Long time, no post, but a lot has happened. Firstly, The letter to my doctors from the endocrinologist awakened my rheumatologist to do testing. Guess what – I’m not only adrenal insufficient, I flat-lined the ACTH test that checks for cortisol rise (My initial test level was 2.2 with a final test level of 2.3 when the baseline should be a 3 with a rise of at least 15 to be normal range. We expected to see a rise of 3-5, indicating sluggish adrenals. .1 (note the decimal) is considered anomalous, meaning no rise whatsoever, a flatline.) This means I have, at the very least, severe secondary adrenal insufficiency but more likely primary insufficiency, AKA Addison’s Disease, that’s been thus far relatively controlled by the prednisone I’ve been taking. Somewhere along the way, my adrenals shut down. Addison’s is an autoimmune disease and autoimmune conditions like to pile upon each other so it’s difficult to pinpoint exactly when, but I suspect this happened in 2015 when I was hospitalized with a myriad of mysterious symptoms that I have never fully recovered from. I will be having further testing at the end of this week to determine how much additional support I need, but my fight over prednisone is officially over. My 9/ 8.5 rotation is my stop point. My rheumatologist confirmed this yesterday. This rotation filters with my Lasix 20/40 and meloxicam/ibuprofen rotations that keep down my swelling.
Such things, unfortunately, become routine and are the reason I now have the king-size version of pill sorters – a necessary evil that actually does make things easier. My spouse helps me fill my pills each week, not because I’m unable, but it’s easier to double team the task. Together we can complete the job in twenty minutes compared to the hour-plus it would take one person.
Mixed media art is one of my coping strategies. What’s yours?
But I digress.
So what do I do now? I breathe deep, get up early to have fasting blood work to see if I need additional hormonal support, and know that the fight was worth it. I was right. I fought for my life and survived. I didn’t end up in the hospital, the ICU, or the grave. I spoke up.
It’s a bittersweet ending. I knew I had probable secondary insufficiency but Addison’s? All right. It does make sense. In a lot of ways, and now I’m glad I spoke up.
You speak up too.
(waves) Until next time.