Mar. 15th, 2016 05:37 am
pixie_elf: (Default)
It's been a long time since I've used this. I feel I've got a case of the olds now, looking back at this.

I'm still the same silly person in some ways... But in others, some things have happened that have made me a functionally different human being. I've grown up a fuck of a lot. My Mom nearly died and I became her caretaker for two years. When I say nearly died, that is a story in and of itself...

Anyone still use this thing?
pixie_elf: (Default)
I can't go into the why's or the full story right now. It was unexpected. It wasn't supposed to happen. 2 fucking doctors missed the problem he was having.

His obituary

I helped write it with Mom and Gina.

I can't go in to it, not because I don't want to, but because right now I can't get distraught. Earlier I started to cry and my throat closed up.

I made it through the services. I held up until we got home.

Then my body decided it didn't want to work properly anymore.

So yeah, I'll explain when everyone isn't fucking watching me and telling me to keep calm or trying to shove tranquilizers down my throat to keep me from crying. They're afraid I'm going to go into shock or when I start to cry too much I'll release too much histamine and it'll close my throat up again.

I can't afford to be human right now.


Sep. 7th, 2009 01:17 am
pixie_elf: (Default)
Not doing so good right now, seems my shunt is set too high.

So, Tuesday we'll find out if they'll be cutting me back open.

I'm hoping they won't, not for my sake, but because Papa NEEDS to have surgery on his carotid arteries asap... And he refuses to have it done until he knows I'm okay.

Got Dissidia for my birthday, and new webcam. Hasing fun. :3
pixie_elf: (Default)
I'm at least able to sit up for a while now.

Incisions hurt. Weening off of pain meds at this point.

Saw the kids today. Little Jose's first concern was "Are you better now?". He's such a sweetheart.

Marcos has a new word. Bunkass. His current insult is still 'Football face'. Bunkass just tends to be random. Chumpetta is still used by him however. He no longer uses 'Poopoo face' either, it's been completely replaced by Football face. I guess being a football face is somehow worse than having shit on your face? D:


Aug. 25th, 2009 01:42 am
pixie_elf: (Default)
Body has 2 weeks to begin working properly with shunt.

We're going to sit me up slowly, and if the problem is not resolved, it could be a few things.

1. The spinal catheter is leaking spinal fluid. This can be fixed by replacing it.
2. The valve needs a different setting.
3. This valve just isn't right for me and we need a different brand.

All of these problems result in my spine being cut open. Do not want.

On another note, Marcos current insult changed from "Poopoo face" to...

"Football face"


We're still trying to figure this one out.
pixie_elf: (Default)
...Only there are several problems, and we're not quite sure which it is yet.

First day of it being in? Great. Headache was gone. Both kids were pissed because they got there late and I had already been taken into surgery. XD Doctor did 3 incisions, he said it was difficult. One on my spine, one on my right side, and one on the right side of my stomach.

On the downside, Marcos was most likely traumatized. He rode in the elevator with Mom when they took me from surgery and she said he started screaming "NO MIMI NO!"
"What's wrong baby? Mimi's okay."
"No, she's asleep, she had surgery."
"No she not, she DEAD."
"Mimi is okay. She's just asleep from the medicine."

He wasn't exactly convinced, and was pretty unhappy until I came around. Mysti's first shunt, baby's first trauma. >_o; Thank God little Jose at least knew I wasn't dead. (He's seen me KO'd from surgery before XD )

I was released and went home and passed the fuck out... I think. Memory is pretty fuzzy.

Second day, hell began. I've been bedridden for the most part because sitting up causes godawful pain in my head. Neck started hurting really badly too, turning it hurts.

Also, as soon as I woke up, I noticed my left hand was numb. It's gotten somewhat better, but right now my legs aren't working like they should. It's like I try to make them do what I want but it doesn't feel right.

All of this could be for a few reasons.

1. It's overshunting, and getting rid of too much spinal fluid.
2. It's malfunctioning.

So, if it's overshunting, my body may catch up to it. Or it may need to be on a lower setting.

If it's malfunctioning, they're going to cut me open, rip the thing out, and put a new one in. If I'm lucky they'll only need to remove the valve, not the full tubing.

Incisions are mostly healed, had 2 ER trips, one due to the pain and to get fluids, the other because my surgeon's resident wanted to make sure I didn't need it removed right away. I didn't, so they gave me a shot of morphine then sent me home when the CT scan turned up clear.

Tomorrow I'll be finding out if I'm going to have more surgery (we're packing a bag in case he wants to hospitalize me and get it out/put a new one in.)

Going to try to pass back out now.
pixie_elf: (Default)
I've decided to go through with it. Really liked the doctor. Going with the lumbar shunt, rather than the one in my skull.

My other option was lumbar punctures every few weeks - few months, and diuretics for the rest of my life. I'm too old for this shit, over 250 times of having a needle shoved in my spine is more than enough.

He offered to put it in my skull but uh...the idea of something being put by my brain kind of sends me into a blind panic. :D
pixie_elf: (Default)
...Well not exactly.

So, the LP getting pulled off flat out was a miracle. They didn't know that they couldn't just use versed on me. Yes, my pressure was up.

They wound up using Propofol, Ketamine, and Versed in a mix together. This is the only time Versed has not turned me into a raging loon that tons of people had to hold down.

The reason they gave it to me was it was supposed to stop the 'crazy thoughts' that Ketamine causes.

It didn't quite work. Well, it did I guess but...okay.

Mom and Papa kissed me, wished me luck, and somehow, in my mind, this turned into them wishing me luck on my test to become an anesthesiologist. The male anesthesiologist was my teacher, the 2 females were my classmates, and I had been going there for YEARS.

While all of this was going on, of course, I was laying on a table, on my side. I couldn't exactly feel my body that well...

So I'm laying there, and I'm thinking that this is a really bizarre test to become an anesthesiologist... And I notice they are scrubbing my back...

....then I remember, I'M HAVING AN LP. FUUUUUUUUUUUUUUUUUCK!!!! I'm not becoming a doctor, I'm being WORKED ON BY THEM. XD

So yeah, took them at least 4 tries, Mom counted 7 holes along my spine. I remember telling them that my leg and back hurt when they hit a nerve root.

Then they asked me how I was and my response was....


I kinda went back into the haze, then they asked me how I was once the LP was over and I was trying to tell them I felt great....and that I didn't feel like vomiting anymore.

Somehow I didn't get it out right, and they wound up giving me more zofran.

Now for the weirdness.

So, I'm laying there in recovery and the radiologist is asking EVERYONE who walks by "Who was the guy who came from neurology and got the spinal fluid sample?"

"I don't know, I thought YOU knew who he was?!" Was the answer he got...from everyone. So now I'm wondering if there's some crazy who just walked in off of the streets and was like OM NOM SPINAL FLUID PLZ.

Having to look into getting a shunt again. Not too happy about that. But okay otherwise.


Jul. 9th, 2009 01:53 am
pixie_elf: (Default)
PTC / Intracranial hypertension is most likely back.

I'd really like to scream, sob, and throw things around. For some reason I can't do any of those things.

3 years of remission is more than I could have hoped for, really.

I just hate that it's come to an end.

I'll be having an LP soon. My head hurts, my back, and my neck. I'm also going to see about my GP doing as spinal series on me to make sure I haven't fractured or fucked my spine up somehow.

Oh well. Not like I can do much about it anyways. Bah.
pixie_elf: (Default)
First, some good ol' fashioned bishin'.

So, Marcos has learned the word bitch. And, unfortunately, he has decided that all superheroes = BISH.

He LOVES Batman. Batman = bish. I try to teach him Batman. It comes out as Batch. We all finally gave up on trying to teach him the actual names.

So, on his birthday, they were at payless. A female clerk was behind the desk, and she gave him 2 spidey stickers.

So of course, he starts to say "Bish! Bish!" and the lady is like "Oh, how cute, is he saying Bees?"

Tara: "Yeah...that's what he's saying." while she tries not to laugh.
Little Jose: "No, he's saying bitch. He says it all the time!"

....Yeeah, Brandi had to have a talk with him about how he couldn't tell people his little brother is saying bitch... XD But we all laughed pretty fucking hard.

On the 16th, saw pain management, they determined I was too ill for them to treat (not suprizing) and sent me on my way.

Saw my headache specialist on the 16th too, she gave me the okay to up the D.H.E. to a full dose. (Dihydroergotamine.) 1ml vial of this shit costs $40. Medicaid will only pay for $20 vials a month, but that's better than nothing. So I have 20 doses, per month, that if I have a really severe hit coming on, or need rest, I can use. Backup is oxygen.

I started a course of it, every 6-8 hours for 3 days, in hopes it would break the cluster headache cycle. It didn't, but it damn well gave me some rest.

It's so nice to know that at least there is SOMETHING that will take away these headaches for a good while.

On another note, things are still going well with the kids.

Marcos now calls me 'Mimi' 'cause he can't say Yumi, or Mysti. Little Jose is still intending to marry my Mom, and aunt Tara. He's also still going to be the wife.

He has also informed me I'm his daughter... XD The best part?

One day he walked into the kitchen with a bunch of toys, threw them up in the air, and Mom was like what are you DOING?

"I hope Aunt Gina can juggle lots of stuff at our wedding. I want her to dress up as a clown. But we'll have to ease Katelyn into it so she won't be scared."

We cracked the FUCK up but he was dead serious.

Ever since we told him that Nathaniel lived in Chicago, and a priceline commercial came on, he informs whoever is in the room "THAT'S WHERE NATHANIEL LIVES. THAT'S HIS HOTEL. AND HIS AIRPLANE. AND THAT MAN IS HIS FRIEND."

Marcos now starts to squeal 'NANIEL, NANIEL' even if no one else is in the room.
pixie_elf: (Default)
Finally got my oxygen. It is made of love. Medicaid is also paying for the oxygen.

I see my headache specialist the 16th. I am going to let them do a tap on me if they feel the need. Do I like having needles shoved in my spine while wide awake? Not particularly, but it isn't nearly as bad as my worst cluster.

I've stopped all but one medication that is known to cause headaches in some people... I couldn't stop my Celexa. Since I'm taking care of Marcos and Jose, I can't exactly risk becoming a basket case.

Aunt Bambam isn't doing too well right now, so, if Mom has to, Papa and I may be watching the boys alone.

Precious still has not been found by us. She's been sighted all fucking over port arthur. So we know she's alive.

Can't think of anything else to add right now. Too tired. x_x
pixie_elf: (Default)
I've gotten my occipital nerve injection, it was lidocaine.

It lasted for 2 hours.

Immidiately after, my clusters decided to visit and let me know how unhappy they were with me for trying to get rid of them. My left side of my face THROBBED for about 3 days.

So, we call my neurologist, let him know, he sets up with pain management who we were told would do another injection.

No. They fucking freaked out and refused to do ANYTHING. Fucking worthless. Grr. Claimed they would try to call and get SOMEONE to deliver oxygen, as they would not believe us about no place around here being willing to deliver it.

They also told us, while I was sobbing in the exam room, that my neurologist would be calling the headache specialist. They were fucking wrong. It turned out we wasted a WEEK waiting for them to call.

I see her on Monday.

Also, Precious went missing a Wensday and a half ago. Joy. We took her over to Brandi's to see the boys, she was tied in the backyard on her lead, got excited over something, broke the lead, Mom went outside 2 minutes later and started looking for her, according to a neighbor.

On top of THAT? Canadapharmacy can't get me my ketotifen.

So yeah, I'm living on epinephrine right now. And 10-15 zyrtec per day.

So, we've been passing out flyers DAILY of Precious, talking to Brandi's neighbors, and I've somehow started to regain faith in humanity due to this. So many people have been nice, and didn't even WANT the reward money we're offering for her. We've passed out 500 flyers since now and the day she went missing.

Aurora won't eat much at this point, she's been depressed since it happened, everyone else is pretty miserable. I'm probably the only one in the family NOT worrying that the dog is going hungry or is lonely.


My gut tells me we'll get her back. I know we will. Plenty of people have saw her, too, and she's following some people around at times... So not too terribly worried... I just miss her.
pixie_elf: (Default)
Okay so, today's fun...

Other than dealing with Ghosts and little Jose seeing them...

Little Jose likes to remove the outer part of corn dogs. So Mom said that it was a naked corn dog when she removed it.

The next time she did he informed her "I can see it's butt!"

"Silly, it doesn't HAVE a butt."

"Yes it does. DX"


Jan. 7th, 2009 09:19 pm
pixie_elf: (Default)
So we've started watching Jose and Marcos.

We've been trying to get Marcos to say 'Yumi' or 'Mysti'. He refuses.

Convo between him and Brandi.

Brandi: Marcos, who is that?
Marcos: MINE!
Brandi: Can you say Yumi? Is that Yumi?
Marcos: MINE!
Brandi: Can you say Mysti?
Marcos: MINE!!

Then, after that? He walked over and slapped me on the back before declaring "MINE!" again.

pixie_elf: (Default)
And responded to my message on MYSPAZ.

It's awkward, but we're talking through it some. I still don't feel comfortable enough to call him.

I asked him about family history, no response yet.

My brothers are now living with their mother.

She had better not fucking hit them again, or I will convince someone to take me over there on a really, really bad day. I will go hulk on her ass.

Then, Gina keeps worrying every time we can't get my stadol filled that I'm going to kill myself.

Yes, I know, I've said the headaches get that bad, and they do... But that's why I go to the fuckin' ER when one is! Usually if you're screaming bloody murder in the emergency room about killing yourself due to your head hurting, someone is going to do something to shut you the fuck up.

I really wish she wouldn't worry like that. :/ She was more worried because we had no car. I was like Gina, I would walk if I had to. I'd call a cab, or 911. I wouldn't just sit there knowing a bad one was on the way that made me liable to off myself during it.

I do have SOME reason to me in the early stages of a cluster. It's when I get to the point that I'm slamming my head into shit repeatively, not just every once in a while, that you need to worry.
pixie_elf: (Default)
Clickie, little bits of Mysti all over the place.

I finally had enough of that bullshit. Okay, yeah, I can agree, pain meds =/= good method for treating cluster headaches.

When it turns into what that did, someone needs to have a big spikey dildo shoved up their ass. I sent the original poster an apology in case I stepped over the line, but that was completely assholish. He's already got fucking suicide headaches, they've been there. Why the fuck is it so hard for them to go "Welcome, okay what you're doing isn't what we consider to be the best treatment, but it's your choice."

Instead of this horrible bullshit. He came for support. That's what the site is there for, everyone knows what the fuck everyone else is dealing with, how bad it is. And instead of simply being kind because of that, some are arrogant elitists.

So, when I see someone who is using pain medication, for whatever reason, I send them a PM. I let them know they're not alone, and that if they need support from someone who isn't going to condem them over it, I'm there. It helps me, too in a way. Because it's also someone else who knows my exact situation, has to put up with the same shit.

I expect to see someone try to rip in me tomorrow, but, honestly, I don't care. That was unnessesary cruelty and kicking someone when they're already down. What the fuck is wrong with these assholes? Do they think just because they have 'the worst pain known to man' that it makes them all-knowing? Or gives them an excuse to act this way?
pixie_elf: (Default)
So, Brandon got into trouble with the law for underage drinking. (He's 20 now.) Now, he and his friends would have gotten away with it, were it not for the fact their music was too loud.

So, the judge informs him his license is revoked for a month, he has to do community service, and, go to A.A.

The following Monday he went back to ask for a permit to drive to work, JUST to work.

The judge said "No, son, I stand by my decision."

"Okay, thanks!" And Brandon starts to walk off....

"Hey, hold on, I'm not done with you yet"

Brandon: "Well, I am! *walks out of court room."

We were like.. BRANDON, YOU COULD HAVE BEEN HELD IN CONTEMPT OF COURT. D: Then we all laughed our asses off at the fact he's an arrogant little fuck!

He's got balls, you gotta give him that.
pixie_elf: (Default)

I'll post pics later. Nathaniel is probably laughing at our 'snow'.

Mom went out and took pics of it and came back with lots of big clumps in her hair.

She was like "I has dandruff."

Ignore the date.

VIDEO!!! Snow Angels.

Excuse me, wtf r u doin in ma yard?!

We need to reset the timestamp on the damned thing.
pixie_elf: (Default)
The only thing they can do for now, is increase my dose of Elavil. Not really suprising. It's only going up to 100mg.

Unfortunately, I know with clusters I need to hit 300mg. Which sucks. But lucky me, it doesn't make me sleep. (A normal human being takes 5mg, is out like a freaking light. I take 75mg, and oooh, I STILL DON'T SLEEP WELL. D: Fuck you, medicine.)

They want me to follow up in 3 weeks, and we're going to call pain management in a bit. They sent my referal in, we haven't heard from them because the phone line was fucked due to the weather.

Basically since the hurricane every time it storms, it fucks the connection over. Not just on the net, but on the phone.

So apparantly my doctor has been frantically trying to call us. He was like "I kept calling but no one picked up. D: D: D:".

So, I've apparantly freaked both a young neurologist out, and an allergist. Woo hoo. Normally I just confuse and perplex them.

Oh gods.

Dec. 10th, 2008 02:10 am
pixie_elf: (Default)

Yes, I know what the title is. WATCH IT.

Second, Friday, Allergy called. My liver functions are fine, however, my red blood count is low. Lower than what it was the last time, so they were wanting to know if I was seeing hematology.

Well yes, but unfortunately, he wants to refer me to them, their hematology department is, like the rest of galveston, fucked up. He can't figure out why the hell my blood isn't clotting properly or why I'm anemic.

Neurology has not returned our calls, most likely due to the fact I am slightly screwed on that end. XD Oh well. At least the Baclofen is cutting the attacks in half.

I'm about to start taking Skullcap. Woo. We'll see if this helps me any. At this point? I'm willing to try self-trepanation if there's a chance it'll help. Hay, maybe it'll make me psychic. (The trepantation. Not the Skullcap. XD )

Friday we're gonna babysit the kids for Brandi. I'm excited. :D

It was SO sweet the last time we did. Brandi bought big Jose a riding lawnmower for Christmas, and had told him she had his birthday/Christmas present there.

So he drove up and he saw it and he was like "BABY, ARE YOU TRYING TO GIVE ME A HEART ATTACK?! ARE YOU KIDDING ME?! IS THAT FOR MEEE?!"

Then he CRIED. It was so sweet. He said "I thought you were getting me a playstation 3 or a wii but this is better than both!"

Then he said "I just bought a weedeater... Now she can use it while I mow the lawn!"

Brandi: "Yes, and since I don't know how to use one of those, you'll be able to tell which part of the yard he did, and which part I did..." XD

...Tara even hugged Jeff. It really made us all emotional, how excited he was.


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