Friday, February 22, 2008

Conflict: care, disability and bullies

I do not do well with conflict and I do not like conflict. This may surprise you since I am calling up Fire Inspectors (after waiting THREE DAYS), I am exposing Triumph (Hey, when someone treats me like a lab rat, I strike back!), and I talk back to medical specialists. But having said all that, I WANT a calm life, I want a nice part time job where I am liked, a quiet apartment where I have friends and to be treated with respect. Most of the conflict recently has been around being treated worse than most people would treat their enemies and having people consider it normal because I am disabled or in a wheelchair (how many of you would really make someone you don't like CRAWL for long distances?).

Today, the alternative Victoria paper did an article on how the Fire Inspectors can’t levy any fines or ensure tenant safety and they mentioned me as an example (and printed the picture of the notice I put on my door). Well, my manager Fran, as I was showing a new care giver the laundry room was at the end of the hallway with the paper in her hand and blood in her eyes. When she saw my care giver she backed off but when my care giver came back up she said that Fran had followed her in and was complaining about scratches on the door on how I must have caused them and now SHE would have to paint them. Then tonight, the assistant manager, who we have had good relationship with for over a year and a half has turned sort of icy (and rude) and now we decided we need to meet her tomorrow to find out if it was just a bad day or if there is a new and real problem. I just want to live someone safe, and quiet and where I can come and go. Do I make a stink that our elevator always misses the floors by a few inches? No. Or that the laundry room has a little step up and the narrower door than my bathroom door? No. I can deal with that, I can go with the flow. When Linda came home from work Fran gave her the “wouldn’t it be nice if YOUR head exploded” look too (and Linda says, "She virtually snarled at me"). But I have decided that we should have a meeting with Fran AND the owner (or representative) because all we wish for is basic tenant rights and to be able to give them money every month. I would think it would be in her best interest to make sure that quiet and dependable tenants whose checks don’t bounce would be able to come and go with ease and everyone is happy.

Then there are the appointments. There is usually SO much conflict with each appointment or a waste of time and energy that just the word “appointment” is full of negativity. I have another appointment which was made today with the Neurologist Dr. A. The same neurologist that originally confirmed my GP’s diagnosis that I was suffering from PTSD. Later who concluded I DID have autonomic failure but when she said she needed to find out what test there was for heat intolerance and I would pull out a sheet saying “It is called XXXXX and it is done in Vancouver.” She would throw it in the trash…in front of me. Then she couldn’t be reached for over four months. Now, after the Vancouver Clinic has said I have to be prioritized, it turns out that the head of the clinic was her teacher and NOW, this week, once they decided I NEED to go to the clinic she is saying that as she has been trained by that teacher, SHE, Dr. A., is qualified to do the tests. This would be the same neurologist, Dr. A., who said my “neural system was perfectly intact” though the conduction test has now proved it is not, and now SHE wants to the follow up tests? Do I see conflict? Do YOU see conflict?

Then we have the heart specialist who refuses to see me because I have needle phobia and won’t obey him, so he won’t treat me or order tests. Except now he has Dr. A. on his back saying, “Hello, she is probably dying and do you want to keep your medical license?” (I can only imagine what one needs to say to a heart specialist to make them do things quickly which doesn’t involve dynamite: Or as the nuclear medicine techs said when I said, “Have you ever met God, my heart specialist?” And they laughed and say, “Oh YES, we have met cardiac specialists….”) So, the specialist is STILL saying that my needle phobia can be cured with a couple valium and my GP is saying, no we need an anesthesiologist. When I have the meeting with the Cardiac Specialist who told me, less than three weeks after an epee competition and less than three months after going to nationals that I was passing out and had hypo-tension because I was lazy and sat around on the couch all day, do you think there might be conflict? Do you like being told your problems are because you are lazy and thus he is not going to even bother testing for them. And then, almost a year later, finding out that you are not lazy, you are dying, you STILL can’t get an appointment to have heart testing when your heart is failing, might there be conflict?

When I found out today that the reason RN manager H. from Juan de Fuca resisted my getting Task 2 for oxygen was because every worker who works with someone who has a Task 2 gets paid more money (as in, make sure people don’t get task 2 and you save the company money), did I feel the six months and 60 hours of meetings were about my care or about being a “good company manager?” Why is the RN, the head of the LPN’s also the person who denies care in order to keep the company in the black? Is it like those doctors who spend all day denying coverage for HMO’s – what part of their oath is covered with that?

I just want a life where people might come to my aid at the sight of obvious injustice as I do when I see it in other’s lives. I don’t want to be at war with people because if I am not, then they are risking, not my opinion but the care which continues the support of my medical condition. Do I want a noise row with neighbors if I need to sleep? Does stress affect my strength and pleasure of life? Does knowing that every time I leave my apartment I have to carry a recorder in case I run into Fran make my life better or instead produce more stomach acid? And honestly, I DO NOT want to file a human rights complaint against Fran. That is simply because I don’t want to spend a year or what strength and time I have proving what I know, that she has some issue with disabled people (maybe because they might chip the paint), and that she is a bigot. Why can she not just leave me in peace?

Okay, that was a bit of a rant and feel free to add your own; it is just, when I was able bodied, I felt more secure in facing off against bullies. But now, Fran wishes to evict me or move me to where she can bully me BECAUSE I am sick and weak? That is twisted. Specialists and Care Companies care more about profit and their ego and not looking bad in front of their old teacher than the patient who is in desperate need of care?

I am just tired. Tired of being afraid. Tired of another meeting, another conflict, another blaring sound attack through the wall, another glare and stare and blocking my wheelchair, tired of it all. But it seems, the only victory they will accept is…..what? My death? I was not born a bully and I do not like having to say, “Back off because what you are doing is illegal and I WILL file a suit against you.” And I don’t like having to do it EVERY WEEK!

16 comments:

Katrin said...

"But now, Fran wishes to evict me or move me to where she can bully me BECAUSE I am sick and weak? That is twisted."

Yes it is twisted. It is also, pretty much THE definition of 'bully' at least in my experience. They prey on the sick and the weak (or those they think are sick and weak- physically or mentally) I swear some of them justify it somehow by that whole 'survival of the fittest' philosophy either consiously or unconsiously. They are just trying to 'thin the herd'. Ugh.

And the medical beaurocracy as a whole is just royally screwed up. There are a few docs who will underhandedly try to screw the system as much as the system is scewing them and their patients and care, but for the most part, again IMO, I've found they realize it is easier to sumbit than fight the all mighty dollar (and HMOs).

Sorry you are having to fight so much. What happened to the 'not fight but resist' thing :-) Though in this area not sure how far 'resistance' would get you, seems you've tried it.

FridaWrites said...

It's good that you carry a recorder in case of Fran abuse, and I'm glad that the newspaper printed something about the issue.

I'm pretty inactive and sit on the couch all the time and I don't have hypotension or pass out--that theory just doesn't work. Good that your GP is sticking up for you with the cardiologist. But terrible that some of these doctors don't do what they should unless someone's looking over their shoulder and calling them on it. Throwing paperwork in a trashcan? That's wrong!

cheryl g. said...

When I was an EMT we had a joke: "What happens when a Cardiologist takes viagra? A: He gets taller...

I wonder if the building's owner (Fran's employer?) is really aware of what Fran does. I also wonder if the owner is aware and part of Fran and the Asst. Manager's hostility is because Fran got called on the carpet (so to speak). I would bet that if Fran gets chewed out then she is the type who would turn around and take it out on her subordinate.

If you want an advocate who is willing to get in Fran and anyone elses face and cite Canadian law at them until their heads spin I volunteer. I'll start boning up on Canadian law.

What I want for you sis is a respite. A looong period of time with no conflict, no appointment overload, no people making your life harder just because they can. Just you and Linda - living, loving, writing memories.

I'll keep wishing for that...

((((HUGS))))

Lene Andersen said...

"And I don’t like having to do it EVERY WEEK!"

Oh, but don't you know that as a cripple, you have nothing to do all day but watch soaps and eat bonbons? At least this will give you something to do, a bit of purpose in your worthless life.

Sorry. Did the sarcasm leak?

Ms. Pet said...

Hey! I'm sorry I haven't been around lately for you. *hugs* I've been pretty down myself and having trouble getting out of the house, doing much or staying connected.

I'm sorry it's been so rough on you. I'd like to say it gets better, but...People here don't think its 'cool" to help people. They punish folks who are sick, with disabilities, and aged. I've pretty much given up hope on the so called "liberal" and "left wing," folk and never had much with the right wing. Although, they seem to be better at actually going out and helping poor people. But that could be my impression.

Anyways, I know how you feel. That's all I want too. A decent roof over my head, food in my belly, some good friends, good food and drink and good sex. Enough money to buy my paints. Doesn't seem like much does it? And it isn't. But yes, we have to fight 1000X's to be treated as citizens because this is a very, "we do it alone. I take care of mine, you take care of yours and you're not my problem."

We don't live in a "we're all in this together," kind of society. Not in BC anyways. We were just talking about this at my Disability Group. I'm sorry for all the energy you've had to spend fighting for every single little tiny speck of decency other's take for granted. I know how that is. It's exhausting and worst, it's soul destroying. One can only have ones fists up fighting 24/7 for so long. *hugs*

Anonymous said...

No rants from me, Beth. You have every right to feel as safe in your apartment as every other tenant does.

The treatment you get from doctors is another problem. They tend to treat every "difficul" patient the same. You just get more of it because you're commanded to the presence of doctors more than most AB folks.

Your blog is working, Beth; you're making me angry on your behalf, and I'm trying to do something about it, not just for you, but for my future self too. Sort of a freedom 95 plan.

Keep it up, Squirrel Queen. Rant and blog and laugh as long as you need to. We'll cry and laugh with you, and somehow, you, or we, WILL make a difference.

yanub said...

Doctors will simply not believe that you are active. Maybe it's something they only do with women, but I have found it to be true ever since I was a teen. That's when I went to the doctor to ask why my hands and feet were always cold, and the fat, chain-smoking fool told me that I just needed to run a couple of laps every day. I was in high school. I took Phys Ed. I ran every day, slowly and badly, but I ran. I also regularly walked the three miles home from school. And Dr. Fool was telling me I needed to exercise.

Same crap when I asked another doctor about why I couldn't improve my stamina climbing the stairs and the hills. Never mind that I was doing it every goddamn day and had been for over a year, and it still wasn't getting any easier.

Same crap when my joints started dislocating or being constantly painful. I'm supposed to exercise? Hey, idiot, there are plenty of people less active than I am, and they never dislocate a single joint or lose the ability to turn a door knob.

Grrrrrrr.

Sore sport with me? Yes, you hit it.

Michael said...

Is the article available online? That would be nice, if it was.

No wait to get another doctor or 2 -- specialists, for instance -- to take over for the doctors that aren't doing anything? Annoying.

Speaking of corsets (yesterday): in San Francisco there is a "Dickens Christmas Faire" every year. One of the vendors is called "Dark Garden;" they make & sell corsets... the window displays are living statues...

Raccoon

cheryl g. said...

You can find the article at http://www.mondaymag.com/ just click on "The Week".

Oooh Sis, I forgot all about Dark Garden. It's a wonderful place!

http://www.darkgarden.com/

Elizabeth McClung said...

Katrin: Well, yes, I guess bullies don't tend to go for the people who will loom over them and laugh in thier face.

Excellent point on reminding me about "resist" - um, I get all het up and forget? I guess I "resisted" until the third day and made all those phone calls, which it turns out are only now coming back to roost. And I think, saying, "No, I am booked that week please talk to my GP" for more than one medical exam a week IS resistance rather than "NO!!!!" in a panicked voice or simply ripping out the phones.

Frida: Well, yeah, I notice that I was diagnosed as "lazy" before being asked what activities I did even though as you can see in my pics, even now I am not exactly bursting into a high BMI. Right now I am so tired, that I am sort of scared what I might say, because when I get to the point of "Oh who cares" then I do say things like, "Oh hey, you know what, I wanted to apologize, I realize that I am wrong, that it is PTSD and that I shouldn't really been seen or treated for 7 or 8 months - thanks! Can we keep doing that? And I'll be getting better in a month or two right? Because that is what you put on your initial report right? Expected recovery in 6-12 months?" Yeah, I know how to be loved in Specialists offices world round, except my GP, who just laughs, like when he said, "So how long can you stand?" and Linda said, "15-20 minutes but I could have knocked her over with a finger." And how did you find this out, and I say, "I decided that 'I'm not really sick, and decided to prove it." He just nods and laughs. (I'm really surpised I stayed up that long even using support quite honestly - course, I paid and PAID later).

Cheryl: What is sad is it wasn't until tonight when I wasn't depressed that I finally got the joke (linda got it in seconds).

I think you are right about Fran and assistant manager as if owner was pissed that our letter (and mabye some others) arrived at his mailbox he would have probably said things like, "You live on her floor for gosh sakes, why do I pay you if you can't cover up some tacks so a tenant can get in and out and I don't have to get letters and written up in the paper" - that is my guess, which means, we (since Linda wrote the letter) might be threatening thier job OR they got a chew out for doing a bad job and are pissed because likely see it as me, "making issue out of little things" (which only makes me want to nail gun thier door closed and slip a note under the door saying I will call them one day to tell them when I will let them out - and see how they feel about ME after two or three days - but then I noticed that 'tragedy is what happens to you and annoyance is what happens to others').

Respite - good plan, how do I do that again?

Lene: I keep waiting for this life of leisure where I milk the government for my car and driver and then spend the rest of the day watching TV and getting massages from hot women (or men...if you are into that?). When does that kick in again?

Ms. Pet: No worries on not being around, as I posted myself, I simply don't have the capacity anymore to go to all the sites I would like and make the comments, and that I apologize for that. Between medical, medical and disability crap, I have a very narrow view. Sorry things aren't better in Vancouver, I wondered if it was more organized than Victoria but I guess not. Bummer, sorry.

Anon (Neil?): well sadly as we all know, that having a neighbor war (especially with sounds, loud music, and stares in the hall) can be a lot of stress. The problem is simply I can't afford to move in both moving costs AND the money I had putting in bars and other adaptive changes to the apartment.

I like this "Freedom 95" plan - does it involve a road trip? (should point out, one reason so desperate job hunting at Triumph is I will be up to eyeballs in debt for Japan, even selling all stuff I can - alas! But then, I got $400 selling my body to the univeristy - but I can't collect on that for a bit!)

Yanub: Yeah, what is the deal with "you are inactive" and "you are hysterical" - trust me, when I get hysterical, everyone in a 1 km radius knows.

Your doctor experiences sound WAY more frustrating than mine - did you eventaully start taking a large friend or a mallet? Or challenging doc to a "dislocation contest" - I just hate the way doctors make pronouncements like they KNOW you and all about you when often they have asked next to nothing at all. ARG!

Michael/Raccoon - ah, the medical system here is so understaffed that no, getting another cardiac specialist? Impossible.

I do know Dark Garden thought I can't afford them, I would have loved to have seen them. Lucky you!

Cheryl below has the link to the paper.

Marla said...

You deserve to rant. Your apartment manager sounds like such a royal Bitch. I think it is great they posted that picture in the paper, granted it gives you more you have to deal with from this woman.

Hugs.

yanub said...

Elizabeth, you got me on a rant. I'll put it on my blog, because what I started to write here got long.

Neil said...

Hello:

Sorry for being anonymous yesterday; the browser was playing silly bunnies with me and I wasn't aware that I had sent that. Though I did intend to.

Freedom 95: for those of us who can never afford to retire. My pension so far will pay me about $2.60/month. Assuming I survive to collect it.

You shouldn't have to move, Beth. You shouldn't have to worry about loud neighbours, bigoted building managers, or whether the bus will pick you up this time in the rain. (I should send a photo o some of our buses and their sign that says people are to move if necessary to make room for wheelchair users. But people with mobility devices seldom make use of public transit here.)

You asked if I'm the sort of uncle who spoils: if I could, I would. And when (you'll note the determined, and misplaced, optimism) we win big on the lottery, my wife wants a replica of Warkworth Castle; in which you two will have a suite (as private as you wish), accessible by an elevator, and a set of ramps, and at worst, stairs with wide risers Just In Case. I also have an Edmonton friend, L.L., who would be invited. She has arthritis and after working as a nurse for 20 years, is living on a fixed income and needs the food bank, while being unable to afford her constantly-increasing rent. I think we'd all have a lovely time together.

Could that offer tempt you to be a Prairie Girl again? :)

I know it is not likely to ever happen, but IF it does, I can assure you that you will be sooo welcome...

Yes, I'd spoil you; you deserve to be spoiled. So have Linda spoil you for a bit, on my behalf.

Michael said...

Look up, on Flickr, the words "dark gardens Dickens" to see pictures of the display windows at the Christmas faire.

Corsets are nice.

As for the article... I hope it looked better in the actual newspaper. The online version looked kind of anemic.

Raccoon

Dawn Allenbach said...

I've said many times of being in New Orleans -- I came here to get a degree, not fight with the apartment complex and the university about automating doors.

Zephyr said...

I actually filed a complaint against a former landlord who was worried about my scooter 'scuffing the carpets'...and had the Human Rights Tribunal say I didn't have a valid case. It was very disheartening.