Addison’s Disease Resources

A picture of a painting that says "Joy"

Getting Emotional About Addison’s Disease

I had a moment yesterday. My mom had been in town for the past week, and when she left yesterday morning she gave me a hug and said, “I’m so proud of you, if you ever need to talk, I’m here for you”. Then she drove away. I watched her leave the driveway and then jumped in my truck to go to work, and started to cry.

The rest of the day went well, but when I came home I talked with my wife about the exchange. I explained to her how I’ve read all this NEW information about Addison’s recently since we started the blog. Not all of that info has been happy. I’ve read about all the different side effects of the medicines people take after diagnosis and the lives that people are leading after being diagnosed with Addison’s.

She listened, and then told me that she was ok. “Stop worrying,” she said. “I’m eating better than I ever have before, and it’s making a huge difference” she explained.

When she was first diagnosed her parents and siblings sent her flowers with a card attached and a simple message inside.

“Smile. We Love You. It Is Going To Be Ok”

That card has been on our refrigerator for the past year, and that simple message is the best message for anyone going through what we are going through with Addison’s Disease. At the end of our conversation last night my wife looked at me and said: “I’m happy, It’s going to be ok”.

Our Conversation Helped Me Refocus

We’ve talked so much about the importance of being happy and focusing on the good, but it’s not easy to do that every day. Addison’s Disease is heavy. The purpose of this website, Living With Addison’s, is to help people deal with the heavy, and lead a fulfilled life after diagnosis.

I’d like to share a few of the articles and resources I’ve found that have helped our family find happiness and safety since my wife was diagnosed with Addison’s Disease. For me knowledge is power, and the more information I have, the better equipped I feel I am in times of need.

Addison’s Disease Resources:

  1. AARDA Basic Autoimmunity Education Module – This module gives you a baseline understanding of autoimmune diseases and their effect on the body. AARDA also hosts an Autoimmune Walk in several cities each year to help raise funding for much needed Autoimmune Disease Research.
  2. Adrenal Insufficiency and Addison’s Disease – This document will answer most of the questions you may have if you’ve been recently diagnosed with Addison’s Disease. It’s a great resource to keep bookmarked and share with family or friends when they have questions.
  3. AIP Diet – This diet has made a significant change in my wife’s health and happiness. Since starting her health practitioners version of this diet her headaches, bloating, and acid reflux have all went away. Since she doesn’t consume sugar, her blood sugar has remained stable too! We are proponents of this adjustment to your eating habits, but we don’t recommend the Autoimmune Protocol Diet unless you’ve had a conversation with your doctor.
  4. Solu-Cortef Injection Video – How to safely give a solu-cortef injection in an emergency situation.
  5. Stress Dose Guidelines – This document provides advice on how to increase your dose of hydrocortisone to prevent an Addison Crisis. A reminder that we recommend you consult with your Endocrinologist before making adjustments or changes to your medication schedule.

Blogs We Follow

The following blogs are not necessarily Addison’s Disease-related, but each of them provides value in their own unique way.

  1. The Autoimmune Wellness Blog – A great resource for delicious and healthy recipes that your whole family will love. It doesn’t matter if you’re following the AIP Diet or not!
  2. Addison’s Support Blog – Reading this blog is inspiring. Read it.
  3. Clearly Alive – This blog, written by Amber Nicole, does a great job of educating people on what it’s like to have Addison’s Disease by sharing stories from her everyday life. She is a wonderful ambassador for anyone that has Addison’s.

These are the resources I’ve used to stay grounded, and educated on everything Addison’s related. What other resources do you use? What should we add to this post?

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