Mourning Life Before Diagnosis
Yesterday I had a profound moment. I finally mourned the loss of my life as I knew it before I was diagnosed with Addison’s Disease in June of 2022. This is a disease where adrenal glands don’t produce enough of two key hormones, aldosterone and cortisol. Aldosterone helps manage sodium and potassium levels which is key to healthy blood pressure. Cortisol helps our bodies manage stress including the “fight or flight” response. As a result “normal” stresses can be debilitating in a variety of physiological and psychological ways.
I have likely had this disease for most of my life. I had an incident in my pre-teens (nearly 40 years ago) that led to a misdiagnosis of a neurological condition. As a result I was placed on medications that sucked the life out of me. What’s worse is that I continued to have these “events” even though I was doped out of my mind. After several years it was determined that I didn’t need those medications and lived a “normal” life. Then around 20 years ago I started having difficulty living a “normal” life. Over the last two decades I sought answers from a variety of doctors. I was told a lot of things — some which have turned out to be true and others were not. ADHD, asthma, depression, high blood pressure, sleep apnea, chronic sinusitis, yo-yoing of pre-diabetes/no pre-diabetes, Hashimoto’s thyroiditis, and finally Addison’s Disease. The funny thing all these seemed to make sense — at least somewhat — but nothing really seemed to provide sufficient answers.
In July of 2022, I had what is referred to as an Addisonian crisis. Fortunately I had an emergency injection of steroids to help keep the crisis from progressing to the point where I could have gone into shock or worse. That scared me more than anything had in my life. I hoped that I would never experience that again in my life. I had another crisis in July of this year (2023). This one shook me even worse.
I now live in almost constant fear of having another crisis. Again, “normal” stresses can be debilitating — including the stress caused by fear of another crisis. What had been a great job that was both gratifying and manageable now often seems overwhelming. Mowing the lawn used to be a time of “sanctuary” — it is now something I can’t even imagine doing especially in the heat. There are so many more examples of the little things in life that now seem enormous. It’s all very frustrating.
I miss my old life.
I mourn my old life.
I’m afraid for what the rest of my life needs to be.
Yet I am determined to make the best of it.
I have no idea what it will look like. I still feel like I have a lot of life to live. I have a motto that I don’t want to die with any music left in me. And I have a lot of music left in me. So maybe that’s it — I need to realize that even though my life as I knew it is in the past that doesn’t mean that it’s over. My story isn’t fully written yet. While it may not be the story I wanted my life to be or the story that my life was the final chapter hasn’t been written yet. Who knows — it may end up being better than I ever imagined.
