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.
Thursday, October 22, 2009
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.
Saturday, August 22, 2009
Friday, June 12, 2009
Who: Hmmmm....let's think hard for a second....if you guessed me, you win! If you didn't, well, it's okay.
What: Well, this stumps everyone every single time. Well, they know what it was, (JRA), they just have no idea what caused it to go wacko on me. But luckily my numbers were acting freaky, not just my bod. It's when my numbers are dotty but I physically feel okay that we get reeeaaaally worried.
Where: Where I always go when it's not Seattle (very flu-like things, sore throat, body aches. Mom was kind of worried, what with the whole case of swine flu) like last weekend. Not this past weekend, but the weekend before this past weekend. But not the weekend before that, because that would be last last weekend....Ha ha. Anywho. Well, I started feeling sick that weekend. We went into the ER on Monday, were in there for about 6 hours, coming out with a dose of inclusive antibiotics and a shoot-up of Fentanyl. We went home, hoping that 'biotics would kill any bugs lurking in the dark abyss that is my body. Not so much. I kept getting worse, to where I felt like I did before the whoooole thing, back in the fall of 2006. Not good at all.
When: So, on Thursday we packed up the motor home (had a hunch we would be staying. Okay, fine, the doc pretty much told us I would be staying. But anyways.) We load up the motor home and headed into town.
Where: Arrived at the ER about 9 p.m., and it took another 6 hours this visit before anything got done. They wanted to do a steroid pulse, but mom and I wanted to wait. I mean, those things are horrible, and it was, like, two in the morning! So I know it might sound, like, uber insane, but I demanded to be admitted, because let's face it, I was going to be admitted eventually. Might as well have all the luxuries right off the bat.
Why: And so the story goes for a few days, not much breaking the monotony of hospital life. Then my friend and his family (Trent, Sophie, and Wayne) came to visit. That was sooo nice. Such a welcome hiatus. We had a ton of fun playing Rockband. That visit was over much too fast, and then it was back to the same thing; boring daytime television, surfing the web, and the occasional visit from a visiting nurse, teacher, child life worker, or pastor.
This went on for oh, a couple of weeks. Then we finally got the all clear: numbers were normal (enough), pain was (getting) under control; well, enough to where we could finish things up at home. And so we did. And so we are. Still pretty achy, but of course, that's just good ol' me deciding to spice my life up a bit. But I'm well enough that I got my infusions yesterday; that should help out even more. And they gave me the green flag to go down to Kenai with dad for his training. Hopefully they will let the leash out far enough to where I can get down to maybe dust off that toy pony of mine (and of course earn some mulah down at the restaurant and trailer).
The Real Why: So you see, this was all pretty much just a little test to see if I could keep the doctors and everyone on their toes. But don't tell them, they still think they did it all by themselves. Let's just let 'em keep on thinking that. You and I, we know the truth. Everything was all under my control. This couldn't even be considered a hiccup, because it was aaaaall planned. ; )
Me and my tricks. Ya gotta love me!
Friday, May 29, 2009
Marshmallows=Happiness
Happiness is like marshmallows galore
Mini are the ones I adore
Ever tried roasting them for a s'more?
Let me tell you, it's pretty hard core.
People say happiness can't be bought
That it is earned and all that whatnot
I don't believe it, it shouldn't be thought
happiness can very well be bought.
For one can buy marshmallows which is almost the same
The thought of them sets my heart aflame
To say this I am not ashamed
I would climb a building and at the top exclaim
"Because of marshmallows, my life is changed!"
And there you are. A poem to (hopefully) make you smile.
Thursday, May 28, 2009
Friday, May 15, 2009
Oh. My. Gosh. I am so frigging tired. I haven't slept at all tonight. And I am beyond bored. I found this really cool website called originalpoetry.com. It's way rad. You can post poetry on there, and I think even song lyrics. But anyway. I have lots to say. As some of you may know via Facebook, I am having cateract surgery. It's gonna be on my left eye, on June 29. And I will be awake for it. Well, They are going to knock me out for a few minutes, numb my eye, and then I'll be awake for the actual surgery.
So, Mom and I came into town (for those of you uncool (joking) people, town is Anchorage) last night because it's a lot of trouble to come in from home same day. Anyway. As we were walking out of the resteraunt, there was a drunk homeless native man. He came up to us and asked us if we had any food. Mom said no, and rushed us to the car. I felt bad, because I would have given him my leftovers. As we were getting into the truck, we found a bag of gold fish. Mom gave him those. I felt really bad. I cried! It just breaks my heart to see people so low. It makes me so sad. I want to help them, but I don't know what I can do. It hurts me to see a person like that. I know that a lot of them choose it, but that doesn't make a difference. They are still homeless and my heart goes out to them.
Monday, April 27, 2009
Toodles, Poodles, and (why not) Noodles.
Thursday, April 23, 2009
P.S. also kind of excited to have something not boring to post about. Still sounds morbid, but there's no other way I can put it.
Wednesday, April 1, 2009
APRIL FOOLS!!!!
I absolutely LOVE this day!!! Oh, man!!! I forgot what I was going to do until now. Ex-lax brownies! DARN IT. Oh, well.
I would talk about everything I usually do, but I had to take an oxy, so now I'm starting to.....(five minutes later) oops, drift. Okay, I promise I'll me back tonight or tomorrow. Until then.
Wednesday, March 4, 2009
Then we went out to Grandpa Johns house. I LOVE MY HORSIE!!!!!
Sunday, February 22, 2009
Ta-Ta!!
