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.
- 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.
- 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.
- Take control of your health. Get all of your medical records.
- 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.
- 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.
- 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.