Tuesday, February 05, 2008

Facing the No-Win Problem while nailed into my apartment

I went boxing yesterday, not because I wished to, but because if I did not, I would not be strong enough to go boxing ever again. But you will see more on that later. These last seven days, two things have become clear: my care giving is and will remain in jeopardy and that my health and function continue to deteriorate.

I think that I believed that if I just kept posting and kept writing, that I would go on, that things would go on, in one form or another, forever. I looked at the future and all I could see medically was a no-win scenario. In chess, you can either accept defeat and knock over the king, you can play out the moves or you can try to find a solution by gambling; bringing in gambits to play with your opponents head.

In other historical no-win scenarios, either the person in charge has simply thrown out the rulebook or sacrificed the thing considered unsacrificable. Fredrick the Great of Prussia, in the dark parts of the war of the Austrian Succession looked like he had lost his entire country so he took to the countryside, and raised an army, leading his own calvary in the time of leaders doing that was centuries past. On Iwo Jima, by digging into the hills, living in conditions which required the breathing of sulfer, without any air or navel support, the 21,000 Japanese held out against unlimited bombardment and land forces outnumbering them 4-1. They held the opposition and continued for fight for the airfield for 35 days. Though Japan surrendered in 1945, opposition continued from soldiers on Iwo Jima for another four to six years (different sources). Of the over 21,000 troops, 216 were captured alive.

I give these as two examples of solutions to a no-win scenario. In one, a leader make his own rules and gambled his own life while in the other, defeat was inevitable, but regardless, it was contested almost to the last individual. A few days ago, a blogger I read, a blogger I identified with, whose posts had become more erratic, coherent but showing greater difficulty with typing, died. I think I needed to believe, because of the similarities between our conditions and his later speed of progression as well as care giver issues that his posts would keep coming, smaller perhaps but as long as he kept posting, the on-line voice would continue. But it didn’t. This combined with the lack of commitment and actual withdrawal by the care giving agency from it’s support of my care, I suppose it could be said I went a little insane.

I am far less terrified of the pain or the loss of function that lies ahead of me, than that future with me helpless, unable to communicate unless my care giver is bright enough to use my speech box, unable to receive proper care. Considering that my care agency, the only one, the one funded by the government daily changes shifts or sometimes cancels care without notification, how much worse will this be when I sit in a diaper of my own shit, wondering if they will cancel the person for today. A mind intact but left in fear that a care giver’s breakup with their boyfriend could result in abuse I would be helpless to stop or even protest. I realized that I could not fight this, and that I would be alone, and it filled me with a dread unbearable.

I told Linda that my goal was to get back enough hand function and arm strength to be able to hold a .44 steady at the side of my head, without tremors, and enough strength to pull the trigger…while I still could. I could face my own physical degeneration, but not the administration, bureaucracy and apathy that would be my source of security and future comfort.

Twelve months ago I was told my problem was P.A.T.’s. A little over six months ago, they were still stuck on B-12 deficiency. Yesterday after ANOTHER VIHA meeting at my apartment, which I managed to sleep after 5:30 p.m. sometime but was woken as my homecare worker dumped the entire utensils into the sink at 6:30. For someone’s whose stability of condition is determined by the amount of sleep I can get and I need 11 hours and hadn’t gotten eight hours combined, it was just another thing, just another thing.

I got ready for boxing and went up, not knowing that in hour, this is how I would look. I have talked about my “red side” and my “Yellow/white” side, in the picture, you can see the arm that is clearly red and the other that is yellow white.

I got there in time for bouts. I was in a dark mood and Ian wanted to know what was wrong. I told him a friend had died and he spontaneously hugged me which both made me start crying and want to hit someone very, very hard. The guy they paired with me wisely kept out of range. The second bout I got the second assistant coach who I had asked to hit me in the head for three minutes. I told him I would not even hit back for the first minute. I wanted to practice defense against hooks, jabs and combos. I got hit in the head a lot, but I got better at blocking and was going, “Faster, go faster” and he said, “The faster I hit the harder I hit.”

“Like I care?!” He did another combo and I yelled, “Faster!” Now when he came in and did his flurry of crosses and jabs the force of his hits had my front wheels of the chair completely off the ground, only by leaning forward was I able to stop falling backward. He would hook my head and I would throw a body shot and he backed up, my chair thumped back down. “Come on!” And I was wheels off the ground again, four and six combos with hooks and crosses. At one point I just grabbed his head and gave him three hooks.

“That’s illegal.”

“It is!”


“Oh, sorry. Aren’t you going to keep hitting my head?”

Next week he is going to add body blows. After my third bout, everyone got in circle for warm down stretching. My speech was already going/gone. During the last bout, for the first time my left hand and arm started to tremor as well as the right. I had noticed over the last five days that I had lost a great deal of left hand function, including being unable to hold a pen firmly or catch things. Since it is my wiping hand, I really hope that it holds out a bit longer.

Linda started pushing me home but I was pretty out of it, apparently I was having problems breathing, and my diaphragm wasn’t working right so I had to use my neck and ribs to suck in air. In the end, she pulled me upright with my head up to the sky. I had lost swallow function and this would cause problems later. She had to stop in the two blocks to home to get out the oxygen.

I have over the months been getting a lot of comments about how super-duper my life is because I am always out and about. Even my parents had this idea that because I do boxing and go to the park, that I had a great life full of energy. We realized that is because we take a couple weeks of photos of me at my best and then make them into a two minute video. I only show the best 60-90 minutes of my week. So Linda and I talked it over and I told her to start taking photos when I was, well, pretty much normal, or crap, which is the other 90%+ of the time. I didn’t know until later that she started last night when I was trying to keep up with people doing the “Warm down” at boxing class (hey, I was TRYING HARD!), and then more when she got me home. There is a one minute video of the clips if you want to see a bit of what I look like the “Rest of the time”

I showed this to my home care workers who all laughed hard at the clips because they see me like this all the time. This is what they refer to as “Not enough sense to know when to quit.” Anyway, I am glad Linda stopped filming at the end because the next while was spent coughing up congealed phlegm and saliva that had drained into my lungs. It came up pink. A quick thanks to Kay from the Gimp Parade who had sent me some tips on how to clear your lungs without lots and lots of coughing. Needless, with my head hanging over and the pink crap coming out of my lungs it was a real party. I was on the floor there for the next two hours. My overnight worker came and said that with my original coughing I probably just tore up the esophagus a little.

Turns out it was her call to H., the Juan de Fuca RN Administrator who got them to make the meeting last week to push me out of VIHA on a CSIL grant. She had called H. the morning they decided to call my “emergency care meeting” to tell H. to make sure when Beacon takes over next month they need to send someone with hospital or medical training. She told them: no one who can’t speak English, no one who panics or calls 911 over any little thing, someone over 5 feet tall and someone with the medical training to pull me on a side to breath or hold me upright to open up my lungs. And especially no one just off of the 10 weeks of training. H. kept trying to put the issue on my care worker, saying she hadn’t filed enough reports, make her cowed. My care worker just kept saying, “I’m not calling about whether I filled out forms or not, I am calling because you need to ensure you take care of Elizabeth, and that is what I am going to talk about.” Well, they ended up “taking care of me” all right. So we had a little laugh about that (don’t laugh after you fill up a bunch of paper towels with pink phlegm).

I got to bed but kept waking in pain, but better than some nights and I managed to get my own pain and muscle relaxant meds. I think her last words to me that night was, “You nutty buttercup.” That or “You think too much.” Earlier she had made a big deal because I kept sniffing Linda and telling her how good she smelled.

“Hey!” my night worker yelled from the other room, “None of that stuff while I am here.” (she’s straight)

I wanted to know what made Linda smell so good. She told me it was it Odor de Linda. “Mmmmm, so good!”

Nightworker: “Oh, you’re doing stuff again, aren’t you!?”

I fixated on one shoulder of Linda’s sleep outfit when she “remembered” she had left the sleep outfit on top of a lavender sac. So I told the nightworker it was safe to come out now, it turns out Odor de Linda is NOT naturally lavender.

Nightworker: “You two! And it isn’t even Valentines yet.”

I was up early for another meeting. About to wheel out when I get a call from the VIHA case manager, saying she got our message we want to talk to some people who are USING a CSIL grant to see how they use it and rate it.

Yesterday, somewhere, with Linda wheeling me home, one of my gloves dropped out. I went back today and it wasn’t there. Who takes one glove?

They started with hammers to prepare the floor for carpet laying tomorrow. I have another morning appointment. It turns that the sides of the entire hallway are lined with nails, all pointing STRIGHT UP. Okay, a problem, but not as big as the row of nails that I will have to roll over as they laid a strip directly across the access to the elevator.

I have to wonder about these guys. I said hi to them in the hall, they saw me wheel in. Then they lay a layer of nails set in wood with the points straight up across the access to the elevator and go home at 4:30 p.m. I know they won’t be done by tomorrow morning but I guess for once that I have to HOPE they work on my floor tomorrow.

I don’t feel the need for the gun tonight. Maybe you CAN get used to anything, even uncertainty (or maybe not).


cheryl g. said...

(((HUGS Sis)))

I'm glad you've decided to give the bullet to the brain a miss at the moment. We have a lot to talk about yet, like why Angelina Jolie is wasting her time with Brad Pitt when she could be with say... me...

With apologies to those who find the language an issue - my only comment about the petty despots at Juan de Fuca and VIHA is... MOTHERFUCKERS! Beyond that I get pretty incoherent...

Those people who keep commenting on your superduper life may be choosing to look at your life through a filter rather than accept how it truly is. It's not just a river in Egypt you know.

Anyway my offer still stands. If you or Linda need me just holler and I'll come a-floating. I have lots of work arounds for my lifting restrictions and I am medically trained. I'm also housebroken.

Lisa Harney said...

Would it have killed them to delay putting the nails in front of the elevator until the next morning, when they could immediately cover them?

And that whole tangled mess with VIHA/CSIL. You'd think that a grant could be used to improve the care you receive, or at least keep you at a standard that you require, not used to dump you out of the system because you complained too much, or because someone else complained on your behalf.

Bastards. :(

Moggy said...

I agree with Cheryl on everything... Especially the "motherfuckers" and the idea that your life is, to quote a sarcastic online friend, "omg super!!!" My thought about your life in the short time I've been reading is, basically, "wish I still had it in me (emotionally) to push this body like that."

As for the uncertainty, yeah, it's generally possible to learn how to live with it. I had a LONG time of relative physical stability, but haven't had it at all for about three years. I finally started learning to live with it, and plan next to it, instead of waiting for it all to go away again, just in the past month. It wasn't an easy road.

I know it only handles part of the problem, but you might look into getting the bowel-flushing device I've had for five years now. It makes incontinence a non-issue, since nothing is in there to leak out -- it's just a 1-hour twilight epidural procedure, then a few days in-hospital for observation. Then you can hook it up to a bag of tapwater every day or two, sit on a commode, and rinse everything out through the natural path.

Er oops, it's a lot later than I realized...gotta go to bed... Please do stick around, I figure if Kay & co. manage to get people helping out without being abusive jerks, it must be possible somehow. Maybe she can tell you how.

Lindsay said...

Damn. It really sucks that you're in that situation with your care, and I honestly don't know what to tell you.

I will, however, say one thing. Jim Henson once said, "My hope still is to leave the world a bit better than when I got here." You may not be as famous as Jim Henson, but you have imapcted many lives in a positive way.


elizabeth said...

Sigh. I'm convinced you are super human.

Um - those guys with the nails. Perhaps you should put some under their tires... that could be fun.

Veralidaine said...

Hopefully I have not given the impression I find your life wonderful, Cuz- I find your ACCOMPLISHMENTS wonderful, though- and I still maintain that I will find a way to manipulate your official birthdate and make you 200 years old so you stop making everyone else look bad for not having done all the cool things you have throughout your life.

Your current life, though? Well, I talked about your blog (hope you don't mind) at my caucus last night (lemme know if you need an explanation of the Yankee caucus system, it's only in a few states) when I introduced a resolution recognizing the importance of the ADA and the rights of people with disabilities to make their own medical decisions and receive in-home care. Can't believe Canada doesn't have a version of the ADA. Can't believe they can do that to you with the nails.

I think you're a wonderful person. I envy your talents and accomplishments far more often than I think the "but for the grace of the flying spaghetti monster there go I" thoughts that I am sometimes guilty of. But I hope I haven't given the impression I think your life is all squirrels and boxing matches.

Gaina said...

Have you read 'The Spoon Theory' on butyoudontlooksick.com? I think it's a good time to start rationing your spoons, my dear xx

Dawn Allenbach said...

People like to focus on the super-duper days because thinking about/dealing with the rest of the time is just . . . I don't know. Hard? Uncomfortable? Reminds them too much of your and their mortality? I think we are even guilty of it. Like you said, if I can still have good days, then mortality must be far away.

You've said that the health care in Victoria is worse than it is in other cities. Is there a reason you're still in Victoria?

Elizabeth McClung said...

Cheryl: Wait, I thought I was Angelina's secret lover? The problem is that instead of accepting that they are a care agency and that with being a care agency comes the complexity of the tens of thousands of conditions, they have decided to act like a box manufacturing company and if this box design is taking too much time or is to complex, they will just outsource it or cancel the order. But, I'm a human, not a box; even if they thing that my assuming the entire paperwork of a caregiving agency to hire people at a lower wage than they are offering is a "good fit" for a degenerative condition.

I would like to see you again but until I go to hospital, I'll hold off on your kind offer.

Lisa: Well, I was woken by them nailing a strip of nails in front on MY door, then we had to get them to agree to cover them, then we had to get them to actually cover them, then we had to get them to go back and put back on the cover they had original put on them (and taken off) - all from 9 am to 10 am.

The grant requires that the patient be in a Chronic and STABLE condition. I asked my case manager if she knew that my file reads, "Degenerative condition" and she said, an exception would be made in my case. I think a CSIL grant would be good if you were young and independant and did have a stable condition; however, it does not appear a good solution for a home care agency which cannot already deal with someone with complex health needs who is going to get worse.

Moggy: Well, I REALLY hope I get used to uncertainty in less than three years, but what you describe first kinda sucks but makes sense. This is what I constantly do and what I was asking VIHA and Juan de Fuca: "What about July when it is hot?" "What about December, when my condition has changed, what are your plans?" The problem is that at some point, I don't have control over that, and it is that aspect which scares me, I can look ahead but if they won't act...

Well, as er graphic as your suggestion is, I was up until 2:00 am last night because of that particular problem and it seems the pro-biotics aren't working anymore becuase I am constantly overtaxing my system which can't regulate, so I need to draw a line at which something like that could bring a form of stability as well as not having to worry about losing I think they call it Spinctal response nerve (part of the nerve degeneration).

Lindsay: Yes, I spend most of my time working toward STABILITY (which someone said due to mercury retrograde means I won't get it?), and for them to just add more chaos and uncertainty isn't helping. I also know that I publish pics of me smiling and I dont have any pics of me in crisis or any "big" problem, but I thought some images of "normal" evening, or "normal" night movement and ability might give people the idea of the range I have. Also, having a body with two colours which no doctors seem to know what to do about is kinda.....different.

Elizabeth: I can't get out my apartment now, they have put up nails there - but you are free to distribute the nails where you wish (like under tires).

Veralidaine: I am in a bit of a funk, and tired but things will be better and I will have a good afternoon but even then I will probably need Oxy, that is just what is right? I am glad I am of some use, even if it is to scare the US into making sure they keep the power of the ADA and not give away the intent of a bill which you are blessed to have. No, but most people don't put up: Hey, this is what I look like after class - and I felt I kind needed to do that - I exercise becuase if I don't I get weaker and unstable quickly, but it has a cost, and eventually I won't be able to pay and then comes the next plan, haha!

Gaina: Would be a great plan regarding spoons if the very people who are supposed to be sending carers to assist in preserving spoons didn't average about 3-4 calls and 2-3 meetings a week taking away those spoons and the next days. Linda said yesterday at the meeting, my fingers were actually blue, even though I was on oxy, but they never stopped the 75 minute meeting which they scheduled at what as convenient for them, which happened to be my sleep time. The problem is: what happens when you have 10 spoons a day, and by Tuesday, different agencies and apartment managers have forced you to use up 35 spoons, and then you body goes into shock for 4-5 hours using up another 15 spoons, and you are awoken a few hours later by hammering of nails in front of your door (cutting down a few more spoons) - the spoon theory works great for those with a certain number of spoons and with assumption you can control enough events around you - when you spoon number gets to a certain low point and continues further in a situation where others constantly exert control over you - all things fall apart - particularly me.

Dawn: too true, I would like a few days to fantasize that it will be like this forever. I have worked since November for a safe stable environment and so far, have nothing to show for it. Oh well, the blog is going to show more "warts and all days" - I have a medical condition, and though it may be uncomfortable, since being sick isn't yet a crime, I'll show pictures of it all, the good days, the bad days and the normal.

I stay in Victoria because a) we have a reasonably good apartment and I don't have the energy to find another and b) my partner has government work here which brings in the money to pay for oxygen and the medication and the other costs of remaining alive. We have applied for other jobs, but nothing as yet. And we haven't really the desire to go to Montreal or Toronto, which only leaves the mega city of Vancouver - while here I am two blocks from the Y, three from the library, four from my video store- so if I can go out, I can go places easily, even to my GP - only I am totally housebound, maybe we will look elsewhere then.

em said...

Hugs from me. I'm glad you are blogging the hard times too. I'm totally, totally glad that you two are going to Japan. I suspect a good vacation has never been more deserved.

A MOM said...

I have been a lurker since I heard that you were ill (my son is an epeeist) and I have followed your journey. I am a former nurse, and although I am short 5'3, if I can help out during the day or evening, I would be honored to.

Your writings and musings reveal a most heartbreaking yet at times amusing (I love the squirrels), and oh so revealing journey. Keep on with the writing. Many of us can only watch your journey sometimes with laughter and many times with tears. You are loved, Elizabeth.

Elizabeth McClung said...

Em: yeah, a lot of hard work ahead with the trip but we are really looking forward to it - Samurai towns, Geisha district, Edo period streets and town, and of course, Yaoi and Anime themed Cafes! (And yes, world heritage sites...and tame deer!). Our plan is, do what we can do the hours we can do it - and DON'T end up in the hospital.

A MOM: Thanks a lot for commenting. My night care seems pretty stable till March (and my morning care person is fighting to keep my schedule stable too) but after that..... so I appreciate the offer. I really do appreciate the offer but am always relucant to accept because I worry because most of this right now is about maintaining minimum health or stability (which I seem to be losing), for some form of independance. Once I lose either the minimum health or the stability permanently, then I will be reaching out (if that makes sense). Meaning, I am taking the offer seriously but saying, "It's THAT bad yet" (which is oddly what I always say, even when the EMT's come)

I love the squirrels too, I keep hoping for more sunny days when Linda can wheel me down. But I am really forward to a video of me feeding 1000 tame DEER (but if they climb up the wheelchair, that could be BAD). Thanks so much for commenting and I hope my down days will be less and I get my amusement and laughter at all things (even bad things) back a bit more.

cheryl g. said...

See the blue fingers and 75 minute meeting is part of what sickens/angers me so much. As a caregiving agency (supposedly) it behooves them to avoid actions that will harm you like cutting into your vitally important resting times. I say to them... "Your mother was a hamster and your father smelt of elderberries." Motherfucking petty despots!

“I would like to see you again but until I go to hospital, I'll hold off on your kind offer.”

Are you off to hospital again soon or did you just mean you'll wait for hospitalization before taking me up on the help offer? Just let me know when a good time to visit would be. The only time I can’t come visit is March 2 -8 since work is sending me to Seattle for a week of training.

Can’t we share Angelina? Non-sequiter time… Have you read the “Venus versus Virus” Manga series?

Elizabeth McClung said...

Cheryl: Errrrrr.........Do I have to answer the hospitalization question? No, I have no PLANS to go into the hospital any time soon, it is just I guess one of the these days the EMT people will get a reading and I will end up in hospital (but I am sure that is a LONG TIME AWAY).

I totally have Venus Verus Virus (Goth lesbian manga - I have the anime series AND the manga - have you got The Last Uniform or Kashimashi?) I would like you to visit when coho do go, cause then we can do .....stuff, oh yeah, badminton testing with my other wheelchair! Or more important, do you how to hang a picture - I got Linda one for a birthday present MANY months ago, but we don't have a single butch between us (is it so sad)

Gaina said...

Tell the agency 'I can only please a certain number of people per day. Today is not your day and if you piss me off, tomorrow won't look to promising either!' these people really need to be reminded that they are there for your benefit, not the other way round.

Raccoon said...

This post is just...

I don't know what to say. A shotgun is more likely to do the complete job?

I read your descriptions and commentary on your staffing problems, and it reminds me of the problems I had. I couldn't hold onto staff, or I'd chase them away, or they'd gossip with each other in the office... having your own staff it's so much nicer, even with having to take care of payroll deductions.

Play the game out until the end. Take the gamble, it's not over until the fat lady sings, and other such pithy sayings. I'm selfish -- I've just met you, and I don't want to lose you yet.

Elizabeth McClung said...

Gaina: Oh what, now I have to be assertive too, my mother didn't prepare me for this, our tradition is simmer until ulcer then write a stiff letter - though your version sounds more usefull - I do wonder though what will happen when I tell VIHA/Juan de Fuca - "Nope, that doesn't work for me, why not consult me first next time?" - will my phone explode?

Raccoon: Shotgun - now that is the type of humor I enjoy. I think I just needed to say, I can handle the physical stuff even when I look like this (insert funky picture), I just can't handle being yanked around - so you recommend the independant route - so, trust humans again....oh so hard!

Don't worry, I'm not checking out, for example both hands are shakey today. But no, I just got so low I couldn't see sky, that's all - but that's why I put in the bits of the nightworker trying to put the brakes on our lesbian hanky panky (in my condition, sniffing her and leaning against her breasts is about all the hanky panky I was up for that night) - it isn't all dark, I still ask people to hit me in the head.

Veralidaine said...

Wow. Canadian lesbians dining in a Japanese yaoi themed cafe. That MUST be blogged. With photo, and video, of girl kissing in the yaoi cafe. It would totally make my week, maybe even my month if you do that.

Daisy said...

Dropping in to say HEY and don't have much to offer, except to let you know I am praying/rooting for you.


Neil said...

Hey, team!

Beth, bullets are messy and expensive to clean up. I cannot counsel suicide methods, or officially condone it, or I could get into trouble, I suspect. Not sure of the law there.

And since I'm taking you to task: back in mid-January, when you were advertising for a family, your said the adopters wouldn't need to put out any more emotional involvement than with a pet.

Well, dear Beth, I have news for you. Many pet owners care for their animals as much as they would for a human; the pet is part of the family.

And YOU, dear lady, are worth far, FAR more than any pet or animal, wehterh they be squirrels or 1000 deer around your wheelchair. Even if I haven't really met you in person.

Now, please report to Linda for a loving whack upside the head from me for your lack of sensitivity towards yourself that day.

(And try not imagine 1000 deer balancing on Beth's wheelchair)

As for the nail strips, have those incredibly stupid, stupid people ever heard of lawyers? Imagine some (imaginary?) 3 year-old coming to visit Aunty Beth or Aunty Linda, and said darling child comes out of the elevator with bare feet, and ends up with some dog-awful infection from the nails she stepped on. Your building manager must be on holiday, or she SHOULD be freaking about liability.

I'd suggest googling for a photo of a police spike belt in action, and it to the elevator doors. Maybe that would give those assholes the idea that they've inconvenienced you.

I can only echo other commenters' expressions of disgust over Juan de Fuca, VIHA, et al. And I would be happy to have you live with us, but we don't have the room until we win a huge lottery. Then we'll be living in a recreation of Warkworth Castle, and you & Linda would have your own suite. That's a promise. But we have to win first, dammit.

As for my "team" comment, just think of everyone who has commented here. Is there more than one or two of us who would not be at yor side in a heartbeat if we could afford to be there? While you advertised for a family, you have one, dear Beth. We're here on the 'Net, and we're YOURS, even if we are only virtual like this. But we all love you and I think of all of us as Beth's team.

Now supper has just arrived (East Indian) so I have to run before our Siamese cat runs off with the Chicken Tikka Massala.

Cheers to the whole team, and huge warm zen hugs to you and Linda.

cheryl g. said...

Do you have basic tools like hammer, screw driver, etc.? Start a list and your butch handyperson sister will tackle the jobs. I have lots of picture hanging experience.

Nope, I don't have and haven't read Kashimashi or The Last Uniform. Ooooh, you have the venus vs. Virus anime... cool!

Tayi said...

I never know what to say that won't sound foolish. But I wanted to let you know that I'm thinking about you, and as much as it all sucks I'm glad you're alive to write today.

Belinda said...

Elizabeth! Your blog won third place in the Canadian Blog Awards! Congratulations!

I watched your video clips and loved the joy in your face as you boxed.

FridaWrites said...

Neil, whoever you are, I'm jealous of the chicken tikka masala. I love Indian food.

Elizabeth, I'm sorry for the loss of your friend and the indignities and injustices the healthcare system foists on you. I'd also like to praise you for the pictures and video showing the difficult times, too. The societal message is that people with disabilities can "overcome" or do everything abled people can, only in a chair, but the truth is, we're not the same and only those living in the house with us (I'm counting myself here) see the physical limitations as well as the demands on time and resources imposed by medical needs and medical bureaucracy. I don't have an illness that is progressive/degenerative in the same way and thus don't have as much to contend with, but most people don't understand why I don't/can't do more than I do, or what it's like when things are at their worst or for my family.

Elizabeth McClung said...

VeraliDaine: Oh, a video, what a good idea, I am so going to do that - once we find the cafe, then Linda can sit on my lap and we can have a video. Sweet! Then a photo of the staff too! Maybe they can kiss?

Daisy: Thanks, I appreciate that, I'm rooting for me too, I think - that tends to change from day to day but most days yes, rooting for me (and you and all of you!)

Neil: Linda really liked your comments, I personally can't say because I have met some pretty personable squirrels but I like to think I that might tie with them for amusement factor. Well, in Linda's Family if they couldn't afford the vet, it was "old Yeller" time in the barn - Yikes! So, no, I've changed my mind, no one charge up here with a gun to treat me like a pet!

Followed your advice today and got Linda to take LOTS of pictures. And made a blog of it. Thanks for the slap upside the head (in kindness of course)

Cheryl: We have TWO hammers and a screwdriver and stuff we just are kinda pathetic. WE still have stuff from two Xmas' ago we have "set aside" to superglue - I mean how hard can superglue be (since I glued my fingers together, actually kind of hard)

Tayi: Thanks, I think a lot about you too, but thank you for letting me know and one time that gun regulation in Canada came in handy, though having someone come up in a wheelchair and ask to try the guns and keep putting them to her head till she finds one that doesn't shake should be a bit of a RED LIGHT to the store owner. Sorry, that sick humor thing again.

Belinda: Thanks, I do like hitting my coach and boxing in General, the chair is good because I learn patience as I have to wait for people to come to me - it is like Zen Boxing (now some Zen Buddist will beat me up for that comparison). Thanks for letting me know about the win, sorta, and congrats on yours!

Frida: Thanks, I am glad the pictures were of use, and that yeah, you know, we aren't all supercrips (though I am sure everyone else is, and I am letting the team down). Yeah, I wish there was some easy way to explain to people that becuase I see you when I am at my best doesn't mean this is how my life is - not that it isn't worth living, it is just way more complicated than "I get tired" - I mean even Fatigue has so MANY shades.

kathz said...

Belately adding my comments to day how cross I am with all the stupid, thoughtless or plain nasty people you're dealing with - and also to say how sorry I am to hear about the death of your fellow blogger. I think your daily life, in the face of so much difficulty, shows that you do have superpowers - just keeping going would be heroic but you manage to live, rather than just existing, and you keep telling the world about it through your blog.

Sorry comments have become occasional - it's not lack of interest or concern.

Belinda said...

Thanks for your grace, Elizabeth. When I read your post of this morning, I was scared to read your response to my congratulations and I thought you might think that I was being patronizing about your boxing--which I wasn't, but I was nervous... But hey, you will understand this: If you worry about everything people might think--you would never say anything! Thanks for encouraging me to take a risk another time.

Veralidaine said...

Actually, I think you might LIKE being one of my pets. They get treated better than I do! My dog had beef shoulder steak for breakfast, the cat enjoyed a chicken and vegetable stew, and the rats had fresh salad greens and blueberries (oh, and lab blocks- but you don't want those, they taste like cardboard). The rats all have their own fleece snuggly hammocks, the cat has a cat condo, and the dog gets to play sports once or twice a week and has more toys than most children... no Old Yeller here!

But I'm not sure my vet sees human pets.

Oh, yeah, and I ate a granola bar and ramen for breakfast. Spoiling that many pets doesn't leave much left over. On the plus side, hopefully I've gained enough karma to come back as one of my own animals in my next life!

ms bond said...

Not OK. Thats what I say about your care situation, the nails and apartment inhabited by the village people, and to your freaken dumb ass apartment manager. I hope she secretly reads your blog and is now looking for a bunker to hide in because a whole lot of people have her on their hate list. As for my hate list she's somewhere near the top...like sharing a spot with Hitler, Stalin and Pol Pot.
I know this probably will sound wrong or stupid but about your boxing tape...you are beautiful. I know it is almost impossible for you. I know it results in pain and pink stuff coming from your lungs but you are beautiful. Even with one yellow and one red arm. It was art (see..I knew that would come out all wrong I am not comparing to a piece of canvas or sculpture)

As for your living situation. You belong on the top floor. As a person you have the right to accessibilty. We all want you to be able to see the sky, be at the top, and damn it....I want Fran to eat her fucking words.

Elizabeth McClung said...

Kathz: Good to hear from you, sorry I haven't been over your way much. Well, I'd like to say I LIVE LIFE to the fullest but mostly I feel crap and try to not feel crap and then do as much as possible regardless (which might have a bit to do with the feeling crap part - as well as at least three people a day calling and making MORE appointments. If there was an alterative like a TV break room while someone else took over the body for a while, I would but up for that.

Belinda: thanks for coming back! And for your comment on the post about women of height. When I am free of the nails that bind me, I will take a wander over to your site. And maybe take a chance there too.

Veralidaine: Wow, you do have a lot of pets and they seem to have it pretty sweet! Have you managed to get any of them labelled as assistive animals? If you can get an assistive cat let me know (I don't what it could be trained to do except tell you when it wants food and affection). So, if I become your pet do I get my own condo too?

Ms. Bond: Thanks for the "not okay" about the carers. As for the boxing video, are you talking about the one of me TRYING to stretch, not like the other ones where I am smiling and getting hit in the head. I must have missed the beautiful part, cause it was like when you are playing soccer as a kid and you are trying REALLY hard and don't realize how totally pathetic you look. I'm not sure about the art - I thought I made a good video and chose good music and the whole two arm colour thing is very new modern but I was actually trying to touch my toes or something in the video.

Yes, I want to see sky and bird, and a little humble pie for Fran, oh such simple desires.

Dawn Allenbach said...

You absolutely should blog it all. It's who you are -- good days and bad.

Re: staying in Victoria -- I knew there were reasons (and I suspected one was Linda's job). I was wondering.

Veralidaine said...

Beth, I actually know secondhand of one woman who has a service cat. The kitty goes everywhere with her and alerts her if her blood sugar gets dangerously low by pawing at her and meowing! They aren't as common as service dogs, but still work. I was actually going to look into therapy work for my cat, but they want them declawed for safety, and there's no way I would do that to a kitty.

Yeah, the animals are spoiled- in my household you definitely want to be a non-human versus a human. They get all the good stuff and the humans get pretty much ignored. We do have a PS3 though which is about the only human toy I need... though if you came to live with me we would need a Wii so you can zone out and play video game sports on days you're not up to real sports. If you can swing a racket for badminton, you can play wii. Unless the staring at the screen bothers you- not sure if any photosensitivity affects you.

I've heard of assistive rats, too.

I don't know what service animal access rights are in Canada, but if you're looking to get yourself a cat over Fran's head, maybe you could train it to alert you when the diastolic fluctuates?

Marla said...

I am sorry to hear about the loss of your blogging friend. Very sad.

I am glad you shared the video clips of yourself when you are not feeling well. They make me so sad watching them but it also helps me picture what you go through better.

You do look so pale in when you were laying down with the oxygen on. Reminds me of how M looks after her vomiting spells.