people wouldn’t understand — If you’re sick, stay home!

Challenge 3: Endurance

Have you ever found yourself waking up one morning, and knowing you have to get up to get things done, go to work, or meet a deadline — but realizing you don’t want to get out of bed. In my case, many times it’s the opposite, I want to get out of bed and have a wonderful day, but I physically and mentally can’t.

Because my sleep schedule was altered by my body’s hormones, I would find myself wide away from 9pm to 9am, without fail. My energy level would be higher at 3am than 3pm, and trying to accomplish my goals and to do things I loved to do was difficult. Combine that sleep schedule with the debilitating damage to my bones and muscles and I just couldn’t do the things I needed to do. Muscle wasting is a common problem with overdosing on steroids, and since my body was OD’ing me on purpose, well, it was difficult to get moving in the mornings, and difficult to climb stairs, carry groceries, even walk around the parking lot for exercise.

I love hiking, camping, walking hours on end through theme parks and at the beach. But my body just doesn’t cooperate. Sure, I’ve been told “Well lose weight and you can be normal again!” But that kind of ignorant comment makes no sense when you understand that my body won’t lose weight, my muscles are wasting, and my bones are brittle.

Challenge 4: The Roller Coaster Ride!

Cushing’s is the most drastic roller coaster ride I’ve ever been on! Physically and mentally I’ve been through the ringer. When my cortisol spikes, my emotions get out of control and are difficult to control. Little things, good or bad, go to an extreme in my head. But on good days, I can handle all of those normal things.

Physically, I can have bursts of energy, and feel amazing, but then it’s like a crash — I never know what days will be good and which ones will be bad, so I have to beg off and miss important things. Once I discovered the “Spoon Theory” it has been easier to share with my friends why I can’t do things simply in “I’m saving spoons” or “I ran out of spoons” terminology.

Challenge 5: Knowing Time Your Time is Short

Since 2008, I have lost five friends to Cushing’s Disease. I watched one friend in 2008 make it through her first brain surgery to gain a short remission, to having her entire pituitary gland removed, to slowly dying over three months from not having her hormones adjusted properly by inadequate medical care. She was gone too soon. I miss her dearly. I had already been diagnosed in September of 2007, and watching her journey made me bury my head in the sand and want to forget all about facing my disease. I miss her dearly, and think of her every day. Since my second surgery, I’ve outlived her medical treatment, and thank God every day I have a second chance to try and live a long healthy life.

After burying my head in the sand and not wanting to pursue a diagnosis, I ended up almost losing my left kidney and having emergency surgery, alone, one autumn afternoon. I had to be awake during the surgery and sobbed into the nurse’s arms as she tried to comfort me through the pain, but also the fear of what was happening to my body. I had to live with a tube sticking out of my kidney and urinate into a bag for over a month before I had to go back in for more surgery. Eight hours of surgery and six hospital days later, I had plenty of time to think.

I thought about my eight year old son, about how he would be alone and I would miss out on every life achievement if I didn’t listen to my doctor. I thought about wanting to leave an impact on this world and to overcome all the things that society called me for being “too fat” or “too lazy.” I realized I wanted to go down fighting and winning rather than giving in and letting people think the worst of me.

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Cushing’s Disease on Facebook

With every day, every step, and every event I get to enjoy, I thank God for the chance to leave the world a little better than I found it. Every cigar, every glass of whisky, every hug from a friend, every smile, every merit badge I see a Boy Scout learn, every blog post I get to write — I cherish them. You never know when each experience will be your last. In my case, I don’t expect to live past 45 as my body continues to fall apart. Knowing I have less than ten years to enjoy and help people, it certainly changes my perspective of the world.

Originally Posted 8th April 2012…….Read more blogs by JPH

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