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.

I am a bee

SHIT! I promised you Roy.

I don't have time to do Roy justice today. You will have to wait until tomorrow. I am updating quickly to tell you I am busy and then I am going to bake cookies.

This has been a slightly crazy week. The Statesman (this is going to be my brother in law's blog name) was running in the primary on Tuesday so we went to his victory party and were there the whole night. Last night I saw Dr. Awesome and didn't get home until later than expected. Then tonight I have to bake and watch the finale of Project Runway with my mom. Tomorrow is my interview with Teach for America and then Saturday we are leaving for Baltimore.

I also have to hang out with Wills tomorrow because I have not seen her since the dinosaurs walked the earth.

When will I get everything done?

Despite a balloon head on Tuesday I have been pretty lucky thus far. I just hope I don't feel like crap tomorrow. I might cry. I will just have to power through it though.

GOGOGOGOGOGOGOGOGOGOGOGOGOGO!

DOUBLE FUCK. This is my 100th post. I was going to do something special! I fail at blogging. I am so sorry.

<3

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.

Surprises

Today was supposed to be a surprise birthday party for Cats.

She found out.

Now I am not pointing fingers or naming names, but I assume the responsibility lies with her husband, Spicy Ramen. I know that he may try and fool you with his denials in the comments of this blog post. I would suggest you take everything he says with a rather large grain of salt.

Wills' guest post. Pretty awesome huh? Almost made me cry.

Today has been a fine day. A good day. Sunny as can be so we took the pups for a walk down by the pond. Then I napped, which is interesting because I slept for 12 hours last night. Something I need to ask the neuro about I think.

Dr. Awesome... is narcolepsy a typical side effect of IIH?

I also discovered something a little horrifying last night. I believe I am growing horns out of my forehead. The Hubs says they are as pronounced as they have always been. I doubt him on this. And they seem to be smaller today. Also something I need to ask the neuro about. I think this one might have go in the ridiculous question section though.

A little housekeeping note. I have added a symptom calendar up above. If you click on it you will travel to my google calendar which will tell you the weather and what symptoms I am experiencing that day. Enjoy. Maybe someone will want to make a graph.

I must go shower for this surprise party that is no longer a surprise. I hope the vegetarian chili is tasty. I used this recipe but I added a whole bunch of things and my crock pot barely closed. Oops.

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.

My hair hurts

So Wills is going to post a guest blog post.

I read it and it is far better than any post I have ever written.

I will understand if you want her to take over. So look out for that.

Not only am I exhausted but my hair hurts. I had a student tell me that the other day. I laughed at him. Now he is the one laughing at me. He has this dimple. It kills me. He could probably kill one of my dogs in cold blood and I would forgive him just because of that stupid dimple.

Another shitty thing about IIH. My eyes get sore. Like exhausted and itchy sore. So I am always rubbing them. I think that makes you get wrinkles. I will look old before my time.

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.

Karma

I used to believe in karma. I thought there was a balance to the world and that things happen for a reason.

I don't think I believe that anymore.

I have started reading blogs. Mostly medical blogs. Mostly blogs about people who are worse off than me so I can keep everything in perspective. First Wills pointed me to this blog. It is about a girl who is around my age and has Stage IV breast cancer. It is sad and happy all at the same time. Then there is this blog. It is called Jamsie Beats the Tumor. It is about a baby boy who gets a very aggressive and rare tumor. They start of with Day One, diagnosis and James dies on Day 24. It is heart wrenching.

I am thankful everyday that I do not have cancer. If I had a choice between cancer and IIH I would pick IIH most every time. I mean, if I had like a little mole that could be removed and they could promise it would never come back I would probably go for cancer. Still, cancer is terrible and horrible and I wouldn't wish it on my worst enemy.

I would kill for their support groups though.

Even if you have a rare kind of cancer there are commonalities that you can use to connect to other sufferers/survivors. It is also so familiar to people. If you tell someone you have cancer they kind of know what you're going through because it is slightly similar for everyone. Everyone knows of someone with cancer. Everyone knows the side effects of chemo. Everyone knows how much it sucks.

I am going to do that for IIH.

Everyone is going to know what IIH is. That is my goal.

Wear your pj's inside out for me. I want a snow day tomorrow.

Grrrrrr-eat Day

Today was a good day. Things were just kind of coming up Me.

I woke up to a text from my brother. Well, really a series of texts, telling me how much he liked my blog. It made my day. My brother (we will call him Doosh) and I live rather far apart and as such are not super close. We can't hang out on the weekends but when I do go visit we have a great time. He will not only have my back if someone is giving me shit but he will also tell me when I am being an idiot. Both excellent qualities in a brother. So what he said meant a lot to me and it made me feel warm and fuzzy inside.

It was also a half day at work, which is just glorious.

I had my interview with the local paper and that went really well. Of course I knew it would because the NewsMan is such a great guy. I don't know when the article will run, but I will scan it in here so you all can see it.

Hanging out with Wills always makes a day worth while.

It is also insanely nice out. Sunny and whatnot. I feel like a million bucks.

<3

Flutterbies!

Yesterday we went to a nature museum. I went with Wills and some other friends... they need names... Sir Cats A Lot will be one aaaaaaaaaand City Girl another. I am sure Sir Cats A Lot will be shortened to simply Cats. She is also not a boy so where the Sir came from I can't really say.

Not only did we see lots of awesome nature things AND hang out in a butterfly garden but we went to an awesome Turkish restaurant. Now if any of you know me you know I am picky. I eat like a five year old and I am ok with that. Still, when the food looks like this and the restaurant is this comfy... You can't really help but be impressed.

The waiter was also super cute. I thought about asking him to snuggle up in those pillows with me and take a nap but I was told that was inappropriate.

At this all women's gathering we were discussing food cravings and I promised to link to what you really want when you are craving certain foods. I figure all of you guys might like it too, so here it is. Basically, I need more calcium.

In IIH news the day was pretty much a success. I started to feel rather tired at the end, but I am also a lazy ass who never leave my house so that could play a large role in the problem. No headaches to speak of. I was a little nervous as this was the first time I had ventured out into the hustle and bustle of the city without the Hubsters along since my diagnosis but it all went off without a hitch.

Today not so much. Cloudy and gross and that's kind of how I feel inside. Mostly my neck region. Also I am very tired. Same old, same old.

Also, I do feel much better about my MRI fears. Look at this person. Their nose appears to be a totally normal size!