Last Night

Terrible night.

I had to take two Benedryls so the sleep inducing powers would over take my headache so I could sleep. It was a couch night for sure. I basically sat straight up and it still felt like there were nails being driven into my forehead.

Stupid weather.

Stupid IIH.

Stupid.

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.

Blood Pressure

So I saw my PCP the other day.

He is super nice.

He is the reason that I was diagnosed so quickly and also the reason, in a round about way, that I ended up with Dr. Awesome. He needs a name but I do not have the mental capacity to think of one right now. So that will have to wait.

But anyway, he took my blood pressure and it was slightly elevated which it typically is in his office. So we got to talking about it.

Turns out, IIH can cause elevated blood pressure.

He said that the brain needs blood and increased ICP makes it harder for the brain to get blood. That means your body has to work harder causing high blood pressure. He said it is something we would have to monitor but because of my strong family history I most likely just have high blood pressure.

Still, it's interesting.

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.

Bummer Summer

A public service announcement...

TODAY IS NOT FRIDAY.

Even though it is beautiful and you felt like doing nothing at work today and you spent a half an hour down by the pond watching some weirdo hopping up a hill it is not Friday. It is Tuesday. Tuesday. It is also a full work week. So get used to it.

Today. Oh today. It was gorgeous but I had a headache. On and off all day. Lots of floaters in the morning. Stupid. It seemed to go away in the afternoon but then it came back when I rode my bike. Exercise induced headaches. Have I told you about these?

Certain exercises, like schlepping your bike up a hill, tend to increase intracranial pressure. YES! The one benefit to this condition. An excuse not to exercise.

So when we were hanging out the other night Wills wanted me to address something in my blog. She said that she wasn't clear on how this whole thing started. She knew the history with the hospitalization but she was curious to know when the symptoms first started.

The answer is I don't know.

There are indicators that it may have been something I have had since high school. Or it may have been something that just started. We don't know. Idiopathic means without origin which means we don't know exactly when it started. We don't know why it started and we don't know how it started.

Have I mentioned you can donate? They also have a store. There is a really pretty bracelet.

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.

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!

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.

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.

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...

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?

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.