Blog changes

Thanks to everyone who followed Training Because I Can! over the last nine years. This blog started with Addison's Disease, hypothyroidism and a crazy idea of doing an Ironman distance triathlon. My life has changed and so has this blog. I am using this blog strictly for Addison's Support topics from here on out. I hope to continue providing people with hints for living life well with adrenal insufficiency.

Friday, June 26, 2009

Why risk it? Another 100 in my future...

Once again, I'm going to quote my recent favorite book, Deep Survival by Laurence Gonzalez to explain how I feel about risk. To explain why I choose to take calculated risks in my daily life, why I continue to do ultrarunning races, run and ride alone in bear country and do things that most doctors think I can't do and shouldn't do because of my Addison's.

Perhaps this quote will get you to want to do things you've always wanted to do but were afraid to do. Your big goals are totally different than mine and just as valid, difficult to achieve and exciting to you no matter what they are. Make some plans, set some goals, do something that makes you feel alive.

The perfect adventure shouldn't be that much more hazardous in a real sense than ordinary life, for that invisible rope that holds us here can always break. We can live a life of bored caution and die of cancer. Better to take on the adventure, minimize the risks, get the information, and go forward in the knowledge that we've done everything we can.
No, some people would rather not see it, but the bull is there for all of us. Some of us choose to pass the cape in front of its horns. To live life is to risk it. And when you feel the rush of air and catch the stink of hot breath in your face, you enter the secret order of those who have seen their death close up. It makes us live that much more intensely. So intense is it for some that it seals their fate; once they've tasted it, they just can't stop. - Deep Survival, Laurence Gonzalez

Yes you can!

Thursday, June 25, 2009

Biking and bear protection

Dave didn't have any bear spray for his bike ride so he improvised. Only in Idaho!



Bear spray substitute!

Tuesday, June 23, 2009

BABY!! and other animals

Animal pictures gallore! What a beautiful baby horse! I feel like a proud mom. She was born Friday, June 19, 2009



3 day old filly




3 day old filly and I meet



Baby day 4 and her mom, Buffy




Buffy (mom) and filly day 4




Buffy and the 4 day old filly




Duck getting big! 6 weeks old



Turkeys turned out to a bigger pen


video
Dolly pouncing through the tall grass



Raising awareness for orphan diseases in Washington DC starting June 24th, 2009


Follow the 2009 VF Pedal Power Peloton - cool Google fly over! Starts June 24th, 2009

Follow the 2009 VF Pedal Power BLOG - info about the ride, training and soon, the trip to Washington DC

Power pedal ride to raise awareness of rare diseases - article in the Daily American newspaper


CYCLISTS TO RIDE FROM PITTSBURGH, PA TO WASHINGTON, DC TO CALL ATTENTION TO VASCULITIS AND OTHER RARE DISEASES [INCLUDING ADDISON'S DISEASE]

Riders to deliver letter signed by hundreds to U. S. Congress.

Fourteen bicyclists [INCLUDING HEATHER NAGY WHO HAS ADDISON'S DISEASE] will leave Pittsburgh on June 24 for a six-day ride to Washington, DC to raise awareness and encourage research for all types of vasculitis and other rare diseases.

The event, the “VF Power Pedal Ride for Rare Diseases,” is sponsored by the Vasculitis Foundation.

The team members are men and women from Pennsylvania, Ohio and Missouri.

The group will begin its 325-mile trip at Point State Park in downtown Pittsburgh, and follow the Great
Allegheny Passage Rail Trail and the C & O Canal Trail, stopping in five towns along the way.

Upon reaching Washington, the team will pedal the length of the National Mall to the steps of the U.S.
Capitol, where they will deliver a letter signed by hundreds of rare disease patients, caregivers and
medical professionals to a congressional representative on the U.S. Capitol steps.

Team leaders are Joyce Kullman, Executive Director of the Vasculitis Foundation; Ed Becker, Director
of the Polyarteritis Nodosa Research and Support Network; and Heather Nagy of the National Adrenal
Diseases Foundation. All belong to the Coalition of Patient Advocacy Groups funded by the National
Institutes of Health’s Office of Rare Diseases Research. The ORDR coordinates research into rare
diseases and disorders.

“By taking part in this initiative, I am hoping to bring attention to the Vasculitis Foundation,” says Ms.
Kullman. “Our organization serves thousands of patients who have one of the 15 vasculitic diseases.
However, it’s equally important to have legislators understand that the rare disease community is a
huge demographic.”

“By definition, a rare or ‘orphan’ disease affects fewer than 200,000 people in the United States,”
explains Heather Nagy. “While it may appear that not enough people would benefit from research as
to make it cost effective, the numbers tell a different story. There are more than 6,000 rare disorders,
and they affect the daily lives of 25 million Americans.” Research into rare disorders often leads to
cures for more common diseases. For example, statins, which have lowered the incidence of heart
disease around the globe, came about because of a tiny study into a rare disorder.

Ed Becker, one of the event coordinators, notes, “There is a real need to support rare disease patient
advocacy groups, and this seemed like a natural extension of taking a message to Washington DC.
Those of us on the team are fortunate that we are healthy enough to do this ride on behalf of all the
people who cannot because of their illness.”

The VF Power Pedal Team is accepting sponsorships from individuals or groups. All donations will
support education and awareness of the patient and medical community about vasculitis and other rare
diseases. Supporters should go to http://www.vasculitisfoundation.org/vfpowerpedal. A link on this page will allow rare disease patients, caregivers, and medical specialists to leave a message that will be delivered to Washington via the Power Pedal Biking Team. “We’re the messengers,” says Kullman. “However, we’re asking rare disease patients to be ‘the voice’.

We will put many of these comments into a letter that will be hand-delivered to the US Capitol. This
bike trip is all about the power of the individual connecting with the powerful lawmakers in
Washington DC.”

FACTS ABOUT VASCULITIS AND THE VF POWER PEDAL RIDE FOR RARE DISEASES
Vasculitis is an inflammation of the blood vessels, arteries, veins or capillaries. When such
inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing
that can progress to the point of blood vessel blockage.

A critical key to continuing rare disease research is the Office of Rare Diseases Research (ORDR),
which operates with a very limited yearly budget of 16 million dollars. The Vasculitis Foundation and
the VF Power Team believe that it is critical to let senators and representatives know that funding must
be increased. This ride provides its participants with a very visible way to accomplish that.
Members of the public wishing to sponsor the VF Power Team and submit a message for delivery by
the team are invited to visit the event web page at http://www.vasculitisfoundation.org/vfpowerpedal.
Organizations supporting the VF Power Pedal Ride for Rare Diseases include:
 National Urea Cycle Disorders Foundation
 Platelet Disorder Support Association
 National Adrenal Diseases Foundation
 National Institutes of Health Office of Rare Diseases Research
 The Polyarteritis Nodosa Research and Support Network
 Aplastic Anemia & MDS International Foundation
 CARES Foundation, Inc.
 Children's Liver Association for Support Services
 National Organization for Rare Disorders
 Churg Strauss Syndrome Association
 Vasculitis Foundation
The web page also features a blog on which members of the biking team share how they are preparing
for the event and why the cause is important to them. It will also allow visitors to follow the riders
while they are en route to Washington. Visit the blog at: http://vfpowerpedal.blogspot.com/

Monday, June 22, 2009

Big Horn pictures



I got a migraine last night, completely off my "migraine schedule". I have a feeling it's the start of a series of migraines. There's no evidence to support this theory. Ya know, I get migraines whether I run and mostly if I take days off. I guess I'd rather be active between the migraines than sit around with my butt on the couch watching TV.

My body feels remarkably not sore at all. The migraines have me completely stupid and exhausted. I'm wiped out and trying to rest a little.

Lots of pictures, as little text as possible. What a beautiful course!



Leaving Teton Valley





Interesting rock formations outside Cody, Wyoming




A thick herd of cattle outside of Cody, Wyoming



Me with my noticeable drop bags in downtown Sheridan, Wyoming





The start of the Big Horn 100




Mike E and I at the start, reminiscent of Pocatello 50




Looking down toward the Tongue River Canyon




An exceptionally nice, neat creek crossing. We had to jump or walk through most creek crossings




Need I say more?




Upper Sheep creek aid station. Some aid stations had to have llamas, horses and/or people with backpacks to selflessly haul things in for us. All of the people who helped were volunteers.





Blow down




Beautiful trail




Marie running down the Haul, we went all the way to the bottom of this canyon




Porcupine Ranger Station aid station




Me and Tom, not feeling too well



video
Short clip of the mud early in the day. Most of the mud was in miles 44-48 between about midnight and 2:30 am, in the dark. Lots of creek crossings. Shortly after this clip was taken, Marie's shoe came off in the mud. What a mess.

Sunday, June 21, 2009

DNFed at Big Horn

Oh well, it was a good attempt. I didn't manage to finish the race. Got to halfway and had to quit due to extreme nausea. Legs felt good and head was in the game, the guts wouldn't cooperate. I ended up on the medical cot for a few hours getting warmed up and had to get some oxygen. We got back to our motel room at 7 am.

I slept most of yesterday and all of last night.

Today I feel fine. My legs aren't sore but my shoulders are!

I think my quest to finish 100 miles is over. I don't think I have the desire to feel that kind of nausea on an elective basis. I'm not sure if the nausea was from the Addison's, my physical make up or for some other reason but it was not good.

Many thanks to all of you who sent positive vibes, nice messages and prayers! It made me smile to think of you all. Thanks to my husband Paul who did a lot of behind the scenes work to make this attempt possible.

Pictures to come when I get home.

Nancy I didn't finish but I sure did want to!!!!!!!!! XXXOOO to you!!!!!