The boyfriend formarly known as Prom Date

I met Prom Date many moons ago. Back in the heady days of freshman year of high school. I was just getting out of my awkward phase and realizing hey, boys really do like me! And Prom Date was a senior with a thing for girls with crazy colored hair.

He destroyed my bridge.

We lost touch after he left school but kept bumping into each other as it's a small town and a small world. It's so funny to hear about those interactions from his point of view. We look at those memories so differently.

Prom Date and I starting hanging out again because of a mutual friend. Little did I know he was following my tale of IIH woe on facebook and madly googling information that I was too scared to look up myself.

The first time I went over to his house with said friend he looked me right in eye and asked, "are you happy?"

To my dismay I couldn't answer that question. I had no idea if I was happy. I hadn't thought in those terms in so long. So I thought about it. And I thought about it. And the answer was no. I went back to Prom Date's house and I really talked to him. I talked about why I wasn't happy and he reminded me it was ok to tell the person you were with what you needed. He reminded me what it felt like to stand up for myself and he reminded me that sometimes we all needed to be a little selfish.

So he needs a new name. This has been a long time coming, but I was waiting until everything was all said and done.

A new name for Prom Date... how about BiFF? Because he will always always always be my best friend. Always.

<3

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.

Moments

For some reason I feel the need to hold on to certain moments lately. I feel like I have to tuck them away somewhere or they will be gone forever.

Promises whispered in the dark.
An arm around me in the kitchen.
Flowers on a car seat.
Eyes constantly scanning the crowd for me.
Every single ambush.
Super cold cups.
The smell of metal on hands.

I have this feeling of sand slipping through my fingers. I worry that one day I will look down and it will all be gone.

Sometimes you have to walk uphill and it is no fault of your own. Sometimes when you're used to vacant eyes and empty promises the real thing seems like a mirage. Sometimes you get too caught up waiting for the other shoe to drop. Sometimes you need to make up for someone else's breach of trust.

That is not fair.

But thank you.

But wait... There's MORE!

I saw the neurologist yesterday.

Dr. Awesome was awesome, as always.

We chatted a bit. I had to push and pull him. He did not tickle my feet. He peeked at my eyes. Asked me about headaches and then told me he didn't need to see me for 5 more months. After he had coaxed me out of the corner and calmed my weeping he explained that while he WANTED to see me everyday there really was no medical reason. So then I began to fake double vision. He did not buy it.

So yeah. I think I am officially managed.

This is awesome.

Eyeballs

I know I said I was going the the eye doctor weeks ago, but I lied.

I went to the eye doctor but the appointment had been made with the wrong person so I had to reschedule. Today was the day I rescheduled for.

Dr. Straightman is pretty awesome. He is super nice and I think interested in me. I am rare you see. So he did the whole standard exam and my corrected vision is still 20/20. This is very good as it means the swelling that I had did not cause me to lose vision.

Then he looked at my optic nerves. I have such big eyes that they don't even have to dilate me. There is NO SWELLING in either nerve. This is awesome. The headaches are manageable and there is no swelling which means that even though my pressure is slightly high I can stay on my current dose of acetazolamide.

The only negative was that he saw some permanent damage to my left optic nerve. I guess something about the color indicated there was slight damage from how swollen it was the first time. He said that it probably would hardly be noticeable.

So all in all a great appointment.

Happy Saturday! Or as I like to call it, nap day.

I am a REAL person!

I got a car!

It is white.

It is a Ford.

It is Taurusey.

It will fit children I am babysitting over the summer. It will also get me to and from work with seemingly no problems. It makes me feel like this...

Last night I ran to the store! I bought yogurt. It was exciting.

I am listening to the girliest music right now. I also painted my toenails hot pink last night. I believe I am reverting back to being about 16. Maybe it has something to do with living with my parents.

Happy Thursday! : )

Few and Far Between

Sometimes you like songs because you hope someone else will identify with them.

My updates have been so few and far between because I have been doing so well! So few headaches.

Thursday night I didn't make it to the pharmacy in time and I was completely and totally out of acetazolamide. This meant that I missed my dose of acetazolamide at night and then the pharmacy doesn't open until 9 so I was going to miss it in the morning as well. : / not good. The last time I missed acetazolamide was when I was first diagnosed. There were allergy issues and so we had to wait to hear from the doctor to make sure everything was ok. I ended up in the hospital.

Things were even more complicated because I still don't have a car. So it wasn't like I could sneak out and pick up my prescription at the pharmacy by school. Plus my mom was out of town for the week. So she couldn't even help me out. It had the potential to be very very bad.

Then Prom Date stepped in.

"So do you need to me to get your prescription when the pharmacy opens tomorrow?" nod.
"Do you need me to bring it to school?" nod.
"Are you going to be ok until then?" shrug.

He has been wonderful this week. Not only carting me back and forth to school but also trying to help me find a car. Both he and TJizzle have gone a long way to helping me start rebuilding my confidence that has been kind of shattered.

Things tend to get messed up in your mind even if you are the one who walks away.

But now I have not one but two leads on cars and an interview for a summer job on Tuesday. I am pretty excited about it.

Happy Summer Saturday!

Wake Up

I keep getting this feeling that this is all a dream and I am going to wake up.

I wouldn't change a thing.

I have lost weight. Maybe 10 pounds? So I don't know if that has something to do with how great I feel lately. Apparently the bigger thing is a restriction in sodium and a reduction in fluid intake, which is interesting since I am on a diuretic. I don't know. All I know is that I feel so much better.

I got my hairs cut. Wanna see? I'm pretty.

Fun night last night. I hung out with a super old friend from high school. I think I'm going to name him the Vampire. I got completely smashed on two screwdrivers. I got home an hour later than expected and my mom had called the police. I am not even kidding.

I need to move out of here.

Move over TJizzle, I'm hopping in!

Change

A week ago today I moved out of my house.

I am not going to air my relationship dirty laundry here, but I am not going back.

Since leaving I have not had a headache.

I have people to thank. Prom Date, TJizzle, Mom, Step-Dad, Mrs. Rocketship, the Doosh. <3

Happy Mother's Day.

Growing up

I don't buy any of that new age crap. I typically don't go in for inspirational sayings. I think when shit gets tough either you suck it up and change something about it or you stop complaining.

I have always picked my friends with pretty much one things in mind, do we laugh? If the answer is yes then for sure we can be friends. If the answer is no then we prolly aren't going to get along. I know, I'm not very picky. I can take a lot of shit. I can be pretty much whatever you need me to be, as long as you make me laugh.

But something about that has changed. I don't know if it's the diagnosis or simply a result of getting older, but I have found myself craving relationships that are far more real than that. Friends that will not only talk but listen. Friends who will offer advice and assistance when needed and sometimes just listen to me bitch about what happened that day.

It's required changes on my part. I have had to learn to trust people. I have had to tell people what is really going on and not just the rosy picture that I like to paint in my head. And in return I want friends who will do the same with me. Friends who will trust me with things they keep a secret from other people.

And I feel better. About my life and the scary unknown. I feel like I can face it because it's not just me and Hubs against the world. There are others who will hold my hand and help keep me going.

And there are still those people who I just laugh with. Because they are fine too. There is nothing wrong with that. But I am no longer scared that the people who have stuck around are going to run because I share something real with them because if that happens it is their problem not mine.

: )

Carry On.

This is my new favorite song.

I heard it last night.

It was like... fate... or something.

This is the acoustic version. Which makes me smile even more.

<3

Bummer Tummer

I kind of have a tummy ache. I think it is from the Hubs. Thanks Hubs.

I had a pretty awesome day. It was an early dismissal so the Hubs and I drove out to get my birth certificate as I needed a copy. We went to the wrong courthouse but ended up eating lunch at this terrible little diner. While disgusting for the most part they had the best fries. If you know me at all you know that french fries are my favorite food.

Only at this particular restaurant they did not call them french fries. Oh no. They were called...

Freedom Fries.

I had a tingly face all afternoon. I actually took a nap so I didn't have to feel the tingling anymore. It was my temples and around my eyes. My lower eyelids. Down into my cheeks. Kind of terrible. OK, super terrible.

There are a lot of things that I hate about IIH but the tingly face is the worst. It is impossible to ignore because it tickles and it kind of makes me want to cry. I was laying out in my hammock snuggled up in my favorite blanket with the sun on my face and I was totally distracted by the pins and needles around my eyelids.

Stupid acetazolamide.

Then I google it of course just to see if it is normal and I find that yeah, it is. I also find that some people feel it when their shunts malfunction. And then I remember how lucky I am.

Genius

I have the best job in the world.

Today one of the kids was wearing a sweatshirt that had a missing the zipper pull. We shall call this particular young man Dimples. He was stuck in his sweatshirt so I put a paperclip on there so he could get in and out. You would have thought that I split the atom.

I felt pretty awesome about myself.

I forgot to take my pill today.

Never again. I think I have to get a pill case and put one of each in there to keep in my purse just in case. I assume I will have to rotate stock every once in a while.

How long does it take for medicine to go bad?

This week there are only two things I am annoyed about. I think this is pretty excellent.

Happy Tuesday!

The Wait is Over

So the wait is over.

I was not offered the position.

And while I keep telling myself that is ok there is a part of me that is totally not ok with any of this.

I just don't understand how much bad news a girl can be expected to take before she flips the hell out. I found out the answer last night. Three major pieces of bad news in 4 and a half months. That is how much it takes before a girl flips the hell out.

I flipped out.

I never flip out.

Ok, that is a lie. I freak out all the time. But I freak out in private. Typically in my car. Typically because I am jealous of people who can relieve their pain with a pill. Typically because I miss my life before when I felt like a normal girl.

Last night was not in private.


And I try to put a happy face on it because no one likes a cry baby. I don't like a cry baby. I like to make fun of my problems because then they are not so big and scary. It's like imagining a spider wearing polka dot boxers and a clown wig. As soon as you can laugh at it it's not so scary anymore.

So yeah. I thought I was fine because I was laughing. And I am fineish. And I will be finer.

Good things in my life...
The puppies who are snoring next to me.
The husband who loves me
The mom who feeds me
The friends who take care of me
The doctors who are knowledgeable about me
The Stinker and all of the other kids who I already make a difference for every day

Maybe my mom was right. Maybe the universe is trying to tell me something. Maybe I am not done here. Who knows.

Good Day

Today was a pretty good day.

Did you know that they are doing all sorts of construction downtown? This means that my simple turn right onto Clark and then right onto Adams plan failed miserably. This resulted in my wandering around a three block radius like a mouse in a maze. I finally asked a security guard who told me the exact wrong thing and then I asked a second security guard who told me the exact right thing.

Success was had.

I cannot really talk about what exactly went on in the interview but I can say I think it went well.

I have blisters.

I am packed and ready for Baltimore. I am excited. Although sleeping over spring break sounds rather appealing right now. The headache might have something to do with that as well as a rather stressful day. I did get a nap in. So that is amazing. I think I am overdue for one of my 13 hour sleep days. I will not get that tomorrow.

I talked about IIH in my interview. I talked about how I will not let it stop me. I talked about how lucky I am to be responding to treatment and to have been diagnosed so quickly. I am lucky. I am very very lucky.

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.

Luck

I found this blog.

I like it but it makes me sad.

It is about a young couple. The husband was diagnosed with an inoperable brain tumor a few months after they were married. This blog is amazing and I admire their strength.

I think I feel connected to them because it is there but for the grace for me. I think about how that could have been me. I flash back to the day I was diagnosed and the ophthalmologist telling me it was either a brain tumor or MS.

And sure, sometimes I worry about my future and I worry about getting a shunt and I worry about so many things, but I should be grateful that I HAVE a future to worry about. I know this will not kill me while this couple doesn't have that comfort. I could not admire their strength more.

It was recently their 3rd anniversary and all Tashi (the wife) wants to get her husband is an autograph from Nathan Fillion. She wants to make sure this anniversary is special because she is worried that it is his last. I am trying to be helpful but I am not nearly influential enough. Anyone know how to get in touch with Nathan Fillion?

There are stories like this all across America. There really needs to be a make a wish for adults.

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.