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.

Rare Disease Day

Welp... this is it.

This is the day we have all been waiting for.

Slightly anti-climatic? Maybe.

I thought it might be nice to link to some blogs about other rare diseases. Contrary to what the Hubs might tell you I am not self centered. I want to bring attention to all Rare Diseases. I also want to help those who are searching for a voice find it. There is nothing more frustrating than feeling like you are shouting to an empty room.

1. Cyclic Vomiting Syndrome - this one was in the Patch article, but this is a different family. Their little girl suffers from CVS and she has just been officially diagnosed by a Doctor who had it when he was a child.

2. Marfan Syndrome - This is the blog of a mom who's little boy has Marfan Syndrome. This has always been interesting to me, maybe because I am so short. They think President Lincoln had it.

3. Fragile X Syndrome - Another Mom blog but this one is interesting because her sons are grown. You can find out more about Fragile X <---there.

Some interesting things I found out... AIDS is a rare disease as well as Cat Scratch Fever.

I have been sick for the past few days and it has kind of made me cynical and crabbier than usual. I started to think, who the hell cares about Rare Disease Day? The answer is me. I care. I care a lot. Having a rare disease is isolating. There isn't a support group for me. There aren't people out there who know what I am going through. These people understand that aspect though. They understand what it is like to be frustrated because there isn't a cure. There isn't something to fight. There is something to learn to live with. There is something to learn to cope with. There are questions that don't have answers and futures that are uncertain. So even if someone can't understand IIH they can understand having a rare disease. More than that, while someone might not pay attention to a couple thousand they will pay attention to 1 in 10 Americans.

Happy Rare Disease Day! Think of me today as I am getting a large needle shoved into my back to check my pressure. Happy Spinal Tap day!

Roy: Chapter 2

My family experienced a tragedy this weekend. It was slightly heartbreaking, but a large development in the life and times of Rotting Roy.

I knocked off his stem.

It was such a nice day outside on Sunday that I decided to get my bike off the stand and take that baby outside. I put my Bobby Kindal and my cell phone in the basket and I went to roll it down the exterior stairs. Otherwise known as Rotting Roy's domain. As I was trying to get the bike down the stairs we had a run in with Roy. He did not survive intact.

Poor poor Roy.

On the plus side for you, my dedicated readers, it inspired me to create another Roy post. A development this big just must be documented.

Roy looks terrible.

Just wanted to remind you what Roy looked like in the
previous post.

He looks slightly flat, and white, and moldy. His skin has also taken on a papery quality. I am concerned about his health.

My cookies were a huge hit at school today. I was told that people were passing around my file as well as eating so hopefully they learned something. My nose is still full of snot. Tomorrow is my spinal tap. I called and it is still scheduled, but no one seems to know what to do with me.

Story of my life.

Sick Day

Today I was sick.

My cold was bleh but my head. My head. My head.

I think it was a combination of sinus headache and pressure headache. All I know is that it was like it was caught in a vice. So I called it, took a benedryl, and proceeded to pass out until noon.

Then I managed to bake 5 and a half dozen cookies for Rare Disease Day.

Bleh.

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.

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???

Karma

I used to believe in karma. I thought there was a balance to the world and that things happen for a reason.

I don't think I believe that anymore.

I have started reading blogs. Mostly medical blogs. Mostly blogs about people who are worse off than me so I can keep everything in perspective. First Wills pointed me to this blog. It is about a girl who is around my age and has Stage IV breast cancer. It is sad and happy all at the same time. Then there is this blog. It is called Jamsie Beats the Tumor. It is about a baby boy who gets a very aggressive and rare tumor. They start of with Day One, diagnosis and James dies on Day 24. It is heart wrenching.

I am thankful everyday that I do not have cancer. If I had a choice between cancer and IIH I would pick IIH most every time. I mean, if I had like a little mole that could be removed and they could promise it would never come back I would probably go for cancer. Still, cancer is terrible and horrible and I wouldn't wish it on my worst enemy.

I would kill for their support groups though.

Even if you have a rare kind of cancer there are commonalities that you can use to connect to other sufferers/survivors. It is also so familiar to people. If you tell someone you have cancer they kind of know what you're going through because it is slightly similar for everyone. Everyone knows of someone with cancer. Everyone knows the side effects of chemo. Everyone knows how much it sucks.

I am going to do that for IIH.

Everyone is going to know what IIH is. That is my goal.

Wear your pj's inside out for me. I want a snow day tomorrow.

Dedicated to the NewsMan

This post is dedicated to the NewsMan.

He wrote the BEST piece about IIH and Rare Disease Day ever (besides the other article that was written about it and posted on the Patch).

The lede? "YouDownWithPTC is a rarity, and it's not just because of her personality." I think that is going to go on my tombstone.

What a great end to a shitty two days.

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.

Lazy Days

no idea who made this. sorry.

This one here. This describes my Friday night.

I would like to thank the Presidents of the United States of America for existing so I can have this day off of school to bask in the sun with two small beagle puppies.

I would not like to thank the people from the highway widening commission who decided this would be a great day to chop down the two large trees in my yard forcing me to listen to the sound of chainsaws. That kind of counteracts any relaxing gained from the basking. How selfish of them.

A small boy's face

Buster (left) and Haylee (right).

Sunny sunny day today. I have a walk at the forest preserve penciled in, but I am concerned about the mud factor. It is incredibly muddy. It would get my away from the sound of chainsaws though. I don't know that the dogs will want to go. They seem pretty content to bask.

Rare Disease Day is in 9 days. I hope you have your plans all worked out. If you need something to do you can some watch me get a spinal tap. I would not mind.

Housekeeping...

I have been playing around with the features on the blog and have added two new gadgets...

1. You can now subscribe by email. It has come to my attention that to follow me you have to have one of a specific list of accounts. Some people don't have one and so I added this gadget. If you sign up you will get an email when I update. I have no idea what the email looks like but I can tell you that they say they will only email you if I post.

2. Some people utilize RSS feeds. I added a gadget for that as well. You can subscribe to my posts or comments. It'll make it easier for you to add me to your RSS feeds. Which you should. Because I am awesome.

Also, due to peer pressure from Spicy Ramen, Sprockets, and the Hubs I had to change my font. Apparently boys do not like the old font.

<3

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.

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...

Grrrrrr-eat Day

Today was a good day. Things were just kind of coming up Me.

I woke up to a text from my brother. Well, really a series of texts, telling me how much he liked my blog. It made my day. My brother (we will call him Doosh) and I live rather far apart and as such are not super close. We can't hang out on the weekends but when I do go visit we have a great time. He will not only have my back if someone is giving me shit but he will also tell me when I am being an idiot. Both excellent qualities in a brother. So what he said meant a lot to me and it made me feel warm and fuzzy inside.

It was also a half day at work, which is just glorious.

I had my interview with the local paper and that went really well. Of course I knew it would because the NewsMan is such a great guy. I don't know when the article will run, but I will scan it in here so you all can see it.

Hanging out with Wills always makes a day worth while.

It is also insanely nice out. Sunny and whatnot. I feel like a million bucks.

<3

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?

Flutterbies!

Yesterday we went to a nature museum. I went with Wills and some other friends... they need names... Sir Cats A Lot will be one aaaaaaaaaand City Girl another. I am sure Sir Cats A Lot will be shortened to simply Cats. She is also not a boy so where the Sir came from I can't really say.

Not only did we see lots of awesome nature things AND hang out in a butterfly garden but we went to an awesome Turkish restaurant. Now if any of you know me you know I am picky. I eat like a five year old and I am ok with that. Still, when the food looks like this and the restaurant is this comfy... You can't really help but be impressed.

The waiter was also super cute. I thought about asking him to snuggle up in those pillows with me and take a nap but I was told that was inappropriate.

At this all women's gathering we were discussing food cravings and I promised to link to what you really want when you are craving certain foods. I figure all of you guys might like it too, so here it is. Basically, I need more calcium.

In IIH news the day was pretty much a success. I started to feel rather tired at the end, but I am also a lazy ass who never leave my house so that could play a large role in the problem. No headaches to speak of. I was a little nervous as this was the first time I had ventured out into the hustle and bustle of the city without the Hubsters along since my diagnosis but it all went off without a hitch.

Today not so much. Cloudy and gross and that's kind of how I feel inside. Mostly my neck region. Also I am very tired. Same old, same old.

Also, I do feel much better about my MRI fears. Look at this person. Their nose appears to be a totally normal size!

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.

Life with IIH: The Musical

Featuring songs like... Why is this vice squeezing my head? Who is shoving an ice pick into my neck? Why do I see two of everything? My life won't go on. and other great musical numbers!

I am going to put it on at the Follies. What do you think?

My husband is sick. He has a stomach bug. I am trying to be thoughtful and caring. The problem with this is that I feel like I often expend much of my positive energy at school and so when I get home my nurturing nature is kind of used up. In addition to this I am exhausted when I get home because of the IIH or the meds or the winter or something and so I just don't have the energy to baby anyone, including myself. I am a terrible wife.

The teacher I work with (who I will have to think of an awesome blog name for) was sick. As I have my bachelor's I subbed for her today. Our boys are so friggin cute. The Stinker (my student and a girl) is of course adorable but there is just something about grubby little boys that pulls at the heart strings. Especially when they do not like to be touched and they give you TWO hugs in one day even after you put them on yellow.

What do you think my dog is eating off the bottom of Awesome Husband's shoe?

Bags for your Brain

Sooooo...

I have been thinking about doing a fundraiser/awareness raiser for IIH. I initially thought a walk but that seems like a lot of work for not a lot of reward and not a lot of opportunities for education. So I kind of discarded that idea.

Then I couldn't figure out what to do. I had all sorts of ideas, but none of them were good. People were laughing at me. I called my mom and asked her and she came up with a GREAT idea. A bags competition! I am thinking we might even be able to do that in our own yard.

Now I just need a clever name.

It's because you're fat

Comic by Joel Pett

There is a lot of noise made about weight and IH. Typically weight is only considered a factor in idiopathic IH (the kind I have) which is said to mainly affect "obese women of childbearing age" (PS, this is now how I describe myself to people). BUT as 2/3 of the population are overweight and not many have IIH there are clearly other causes at play here.

Still, weight loss has been known to decrease papilledema as well as cause remission. So if you have IIH it might be a good idea to lose a pound or two or 40. You know, whatever you need to lose. On the flip side, sometimes people lose weight and see no change in their IIH. The thought of that kind of reminds me of that comic though. I mean, even if it doesn't help the IIH you should look better and be healthier so it isn't all for naught.

I am not obese, but I could stand to lose a pound or 20. Dr. Cowboy said that I really didn't have to worry about the weight but Dr. Awesome (after looking up my BMI and hemming and hawing which is just one of the reasons we call him Dr. Awesome) said that I probably should try. I just started seriously trying this week. I couldn't stand the thought of feeling like complete crap because of IIH in addition to feeling like complete crap because I am cutting calories. The time for hesitation is through though. I need to jump in with both feet.

I am hungry.

Dr. Awesome

IH is different for everyone. Some people get a spinal tap and never have elevated pressure again. Some people don't respond to drugs and have to get a shunt. Some people are so debilitated that they cannot work. It varies from person to person. There are many things I wasn't told about IH. I learned about many of these things using my best friend google, but you have to take all of that info with a grain of salt. Because again, no one is the same and everyone on the internet is an expert. I include myself in this. I do not have a medical degree and although I have been watching medical shows since Dr. Carter won my heart on ER we can't count that as experience. No matter how many people I have correctly diagnosed on House I may be wrong about the facts occasionally.

Dr. Awesome (dramatization) credit

My current neuro, let's call him Dr. Awesome, was incredibly positive at my first appointment. I had just been diagnosed, was just starting to feel the affects of the meds, and so he stressed how good I was going to feel. I had expressed how anxious I could be and he for sure took the right tactic and put everything in a positive light, "I'll see you in about three months and the side effects will be gone and you hopefully won't be experiencing any symptoms." I knew even then that was unlikely because I had read a thing or two on the interwebz but it was for sure what I needed to hear at that point in time.



When I saw him this time he tried to take a more serious tone. I didn't let him. Screw that shit. If I am going to be dealing with this crap for the rest of my life we are gonna laugh at it. So after much face palming and head shaking he told me the plan, since I am still showing symptoms I will get a tap to see what my pressure is now and that determines what we do with the meds. Awesome. I love a plan. As long as I feel like we are being proactive I hopefully won't spend anymore time crying in the car on the way home from work.

Dr. Cowboy (dramatization) credit (or to buy DVD)

The one time when I did allow things to get somber was when we were talking about pain management simply because there is no pain management. You can take pain meds but they are not going to help if your pressure is high. So the only way to control the pain is to control the pressure. I was prescribed a migraine medicine by Dr. Cowboy (new name for hospital neuro) and it works for unrelated headaches but when I get the ache in my neck that builds and builds until I want to cry all it really does is make me not care so much because I am a little high. So I said no thanks to more pain meds and Dr. Awesome suggested straight Advil which I agree with because if you're gonna try and go for a placebo effect it may as well be done with something non addictive.

So this is where I am at. Planning on an LP and excited to know my pressure. Happy Sunday!

Cult Leader

I have followers!!!!!

I have secretly felt like a complete and total failure because I have no followers. Now I have two. And imagine my surprise when they weren't my Mom and the Willsters. They are strangers! People I do not know. While I love my Mom and the Willsters and them following me would be so sweet it is not as exciting as having people I don't know interested in IH.

So welcome guys. I am so excited to have you on board! I promise to be a kind and somewhat sane leader. I will never serve you Kool-Aid.

<3

Wanna Puncture my Lumbar?

Oh lumbar punctures. How I love thee.

LP's are pretty awesome. The ones I get are therapeutic as they are used to drain CSF from my poor little spine. Walking out of an LP is the best I will feel for weeks. My head will feel light. My neck will not hurt. My vision will be crystal clear. It will be glorious.

It will last a day.

So how do they perform an LP? First they inject you with a local. Locals are silly things. They clump up in your skin so sometimes they try and stick the needle in and it still hurts. So then they pull the needle out and moosh it around a little bit.

Look over there! ----->   also... credit

This is where they stick the needle. All of your important bits (the nerves that control things like your legs) are all higher up so there is really no risk of them severing them and you peeing your pants. They do occasionally touch a nerve end on accident because everything is floating around down there but you are supposed to tell them that you are numb and then they move the needle and all is grand again.

So, they stick the needle in and the fluid drips out which provides temporary relief. They also test it to make sure you are healthy and measure the pressure so you can brag to all of your friends with IH. Oh wait, those people don't exist. So I guess you can tell yourself while looking in the mirror.

Just a warning, volume to 11 jokes does not make the person doing the tap laugh.

Also, there was a lot online about how you are NEVER supposed to do an LP on someone with high ICP. While I have been told that my hospital neuro was a bit of a cowboy, IH sufferers are the exception to that rule as they are doing them to lower ICP. Hospital neuro knew what was wrong before he stuck me with his needle of doom.

On a completely unrelated side note, an Activia commercial was just on. How do people manage to eat 3 of those a day?

Happy Friday.

I am Famous!

Our local Patch wrote an article about me. You can read it here. It talks about myself and two others who suffer from rare disorders. It was great to read because although they have different conditions there are a lot similarities in the way we feel about our conditions and how they have affected our lives. It made me feel like maybe I am not going crazy.

Right now I feel like a nap.

The weather is crap today which is making my poor body feel terrible. The fleece sheets and a Unisom are calling my name but I would like to stay awake and watch my favorite Thursday night television shows.

My neuro told me that I reminded him of Zooey Deschanel's character in New Girl. I nearly swooned. That is my favorite show ever and I am pretty sure that Jess is my biggest hero. I need more brightly colored skirts if I am going to emulate her though.

Under Pressure

Please watch the embedded video. Sing if you'd like.

I saw the neurologist today.

He said that it sounds like my pressure is still high and that he wants me to get a spinal tap. He seemed to be scared that I would be upset about that. I was ready to hop up on the table and get it right then and there. He said he would be more comfortable if I would go to a hospital. I said he was a pussy.

Ok, so some of that recounting may have been exaggerated.

I go back in six weeks (after the tap) to talk about the results of the tap and to see what we can do about getting my pressure down and hopefully taking care of some of the symptoms I have been having. I am really curious to see what my pressure is right now. There are days when I feel like it is 6 million.

Doesn't it seem like there would be a better way to monitor my pressure? Doesn't it seem like having to schedule an appointment at a hospital to get a needle shoved in my back is inconvenient? I AGREE! That is one of the IHRF's goals. They want to find a less invasive way to monitor ICP.

There is another way. I could have a catheter put in my head and then they could monitor it from the tube that hangs out of my head. I don't know about you but I think that is an even worse option. Typically this method is used in people with traumatic brain injuries who need to have their pressure closely monitored.