I had been at my grandma's house for our female cousins' "girl's week." We'd spend the week at grandma's house doing crafts, going to the park, playing in the back yard.... just a bunch of fun kid stuff. We'd done girls week every year since we were like 5.
At the end of 2006's girl's week, I decided to go on my cousin Jaki's family boat. My aunt and uncle picked us up and we headed to lake Lemon. We stopped in the marina by the dock and got soda and ice cream before heading over to board the boat.
After a few minutes, Uncle Scott started up the boat and we headed out to the center of the lake.
I had my foot resting near this pile of rope. I didn't think much of it.
Suddenly, the inner tube connected to this rope caught wind and went flying backwards. The rope caught my leg and coiled itself around my right calf.
The tube landed in the water and started pulling super tightly on my leg. I fell over in the seat into my cousin Nick's lap. The boat finally slowed to a stop and the rope released its grip on my leg.
I had a massive rope burn (1/4"-1/2" deep) wrapping around my leg and a gut-wrenching pain. I screamed and cried for a few minutes (can you blame me?) while Aunt Barb and Uncle Scott calmed me down. Uncle Scott had me stand on my left leg and attempt to put weight on my right leg.
Bad idea.
So, uncle Scott sped back to the marina and pulled as close to the road as possible. Aunt Barb ran to the van to bring it back. The Marina owner ran out and offered ice and towels (or something like that, I can't quite remember). They helped lift me out of the boat, and I hopped on my left foot into the van.
We got to the hospital, and my parents and some nurses were ready to help me out of the van and into a wheel chair.
We waited in the ER waiting room for awhile (SHOCKER, right?) and I was wheeled back to a hospital room. They X-ray'd my foot, and bandaged the wound up. The doctor came back and told us my fibula (small bone) had snapped in half, and I just about shattered the growth plate in my ankle.
I needed surgery.
I stayed overnight in the hospital, and the next morning they woke me up and wheeled me into surgery.
I remember feeling terrified. They let me bring this teddy bear in with me. They put a surgery hat on him and everything.
The surgery went well, but to my disgust, they put me in a cast. The doctor thought I would like a pink and purple cast. WRONG. I hated pink at that point in my life, Lime Green was my color back then. I survived that awful cast, though, because it was covered in ace bandages.
I spent the rest of that summer laying in bed or on the couch. People visited me, told me I was blessed, lucky to have survived. All that stuff. I never really thought about the possibility I couldn't have survived that... But a few years after the accident, someone explained to me I could have been pulled into the water near the propeller and lets just say... it wouldn't have been pretty.
A month after the accident, I went back in and had a second surgery. They removed the pins in my ankle. I still had to be in a cast, though. Lucky for me (with two weeks left of summer) they had invented such a thing as a water proof cast! Nifty, eh?
That was nice, I felt a bit like a kid again.
Eventually the cast came off, but the pain and swelling was still there. The doctor said that was to be expected. My leg had "been through a trauma, and could take a few months to completely heal."
I remember the pain seeming out of proportion to a recovering foot, but didn't think much of it.
We kept seeing my initial doctor for a little more than a year. November of 2007, the ankle still hurt. All the time. A weird burning and stabbing sensation. The doctor thought it was due to the hardware still in my fibula, as that can sometimes irritate the bone and skin etc. So, we decided I should go under the knife on thanksgiving break and get that removed.
A week after that surgery, the pain subsided substantially, I thought I was out of the woods.
I returned to playing volley ball that winter, and tried to move on with my life. The pain was still there, but it seemed kind of on and off.
When I went back to my doctor a few months later, I told him I still had pain. He couldn't figure it out. He told me he couldn't help me any more, and offered a list of pediatric orthopedic specialists we could look into.
We ended up with a pediatric orthopedic surgeon on the north side of Indianapolis. I looooooved him. He was genuine, and really wanted to figure out what was wrong. He suspected something called Osteochondral Dissecans. Basically, holes/lesions in my ankle's cartilage. He sent me in for an MRI, and he was correct.
We scheduled yet another surgery, and went in to fix those. After the surgery he told us he had to drill out more cartilage than expected, and there were more flaps of cartilage on the joint and a few more floating pieces than he had hoped. He thought with a few weeks of rest followed by PT, I'd be good.
Wrong again. Something was weird about this.
The pain was still there. Awful. Excruciating. I felt like I couldn't say anything, though, because I didn't want to disappoint yet another doctor.
Eventually, I told him. And he decided to set up a few different tests to figure it out. Once we figured out it was nerve pain, he wanted to do lumbar sympathetic nerve blocks. He set up three of them, and we set out. They actually did these in the OR and knocked me out for these.
And let me tell you, I woke up in absolute hell. My entire body was on fire and I was screaming in pain. The ridiculous nurse said I was exaggerating. My doctor came in and saw me in such distress and immediately upped my dosage of pain killers. He said that my response to the block was a good one though. That I definitely had what he thought I had.
Reflex Sympathetic Dystrophy Syndrome.
You know, after two years of wondering, I was excited to finally have the name of what I was facing. I knew it wasn't just surgery pain anymore. It was way worse then that.
He set me up with a Pain Management doctor at a local children's hospital and sent me for treatment.
When I got there, I immediately hated the doctors.
I was 14 or 15 at this point, and they were treating me like a 6 year old. Their bedside manner wasn't great, and they basically scammed us into paying two co-pays. Not ok.
That doctor started me on a bunch of medication, and sent me to a psychologist. Apparently to figure out what psychological reason was behind the pain I was feeling.
Eh, no no no no no no no no. It's not a psychological reason. It's a physical my central nervous system is malfunctioning reason. Dysautonomia. Nerves don't work. I DON'T WORK RIGHT.
He annoyed me, ugh.
After a year and a half, all I got were a few nerve blocks, prescriptions that seemed to have no correlation to my disease, a psychologist I wanted to punch in the face, a supposedly soothing meditation 'game' that gave me anxiety attacks and a whole lot of bogus.
We went back to my other doctor and begged for suggestions. He sent me to another Orthopedic Specialist on the north side of Indy. This guy was an adult doctor, though. I had another MRI and we found more Osteochondritis, yayyy!
So, yet again, I went under the knife. This one was similar to the last, more lesions than expected. I also apparently had a tendon slip into my ankle joint, so each time I took a step I was basically crushing it. Doesn't that sound like a joy?
bah. So this new specialist sent me to my current doctor. Another Pain specialist working in the same company as him. We went through another bout of nerve blocks, more medication, and such until the summer of 2011. (A little more than 1.5 years.)
The pain hadn't subsided, it wasn't reacting to the medications. The nerve blocks were barely lasting anymore.
That's when he suggested the Spinal Cord Stimulator. He sent me to a neurologist just down the street so I could start the process.
When I first saw him, at 16, I was his youngest patient to ever pursue a SCS. I'm still not sure if that should be considered an accomplishment or not... like, can I put that on job applications? Is that good enough? Probably not. Grr.
Anyways, he did an assessment of my pain, and I was sent to a local mental institution for a psychological test. They sat me down in a room, and for three hours I took a multiple choice test explaining that I was not a pyromaniac, sociopath, or anything like that. (Those are pretty easy things to fake, though. When they give you the option to fake it.... JOKING.)
A few weeks letter, we heard that I didn't pass.... Totally joking, I passed. (I was happy. I was a little bitter that I had to take this test, so I checked a few things I probably shouldn't have... but don't tell anyone. Our secret.)
So we moved into our four month process of convincing my insurance company that I would benefit from them spending upwards of $50,000 for me to get the implant.
After we were denied, my loverly doctor called up the insurance company and gave them a brief word. I'm imagining this conversation was very heroic on my doctor's side. he seems like the kind of guy to tell someone off (Plus, he's hot, foreign, and smells wonderful. Definitely one of my favorite doctors.)
So one afternoon in November, I got to have the trial implant. No anesthesia. Just numbing medicine.
...
...
...
THAT WAS NOT FUN.
I would never ever want to experience that again. Ever ever ever ever. It hurt so bad, and... yeah, no. Never happening again.
Anyways, I spent the weekend with that lovely trial stimulator. Best weekend of my life.
It actually cut the pain. It wasn't completely gone, but I was back to enjoying things. That was definitely a plus.
I got it taken out a few days later and went right back into a flare up. (don't you just love RSD.?) But thankfully, we were able to schedule my surgery for December 29th, 2011.
I was so excited. I couldn't wait for Christmas break so I could have the surgery and get my life back on track.
But lovely rsd had other plans.
The stimulator worked for the first few months, but has been shaky ever since. It works some days, some days it's a pain in the butt. They keep reprogramming me, and x-raying me to make sure the leads haven't moved. I started to feel the RSD pain in my back. seems as though the surgery caused a spread to my back..
Also, apparently some fibrosis has developed on the wires in my back and could be the cause of the lack of stimulation. Don't you just love it when your body does everything it can to make your life miserable?
So 2012 went by and it was another cycle of reprogram yourself, change the dosage on your meds. Try some physical therapy. Whoop dee doo.
2013 hit and everything started to skyrocket down.
In December I started to get these weird bouts where breathing was difficult. In January, I took a pain killer called Tramadol. I took my usual dose (I'd been on it for months, as needed) and woke up in the night and couldn't breathe. I tried to take in air, but I couldn't. I was freaked so I stayed up the rest of the night. After school, I came home, took some more Tramadol, and just laid on the couch to rest. I never fell asleep. Yet again, my lungs were closing up. It felt like someone was wringing all the air out of my lungs. I couldn't catch my breath.
After that, every deep breath I took in led me to a horrific, RSD like pain.
I went to an immediate care place to see if anything, physically, was wrong with my lungs. Nothing showed up in the radiology report, and my blood work was normal.
So, I went to my doctor who told me it was probably the RSD in my lungs.
Just what every young singer a month away from their college audition wants to hear!
That definitely put a damper on things. Thankfully, as of now, the breathing 'attacks' as I call them have majorly slowed down, and I don't get them often. The pain is still there when I breathe, though.
On February 12, I was diagnosed with Fibromyalgia. Another chronic pain disease, MY FAVORITE! :] haha, not. So now I have that to deal with, too. I just got a lot of fun stuff to deal with! Anybody wanna join me?! (Please don't.)
Anyways, in March, I traveled to Dallas, TX with the local choir I'm in. My stimulator completely shut down there, and I was barely able to walk. I kept going through the whole convention on a strict pain killer schedule, and tried my hardest to stay positive for the whole group. I don't like people seeing me when I'm as weak as I was then.
I came back home, and got an appointment with my programmer on Monday. I eventually got the SCS to charge, but the remote kept popping up error codes.
The programmer thinks that the plane we were on may have gone through some magnetic field that caused the SCS to reset itself, so we got it back to 'working' so that I could finally walk better and get back to my new normal.
Since then, I've talked with my doctor and we've decided that this SCS helps more than I know, but it doesn't cut the pain nearly as much.
That appointment was in the end of May. So now here I sit, at the beginning of July. The seventh day of it, to be exact.
In 7 years, I've had 15 surgeries and procedures.
I'm 18 years old.
I'm moving to college in 45 days.
I hang out with friends.
I laugh, I smile.
I sing and play instruments.
I try to be happy for the world.
But on the inside, I hurt. A deep, physical hurt that may never go away.
I've been dealing with this pain for seven years now. I know the drill. I know when to expect a flare, and I know what will cause it. I can even predict the weather a week before the weatherman. (But really. bad joints are 100% accurate. their technology is not.)
I don't know what the future holds. I'm scared out of my mind for college this fall. I don't know how I'll manage a music major's schedule with my crazy rsd and fibro flares. I'll have to take it day by day, just like the past seven years.
I've come a long way since the accident. I really hate the accident. I will always wish there was something I could have done to prevent it. To prevent the pain and burden this has been on my family.
But, there's nothing else I can do. I just keep praying, fighting, and hoping for a cure.