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.
Friday, January 4, 2008
Howdy there everyone! Okay, this is my first official post of 2008! Since it's a new year, we need to start off with a new beginning, right? Well, that plan pretty much backfired right in my face. I was supposed to get out yesterday, but, as always, there is always some reason for me to need to stay. This time it's the Crohn's. Off the subject a little, but speaking of Crohn's, I don't know where this rumor got started, but I still have the Crohn's. Some little birdie has been feeding false information to a few people. Crohn's isn't like a cold, people. There is no "take some NyQuil, you'll be better in no time". It is a disease, and once you get it, it won't just go away. Remission is always a possibility, but you will always be doing treatments for it, and in my case, battling it constantly. Another thing that these birdies are a tad confused about is everything regarding the transplant. WE DON'T KNOW ANYTHING!!!! We won't know anything until at least the 2nd week of January, so don't ask us any more!! We don't know, and don't y'all think I'd tell you A.S.A.P. if there were changes?? Of COURSE I would!!! Okay, well enough ragging on my anonymous misinformant. With the record set straight, I can sign off knowing that whoever chooses to read this will be on the right thought path. Oh, and life sucks right now, since I am now NPO AGAIN!!!! That is a result of the cramps I've been getting the past few days. Just keep praying that things will subside smoothly, and that I will be let out of this prison. I may get in trouble for saying this, but we were going to come down to Nevada and visit before the transplant, since I wouldn't be up to it for a long while afterwards. As some of you may know, my grandma Nonie (Dad's mom) and her hubbie Ralph are watching Gracie for us. She flew down with Nonie when her, Mom, Dad, and I first flew down here in early November. We were gonna drive out to Smith Valley, but Nonie is super super sick, and I obviously can't be around super super sick people, especially now. So therefore, if she doesn't miraculously heal within the next few days, we may not be able to come down. That really really really really REALLY bums me out! I miss Gracie sooooo much! The other day, Christmas I believe, I was on the phone with them, and, being the quirky person I am, I proceeded ton talk to her like I usually do. You know, all dog owners talk in that little baby voice, and they have their special nicknames, etc. So I was talking to Poopsie (that would be the nickname I christened her with), and she went NUTS. As soon as she heard my voice, she started looking around, barking, running around the house, trying to find out where Kayla was, and why she only heard my voice. It was so precious, and heartbreaking at the same time. It was super tough when we found out we may not be able to see her, since we were already looking forward to a visit down there. Of course, we couldn't go to Nevada without going to Grandpa's house. I miss my horse soooo much, I swear I am going through horsie withdrawals. Why couldn't we just skip the sick people, I'm sure you all are asking. Well, the sickness doesn't stop with Nonie. How ironic is it that as soon as I am healthy enough to actually spend some time doing things I want, when we learn I may not be able to go to Grandpa's either! The ironic part being the fact that they, they being Brandon and Trish, have.........omg............get a load of this.......................wait for it.......................wait for it...............S-H-I-N-G-L-E-S!!!!! How un-be-LIEVABLE is THAT??!?!!?!?! Bogus bogus bogus bogus BOGUS!!!!!!!!!!! I am so mad at the world right now, I could scream. I know it will get better in time, but I am sick of time. I want to be better NOW!!!!!!!!!!!! Really, I can't be blamed for feeling like that. Every sick person in the world is entitled to a few of those days, and mine has been long overdue for a while now. It is nice to have somewhere I can go and get peoples advice, and support, and the whole nine yards. I love you guys, you're the best!!! Hugs and kisses to all, and hopefully Next time I write, I will be on my own laptop on my own bed in my own room at the Ron Don House!!! Oh, and silly me, I almost forgot..................HAPPY NEW YEAR!!!!! WELCOME 2008, you'd better be a good year!!!!
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6 comments:
Oh Kayla..... Rant away. A little rant is good for a person now and then. Nobody expects you to be all happy-go-lucky all the time. I hope your trip works out. I hope you get out soon. I hope you wake up tomorrow and this is all a bad dream..... ok, that's not realistic, but you know what I mean. Love and kisses.
Wow I am glad you got all that out I am sorry I was one of those sick people I know I was supposed to come at Christmas but I too was sick I am sorry and I was there with you in my heart I called everyday not that it makes up for not being able to visit I will pray everyday all of the time that 2008 will be great and a Great New Start I do Love you Kayla you are ALWAYS in my heart Love Aunt Kat
Gostei muito desse post e seu blog é muito interessante, vou passar por aqui sempre =) Depois dá uma passada lá no meu site, que é sobre o CresceNet, espero que goste. O endereço dele é http://www.provedorcrescenet.com . Um abraço.
Just so you know..there is not one sick person at my home. I am in Idaho and not Nevada and I don't have your dog or your horse..but I have Hunter and Tate. And of course ME!! Miss you love your fav aunt
PS- What's up with the last blog Spanish..Italian???
Hey
its not good to leave all that frustation bottled up inside other wise youll be like a can of soda that got dropped then opened lets just say the opener isnt very happy well happy new year and whats with that comment 2 up is that spanish....... do u know a spanish person or maybe its a random person who found your blog idk
Well bye hang in there
Michaela
hey you know that crescenet guy hes portogeuse. heres his translation
I liked very of that post and his blog is very interesting, I am going to pass this way always =) Afterwards gives a past there in the my site, that is about the CresceNet, I expect that likes. The address of him is http://www.provedorcrescenet.com. An embrace.
kinda different but im not judging anyone. so be CAREFUL.
P_.S. shingles are gone. they made like a bannana and split.
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