Ch 1: The Background

Feb., 2010

During a fairly normal day at work, I felt a migraine coming on. I'm no stranger to migraine headaches; I've had them since I was less than a year old, and after almost ten years with a neurologist, they were predictable and controllable. This migraine left me running scared - it was in a different location, the pain felt different, and it didn't respond to my medication. When a second round of medication did nothing for the pain, I gave in and phoned my neurologist's office. Because my doctor happened to be out for the day, I was passed along to another doctor in the practice. Being unfamiliar with my case, the doctor suggested that I head to an emergency room just in case - he felt that if I was concerned enough to phone in, I should probably have it looked at. Also, Snowmageddon was scheduled to hit starting that night, so I likely wouldn't be able to get to the doctor's in the morning anyway.

So off to the ER I went. I phoned my parents, knowing that they'd be an hour-ish out, but I couldn't wait for them. I checked myself in - apparently, the trick to being seen immediately is to tell them you think your head is exploding out of your skull - signed all the damned paperwork, and was seen by the first set of doctors. After listening to my spiel, they told me their standard procedure for head issues was a) a CT scan, then if nothing odd showed up on the scan, b) spinal tap. I was in so much pain that I went "yeah, okay, whatever, do the tests so you can give me some goddamned paid medications because it hurts my head to breathe." By the time they finished with the "inconclusive" CT scan, my flustered parents had arrived. The doctors briefly explained their procedures to them as I curled back into the fetal position and tried not to move. When the doctors asked for my okay to do the spinal tap, I told them to go ahead and do whatever they needed to do and get it over with and get me some pain meds for fuck's sake. Dad wasn't so thrilled about the idea of the spinal tap, but a hospital's procedure is a hospital's procedure, so he okayed it. The doctors went and got everything, moved me about a little bit, got ready,...

And SLAM. OW. The needle went directly into my spine. Not the space, not the fluid, not the discs. My actual spine. That hurts far, far more than it sounds like it does - and yes, it does sound like it hurts more than you can imagine. As it turned out, the supervising doctor let a medical student perform the procedure. Obviously, never let a medical student do anything important on you. The doctor took over and did the actual procedure quickly and painlessly, and went to submit it for test. As he left, he told me to lie as still as I possibly could for the next hour while we waited for results; not an issue, I couldn't really move much anyway.

By the time the doctor came back with the results, my migraine had finally loosened its grip on me. When the doctor said that the spinal tap also didn't come up with anything, I decided I was just done with the whole damned thing and wanted to go home and sleep for two days. They really didn't want me to go, but I do NOT do well in hospitals with IVs stuck in me, and I absolutely would not stay if two tests hadn't turned anything suspicious up. As I checked myself out, they warned me that it was likely I'd have a headache tomorrow, so take it easy, and any headache would resolve itself within 48 hours. Whatever, I already had a headache, not like I'd actually notice! My parents took me back to their place to watch over me for the next day or so. It was evening when we got home, but I went to bed without eating, because I just wanted to sleeeeeeeeeeeeep.

Fast forward to the next morning. I wake up like normal at a normal time, sit up, go to stand up, and WHAM. I black out. My head is exploding. I'm screaming but nothing is coming out. I'm falling but I'm not moving. My mom runs upstairs (my dad still dealing with his broken knee, is hobbling behind), and I'm on the floor, passed out.

An Introduction

I've been thinking about starting a blog to detail what's going on in my life, but it kept escaping me - too much to do, my condition would temporarily improve and I wouldn't see the need, too sick - but now I realise that I need to do this. The illnesses and pain happening in my life aren't common and there isn't much research on them, except what arises accidentally. Any voice that can be added to this story and this condition helps. And if my diagnoses help others find solace or lead them in the right direction, well, then maybe something positive may come from my experiences.

The short version of me: I'm Sabrina, I'm 27, and I live in North Carolina. I live with my wonderful husband Patrick, a dog (Worf), and a cat (Keenser). I have a wonderful, close-knit family and the best friends anyone could ever ask for. I have a bachelor's degree and a master's degree in subjects I love. On the surface, my life seems as normal as anyone else's. Underneath, however, I'm so ill that my life is being torn to shreds, and there's nothing anyone has been able to do about it. I've been forced onto the sidelines of my own existence, watching as friends celebrate milestones and achievements while I can barely hold on for dear life. Every time I thought I was making progress and finally on my way to health, it all fell apart again.

So, for the next few days, I'll do my best to chronicle the past few years, in terms of both the physical / mental symptoms and all the doctor's visits / tests / exams / dead ends I've gone through trying to find an answer.

That implies that I know what's wrong. I don't really. No-one does. My health - my life - have turned into a labyrinth, but the monster is forever changing form and the exit is constantly moving. I like to think that there's an end to this, but I haven't been able to see it for an awfully long time. It's hard to see much of any future when all you can see is masked by exploding stars and spirals of pain when you try to move more than turning over in bed.