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.

Eyeballs

I know I said I was going the the eye doctor weeks ago, but I lied.

I went to the eye doctor but the appointment had been made with the wrong person so I had to reschedule. Today was the day I rescheduled for.

Dr. Straightman is pretty awesome. He is super nice and I think interested in me. I am rare you see. So he did the whole standard exam and my corrected vision is still 20/20. This is very good as it means the swelling that I had did not cause me to lose vision.

Then he looked at my optic nerves. I have such big eyes that they don't even have to dilate me. There is NO SWELLING in either nerve. This is awesome. The headaches are manageable and there is no swelling which means that even though my pressure is slightly high I can stay on my current dose of acetazolamide.

The only negative was that he saw some permanent damage to my left optic nerve. I guess something about the color indicated there was slight damage from how swollen it was the first time. He said that it probably would hardly be noticeable.

So all in all a great appointment.

Happy Saturday! Or as I like to call it, nap day.

Wake Up

I keep getting this feeling that this is all a dream and I am going to wake up.

I wouldn't change a thing.

I have lost weight. Maybe 10 pounds? So I don't know if that has something to do with how great I feel lately. Apparently the bigger thing is a restriction in sodium and a reduction in fluid intake, which is interesting since I am on a diuretic. I don't know. All I know is that I feel so much better.

I got my hairs cut. Wanna see? I'm pretty.

Fun night last night. I hung out with a super old friend from high school. I think I'm going to name him the Vampire. I got completely smashed on two screwdrivers. I got home an hour later than expected and my mom had called the police. I am not even kidding.

I need to move out of here.

Move over TJizzle, I'm hopping in!

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.

Carry On.

This is my new favorite song.

I heard it last night.

It was like... fate... or something.

This is the acoustic version. Which makes me smile even more.

<3

Untitled

I am failing at this blog post.

I can't seem to get the right tone.

I can't think of the right title.

I am just at a loss as to what I want to say or really how I feel at this moment in time.

Physically I am fine. Slight neck ache. Slight headache. Slight cramps. Nothing debilitating.

Emotionally.

It was an interesting few days.

There are people in your life who make you feel like you're wrapped in a warm blanket.

There are people in your life who don't.

I want to spend my time with the people who make me feel like I am in the warm blanket.

Silly IIH

There are times when IIH can be silly.

Today I was coming in from recess and I had a ton of floaters. One was different than all of the rest though. It was perfectly round and somewhat gray and it seemed to stay in the same exact spot no matter where I pointed my eye. I was freaking out about it slightly and determined that I might need to call my husband and Dr. Awesome. I was convinced I would be leaving work early to head into the hospital for another tap.

Luckily I had the presence of mind to remove my glasses and hold them up to the light before I took any drastic steps. Why was this lucky? Because there was a smudge on my glasses that mimicked a blind spot. Wouldn't I have looked stupid?

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.

Dr. Who?

GOOD NEWS EVERYONE!
I am not growing horns.

Dr. Awesome!

I saw the good doctor today and we set a record. There was not a single face palm.

I think he has given up.

Bottom line, we aren't going to do anything. Well. I am going to do something. I am going to make an appointment with the ophthalmologist. As long as I am not losing my sight and my headaches aren't worse we are going to keep on keeping on.

This makes me happy.

I am going to make a second section with Dr. Awesome's answers. I wouldn't want to confuse him with questions. The poor man already has enough to deal with when it comes to me.

On another and equally important note I saw a goose poop yesterday. Like I actually saw the poop come out of it's butt. It was hilarious and I giggled at least three times thinking about it today. It really comes out as a white liquid. I don't know why that would be surprising to me, but it was. Also hilarious.

Tomorrow. Expect a Roy announcement. He looks great.

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.

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.

Excitement

I am wearing one of the Hubs' shirts. It smells delicious.

SO! Got a message on the bookface today from the NewsMan. He got an email from someone who read my article who's daughter has IIH. Terrible that she had IIH, but cool that the article did what it was supposed to do! This poor girl has been having a rough go of it lately and so I am going to call her tomorrow. Hopefully we will be able to get together and talk about how much this thing sucks.

I took a nighttime nap tonight. I am a failure.

Pretty awesome day for me on the IIH front. Nice sunny day which meant nice clear head. Exhaustion reared it's ugly head about 6 though. Sometimes it happens that way, I'll be fine fine fine fine fine and then all of a sudden I am falling asleep. I am still groggy, but that could have been the deep sleep.

I had a dream that I was asleep and someone knocked on the door. I had to let them in but by whole body was asleep so I was dragging myself to the door. It was incredibly frustrating because the person was rather upset with me.

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.

Dedicated to the NewsMan

This post is dedicated to the NewsMan.

He wrote the BEST piece about IIH and Rare Disease Day ever (besides the other article that was written about it and posted on the Patch).

The lede? "YouDownWithPTC is a rarity, and it's not just because of her personality." I think that is going to go on my tombstone.

What a great end to a shitty two days.

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