Saturday, July 20, 2013

Thoughts of a pain-addled insomniac narcoleptic

My furbabies being snuggly together
Photo on the right shows my cats Serenity on the left (a grey medium hair tabby) and Bela on the right (an orange short hair tabby).  They are facing the camera, snuggled together, both looking sleepy with their front legs tucked under their bodies.  They lie on a light blue blanket.

It's 4:15am as I write this and I realize that so much of my public writing revolves around my spine-related issues, while much of my life is much more complicated.  It's true that part of the reason why I am awake is because I was in pain and my usual dose of pain medication plus muscle relaxant and supplements isn't allowing me to even doze off briefly.  But to pin everything on spine-related pain (whether bone, neurological, or musculoskeletal) is a half-truth, and I don't think I talk much about the rest of my complicated body.

There's a part of me that feels adamantly about being open about my physiological differences.  There's another part of me that worries that being so open about my body, my experiences, and my life will cause me future harm in the form of employment discrimination.  In the end, my personal narrative is pretty darn unique and I've never actually met another person that has my birth defect.

So, I was born mostly blind in my right eye from an optic nerve that didn't completely form (optic nerve hypoplasia) along with a pituitary gland that didn't form all the way (hypopituitarism).  My doctors' concluded that I had an aneurysm at the point in development where the optic nerves, hypothalamus, pituitary gland, and similar deep skull structures develop.  When I was a born, the optic nerve issue was obvious due to having lazy eye and I had doctors concerned that I had a brain tumor until I was around six months old (I still have to explain to new doctors that I didn't have a brain tumor as it's the most common cause of my interesting set of circumstances.

To make this more complicated, knowledge of what it means to have a pituitary gland that has never worked properly is still in its infancy as an area of medical inquiry.  The pituitary is the "master gland" of the body that works as the supercomputer that works with all the glands in the body to keep hormones circulating properly.  The part of my pituitary that is too small is the anterior section that controls growth, reproductive capability, metabolism, stress response, and others.  Related is the hypothalamus, a brain structure that communicates chemically with the pituitary to keep all sorts of bodily functions going in the fabulous cyclical fashion that human bodies usually exist in (like sleeping!).

Because of my hormone deficiencies, my body doesn't heal properly so my joints are hypermobile, it doesn't process food and nutrients well (which led to my gallbladder removed in 2003), the protective sheaths of my nerves don't regenerate properly (mimicking some aspects of multiple sclerosis along with decreasing exercise tolerance), and I've had chronic pain since I was a teenager (and exacerbated by car accidents at 13 and 17 and my later spine fracture and resulting spinal cord injury).  Because of my hypothalamus, I have mild narcolepsy with occasional cataplexy (my body doesn't get the types of sleep it needs so I'm usually exhausted and prone to falling asleep during the day).

A lot of this has been a part of my personal reality for most of my life, although some of these things had no labels.  Sometimes I just have to look at how much impact that one little blood vessel made in my life before I took my first breath.  I try to stay curious about my body when I can, partially because of my scholarly inclinations (I took a senior level biology course in Endocrinology while finishing my bachelors degree in health psychology to try to learn more about how my body functions).  The other part is pure self-advocacy. The average endocrinologist has never seen a person with hypopituitarism, and if they have, it was an adult with a brain tumor, not someone with pituitary dwarfism.  The average doctor in general practice or other specialty usually knows a little bit about thyroid function, but very little about the pituitary as a whole.

I have to know because I want to live the longest, fullest life I possibly can, which is a difficult prospect as there aren't many studies about people like me.  The few articles that do exist show shortened lifespans, particularly if the hormones aren't supplemented with costly daily injections that insurance doesn't cover, plus stress doses in case of emergencies and illness, pills that mimic the body's natural cycles....on top of quality of life issues like chronic pain and the inability to get restorative sleep.

In the end, this really just means that for a bunch of different reasons, some from birth and some picked along the way living life, I'm usually in pain and usually fatigued.  I don't sleep well even if I try to "binge sleep" because of narcolepsy and pain.  Sometimes my brain just shuts down for a microsleep when it's inconvenient.  It's just my life and I'm thankful for people that push past society's usual ableist norms (and help me push back against internalized ableism).

Off to listen to a Dresden Files audiobook in hopes that James Marsters' lovely voice allows for some much needed rest!  If anyone has questions, please ask....with a rare set of physiological circumstances (sometimes known as a "zebra," which is medical slang for a rare disease or condition) and perpetual intellectual curiousity, I don't mind talking about most aspects of my life (especially the sociocultural aspects of illness and disability).

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