Tumbling Off Rock

of lanugous & translucent flesh

raefox:

For the past 15 years, I’ve been (intermittantly) bringing myself to doctors trying to determine what was wrong with me. I’ve discovered that this may all be a case of long-term effects of my premature birth.

I was born in 1976 at roughly six months gestation and weighed 2lb 6oz; soon to drop another 3oz. It was supposed that I’d not survive, but that if I did it was assumed I’d do so with a whole host of mental and physical impairments. However, all seemed well. I was one of those genius kids, reading at a 4th grade level when I was in kindergarten… always well behaved, polite, happy, without temper tantrums, and seemingly healthy in every way.

I did fail at ballet and fall on my butt… could never get the coordination together to swim well, or learn to play instruments (violin, piano, recorder, all I failed at)… I was always covered in bruises… it took a very long and frustrating time to teach me to ride a bike… but I was an active monkey of a child, running about and climbing things.

When I was a kid, they discovered scoliosis. As a teen, I was constantly told that “scoliosis doesn’t hurt”, which simply wasn’t the case, and I constantly had muscle spasms and spots of numbness on my back.

Puberty suddenly brought with it constant sore throats and sickness. It also brought crazy circadian rhythm, where I’d come home from school, go to bed, wake for dinner, and stay up all night (a schedule I’m still prone to fall into).

Then at 19 the real health issues began. Panic attacks exploded, I suddenly started going crosseyed (which rapidly worsened), my right arm started to ache often. Soon after, the full blown neuropathy gave me stabbing pains in all my extremitites, my whole right side began to weaken and ache (and it continues to do so), and a gynocologist told me she’d never seen hormones so out of whack. Depending on the MRI report read, I may or may not have an abnormality with my pituitary, but an ultrasound did determine that I’ve polycystic ovaries.

My teeth are shot (I’d 25 cavaties filled and a tooth pulled when last checked 4 years ago), my rheumatologist says I’ve prematurely aging joints, I’ve got three (to five) bulging discs (which doesn’t explain the right sided weakness) and my right eyelid and brow are starting to droop. I’ve got wacky insomnia from thinking too much, which is offset by sleeping for days at a time when my intermittant low-grade fever-of-floppiness decides to resurface (which it does often). I suppose that would indicate some sort of auto-immune disease, but thus far, I’m without diagnosis.

I’ve been tested for MS three times, for Lupus, for Lyme… I’ve lost count of how many MRIs and Xrays I’ve had. I’ve had eye-muscle surgery to correct the turn in of my right eye, but it just faded right back to it’s previous position within a few years.  My left eye too, has started some wierdness, and it’s highly possible that, as a premature baby, I may have suffered damage which is resulting in retinopathy (of prematurity), and possibly glaucoma.  My neuro-opthamologist, seen for the first time two months ago, is the first doctor who suggested that my problems are likely complications of my birth, and that I’m probably just “wired differently” and will never be diagnosed with any one cause.

My visual comprehension is hit or miss, and I’ll often not notice something I’m staring directly at, and yet, I’ll become hyper-aware of unbalanced or asymmetric space, or slight variance of color.

There’s all the psychological issues, too…

I’ve grown, these past few years, to break into tears easily at the small events that crush my fragile sky-ship of happy. In interpersonal relationships, however, I’ve always been rather stoic, and it’s rare that I’ve ever been “out-Spocked” by someone I’ve been dating… I’m usually one to call things off in a detached way for distaste of clingy behavior (seemingly a common trait amongst “adult preemies”), so I suppose I’ve suffered some of the resulting psychological side effects of the lack of mother bonding during infancy that so often occurs.

I’ve noticed an almost Aspergic tendency in my lack of ability to read certain situations, especially those of a sexual nature. I just don’t pick up certain cues. No matter HOW much I an intellectually aware of their existence, or recognise the obvious in retrospect, certain subtle modes of communication are completely lost on me.

Neurolgical/psychological issues run in my family; things like schizophrenia and Tourette’s and depression and OCD issues…. So i suppose that paired with my low birth weight explains the rampant agoraphobia and OCD and ADD and manic depression?

The pain-level, body functioning, and general ability to deal with life comes and goes, and paired with my vision issues, I’m currently applying for disability. I don’t want a free ride; rather, I really need to figure out how to survive without being a burden on those around me. I am in great need of health insurance and I can’t seem to keep it together to maintain any coverage myself.

Everything I’d once looked with fascination at or hope towards is fading into the mists of implausibility. I’d always imagined myself an artist, or doing something very physical and tangible. I liked wood working, climbing, building, painting. Being a day laborer, or restoring a ramshackle house from scratch were attractive activities to me. I used to read while walking down the street; read a novel a week… I used to draw constantly. Even just working at a cafe again somewhere would be amazing… That’s all disappearing away.

I’ve been plagued with issues all my adult life, without any diagnosis, any answers, or without the majority of people in my life taking me seriously whatsoever. Most family just seems to find me lazy /crazy, and most everyone else tells me “everyone has problems. suck it up”.

If this, my preemie birth, could be the root cause, I’d at least be able to stop looking for answers. I’d at least be able to grow cold to the doubters and naysayers.

(I’ve reblogged this so I can direct link it. No other reason because I  assume you all follow the original tumblog anyway.)