A Year of Mess and Miracles

Spoiler alert: This story has a happy ending. A way happier ending than I could have ever written. In fact, this is the complete opposite of the story I thought would one day be told. I always knew this story would be shared eventually, but truthfully, I always imagined that it would be someone else telling the story of how I died. But it isn’t. Its me sharing the story of how I lived. This is not the ending I was prepared for, and I’m still processing that deeply and painfully. But nothing compares to the gratitude I feel. I am so thankful that, for once, I was wrong. It truly is a gift to be aliveSo that being said,
here is the story of my miracle:

At the beginning of 2018, I was given the opportunity to receive a spinal cord stimulator implant to treat my severe Complex Regional Pain Syndrome. I had been fighting my insurance company for months on end, anxiously waiting for approval. On February 7, I had surgery to place a temporary SCS trial, to make sure that the treatment was effective before doing a more invasive surgery for a permanent implant. After 7 days of virtually pain free bliss, it was determined that my trial was effective enough for a permanent implant.

I was told that March 14, 2018 would be the day that my life would change forever. I thought THIS was the miracle I had been waiting for, and for a day or two, it seemed like I was right. I had zero complications during or immediately after the surgery, and I went home that day with a 100% effective stimulator. I had no feeling (aka no pain!!) from my ribs down, exactly as we had hoped.

Miracles all around, right?

But then slowly it seemed like that miracle was turning into a nightmare. I hadn’t really been able to eat since the surgery. At first we thought it was just normal recovery from major surgery and major painkillers, but day after day I vomited everything I put in my mouth. I had no nutrition in my body, and on day 9 post op, I couldn’t even stand on my own two feet. I found myself alone in the Emergency Room late that night. I assumed I would just need a few liters of fluid to rehydrate and nourish my body, and a few doses of Zofran to end the nausea once and for all. I knew I was wrong when they kept coming in to take more blood. Something wasn’t normal. I soon found out that my kidneys were slowly failing and my body was in metabolic acidosis – my blood was completely acidic, toxic to my body. I was admitted for three days on a sodium bicarbonate pump, with a fun potassium crash thrown in for good measure. My body was a wreck.

Upon being discharged, I was still unable to eat without medication to stimulate my stomach to digest. It was as if my stomach was suddenly paralyzed, and nobody could tell me why. My pain management doctor, the one who implanted my SCS, told me that it was merely a coincidence that my stomach became paralyzed the same day he implanted the device into my spine.

I believed him. Why wouldn’t I?

Despite a few extra pills each day, my life moved on. I thought I had made it through the worst of the storm, and things could only go up. They certainly couldn’t get much worse. I rebuilt from the ground up – I reenrolled in school, I started a new job, I started going out with friends again. Things were certainly hard and different, but I was still pain free thanks to my stimulator, so I was endlessly thankful.

Of course, all of that crashed and burned again in the middle of June – only 3 months after the surgery.

In the most confusing and devastating ways, it was discovered that the stimulator in me had completely malfunctioned. It needed to be removed, and a new one implanted.

Why?

Because they were implanted incorrectly the first time. Nothing was anchored, the leads were out of place, and that cant be corrected without surgery. Remember my paralyzed stomach? Yeah, it wasn’t a coincidence. The stimulation had been covering my internal organs – obviously, not good.

The next several weeks were the most heartbreaking blur of my life. Every day I was on the phone with my doctor’s staff, the insurance, or my caseworker. If I thought it was hard to get this surgery approved the first time, then nothing would prepare me for the insurance battle the second time. The insurance wanted nothing to do with this. They paid for this very expensive surgery less than 4 months prior, why would they want to pay for it again? It wasn’t their fault that the first surgery was botched. They denied the claims endlessly, and I ran out of options.

My caseworker called me for a final time the morning of August 27. She told me it was over. There was nothing she could do anymore. The insurance company’s decision was final: I was not worth the cost of saving.

I was a case number with a price tag… not a human with a name.

That night was the lowest of my entire life. I knew that I wouldn’t make it without this surgery. I had absolutely no hope left and honestly, no desire to advocate or fight for myself at all. It was easier for me to assume that the insurance was right – my life was not worth saving. At this point, I knew that no matter what I would be dropping out of school, and probably losing my life in one way or another. There just didn’t seem to be any other option.

But by the next morning, there was another option – a complete miracle.

I got a text from a friend that morning while I was picking up breakfast at Panera. This wasn’t just any random friend, but one who means a lot to me and knows me and cares for me better than anyone. She has a lot of qualities and experiences that I benefit greatly from every single day, but there’s also one thing she has that legitimately saved my life that day: a dad who is the kind of doctor that treats my disease and does the surgery I need.

Without telling me, she had shared my situation with him and asked him if he could pull off a miracle and save my life.

He said yes.

I was being handed a literal miracle as a gift, with a perfect bow on top. And yet, I was still full of fear and doubt. How could this be real? What does this even look like? If I accept this gift – that means travelling and surgery and recovery, none of which is fun for me. If I turn this down – it likely means certain death. I never thought “life and death” situations were real. I thought they were just made up plot points to add drama to books and movies.

I chose life that day.

A few days later, I was sitting in his office in Abilene, 4 hours from where I live. He showed me my leads on the fluoroscope and confirmed that this busted stimulator was the cause of all my problems, and that he would be more than happy to fix it… at no cost to me.

A nearly $600,000 surgery, completely pro bono.

(Disclaimer: because he and his staff are way better than any of my previous doctors, they were ultimately able to get insurance approval for me in time for the surgery – but with this miracle story, it was the thought that counts)

A few weeks later, on September 24, my friend brought me back to Abilene and it was time for the surgery to be done – correctly, and for a final time. Because her own dad was my doctor, she got to stay with me the entire time, including in the OR. The surgery went perfectly, and everyone says that the device taken out of me was clearly not ideal – it was massive and just not done correctly. There was a ton of scar tissue in my spine, but everything went in flawlessly and all I’m left with is two perfectly imperfect scars.

Exactly 1 year after my botched surgery, and 6 months after my final miracle surgery, I have a perfectly functioning stimulator and virtually no feeling in my lower body.

This whole experience was overwhelmingly healing for me in many more ways than I originally anticipated. I have massive amounts of medical trauma, mostly stemming from an abusive doctor that performed 5 surgeries on me when I was only 13 years old. To be able to feel safe in an OR for the first time in my life was such a gift, and I couldn’t be more thankful for that. Knowing that there are doctors out there that care for patients as humans, and not just case numbers, has completely changed my perspective.

The entire process of receiving and accepting this miracle was a beautiful illustration of the mysterious ways that God works, and how He will literally take me to the ends of the Earth (or just to Abilene…) to show me how much I’m worth to Him and the people that love me.

I realized shortly after this final surgery that this whole journey was always intended to end like this. Both of my implant surgeries served a purpose – the first one showed me that my pain could be healed. The second surgery showed me that my heart could be healed.

Healing is an ongoing process, and I still have a ways to go. But now that I’ve made it this far, I couldn’t be more thankful for where I’ve been.

Thankful for my miracle.

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

 

 

New Year, New Site

Teaspoon of Sprinkles, New Website

Hey friends! Happiest of New Year to you!

If you’re anything like me, you LOVE fresh starts and new beginnings. For some of us, this day is the beginning of new journeys towards dreams we can’t even fathom right now.

About a year ago, this little place right here was my dream. I had been writing for Teaspoon of Sprinkles for six months, and it was growing faster than I could believe. I knew that someday I wanted to truly own this place and the words that I wrote, but I never knew if that day would come. It was my goal to own the rights to my content, I wanted the power to choose who and what I worked with, and what I was able to share with the world.

If you’re not a blogger, I know what you’re thinking: “Ally, ToS has always been yours. It has always been your content. Your blog. Your site.”

See, it isn’t that easy. In the next few weeks I’ll dive into more of what it means to become an independent and self-hosted blogger and own your rights, but for now, just trust me that this is a huge deal. Like really huge.

Enough about me, what does this mean for you? Content UPGRADE.

In the last few months I’ve been contacted by companies and brands that I LOVE and want to share with you, but haven’t been able to. But now, you will have access to all of the surprises and deals that I have been holding onto for you.

You’ll get more consistent (shhhhh!) and quality content, along with some fun free things along the way.

Wow this is like my own version of Christmas!!!

I want to stop right here and say thank you to those who have made this transition possible. From the girls in my blogger communities, to my sister who tells me I’m pretty almost every time I ask, and my friends who stop me from doing stupid things but encourage me to chase my dreams. Every single one of you rock. A lot. Forever.

Okay, so where to now?

For today, feel free to get to know our new site. Under “contact” above, you can send me a message or pitch a deal if that’s what  you’re into! You can also find my Instagram feed over there and join in on the daily shenanigans.

Are you new here?

Welcome!!!!! Yay!!!!!! Head on up to the “About” section in the main menu, and learn about me (Ally) and my service doggie (Mali). I also recommend going back to these posts just to get a feel for what you might find here on any given day: Teaspoon of Sprinkles Part 1 and Part 2.

Make sure you look over there on the right side of your screen and subscribe to this blog, that way you will NEVER miss a post. Were you subscribed on the old site? Go ahead and subscribe one more time just to be safe. My content made it over here, but I’m not so sure my subscriptions did.

THIS IS SO EXCITING. Make sure you stay connected on all of the social medias, and check back often for fun new content. I promise not to let you down.

Leave  a comment down below and tell me what you would like to see more of here. I want this to be a place for you, just as much as it is for me!

With all the love,

A