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.

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.

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.

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.

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.

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...