Wednesday, March 18, 2009

Screw Bronze: Zombie Edition plus me scared.

I am wearing an eye-patch (ARRRG!) and not really sure what day it is because I am not doing well. What stupid phrases we have, “not doing well.” Okay, normally when I have a ‘good’ day it means I can dress myself mostly and maybe go outside and a ‘bad’ day means I feel pain all day and feel like crap. But see, those are all above the critical thresh-hold called, “life sustaining.” Which right now I am dipping in and out of.
Yesterday, or recently I had a little bad medical thing, which became a big bad medical thing, which then became a bigger thing and started to include significant blood loss and other systems and suddenly it is past 5:00 am and I did not know know if I would be able to breathe off oxygen or when I lay down to sleep. I really hate being afraid, or terrified. Slow dying=no fun (remember that kids!).

I lay down to sleep anyway.

During the night part of my heart collapsed (an atrophied ventrical) and Linda had to pull my body over onto my back and help me breath, it felt and tasted like I choking in blood. That wasn't fun. Then after I did sleep a long time and got ‘better’, upon waking I kept passing out: or to be accurate I lost control of my autonomic system which included consciousness, breathing, and sluggy heart beating. Linda and Cheryl were on the phone: it was ‘if this happens’ or ‘if this doesn’t stop happening’ then we go to hospital. Because when you have black fingers and hands AFTER 8 hours of sleep, and stop breathing I would need to have a tube down my throat in hopes it would keep me alive.

So today was ‘rest day.’ Except I did a blog post for the Postcard Project and a few other things (like spending a few hours starting my sale of manga to raise money). So the rest part will start really soon (honest) because I am past the ‘little better’ and back to passing out again (like I just looked at the clock and lost 40 minutes somewhere…put on Twilight Zone music). Plus I don’t want to go to hospital tonight.

So I am no longer in the nice somewhat stable ‘remission’ section (though Linda goes, “What remission? X is degenerating, Y is getting worse, and Z, sheesh, that doesn’t work at all!” – hey, I never got my remission, so now I am having one, okay!). Instead I am back in the sucky, “I really hope I don’t die this morning” which moves to “this afternoon” and “this night.” I am stuck, here in this body and apartment because if ANYTHING goes wrong, like I don’t sleep well or I don’t get enough liquids or even my body decides to have some seizures, I just start tipping toward de-compensation (dying). Turns out like my computer data, I don’t have a back up (body).

I am sure I will be back inside, in the land of ‘remission’, and people will stop acting so scared and have voices go up several octaves when things happen. I hope that happens soon. So I am determined to read ALL the manga I have.....when I don’t fall head first into the book. And I will staying in bed tomorrow. (oops, there goes Linda passing out from surprise!) As I am having too many problems breathing. But I am still making choices right(‘should I gasp and fall sideways in the study or the bedroom?’)? And if I could think of a good joke about it all, I would say it (boy will Booth Gardner be pissed if I show up in a black body bag?!).

See ya! Don’t worry, I HAVE to live, I have an art book from Akadot coming, and I need to take pictures from the book for the blog. And I hear it is REALLY hard to blog once dead. Screw Bronze: Zombie Edition. (whisper: 'not dead yet')


yanub said...

Damn right, you can't die. You have too much to read first.

An atrophied ventrical sounds absolutely dreadful. Why it isn't also fatal, I don't know. Maybe your body is like Warner Bros. cartoon character that steps over the edge of the cliff. As long as we keep it quiet that it is defying natural law, everything is fine. So, shhhhhh! Let's not tell your body. And whatever you do, don't look down!

Wow, I looked at your postcard project post. Two blog posts and all those cards, and you having a Very Bad Day. Wow! That's a lot! Plus, I know you emailed a lot of us privately in the last few days, and went blog-surfing. So, at least, you know you worked hard before you had this latest collapse.

thea said...

Oh yes, that resting thing! Do it!

One of the most salient things of what you wrote was describing feeling and tasting like you were choking in blood. That feels scary and out of control, and I know things have been pretty out of control from what you're saying. I am listening and don't want any of you guys to go through this alone...

On a happier note, I want to tell you what I did yesterday. It's Fringe Festival time here in Adelaide, and I went to see the visiting Japanese artist Mieko, who is holding a watercolour exhibition. She showed us her paintings, chatted and then let us play around with some paints on handmate rice paper. Such fun! We got stamps on our paintings at the end, for good luck, as that is traditional. She was lovely, her work was delightful - lots of metallic paints, and work that looked like it would illustrate really really good fantasy books. Just wanted to share that with you...

cheryl g said...

Yes you do have to live. We have our tickets for Sakuracon, there is manga to read, there are squirrels to feed and I have packages to bring you.

PLEASE rest, make tomorrow a bed day. PLEASE!

Nancy said...

Hi! I like your idea of having a manga reading day--it sounds fun and relaxing. It's spring break week here, so I'm trying to think of fun and relaxing things to do myself--until Friday, when we're moving to a new apartment. [Hmm. So maybe my relaxing thing should be... packing stuff.] Also, thanks for the great museum post yesterday! Really enjoyed it.

Tanager said...

Be well, be well, be well...thinking of you here at Ironstone!

Lene Andersen said...

I really, really, really hope you get a bit better. Well, I'd prefer a lot better, but let's start with a bit and work up from there?

There's a postcard coming your way, should be there in a few days.

We're all here sending you strength.

Devi said...

I'm sorry you've been not doing well (and yes, it is a stupid phrase, but I have no better way of putting it). Wishing for you to breathe easy.

Anonymous said...

you belong in a hospital.

Anna said...

Sounds REALLY BAD. I hope that you have gotten your remission. Take care

Abi said...

Well, if anyone can blog from the dead, that would be you. Please don't test that theory, though. What I mean by that is that you mustn't die - it would be a shame for you to let something as trivial as death get between you and blogging, really.

It does indeed all sound terrifying. You write it all so matter-of-factly that it somehow seems like it might not all have been that bad, but of course it was. This is not a part of life that I like at all.

I am keeping my fingers crossed that you stay not dead, and thus have no reason (nor opportunity) to wreak zombie vengeance on us via your blog. Because that is what I am most afraid of, of course. Zombie Beth, out for large, well-formed, er, brains.


Veralidaine said...

Oh, no, another bad episode! And just when you were getting a little sun, and smiling a little more genuinely. It's so unfair how this happens to you. It makes me angry that you get a little taste of feeling better and then have it taken away. Just. Not. Fair! I want to have a toddler temper tantrum and kick the walls and scream.

Read your manga-- there is more coming. And you can't die yet, because I found a shirt that you would love, to order for you next week, and you still need to go to Sakura Con and be the bikini angel catgirl! So, get your rest and read lots of manga. And don't stay up all night working on postcards for a while, okay?

Lailah said...

I wish I could crawl in bed with you and read manga all day! At least I get to look at the pictures long distance.

I miss you. I'm your "flakey" cousin so I haven't come around much lately. (Well, actually I am your CFS cousin so I haven't come around much lately.) But I am always thinking of you and loving you.

TJ said...

You just take care of that ticker, Elizabeth. :( I hope you feel better soon, which may be a big hope and an impossible wish, but I wish it for you anyway with everything in me that can wish.

Tammy said...

What a horrible time this must be. I'm so sorry your health is so crappy. I couldn't imagine the things you and Linda, and Cheryl go through.
I'm glad you are NDY, and I am so sorry you are scared. I just don't know what else to say.

Raccoon said...

what was the date for BG? Yeah, showing up in a body bag would probably not be the most conducive to getting tests done and pain pills prescribed.

And there's Hawai'i to look forward to!

rachelcreative said...

So glad for the internet allowing your voice and your thoughts to get out there even if your body is not cooperating!

Rest today, read tomorrow?

I can't imagine how frightening this degeneration must be for you. Your determination leaves me speechless.

Maybe if you rest today you'll have something more in the tank for tomorrow? I know if I have a "bad day" and then do stuff on top it lowers my negative balance of physical and mental resources.
Maybe resting for you won't reverse the damage done but maybe it will postpone any more bits collapsing or dropping off for another day.

A goth turns into a zombie eh? Sounds like the basis of a good book.

Anonymous said...

Did you ever think that maybe you would "feel" better if you went to the hospital? Sorry, but I have to agree with a previous post who said that is where it sounds like that is where you belong.

Baba Yaga said...

Damn. & there for a few days things seemed - I dunno, *sunnier.

So what we have to do to get you to rest is supply you with catgirls? Please do, though. If you die this soon, we're all going to have to work out how to do reverse haunting, just so you know dying isn't allowed.

Be better soon. Failing that, at least *feel better soon. (But still rest! We want you to *keep feeling better.)

Elizabeth McClung said...

Well, the plan to Rest worked for several hours until it turned into the "must put more manga up for fundraising on ebay" - so I did that, I am up to 20 lots which is a miracle, but I am going to do it every day until sunday so I am selling 50 lots of manga and see how I do. And ALL my Yaoi, well all but one, are going (which will make some people strangely happy). Then I lost sight again and had a seizure and then I did some more work, but tomorrow except for a 2 hour medical, which I sort of don't want to need to be recusitated from, all will be fine (keep saying that!). Haha.

Yanub: Yes, I am working my way toward text! Actually the ventrical is an aspect of MSA, which I didn't know, which is why there is a pillow to block me rolling a certain way and one arm is always purple.

I hope the posts made sense, I started that the day before so I take half credit - but you know, use it before you lose it - what? One could lead to the other? No, I have no idea what you are talking about?

Thea: Thanks, and I really like hearing about the artist Meiko, that sounds like a great experience, I wonder how she got from Japan to there for Fringe? Why question miracles, just be happy for them?

Cheryl: Turns out when I have two pupils and they are focused different, I can't read, but I look REALLY scary! But I put on an eyepatch and kept on, even today, I do what I do, then I figure out how to keep doing it.

Nancy: I'm glad you enjoyed the museum post, really glad, and good luck on your move - everyone is moving but REMEMBER to send me your new address or I will be sending postcards for strangers, who will think me very strange indeed!

Tanager: Thanks, I will work on the being well, er, I can't work ON it, but I will work around it - hee hee - thanks again.

Lene: There are a couple postcards coming your way - haha! And yes, I will work on getting better as I have created a few jobs like my big manga sale - which I did today for some hours and then passed out for some hours after a few seizures. So I think everything is pretty much in control, as long as we still have meds. Only twice did Linda say, "That's it, we are going to a hospital!" Which is like 3 times less that the day before - that's improvement!

Devi: Thanks, I think a postcard is coming for you - I did it on the weekend, I remember, I remember since I want to get a bikini and go as Lum. I will get better, no problem or I will go to Sakura-con as um, any of the hundred sick and lying around heroines.

Anon: I agree, I even know the one, but I can't afford it, the one near me has so many complaints and has NEVER had a case of my condition before - and they are going to keep me alive, when they only pay techs to say until 3:00 pm? Errrrr.....I should be in a hospital, and I am going to one in two weeks. I just prefer not to be transfered by helicopter.

Anna: I got the remission, I am keeping in a drawer to pull out later when I need it!

Abi: Well I could have been banal and said that now that the tiger was no longer in the dining room, dinner could be served. But I did try to skip most of the gorey bits (I can't help the puns- what does Elizabeth die of, or did she escape?).

It is very hard finding pictures for, "and at four hours we thought we might handle it and come out the other side, except it continued for eight hours and that put me WAY over the edge." - but Not Dead Yet, and can see enough to blog AND get yelled at by Linda - got to run!

CJF said...

more hugs - big hugs - hugs with daffodils and squirrels dripping off them. Sleep well, rest well, lie in bed and ogle the pretty anime ladies....

Anonymous said...

you can't keep playing doctor and expecting linda and cheryl to as well. your case may very well be unique, but hospitals deal with terminal patients plenty and they have a lot more training and knowledge than you do in this field.

Raccoon said...

To Anonymous:
read some of the past posts. She's been to the hospital. They couldn't do anything for her, except watch her die, so they sent her home.

Besides, have you ever spent any real time in a hospital? First, the only place that could conceivably handle everything would be ICU/CCU. The only thing that she would be allowed to do there is to lie there. No TV, no computer, no telephone, no music/MP3, visitors only during visiting hours (and then only for a few minutes at a time), no socialization...And, don't get me started on the food!

(Can't you tell that I've spent lots of time in the hospital?)

Basically, they would watch her die. Yes, they would try all sorts of drugs. Yes, they would forget to help her change her position in the bed. Yes, she would get a bed bath with "No Rinse Soap" and "No Rinse Shampoo." Yes, she would get charged obscene amounts of money for all of this privilege...

My father, a long long time ago, once described hospitals as "a place to go to die." I've spent, over the past 12 years, enough time in hospitals... Maybe I've got a bit of a pessimistic streak, but I would prefer to live, rather than just staying alive.

Sorry, Beth, for that rant. You don't have to publish this if you don't want to. I just get frustrated at this, sometimes.

Neil said...

Anonymous: Beth isn't playing doctor. She does, however, pick up bits of knowledge, like any patient does, and she tries to remind her doctors - who do not know anything about her condition - what to do.

Unfortunately, the medical profession in Victoria aren't playing doctor either. So they appear to be sticking their heads in one of two places: in the sand, or somewhere more personal and equally dark.

Beth, if Jesus can be a zombie and still e a force for the good side, then I suspect you will be, too. But please don't test my theory!

Love, zen hugs, and positive energy,

Veralidaine said...

I take it the latest Anon has never had a rare condition, huh?

Well, neither have I, but my pets have, and believe you me, there have been times when the vet took orders from me because they had no clue what to do with one or another problem my pets were having. If that's possible with animals, which generally don't get quite such extreme conditions as Beth's (or if they do, they don't survive long with them), it's certainly possible that a human patient with a rare condition would know more about it than her doctor.

Doctors are human, too. They are learned and hopefully compassionate human beings (though the last is not always the case), but they are not omniscient. One can hardly expect a doctor who has never seen Beth's condition to instantly know more about it than she, Linda, and Cheryl have learned over months and years.

Elizabeth McClung said...

Anon: Well, it IS Dr. McClung, so actually I can play doctor all I want. Oh you meant MEDICAL doctor, no I leave that to Cheryl who pretty much qualified. Um....don't worry be happy! Hospitals are places that do not treat long terms and are there to stabilize and let go - at a certain stage, for example, heart erratics they will go "Tachacardia" and give me beta blockers (Because erratics within a certain heartbeat rhythym the 5 seconds you do the strip look sort of normal, except mine don't anymore but they don't look like a heart attack. So Beta Blockers will sort that out......except that it is beta blockers which when weak makes me stop breathing because it is telling the autonomic system - stop trying so hard - and my autonomic system isn't too bright right now. In the same way a person in shock you cover with blankets, unless you are me, because if you do that, I start going into a coma like state. See, I know things like this because of medical people going, "Shit, shit, shit" and pulling stuff off of me as fast as they can. And quite honestly, when you have a person who can talk to you while you watch their O2 stats drops on the monitor behind them, thier hands and arms turn purple before they pass out, all unnoticing anything unusual, you ask the question, 'um, what IS normal for this patient and how do to attain and remain stablized in it in order to discharge them?'

Raccoon & All: Oddly two of us have idependantly come to the conclusion from the stern imperious tone that this is Jimmy! My old GP!!! Whose parting words where a hiss of "You watch out, I read your blog you know!!!!" - um, super, it would have been better if you had read the hospital reports, you know the ones where the Crit and other blood readings were circled in RED with the note "Anemia: GP treat immediately!" Or the hospital reports on the Seizure cycles, or heck even some of the latest neurology journal articles. Sigh. Any hospital will do. When the time comes that I AM dead (ish) - there is still brain activitiy, or unsustainably alive, I will give them a shot at me, but not before. Because let's see, the Neurologist I fired and made a complaint to have removed as a doctor due to unprofessional behavoir is on CALL at the hospital the Ambulance would take me to - she is the neurologist (the one convinced the MRI, the Nerve conduction test and all other machines were broken) who will make the consult on how to treat me! Oh joy!

Anonymous said...

My gawd. If true, that's creepy, and rather pathetic.

How dare you not let your betters know best, and cock things up as much as they want!

Queen Slug said...

Yep, you'll need to keep on living because I am really waiting for the Sakuracon bikini pics.

Sending love your way.

Anonymous said...

I am not your doctor, and I've spent a lot of time in hospitals as a patient w/ a rare and chronic disease. the system isn't perfect, I couldn't agree more. I question your rationale, that having a phd or whatever it is could be an appropriate substitute for medical school and residency, or access to acute care and treatment. raccoon is not accurate in her description of any hospital I have ever been in, which are many, but I'll take her word for it anyway. for someone that has a phd and is as smart as you are, it is truly surprising you would presume so much in a field outside your own.
at least I tried.

Dawn Allenbach said...

Too much manga to be dying now.

I'm glad you're still around, nd I'm sorry I hven't been. This teaching thing realy keeps me on my toes -- so to speak.

I'm going to go home soon and relax for a while since I was in the lab late last night finishing today's lecture. Well, I'll relax until guilt makes me start reading school related things.

Be well, sis!

Anonymous said...

Ummm Raccoon...if someone is able to be on the computer and watching tv and feeding animals or whatever else, chances are they DO NOT belong in the ICU. Maybe you need to check yourself before you go off on others.

Elizabeth McClung said...

This is getting absurd, this is NOT an Anon fest - of which I think we have three, maybe four. The imperious male tone is easy to identify, I am not sure of the rest.

Okay To Mr. Imperious Anon: Having a Ph.D and a rare disease and a sis who did premed and medical care in field work and in hospital is not "playing doctor" as you put. You can't have read here long because of something I will leave to Raccoon to explain.

I am more of an expert on my disease than anyone in this city, that is what the head of the ER's hospital in town told me. Now, if you have some good reason I should NOT believe the hospital or the ER doctors, please inform. If you HAVE a rare disease which is chronic and life threatening, then you must have a WONDERFUL hosptial like the MAYO down the road. Everyone in MY town has a story of someone who is undiagnosed. One person who I know went to the hospital and all the specialist in the area repeatedly, for five years, with a chronic condition, undiagnosed - she went to the Mayo, it was diagnosed in two hours: Celiac's Disease - not what one would consider a RARE disease.

If you really have a rare disease, in which the slightest incorrect assessment could kill put the patient in prolonged harm, and you advocate that these people go to the hospital; who will be asking the PATIENT - the one with the experience - what to do, then I am concerned. If I die, let's say you are right and you get a gold star unless your "At least I tried" when you haven't read enough of the blog to even know what my condition IS, do you? Are you aware of its presentations? Unless that comment, which by the way is the same one Pontius Pilate used when literally washing his hands of Jesus, was just a sort of 'Ya can't teach some people'.

So teach me. When the only current way to hope to recover is rest, and whether most of the drugs which induce sleep also depress or inhibit to some degree breathing, and the problem is I am fatigued to the point of not breathing; and I have hypersensativity to sound due to both my medications and the seizures (both common side effects), and have not slept in a What do you advise - I can be injected with adrenaline to keep my heart going and me alive, but if I don't sleep, I can't regain strength - what do you advise? What do you advise? I have a disease which HAS NO TREATMENT, has no treatment for most of the symptoms, there is no slowing, no stopping, no diminishing of the effects of it except in peripherial areas. What do you ADVISE? When the heart specialist says, "I have never dealt with a patient with autonomic failure" and won't touch it; when Neurology who diagnosed won't touch or even further test it, when Internal medicine, when Endrocrinology, when all the specialist won't touch it and when those in the ER give drugs saying, "Well, I hope this works as it is supposed to and doesn't kill you." - WHAT DO YOU ADVISE? It isn't ER, it isn't HOUSE (by the way if that guy called an endrocrinologist once in a while he might solve cases in 5 minutes instead of 45) - there are diseases that are rare and you don't get to go home at the end of the show. If you had read over a long time you would know that recently I presented with a fixed pupil: the sign of blood on the brain and a stroke. If I went to a hospital, that is how I would have been treated. I would most likely have died. What I had was MSA fatigue, which can make autonomic things, like your eyes dialating or not, to fail. Because we are so unused to these constants in our life failing, we only see them in emergency situations. I have heart autonomic failure seen when a person is in last stages of Lung cancer - should I get Chemo? No, because I don't HAVE lung cancer. Fixed pupil dialation is presumed to only have ONE cause. Instead I went to sleep and found out there are TWO causes sometimes (besides forms of eye damage).

Anonymous said...

I would love, for once, that for any of the medical claims you make, that you back up the claim with a reference instead of just presenting everything as fact.
Unless your 'sis' is an actual MD, she shouldn't be acting as one, and if she has been to med. school and worked in the field she shoudl know that.
I'm sorry, but you do not know everything there is to know about medical care. the fact that you refuse to admit this is very telling, along with the constant claims without any supporting data. how does one really know that a ventricle has collasped w/o diagnostics? who stops breathing for minutes at a time and doesn't seek acute care?
the more you argue back with dubious claims the more I think you are a manipulative fraud, esp. with the constant fishing for money and gifts.
usually when someone constantly claims that the world is against them the way you do, it's obvious who the real problem is.

Elizabeth McClung said...

I would love, for more than once, that you give me the dignity of assuming I am NOT like you, I do not have to hide my name, or anything else. A reference? I am not a journal article, though I have tried hard enough. I have posted pictures, and videos, and comparison pictures from a few months to another and I have videos on Youtube, and Vimeo, and what do you have besides some odd hatred for anyone who disagree with you as you hide behind the "Anon" - I think YOU need a hug, and a postcard - I can't provide you the HUG but I can provide you the postcard. Just send me your name and address and your interests - you don't have to say you are Anon, and you will get a postcard, FREE. There, now you can ask for gifts, and you will get one, from me, every two months as long as I am alive, as all the other people who comment here will attest. And if you do give your name and you do keep up correspondance, likely I will send you a gift as well, or some sort of 'surprise' to your day. If you read the blog, you will find many links to newspaper stories - I think maybe even a picture or video of ER. But the question is WHY do I HAVE to prove myself yet again, if you are a person with a rare disease, then you know that diagnosis takes several years often, that the scars of being called a liar are ones we all share - we all share them, right Anon?

Anonymous said...

Maybe people post with anon, so they don't get harassed by disagreeing with something that is said. And one shouldn't assume that males are behind everything either. I'm sure what anon "said" is what A LOT of people "think". He/she was just brave enough to put it out there. I can see their not about what someone does or does not know about your disese, but rather the equipment that a hospital has to verify some stuff. It is amazing how you can have black and blue hands and not remember yesterday and you stop breathing for long periods of time, YET you can post these long well written blogs. HHMMMM.....

Yeah I'll "hide" behind anon, cause I see how angry you were at Lindas boss and how you asked people to not (wink wink) harass her.

Devi said...

"the constant fishing for money and gifts" (end quote) - funny, I remember very little of Elizabeth ever asking for (let alone demanding) anything, and a lot of her giving to others (postcards, gifts, her time and words).

"I'm sure what anon "said" is what A LOT of people "think"." (end quote) - "Lurkers support me in e-mail!" (sorry for getting snarky on your blog, Elizabeth)

yanub said...

Devi, I'm with you. I've received lovely gifts from Beth, totally out of the blue. And that Beth can do some things one day and not the next doesn't faze me at all. Not every disorder is stable. Nor does it faze me that she doesn't go to the ER for every incident. There are a lot of us who have learned that a trip to the ER is an expensive waste of time. If all they are going to do is throw their hands in the air and look at you funny after running a series of expensive tests, you may as well stay home.

Also, Beth never encouraged anyone to harrass Linda's supervisor. I continue to live in ignorance as to said supervisor's name or place of employment, despite being a regular reader and private correspondent. What Beth did was joke about the ridiculous fear that said supervisor has of her. I wonder about your agenda, Anonymous. You seem to be full of hate.