Ice Picks

My 15 yr old daughter is having ice picks shoot thru her brain. At least that's the way she describes it. She's had a bad headache since she worked out in the heat on Monday, and yesterday the ice picks started. Up to that point, since the surgery in April she's only had "tooth picks". The difference is obvious - tooth picks are just little shots of pain, while ice picks practically bring her to her knees from pain. Of course I've got a call into Hopkins.

The MRI showed everything was ok, no tumor growth or adhesions into the spinal column from the surgery. And her VP shunt looked ok, so it's not the hydrocephalus. She hasn't had any full blown spells like seizures in a while either. She's always got a small headache, but she ignores that. So I guess maybe she's just having migraines. Or it's something else. Who knows. Ugh.

I just needed to get that out of my system. If I hold it in I'll explode.

Smokers

I'm not a smoker, but I'm tired of feeling guilty when I take a break to go outside and enjoy the sunshine. For some reason it's ok if you're out there smoking, but if you're not smoking everyone looks at you like you're slacking off. My boss will walk past all the smokers and stare only at me - the one who's outside trying to dodge the 2nd hand smoke. I beg your pardon - the smokers go outside every 15 minutes and spend who knows how much time smoking & talking and no one calls them slackers.
Just try joining them in "Cancer corner" sometime. It's like you have 2 heads and they all just stare at you. Of course there are a few nice people that you already know, but the rest act like you're the enemy. Maybe it's because I'm wearing a bandana over my face like an old time train robber to filter the smoke...... well, I haven't done that yet but I'm thinking about it...

Stinky

Is it ok to tell someone you don't know they smell rank? I was at the gym this morning on the treadmill and a woman got on the treadmill next to me. The smell almost knocked me over. I can't even describe it other than it was so unpleasant I had to leave the area.

I certainly don't smell like roses when I finish, but this woman had just started working out. Smelling sweaty is a fact of working out, no big deal. Even the occasional "gas" bomb is expected when you're in a crowded class. But in this instance, I think she had been a month w/o bathing. And then, after she finished she didn't take a shower. She just packed up and left. Hopefully she lives close by & went home to shower.

I was trying to think of why someone wouldn't bathe....no water? The gym has showers with soap & towels. She belonged to the gym so she had to be paying for the services. Did she not realize it? How can that be? I'm always so paranoid about stuff like that. I may look like I just rolled out of bed, but I don't believe I've got a green cloud hanging over me. What if I do and don't realize it? I've gotta go take another shower.....

Fun Fun

I went to a punk / emo/ Ska etc etc etc concert with my daughter. Not that I would normally have gone, but with her medical status I want to do everything I can to make her happy. So we walked around to the different stages & watched the guys/girls/whatever jump around and do crazy things.

I must be getting old. For some reason, I related everything to Sesame Street. I don't understand the "Cookie Monster" way of "singing" - it hurts my throat just to think about it. Of course my daughter loves it. Then there's something that sounds like "Elmo" trying to sound like Cookie Monster, which she also enjoys. And there were plenty of "things" that looked like they would belong on Sesame Street if they weren't so scary looking.

To my surprise I like Ska. It's kinda like the music Chicago played back when I was kid listening in the back seat of my dads convertible GTO. Trumpets & trombones. Pretty cool. We did our little Ska dancing to a couple of those bands.

I was too young to remember the love & peace sixties. Hippies, F-war and all that. I was very surprised how much the kids at the concert were into that type of thing. There were a lot of "F-Bush" t-shirts. Lots of "NO MORE WAR" shirts & posters. And there were plenty of petitions going around. Not that I don't agree with them, but I wonder if the kids even understand what they are wearing or signing. Do they watch the news and see the hideous things going on all over the world? Or are they going against their parents? I didn't see many parents there. Were the kids just acting out against what they perceive as society? I know when I was a kid I'd do anything to go the opposite direction of whatever my parents wanted. I had no clue what was going on in the world and I didn't care. I just knew it pissed someone off so I was happy.

I make sure my kids know everything that's going on & let them form their own opinions. They don't need my twisted point of view messing them up. My daughter happens to love Bush, but also loves the F-Bush and NO MORE WAR stuff. She agrees with both sides. She's got a lot of valid points and she can always make me think. My other kids couldn't care less. My two step-sons are in the Military so we know what their viewpoints are. And my husband - forget it! Don't get started on politics with him - Mr. Military - it's like arguing with a drunk. He repeats the same things over & over and gets very aggitated if you don't share the same views he does.

I just stay away from talking politics altogether. People get sooooo crazy about their beliefs. I'm a born again Christian but I'm certainly not going to push that down anyone's throat. I think people need to make up their own minds. I don't vote based on a particular party, I vote on the particular candidate.

Just ramblings.....

Glory calls

Ok, I admit it. I'm one of those EMT's that prefer blood & guts calls to the sick person calls. They're called Glory Calls. Why? I have no clue. It's exciting for some twisted reason. It gets your heart pumping. And it gets you out of bed at 2am when the tones drop. But what about those sick person calls when you could make a difference?

We got an all county call for an address that was a good hour away from our station for an 86 yr old w/ chest pains. They tone every 5 minutes, and it got to 17th notification(tone) before they got another county to answer the call. I didn't get up because I just knew someone closer would get it. So as I'm laying there feeling guilty, less than 5 minutes go by and there was a call for an ATV accident. No sooner had the dispatcher finished getting the words out, people came out of the woodwork to run the call. People who just 5 minutes ago couldn't get out of bed to help that possibly dying person. People whose station was 5 minutes away from where that sick person was. I don't know what happened to the chest pains person, I pray they got to the hospital in time.

We're all volunteers. Technically we don't have to do anything. I'm not saying anything bad about the people who ran the ATV call, I'm feeling guilty that I didn't respond to the chest pains call. I did not respond to the ATV call, by the way. It also was not close to our station. I do know one thing, if I'm ever having chest pains I'm calling it in as a gun shot wound. That'll get people out of bed for sure......

Yay, I guess

Happily, the MRI was normal. Well, as normal as it can be with a brain tumor & chiari malformation on it. Nothing to cause seizures thank goodness. Now we play the waiting game. Basically, it appears we have to wait for her to flop like a fish before they'll do anything. Actually there's nothing that can be done now anyway. The "spells" are few & far between, and there's no reason to put her on meds yet. I guess we'll see what happens when school starts.

I don't really believe everything docs say. When she was first diagnosed there was one set back after another. Just when I thought I could relax something else would happen and the rug would be ripped out from under me. So I just can't relax. I guess I'll always be tied up in knots, and staring at her just waiting for something to happen.

Enough about this. It's too sad. She's gonna be fine. I'm the one that's a mess. And yes, prayer definately helps.

knots, tangles, confusion....

I'm so nervous I could throw up. Tomorrow my baby goes for yet another MRI. I know she's 15, but she's still my baby. How much can one person endure? She's got a brain tumor that is benign and hasn't grown in 10 years (yippee!!!!), but they can't touch it because it's on the brain stem. They just put in a v-p shunt and said we'll watch it. This year she was diagnosed with a Chiari Malformation and had surgery for that in April. Things were starting to look up, when she started getting headaches again, and now she's having seizures. So the MRI tomorrow will hopefully show the seizures aren't related to the tumor or the malformation or the surgery itself. Is it ok to hope that it's just plan old seizures so she can take a pill or two a day instead of getting more surgery?

It's terrible. I dwell on it. It's been 10 years of dwelling. 10 years of relative quietness. Now all of a sudden my shadow is hurting & I can't do a damn thing about it. I love her so much. I can't imagine life without her. I've got other kids that I love dearly, but she's my angel. She's the voice of reason when everything is going crazy. She's got more common sense than I'll ever have. I could talk about her 24/7, but I try to not bore people with my problems. Nobody wants to hear the same thing over & over. But it keeps playing over & over in my head, 24/7. I have to make myself think of other things. I have to make myself work. I have to make myself not cry. I must be happy. I must be positive. I must not go insane....