"At the age of 18 when most girls are entering college and having the best times of their lives, having first loves and getting ready for the legal age of drinking, I was in the corner of my room wearing my uncles old jogging pants since it was the only thing to hide in, eating ice cream and crying until it hurt my eyes.

When I was 16 years old I had pain in my cheeks that lasted for a
month at first, we thought allergies. Lasted 3 months, it was a sinus
infection, lasted 2 years ok somethings wrong.  We had been at the same ent
specialist for a year and half and nothing happened, he still kept telling
us it was a sinus infection. I was 16 and knew more then this guy!  We
requested to be referred to another specialist.  Nov 12th was my birthday
which I spent in the hospital having test after test done.  My new ENT
doctor informed me that my sinus cavities were 100% blocked all throughout
my face and that he had no idea how I got out of bed everymorning.

I had failed a grade of school because of the pain, ice
packs would be secured around my head with the belt from my robe and I
chewed on baby teething rings that I would leave in the freezer.   My teeth would hurt so bad I chewed wine gums for months. My nose would bleed anytime I had a little release of pressure. So kissing boys wasn't on my to do list!

Nov 17th My dr. has me in for emergency surgery to clear my sinus' still thinking i was just badly stuffed and needed to be relieved
he went in.  After the surgery he documented me in his notes as having the worst nose he had ever seen in his 18 year career. This wasn't just a sinus infection.

He biopsied a part of what he took out and sent it to the
pathologists. It came back, I had wegeners granulomatosis. He didn't tell us much about it so of course my mom and I go home and check it on the internet

BIG MISTAKE! 

We saw the worst cases of it where it had spread systemically. 
 
We cried and cried for hours.  Our doctor informed us the next day that
mine was limited WG, only to my sinus.  I started heavy on prednisone and methotrexate. With the predisone I gained over 70 lbs. It increased my appetite and of course it couldn't have been for veggies or anything - NO - it was cakes and such.  I've tried Immuran, Methotrexate, Cyclophosphamide, and now Aravaa, Prednisone and Ceptra are my vices.

In a WG (Wegeners Granulomatosis) handout I found a girl named Lisa that I tried to contact since she had the same symptoms as myself.  I had no email back, so I tried her cell phone which said " you've reached Chantal ", and I knew right then that she had passed away.
My mom told me she prob just got a new cell phone but I knew. Sure enough her mom wrote me back telling me she had passed away on her 25th birthday, which
obviously sent me into a state of depression. She had everything the same as
me! I stay in close contact with her mom and Lisa was her only child and
she's kinda of takin me on and is always interested in my progress.

I was introduced to my saving grace Dr. SImon Carette who is my angel
to this day.  He's the reason I'm here. The symptoms got better but my ANCA didn't.  I was still very much in flare up but the pain decreased. I never understood the severity of this thing until it reached my eyes and throat. 

My eye waters like the Niagara Falls and oozes green things that look like what the Ninja Turtles lived in. Sexy? I know!  My breath smells so bad (halatosis) because of the infection, that when i get in the car my mom is already handing me listerine packs.

The weight gain was a big deal but in 6 years i've done nothing but
smile and laugh with Dr. Carette he never believed I even had the disease until he saw the reports. But the day he knew I had enough, I walked into his office with my boyfriend holding my hand, I handed him a piece of paper because I couldn't talk without crying.  " give me the worlds amount of prednisalone, I don't care if I look like a rhino just please fix it!"   he
looked at me like i've never seen him look at me and he said.. " wow.. you must be just done with this huh?"  and we hugged and that was the only time he saw me cry.

Keeping a boyfriend was out of the question, one broke up with me over it.  My eyes have been operated on 3 times in attempts to stop the watering, little tubes were placed in to drain my lacrimal ducts. This has still been unsuccessful. 

People think i'm crying constantly.. i can't wear makeup and people just
think i'm really sensitive and crying.

At my boyfriends grandmothers funeral I sneezed so many times and
then couldn't catch my breath, I said I was going to go home to take some
pills, when I got home I was very out of breath and couldn't stop crying ( i was really scared) my mom took me to ER right away where they told me nothing was wrong it could have been anxiety!!!!!!!!  I went home.

I couldn't go up stairs or talk a full sentence without being out of
breath.. GRREEAATT now aside from being a heffer i sounded like one too! My ENT doctor put a tube (camera) up my nose down to my throat, and diagnosed me with subglottic stenosis (narrowing of the trachea) and said we should operate.  By this point my curly hair, wasn't curly anymore they said it could be because of the meds or the surgeries. 

Two weeks before christmas I was scrambling to get my exams done early, I booked my surgery over christmas holidays so I wouldn't miss any school. Two days before christmas my throat was dilated and i woke up in ICU.  I was WWAYYYY too healthy to be in
ICU or so I thought.  My wonderful boyfriend held my hair as I puked and my hand as I cried. He's my best friend and I wouldn't be ok without him.

The scariest thing thats happened I think is when I was at the gym and
my left hand started to go numb.. then all up my medial forearm ( inside arm sorry i'm used to anatomy terms) then progressed to my left eye, I couldn't see out my left eye, next my tongue and the left part of my chin... i was scared.. this happened for about 20 min.. I thought i was just really hungry or it was the new meds. I informed my dr right away. He was in Maine on vacation but immeadiately phoned every emergency room in my area informing them of my condition and that they should be expecting me.  He was very scared he was going to lose me. This happened approx 3 more times and I was put into an MRI machine right away. NOTHING..and it's never happened since. I'm terrified for meningitis though.

Lastly my nose.  Every day at least ONE person asks me " did you break
your nose?"  " did you get in a fight?"  what happened to your nose?"  and i wanted to say... " yours is gonna look the same if one more person asks me that!!"  but i didn't. On May 7th 2007 I'm going to be meeting with a plastic surgeon that is going to reconstruct my nose, putting teflon in it to rebuild it.  I said " teflon? are you sure. i have teflon in my nail polish and windsheild washer fluid?"  hahah. We'll see how that goes.

I've had this for 7 years now, never been in remission but I
see most people have it for about 3 years and they've had their worst in those 3 years. So i like to think the worst has past.

My face isn't the face I remember having 6 years ago but it's still mine and I love it.  I'm battling the weight issue since I'm still on the prednisone but I 'm not dead so I guess I'm still winning.