rare-ness

This is rare. I am blogging on February 29th. This won't happen for at least another 4 years. I just couldn't pass up such a great opportunity. ;)

Today is Rare Disease Day. If you didn't know that, don't feel bad because I didn't know it either before today. I am glad they are trying to raise awareness, because these diseases don't have cures and don't get much research or funding.

I have Solar Urticaria (read: I am allergic to the sun). I started having symptoms when I was 16, but wasn't actually diagnosed until I was 17. The dermatologist said there was really nothing he could do for me. He said it is so rare that there are not really any statistics, so he said it may go away after a few years or I might have to deal with it the rest of my life. So I am on 8 years and counting. Eight years...wow, I had never stopped to count that before.

This is a rare disease because only 4% of U.S. patients with photosensitive disorders have solar urticaria.

I have been pondering all day, and I asked my mom and sister how I should celebrate a day that feels, in a small way, like it is dedicated to me. My mom said I could go out in the sunshine so I could "celebrate" my rare-ness in its fullness...JK. I thought that would be a great teaching moment for my Cubbies at church tonight... ("Look kids, this is what happens when someone has an allergic reaction.") Here is my sister's suggestion: "Spend some of your rare free time blogging about your rare experiences."

So here I am. Blogging at 10:40pm. Because that is the only free time I have. I am going to go crash now so I will leave you with the current "cure" for my disease. (actually, I just think the vocabulary in this paragraph is humorous...especially the judicious-application-of-sunscreen part.) Happy Rare Day, friends.

Sun exposure must be avoided or minimized because it is the primary causative agent of solar urticaria. Educate patients about practical measures such as wearing protective clothing, judiciously applying sunscreens with adequate protection against the causative wavelengths, using UV protective shields over glass windows, and altering lifestyle to minimize time spent outside during the day (ie, changing job hours, shifting to indoor recreational activities).

wilderness lessons

A certain song has been playing its way through my head the last couple of weeks. I call it my "wilderness song" and it describes where I am right now. The wilderness can be a wild and bewildering place, but I am believing that good things can be born from my experiences here. I have heard many other people talk about the wildernesses in their journeys. They can now look back and see how God was working in the midst of that difficult situation. I will be able to do that someday. So while I still feel lost in it right now, I will sing.

Beautiful Mercy
by Laura Hackett

There is no pit too deep
That Jesus cannot reach.
There is no sorrow so strong
That would overtake His beloved one.

And He’s brought me to the wilderness
Where I would learn to sing.
And He lets me know my barrenness
So I will learn to lean.

There is no pit too deep
That Jesus cannot reach.
There is no sorrow so strong
That would overtake His beloved one.

And He’s brought me to the wilderness
Where I would learn to sing.
And He lets me know my barrenness
So I will learn to lean.

(So kind.) Beautiful mercy
Do what you have to do.
Jealous lover
Do what you have to do.
(You know the best way)

You’ve brought me to the wilderness
Where I would learn to sing.
And You let me know my barrenness
So I will learn to lean.

So I will sing
Even in this brokenness
Even in this loneliness

randomness, at its best

I'm tired because I just finished studying, baking banana bread, washing dishes, and doing laundry.

I wish I was done with school.

I'm grateful that my family came to see me over the weekend. I haven't seen them since New Year's.

I want to go to bed early.

I'm scared because Nexium makes me eat like a teenage boy (i.e. constantly).

I believe I am doing pretty good about staying on my heartburn-free diet because pumpkin bread now tastes spicy.

I'm excited because I am going on a mission trip with my church. I haven't had the opportunity to do that since I started working full time when I was 20.

I discovered a gem of a website this weekend. Click here to see for yourself, but you may become addicted. I am.

I'm ready for a new season. In many ways.

Okay, these are the last pics and I will try to find time to actually write something. Life has been full of ups and downs lately and I just haven't been able to put anything into words on a page.

Deep in Love

(lyrics are written by Michael W. Smith, Debbie Smith, Christa Black)

Sitting at Your feet is where I want to be
I'm home when I am here with You
Ruined by Your grace, enamored by Your gaze
I can't resist the tenderness in You

I'm deep in love with You, Abba Father
I'm deep in love with You, Lord
My heart, it beats for You, precious Jesus
I'm deep in love with You, Lord

Humbled and amazed that You would call my name
I never have to search again
There's a deep desire that's burning like a fire
To know You as my closest friend

Lord, my Redeemer, Your blood runs through my veins
My love for You is deeper than it was yesterday
I enter through the curtain, parted by Your grace
Oh, You're the lover of my soul

more pics

24th bday pics