I do not get many opportunities to one-up my disease. By far the most dangerous and deadly component of APECED(APS Type 1) is Addison’s disease, or adrenal insufficiency. Any major stressor, such as an accident, broken bone, high fever or stomach virus could require an emergency injection of Solu Cortef. This does not come in an auto-injector, nor is it carried on ambulances or administered by emergency personnel. The primary mission of Adrenal Insufficiency United is to change this, but until then, it is up to me and my family to make sure I have this when I need it.
I have required my injection on multiple occasions since my diagnosis, one of which was immediately followed by a trip to the emergency room where I arrived comatose. High doses of hydrocortisone are vital to keep my organs from shutting down.
When I was first diagnosed, I asked for B12 shots so I could practice giving myself intramuscular injections and also allow my husband to do the same. At the time, my daughter was in kindergarten, so we simply taught her the importance of communicating my condition to others and pointing out the location of my emergency injection kit.
Now that my daughter has grown into a confident, 11-year-old young lady, I decided it was time for her to learn to give me an injection. The more people around me who are capable of acting in an emergency, the better my chances. What I did not think about, however, was how this simple, 10-minute lesson would empower her, build her confidence and give her a feeling of supremacy over my disease. In her entire memory, Addison’s disease has been an enemy; it has been her adversary, one that has robbed her of a “normal” mother. I thought I was doing something for myself, but I was actually giving my daughter an amazing gift – the knowledge and ability to defeat this evil monster she has known for so long.
Many people remarked at how comfortable she seemed. Yes, she was a bit too giddy at jabbing her mother with a big needle! But just for the record, she has no interest (at the moment) in going into the medical field.
Her interests are in STEM; maybe she has been overexposed to doctors and hospitals. However, I am convinced if she manages to combine the two, one day she might make an excellent Bond villain, and I can be her chronically cranky sidekick.