This blog, in many ways, is my attempt to "write the book" on Addison's Disease, thyroid disorder, and how to lose weight on steroids. Part of me wishes there already was a book written on all this. While I have found lots of helpful information online (which I am trying to keep track of under Resources on your right), there isn't a "Now You Have Addison's Disease: Here's What To Do Next" handy-dandy book out. There isn't even, to my knowledge, a book for doctors on how to treat Addison's Disease.
Lets pretend that's the reason they screw it up so often.
To wrap up this month of AI Awareness, I thought I would summarize the most important/life-altering/misunderstood info I have learned since diagnosis in a pretty little post.
So without further ado, I present the Top 10 Things You Should Know If You Are Diagnosed With AI
(according to me):
10) Emergency Kit - I carry an emergency injection with me at all times and you should too. It is easy to administer and even has step-by-step instructions with pictures inside. If I faint or am knocked unconscious, I hope and pray someone will find this emergency kit and actually administer the life-saving medication inside. Also, many ambulances do NOT carry emergency cortisol injections. Better to have your own and be prepared than to hope help is coming.
9) Medical ID Bracelet - No one will know to check your bag for an emergency injection kit, if you aren't wearing your medical ID bracelet! My bracelet has my name and then reads "adrenal insuff, steroid dependent". I have mine in both English and Spanish. I also recommend getting an ER letter prepared so that you receive proper treatment in a timely fashion.
8) Adrenals Then Thyroid - Often times, thyroid and adrenal disorders go hand in hand. My thyroid problems were diagnosed before my adrenal issues and so were treated first as well. Which caused me to go into about a dozen adrenal crises. Imagine my surprise, when years later, I read a medical study that specifically states one MUST treat adrenal problems BEFORE thyroid issues or risk throwing the patient into crisis.
Too bad none of my doctors read that study either.
7) Diet Does Matter - I have heard every theory in the universe about what to eat and not eat with auto-immune disease. I have had one doctor insist I cut out gluten while another encouraged me to get a "burger and fries". I have read dozens of diet books, health books, and auto-immune protocols. I have tried most of them and I didn't particularly care for any of them. What
has worked best for me is eating whole, natural foods. You know, like the kind that grow in the ground, not in a factory. If your Great-Great-Grandmother wouldn't recognize it as food, don't eat it! I try to avoid gluten, grains, soy, diary, alcohol, caffeine, and processed foods (like 90% of the time...then I eat cookies). What this works out to practically is a vegetarian protein shake for breakfast (I like to add chia seeds since they are packed with omegas and other goodies for your body), a salad with a hard-boiled egg for protein for lunch, and salmon with roasted veggies for dinner. Fruit for snacks and dessert. A plant-based, pescadarian diet works for me and I feel so much better than when I was filling my body with carbs and other crap.
6) Water Matters Too - I would have NEVER guessed it, but the kind of water you drink can really affect digestion. I struggled with diarrhea off and on for, oh, the last 10 years. I saw so many doctors and gastros and tried so many meds. Speed uppers and slow your digestion downers and whatever else they could throw at me. The doctors finally just called it IBS (which
Is
Bull
Shit) and I spent years agonizing over what to eat and not to eat to stay feeling well. After finally getting diagnosed and receiving medication, my digestion problems improved drastically but I still struggled with loose stools. I honestly had gotten to the point where I just accepted it as a fact of my life and really didn't give it much thought. Then I started drinking kangen or alkaline water (the kind that is pH balanced for optimal hydration) and was shocked when that problem totally disappeared! If I drink regular water, it starts again. So I am pretty convinced. For my body, pH balanced water is the way to go.
5) Be Skeptical - Double check everything your doctor or medical professional tells you to do. I learned this the hard way, when I was given a dose 5 times higher than I should have been. 5 times MORE! I'm still shocked at this gross over-medication AND that I didn't check the standard dose before agreeing to take it. I hate to say it, but blind trust in doctors is not going to help you when you have rare disease. Run everything by one of the online or Facebook support groups (there are tons!) or shoot me an email. You will find that many others with Addison's Disease are more than happy to help you avoid the same mistakes they made.
4) Zero Days Off - You don't get a "day off" from Addison's Disease. Sure, you can probably get your gut to the point where you can cheat on your diet here and there, but you MUST take your medicines every.single.day. Even missing one day of your regular dose, especially if you are on Prednisone or HC (which cycle out of your system much faster then their longer-lasting, but oh-so-evil sibling, Dexamethasone) can land you in the ER. In addition to carrying an emergency injection, you should carry extra Prednisone or HC pills as well. This way, you can stress dose as needed.
3) Stress Dose - I have had two GPs tell me straight to my face that I don't need to stress dose for Addison's Disease. I have since fired both of them because they were, simply put, totally wrong. Stress dosing is super important and something only you can figure out for yourself. Since we don't have an easy way to monitor cortisol levels (like diabetics can check their insulin levels with a finger prick), you have to guess when your body needs more cortisol. In general, anytime you are ill, injured, or under emotional stress. In reality, you may need to stress dose for an especially long day at work, to exercise, or even after a fight with your partner. Figure out what your body's signals for low cortisol are and stress dose as needed. I've figured out that when I feel light-headed, shaky, and nauseous, I need more cortisol.
2) Fire All The Doctors - Pre-diagnosis to post-diagnosis, I have gone through more doctors than I care to count. I used to feel like I had to accept whatever doctor walked in the door or that my insurance assigned me. Since I am no longer in the States, I have learned that I can pick and chose my own medical team and fire the ones that aren't helping. I have a "one strike and you're out" rule when it comes to doctors. If you give me an incorrect piece of information once, you're fired. My health is too fragile and important to hand it over to doctors who aren't really, really well informed on auto-immune disease (you know, like, more informed than me).
If you are unable to get the kind of medical care or testing you need at an affordable price, because you happen to live in a country that believes making money off sick people is cool, please contact me. My dream is to convert our family hotel into a health center for people with rare disease to come for treatment. Medical care here, without any kind of insurance, is stupid cheap. Like $20 and a one week wait to see an endo, no referral needed. True story.
1) Supplement Traditional Treatments - I do not know a single person who is thriving with Addison's Disease ONLY using traditional treatments. If you refer back to point number 4, you will realize that I am in no way advocating skipping your medications. However, there are many, many other things you can do to support your overall health, besides taking your prescribed medications. Writing, reading, tap dancing, acting, taking supplements, meditating, and practicing yoga all help me tremendously. I'm obsessed with essential oils and making my own chemical-free health, beauty, and cleaning products. I've completely changed my lifestyle to avoid as much stress as possible. I don't hang out with people who are always stressed out, or complaining, or just emotionally needy in general. I am quite selfish with my energy and who and what I spend it on. And it's great. I highly recommend it.
Love,
an Addison alien
who is excited that almost 4,000 people have already clicked on this little blog during AI Awareness month. That's 4,000 more people than before!
