When I was diagnosed with adrenal insufficiency just over a year ago, our world was turned inside out. Suddenly, we had an answer for why I had been so sick, but a whole slew of questions. What caused it? How would I feel better? WOULD I feel better? Why me?
It seemed like every corner we turned, there was another question. For every answer found, several more questions came. I struggled with oral medications, constantly suffering from low cortisol symptoms I couldn’t control, and increasing doses of steroids just to be able to function.
Eventually, I heard about how several people have begun to use a modified insulin pump as a method to administer solu-cortef. These near constant infusions of steroids allow patients who are otherwise unstable to have greater control over their steroid dosing and symptoms. Many even become able to maintain lower doses of steroids for daily use, which helps to lower the risk of side effects like weight gain and bone loss.
Now, as I’ve spent more than a year learning about this mountain of a rare disease I have to maneuver every day, I’m finding that the world of advocacy is often overwhelming.
With no understanding of why oral medications don’t work for me, I’m resigned to six injections a day of solu-medrol, or methylprednisolone, just to maintain stability. My endocrinologist has no experience using an infusion pump for cortisol, and struggles to get in touch with one who can guide him through the process, from prescription to maintenance.
My ever growing mountain of used insulin needles feels like it will bury me alive, though it’s the only thing that keeps me so…
Now that I have a laundry list of diagnoses, which keeps growing, I’m learning that it isn’t any easier on the other side of diagnosis. Yes, I’m diagnosed, treated, and alive, but it often feels like no matter what I do, it’s always an uphill battle in front of me.
For now, I focus on gathering resources, making contacts with similar experiences, and hoping that I can just continue to put one foot in front of the other, taking one day at a time, until I reach the peak and can just enjoy the view from the other side.