Hello all,
Ten years ago I was still a regular mom to 9 kids married to "Superman", aka my brilliant and successful inventor, writer, musician, radio broadcaster, senior IDF reserve officer (and veteran of 3 wars including Vietnam), military intelligence consultant and charming as-all-get-out husband who never had a sick day in his life .
Then little by little, Superman began to unravel before my eyes. The changes were subtle at first but became more dramatic and frightening with each passing year. Every other day we brought our doctor one baffling medical problem after another: pancreatitis, fatty liver (he didn't drink), weight gain, depression, extreme weakness, muscle pain, panic attacks, sleep apnea....the list just went on and on.
For years we went from worthless doctor to worthless doctor and spent many nights in emergency wards. Yet nobody had a clue what turned a perfectly healthy 45-year-old man into Humpty-Dumpty after the fall.
He deteriorated to the point where I had to quit my job and be his full-time caretaker. If you saw the film "Is It B12?" the pediatrician's story in the beginning reminded me very much of my husband's. He was beginning to look like that doctor; only my husband wasn't in a wheelchair - not yet...
To make life more interesting, three summers ago our 16 year old son began having bouts of paranoia against me and my husband and behaving very out of character. Within two weeks he got weirder and weirder with bizarre memory lapses in mid-sentence, tremor and dementia-like confusion until one day he just collapsed in a "frozen" ball on the living-room floor and stayed that way for 24 hours. We freaked out and called an ambulance. The shrinks at the hospital didn't bat an eyelash and shipped our poor boy straight out to "Shutter Island" where he spent 9 horrific months drugged up to the max and acting like a zombie. When he finally came home to us after that hell-hole, there was no trace of the beautiful boy we had before.
The "wizards" who run that place decided he had "schizo affective disorder", which is just a nice way of saying your kid is terminally cuckoo. I never heard of that before - all I knew about schizophrenia was the guy in "A Beautiful Mind" who aside from seeing Nazis in the closet, seemed to have his act together a lot more than my wreck of a kid with Alzheimer's and Parkinsons together! Meanwhile the shrinks kept on with their mantra that the skeleton next to me looked "just fine" to them!
I didn't buy their bogus explanations and reassurances. I just wanted my kid back . But where did he go? And how did he disappear so quickly?
Something told me if my boy could change that fast, it means he wasn't that "broken" to start with. I was determined to find someone who would fix him.
No doctor or specialist was going to help me. Not unless I paved the way to the diagnosis for them . I could either make peace with the status quo , which meant deluding myself that the next yo-yo in a white coat who spouts trash knows something I don't, or simply bury my head in the sand and let them carry on playing Russian Roulette with my family's health .
I decided instead to create a new title for myself - I'd be a freakin' "Patient Advocate" . I'll spend every waking moment researching, writing, cruising patient and doctor forums, contacting specialists and figuring out the best way to gain cooperation from my GP.
I wouldn't let up until they're both healthy again.
- but I do still hang out here for two reasons - to learn when new information crops up - and to try and keep banging the drum 
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