Sunday, September 28, 2008

A typical day? A nice card and determination.

It has been a hard few days. The good news is that I sent out 22 postcards and didn’t break two fingers (just badly bruised). I am on a heart monitor, and I go on. Were there seizures, erratics, weak pulse, faint pulse, lack of breaking, aspiration, having to breath head down, too weak to move any part of my body? So you mean a typical day? Haha. Well maybe not typical since I did strip down because I felt bad about something, as is, NAKED, totally completely naked. I also cut myself on the leg with the open part of a not very sharp pair of scissors, many times, until the blood pooled from one leg to other in a little V pool of blood. It did not hurt, it does not hurt. Maybe I felt it, I can’t really remember.

We went and played air hockey, I will write about that tomorrow when I am more recovered. It is not a good picture of me but it does show how gaunt I am. I said to Cheryl that without teeth, I think my flesh would meet in the middle, I am so much a skull. She said that I should try to keep my teeth and she agreed. That the humor we had. And some chortling over making little comments on postcards.

Here is one of the postcards I sent out. It is a special one, called a Bromhide Card, which has a transparent Anime Cell in it. On the back I used some of the hand-painted craft from SharonMV. And when I was done with my little message (and Japanese stickers), I hope the top looked as artful as the rest. I wish I had enough Bromhide cards for everyone but it is hard to get three (which is what I have) much less 100+. Still I will try to send cards that are unique and special, one of our cards we have sent 20+ out of I found today as we are running out. I said to Cheryl, “Oh, I see they are $6.99 a card.” She asked me if I still wanted to use them. I told her of course, “I didn’t pay that so let’s live it up! And everyone gets the best!”

I wish I could tell you something deep or amusing but this is just one of those “Blogging by sheer determination to keep posting” posts. I will come back, I will feel things again, even if my body doesn’t. I believe in a world without abilism, I believe in people caring, and people helping each other. I just don’t really believe in me right now. But I will hang on until I do.

30 comments:

Raccoon said...

you don't look that bad. Of course, in the neon green light from the table, anyone would look a little ghastly.

That card looks great! Let me guess, if you hold the card up to the light, the light shines through the cell?

Someone's lucky!

And thank you for writing -- I've been checking about every hour that I've been up since midmorning Saturday.

I can't believe I'm saying this:

I'm glad it was nothing more than the usual this weekend for you...

Teff said...

Wow. That is almost all that I can manage to say after an entry like that. I think you look beautiful in your picture, a little thin maybe, but you are definitely beautiful. I love how you play air hockey too! I used to love to play it, but I'm so busy with my life I rarely get to go out and play anymore. I love your post card project! I went to see what it was about, and that is so cool! I saw some of them and the art on them is incredible! :) I hope you don't mind, but I want to link you?

Elizabeth McClung said...

Raccoon: true enough, I don't look that bad, but the dietian is coming for a tube evaluation so - hey, no more being fed for me! Woo hoo!

Yeah, it seems to be a multilayered cell. Oh, there is nothing wrong with your cell, it is just the framer put the second backing on a little off which made me irritated becuase I didn't have the dexterity to correct it. That was all.

Oh, sorry, this weekend was a bit more, but, healthwise, I am being monitored, it is just REALLY boring filling up this two week heart monitor twice a day and having to download it. Hey, seizures and erratics are like...um oreo's and cookies?

Thanks a lot for caring, I just couldn't until now; things were of the things which are times that even I don't talk about, if you know what I mean, and it went on for quite a while. I will try harder next week not to fall down (though I was pretty late on Thursday, I think I posted like 12:40 or 1:00 or something).

Teff: Well, sure you can link but don't you want to send me your address so you can get a postcard too? this was my first time playing air hockey since they reopened (uh...? sometime this year?). And I had to go back twice to get the machine open. But doing air hockey is worth doing, even badly! hee hee.

thea said...

Oh beautiful beautiful cards, the bromhihde (sp?) ones! But all your cards are cool in some way so what do I expect...

I played air hockey this weekend too, first time in a couple of years. Had never realised how exhausting it was before! Kept dropping the device that one holds, which at least afforded some amusement to the group! I tell them that is what I am there for!@

Hope you have a better week than weekend :)

Anna said...

Hi

Well, being on a heartnmonitour, isn't that good. That means they are checking you? About the scissors, uäk, don't do that. (As if you have never heard that one before.)Please don't do that t your poor legs, even if they can't feel it:)

I agree with racoon, in that light, I would certainly look like a halloween caracter as well.

Good luck with the tube...(isn't that an odd thing to say.)

kathz said...

I believe in you.

SharonMV said...

Dear Beth,
I've been thinking about you all weekend - worried that you were having a bad day (or several). I'm sorry you had a tough weekend. Thanks for blogging tonight. I'm sad to read about the cutting, but I can understand how you get to that point.

I'm glad you had some fun playing air hockey. And 22 postcards!! That's a lot even on a good day. The bromhide card is wonderful, I'm honored that you chose to use some of my stickers on it.

I have my appointment with the rheumatologist UCI medical center tomorrow, so I'd better try & get some sleep.

Sharon

rachelcreative said...

I love air hockey but have only played once since I got ill. Maybe I could find a way to handicap Paul so we can have a slower paced game - obviously I mean blindfold him or something rather than kneecap him ;o)
I still need him fit and healthy where possible!

I saw my lovey GP this week - she is supportive and kind just not proactive. But that will do for now. She was enthusiastic about supporting me in applying for a blue badge for access disabled parking so soon tackling long stretches of gravel car parks may be a thing of the past :o)

You're doing really well with the postcard count! I must pull my finger out and send some cards out to friends myself! You are showing me up ;o)

desdemona said...

Well, I'm glad I stuffed some postcards into the packet that's on its way to your place then ;-) If you think they're crap just toss them.

I agree with everyone that's said you look beautiful. The green/blue light would make anyone look horrible ;-)

I wish I could give you some of my butt. I tried to get into my pre-pregnancy jeans today and I can get them up to my.. well, up to just above my knees to be honest. That was a bit depressing actually. I don't feel fat, I just feel exhausted really quickly, which I guess is because I've really put on a lot of weight. Oh well. I just need to quit eating sweets I guess. (Yeah, like that's going to happen!)

Anyway: I'm envious about the airhockey! I'm glad you're being monitored, hopefully the doctor(s) will finally realise that it's not all made up and that you do indeed need better medication!

Anna said...

Not a thing to say, to you in a bad day, maybe. BUT I AM SO HAPPY. Maybe I should ask my GP to move to Canada! The good news is , they haven't find anything wrong. The bad is, it's still kind of bad so they diagnosed it IBS and sending me for a coloscopy, just to rule everything out.

So why do I prayse the GP. Because, he could have dismissed me as just being neurotic, and skipped the first examination and coloscopy. But instead they tested the blood and the rest for almost everything, they did examination, he talked to me, listened. GOD, I wish you had GP's like him. (He doesn't understand my swedish completely ALL the time but fine, he tries to. ***** for my GP

Sorry just so happy I had to tell you.

Tom P. said...

I was listening to Nine Inch Nails this weekend and when the song "Hurt" came on I thought of you:

I hurt myself today
To see if I still feel
I focus on the pain
The only thing that's real


Did you get the card I sent (not a postcard - a regular card)? I have another to send to you.

cheryl g said...

You know sis, they aren't so much postcards as they are works of art by the time you have finished them.

Air hockey was lots of fun with some really close games. The hydroboat one? Let's just say it would be better if no one ever let me drive a real hydroboat. It sure was fun though!

Does it help any for me to tell you I believe in you?

Lene Andersen said...

I believe in you - will that do until you get there yourself?

Erm... the stripping? Was that in public? And did it help you to feel less bad?

To you, you look gaunt, to the fashion industry, you look simply mahvelous, dahlink! And you still look like you, although I'm with Cheryl - keep your teeth!

Beautiful postcard. Just gorgeous.

Neil said...

It's good to hear from you again; I too checked several times yesterday for any news from you. The "usual" isn't great, but you're still here, and that's good for us. Greedy, aren't I?

You're not looking any worse than most super-models, dear.

You filled the heart monitor's memory twice a day? And I imagine the doctors still think you're faking it? You should take the test results to a medical school and see what the students say. It might scare some of them out of becoming doctors, which would be a good thing in some cases...

The cell is gorgeous, like you two.

You've been listening to the inner voices again, haven't you, Beth? Please don't; they lie to you, and you're worth so much more than those voices claim.

Love and zen hugs,
Neil

yanub said...

When you have days and weeks of not believing in you, remember that you have many friends who do believe in you. It's not the same thing, I know, but I also know that it is the faith others have in us during our dark times that keeps us pushing.

A feeding tube! Well, that's a good thing at this point, since it has been so long since you have been able to eat properly, or even have the desire to eat. So, I'm happy to know that you will be getting better nourishment into your body. This may be a good time to ask about a ketogenic diet. Hey, if you can't taste it, it may as well be ketogenic! Of course, this assumes that you have a doctor who actually knows what a ketogenic diet is, and why someone who has seizures might want to try it.

I agree with Raccoon, that green light would make anyone look bad. But those dark circles under your eyes? I suspect those aren't solely due to the lighting. It's obvious that you've been having a rough time lately. Here's a hug and a kiss, all maternal-style, for my sweet Elizabeth. You're a wonderful girl, even when you don't feel like it. I'm glad you and Linda and Cheryl were able to go have a good time playing air hockey. More air hockey. Less cutting. Yes, that's a good plan.

Well, I'm off to work. Me and my crappy neck. Seriously, if it wasn't for skin, I am sure my head would be rolling on the floor right now. It's damned annoying.

Abi said...

You mostly just look cute in that photo. Please do make an effort to keep your teeth, though ;-)

Thanks for updating us. I really am on tenterhooks when you do not update for a day. I know that I say that you should take time off when you need it, and I believe that you should (I was really hoping that you were just too busy having a good time to update), but it is great to hear from you again!

That postcard is gorgeous. Somebody will indeed be very lucky.

Neil said...

Beth, believe in yourself to the best of your ability. We ALL believe in you.

With much love and many zen hugs,
Neil

Veralidaine said...

I think you look beautiful. But then, that's kind of a comment on the model look-- gee, our idea of beauty = terminal degenerative disease that causes flesh to waste away! But, your arms are still butcher than mine, so I say you still look like an athlete to me.

The postcard is lovely. And I am so glad your sister Cheryl is there to make jokes with you. Wish I had the courage and the funds to do the same.

Tayi said...

I am so impressed at your ability to keep writing every single day. I keep telling myself my writing would improve if I wrote more- which is true- but so often I sit down and look at the screen and just don't have anything interesting in me to say. If I were to write every day it would be supremely boring, but you write every day and every day I love to read it.

You must just be more interesting a person than I am or something!

Joan K said...

Beautiful postcards. And I wanted to say how glad I am that you got that backpack. I'm glad you post, even when blog worthy events are few. It's nice to know you are up and writing.

Caroline said...

Beautiful postcard - keep blogging by determination - I love to read your stuff
x

OneSick said...

Elizabeth,

I wait every day for your words and cling to them.

And regardless of the words you write; be they joyous, horrific, bereft or even a tad depraved; they are yours and my day is better for knowing you write yet.

I believe in you.

One Sick Mother.

Elizabeth McClung said...

Thanks, by the way, I am trying to go back and do comments on the Brain blog a couple days ago so if you commented there I either have or will get to you!

Thea: Wow, cool, we both did air hockey together! I really like the Bromehide cards but I can't get many of them, even in Japan I only could buy 2 I think.

Well, I couldn't feel my hand so much so it turned up on the table and then was hit at high speed by the puck, which is why it is in ice, it was hit on the nails, then they broke and it went on to hit the fingers. The good news is that....breaking the nails stopped the fingers from being broken, AND, I DO have some feeling since I sort of curled up. AH! Note to self, keep all other fingers off the playing board when doing air hockey!

Anna: Yes, I don't know why I did it, or I did, becuase I had woken up from a nightmare, I was on the toilet, the scissor where there and it was like the voices from the nightmare where there too, and everything was unreal. So I just kept doing it until the blood was flowing and then I stopped. Hmmmm, yeah, that doesn't sound mentally healthy.

Good luck on the tube? Um, yeah, they should get LOTS of readings, assuming their computer doesn't break again!

Kathz: Thanks, I really have appreciated your support after all this time, and across all this time. I will go on, win a battle, lose a battle, go on.

SharonMV: I have to wonder what you do? For me, it is hard to stop the habits of a lifetime: fight harder the worse I feel, when bullied, attack back until you can attack no more, never give in, and when depressed, exercise and if that doesn't work, then work and if that doesn't work then focus on something to avoid 'the voices' - but being ill, and having to sit still, and having limited strength, how do I stop being angry when I am treated like an unhuman, treated by a person as if THEY are the ones to determine the worth of how I should be treated (has God entered the room? I think not!). So a battle I won 4 years ago, I lose now becuase I have nothing else working and it isn't going to work either - am I going to starve myself now too? Unlearn my whole life? Sorry, these aren't questions for you but questions of frustration of how to deal with being me, while being sick - I didn't get a new personality, I just can't do what I usually do.

I'm sorry I worried you and I'm glad you are going to see the Rhummy, I hope that goes well.

RachelCreative: Yes, you can get like 3 out of 5 in a GP at most, I have one that signs papers but won't initiate. Oh well, work with what you have. I don't know, I am slower, so I think I should have a bigger paddle thing to defend my goal since I tend to move it AFTER it has gone in.

Not really, my photo count is poor, and my book count is worse, so postcards are where my energy is going. This was my worst week in 5 weeks, but I did what I could do and keep my priorities straight.

Desdemonia: Ur, I have all the people written down but if you sent postcards, then they are probably already ON thier way to people. I tend to turn around and use people's cards as quickly as I can - part of it is becuase of my brain, I soon have no idea who sent me what so you could end up getting your own card back!

If it makes you feel better, even when super athletic, it stops you from getting those jeans over your thighs, because those jeans are made for the skinny, lightly exercising fantasy female out there - not us real humans, I only have two pair now as I am losing more weight so may go down to a size 6 soon (my top is still a medium to large in juniors - wheeling muscles I guess).

Oh, they know the heart stuff isn't made up becuase they have large strips of it when I was in the hospital, and now I am on heart medication for some time. This is to help them to determine if a) they need to do some sort of surgery or b) put in a pacemaker. The heart stuff is so regular in it's irregularity that they have lost of recordings of that!

Anna: I am very glad they took you seriously and that they did the tests and that they are going to finish them and then if you are IBS, maybe we will end up on the same pro-biotic?

Tom P: You are way too cool to be a father, nine inch nails? Yeah, it turned out to be one of those weekends. I did get that great dark fairy card. I want to send you a private email but I very much appreciated getting it, was was a highlight, since I like getting delightful things.

Cheryl: I blame the tilt of the table - I mean you only got ONE POINT better right? But Linda, what happened there, talk about getting your game face on!

I am a good driver, I won the boat one easily, NOW can I drive?

cheryl g said...

I don't think you are a bad driver. I'm just not comfortable with the parts where you pass out with no warning.

Tammy said...

I was worried, now it seems like for a good reason. I'm sorry you are having such a horrible few days. I care.
Love the card, and the stickers are amazing.

Neil said...

So that's how you damaged the fingers. I was guessing a wheelchair spoke got them. Still, ouch!

Even when you've nothing to say, you're still eloquent. "How does she DO that?"

Rachelcreative: I'll take you on at air hockey; we should be evenly matched since I've never touched the game. :)

I'm going to have to look into this Nine Inch Nails group. They're the favourite group of a retired friend of mine - there must be something other than foul language.

Love, hugs, and belief,
Neil

Neil said...

Passing out behind the wheel without warning: I can empathize with you, Cheryl. That would be just a little too exciting, wouldn't it?

Hugs,
Neil

Elizabeth McClung said...

Lene: Um, it was sort of public, and it was because I WAS bad, inherintly bad, more than it made me feel good. Eventually, things became okay again and I allowed myself to become attached to objects and not emotionally detatch so everything could be destroyed and I would still BE. And once that happened, I decided I could wear clothes again.

Well, as today showed, if we want to keep the teeth, I think I need a mouthguard.

Neil: I don't think they think I am faking it, I just don't think they know what to do, as I have a structurally perfect heart (except I have an AV node in the upper right and one in the upper left), and it does a lot of non perfect things. So what to do. Gather more data. After this I think they can put a chip in me to gather data for a month or months. I expect ER will end up having to make the decisions as the specialists are "still gathering data".

The usual ain't great but I can't bounce back from it - sort of didn't, kind of nosedived, but hey, I am just reflecting the US economy (has anyone tracked if the DOW causes my seizures?)

Yanub: as for the diet, since my doctor only believes in two types of seizures (Grand Mal's and "pseudo-seizures'), not partials or absance or the other 200 common ones, I doubt he knows that diet, or would recommend it until a specialist told him to.

Actually, when I do not have a personal reason to go on, it IS the many people of the blog who give me a reason to get up and try to metaphorically slap myself into a "go get em" attitude. Support mostly, and sometimes, my own inner fear that I will fail them, the people who care about me online.

So, you are FOR keeping my teeth but talk about your head only being kept on by skin - wow great role model...NOT! (I'm just giving you a hard time).

Abi: Like I said, I would love to give everyone one of them and I do give everyone cards I hope on a regular basis, and if you haven't gotten one, speak up! um, teeth stay, check. I don't know if the person was more anything, it just seemed the right card for them at the right time.

Veralidaine: Horaay, I found my market, I just need to hang out with models to look normal! Woot! My arms are not that butchy, and you probably aren't over six foot so there is a lot of bone and bit of wheelchair pushing there.

It is good to have people to joke with but with the comments and cards back and forth, I do feel like I can joke about things with you (like, I just sent you one!).

Tayi: I took my inspiration from the Bookman's Holiday which is a series of quotes from writers and a rather famous one said the greatest inspiration is having sticking plaster between one's chair and your pants. Or rather, often I delete the first several paragraphs, or did until recently, I still do on good days. Write until your mind latches onto an idea, write about the window and the ant and the ants being a collective and if they are a collective are there lonely ants and then you have a topic which is why in society are there so many groups and yet so many isolated people. Dunno, after 15 years, it gets easier - I don't suppose that is inspirational!

Joan K: I write, therefore I am (like one person I know who could be said: I pun therefore I am). I am glad I am getting the backpack too, they emailed to say I should have it in a week. I can track it in REAL TIME.

Caroline: As it happens, Determination tends to be one of my strong suits, as does verbosity. So expect lots more of ramblings and if I can stop having bad health for a day or two, some actual deep thinking (or medium thinking?).

One Sick Mother: thanks, now you have inspired me to head a bit more toward the depraved! ha. who needs an inspirational crip, we have plenty of them, but a depraved one! Now that is something special.

Cheryl: See, you ALWAYS have these excuses!

Tammy: Thanks, I thought of you, but then, you might want to go back and look at some pictures!

yanub said...

I thought you were done with Dr. Demento. Surely there is someone else in Victoria who can see you. Someone who actually likes complicated cases instead of merely tolerating? Or at least someone in Vancouver?

Yeah, I do want you to keep your teeth. I'd like to keep my head where it is supposed to be, too. Stupid head is just the traveling kind, though. I was shocked and alarmed to find it had got a passport and a tiny suitcase, but I pointed out that it wasn't likely to be able to carry that suitcase without arms' help, and it gave up that plan.

Dawn Allenbach said...

I too recently have been having "I don't believe in me" days. They can be a bitch to shake.

Beautiful card.

Speaking of cards, I got the one you sent of the salmon and all those fish stickers and the spider sticker, the Australian croc crossing sticker, and the Hello Kitty as ladybug/ladybeetle sticker. LOVE IT!!!