Thursday, March 18, 2010

Some training, some static during our broadcast....cue screen card and music

I apologize for this rather crap post which will be interesting soon. Or rather is not interesting because of having to go to Queen Alexandra and all that happened there and then how things went really left turn, and now not so good, if radiating pains from the heart across the back is to be believed. Bah, until I shee a hand shrivel….oh crap, and it is right hand too. Ah, I will be away tomorrow and one of several locations, um, bed, hospital or up at the Y trying to sweat because…..I was too ill on Monday – not at ALL like today, no, I am just the picture of perfect health, or would be if I was strong enough to move my head from where it has fallen on my shoulder. Actually that is an interesting way to view the world…..ahhhhk, oh my GOD! Sorry, that was my heart, I think the man with the big reaper is using it as my door knocker – yes, I am paying attention!

Oh, I went for a wheel, two going out today which I shall count as training. One was looking for Linda who claims she was not lost at all, and she is probably right, when it comes to time and places, I am sure to be wrong. I have spent a great deal of time today thinking about all the people I know and the people and lives they had, if they have a chronic condition, before that, the person they thought they would be, saw themselves as. Sometimes down here in disability world, it is too easy to pigeon hole someone into a disease, I know I do because I had it done to me over and over yesterday and realized that no one could either see me NOW, nor could they see the same ‘me’ that walked around before. And how that ‘me’ from before had all these dreams and plans that are still embedded, however unrealistic.

I hope I get back to put up the picture of the woodpecker. I have a manga on the wishlist I will get, Loudest Whisper 2 which is all about the sharing of a fantasy, and I will get that as it seems sharing fantasies is in many ways one of the most intimate acts. Yes heart. Lie down, stage right.


Neil said...

Sending healthy, positive energy your way, dear. As much as I can imagine will fit.

I hope Linda is well; and that you don't need the hospital.

Love and zen hugs,

Dawn Allenbach said...

Rest, dear. We'll want to see you soon.

wendryn said...

I'm sorry it's so hard right now. Death needs to find another door knocker!

Still reading, but I'm not sure what to say on this one. *hugs*

Baba Yaga said...

Sometimes interesting is not the point. Sometimes, I'm just checking in hopes of seeing you still there. Seeing you here and well-for-you would be better, granted. But I realise that that is not entirely in your purview.

In any case, a misbehaving heart cannot be described as boring! I'd administer a stern talking-to if I supposed the dratted organ would attend.

The pigeon-holing, and the becoming invisible behind the disease *do get boring, or something distantly related to it, rapidly. I find such situations engender a childish urge to shock...

Raccoon said...

Sounds like a four letter word -- "rest" -- might be in your future for a couple of days.

Try to be safe?

Olivia said...

Hi Beth - I'd love to see the woodpecker picture! Sounds like your body is REALLY not cooperating though. I hope you're getting some rest. On this blog we see the person you are and not just your condition/ability/disease.

Lene Andersen said...

Sending healing thoughts towards you and your heart.

Bonnie said...

I find myself thinking that a shriveled hand (I mean really shriveled) would actually be really Goth. Kind of like having your own personal Wicked Witch Hand. I mean, if the damned disease is gonna take function away from you, it could damn well leave something visually fantastic in its place, yanno?

And OMG! the Villainess soap is the awesome. I will hunt down that company and buy more when I run out. It also scents the entire bathroom, so every time I walk in there to do other things the bathroom smells great.

Elizabeth McClung said...

Ironically, this occurred because I FINALLY TOOK a BED DAY!! It turns out that quiet, not in study but way over in bedroom Beth is too quiet to notice as she overheats for four hours and becomes very ill. Watch out for that rest, it'll kill ya!

I am going to try another bed day but I hope I have better results.

I had to choose between the hospital and here in the morning when my kidney backed up (if you have felt that pain, even in looping you know what I mean) and my heart was shaking my entire body in attempts to try and stop 105-107 degree blood to go to my brain, which was causing micro seizures every few seconds as the heated blood hit any damaged areas. Oh joy.

I learned that I can get goosebumps arms at 103 degrees are exposed and not with the 105+ degree core - I have a high temp and I still am freezing. Sigh.

Did not push the button as the only thing they could do was put cool saline in my blood and if I waited in the ER bay to admit and waited to be seen and that took 3 hours, it would be too late. That really is the closest I want to come to 'out of my mind but concious watching my body burn up dying' - There were so many erratic beats we could not get a blood pressure OR a heart beat reading at all.

But still alive! BWhahahahaha!

Never, never want to be in a position to worry about not looking in the mirror to see if there is a ring of yellow around my eyes now.

Bonnie: With fever overnight, shivelled hand turned twice the size of other hand, and was a dark deep red. This color stayed when I got up finally at 10:10 pm, but has been slowly fading, even when I can't feel my left hand/arm at all.

SharonMV said...

Dear Beth,
I hope your heart starts behaving. Yes, resting quietly can be dangerous if no one checks on you. I have been burning & shivering at the same time - it is not pleasant, although my fevers are not at such a dangerous level. I hope you can practice the R word more safely.

I still have dreams & aspirations - different ones, but still they are important to me.

Dennis & I made it up to UCLA medical & I saw the immunologist. He is going to call the insurance company to get my IVIG coverage back. Only one problem - he thinks my dose was too high, so I'll be getting less. But he seems reasonable and even returned my phone call (within a few hours!)& answered my questions.


deadrose said...

You have to rest and get better, it's almost time for Sakura-con!

(I'm trying to bounce around gleefully, but it's not working very well at the moment)I can't wait!

Dagny said...

Behave Beth's Heart.



Lorna said...

Don't know if you have ever read any of Terry Pratchett's "Discworld" series, but an ongoing character is, in fact, Death. Or at least the "anthropomorphic entity that fulfil's death's function."

In that series Death only appears after the body has died to escort the soul to whereever the person believed the soul would go, but... occasionally... if the outcome is not quite inevitable, he shows up early and may even interact with select folks (those with the perception to see him). He is, BTW, a very traditional representation of a skeleton in a black hood with cowl and carrying a scythe.

It occurs to me that you should check next time you're feeling... *ahem*... 'poorly'... and enlist the bastard in doing some postcards. Might as well make himself useful.

Sending love...

FridaWrites said...

I have a bad upper resp. infection (worse than cold). Back soon, but checking in, love you. Sounds like we both need some rest.

e said...

Hi Beth,

I hope you do get some good rest, and not a repeat visit to hospital...

Your lovely postcard came and I hope my letter has reached you by now. I wrote it on the paper you sent...

Best to you and Linda!

Neil said...

Good morning, I hope:

It's good that you're still with us; not so good that resting causes trouble.

Olivia's right (thank you for stating what's so obvious I couldn't see it, Olivia!): we get to see past the baggage of your disease to see the real Elizabeth Effing McClung.

What I see is the EFM that has great insight, a world view that most people should envy, a loving wife and partner and truly spectacular marriage, as much love as a heart and mind can express, a way with words that (even when you’re posting while regressed to eight years old) I can’t begin to match, and more drive, energy and will to live than anyone else I know.

That dear Niece, is why I'm still here, still hoping for miracles for you, still sending healing thoughts, positive energy and prayers to you two. Please, Beth and Linda, give each other a hug for me!

Love and zen hugs,

FridaWrites said...

I am feeling better though not perfect yet--was really sick. Can't get out because we're dealing with preternatural Snowmagaddon again. (!) On the first day of spring.

My resting heart rate was 120 with a double dose of heart medicine Thursday and Friday, plus severe neuropathic/muscle pain and difficulty walking and using spaghetti arms again (from muscles rather than rheumatologic issue) and asthma. Felt like I couldn't get enough air. Then my body decided to attack me rather than the virus. Salivary glands swlled, no saliva, no restrooming and inadequate digestion fluids, no tears, immed. went from using 2 boxes of kleenex a day to almost none, though sinuses still inflamed.

Missing you--I have emails in my outbox started to you that I didn't have the energy to finish.

But the end of this week should be really good. :)

Husband and I finally got a chance to watch a movie together and watched one of your favorites last night--one of the best I've seen. He, like Linda, often has so much to do that he gets no break.