I am afraid that both I and my trusty computer went “BOOM” last night (my 'boom' as least was free...that time!). My computer blue screened anytime it went on the internet which indicates new motherboard, new harddrive, both, hard to say. I on the other hand felt an aura while doing the postcards for the new requests and only made it facedown to the floor before it started, at which point things get hazy because I had several, and sprained things like my neck and wrist and at the start of one felt myself losing fecal and urinary control but I guess the gift of retention is while you take 20 minutes to pee, you don’t always pee yourself! However a final seizure series later wiped out my speech center, or that what Linda says is her ability to understand me. I now have a little French, a little Spanish, and can say some words but it makes my head buzz and my vision go dark and often I can’t remember what I said. But living IN my head doesn’t hurt, so let’s go with that for a while, okay?
First off, I have been concentrating doing such a quality job with anime pictures because a) I have been getting anime art books when I can at 75% off, and a few from Japan directly now and then for about $20-28. And b) Because most of the time I look a wee crap, you know, face ashen, hunched over, etc, and I don’t want to bring down the tone of this blog. In fact I think the pictures give added value to the blog, while me looking like some pupae fresh from cocoon with slime trails is um, less fun to look at. In fact I use more foundation now and put it on every day because I was tired of the comments from the caregivers (“Oh you look so much worse!”, “Wow, you’re so pale!”; they must have a course on how to make the client feel comforted) . But here I am, looking not too bad. Some could say I am thinner (or that my head is smaller) but I prefer to view it as that my ears are simply doing a late growth spurt. That my two ears are about half the size of my head shows what a bang up growing job they are doing.
Second I guess is to try and tell you the conflicts in my feelings about being taken care of. This means I talk about an unmentionable: money. I get a biweekly allowance and spend it on gifts usually (and artbooks!) and am helped by Cheryl and a bit by Linda for buying postcards. One person mostly pays for postage but a few others have been helping out in that lately. I bring that up because the finances of dying or rather having a prolonged and severe illness cannot be escaped by the one who is ill. Whether that is the Gatorade I have to drink ($1.25 a bottle on sale, 2-3 bottles a day), to the medications I take. And right now, because my current GP won’t move me into harder opiates I have to take 3-4 different painkillers, as will as 2-3 seizure meds, as well as pills for my immune system, for strokes, for my heart and others. Linda doesn’t tell me the cost but I know that just 1 pill I take 3 times daily cost Linda $1 per pill. I have recently had to increase most of the pain, seizure and heart pills by a factor of 2 or 3. When I see the minute pauses Linda has about choosing food, or the other signs of financial worry, it is hard NOT to want to delay in having pills. Who wants to go, “Oh well, you’ll just have to figure out how to pay this off when I’m dead – pass those high price pills!”
This, along with the absurd costs of everything disability related is why I am often overcome with the feeling of being an unbearable burden. So I frequently skip or refuse my pills. However, as within 24 hours I am usually screaming and being held down by a couple people or in a depressed heart and seizure cycle that leads to the hospital ($86 for the ambulance ride), in the end I take the pills. Until I forget I’ve done this “problem solved solution” before and try again.
Because as I grow weaker, as more systems fail, I become more and more dependant on others, which is Linda, a little bit on home care and those she hires. Normally family would help out, however, my parents, after I talked with them over the phone and counselled them on how to ask their GP for tests and what medication to use now have a new lease on life; a dramatic life improvement. My mother finally agreed after I was exceedingly blunt to try the pill created for Fibro and now has a great quality of life; which she told me in a card with a $25 check (so I do phone consultations, for um, $25 I guess!). My father has heat related palsy and is more stubborn but has some better quality of life and has decided after reading carefully about the postcard project, that as an ex-minister, this is the sort of project of giving he supports, or so he told me in a letter which had $10 in it.
Why my parents mail me letters once a month or so when they live within sight of me, I cannot say. My father indicated that this $10 was half of his entire allowance (at which point I wrote to tell him that it is not 1970 and a grown man of 2007 can have more than $20 a week, and I returned the $10 – well if anyone told me they ONLY had $8 after their assistance check/cheque and were sending me $4 I would thank them but return it because $4 is not a large cushion of savings for someone with a disability – I pointed out to my father that these principles were taught to me by HIM, so sorry, and thank you for your concern but no thanks.)
I am sorry if that seemed to go nowhere but it does have a point. I have spent my life solving problems by getting jobs or overcoming adversity and at one point worked five jobs; I worked a full time job, then worked another 39 hours from Friday at 5 pm until 4 am on Monday and then worked the full time job as well as two night jobs. Now it seems due to government agreements that the contributions I made will help others not me. That I have indeed worked year round for over 20 years (I was one of the first to work at the ‘unage wage law’ of California), and have not yet been able to claim anything from unemployment to disability. But that was okay, because I had the degrees now and could get a university job, even if only research and have those benefits. Except that didn’t quite happen. And for a while I applied for jobs and worked in trade while in my wheelchair, but none of the jobs I did or things I wrote, including BBC ended up being paid. Nor really was I seeking that at the time (It would have been NICE!), I was trying to find a paying job in town but now that is far, far beyond me. Indeed so far beyond me, at times I wonder if people aren’t thinking when I say I am disabled, “Hey, I’m disabled, I have impairments, but YOU, like dude, whatever you are is SO FAR below me, that I wouldn’t call it Disabled; breathing maybe, but not disabled.”
Yes, so is someone who needs care for a majority of the day disabled? And when the main aspect of their care is to keep them alive, or minimize the damage to their body?
The other thing I have found with long term (or for those who consider 8 years or 10 years or more long-term; short to medium term care) care is that there is guilt and there is fear. I have guilt because I am watching Linda become tired, trying to work two jobs; one to keep insurance and progress her career, one as caregiver. I have guilt because the joys we had as Able bodied or even when I was a bit healthier are gone, which leaves Linda with the bulk of trying to go out, or do something together, or more often just sleeping or taking a hard needed rest of her own. I would change that, but I can’t. And as I change, more and more mentally and physically, my ability to do anything to assist her is curtailed. That is guilt.
The fear is knowing that while I am the person making her exhausted she is ONLY thing which is keeping me from NOT having the medication, to having to be tied to my bed in restraints while I scream and scream in pain. They don’t have a place for me at the hospital. I would be placed in the only space available, either a facility for the indigent, the homeless, a mental facility or a seniors home. All would probably try to refuse me due to the level of medical treatment needed many times a day. The hospital would refuse me because their job is to stabilize people to get them OUT – to places elsewhere. So wherever I ended up, I would not be wanted, I would received a minimum of care and it would be an incredibly wretched existence which would dramatically shorten my life span, and I would be SO thankful of that. I want to believe it is still last year or the year before, that we have options, that we have stability, and I will be okay, but as I get worse, and worse and Beacon steps back going, “We don’t do medical” that fear grows.
The reason I talk about this is that we were going through a very bad financial patch for a while, which I don’t think I blogged about. I don’t remember what started it, probably some medical cost but I don’t know why because a) it is WAY outside my time frame to remember, no matter how emotional and b) because my recent round of seizures and perhaps a small brain bleed have made that impossible today and probably forever (Oh, when you can taste the blood in your mouth between seizures, that coppery taste in your nose and your tongue and the back of your throat and then you feel it starting again, it is like being alone at the bottom of a mine shaft, you know there is light up there, but are you ever going to see it?). Anyway, that period of crisis ended with a NEW crisis over two weeks which took several hours a day and several trips to the US because Bank of America made a mistake and then they made it several more times turning my account of $68 into -$335, not just once, but after working with them for several hours a day for a solid week, they did it all over again. And this is due to a ‘hidden’ $25 overdraft which IF USED, though you don’t know it exists, charges you with $35 for each use, and if you are like me, buying $6 and $8, and $13.99 online – well, even before you get to No Funds, there are some pretty huge charges. Plus it turns out that in Washington State when Bank of America took over SeaFirst, they never were able to integrate the two computer systems, which means, when you talk to the manager of a bank, or of the district says, “No worries, there are no charges coming in” that you can be hit that night with an NSF fee that has been on the OTHER computer system and lingered since last week but just now decided to hit your account (by the way, withdraws are done BEFORE deposits to ensure maximum fees). So I spent two entire days and many seizures trying to remove this “hidden” $25 overdraft that I had not asked for.
After many arguments with supervisors I ended up with the manager of the ENTIRE Bank of America Service Department at their center and we talk and talk about how the ‘system’ is supposed to be there for the people not the reverse and she goes, “Yes, this is getting ridiculous, let me just take that overdraft off.” A few minutes later she says in this voice of wonder, “I can’t, I, it is saying that I DON’T have enough authority?” She said that the Bank Manager would. Well, more trips on the ferry, more seizures, talking to the bank manager as it happened all again a few days later. And Linda had to keep changing money from US to Canadian and back again (which is a good way to make a large pile of money grow small as the bank takes 7% or so each direction). After 2.5 hours I got what she did not, a complete reimbursement of over $300……AND the email address of the guy who would like to “continue this great conversation some more!” (There are times to ‘come out and be proud!” and this wasn’t the time) It turns out no one in Bank of America can remove the $25 hidden overdraft, it is implanted in the computer code by Visa. (Visa not Vista – one is an evil empire, the other an evil operating system)
Soon after or during this Linda was first diagnosed with a disability/impairment, and had that confirmed by her doctor, who will be meeting with her ever few weeks to work on solving it. Meanwhile, I was broken from my “all is okay” bubble because I did not have an allowance the last period, nor all of the previous. Which is totally fair, but something Linda wanted to avoid me knowing because when I worry about money I do things (like call Bank of America for 7 straight hours), then I have seizures, and seizures, and depressed heat beats and breathing and then I try and do the same thing the next day. And she doesn’t like cleaning up the mess, besides seeing me in that kind of pain.
The money from the book faire, which I help price and select was a couple hundred and was to be a back up pot for postage and my time problems which CAN cause money problems (Linda explained that if I have $40 to spend in a week and I spend that, and then I have seizures or forget as it passes the two or three days that though I don’t remember spending it, that doesn’t make it ‘a new week’ even thought I THINK it is, so when I spend $40 over the NEXT few days=problem – this it seems has happened – we are working on how to fix it without making me terrified about money all the time). But because of the last month we used the money instead for groceries, and medicine. I can’t really talk about Linda’s health and disability because her employers, who were discriminating against me through her are now just going after her (and read here to find stuff to use against her). And though they require you to get an ST02 form (which you have to pay $25 to be filled out from the doctor as it is three pages long instead of the notepad sick note) to get short term disability, they have required her to get that for a single day’s absence. Also, on the form, only the occupational nurse at the Public Sector Agency will know what is on the second form, which states the actual disability and medical issues (you are NOT required to tell that medical information to your supervisors or others due to medical confidentiality, the form simply informs them what accommodation needs to be made – in this case, half days for Linda). However, though the other half of the day is covered by STIIP, it only covers a portion (50-75%). Linda had given the note and it been accepted and thus acted upon, she was already working half days.
On Friday, Linda’s supervisor and the head of the government section approved a statement that Linda’ supervisor, though he/she did not have the medical details (as those are only available to Linda’s Doctor and PSA’s Occupational Nurse) did not feel that she had provided sufficient information and was retroactively withdrawing her STIIP benefits and pay (including the half days she/he had already accepted). Moreover, she/he stated that they had made the decision Linda does NOT have a disability and that Linda WILL show up for full time work Monday and here on or face consequences (By the way, Linda is a government MANAGER, not like, a store clerk or anything). It is winter for Linda right now, weather, health and workplace. This not only counteracts the doctors’ direct instructions for Linda’s Health, the same doctor who wrote up the ST02 but also PSA who holds the notes and medical information. They have basically told a person in a wheelchair, “I think you are lying, so if you don’t walk up those stairs, you will be disciplined or fired.”
Friday was payday, which meant we made it out of the darkness. Well, except with her supervisor retroactively stripping her pay, and our computer dying we weren’t seeing lots of light. This is not a good time. While Linda gave me the choice to return to a ‘safe space’ after the bank of America issues, how can I literally lie there, knowing she is currently disabled and being persecuted? Except I have to, because I don’t have any options, but as least I can be here to support her emotionally. But, like so many others dependant, I look to my present and my future and I sometimes get terrified. They are of course, threatening her job because without the insurance, there is no way we could afford a week much less months of the cost of well….Me (or the costs of modern medicine). And there are no other current options in Victoria.
So that is where things are today. Because I have stamps I have been sent and postcards, I am doing postcards tonight. Because while things seem helpless financially, and I am helpless physically, I can still do things and try to make a difference. Plus Linda made me promise not to kill her supervisor. That doesn’t stop the guilt and emotional pain I feel, every time I am handed my BOWL of pills, looking down into what may be keeping me going, but at what cost to Linda? All the money for Seattle, and the concentrator that was donated, I asked Linda to return when I believed I was going to die like within a few days.
However, I am not dead. And Linda says the money for Seattle is still there, and when we get the final signature and some tests done, we are off. But right now, we have enough to get to Booth-Gardner, to get into see the doctors, and to have about 30 minutes of tests. I am on the waitlist for a brain MRI and a 40 minute EEG next week, if we take those down with us, the HARD data for them to look at, that saves us about $5,000 – tests which Blue Cross has specifically told us, “We WON’T cover you.”
I am sorry that I am talking about money which you are only supposed to talk about when you are making it or have a lot of it. Yeah, I know that I only remember one food, so I think we have been eating the same rice for a while. But Linda is still trying to be as chipper as she can, only our entertainment unit (Which was watching anime or DVD’s on our computer has now gone Kerplunk!”) is down and after that is paid for, I think I will see a lot more rice for a while. I write about this because if you have a long term disability, a severe one, money is an issue. And while Triumph might authorize things like $5000 for a wheelchair, or the Lion’s Club raises money for a racing chair, they don’t raise the money for the race entry fee, or the food to eat, or the drinks you need, or the medicine. And maybe that is why so many couples split up. I hope Linda gets better, and gets treatment, she seems to be getting it. In fact, my crap treatment and subsequent investigation into the neurologist resulted in my father getting royal treatment and immediate MRI’s from the same Neurologist the week after my complaint (odd that!). So, I hope I am by raising a ruckus providing better health care for many people!
Right now I am a wee pissed and frustrated. And yes, pissed not just at the actions of Linda’s employers of simply decreeing “You are NOT disabled, and if you act that way or expect us to follow this Doctor’s instruction, you will be disciplined and lose pay!” And yes, I expect that will play well in a human right court in a few years time, but doesn’t do much for the gas/petrol to get me to the EEG. This is about my parents. I have worried over my parents for years, decades because they had a knack for buying shares of companies about to go bankrupt, and had mortgages which were refinanced. I expected to pay of the rest of my student loans and then pay off my parents condo. However, an inheritance allowed them to move from the condo into a new $500,000 condo (split level; wheelchair inaccessible). And I was happy because I didn’t have to worry anymore. But then, due to various issue they have, I literally have had less contact with them in this last year than I have when I was in Wales (and less visits). And their view is that I got sick on my own, I will have to get better on my own. After all, they took care of their mother, they did ‘their bit.’ Well, I agree they did their bit. Of course, the selling of the mother’s contents to an auction house within 30 minutes of her death was a bit…um…different than I would have done things but okay. My parents took I believe 11 vacations last year. They have just gotten back from 11 days in Arizona, and are going on a Cruise to Hawaii later this year they say, but before that they will be going on another weeks’ vacation, and before Arizona was a week somewhere else that is beyond my memory.
Linda’s mother, who is the wife of a small beef rancher who I believe has had to declare bankruptcy, or the like, after a lifetime of farming (could be wrong), he is in his late 60’s and may still be working in livestock auctions where he has had MANY broken bones (he brings in the bulls, etc to the auction), she has offered to fly out and help take care of me. This is the same woman who would not actually look for more than a second if she could help it the last time we met (some years ago) and still won’t tell people who her daughter is with. Linda’s mother was just in the hospital with heart problems and after two weeks off after a procedure/operation has returned to the care giving work (she is approaching 60 or just past) which keeps her family afloat. She has offered to fly out, putting her family in debt, to take care of me, who she is socially still ashamed of. Like me or hate me, I am family.
My family, half a mile away WILL be floating off on their $3000 round trip cruise. I hope my father who gave me “half” of his funds will use that $10 I gave him back wisely. It is difficult in times like this, not to make comparisons. Particularly as my parents did not keep thanksgiving with us this year, though they did last year ($5.99 special at a Diner). There is no Xmas or Hanukah for Linda and I from them (though there IS for my brother?) and for my parents, though they KNEW there was a great possibility that this was my last birthday, had SOLD my birthday. See, those pictures of me in the graveyard with Cheryl and Maggie and Linda in the video on an earlier post was my birthday because my parents had sold that day, it didn’t exist to them.
When we went to Japan, they gave me a small gift of money to spend in Japan. Well, for them, that meant, they had given money with no obligation, which is well, impossible. So inside they simply wrote, “This is in Lieu of your Birthday” – which I thought was a joke. But no, to them, I have no birthday, not that they gave me anything for the first 30+ years anyway (I am trying to remember the logic which I think was that since Herod’s daughter got the head of John for a birthday present they were evil).
I could forgive them for treating me this way, but not for treating Linda this way. When Linda’s mother will fly out at great cost, but my parents won’t learn how to turn on my oxygen after 18 months just so that it is not safe to be with them, or if somehow I am they wouldn’t have to, you know, CARE for me. I don’t want to be a burden (My father said that often: “Don’t be a burden”). I have never wanted to be a burden on anyone. But I AM a burden on Linda, and I see the effects it has on her. I AM a burden on Cheryl, and it has effects on her too. And Linda’s family is willing to accept a burden of taking care of me. My own parents, or sibling, or relatives, are not. They are Christian so I guess I Tim 5:8 is where they stand (which is kind of insulting to non-Christians but I guess Christians can be at times).
Anyway, that is where things are, and that is why I haven’t been getting as much done, because I spent 5-8 hours a day trying to help Linda with her, um work issues and then a couple hours having health issues (due to the helping and emotional toil) and when I am awake only 12 hours a day, well that sort of does it. I know that Linda wants to give you a blog to update people on the medical stuff, which I am not really privy too.
I simply can not lie by, though I may have to, while people hurt Linda or while books can be sorted and priced, so I am willing to bear the costs I can, which are physical (Seizures, blood, blah, blah, blah). It sucks, but then, it probably reflects how a lot of people have life and decisions that suck when it comes to long term care. Which makes this post and topic a disability issue.
The good news is that with our giant clunky oxygen concentrator on so much we don’t need to pay for the clothes to dry, we just hang them around the concentrator (I’m serious, it saves us like $5 a week!). We don’t have to pay for heat either, but Linda tells me that is free so our clunky steam-punk concentrator isn’t helping us there, darn. Hang on for another day or TWO (computer not coming back today, is sick bad). I hope that my computer will return to me soon and I will be back to at least that stability in life.
19 minutes ago