Oh yes, the Word of Mouth program on the BBC 4 is playing on Tuesday (today) and then again next Monday. The website for it and the live feed is here.
I shudder at people who know me hearing my voice or what I might have actually said (or been edited to say!). Thankfully, that is past my five days so I can’t really remember. And however bad it is, and my reaction I guess the same is true (I won't remember in a week!).
Tonight Linda went to a support group for people in similar situations (dying spouses or parents); she was the youngest there but it was sobering to hear how many people are slipping through the cracks, and how many doctors are simply avoiding responsibility if at all possible.
But like I said, I nap while Linda goes to a group about my death. There were a few more, “Yeah, you are dying” things today – Beacon did another incident: management who lie to me or lie about me or try to say I said X, because the relatives are ‘used’ to those in care being ‘confused’ make me very angry. These people are the lowest of the low. They tried to call us at 11:00 and then sent over a person at 11:30 and claimed they had “tried to reach us all morning.” This was because my “angel of mercy” who overdosed me on opiates LAST overnight care, is not investigated, just sent on to another person (good luck!) and they needed to put another person in for tonight; but this person wasn’t trained. So they and my caregiver (who they said was to train them on oxygen) argued while I got no care. Then I was informed because of MY not allowing the training (which has to be done by an oxygen technician) I would not have an overnight care tonight. Anyway, lets just move on and try to figure out why my apartment manager needs to give 24 hours notice to come into my apartment but Beacon thinks they only need 30 minutes.
One of the great problems with Beacon and VIHA and other care giving agencies is that they don’t like that Linda is my medical point of contact and try to endlessly call me instead. This is because Linda, like them, is busy and at meeting and they have to leave messages. That irritates them. So while I may have spent Thursday and Friday trying to get ahold of my VIHA case manager; she called me today because she didn’t want to leave a message on Linda’s voicemail. Well, I guess this means they need to plan ahead. The whole problem is that everyone who makes decisions leaves on Friday, and returns Monday. So while I had no one scheduled to take care of me tonight since Friday mid-day, nothing was done until the manager looked at it on Monday (today, when I needed the person) and tried to jam in, lie around and force a solution. Disabilities however do NOT take weekends off and it vexes me that a Care giving agency doesn’t ‘get that’ – that part of seniority is that all the decision makers get the weekend off.
Well, at what year of having a disability do we get our ‘weekend temp’ to come, as WE transfer all of our disabilities on to them, saying, “see ya Monday!” cheerfully while they start screaming from the pain?
Because that is what I want: I want to wheel down on Friday, grab the head of the RN manager and somehow with flashes of lightning, transfer all my pain and conditions on to her. Then as she goes into a Grand Mal, I stand up, step out of the chair and say, “See you on Monday, please don’t call, it’s my time off!” Because that is how she treats me and so many others under her care. So it might be illuminating if she finally “got” that there is no ‘time off” in home care. And that is an ablist and an “us” versus “them” attitude.
Beyond that, I did a bit of postcards this weekend, so to finish, instead of fantasizing about inflicting more pain on those in Beacon – or taking up my managers ethics and calling up her children and trying to trick them into agreements (like when they weekly/daily ignore the person with medical power of attorney and talk and lie to the person who is just back from hospital), I will show a few pics. How about some nice anime girl pics, I tend to LIKE those a lot!
And here for equal opportunity, are some of the boy pics, admittedly, some of them are boy/boy pictures - no, look closer, that is a guy hoisted in the air (oops and one girl/girl pic).
I worked too hard this weekend. Or rather, doing postcards as I have been doing them is no longer possible for me, so I will have to change. I am simply no longer able to take two or three days of long stretches of work and get 30 postcards done. Not without hours of seizures or hospitalization situations. I did do 25 postcards this week and another 6 today but this is the last weekend, after this, the total weekly number will drop a bit as I try out new ways to get postcards created and sent out.
But I’m not out for the count yet, it is just, even at my best, I am getting noticeably slower and weaker. And postcards is a sort of fixed activity which demonstrates that best. It is not what we wish would happen, but it is what we expected to happen. Like I said, Death isn’t really romantic anymore, is it just part of what I face, what hinders and limits me.
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25 comments:
Dear Beth,
Yes, I wish you had the power to wreak your revenge on the evil Beacon woman. but it wouldn't be vengeance - more like justice.
I spent last week making phone calls, trying to insure that my infusion would happen this week. Thought I had it mostly sorted - appointment scheduled, nurse confirmed, several calls to the pharmacist detailing the problems of the last infusion & making sure they would send the proper meds,supplies &a good pump. Called on friday to check & go through everything again. Asked when my shipment was being sent out (they send the medication & supplies directly from the pharmacy to me). It was than that I was told that the pharmacy was not sure if they would send it on Monday or Tuesday as there was some paperwork from the insurance co. that had not come through yet. So on Monday I call back & find out that they never got an important contract set up & so cannot provide the IVIG. My insurance policy is a little different as my IVIG medication is through my pharmacy (medication, drugs) benefit.
So appointment, yes, nurse yes, equipment & supplies for infusion, yes. Immunoglobulin to infuse No!
Called my case manager at the insurance co. She told me that she had told the home care agency all about this part of my policy weeks ago. And yet said agency "just" found out about it last Friday? Anyway, now it is in the hands of the case manager's supervisor. this supervisor is the one who decided to switch me to the new home care agency. So at least there is some small sense of satisfaction that she will have to deal with fixing the mess that she created.
Now, I don't want you to worry about my IVIG. It will be worked out. I'm sure my doctor will be calling them too.
About doing the cards, I think you'll be able to find ways to work on them for short periods of time. You already have stages that each card goes through. I have various things ready in different stages. I can pick up something & work on it for 5 or 10 minutes. And different tasks, some which require little concentration, not much energy, but little by little things get done. If you have more time but little energy you can work longer on the easier tasks. Sometimes I do coloring which uses my left hand (I'm left handed), but I cut with my right hand (never had left-handed scissors growing up), so I can alternate which hands I using. And when your really into it & want to push through & get those postcards done, it's hard to stop. Maybe you should set a time limit. Set an amount of time you're going to work - don't base it on how many postcards you've finished.
Sharon
Firstly: Collette's family has experienced this kind of "bushwhacking" behaviour from the people who are supposed to care for her Dad. He has dementia and they never miss an opportunity to go against the family's wishes by saying "Oh, but Nick insisted" and we would say "Yeh, but Nick thinks it's 1959" It makes me furious, don't these people have any pride in what they do? Don't they have any feeling? I don't approve in cutting corners in anything you do but this isn't manufacturing widgets, this is a human being we are talking about here. Collette's family tends to be very passive when dealing with the health care system and with us so far away, it can be very frustrating; we seem to have to fight to get the most basic of things done for her dad
OK, more fun stuff, like the postcards. A girl with a katanna and a big gun? Perfect,thanks.
And of course, pace yourself Beth. I understand how important the post card project is to you, but your health is far more important.
Don't know what to say, except I wish the pain transfer between you and the bitch at Beacon to be permanent. And I resent that my efforts to be a compassionate person are continually derailed by this individual. A pox upon her name.
Don't work too hard. Postcards are great, but I'd rather have a Beth in less pain than a postcard. And speaking of which - my niece and nephew got the card! They loved it. Thanks so much.
Reality is such a kick in the arse, isn't it?
You mean your oxygen certification and medical licences have lapsed? Silly Beth, now you can't train your doctors.
Beacon is headed by Cthulhu, I presume?
My Beloved says someone should get a class action suit going against Beacon, and name the BC Minister of Health and the Premier in the suit too. I know the words to that song, though, dear Beth: too much work, too slow in getting results, and Beacon's the only game in town. But they really ought to be called to account. Killing clients just isn't cricket.
I like the anime pictures too, even the boy/boy are so androgynous you can't tell sometimes they're both guys.
Um, Yanub? I'm afraid that I have to side with Beth and cue the muted trumpet (Charlie Brown's teacher's voice was a trumpet with a mute _ Wha waa wawa waaa wa wa): I simply cannot understad or find justification for the term Sentai except in Japanese military history or with reference to the Power Rangers. Enlighten us poor mortals, please?
Zen hugs,
Neil
I've just this moment finished listening to the programme on the BBC, in which you got a very brief few minutes to make some very interesting points, from a patient's perspective, on the topic of pain and doctors. I hope the actual pain caused by the undoubted effort of doing the interview was worth it, because they only used a very short bit of what I imagine had been a much longer interview.
It reminded me of a time when I and a group of women had been on a hunger vigil to raise awareness of domestic abuse (in support of a woman on hunger-strike in prison). Channel 4 came along to film and interview us, took the whole house over for about an hour or more... and then used about 10 seconds in a morning news programme. Was it worth it?
I do hope that in your case it was... and I certainly think you made an important point about the difference between how pain feels to you (or me or any other individual patient) and which box gets ticked on the doctor's symptom list.
And I do feel I know you just a little bit better having heard your voice, by the way. Love & peace.
Oh, come on. Death is way romantic. I saw Moulin Rouge, and it is obvious that the dying sing and dance right up to the moment where she's hacks out her lungs in a bloody, but short, coughing fit, wrapped in her lover's arms. Come on, where's your dancing shoes? (Yeah, that movie really irritated me. Can you tell?)
It will be tricky listening to you when BBC is featuring the program, but I see that there are archives, so I guess I will get my chance that way. I can hardly wait.
Beautiful cards you are choosing for someone. I showed off at work the latest one you sent me, and everyone said they had never seen one like it and had to hold it.
I've decided I definitely want the weekends off from disability since other people get weekends off.
Off to check the BBC!
What does Linda think she is doing, having a life, when Beacon might want to get hold of her? Does she not realise their agendas are SO much more important than hers? Why should they be made to wait? Planning ahead? What's that? Don't you know that it's hard providing a service like that?
(/sarcasm)
Grrr. Beacon are still annoying, it would appear. I'm being too polite to use the rude words I feel they deserve.
I'm listening to the radio show at the moment. I'm not up to you yet - you're not in the first 10 minutes. Alas, I think I shall have to leave work before I get to the end of it, so I hope you're in the first 20 minutes!
Exactly what are the Beacons trained to do? Scary! It's like having airpilots not trained in flying.
Lovely cards
I'm not satisfied with the doctors' response after yours--we have to remember that they are still approaching pain as clinicians and have that background.
Your descriptions of pain are poetic, but you are a creative writer--that aspect of you is integral. I imagine that people with other backgrounds also choose their language based on their experience. Although pain does exist, there is no objective way to describe it and no way to completely convey the sense of it to someone who hasn't experienced it. If I had to describe my pain this week, I'd use the words "suffering" to describe its effect and "gnawing beast" as a noun to describe the way it sits on my hip, SI joint, and low back. Words such as burning and aching come to mind but I don't know that I could choose between sharp and dull--both and neither. I know it's qualitatively different from other types of pain I experience, such as from muscle spasm or breaking a bone, but words fail me if I have to pinpoint more closely. It awakens me so that I stand up in the middle of my room in the middle of the night to try to catch my breath so I don't cry, I try to sleep standing up, it sometimes makes my blood pressure drop to the point of passing out--these are effects I can describe but still don't convey exactly the pain experience.
It was lovely to hear you speak!
I want you to be able to transfer your condition onto the Beacon managers as well. I say for a minimum of 2 weeks so they can really get a sense of what it is like.
Okay I confess I have a list of those I want your condition transferrred to and some are noted for permanent transfer.
Such cool postcards!
Good news: the bear and her cub that were treed by my office yesterday are out of the tree. Bad news: We aren't sure where they are in the area so I won't be walking the woodland trails on my lunch breaks for a bit.
I like the yaoi cards! The girl second from the left in the top row is nice, too.
So I think I am feeling a teensy bit of your pain today-- tore muscles in both thighs carrying a heavy desk up stairs. All morning my legs have been occasionally notifying me, "Oops, time for our break!" and then buckling for a couple steps. Urgh. If this is how you feel x100.... well, I would be leaning more toward "rampaging with wheelchair-mounted gatling gun" than "send lots of postcards."
Beacon sucks. They suck so much. I wish I could take your pain away and make it suddenly strike the Beacon people at random, in the middle of the night, not every night but just every few days, and see how long they lasted before going completely insane.
You just do what you can do around all the BS that Beacon and VIHA pile on you WITHOUT giving yourself more seizures/hospital trips. What's most important to us is YOU.
*gentle hugs*
Wow - just listened to the BBC and first off, my voice is probably the worst voice I have EVER heard in my life, when did I nasally AND raspy and oh my God; how much has my voice changed!
Second, the doctors are completely from the beginning talking as if they are the ones doing the patients a favor (particularly the 60 year old one) and then all this best practice stuff - which I never had in my years of going to NHS UK hospitals (but since Wales scores like 38% on best practice, well, I guess there is some utopia which uses 80 words - I asked nurses being trained TODAY in Canadian hospital - they have 5-7 words for pain - that's it. Doctors the same - if anyone has heard a doctor ask if their pain is "drilling" or "gnashing" please let me know).
Second, wow, the hostility that came out of these people, that by NOT using the language (I was asked to describe my pain, I did), they are angry - one talks about how I must have spent my time coming up with the most obscure metaphor possible (Saying "God is reaching into my heart and snapping it back like a rubber band every few beats" is not particularly obscure to me: staying 'throbbing' is) and is quite irate. Which makes me think: okay, I am coming in an ambulance in extreme pain and you are ANGRY with me becuase I won't TALK the way you WANT - but earlier you are claiming that there is total give and take in the patient/doctor communication - well except when people don't talk like doctors want them to. Which is entire like I have found. One doctor himself (the older one) ADMITS that the very phrases which annoyed him as a doctor as not precise and as the female doctor says "are meaningless" (she means in terms of diagnostics as you are 'supposed' to use the right words so they can diagnose you), happen to be the exact description of what he was feeling. As in, the reality of it WAS the description people had given to him and which had annoyed him. Yet, the way the doctors talk, the problem is.....with the patients not using the words they have set up. So it is a bit of "Communicate my way, or else!"
Astounding - I am a bit frustrated that 25 minutes comes down to a few minutes of HORRID speech which they get to pick apart becuase I would have LOVED to ask a few questions back since how many times have people left a doctors office with a phrase the doctor has given them, which has no meaning to them - is not explained. I do all the time: left the hospital last time with the doctor saying, "Atypical Seizures" - what does that mean, what does that mean for my life? But the language is not for me, it is for them, amoungst them.
ARRRGGG! Oh well, like I said, I will forget in a week!
Looking back, I think I mean "how you feel divided by 100." As in, my ouchy legs are 1% of ouchy Beth.
Hm.
Math was never my thing.
I was reading about a woman who went into a hospital saying words to the effect of that the devil was in her chest. Rather than treat her for the heart attack she was having, they left her in a side room, as she was obviously mentally ill. She then died. Apparently, one must use the appropriate language or suffer. I wish I could find the blog where I saw that story first...
Your part was after 20 minutes, but I stayed late at work to listen to you. It was very exciting listening to you speak - I always like it when I get to listen to the voices of bloggers who I follow.
It kills me to see how thing are in health care. Families have to worry constantly about the care we receive. As Vic already stated if my family had any balls they would fight part of the issue is they are secretly hoping that the care will kill my dad (but that is another story) With all you have to deal with it amazes me that you had time to wish me well and be the nagging voice in my head when I was thinking of taking the ride the last 2K's on the first day of my walk (the first day we walked 34K and the last bit was killer) Your stong voice kept saying you can do anything you put your mind to. Well thank you because you were right I can do anything and the doubters at work were shocked that I made it. So for real thanks.
ALso I got the coolest card from you today. there is no such thing as too much bad boy. I loved it it was a great celebration for my accomplishment. Know during the walk you were with me and I was thinking of you. New presents are in the works.
In your debt for the way you challenge me
Collette
Neil, I added a comment on the previous post to 'splain, but so you won't have to wade through it all, let Wikipedia be your guide:
en.wikipedia.org/wiki/Science_Ninja_Team_Gatchaman.
A sentai team is a five person team, and was essentially established as a trope by this particular anime. And now, your geek education is that much nearer complete.
Collette: Thank you for telling me that, I cried because right now everything is very, very hard and I work and work but nothing seems to matter. So your telling me that I helped, or that the "inner voice of me helped" you make that last 2K was something that helped me to hear when I am rather low.
You accomplished a great thing - you dreamt it, and you did it! And everyone can see the pics and videos of her doing in over at the Hairy Edge.
I'm glad you got the card! And I'm glad that I could in some small way be with you. Shame on the doubters. I did not doubt that you would give your all - People can accomplish great things if they just try. Thank you for trying and raising money for a better world.
Sharon: Yes, I wish I could have the power to transfer our conditions just for a day - the people who run this have an ablist view, as they drive away, thinking, "I have to compartmentalize my life" because of course all the people with Lupus and Rapid progressive MS and CFS and other condition they take care of can "compartmentalize" thier life and make Lupus keep to a plan and have instead of a work/life balance have a Lupus/Life balance where weekends are sacred. They are in charge of our care but know nothing about chronic conditions. We are NOT our conditions, but we are not able to pack them away either.
Arg! And for ONCE I thought this would be the right month, the perfect month, the month it happens and all goes together!
Yes, I think I just need to make the stages into stages - do 10 postcards of stage 2 and then the next day 10 more.
Victor: It frustrates me that half the time they treat me as completely lucid and able to make decisions (when they want me to counteract an instruction from Linda) and the other half of the time I am treated as everything I say is ga-ga.
I agree, we are not wigets and people both caregivers and those in care are not interchangeable. I don't they do have pride, certainly not in the satisfaction of thier clients (maybe there should be a sign like macdonalds: '29,000 unhappy clients' which can be updated monthly. today was the first time I had a care giver who said, "I am a professional and I don't do that and I do this because I take pride in what I do." - how long have I waited to hear that?
I'm glad you like her - you might like the Anime series called "The Third" - about a girl called "SwordDancers" and her sentient tank in a post-apocalypse world who take on small mercenary or delivery jobs for hire.
Lene: I am angry too, but I don't know how to resist, right now I simply trust no one in the health industry: no one at all, Linda will talk to them, I won't. Becuase I have yet to see any doctor, anyone from VIHA or any caregiving agency that actually CARES about my health or quality of life. And that your efforts are being eaten by this angers me even more.
I'm glad they loved the postcard, I have a new one to start for them. Thank you for letting me know.
Neil: I think Cthulhu is one of the lesser God who refers to the Old ones - Beacon is the old and eternal one who brings a world of suffering (they have just taken over the Meals on Wheels program in the city as well - yup, they own thrift stores, they own ALL the caregiving and now the Meals on Wheels program - I am truely in thier clutches).
Actually it turns out the ombudsman IS investigating elder care by Beacon, maybe he or she would like to hear some of the stories of care for the not quite so elderly?
AS for the boy/boy - that is the fun of it, the androgyony, the whole, "wow, she's nice.....wait, that chest is a little too flat" and the whole, well who wouldn't fall for something that lovely (whichever gender).
KateJ: Thanks for Listening, I think the program where they were stuffed full of doctors TELL us, informing us on how we SHOULD communicate and then they jumped on me (the only actual patient) when I couldn't rebuttal, as if I was trying to be difficult was illustrative of the arrogance and difference in viewpoint (certain not communication of equals then?). I wrote more about it below - thanks for listening!
Yanub: Oh right, where ARE my dancing shoes, and where can I get a diagnosis of whatever she had.
If you click on "Listen to the program button you get the whole thing - or can skip to twenty minutes where my horrid voice appears (the one without the oxford accent).
I wanted you to be wowed by this one - so I am glad.
Frida: I want weekends off too - and I agree, they were not WANTING to listen, but just diagnois. And to say (as they sort of did) that they are too dim to understand a metaphor. Well please bring in new doctors. I was Shocked at the female doctor who said that the females patients who said it was like barbed wire up and down the spine was "useless" - my thought was - if this is what multiple patients are saying, you had better figure out what it means becuase THEY, not you, have the condition and are trying to explain it to you - instead, she discards it.
Thank you for describing your pain - I think they would have tossed you aside too since you didn't use the right terms in the right order but as you say, how can you convey pain to someone who is pain free? I tend to (if they are male) take a tennis racket to the balls and then lean over them saying, "No, the screaming isn't really helping, I need you to say is that throbbing, gnawing, drilling or radiating?" We so often work so hard to get through the pain to communicate at all - and it is deemed insufficient. God, I am SO sorry you had to hear my voice - I used to have a better one, honest!
Abi: Exactly, the fact that she needs to be a full time caregiver AND have a career better than thiers in order to afford my medical things doesn't phase them as much as "I want Linda now." - Well, to Beacon, you aren't a child, Linda isn't your mother, learn to deal with it and plan ahead.
Sorry you were late! If they had given me an idea on how they were going to use or edit it - I did speak about 5 times longer than they used (or seven times), but then, it was one patient versus about 6 doctor, many male and older. Which I guess is them treating me as they treat most patients so that Was reflective!
Another story (a good one too), I talk to people every day this week about female heart attacks and EVERYONE I talk to has a story of a female being sidelined for not having the "right" type of heart pain - someone should tell the doctors eh?
Anna: Yes, one does wonder - also why take the one type of people with medical training OUT of the care loop and make them administrators - it is almost like willful ignorance?
Cheryl: Horaay for the bear and mom going away - no one will be ripped an arm off for going, "Oh so cute!" and getting between a mother and child (becuase even in humans we just LOVE it when someone picks up our baby and then starts to take off with it!)
I do wish I had the power to take a holiday and the power to make these people understand - the care I need is more intimate and yet, the more they want to pull away - the more dependant I am, the more they tell workers to call 911, the more I cannot speak, I cannot breath without help, the more they deny me these things.
Veralidaine: Oh, do you like Yaoi cards, I will change some of the cards I send then?
I am sorry you are in pain. Pain SUCKS whoever has it. And while I may have some, It is not a commodity, it is free to all - and it sucks for everyone who has it, arthristis, nerve pain, muscle pain - it all is bad and I hope your pain is recovered soon! I do wish that Beacon had a bit more emphathy, though. They haven't even managed Pity most of the time much less sympathy or empathy.
I write postcards and send surprises becuase I want my life to be more than just 'surviving' pain or a condition - I want it to mean something and if it has no meaning of itself, I will create meaning, I will push through it and create meaning so that while I am still in pain, something good has happened too.
I get so angry just reading about the health care or lack of it that you are receiving. I keep hoping that someone somewhere will read what you post and it will make a difference. I like a lot of the post cards that you took pictures of. I admire your dedication to them. I am terrible about starting things and then becoming disinterested. I scrap booked for a while and loved it deeply(big picture nut), but I have fallen out of the habit. It was so nice to see a finished product. I used to celebrate each semester of good grades with a scrapbook, but I have not done that in ages. I hope that Beacon gets their crap together one day. I'm not counting on it, but maybe it could happen......
The voices of people I know sound much different on the radio than they do in person, so radio is not fully representative--that can make your own voice sound even more different to yourself. I can hear a lack of oxygen from knowing others who have reduced oxygen capacity--but I don't think this is something most people would recognize. Your voice is still beautiful and strong and there were no mistakes--flawless! It's nice to have a touch of you since we can't meet in person. Thank you for sharing the show with us.
It struck me, while up in the middle of the night trying not to hurl from pain, that the doctors completely undid their "we're all empathetic now" argument from the beginning of the show. That puppy unraveled really fast.
"Here at Beacon, we're not satisfied until you're not satisfied!"
How's that for a motivational poster? You can find more at despair.com.
Dear, wonderful Beth: cut and paste Collette's comment into a nice poster, put it on your wall, and if you ever even TRY to think that you don't make a difference, go and read Collette's poster. You, my dear, sexy, self-doubting Internet niece, are far more effective than you think at swaying people's thoughts, you have more credibility and are making more of a positive impact on the world than ANY of your doctors.
Oh yeah: Collette: Congratulations on the walk, and doubly so on such a lovely description of it here.
Zen hugs all aroundm
Neil
Frida: your lack of oxygen comment cheered me up ("That's what's wrong with my voice!") - and yeah, scary that the guy who got really angry with my metaphor is not ONLY a practicing doctor but TEACHES other doctors in communication....Zowie!
Neil: See, not sexy anymore now that you have heard my voice, just....er...strong....like...drank a bunch of drano strong.
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