Please Stand By...

Tuesday's "What if" post is on a slight delay today due to massive headaches and a trip to my specialist. I try to have my posts scheduled because this happens more frequently than you would realize, but I've finally caught up to myself here...

Hopefully I will be able to share this with you later on tonight. For now, have fun adjusting your screen color with this:

It's Time to Learn About Intracranial Hypertension

It may come as no surprise to you that I have Intracranial Hypertension (IH), as I have proudly posted my picture on Facebook as one of the many faces of this disease, however, some of you may still be wondering what the heck IH is! Which is more than understandable as I (and some of the other doctors in the hospital trying to figure me out) only came to learn of it as the diagnosis was read!

IH Is A Rare Disease
 
Intracranial Hypertension is a rare disease.

A disease or disorder is defined as rare in Europe when it affects less than 1 in 2000.

A disease or disorder is defined as rare in the USA if it affects fewer than 200,000 Americans at any given time.

source: http://www.rarediseaseday.org/article/what-is-a-rare-disease

This is a significant piece of information because rare diseases, for obvious reasons, do not receive the same kind of attention and, more importantly, research funding as more recognizable ones. This leaves patients with limited treatment options and knowledgeable professionals to help in their time(s) of need.

IH is Life-Altering

As most chronic diseases, Intracranial Hypertension is an everyday presence in each patient's life. The symptoms include:

• severe headaches and pain, in general, 
• tinnitus, 
• nausea and vomiting, 
• disorientation, 
• dizziness, 
• pins and needles (more like invisible evil elves stabbing me with knives, but, in general, you get the idea), and 
• visual disturbances (black outs, sparks, double-vision, visual auras, etc). 

 The final symptom is the most frightening, because, if left untreated, this disease can lead to blindness due to optic nerve swelling and damage.
The problem with all of these symptoms is that every single one is invisible. I have to be honest, before I was hospitalized and diagnosed I was getting pretty worried that I was losing my mind! I looked fine to everyone else (until I started grimacing from pain or squinting from vision) and felt worse than I ever had in my whole life. This is a common complaint I hear from fellow IH-ers, as well. Even now, everyone I see can't wait to tell me how amazing I look and I'm sure, to many, it is a sign that I must be so much better, but this disease is tricky, invisible, painful and extremely lonely. We look like we can do all of the things we always could do before, but sometimes that pain is just there. Life has changed, we must adapt. We'll do things, just do them differently. IH-ers better than me have continued in their day-to-day with amazing adaption (I did that for too long with my crazy spastic colon - once IH got added to the mix, my days of deception were over!).


The Cause(s) of IH

Intracranial Hypertension is an increase in pressure in your head due to CSF (cerebral spinal fluid). You see, everyone has CSF flowing in and out of their heads all day long - it's a natural body process. Those of us with IH either make too much CSF or our body just doesn't get rid of it fast enough! The jury seems to be out on which one of those it is. Either way, it leads to all of this fluid in your head, squishing up everything because it doesn't seem to know where to go! I have what is called Idiopathic Intracranial Hypertension, where "idiopathic" stands for unknown origin. Some people can get Secondary Intracranial Hypertension as a result of a number of different conditions or diseases.

I think it is very important to note that IH can happen to anyone. While there is a prevalence in overweight woman of childbearing age, I am heartbroken to inform you that there has been findings in children (I really, really, really don't like that idea AT ALL), women of all shapes and sizes and even men! I worry that the idea that it is only prevalent in one particular group leads to many going undiagnosed for far too long!


IH NEEDS YOU!

My ultimate reason for writing this post today is to spread the word about Intracranial Hypertension. The IH community needs everyone to know a little bit more about our disease and to get some buzz going. Right now the treatments for the disease lead to more side effects that still make day-to-day existence not so bearable.

Here are some suggestions for what you can do for IH this month (did I mention September is IH AWARENESS MONTH?!):

• Donate to IHRF - The Intracranial Reseach Founation is the only non-profit in the world devoted to supporting medical research for chronic Intracranial Hypertension (in other words, THEY ROCK!!).
• Check out the IHRF Facebook page to see the wall of faces of IH, just to get a feel for how many people can be affected by a "rare" disease.
• Read a Book Where the Lead Character has IH - I truly can't say enough about "Excuse Me, My Brains Have Stepped Out" by Pandora Poikilos, but go ahead and follow the link if you want to read my review!

To My Fellow IH-ers

I wish you pain-free days, and if you are new to this mysterious club and stumbled upon this post on your quest to find answers, please do not hesitate to e-mail me with your questions. I remember the initial months of my quest for answers, for anyone in the world to know what I was going through. We out here, all over the place! YOU. ARE. NOT. ALONE.
 

Related Posts:
Think IH on Rare Disease Day
A World Without Books 
Sick Days
 

Sick Days

I had different plans for what I would post today, but fate did not swing my way. Today is a sick day. In fact, as I am on medical leave from my job, I guess it would be more appropriate to call today a sicker day, since I am pretty much always somewhere on the spectrum of sick.

Today I've traded pajamas for sweatpants, the bed for the couch and sleeping with an uncomfortable relaxed looking pose that is filled with dread. It sucks here and I wish my body would just tell me what the heck it wanted, what it needed to feel, finally at ease. This hasn't been the greatest week, health-wise for me and I'm starting to feel a bit beat up about it, so it is time that I recall what strength can be drawn from the fight through this poem from Douglas Mallock:

Bold Tree by zachstern

The tree that never had to fight,

For sun and sky and air and light,

But stood out on the open plain,

And always got it’s share of rain,

Never became a forest king,

But lives and dies a scrawny thing.

The man who never had to toil,

To gain and farm his patch of soil,

Who never had to win his share,

Of sun and sky and light and air,

Never became a manly man,

But lived and died as he began.

Good timber does not grow in ease,

The stronger the wind, the stronger trees

The farther sky, the greater the length

The more the storm, the more the strength,

By sun and cold, by rain and snow,

In tree and men good timbers grow.

Where thickest lies the forest growth

We find the patriarchs of both.

And they hold counsel with the stars

Whose broken branches show the scars

This is the common law of life.

                     Douglas Mallock

So, here's to the wonder of my good timber growth and to the days in my someday futur where I can hang a swing from them and just be!

A World Without Books

This post is in conjunction with the Blog-A-Licious Blog Tour a fantastic blog hop that brings together bloggers of all genres, backgrounds and locations. I am honored to be a part of it and ecstatic about the company I am keeping on this tour (there are 30 of us!!). In today's hop, the blog featured before me is the inspirational Everyday Gyaan. The blog featured after me is the artistic Totsymae. Do stop by and say hello to these two bloggers and take the tour - some of us are even having giveaways and contests! Happy reading!

Join Me!
Blog-A-Licious Blog Tour

Apocalypse of mine

Without the tales of wonder, horror, fantasy
Or even truthful knowledge for me to gain
Reader is how I once defined myself
Learner is how I carried myself
Drained, now, of the source of my bliss

Whispers of a memory
Is all I have left of the
Touch of the pages, the cover, the dog ears
Held once in these hands before these eyes
Opened wide to embrace your
Universe in
Totality

But before you leave me forever
Our time may not be through
One hope, one beacon, one healer found me
Kismet that he should do so today
Stopping me from embracing with any finality the world without books I have lived in.


On June 10, 2009 I was diagnosed with a rare disease known as Idiopoathic Intracranial Hypertension. Among other things, the disease has greatly affected my vision causing this once voracious reader to be unable to read anything off of the printed page. While technology and audiobooks have helped me maintain sanity in the absence of my life-long friends, my soul has ached for the touch and feel and experience of a book once again.

This week, as I confirmed my attendance in this blog tour writing about this topic (that hit awfully close to home), I had what I believed was going to be a routine trip (of the countless I have had over the last two years) to my eye doctor. When I gave him my update, regaling, once again, my tale of woe with the printed and written word, he said we might have a solution. Time will tell, but I didn't realize until he said it, how I had given up that which I held so dear to my heart. When it came time to tell my husband, I couldn't stop crying. Ladies and gentlemen, I may be freed from this dystopia - I may have been granted access to the portal sending me out of this WORLD WITHOUT BOOKS! 

Thank you, Dora for the beautiful timing of this tour as it has given me the perfect space in which to express my very new and unexpected emotions!

My Teaching Appreciation Day

I loved more deeply than I ever thought possible. I gave my everything - my heart, my soul, my free time, my thoughts, my money, my dreams, my creativity; my best. Every day I showed up ready to share all that I knew and I prayed that they could understand. This is what I mean when I say I was a teacher.

My students weren't my biological children, but they were all my kids. I cried for them and with them, I fought for them and against them, I cheered for them and supported them and I held their hands as we walked through the dangerous valleys and peaks of high school mathematics.

It was my calling. It was what I was put on this Earth to do. I know this because it was amazing,  I was amazing. Not every semester, of course, or with every class, but when the chemistry was right I simply could not deny that I was walking the path God had set out before me. It was beautiful, it was euphoric.

No one could stop me from pouring my entire soul into every lesson, every question, every activity and every child on my path. I would walk around the hallways with hand-written math problems hanging around my neck, I would invent fictitious civilizations that we would have to save with our math, I would stay up all night answering e-mails, updating blogs or websites and printing full-color worksheets, homework calendars and "goodies" for my kids and I would wear every ridiculous, nerdy math t-shirt I could get my hands on (or create!). My goal was to shred the fear and anxiety surrounding the subject I had come to love and to build a community of shared learning where we could all discover new techniques in problem solving. 

There were connections outside of the classroom as well. I tutored after school, chaperoned the prom, played paintball, bingo and dodgeball with students on their Senior trip, and spent countless days of my life at all types of sporting events (including the wildly popular Thanksgiving Eve Basketball game) and supported our theater and music program each season. And then there were the clubs... of course I advised the Math Tam/Math Club for years, but then there were others - Asian American Awareness Club, Karma Club, Anime Club, Animal Rights Club and the funniest one of all: Video Game Club.
  
At the end of the year, when the state tests came, I would call every single house of every single student I had to tell them their grade - good news or bad news - and have our last conversation before summer. It was the last of many, because I had the annoying habit of calling up the houses of my kids (especially the forgetful ones) for all types of things, "Hey, how's that homework going?" or "Any questions about tomorrow's test... Yeeeess, the test is TOMORROW," or, my favorite, "Hi Mom/Dad/Grandma/Grandpa, did your child tell you how awesome he/she was in class today?"

Teaching is the single most rewarding profession on this planet. The only thing that I can imagine holding a candle to it is parenthood. I am proud I was a teacher. No, let me rephrase that: I am proud that I AM a teacher ~ whether I am ever healthy enough to be able to re-enter the classroom, or achieve the greatest I once so mindlessly lived in, I don't believe anything can take away the teacher's soul within.


This post was written for a RemembeRED Prompt.

"Tell the story (without any trivialization or modesty) of something in your life that you are proud of."

Look easy? I'm guessing it will be a bit tougher than you think.

We are so used to downplaying ourselves, of apologizing for pointing out our own accomplishments. And? We'll have none of that here!

Your word limit is 700 words.

Someone Stole My F-ing Car

Here I am locked in this office
chained to these keys
staring into a screen swearing it is my fucking window to the world...

But I know someone else is driving my car,
out on the open road
with windows down, music blaring and winds blazing through his hairs.

What the hell happened?
That's my car. That's supposed to be me.
Running from the fury and enjoying the freedom of the outside.

This is abuse of the worst kind - it is self-mutilating.
I handed over the keys, I said, "Drive for me, please."
And, at the time, I meant it. At the time, I needed it.
But honestly I let this shit go on too long.

I want to fucking DRIVE.

Now we've had a fight and HE gets to flee?!
Oh NO... that is simply UNacceptable.

Stuck here with my limited vision,
my god-damned limited health
and with it I can't even express fury the way I used to.

Justice is lost...

I am limited even in my humanity.

Is there anything else that can be taken?


The tears flow hot and heavy.
I lost this battle, but it's not with him.
Now I know it was never with him.
I still hurt over my body's betrayal to this soul....

So much more to heal,
still battling with the fact that, "I can't drive,"
Go on... say it again, the dogs aren't listening,
"I CAN'T drive."

You know why, too, of course.
"...it isn't safe..."
But, Nicole, that doesn't mean you can't LIVE.

Now remember why you love him,
remember what the hell HE'S been through.
He's just about the last person on the planet you should be fighting with.
Let him drive,
he'll be home soon
and he'll be bringing back your car.


This post was written for the Red Riding Hood Prompt. This week's assignment was:

This week, we want fightin' words.

Write a piece about a fight. What happened? Why? Who "won"? What were the repercussions? 

I actually had half of this written raw, in the middle of a fight (as you can probably tell) with no intention to post it, but when I saw this prompt I thought it must be kismet.

Think IH on Rare Disease Day

I was in high school when I read Flowers for Algernon and the story absolutely broke my heart. I've seen the movie, but film seemed unable to capture what Charlie's broken down language could convey. Yesterday, I had a "Charlie moment." I've decided that's what I am going to call them now, since a "senior moment" doesn't quite fit a 34 year old, or the nature of the event. Nope, I gained a great knowledge, used it, flourished in it and now, sit back, helplessly as I watch it all slip away...

It began earlier this week when my husband and I were watching the movie 127 Hours in preparation for the Oscars this weekend. My husband asked, "127 hours - how many days is that?" This is a simple question. He may have even had an answer before I said anything, all you have to do is divide 127 by 24, or decide through multiplication (or even repeated addition) how many 24s it takes you to reach 127. I said, "It's more than five days, but maybe even more than six. I don't know. Let me think about it... Could it be seven? I don't think it is seven. I think it is more than six, though."

I honestly don't think my husband even cared anymore, but throughout the movie I was multiplying 24 by six, then by five, then by seven... all in my head and never able to get an answer. I gave up and watched the movie. A day passed. Then last night, while we were driving home I said, "127 hours is five days with seven hours left over. It is not even six days. What was I talking about?" I couldn't believe this was happening to me again. I continued, " I feel like Charlie, from Flowers for Algernon."

My husband is an English teacher, so he didn't need much further explanation. You see, by career, by passion, by life calling, I am a math teacher. I have been since I graduated undergrad with a BS in Mathematics and Education. I have taught pre-algebra, algebra, geometry, trigonometry and advanced placement statistics over the course of the last twelve years. On my desk here in my office is an article from a 2001 edition Congressus Numerantium a Canadian Mathematics journal, that I was a co-author on. It goes without saying then that I should be able to tell you how many days pass in 127 hours, and I should be able to tell you quickly. However, in the last year, simple calculations seem to elude me.

It should come as no surprise to you that I am on medical leave from my teaching job, or that yesterday I began the process of filing for disability benefits. I can no longer do my job, because like Charlie and Algernon before him, I am losing the great intellectual gift that was once bestowed upon me. Whether it is due to the medication I have to take to keep my Intracranial Hypertension in control, or it is as a result of any damages the pressure may have had on my brain before I was I diagnosed, I have difficulty with some of the most benign tasks related to my profession.

This is merely one of the personal obstacles that IIH has placed before me. There are numerous others and every patient with IH has their own story to tell you. There are a lot of us out there, not as many as some other diseases and, at times, that puts us in a precarious situation. For this, IIH is deemed a Rare Disease and, in turn, does not receive as much attention as other diseases. The type of "attention" we patients desire is not necessarily some sort of media-blitz or lots of people suddenly knowing what IH is - the most desperately sought after attention we seek is that of the researchers. We would like the men and women in medical research to take some time out for IH to find better treatments, preventions, or, we hope, someday, to find a cure.

This picture was created for IHRF Wall of Hope Project for Rare Disease Day 2011.

So while you may have never heard of Intracranial Hypertension (IH) before reading this, you can know at least this for now:

• IHave it,
• IHate it, and
• IHope for a cure.

It's not great, it is life-altering and can sometimes, like all chronic conditions, be a bit lonely. You should also know that February 28th is Rare Disease Day, an annual, global event to raise awareness about all rare diseases. I kindly request that you take a moment to spread the word about some rare disease close to your heart this year, and if you have none, then tell someone about IH. If you want to learn more about it, check out the Intracranial Hypertension Research Foundation - the only non-profit dedicated to raising money and awareness about this disease.

Just think IH for Rare Disease Day!

If you are a fellow IHer, well then, my friend, I know you will already be thinking IH for Rare Disease day, so I'll leave with something more: I wish you a pain free today and tomorrow!