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.

I'm so Neeeeeeervous

I have suffered from anxiety for as long as I can remember.

It was pretty obvious.

Still I didn't seek help for it until last year. I woke up from a kidney stone procedure and due to some drugs was calm. My heart wasn't racing. My mind was quiet. I looked at Hubs and said, "is this what it's like for you?" When he said yes I knew it was time to talk to my PCP. The doctor prescribed Lexapro for me and it worked wonders. I was able to face things head on again. I didn't have to look at things from the corner of my eye. My brain no longer invented things to worry about. It was glorious.

Then I was diagnosed with IIH.

Things got worse again on the anxiety front. I chalked it up to the extra stress and went on my way assuming that things would be better when I started to get used to this diagnosis. It has been getting worse. Not all of the time. It will hit me out of left field and suddenly I will be freaking out about something. It is unpleasant and causes me to do and say things that are completely out of character. Even as I am doing and saying them I am embarrassed and ashamed because this is not like me. But it is like it is out of my control.

Tonight was especially bad.

So I googled it. And the results were astonishing. On the message boards it seems like everyone is talking about how they feel the exact same way. There are numerous studies with IIH patients presenting with psychiatric complaints. They surmise that it might be an effect of the increased pressure on our brains.

And now I just want to cry because not only am I not alone but I don't think I am crazy.

And again I am left wondering, how long has this been going on? How long has my pressure been high? How long has this been screwing with my brain? And they say that IIH probably doesn't cause these symptom simply makes them present more strongly. But maybe I would have been functional without meds if I didn't have IIH.

And does any of this really matter? Or does it just give me another reason to be angry? Another reason to hate this condition and the lack of research and the lack of attention and the lack of support and the lack of everything. I don't know.

Dreams

So Prom Date made me watch this terrible movie last night about infectious diseases. Contagion. It was supposed to be filmed here in town but they pulled out. Apparently he ended up working on one of the sets though so it resulted in me sitting through 146 minutes of the most boring shit I have ever seen.

Still, it resulted in these weird dreams about sick people, zombies, and the apocalypse. It also resulted in my getting like 6 hours of very interrupted sleep which I am not ok with.

I'm the kind of girl who needs a good 9 hours.

This is going to be a good weekend. Hubs and I have duties today that can't really be discussed in public because they are technically against the rules (we'll just say it might involve a small girl with a bow) and then tomorrow we are going to the drive in to see The Hunger Games with Cats and Spicy Ramen. I am super excited. I LOVE the drive in and I haven't been there since I was a kid. I will wear my PJ's just in case I fall asleep.

I do have to get to those trainings I need to finish though. Maybe tomorrow afternoon.

IIH can kiss my ass.

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.

Mardy Bum

Yesterday I was unpleasant.

I was not nice to my husband.

This song happened to come on my Pandora and while not only awesome it also served as an excellent apology for the time I yelled at my husband for being sick.

So next time someone is being unpleasant for no reason at all you should call them a Mardy Bum. According to Urban Dictionary that is someone who complains a lot.

I am a total mardy bum.

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.

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.

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.

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.

Post- Spinal Tap

My pressure was...

Anyone want to guess?

30!

I didn't do a pre-post because I felt fine and it was too early. Beautiful sunny day outside and all I had were a few floaters. No head or neck ache. Nothing. Just floaters,

So now I am wondering what my pressure is when I feel like shit.

I have to lay here for two hours. I wonder what I should do. The Hubs is with me at least. I think he might fall asleep. Maybe I should do that too.

Rare Disease Day

Welp... this is it.

This is the day we have all been waiting for.

Slightly anti-climatic? Maybe.

I thought it might be nice to link to some blogs about other rare diseases. Contrary to what the Hubs might tell you I am not self centered. I want to bring attention to all Rare Diseases. I also want to help those who are searching for a voice find it. There is nothing more frustrating than feeling like you are shouting to an empty room.

1. Cyclic Vomiting Syndrome - this one was in the Patch article, but this is a different family. Their little girl suffers from CVS and she has just been officially diagnosed by a Doctor who had it when he was a child.

2. Marfan Syndrome - This is the blog of a mom who's little boy has Marfan Syndrome. This has always been interesting to me, maybe because I am so short. They think President Lincoln had it.

3. Fragile X Syndrome - Another Mom blog but this one is interesting because her sons are grown. You can find out more about Fragile X <---there.

Some interesting things I found out... AIDS is a rare disease as well as Cat Scratch Fever.

I have been sick for the past few days and it has kind of made me cynical and crabbier than usual. I started to think, who the hell cares about Rare Disease Day? The answer is me. I care. I care a lot. Having a rare disease is isolating. There isn't a support group for me. There aren't people out there who know what I am going through. These people understand that aspect though. They understand what it is like to be frustrated because there isn't a cure. There isn't something to fight. There is something to learn to live with. There is something to learn to cope with. There are questions that don't have answers and futures that are uncertain. So even if someone can't understand IIH they can understand having a rare disease. More than that, while someone might not pay attention to a couple thousand they will pay attention to 1 in 10 Americans.

Happy Rare Disease Day! Think of me today as I am getting a large needle shoved into my back to check my pressure. Happy Spinal Tap day!

Moar Cookies

Today I must bake.

Baking for my brain. Brains love baking. Cookies for a cure (I like that one!).

As I will be getting a spinal tap on Rare Disease Day proper I am "celebrating" it tomorrow at work. I figure that will give everyone at work time to make plans for the day as well. I am sure they will be elaborate. Don't worry. I informed everyone I would not be at work on the day so they don't feel pressured to arrange a parade for me.

And the Hubs claims I am self centered.

I think a cold is official. There is drainage and a sore throat to back up that assessment. This is not good. I hate colds. They are a job hazard.

I also have to clean the bathroom floor. There is mud.

I wish Dr. Awesome was going to be at my spinal tap. I would even take Dr. Cowboy. Someone I know would be nice. I have never had a procedure like this with a stranger. When I went in for kidney stone things my urologist was always there. Sometimes he even tried to comfort me awkwardly (he had a terrible bedside manner). So there was a familiar face and someone I kind of trusted doing the actual procedure. I won't know this person. They will just be sticking a giant needle in my back. And who will awkwardly pat my shoulder and call me little girl (Dr. Uro totally did that - strange)? I guess the Hubs will have to step in.

Sleep

Last night I took a night time nap.

This is something I do regularly as it ruins my sleep schedule but I figured it was Friday and I could sleep in if need be. I asked the Hubs to wake me up at 7:30 which he did. I mumbled something about it being one of those nights and fell back to sleep. I woke up at 11:30 pm. I took my pills and went back to sleep. I woke up again at 6 am this morning and proceeded to lay in bed for an hour until my alarm went off.

It was glorious.

Being tired has become a part of my life. It is like a little pet that sits on my shoulder and is always with me. Both comforting and annoying. On occasion it is overwhelming and I do things like sleep for 13 hours. I try to feel like a loser for being 26 and going to bed at 6 on a Friday but I just can't make myself. After this 13 hours of sleep I will feel awake and ok for the morning and then the tiredness will creep back in slowly. It will be more manageable though. It will be a slightly smaller pet, maybe a sugar glider instead of a large anaconda that wraps around my body.

Hey! Let's make a list of things I have to do today...

Nothing.

Ok. That is a slight exaggeration. I will hang out with my mother. We will go out to dinner. We will watch Project Runway Allstars. That is not unpleasant so it belongs in the nothing pile.

Tomorrow I am baking for Rare Disease Day. Did you know Rare Disease Day is on February 29th? I hope you have your plans! Time is getting short. I will be baking a whole bunch of cookies and bringing them into school on Monday. I will be putting little informational things on them so everyone knows about Rare Disease Day. I am increasing awareness. What are YOU doing???

Housekeeping...

I have been playing around with the features on the blog and have added two new gadgets...

1. You can now subscribe by email. It has come to my attention that to follow me you have to have one of a specific list of accounts. Some people don't have one and so I added this gadget. If you sign up you will get an email when I update. I have no idea what the email looks like but I can tell you that they say they will only email you if I post.

2. Some people utilize RSS feeds. I added a gadget for that as well. You can subscribe to my posts or comments. It'll make it easier for you to add me to your RSS feeds. Which you should. Because I am awesome.

Also, due to peer pressure from Spicy Ramen, Sprockets, and the Hubs I had to change my font. Apparently boys do not like the old font.

<3