Interstate Eats and Adventures

Last week we drove by campervan from the Boston area to Minneapolis, MN for the Adrenal Insufficiency United Summit. I had the honor of being a speaker. I also have adrenal insufficiency. The summit is hosted by and for individuals with adrenal insufficiency and their partners, caregivers, parents, family members, and friends.

Though the causes of the disease can be widely different, at the end of the day people with adrenal insufficiency take adrenal hormones that our bodies do not make. We all have to carry around an injection kit in case of an adrenal crisis. When people with this disease experience unusual stress that exceeds our daily dose of replacement medications, we need to take additional steroids. There are often warning signs but so often we cannot see them coming. Our caregivers, partners, and friends and family can see the warning signs sometimes before we do. 

Generally we are able to avoid a crisis but not always and when we do have a crisis we will always need help from others. We need that injection otherwise we can die from an adrenal crisis. This conference and past ones often have memorials to those who are no longer with us due to an adrenal crisis. We can go from well to sick surprisingly fast. When we are in an adrenal crisis we have about 10 minutes before it can become severely life threatening. When I come to this conference I am reminded of how important it is to be prepared with extra medication, a doctor’s note, and medical alert jewelry in the event of an illness or unexpected stress. 

I am there as a person who has suffered from this but I also get to present on the topics of fitness and nutrition with adrenal insufficiency. I explain key facts and findings that people with adrenal insufficiency can use to manage their disease for day to day movement and for when they want to go outside of their comfort zone. I shared possible dosing strategies for physical activity that people can use as a starting point for adapting to their own needs. I highlight study findings related to fasting and weight loss that are specifically relevant to this community.

We also had a breakout session that I thought only a few people would attend but instead we had a big crowd. Together we began the conversation about menopause and specifically how it relates to those with adrenal insufficiency.  We were lucky to have a functional endocrinologist with us who could help guide us toward more productive conversations with our medical providers. There is so much more that can be done here and I am looking forward to being a part of it.

I made some new friends as well. I am fortunate to be a resource to this group of resilient and knowledgeable individuals. I continue my research and pursuit of living life to the fullest with adrenal insufficiency not just for myself but for all of us. 

I introduced myself at the conference first as an adventure seeker then all the other things I am. The following posts highlight our trip to Minneapolis by campervan that zigged and zagged and even included a trip in tornado alley with a tornado and then further south to Austin, TX.