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.

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.

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???

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.

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.