Stuck Right Here

Six weeks later… here I am. I miss this space, and I think about it all the time. But currently I don’t feel like I have any thoughts worth sharing. Things are pretty negative around here. The best news I have for you is that I put my shoes on this morning without crying. Literal baby steps.

Last we talked I told you about the two part surgery that I was looking forward to. It was scheduled for mid October, and then cancelled. The insurance denied it. Multiple appeals later, still denied. I’m pretty devastated but holding on to the hope that my team will find a way around this roadblock. We have some options to look into, and other doctors offering to help. I’m frustrated, but my friends and family are pretty good at keeping hope alive for me. I probably won’t share any more about this surgery until the device is permanently in my body, just to keep you all out of the mess. In the meantime, I’m medicated and hiding from the world in my closet. It’s safe in there.

Like I told you before, I can’t make any promises of scheduling or content. But I want to be here. I have some ideas in mind- things I want to say/do/show you. In the next few days, I’ll be sharing a comprehensive review of the She Reads Truth Bible, and probably some cute pictures of my dog because we all know she’s the reason you’re here!It’ll happen as my life allows, and as I find the words and courage to keep this space alive. Until them, you know where to find me.

Tell me something good in the comments down below. Give me a reason to celebrate today.

With all the love,

A

What I wanted to tell you

I wanted to tell you everything. I wanted to tell you what I did today, the conversations I had, and the places I went. I wanted to tell you how I saw Jesus around every corner. You wanted to know. I wanted to tell you.

I couldn’t.

I wanted to tell you that I was sorry. I wanted to tell you that it wasn’t your fault, but it also wasn’t mine. I wanted to tell you the truth.

I lost my words before I got the chance. The English language literally slipped out of my grasp before I could even take another breath. I was paralyzed. You were frustrated.

I wanted to tell you why:

I have anxiety. Real, physical, diagnosed anxiety. The kind that requires the maximum dose of daily meds, and an extra bottle of pills for panic attacks – panic attacks that make me feel like I’m dying. I feel like I can’t breathe. The world slows down, the walls close in, and I can’t hear anything over the sound of my own pounding heart. I panic more often than I wash my hair. This is my reality.

You told me to relax- to breathe more.

“Just calm down,” you told me. “Use your words.”

I wanted to tell you that I can’t. Anxiety is a part of me. It’s not a phase. It’s not a “moment.” It’s a lifetime. I wanted to tell you that it is more frustrating and confusing for me than it ever will be for you.

I wanted to tell you what it’s like to be trapped in my own mind. I wanted you to know what it’s like to feel like there are too many people in the room, when in reality you’re home alone. At the same time, I wanted you to know the feeling of being completely unseen and unheard in a room full of your best friends. I wanted you to know what it’s like to go from feeling safe to feeling threatened in less than a minute, all because of one thought that triggers another that triggers another that triggers another. I waned to tell you what it’s like to lose your words, leaving you defenseless and helpless.

I wanted you to feel it. I wanted you to feel anxiety and panic.

But then I realized, maybe you do.

Maybe you’re hiding it like I did. Maybe you feel like anxiety took your voice too. Maybe you were also told that your anxiety isn’t real or important. Maybe you think that anxiety makes you weak or less than.

I want to tell you that I felt the same way for way too long. I want to tell you that I’m listening and I’m here and it’s okay.

I wanted to tell you that I love you, but anxiety told me not to.

I want to tell you that I will love you forever anyway, because at the end of the day, anxiety doesn’t get to tell me how to live.

With all the love,

A

 

 

Six Years Later

(I’ve sat down to write this too many times to count. I’m not one for writer’s block, but here it is)

Today’s the day we celebrate my life. Every year my friends and I get a cookie cake and balloons and we eat all the food and and blow out all the candles.

img_3487It’s not my birthday

On January 24, 2011 I went home from the hospital after several weeks of the most intense treatments I have ever experienced. Going in, I couldn’t use my right leg or my left hand. I couldn’t sleep, eat, or go to school. I couldn’t live. Going home, I was finally free and fully functional.

I was in remission. 

You’ve heard about my experience with CRPS for the last eight years. You’ve heard about the diagnosis, but what I rarely talk about is the remission – the brief “normal” patch stuck right in the middle of my journey.

January 24 is a day that I wasn’t promised. Most doctors know not to promise a patient anything, especially something as drastic as remission or a cure. I never expected my second chance. I thought that this illness was my forever fate. I thought I’d never walk again. I’d never go back to school. I’d never get the chance to do anything or be anyone. I never said it out loud, but I went into that hospital expecting nothing. I felt like I had nothing left in me, and definitely no hope to offer myself. I was done hoping, done dreaming, done praying. I was done with everything just short of breathing.

All I knew was pain. I didn’t remember the “before” CRPS Ally. I didn’t remember normalcy. I didn’t know what we were fighting for, so when we finally achieved remission I was shocked. Everyone involved will tell you that it was an absolute miracle.

I remember January 24th as the first day I got to experience life. I may not have known it at the time, but that was the day that I was no longer a victim, but a survivor. I left the hospital and learned what it meant to live. Every moment for the next several months was a new experience. From the big things like going back to dance, running and driving without pain, to the little things like wearing a shoe, opening and closing my hand, and sleeping unmedicated.

img_0054
A note from my main doctor

I relapsed three years later (let’s not talk about that today).

January 24th is my reminder that this is not forever. Hope is real, and so is remission. Pain in all forms is temporary, and I believe that someday we will all break free from it. We will all have a new life – a second (or third…) chance. I’m remembering that today and every day as I continue to fight for the life that I know exists.

 Today we eat cookie cake and celebrate life in all its forms. Today we’re grateful for the miracle I was so graciously given 6 years ago. Today is not my birthday, but today my perspective on life turns 6 years old. That’s more than enough reason to celebrate.

Quoted: Home

Ram Dass once said “We’re all just walking each other Home.”

Whoa. This is powerful & I’m not entirely sure why?

Lately, the concept of “home” has been so prominent in my heart. Where I am now – this place with this body – it’s temporary. It’s not my forever home. But what I’ve failed to recognize is that I’m not alone in that. We are ALL just fighting to survive. We ALL just want to make it through the day… and ultimately make it home.

My battle may be more physical and more public, but it is no more or no less than anyone else’s journey home.

We have to be more intentional.

More.

More aware.

More.

We have to be MORE.

I want to run towards the throne hand in hand with the ones that I love. It’s not a race. This life is NOT a race. With the gift of salvation and the promise of eternity, we are all heading to the same great place, where we get to remain forever – whole, complete and perfect.

Thank you Jesus!!

In the meantime, we get to endure this worldly journey together. The beauty painted across this world, even in the darkest corners, is ours to drink in – straight from the hands of the Creator.

It’s a blessing and an honor to be on this journey Home with some of the Lord’s best.

No one walks alone. Jesus, we’re coming Home.img_2543

(Full disclosure: This post was originally written entirely on April 17, 2016 – a season of life that was dripping in physical illness – as a private journal entry – never intending to be read publicly. It’s being shared here today simply because it feels right.)

Meet us at the river

 

My best friend and I are runners- Not the healthy, fit, muscular kind of runners (although I do love running, and finished two 5K’s within 24 hours a few months ago), but the lets-get-away-from-here kind of runners.

Lately, more often than we’d care to admit, we’ve been inches away from falling into the traps of the enemy. No matter how intentional and careful we are with our hearts and spirits, we are certainly not immune to difficult days.

So what do we do when the world tries to bring us down? When we feel stuck? When we’re lost?

We run. We grab our keys. We pack our backpacks. We tighten (or in her case, loosen) our chacos. We run.

Where do we go? The answer to that question is almost always “nature.”

Our favorite spot on the river, where the sound of the rushing rapids drowns out the noise of the world.

A secluded trail that leads us to a quiet creek surrounded in Texas’s most beautiful wildflowers.

A pond hidden along a winding path, offering the clearest view of the brightest stars in the darkness of the night.

Here’s the thing: We aren’t running from our problems. We aren’t running from the people or things that have left us hurting. We aren’t running from the pain.

Instead, we carry all of those burdens with us, and run straight towards The One who can free our hearts from those chains and clear our minds of the lies the world feeds us.

Recently, on a day that shattered our spirits, a day that we heard many hateful lies and hurtful comments, we dried our tears and peeled each other off of my bedroom floor.

“We need to run”

We threw our bibles in my backpack, put on our swimsuits, and got in my car.

“Meet us at the river, Jesus. Meet us where we are.”

We ran, arms and hearts wide open.

We talked. We prayed. We read scripture. We listened.

Right there, amongst the moss covered rocks and flowing water, we exhaled the negativity that suffocated us, and we inhaled the peace and truth that The Lord so generously fills our lungs with.

After all, there’s no better way to feel close to the creator than to be in His creation.

We ran to Him, and He was there.

He met us at the river. He always does.

img_2293
our favorite spot on the San Marcos River

Friends, find your safe space- your happy place. Run. Ask Jesus to meet you there. I promise you that He’ll never turn down the invitation. He’ll meet you at your river. He’ll meet you where you are.

With all the love,

A

 

 

Dear New York City

I miss you.IMG_2993

I miss you, and the way you make me feel so perfectly small and humble.

I’m missing the constant noise and movement that would send my mind into overdrive back home, but instead opens my senses to the beauty of the world around me on every street corner in the city.

I miss the smells of street food, coffee and cigarette smoke that burns its way into my naïve little soul.

I miss being unknown by the masses, and I miss the wonder of your people.

I miss the languages, the accents, and the dialects that evolve from block to block.

I miss your sunsets from rooftops above and your darkness in the tunnels below.

I miss the contrast, the instability within your routine.

I miss your people. My people. Our people.

I miss you.IMG_2966

With all the love,

            A

Teaspoon of Sprinkles: Part 2

Last week, I left you with a cliffhanger while explaining why I chose the name Teaspoon of Sprinkles for my blog. Today, I’d like to let you in on the history of my love of spoons.

If you know me personally, chances are that you know about my life with chronic pain. If you’re new to my life, first of all- Hi! Welcome! I’m Ally and 8 years ago I developed a disease called Complex Regional Pain Syndrome. Basically, my nervous system is broken and my brain can’t turn the pain signal off. Although my journey through chronic illness has had many different seasons and an abundance of highs and lows, for the most part my daily life has consisted of pain and various challenges. Currently, I experience full body burning pain 24/7 and often deal with a hypersensitivity to touch and sound- meaning that it causes pain to touch my skin, and I feel loud noises. It isn’t unusual for my arms or legs to turn purple, and I actively manage debilitating muscle spasms and tremors.

If you were to run into me casually on campus, you’d have no idea of the war raging inside of my body. CRPS is what we call an “invisible illness.” It’s very real and very significant, but it isn’t outwardly visible. You would only know that I have it if I were to tell you, or if you were to witness one of my flares.

This is where the spoon comes in.

A woman named Christine Miserandino created the Spoon Theory in an attempt to explain what it’s like to live with a sickness or disability. Although Christine battles Lupus, the parallels between all chronic illnesses are endless. Friends, please take the time to read Christine’s words. Read the Spoon Theory and allow yourself to get a glimpse into my daily life, and even more so into my heart and the hearts of millions of people worldwide who are walking the road of chronic illness.

Photo on 7-5-16 at 12.47 PM
A very special and artistic friend painted me a very special and artistic spoon and it made me feel very special and not artistic

Here’s the take away:

Sick or not sick, I feel strongly that it’s important to be intentional with our time, with our energy, and with our hearts. I may have fewer spoons in my pocket than you at the start of each day, but we still have the same opportunities to choose where we spend them and whom we spend them with. Personally, I love to spend my spoons on intentional time with my favorite humans (especially this one). As Christine mentions, we are careful not to waste or drop our spoons and we learn to live with a spoon in our back pocket.

I bet you’ll never look at a spoon the same way, will you? I hope that this has brought you some insight into the life of myself and other people you may know battling various illnesses. Please share the spoon theory with anyone and everyone that you feel may be encouraged or blessed by its message. Whoever you are, and whatever your connection to me is, I want to thank you for being here with me right now. Thank you for knowing me. You are all worthy of all of my spoons.

With all the love,

A

(all credit for the spoon theory goes to Christine and her website butyoudontlooksick.com, of which I am not affiliated)

A Writer

I’m a writer.

Here’s the thing about me being a writer, though: I’ve always hated English and writing intensive classes. Both of my siblings are journalists, one of which being a writer by trade (catch her spreading some genuine delight over on her corner of the internet). They were always the English and history kids in our family, while I excelled in math and science.

When I reached the end of high school and found myself unable to contain the words pouring out of me and onto paper, I was shocked. I didn’t tell anyone that I was writing. No one even knew that I had a journal, or that I had dozens of word documents saved on my computer.

As I’ve grown older and learned more about myself, I discovered that writing was so much easier than verbal communication. I’m pretty good at holding my own in a conversation, good enough to trick the world (and myself) into thinking I was an extrovert for 18 years, but when it comes down to the words that need to be said- the hard-truths, the important reminders, the unavoidable emotions (good and bad)- those are most easily communicated in writing.

It was no surprise to my people when I agreed to start my own blog- in fact, they begged encouraged me to do it. While talking with a friend a few months ago (while drugged up in the ER, nonetheless) she stopped me mid sentence to ask if I had a blog. I told her to stay tuned for that, and now here we are.

So, what can you expect from me here? Well, to be honest, I’d rather you not expect anything at all, that way you’ll never be disappointed (an important life lesson that I just recently learned)! Instead, I’ll tell you that my intentions are to use this as a space to offer insight into all aspects of my life- obviously that means the life of being chronically sick and the abundant lessons and experiences that come with any diagnosis, but also the life of a college girl following Jesus into uncharted territory and finding identity in Him along the way.

Fair warning: I’m a broken human.

Spoiler alert: so are you.

But that’s what’s beautiful about this life here on Earth: We all get to be broken together. After all, it’s those broken cracks that let the light shine through.

One of my favorite quotes comes from Ram Dass. He says “We’re all just walking each other home.” This life here on Earth is just an avenue to our final destination in Eternity, and we’re lucky enough to get to share in the twists and turns of that journey together.

So, join me here on that walk. Lets do life together. If you’re here, reading this, I want you to know I’m happy to have you. I hope you stick around. I want you to know that you’re never alone. I’m always here. And I want you to know that you’re loved beyond comprehension. Just trust me on that one.

With all the love,

A