Friday, January 13, 2012

I believe in Tim Tebow.

I'm trying to draft a letter to this miracle man.

Not a miracle man for his talents on the field, but for his pure heart.

Before the Broncos-Steelers game, Tim met with Bailey, a 16 year old with Wegener's Granulomatosis (yay a fellow weggie). Now Bailey has suffered far more than I ever have- she's only 16 and she has had over 70 surgeries. She has lost a lung. But she still pushes on, and now she has someone who is inspired by her- Mr. Tebow.

Why can't there be more people like Tim Tebow in this world? He is the kind of role model I wish my students would look up to.

Believing in Tim Tebow by Rick Reilly, www.espn.com

Take a look. I wish I could hug him and tell him thanks for everything he has unintentionally done to raise awareness for Wegeners.

Sunday, January 1, 2012

How not to start off your new year:

1) By getting back a paper from last semester, filled with nasty comments by your professor, to realize that if you had gotten 2 more points on your paper you would have gotten an A- in the class instead of a B+.

2) By going through caffeine withdrawal, after realizing the only thing you drank yesterday was the equivalent of 6 cups of coffee.

3) By staring blankly at your lesson plan template, not having a single clue about what to do with your class who will not want to be back in school.

4) By not knowing what to do about Grad School (I seriously don't know what to do and it is becoming a major problem in my life. I need help!)



I'm trying to make a conscious effort to put 2011 behind me, because it was such a difficult year, but I really am struggling with this. It does not help that I feel asleep thinking about someone who I shouldn't be thinking about. First dream of 2012? That it was me in the Hunger Games, scared, alone, and untrusting of everyone and everything, hoping that I would make it home alive.


Cool, subconscious, really cool.  Thanks for being such a pal.

Tuesday, December 27, 2011

TGIV- Thank Goodness It's Vacation

This morning (rather late afternoon, since it is vacation and that means I don't have to do anything in any amount of time), when I showered, I felt it.

It being that ugly, smoldering, waiting for the general to give the go on the assault on my body, Wegener's. 

When I breathe, my chest is tight. Right up at the top, near my sternum.  I've been wheezing a little bit- sort of funny sounding noises, especially at night.  I just feel off.  My hands, after being in agony for two days, have finally started to calm their little selves down enough so that I can resume typing and resume crocheting without wanting to amputate my digits with a butter knife.

I go for my CT tomorrow- a follow-up CT- and I'm getting nervous about what will show up.  If the CT shows nothing, that means something else is wrong (yay... NOT).  I guess the good news is that if there is something wrong, my new (knowledgeable expert of a) doctor and I can start getting paperwork rolling to have me approved for Rituxan.

Funny thing is, my doc said all he has to say to get me approved is "that I am planning on trying to get pregnant within the year".  Not that there is the remotest of possibilities there, but still.  It makes that clock tick louder and louder in my ear.  Le sigh. 

I think I'm going to put my hoodie back on (freezing again, what else is new?!) and crawl under my blankets and read.  I've had enough paperwork this morning, even though there are mountains of things to go through still piled around my house. 

Ugh. And laundry.  The Mt. Everest of my vacation.

Sunday, December 25, 2011

Rant.

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.

Sunday, December 4, 2011

Stressed and second guessing.

I don't want to study for my linguistics midterm. I have no clue what any of it is about and quite frankly, I don't even care! I just want to get the whole class over with.  I've gotten on 3 out of 4 quizzes an A, a B, and a C.  I got an A- on my presentation. The only things left are the midterm and the error analysis paper (shoot me) that are combined worth 55% of my grade. Fail, fail, fail.

I'm stressed. I'm trying not to be stressed, because I know what stress can do to a person with WG, but seriously... enough is enough!

I've considered leaving the school I'm in, several times.  The commute is rough- 1.5 hours each way.  Most classes don't get out until 9:30 or 9:40, so there are nights that I don't get home until after 11pm.  Not exactly conducive to my schedule.  I try to be up by 5:30am when I have work because I am so slow in the mornings that I need a long time to get ready.  Lately I have to get up earlier because my hands are in so much pain that to brush my teeth feels like I'm being stretched on a medieval torture device. 

I originally started in the MSeD Literacy Program.  I have always been exposed to literacy.  Undergrad we took 6 literacy classes, 1 math, 1 science, 1 social studies.  After 12 credits in Literacy as a graduate student, I've realized I haven't learned much of anything.  So I switched to TESOL.  After 8 credits in TESOL and teaching ESL this year, I'm starting to think that ESL isn't the right path for me either.  There is too much pressure and stress from the city DOE to bring these non-native English speakers up to snuff in too short a period of time.  I cannot deal with that kind of stress for the rest of my career. 

The linguistics class that I am in now has seriously made me reconsider just about everything I thought I knew about myself as a teacher and as a student.  I'm trying to ignore the fact that I feel stupid and dumb every class just so that I can get through my test, but it isn't working. 

I'd much rather think of a position title for myself in the Wegener's Granulomatosis, Inc. group.  Far more fun and more referential to my own life.

Forget phrase structure and the non-intervention principle and morphemes and violated semantic features and phonological rules and schwas and phonetic transcription... not interested.

I have Books 2 and 3 of the Hunger Games series sitting on my desk, waiting to be read. But I won't read them until I finish all my work for the semester. I know if I start them, I won't put them down until I'm done.

Then I will really fail everything this semester.

This is quite possibly the most boring entry I've ever blogged.



P.S. Anyone know how to use google pages? I need to create my own website for my class and I have no idea how to edit the templates. 

Sunday, November 20, 2011

Dear, sweet friend of mine... watch over us.

This morning, when I sat down at my computer with my coffee and my bagel, I intended on catching up on some silly facebook games and e-mails.

Instead, what I found was something that broke my heart.

Last night, a friend of mine (whose name I shall not write) passed away due to complications from a form of vasculitis. She never even knew what she had- because her doctors were far too stubborn to consult with a specialist (much like another doctor I know). Her untimely death comes as a shock, and my heart aches and grieves for her and her family.  She is the first person I know to pass away from vasculitis, and her passing is a sobering reminder of the life-threatening disease that none of us ever asked for... may we all continue to see another day with the reminder of our friend in our hearts.

She would have been celebrating her 26th birthday this February. 25 years young, and taken from this earth.  My friend was nothing less than graceful in all that she did, what she wrote, what she said, and her compassion towards others was something to be admired and respected.  She was always our booster girl, our cheerleader... she vented when she needed to, but always saw the silver lining, always saw the glass as half-full.

Though we never met in person, we talked many times about the difficulties that we face in our lives because of our illnesses.  She was the light we all wished we could share with the world.

Today I wish that she were still here to share that light with the rest of you.  Her beautiful spirit will live on in every life that she touched.

Rest in eternal, pain-free rest my dear friend.



It always seems that those who bring the most light to the world are taken from us too soon.  Not a day will go by that I don't think of my father, my cousin, and my friend. May they give me the strength and courage I need to survive each of these dark days.

Sunday, September 11, 2011

I'm a working girl now!

(I'm typing most of these entries after the fact, so they are not in chronological order- ahh- but I don't know how to backdate entries.)

I wasn't nervous starting work this year. I was cool, confident and collected, and ready to prove that I know what I'm doing.

Then we had two PD (professional development) days. After the first one, I realized that I was going to struggle a little bit, in terms of "catching up". I know the theories and practices that work, but I don't know the bureaucratic side, the "do this or our school will get shut down" side of things. The morning of the 2nd PD day, the principal asked, "How many of you slept well last night?" Mostly paras raised their hands. Then he asked "How many of you had nightmares last night?" A LOT of teachers raised their hands. I didn't raise my hand for either- I needed choice c- "How many of you didn't sleep at all last night?". All I did was lay awake and think about all the things I wanted to do, how they were going to correlate to the CCLS (Common Core Learning Standards), and how I was going to start the absolutely daunting task of trying to bring my class up to the 5th grade level.

I work mostly with ELLs- English Language Learners.  The majority of this class doesn't speak English as a first language, they count among them 6 different languages/dialects- Urdu, Arabic, Haitian Creole, Punjabi, Bangla, and Spanish. I have 5 that barely speak English. I speak none of those languages, but communication isn't the issue in our class. It's the vocabulary, and the prior experiences/pre-requisite knowledge. Most of them read on a 2nd-3rd grade level, with a handful on 4th grade, and maybe 2 on 5th grade level. 2 out of 29.  I obviously have my work cut out for me.

I started out this year with 25 students. Then 6 new students from other schools showed up. I have no shows- which may bring the roster down. One student was already discharged, but who knows about the rest of them. Some said they were going back to another country, some said they were moving, others had parents who wanted them in a Charter School, others just haven't shown up yet, but were chronic absentees last year. If the no-shows don't show up by Tuesday, my register will go down to 24, which is pretty incredible, given the number of students in the other classes.

My resources are limited, which makes me nervous. The library in the classroom has about 20 books that are lower level books, 3rd-4th grade level. These kids don't have books at home, they don't have library cards, and I have nothing to offer them. How am I going to teach them to read? How will they built up stamina reading at home each night?

How am I going to do this?!