Be Prepared, Not Scared
I’ve said this before, but it’s worth repeating: living with adrenal insufficiency is like switching from an automatic to a manual transmission car, without an RPM gauge to tell you when to shift gears. It takes practice and you must learn your body’s signals of an impending low cortisol episode. Journaling symptoms is the fastest way to write your own manual. Life-threatening adrenal crisis can and does happen (statistically, one every ten patient years). But, there are several tips I believe can mitigate the risk of that happening to you.
Create a Safety Net. Make sure you can get help if you ever need it. Find out what the local protocols are in your area for paramedics. You can do this by checking out Adrenal Insufficiency United’s website (https://www.google.com/maps/d/u/0/viewer?ll=34.03408949803864%2C-96.60538654999999&z=4&mid=1-
Y7R48QlzG_N8lsOqVRtxRDdfmjyH39x) or contacting your local fire station. Some places have rules that do not allow paramedics or EMT’s (which are different—they have different levels of education and permissions for treatment) to administer patient-carried medications, and very often they do not carry solu-cortef on an ambulance. Be sure your injection kit has the prescription label somewhere so they know it’s a legitimate medication, how to administer it, and your prescribing doctor’s contact information.
Contacting the fire station can be very helpful—just introducing yourself and bringing treats can go a long way. I discovered that my area has a database of patients with rare or specific treatments for emergencies and got added to their list. If a call ever comes in from my address, they will know what I need.
It’s also a good idea to let people around you know what signs to look for in case you ever need help. Yes, I’m THAT person who emailed her neighbors with medical information. Laugh if you want to but if it saves my life, I’ll be the one laughing. Sharing information and educating our families, coworkers, and friends is important. Our condition is rare and nothing to be ashamed of. Ask yourself, would you share the information with others if it was your child or someone else you love who had this diagnosis?