Sunday, December 25, 2011


It has been exactly three years to the day when my first Wegener's symptoms started popping up. 

I can distinctly remember laying in bed Christmas night, in Williamsburg, VA... my sister and my grandmother had just launched a sneak attack with pillows on me and my mom (they won).  I was texting a special someone, being mushy and all that holiday jazz.  Then, out of the blue, it felt like someone had jammed a very long and very sharp knife in my ear.  The pain lasted about twenty seconds, then disappeared.  It happened again, later that night, actually waking me up. 

A few days later, on New Year's Day, I had a fever.  Mind you, I'm not the feverish type.  I'm always cold.  For me to have a fever is a sure sign that something is amiss.  However, being New Years, no doctor was open.  I had to go back to school the next day for my winter intersession English class- Shakespeare on Film.  Feverish and with a dull ache in my ear, I packed and went back to my freezing cold basement apartment. 

The pain got worse, the fever went up and down... then my hearing started to go.  By mid January I was practically deaf in one ear, and miserable.  My pseudo-relationship (if you can even call it that) hit the skids, and I had a final paper to write, and a looming Spring Semester of 15 difficult credits and never-ending extra-curriculars and work.  One GP and two ENTs later, by early February I had lost my hearing in both ears, I was on two different antibiotics and prednisone.  ("Relationship" was mended by then). Then my dad died. I went home for a week. My world came crashing down around me.  Upon my return to school, my literacy professor said to me "Welcome to the world of adulthood". 

A week later, I couldn't breathe, and I was almost totally deaf.  I went to the Health Services at school... they sent me for a chest x-ray and proclaimed pneumonia.  Mom picked me up, brought me to my GP at home... he said asthmatic bronchitis (never been an asthmatic...).  Went to a new ENT, he wrote a prescription for a head CT, and suspected some strange sounding disease called Wegener's Granulomatosis.  "Don't google it" he warned.

But of course I googled. And I knew in that instant that he was right. There it was- every symptom, spelled out, in haunting truth.  My breathing got worse. I was sleeping 21 hours a day.  My mom brought me to a pulmonologist who did a new chest x-ray, demanded a chest CT, blood work, heart monitoring, etc.  He told my mom to find an oncologist.  Chest CT showed my lungs were full of obnoxious tumor-like masses... Bronchoscopy was scheduled, I was too unstable for the procedure, earned myself a miserable week-long hospital stay... bronchoscopy was inconclusive.

Then on Friday, March 13th (I had really bad luck with Friday the 13ths in 2009) I started a daily regemin of 150mg of Cytoxan and 60mg of prednisone, coupled with antibiotics every few days and calcium and folic acid galore.  On June 11th, I was proclaimed to have a less-active disease and was taken off the fertility-killing, bladder-cancer-causing Cytoxan and switched to Methotrexate, which I've been on ever since.

There's one thing I've never been able to do, and I don't know if I ever will. 
I refuse to give up my old life. My normal life. The life I was finally, head-over-heels in love with.  The beginning of my junior year of college was perfect. I was happier than I ever remembered being. I had friends, I had a purpose, I was just happy.  Plain and simple. I had no problems.  I had a future filled with unlimited possibilities and a never-ending appetite for success.  I had control of my destiny, Fate was finally on my side and karma was leading the way. 

Then in a few short weeks, all of that was taken away from me. The hardest thing I've had to deal with is slowing down. Physically, I can't keep up with the way I used to live my life.  Emotionally, I'm furious with myself for not being able to do what I want to do.

No one in my family really understands these feelings, and lately they have me feeling really far down in the dumps.  Couple my frustrations with living with a chronic illness that will never go away, that leaves me scared every day that I will flare and relapse... throw in the fact that I don't have a permanent job, I'm doing everything a full-time teacher does for a quarter of the salary with no benefits and no health insurance... I'm living at home, stuck in my mother's house, with no freedom, no wherewithall to get up and leave... I'm single, and I hate it, especially since it feels like EVERYONE IN THE WHOLE ENTIRE FREAKIN' UNIVERSE IS GETTING ENGAGED OR MARRIED OR PREGNANT.

Tick, tock, tick tock. I hear you biological clock. Screw you.
I see you hiding in the corner over there, bucket list. Go away.
Facebook news feed proclaiming all the relationship goodness for everyone else but me- damn you. Damn you facebook for making me feel like I am the ONLY one who didn't get what she asked for from Santa this year, what she spends every 11:11 and eyelash wish on... 

I'll be 24 in 127 days.  I'll be a quarter of a century old in 492 days. Today, on Christmas day, do you know what I thought about? How this wheeze in my chest is getting worse, how the joint pain in my hands and in my back gets worse everyday... and how the anxiety is building in anticipation of my chest CT on Wednesday morning.

Bah humbug.
This is a pointless rant and it is filled with frustration and anger.

I really hope that 2012 brings me a strong, loving relationship, a year without symptoms and an inactive disease (drug-free remission is more than I can ask for), a permanent job with benefits and sick leave and paid vacation time... I hope that I can find a way to get to the VF symposiums in Chicago and in Atlanta in April and July...

I hope I can find that happiness, that spark that I used to have. I miss the old me, and most days, I'm afraid she is gone for good.

P.S. I e-mailed my mom the link to The Spoon Theory.  Let's see if it does me any good.

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