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, May 29, 2009

Help raise awareness for rare diseases (like Addison's)

An email and press release from amazing Addison's woman Heather!

Hello, Friends and Family!

Late next month, Dave and I will participate in the VF Power Pedal for Rare Diseases – a 325-mile bike ride from Pittsburgh to Washington DC.  The purpose of the ride is to raise awareness of the need for increased federal funding for rare disease research. 

Now, I’m not asking for a donation. 

What I need is for you to do is to write a brief statement about your personal experience with rare diseases – as a patient, family member, friend, caregiver, or medical professional – so that we can take these comments to Washington.  We will deliver all of the letters, emails, petitions, and other messages to Members of Congress on the steps of the Capitol on June 29.  Your message does not need to be long.  A few sentences will suffice, although you may write as much as you wish.  We just want Congress to know that rare disease research funding IS important!

You may learn more about the event, and click on a link to add your comments, at http://www.vasculitisfoundation.org/vfpowerpedal.  If you wish, you may also make a donation to the Vasculitis Foundation, the group that is sponsoring the ride, but that is not required!  Your words are far more important than your dollars. 

There is also info about the ride in the attached press release, which we have sent to local media along our route, as well as the media in the hometowns of our riders. 

 I appreciate your support!

Thank you,

Heather

 p.s. – If you’re not sure what to say, or need more information about the 25 million Americans whose daily lives are affected by rare diseases, I’ll be happy to help out!  Just let me know…

FOR IMMEDIATE RELEASE
May 18, 2009
Contact: Joyce A. Kullman, Executive Director of the Vasculitis Foundation
Phone/Fax: 816-436-8211
Email: jakullman@vasculitisfoundation.org
VF Power Pedal Ride for Rare Diseases Web Site: http://www.vasculitisfoundation.org/vfpowerpedal
  
CYCLISTS TO RIDE FROM PITTSBURGH, PA TO WASHINGTON, DC TO CALL ATTENTION TO VASCULITIS AND OTHER RARE DISEASES
Riders to deliver letter signed by hundreds to U. S. Congress
Fourteen bicyclists 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 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. 
  • Organizations supporting the VF Pedal Power ride include:
(a)    National Urea Cycle Disorders Foundation
(b)   Platelet Disorder Support Association
(c)    National Adrenal Diseases Foundation
(d)   National Institute of Health  Office of Rare Diseases Research
(e)    Polyarteritis Nodosa Research and Support Network
(f)    Aplastic Anemia & MDS International Foundation
(g)    CARES Foundation, Inc.
(h)   Children's Liver Association for Support Services
(i)     Vasculitis Foundation
(j)     National Organization for Rare Disorders
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.  
  

Thursday, May 28, 2009

Why it might be a good idea to do your own medical research...


I'm still reading Deep Survival, Who Lives, Who Dies and Why by Laurence Gonzales and came across the passage below.  It made me think we might be our own best researcher and advocate because doctors are supposed to be experts and we know so little.

We like to think that education and experience make us more competent, more capable.  But it seems that the opposite is sometimes true..."In the beginner's mind there are many possibilities," and Zen master Shunryu Suzuki.   "In the expert's mind there are few."

Don't hesitate to follow your instincts with regard to your health.  Research all possibilities no matter how obscure.  You deserve to feel well and you can be the driving factor in your treatment and wellness.

Tuesday, May 26, 2009

Chicks on video



Human chick, Joanne.  Video of her below.
Big Holes, Idaho


Recovery from this weekend is going well although I might have tapered my hydrocortisone a little too fast.  It's easy to fix that, I'll just take a little more HC right now since I'm thinking about it.  Soreness is nearly gone and bike riding didn't hurt a bit.  It's finally mountain bike season in Idaho!  With as much as I've been running lately, it's hard to believe that mountain biking is my first love.  I'm going to do much more of both this summer.

Results are in from the race and I came in very near the end.  However, I have to say that was my most challenging race that I've ever done and the thought of it brings a big smile to my face.  I finished.  Some didn't, some went really fast.  Finishing a race like that lets me know that I can accomplish much, much more!  Watch out world!

Big turkey chick



Duckies are getting HUGE (picture is blurry, hard to hold chick and take pic with left hand)



video
Duckies



video
Turkey chicks pecking at my ring and hand.  I'd better be careful because it's going to hurt pretty soon



video
Human chick!

Monday, May 25, 2009

Be a survivor

For the second time, I'm reading Deep Survival, Who Lives, Who Dies and Why by Laurence Gonzales.  As I read the paragraph below on pages 86 - 87 of the paperback edition, I felt somehow justified about my bad Emergency Room behavior.

Psychologists who study survival say that people who are rule followers don't do as well as those who are of independent mind and spirit.  When a patient is told that he has six months to live, he has two choices:  to accept the news and die, or to rebel and live.  People who survive cancer in the face of such a diagnosis are notorious.  The medical staff observes that they are "bad patients," unruly, troublesome.  They don't follow directions.  They question everything.  They're annoying.  They're survivors.  The Tao Te Ching says:  

The rigid person is a disciple of death;

The soft, supple, and delicate are lovers of life.


Please strive to be an annoying, unruly and troublesome patient.  Question everything.  
Be a survivor.

Sunday, May 24, 2009

Pocatello 50 miler






A big thank you to everyone who thought good thoughts for me yesterday!  I appreciate it!

Good news, I finished the Pocatello 50 without crying.  I accomplished two goals that I set out to accomplish.  The Pocatello 50 mile race course was actually 51.8 miles and 13,700 feet of vertical elevation gain and I got a few extra tenths at about mile 39 because we thought we were lost and back tracked.  The race was run very, very well.  The course was very hard and beautiful.

As far as Addison's goes, I gave the race director my usual letter about Addison's and my emergency injection kit.  Well the race director did an awesome job making me comfortable being on this rural, difficult course.  All of the aid station people knew about me and when I checked in, one of the aid station people would come over, put a hand on my shoulder, look me in the eye and ask me how I was doing.  At the end of the race, both race directors came up to me and shook my hand.  It was so nice to know that anyone who was working on the race would know to give me a shot if I got hurt or became unresponsive for any reason.

Meds:  
  • 25 mg/day usual
  • 30 mg/day on Wednesday
  • 35 mg/ day on Thursday and Friday
  • Race day
  • 10 mg on waking
  • 10 mg before the race
  • 5 -10 mg/hour during the race for 14 hours


Mike E, me and Paul moments before the start



Beautiful trail and sunrise



Incredibly steep and there was NO trail.  It took about 45 minutes to go one mile



video
Damn, I'm so graceful.  Watch this, it's funny



Thinking we're off trail at about mile 39, we're all in great spirits!  Me, Jeff, Olga and Larry



video
51.8 MILES FINISHED!