Thursday, April 24, 2008

Back a few days and already a bitch session: buckle up!

My nose REALLY hurts. This may be because three different people hit it about 35 times. As much as that SHOULD lead to some story about why people shouldn’t take me out drinking when I am feeling sarcastic; it was merely boxing. Yeah, remember that “non-contact” sport I do.

I have made an observation: When you have delayed neural response AND you haven’t been to class for three weeks, during bout time choosing the three fastest boxers and saying, “I hope you’re not going to hold back on me!” might not be the best long or short term plan. Good news is, while not a SMART plan, getting hit the head so often means....I'll have plans like this a lot?

I fought….I mean I bouted with the girl from my first boxing video (sept 07), who is very, very fast, like about 6 or more punches a second fast. I held up my guard and said, “I’ve been wheeling up hills in Japan for three weeks, nothing can get through.”

She said, “I can if I break it down.”

I said, “Show me.”

Bam, bam, bam, bam, bam, bam, bam, bam, BAM! (the last one was her breaking through and hitting my nose). At one point I thought my nose would start bleeding, not that I wasn’t giving back. When she was on a roll, it was all I could do to guard myself but she sometimes would drop her hand coming in and I’d catch the side of her nose and throw her whole head back. So that…fun, I guess.

Then I bouted with “Joe Cool” who is/was a pro boxer, has been doing it for many years/decades. EVERY time I moved my left hand, he stepped forward and popped me one in the face.

After the third time getting hit in the nose, I figured out what he was doing (which is a good trick when you are getting hit in the face so often)! So then I tried “Why not hit him in the stomach REALLY fast and then put my hand back up to guard.” The plan worked right until the second I hit him in the stomach and before I could bring my hand back: POW, another one in the nose.

Then there was the “feign to the stomach, stop, block and hit him the head.” I think that worked once until he hit me in the nose with his OTHER hand.

I have to say in all the months I have trained with boxing Joe Cool was the first person to actually get (MAKE) me “bob and weave” IN my chair. Throw punch to his body, use the hands to cover the head as a sink my head to my belly and swing far the other direction to pop up and hit him again in the body. Hey, let him go ahead and hit the TOP of my head, just give the nose a rest will ya!

I asked him afterward what I was doing wrong and he said when a boxer is taller than you and uses the jab you have to step back as he jabs, to make him lean forward out of distance.

YEAH. Now, how I do that in a wheelchair with my brakes locked again? I do hate getting someone giving me advice like, “Step back and make him come to you” when looking and talking down to me in the wheelchair. Maybe I should take that as the compliment that he doesn’t see me as in a wheelchair, just a REALLY short female who never moves her lower half.

That’s okay, during the bout I cornered him, trapped his glove with mine and then gave him two hooks to the ear while his body was trapped against the wall. Sorry, I didn’t get the queensbury rules of wheelchair to able body boxing so I tend to, after the 20th hit to the nose try to throw people against the wall and then hit them when their hands are down.

Um, golly! I’m really not selling this as a “non-contact” sport am I? I have also noticed that while I was away the women have been reduced to me and superfast girl. So there are like 14-16 guys now and that really changes the dynamics.

BUT…. I did sweat. Which was the point of the whole thing. So I live another week and my hands turn less dark colours (we hope). My GP is ordering some sort of lung test for the CHF (something heart failure), maybe an X-ray? And my beta blockers have been upped as he knows and likes the ER doctor from pre-trip. But the GP really doesn’t know how part of my left arm could turn blue for a couple days or both of them green for a day, but he wrote it down. I hope that will come in handy when I ask for the IVIG treatment next week (chances are slim, but why not ask?).

The current weather forecast for Sunday morning is Sunday and rainy, keep hoping for sun because once the pain of tonight dies down (about 8 pm Saturday night, I figure), the I want to be wearing those black wings for the 10 the next morning in the SUNSHINE.

Sorry this is a go nowhere post but I have had three homecare people in today which included two new people, which includes a new home care person I am training right now (each takes an hour or more to train, some are only here an hour), the night person is taking longer. She may not last until morning as I am turfing all workers who do not meet my standards AT THAT MOMENT (and she is on thin ice).

The standards are pretty much a) This is my place; treat it as such. B) I am your number one task, focus on that or on what needs I have. C) I am the boss, because I am paying between $19.67-$29.32 an hour to the WORKER ($34 an hour to the agency) which means I get to make the decisions and d) I get to determine what common sense is, and I don’t have time to give lessons. I have decided I would rather be the bitch and get some decent people than spend my time, as I have this week, almost missing two naps because people thought “it would be okay” if they showed up significantly earlier than their shifts, or got upset at ME when they showed up 30 minutes early and had to wait for me to arrive. Or in the case of tonight stood and watched while Linda took my clothes off to shower me ("Linda close the door." (whisper) 'she's just standing behind you and freaking watching me get naked')

I was told today about a care facility where there are on site care workers under the management of VIHA (that is known as “Devil’s Spawn” on this blog: the Vancouver Island Health Authority), and ALL ‘clients’ (Even though they are renting) are to be ‘put to bed at 10:00 pm, regardless of age.’ Well, one woman with advanced MS doesn’t want to (as I wouldn’t either), and says, fine, if I change my schedule I need someone here at 6:30 to get me up. “No,” says VIHA, “we can’t send anyone to get you out of bed until….10:00 am.” So, 12 hours in bed, without choice. And no, this isn’t a prison, this is the kind of place I am likely to end up once I am too “care-intensive” for home.

I just have to ask about the feminsit angle when a female case manager and a female RN and a female social worker “determine” the bedtime of a bunch of adults including a perfectly rational woman with MS. We are adults with disabilities right? Or did it turn into disability=child? Because quite honestly, I know a lot more 14-15 year olds who are treated with greater dignity about assisted autonomy than that. Anyway, welcome to Victoria, here is British Columbia: (real motto coming up) The Best Place to Live on Earth! That motto should give everyone a pretty good idea about the amount of drugs we do here in BC.


Stephanie said...

Good for you for demanding that the workers adhere to your standards.

You should put those standards on a sign and post it in a prominent place in your apartment where the workers can't help but see it. Like when employers post the company rules in a workplace. That way they will know and will always be reminded of what is expected of them.

When you have a day off, maybe can go to that care facility and organize the clients into a union to demand that their dignity be respected. I am sure that if you ever end up in a place like that, you will go Norma Rae on them.

Neil said...

You go, Beth! I wouldn't call it being bitchy if you kick them out for incompetence. If they're not looking after YOU while you PAY them to do so, then they deserve to be your sparring partner.

Hey, you know the hyperactive thyroid will be your cause for weight loss, don't you? That happened to my brother; he turned into a bone rack over three months. The only problem was that when the procedure to do in only part of his thyroid killed it all, and he started looking (and feeling) like an over-stuffed sausage in the following two months. He's been on daily meds for years to replace the thyroid. But his weight's okay.

You keep fighting, laughing, bitching, and loving, Beth. And blogging, of course. We're with you all the way.

And my wife also thanks the two of you for the postcards. She said it was very sweet and VERY thoughtful of you to do that for us all, when you were so busy enjoying your Dai Boken and too busy with health and other issues that tried to keep you from enjoying your Dai Boken.

Gaina said...

Hey, when you're dealing with an AB guy throwing punches, even if it is in fun I say 'Queensbury Rules, my ass!' Push against HIS body to get you back out of punch-range. Have you thought about changing to martial arts? It seems there are more ways for a person in a wheelchair to neutralise their opponent there than in boxing.

The attitude towards disabled people (disabled=child) in your particular region sounds like England. If I was you'd go to that place for respite just to wind the buggers up! LOL

Victor Kellar said...

Nice to see another boxing post. When everything is going to hell in a handcart, exchange a few sharp blows with someone you like .. thats my motto

Perpetual Beginner said...

Sounds like boxing is just about exactly as non-contact as karate is. Fun times!

Why so many people assume that maturity and brains vanish when physical ability does is a mystery to me. The first woman I was ever an aide for was a seriously formidable intellect (summa cum laude BA from Wellesley, JD from BC, MA in education from BU, three teaching certs, and she's working on her Ph.D.) - yet people will consistently address her aide rather than her, even when they're there for her help! Which, in turn, reinforces any idea the aide has that she's mentally defective somehow, because after all, everybody treats her that way.

I came back for two weeks to help her with her wedding. She did a bang-up job, easily the smoothest run large occassion I've ever been to. But I was shaking with rage by the end of the evening, trying not to slap the living shit out of the next person who came up and congratulated me on the wonderful wedding I threw her. Did I work my ass off? Yes. I ran all over town 18 hours a day for two weeks. But the decisions and the organization were all hers, and not even her own bloody family would give her credit for it.

Sorry - that turned into more of a rant than I intended. Suffice to say that your observation about treating the disabled as if they were small children - not very bright small children at that - is right on all counts.

FridaWrites said...

10 pm bedtime?? I don't think so!! They just don't want to have to work.

cheryl g said...

That's my Sis... go to boxing and take on the fastest boxers.

Good for your GP. Let's get that congestive heart failure/pulmonary edema ruled out!

It is ridiculous what the health care companies are allowed to get away with.

Elizabeth McClung said...

Stephanie: I will make a sign, and I did try to get it added to my care plan when my night worker took off this morning an hour an a half early (I found out later as I woke and knocked for pain pills and Linda came instead - the care agency didn't seem that concerned - maybe if my payment takes off a certain percentage they will care more?).

Yes, if they ever try to pull that kind of disability crap on me (it is the VIHA building on Gorden Head by the way), I will be going a few personalities on them.

Neil: See, I get that and you get that, so why is it the person and agency I am paying seems to thing walking in my house is doing ME a favor. I am tempted to just use "dog grooming" agencies instead, if I paid them the rate I pay for to get showered, they would give me (or my dog) the best treatment ever!

Neil: I do have a thyroid problem, however it is a hypoactive thyroid (dying thyroid) which SHOULD cause weight gain, I however have lost I think 40-50 lbs. So yeah, even more of a medical mystery - I sleep 11-13 hours, I am supposed to be GAINING weight and I am losing wieght.

It was our pleasure to send those cards to you and your wife, just both take care out on the roads walking and cycling (you seem a wee bit accident prone).

Gaina: That's true, I should I have used his body to push away. I wanted to take TaeKwandoe which has a wheelchair divisions but the nearest one is in Vancouver so that is a no go - but there is kickboxing, which uses elbow strikes. I think I need to transition into something a little less requiring speed since that is going for me and something with exercise and brain power.

I loathe the disabled=child attitude, which my night worker did on me, "You had a job?" "You got a degree?" "You travelled? - yes, we all don't curl into shells, get over it.

Victor: Yes, I think my nose took the brunt of my pride but I feel that I might as well fight the best AT thier best, it is just usually they roundhouse my ears instead.

Perpetual Beginner: Yes, very non-contact (hahaha!), I want to take the kickboxing for woman they have too.

Yes the whole, "they are in a chair" or "they slur" ergo, they aren't fully functional upstairs makes me wonder how Stephen Hawkins deals with it as many people IN disability work don't know his name (I always ask) so how many times a day does someone say in a "Don't do THAT little boy!" voice - and say, "Now you want to stay away from those careful!"

I love the rant because it is true, people even standing by would NEVER tolerate the type of talk about a race or a religion that we allow to go on about someone with a disability, If someone said "Thanks so much for throwing her this wedding, we know how hard it is for the Jews to do things" people would flip (and rightly so) but you say that or imply it about someone with a disability which HAS NO BEARING on the actions which occurred and everyone just nods thier head. (sorry, that was my rant!).

Frida: I have seen like, maybe 5 sunrises, so yeah, the 10:00 pm bedtime is not happening here!

Cheryl G: Yes, we move ahead slightly but today I spent 2-3 hours dealing with Beacon and the way I was talked to at beacon or hung up on, when I was trying to tell them the actions of one of THIER workers. Seems they would want to know, but no, I was told, they are "too busy" to listen.

Raccoon said...

your standards seem very reasonable to me. It's about what I have here, along with "if it looks like it needs doing, do it" (I have some others that revolve a little bit more around chores, but those aren't the common sense ones).

Try not to put yourself in too much pain. I mean, your workers might report you to the health agency as being beat up by Linda rather than going boxing... I mean, sparring...


SharonMV said...

I get IVIG for my immune deficiency (CVID) - been on it for about a year & a half. I sent you an e-mail about IVIG & some other stuff last night.

It's really appalling that the "care" workers treat you like that. You'd think they could at least do their jobs.


missnomered said...

(by the way, this is Lindsay. I have my own blog that I actually update now!)

Aaah... those care workers sound kind of assholeish. Good for you for standing up for yourself!

I know I haven't commented on here in a while, but your trip to Japan sounded awesome.

Anyways, keep on keepin' on!

yanub said...

Back when dinosaurs ruled the earth, and both my legs worked in a fairly predictable fashion, I was a nursing home aide for about a month. I hated it. And the chief thing that I hated was that the inmates (I use the term to signify their real relationship to the institution) were stripped of all power over the bodies. Rising and going to be were determined for them. No one could be allowed to sleep in or hit the hay early or late. Everyone had to eat at the same time, and would be forced to eat if they refused. Everyone had to have a scheduled shit. Fail to shit, and you would be the recipient of an enema. No one could leave of their own volition, even if they had entered freely. It was a hell. Everyday, inmates would cry to let them sleep, or not eat, or please ignore their lack of bowel movement. I don't know how a person could keep doing a job like that and not lose their very humanity in the process.

So, good for you for not taking it on the nose where it counts. You are the boss and your care employees should know it.

Neil said...

Accident prone? Me? The last time I fell and hurt my self was in 1984; the front wheel slipped on a wet railway track and I sprained the left thumb. This time it was the right thumb...

But it was a misjudgment of gravel this time. It was very stupid of me, and I won't do it again.

I rode 7K home today, and had no trouble at all, so 10K Sunday will be a nice wake-up ride.

Beth, you gotta go for a grant and start your own health care company. Offer just a few cents an hour more, but with your standards, and with the company caring for the workers as much as the workers should care about the clients, you'd have people flocking to you for care.

And think of the fun you'd have when someone comes to ask you where the nearest employee is. "That would be me." "Ah, can you point me to the boss?" "That would be me." "Uuuh..."

Of would that be "duuuh"?

Neil said...

Oh, underactive thyroid already. Sorry, my bad; don't listen to *my* medical advice!

And my lovely wife agrees that it was our pleasure to read about your trip.

Also: thanks to everyone for the book suggestions for my 11-yr-old. Ender's game might be a bit dark for him at the moment, but after he's finished the Potter series AGAIN, he'll get into some of the books recommended. His homework tonight includes finishing a spelling assignment for which the students chose their own words (with teacher's help); Logan got stuck on his own petard, and couldn't come up with a sentence including the word "asteroidal." A sentence for "despondent" was no trouble. See what I have to deal with as a parent? :)

Elizabeth McClung said...

Niel: I have to immediately jump in with the obvious "He made an asteroidal cccultation." Which is geek for getting to call something X-465. Or how about, "even the motes of dust remained in their astreroidal orbit" - hey, at that age I wanted to be called Aurora bcause it was the light displayed combining the sun and the geomagnetic forces. Imagine my complete surprise later in my early college days using it as online name and getting hit on all the time, asking why and finding out it is a popular porn star name. Sigh. And thus doth innocence go!

Moggy said...

If you're interested in doing martial arts of some sort, it might not require having a division specific to wheelchair users... I don't know if it's the case, but a good friend of mine is in a chair (he has spina bifida) and posts frequently about his martial arts classes & competing. He's Chungjik over at LJ if you're interested; he might also know how to organize a chair-focused group & find participants.

Here's to hoping you don't have CHF! If you do, though, know it's not as horrifyingly end-of-the-worldish as we laypeople all tend to immediately feel... One of my cats (Bastian) was diagnosed with an advanced case two years ago this month, but thanks to the same meds a person would take, he has thrived. :)

In case this is useful: omega 3 + omega 6 are accepted in cardiology to help heart function quite a bit, plus carnitine & CoQ10 are believed to as well (studies aren't finished). Lysine is also excellent for building muscle or other lean tissue mass, though B's on it because it boosts his immune system.

Neil said...

Actually, the most usual use of "asteroidal" is in connection with asteroidal occultations. That's when an asteroid passes in front of a star, blocking out its light briefly.

More often, it's the moon that passes in front of a star or planet: a lunar occultation.

But I'm a failure as a geek tonight. What's X-465? I presume you're not talking about a John Deere tractor...

Aurora's a gorgeous name. So's Phoebe; there are lots of wonderful astronomical names for females. But not for males. Imagine trying to introduce your kids: "This is Andromeda, and here comes Bootes." See? It just doesn't work. Hmmph.

Elizabeth McClung said...

Raccoon: I realize after talking to the beurocrats that while they might drop "clients" they do not drop workers (I asked that question). So I will take the CISL grant and try and find my own workers, someone who wants a little brain and chatter with that shower.

Yeah, I need to keep the bruising less obvious - haha, that didn't sound right.

SharonMV: Yeah, I really would like to TRY the IVIG, becuase it isn't like it is Chemo - let's try and see if I get a remission! I too am constantly amazed (and terrified) at what the workers do, also, if she is there so LINDA can sleep, why is she waking up LINDA at 6 something to tell her she is leaving - defeats the purpose, no?

Misnomered/Lindsay: Hey, did you get a post card from Japan - I like your blog and will try to read as I can. If you want a postcard FROM japan but mail from say....CANADA and didn't put your name on the list just send me an email (profile) and your address and one will be sent with all the japanese stickers and fun - hey mail is cool!

Yanub: your discription of that process and the home is sort of like when I went into respite (and was 30 years minimum younger than anyone else there and they were all, "Did you have your prune juice?" and I'm like, "What!?" - it really was a short and horrid picture of dehumanizing both for those in the home and quickly those enforcing the policies. Yuck.

So, avoid!

Neil: I will get the grant to start my OWN staff for me and see how that goes, then I can expand from there. I do think having a FEW advisors who are actually clients or poeople with disabilites even at union meeting of workers would be important, so often people (including clients like me) forget to see the other side.

I am glad your wife enjoyed the trip, hopefully she will like the new post which is the "lost 129 pictures of April 11th" - a sort of look back with new and beautiful pics, it really was a VERY beautiful time in many beautiful places in such a short time. No wonder going to Starbucks isn't quite the thrill it used to be.

Oh crud, I thought that was the time you "proved" the existance of the astroid and thus got to name it - in the same way the three extra moons of the earth are number like LQX2434 and such. So I guess I lose nerd points on that - however, "al" is a suffix meaning pertaining or belonging to so if something is in an asteroid's gravitational orbit would that not make it asteroidnal (oops it would, which is a different word). Oh crud, forget it, I lose! I am so despondant!

Moggy: thanks, I did talk to two places today and both where up a set of stairs but one has the members carry somoene up in thier chair every week for classs. So maybe that worked since I never thought about that as a solution (I mean who does, "Oh yes, I will just show up and have people carry me - and when you are my size, well, I have ISSUES, about people dreading me showing up in case they have to carry me...and I'm losing weight).

Thanks, I took it from somoene that CHF wasn't like, in five minutes and since I am on a rapid degeneration (I had this problem twice today as people were like, "So this all happened a little over a year from DIAGNOSIS?" and we are like, "No, from first symptom, remember I said about 10 to 20 times the speed of some MS types" - so if I can breath easier and lose some swelling that could be good). Thanks for the links I will definately check them out!.

missnomered said...

Awww... thank you! I would love a postcard from Japan but the thing is I live with my parents and one of the big rules is "No giving out your address to people on the internet." I know you're not sketchy, :-P it's just that my parents don't. But thank you for thinking of me, dear!

Dawn Allenbach said...

Basically, the care givers want to get everyone in bed so they can just sit on their butts instead of doing their jobs.

If you (the general "you," not you specifically) don't stick up for yourself, some people will walk all over you. It's a power thing.