Hope

This is my chest.

This is where I will put my hopes.

Or bright orange snow pants. I might put those in there too. The winter clothes will smell wonderful.

Prom Date bought it for me. He is quite the guy.

Or I could store a dead body in there.

Oh God. We are teetering on a fashion emergency. TJizzle is trying to leave the house in plaid on plaid.

I cannot allow this to happen.

This is almost as bad as jean on jean.

I have saved him from this terrible fate.

He has selected a solid blue shirt. This is by far the better option and now he can pick up hot nurses.

I need to go back to work. I am about to go crazy with boredom. The house is clean. The laundry is done. The fridge is cleaned out. I might even... GASP... clean the floors. I do need to make up some sugar cookie dough but that would require me to wash the dishes I pulled out of the fridge and I don't know that I am that motivated yet. They aren't due until babysitting tomorrow morning so my natural urge to procrastinate is taking over.

I start sitting again tomorrow for the Stinks and then I have my first camp on Monday. Then I will feel better.

I was thinking last night about the fatigue when I was first diagnosed. I would take my pill at 7 am on the dot and by lunch at 12:30 I was falling asleep in my car. I would have to push through the rest of the day and then I would get home and pass out on the couch where I would pretty much sleep until the morning. Just getting up when my alarm went off to take my pill at 7 pm. I would say in general I am more tired than I was before diagnosis, but I am so glad that this particular side effect has pretty much cleared up.

When we were in Baltimore and then again when I was helping Prom Date and his family out this weekend I did notice that I wear out more quickly. That is frustrating. I noticed in Baltimore that a day of walking was way harder on me than it had been the year before. I hate that. Luckily I am stubborn enough not to let it stop me.

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.

Benedryl.

huh?

Although it might not help my cold a ton I certainly don't care as much at the moment.

Today there is nothing profound. There is nothing insightful. There is just a lot of snot and coughing.

Tomorrow I will talk about blood pressure. Maybe.

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.

Strawberry Smoothie

Today.

I have been so tired lately. Yesterday I slept for two hours and then went to bed at 11 and slept through the whole night. I would have done the same tonight but I went out for smoothies instead (thanks Prom Date).

I have nothing exciting to report. Just playing the waiting game.

Waiting.

And waiting.

And waiting.

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.

Baltimore: Day 2

Today for breakfast I ate at Miss Shirley's. It was fabulous. To the left are white chocolate raspberry pancakes and to the right are some delicious hash browns with onions. I think I gained twenty pounds.

 After that we drove over to Fort McHenry. This was where Francis Scott Key wrote the Star Spangled Banner. It also saved Baltimore during the revolutionary war. It was pretty awesome and the grounds are beautiful. The only problem? I forgot my memory card in my camera so I could only take a few pictures.

We went to Fell's Point which is a neighborhood in Baltimore and I saw where Homicide was created! isn't that super cool?

We walked to Fell's Point. It was a pretty long walk and by the time we were trecking up the hill on the way back to the Doosh's the back of my neck felt like it had a metal rod stuck into it. I assume it was some type of exertional headache. That is one thing I have really noticed on this trip. I am so much slower than I used to be. I have less energy and I get bogged down by fatigue sooner.

So bottom line it was a relief to be back at the Doosh's hanging out with Charlie and Nacho. Mom even fell asleep.

But the crowning achievement of the day was none of these things. It wasn't even the delicious Greek food I had for dinner that I failed to take a picture of. It wasn't even when my neck ache went away and I started to feel human again.

It was Duckpin Bowling.

Doosh bowling

Tiny Dancer bowling

Duckpin bowling is much like regular bowling only the balls and pins are smaller and you get three turns a frame instead of two. It was probably the most fun thing we have done thus far. I would Duckpin bowl again in a heartbeat.

Mom bowling

Good Day

Today was a pretty good day.

Did you know that they are doing all sorts of construction downtown? This means that my simple turn right onto Clark and then right onto Adams plan failed miserably. This resulted in my wandering around a three block radius like a mouse in a maze. I finally asked a security guard who told me the exact wrong thing and then I asked a second security guard who told me the exact right thing.

Success was had.

I cannot really talk about what exactly went on in the interview but I can say I think it went well.

I have blisters.

I am packed and ready for Baltimore. I am excited. Although sleeping over spring break sounds rather appealing right now. The headache might have something to do with that as well as a rather stressful day. I did get a nap in. So that is amazing. I think I am overdue for one of my 13 hour sleep days. I will not get that tomorrow.

I talked about IIH in my interview. I talked about how I will not let it stop me. I talked about how lucky I am to be responding to treatment and to have been diagnosed so quickly. I am lucky. I am very very lucky.

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.

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.

My hair hurts

So Wills is going to post a guest blog post.

I read it and it is far better than any post I have ever written.

I will understand if you want her to take over. So look out for that.

Not only am I exhausted but my hair hurts. I had a student tell me that the other day. I laughed at him. Now he is the one laughing at me. He has this dimple. It kills me. He could probably kill one of my dogs in cold blood and I would forgive him just because of that stupid dimple.

Another shitty thing about IIH. My eyes get sore. Like exhausted and itchy sore. So I am always rubbing them. I think that makes you get wrinkles. I will look old before my time.

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.

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.

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.

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???

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.

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.