"The fault, dear Brutus, is not in our stars, But in ourselves, that we are underlings."

So of the whopping 5 people who read this blog, 3 of them know how addicted I am to reading.  I'm just as passionate about writing, but lately- nothing. The Muses have not thrown me even one small nugget of linguistical (Yes, I made that adjective up) nourishment.  I'm so frustrated because I really wanted to be working on something publishable this year and I have NADA.

Back to the reading.  One of my best friends is addicted to reading as I am.  She is an enabler of my addiction to books and I devour just about everything she puts on her Kindle.  I finished one book (Sad Desk Salad) and started another (The Fault in Our Stars) yesterday.

Well holy genius batman.  I am in love with this book*.  John Green is exactly the kind of writer I always wanted to be, with all his lyrical bantering between characters and perfectly placed pieces of pop culture and literary references.  Just. So. Good.

This book is the kind of book that makes you want to fall in love despite the unbearable sadness of the plot (teenagers with cancer).  It's the kind of story that makes you question everything you think you know and for someone who lives with an incurable, chronic illness this hits especially close to home.

Case in point- My own body attacked itself.  So the WG is my own body's fault, it is a part of me, I'm a part of it.  So does that mean the I am WG?  Or that WG is me? This is something I continue to struggle with 4 years post diagnosis.  I don't want to be defined by something I don't have any control over, but the fact of the matter is that WG changed my life and rocked me to the core.  I've clearly had to adapt and change over the past few years to deal with everything living with vasculitis has brought to me.  Some days I want to hide the fact that I'm "sick".  I don't want to talk about it, deal with it, think about it.  Other days I am proud of the fact that I've dealt with this for so long, mostly on my own, and I want to raise awareness and educate as many people as possible about this dastardly disease.

Lately I've been torn about hiding it, permanently.  This Rituxan has been a game changer, I haven't felt this good in a long, long time.  There are stretches of hours where I don't even remember that I'm "sick".  I especially want to hide it when it comes to the (lack of a) relationship front.  I feel compelled to share this part of my life because it really has made me who I am today.  But everyone runs.  No guy wants to deal with this- the fact that this could be a forever problem, the fact that I might not be able to have babies, the fact that if I flare I go back on prednisone and it wreaks havoc with my mind and my heart and my weight.  Part of me says "Well, why should they deal with this nonsense?"

And then the other part of me says "Well if no one should have to deal with it, it is a good thing you are a teacher because you won't ever have babies of your own or a boyfriend or a husband".

So there's that.  I haven't finished The Fault in our Stars yet, so I don't know how the story will turn out.  I did get to a big plot twist this morning and I'm not emotionally ready to finish the book.

I'll leave you with a quote that hit particularly hard this morning.

"I'm in love with you," he said quietly.
"Augustus," I said.
"I am," he said. He was staring at me, and I could see the corners of his eyes crinkling. "I'm in love with you, and I'm not in the business of denying myself the simple pleasure of saying true things. I'm in love with you, and I know that love is just a shout into the void, and that oblivion is inevitable, and that we're all doomed that there will come a day when all our labor has been returned to dust, and I know the sun will swallow the only earth we'll ever have and I am in love with you."

        ~ The Fault in Our Stars by John Green ~








*NB: Books are so much better to fall in love with than humans.  They don't get vasculitis, or cancer, or end up in relationships with people who don't deserve them.

What does it mean to have strength?

A friend of mine said to me last night “Wish I had your strength”.  I’m sitting here, on a Sunday night of a long weekend with nothing to do except watch old episodes of Parenthood and I find myself thinking, how strong am I?  Does battling a chronic, rare, incurable disease make me some kind of superwoman? 

I never thought it did.  After I got sick I did what I had to do.  There was never really another option.  Fight through it, get better, go back to normal.  Don’t get me wrong.  There were days when I wanted nothing more to give up.  I distinctly remember the first few days I had to take the Cytoxan, and heaving up everything in my stomach.  After that, it was just bile and sadness.  It always happened when I was home alone, so there was never someone to hold back my hair or wipe my head or pass me a washcloth.  I watched my hair fall out, I watched my face change because of the prednisone... but I did it on my own because I didn’t know any other way. 

So here I am watching the middle of season 4 of Parenthood, and (spoiler alert, sorry) Kristina is pale, profusely sweating, vomiting and lying on the bathroom floor because the chemotherapy she takes to get rid of her breast cancer is dissolving her from the inside out.  That only lasted two days for me, and it was nowhere near what was depicted on this television show that makes me cry every time I watch it.  Towards the end of the episode she and her husband are in bed, and they are so clearly supportive of each other and so devoted to each other that my heart aches… because I wish I had that when I first got sick.  I wish there had been someone to help me through it. I wish there was someone now who was willing to take the time to understand my journey and to stick with me for the rest of it.

My four year diagnosis anniversary is coming up.  I’ve passed the four year “remembrances” of the first ear ache and the fever that sort of set me spiraling downward.  Two weeks ago, after my third round of Rituxan I came to a rather sudden realization.  I felt so good after that infusion that I felt normal.  That elusive normal that I never thought I’d get to again.  That realization came in stark contrast to the previous week’s infusion when I cried and felt my heart break a hundred times.  Why?  Because I was alone.  Everyone else at the infusion center had someone with them, except for me.  There was no one to talk to, to sit with… I was, yet again, alone.  Not that it was anyone’s fault, after all, how could I expect someone to sit with me for 8 hours on a Friday?

Would it have been fair for me to ask someone to come with me?  Part of me says no, because it would be intruding on someone else’s life, and their time, and their commitments.  But I suppose it also goes to show that there isn’t anyone in my life who would have felt like it wasn’t an intrusion on their time or their commitments.  

Is that what makes me strong?  Not being selfish?  If that’s the measure of strength, then there are people stronger than I am.  Take my friend for instance- busting his butt to make life easier for someone who is sort of just piling the stress onto his life.  Yet he works through the exhaustion and the stress and what I can only imagine to be anger and sadness because he isn’t selfish.  

Is being afraid to ask for support (or is it that I’m incapable? I’m not sure) what makes me strong?

Is being single what makes me strong?

I’ve spent four years being strong and not once has anyone really let me break down over everything I’ve gone through.  Part of that is my own fault, I don’t know how to open up because past experiences have shown me that opening up made me someone who complained all the time.  But shouldn’t my friends know enough to sit me down and make me talk about it?  Shouldn’t my family know that I need a shoulder to cry on?  I don’t know.  The social stigma of crying is that it is a weakness.  So I cry alone, usually at night.  Sometimes at lunch, when I am alone in my classroom. 

But my god, I am tired.  I am tired of being strong and I’m tired of crying alone.  

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.

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.