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Author Topic: Blog Thread 4; Live Free or Blog Hard - 'cos we all like blogging  (Read 543826 times)

Loki

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Totally unrelated, but a friend of mine has had the "blurry sight" thing recently. I hope it's not from the same cause :|

All the best to you and your family.
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Carl-E

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Thanks, all.  But basically we're in the same shit-go-round as we were three years ago when this all started.  Only now, there's really no hope of her getting any lost nervous function back.  It's a matter of making life possible with what's left. 

She is, however, an amazing young woman, and will take whatever she has and do wonderful things with it. 


For the newer people, here's a synopsis of what's going on from an old post in another thread;

Quote
OK, here's the synopsis;

At 16, my daughter, a pole vaulter, runner, flag twirler in the band, and all around great kid, got a painful tingling in her feet one day that worked its way up her legs over the next week.  The emergency room was baffled.  When it hit her waist, she was shipped to Children's in Pittsburgh, where they thought it might be Guillain Barre (it wasn't) or transverse myelitis (it wasn't).  It got to her diaphragm and she nearly stopped breathing.  It hit one side of her face, and she looked like a stroke victim.  The best they could do was stabilize her, and after 6 1/2 weeks, she was sent home without a diagnosis, but with lots of expensive therapy so she could learn to walk, breathe, pee (with a catheter) and eat again.  We were referred to Johns Hopkins, where they said it was all in her head.  That place still leaves a bad taste in my mouth...

A few months later she was having trouble keeping food down, so we went to the gastro, who looked at the old MRI's... and spotted a tumor on her thyroid that everyone else had missed.  The thyroid was removed with all the surrounding lymph nodes (it was metastatic), and after a lot of hemming, hawing, and long hospital stays as more of her digestive system crapped out, it was finally determined (through an international conference call of over 30 world-famous neurologists) that her immune system was trying to kill the thyroid cancer - and instead, had put her entire nervous system under attack.  She wound up with a feeding tube, a wheelchair, a visit to the Mayo clinic to confirm this disease (called paraneoplastic syndrome, only about 100 - 150 cases anually worldwide).  She will have a lifetime of huge medical expenses.

She was prepping to go to the US Naval academy.  She wanted to study Marine Biology.  She was lucky to graduate high school - she can't handle college yet, and will probably never be able to work in any way. 

She's 19 now, 20 this summer.  Though she needed the wheelchair for distance, she could still walk some - on her toes, with crutches to stabilize her. 

With the current exacerbation, she can't even do that.  She's now got a life sentence to a chair.  Hell, she has "drop-foot" now, and will need to wear special braces on both legs to keep from damaging her own feet. 

And, as of this evening's conference with the neurologists, they still know nothing.  Most of the tests will take several weeks to complete.  If the cranial pressure doesn't stabilize, they may have to put a shunt in her head. 

Yay, brain surgery.  Just what she needed. 



It ain't House. 
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nekowafer

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I can't even begin to imagine how awful that is, for her and your family. I offer all the digital hugs I possess (it's a lot).
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what she said was sad, but then, all the rejections she's had, to pretend to be happy could only be idiocy

Patrick

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Damn. I was just about to comment on your post about the spinal tap, making some wisecrack about how much I fucking hate that movie

Damn that got heavy quick, holy shit, I am so sorry
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Carl-E

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I'm sorry.  I don't usually dump like that.  I was petting her kitten, who's pissed off that her mistress has been gone for almost a week (OK, she's a grown cat now, but only weighs about 4 pounds) and I just... I dunno.  Everything I do seems like trivial bullshit most days.  All my problems - my back, my knees, my frustrations with my career and work and unemployment, the fact that we're behind on the mortgage again... it all takes a back seat. 

It has to. 


My only other social life is church based, and I'm not christian.  So the wonderful people there just always sound hollow when I talk to them.  All their platitudes and comfort mean nothing, compared to the digital support I get from you guys. 

Which is really pretty fucked up, when you think about it. 
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nekowafer

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I'm just glad you have some meaningful support, no matter where it comes from.
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what she said was sad, but then, all the rejections she's had, to pretend to be happy could only be idiocy

Valdís

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Yeah, I didn't know any of that, Carl.. Heavy..

(I should make a Blót dedicated to her well-being and fortune. Eir would have to be a grade-A bitch to overlook it. <3 )
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Now the sayings of the High One are uttered in the hall
for the weal of men, for the woe of Jötuns,
Hail, thou who hast spoken! Hail, thou that knowest!
Hail, ye that have hearkened! Use, thou who hast learned!

Bluesummers

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All their platitudes and comfort mean nothing, compared to the digital support I get from you guys. 

Which is really pretty fucked up, when you think about it. 

No, what's fucked up is that they can't be more down-to-earth and actually REALLY listen to you like people here do. I've been there, they're really quite useless.

Not that this quite compares, but my wife has rheumatoid arthritis...she had to drop out of college twice for medical reasons, and can't work due to limited stamina.

The point of me mentioning this is because all of her friends, from high school, college and other places, abandoned her. They wouldn't give the time or effort to understand what she's going through. She found people online in auto-immune illness forums who help her cope, give supportive tips about daily life, converse about treatment options, etc.

I know that paraneoplastic syndrome is much more rare, but it's worth a try, if your daughter can use a computer, she can get some support through friends, even without ever seeing their faces (sound familiar?). She sounds like she has the drive, the willpower, to carry on. And that's what separates those who have given up, from those who refuse to let their condition define them. It is that which is most important.
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Worry Hat, Engage!

Redball

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Which is really pretty fucked up, when you think about it.
We might respectfully disagree.
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mtmerrick

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I much prefer my online life to my IRL one.

Also it is NOT a life sentence to a chair.  Get her a ReWalk and she'll be back on her feet, once she stabilizes.
« Last Edit: 02 Apr 2013, 20:28 by mtmerrick »
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HappyHavoc

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Man school is crazy but fun at the same time.
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Live Love and Headbang!!

Patrick

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I much prefer my online life to my IRL one.

I'll be honest, a lot of times I feel the same way, and then I remember I haven't really decided that yet. I can have both, though.
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Zingoleb

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all of my lives suck to be honest

at what point do i become a rock star fucking hell
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Akima

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Which is really pretty fucked up, when you think about it.
I just feel inadequate that I can't really do anything to help.
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BeoPuppy

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I hope everything works out for the best for you and your daughter. Best of luck.
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My Art.
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Welu

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Akima echoed my feelings.

It's good to have a support network of any kind.

Zingoleb

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Also I feel like an asshole 'cause I'm ignoring you Carl but I don't relaly know what to say other that I'm sorry.
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Boiled Dove

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Damn Carl-E. I thought I knew frustration when it took about 6 months for them to find why my 17 year old was having seizures (small brain tumor) but that is nothing compared to what you and your family have been going through.

As a fellow parent I really feel for you, I've never experienced a feeling of helplessness like I did when they were unable to figure out what was going on and I'm sure you have been through the same thing, even worse. Yep, everything else seems like petty bullshit when confronted with such a situation, it does change your entire perspective.


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lepetitfromage

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 :cry:

*hug*

Thinking about you and your family and hoping for the best. I don't know how much it helps, but Nick had brain surgery when he was about her age and has been living with a shunt in his head for 10+ years. I'm so grateful for that little device...it's keeping him alive. I'm sure that doesn't make the idea of brain surgery any less terrifying but I guess my point was that while a shunt is invasive, if she needs it and it helps her, it will be worth it's weight in gold.
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Carl-E

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We're actually pretty familiar with shunts...

Her boyfriend, who she met at Children's, was suffering from the same problem.  He's had a shunt for three years, although due to some serious incompetencey, it's needed to be redone twice.  However, he's in pretty good shape, now. 

Re: Rewalker - I no longer have insurance, and medicare won't cover that.  They don't even cover a decent power chair (I'm not talking hoverrounds, here - we test drove one that tilts and elevates, letting her transfer in and out of bed and get things from the cupboards... we're looking at some outside funding fromo OVR for that). 

We're trying to figure out what's up with the eyes.  Her pressure measures twice normal - about 39 - 40 lbs, normal's 17 - 22.  At that pressure, she should be blind from the optic nerve being crushed. 

After the opthomologist, she's coming home while we wait for the other test results and the medication to work. 


I need to clean up a bit...
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Loki

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I. Um. Damn man.

I wish you the best.
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Patrick

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at what point do i become a rock star fucking hell

My fuckin thoughts to a T, bud.
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Zingoleb

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i think you're a little further along than i am, albaniaboy.
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Zingoleb

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alboynia
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Zingoleb

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actually let's just stick with albaniaboy
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Carl-E

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Home.  Her eyesight's still mysteriously OK.  She tires easily.  The pressure medicine went in with the rest of the three hour course of medicine tonight. 

10 PM  - calcium, stomach pills, vicodin, birth control
12 midnight - amatryptalin, synthroid, vitamin C (all need to be away from the calcium)
1 AM - trazodone, benadryl, the new stuff (trazodone needs food, food needs kept away from synthroid), and hook up the formula pump to her feeding tube. 

That's my evening, every evening.  All the pills need ground, mixed with water into a slurry and injected into the feeding tube, she's not able to swallow most pills. 

Then I walk the dogs, and try to sleep. 

Goodnight. 
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mtmerrick

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 :psyduck: da hell are the birth control pills for?
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Carl-E

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Her thyroid was removed.  That's the master of all hormones.  The BC regulates her periods because her other hormones are so out of whack. 


Seriously, you do not want to be around a teenage girl going on the third week of her period...
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mtmerrick

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Jesus I feel sorry for your life man  :psyduck:
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Carl-E

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NO.     :x


You do not get that option. 


I am blessed in ways you'll never know.  My life is what it is; there are unfortunate aspects of it, but I'm in excellent health for a man my age, and have a loving family. 



And I sing.  And whistle.  And can still dance. 
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Papersatan

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And she probably doesn't want to have 3 week periods...

Seriously, I think period regulation is almost as common a use of BC as pregnancy prevention.

Also, I believe Carl said she had a boyfriend...  She may be in bad place a the moment, but given his descriptions of where she was prior to this flare up of problems, I would not assume she was not interested or capable of the things other girls her age do with their boyfriends...

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[12:07] ackblom12: hi again honey
[12:08] ackblom12: I'm tired of lookin at that ugly little face

Carl-E

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Yeah, she's promised to make me a grampa someday. 

Of course, she also has saddle anethesia - can't feel a thing from waist to mid thigh. 


Gonna make things interesting for them...
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Loki

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If you are easily disturbed by suggestions from strangers on the Internet about how your daughter can have better sex, don't read the spoiler.

(click to show/hide)
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mtmerrick

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Well in that case she has a better social life than I do.

How the fuck did that happen.  :psyduck:

I'm glad you're handling everything as well as you are though. Color me impressed.

I hope for the best for both of you, knowing full well I would break in that sort of environment . (better?)
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Carl-E

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You do what you have to do.  Things build up, and once in a while you look back and say, "How the fuck did I get here?", but you're already there, so... there you are. 
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Patrick

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i think you're a little further along than i am, albaniaboy.

I can hardly say the Albania thing's really such a part of why I play music. I choose to block the majority of the singing-on-live-television experience out of my memory as best I can. I have never felt so completely at the mercy of total strangers before or since, and I never intend to feel that way again. It's awful, completely fucking horrible, I'd sincerely rather be dead than ever feel that helpless again. I need to be in charge of my own fate, and if I'm not, I fucking melt down. I had a lot of great times but I have to make a very distinct partition for the different kinds of memories from that experience.

It'll be 4 years in July since my time on the show ended, and I still haven't decided whether or not the experience amounted to a net gain or loss. There's so many factors of both ends of the spectrum. Whatever I decide about the rest of it, I certainly learned a lot about myself.
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BeoPuppy

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Auntie has been cremated. Done and dusted, so to speak. The usual suspects were completely shattered and broken. You know, these types of get-togethers ... never fun. Avoid, would not cremate again.

I might be irreverent but it's a long day, with loads of travelling and sadness and crying.
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My Art.
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i think you're a little further along than i am, albaniaboy.

I can hardly say the Albania thing's really such a part of why I play music. I choose to block the majority of the singing-on-live-television experience out of my memory as best I can. I have never felt so completely at the mercy of total strangers before or since, and I never intend to feel that way again. It's awful, completely fucking horrible, I'd sincerely rather be dead than ever feel that helpless again. I need to be in charge of my own fate, and if I'm not, I fucking melt down. I had a lot of great times but I have to make a very distinct partition for the different kinds of memories from that experience.

It'll be 4 years in July since my time on the show ended, and I still haven't decided whether or not the experience amounted to a net gain or loss. There's so many factors of both ends of the spectrum. Whatever I decide about the rest of it, I certainly learned a lot about myself.

I either wasn't listening to you properly in '09 or I have no idea what the fuck you are talking about.
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Valdís

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I might be irreverent but it's a long day, with loads of travelling and sadness and crying.

Sorry to hear that, Beo.. So many hugs for this thread.

I should make a Blót dedicated to her well-being and fortune.

@Carl: Much love. Windy as all get-out though, so had no hope of keeping the candles lit for long (It also messed up the flowers). They were burning when I was speaking, at least. The bowl had a low-lying burn on top of the fish I chose for sacrifice (Marine Biology interest). Can't really see it well. Put some Dry-moss on it to help the fire stay alive.

(click to show/hide)

(click to show/hide)

Feel free to take it as just another hollow platitude, but, like I said in the private message: Infinity hugs. :-)
« Last Edit: 04 Apr 2013, 11:02 by Valdís »
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Now the sayings of the High One are uttered in the hall
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Hail, thou who hast spoken! Hail, thou that knowest!
Hail, ye that have hearkened! Use, thou who hast learned!

mtmerrick

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That's an excellent service, and that's coming from an atheist. I would not mind having a funeral like that at all.
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Barmymoo

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mtmerrick, I might have misunderstood your post, but you might have misunderstood Valdis's - I believe the photos were of the Blót (can you tell us more about that?) which was for Carl's daughter, not for Beo's aunt's funeral.
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There's this really handy "other thing" I'm going to write as a footnote to my abstract that I can probably explore these issues in. I think I'll call it my "dissertation."

Welu

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The Blót looks interesting.

~ ~

Dear Blogothread,

A person in between the level of acquaintance/friend has been messaging me and asking me to look at a dress she bought to make sure it's okay for my birthday party and saying she wants to order some stuff for it. This is because I said it might be fun to have a fancy dress/masquerade type theme under the logic most people have some formal thing in their closet they never get to wear. Although her sort of pushiness makes me want to just have a movie night. Also some of my friends don't have formal things or things that are nice but are worried aren't nice enough.
Last year I had a Batman themed costume party, even convinced people to go into town dressed up. It was great fun but it seems I set up a standard since the rest of parties for the year were dress-up or some other theme.

I just want people to dress up in pretty things and drink alcohol if they desire and have fun.  :meh:

mtmerrick

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mtmerrick, I might have misunderstood your post, but you might have misunderstood Valdis's - I believe the photos were of the Blót (can you tell us more about that?) which was for Carl's daughter, not for Beo's aunt's funeral.
well I did misinterpret that pretty bad then. >_< my fail. I blame wikipedia. 

Seriously though, the blót looks awesome.
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Valdís

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I believe the photos were of the Blót (can you tell us more about that?) which was for Carl's daughter, not for Beo's aunt's funeral.

Yeah, it was for her. Wrote the post after getting back from it, naturally. Set things up, lit the candles and sacrifice. Said my words. After giving blood to the flame I poured out half a bottle of wheat-beer. Then I had a snack and drank the rest. :wink:

I also encountered a deer on my way there. She ran off right quick.

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Now the sayings of the High One are uttered in the hall
for the weal of men, for the woe of Jötuns,
Hail, thou who hast spoken! Hail, thou that knowest!
Hail, ye that have hearkened! Use, thou who hast learned!

Carl-E

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Feel free to take it as just another hollow platitude, but, like I said in the private message: Infinity hugs. :-)


Wow.  Thank you, Valdis.  That was really very moving.  I had no idea what was involved.  I'll show her. 


Oh, and I know you didn't know this, but she's wanted to be a marine biologist since she knew what the words meant...

I also encountered a deer on my way there. She ran off right quick.

Probably the smell of blood and burning fish...

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Tregul the Bandage-Kitty says hi!

Hi, Tregul! 
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Valdís

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Wow.  Thank you, Valdis.  That was really very moving.  I had no idea what was involved.  I'll show her.

Oh, and I know you didn't know this, but she's wanted to be a marine biologist since she knew what the words meant...

Aw, thank you too. The place with "[her]/[henne]" really said her name. <3

Hopefully she won't be mad at me for burning a fish! :lol:

Probably the smell of blood and burning fish...

Of course, staples of the Deer diet! :psyduck:
« Last Edit: 04 Apr 2013, 19:01 by Valdís »
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Now the sayings of the High One are uttered in the hall
for the weal of men, for the woe of Jötuns,
Hail, thou who hast spoken! Hail, thou that knowest!
Hail, ye that have hearkened! Use, thou who hast learned!

mtmerrick

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ever since i learned of the Horrible Chinese River Deer i have not been able to look at any type of deer/deer-like-thing the same.
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Valdís

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"The water deer (Hydropotes inermis), also known as the vampire deer, is a small deer superficially more similar to a musk deer than a true deer. Despite its lack of antlers and certain other anatomical anomalies—including a pair of prominent tusks (downward-pointing canine teeth), it is classified as a cervid."



WHAT THE

I WAS JOKING

(They're still herbivores, though. Those are for fights, they don't grow antlers. They're still adowabul!)
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Now the sayings of the High One are uttered in the hall
for the weal of men, for the woe of Jötuns,
Hail, thou who hast spoken! Hail, thou that knowest!
Hail, ye that have hearkened! Use, thou who hast learned!

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Random thought based on Deer: On the morning of the 28th, I was driving home from work via the "alternate" route - a two-lane rural highway that is essentially a country road. I reach this one point, near where you turn to go to the airport, and that's when I see them.

16 deer, all bounding out of the woods on the one side, leaping over a fence and running fast and furious for the other side - where another fence and a smaller patch of woods are.

The first group was about a dozen or so, and were over the road so fast I didn't realize I had come to a complete stop. The second group I had to wait to cross in front of me.

It was the weirdest thing I'd ever seen when it came to deer and roads.
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mtmerrick

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Will you ever look at bambi the same way now though,  Valdís?
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