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.

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!

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.