Trick Question: What is a downward Spiral?
Trick Answer: that new FLAX seed drink at Starbuck – wow, talk about a system flush! Seriously…..beware!
The other answer: Me and my health, so says the Linda
Linda says that in my need for extra sleep, 5 hour naps, in slowed speech, in slowed thinking, that I’m going down.
Except…except, we haven’t had time for all the ‘together’ stuff much less the talks about dying, and about us. Or we have and I don’t remember. Ignorance isn’t bliss, I can assure you, knowing that it takes patience and people reminding themselves about you almost all the time they are around you.
We need to have those talks, those times together.
Except the medicos have us again: I was exhausted from the doctors office visit yesterday so I slept five hours and when I woke up, I had three more doctor’s visits, and now four. I have to spent tomorrow putting as many manga on ebay and art books on Livejournal as I have the endurance to do. I haven’t even started a single template. Or resized a picture. But I need to have a nest egg, I want to pay off everyone I owe, I want to build up savings again and people don’t buy off ebay after Xmas.
Except I spent three hours talking to a doctor who wants a family history, who is having my mother in and I think it is more about having me in a chapter in a book than finding a diagnosis. He talked down to me; the type who has to be the biggest brain in the room. I thought he was a blessing until, I countered him, too far down the genetics path of perfect and imperfect and he asserted that he was NORMAL, an XY 46 perfect chromosome heterosexual male. Is that normal now? Then he said that I was brain damaged. No, not now, but because I had the genetic disposition for Bipolar Disorder, or because I had Dyslexia, or because I was an SMA carrier, or a Chromosome 5 abnormality. I would NOT have 46 perfect chromosomes. And now, with the field of genetic medicine, that matters.
Was I hurt? From a man who may have served on panels in BC to determine those ‘brain damaged’ in 1976 to be sterilize against their will? Yes. I didn’t need him to list the barriers of what everything from who entertainment is aimed towards to corporate structure to be reminded of everything that locks me out. I AM different. But am I ‘brain damaged’ because I take a pill supplement?
What does it matter right, because he wants to see me, on Monday, after we talked for three hours on the phone. But is he here to help? Every Neurologist he lists, he works with is an expert in dispensing “Conversion Disorder” (Neuropych major or minor) – known as, you not only get to be sick, but it is your fault too! Have MS? But that’s too severe for REAL MS, you must have “Conversion Disorder!” You don’t want to live a normal life, you want medical attention. Oops, that’s MS type 4. Okay but THIS MS person has Conversion Disorder, and so does that Epileptic, in fact so do ALL Epileptics (this is the literature not me), because any seizure that doesn’t show up on an EEG is a Pseudo-Seizure – all the Seizure with and extra side of distain and no help (except some therapy). It is the ultimate cure, from MS, Lupus, CP, all can be 'helped' by doctors, by BLAMING you...for your own good. My, how big your teeth are doctor. Of course the number of seizure disorders has increased from 4 to 1,500 within Canada and I haven’t found anyone, Doctor or otherwise who could name over seven but boy can any doctor call a ‘pseudo-seizure’.
I told the genetic neurologist over the phone that I fainted in my teen years, “Oh yes, Teenage hysterical” he stated as the case. I tried to explain that no actually, there were many factors but no one could, “Right, Hysterical teenager!” Does he know I was an anorexic? Or that I had Vagovascular syncope during those years? No. He had a word, “Fainting” and an immediate response, “Hysterical” – because I have a damaged brain so everything must circle that drain right?
He tells me my records are sealed, then in discussion I find out what he tested my father for. Find out he offered my father medication. I call my father. “Do you know the genetic test results?” my father wants to know; he hasn’t gotten a copy of the results yet.
Patient doctor confidentiality until he needs to prove he is the smartest in the room.
Who gets my story when he is pissed off or proud of himself, or just something to tell at conferences? “I wish you had been here two years ago.” I said, “I don’t understand why no one doesn’t write a book about my family.”
“About that..” he says, “We’ll talk on Monday.” I find out my mother is booked to talk to him too.
I have to work, to list, to work, to list, then to have three doctors appointments next week so far. I went to badminton tonight, without a nap because I talked too long. I had seizures later. I lost another two hours. But I went to badminton and I sweated. I literally, every time I sat down to pee, had blood pour out of me for six days, and the “GP” didn’t want to hear about it – she deals with the big picture, the referrals, or not (As not one completed yet). The geneticist tells me he only finds a diagnosis in 30% of patients – and those are mostly ‘learn to live with it’
The thing about being ill and getting sicker is that the more you don’t make time for it, the more it doesn’t give a damn about your plans. All those appointments, they all want me to be something but I don’t know if I can, not today, not tomorrow. Are any interest in the me?
He was a doctor 11 years when doctors in Canada were saying homosexuals were incurable sexual predators, and the police were locking them up.
11 hours ago