Saturday, October 25, 2008

Don't blog angry

I will probably be very sorry I posted this. Because I am a little pissed, and you shouldn’t blog angry. And I would be, if I was going to be here in a year to reflect back on this.
Sorry, I shouldn't be a bitch, please let me know if you would like any of the following (there is likely to be a few months delay until delivery):

Titanium manual wheelchair (17 inches wide)
Some electric wheelchair ($18,000) will be here in a month or two
An indoor wheelchair, E&J, good for getting around the small doorways (width 16 inches)
Hospital bed with electric head and foot raising along with pressure mattress
Um, one old oxygen converter/concentrator (sic)
Hospital Tray
Shitload of postcards
A walker for an extra-tall person as made by Dolmanite
Shower bench with back support and grab bars

If you have seen a picture of something you would like on my blog, let me know. Um, a lot of the stuff like my books and that I am leaving for Linda to auction off to pay for my funeral and help her pay off her credit card from medical bills and Elizabeth bills.

29 comments:

thea said...

Hey, I wish people *would* get thumbs out of asses. If only for hygiene reasons!

I would really like to see you able to get some meaningful treatment including being listened to respectfully. Is Seattle looking like a possibility in near future?

I have a wee sticker package coming your way for use on the postcards - goes off next post, unless you don't want it because of what people are saying about you doing postcards because of 'not having a life'! I think those people are morons and clearly do not have a life. Why don't they just ask for a postcard to enhance their miserable lives, rather than say stupid things to you...

Judith said...

Hi Beth,
I am sorry you are feeling so angry and unhappy today - I don't blame you for either.
I wanted to thank you for the postcard I received this morning - pretty purple haired anime girl and lovely Japanese theme for the message. It'll go in my journal - everything in my life ends up there in some form or another! Thank you for caring enough to send such a lovely card. I've had a virus all week and now I have conjunctivitis too so it was extra good to get post so colourful and thoughtfully made.

Tammy said...

WOW...you are really angry and in a very ugly place. I can feel your exhaustive anger and bitterness in each word.

Dear Beth, I love you. I don't know if I have ever typed that out to a person I have never physically met, but I mean it from my heart. I wish we were sisters...then I could be your family, there for you,helping Linda and Cheryl. If I was your sister I would live closer than the 1,000 miles we are apart, and come give you a hug, a shoulder to cry on, and an arm to slug because it seems like you just need to give someone...anyone a good, sharp, slug.
I am sending you love. I hope you can feel it across the miles. Perhaps tears can carry it to you.

Anonymous said...

I feel sorry for you. I almost pitty you. The only thing that really got me with your post is how you bashed american doctors. We have some of the best doctors. That is why people come from all over the world to see them. If you are going to have such a piss poor additude about them then do us all a favor here and stay there. Maybe they are so busy that they can't "get it right the first time". Let see can it be that non us residents clog our system? God help us if the libs over here try to turn our medical system socialist like Canada.

Abi said...

Well, you have not always done things which are entirely sensible, but you have reached out and made a lot of difference. It's crap that it has been so hard on you, financially and in terms of commitment.

Ah, so much is crap at the moment. I'm so sorry that such crap things are happening to you; I wish I could do something to make it better. Sending hugs your way, along with apologies for not really having a clue what you are going through.

Devi said...

I'm here to listen (read, you know what I mean) whether you're angry or not.

If you don't want to do postcards anymore, that's your decision (much as I appreciate the one I received), since it was your time and work that went into them. Maybe it's a sign from God that I should get off my currently able-bodied ass and send off some postcards of my own for a change. (Not hundreds of them, but some.)

OneSick said...

Elizabeth,

You have every right to be angry.

There are many people at whom you *should* feel angry, with all the justification in the world.

I just wish you weren't angry at yourself.

-OSM

Anna said...

angry mood yes.....
so I suppose saying, have a good day seems a bit off.
Sorry, no need for titanium wheelchairs yet. E-bay?

yanub said...

But tell us how you really feel....

So someone is questioning your priorities? They have a lot of nerve. The most important thing anyone can do is connect with other people, so you spending time and money doing that is a perfectly good choice. And it is an even more important choice when one's other avenues for connection are restricted.

As for your medical decisions, well, I understand. It all seems so clear to people who aren't going through medical hell, or even medical purgatory. But the reality is that, no matter the logic of a matter, we all have emotional reactions and only limited emotional and energy reserves. It's exhausting to see doctors. The medical system doesn't take into account just how exhausting it is. It may seem like just a 15 minute appointment, or a two hour procedure, but to the patient, it is an entire day or more of preparation, hours spent in travel or waiting, time spent trying to understand exactly what it is that the doctor has said or why he is calling for more tests, and why nothing is different now. No new meds, no new treatment, no new insight. Just more tests scheduled, more money paid, more time lost, more invasion of one's body and insults to one's mind.

Yeah, postcards are better. Blogging is better. It's something under your control, Beth, and something that feels useful, and actually is useful. And that right there, that being of use, that being in control, is extending your life and improving it more than anything any doctor has so far done for you.

You'll be at the Seattle clinic soon enough. And it may pay off. Or not. But the postcards and blogging are a sure thing.

Kathz said...

Why shouldn't you blog about your anger? I'm angry about what is happening to you: about your illness, about the way you have been treated at so many levels, about my own failure to do anything for you.

I just want you to know that even when you are most frustrated and angry, you remain loveable and loved.

The postcard for my daughter, who is a Myazaki fan (did you know?) arrived today and I shall forward it to her at university where it will be a delightful surprise for her. Meanwhile I thank you on her behalf.

cheryl g said...

I would argue about how stupid the postcard project is. I can`t believe it is stupid to do something to reach out to people, to try and spread some joy in this world. The postcards I have received mean so much because they tell me someone truly cares about ME.

I don`t want your belongings. I want you in my life for as long as I can get.

What am I feeling right now?

Incredible anger at the apathetic, jackass who pretends to be your GP and with the medical establishment as a whole. I believe that proper pain management would do a lot to improve your quality of life.

Great sorrow that you are in such a dark place and frustration that there seems to be little I can do to help you. You are my family, my sister and I want the power to make everything right for you. I am not leaving. I am not going away.

Lene Andersen said...

Blog any way you want - it's your life, your death and your bloody blog.

And I'll read anything you post.

SharonMV said...

Dear Beth,
Yes, blog angry - I can take it. It is strange how people think death is always so quick and easy. My poor Mother-in-law had to endure 2 weeks of waiting for her husband of nearly 57 years to die. And people have no idea of how sick you can be & still just go about your day (such as it is). It took my family years to get even a clue. The same with understanding how people can function while in pain. Now, I don't say that it's easy, but we keep going.

Lately, I've been have a strange sensation - not strange as in weird, but as in not familiar (at least not in recent times). It's happiness. Sometimes, when I'm sitting in my bed & working on art, I feel a contentment. Everything's within reach - my supplies, a cup of tea. And on some days I actually feel a moment of happiness - I'm there thinking to myself "I'm soo happy". Maybe it's the creative process, the lower pain levels from not moving around much, a good day fever & illness wise, thinking about people I love, but I get those moments. I really wish I could send a few of those moments to you.

Love to you, Linda & Cheryl

Sharon

Drake said...

Do I say something? Do I say anything? I want to tell you that I am bauling my eyes out... That my heart is braking into pieces over what you wrote...yet, I can't blame you.

Call this a "Don't comment angry" comment...

Life...to us...what the heck does it matter? We get shoved to and thro, from one doctor to the next, each having his/her own oppinion on what is "wrong" with us or what is NOT "wrong" with us.

I hate doctors... I hate them for having screwed up my life! I hate them for having left me in the dark for sooo long...for diagnosing me with "Low blood sugar" when I was actually having MAJOR leg pains due to my legiments TEARING out of my knees! I hate them for not having the guts to fix my knees when they still had a chance! I hate them for shoving me out of their office after telling me they don't know how to help me!

To hell with it... They might as well have left me to die at 30 from an undiagnosed heart condition...at least that way, I wouldn't spoil your memory by thaughts of quitting this life.

Most of all...I hate my self. I hate my self for not being as strong as you have been. I hate my self for not deserving this "second" chance. I hate my self for not screaming out "But mommy it hurts!" untill they listened...

I hate my self for not being able to help you...and feeling so useless.

Post this if you want...or keep it for your eyes only.

You don't deserve this. I don't deserve anything.

wendryn said...

Nothing really to say to this one. I understand being angry. I hope something gets better soon.

*HUGS*

thea said...

Is there anything any of us can do to help with how angry you are, and with the other shit? I mean apart from every person's thoughts/prayers/intentions/whatever they call it. You help with how other people are feeling when you interact with them... and when they receive things from you.. so only fair to offer.

I ogled every shot of you in a corset. Must print one off. Would love a pic emailed to me if possible. Will email you about it though.

JaneB said...

Yes, I see something I like on this blog - one EFM. I'd like her to stay around as long as she f-ing can, and keep writing about it all.

Tammy said...

I'm worried about you Beth! Check in soon, please?

Raccoon said...

I'm sorry you had/have such a bad day.

Uhm... I hope you feel better soon?

Stephanie said...

Hello,

I found your Postcard Project through clicking links and I thought it was such a nice idea for someone to do that I came here to see what you were like. After reading a few of your posts -- I am awed. To find the strength to spend time on making postcards for people you don't know while battling death as you do is amazing and hardly believable. That is strength, the kind I someday aspire to. Thank you.

Victor Kellar said...

Was this an edit of an earlier post? I think so. At any rate I just want to say something really stupid:

Be pissed. Its better than feeling nothing at all

Neil said...

Beth, please remember that no matter what happens, no matter how you feel or what you say or write: you are loved.

I don't blame you for being angry, dear. The neurologists shouldn't be trying to assess your mental state, not when you're there for a physical problem. They were outside their field when they strayed into psychological issues with you. They also denied you the care and treatment they should have given you. I'm angry on your behalf there. So please don't feel that you're letting us down by being angry; it only proves that you are human!

I'm thankful that I met you online, and not happy that I cannot meet you in person. Whether you're angry or happy, I"m here, I'm reading, and I'm thinking of you.

There was supposed to be a benefit concert in July for the Regina Irish Club dancers; because of Certain People in the club not being available to attend, the benefit was put off until tonight. My former music partner came back to Regina with his current bass player, and with a fiddle player and guitar player, we formed a pickup band. Between the five of us, there were two people each from Tir na n'Og (form Clagary), Prairie Dust (from Regina), and Cletic Clutter (a defunct Regina band). We considered calling ourselves Tir na Clutter Dust. Our groupies would be known as Tir na Clutter Dust Bunnies...

So we played tonight, and watched Irish dancers during the breaks. And I thought of you, Beth. Playing celtic music for four hours was far more work than I remember! But it was worth it to play again with Brian. Thinking of you kept e going for a few minutes when I thought my arms were ready to fall off.

It has been more than 24 hours since you posted your entry, so I hope you're having too much fun to bother posting tonight. Unfortunately, that's probably not the case, but know, Beth, that I'm thinking of you, and wishing positive thoughts your way.

Zen hugs for you, Linda and Cheryl,
Neil

Olivia said...

Blog angry by all means but tell us about it, Beth. We're listening.

Miss Fairy Sparkle said...

A beyond obvious question - are you ok, coz what is made it a day to sell all your stuff?

Concerned.

L xx

Elizabeth McClung said...

right now I don't have the function to post the rest of comments, perhaps Linda or Cheryl can do it.

Anon: Um, yeah, feeling sorry for me and pity - thanks, I'm warm inside, oh wait, it was "almost..."

Miss Fairy Sparkly: Um, I'm letting people know what is potentially available in from a few weeks a couple months. No need to let medical equipment go to waste and ashes have a hard time driving stick.

thea said...

Anonymous... no, I won't bother. You're not worth the space or effort typing.

Elizabeth, Shalom, take care, I wish you whatever you need and I just wish I had the wand to wave to 'make it so'.

yanub said...

Beth, I am sorry you have once again been hit by Anonymous Coward. He's an abuser looking to cause more harm. He ought to be ashamed of himself, but is too warped to care.

Laura said...

Beth,
I am sorry that you are feeling sooooo poorly. Please rest, drink what you need to, eat what you need to. Regain a little strength then tell us what has happened. Love to you,Linda and Cheryl.
Laura

Lisa Moon said...

Honestly, I just don't GET anonymous jerks who feel the need to troll blogs, bitching about what they don't like. Seriously, all you anonymii: get a freakin' LIFE.

Elizabeth: I completely hear your anger and completely agree you have EVERY right to be outraged at the pathetic 'treatment' you've received.

I wish I had something brilliant to say about how it will all be OK, but sometimes I am just not sure it will be.

I'm hoping and praying you're around for a long, long time to come - and feeling MUCH more healthy - I have to respect and understand that this might not happen.

If you leave this existence, you can KNOW that you have touched SO MANY of us with your writing, sharing yourself and your life. I see it in your comments left each day; I know it from my own personal experiences.

I wish for you to have everything you've not gotten from our rotten medical system. I wish for you respect, understanding and an AMAZING team of docs to diagnose and properly treat your WHOLE self, not just their 'inch'.

This might sound a little weird, but - just as I treasure the postcard you sent me with the cute little Yuri girls playing volleyball - I think I'd be proud as ANYTHING to be wheeling around in a former EFM chair, when you've got your new spiffy wheels. In fact, I'd probably brag to people about the brilliant former owner a lot, how kind, generous and amazingly strong and courageous she is!

AND I'm still sending out positive thoughts/prayers everyday that there is no reason for you to think of giving away all your supplies and mobility devices.