Thursday, November 19, 2009

Hit by Normal, the medicos begin worming in

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.

He’s ‘Normal’.


JaneB said...

Hugs. Medicos (especially insecure, MustBeBiggesatBrain ones) can be more exhausting than the disease! I'll email soon - keep taking those naps!

One Sick Mother said...

Yeah that doc sounds like a real prize.

I bet I can name more than 7 types of seizures -and all this without cheating. I am going to use Google to find the correct spelling for some terms, that is all.

"drop attacks"
complex partial

hypo/hypernatremia (basically, any electrolyte imbalance can result in seizures)

seratonin syndrome
seizures associated with vasovagal syncope and other types of dysautonomia
GLUT-1 deficiency (cerebral hypoglycemia)

What have I got here? 20? and I wasn't really trying.


wendryn said...

*HUGS* (very gentle ones!) for you and Linda and Cheryl.

I'm sorry there isn't enough time right now for needed things.

I often wish I could come up and smack some sense into the doctors. Not that doctors here are necessarily better, but there I'd know which ones ought to be smacked! :P

I'm glad you sweated. I'm sorry to hear about the blood. I'm still here, even if that isn't much right now.

I'm glad you are getting some sleep, at least, and I hope it is restful!

FridaWrites said...

lI was getting more and more wide-eyed about the conversion disorder neurologists until you showed the picture of Red Riding Hood--that cracked me up. Perfect. I feel that way with some doctors too.

I hope he wouldn't have been one of those who would have harmed homosexuals or people with brain damage. It's strange that he brought that up rather than the autonomic issues. In the US, not very many of the doctors are liberals and many are highly interested in money--I think that's changing over time as the profession has become more diverse.

It must be really difficult to wait for genetic test results and family medical history.

Baba Yaga said...

about the neuro, Run Away.

oh, that may not be viable. (sigh)

your health, or less-sickness, is more important than ebay. part of coping with being ill is getting ruthless about which Have Tos one allows to be real.

can I be a bit ruthless for you? anything you think you may think you owe me (do you think so? well, just in case), you don't. & if you did, I'd rather you paid for it in looking after Beth than in any other coin.

Cerus Sphinx said...

That Neurologist sounds like bad news. I hope you can find a way around him.

As for "Normal" who cares? There's so much more important things than being "Normal". And many people are abnormal in some way - its what makes us work - as a whole.

"Hysteria"? Really?!???

Kate J said...

This "Dr Normal" sounds just the sort of doctor you don't need, only cares about your "interesting" symptoms so he can mention them in a book, or a lecture, or his next research funding application. It's a Catch 22, because if you don't co-operate, then you're labelled as a difficult patient, or "in denial about your condition", or refusing treatment. If you do co-operate you just get sucked into his agenda, when it sounds like he's already made up his mind about you. Not good. And do I gather that the GP who seemed so promising has also turned out not so good after all? Is this a surprise? No. Not at all. But I'm sorry to hear it anyway.

But having heard very similar stories from a friend in the US, and several in UK,(including one or two who are doctors themselves) I don't think it's a function of the Canadian healthcare system particularly, just the way that the medical establishment works. Not an excuse, it's just just vested interests defending their own.

Hope you and Linda find a way of coping with being trapped in Dr. Normal's ego-trip...

Love & peace to both of you

SharonMV said...

Dear Beth,
I'm so sorry that your GP is not actually treating you for the bleeding or other problems you are having now. She may still come through with some help/referrals for you. I know it's hard not to lose hope. I know it's terrible to think of being thrown into that medical merry-go-round again & to deal with the arrogant sons of bitches encountered on that ride. But maybe it's worth it to see this neurologist once. If you are brain-damaged that is a physical condition, not a psychological illness. I don't understand his logic. The fact that he is also seeing your parents will make it more painful for you to deal with.
If he does find a genetic illness, it could be of help to you even if there is no specific treatment. If you have a dx, other doctors may be more willing to help you & treat your symptoms (better pain relief & help with thyroid, etc). He certainly sounds like very arrogant man, but maybe he does have a big enough brain to actually find something out. And maybe he has moved on with the times & advances in medicine. A difficult decision for you. I know you don't want to use your time/energy going to an appointment that may lead only to disappointment.

I hope the downward spiral stops or at least slows down. I love you & wish i could do more to help. E-mail me if you want to "talk".


A Bear in the Woods said...

insecure doctors on ego trips are annoying.

Sleep all you need, the heck with the doc's.

Olivia said...

This post just made me so sad. Then angry. I am so lucky not to have first hand knowledge of whether the doctors are similar in this country. But I know I'm likely to, one day.

I agree with Baba Yaga - prioritise sleep and time with Linda over ebay. I'm heading to paypal right now, hope that will help.

e said...

Prick...I've run across a few of those...Avoid if you can. I mailed a card with stamps and something extra today, and got yours, too.

Thanks so much for the postcard from Hawaii Volcanoes National Park.

I'm still trying to work out which version of AnyDVD goes with my system.

Take care of yourself and take all the naps you need.

yanub said...

So there I was, in my Maidenform bra, when I suddenly wondered, "Why in tarnation is Beth going to give that doctor any more time than he has robbed from her?"

This guy likes to think he is Oliver Sacks? From what I have read, people find Sacks to be personable, even if they might feel used. This guy isn't even personable, and you already feel used.

The GP---well, at least you have someone to collect your paperwork in one place, I guess. Small victories? Yay. Or something.

rachelcreative said...

Finding your doc encounters quite depressing - goodness knows how it would feel to be the subject of them. So many hoops to jump through for the same old lack of treatment.

I hope you're not on a downward spiral. That you can have the conversations and the together time.

FridaWrites said...

I keep forgetting to respond to all parts of this--you definitely do not owe me anything back and it would hurt my feelings if you repaid me in any way at all. The gifts you have sent I treasure more than anything, and I hope you get the (modest for our means right now) package we sent this weekend. Hubby couldn't get it in the mail Mon. but it went priority.

And the hysteria label--that is so 19th century. I'm surprised anyone would use that anymore to describe anything. What next, the wandering uterus theory?

I couldn't name the epilepsy types off the top of my head, but I certainly recognize most of those OSM lists out--good job. Yanub's Maidenform and Oliver Sacks comments cracked me up, too--you have great readers.

Kate J said...

It's me again, just thinking about what is "normal" - when I worked in mental health (for a radical project working with service users and survivors) we used to have posters up, asking "what is normal?" with all sorts of people who had mental health problems, but who had real achievements, both large and small. The message is that there is no such thing as normal. I really believe it, too.
I don't know if you have those very annoying BlackBerry ads on your TV, the ones that say "Like is watered down love"? Well, I reckon "normal" is watered down weird, watered down creative, watered down interesting, watered down challenging.
Proud not to be normal! Wear it with pride.
Love & peace

Jon said...

I dislike and distrust doctors. I do not like being turned into a diagnosis. I often feel I am being blamed for my illness. I find that doctors often want to treat the complaint they find most interesting rather than the complaint i find most distressing.


Jon said...

Oh and I forgot to mention the whole concept of normal. God that Idea creeps me out.

Good luck.

Raccoon said...

If it weren't for the fact that you need drugs, I'd say "forget them all!" The doctors, I mean.

Elizabeth McClung said...

Raccoon: With them more and more in my head stopping me from sleeping - I am so in agreement,

Jon: Can I use that for a T-shirt? THat sums up my relationship so often with doctors, where they will forget to even be the specialist if they are obsessed about something medical - OMG! You are like they talked about in the textbook! They aren't focused on what is causing the problem, just what interests them - brillant.

Lene Andersen said...

Oh, honey. Just makes me want to cry. Or throttle someone.

I'm curious... how can brain damage be conversion disorder? Isn't that a sort of mutually exclusive deal? Nevermind, not even going to try to make sense of that idiot.

Are you hoping he might sign the IVIG thing? If not, have you considered just not playing along? If you can get something back from him, go for it, but if not, why not tell the damn medicos that unless they can actually help you in some way, you have better things to spend your precious energy (and your life) on?

Neil said...

You're not "normal," dear. You're lesbian, extra-tall, left-handed (I think), and probably other things I don't know about. Those are all, non-"normal" traits, aren't they?

As for Dr. Perfect; if he has NO abnormalities, then HE is the better subject of a conference paper, not you. Does his nose curve to one side? If it does, he's normal. If both his legs are the same length, and both his arms are the same length, and his penis is straight, and he has perfect vision, no back troubles, etc, etc, ad nauseam, you could ask to write that paper about him. Ask to test him, measure EVERYTHING about him; does he have "normal" bowel movements? If he never gets sick, then he is definitely not normal.

And if he thinks he is, it's all in his head.

Sorry for the rant, but that's normal for me - at least I manage to tone MOST of them down before I post!

I also apologize now for not being here much lately and for the foreseeable future. My beloved is scheduled to lose her right breast and a couple of lymph glands on Tuesday, and since I'm married to her and not to you, she takes precedence. (C'mon, laugh with me, folks. Or maybe for me.) I'll be helping her adjust to this new, exciting opportunity (yeah, right) as she takes up life as a breast cancer survivor. We are optimistic, and we are relying on great amounts of humour to see us through the next few weeks. That and lots of love.

Love and zen hugs,

yanub said...

Neil, I will be thinking of you and Lady Neil. May her surgery be the beginning of health, may your bonds deepen, and your days grow brighter.

FridaWrites said...

Oh, Neil, I'm sorry to hear that. Please give my best wishes to her. Your family is in my thoughts. Please take good care of her.

And take care of yourself, too, Elizabeth--I am anxious for you that you have to deal with this dude again this week.

Neil said...

Beth dear, I'm sorry, I've realized that what I said may have unintentinally hurt you.

When I say that you're a tall, left-handed, etc, lesbian, what I *should* have said was that all those traits together, if not separately, take you out of the statistically *average* range for females.

What I meant was.. well, never mind. My brain supplied the wrong word, and I should have thought more carefully before hitting the send button.

Again, I didn't mean to offend you or anyone. And I'll shut up now, before I put my foot in it again.

Love and more zen hugs,

SharonMV said...

Neil,will be thinking of you and your beloved. Hope the surgery goes well.


SharonMV said...

Dear Beth,
Thinking of you & hoping that you're doing OK. Will e-mail you soon.


Raccoon said...

Neil, does your better half practice archery?

Sending calming thoughts your way.

Baba Yaga said...

Glad you updated, Beth. Was getting a little concerned...

Neil - will be thinking of you both.