Thanksgiving

My second Thanksgiving with lupus came and went without a hitch, no thanks to the "miracle" medicines and more awareness that comes with getting a disease. Although  these drugs do do miracles, miracles sometimes come with consequences and that is what happens to me. "chipmunk cheeks" come with steriods as well as increased hunger (though I do not have that anymore) and increased weight (again, do not have that anymore, have lost all of it)
Because I am down from 60 milligrams to 6, it has been a huge difference. If i had had Thanksgiving on 60 milligrams of steriods, my gosh, I do not want to think how much I would have eaten, and how much my body would not need.
My life seems to be going back to (sorta) normal and in a routine of some sort. My social life is back, now more than ever, and despite the ups and downs of life, I know I can get through this without laying on my death bed wishing for more pain medicine. God how I hate those memories. I wish sometimes I could just erase them.
But the devine complexes of life does not allow me to forget, and maybe for good reason, If I forgot, would I have learned as I know now, probably not.
Well, Happy (late) Thanksgiving everyone! And happy holidays!!!!

Retiring doctors

TREMENDOUSLY SAD! My doctor at Dartmouth today told me July 1st 2012 she's retiring and I'll be assigned a new doctor! Now, I know I hate doctors in general for all the things they have done/given to me but seriously, I was just starting to warm up to her and get really comfortable telling her things. Things in life for me haven't been going as smoothly as planned or wanted and that's partly why I haven't been writing in this blog for awhile and for that I apologize.
I had two appointments in the month of October, one in the beginning making up for my missed September appointment and my original one today- the total amount of blood they drew this month, 12 viles! YIKES!
My blood work and urine work is looking good, I'm not any worse but I'm not getting as well as fast as my doctor would like....so that's not really good.
My "chipmunk cheeks" from my steriods are reducing down to next to nothing, I am now on 7 milligrams of steriods a day, which is a HUGE improvement to 60. Again.... YIKES!
That's my short update, but in general things are looking up. The end of the horse show season, for showing for me and for looking and watching horse shows, is coming to an end, which is sad, and the leaves are turning colors and the bitter frost is setting in. But it also marks something that I ABSOLUTELY LOVE... my birthday! October 29th I turn 14 which means in one year I'll have my permit! WATCH OUT ROADS! (HEHE)
So I am excited about that and about my birthday bowling party at the local bowling alley. Just a few friends, some bowling lanes, some homemade cake (thanks Mommy) and some good times and (hopefully) presents! Not trying to sound too vain or selfish but who doesn't like presents?!?!?! (I DO THAT'S A FACT!)
So yes, things are looking up in the long run. Last year of homeschooling, I'm in 8th grade now. Next year I'll be in high school.
I'm also in therapy now for depression matters once every two weeks, thanks to some mishaps that happened in the past (rather not speak of them at this very moment)
I hate therapy and therapists but my therapist is nice but what she does makes me mad and angry and sick, even in those terms, they do. I don't quite understand yet why I am subjected to this kind of treatment, I can handle anything with my own mind and I don't need some nosey woman wanting to know every detail about my personal life.....therapy or no therapy.
Well,  I certainly promise to blog more often, that's for sure, I have forgotten how much stress blogging takes off my shoulders.
With love and affection,
Kayla

It has been awhile but.....

Here's an update! I've been reducing steriods now for awhile and I am LOVING IT!!! The "chipmunk cheeks" are slowly going down, but of course, with reducing steriods, there are some side affects. Sometimes, my emotions are out of control, why, just the other day on a long trail ride to the Green River, I had a panic attack which I haven't had for years and its very rare for me! And I'm also feeling VERY tired, even when I haven't done that much a certain day.
Horses and my puppy are a big part of recovering, but also it's just keeping my spirits up knowing I'm getting better. Between summer shows, horse camp and cook-outs at friends and sleepovers and just having fun I've barely had time to concern myself with my health or indulge in my OCD!!!! (Sometimes it does return, but it's not nearly as bad as it USED TO BE!!!)
I'm in a better place now. I'm happy to say I think my health is finally turning out to be predictable!!! :)
Here's to a better, healthy future!!! :)
I'll write later!!!!! :) (Promise)

Graduation

Summer time is here! That also means that graduation season is in full swing- dresses and high heels shoes for girls, tuxedoes and bow-ties for boys.
And tonite, is my graduation for my old school! I go every year even though I am homeschooled, because A, I like supporting the graduating students, and B, there's a fun dance afterwards that goes after ten, sometimes reaches 11 o'clock.
So tonite, instead of going to the stables, I'm going to go to Halifax's graduation, being picked up by one of my old friend's mother's, going to her house, and than arriving with them to the graduation. Now I will say, there are some awkward cliques to deal with, and there are some awkward moments every time I step back into Halifax's doors, but the overall joy and good memories are worth millions of awkward moments and pauses and stares and glares.
So tonight I go to the party, and I must say, I am excited!!!! Fighting lupus does take the energy of me sometimes, and I rarely go to dances at all. So tonight, I vow to enjoy myself completely! Haha!
Keep on fighting!
More to come.......

Getting back on track (finally)....

My life finally seems to be getting back to normal (as normal as normal can get having lupus)! I've started dropping steriods, from 12 pills to 11 pills, this started last Saturday and this coming Saturday I'll be dropping from 11 to 10! Every week until mid-August I'll be doing this, eventually ending with no pills! But the Celcept, my immune supressant, will continue for at least a year and a half minimum, possibly for years. (Eep)
In other words, I've started riding again. Besides the fact that spring has flown by with a wink and winter seems in the past (except for all these storms and tornadoes, like four deaths in New England) the weather has drawn me out and I've gradually began rebuilding my riding muscles. I'll be competing again soon on a lovely white gelding named Teak and this Friday will be attending a special group riding lesson with one of the best instructors in the world, Franquis (such an honor).
My new puppy, Rose Petals Marie Yurkevicz (Rosie for short) is almost 5 months old and growing rapidly, adjusting to life as a barn dog. From being zapped by the eletric fence to receiving her first tick to graduating from sleeping in the crate on the porch with my Mom and dad to in my bed, things have slowly regained normalness. But the fact is, lupus doesn't go away. Unless (if possible) they can find a cure, I'll always have reminders. But I must remember to live my life to the fullest, not worry about long-term plans (for goodness sake's I'm just a teenager!) and basically enough everyone and everything in life!
more to come.......

Update 2

Ok, so taking steriods isn't my favorite part of this whole thing (God, who would LOVE taking steriods?) because it makes you gain weight (though many people say I was far too skinny in the beginning, but still, people are noticing my cheeks look.......fuller)....and it's just an overall pain.
But starting next week on the 28th, I will go from taking 12 pills to 11 pills, and every week, I will decrease by one until in mid-August I will be done...yes....DONE with steriods!!!!
So this means A, my hunger should go down slowly, B, I can start losing the weight I gained easier, and C, less pills to take, period!!!!!!!!!!!!!!!!!!!!!
But otherwise I am good, and this month of May has been hectic. Thankfully I am starting to get back into riding at the farm down the road and doing chores, even though this weather is against me.......riding in the saddle or being around horses feels good, it makes me feel at home once again. I am no longer estranged from the world, but part of it. I know what's going on around me and I'm comfortable with it. Things are changing but not neccessary for the worst.
And on the bright side, I've been starting to take out 3 books from the library each week, read them all by the next week and take out 3 more! It gives me good reading material for homeschooling and entertains my mind at night!
More to come...
P.S. For anyone that's interested, on May 29th there will be a fundraiser at Southmowing Stables, 3275 Hinesburg Road, Guilford. From 1-4pm, pony rides for $2.00 and a bake sale will be held as well. Please, tell your friends and hopefully I will see you there! (I'm sort of organizing it) It's to support the Putney Homeschooling Group

Responsibilities...and a visit from the state!!!!!!

After fighting off that dreadful (and I only say dreadful because it was a lot worse than it had to be) staff infection, my Dr.'s have raised my Celcept (immune supressant) but kept my dosing of steriods the same!!! All because I have like, one drop of blood in my urine.......GRRRR!!!! I am sick of being this hungry, though I must admit, I am proud of myself. I have been able to control my hunger by going to the farm (Southmowing Stables) and working off my hunger. I forget about the knawing feeling in my stomach, and I get exercise, and my dog gets to play w/ other dogs, and I'm happy being back where I loved to be. (Not saying spending months on the couch wasn't comforting but........there's no place like the farm) :)
A group of people are coming over later to estimate the price of my home for tax-something....GREAT!!!!!!! (I mean really?!?!?! I'm in such a good mood that it's so nice out, though cold, and strangers got to come into my house, poking and prodding?!?!?! The house I mean,) So, I am dreading this morning. The house, although it can't always be perfect, is fairly clean. My load of dishes are done and I already finished two weeks worth of math in one night........so I am left to read, write, type and walk my dog....playing fetch in our sand pit is one of our favorite games, we could play it for hours if her little legs and small lungs allowed it!!!! :)
Wishing you all the best of luck, the weekend brings promise!!! Hopefully there will be no strangers looking around your home for the billionth time....but one can always dream, can't they?!?! More to come......

Messing with my head.....

So steriods are only supposed to make you really hungry, right? Well, could it be possisble that it also messes with your sleeping routine too? I find myself wide awake at times until midnight or later, and I can easily get up at 7:00 to 7:30 with little more than a blink of the eye! Sometimes I get less than 6 hours of sleep, yet I still manage my day proactively and professionally. What is happening? Am I going insane or do i just need less sleep? The idea of going to bed @ 9:30 terrifies me now, I usually stay up watching TV until ten, while my parents go to bed at ten. I type and read in my room, and I surprisingly never get bored. It's a routine almost, a nice one I've sucken into. But it only started after I took the steriods. Now, I'm not complaining. Why, this morning, before anything else, I did a full load of dishes, brushed back my hair and than took my pills all before even considering eating breakfast. I feel I have enough energy left to do the house chores I promised my mother, and I already corrected my math and I'm starting my short story for literature class, and before noon! Why, maybe today I'll go to the farm, I'm so pumped up on energy. (Though my dog Rosie certainly seems tired, she's asleep at my feet right this moment, snoring like a bear) :)
This newfound energy and sleeping schedule seems to be doing more good than harm, so I will not stress it. For now. If I start doing hopscotch in my sleep, than maybe I'll tell my parents to call the doctor... :) More to come...

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...............

I think i might be crazy

I think when i was diagonsed with lopus at the age of twelve, i didn't know what to expect, well, i was really told i had Mixed Connective TissueDisease, but it will morph into lopus. even one year later i am still debating the pros and cons of this unattended habbit. this is my first blog and my blogging experience will hopefully be successful. wish me luck!