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MaryO – Giving Thanks for Naps

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Adapted from this post: http://www.maryo.co/giving-thanks-day-6-october-23-2017/

 

 

Today I am thankful for naps, even longer than those on the chart above.  Ever since my Cushing’s days in the early 1980’s, I’ve needed long daily naps – like 3 hours each – to get through the day.

My endo says I’d have more energy if I took more Cortef, but when I do, I gain more weight.  Of course, I *might” have more energy to work off the weight.

<sigh>

So, I nap and I’m very thankful that I can arrange my life to accommodate my long naps.

I’m also thankful that

 

 

 

 

Right diagnoses, drugs help woman return to normal life

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You could almost say things have returned to normal for Patricia Kleinhoffer in her family’s home, if there was a such thing.

What with living in a house with her husband, mother, brother, and four of her five non-biological children, things tend to get a little hectic, Patricia said.

“There’s no such thing as normal in this household,” she said.

But that’s just fine with Patricia, who welcomes the chance to spend more time with her family — that is, while she’s not working on her master’s degree.

Gone is the need for a nap every few hours; gone are the debilitating migraines; gone are the anxiety attacks that make it difficult for her to leave her home.

Those symptoms, a result of the Cushing’s syndrome she was officially diagnosed with in 2009, have largely subsided. Since she began taking mifepristone, which became Food and Drug Administration-approved in 2012, she also has lost almost 100 pounds and has seen a drop in blood pressure.

“I feel like a person again,” she said.

Cushing’s is a disease in which patients produce too much cortisol, a steroid hormone. It can produce tumors, diabetes, infections and other symptoms if left untreated and can even be fatal.

Patricia also had tumors, though hers were unrelated to her Cushing’s.

The medication, sold under the brand name Korlym, is a cortisol receptor antagonist, said Dr. M. Tufail Ijaz, an endocronologist at Genesis HealthCare System in Zanesville. Though it doesn’t cure patients like Patricia of Cushing’s, as they still produce cortisol, it does prevent the cortisol from taking effect.

Endocrinologist finds fulfillment in local practice

Ijaz, Zanesville’s only endocronologist, has five patients, including Patricia, currently taking the medication. Just hundreds are taking it across the country, he estimated.

On a recent weekday evening, Patricia sits on her couch surrounded by much of her family.

Though she and her husband Chris have never been able to have their own children, they’ve taken custody of five, four of whom are relatives from Patricia’s side of the family. All of them have some sort of developmental disability, she said.

At 5 p.m. on this day, the house is bustling, as four of the five kids still live there.

It’s moments such as these that Patricia said she’s glad to have back.

Not too long ago, her Cushing’s was exhausting her daily. She could barely stay awake more than two hours at a time, her memory was poor, and her weight made it difficult to even move around. Perhaps the most frustrating aspect, Patricia said, was seeing the toll it took on her children, but especially Chris, who became the main caretaker for the children.

“When you’re like that and you’re in that position, you feel useless,” she said. “It was hard for me to watch the effects it had on my family.”

Many of the symptoms started appearing long before her diagnosis, she said. Though she’s now 47, she remembers seeing signs of Cushing’s as early as her 20s. One of the first things she remembers noticing was a bump on the back of her neck, which she described as a buffalo hump.

But in the years to come, the depression, weight gain and diabetes began.

Her condition left her doctors and family searching for answers.

“We didn’t have a clue what was going on inside,” Chris said. “She was eating like a bird and she was gaining weight.”

Many of Cushing’s symptoms mimic other diseases, making it difficult to diagnose. Though she was seeing specialists in Columbus, she was never tested for Cushing’s.

“You can’t blame a lot of people for missing that diagnosis because it comes in stages,” she said.

After working for nine years as a staff assistant in the Genesis radiology department, she quit her job as her mental condition worsened. After she had her first brain surgery in 2008 to remove a tumor, she took a break from undergraduate school at Ohio University-Zanesville, as a traditional class setting became too much to handle.

Then in 2009, Ijaz opened a practice in Zanesville, and Patricia signed up for an appointment. The first thing Ijaz asked her was whether she had ever been tested for Cushing’s.

After tests came back positive, she had another brain surgery, underwent radiation treatment, and took several medications. In the meantime, Ijaz had learned of a new medication awaiting FDA approval: mifrepristone.

“We were waiting for it, waiting for her specifically,” Ijaz said. “When it came (in 2012), we started her.”

Patricia got her bachelor’s degree in 2013. She’s now taking online classes at OU-Z to get her master’s degree in applied behavioral analysis. She said she hopes to be back to work within a year, this time with the goal of working with at-risk youths and adults.

Throughout her ordeal, Patricia has maintained a sense of humor. As she sits in her home, surrounded by family, she deadpans about her weight gain and other symptoms.

She downplays her trials with not only her sense of humor but also her humility. Though she said she’s typically a private person, she wants to be an advocate for others going through something similar.

“People look at it like it’s some amazing thing and it’s not,” she said. “It’s just living.”

elagatta@zanesvilletimesrecorder.com

From http://www.zanesvilletimesrecorder.com/story/news/local/2015/05/30/right-diagnoses-drugs-help-woman-return-normal-life/28224447/

 

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