Do you have Adrenal Disease?

The adrenals are such tiny little things and so is the pituitary gland….so why are they such a BIG problem?  I often joke and say that my pituitary went on vacation and never came back, so my adrenals don’t know what to do. 

I was diagnosed with Isolated ACTH deficiency in 2001, and haven’t been well since.  ACTH is a hormone made by the pituitary gland that signals the adrenals to produce cortisol.  But, like I said my pituitary gland is on vacation.  In my case, there is nothing that points to why or how I developed this disease. 

I am always interested in how other people were diagnosed and how others cope with their condition.  Although my doctor is well-informed, and treats a handful of patients with some type of adrenal disease, I understand I am lucky.  I have heard horror stories from other people about their doctors who just don’t get it.  So, what can you do to make sure YOU understand what is going on with your body? 

  • Support groups and health bloggers are a great source for information and understanding
  • Understand your treatment and meds with the help of your physician and your pharmacist (I have found pharmacists to be very willing to talk and answer questions that some doctors don’t want to take the time to do)
  • Ask Tell your doctor what you want, and don’t take no for an answer, I regularly ask to have my DHEA level checked because I want to know.  She doesn’t necessarily care about it. 
  • Learn to listen to your body, it often will tell you what it wants/needs
  • Be prepared for anything.  Something you might think is small or insignificant can land you in the ER
  • Always keep a list of your medications with you, if you are ill it is hard to remember everything
  • Educate your family so they can advocate for you in case you can’t
  • If needed, make sure you have an emergency injection available to you at all times
  • Wear a medical alert bracelet or some type of ID that will alert emergency personnel of your condition

If you have important hints to share, please do.  Below, I am sharing some of the most important links and interesting people that I have found to learn more about various adrenal diseases.

Addison Village – Here you will find a wonderful group of people who are knowledgable and willing to share all their ups and downs with anyone who asks.  I learned more from this group than any other website

Finding Lana – A great blog written by a woman with Addison’s Disease,  lots of information on her blog!

Simply Suzanna -Suzanna always has something cheerful to say, and her blog is pretty to look at too!

Hypogal – Lisa, who has Sheehan’s Syndrome shares her story with her readers on this wonderful blog.

Addison Disease Facts – A Blog written by my friend Jo, who also helps people through her website Addison Village (mentioned above)

This has nothing to do with Addison’s Disease….I just like it!

http://www.youtube.com/watch?v=qnUZ-Uw05kg&feature=related

 

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Ashley Judd – Puffy Face – and Steroids

Article from O Magazine

 
 
 
Athelia Woolley

At 26, Athelia Woolley spent her days working in a Stanford University lab, gluing electrodes to subjects’ scalps. Her research, which sought to map the location where forgiveness occurs in the brain, involved prompting subjects to imagine forgiving someone and then noting which electrodes lit up. Woolley had hoped to earn a PhD in neuroscience, but abandoned the pursuit in 2006. Three years earlier, she’d been diagnosed with Addison’s disease—a disorder that interferes with the production of adrenal hormones—and her symptoms were worsening. “I constantly felt disoriented, like I’d been woken up at 3 A.M.,” she says. When doctors told Woolley she required intense treatment, she moved in with her parents in Salt Lake City.

“I needed a project to keep me sane,” says Woolley, who had loved clothes since childhood, and had even written “fashion designer” as her desired profession on an eighth-grade career-matching exam (the results said she was best suited to science). Remembering this, she ordered a copy of The Fashion Designer Survival Guide. Reading the book gave her a rush. “It all suddenly seemed doable,” Woolley says. Soon she secured a loan and found a manufacturer. Her design vision was simple: dresses with vintage cuts (“They flatter the waist, which is great for shorter people like me”) made of fabric with some stretch.

In December 2006, Woolley and a partner launched Shabby Apple, with ten work-to-weekend dresses, like a gray T-shirt dress with puffed shoulders and a ruched-sleeve mock-turtleneck dress in green—all priced below $100. Her health beginning to stabilize, she filled orders from her parents’ house.

Since then Shabby Apple has relocated to a warehouse nearby; in 2011 the line generated approximately $3 million in sales. Woolley runs the company remotely (she lives with her husband and new baby in New York), phoning or Skyping into brainstorming sessions with her team. This creative collaboration is something Woolley says she never had in the lab: “It’s the part of my job I enjoy most. It’s like we’re solving a big puzzle.”—Jessica Sylvester

Read more: http://www.oprah.com/money/How-Real-Women-Discovered-Their-Dream-Careers/2#ixzz1rCVS4v1X

Spotlight Article

Connie Roberts, a health blogger I have been reading for a long time, gave me the opportunity to be featured on her blog in her spotlight interview section.  Her blog My Chronic Life, has information for anyone dealing with chronic illness.  Connie deals with Ulcerative Colitis, Myasthinia Gravis, Anemia, Mitral Valve prolapse, Sjogren’s Syndrome and Rhuematoid Arthritis. Her blog offers suggestions for everyone and links to other sites that can help.  Check her out.

I was honored that Connie thought my story was interesting enough to share with all of her readers.  To read my story go to: http://mychroniclife.com/2012/03/29/maureen-kaech-mo-advocate-for-addisons-disease/

Thank You Connie!