Headaches

Shhhh, Prom Date is sleeping.

This whole working nights business is stupid. Like, really stupid.

Last night we went to a rib fest in our little town. It was fun. And Prom Date's mom asked how I was feeling as I had been having pretty consistent but super mild headaches for the past few days. I replied that I was better, but it lead to a discussion about how I know what kind of headache it is.

This is an interesting question and one I have discussed with Dr. Awesome at length. We have worked out a system. I ask myself four questions...

1. Have I eaten today?
2. Have I had enough water today?
3. Have I had caffeine today?
4. Did I sleep last night?

If any of those things need to be fixed I try to remedy the situation. If they don't need to be fixed or the fix doesn't work I take three or four Motrin, depending on the headache. If THAT doesn't work then it is safe to assume it is a pressure headache.

A pressure headache WILL NOT go away unless you reduce the pressure. And so, that's how I know. : )

Rawr

I have had a headache for like four days.

Nothing major, just a slight neck ache and headache in my forehead.

Just enough to be annoying, but not enough to stop anything. Just enough to make me throw a slight fit in the kitchen and then quietly do the dishes (I can do those Sweetie).

Sometimes I eat fries just for the condiments.

TJizzle just saved me from the world's largest spider. He is quite handy.

Today Prom Date fixed the fan. He is also quite handy.

I am lucky to live with two such handy young gentlemen.

Holy shit, I might be tired. I better take advantage of this while I can!

Independence

Yesterday was the 4th of July.

That is a day to celebrate independence.

Yesterday felt weird. It was the first day in what I am sure will be a string of building new traditions. Which, although liberating, is strange. And the 4th was always a big deal. The biggest deal of all of the holidays. And I have a confession.

I HATE the 4th of July.

I think the parade is boring and the fireworks stink.

There, that is MY declaration of independence.

But yesterday was ok. Too hot to really do anything so it was quiet and involved a nice long nap and sadly a terrible headache. The first really terrible headache. Which I have been nervous about. I should have known better. I was tucked on the couch and told not to move. I was kissed on the forehead and asked if anything could be done. I was told that being taken care of was his most important job. : ) I nearly cried.

And I got to thinking. About IIH and the role it played in the demise. I started to picture myself reading this blog and panicking as I wondered if that would be me and MY marriage and so I have decided to delve into it just a little bit. Just enough to let potential caregivers of someone with IIH know what it is like and what I want when I feel like crap.

IIH is frustrating for everyone. When you love someone and they are in pain your first response is to fix. Pills, ice, band-aids; anything to make it better. That is impossible with IIH. The thing you have to remember is that you can't feel their pain. And therefore you can't judge it. That was one of the mistakes that was made. It was by far not the worst mistake or the only mistake. It was not the one that sealed the deal or made up minds. It was something in a long lists of mistakes. It was by far not the deal breaker, but it did break me just a little bit more.

To have your life change and then to be made to feel over dramatic and useless when dealing with that change.

So my advise to all caregivers. Just be there. When pain hits just be there. I don't know how your sufferer reacts but I do know what I do, I hide. I slink off into another room and try and pretend that everything is ok. I rub my head and sigh until someone walks into the room and then I straighten like a kid who's hand was caught in the cookie jar.

Catch them. Sit them down. Kiss their forehead. Tell them to stop. Ask them what they need. Give it to them. Listen. Believe. Love. And if they need to pretend that they are fine and keep slogging through, let them. But be ready for the fall.

Just be perfect, like Prom Date. Maybe I will have him teach a class.

Things with Wheels

I need a car.

Badly.

It needs to be cheap.

I felt kind of crappy yesterday. Knot in my neck and a slight headache.

I opened a bank account yesterday. I also took my name off of the car insurance policy. There are a million little things that you have to do. It is hard to keep them all straight. I am staying in tonight and getting organized and figuring everything out.

The paper will be delivered tomorrow. I will find a car and a place to live.

I am determined.

Poor Prom Date and Mom aren't going to have to cart me around anymore.

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.

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.

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.

Cold

Gah.

I have developed a cold. It seems to be residing in my throat so my voice is slightly gravely. I should maybe think about recording my blues album this week.

The sinus headache that accompanies it is not especially enjoyable either.

Someday soon I will catch a break.

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.

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.

Bummer Summer

A public service announcement...

TODAY IS NOT FRIDAY.

Even though it is beautiful and you felt like doing nothing at work today and you spent a half an hour down by the pond watching some weirdo hopping up a hill it is not Friday. It is Tuesday. Tuesday. It is also a full work week. So get used to it.

Today. Oh today. It was gorgeous but I had a headache. On and off all day. Lots of floaters in the morning. Stupid. It seemed to go away in the afternoon but then it came back when I rode my bike. Exercise induced headaches. Have I told you about these?

Certain exercises, like schlepping your bike up a hill, tend to increase intracranial pressure. YES! The one benefit to this condition. An excuse not to exercise.

So when we were hanging out the other night Wills wanted me to address something in my blog. She said that she wasn't clear on how this whole thing started. She knew the history with the hospitalization but she was curious to know when the symptoms first started.

The answer is I don't know.

There are indicators that it may have been something I have had since high school. Or it may have been something that just started. We don't know. Idiopathic means without origin which means we don't know exactly when it started. We don't know why it started and we don't know how it started.

Have I mentioned you can donate? They also have a store. There is a really pretty bracelet.

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.

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.

Chapped Lips and Vomit.

I threw up three times yesterday.

I don't know why I threw up.

I do know that the first time I coughed, had a sharp pain in my head, and then I heaved. The other times were post cough as well. I felt terrible all day.

I went to help the homeless though. Mostly because I didn't know how to get a hold of anyone to cancel. It was a good thing too because there was a skeleton crew. I did not go near the food.

I feel better today. I have been able to eat. I have been trying to stay extra hydrated. My lips are chapped.

My head still hurts when I cough. No vomit has been seen. It is staying in my stomach where it belongs.

That's something I have never thought of. You always have vomit in your body. You just don't call it vomit until it exits your body. So there is potential vomit INSIDE of me right now. This is a mind blowing realization. And even if you haven't eaten in a while there are still stomach acids that you can throw up. So there is ALWAYS potential vomit in your body. Lurking. Waiting.

I think I need a nap.

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.