National Rare Disease Day 2014 -- Feb. 28th

Hello.

I'm Lindsay Sprick.

I have many things that make me who I am. I have an identity. We all do. We are fascinating.

I have an extra thing. Most people do. But everyone has really interesting names for their weird things. We try so hard to define us. Our faults. Our defaults. Our definitions. Our thesauruses.

I have Pityriasis Rubra Pilarus. Type III, IV, or V. We don't really know. We never really will. Those of us with this disease will likely never know truly if there is a type, if we truly categorize with it, or if we really know what having this disease means. It's this checklist of frustration that we can't seem to conquer.


It's so alienating, it's disgusting. 


One in 600,000 people can get PRP. One in 1.6 million to one in eight million can get type III-V of PRP. That's what I have.



We're alone.



It's scary. 



But....



I recently had a glimmer of hope. 

I was emailed a number, a name, and a desire--someone in South Carolina wanted to meet another PRP-er. There really aren't many of us. We're a weird science.

So, for me, this was a terrifying thing.

Would I relate to this woman?

She has children.... I don't.

She has a husband.... I don't.

She has a similar but different type than I do.

Will she really know what I'm going through? I hope so.

Will... will we understand each other?

The answer was a very simple one: Listen. Learn. Tell each other your stories.




We both have amazing stories. 



.... and this entire time we lived an hour and a half from each other. 



She loves craft beer, just like me. So does her husband.

She is a redhead. So am I. 

She's just as strong as I am, if not stronger. No.... she's stronger.

She wanted to meet me, just as much as I wanted to meet her.

She is my long lost sister. Her desire to know about everything, to try everything, and to share her experiences with anyone who will fight the way she does was easily the most inspiring moment of my life.

January 19th completely changed my life.

It not only gave me hope.... it gave me some purpose.

Not only did Ginny relate to me, we ended up feeling like we knew each other our whole lives.

We both knew that grey feeling.... that lost feeling.

When you're always in pain... it's not easy.

People with PRP struggle with a few common factors--pain, fatigue, and visibility.

Pain constantly. You just get used to it (well, we try). It's all in your skin... your nerves. Honestly, you develop a strong resistance to it. A numbness. It doesn't make it easier... and mind over matter gets you pretty far, but not the entire way. We all find our way to deal with that frustration.

Fatigue. Oh.... daily. Daily. I speak so often of how much I love my bed. I really, really, really, love my bed. Cold weather ruins me. It literally takes every ounce of energy I have and leaves it at fall's feet. I grasp back at it, but I know that it won't be back until spring. There is nothing more calming to me than a hot cup of tea in my hands, a bundle of covers, and a few movies to watch.

Visibility. This is hard for me to talk about. Red... everything. Red. Burning. Embarrassment. Pain. Bleeding cracks, washing them out in the shower the next day.... Trying to moisturize constantly because if you don't, someone will notice. Everyone notices. The ridicule in middle school and high school is the worst of it.... young people are very creative. I grew up fast to combat it... Understanding was my armor. It helped but... it never made it that easy.



Winter to Spring is so frustrating. I'm so close to being perfectly healthy again.

That bloody gopher is my worst enemy. Tell him to hibernate elsewhere....


However, don't get me wrong. I love seeing everyone (groundhogs included), cheersing glasses, getting excited and partying it up! I really do! Jazzes me up and gets me feisty.



I also hit walls.

Sometimes I just don't have the energy. I get so tired.

Cold weather physically hurts me. It hurts.

But the sun?

Oh my dear goodness gracious, give me a beach for two weeks and I will come back perfectly fine. I heal on the beach. I heal in sand, salt, and heat. It's like getting drunk and waking up hungover... except you wake up better than when you went to sleep. It's this really cool feeling... you feel like you're sun drunk. It's so.... good.

It makes me stretch like a cat and grab my headphones and a good book just so I have an excuse to lay on the beach.

SPF 50 for life, yo.

(every hour and a half, cause I burn)

It feels like life again.


It feels like energy.


It feels like healthy.


Whatever my point was when I started this... I just want you all to know this:

There are people who everyday battle incredibly strange and off the wall rare diseases.

They struggle with them every single day.

Far worse than I do.

Far worse.




I will never have a cure. It's not going to happen. Nor will they.



But one day, someone might. And that's the purpose of National Rare Disease Day.



Just... Listen. Listen to your neighbor. Your friend who may have a disease they can't hide. Your friend who suffers quietly and looks so normal. Your friend who knows that they don't have a shot at a cure.



Money rules the world.

We don't have enough money to find our cures. 

All we ask for is one more person to understand the fight. 

Maybe one day we can find help for those who are so debilitated that they need a real friend. Who won't judge. Who won't shy away.

We're alone. 

We also want to live. 

We have so much life to live. 


All we want is your help getting there.


It's Rare Disease Day.

Reach out.

Believe.

We have so many stories we're more than willing to share.