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.

Bummer Tummer

I kind of have a tummy ache. I think it is from the Hubs. Thanks Hubs.

I had a pretty awesome day. It was an early dismissal so the Hubs and I drove out to get my birth certificate as I needed a copy. We went to the wrong courthouse but ended up eating lunch at this terrible little diner. While disgusting for the most part they had the best fries. If you know me at all you know that french fries are my favorite food.

Only at this particular restaurant they did not call them french fries. Oh no. They were called...

Freedom Fries.

I had a tingly face all afternoon. I actually took a nap so I didn't have to feel the tingling anymore. It was my temples and around my eyes. My lower eyelids. Down into my cheeks. Kind of terrible. OK, super terrible.

There are a lot of things that I hate about IIH but the tingly face is the worst. It is impossible to ignore because it tickles and it kind of makes me want to cry. I was laying out in my hammock snuggled up in my favorite blanket with the sun on my face and I was totally distracted by the pins and needles around my eyelids.

Stupid acetazolamide.

Then I google it of course just to see if it is normal and I find that yeah, it is. I also find that some people feel it when their shunts malfunction. And then I remember how lucky I am.

Baltimore: Day 3

 Today I learned all about industry.

We went to the Baltimore Museum of Industry. It is probably the coolest museum I have ever been to. Baltimore was apparently an incredibly industrious city. They were the first in a tons of things.

 Look! More firsts!

 And still MORE firsts!

This is all. There are no more. Just these firsts. I mean, I am sure there are more things that I don't know about but this is all there was at the museum.

Over there is typeset from a printing press and over there is an electric car. I thought the car looked like a boat. It made me giggle.

And the Doosh. Being dooshy. Making sheet metal. Pretty sure you were not supposed to touch the exhibits, but I could be wrong.

This is Charlie!

Charlie AND Nacho

Otherwise we pretty much just hung out at the Doosh's. We played cards and walked the dogs.

The Doosh had to work at 8 so Mom and I walked down to the harbor. We found a place called Saladworks where we got to build our own salads! It was tasty and cool. This will be the last time I walk for about a year though.

My head felt great today. Besides being a little sleepy I felt better than I had all week long. So that was awesome. Of course we did less walking and less overeating today. That may have had something to do with it.

We are leaving for home tomorrow. I am excited to be getting back. I just wish I had brought a muffin up because I need something sweet after my salad.

Baltimore: Day 1

Hi, I'm a botanic garden!

I saw many things today.

I saw this awesome building.

Hi, I am a fuzzy thing!

And inside of this building were lots of plants, including these awesome and hilarious little fuzzy things.





And then we went to the Baltimore Museum of Art. I saw all sorts of wonderful and majestic pieces of art. There were paintings and furniture arranged in rooms. I saw all sorts of amazing and wonderful things. What made the largest impression on me was this...

Hi, I am having sex with a chicken.

This man sure loves his chicken.

Then I consumed this. This is one of the four pizzas that the Doosh's girlfriend, Tiny Dancer, made for us. They were all amazing. I feel like a huge fat slob though.

It was a great day.

Things I am down with...

OPP

PTC

And this sunny weather we are having.

It was so warm today! I wanted to ride my bike, but there was a serious problem with that. I might have been blown away. We took the dogs for a walk instead. The Hubs and I. They loved it.

On the IIH front... AMAZING day. I felt almost like my old self. I am hopeful that with the nicer weather things will start to look up for me. We shall see.

Mom and I went out to dinner tonight. Holy cow was it good. My sandwich had APPLES on it. I LOVE sandwiches with apples on them.

Also, this video is a complete violation of copyright law.

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.

Lazy Days

no idea who made this. sorry.

This one here. This describes my Friday night.

I would like to thank the Presidents of the United States of America for existing so I can have this day off of school to bask in the sun with two small beagle puppies.

I would not like to thank the people from the highway widening commission who decided this would be a great day to chop down the two large trees in my yard forcing me to listen to the sound of chainsaws. That kind of counteracts any relaxing gained from the basking. How selfish of them.

A small boy's face

Buster (left) and Haylee (right).

Sunny sunny day today. I have a walk at the forest preserve penciled in, but I am concerned about the mud factor. It is incredibly muddy. It would get my away from the sound of chainsaws though. I don't know that the dogs will want to go. They seem pretty content to bask.

Rare Disease Day is in 9 days. I hope you have your plans all worked out. If you need something to do you can some watch me get a spinal tap. I would not mind.

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.

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!

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?