Update.........

OK,so you know how i told you guys a few days ago or something similiar to that calculation (my brain is fried tonight, can't think straight) that I had staff in my left middle finger? Well, i'm proud (maybe not proud but certainly grateful) to say  that it is healing nicely. i think the actual bacteria has left and in its place is some damaged skin and frazzled nerves (from me and my mother).
maybe now i can increase my celcept (immune suppressant) but unfortunately my steriod dosing will NOT be lowered quite yet because my blood work showed i was in a flare-up. A flare-up? I feel perfectly normal, i have even been going to the barn a few times a week now, and my energy is normal and i don't have any weird feelings beside the constant hunger that steriods cause. So what is flaring up?
I'm finding surviving this easier than I had once imaged. The dreaded words that had flown from the Dr's mouth many months ago, "This disease does not have a cure" don't seem so dreaded. but maybe thats because my mind hasn't fully operated around the idea of being stricken with this disease forever, though many people with lupus have normal lives...why can't i?
someone suggested to me that i have a publisher look at my work, a fasinating idea indeed! i never thought that my possible first published piece would be blogging, i always imaged myself publishing a horse novel, with a catchy title that i will not say (for ownership and future protection reasons). but the idea that i could have a book of my own fasinates me! makes me wonder, is this the start of something new, great and exciting? am i destined for bigger and better things at an early age already? it excites me, this healing and rehabilatating. Because so many things in my life are constantly changing, for better and for worse, that this one ray of hope might just get me through it all.
With hope, love and the future bright in my eyes, i wish u all who read this to having a forever happy day tomorrow and the next, for sunshine to shine on your face and for the breeze to ruffle your hair and surround you with scents of spring. from the overjoyed blogger, still more to come.........

Staff w/ Sides........

Ok, so the little fluid sack on my left middle finger? its staff, a bacterial infection. because my immune system is already lowered and i need an immune system to fight this bacterial infection, plans to increase my celcept have dramatically halted. i am to stay on regular doses until the bacteria goes away. but staff is becoming hard to rid of, my finger looks like a war-zone every time i unwrap it, soak it, clean it and rebandage it. i'm sorry to say that despite all this, i indeed went to the farm today and helped out as best i could without using my left hand. i watered the barn but didn't touch anything too dirty or possibly infected with other germs. i stayed away from people, since it could spread from skin-to-skin contact and i did not ride, because in the case that my finger got aggitated, i would want to be near a bandage, a faucet and some anti-bacterial ointment.
but we finished chores quickly, thanks to the fact that there are less horses on southmowing than in the past. and my friend and i got out sorting through our groom boxes and winter belongings stashed away in the barn owner's back room. now it looks spiffy and clean and i can wash my coats and gloves and give things away that don't fit....
in all, this day has been affective, as usual. but let me leave u with this, sometimes, the simple things in life like cleaning out groom boxes can bring back the sharpest, happiest memories. more to come.........

Went to the doctors and guess what happened......

So I was already hesitant to go to the doctor's, as anyone would be when knowing there could be progress in your disease or if your disease has gotten worse. I had this.....weird sack of fluid on my middle left finger, which I promptly showed my doctor when at Dartmith, thinking she would just say, "Let the skin break and the sack drain..."
Nope, she wanted to stab it and collect samples! She assured me she knew a spot where it wouldn't hurt. So they bring in these tubes, this needles and lots of gauz. I swallow down any fears, even though I have suggested that they let me prick myself. Dr. Wartmen assures me and tells me she's an expert at this stuff. So she pricks the spot and it doesn't hurt, and she squeezes and takes a sample. than she pricks another, smaller, more sack and pricks it, it bleeds and hurts a little, but otherwise its fine. she starts squeezing both opened spots, collecting blood and fluid. than....she goes in for the smaller sack again and touches a sour spot. i pull back and holler, and i feel more pain. the needle has gone deeper into my finger, clean streaking through several unneccessary layers.
She tsks and reaches quickly for gauz. "See, you shouldn't move." my finger is bleeding, a little spout of blood building, it almsot drops to the floor but she dabs at it in time. now my finger is on fire and i'm pretty pissed, not at her or me or anyone, but just pissed in general! i had thought this would happen, and what do you know, i'm an open Yellow Stone Gyser of blood! My mother insists it could have been much worse but frankly, i have bled a lot in life and i have never seen so much blood come out of a tiny finger so fast.
today Dr. Wartment calls. i have staff, a bacterial infection. i will not be changing any doses in my immune supressant until this staff is cured, because my immune disease needs to be able to fight this. so now i got to soak i ttonight and possibly reopen it, because there is another layer of puss and its getting darker, purplish. ew......not letting anyone but ME  prick my finger, i've learned the hard way. so that was basically my general experience, but than again, there is usually always a story to go with my monthly doctor's appointments at Dartmith.
So, with the blood and gore in the past, i must admit, i am surprised. my condition is improving (though the doctor says that my lupus is my blood streams read im in a flare-up, but i am not in pain or discomfort. my rash has not returned.....what is flaring up?) i must admit, the several pounds i have gained thanks to my eating are starting to concern me. im being self-cnscious now, watching what goes before my eyes before i open the kitchen doors. a carrot, yum. the cheese cake shoved in the corner i pretend is a cake made of raw, unsanitary tofu. leave it to my dad, he buys the greatest treats and i can use my imagination to make them goo-filled, disgusting things in my mind. the one thing though that i will not give up or stop eating is ICE CREAM!!!!!! i deserve a bowl a day, for god sake's! why make my life harder? i know some certain people will read this tomorrow, so let me tell you this. if you stop buying ice cream, i will find my vengance! and trust me, i can easily find ways to make you regret never stopping at the store and buying my chocolate ice cream. (but remember, i loves you, im saying this to a certain peson i know reads my blog every morning and who is ee every night) my roughness in my demand is general, but genuine.more to come.........

Doctor's appointment......

tomorrow is my appending doctor's appointment at Dartmith with Dr. Wartmen. she is a great doctor, but i am apprehensive, my course of steriods is only for six months and my immune supressants for eighteen. i know that she wants me on Placquinel forever, and i know that they're thinking about dropping the Celebrex (much to my relief). but will she insist on something more? i mean, taking Placquinel for the rest of my life i can deal with, its a tiny pill and has no real serious side affects and i know im not taking Celebrex for the rest of my life, just because.....being on something too long with already serious side affects for short-term use could be a serious problem and Dr. Wartmen is almost positive taking it for the rest of my life is not neccessary. but than again, i don't know how doctors think, especially with patients with lupus like myself. will she prescribe more drugs that promise long-term relief in short periods of dosing or vice versa? will my life be filled with pill reminders, constant stares of awe and amazment as i take my pills, or will i have a "normal" life, whatever normal means these days. the answers lie within. i will write more on my visit once i get the chance..more to come........

Easter with lupus.........

First i would like to say, Happy Easter Everybody!!!! Easter is a time that kids cherish, finding candy and than opening easter eggs to find yet more candy. But it's also to the religous a celebration of when christ rose from the dead. and than to me its a very special easter this year. Because it's my first easter with lupus.
Never was much of a person who cherished the first christmas, let's say, with a new haircut or new friend, i never had those really sentimental moments in my life, it was just another holiday with another change in life for me. but this is somehow different, even though it goes against everything i believe in. i believe that holidays are meant to be spent with family and friends and that any stress should momentarily be forgotten and any new changes, good or bad, should be dropped from the conversation. so i find it hard that i am writing this so freely. Lupys has taught me that change can happen with the blink of an eye, so cherish what you haev and do now because someday it might turn out differently. got a B on a math test you wanted to ace? well, think of it this way, you'll get more satisifaction when you take another test and get an A.  got dumped by your boyfriend? that's ok, it means you can find someone new and exciting.
there's always a down side and upside to lupus. i get to experience things some people never want to do or are interested in experiencing. i get people to listen to me, (not that i ever use my disease to help me get stuff) but it makes people want to listen to me more, like somehow having a disease such as lupus makes your voice heard, and whne your voice is heard, its easier to get certain points across.
so i just want to say, Happy Easter Everybody!!!!!! Even if things look bleak and grey now, or are perfect at the moment, just remember. change is the only consistent in life, so don't dwell over something, its going to change. more to come...from the easter bunny fan club..

Sleepovers with drugs..........steriods that is

you never stop to think about the luxuries of having slumber parties or less fancy, dramatic sleepovers. you take it for granted. and than after you get diagnosed with something such as lupus, your world changes. you can be ill for months, fine for days and go back into a flare up for several more months. so sleepovers are few and far apart for me now, and as im writing this late at night with my best friend sleeping on a pull-out mattress by the foot of my bed, i wonder, is this going to be more rare than often? am i doomed to have an anti-social lonely life in high school? i mean i want to concentrate on good grades and such, but i do want friends and sleepovers and times to hang out. i don't want to be a spinster or anything.
i am worrying for nothing, i realize,  i am only thirteen. i have a whole lot of time before i should be worrying when my schedule is full or not. and when im an adult, a full schedule will seem like hell and a minute of free time will be cherished, right now its just backwards for me because im a kid, a mere teenager. got to go, i think im annoying my friend into exhaustion.....more to come....please keep reading my blogs......

Black, White and Grey........

The bright colors of hope, of future are nothing compared to the colors of your life in the present. You got a dog today, great! a new family member has arrived, just like when a newborn has arrived. Excitement fills the air. the colors are frazzled, mixed. but than i look at my own life, the life that has no colors, its black and white, and i think, i either have lupus or i don't. it'd be a plain white lie to tell myself i am simply normal.......that i don't have lupus, and lying is never something i've completely felt comfortable with, unless of course its to protect myself from something or someone.
but than i look deeper, into the murky pool of grey. I think, could there be a balance? Where i live my life with lupus always there, but somehow not? Sure, that's possible, if i went into remission, although the facts that i have received during these pasts months show, that may not always be the case, and if it is, it can come back more easily than it dies. so what are my other options?
People look at me and probably, assuming they only know my medical past, think, "Aw, that poor girl is sentenced to a life in the hospitals." But really, am i? besides the many, countless appointments with specialists and being poked, prodded and tested every month, is that so bad? worse than the kids who fight cancer daily, their only known home is the hospital bed that some are fortunate enough never to have to stay in for long? i would like to think people judge me after getting to know me but knowing how shallow, unfair this world has become, i know first impressions count more than whats inside. so does this lupus defy me, make it black and white for some people and grey for others? to me, its simple. i have a pretty black and white path, there's no merger. but in the case where some people might think there is, let me correct you there.
you're dead wrong, i can have my life be perfectly simple yet perfectly extrodinary in no time. i do not judge, i do assume, that is the biggest flaw of all, i myself speak of people who judge harshly when i know in turn every person in the world has made wrong first impressions, including myself. so lets think of this, are we judging people because of their appearance, their posture, their accents, their illnesses, or are we just waiting to find someone who, in our own eyes, we cannot find a flaw to? More to come..........

Instead of just sitting around, waiting on tomorrow..........

I gotta let my feet off the ground, the time is now! i thought lupus was a restrictor, something that would prevent me from having my ultimate dream, a big house that i myself built, a nice property, dogs, cats, and most of all, a few horses, hopefully retired or permanently scarred ones, that could live the rest of their lives in luxury in my presence. But NO!!! Lupus is going to make all these simple hopes more worthwhile.
My main thing is, lupus cannot restrict me. I will not let it hold me back. If i do, than that is like giving up on my entire life, letting something invisinle rule me because of my fear of failing, or being hurt. I want to have an active, social life with family and friends. Lupus cannot take my life away from me without me allowing it. i never really in the past HAVE ACTUALLY allowed it to, but the thoughts of surrendering have become all too familiar to me. That is why i am determined, now more than ever, to get a good career, earn enough money to build my dream house, and hopefully someday have a nice, cozy tiny barn that can hold a few, homey, old timer horses. (and maybe some chickens......for eggs) My dreams are becoming more and more closer, when i finish high school i hope i can maybe take a year off of school to travel wherever i can.  attending college is a priority, but i would like to taste freedom, gain my surroundings with lupus, before i go back into "hitting the books" as they say. So if you have something you think that will hold you back, don't let it get to you! it will only make your life accomplishments that much more special because you had to earn those accomplishments while fighting something that usual would restrain!!!!!!! More to come........

Fighting it while embracing it.........

Ok, i must say, i am finally getting back to my old self, if thats even possible. i'm getting back into the jist of hanging out with friends, going to the barn to ride and play with doggies alike, and i'm starting to become more active, assigning myself more projects (for example i'm the main base for organizing a fundraiser for my homeschooling group, and getting a fundraiser up and running is HUGE work). But than, while i'm embracing my old life, i'm fighting my new. i'm partially still in denial that all those pills bottles are MINE.... i'm still debating whether or not constant riding is a fine idea on my lupus, and most of all, i don't like to think about the doctors appointments that i have monthly at Dartmith. too many needles, too many viles of blood taken, too many repeated questions that get asked every time, and most of the time have the same answer. i want CHANGE!!! good change, like maybe i'll start getting one hundreds on my math tests or maybe meet some new friends and have a blast. maybe some horse will be boarded at the barn and we  click, and bam, i got myself a new riding companion! Something exciting, something juicy. isn't that what everyone wants though? good change, a change you can embrace. I mean, besides the fact that my steriods are OBVIOUSLY helping my health, well, physically, and things are finally settling into a comforting routine (until high school, which is two years away.) but somehow i want more!!!!!! I am selfish in this reason, but isn't it what every average person wants? something to change in their life, to make a difference? with or without a disease? more to come.........

I dedicate this message to.......

I talk about lupus, all the time on this blog, that is the point of this blog. But recently i have spoken with someone who is much more braver, much more dedicated to fighting and living her life. Her name is Elaine, and i dedicate this blog to her. She is an inspiration that everyone should follow. She continues to put horses into her life while dealing with rehabilation from broken hips and cancer. She remains faithful to horses, to her responsibilities in the equine world and tries to keep her life as normal as possible. I owe her a thank you, because her story is so inspiring to me. I hope someday i will be able to stand in the exact spot she stands in today, and say, "I am a patient of lupus, and i have a wonderful, beautiful life ahead of me". So thank you Elaine, and if you read this, just know, you are one of my biggest role models EVER!!!!!!!!! Thank you again, hope to see you in the show ring.
Sincerely, from the blogger of A Day in the life of Lopus, Kayla

Waiting..........

What is blogging? What is waiting? Than you ask yourself, what is lupus, really? It's a disease, and until now, it's never hit me that i have a disease. I always thought that, "Oh, something will happen and than everything will be normal." But now that i know nothing is going to change for the better on my health, am i just supposed to wait around and live my life around something that affects my organs? I want to live, not wait for someone to tell me how to live, how to eat, when to take medications!
Wouldn't you go crazy, being told how you're supposed to live the rest of your life just to avoid a rash or outbreak of your disease? I am going crazy, between daily stresses of life and trying to make an actual life of myself, waiting is not an option anymore. Maybe some people have better patience, hence why they can somehow understand this blog, but than i am not a patient person.
What do normal people wait for? The bus, the subway, the train.....a cute clothes store to open, their office to open, the alarm clock to ring.... What do i wait for? My doctors appointments at Dartmith, the appropiate time to take my steriods and immune suppressants, when i can put my special, sun-block cream on my face to prevent a rash. i must wait for blood work to come back and sometimes, when my disease flares up, i must put my entire life on hold just to wait out the flare-up. Sound normal to you? It should only sound normal to people if they themselves have an auto immune or life changing disease. nothing about my life is normal anymore, thanks to one genetic flaw.

Lopus or Lupus..........

Correct spelling: lupus. The spelling that 95% of people use: lopus. Why do two things that sound so similar must be spelled the same? It's quite annoying. But than again, most things in life are either spelled, heard or listened to wrong. Life is like a telephone game, at the end of it all, no one will hear the exact same thing that you have started.
Lupus is complicated, and it doesn't help that i'm starting steriods. Last night was my first dose, and boy, i am not looking forward to eating like a horse thanks to the drugs. Well, i think personally i need to loose weight, but the feeling of always being hungry will get to me. Thankfully the side effects kick in after weeks of steriods, so i won't really have to worry for two to three weeks. but boy, maybe i have some eating disorder, everyone says i'm too skinny. Or maybe its OCD, my body's obcession with wanting certain things to be perfect. Whatever the case, i think that steriods will help me, and i don't have to be on them for very long. six months, possibly a year. But these immune suppressants will be on my medication list for eighteen months, great! And they r super hard to swallow. so they suck either way! more to come...............