27.9.06

I left my last entry on such a cheery note... You know, four is a number I really have never liked much anyway. In Japanese one of its pronunciations can be a homonym for death, and is thus considered bad luck or a bad omen by many.

Aside from personal and cultural stuff.... On the Glasgow Coma Scale (GCS or just Glasgow), four is not a number that one wants to score. The GCS is scored from three to fifteen, in 3 categories, based on stuff like whether the patient responds to pain, talks, is oriented, opens their eyes, etc..





I had been experiencing severe neurological symptoms for weeks, had had a bunch of infections (sepsis, pleural cavity, had a hemo/pneumo/junk-o-thorax.. After 7 surgeries in 8 weeks, my body was seriously in bad shape).. SO, they send in a new neurologist, who told me I was just having migraines, needed to pull myself up by my bootstraps kind of thing. (yeah, tell that to my GENETIC syndrome).. He accused me to my face of lying to him... Said to me with my mother sitting right next to the bed: "Well, MOTHER obviously seems to have an overactive imagination." <--- which was bull, b/c what my mother had been saying was all reasonable and supportable by fact and experience.
The pinnacle of his visit was when he told me it was "just migraines" all over again.. I demurely said, sitting on the edge of my bed, "I don't think..." And that was as much as I got out, of my sentence, because he walked over to me and put his face so close to mine that I could feel his breath and little drops of spittle hitting me as he spoke- He loudly and savagely said, "Guess WHAT?! I don't CARE what YOU think!! It's what Ithink that matters." He was gone and down the hall, and I was speechless- stuck to my room by 500000000 tubes and monitors.

This neurologist's visit came at a point when I felt desperate.. No one could tell me what was wrong with me or why I was so sick, beyond the surgeries and infections.. We had our hopes on him, that he would at least try. And instead of listening or 'healing,' he belittled and degraded..
I was SO depressed and felt so very hopeless, and more helpless than ever. I demanded to be discharged, and after some arguing and bartering with my neurosurgeon, I was discharged with the condition that I stay nextdoor.. Which was fine b/c my parents were already staying there.

Anyway... I went downhill. Christmas-Eve morning, I passed out and hit my face, blacking my eye and breaking open my lip. After that, it was downhill really fast.. I began falling that day, and by the end of Christmas Day could not walk at all..

How things progressed after that... It's all really fuzzy.. But I was taken to the ER in early January of 2006, almost totally unresponsive.. And that's where the GCS of 4 comes in....... and since then there's been so much, I just haven't been able to keep up the blog, and here I am one year later.. Diagnosed now with Lupus, overlap of Sjogren's syndrome, peripheral neuropathy, an as-yet unknown hepatobiliary issue.. and headed back to the hospital where I was only barely alive last year..

For now, I say goodbye.

4 Comments:

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Blogger peny113 said...

"For now, I say goodbye."

Hope you go back to the blogging world Bronwyn. This blog has been a source of inspiration to many. Thanks a lot. :)

Truly
Peny@littman stethoscope

5:02 AM  

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