My fight like a girl story begins directly from the womb, but I wouldn’t have to fight seriously until I was 10. I was born with a rare pituitary condition called septo optic dysplasia which caused my pituitary to not be able to keep up with my growing body. I was diagnosed with growth deficiency at the age of four and started growth hormone shots.
When I was older, between the ages of eight and 10, I was getting a bit heavy for my short frame and that’s when they diagnosed me with hypothyroidism. Between the ages of 10 and 15, I had some very scary life-and-death experiences with Addison’s disease and adrenal crisis which led to seizures and actually “dying” a few times. When I was older, I started female hormone replacement. Not for it’s regulating my system but more because the medication for Addison’s disease eats bones, and calcium and vitamin D are better absorbed with female hormones. I did have significant bone loss already. I take massive amounts of meds daily to replace all the hormones that I do not produce on my own. So hug your pituitary’s people! It’s a little Lima bean shaped master gland that is directly in the middle of your brain below the roof of your mouth.
My fight with fibromyalgia and chronic fatigue syndrome started about four years ago but I’ve noticed through my own research that many people with pituitary conditions also end up with chronic pain issues. I had to give up my amazingly wonderful work with people who have developmental disabilities, which is the biggest struggle I’ve had to face. I’m coming to the realization that it’s a full time job being a professional patient and advocate for myself!! Being different, having to fight harder for what I want, having to communicate in different ways for what I need has taught me to be a stronger person, and a more compassionate person towards other people who are facing struggles in their life.
I also have been diagnosed with high functioning autism which isn’t an illness but affects my day-to-day life, sometimes causing pain and making things difficult. I am very sensitive to noise, smell, and touch. Autism is very common with septo optic dysplasia, as are various other learning disabilities because we are born missing part or all of the mid-line of our brains.
There is nothing I can’t do, sometimes I just have to do it in a different way than others would.
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.