Life Happens

Today I was at the store. I saw a gen. ed. teacher I worked with my first year out of college. She was with her husband, adorable little baby, and special needs son. Now I didn't even know this woman well enough to say hello, but it got me thinking.

Life happens.

All of your best laid plans can be disrupted in a minute. And all you can do is to deal with it.

No one asks for an IIH diagnosis.

But you can deal with it. I promise.

Don't let the forums scare you. Don't let the side effects scare you. Don't let the threat of surgery scare you. Just live your life the best you 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.

Bug

This is Bug.

Bug is the newest member of the family.

I love Bug.

So I was thinking about IIH today. I was thinking about who it typically effects. And I was thinking about how it typically affects women in their 20's.

I am a woman in my 20's.

And I can say that my 20's have been an interesting time. I think a lot happens in your 20's. I think many major life events happen. It makes me wonder about stress and IIH. It makes me wonder what role stress and anxiety plays in the development of IIH.

It makes me wish that people would actually research this condition.

Trust

I have been dealing a lot with trust lately.

I come with baggage. Lots of baggage. Sometimes it feels like I am dragging a U-Haul behind me. A little bit of my baggage is past relationship related. That's three or four boxes. Most of my baggage is IIH related.

By nature IIH can be a lot to take in. I look perfectly healthy. Most days I can do all of the things I could do before. I am stubborn so mostly I refuse to let it stop me. But there are times when it does stop me. There are things I can't do.

The children question.

I can have children, but they might have IIH. I can have children, but I might have to have spinal taps each week because they don't know if my meds are safe to take until 20 weeks. I can have children, but I don't know that I will be able to SEE them.

The fact that the acetazolamide could stop working and I might need a shunt. The fact that the shunt might not work and then I won't work.

Is that fair to saddle someone with?

Most of the time I feel like the answer to that question is no. But luckily it's not my choice. I don't get to decide what someone else can live with.

And that's where trust comes in. Which is slightly scary for me. But I am getting ok with it.

And just a bonus... Prom Date on prom.

: )

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.

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.

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.

Let's Dance.

There is nothing in this blog post you haven’t heard before.

Considering the great expanse of time and humanity, all the stories have been written, the songs sung, the finer points made, highlighted, underlined and punctuated with an exclamation point.  Dust thou art, and unto dust shalt thou return.

You were born. You fell in love. Your heart was broken. You did something you thought you couldn’t do. You failed miserably. You said something hilarious and forgot about it 10 minutes later. You felt the bittersweet pain of empathy by crying when someone else hurt. You experienced a loss so profound you didn’t know how to cry.

Somewhere out there, in 2005, a 21-year-old named Bridget was diagnosed with Stage IV breast cancer. She was falling in love with a man who would love her back – even through chemo, baldness, clinical treatments, temper tantrums and fear. When she was diagnosed, he told her to put on a party dress so they could go out to dinner and discuss how they were going to deal with it.

If that isn’t amazing enough, Bridget lived in a society that stamps pink ribbons on t-shirts, novelty socks, key chains, and yes, even packaged food. But a few months before her diagnosis, medical professionals told her she didn’t need a mammogram when she found a lump in her breast. They told her it was just fibroma, nothing to worry about.

Only, it was. Her family thought she looked a little yellow when they came for her college graduation. Jaundice and breast cancer that had spread to her liver.

And so, the girly-girl who was so lucky to have fallen profoundly in love was left feeling so very alone as she went to one breast cancer event after another populated by grandmas and the grey-haired. She cried and felt much older than 21.

The general line of her story has been traveled by hundreds/thousands/bajillians of women who loved and were loved but still were diagnosed with a horrible disease at a very unfair time. I like Bridget’s story, though, and I’m still reading it.

Bridget writes one of my favorite blogs, http://www.mybiggirlpants.blogspot.com/

Decades before Bridget was diagnosed, Susan G. Komen was diagnosed with breast cancer in 1977. She decided to get through treatment quickly so she didn’t upset her kids, had a mastectomy, and was told by her surgeon she was “cured.”

Only, of course, she wasn’t. 

As she was slowly dying, she read to children in cancer wards in Houston and Peoria (where she was receiving treatment herself) and created a laundry list of things she would do when she got better: paint the waiting rooms and chemo wards a cheery color, add some classical music, have a luncheon to raise awareness about some new mammogram technology. (Because that’s what everyone wants to discuss over lunch?)

She died on Aug. 4, 1980. Her sister, Nancy Brinker, didn’t just have a luncheon. She started an organization that would host a myriad of walks, races and fundraisers and distribute more than $1.5 billion for breast cancer research, services and advocacy. Brinker had made her sister Suzy a few promises – and kept them.

You’ve probably heard of dozens women who sparked movements that would become profound, cliché, mocked and revered past anything their originators likely imagined. I recently bought Promise Me, the memoir charting Susan G. Komen’s story with the path of the non-profit organization. I’m still reading it.

Susan G. Komen died a year and 20 days before I was born. She died five years, three months and 22 days before youdownwithptc.blogspot.com’s author was born. If you know youdownwithptc.blogspot.com’s author at all, you probably know that 26 years after her birth, the axis of her world shifted.

She befriended me. Wills.

This, too, is a story you’ve heard before.  Two college-educated Midwestern women bump into each other over and over again in a small town. They utilize hyperbole and sarcasm to make fun of everything they think is funny, boring or downright horrifying. Suddenly, they find themselves explaining each other’s jokes to people. 

There also have been a few instances in which I suggested something as a joke, she thought I was serious, and she charged forward with such abandon that I didn’t have the heart to tell her it was a joke. (I’m sure she’s done the same to me. In fact, I know she has. I fall for it ALMOST EVERY TIME. It’s cool.)

Anyway, that’s not really what rocked youdownwithptc.blogspot.com’s author’s world. 

She was diagnosed with Idiopathic Intracranial Hypertension – which essentially means her body doesn’t absorb spinal/cranial fluid as quickly as it should, so pressure builds up and causes all sorts of problems. Untreated, it causes blindness. With treatment, it still causes severe headaches.

Since then, she’s baked cookies. Started this blog. Been interviewed by local media. Brought Rare Disease Day (which, strangely enough, is NOT on Hallmark’s radar) to our attention. There’s been some vague talk about a fundraising walk or Bags for Brains or something.

She’s also spent some time talking about the lack of research focused on her disease, the lack of disease-specific medication or support groups and why she cannot possibly have children any time soon for fear they will be diagnosed with IIH when they are 26. Then, of course, they will hate her.

Sometimes she feels alone. Sometimes she gets sick of talking about her condition. Sometimes she wishes more people were talking about her condition. I think she sometimes cries in the car.

I, too, have had a few quiet moments when tears trickled down my cheeks on her behalf. Empathy is like that: You know you truly care about someone when it hurts you to see her hurt. And, well, damn, it’s different from the empathy you feel for people on TV or in news articles.

She doesn’t occupy the same state as Bridget, or the same decade as Susan G. Komen. I don’t believe she has a sister, and I’m not sure how seriously anyone should take her brother’s promises. 

What I do know is this: She won’t be the last person diagnosed with something weird, painful, and annoying, and she won’t be the last person to declare – as she did on Feb. 23 – that she was going to make sure some relatively unknown disease becomes as well known as cancer.

But she’s going to do it. Or have a hell of a good time trying. 

And, from time to time, I will be there. I’ll be painting hospital waiting room walls red (or purple). I’ll be planning luncheons to talk about brain machines (or whatever). And for goodness sake, I’ll go ahead and say it now: What would be more perfect to serve at Bags for Brains than Jell-O shots molded like brains? 

Keep reading. This story ain’t over yet. You haven’t heard the last of this girl. And you’re certainly going to hear more about IIH.

Dust thou art, and unto dust shalt thou return. But thou might as well dance in the dirt while thou art here.

Excitement

I am wearing one of the Hubs' shirts. It smells delicious.

SO! Got a message on the bookface today from the NewsMan. He got an email from someone who read my article who's daughter has IIH. Terrible that she had IIH, but cool that the article did what it was supposed to do! This poor girl has been having a rough go of it lately and so I am going to call her tomorrow. Hopefully we will be able to get together and talk about how much this thing sucks.

I took a nighttime nap tonight. I am a failure.

Pretty awesome day for me on the IIH front. Nice sunny day which meant nice clear head. Exhaustion reared it's ugly head about 6 though. Sometimes it happens that way, I'll be fine fine fine fine fine and then all of a sudden I am falling asleep. I am still groggy, but that could have been the deep sleep.

I had a dream that I was asleep and someone knocked on the door. I had to let them in but by whole body was asleep so I was dragging myself to the door. It was incredibly frustrating because the person was rather upset with me.

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.

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!

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.

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.