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.
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 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.
(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.
It’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.
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.
Halloween may be over, but I wanted to share this year’s award winning costume with you!
This ice cream sundae costume looks a lot more complicated than it really is. The materials are simple and cheap, and it only took me about 6 Gilmore Girls episodes to make (time is told in the number of episodes you watch, right? Right.)
The tutu was made with about 80 yards of white tulle. That sounds like a lot- I know. Pro-tip: buy the tulle in the floral department, not the fabric department. It’s the same price for almost twice the yardage.
I paired the tutu with a tank top that I already had, and glued pipe cleaners cut to be about 2 inches onto them. I started with more “sprinkles” on top, and fewer as I went down the shirt and into the skirt. This was the hardest part for me… I’m a perfectionist and wanted there to be order and methods to this process, but truly there is no order to sprinkles. I had to let go of a lot of perfectionism to get this done!
For the cherry on top, I cut a little bit of a styrofoam sphere so that there was a flat edge for it to stand on. I painted the whole thing red and stuck a red pipe cleaner in the top for a stem! Then I glued the flat edge to a headband. I wasn’t sure if this would work out- I thought the cherry would fall, or it would be unsteady on my head. I was wrong! It stayed right where I put it, and honestly I forgot it was even there.
Finally- the spoon. If you’ve been here since the beginning, you know that the spoon was a necessary accessory. I cut the shape out of cardboard and wrapped it in foil. It’s as easy as that! I’m thinking about hanging it on the wall… I sorta love it a lot.
And that’s all! Totally easy and totally cute. I may or may not put my costume on at least once a day just to look at myself in the mirror. No judgement.
Been a minute, again – I’m sorry! To be truthful, the last few weeks my schedule has been packed with doctors appointments, midterms, lots of rest, and failed attempts at going to school every day.
Despite the obstacles in my life, theres been enough good days to make room for a little bit of normalcy. There’s still plenty of coffee dates, Gilmore Girls marathons, and my favorite fall tradition with the best friend. (Is it still a tradition if it’s only happened two years in a row? I can almost guarantee it’ll happen every year in the future!)
We love us some pumpkins, y’all. A local church in town has the cutest pumpkin patch every year, and we’ve found ourselves going multiple times each year.
If you know us, you know we take dozens of pictures everywhere we go, and then delete 90% of them immediately. Although we failed to take any pictures together this time around, here are some of me that survived this year:
Is it obvious how much I love pumpkins? No? Didn’t think so. Well- I really love pumpkins.
Surprisingly, this time around I only bought 1 pumpkin, and it was one of the most adorable and perfect tiny pumpkins that fits in the palm of my hand. I do believe we’ll be back this weekend buying pumpkins for a fun pumpkin painting (and possibly smashing?) party that we’re having on Monday! Stay tuned for that.
Happy Friday! Sorry for missing you here on Wednesday – someday you’ll here about the roller coaster I’ve been riding this week. But in the mean time, I want you to meet one of my favorite people: Jenna!
Normally on Friendship Friday, my friends answer 4 questions to give you an inside look at our friendship and all of it’s quirks. This week, I’d rather introduce you to little J myself. Our friendship is so much different than most, and our relationship is one that definitely can’t be summed up in 4 questions.
As you know, I have a disease called Complex Regional Pain Syndrome…. So does Jenna. Back in the winter of 2015, I was sent to the Cleveland Clinic Children’s Hospital for Rehabilitation to be admitted to the Pediatric Pain Management Program… So was Jenna. That’s right: we met in the hospital because we were both fighting a seemingly impossible battle against an ugly disease.
We spent only 3 weeks together in the hospital before I was discharged and sent back to Texas. She stayed in Cleveland another 6 weeks before heading home to Canada. We’ve only gotten closer since that day, through texting and social media. Jenna and I share life’s ups and downs together in a way that no one else understands.We’ve literally seen each other go from wheelchairs to running, and every milestone in between. Not a lot of people can say that – and there’s no one in this world I’d rather do the rehab life with than my J.
Here’s the biggest secret to this friendship: Jenna is 8 years younger than me. When we met, she was the age that I was when I got sick. The reason our little hearts are so bonded is because she is the image of Little Ally. Our lives are pretty parallel – from our pre-sick days as dancers, to our post-rehab days as advocates and passionate dreamers. Jenna is simply 8 years behind me on this life journey, and I’m so honored the Lord chose me to hold her hand through it all.
Jenna keeps me laughing. She keeps me thinking. She keeps me hoping. She’s a bundle of joy, wrapped with a ribbon of grace. Bonded by pain, but secure in Jesus. That’s our friendship in a nutshell.
I want the world to know that friends like J exist. Age is just a number, and this friendship is forever.
A year and a half after meeting: J & I are both doing so well. The Little One amazes me every day with the things she accomplishes (homegirl plays badminton and jumps into swimming pools!!!!). I’m a full time college student (I was a dropout during my treatment). We love life, but more importantly- we love life together.
To be quite honest with you – I’m slacking today. I have so much to do, that I sort of haven’t done any of it. So, to keep things simple, I’m going to answer 10 About Me questions in hopes that my new (and old!) friends can learn a bit more about me!
Lets get started…
Where are you from?
I’m from Cleveland, Ohio! People knock Cleveland all the time, but I love it. I left Cleveland when I was 2, but I lived there for a few months last year (in the dead of winter…) and I fell in love all over again. Cleveland is home!
Do you have siblings?
You’ve met my sister, Annie. She’s 26 and works as a journalist in New York City because she’s a dream chaser and goal achiever. She’s my lifelong best friend and my favorite person. We have a brother, Steve, who is 23. Steve is also a journalist, working in Phoenix Arizona.He’s the one that taught me to be funny and how to not get caught. I also have about a million incredible humans who I’d love to claim as my siblings!
What are your 3 biggest fears?
Speedbumps (I’ll explain eventually…), failure and movie theaters.
Do you have any pets?
Crying already. I have a dog, but she lives in Dallas with my parents while I’m in college 4 hours away. She’s perfect and 100% me in dog form. Her name is Lexi and she’s a doberman beagle mix (I know, I have questions too). We got Lexi just before I became sick, and she was essentially raised to be an emotional support dog. She knows which of my legs she can and cannot touch, and she loves to snuggle.
What are your 3 favorite songs?
Right now I’m REALLY into JJ Heller. If you haven’t heard of her, she’s an acoustic christian artist. I love her songs Love Me and and This Year. In addition, Fix You by Coldplay will forever be my favorite song.
What’s your favorite movie?
Listen. My friends make fun of me for this- I simply can’t watch movies. Refer to question number 1 for my fear of theaters, but in addition… I truly can’t sit still or pay attention long enough to last through a movie. I either fall asleep, or walk away. That being said, The Little Prince on Netflix is incredible and I have watched it dozens of times.
What are 3 things that make you happy?
This is an easy one- My friends NEVER fail to lift me up, along with quiet time and a day at the river. (even better… a quiet day at the river with my friends!)
What’s your current major- along with career goals?
Okay this one’s mocking me, because I’ve changed my major three times. I’m currently a social work major and I am in LOVE with it. I can’t quite tell you what specific agency or field I’d like to use my degree in, but I have always had a passion for pediatric health care, as well as nonprofits.
What’s your favorite holiday?
Oh man. I don’t even know how to answer this one. The typical answer would be “Christmas!” but honestly Christmas isn’t a big deal in my house because my siblings no longer live at home. I’m gonna have to say Easter… I love me some Salvation.
What’s your favorite bible verse?
I’m going to steer this in a different direction, because I truly can’t choose one. I’m a massive Paul fan. Paul gets me. I’ll tell you that my favorite book in the Bible is 2 Corinthians, and I read it in its entirety at least once a day week.
And that’s it! Anything you want to know that I didn’t answer? Let me know!
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.
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.
(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.)
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.
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.