When I started feeling unwell in May this year, I had no clue that this would be the start of a radical life change for me. It was a very stressful time with our apartment lease ending and our landlords wanting to increase the rent considerably after they’d raised it substantially the previous year.
I blamed feeling poorly on a combination of having to move, the stressors of starting a new arthritis treatment, and packing by myself while my husband could do nothing as he was awaiting spinal fusion surgery. I developed a sharp pain in my right side. I thought I might have a kidney stone. My blood pressure rose to the point where my hypertension medication had to be doubled. Things got so bad that I went to see my new primary care doctor in early July. He sent me to radiology to get a an abdominal CT scan.
As it turned out, there is something new going on (a hypodense lesion on my liver). That is the source of the sharp pains. But that new thing has turned out to be the least of my issues.
The CT scan also revealed that a nodule on my right adrenal gland that was discovered in 2009 has doubled in size when compared to the last scan from two years ago. My primary doctor referred me back to my endocrinologist who, immediately, ordered labs and a more sophisticated CT scan to see what the tumor was producing and get an exact sense of its size.
A historical explanation
After gaining 80 lbs in the span of three months in 2007, a very large adrenal tumor was discovered and I underwent surgery to remove my left adrenal gland. The tumor produced abnormal levels of the hormone cortisol. Normally, only a portion of the gland is removed with the tumor. A year and a half later, the tumor had regrown and I had to have the remaining portion of the gland removed. Surgery on either adrenal gland causes the remaining one to stop functioning for months. I crashed from Cushing’s Syndrome to Addison’s Disease after both surgeries. I survived both surgeries thanks to oral steroids, but life was very hard.
During the second surgery, in 2009, a small nodule was seen on my right adrenal gland. At the time, I was told not to worry, that it is exceedingly rare for both sides to become active and end up necessitating removal.
Back to today’s narrative…
My endocrinologist called me last week to go over the blood work he’d ordered alongside a more specialized CT scan. The long and short of it is that I have Cushing’s Syndrome again and, with the size of the tumor as it is now (4cm), I need to have my remaining adrenal gland surgically removed very soon.
The impact of these developments, in the mid-term, is that I will have to slow down considerably to adapt to permanently having Addison’s Disease and depending on oral steroids for the remainder of my life.
This surgery is not elective. I have no choice.
A part of my preparation for life post-op includes removing myself from stressful environments. Since I won’t be producing stress hormones and the medications I will be prescribed really only cover one’s minimal usage of cortisol, I am making radical changes to decades of habit. I have unsubscribed from many of the social media and news organizations I’ve either participated in or followed for years; even decades. I will come back if and when I feel that I can handle things.
It is my hope that I will recover enough to participate again in social media. My first two experiences taught me that getting used to Addison’s Disease takes time. Knowing that John F. Kennedy had it and thrived gives me hope that I, too, will as well.
I will miss you all.