What Happened Next

Wow, hi Internet. I missed you.I know I told you I wouldn’t run off again, but nobody should be surprised. I’m here now. I found some time to sit still and think and write, and that’s exactly what I’ll do. I owe you an update, I know.

I’ve been spending every day with my favorite people and friends, and one thing seems to be consistent: they all just want me to be real. They ask about my writing. They ask where it is. They know me well enough to know that once I’ve lost my ability to write my thoughts, I might as well have lost it all. I’ve been telling them that I just can’t right now – surely nobody wants to hear how challenging things are. I never wanted this to become a negative space. My people have been telling me that it doesn’t matter, that you want to hear it all. As one friend put it: I have to tell you the truth about my reality, if only just so you know how to better love me and pray for me. Wow I have the greatest friends!!!!

So, where do we begin?

Lets go back to what I last told you a few months ago in this post: I spent several months last fall waiting for a surgery that never happened. My doctors decided that a spinal cord stimulation is pretty much my only option left for treatment of my Complex Regional Pain Syndrome. For the first time in my life, I agreed and I was READY for that surgery. Well, as you know, it was cancelled indefinitely when my insurance denied to cover it. In fact, from that point on, my insurance cut me off completely. I spent the last few months of 2017 paying for everything – appointments, medications, even my flu shot. I was incredibly defeated and angry. Insurance companies have never been my friend.

What happened next?

January finally rolled around. Thanks to my dad’s job, I have a different insurance company this year. I met with my doctors as soon as I could, and we immediately placed an order for the spinal cord stimulator. We scheduled it for early February, and we waited. I waited three weeks. I am not always the most patient girl, but patience is probably the one thing I’ve learned the most about this year. The week before the surgery, the insurance still hadn’t made a decision. I was told I had until the Friday before the surgery to get approval.

Friday happened.  I called my case worker one more time, knowing full well that she had spent the entire day on my case. In the most casual way, she told me she hadn’t had time to call me yet… but it was approved!

Wow okay slow down. I found out FOUR DAYS before my surgery that it was ACTUALLY happening. That was terrifying. You see, I had given up by then. I had decided that it would be batter to prepare myself for another denial. I thought that was the safer route. So when I got approval, that was a whole different experience that I wasn’t ready for. I’ll share more about those emotions some day soon. I want you to hear about it, just not right now.

So yes, the surgery happened. February 7th. It was the most insane day.

My sweet sweet sweet best friend picked me up bright and early and we made the hour long trip to north Austin. We prayed in the car and headed upstairs, and I was in pre-op five minutes later. While I was being prepped for surgery, I met at least a dozen different people who would be in my OR, each one with a very specific job to ensure that everything went perfectly. Everyone was ready to go, and I went under with no problems. But nobody was prepared for what would happen next.

First, let me tell you that the surgery itself went perfectly. Everything went in exactly as it should have, and ultimately (spoiler alert) it was a success.

I wasn’t even out of the OR when the seizures started. There were 3 of them. I remember being slightly aware between numbers 2 and 3. I remember hearing the staff call EMS while someone else put what I assume was a breathing tube in my throat. They didn’t have time to secure my airway before the next seizure started. The last thing I remember is being rolled, and my only thought was “please don’t ruin this stimulator.”

I’ll make this really long story a bit shorter by telling you that it had a happy ending. I was taken to a hospital, and ultimately my seizure disorder was finally diagnosed as hypomagnesemia. I don’t know why, but this ER doctor ran some tests that must have been missed before, and I was discharged a few hours later with a new body full of magnesium for the first time, and a bunch of supplements to take. I still have a bit of a journey left to go on with the seizures and tremors, but I at least see the light at the end of the tunnel there.

Back to the stimulator.

After my little trip to the hospital, my team of St. Jude representatives turned on my device. I’ll make a post on the science behind spinal cord stimulators later if you’re interested, but for now I’ll keep it simple. The whole point of the device is that it is supposed to cover up the pain in my lower body. The insurance looks for a 50% improvement in pain… and I got 80%! The device they put in on February 7 was just a temporary trial to see if this had potential. With so much success, I’ll be getting a permanent one implanted in about 2 weeks.

There’s so much more that I want to tell you. But for now I’ll leave it here. The excitement is dying down for a minute in between surgeries, so I finally have some time to reflect and prepare for round two. I’ve had to give up so much for this journey, including school and work, but I know that I’m going to get so much more in return.

 Alive Blessed Grateful

I might be a little nervous, but I can’t wait to see what happens next.

I’m so so SO happy that I get to share this whole thing with you. I hope you stick around to see what happens next. I’ll try not to leave you in the dark this time.

With all the love,

A

 

 

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

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.

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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.

Friendship Friday: with a twist

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.

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I want to share a J story real quick: The last time I saw J, I surprised her at the Clinic during my 6 week follow up. She had no idea I was in town. Together, we walked down the hospital hallway hand-in-hand…. Something we never thought would happen. Forever my favorite walk with my girl. 

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.

With all the love,

A & J

Eight Years

Today marks eight years since the day that turned my life upside-down. Eight years ago, I tore my achilles tendon- leading to the onset of my now life-long battle with Complex Regional Pain Syndrome. 

In honor of the past 8 years, I’ve decided to share with you the ~short~ version of my chronic illness testimony. I hope that through it you discover a sense of hope and motivation to embrace hardship in your own life, no matter what you’re currently facing.

You’re never alone.

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the ankle that ruined me… the cross that saved me

I was 12 years old when the pain started. I had no grasp of the concept of ‘forever.’ The words ‘chronic’ and ‘incurable’ were foreign to me. In the span of 18 months, I went from the highs of making the school volleyball team, to the lows of being diagnosed with Complex Regional Pain Syndrome.

Before CRPS, I was happy, busy, and active… I was healthy. I was ‘normal.’ I had a memory bank full of good times, laughter, successes and love. My dreams resembled those of every other overachieving little girl. My future was bright, my faith was strong, and my heart was full.

Pain changed everything. Being so young and having your body begin to fail you is nothing short of devastating and incredibly confusing. I very quickly became a person that I swore I would never be. My diagnosis dictated my every decision, my every move, and my every thought. My spirit was overcome with anger and hatred for the life that I was living. My thoughts were clouded by dozens of the most hard hitting questions: ‘Why me? What did I do wrong? When will it end? Is the fight even worth it? Where are you, God? Why won’t you heal me? God, why have you done this to me?’ I fell victim to the traps of the enemy and the lies of chronic illness. I began inflicting emotional pain onto people that I loved, because I thought that if I had to walk through hell, they should too.

It wasn’t until I was 16 or 17 years old and in remission that I realized I had it wrong all along. The most defining moment of my battle came when I made the decision to stop being a victim of chronic illness, and start being a survivor instead. As I faced the reality of relapse right before high school graduation, I clung so desperately to the fraying ends of the rope I had woven of hope and bravery. I moved forward through the darkest months of my life, holding on to the thought that maybe, just maybe, God had something great for me waiting up ahead. Sure enough… He did. I discovered an entire community of people facing similar (yet vastly unique) battles against various chronic ailments. I found support. I found friendship. I found love. I rediscovered Jesus. I was reminded of the irreplaceable purpose and tremendous potential that I possess. Through the encouragement of the Word and incredible friends, I have been able to replace the lies of the world with the truth and promises that God provides. He is sovereign and almighty. No matter what these earthly doctors tell me, He is the ultimate physician. He knows my every pain and every hardship. He’s supplies me with the strength I need to rise up above my illness each day and share His love with the world. He’s promised me the ultimate gift: an eternal life free of these chains that bind me, free of pain, free of suffering, and free of darkness.

I am sick. I am broken (spoiler alert: we all are). I fall short. I mess up.

But in the very same breath of life, I am loved. I am worthy. I am strong. I am brave.

I’m a survivor.img_2729

With all the love,

A