Thursday, July 24, 2008

Is observation and testing the same thing as giving a damn?

Following this weeks tradition of short notice screwing of EVERY SINGLE DAY, we had many emergencies today of which was not the least that a) Dr. Atwell-Pope ignored the instruction that she was no longer my neurologist of record. She called my GP to convince him that the Neuropsych unit where people with MS, Lupus, epilepsy and others learn behavior modification to keep their many symptoms (some of which are assumed to be stress related and thus bogus), in check and not constantly require attention from doctors or other medical staff was actually all about Neurological investigation (when all the literature FROM the unit says otherwise). And b) My GP decided he needed to speak to me today, this afternoon.

So I meanwhile was in my continuing quest to get another Home Care Nurse than Edriss, which it appears had never been done before. And the further I went, the more supervisors I talked to, the more you could have made ice over the phone line. First, CLIENTS don’t tell RN’s what they can and cannot do (Because Clients are usually 75 or so), and second, it was ass covering time. It turns out now that the head of the nursing section of VIHA has been added to tomorrows meeting (notified at 4:00 pm today, meeting tomorrow at 11:00 am). I asked if that meant we would talk about getting me a new nurse. The Nurse supervisor said, “All the parties will be present.” – and that is literally the ONLY sentence she would say. So fun, as I try to replace my nurse who has commandeered MY apartment for HER meeting.

Meanwhile my GP, because I had made a complaint against Dr. Atwell-Pope felt threatened, as I am “abrasive” and highly intelligent and would HE then have a complaint against HIM? I told him that of all the doctors who refused to treat me from sexual orientation to religious beliefs, I NEVER made an official complaint and I never expected to. Dr. Atwell-Pope had, in her own practice and now with her interference in my relationship with my GP (like this meeting for example) was causing a detrimental impact in my health instead of assisting in my healing. She had ordered tests, not to try and find out what was wrong or treat me but to prove she was right. This occurred even after her theory had been dismissed by her mentor, she continued in ordering the same tests repeatedly hoping for different outcomes and trying to stop all treatment from all parties, including my GP, because it would go against what her “instinct” told her a year ago. By the time this was all explained and everyone was okay, the talking on the phone for 7 hours, the week of exhaustion and the being in a very hot room made me put down my drink because “something was happening” (in EMT speak a “sense of foreboding”). Then I had a seizure. The Doctor observed (did nada to help me apparently – I was, um, busy, at the time) and Linda narrated what was going to happen next.

This made Linda’s day.

I feel like I have been repeatedly beaten.

The doctor has ordered an emergency CT scan. He will start me on pills next week. I spent a great deal of time not fighting the system in bed but Linda is happy because now the Doctor has SEEN, and he believes. Which makes me feel a bit like I am the miracle worker only in reverse, I have to create a disaster in myself, to make people into believers.

And starting tomorrow at 10:00, it all starts again! We have eight people in the meeting regarding care of my seizures. I told Linda I don’t know how I am going to stand the heat of being in a room with seven people. She said, that maybe (with a smile) I won’t be able to.

“You want me to have a seizure!” I yelled outraged.

She admitted that it would be very effective. I pointed out that it is VERY painful and that no, I cannot go around having seizures and losing days just to make points during meetings however USEFUL that might appear to be. Not to mention I don’t have control over it (though heat, stress, and fatigue are all factors).

Sigh, if this week ends, I swear, I am ripping out the phone because having a “week off” from my medical week which had two meetings a day and 5 hours on the phone minimum followed by ANOTHER week of medical tests (but this time, they are going to be “emergency tests for Seizures, including a EEG test after I am completely fatigued…..at night…in a warm room) Please, just let me write a damn postcard. Please. Let me watch a DVD. Let me send a gift. Please. Stop testing me and start CARING about me.

P.S. (1:55 a.m.) I actually did stay up past 1:30 a.m. and went to bed relatively content, a bit of my life taken back. To see how and why, go here

14 comments:

sarah said...

elizabeth, things sound so hellish right now. i am so blown away that in the midst of this, you managed to send me a fucking brilliant postcard! the sexy little writing lady with a gigantic phallic brush. good lord. thank you, thank you! you made a big difference in my crappy day.

i really hope that something helpful comes out of all these ridiculous exasperating experiences that you are having with the medical/"health" "care" world. christ.

sarah

Perpetual Beginner said...

Gah - the week you've been describing would put me over the edge into a nervous breakdown, and I'm able-bodied, not at all needle-phobic, and very used to dealing with medical anything (albeit usually from a different perspective). Why does it seem like the less endurance and energy you have, the more they want to require you to do?

Hugs from Indiana, and if any of your medical people come this way, I'll slap them for you.

Neil said...

Slap another complaint on "Dr." Atwell Pope. Ask the college of physicians to check her credentials; are they genuine? Professional misconduct is the least of her problems; SHE's the one who should be in the neuropsych ward.

I'm sorry that you had a seizure, but having one in the presence of your doctor should FINALLY give you some official credibility.

As for people calling meetings in your home without your knowledge or (especially) your permission, that's grounds for calling the police to have the intruders removed. On the up side, it would get Nurse Mengele off your back. On the own side, it would likely get you excused from home care permanently. So that's probably not a good plan; but you could Threaten them with police-aided evictin if the meeting strts go drag on too long (5 minutes???).

I have to admit that I'm waiting with anticipation for the day you report that Home Care has decided to meet in your home, and you have a doctor's appointment at the very same time. "We've called a meeting." "You can't." "We have." "I won't be home." "All the Interested Parties will be there." "You'll meet in the lobby and be charged with loitering."

I apologize; this is all rather too silly, I think. I'm tired.

Oh: anyone with migraines should read the August '08 Scientific American; new-to-me information that I found VERY interesting. Constant yawning can be a sign of a migraine!

Assure your doctor that if he treats you properly, and doesn't rely on his own misinformation and prejudices to treat what he wants to believe you have, he's safe. If what he prescribes is actively hostile to your health and safety, then he should start to worry about a complaint. But since he has seen your seizure, he should be more "on your side" now. I HOPE.

As for the GP standing helpless, I'd wager he's never seen a real seizure before, and honestly didn't know what to do. Tell him your rates are $25/hr for Linda's teaching, and for a limited time only, $90/hr for Resusci Beth. But tell him with a smile. Double those rates for the home care meeting. And say it without smiling.

At lest the next set of tests should be for something that really exists, if that's any consolation. Probably not...

Yay for Saint Linda the All-Powerful!!!!! Yay for the doctor finally believing you - he does, doesn't he? Thank Gods it wasn't in A-Pope's office. She'd have sen it as proof that you *don't* need emergency care.

Much love, many zen hugs and prayers for a peaceful night, at least. And for goodness' sake, prove to Linda how much you love her!!

Neil

Raccoon said...

Oh, she's in trouble now! The neurologist, not you.

Now, I've been involved in the creation of every care plan that involved me. And every care plan has required doctors orders for anything "medical."

Of course, all of the agencies have considered me to be a problem client...

yanub said...

From what you say, it sounds like you have handled the situation with your own GP very well, and maybe even gave him a small bit of confidence. Atwell-Pope must be an overbearing sort, to cause other doctors to question themselves so. GPs shouldn't be intimidated by specialists. Patients need their GPs to stand up for them. You must have handed your doctor back his balls (Was A-P keeping them locked up for ransom?) because this time, he recognized your seizure for what it was. It isn't like you haven't seized in front of him before, right? He just didn't believe what his eyes were telling him. I am sorry you had the seizure, but at least it went to good purpose. It would have been a real pisser to have it afterward.

Speaking of pissers, I hope you can get through your home care meeting without too much agony. Maybe you can have Linda decorate the apartment with blocks of ice. Even better, use them for seating your "guests" so that the meeting will be cut short.

SharonMV said...

Dear Beth,

So sorry that you have had to deal with such a life-sucking week. But finally, the right tests, some help with your seizures - for this I am very glad. At least if you had to have a seizure (pretty much a given considering what you've gone through), it was in front of GP. I hope his eyes have been opened and that this awakening of his will also extend to some action in other aspects of your medical care.
I hope the meeting tomorrow doesn't last too long and that maybe something will come of it to help you. Linda will be there I hope?

I had my IVIG today. My nurse had sick children & didn't want to risk exposing me to anything but she found a substitute nurse to come. I am beginning to think that the idea of changing nursing agencies or making me got to the hospital out patient center is my insurance company's idea. Well, now I have 3 more weeks to deal with the problem.

Will be thinking of you tomorrow morning.

Sharon

Heather said...

I'm with Neil on this one: file a second complaint against Atwell-Pope. It will help create the necessary paper trail, show the college that Atwell-Pope is reckless, and demonstrate that you are determined to see this through.

If paperwork becomes even more onerous, my guess is that you have a lot of folks around here who can help with initial drafting of the content from boilerplate.

Maybe you also need a friendly lawyer to send a cease and desist order or just to send the complaint in on a lawyer's letterhead. The letterhead bit worked wonders with my mother's GP when we need to get my mother's medication reduced. The GP ignored us, the day nurses, the geriatric nurse, and the geriatric doctor for a month: verbose letter on lawyer's letterhead got action in less than 24 hours.

saraarts said...

Ripping out the phone sounds completely appropriate.

The administrators of medicine, they lose sight of the fact that the point of their jobs is to help you not manage you. It's one of the things that makes me most crazy, too. It's a horrible thing to do to anyone, this lighting on fire of the resources such as strength and especially time, but I find it especially unconscionable when the patient in question is supposed to be terminally ill.

I could rant on and on about this, but my only point in doing so is to validate your feelings. Meanwhile, I wish you luck getting through it all to a place where you will get what you need, including time off from supposedly medical bureaucratic ridiculousness.

Gaina said...

Holy crap does that neurologist not read any medical journals!? If she had then she'd know that ME/CFS IS A PHYSICAL ILLNESS!!!

My mum had it when doctors would not acknowledge it even existed but thank goodness we (at least in britain) live in more enlightened times.

This 'behaviour modification', what exactly does that mean?

If I was in your position right now I think I'd be inclined to unplug the phone....and not plug it back in!

Laura said...

Beth,

What doesn't Atwell-Poop not understand about "You are no longer my neurologist." She has definitely gone too far this time. She is a megalomanic and seems to need to check into the neuropsych ward herself. Perhaps some ECT treatment would help her let go of your case and leave your GP alone.

Unfortunately, since she has taken it upon herself to ignore the complaint against her and the warning to leave your GP alone she needs to be taught a lesson. I would lodge another complaint against her, and perhaps even report her for harassment. But then, I have the energy to do such things.

I would definitely sit through your meeting with ice packs all over your body. Then excuse yourself to the bathroom or your den and sit for at least a half an hour to make them wait on you to cool off.

I do hope the meeting is productive and it isn't too taxing on your energy. I also hope that you can rest or do postcards for the rest of the day.

I hope that you got the list that I emailed you. Take care of yourself for the rest of the day.

Hugs,
Laura

Meredith said...

Um....
Maybe I'm naive but I've grown up on House so I generally assume that doctors want to do GOOD for you, darnit! And now they to these things to you that you describe... I'm sick of this. I'm sick of "doctors" that abuse you in every imaginable way and not concentrate on fixing your problems - instead concentrate on getting their money. It's disgusting. :-S

Wishing you the strength to get through this...

Love,
M.

em said...

I'm sorry you had another seizure, but I'm glad that you had it in the face of your GP. Lord. Perhaps he will believe you now. I understand why Linda wants you to have another one in front of the nurse convention too. Of course I also understand why you *don't*.

Hugs.

FridaWrites said...

High pain but good spirits right now. Just wanted to say hello and I hope Atwell-Pope realizes the error of her ways or that others do. Hope the meeting goes well tomorrow, sending my support.

Tammy said...

I'm sorry you had another seizure too. I'm sure that takes a horrible toll on your body. BUT...I'm kinda glad it happened in front of GP so that he FINALLY gets it! I agree with Neil, file another complaint against Neuro Bitch, and another when she bitches about that, and then a fourth one just for good measure.
I hope things go as well as they can with The RN From Hell. I got my fingers crossed for you. I just can't believe that they don't take patient wants over their ego trips. Lovely. I think I will quit bitching so much about the cost of my healthcare and insurance, and thank my lucky stars we don't have to deal with the nightmare of Canadian Healthcare.