As I write my first post on the last day of 2011, I reflect on this past year and how it changed my life. It’s been a wild ride of a journey! Before I go into writing about 2011, you should first know a little about my childhood. I was born with two small relatively minor birth defects, a hemangioma (a benign blood tumor) in the bottom of my right foot and a peri-auricular sinus near my ear. When I was 10 years old, my right peri-auricular sinus became infected, so it had to be repaired at Emanuel Children’s Hospital. It was a quick fix, and thankfully, I haven’t had any problems with it since. 🙂 But through my childhood years, the hemangioma made walking long distances quite difficult and sometimes, I had to tip-toe for days because it was too painful. I see God’s providence and goodness in these two little trials—He was preparing me for something harder to come.
At 17, I was ready for that hemangioma to be gone! So, thinking it would be such a small “problem-free” surgery, I had it removed on July 8, 2010 at Doernbecher’s Children’s Hospital. Going into that, little did I know what was right around the corner… That night, my right foot starting burning like it was on fire! It also felt like knives were being continually stabbed in my foot without rest. No pain medication, no matter how much I took, relieved this type of pain. Thankfully, I made it through the night without making a trip to the ER, and the next day was a little better. 🙂 A few weeks after that episode, I tried for the first time standing on two feet and taking a few steps. But it was too painful. I saw my doctor many times after that, but he couldn’t figure out what was wrong. He just thought I was healing slowly.
A couple months after my surgery, I developed a hypertrophic scar which was like a rock in my foot! Thinking that was the cause of my foot pain, I decided to have a cortisone shot directly in the scar to soften it. So on March 11, 2011, I had that done, but to my great surprise, it made everything worse! My foot became numb and felt dead. I didn’t know what was happening! That’s when I had to use crutches full-time. By God’s amazing grace, my dermatologists figured out what was wrong. They told me I may have reflex sympathetic dystrophy. My pediatrician confirmed it and immediately referred me to the OHSU pain center on the South Waterfront. Left untreated, RSD can spread or worsen, so a medical board at the Comprehensive Pain Center quickly reviewed my case and got me in the following week!
My pain management doctor’s name is Dr. Brett Stacey who is also the chief medical director of the CPC. He evaluated me and diagnosed me with Complex Regional Pain Syndrome which is the new name of RSD. He’s pretty sure this all started when I had that foot surgery. Life became a whirlwind after that appointment! Right away, I had to start taking this anti-convulsant drug called Gabapentin which is supposed to calm my nerves. Two days later, I saw a pain psychologist and a physical therapist at OHSU. In April, I had my first lumbar sympathetic block, but sadly, it didn’t give much pain relief. Those were hard months. Being a senior in high school, I didn’t get to really have a “normal” senior year. I had to pretty much drop out of some of my high school classes because the pain was so bad and I was dealing with some drug side effects. I even had to graduate from high school on crutches which was another frustration. I had to continually surrender to God and wanted to let this strengthen my faith, not tear it down. I never wanted to grow angry and bitter at God.
In May, my CRPS spread to my left foot. Things were getting worse, and because no amount of intensive physical therapy was helping, I ended up having to have a spinal cord stimulator implanted in my back in September. It’s been such a blessing! I know it’s from the Lord. When my stim’s on, it disguises some of the pain signals that travel from my feet to my brain! It’s so amazing. My pain’s not gone but it’s much better, and I don’t have to use crutches anymore! 🙂 Praise God!
Life was starting to slow down, but something new happened that again rocked my world! In November, I had a check-up with my pediatrician to receive some immunizations that were way overdue. She also wanted to check my white blood cell count, so my left index finger was poked and squeezed to obtain a few drops of blood. Well, I’m sure you can guess what happened…my nervous system got angry and now sends constant pain signals to my brain! My CRPS spread to my hand and now radiates up my arm! This has been a new struggle as you can imagine, but I’m still trusting God. He knows what He’s doing! It now hurts to do simple everyday things like buttoning my shirt, holding my toothbrush cup because it’s heavy, or even typing this post. And I can’t play violin now…yet. 🙁 So in addition to physical therapy, I now receive occupational therapy. We’re all praying that this and my doctor’s treatment plan will reverse the condition!
Throughout these past months, I have been encouraged and refreshed by following the story of baby Bowen, the son of Matt Hammitt (of the Christian band Sanctus Real) and his wife Sarah. Bowen was born with Hypoplastic Left Heart Syndrome and had to have numerous surgeries to repair his heart. This was a great trial for the Hammitt family, but what Matt Hammitt said struck me. Instead of being bitter, he said he chooses to “trade in his pain for purpose.” When I heard that, I was, like, “Wow. That’s what I want to do!” So, on this journey of living with chronic pain, I choose to trade in my pain for PURPOSE. It’s definitely not easy living with constant nerve pain, but I’m so grateful God gives grace for each day. He will get me through this, no matter how long it lasts! “And we know that for those who love God all things work together for good, for those who are called according to his purpose” (Romans 8:28). The following verse is kind of like my life verse: “…it is my eager expectation and hope that I will not be at all ashamed, but that with full courage now as always Christ will be honored in my body, whether by life or by death. For to me to live is christ, and to die is gain” (Philippians 1:20, 21 emphasis added).
So on this last day of the year 2011, I just want to encourage people who read this to have the same mindset this coming new year. 🙂 Even if you don’t have a painful health condition like me, may Christ still be honored in your bodies! Soli Deo Gloria!
I hope you enjoyed reading this really long post. 😉 May all of you have a happy new year!