Archive for the ‘Max’s Epilepsy’ Category

Snow is level 51 as of today

Wednesday, October 28th, 2009

And I am so loving playing her.  Tonight we did about four major bosses and two not quite as major bosses.  I am second highest level in the faction and man it is a blast being able to help everyone else.  I am soooooo loving it.

I started a second character just to have someone easier to level for off days.  I resurrected Eyss Mune for that job and shes level 18 at present.  I bought her a rare pet with Snow so I could try leveling up a rare.  (It’s a frogling.)   Its been really fun and my faction mates have all been leveling up secondary characters too.  They are all such great people…. I am enjoying spending time with them more than anything else I’ve done in probably years.

In other news, not so fun, Max attacked me yesterday and punched my chest so hard my left side hurt the rest of the night. It was awful.  He was also terrible at his physical therapist Monday and spitting on the bus this afternoon….  I honestly don’t know how much longer we can deal with this.  His case manager is looking into finding us some help now that Maxim has quit.  (They say they aren’t trained to handle violent cases.)  I’m not sure what the outcome of all of that will be and honestly right now I’m just trying to make it day to day…

Our dishwasher is giving us trouble, as if all that other stuff wasn’t bad enough.  So this evening, I hand washed all the dishes.  It was a pain in the butt but the dishes are cleaner than they’ve been in a long time.  We have to get the drain cleaned or something and I think Cliff is going to call one of his co-workers’ dads who’s a plumber to give us an estimate, or at the very least explain how to fix it.  That should be fun.  :P

By the way, Nathan’s birthday came and I sent him an ecard and an email!!!!  I hope he got them!!!!  I know he’s really busy these days.

I’ve got screenshots and stuff but I’ll post all that later….  Gotta go to bed for now….  ‘Night world.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, general complaining, just stuff, life stuff |

Yes, it IS all about depression….

Thursday, October 22nd, 2009

…..every thing in my life pretty much, except for a certain virtual world.  I have had so much fun in there giving things to the people I like and for now really enjoying their company.  I wish I could do more.  It has really been fun.  But the money has run out now…  I bought clothes for three people and a pet for one person and gave materials and needed things to others.  And one gets Caenis as a girlfriend, at least for a little while each day.  (And he treats her special as a girlfriend too.  :)  )  And I get to kill stuff and watch sun rises and stand in the rain and fly and all kinds of cool impossible things….  I wish it was real.  So badly.  But the friends are real and I feel so at home with these people.  They make me smile and laugh every day.  :)

Well, anyway, I need to get to bed.  I just don’t want to dwell on the bad stuff before I lay down my head. I’d like to concentrate on the good.  Right now the best of the good comes from that game…  :)  My sad and lonely and depressed self loves the lighthearted happiness that comes from those folks in there…  And one in particular brightens my day every time I see him, green hair and all.  :D

Goodnight…  :)

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, general complaining, just stuff, life stuff, pure weirdness |

Heh….

Wednesday, October 21st, 2009

Another one down?

Yeah, Max’s worker is a no show this afternoon.  Not really surprisingly, Max is 100 times easier to manage today.  So of course I’ve got this song going through my head:

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, general complaining, just stuff, life stuff |

Just for the record,

Tuesday, October 20th, 2009

I hate my life.

A kid on Max’s bus leaned over and spoke to me this morning telling me Max spits on all of them everyday.  So what do I say to that?  “Try living here and getting kicked and punched and squeezed by him everyday”?

I know the old seizure meds have yet to leave his system, and maybe that’s all this is, but therapy went horribly and the ride home from therapy, worse.

The only good things right now?  The woman I talk to on my game who has an autistic son says she considers me her best friend.  :D  That’s pretty cool.  My character also has a young man in love with her (just in the game – he’s seriously just a teen but he knows I’m an old lady with an husband and kids and he says we’re just role playing characters) so I do get virtual hugs when I need them and that’s nice.

In real life though, I have yet to spend the Amazon $$$ from Nathan because I can’t decide what item I want/need more.  I’ll figure it out.  The rest of the money I put on my game.  I’m sorry, but right now, the game is what keeps me going.  Real life is just too damned depressing.  I know it’s a phase and that eventually I’ll get tired of it and quit, but right now I really need this break from reality.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, games I like... okay Myst., general complaining, just stuff, life stuff |

wow

Friday, October 16th, 2009

It’s been a while since I’ve written anything… A whole week!  Unusual for me.  I’m finding myself wanting to spend every waking moment in Perfect World with my friends.  Ha, yes, I have friends.  Shocking isn’t it?  I enjoy being in there and playing with them more than any of them will ever know.  :)

In real world news, Max attacked his teacher the other day, we’ve started him on his new seizure meds, he grabbed his new worker’s steering wheel as they were crossing the bridge to come back home and now the guy is scared to drive him anywhere, the list goes on from there.  Pick a problem.  His teacher called me while the worker was here yesterday and I have to say it took everything in me not to cry.  She said so many nice things and gave me such praise… Everyone seems to think this is so heroic and brave to do this, raising this child, but really I feel I have no choice.  I feel very trapped and more often than not, very alone.  It is heart breaking to see him destroy everything that we own and hurt us.  She said I deserved a break and someone should send me on a cruise or something.  The reality is, I want to escape inside myself.  I’d rather be living in my fantasy world than the real one and that’s why I play the game so much every day.  She’s talking about signing him up for summer camp, but I am so afraid of that… It’s so much easier to hide in my little imaginary world than it is to do things I have such little real interest in doing like cruises and such.  Anyway, I don’t want to get worked up over all of that so close to my last remaining chance to get peaceful rest until Monday.  But I have to admit, I’m struggling hard with the need and desire to jump back into the game.

Speaking of the game and real life, try as I might, I can’t seem to keep the two completely separate.  One of my game friends now knows my online nickname and my band name and my website, purely by accident.  Oh well…  I did ask him to keep it between us.  I really don’t want that world crossing over into this one.   I want to go there in the game world to enjoy myself and be happy and have fun.  This real world is a constant chore and so damned sad most of the time.  I do talk to one of the group privately about some real life stuff, because she also deals with much of the same stuff as I do, but even with her I try not to talk about it too much.  I really want this game to be my other, freer, life.  An escape.

Anyway, I gotta go get my nap…. Time is rapidly running out.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, just stuff, life stuff |

Results from MRI?

Friday, October 9th, 2009

Nothing’s wrong.  He’s got a perfect brain.  Ta-da!  Results from DNA and blood work aren’t back yet.  All in all everything went very well regarding the MRI day.   And, Max did well at the neurologist’s office this morning, though there was a very long wait and by the time we got done Max (and Cliff) was bouncing off the walls.  By the time we got home I had totally had enough.  Now I am worn out and my head hurts and I just really want to go into Perfect World and spend the rest of the day flying on my manta.  I think I might even switch to the laptop because typing on here is just too uncomfortable.  I am going to ask everyone to postpone the cake until tomorrow since Marjorie has to work until 8pm tonight…

PS- I forgot to mention, Happy Birthday to me.

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, just stuff, life stuff, pure weirdness |

If I die tonight…

Monday, October 5th, 2009

…it’s because Max threw a toy and hit me on the head.  It’s still hurting and it’s been about 30 minutes since it happened.  :(  He is so aggressive right now.  :(

“Neko Mimi Mode” is going through my head….

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, general complaining, just stuff, life stuff, pure weirdness |

Well, while I am really super freaked out about tomorrow,

Monday, October 5th, 2009

with the MRI actually happening and all, I am also really over excited and flustered at what happened on my video game today, so, I’m kind of wound up.  :P

All my screenshots are on the lappy though so I’ll have to wait to post them, but damn, Caenis Snow had an absolute blast this morning doing some things I have never done before in that game.  And they called her “Snow” which for personal reasons of where the name originated, tickled me pink.  :D

This is the greatest guild in the world.  I’m swearing by this.  :D

Anyway, I felt like a dunce most of the way through because it was all happening so fast, but in the end everyone was so nice and amazing to me that I’m just glowing at the moment.  :D

Unfortunately, duty has reared it’s ugly head and I must face not only evening chores and cooking dinner but also the reality of the MRI and what we are facing tomorrow.  I’ll get a short while to play tonight and then we’re off to adventure and fear in the morning.  Wish us luck.  :(

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, Me and MMORPGs, games I like... okay Myst., just stuff, life stuff, pure weirdness |

Okay, I have to take back what I said the other day….

Monday, September 21st, 2009

….about Perfect World.  Perfect World still satisfies, at least in the eye candy department.  Meet my new character, Raven Snow.  He’s one of two gentlemen I invented who are actually brothers.  The younger brother is Caius Snow.   I know the Snow surname is silly, but when you’re on there with words that I don’t use here *ahem* used “creatively” in names, well, you get the idea.  :P   I did see a Yuuji today though.  That was cool.  Most of the time people want “Lone Wolf” or “Darth Vader” some other predictable name that a million other people want, so they put xx’s in front or behind the name or add underscores or whatever to force the name.  I actually saw a “Lone_VVolf”.  I guess in a way that’s kind of creative.  For me though, I just invent a last name and use that.  (Yes, you do get a last name later, but I’ll probably use that to write some title or other for these guys.)  I mean I was determined to use Caius first, and of course it’s been used, so that’s where Snow came in.  Snow and Caius are both the names of two characters I wrote about recently on my fiction blog.  The Caius story was finished, but I haven’t finished Snow’s story yet.   Raven was kind of invented on the spot.  I wanted the name to mean the exact opposite of a guy with white hair.  Why not Raven?  And, with the last name Snow you’ve confused anyone who is as dull as me and thinks about names too hard.

Anyway, here he is. I’ll post Caius later.

ravensnow1

ravensnow2

I’ve never played an online game as a guy before.  It’s kinda fun!  It made the game new to me again.  In all fairness, I did try to make a male character I liked in EQ2 both recently and in the past, but it just didn’t work.  Both games have lots of creation features that I like, but PW just makes the darned best looking people!  It’s like walking around in an anime!

Now I want to go back in there and see if I can make a big eyed cat girl and call her “Neko Mimi“.  (Or “Neko Mimi Moon”, since I’m sure a thousand other players all tried the same name.)

IN OTHER MORE IMPORTANT NEWS, Max’s MRI was delayed until October 6th.  They decided that it’s too risky to have Max put under when he’s been so congested.  They are going to try and give him plenty of time to get better first.  Whew.  I was so worried about it all when Max got so sick on Friday.

Now, back to more PW fun before bedtime.   :D

__________________________________________________

FOR FUN, before I laid down my weary head, here’s some cool screenshots of Raven and Caius and my failed attemped at Neko Mimi (unfortunately now named “Bloo Moon”)….

(If you care, you can click each image to see the full size version.)

First, Raven….

raven1 raven2

Then Caius. (The younger of the two, obviously.)  I tried really hard to make sure there is a strong family resemblance.  I hope it worked.  :P

caius1 caius2

Action shots of Caius….  One taken during a battle.  The brightly colored thing you see is his genie.  I’m not really sure why but Raven’s genie doesn’t seem to get in the way much, and Caius’ is always in his face.

caiussnow1 caiussnowwithgenie

And finally, my failed attempt at recreating an anime “big eyed” girl:

bloomoon

I don’t know, maybe it’s not too bad….

Oh!  One more thing….  I SWEAR I wasn’t trying to recreate Gwendal when I made Caius.  Really!  :D

gwendal1 gwendal2

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, games I like... okay Myst., just stuff, life stuff |

My eyes are bothering me again….

Sunday, September 20th, 2009

I think it’s all about stress this time.  Cliff is hurting from his re-injury and Max is very sick with a bad cold and the stupid MRI is looming just two days ahead on the horizon and irony has reared it’s ugly head and said, “uh, guys?  I don’t think I’m going to allow you to do this right now” because his cold and cough will keep them from being able to use the anesthesia.  Let me hear a resounding JOY!!!! Ugh.  And Ian just walked in the room and he sounds terrible too.  Plus Max’s teacher called yesterday to tell me she’s sick too.  This thing might get all of us before it leaves the house.   :X

Well, I have been faithful to my goals and following the 1600 calorie thing very carefully for ten days, trying hard not to go over 1600.  I have gone over a bit, but I’m still learning…  The highest was 1848 and that’s because I had to eat a frozen breaded precooked chicken pattie for lunch one day when we were out of everything, but the rest of the time I stayed below 1700 and that’s pretty amazing for someone who was eating well over 3000 a day before without even knowing it.   For one thing, I have learned that I really like baby carrots but don’t like regular carrots.  (I know they are cut from the same thing, but they must do some kind of treatment to the baby carrots to make them sweeter.)   I long for a pink grapefruit with honey in the morning, but they’re so expensive…  Honey too.  Ouch.  I miss ketchup very much, so much that I am considering trying carrot sticks with ketchup.  Lemon juice, while easier and more convenient and cheaper than real lemons isn’t as much fun as the real thing….  While I like my 2 oz of  rotini cooked in a half cup of chicken stock, I prefer 2 of the bbq chicken tenders that Cliff makes and according to the nutrition grade thing, they are far better for me than the rotini is.   Unfortunately, they too are pretty darned expensive.  I have learned that I love lettuce.  Very much.  I wish we had more money so I could try some other veggies in my salad, but I don’t really know much about salads or what would be good as I prefer kind of bland tasteless veggies to flavorful ones.   I am also a big fan of broccoli and cauliflower and would love to have some, but again, money is a serious issue, and all fresh fruits and veggies are villanously expensive.  (I just invented that word.  :D)  It’s funny how they demand us fat people eat right and lose weight but make the best foods horribly expensive and the bad foods cheap.  I also really love rice and potatoes and all that, but I don’t have any plain white rice at the moment, and Cliff bought two of those really expensive microwave ready potatoes instead of just a bag of potatoes, so now I am waiting for the right meal to eat them instead of just eating them with lunch like I had intended.

And speaking of potatoes, I have to figure out what to put on them that isn’t some sort of weird chemical fake butter.  I like butter on my potatoes.  You will find I am not a fan of sauces or creams or dressings, so I need to find something that suits my palate so I will not be put off of potatoes.  I have two great saltless/no sodium seasonings that I like, I just need to find something like butter to put on them.  Or maybe I should simply limit my butter use to a very small portion.  In any case, I will do some research to try and solve that soon.

I want to start walking again too.  I did so well that whole year before, but I wasn’t eating right.  This time, I am eating right and I want to pick back up my 3 miles a day to the beach and back again like I did before.  My shoes are ruined, though serviceable for now, and I still have some good walking pants, so I guess I need to start that up immediately.  I will probably start that back up after Tuesday.

Cliff and I talked about the future the other day as I mentioned yesterday, and I brought up that someday I will have to go back to work again.  He kept saying that I can’t do that with Max home and blah, blah, blah, but I know that we can’t depend on child support and it’s about to run out anyway in just one more year from Ian’s birthday this year, so we will lose that $156 a month permanently then.  Plus, Max’s money will start going to Max directly once he turns 18, so we’ve got only about seven more years of that.  I am about to be 42 on October 9th.  That means I’ll be close to 50 before I have to step back into the work force again.  What the heck am I going to be able to do at that point?  Walmart greeter?  Stock person?  Price gun wielder?  I hate handling money and I’m not a chef or a baker so, eh…  There was always the dream that my music would turn into something, or my fiction would become a great thing, or my artwork would make magic happen.  Instead I’ll probably be tagging clothing at Walmart or stocking shelves at the grocery store.  I wish I had gone to art school.  :(  I wonder what I would have been doing today if I had….  *sigh*

I’ve thought about writing a book about our life with Max’s autism, but I just can’t get into it.  It’s enough to just be living it.

Ah, well, depressing post again.  Sorry world.  I just hope I can keep from catching the boys’ colds!

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Posted in Max's Autism, Max's Epilepsy, Max's Prader-Willi Syndrome, general complaining, just stuff, life stuff |
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