Saturday, March 24, 2012

Remembering Annie and recognizing undiagnosed adrenal insufficiency

Copied from http://annaleesullivan.blogspot.com/ with permission from Jean Sullivan.

Annie Sullivan

Annalee Grace Sullivan was born on April 7, 2003 and lived the life of a playful, spiritually sensitive, musical child until she was 3 1/2 years old. On January 21, 2007 she suffered an hypoxic brain injury from a seizure caused by undiagnosed Addison's Disease. In spite--or because--of her physical and cognitive limitations, Annie was a blessing to all who knew her. She died on March 25, 2011.

Remembering Annie on March 25th

I got a card in the mail a couple of days ago from my niece, Lorraine, reminding me that she remembers what's coming up next Sunday: Annie's first birthday in heaven. Hmm,first birthday in heaven sounds so much nicer than the first anniversary of her death. I'll stick with that one.

As I've been thinking about what our family should do that day, I came up with 8 ways to honor Annie's memory. Then I had another idea: if you knew Annie and felt inclined, youcan do one of these things, too!

1. Wear something pink.
2. Plant something pink.
3. Buy a pink balloon, write a message to Annie and let it go up to heaven where she can read it.
4. Make pink cupcakes.
5. Buy Heaven, God's Promise for Me, and donate it to the kid's ministry of your church.
6. Donate any Dr. Seuss book, or Brown Bear, Brown Bear to your local elementary school.
7. For you big spenders, donate an IPad to your local school's special ed program. Nonverbal kids like Annie need easy ways to communicate, and IPads make this happen.
8. Hug your kids and thank God every day you get to enjoy them this side of heaven.

And for those of you who have lost loved ones, post a comment about how you honor their memory on anniversary days. Then maybe we'll snag your idea, too.

Jean
Addison's Disease, a disease of the adrenal glands that when undiagnosed, can cause the following symptoms:
  • fatigue
  • darkening of the skin
  • loss of appetite
  • gradual weight loss
  • nausea and vomiting
  • salt cravings
  • low blood pressure which leads to light headedness
  • An ACTH stimulation test is needed to diagnose Addison's Disease (adrenal insufficiency)
  • Undiagnosed and untreated adrenal insufficiency can lead to death in 10% of cases

  • Adrenal Crisis in Emergency Medicine 

    • Author: Kevin M Klauer, DO, FACEP; Chief Editor: Erik D Schraga, MD   more...
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Thursday, March 22, 2012

Big girl panties are on...The Barkley Marathons

Big girl panties so big that I am wearing suspenders to hold them up

I'm not exactly sure where to begin this story.  I guess with explaining a little bit about the Barkley Marathons.  The Barkley Marathons is a race that goes through Frozen Head State Park in Tennessee.  Supposedly the loop are about 20 miles with about 11,000 vertical gain per loop.  The Barkley was begun in 1986 by Gary Cantrell also known as lazarus lake.  The field is limited to 35 or so participants who, in recent years, have had to apply and send in an essay.  The application is comprised of questions like, "How many loops do you think you'll complete?"  (ANSWER:  This is the Barkley, no one knows what the results will be) and "How many Frenchmen does it take to screw in a light bulb?" (ANSWER:  you cannot fit frenchmen in a light bulb).

The race is quirky, the start begins one hour after the conch shell is blown when laz lights a cigarette.  The terrain difficult with some climbs and descents of 1,500 vertical feet in less than a mile.  No aid, no pacers, wild hogs, ticks and no trail markings. Check points consist of finding 10 or so hidden books and tearing out the page that corresponds to your race number.  All pages from each check point must be presented when you get to the end of the loop which is the yellow gate at the campground.

My friend Lora applied and was accepted to this race in 2009.  I was jealous.  I wanted to do it too.

Fast forward to the end of 2010.  I applied at the appointed time.  People accepted to the race do not have their names disclosed unless they do it themselves.  I was #9 on the wait list at the beginning of January.  I was accepted to the race and told to put my big girl panties on a week or so ago.  I am going, big girl panties on.  I am doing it.  There's no hope that I will complete the 100 miler or even the Fun Run of 60 miles.  None.  I will be lucky to complete one loop despite sending two long weekends out there running on the trails.  Often even accomplished runners only complete one loop.  I hope to complete one loop without crying.  Only 10 men have finished the 100 mile race since 1986.  I think that the statistics of the winners are that they are overwhelmingly engineers with doctoral degrees and speed records on the long trails (Pacific Crest, John Muir).  I don't belong in this race but I'm very excited to be a part of it.  I just hope I don't embarrass myself too badly.

Now I am reviewing maps (they will not help much!), organizing gear, packing camping things for the extended camping trip and keeping my fingers crossed.  I will post pictures from my weekends at Frozen Head in another post.  As far as Addison's stuff goes, I am completely and utterly on my own.

It's a huge honor to be allowed to participate in this race and become part of the Barkley lore.  It's going to be amazing to toe the line with so many accomplished ultra runners from the US and other countries, hear their stories and chat.

For more information about The Barkley:






There's also a movie being made about the Barkley this year.  Tim and Annika are trying to obtain funding via Kickstarter.  Check out their video!


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