June 2013 in pictures

Well, I'm catching up.  I will keep trying to catch up since these pictures are entirely selfish and I love looking back on them.  They are also for Wanda and Heather specifically.  I'll try to keep the words to a minimum.

Wood stork, ibis and ducks a stone's throw from I-75 

One day, I got bold and got Cracker Jack out.  She's BEAUTIFUL

I see this sign on the way home from the birds.  Cracks me up EVERY time

How appropriate.  Both Heather and I had homes that could have been aptly titled "Pink Hell" before we renovated

Smooth Move?  Really?  There's a laxative tea with the same name

I could qualify for this camp

The hat I wore for Vol State.  Peace River in the background

One of the local department stores got flooded. 

Beach day in Fort Myers!

Zane, Gracie, Harrison and Max celebrating Grandpa Chuck's birthday.  Grandpa Chuck LOVED buying TP

Cool mushrooms

My sister, Nicci, Grandma Margie (101 years old) and my son Zane (Margie's great grandson)

My new experiment

My boy at the 24th Telluride Bluegrass Festival, fifteen years ago.  Where does the time go?

Rant: The Goldilocks Principle

Yes SueC, this is for you.  I hope it makes sense and helps you and others get their meds right.

You all know the story of Goldilocks, right?  She breaks into the bear's house and ransacks it, beds are too big or too small, food is too hot or too cold.  Eventually, she finds stuff that's "just right" for her.  The same holds true for lab ranges and meds.

Taking extra hydrocortisone or thyroid meds is not better for you despite the focus of our culture on "more is better".  Too much hydrocortisone will lead to long term problems like insomnia, weight gain, high blood pressure, etc.  Too much thyroid meds will make you hyperthyroid and, if you have adrenal insufficiency, make you need more hydrocortisone or you will feel hypothyroid.

Confusing, right?  And what the hell does it have to do with Goldilocks?  Well, you'll never feel optimal if your meds are over or under replaced.  You'll feel well if they are "just right".  Contributing to the confusion is that there is no reliable way to test for proper cortisol replacement.  Adding to that, doctors are frequently telling patients to get by on the lowest possible dose of hydrocortisone that they can get away with or they will end up with osteoporosis, fat and criticized by said doctor.  Very often I'm seeing people guilted into surviving each day on 15-20 mg of HC/day despite symptoms that they are completely and totally under replaced.  Their lives suffer, their families suffer and their bodies are ravaged by frequent illness, nausea, exhaustion and malaise.

Let's break this down into bite sized parts and assume you've been diagnosed with adrenal insufficiency.

• How do you feel and what are your symptoms?  
• Low HC?  Low BP?  Nausea?  Weight loss?  Fatigue?
• High HC?  Irritable?  Higher BP?  Weight gain?  Trouble sleeping?
• Just right, you function like a normal person!
• Has your thyroid been tested properly?  And you will say yes to this.  Most likely, the answer is no.  If your doctor solely tests TSH, you're screwed unless you are ridiculously out of the range.  If you're secondary and your TSH is low or low normal and your doctor doesn't put secondary hypothyroidism together with low or low normal TSH, you're totally screwed.
• Proper testing of thyroid is testing the FREE T4, the bioavailiable portion.  
• If your Free T4 is too low, your TSH might be normal, might not (making it an invalid way to determine thyroid status).  Low Free T4 will cause you sleep issues, hair falling out, eyebrow thinning on the outer third, inappropriate weight gain, infertility and constipation.  
• If your Free T4 is too high, most likely your TSH will be suppressed and you'll feel shitty.  Your degree of shitty depends upon how you replace your cortisol.
• All of this leads to the discussion of "high", "low" and "just right" Free T4.  The current lab range for Free T4 is plain old dumb and quite unhealthy.  A Free T4 of 1.3 for a woman and Free T4 of 1.4 in a man with adrenal insufficiency tends to be optimal.  The range is .9 to 1.8.  HUGE, considering where optimal is.  YOUR DOCTOR WILL NOT KNOW THIS.  You ask, why?  Because your doctor often just goes by lab ranges and is not highly educated about thyroid, if it's in range, he will think you're AWESOME despite symptoms to the contrary.  SYMPTOMS, SYMPTOMS, SYMPTOMS coupled with labs are the very best way to figure out what needs to be fixed with your thyroid.
• How do you get your thyroid "just right" if your Free T4 is not 1.3/1.4 and you want to try it?  Beg to change your meds so that you can try being in the middle of the range as your doctor's most likely is.  His wife's Free T4 is probably mid range too.  Ask what it will hurt to get that number to mid range?  The answer is, there is no downside to having a mid range Free T4.  If he gives you an answer, it's bullshit unless you've got Lyme or some other oddball thing wrong with you.  99% of the time, mid range Free T4 is optimal.
• Let's say your Free T4 is "just right" and you're dosing your HC physiologically.  How do you feel?  What are your symptoms?  See the first bullet point.  Very often, people are under replaced with their hydrocortisone because their doctor has a hard on for 20 mg of hydrocortisone being the magic number.  Let me tell you, it's not.  You and only you (with your doctor's blessing) can determine the right dose of hydrocortisone.  It might be a low number and it might be a high number.  If you go by symptoms, the number doesn't really matter (unless you're taking 50 mg of HC or more every day).  HC dosing is NOT WEIGHT BASED.  That's total bullshit and I'm living proof of that.  I'm small and getting smaller on what some would consider a high dose of hydrocortisone.

Don't let your doctor bully you or God Complex you into thinking everything is "just right" when it's "too high" or "too low".  Shoot for optimal, it's not unreasonable to want your hormones mid range (JUST LIKE HIS ARE).  You deserve it and it's not a ridiculous request.  Compromised quality of life, frequent exhaustion, hospital visits are NOT a part of adrenal insufficiency unless you allow your doctor to bully you into believing it.  The previous symptoms are that you are regularly skimping on hydrocortisone.  If your HC is right, you're much less likely to be sick and/or tired.

If you have any questions about this post, please post to my forum www.addisonssupport.com.

Backyard Ultra where friends are family

My wonderful friends who make me laugh and laugh and laugh until I pee my pants.
Shannon, on the left, is who I ran with a Vol State this year.  Tim, on the right, is one of the guys with whom I did a loop at Barkley (he completed 100 miles in 24 hours at this race
Photo credit:  John Price?

Last weekend, I had a quick trip up to Bell Buckle, Tennessee to run in Big's Backyard Ultra.  It was a crazy, quick trip for me.  I don't usually drive so far, run far, camp and hurry home.  Luckily, it all went well and my recovery was quick.  I am finally learning how to manage the Addison's, train in a way that works for me and recover faster than in the past.

The drive was 750 miles each way.  For me, that's a lot of miles.  On top of that, I decided to drive through Atlanta, Georgia during rush hour.  An eleven hour drive turned into fourteen.  I slept in the back of the car since it was entirely too late to set up a tent (for lazy me).  Finally, I planned OK.  The race wasn't until Saturday.  Driving happened on Thursday.

Friday morning, JP and I met in Manchester, Tennessee headed over to where the race was being held.

Gary Cantrell (AKA Lazarus Lake)
 leaning against my car.  The 314 sticker
 is from Vol State, another one of his races

I got my race number.  The only time I'm first is
when it's the food line or packet pickup

I have a feeling that this is the bugle that's played at the
end of a Barkley loop when you quit.  It was
 casually tossed in the back seat of the race director's car 

The night before the race, nearly everyone went to Sir Pizza.  However, Gary and Mark Williams and I went to a Thai restaurant.  Mark Williams was the very first person to complete five loops at Barkley.  I was in Ultra Dork Heaven while having dinner with them.  One of many highlights of this race.

The race started the following morning.  Just a word about the race.  It's...unconventional.  Each hour, on the hour, a 4.166 mile race started.  In order to start the next loop, you had to finish the last loop in 59:59 or less.  You were not allowed to start the next loop until the bell was rung.  Tough for the fast guys and gals because they had to pace themselves much more slowly than people like me who were pushing themselves to complete each and every lap in time.  The fast people didn't want to finish too fast because it was cool and they would get cold before the next lap started if they finished too quickly.  If you're slow, you need time to drink, eat and pee before the next loop started.  It was a delicate balancing act for all of us!  

There were 38 starters and the race continued for 35 hours until Tim Englund was the last man standing!  Once again, it was an honor to toe the line with the woman who holds the record for most 100s completed in a year (Liz Bauer), Ray K, transcontinental runners, the first Barkely finisher (Mark Williams) a fifteen time MMT100 finisher (Keith Knippling) and Marcy Beard who was the last woman standing two years in a row (30 hours this year, 27 last) and others who have done amazing, amazing things.

I finished seven loops in the time limit and completed the 8th :05 over.  I was so happy with my results.  Pathetic, I know.  The course was about .5 on road/driveway and 3.6 on hilly, fun trail.  I got more elevation gain and loss in eight hours than I've had since July when I did Vol State.  I miss trail and loved every minute on it talking to friends and making new ones.

The start of one of the early loops at the Backyard Ultra
Photo credit:  Lisa Bliss

After I DNFed, I decided to crew for Mark Williams.  Being the polite Englishman that he is, it took several loops for him to loosen up and start asking me for help.  I had a great crewing position.  I was in a spot where there were three hardcore guys.  Mark was totally prepared but a little scattered in an "I'm not sure what I'm going to need but I've got everything I'll need" kind of way, Jim Ball just had EVERYTHING on a couple of big tables, Mark L had nearly nothing, needed nothing and was frequently texting between loops!  I helped Mark for the last five minutes of each hour up until I went to sleep (yes, I'm a lazy volunteer crew) and got up to help him at my usual early waking time.  

This is how the time between loops was spent.
"Corn off the cobb" was passed around.
We laughed hysterically while trying to keep warm eating chili and brats

Crewing Mark in the early morning hours
Photo credit:  Ray K

Most importantly, Addison's info.  I skipped my Florinef the morning of the race in anticipation of the large quantity of mineralocorticoid I would get in the large doses of HC I took.  I got foot cramps later in the race and supplemented salt so I'm not sure skipping Florinef was the best idea.  For the first time ever, I took ten mg of HC per hour.  WOW!!!!!!!!!  I felt great and performed great for the first six loops.  To those of you with steroid guilt and fear, don't project on me.  I wasn't all hopped up or anything.  I felt NORMAL.  I didn't have stomach issues for one of the first times ever  I was able to keep drinking water and eating for the entire eight hours and lost weight instead of swelling up disgustingly and gaining five pounds.  After I was done, I had enough energy to do the crewing and stay up late, get up early, crew more and then drive for eight hours.  I think it's important to note:  I think I've been under replacing for ultra events.  I was on increased HC for two days after the race.  This might be the first time I've done a race and felt reasonably tired (as opposed to excessively tired) for the conditions, my training, the effort I put into the race and all of the extraneous fun during race weekend.  I was reasonably sore after but not obscenely.

I have to say, the friends I've made through these Tennessee races are some of the most wonderful people I have ever met.  We can all let our hair down and be who we are, farts and all.  We share some unique experiences, a love for these races, a love for adventure and desire to test ourselves.  Some I've only met online and then meet at these races.  I'm always amazed at how it feels like I've known them forever.  I'm getting a little choked up at how much I love and respect all of them.  Incredible athletes and great friends, all of them.  Thanks guys!

A bunch of us (no John Price) five minutes before the race started