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.

Monday, August 8, 2016

RANT: Diagnosed but not treated is malpractice and trying to kill people

This is going to be short and sweet.

Recently, someone came to me and told me they were diagnosed with primary adrenal insufficiency but sent home to wait for the results of more blood work.


Symptoms, low sodium, high potassium, a random cortisol draw of less than 1 (it was not 8 am but it was NOT midnight either) and hyperpigmentation.

The proper protocol would have been to draw blood and test all basic adrenal hormones (give an ACTH stim test immediately if available) give a bolus of Solu-Cortef, send the person home with a prescription for hydrocortisone to be taken in divided doses and a somewhat high dose for the first week or so, a prescription for Solu-Cortef and Zofran and the NADF emergency protocol.

I'm actually laughing while I write this.  Doctors have NO CLUE.  They will send any other person home on massive doses of steroids for almost no reason but not send someone who might DIE or become BRAIN DAMAGED from low blood sugar due to lack of cortisol home with nothing.  Undiagnosed people can also have a HEART ATTACK from the classic symptom of low sodium and high potassium.  On two occasions over the last year, my husband (who does not have AI) was sent home with as much steroid as I would take in a month "as an experiment" "let's see if things improve".  He couldn't sleep and felt worse.  Experiment over.  In someone who is symptomatic for AI and has test results to indicate AI is a possibility, a week of steroids will NOT HURT.  If nothing else, the trial will alleviate the symptoms, keep the person alive and the experiment will have been a success.

Is there any disease that presents with low cortisol, hyperpigmentation, low sodium/high potassium and weight loss that's helped by physiological doses of steroids?  I think not.

A doctor who does not send a person home with the following is comitting malpractice:

  • A bolus shot of Solu-Cortef
  • Rehydration
  • A prescription of HC and instructions on how to take it
  • Emergency instructions from the NADF
  • Prescription for Solu-Cortef and Zofran and instructions on how to use it
  • A follow up appointment three days later to go over blood work
How can I/we get this life saving information out to doctors?  Most never have a patient with AI.  Why should they learn anything?  Thinking along those same lines, why would they not reach out to a physican who can help the patient quickly and better?

Friday, July 22, 2016

157 miles pushing a 200 pound cart across Death Valley and adrenal insufficiency

This blog is one place that I'm going to make a big deal about my latest adventure.  I am not looking for kudos or comments.  I want you to rethink your life if it is not what you'd like it to be.  People with adrenal insufficiency need to know that they can do whatever they would like to do as long as they are willing to put in the work, research and effort.  

The picture above is me crossing Death Valley.  I went from -280 feet below sea level to the top of Mount Whitney 14,500 feet and then had to go 11 miles down the trail to hitch hike to town.  The actual run I did is called the Badwater 146 solo-selfcontained (total of 157 miles with the 11 miles down from the top of Mt. Whitney).  I was the only participant.  I carried all of my own food, water, clothing and gear.  Temperatures ranged from 67 degrees Fahrenheit to a two hour sustained high (a few feet off the pavement) of 138 degrees.  It took me 80 hours 57 minutes.  I am the 5th person to successfully complete the crossing and the second woman.  I bested Lisa Bliss's time by 8 hours.  Lisa did an inspirational TED talk about her experience.  

I have been treated for adrenal insufficiency since 2001.  I have been treated for hypothyroidism since 2006.  I am an active participant in my health.  I research, counsel and study adrenal insufficiency and comorbid conditions.  I say this because so many people use adrenal insufficiency and horrible medical guidance as excuses for being non participatory in their own health and well-being. 

Because there is NO research on menstruating women with adrenal insufficiency who do true endurance exercise (dudes on an indoor bike for one hour, three times a week is NOT endurance exercise!), I have spent the last ten years making mistake after mistake and then learning from those mistakes.  The guidance of adding 5 mg of hydrocortisone for exercise doesn't translate when you're doing true endurance exercise.  If you follow this guideline for endurance exercise, you will vomit, poop your pants and then fall asleep on the side of the trail.  For years, I experienced this in an effort to "follow the rules".  It almost killed me a time or two. 

Nearly everything about adjusting meds for adrenal insufficiency has to be done by feel when you're in the moment.  This rule applies for mowing the lawn as well as it does crossing Death Valley pushing 200 pound cart uphill at 135 degrees.  Here is my example.  I was taking 10 mg HC and 200 mg of sodium per hour for each hour that I was exercising.  At one point, I noticed I was severely dehydrated (tenting skin on my hands) and I had salt all over my pants.  So I think to myself, "I'm drinking adequately, taking sodium and yet I'm unable to retain either fluids or sodium.  What will fix this?"  The answer is that I did not have enough Florinef to help me retain the sodium.  Without enough sodium, I was unable to retain water.  Solution:  Increase Florinef by .025 and double sodium intake.  It worked like a charm.

You might wonder how I got to the point of doing what I did.  I did the things you ought to be doing now no matter who you are and what your circumstances.

  1. Sleep-sleep regularly, do what you can to sleep well.  If you need sleeping pills to sleep well, shed the guilt and just freaking sleep.  If you have poor sleep hygiene, improve it.  Sleep regular hours.  Say "no" to stupid social commitments that keep you from sleeping.  For most people, sleep improvement is something they can do without "help" or medical guidance.  
  2. Eat-eat well, eat regularly.  Don't give me the BS that good food takes too much time.  It doesn't.  Salad comes premixed, eggs come boiled, potatoes can be thrown in a microwave, fish can be defrosted and cooked in minutes, beans can be tossed into a crock pot and the excess frozen.  Quinoa takes 20 minutes and you can cook it ahead of time or in a rice cooker.  Buy this book:  Food Rules an eaters guide It's an easy, no nonsense read.  Think you don't have time to read it?  Buy it and read a page each time you eat.  
  3. Take control of your health.  Get all of your medical records.
  4. Get help with your diseases by joining a forum or getting advocacy assistance (shameless plug for Addison's Support Advocacy.  I can help you for a fee.  The forum is free.)  Make sure the forum is a good fit.  My forum is full of healthy people with adrenal insufficiency who want to help others get healthy.  A forum full of sick people who can't figure out why they are sick is great for emotional support but not good for getting well.
  5. Set goals.  Get life counseling if you need it.  Get training help if you need it.  Yet again, I'm going to plug myself.  I have a training business called "Tough Love Training" My specialty is as one client put it, "old and broken" as well as mid to back of the packers.  I can refer you if you are fast and really good, I like helping the people who are like me, chronically ill, have special things in their lives that need to be considered and want to reach goals that are high but not unattainable.
  6. Stick to a plan but not to the point of hurting yourself.  Set goals and set steps to achieve those goals and then take time each and everyday to make baby steps to your goals.  It is possible.
People with adrenal insufficiency, you can.  I am a perfect example of that.  I set my goal high and took baby steps for years.  I achieved my goal.  You can too.

Friday, July 1, 2016

RANT: Believe in you (similar to the last one but a little different)

Motivational Quote - I believe in me.

The last rant was about self-confidence.  It was intended mostly for getting better medical treatment.  This rant is about believing in you and why you should believe in you.

We all experience life differently.  We all have different genetic make ups, physiology, diet, exercise and deficiencies and/or excesses (known and unknown).  We all manage our AI and other issues differently.  As a result of all of these differences and many more, we all will experience life very differently from others.  At different points in our lives, we may experience similar situations differently.  For example, I used to be a puker.  Now, I'm not.

When you experience things, good or bad, write it down.  Have proof of the things that are happening in your body.  No offence, you probably don't have a photographic memory (OK, you over there, you might, most of us do not).  Written proof of your experience is evidence of how you feel and when you felt that way.  We all need this information to believe in ourselves and to see patterns.  I digress!

Even if you don't write things down so that you can see concrete patterns (or total chaos), if you have symptoms, you have symptoms.  Believe it.  Do not let a friend, relative or medical professional tell you that it's not possible for you to feel something.  Just because people might tell you that something is not possible, it doesn't make your experience less valid.  Yes, you can be fatigued on 20 mg of hydrocortisone.  Your thyroid numbers might be "normal" (according to unresearched medical professional who is ignoring all of your obvious symptoms).  If you are tired, you are tired.  If you have a doctor invalidate your experience, get a new doctor IMMEDIATELY.  If friends and family tell you that you're not tired or what you are experiencing is not actually happening, I don't know what to tell you but personally, I wouldn't share information with them any more because they are jerks.  Friends, family and medical professionals should believe in you and your experience.  They should listen and feel empathy.  They should help you find solutions to your issues.

If you don't have a good support system that listens and empathizes, find one.  You deserve it.  You will get well faster if you believe in you.  If you believe in you, you will feel that you deserve to get well and you will find ways to make that happen.  BELIEVE IN YOU.