Even as a little child Mindy loved school and made friends easily. As an only child some people claimed she was spoiled rotten. Later in life, Mindy agreed.
In high school, she became an honor student and participated in track and cheer leading, with the purple and gold Eagles. Mindy loved people, and with her heart focused on others, she had a gift of making them feel special. Boys pursued the beautiful girl with the sparkling personality. She went to the prom and looked beautiful in her baby-pink taffeta dress, size four, with the pink and white corsage pinned on her chest. Confident, with an upturned face, she put her hand on the arm of her boy friend, bounced on her toes and glowed. Her eyes sparkled as her mom snapped pictures of the happy couple.
Eighteen years old, graduation behind her, and a future filled with hope. She loved to read and study and was a member of Goodreads. She talked often of becoming a doctor to help others.
Life was good. She pre-pared for college and hoped to pursue a career as a psychiatrist. She looked forward to many things, marriage, buying a log home in the country and having children. Family gatherings with aunts, uncles and cousins topped her list of favorite things to do. She was especially close with her Aunt Stacy. Her whole life lay ahead of her, or so she thought. There was no warning of the tragedy she would be facing.
The ink had barely dried on her diploma when she woke up and everything changed. Something was wrong. She didn’t feel right. Then she started gaining weight. That first month she gained 100 pounds. The next month, fifty pounds. She had always tried to eat healthy and keep up with her exercise, so she couldn’t blame the gain on Hostess Twinkies or hot fudge sundaes. She endured several tests, then sat in the doctor’s office and waited for the results. Her doctor, a woman with a distant and empty stare, walked into the room with a folder under her arm and crushed Mindy’s world with her words.
“You have a rare disease,” she said, “something that only one in a million people get. You have Cushing’s disease.”
“I’ve never even heard of that,” she said, “what is it?”
“Cushing’s Disease is an endocrine (hormonal) disorder caused by overproduction of the hormone cortisol. When it functions normally, cortisol helps the body respond to stress and change. It also helps control the amount of water in the body. It changes the body’s response to inflammation and it stimulates the liver to raise blood sugar. A hormone released from the pituitary gland in your brain is not working like it should. Your weight gain is from water retention.”
“But I’m so young.”
“Yes, you’re a little young. Cushing’s Disease most commonly affects adults aged 20 to 50, and is more prevalent in females. It can also be caused by excessive use of cortisol or other steroid hormones. When too much cortisol is produced in the adrenal glands, or an excess amount is taken as a treatment for other diseases, this affects all of the tissues and organs in the body. In this situation, the pituitary gland overproduces its signaling hormone due to a tumor or inflammation. Treatment includes removal of the pituitary tumor, removal of the adrenal glands and hormone therapy.”
Mindy held her palm up to stop the doctor from dumping on more worry. Her voice choked with tears as she let out an uncontrollable whimper. “So is it treatable?”
“Yes,” she said, as she looked down at the floor. “With brain surgery. Follow-up care is important to ensure a tumor will not return.”
“I need brain surgery?”
“I’m sorry,” she said as she put a hand on her shoulder. “But if left untreated, this condition can be fatal.”
Mindy couldn’t grasp the reality of it all. Thoughts of someone cutting into her brain terrified her. Not to mention the fact that she had no insurance and no money. But love and support from family came through for her. A family member promised to pay whatever the cost. Appointments were set up and Mindy tried to deal with the upcoming surgery she had to face. In fact, she had two surgeries, three days apart.
With God’s help she made it safely through both surgeries.
She hoped things would improve, but she never felt cured and never really recovered as she should have. She and her mom sought a second opinion out of state. The doctor told her the Cushing’s Disease had just slowed down. He wanted to treat her, but unfortunately her insurance wasn’t accepted. She came back to Michigan to be with family. She never pursued another doctor, in the hopes that she would heal and be back to her old self. That never happened. She knew deep down that the Cushing’s was still there, hiding in the background, just resting and not making much of a fuss, ready to take over her life again.
Then, at age twenty, Mindy felt like something was wrong. She went back to the doctor for more tests. She was shocked to discover that she was pregnant. She never thought it was possible, since she had not had a period for over five years. The doctor told her it would be a high risk pregnancy, but she risked her own life and safely delivered the little boy with baby blue eyes, long lashes and brown, naturally curly hair. They named him Landon. The little boy brought joy into the lives of his parents and grandparents.
Mindy loved pets, and she wanted her little boy to have a puppy. She welcomed many strays into her country home. If anyone refused to deal with their own pet, they dropped it off at Mindy’s. Her place was known as the one where everyone thought their pet would find a good home. She needed help to care for the animals, she hadn’t been able to lose the weight and lived on pain medication which made her dizzy.
But again, she didn’t want to face it, so she put it aside. Inevitably, she couldn’t ignore it when dreaded symptoms of Cushing’s disease returned when she was twenty-three. and included upper body obesity. Fat collected between her shoulders, her face rounded out and turned red with acne and purple marks on her skin. She had to deal with excess body hair. She became weak, extremely tired, and severely depressed.
She connected on the Internet with a support group of others who had the same rare disease. She made some wonderful friends who understood what it meant for a disease to take over your body until you were no longer in control.
Her Aunt Stacy invited her to an all-you-can eat buffet. “Oh, I haven’t been out to eat in so long,” Mindy said, with a faraway longing in her eyes. “I really miss it, but I hate the way I look.”
“You’ll be fine,” Stacy said and convinced her it would be good. “Come on, I’ll push you in your wheelchair.” Off they went to Ponderosa. Once inside, their first stop was the restroom. A little girl stared and whispered, “Mama, that lady is fat.”
The words hurt, but Mindy understood that children are honest and the little girl wasn’t trying to be mean. She finished drying her hands and thought of all the tempting food waiting just outside the door. She hadn’t let herself indulge in such a variety of choices for many years. Stacy pushed her in the wheelchair and together they headed for the buffet. They tried to ignore the stares of others who did not understand, until a woman looked her way with a down-turned mouth and shook her head. “Yeah,” she muttered, “like she needs a buffet.”
Mindy’s hearty appetite crumbled. It couldn’t survive the stinging words and the lump in her throat. With wet eyes and cheeks that burned, she glanced up at Stacy and whispered, “Let’s get out of here.” Stacy felt her pain and they left.
After several years of fighting and being seen by many different doctors, Mindy made one last desperate plea and wrote a letter to a new doctor.
Hello. I’m writing to you in regards of possibly getting some desperately needed help. This past year Cushing’s has come full force. First, my step-dad found me unresponsive and foaming at the mouth on my bedroom floor, barely alive. The nurse even said that since I was depressed, I probably tried committing suicide and overdosed on pills. That was not the case. Then I had major heart issues. I have to carry nitroglycerin at all times and also have oxygen. During one month I literally gained another 100 lbs. I retained so much water that my stomach actually dripped water through its pores. The doctors wanted me to have a weight loss surgery, which I didn’t want to have until the Cushing’s was taken care of, once and for all.
The doctor said it’s life threatening now and that it’s very important that I find someone who is an expert in Cushing’s and soon. I’ve never been scared to die and I’ve always described the pain that I go through on a daily basis as though I’m dying on the inside but waiting to die on the outside. I’m afraid that my body is finally starting to give up and I’m not ready. I have a 4-year-old son who needs me. I just can’t give up.
I’m currently unable to find an MRI in the state of Michigan that is large enough for me. I’m only 5’3” but I weigh over 415 pounds. My chest is too large to allow me to fit into an MRI both opened and closed. Please help me. I want to see my son grow up and make something of himself. He deserves to have a mom who isn’t sick all the time and continues to get worse. I’m scared to death that he might find me dead, and that is definitely not fair to him. This disease doesn’t just affect me, but it also affects everyone around me. I’ve been sick for about half of my life and I’m ready to be able to live again and finally be able to heal and move on. It’s to the point that I’m pretty much bed-ridden. So please help me. I’m truly desperate.
Her letter received an answer. “We will do our best to help you, but it may take a few weeks to get you scheduled. It is also extremely important that we know your current laboratory results. Would you contact your doctors and ask them to send me your laboratory data, and possibly a letter of referral? Also, if you would give me permission to contact your doctor, then we can move forward.
While waiting to see the new doctor Mindy continued to gain weight and reached 450 pounds. She could barely walk, so she spent most of her time at home. She couldn’t even bathe herself. Unless we’ve ever been forced to endure the humiliation of having someone else take over our most private duties, we couldn’t understand.
Her last desperate plea for help came too late. At twenty-five, just seven years after her diagnosis, Mindy passed away at her home. Yes, Mindy was one in a million who suffered when the horrible disease took over her body. Mindy fought hard and long with a disease that she couldn’t control. But, unfortunately it was a fight that she could not win. Mindy was a beautiful soul. Cushing’s Disease stole her life.
To watch a video of Mindy’s life CLICK HERE.