Wednesday, March 04, 2009

All I can do; so Linda can sleep.

My little world has cracked open, sadly. Linda can not sleep. I work until I drop. I have searched over again for a job (only opening ironically in the military for fighting forces – they already turned me down). Why the job? Because we had a co-line of credit and suddenly that person decided that my disease is a lifestyle ‘choice’ (like a game, but with death as the prize!) This coming from the person one would normally turn to, believe in; the one family member who was still speaking to me in town.

Linda has a good job as a government manager and is working hard to go back to it, months ahead of the schedule of her doctors and the government doctor. She wants, like me, to be part of something, and believes that will, if not help her disability, at least give her accomplishment. Plus her income will increase being off of medical.

The two years of medical expenses which are normally absorbed over a decade or two have stressed us, sucked out our savings, and yet, we try to go on. For example, the postcard project is now covered mostly by donations of individuals, I just need to do the work and Linda and I chip in financially our part too. And I think most know that I work as hard as I can, from waking until sleeping every day. The last days I have pushed myself further, sleeping five hours a night. It is not enough.
The problem is that with Linda’s reduced income on disability, we have depended on budget including a fund for non-covered medication, and the bulking up of medications before we ended up without a GP (ouch). This also includes off the counter pain muscle relaxants, gatorade and other weekly expenses. We knew that costs, particularly in January without insurance coverage, would go above that of our budget, and there would be a dip into the line of credit.We just needed to hold on. These costs, as the months went on, would be paid off as things even out.

Instead, just as we come out of the worst of the costs, that credit of thousands was taken away, and we are left without a safety net. We will try to find one, and another line of credit as with Booth-Gardner they seem to talk about multiple visits. So between my LIFE or a little debt this year (which if I die I pay off with my life insurance on death or if I LIVE, I get a job, or sell a book) I will fight for LIFE. To me, the person's act, while knowing that both of us are currently disabled, is without honor. That’s the nicest way I can say it.

You know that Linda is more than my life to me. And that to see her in pain, in any pain, is unbearable. I cannot fix this in a day or two, I am too ill. I could become angry or wish violence,instead I could do something hard. I debase myself. I will do anything for Linda. So, please, for Linda, if you can give to her/my medical fund (you click the paypal button - down a bit on the right) please help me to help her. If you want stipulation, you can put any stipulation on me you want, and I will attempt to fulfill it. Want me to post a picture wearing Miko on my head: donate and help Linda. All I care about is Linda and helping her sleep. If you want part of my skin, I will send it. I just want Linda to have a security cushion while we deal with this. Please. I said to myself that I would never do this: never ask directly. But for Linda I will do anything. Wouldn’t you for the one you love or your child? Later I will go out begging with a new sign. I am sorry and embarrassed you have to be part of this, and see this. But this IS what life is like sometimes.

26 comments:

Raccoon said...

I do not want a piece of your skin. I do not need a picture of your cat on your head. (Sounds like a weird retelling of Green Eggs and Ham, doesn't it?)

I just want for the both of you to stick around for as long as possible.

I'll see what I can do.

yanub said...

No begging with signs! You will worry Linda more if she thinks you are going to do that. And then how will she sleep? OK, so promise?

The person who cut you off is thinking out of fear. Perhaps, after a bit, they will come around to remembering that the only important things in life are people. But if they don't, it will all still be OK. None of us are white knights able to charge in on powerful steeds, but enough of us are mice that we might be able, all together, to pull a pumpkin.

rachelcreative said...

I'm glad you asked us before you asked strangers using a sign.

Please no begging on the street - as much as Linda needs security with money she also needs you safe and not missing fingers from frostbite.

I get so freaking scared when money starts to look tight. It can be overwhelming. I like what yanub said about how we may not be able to dash in on a white stead but there's enough of us mice to pull a pumpkin. That's true.


PS: Radical haircut went a bit unradical. I have no idea how to wear my own hair now. Oh well! At least I don't go out much for people to see it. At last being housebound pays off.

Kate J said...

I cannot BELIEVE, that anyone could possibly, EVER, describe your illness, disability,pain and general situation as a "lifestyle" choice! I mean, why? Because you're in a lesbian relationship? You'd be just as ill if you didn't have Linda... i fact I'm sure you wouldn't have survived at all, maybe that's what that person wants, whoever they are.
If it's not the "lesbian lifestyle" they're talking about, I'm at a loss to know what it could possibly be. You're talking about a family member here!?!
Family should support each other, especially in times of need. I'm not too happy with some aspects of the "lifestyle" of a member of my own family, but because he IS family, I'm helping him by co-investing in a house, so he can actually have somewhere decent to live. (If I hadn't done that, I'd be more in a position to help you, but there it is...)

I did send a small donation last week - it should hopefully reach you soon (via paypal) if it hasn't already. Sorry it couldn't be more at this stage...
Love & peace

Elizabeth McClung said...

After writing this and responding to previous comments I had a seizure and was taken to bed, I woke up almost four hours later. I tried to get up, got to the computer and passed out again. So I think that tomorrow will not be as good a day for outdoor begging as planned, as I will have a 'bed day' I did, with Linda's help put up my bicycle which rode across BC (and was to ride across the US) and parts of Wales and California for sale (custom make for tall people - luckily the west coast is full of them), my skis and boots for black diamond and I guess blue diamond slopes, the don't turn until you get to 20-25 mph so that would be a rather cruel gift for a beginner on a green slope. I think it was $40 or the like for everything. But I liked the James Bond style ejections, as they assume when you hit things or stop, you will need to go or will break something so you eject up, forward and four other directions, the faster your go the more you need to tighten the ski or like me you find yourself skiing on one ski as a nasty bump has ejected your other foot (skiing on one ski is possible, is just makes the turns a little harder). Also one of my wheelchairs I put up for sale, and a table. That's me resting with Linda's help!

Raccoon: No skin, I don't have any tattoos, so no real collectables except my birthmark is an M like my last name which I thought was kind of cool.

I appreciate your kindness, more so that I have never, ever wanted to ask for it, or assume it or in any way impose on you. I am sorry, but for Linda I will bear the shame, for Linda I will bear anything. I hope you understand. Thank you.

Yanub: Well, I am doing it online with selling items. Linda helps take the pictures and I do the descriptions and we see how that works. After I wrote this she slept for many hours so I think she believes that all we can do is done; or she believes in the hearts of the people who read here; but she slept, thank goodness!

I think they are acting out of fear and the word 'recession' which everyone uses while buying DVD player and PS3? I like your analogy, and I was going to stop sending postcards but then I realized when I looked that so many individual people have given to the project and we have the postcards, we have the stickers, we have some stamps, and some money for the .94's that the postcards should go on. Which made me glad. It is easy to look at that as a total Don Quixote situation, wasting the estate in order to give it away to a prostitute (Dulcina - his 'fine lady' - in the play, she lives up to that, stopping being a prostitute so who is to say what worth it was). But that I can continue does make me happy, that readers would see it as a total waste of money that I should have used for medical, would have deeply depressed me.

I certainly have made mistakes, and now, that I am moving further into dementia with extreme memory loss, it is hard to know what is and is not the disease. I want to be a mouse pulling a pumpkin - it is a wonderful analogy.

Rachelcreative: I asked, I think because I wanted to be honest to the people who had read. Honesty of the good and the bad.

Linda also worries a great deal about begging on the street, as she says the damage is not worth it, while to me, the damage is only to my body, the pain to my body, while I can give her rest. So it seems a fair exchange. She has um...'words' about that.

Yes, a tight money situation makes everything from running out of TP to any expense look like a threat. Sigh.

I am very sorry the radical punk Rachel or Emo Rachel will not emerge today - but I will hope in a week or two with a retrim there will be joy instead of....saying, "Well at least I don't go out much." - which seems less than joy.

Elizabeth McClung said...

Kate J: I have no idea, I think it is that I do things like send out postcards perhaps or that they can't understand that the gatorade is from the Mayo Clinic recommended protocol, and think I should drink water to cut costs (except my BP would spike to over 200 as it has in the past and did to split my eardrum recently). I think they are of a certain age and haven't been really sick most of thier life or been 'flu' sick and 'soldiered on' - so I guess that is what I am supposed to do or something.

Thank you and I understand completely, as in my understanding, regardless of treatment, "Family comes first" - so please, always family first for you. If there is any decision please put them first. It is just too bad that um, the individual, sort of has joined the family motto: "Family first...in killing them and dividing the spoils" - we weren't raised as pirates, honest!

SharonMV said...

Dear Beth,
i know it is hard - the medical expenses never quit. I worry about Dennis too - he was just working on our taxes today. Several years ago we had a family member helping us with our medical co-pays, but that stopped suddenly. It seems we had to "stop living above our means". People just don't realize that even if you have insurance, the co-pays & other expenses are so much and with chronic illness they never stop & often grow. And with our new insurance, our co-pays for my IVIG are much higher and IVIG which I need every 3 weeks in order to live is very, very expensive. And I know the over the counter things add up too (I have several OTC things I need)& people don't always understand that they are necessary ,like the gatorade.

But please, no begging or offering up bits of yourself. Things will get better for you & for Linda. And fight for yourself, your life, time with Linda - that is what she needs. She needs you. Try to be calm, even though worry about money is hard. And you are right about the postcards- keep doing them.

And get your sleep!! Being more rested, you will function better, and that helps Linda too.

Love to both of you,
Sharon

Anonymous said...

Is there's away to schedule regular donations through paypal, for a little more security? I can't understand those things just now. But does someone know how?

No begging on the street. You'll scare Linda more than money does.

Anonymous said...

OK, I looked it up. If the account is a premier or business account, you can get a subscription button from paypal, which allows recurring payments.

http://tinyurl.com/cckkq8

FridaWrites said...

I will send a small amount now, more if husband's job is secure in a month (let's all hope for that!). Please don't apologize for asking here--we're your friends. I'd feel bad if you didn't feel you could ask.

Abi said...

I shall do a little discreet begging on your behalf on Monday (in other words, quite soon) and forward the proceeds to you.

In return, please will you look after yourself? I want you to commit to doing something relaxing, or just for yourself, every other day (you can do something more often than that; I would like that more). In other words, if you didn't do anything relaxing yesterday, you must do something relaxing today. I know that sending a bit of skin, or having a photo taken with a cat on your head would be much easier in some ways, but last thing I heard you were willing to commit to big challenges! I am a cruel taskmistress.

(Yes, I would rather give money with no strings attached, but I really, really want you to look after yourself and if this will help, then I will demand it. I know that there are a lot of demands on your time, but there are also a lot of people who want you to live for a long time, and in order to do this, you need to look after yourself! OK?)

Preaching over now. Feel free to blow a loud raspberry in my direction. I hope that the situation gets better soon. Sending a gentle virtual hug for you and Linda.

FridaWrites said...

Yes--get sleep. I like anonymous' idea.

Neil said...

Begging with signs would not be a good thing. Asking for help online? Hey, we're your REAL family; ask away without shame, dear. We mice will nibble through the net (NOT your safety net!) that you have fallen prey to.

I'll talk to m Beloved tonight, and send what we can. All we need is to know that it will be appreciated. And we already know that! We know that no bank will put as much value on our meager contribution as you would. And no, I won't bankrupt us. I wouldn't be that silly, and my sweetie wouldn't let me.

Love and hugs,
Neil

Nancy said...

Thanks for letting us know! It had to be really hard to write that, emotionally, but I'm really glad that you told us what's going on, so that we can support you however we can.

I also wanted to let you know that your postcard arrived, and made me really happy on a day when my husband had to be out of town--so thanks very much!

Diane J Standiford said...

Just hello, still wishing you two an easier road.

Linda McClung said...

Yet again I am amazed and humbled by the online family we have. You guys are awesome.

It was difficult to write and had I not been so desparate I would have asked Beth to not write.

I know many of you are going through very difficult times so please don't donate if you can't afford it.

I did sleep really well during my nap yesterday - the night was more restful too. Tonight I expect I will sleep like a log what with peace of mind and a stroll through some nature this afternoon. I expect you'll see pictures soon on one of our blogs.

Lene Andersen said...

I can only imagine how difficult it was for you to write that. Please don't beg on the street - it'll worry Linda (and the rest of us) and, to be annoyingly practical, the payoff isn't big enough to warrant the risk to your health.

I'll send what I can.

Elizabeth McClung said...

I have tried to have a policy of not hiding the nasty stuff but having some nice and fun stuff too. That is why there are no links to other webpages, no money is made by your clicking here - if you want and come and read, please do. I don't want anyone to feel obligation. I broke that yesterday and I'm sorry. PLEASE do not do anything to diminish your life or quality of life; please do not donate if you are working on a fixed income but put it toward an emergency fund instead or enjoyment. We have sold the table, we hope we sell the bike and skis next. I spent several hours communicating with this relative (parental) and right now only the surity and financial security of my death will make them feel happy or secure. That is kind of sad. And exhausting.

Frida: yes, don't worry, I am in this for the long haul (she says as she drops over - morbid humor) - I apologize for making this need known and for being unable physically to do more. I'm off to sleep....er....soon.

Anon: THanks, I will try to talk with Cheryl and see how that works out and if she wants to impliment it on the other blog.

Sharon: Yeah, I think until you are disabled chronically it is hard to explain all the little costs and how they add up. How every medical decisions, even positive ones, have costs, how an OT visit to improve your life is going to leave $475 in costs. How did that improve your life? For Linda I would do anything BUT sell my body for sex, as Linda has nixed that. For Linda, anything. I think for most other people, the same. I try in dozens of ways to improve the quality of life of people around the world. Linda says I can't be there for all of them, but I say, then who will be? I am sorry this is all so public.

Neil: the thing about water is that it can break down stone, over time, with gentleness. Thank you for your gentleness.

Nancy: yes, it was very difficult, I didn't want to make it emotionaless, but too emotional, but it was very hard. To see Linda in pain is me in pain.

I am so glad that the postcard came at a good time and you received enjoyment.

Daine: thanks, me too, how much bad luck can we have?

Linda: Hey, you get to write what you want on your blog, and I think a few gift certificates to Safeway would be cool. Why cannot I write my pain on my blog. I also AM going out with the sign, okay, I did just come back with frostbite but that is just pain, if I can help and contribute, then it is worth it!

wendryn said...

I don't know if I've said this before, but there are two different kinds of family. There's family with a little f - they're the ones you were born with, the ones you didn't get to pick. Then there's Family with a big F - that's the Family you have chosen. We're Family. We may not be related by blood or anything else, but you can ask us when you are in need and we will do what we can.

Please, no begging with signs. We want you to live longer, and frostbite can't be good for you.

I really love the image of mice pulling a pumpkin.

Anonymous said...

Oh my, I'm so sad that both of you are stressing on top of the horrendous medical system and disabilities! I'm also SOOOO glad that you two have each other! And that will keep you both going! My animals keep me going as crazy as that may seem to some! I don't give up when I want to and I don't just lay down and die as the dog needs to be walked and get a treat and the cats want to be fed and everyone wants love and kisses! The only things in my life that have not abandoned me and never will! Anyway I digress! I'm hurting real bad money wise, just hid the car tonight! If I can get my new GP to approve my additional
disability that I have coming to me I will be able to help out! I'm here for emotional support and as I said you are always on my mind! HUGS and LOVE, Bronwyn

SharonMV said...

So glad to hear that Linda is feeling better & I hope she is having a good sleep right now.

Beth, I really think the downturn in the economy has been a big part of your parental unit's decision. And with the worry that they might be providing assistance longer than anticipated (meaning you'll be alive longer). Ha - let's hope so! I hope they are re-considering. When Dennis lost his job of over 20 years a few years ago, parents helped us out. Then came a time when they decided that they'd helped enough. This was right after I'd been diagnosed with Lupus. Dennis got another job within 3 months, but it did not pay as well. But I knew that there was more coming and that this was not a good time for them to cut off their assistance. I asked Dennis to call them up & explain that every penny they had sent us over the last year had gone to pay medical costs. I knew that they would not know this, because it just does not occur to people that even with insurance, illness is very expensive. They did agree to help us out for a while longer, by paying for my prescription co-pays. Anyway, I'm glad that you're talking & even though your folks should already know that they are helping with medical costs (even the gatorade), I hope they will re-consider & continue to help you. I know all your Family here who are able to will help.

Sharon

Stephanie said...

I don't have any money to spare out of my meagre budget, but I will be getting a GST rebate next month so I will send you some then.

Last summer when I lost my home to fire, someone I barely knew came forward to help financially so I wouldn't have to live on the street while I desperately tried to find a new place to live. I want to pass that on in any small way I can.

In this case, though, it isn't really charity. As I mentioned before, your writing in this blog has been helpful to me and I am willing to pay for the value I have received from it. I think of it as a blog subscription fee or an advance on your next book.

Here is something else that may bring you a bit more money: If you haven't already, you should apply for the Federal Excise Gasoline Tax Refund Program. It is for people who have a mobility impairment and it refunds the federal tax you pay on gasoline. You can get refunds for gas purchases for up to 2 years ago.

CJF said...

I have an idea:

Beth, would you consider doing a sponsored bed day? In other words, people sponsor you ($1/hour or whatever they can afford) to stay in bed and read and rest and listen to music or fantasize about cat girls. Linda or Cheryl can time you. That way you'd be able to beg and rest at the same time....

FridaWrites said...

Comment got lost, but you are the most giving person I know. You can't apologize for not physically being able to do more to the girl who's always laid out on the couch with the computer! Even reading books often hurts my hands and shoulder too much, though I try--unless Kindle text, but a lot that I need is not available in that format.

You would do the same for others if the situation were reversed. I hope you have a good weekend. Kid 1 has a volleyball game tonight--grandparents will take her. Kid 2 is racing the pinewood derby car that he built tonight (and the husband-kid made one too to race against the other dads); he'll probably advance to the district meet that will be tomorrow as he did the last 2 years. Then seeing family tomorrow afternoon. Then surely outdoors on Sunday for four hours or so--cabin fever! Hoping my back holds up and looking forward to it.

Now that the kids have so many activities I feel like we need one more weekend day each week--one for their activities, one for the chores/cleanup/errands, and one for family time.

Veralidaine said...

Beth,

I have a bank deposit to make today, and after that, I will give what I can to the medical fund, and after that we will talk about your costume for Sakura Con. I will send an email about that, because there is no way I'm,letting you give up joy and anticipation for medical expenses. Linda's sleep is important-- so is you smiling genuinely out of happiness a few more times before the end of your book.

I've taken the liberty of encouraging a few other postcard recipients to give what they can. I hope this does not result in any nasty emails, and that it does result in a few donations.

If you must go begging with a sign, I know better than to try to stop you from doing so as that will make you that much more determined, but please wear very thick gloves and go inside if you start to get frostbite. Linda will get very little sleep if she is worrying that your fingers might fall off.

Shea said...

I sent you a package today and a little something for yourself. Please let me know when it arrives, and thank you before hand, whatever you decide.