Addison's Support: The Website!

In addition to this blog, I have a website that was VERY unupdated. Yesterday, I did a little revising and updating and it's ready for you too look at!

I'm looking for Addison's Diagnosis stories. If you have one you want to share, email it to me at contact@addisonssupport.com

Constructive criticism always welcome.

My challenge to you. 50 on April 19, 2008 and 100 on August 31, 2008

Here's the deal.

I am running (and walking!) a 50 mile trail race on April 19, 2008 in Fruita, Colorado. It's called the Desert RATS race (Race Across The Sand). My hope is to finish alive. Better yet, I would love to finish it faster than my previous 50 mile trail race (12 hours 38 minutes). On August 31 - September 1, 2008, I will do a 100 mile trail race (Grand Teton Races).

My challenge to you is: What can/will you do 50 of on April 19, 2008? 50 steps, 50 words, 50 knitting stitches, 50 minutes of volunteering, 50 photographs, 50 minutes of walking, 50 resolutions, $50 to your favorite charity, you get the picture, 50 of something. Please email me (contact@addisonssupport.com) and let me know what you're willing to do 50 of! Please let me know what you'll do and if I can post your initials with your goal(s).

What can/will you do 100 of on August 31, 2008?

SET SOME GOALS AND JOIN ME (IN YOUR OWN WAY) ON APRIL 19TH AND AUGUST 31.

Thanks to Colleen for this suggestion! :)

Eddington Canyon run with Allison

Eddington Canyon is behind the Alta, Wyoming Golf Course

Allison always having fun!

Dusty hanging out

A snow mobile track through the woods

Allison going up hill

A moose pee spot, it's over a foot deep!!

From a run the other day (Spring Creek), very funny!

Running on the trail in the snow

13 second video of Allison and I on Spring Creek trail. We're dorks.

Study: evidence that current replacement regimens fail to restore health-related subjective health status fully in patients w/adrenal insufficiency

Interesting study. Here's the conclusion by the author: Patients with AI on current standard replacement suffer from significantly impaired health-related subjective health status, irrespective of origin of disease or concomitant disease. Future studies will have to assess whether more physiological glucocorticoid replacement strategies in AI will ameliorate these impairments.

Your doctor could be suggesting a less than optimal HC replacement schedule for you. DO YOUR RESEARCH. PRINT INFORMATION OFF. QUESTION YOUR DOCTOR!

1: J Clin Endocrinol Metab. 2007 Oct;92(10):3912-22.

Epub 2007 Aug 7.

Impaired subjective health status in 256 patients with adrenal insufficiency on standard therapy based on cross-sectional analysis.

Hahner S, Loeffler M, Fassnacht M, Weismann D, Koschker AC, Quinkler M, Decker O, Arlt W, Allolio B.

Endocrinology and Diabetes Unit, Department of Medicine I, University of Wuerzburg, Josef-Schneider-Strasse 2, D-97080 Wuerzburg, Germany.

BACKGROUND: There is mounting evidence that current replacement regimens fail to restore health-related subjective health status fully in patients with adrenal insufficiency (AI). Here we evaluated the subjective health status in primary and secondary AI and the effect of concomitant disease. METHODS: In a cross-sectional study, all AI patients registered with the University Hospital Wuerzburg (n = 148) or with the German Self-Help Network (n = 200) were contacted by mail. Underlying diagnoses and comorbidities were verified by review of medical records. Patients were asked to complete three validated self-assessment questionnaires [Short Form 36 (SF-36), Giessen Complaint List (GBB-24), Hospital Anxiety and Depression Scale (HADS)]. Results were compared to sex- and age-matched controls drawn from the questionnaire-specific reference cohorts. RESULTS: We identified 348 patients, and 256 agreed to participate. Completed questionnaire sets were available from 210 patients [primary AI (n = 132), secondary AI (n = 78)]. Seven of eight SF-36 dimensions, all five GBB-24 scales, and the HADS anxiety score reflected significant impairment of subjective health status in both AI cohorts (all P < style="font-weight: bold;">Patients with AI on current standard replacement suffer from significantly impaired health-related subjective health status, irrespective of origin of disease or concomitant disease. Future studies will have to assess whether more physiological glucocorticoid replacement strategies in AI will ameliorate these impairments.

PMID: 17684047 [PubMed - indexed for MEDLINE]

Sunday long run

Sunday's run was a great one. I was by myself, the sun was shining brightly and the air was cold. I was out for 2+ hours enjoying winter. I was out a little longer than expected and the "rescue party" was sent out for me. I was fine!

Allison and I did the same run 3 years ago that I did on Sunday (and then some). The seven miles we did was a huge deal. As a matter of fact, I think I was so nervous about the run 3 years ago that I lost sleep over it.

These are the cleats I put on my shoes. I would recommend them to anyone who has to maneuver on ice or hard packed snow for any reason, not just running. They are easy to put on, easy to remove, they also don't feel lumpy through your shoes and the spikes do not wear down that I can see. They are called Ultra Grips and can be purchased for $8.00 at this website.

The view to the North toward Driggs. Lisa, I took this one for you!

The view to the South toward Victor. The mountains you see are the Palisades.

The pointy, gorgeous mountain you can see in the background is the Grand Teton. What you see in the foreground is crappy trash dumped by an inconsiderate person. I stuffed the bottles in the snow in hopes that someone would pick them up. Please don't drop trash on the ground, ESPECIALLY CIGARETTE BUTTS. I don't know how people can litter in such a beautiful place.

Yum, cows!

Where is the bike path? Under 3 feet of snow!



Here's the bike path, being used as a snowmobile trail right now and for months to come.

Moose poop or Milk Duds?

Teton Creek and animal tracks.

A picture is worth a thousand words! Grand Teton (center) and Teewinot (left).

Playing with the settings on the camera as an excuse to walk.

Watching planes land and take off while walking South of the airport.

GET OVER IT! Accept your disease...

What I'm writing here is all opinion so if you don't want to read opinion, don't read. This is a long post.

I'm not just talking about Addison's Disease, endocrine disease or any particular disease. If you don't accept your disease, you will live a half life.

Stories of a couple of people have struck me this week, these are people who have diseases and don't/won't take their medicines to make them well or at least make them live decently. They don't want their bodies to become "dependent" on the medication. Their world revolves around pain, sickness, medical procedures, hospitals and general misery. This is a lack of acceptance of disease.

It's incredibly selfish to deny you have a disease whey you actually have one and continue to mistreat your body. You may not care about yourself or your health but it's downright crappy to punish your kids, spouse, parents and friends by slowly commiting suicide in front of them. Most likely your lack of acceptance is because your brain chemistry is so screwed up from being sick for so long and you're depressed. Try taking the medicines that you are supposed to take and see if it makes a difference in how you feel.

If you don't accept your disease, your life is going to suck. Once you do accept your disease, your life inevitably will get better.

I am not saying a person has to accept the limitations of a disease. Often times, limitations of a disease are preconceived or totally false notion that an uneducated doctor cooks up to keep us from getting our hopes up or perhaps the doctor doesn't know any better. Once you accept your disease, your life is bound to get much better.

You accept your disease and here's what you can do from there:

• Ask for help from knowledgable doctors, spouses, friends. If you don't accept that there's a problem, you won't ask for help.
• Research your disease because a doctor can't and won't know everything.
• Take the best medications for you at the correct times (many times a doctor will prescribe a medication that works but there's on that is a healthier option, hydrocortisone vs. prednisone. How many Addisonian's have been told, "Take 10 mg when you wake up and 10 mg before you go to bed."? ALL WRONG information from a misinformed doctor) See previous suggestion. DO YOUR RESEARCH
• Find others who are well and live well with their disease.
• Eat right for your disease. Avoid certain foods if necessary. I wouldn't consider diet sodas a food but they should always be avoided at all costs. I think diet soda is poison.
• Take the right supplements for your disease.

Once you get the basics of foods and medications straightened out, most likely you will feel so much better than you did before you were diagnosed. Feeling better will give you the energy and positive mental outlook to be able to do more. By more I mean: being able to play with your kids, walking to your mail box, clean the garage. I don't necessarily mean some huge athletic goal.
I wonder, do the rest of you who feel well look at your pills with wonder and think, "Holy crap, this little pill has made a huge difference in my life. I'm lucky!"? I do. Before I was diagnosed, my life sucked. I was unable to do much of anything. I would fall asleep while reading to my son, I couldn't walk up and down stairs, I was constantly sick and throwing up. Now, none of those thing happen unless I do them to myself. Any of you who aren't dead (or bored to tears and have read this far!) should try being appreciative of the little white pills we take!

Once again I digress and go off on goal setting...

Set a goal of doing something, SOMETHING! If you have no direction, you won't go anywhere.

You may or may not be able to reach your goal but ultimately it's not the goal that's important, it's the journey to the goal. For example, I'm 5'2" tall and nearly 40. If I got the bizarre notion in my head that I wanted to be a pro basketball player (I could get that idea in my head!), I'd have a hell of a time trying to become one. Learning the rules of bball, the names of the teams, positions, working out with a basketball specific workout, playing on a league, etc..
Set a goal of acceptance.
Set a goal of taking the right medications at the right times.
Set a goal of eating well.
Set a goal of networking with others who have the disease you do.
Set bigger life goals and create the steps needed to reach them.

"To motivate yourself every day, the most important thing is to set a goal. If you have a goal, you know what you must do because you have a plan. And if you don't reach that goal, try and try again." -Haile Gebrselassie, world record holder in the marathon (2:04:26)