Life. Sucks.
I mean, I know that probably makes me sound like the biggest teenager ever, but it's true. This is basically a bitch session about everything wrong with my life.
First off, the most obvious, my health. I mean, hell. I can't do anything without being affected by it. I know a lot of people are like this, but I'm 17 and really just want to be able to feel like it. Even just every once in a while would be nice. But no. I'm in pain every second of every day. Take drugs? Why? They incapacitate me too. But which ones the lesser of two evils, the pain or the drugged haze? Like honestly. I can't even get through high school without my health effing it up for me. I'm falling back a year because of it. How shameful is that? Like, ooh, I can't graduate on time because I'm a cripple. Like I want to draw even more attention to myself.
And like, what is with my inability to be in a healthy relationship? I can't even find someone in person. Am I that horrible of a person? That I have to go looking on the internet for guys? And obviously that hasn't worked out in my favor. And then they have to come back into my life and rub salt in the wound, usually as soon as I've gotten over them.
I don't really understand what I'm doing wrong. Obviously something, or shit wouldn't be like this. Like I said, this is basically just a bitch session, and I hope all you readers don't think less of me because of this post.
P.S. I'm not sure if I'm gonna keep this blogging thing up for much longer.
Anyway. Deuces.
Kayla's Kapers
A wonderful young lady with Systemic Juvenile Rheumatiod Arthritis and Macrophage Activation Syndrome. I seem to defy the laws of modern medical science. We are home, and the wacky regimen of meds is working........for now. I know that God intended this life, and has a plan for me, be it dying tomorrow or living to be 100. I like to think that even though my life is tough, everything I've been through (and will go through) will help someone to not have to go through their life quite as hard.
Saturday, July 30, 2011
Wednesday, May 18, 2011
So. It's been a really long time. I know. So much has happened since the last time I've posted. So, so much. Bonds have been made, bonds have been broken, and bonds have been healed. I won't name names, but some people I'm glad to have in my life, some I'm not, and some I don't even deal with anymore.
I'm still behind in school, but I have something to motivate me to try a little harder, a.k.a. going back to public school in the fall. I honestly can't wait to go back, and get a fresh start at Wasilla. Warriors represent? Maybe.
Health-wise, I've been doing alright. Me messing with the meds probably caused the flare I'm in...but that's neither here nor there. We can't change the past. So we've DC'ed the Remicade, and started a new one, Tusilsomthingimab. I've only had one go around, so we'll see if it helps more than the Remicade did. Although the new med is every 2 weeks, I think we can handle it. I've done infusions closer together than that. When its the new med by itself its only an hour long, and every other week my IVIG is added on. I really hope it works, I'm sick and tired of being sick and tired.
Well, I'm gonna wrap it up here, because I am about to pass out from serious lack of sleep. But before I go, guess who won prom queen? Me.
See ya, suckaaasss.<3
I'm still behind in school, but I have something to motivate me to try a little harder, a.k.a. going back to public school in the fall. I honestly can't wait to go back, and get a fresh start at Wasilla. Warriors represent? Maybe.
Health-wise, I've been doing alright. Me messing with the meds probably caused the flare I'm in...but that's neither here nor there. We can't change the past. So we've DC'ed the Remicade, and started a new one, Tusilsomthingimab. I've only had one go around, so we'll see if it helps more than the Remicade did. Although the new med is every 2 weeks, I think we can handle it. I've done infusions closer together than that. When its the new med by itself its only an hour long, and every other week my IVIG is added on. I really hope it works, I'm sick and tired of being sick and tired.
Well, I'm gonna wrap it up here, because I am about to pass out from serious lack of sleep. But before I go, guess who won prom queen? Me.
See ya, suckaaasss.<3
Tuesday, February 15, 2011
Wow. Life's been so exciting lately.
Where to start, where to start? Do you want the good news or the bad news first?
Bad news it is. I quit my meds. Again. Should I give you a few minutes to let the steam from your ears dissipate into the atmosphere? Spare me the lecture, please. I know what I did was wrong. I'm still paying for it. So let's move on. Because of me messing with my meds, Dr. Wallace decided that since I didn't, you know, die while I was off of them, I guess she figured, "Hey, maybe she doesn't need all of these." So now I'm on Cellcept and Prozac. Well, that and my infusion meds, but those ain't no big thang.
So that basically concludes my bad news. Now for the good?
I have become a normal teenager. I know, we didn't know it was possible either. But it happened. And it definitely has it's ups and downs.
Up: Driving. Yep. This is a formal notice to all Alaskans, I am wreaking havoc on the roads. Watch out!
Down: Drama. Family drama, friend drama, boy drama...It's all a part of life, right? Bah. Drama is way overrated...
Oh yeah! Finally got my eye surgery done! Woo hoo! I can't read any better, but things aren't as hazy. I go into the opthamologist tomorrow, so maybe next time you see me I'll be wearing a pair of sexy glasses!
My left elbow has decided to be a jerk and start hurting. Doc Wallace says surgery's the only option. Matching scars? Why not!
That's about all I can think of right this second.
Stay classy, San Diego.
Where to start, where to start? Do you want the good news or the bad news first?
Bad news it is. I quit my meds. Again. Should I give you a few minutes to let the steam from your ears dissipate into the atmosphere? Spare me the lecture, please. I know what I did was wrong. I'm still paying for it. So let's move on. Because of me messing with my meds, Dr. Wallace decided that since I didn't, you know, die while I was off of them, I guess she figured, "Hey, maybe she doesn't need all of these." So now I'm on Cellcept and Prozac. Well, that and my infusion meds, but those ain't no big thang.
So that basically concludes my bad news. Now for the good?
I have become a normal teenager. I know, we didn't know it was possible either. But it happened. And it definitely has it's ups and downs.
Up: Driving. Yep. This is a formal notice to all Alaskans, I am wreaking havoc on the roads. Watch out!
Down: Drama. Family drama, friend drama, boy drama...It's all a part of life, right? Bah. Drama is way overrated...
Oh yeah! Finally got my eye surgery done! Woo hoo! I can't read any better, but things aren't as hazy. I go into the opthamologist tomorrow, so maybe next time you see me I'll be wearing a pair of sexy glasses!
My left elbow has decided to be a jerk and start hurting. Doc Wallace says surgery's the only option. Matching scars? Why not!
That's about all I can think of right this second.
Stay classy, San Diego.
Sunday, September 12, 2010
So...yeah. I am super bored right now, and should be doing homework...but I'm not. Don't worry, I've got the lecture on loop in my brain. But I actually have been working on it. A LOT. And I'm getting it done. Sometimes my brain just needs a break, you know? Some chill out time. That and I was getting sick of tossing and turning in bed...So I guess what I should do is update you guys fully and in one place, so I don't have to keep repeating myself (not that I mind, but you know).
School, as I said, is slow goin', but hey, it's still goin' and that's what matters. I'm now halfway into my second semester of sophomore year, when I am chronologically supposed to be in my first semester of my junior year. Oh well. Tough bullocks. Also, and I KNOW this has helped bring my spirits up, I am taking a few actual go-to-a-school classes. One is a really rad English/writing class. The kids in it are awesome, the teacher is ridiculously cool, I get to use an iPad for it, and overall I'm lovin' it and wish the class didn't have to end soon. Also, yours truly, is a staff member for the first ever yearbook for Mat Su Central School! Hold the applause, please. What's really weird is that the counselors suggested students. Now, my counselor and I haven't ever really seen eye to eye, so believe you me, I was pretty darn shocked when I found out he'd chosen me to pioneer the ol' record book. Pleasantly shocked, that is. I am also still in my Horse Course class, even thought it's only till December. Which sucks, but I can't afford any more than that at $250 a month.
Health Stuff...is going pretty good I guess. Just had the infusions, which went worse than usual. I am thinkin' they might have to end up changing the Remicade. It's giving me a migraine every infusion, which is not ideal. At least, not for me! I have an inkling that they might end up operating on my left elbow, beings how I can't hardly use it without, oh, excruciating pain. Minor detail. Who needs their left elbow, anyway?
As my dad puts it, "I'm glad you're finally getting something of a social life". Yeah Dad. Me too. And it's true. Made a few new friends through school and infusions. Been hangin' with them, and of course with my homies from the hood. They're my crew! Geez...the gangsta talk is rubbing off on me. Eee gads! I am (hopefully) getting my license on the first of December. And even if I do pass the test, which there's a huge chance I may not, we might not be able to manage the insurance. Oh well. Roll with the punches, eh?
Not much else I can think of. No love interests that I can think of. Nothing really spectacular about my life anymore. I'd take mundane over exciting any day.
Peace out my home skilletz. Fo shizzle on the home dog.
School, as I said, is slow goin', but hey, it's still goin' and that's what matters. I'm now halfway into my second semester of sophomore year, when I am chronologically supposed to be in my first semester of my junior year. Oh well. Tough bullocks. Also, and I KNOW this has helped bring my spirits up, I am taking a few actual go-to-a-school classes. One is a really rad English/writing class. The kids in it are awesome, the teacher is ridiculously cool, I get to use an iPad for it, and overall I'm lovin' it and wish the class didn't have to end soon. Also, yours truly, is a staff member for the first ever yearbook for Mat Su Central School! Hold the applause, please. What's really weird is that the counselors suggested students. Now, my counselor and I haven't ever really seen eye to eye, so believe you me, I was pretty darn shocked when I found out he'd chosen me to pioneer the ol' record book. Pleasantly shocked, that is. I am also still in my Horse Course class, even thought it's only till December. Which sucks, but I can't afford any more than that at $250 a month.
Health Stuff...is going pretty good I guess. Just had the infusions, which went worse than usual. I am thinkin' they might have to end up changing the Remicade. It's giving me a migraine every infusion, which is not ideal. At least, not for me! I have an inkling that they might end up operating on my left elbow, beings how I can't hardly use it without, oh, excruciating pain. Minor detail. Who needs their left elbow, anyway?
As my dad puts it, "I'm glad you're finally getting something of a social life". Yeah Dad. Me too. And it's true. Made a few new friends through school and infusions. Been hangin' with them, and of course with my homies from the hood. They're my crew! Geez...the gangsta talk is rubbing off on me. Eee gads! I am (hopefully) getting my license on the first of December. And even if I do pass the test, which there's a huge chance I may not, we might not be able to manage the insurance. Oh well. Roll with the punches, eh?
Not much else I can think of. No love interests that I can think of. Nothing really spectacular about my life anymore. I'd take mundane over exciting any day.
Peace out my home skilletz. Fo shizzle on the home dog.
Thursday, June 24, 2010
Well, after being harassed by parents and friends, I have decided to post just for the heck of it.
Life's going fairly good right now. Elbow is maintaining within a few degrees of the range they got on the operating table. I can now touch my face! It is beyond sad that I count that as a major accomplishment. But hey; a day in the life I guess.
MRSA culture is fresh outta the lab. GUESS WHO'S NEGATIVE. Go on. Guess.
Yours truly. That's right, MRSA, you don't scare me. I only have to get two more cultures negative in a row in order to not have to be isolated whenever I go in to the hospital. Cha CHING.
Hm. What else? I think I've gotten all the non-medical shtuff out of the way. Now on to what else is going on.
So, I really don't want to get into it, but school is sucking major lollipops. Not good lollipops either. The one's with the worm in the middle. I am roughly a semester and a half behind. If I just buckle down and get to it I should be able to get it done. Motivation, where are you hiding? Blech.
Instead of taking the time to do homework, I am working on extra-curric writing projects. Save your breath; I already know the drill. Got a couple new poems, and am making tortoise-paced progress on my two book projects. Maybe I can get one published and make millions! Ha. Right.
Uuuummm...I'm trying to think of what else I need to jot down. OH! Something has been gnawing at me for some time. There's that guy in Kodiak who has the same shiznit I do, right? So after one phone call we haven't heard from them. It bums me out. A lot. I would have loved to talk to someone I can fully relate to, and maybe have given him some moral support. I hope I didn't say anything stupid. Oh well. I guess what will be will be. Isn't that a song?
Well, I will leave you with the wise words of one John Lennon:
I am he as you are he as you are me and we are all together.
g
Life's going fairly good right now. Elbow is maintaining within a few degrees of the range they got on the operating table. I can now touch my face! It is beyond sad that I count that as a major accomplishment. But hey; a day in the life I guess.
MRSA culture is fresh outta the lab. GUESS WHO'S NEGATIVE. Go on. Guess.
Yours truly. That's right, MRSA, you don't scare me. I only have to get two more cultures negative in a row in order to not have to be isolated whenever I go in to the hospital. Cha CHING.
Hm. What else? I think I've gotten all the non-medical shtuff out of the way. Now on to what else is going on.
So, I really don't want to get into it, but school is sucking major lollipops. Not good lollipops either. The one's with the worm in the middle. I am roughly a semester and a half behind. If I just buckle down and get to it I should be able to get it done. Motivation, where are you hiding? Blech.
Instead of taking the time to do homework, I am working on extra-curric writing projects. Save your breath; I already know the drill. Got a couple new poems, and am making tortoise-paced progress on my two book projects. Maybe I can get one published and make millions! Ha. Right.
Uuuummm...I'm trying to think of what else I need to jot down. OH! Something has been gnawing at me for some time. There's that guy in Kodiak who has the same shiznit I do, right? So after one phone call we haven't heard from them. It bums me out. A lot. I would have loved to talk to someone I can fully relate to, and maybe have given him some moral support. I hope I didn't say anything stupid. Oh well. I guess what will be will be. Isn't that a song?
Well, I will leave you with the wise words of one John Lennon:
I am he as you are he as you are me and we are all together.
g
Friday, April 2, 2010
WARNING: contents may be disturbing to some audiences. Viewer discretion is advised.
So. I know I am a bad blogger. I blame Facebook. It's like insta-blogging. But not as in depth as regular blogging. So I'm back on this dinosaur to give all the deets about what's going on with me. As most of you know, I've been in Seattle for the past week and a half. I got my elbow cut on, and I mean CUT ON. I've link some pics. My arm looks like Frankenstein. I can only imagine the stories Katrina will dream up about THIS scar. Uh oh. Dinners ready. I will continue later tonight or tomorrow. Adios!
Thursday, October 22, 2009
Okay, due to popular demand (THAT I DON'T SEEEE), I have started blogging again. I think there must be something going on with blogger, cuz I've heard a lot more people have commented than my little comment-counter says......aaand........AND.....Mom said she posted while I was in the hospital. = X oops. Yeah, now that my big mouth has told you, you know I was incarcerated for a small bit. Just a little bit. Not a big enough bit to even mention, really. But I will, anyway. So, pretty much just the usual...blackouts, med changes, and lymphoma... ; )
No, I don't have it (thank GOD), but they thought I did. I'm not sure which drug they thought it was from (they thought it was the Etopocide), and it's not really like they could figure it out...every med that I'm on says that that could be a possible, erm, "side effect". They have to list that on every medication, to be honest with you. I know these things...mostly because my mother studied as a pharmacy technician, but a little bit from my own experiences with the dreadful pamphlets from my drugs = /
Okay, and as some of you know, our darling Gracie passed away this summer...a few days before we got home from Nevada =...( and now, a few months later, we are faced with another trying time....my uncle is sick. Real sick. We're going down to see him. I'll post more when I know more.
All my love.
No, I don't have it (thank GOD), but they thought I did. I'm not sure which drug they thought it was from (they thought it was the Etopocide), and it's not really like they could figure it out...every med that I'm on says that that could be a possible, erm, "side effect". They have to list that on every medication, to be honest with you. I know these things...mostly because my mother studied as a pharmacy technician, but a little bit from my own experiences with the dreadful pamphlets from my drugs = /
Okay, and as some of you know, our darling Gracie passed away this summer...a few days before we got home from Nevada =...( and now, a few months later, we are faced with another trying time....my uncle is sick. Real sick. We're going down to see him. I'll post more when I know more.
All my love.
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