Reflections on this past year 2011

Kerissa • December 31, 2011

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!

By Kerissa Lee April 16, 2026
Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹
By Kerissa Lee March 31, 2026
Dear Dr. Phillips, There aren’t enough words to express how thankful I am to have had such an amazing GI doctor like you these past 13 years. I think of all the hard challenges that have happened starting at age 20 and beyond: experiencing GI dysmotility, not being able to eat “normal” foods without terrible abdominal pain/distention, only tolerating soft consistencies like baby food pouches (which was not fun as a 22 year old!), needing an NJ tube placed down my nose, having a jejunostomy tube surgically placed, then no longer tolerating tube feeds, dropping down to 77 pounds, getting admitted the day after Christmas to start TPN, being surprised by the extremely high copper levels on my liver biopsy and starting treatment for that, going through septic shock which caused ischemic hepatitis (remember when my liver function test was 1674!), having sepsis 5 other times from multiple central lines and ports, requiring urgent surgery to remove my gallbladder, needing D10 added to my IV fluids for numerous mitochondrial crashes, and much more. Through all the highs and lows, you were there for me, and I truly feel like I hit the “doctor jackpot” to have had a GI specialist as caring, compassionate, knowledgeable, and kind as you. I shed quite a few tears to my chagrin at my last in-person appointment with you in February 2026, and I still do as I reminisce and write this letter. But, they aren’t just tears of sadness. They are also tears of gratitude—I know this journey would have been much more difficult if I didn’t have your wonderful care and support all these years. I’m so happy that I was able to get off of TPN back then after 5 years of being on it. Not only that, but I’m so thankful that I can eat orally to my heart’s content without pain and abdominal distention. I know that’s in part due to you, so thank you. From the bottom of my heart, thank you so very much for caring for me. I will never forget you, and I wish you all the best as you start your retirement. :’) With immense gratitude, Kerissa
By Kerissa Lee March 17, 2026
"God is always doing more than we know, working toward a good we will one day rejoice in." -Lysa Terkeurst