Fishues

I haven't updated about the fish lately.

They are ok.

We had a bit of an ammonia problem so our fish turned black. They are slowly turning gold again. Poor fish.

I have been dizzy for the past two days. Vertigo. A common problem among those with IIH. We checked my blood pressure and that's fine so I am guessing it is a head pressure thing that is disrupting the fluid balance in my ears.

Bleck.

I am considering cutting off my head. Prom Date said no. Party pooper.

Let's Review

Today I have an eye doctor appointment.

Now.

This is making me nervous for a myriad of reasons, but mostly because he might tell me I am going blind. Do you remember your lessons from previous posts friends? Because you shooooould.

He is going to take a fundus picture of my optic disc which will tell him if the papilledema (swelling of the optic nerve) has gone down.

I am hopeful. Keep your fingers crossed for me.

<3

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.

Home.

I take a medicine for blood pressure.

My blood pressure has been waaaay lower since my IIH has been gotten under control somewhat and I am convinced that my elevated ICP had something to do with it. Surprise surprise, there have been no studies.

Even so, I plan on taking this blood pressure medicine until I die.

It lowers the heart rate as well, which calms me down. If I could take a medicine that kept my heart rate at like 30 I would. The day that must not be spoken of I got a stern reminder of what it was like before I started taking my anxiety medicine and my blood pressure medicine. It was not good. My heart was racing, there were butterflies in my stomach, there was a lack of focus on the world but a hyper focus on my problems, and there may have been a panic attack.

It was unpleasant.

Things are better.

I worry though (obviously). I worry about not being hired by TFA and then I worry about being hired by TFA. I have lived in this town my whole life. Everyone I see knows me. They know who I am and what I am about. If I say something outrageous they discount it because that is just how I am. If I do get hired by TFA I will have to start a whole new life and decide who I am.

And when I fall apart? There won't be anyone outside of my house to take me in and make me remember who I am and why I'm awesome.

Because I am awesome.

I'd Tap That

This spinal tap was silly.

It was waaaaaay different than the last two I got. I figure that since I am out of same day surgery and now able to sit up and type comfortably I will go ahead and tell you about it in more detail.

So this is my back. There are a few things you should notice about my back...

1. I have a cool tattoo.
2. I sneaked and put on my undies and sweatshirt which meant I had to sit up. I couldn't get caught or they would make me start my 2 hours all over again (joke).
3. There is a lot of green stuff on it.
4. There is a weird target like tramp stamp.
5. There is a flapping band-aid.

All of these things will be explained in time.

Let's start with number three (I think numbers 1 and 2 are self explanatory). That green stuff is left over from the topical antiseptic they used to make sure my back was sterile and hopefully prevent an infection at the puncture site. The lines are because I have a big butt so it kind of pooled... : (

For this LP (lumbar puncture - same thing as a spinal tap just a fancier name) I traveled to the Interventional Radiology department where they used a fluoroscopy machine to determine where to place the needle. Interventional Radiology is simply the place where they use the machines to help diagnose and perform certain procedures. They do angioplasty in this department because they can make it minimally invasive. A fluoroscopy machine is awesome. It takes basically a real time x-ray and projects it on the television so the doctor can see where he is sticking the needle. That is why I have the target on my back. That is so the doctor knew where to stick his needle.

I wanted to say "Oh yeah? Well, Dr. Cowboy knew where to stick it just by knocking on my back a couple of times." But I figured I shouldn't taunt the man with the large needle.

What does that leave us with? Ah yes, the floppy band-aid. Hubs just didn't remove that before taking the picture.

Another thing I wanted to note is why I had to lay flat for two hours. Two long hours. And not even prime time television hours. There are two main side effects post tap, headache and nausea. It is believed that these can be prevented by laying down for two hours, but studies cannot confirm or deny this.

How do I feel post tap? Eggcellent! I feel like my shoulders and neck are finally relaxed. I told the Hubs that although I have never gotten a massage I imagine this is what people feel like after one. It is delicious. I want to melt into the couch and sleep for days.

Happy Rare Disease Day!

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.

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...

Roy

This is Roy.

Roy is my rotting pumpkin.

Roy is awesome.

I got Roy on our class field trip to the pumpkin farm. I planned on carving Roy, but just never got around to it. So Roy sat on the steps like a good little pumpkin and he started to rot. Roy is still rotting.

I like Roy because he looks different everyday. He just keeps getting flatter and flatter and once he was oozing. That was a good day. Things are getting really exciting for Roy now. Somehow a little bit of his pumpkin skin peeled back and now you can see his spongy innards. It looks like the inside of a Nerf ball. Poor Roy.

Hubs wants me to get rid of Roy. I think that is horrible. I love Roy. I look forward to coming home to him.When I am at work I wonder about what he is going to look like that night. Hubs gave me a week to say goodbye to Roy. He told me it would by my responsibility to throw Roy away. I told him that was cruel and if he wanted Roy gone he would have to do it himself. He said Roy was my pumpkin and therefore my responsibility. I said I wasn't the one who wanted him gone. And so Roy has stayed and become my weird science experiment.

Roy is really fucking gross.

Tomorrow I have an interview with the local paper so they can do a story on Rare Disease Day (which is Feb. 29th). I am excited. It starts my four day weekend, which I am even more excited about. We are heading back to Big City Chicago this weekend to go to the Field Museum and this time I am letting the Hubs come along. It should be an enjoyable experience.

Spinal tap on Friday. I am soooo curious to find out what my pressure is. With all the rain we've been getting it feels like 103.

VD Day

My VD Day was lame.

That is all I will say about that.

Well, I will say that the Hubs got me flowers and they were beautiful and he is lovely and that was the only good part of my day.

There are lots of horrible things about IIH but at this very moment what is bothering me are my ears. There is pressure. It is funny because I really can't remember a time when I have gotten an ear infection. I am pretty sure my mother told me I have had them as a child but I never ever got them when I was older. In the past year or two I started to get this crackle in my ear occasionally and then I began to develop ear aches. I thought I was just getting ear infections. I bet they were early signs of IIH.

I always felt like a crazy woman if I brought up each and every little thing that was wrong with me at the doctor but now I wonder. If I had kept a list of all of these "little things" would we have known about the IIH sooner? Would it have mattered?

Apparently some people did a study on poor little guinea pigs and they found that there was a direct correlation between ICP and inner ear pressure. I think the only part I like about having IIH is that I am learning a ton about how my head works. Which at the moment is not well.

Another thing I wonder about. I know IIH is not fatal. I might go blind but it won't kill me. Still, there are cases where people die from elevated ICP. Like this thing... Cushing Reflex. I am thinking the reflex is not killing you, but it seems as if the high ICP is not helping.

Not to self, create a third column on the things to ask Dr. Awesome list, things that I want to know about brains in general. The first question on that list, has anyone ever died of elevated ICP and why won't I?

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.