Sunday, July 29, 2012

Hey Strangers

Wow it's been awhile.

I'm gonna type here while I wait for Skyrim to load various locations. Or when I just get totally bored with it, because let's face it Skyrim is not exactly a challenging or original game and the pace is sooooo slow. But I am very sick with another summer sinus and upper respiratory system infection and I am refusing to use antibiotics this time if I can in any way avoid them so I am spending a lot of time on the couch with cups of tea, bowls of soup, glasses of water and piles of vitamins and my acupuncturist's prescriptions of Chinese herbal medications (which are generally far more effective than anything Western medicine has done for me lately). And slow paced games that don't require much attention or focus are great for this degree of illness, it doesn't matter if I drop my controller to hack up a bunch of disturbing green goo, nothing happens in the game anyway.

"They" found out what's wrong with me back in February a couple of weeks after Zak and I came home  to LA. With my letter from the genetic counsellor in Montreal (who also told me to see a geneticist in LA if I could afford to because the wait list in Montreal was too long) telling various specialists like rheumatologists and geneticists to evaluate me for Ehlers Danlos Syndrome I was able to be seen quickly at Cedars Sinai and received my diagnosis from both a rheumatologist and a team of geneticists of Classical and Hypermobile Types Ehlers Danlos Syndrome. So my time in Montreal wasn't entirely wasted only nearly entirely wasted. Since then I've been doing aqua physical therapy twice a week (except for when I have infections like the one I've got now and the  times I've developed costochondritis). I have a wheelchair that was amazingly generously donated to me and I have to wear wrist, knee, ankle and a back brace/posture support brace whenever I leave the apartment and sometimes even while at home. That's both knees, ankles, etc. I can go into details about the nature of my condition in a later blog but suffice it to say for now that it explains everything that has gone wrong with my body since I was a toddler and I've learnt a whole lot about what exactly has been happening to me my whole life and why I kept getting more and more ill and less and less capable of functioning like everyone else around me.

It has musculoskeletal, neurological, cardiovascular, gastrointestinal and immunological effects and symptoms along with a lot of common co-occurring conditions like Postural Orthostatic Tachycardia, Firbomyalgia, Myofascial Pain Syndrome (all of which I have), Chiari Malformation, even dental abnormalities, it also can affect the way the body absorbs and processes nutrition and medication.

It's genetic and I was born with Ehlers Danlos Syndrome, I most likely inherited it from my dad but he is still waiting to see a doctor about his condition up in Canada.

After a few months of the physical therapy though I am getting stronger and have noticed that my pain isn't quite as bad on a daily basis as it was six months ago. I still have too many bad days but there is some improvement so obviously getting a diagnosis has helped tremendously. I now also know what to be concerned about and what to simply accept as normal for me and can make the appropriate adjustments to my lifestyle.

This blog is pretty much a practice exercise since it's been so very long since I've written anything and I am (slowly) working on something fun with a bunch of other gamer girls I know. One of them is Apocalyptic Kitten aka Izzy or Isabelle Lillium. She's got Ehlers Danlos Syndrome too and is coming to visit Zak and I in a week and a half. Yay! She and I seem to get along exceptionally well and have a lot in common so I think we're gonna have a whole lot of fun.

This is my tumblr:  where I've been posting a lot in the past year. It was so much easier than blogger while I was bed ridden (mostly) during my months in Montreal to post photos there, and in the months I've been back in LA automatically updated from my instagram.

We've (Zak and I) have been playing a lot of games using Google +'s video chat feature with people all over the world and so that's been lots of fun and we've played some really great games. We're getting ready for a Star Wars campaign next week, I am starting a Changeling Victorian Lost game with some of the previously mentioned girls in about a week as well, and we got into a Burning Wheel campaign (only we've been told we're not playing it "right" of course, cue all the eye rolling) among others. There are some really fantastic creative people GMing games on G+ so if you wanna play PnP RPGs but can't find a local group I recommend getting on there.

Our local gaming group is back together since Frankie moved back to LA from NYC and is now my and Zak's roommate, though Satine is still super busy running drawing classes and D&D games over at Meltdown Comics in Hollywood, so we don't get her in too often anymore.

Drax the Destroyer my Dandie Dinmont terrier mutt is still kicking and going strong, at 14 years old the vet said he could live four or five more years! She could be wrong but it makes me happy nonetheless.

I went to San Diego Comic Con for the first time ever and I'm not sure I'd ever go back. At sitting height--because I have to use my wheelchair--with the crowds it's impossible to really see anything or get near booths and no one pays any attention to where they are walking so all my attention was focused on not running over strangers feet with my 200 lbs motorized chair. A few feet got run over accidentally despite my best efforts and I really don't feel bad because those were the rudest convention attendees who thought, even though I even tried to grab a couple of them to keep them from getting hurt, having legs that work means they get to walk into/jump in front of me to get or see whatever they wanted to no matter that these heavy scooters and motorized chairs don't really break that well even on the slowest speed. The lack of handicap accessible taxi's and transportation services was also a let down.

The best part of Comic Con was just hanging out with Zak's pals from DC comics and meeting a lot of the people that work there.

Ah porn.

I have not retired from performing or modeling and I am slowly building up to launch a clips4sale store however my health must be my priority so the days I work are few and far between. I still cam sometimes, not too often yet, hoping to be able to do it more often as I get healthier, and I'm now over here on Same goes for modeling. Working up to being able to do it more often again.

Kimberly Kane is now directing for Vivid which means whenever we hang out we hear about all the great and crazy ideas for movies everyone in our social circle has swimming around in their brains. Fun.

Alright. So practice/catch up blog is done for now. I'll be back here more often now.


Pavel Berlin said...

I just really-really want to wish you all the best. "We shall overcome" as they used to say back then. :)

Anonymous said...

if you want to try another comic-con, the one in Calgary at the end of April is really good and not quite as large as San Diego.

ErrandW said...

I totally get what you're talking about with Skyrim. I appreciate the fact that every book is readable but I'm just not that into reading every single one of them.

I was into the first Dragon Age, I'm sure you've played it but it's got one of the best replay value of any game IMHO.

Keep feeling better!

spoonmanx said...

Good to know about you, I hope you get better. :)

Rich Goldstein said...

Good luck and good health.

Atarius said...

You rock that chair like nobody's business. I know it's likely an undo burden but one that hopefully makes getting a grasp on things easier. Glad to hear things improving for you.

Atarius said...

You rock that chair like nobody's business. I know it's likely a undo burden to have to use it, but one that helps more than it hinders. I'm glad to hear things are going in the right direction for you and your health; I'm also really impressed at how you don't seem to let it keep you down.

A beautiful inspiration for those traversing similar situations and even those that haven't.

TheBestSleep said...

I didn't see any comments so I just wanted to say that I think you're pretty awesome. I lost a lot in the past couple years including my little sister to cancer. I know you hurt right now but you're too damn beautiful to let it get the best of you. Hope you get better.

韩昆 said...

Good luck pretty girl.May your god bless you.

Stefanoce said...

May your god bless you.It's so great to hear your news.

Anonymous said...

I thought about you today when a group of your pics started showing in windows gadget slideshow. At some point last summer you blocked me on twitter - cause, well, I was stupid and obsessed a bit with you. I had put together a vid of you & sarah set to 'she wants revenge' music (a slideshow to tunes basically) ... and started 'blasting' it out to twitter / tumblr ... and adding your twitter so you'd see it (you had just moved up to Canada as I recall). I want to say, first, that I apologize for my 'crazies' ... when i learned of your illness I just wanted to reach out somehow... so I made the vid. I'm truly not a stalker or anything like that. Just wanted to say 'hey world ... here's a brave, beautiful girl going thru some shit ... take a moment out of your meaningless lives and recognize... mmk?' or something. I know you and Zak are soul buds and all that... that's more than cool with me. Just wanted to let you know I'm not someone to be concerned about - and if you wanted to unblock me that would be cool. No biggie either way.

That pic of you in the wheel chair (this post)... well, it teared me up. Just saying. At least you now know what the fuck is wrong with your body, huh? It sounds like it's not something that's curable ... only treatable. Hopefully it can be 'tamed' or something so it's not too damn hard on you.

Anyway, just wanted to say these few things ... and wish you well. You deserve better than this, I do know that much! Take care girl. You will always be The Brave Tattoo'd One to me. (God, that sounds dumb, lol).

Joel (@ZenShadow)

Joel Overbey said...

damn, I'd love to Google+ Chat into your D&D games! If you want ... let me know! @ZenShadow on twitter. Joel Overbey on Google+ and on Gmail.

Sanjian said...

Hey Mandy,
Glad to hear things are getting better for you, sorry to hear ComicCon was a let down. Next year maybe try KantCon instead. ;)
What version of StarWars is your campaign going to be in? A friend of mine is running us through the old West End Games system right now.

Henry South said...

How have I just come across this blog and this person?! You have an avid reader in me. Peace & fucking from the uk.

Anonymous said...

Hi there, after a very long time, probably a year and a half or so, I thought of you tonight and visited your page again.
I only can say, this diagnosis sucks, and the health problems that go with it :-(

I really wish for you to get better and to find ways to deal with your condition.

Sorry if I did not find the right words, I am not a native speaker of English.

I am praying for you, Mandy.

Anonymous said...

Bonjour Mandy. Je suis étonné que personne n'ai commenté ton post pourtant émouvant et courageux alors que tu travailles dans un domaine ou l'apparence est tout. Prends bien soin de toi et merci de ta douceur (et de tes seins).

François de Paris.