Saturday, November 15, 2008

Elizabeth's "Booms", Linda's discrimination and the unmentionable

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.


Lene Andersen said...

I hate your doctor. I hate Linda's boss. There is no comfort in knowing that whatever they're dishing will turn back on them threefold. I want the rest of your life and your death to be peaceful (well, aside from the stress of dying). I wish I had more money. I wish I could help.

p.s. glad to see the post. Was afraid for you when you didn't post. Hope your speech comes back.

yanub said...


What the hell is with Linda's workplace? And how do they get away with violating Canadian law so flagrantly?

Now, stop worrying about food. I didn't know that lack of grocery money was why you weren't eating. I'm glad I sent you something, though I guess you won't get it until Cheryl can take it to you. I may not be able to pick out good postcards or find decent socks, but I am not about to let friends go hungry. Not while Amazon has groceries. And I reckon I'm not alone on this. Now, tell me what you like to eat. And email me your direct address so you can get something in your cupboard ASAP.

thea said...

I really feel for you struggling with the money stuff and trying to remember what you're spending with an Elizabeth-style memory. Yes, money is tough. I find it so, and I don't have so many of the expenses that you describe, just more usual mundane ones and even that is hard to juggle.

And I have concern for Linda's health issues too. Aaaargh!

Hang out for Seattle; I am sure that the people who have given money have *given* it freely because they see and feel your need. I'm disappointed for you that it's taking so long to get the paperwork that you need.

Regarding your caregivers: clearly these people have no manners about telling you 'you look so bad, you look so pale'. One of the things I learned in training is find something genuine that you can compliment - even if it's something just in the room... rather than make rude personal comments. But I forgot, your staff don't do useful training, they just came from the zoo.

Raccoon said...

Linda: Yay!

Linda's mom: Yay!

You: Yay! (That one's a given)

Linda's bosses: Boo! (Are they ASKING for a lawsuit?)

Your family (us): Yay! (Because we like you)

Your biological relatives (who are SO not your family): Why? I mean, Boo!

Healthcare costs: yeah, they really suck. Been there, done that/am doing that. Couldn't afford the T-shirt.

The pictures you post: Fantastic!

Thank you for letting us know what was going on.

Neil said...

I know everything's not rosy in your house, and I know you keep cracking jokes to avoid talking about negative stuff; so thank you for not avoiding the bad news.

On the other hand, I have to admit that it's very vexing to have to sit here and read about all the crap you go through, then find out that LINDA's starting down the same road to purgatory.

And I cannot, in good faith, try to tempt you any more to move to Saskatchewan, since the neurologists here are just like yours, only with slighter lower mortgages on their houses; and since the attitude to gays and lesbians is no better here than there (and the gay club here is not wheelchair accessible). Worse, you'd be less likely to get a reasonable price for your books, because: A. there are fewer people here, therefore fewer people who would appreciate your books; B. people here are too cheap to pay what art and culture are really worth.

I am very vexed on your behalf and on Linda's and on my own. it hurts so much to see you and Linda stressed out the way you both must be. ARGH!!

I'm sending as much positive energy as I can, and I'm sorry that's all I can send (except I did send a small cheque for what I could afford, since Paypal wasn't playing nice the day I tried to help - I hope you got it, and the cards I sent!).

Huge hugs - very gentle as needed = for both of you, with much love and positive energy for Linda as much as you,

Tammy said...

I'm so sorry Linda is going through so much shit right now. I just can't fathom the amount of unfairness that is placed on the both of you. It makes me feel so angry and I want to throw a screaming tantrum like my daughter and beat my fists while chanting "UNFAIR UNFAIR UNFAIR!"

Financial matters have been on my mind a lot right now, so you are just bringing the unmentionable in to the light. We will be okay through the crisis, we always are, but the worries are still there. Our worries pale in comparison. I wish I knew of some brilliant plan to help you out.
The picture of you is just lovely. You look tired, but beautiful. The anime pictures are perfect. You must go through hundreds to find just the right one to post that expresses the mood of the moment. They are gorgeous.

I hope so much for both you and Linda will change/improve.
Sending hugs from miles away.

Anna said...

well, sometimes we get nice families, sometimes we don't.
If Lindas mum offers her help, take it. Don't worry about money. I am sure Linda and Cheryl nows a way.

take as best care as you can. I am sorry you body is fucked up.

JaneB said...

Thanks for letting us know what's going on, and hope at least the COMPUTER has found a doctor to help it... hugs to you, and Linda, and Cheryl, from your non-biological family here (that sounds like washing powder).

thea said...

Yes you are looking lovely, even if tired and wrung out from all of the unpleasantness. And good to 'see' you.

Feel free to post in French or Spanish if that is the language you have at the time :P

Blessings on Linda's mother, who is offering something that is undoubtedly difficult for her. That is a great kind of offer and a great kind of courage, to offer to leave her work and presumably what is her security too. Whether or not it can happen I am glad you've had the offer.

And as for your biological family... well... not so good [Thinks Old Testament thoughts about them and then remembers to stop because that's just Not Kind].

Veralidaine said...

Raccoon is right, Beth: Your family now is the people you've chosen and who have chosen you, not the people who happen to share some genes with you. And the family you have now-- Linda, Cheryl, Linda's family, and all of us-- loves you and wants you to be happy.

Also, if you two are having trouble affording groceries, as Yanub said-- just let me know what you need and I will send it. I have some yummy pumpkin bread and recall that you mentioned enjoying that. What else should I put in the box? I can send my cousin a care package. That is no hardship, and I understand what struggling to buy food is like.

For the first year after I moved out of my parents' house I made $7.50 US an hour and had me, a new puppy, three rats, a hedgehog, and a horse to feed. So I of course came last. Oh, and when I did buy groceries, my roommate invariably ate them all and did not replace them. So for quite some time the closest thing to a real meal I had was two of the cheap flour tortillas that you get a package of 20 for $1 on sale, with cheap lunchmeat and velveta cheese layered between, and microwaved for a few seconds. Close your eyes and imagine really hard and it almost seems like an actual quesadilla. And Ramen, I ate a LOT of ramen, bought in the big packages of 40 at Costco so each one cost about 20 cents. It was exciting when I had enough to buy tuna or a bag of salad.

Now that I am doing well enough financially to meet my basic needs and put a little bit aside, I am happy to help feed you and the wonderful Linda who cares for my cousin even as she faces horrific discrimination and health problems.

Also, have the two of you considered applying for a Modest Needs grant?

It's a charity that uses small donations from individuals to fund grants to meet a modest need of an individual or family. My mother is the type who wants little and buys what little she wants for herself, so for Christmas this year she has asked for donations to Modest Needs from her family. So that's how I found them, and I think maybe a grant from them could fund a new computer, maybe an oxygen concentrator, some medicine, one of the things you need.

Should this be something for me to send to Linda so she with her longer memory can investigate? If so, what's the best place to get ahold of her?

Abi said...

Grrr. It seems that there is a lot of unkindness being directed at the two of you. I mean, whether or not it is illegal, it just isn't kind.

I like all of today's pictures, by the way.

And, just so you know (Linda, feel free to print this for future reference), if I were to make a donation to your Seattle fund and you were to die before you made it there, I would be more than happy to consider any money to be a donation towards paying off the debt from some other aspect of your medical expenses; I would not want it back. It's all the same in the end, however it is spent.

Elizabeth McClung said...

I am sorry I haven't been replying regularly lately, with Linda's health and work issues, and mine, I am trying as hard as I can and will continue to do so - I'm not making excuses, it just is what is.

Also, I could have not talked about it for longer, but it reached the point where it seemed to be sort of the situations I had read from other people, how stability so quickly spirals into instability on a financial but then emotional level as well.

Lene: well, I am sort of with you on the doctor and with you even more on the bosses. I hope that with an election looming, being seen as Anti-gay and anti-disability will keep the government in check so we can get quick and useful resolution which means Linda gets the support that she has paid into, that her work has promised her (well, until the last year).

Ironically after a LOT of seizures for some time (more than 30 minutes up to an hour?), I ended up with some sort of 'happy seizure' and much of my english had improved. However we have established that my ability to understand non-literal things is diminished greatly. I will try to blog about that and some conversations which helped Cheryl and Linda go, "You don't understand, I understand that she meant that but you don't! You can only understand the literal."

It took seven hours...but I posted!

Yanub: I think there is a corporate culture in that section which has poisoned some management which feels they can do anything without reprisal (much like VIHA and Beacon?).

You pick out great postcards, we use them every week, didn't you read in the Postcard Project, if it wasn't for you others, I couldn't give the postcards people want or need becuase I don't "get" that and you do. Socks would be good, after two years, it turns out they wear out.

Amazon has groceries? Well, Cheryl has back problems so I can't be seeing her haul like a cart of beans or cantalope or anything. Seriously, Amazon has groceries? There is a grocery store near us that was cheaper - it was closed and turned...into condos. We go to Thrifty foods, which has some sort of on-line program. I will talk to Linda and get back to you. I don't know what food we need (as she eats too) but I need lunch, some sort of dinner which is square shaped so that I can get it with my built up utensils (peas are the devils food as they escape me endlessly!), grapes to avoid parkinson's bowel impaction, bananas to stop potassium deficiency muscle seizures (these are actually sort of daily occurances), poweraide or gatorade for the morning, coke or dr. Pepper as my heart requires assistance with caffine and I tend to dehydrate (it is in the Mayo recommendations, I only wish I made this up). I can't eat bread and certain other things that can't be swallowed as I tend to suction as I swallow to compensate for loss of swallow muscle and not aspirate.

However, after all that, I did not mean the post to come across as some form of begging letter, and I hope that people don't see it that way. I felt this is something that many people, people I care about have gone through or are going through and with a dependant, I know that puts an extra strain on her, the disability, another strain, and I could only give my view as the dependant who is limited in function and ability and used to be the 'I'll just take another job' - we did make $50+ on selling some of my brand new business clothes.

I think I was trying to explain how easy it is to slip from a "stable - everything is fine" state of disability/degeneration, to not being able to aviod what is going on, though helpless and the effect. And yes, it IS having an effect, would I have such strong feelings about my parents who have worked hard (well, one of them) now enjoying life if we were not so close and yet so far from them? No. And would I have such gratitude at the offer from Linda's mother, a trained caregiver to give up time to help feed me, to change me, to shower me. No, I am grateful that her sense of love to Linda and family outweighs predjudice, I guess there are a lot of good people out there. (they just don't happen to be Linda's boss at present!).

Thea: Thanks for saying you get it - it is hard for people to imagine the horror I get when I have this strong emotion, "Need to buy this gift" and I do, and I am sick and have seizures and in bed for two days and I have no memory and then I get up and remember vaguely, "Oh yes, need to buy this gift online" and I do - and then Linda goes, "Why did you buy two of them." And my voice goes up an octave as I go, "I bought TWO! Two!" becuase I realize it has happened again. I try to keep records but for example right now we are currently missing not 1 but 6 "record sheets" that I used and placed in a safe place, along with three gifts that I have "kept safe" so much that I can't find them to give them!

Linda's locum is treating Linda agressively, her regular doctor less so. It makes things difficult. I too am worried, because I see the effects and now know what Linda felt, seeing the effects and not knowing what I can do, feeling helpless.

We have the reports, we are going to start pushing and pushing for that one signiture, and if they don't do it, appeal, because we need to get down there before everyone does the, "What's the rush, it's the holiday season...." - oh, does my disease take a holiday, I'm glad someone told me! That's almost a joke.

I have actually taken it to heart myself, their comments; I am trying to say five positive things for any criticm and that includes when I am scared or Linda communicates in a way that leaves me hurt - try to think of the good. I know that I have a form of dementia and I know that people with that end up scared all the time, simply becuase they can't remember anymore, they have the triggers, but no memory - I want to build a safe space for both of us so that doesn't happen.


Linda: Super yea! But I wish I could be there for her more.

Linda's mom: a surprise yea!

Me: Booish (I am sure that there is more I could have done, looked ahead, I don't know, I just hate being helpless, and saying that I couldn't have helped more is just adding to that - would I rather be bad and selfish than helpless and dependant? Tough call.

Linda's Bosses: Apparently seem unaware that there is internal invetigations, then there are government investigators, then there is the provincial human rights court, then there is the federal human rights court. However, does Linda want to spend years while her bosses keep going merrily along - no, a reasonable settlement which includes a cactus up the anus is probably all I would ask for - Linda being a saint and so nice would not ask for the cactus.

My family, the people I may never see, but who I care about so much: Yay! Double Yay!

Heathcare costs: People think military spending is bad, they should try buying stuff like a 'medical fork' - why is it 20 times the cost of a normal fork - it is 'medical' - add that to a wheelchair which costs more than an SUV and can only go for 4-5 hours on battery - and my head sort of goes..............boom

Pictures: thanks, I work really hard to get books inexpensively so I don't have to um, steal, art off the web but merely have artistic use of property I own on a personal blog (like playing a CD with friends over isn't copyright breaking) and since I have no ads, this is still a PERSONAL blog.

Telling stuff: did you really want all this dumped on you? I feel bad becuase I wanted to tell you great stuff but this is what takes up our time. If you are glad to know, I am glad I posted. I just feel bad like north american protestant values to say, "Hey, we gots no money, we gots problems" is like, "not cool!"

Me sleep now!

Yes, sometimes we get families which go away in a crisis and sometimes we are blessed to have people who never see us, don't talk to us, or ever, and yet, they care, and I care back. I WANT good things for my new family because they are people I care about.

yanub said...

Does Amazon do groceries? Yes! They even have these nice packaged prepared Indian meals that just have to be dumped onto a plate and microwaved, and can easily be eaten with a spoon. If that interests you, I'll put in an order for you. Assuming you send me your real address so Amazon can skip the Cheryl ferry. Go look at the groceries and make a wish list for the sorts of things you two can eat. There's a lot of gourmet this and that, but there is also regular stuff, like macaroni and cheese. I assume Amazon will tell me if something is not available for shipment in Canada. Also, I will see if there is a grocery service in Victoria. That would be even easier, if one exists.

Shea said...

I am so sorry. I wish that you had angel food ministries like we do here. It has been a great help to us, and we are buying two boxes this month. I wish that there was someway for you to get out the crap that Canada has put you in. I'm sorry to down Canada, but it seems to kind of suck there. At least the system sucks. ~Hugs~

Drake said...

Hey you...

I am so sorry you are going through such a rough patch ... umm...that sounds strange to say seeing as your life at this point seems to be a rough patch ... I can understand the fear and desperation you must feel. Having things happen inside your body which you have no control over, is really demorralising, not to mention frustrating.

Not to pry...but what disability does Linda have? Have I missed something somewhere along the lines...

You don't look all that bad... But I would love to see you feeling and looking better soon. I don't know what it is, but I have to stop these thoughts... Either you read my mind as I was wondering what you look like now ... or I am psychic ... or it was a logic thing ...

As always, warmest hugs to you and Linda. You are both in my thoughts.

rachelcreative said...

I understand how the guilt of feeling like a burden can be so much more compounded by financial squeezing. I suppose when money is tight you almost see a quantifable measure of how much "burden" you are by how much financially care/health costs and how relative that is to income.

Money and hardship and the strain it puts on partners and relationships (and family) is a real problem for many ill and disabled people.

I'm glad someone suggested the modestneeds grants. Seems such a sensible and civilised way to do things. A way for those who are able to help out to reach those who need a bit of help.

It can be tough finding yourself suddenly being the one needing the help after being used to going out there and making the difference yourself. But you know the ones asking for help are not worth any less than those who can help. In fact I respect you for having the strength to say things are so tough.

Your parents attitude sucks. I should not be surprised with what you have said before. Pity they are not the type to throw money at a problem eh?

I get mega anxious when my money is tight especially when I can't figure out how I'm going to make things add up. I worked very hard to get myself out of debt and I am scared of going back there. It must be a massive challenge for both you and Linda when you're neurological problems mean you can slip into "no money" anxiety even when yesterday you did have money and spent it!

Our washing machine finally gave up this week and Mr Creative has just this month started a full time office based job to improve secure income. So we have some cash flow problems. I'm using some savings to solve the washer problem - my contribution to helping out. But I am painfully aware that my funds to help are finite and I can't just go out and earn some cash and actively solve problems. Empowered in one moment by contributing and then wobbly bottom lip the next at having less stashed away if case of terrible emergency.

I'm afraid I don't have much in the way of practical solutions.

But I'm grateful to you for being honest and for talking about issues which you are not alone in facing, things that effect many hundreds of thousands of sick and disabled in our societies.

Stephanie said...

Money issues suck. Health care issues suck. I wish I could do something. Good luck.

thea said...

Yes, it's okay to tell stuff like this. As long as it's okay between you and Linda to talk about it.

Friends are for supporting you with all kinds of difficulty, including doing it tough with money and things like that.

North American Protestant values and stuff are not helpful when it comes to this kind of situation. They get in the way a lot.

But we will listen, and try to do what we can in support. That does not get in the way.

SharonMV said...

Dear Beth,

i'm so sorry that Linda is beign treated so badly by her employers. I know you wish you could do more to help her, protect her & take care of her. i understand being in that position. For many years I've been unable to earn any money (I don't get any social security or disability income either). And my many medications cost a lot even with insurance. Now since Dennis started his new job, our new insurances pays very little towards some of my medications (I'm on about 20 different prescriptions). But luckily my doctor was able to help me with some samples for the time being. And I don't know how much we'll have to pay for our part of my IVIG treatment (retail this costs several thousands per infusion). In fact, I don't even know when I'll be getting my next infusion (it was due last Friday) as I'm still working on getting that started with our new insurance company. So, I've become much more costly in the last couple of years, but can do less to help Dennis with his cares, tasks & worries. We have been receiving a little help from my sisters, but the difficult financial times may change that. So my "mad money" is a very paltry, but much appreciated sum. Worrying about money can become overwhelming, so I try to avoid it if I can.

So I understand some of what you feel - wish we could have cheaper chronic illnesses! And your worry about Linda (&Cheryl) and the frustration of not being able to do more for them. But you're not a burden. I know it's hard not to feel that you are. Far more burdensome would be life without you. That would be a tremendous burden for me, every day & for the rest of my life. And I am just a friend you met on the internet. So having you here, still with us - I will not call that a burden.

PS: Take your pills!!


Lisa Moon said...

Hi, Beth,
Gosh, I don't even know how to start describing my outrage over Linda's bosses and your parents... *mumbles cuss-words semi-coherently*
Wish, as usual, I could think of something, anything, that might help.
I just want you to know I'm here for you, even if you don't hear from me as much; I'm getting ready to move to a home with NO STAIRS (yay!) and trying to NOT stress out since, um, I'm not really able to DO much of anything myself...
So when I'm able to, I'm reading and thinking of you, for what it's worth.
And my own father hasn't seen me or talked to me in oh, like, 24+ years now, never met or even knows of my (now almost 17 year old) son, etc. My mom, while in town, is... erm, not quite normal, let's say, and is incapable of understaning my need (even when I was first injured) for help. Sigh. It's painful, but it's all I've ever had.
Although you have poore excuses for parents, please try to remember that you have gathered a community of friends who care for you and Linda and Cheryl very much!

Gentle hugs, and cacti in owwie places to those bad people!