Crabs

I am ready for summer to be over.

I am sick of not having a routine. I am sick of not knowing what I am getting myself into most days. I am sick of not being the expert on my kiddos. I am sick of not knowing what day it is.

Mrs. Rocketship, I NEED calendar.

Getting back to the Stinks feels like coming home. I know what to say to her, I know how to motivate her. And even on her worst days I know exactly what to expect.

I am petrified to see what next year brings. Life after the Stinks is daunting.

But it will be the same students, the same routine, the same coworkers, and the same tasks.

And I will still have the Stinks. Three days a week. At least 5 and a half hours a week. I might sneak her in my purse and carry around school with me. Just so she can say something funny when I am having a crap day.

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.

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.

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?

Rocks in my Pocket

The Stinker.

I love and adore the Stinker.

She is probably the funniest kid on the planet. Sometimes she looks at me and says something and I nearly die. She brings something to school each day on the bus. She is always excited to show me what it is. Today it was a rock. She held the rock out for me. I asked her what it was. She said... A ROCK! I asked her why she brought a rock. She said to put in her pocket.

Why would this seven year old girl bring a rock to school to put in her pocket?

Well, on windy days I tell her that we better put rocks in our pocket so we do not blow away.

Apparently she listened.

Mrs. Rocketship, can you believe that I have not blogged about The Stinker before???

It was overcast all day. I felt ok, but tired. A headache has started to set in. I am not ok with this. It is supposed to storm tonight. I am afraid of storms.

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.

The Field Museum

Things I learned at the Field Museum yesterday...

I am incredibly immature.

This man is my brother from another mother. My sister from another mister. A man descended from ancient peoples who has decided to wear a rather low cut top. As I stood stroking his cleavage (this was a photograph people, not a real man) and asking my friends if they thought his top too low cut it occured to me that I may not be getting what I am supposed to be out of this experience.

This is a picture of two bugs having sex. There was a whole bug sex display. I couldn't help but imagine the person who had to pose those little buggies in sexual positions. Do you think he enjoyed it? I imagine it is a peaceful job, but what do you tell the wife and kids when you get home from work?

"So what position did you go with honey?"

"Doggie style, I wanted to think of you when I looked at them." Weird.


And then there was the poop search. I may have learned that some butterflies drink poop juice. I may have sent this information to Mrs. Rocketship because I knew the boys would be excited to know about this. She instructed me to learn about things other than poop at the Field Museum. I of course spent the whole day looking for something about poop. I had no idea there would be so little poop information in the Field Museum. Finally in the last exhibit Sprockets found me poop. He is my hero.

So yeah. Field Museum was pretty cool. The only thing I cannot get used to is how tired I get. I used to have so much more energy, but by the end of the day I was beat. I had a headache, which I am going to chalk up to lack of food, but the exhaustion was the really horrible part. I would have been tired before, but this was like barely hold your head up and prop your eyes open with tooth picks tired. Just something I will have to get used to I guess.

Life with IIH: The Musical

Featuring songs like... Why is this vice squeezing my head? Who is shoving an ice pick into my neck? Why do I see two of everything? My life won't go on. and other great musical numbers!

I am going to put it on at the Follies. What do you think?

My husband is sick. He has a stomach bug. I am trying to be thoughtful and caring. The problem with this is that I feel like I often expend much of my positive energy at school and so when I get home my nurturing nature is kind of used up. In addition to this I am exhausted when I get home because of the IIH or the meds or the winter or something and so I just don't have the energy to baby anyone, including myself. I am a terrible wife.

The teacher I work with (who I will have to think of an awesome blog name for) was sick. As I have my bachelor's I subbed for her today. Our boys are so friggin cute. The Stinker (my student and a girl) is of course adorable but there is just something about grubby little boys that pulls at the heart strings. Especially when they do not like to be touched and they give you TWO hugs in one day even after you put them on yellow.

What do you think my dog is eating off the bottom of Awesome Husband's shoe?