Brave

Sometimes even the things you want more than anything are scary.

Petitions.

Filing.

Dissolution.

Cutting apart what you thought held you together for a long time.

But it didn't. It didn't hold you together. You are the glue that holds you together. It's always nice to have someone to lean on. It's always nice to have that support, but you are the one who gets out of bed every day and puts one foot in front of the other.

No one else can do that for you.

And the future is so bright. Anything is possible. Absolutely anything.

Life Happens

Today I was at the store. I saw a gen. ed. teacher I worked with my first year out of college. She was with her husband, adorable little baby, and special needs son. Now I didn't even know this woman well enough to say hello, but it got me thinking.

Life happens.

All of your best laid plans can be disrupted in a minute. And all you can do is to deal with it.

No one asks for an IIH diagnosis.

But you can deal with it. I promise.

Don't let the forums scare you. Don't let the side effects scare you. Don't let the threat of surgery scare you. Just live your life the best you can.

Moments

For some reason I feel the need to hold on to certain moments lately. I feel like I have to tuck them away somewhere or they will be gone forever.

Promises whispered in the dark.
An arm around me in the kitchen.
Flowers on a car seat.
Eyes constantly scanning the crowd for me.
Every single ambush.
Super cold cups.
The smell of metal on hands.

I have this feeling of sand slipping through my fingers. I worry that one day I will look down and it will all be gone.

Sometimes you have to walk uphill and it is no fault of your own. Sometimes when you're used to vacant eyes and empty promises the real thing seems like a mirage. Sometimes you get too caught up waiting for the other shoe to drop. Sometimes you need to make up for someone else's breach of trust.

That is not fair.

But thank you.

Reminders

Sometimes decisions really make sense.

Things totally happen that remind you of all of the reasons why you did something in the first place.

It is depressing and life affirming all at the same time.

I have had a sore neck today. Stupid sore neck. I don't like it.

Today I drew a chalk picture. It was Piggie. She is cute.

Change

A week ago today I moved out of my house.

I am not going to air my relationship dirty laundry here, but I am not going back.

Since leaving I have not had a headache.

I have people to thank. Prom Date, TJizzle, Mom, Step-Dad, Mrs. Rocketship, the Doosh. <3

Happy Mother's Day.

Growing up

I don't buy any of that new age crap. I typically don't go in for inspirational sayings. I think when shit gets tough either you suck it up and change something about it or you stop complaining.

I have always picked my friends with pretty much one things in mind, do we laugh? If the answer is yes then for sure we can be friends. If the answer is no then we prolly aren't going to get along. I know, I'm not very picky. I can take a lot of shit. I can be pretty much whatever you need me to be, as long as you make me laugh.

But something about that has changed. I don't know if it's the diagnosis or simply a result of getting older, but I have found myself craving relationships that are far more real than that. Friends that will not only talk but listen. Friends who will offer advice and assistance when needed and sometimes just listen to me bitch about what happened that day.

It's required changes on my part. I have had to learn to trust people. I have had to tell people what is really going on and not just the rosy picture that I like to paint in my head. And in return I want friends who will do the same with me. Friends who will trust me with things they keep a secret from other people.

And I feel better. About my life and the scary unknown. I feel like I can face it because it's not just me and Hubs against the world. There are others who will hold my hand and help keep me going.

And there are still those people who I just laugh with. Because they are fine too. There is nothing wrong with that. But I am no longer scared that the people who have stuck around are going to run because I share something real with them because if that happens it is their problem not mine.

: )

Disappointment

Today we learned a hard lesson about disappointment.

Our zoo field trip was cancelled.

It was a depressing day.

Still, it was a good lesson because sometimes in life things do not go as planned. And on those days we have to buck up and continue with business as usual. There may have been a few complaints. And I may have been tempted to throw a kicking screaming fit on the floor. But none of those things happened.

Instead I got to write a paragraph about Justin Bieber with a rather adorable 7 year old.

And I got to eat lunch with a room full of scrubby boys while we watched a panda munch on bamboo.

And I got to swing on the swings during extra recess.

And then the Hubs bought me a new hammock.

So really, it was a pretty good day.

Genius

I have the best job in the world.

Today one of the kids was wearing a sweatshirt that had a missing the zipper pull. We shall call this particular young man Dimples. He was stuck in his sweatshirt so I put a paperclip on there so he could get in and out. You would have thought that I split the atom.

I felt pretty awesome about myself.

I forgot to take my pill today.

Never again. I think I have to get a pill case and put one of each in there to keep in my purse just in case. I assume I will have to rotate stock every once in a while.

How long does it take for medicine to go bad?

This week there are only two things I am annoyed about. I think this is pretty excellent.

Happy Tuesday!

The Wait is Over

So the wait is over.

I was not offered the position.

And while I keep telling myself that is ok there is a part of me that is totally not ok with any of this.

I just don't understand how much bad news a girl can be expected to take before she flips the hell out. I found out the answer last night. Three major pieces of bad news in 4 and a half months. That is how much it takes before a girl flips the hell out.

I flipped out.

I never flip out.

Ok, that is a lie. I freak out all the time. But I freak out in private. Typically in my car. Typically because I am jealous of people who can relieve their pain with a pill. Typically because I miss my life before when I felt like a normal girl.

Last night was not in private.


And I try to put a happy face on it because no one likes a cry baby. I don't like a cry baby. I like to make fun of my problems because then they are not so big and scary. It's like imagining a spider wearing polka dot boxers and a clown wig. As soon as you can laugh at it it's not so scary anymore.

So yeah. I thought I was fine because I was laughing. And I am fineish. And I will be finer.

Good things in my life...
The puppies who are snoring next to me.
The husband who loves me
The mom who feeds me
The friends who take care of me
The doctors who are knowledgeable about me
The Stinker and all of the other kids who I already make a difference for every day

Maybe my mom was right. Maybe the universe is trying to tell me something. Maybe I am not done here. Who knows.

The Grind

Back to work today.

Cute kids, funny stories, lots of hugs.

A bike ride down to the pond. A family fishing.

Today was ok.

People with chronic neurological conditions are like 6 million times more likely to become depressed (NOT A REAL STATISTIC). I read that last night when I started to yell at the Hubs about taking care of me. I figured I should look up mood changes because I was having one.

So today I woke up and I made a choice.

It would be a good day.

Important fact... it is not technically illegal to have sex with a dead body in Illinois. They are trying to pass that law now so you may want to get on that.

Changes

We use different language now.

We used to say, when we have a baby. When we have a baby we will... I can't wait until we have a baby because... When we have a baby we should name it...

Maybe it is hormones (I am having a heinous period right now) but I have been thinking a lot about those phantom children. Lincoln who we would have called Linc and Virginia Ann who of course would have had red hair and freckles. She would have been Ginny for short. Ginny Ann. I used to say I was going to dye her hair because I demanded a red headed daughter.

We loved them even before they were conceived.

The other day Hubs said, I can't wait until I'm a father. What a subtle difference. I do not think we will ever have a BABY but that doesn't mean we will not have a child. Now when I picture being a parent I picture a child who is broken. A child who has had a life that they need to recover from. A child who will need so much love.

We have love in spades.

Today was a good day. I finished the third book in the Hunger Games series. They were all excellent. I recommend them. I also slogged through my emails. I completed my Teach for America things. I had floaters. I laid outside in the sun. I snuggled in bed with the dogs.

I have had a long string of good days. I am kind of waiting for the other shoe to drop.

Humping

Wills is out of town. I am tending to her dog. I went over there last night and took the small and fuzzy beast for a walk.

Then I was humped relentlessly.

It was slightly off-putting.

I went over there tonight and it was the same drill only there was absolutely no humping. Now I am worried that I didn't look pretty.

Life Changes

When I was diagnosed I didn't know what it would mean. Since each person is different it means that other people's problems will not necessarily be yours.

What I did decide is that it wouldn't stop me.

So, still with pretty significant blind spots, I baked and decorated 8 dozen sugar cookies with little faces two days after being released from the hospital. To this day I am not sure how some of those little guys looked, but they were made and that was all I cared about.

I refuse to let this stop me and with that in mind I applied for Teach for America.

I haven't mentioned it yet because there really hasn't been anything to mention. I was invited for a phone interview which was rather exciting, but only the first step in the process. So I tried to temper my excitement. Today I found out that I was invited to the final interview. This is a slightly bigger deal. Still, 50% of applicants are invited to a final interview and only 11% are hired. Still, I think it is time to talk about it.

When I applied I waffled between two feelings, nervousness that I wouldn't even be called for a phone interview and then panic that I would be hired. And then I realized...

I would have to find a new neurologist.

That scares me more than anything. The thought of finding new doctors. Leaving my friends, sad. Leaving my family, sad. Leaving my coworkers, sad. None of these things are petrifying. What is petrifying is finding a doctor who knows what the hell he is doing when it comes to IIH.

I am not going to let it stop be though. If I am lucky enough to be hired we are going.

Let's Dance.

There is nothing in this blog post you haven’t heard before.

Considering the great expanse of time and humanity, all the stories have been written, the songs sung, the finer points made, highlighted, underlined and punctuated with an exclamation point.  Dust thou art, and unto dust shalt thou return.

You were born. You fell in love. Your heart was broken. You did something you thought you couldn’t do. You failed miserably. You said something hilarious and forgot about it 10 minutes later. You felt the bittersweet pain of empathy by crying when someone else hurt. You experienced a loss so profound you didn’t know how to cry.

Somewhere out there, in 2005, a 21-year-old named Bridget was diagnosed with Stage IV breast cancer. She was falling in love with a man who would love her back – even through chemo, baldness, clinical treatments, temper tantrums and fear. When she was diagnosed, he told her to put on a party dress so they could go out to dinner and discuss how they were going to deal with it.

If that isn’t amazing enough, Bridget lived in a society that stamps pink ribbons on t-shirts, novelty socks, key chains, and yes, even packaged food. But a few months before her diagnosis, medical professionals told her she didn’t need a mammogram when she found a lump in her breast. They told her it was just fibroma, nothing to worry about.

Only, it was. Her family thought she looked a little yellow when they came for her college graduation. Jaundice and breast cancer that had spread to her liver.

And so, the girly-girl who was so lucky to have fallen profoundly in love was left feeling so very alone as she went to one breast cancer event after another populated by grandmas and the grey-haired. She cried and felt much older than 21.

The general line of her story has been traveled by hundreds/thousands/bajillians of women who loved and were loved but still were diagnosed with a horrible disease at a very unfair time. I like Bridget’s story, though, and I’m still reading it.

Bridget writes one of my favorite blogs, http://www.mybiggirlpants.blogspot.com/

Decades before Bridget was diagnosed, Susan G. Komen was diagnosed with breast cancer in 1977. She decided to get through treatment quickly so she didn’t upset her kids, had a mastectomy, and was told by her surgeon she was “cured.”

Only, of course, she wasn’t. 

As she was slowly dying, she read to children in cancer wards in Houston and Peoria (where she was receiving treatment herself) and created a laundry list of things she would do when she got better: paint the waiting rooms and chemo wards a cheery color, add some classical music, have a luncheon to raise awareness about some new mammogram technology. (Because that’s what everyone wants to discuss over lunch?)

She died on Aug. 4, 1980. Her sister, Nancy Brinker, didn’t just have a luncheon. She started an organization that would host a myriad of walks, races and fundraisers and distribute more than $1.5 billion for breast cancer research, services and advocacy. Brinker had made her sister Suzy a few promises – and kept them.

You’ve probably heard of dozens women who sparked movements that would become profound, cliché, mocked and revered past anything their originators likely imagined. I recently bought Promise Me, the memoir charting Susan G. Komen’s story with the path of the non-profit organization. I’m still reading it.

Susan G. Komen died a year and 20 days before I was born. She died five years, three months and 22 days before youdownwithptc.blogspot.com’s author was born. If you know youdownwithptc.blogspot.com’s author at all, you probably know that 26 years after her birth, the axis of her world shifted.

She befriended me. Wills.

This, too, is a story you’ve heard before.  Two college-educated Midwestern women bump into each other over and over again in a small town. They utilize hyperbole and sarcasm to make fun of everything they think is funny, boring or downright horrifying. Suddenly, they find themselves explaining each other’s jokes to people. 

There also have been a few instances in which I suggested something as a joke, she thought I was serious, and she charged forward with such abandon that I didn’t have the heart to tell her it was a joke. (I’m sure she’s done the same to me. In fact, I know she has. I fall for it ALMOST EVERY TIME. It’s cool.)

Anyway, that’s not really what rocked youdownwithptc.blogspot.com’s author’s world. 

She was diagnosed with Idiopathic Intracranial Hypertension – which essentially means her body doesn’t absorb spinal/cranial fluid as quickly as it should, so pressure builds up and causes all sorts of problems. Untreated, it causes blindness. With treatment, it still causes severe headaches.

Since then, she’s baked cookies. Started this blog. Been interviewed by local media. Brought Rare Disease Day (which, strangely enough, is NOT on Hallmark’s radar) to our attention. There’s been some vague talk about a fundraising walk or Bags for Brains or something.

She’s also spent some time talking about the lack of research focused on her disease, the lack of disease-specific medication or support groups and why she cannot possibly have children any time soon for fear they will be diagnosed with IIH when they are 26. Then, of course, they will hate her.

Sometimes she feels alone. Sometimes she gets sick of talking about her condition. Sometimes she wishes more people were talking about her condition. I think she sometimes cries in the car.

I, too, have had a few quiet moments when tears trickled down my cheeks on her behalf. Empathy is like that: You know you truly care about someone when it hurts you to see her hurt. And, well, damn, it’s different from the empathy you feel for people on TV or in news articles.

She doesn’t occupy the same state as Bridget, or the same decade as Susan G. Komen. I don’t believe she has a sister, and I’m not sure how seriously anyone should take her brother’s promises. 

What I do know is this: She won’t be the last person diagnosed with something weird, painful, and annoying, and she won’t be the last person to declare – as she did on Feb. 23 – that she was going to make sure some relatively unknown disease becomes as well known as cancer.

But she’s going to do it. Or have a hell of a good time trying. 

And, from time to time, I will be there. I’ll be painting hospital waiting room walls red (or purple). I’ll be planning luncheons to talk about brain machines (or whatever). And for goodness sake, I’ll go ahead and say it now: What would be more perfect to serve at Bags for Brains than Jell-O shots molded like brains? 

Keep reading. This story ain’t over yet. You haven’t heard the last of this girl. And you’re certainly going to hear more about IIH.

Dust thou art, and unto dust shalt thou return. But thou might as well dance in the dirt while thou art here.

Why am I here?

There have been so many times in the past few months where I have noticed my memory issues.

It started with words.

I would be trying to give a student a direction or asking them a question and I would lose my train of thought in the middle of my sentence. Luckily Mrs. Rocketship is always there to finish them for me, but it is frustrating to say the least. I forget the names of things. Things we use everyday, take home journal, writing journal, word tool, or I call them by the wrong name. Aphasia it is called.

Now I am noticing it more and more often. I will open a browser window and have no clue what I wanted to search for. I will sit up on the couch, meaning to do something, and have no recollection of what it was. I can no longer make mental lists of things I need at the store. It is frustrating.

I am not in school any longer. I do not have to study and do homework, but I wonder if I would be as good of a student as I was. I used to be able to write something down once and it would be locked in. Remembering facts and figures came so naturally to me. I bet that would not be the case now.

Istvan Sandorfi

It is just one more reminder of yet another thing that has been taken from me by this condition. It has changed me in so many small ways. I am not the person I was in October of last year. That is the most frightening part. What will I lose next? What will I notice has changed? Who will I be tomorrow? Will it be my positive attitude? Will it be my ability to empathize?

It is frightening.

It is like there are pieces of me floating away. Like I am dissolving into bits. What happens when there is nothing left of ME?

Luck

I found this blog.

I like it but it makes me sad.

It is about a young couple. The husband was diagnosed with an inoperable brain tumor a few months after they were married. This blog is amazing and I admire their strength.

I think I feel connected to them because it is there but for the grace for me. I think about how that could have been me. I flash back to the day I was diagnosed and the ophthalmologist telling me it was either a brain tumor or MS.

And sure, sometimes I worry about my future and I worry about getting a shunt and I worry about so many things, but I should be grateful that I HAVE a future to worry about. I know this will not kill me while this couple doesn't have that comfort. I could not admire their strength more.

It was recently their 3rd anniversary and all Tashi (the wife) wants to get her husband is an autograph from Nathan Fillion. She wants to make sure this anniversary is special because she is worried that it is his last. I am trying to be helpful but I am not nearly influential enough. Anyone know how to get in touch with Nathan Fillion?

There are stories like this all across America. There really needs to be a make a wish for adults.

Negative, and not me this time...

I guess it is amazing that I made it this long. Three months without someone looking at me and doubting the fact that anything was wrong with me. Three months without someone making an insensitive comment. I guess I should be grateful.

That stopped last night. Last night when my headache was at about a 6 and had decided to stick around for two days straight. Last night when I had worked a full day and gone out anyway to help Wills raise money for boobies. Last night when I was putting on my game face because this stupid thing is not going to stop me.

That's when I was told I was using it as an excuse.

That's when I was asked if I planned on collecting disability now.

That's when I was told "I see you out all the time" (a blatant falsehood) so there must not be a problem.

And I did not handle it well.

Thinking about it now in the calm light of day I realize it was an opportunity wasted. It was an opportunity to educate that I did not take. Maybe it was not the time or the place to explain that chronic pain is often invisible and that just because you cannot see it does not mean that there is nothing wrong. But you know what, it is always the time and the place. Because he needed to be educated.

So Mr. Boardsman, here is your education.

I wake up in the morning with a splitting headache. I have to drag myself out of bed because both my condition and my "cure" cause extreme fatigue. I go into work where I educate special needs children all day long. I typically have a headache most of the day. I also experience a variety of neck and shoulder pains as well as tingling in my extremities that makes doing anything difficult. On a good day I feel ok. On a bad day I feel like complete shit. I cannot let the children see. I strive to appear like I am feeling excellent each day.

After work I am exhausted. I go home and typically do not get off the couch for the rest of the evening. Not because I do not want to but because I simply cannot. The pain and the pressure and the fatigue are too much.

Why don't I take some Motrin and shut up? Maybe because pain killers don't work. The only way to decrease my pain is to decrease my pressure. The medicine that decreases the pressure has severe side effects that cause similar symptoms to my condition, but at least I will not go blind. It was not made for this condition so it is not the most effective. Nothing was made for this condition because it is rare. It affects 1 in every 100,000.

I get up every day and I do this with a smile because I am stronger than you can imagine. So next time you want to accuse someone with a chronic condition of "using it as an excuse" maybe educate yourself first.

I don't know that I will be asking 10 of my friends to vote for you, sir.

The good, the bad, and the ugly

Last night was amazing.

You often hear people who have been diagnosed with life altering illnesses talk about how they found out who their "real" friends were. This is never a good thing. If you are one of those "real" friends you should feel very bad about yourself.

So I am always at a loss to describe my experience. I found out who my real friends were and I looked around, took attendance, and everyone was still present and accounted for. Even though I have a condition that sometimes makes me a shitty friend. Even though I occasionally have to back out of things or I fail to deliver as promised. Even though I am crabbier than I used to be these people have stuck by me and stepped up to always provide an ear, a hug, and a glass of wine when needed.

Cue last night.

I was told, we're going to have a dinner for Rare Disease Day. This sounded like great fun to me. Can I bring anything? Nope, just yourself! Wills, Mrs. Rocketship, Cats, and Spicy Ramen were all in attendance (with the Hubs of course) and I never believed that a day about illness could be filled with so much laughter and love. Everyone pitched in to make it one of the most memorable nights of my life.

And then came the gift. Who gets a gift on Rare Disease Day?

My shirt! <3

Me, after my LP.

Me, that's who. We were done with dinner eating undercooked monkey bread (which is seriously how I like it, I will tell you about my old school camping experiences at a later time Wills) and Cats brings in this box. I open it, and what is it but a t-shirt with the words "You Down with PTC" on the front, my blog address, and then the words "working to relieve the pressure." The best part? It matches my blog colors. I started to cry. I was just so overwhelmed with how lucky I am.

The best part about the whole night and this morning was I felt great. I had energy, my head felt fine, and I felt like I was back to my normal self. The magic of a spinal tap. I think someone might have body snatched me because I wasn't worried about when the other shoe would drop, which means when it did drop the suddenness was a little off putting.

I was at lunch, munching on my car Cheeze-Its (don't ask) when I got a sharp pain in my forehead. Sinus! I thought hopefully, but it didn't go away. It built into the worst headache of all time. And I just wanted to cry.

24 hours. I got 24 hours of relief. How is that fair?

But life isn't fair, and so I need to change my attitude. Instead of being annoyed by the headache I need to be thankful for the time I did have feeling amazing. I need to be thankful it fell on Rare Disease Day so I could feel normal again for this one night. I need to be happy for what I had. I also need to remember how lucky I am to have the friends and family that I do and to stop focusing on the fact that my head feels like someone is squeezing it and instead focus on how damn lucky I am. I will work on this.