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. : )

But wait... There's MORE!

I saw the neurologist yesterday.

Dr. Awesome was awesome, as always.

We chatted a bit. I had to push and pull him. He did not tickle my feet. He peeked at my eyes. Asked me about headaches and then told me he didn't need to see me for 5 more months. After he had coaxed me out of the corner and calmed my weeping he explained that while he WANTED to see me everyday there really was no medical reason. So then I began to fake double vision. He did not buy it.

So yeah. I think I am officially managed.

This is awesome.

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.

I am a bee

SHIT! I promised you Roy.

I don't have time to do Roy justice today. You will have to wait until tomorrow. I am updating quickly to tell you I am busy and then I am going to bake cookies.

This has been a slightly crazy week. The Statesman (this is going to be my brother in law's blog name) was running in the primary on Tuesday so we went to his victory party and were there the whole night. Last night I saw Dr. Awesome and didn't get home until later than expected. Then tonight I have to bake and watch the finale of Project Runway with my mom. Tomorrow is my interview with Teach for America and then Saturday we are leaving for Baltimore.

I also have to hang out with Wills tomorrow because I have not seen her since the dinosaurs walked the earth.

When will I get everything done?

Despite a balloon head on Tuesday I have been pretty lucky thus far. I just hope I don't feel like crap tomorrow. I might cry. I will just have to power through it though.

GOGOGOGOGOGOGOGOGOGOGOGOGOGO!

DOUBLE FUCK. This is my 100th post. I was going to do something special! I fail at blogging. I am so sorry.

<3

Dr. Who?

GOOD NEWS EVERYONE!
I am not growing horns.

Dr. Awesome!

I saw the good doctor today and we set a record. There was not a single face palm.

I think he has given up.

Bottom line, we aren't going to do anything. Well. I am going to do something. I am going to make an appointment with the ophthalmologist. As long as I am not losing my sight and my headaches aren't worse we are going to keep on keeping on.

This makes me happy.

I am going to make a second section with Dr. Awesome's answers. I wouldn't want to confuse him with questions. The poor man already has enough to deal with when it comes to me.

On another and equally important note I saw a goose poop yesterday. Like I actually saw the poop come out of it's butt. It was hilarious and I giggled at least three times thinking about it today. It really comes out as a white liquid. I don't know why that would be surprising to me, but it was. Also hilarious.

Tomorrow. Expect a Roy announcement. He looks great.

Life Changes

When I was diagnosed I didn't know what it would mean. Since each person is different it means that other people's problems will not necessarily be yours.

What I did decide is that it wouldn't stop me.

So, still with pretty significant blind spots, I baked and decorated 8 dozen sugar cookies with little faces two days after being released from the hospital. To this day I am not sure how some of those little guys looked, but they were made and that was all I cared about.

I refuse to let this stop me and with that in mind I applied for Teach for America.

I haven't mentioned it yet because there really hasn't been anything to mention. I was invited for a phone interview which was rather exciting, but only the first step in the process. So I tried to temper my excitement. Today I found out that I was invited to the final interview. This is a slightly bigger deal. Still, 50% of applicants are invited to a final interview and only 11% are hired. Still, I think it is time to talk about it.

When I applied I waffled between two feelings, nervousness that I wouldn't even be called for a phone interview and then panic that I would be hired. And then I realized...

I would have to find a new neurologist.

That scares me more than anything. The thought of finding new doctors. Leaving my friends, sad. Leaving my family, sad. Leaving my coworkers, sad. None of these things are petrifying. What is petrifying is finding a doctor who knows what the hell he is doing when it comes to IIH.

I am not going to let it stop be though. If I am lucky enough to be hired we are going.

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.

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.

Post-Spinal Tap Post

And my pressure waaaas............

I DON'T KNOW.

Why don't I know?

BECAUSE I WAS LIED TO.

Hubs took care of my scheduling for me and he was told not once but TWICE that radiology did taps on a walk in basis. Now that might sound weird to some people, but it didn't to me because Dr. Cowboy did my tap while smoking a cigarette and knocking back a beer. Clearly they are no big deal. So I have the day off and I waltz into the hospital and tell them I am there for my tap and they're like, erm, we do these through OUTPATIENT SURGERY.

Otherwise known as not radiology and not on a walk in basis. So now I have to miss work and get the tap done on the 29th (I did smile because I would be getting my tap done on Rare Disease Day). Post tap they will make me lay on my back for hours even though Dr. Cowboy said that was completely unnecessary because they do the taps to lower my pressure which is counteracted by the whole laying on your back thing.

I am slightly annoyed.

I am also tempted to show up in the emergency room and lie, telling them I have double vision and just get the damn thing done there. This is all WAY more complicated than it needs to be. I told them to call Dr. Cowboy because I was sure HE would do the tap on the registration lady's desk before we had finished signing the papers. That is just how he is.

Mrs. Rocketship, get your staple remover sharpened because on Tuesday we are doing an at home spinal tap.

So Hubs and I drive home in rather low spirits and walk into the house to find the dogs have eaten half the bag of dog food and left only poop, pee, and vomit behind. They have been kind enough to spread it across two rooms so I had to go on a random bodily fluids hunt. It was kind of like an Easter egg hunt but far stinkier and with less candy. I am not in the best of moods at the moment. I think I need a nap.

Pre-Spinal Tap Post

Dr. Awesome wants me to note how I feel the day I get my spinal tap. So I am noting it here. I plan on making Dr. Awesome read my blog if only so he can see what he truly looks like on the inside.

I have inserted his picture again so you can all be reminded.

Today I feel... ok. I have some slight pressure in my neck and ears but no headache. I am tired, but my dogs were on their mom has work schedule so it is the kind of tired you get when you get up too early. Damn dogs. I do have floaters though. Lots of floaters today and my eyes are showing a tendency to find it easier to remain unfocused.

We are going to go around 1 I think so I will blog afterwards and tell everyone how it went.

I am nervous.

There is a large part of me that worries that I don't really have IIH. Isn't that silly? I have proof in the form of excess spinal fluid that is sitting on a shelf at the Doosh's place right now as well as fundus pictures of my swollen optic nerves but still a large part of me wonders if this is all in my head. I mean, I guess I know that I have have IIH but what if my pressure is normal? Then why do I feel like such crap? Is that all in my head?

On the flip side I am petrified that my pressure is high and that I will have to take a million grams of acetazolamide. Not only is that shit not cheap, but the side effects are less than awesome. And then what if that doesn't work? Suddenly I'm staring into the eyes of a shaved head and a shunt. Well shit.

So yeah, my emotions are mixed. Excuse me, I think I need to go and look at cute pictures on the internet for a while...

Sciency.

I feel like it is time for a sciency post but the problem with this is that I cannot think of another sciency topic to post about.

Let me think.

I am still thinking.

While I think I want you to look at this... Now what this is is a GIF of some dude with some form of hydrocephalus. That pulsing is his CSF and it's pulsing in time with his heart. Great, grand, whatever. I don't know why this is happening to this poor man. I hope he is better now.

What I do know is he has an incredibly large nose. This picture is on the CSF Wikipedia page and I always become mesmerized by the size of his nose. I have never SEEN a schnoz as large as that. It is nearly inhuman.

Then I start to wonder. Maybe all noses look big on MRIs. Maybe my MRI makes my nose look huge. I think this question needs to go on the list...

Dr. Awesome, does that MRI make my nose look big?

Tonight I hung out with the Willsters, lovely. Tomorrow I go into the city with the girls. I am slightly afraid I will get a debilitating headache and be SOL. I think I might need to come up with a headache plan. We will discuss on the drive up.

There is nothing sciency in this blog post. Deal.

Pain Management?

Last time I saw Dr. Awesome we talked about pain management.

Actually, we talked about the lack of pain management.

I have been told by a doctor that during his ER rotation he learned to tell the difference between a drug seeker and a person with actual IIH. IIH is sometimes used by pill seekers because it is an 'invisible" disorder. An actual sufferer will not ask for drugs because they know that they will do nothing. An actual sufferer will ask for the doctor to shove a needle in their back.

When I first got my neck ache I thought I had pulled a muscle. Around this time my husband had some dental work done. He was prescribed vicodin and I may have borrowed one or more. It did nothing. In fact it made it worse because all I wanted to do was lay on the couch and as we all know laying down increases pressure.

When trying to treat the headache pain doctors will sometimes prescribe medicines that are prescribed for chronic headaches. Apparently on occasion pain meds are given and they help with intensity, but bottom line, you HAVE to treat the pressure to treat the headache.

The other day in art the kids were told to draw their dream bedroom (the Stinker only wanted carrots and cucumbers in her's). I don't know if that was the inspiration or what, but I have been thinking a lot about my dream treatment. Obviously what I want most is a cure for IIH, but since they don't even know what causes it yet I figure I should set my sights a little lower. So, my ideal treatment plan...

I would like a noninvasive meter that can instantly check my ICP. If it is high I would like to take a pill or take a shot that lowers my pressure within half an hour. I would even take something that is installed through surgery and then checked in a non invasive manner. I am not picky. I would check my pressure a few times a day and correct as needed. I would be glorious.