Last Night

Terrible night.

I had to take two Benedryls so the sleep inducing powers would over take my headache so I could sleep. It was a couch night for sure. I basically sat straight up and it still felt like there were nails being driven into my forehead.

Stupid weather.

Stupid IIH.

Stupid.

I have no problems

I have 6 or 8 problems at the moment. Most of them are pain related.

I am considering driving off a bridge but Hubs has told me that I need to wait at least three days. He says at that point we can reevaluate. I am becoming convinced that he will never see things my way. If I became a quadriplegic then I couldn't feel pain right?

And that was an absolutely terrible thing to say.

Horrible.

Sometimes I think awful things. I think what many people fail to understand is the nature of this condition. They fail to realize that this is a never ending cycle. When I am in pain there is nothing I can do. I just have to push through it and continue on with my life because the other option, sitting at home moaning, isn't really feasible for me. So I plaster on a smile and take care of the kids and pretend like it doesn't feel like there is a burning steel rod shoved into my neck.

This weekend I have really nothing to do, which is nice. I can catch up on some training stuff I have put off for basically the whole school year and wallow in my misery. Completely healthy. The Doosh will be in town which will be uplifting I am sure. He will give me really motivating advice...

"Stop being a little bitch."

"Rub some dirt on it and walk it off."

"No one cares."

Thanks Doosh. I love you too.

Boogers.

I have a terrible cold.

It is terrible.

I am terrible.

I took a Benedryl and am sleepy but still coughing so I don't think I can sleep in bed because then everything will drain and I will not be able to fall asleep because I will be coughing and it will be terrible.

I think I should take a shower.

Then I could sleep a little later tomorrow.

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 Girl.

I get girly when I feel shitty...

Deal with it.

I missed you

I am sorry. I have been unmotivated since my vacation.

Tomorrow is the first day back from spring break and so I have to get back to it.

I have had the shittiest head day ever in the world. I took a nap earlier, not because I was tired but just because I wanted to have my eyes closed. Sometimes when I have these days I think about the people who tell me that I always have a smile on my face and I want to go out and about because I do not always have a smile on my face.

Energy.

Bad day.

Big head.

No energy.

Picture says it all.

The Other Shoe

Neck/headache all day. Achy eyes. Exhausted. Floaters. The norm.

I had a dream.

In this dream my vision was double. It was only in one eye and it was not only double but the one eye was sideways too. I was in PE with the Stinker and I keep asking the PE coaches to call my mom so she could take me to the hospital. They refuse and they keep finding these drops that they insisted would help. They wouldn't listen to me as I was trying to explain that I need a spinal tap.

Bizarre.

We had a thunderstorm today. Even though I felt kind of like poop it was still nice to see the first thunderstorm of the year. There was lightening AND thunder. It was exciting.

Three more work days until spring break! I leave for Baltimore in 4. I am excited.

Today Sucked

Stupid today.

Everyone was crabby and their hair was messed up.

I got yelled at by the lunch ladies. EXCUSE ME if the Stinker has a processing delay and needs a little more time telling you who her teacher is. You don't have to YELL at me. And we come through everyday. You should kind of know by now and you could just be punching it in while I am forcing her to go through the motions.

It was rainy and I was crabby. I had a headache all day and I was tired. I yelled at an old man who was trying to cross the road. Not like, to him, but in my car. I also yelled at a lady who didn't merge as quickly as I wanted her to.

So I guess I was crabby too. Let's all hope that tomorrow is better.

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?

Negative, and not me this time...

I guess it is amazing that I made it this long. Three months without someone looking at me and doubting the fact that anything was wrong with me. Three months without someone making an insensitive comment. I guess I should be grateful.

That stopped last night. Last night when my headache was at about a 6 and had decided to stick around for two days straight. Last night when I had worked a full day and gone out anyway to help Wills raise money for boobies. Last night when I was putting on my game face because this stupid thing is not going to stop me.

That's when I was told I was using it as an excuse.

That's when I was asked if I planned on collecting disability now.

That's when I was told "I see you out all the time" (a blatant falsehood) so there must not be a problem.

And I did not handle it well.

Thinking about it now in the calm light of day I realize it was an opportunity wasted. It was an opportunity to educate that I did not take. Maybe it was not the time or the place to explain that chronic pain is often invisible and that just because you cannot see it does not mean that there is nothing wrong. But you know what, it is always the time and the place. Because he needed to be educated.

So Mr. Boardsman, here is your education.

I wake up in the morning with a splitting headache. I have to drag myself out of bed because both my condition and my "cure" cause extreme fatigue. I go into work where I educate special needs children all day long. I typically have a headache most of the day. I also experience a variety of neck and shoulder pains as well as tingling in my extremities that makes doing anything difficult. On a good day I feel ok. On a bad day I feel like complete shit. I cannot let the children see. I strive to appear like I am feeling excellent each day.

After work I am exhausted. I go home and typically do not get off the couch for the rest of the evening. Not because I do not want to but because I simply cannot. The pain and the pressure and the fatigue are too much.

Why don't I take some Motrin and shut up? Maybe because pain killers don't work. The only way to decrease my pain is to decrease my pressure. The medicine that decreases the pressure has severe side effects that cause similar symptoms to my condition, but at least I will not go blind. It was not made for this condition so it is not the most effective. Nothing was made for this condition because it is rare. It affects 1 in every 100,000.

I get up every day and I do this with a smile because I am stronger than you can imagine. So next time you want to accuse someone with a chronic condition of "using it as an excuse" maybe educate yourself first.

I don't know that I will be asking 10 of my friends to vote for you, sir.

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.

Cookies

I have abused barbiturates today. Go ahead. Judge me, but I am just so sick and tired of feeling like shit. Yeah the pain meds don't help the pain but they do many me care a lot less. Now before you stage an intervention let me clarify, I took half the recommended dose this morning and the other half when I got home from work. So I guess abuse is a slightly strong word, but I feel like taking them is abuse in and of itself because I know they won't help.

I have had a headache for nearly 48 hours straight.

Today I am in the paper. I am on page 11. Check me out. I will not tell you which specific paper because I want to make it challenging for you.

I am baking cookies. I love cookies. I had to make chocolate chip and oatmeal toffee chip. I want to eat them all.

I think the hardest part about IIH is that it is invisible. When I was talking to the NewsMan about it I joked that people think I just always have a hangover, but really that isn't far from the truth. I am tired all the time. I have a headache. I am a little grouchier than I was. Still, I look the same so what can be wrong with me? People who know about my diagnosis and see me for the first time always comment on how I look great. I want to punch them. What do they think will have changed? Do they think I will suddenly have grown a fourth nipple? Everything that is wrong with me is real, but it is all inside my head. Sadly that statement makes me sound like more of a crazy person.

Negative

I figured I'd warn you in the title.

This will not be a positive entry.

I went out to dinner with my mom and went back to her house to dye her hair and watch Project Runway. I felt fine. Suddenly at about 7:45 I was hit with a headache. So I lay down for a second because that's what you want to do when you have a headache. You want to lay down. Except when you have IIH. Then laying down makes it worse which sucks because all I want to do when I have a headache is lay down. And that woman made me dye her hair anyway.

I have been woken up by headaches my whole life. In the middle of the night I would wake up because my head hurts that badly. Somewhere in my brain I would think, if I could just fall asleep then this headache will go away. When I would lay down the headache would get worse and typically I would end up abusing advil and crying.

Early sign of IIH? Who knows. Who cares? I have the stupid thing and nothing is going to change that.