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.
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,