Finding medical help

My life took a drastic change in the last four days, for the better. I had a doctor’s appointment on Thursday with my orthopedic doctor and we were all assuming the answer to my ongoing hip problem was surgery. I, even though I’m 20, with cerebral palsy have somehow avoided surgery my entire life. Even though surgery is usually the typical treatment option for cerebral palsy, whoever said I was typical!

I thought back a few weeks and remembered the headache and nausea after a fall that left me on the couch for a few days. The day I returned to work, I couldn’t sit down because of the pain in my hip. I couldn’t function during that time without painkillers- a last resort for me. Even painkillers didn’t do half good, but it took the edge off. It was more of a game of distraction. I just had to tell myself a story about old friends and family, traveling places I would never have the money to afford, nor the energy to have a good time. 

These stories got me through high school, and maybe what kept me sane throughout a lot of my life. (It’s also why I can tell a story!)

It was so long ago that it started I can hardly remember. I remember coming home from a day of shopping about an hour and a half away when I was around 15; I got in the car and there was a jabbing pain in my right hip to where I was crying asking my mom to do something. I ended up falling asleep. 

The next Monday we called my doctor to set me up at Nationwide Children’s Hospital. I was out of their care at the time because they didn’t want to do anything for me when I turned 12. When we returned, they had the same issue. I kept telling them what was wrong, my hip was hurting, I was nauseous etc.“Your hip is fine, and you just have anxiety. That’s why you’re nauseous.” I heard it over and over. All of these issues could be drawn back to cerebral palsy, and I wasn’t an overly anxious person. But don’t worry, they “took care” of my ankles that were not causing me much pain. I started Botox, which helps my ankles. I have been going there every 3 months since. I did a few trial meds, which messed me up even more. I accepted at 17 that I will be in pain for the rest of my life. 

I learned to deal with it. Put on a smile, take a warm bath after a long day, and distract myself when there is nothing else to do. It worked, I guess, I was functioning. I refused to complain, because no one could really do anything about it. I showed up and did the bare minimum and I was still surviving. 

Fast forward: I’m 20 and I busted out of pediatrics, terrified because everyone says that pediatrics takes better care of them. Plus, I could stay with orthopedic pediatrics until I was 26 if I wanted to, but I was exhausted. So I transferred to the adult center and changed over my primary care recently as well. I have had more of my health addressed within the last 6 months than I had since I was a young child. And turns out after a few scary moments I’m pretty healthy!

The new orthopedic doctor took X-rays of my hip practically three minutes after I met him, something I was basically begging my old doctor to do. I had a little spot where my leg and hip were grinding together. So yeah, I was in some legitimate pain. 

Last Thursday was the next time I saw him, and he poked around a bit. And because I was so nervous, I started laughing when he hit it. “Ahh, you’re a weird kid, is that the spot?”  

I nodded. 

He put Botox in that muscle, too. 

The next morning, I woke up and couldn’t tell if I was awake or not because my hip didn’t hurt, nor did my back. I turned over, and it was still in place, so it didn’t pop back in. I wasn’t expecting it not to hurt. It has been sore every morning since I was 16/17 years old, but I felt fine. I stood up, and it still felt fine. I worked, and it still felt fine. I went crazy in excitement. I told my coworkers, and I texted many people. I still feel good! I feel amazing. My mood drastically improved, and I feel more like myself. 

I know this is only temporary and someday my body will become immune to Botox, but I am grateful to feel better today!