Wednesday, May 26, 2010

This is not a holding pattern: this is life

This is not a holding pattern. I am not sure what day it is, but I will be posting part II as soon as the various disasters resolve (think how many tropical storms sometimes hit the same area over and over again in a matter of hours). I think I have been fevered for days. I haven’t eaten for similar. Also, with the end of extended health care Linda has been superbusy getting all that can be got since we don’t know what pain medications will be covered, much less heart, stroke or other medications. We found out the Sling for moving from bed to wheelchair, or floor to bed has been denied. Reasons behind this, when clients from MS to ALS use slings is beyond me (and it seems blue cross – the form was submitted some months ago by my hospital seating specialist and phsyiotherapist, not us). Also several things that were to be fixed on my wheelchair some months ago, weren’t. So I have a bed.

The crew across the road is behind schedule so now they work 12 hours straight and with more people (though oddly just one person on Friday), and they will finish framing and stuff in two animals, so they say to Linda. How I will survive, since I have major autonomic failure after 8 hours without sleep will be…interesting. It is raining heavily right now and they are putting up walls for the $750,000-$1,200,000 split level condos with vigor – no steel or concrete – now that just seems poor value, but I guess it is ‘load bearing’ wood. With the end of any coverage, all extra money has been spent on medication and other medical items putting me in the ‘Anchor dragging Linda’s Life down’ mood daily. So between that and asking her to help kill me, it is pretty festive. Thank you BC government for causing a 5-10% unemployment increase in this one town, but go Olympics!

I guess any anger I have is to cover the crying. I still am not on disability of any kind due to this provinces strange regulations, and due to the VIHA’s manager of Victoria saying a couple months ago that SHE is definitely discriminating against me due to my disability (that was after she made Linda cry). So, no assistance from our ‘manager’, or sight of them for the last many months (maybe they got laid off too). Also, we were informed that Monday (holiday) we would get no care instead of the mid-day and evening care just because. I write now as there is construction inside our apartment to put in the one new air conditioner we could afford for this year (since all tend to be on 24/7), which Linda borrowed money from me to get, which is fair only now no money for that, or indeed for going out for ‘birthday’ meal. Damn, nothing like being disabled, helpless and have to think about money and how much I cost people every (bleeping) day. So I hung myself. This has produced some interesting bruising but was not entirely successful.

The irony being that I spent what money I had this month getting gifts, for my non-parents (they don’t acknowledge really being my parents since they deal with disability this year by a) going on a LOT of vacations out of town, b) buying a new van and c) deciding they are ‘dead to me’ – so pretty much like other years) because just because they don’t love me doesn’t mean I can’t love them, so Birthday and Mother Day presents. Then, this weekend, it was sending out 14 packages of gifts, which is higher than some weeks, as well as gifts to all those kind people I have never met who show love is action, and gifts to those who send me/Linda/Cheryl postcards and gifts to those who just have similar interests to me. Also giving away some precious things preparing for my death, so Linda doesn’t have to do that.

Health: Linda and I did a list of every body system and found that every single one, including skin (the largest organ!) was compromised significantly. At the end I asked, “Are you SURE I’m not a zombie?” This week, which was to be a rest week has appointments every day, indeed, we are so busy doing things to ensure the survival of ‘ill Elizabeth’ that I, the actually Elizabeth have no reserves, or ability to rest, even with a fever because there is no day, no way to rest.

Linda is still unemployed, she is still applying. We are both now uninsured. I know others have been and are in this position – terrifying ain’t it? A NEW infection has arisen in the local hospital. The pain last night was severe, severe, severe, like unable to move, just able to have tears run down into my ears, and wondering what that noise is and finding it is me moaning painful. That’s a fun way to spend the middle of a sleep period.


JaneB said...

Oh (((((Elizabeth))))), (((Linda))) too.

Wish I had something concretely useful to say! Guess all I can do is hope it snows on the workmen - that would reduce the costs of running the air conditioning AND might let you SLEEP!

SharonMV said...

Oh, dearest Beth,
I wish I could give you a day, an hour without worry, without pain, without tears! We are so lucky even with Dennis being unemployed, that we still have our insurance. of course what they don't cover is still more than we can afford to pay. I understand the feeling of being a financial drain & burden. Especially since my IVIG costs $5000 every 3 weeks & we must pay 10%. Not to mention co-pays on meds which are several hundred a month. I get to the point where I go for days before re-filling some meds. Yes, so lucky here in this rich country where being able to live while chronically ill should not be such a struggle. But we are fortunate compared to so many others.

It's hard to remember that your life, that your being here now and for as long as possible, is so very important! You are so precious to me, to Linda, to so many others - beyond price. I see it in Dennis' eyes sometimes, what I mean to him, know briefly and utterly in that moment that I am everything to him.

Even now, when it seems I have no life but sickness, pain & these walls around me, I fight and hope and dream. I work on art when too sick to do anything else, art that has no meaning to anyone but me - no future as far as I know. That is something that you gave to me, a dream that you helped me get back. When Dennis & I go to the ocean, visit the forests, that will be because of you.
Don't forget how valuable you are! Your intrinsic value as a human being which cannot be negated. And the immeasurable value that your particular and most special soul has in this world.


Lene Andersen said...

Aw, crap. I'm so sorry to hear of the relentless storm of... well, crap that's descending on you. But please don't hang yourself again. You being here is important to Linda, Cheryl, me and a whole lot of other people.

Waitaminute... the manager ADMITTED to discriminating against you??? Just blithely sat there and admitted it? Good lord...

Lots of hugs to you and Linda.

Anonymous said...

Wow! I can't believe what you have to go through. And to not be on disability?!? Why don't you go to your local TV station or newspaper and see if you can't spur some action that way? Always seems to work for others ...

cheryl g said...

I wish I could do more to help. I am very thankful the hanging didn't succeed.

FridaWrites said...

Oh, dear, I'm so sorry. I am sorry I haven't been there for you the past few days. I love you and I wish you didn't have this pain, emotionally or physically.

Elizabeth McClung said...

Jane, at this point, I think they would work in snow. I wake every few hours anyway, too many emergencies, flight or fight crap.

SharonMV: "Especially since my IVIG costs $5000 every 3 weeks & we must pay 10%. Not to mention co-pays on meds which are several hundred a month. I get to the point where I go for days before re-filling some meds. Yes, so lucky here in this rich country where being able to live while chronically ill should not be such a struggle."

A country where you can walk in and get a GP is a rich country. I've worked many years often at two jobs in the US, never even took unemployment, social assistance or disability. Not in the US, Canada, or the UK. And I worked since legal age for underwage, at two jobs. I don't think we could get co-payment for one IVIG treatment, certainly not refill medications multiple times a week. Not now or for some time to come since right now we don't have any for food for a while. In Canada, no pay up front, no meds, particuarly not in the hospital. Besides, we put all our extra money into the air conditioner, which isn't working.

I guess 'Breaking Point' must mean something else to me than others. I printed a letter to Linda under that.

I am glad you value your life so highly. I value mine at a $10 belt and a good hook, or maybe a knotted sheet, I can do the knots with my teeth.

Lene: Don't worry, I wrote a summary, sent it to everyone from the Globe and Mail to the local paper, and also called the manager in charge of making sure that the government has a good answer for all the shit it does and told them the Globe and Mail and other papers had the story. It did produce a result - we haven't seen a manager or had any VIHA direct care since! Discrimination is only discrimination if someone is willing to stop it, otherwise it is just 'behaviour'.


Frida: Ditto.

Baba Yaga said...

Oh my dear. Oh my dears.

All that work to keep living, all those resuscitations, and you get desperate enough in the right (wrong) way to hang yourself. It actually does make entire sense to me. And I'm sorry.

wendryn said...

I second the hugs for both you and Linda. I'm sorry everything is so hard right now. Sounds like a lot of storms have blown in. I don't understand why more things aren't covered, but I generally don't understand the "logic" of the health care industry.

I hope some of the stressors stop. I hope Linda finds a job and you end up getting the meds and help you need.