Tuesday, February 2, 2016

You are a Case Study.

You are a case study.  At least this is what almost every doctor I have come across has told me. Endocrinologists, gastroenterologists, neurologists, women's health doctors, pediatric doctors, nephrologists, geneticists, TMJ specialists, ER doctors, rheumatologists, audiologists, neuro-otolaryngologist, high risk obstetrician's and NIH endocrine-reproductive specialists. What do all of these even mean?

A little about me. I'm Riley. I live in Washington, DC.  Yet, I strongly dislike big cities. I have irrational fears of sidewalk grates and spoons (don’t ask). I'm married to an engineer (enough said) and I have a full time job, which like most people in DC, I can't talk about.  Oh yeah, and I have congenital hypopituitarism, (what the heck is that?) which has been my world since before I could talk.  I guess that’s what I’m writing to tell you about, so here it goes.

A little background; the pituitary gland is a pea sized protrusion at the base of the brain which controls important body functions and the hormonal system. These functions include growth, thyroid, sex, and adrenal hormones among others. All play an important role in functioning and having any quality of life.

I was born, unbeknownst to anybody at the time, with a very small and dysfunctional pituitary gland. Before the doctors figured out what was wrong with me, my miniature pituitary gland was raising a lot of issues that nobody could explain, leading to lots of tests and failed diagnoses.  Finally, at 15 months old, my father’s chiropractor noticed that I seemed to be falling off the growth charts and recommended that I be tested for a growth hormone deficiency.  Seems obvious, right? I mean, I was at that point, walking and talking but looked like an infant

Turns out, the chiropractor was right [Probably the reason my father, to this day, strongly recommends that I see a chiropractor for all my medical issues].  Finally, after hours and hours of blood tests and MRIs of my brain, an answer!  An underdeveloped pituitary gland.  

I was placed on synthetic Human Growth Hormone to replace the hormones my dysfunctional pituitary gland was failing to produce. At the time, this synthetic version had only been in use for a year – the long term effects still remain unknown. Shortly thereafter, I was diagnosed with Hypothyroidism and years later Hypogonadism. Unfortunately, Hypopituitarism is often progressive, gradually appearing and worsening over time. I live in fear that one day my adrenal function will fail or that because of my lack of hormones I will never be able to become or sustain a pregnancy.

This was a journey my parents had to live in the beginning but has transitioned to my thoughts and fears.  A journey that has taken my life and flipped it upside down.  And as time goes on, I’m only affected more and more by this pea sized "protrusion" in my brain.  It always seemed crazy that such a small part of one's body could reek havoc on some of the most vital systems in the human body; yet just looking at me, no one could say “there is something wrong with that girl”. 

I like to think that I am fearless, but in all honesty, the unknown of it all is scary. The unknown is my life, my body, and what it will or will not do. The phrase I hear the most but like the least from doctors is "I don't know". Well, I would rather know. Tell me I can't have kids. Tell me I'm not right and never will be. Find out if what you think I have, I actually have. Figure it out, if you can't, find someone who can. Work together, please. From the day I was born, I have been faced with the unknown. Being a "case study" was scary and continues to be.

I want this blog to reach people.  To show strength through struggles, power in possibilities, and love to those suffering in and through anything. It won't always be about my medical struggles, but it will be a platform in turning to the one truth we have in our time here on earth. 

"My flesh and my heart may fail, but God is the strength of my heart and my portion forever"  
Psalms 73:26

1 comment:

  1. You're so beautiful, Riley! Your strength and faith continues to be such an encouragement. :)