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 January 3, 2026
Dear friends, As I reflect back on 2025, January started off looking very bleak. I had just recovered from yet another “mitochondrial crash” in December 2024, but my neck weakness was still significant and unresolved. I mentioned this many times, but I’ve never before experienced such severe muscle pain in my neck—it felt like my neck was doing a constant “plank exercise” 24/7. I cried so much and needed relief. 😭 Before this, I also truly took for granted how vital neck muscles are for ALL movement. Even simply standing requires neck strength to hold the head up. I was confined to my bed and the recliner because the neck weakness/pain was so debilitating. At the beginning of January was my long-awaited appointment with the neuromuscular neurologist at the University of Washington. But, the outcome was very disappointing because he simply took these symptoms to mean mitochondrial disease progression. My eyes are watering and my nose stings as I type this with emotion because I didn’t know (like I do now) what the following months would hold. I really did wonder if I was starting to die because not only did I have this disabling neck weakness but I also experienced severe nystagmus every single day (it never happened this frequently before). The brain is what controls eye movement, so my brain wasn’t getting enough energy needed for the simple act of moving the eyes. In February, after several blood tests came back with more “bad” autoimmune markers and I also started dealing with unusual joint pain in both elbows and shoulders, one of my doctors had me start taking 2 powerful antioxidants: N-Acetyl Cysteine (NAC) and Liposomal Glutathione. NAC, specifically, has shown that it can be beneficial for Lupus, an autoimmune disorder. We weren’t sure yet if my symptoms were early signs of Lupus, but my doctor recommended these antioxidants anyways for the mitochondrial depletion. When May came around, I once again had another “mito crash” with significant muscle weakness all over my body (not just in my neck), droopy eyelids, nausea, and increased pain. I was so thankful, though, that we were able to manage this one at home and I didn’t need to be admitted! Even more amazing was the fact that this was the month I noticed I could slightly lift my head half an inch off of the pillow (when lying down). Was God healing my neck? 🥹 June was a big month. As many of you know, 2 separate muscle biopsies show that I have Mitochondrial DNA Depletion Syndrome, but the doctors still can’t pinpoint the genetic mutation responsible for this depletion. So the OHSU metabolic team and I all wrote letters to apply to the NIH Undiagnosed Diseases Network (UDN). And God answered the first of many prayers as my case was surprisingly accepted. 🥲 I don’t currently have a recent update regarding this study as they told us it could take months or even years for anything to happen if anything happens at all (I should email them for an update). Last I heard, the team was analyzing all of my raw genetic data. At the end of June, my internal medicine doctor referred me to the Complex Pain clinic since I was still experiencing so much pain and needing high doses of pain meds. The specialist started me on Buprenorphine, but it’s been a rough go of it. It definitely helps the pain to become more manageable (another answer to prayer!), but it also causes horrible insomnia which I’m still dealing with. 😞 My sleep specialist said I’m basically experiencing a bad case of chronic jet lag—I’m simply exhausted and cannot fall asleep until 4:30-6:00 AM! 😭 A previous blog post shares about the “catch 22” I’m in. I’d so appreciate continued prayer for my sleep. It’s been very hard. :( July through September was amazing as I noticed that my neck weakness had improved a little more each day to the point that it eventually fully resolved….!! I truly could cry tears of joy and gratitude! 🥹🥹 Even my physical therapist started noticing that I didn’t have to hold my head up with my hands when moving around! God answered everyone’s prayers, and I fully believe he miraculously healed me in this area!! Yes, it could be that the 2 antioxidants helped, or it could be that I had finally recovered 9+ months later from something like Viral Myositis of the neck from fighting a viral infection in Hawaii in October 2024. My doctors just don’t know fully. But I am in awe at God’s lovingkindness and great mercy. 🥹❤️ 2 verses come to mind... One is from Ephesians 2:4–“But God, being rich in mercy, because of the great love with which he loved us..” And the other is Philippians 2:27–“Indeed he was ill, near to death. But God had mercy on him..” The phrase “But God” sticks out to me. It reminds me that God is the one who has a plan and purpose for our lives, and it may be totally different than what we think is best or what we’d like. I don’t know what I would say or how I would act if the neck weakness still persisted to this day.. It would be extremely hard, and I know I would struggle greatly mentally and spiritually. But I also know 100% that God would faithfully sustain me like he did during those long, dark months from October 2024 to May 2025 and on.. God’s mercy continues to be so evident as I’m physically in even better shape than I was back in 2023. 🥹 Aside from my sleep, I’m doing so well that I might even have to find a part time job sometime down the road! I don’t know how long this “stable” period will last, and I know life could quickly change again in the blink of an eye (like it has in the past).. But, while I’m stable, I’m having the MOST JOY feeling quite “normal” and being strong enough/having the energy to babysit my almost 6-month old foster nephew. 💙 He’s over 17 pounds now, and every time I hold him, it’s such a GIFT from the Lord to have the muscle strength for carrying/lifting him! I wanted to end this on a joyous note by sharing one last thing that happened in 2025–the opening of my Pain With Purpose Shop around my 33rd birthday this past October! ☺️ It’s a joy selling my handlettered designs (just a heads-up, my card inventory clearance sale ends on the 5th!). 😊 It’s also SO special that my church’s Care Ministry can send encouragement cards I’ve designed to those in our church body who are experiencing suffering. This gives me a little purpose since it’s sometimes hard not to feel useless living with a chronic illness (I’m sure many of you who are suffering can definitely relate..). 😢 Unless something major happens again, I think this might be my last health update for a while as I’m so enjoying this stable season—I continually thank God for it and don’t want to take one moment for granted! I love you all and am so grateful that you are here with me in the valleys and on the mountain tops. 💚 
By Kerissa Lee December 28, 2025
Lucy and I hope you all had a wonderful Christmas! 🎄❤️ Yesterday, she turned 5 years old!! Where has the time gone?! She brings so much joy and laughter to our whole family—we love her more than words. 🥰 To celebrate and as this year comes to a close, my Pain With Purpose Shop is having a sale—I would love to clear out some of my old card inventory to make room for fresh, new designs in 2026!! ☺️ All cards have been marked down to $1.50 each. In addition, I’m also happy to share a promo code for FREE “first class” shipping which will work for all orders of up to 8 cards (unfortunately, an order of more than 8 cards switches to priority shipping..). To apply this offer, enter the code GOODBYE2025 to deduct the “first class” shipping fee. ✨ This sale and promo code will last through January 5th, 2026! Please don’t feel pressure at all to order from me…some of you buy my cards at full price, so I wanted to mark the card prices down for a bit! I’m so thankful for you all—your many prayers all these years have truly uplifted and encouraged me. I pray you have a blessed and happy new year!! 🤗 Stay tuned for my annual “reflections” blog post… ❤️
By Kerissa Lee November 17, 2025
Dear friends, Thank you so much for praying for me when I had that bad reaction to the autoimmune medication last month. I’m so incredibly blessed by your love and support. ❤️ I saw rheumatology recently, and instead of trying to prevent actual autoimmune disease from starting, they want to just monitor without any medication therapy. In other words, they want to see if more symptoms like fevers or rashes will appear (besides the joint pain that I already experience).. The medicine I did try (which worsened my mitochondrial symptoms) is actually the “safest” out there, and the other treatments for autoimmune disorders are much harder on the body—the team doesn’t think I’ll tolerate those well.. It’s difficult for them to know if all the bad antibodies that have been found in my blood will cause “actual” disease, and only time will tell.. So the plan is to just monitor and follow up with them in February. I wanted to see if my body could recover from this setback without having my IV fluids switched to a higher dextrose percentage. But by the last week of October (week 3 of this mitochondrial flare), the muscle weakness and increased pain all over was sadly still persisting, so I told my doctor. He sent in a new IV fluids order with the higher dextrose, and I’ve been receiving it for about 2 weeks now. I have definitely noticed an improvement in the muscle weakness which has been a huge blessing from the Lord. It was such a gift to feel well enough to go to a friend’s wedding reception at my church last week. 🥹 My cup was filled because I haven’t been able to see so many church friends in years! Regarding the piece of plaque that traveled to a small artery in my retina, I just had the carotid duplex scan completed last Tuesday to see if there’s any narrowing in the neck arteries. I also have the heart echocardiogram scheduled for tomorrow. My biggest, ongoing struggle has been my sleep. I’ve sadly been in a “catch 22” situation for many months now. I mentioned before that I was started on a new and safer pain medication this year. A rare side effect is insomnia, and it’s simply horrible. Night after night, every single day, I’m not able to fall asleep until after 4-6 AM. 😢 Believe me, I’ve tried every type of trick…from different sleep medications that my sleep specialist has prescribed, to all sorts of sleep supplements, praying, listening to worship music or white noise, stopping caffeine intake, etc. Nothing helps. The thing is, if I didn’t take this “new” pain medication, the pain from Mitochondrial DNA Depletion Syndrome is difficult to manage and it’s like an 8-9 on the pain scale. So then I’m up through the night, in horrible pain, and not able to sleep. But when I do take this medication, the pain is manageable, and it’s much safer to be on... Yet, I can’t sleep well while on it... Catch 22. I don’t know what to do, and it’s hard not to feel alone in this struggle. I’m so thankful to God that my health in other areas has been pretty stable.. In fact, this month (November) marks ONE WHOLE YEAR since I was last admitted to the hospital! Isn’t that soo amazing? Aside from these occasional mitochondrial flares/crashes (which happened in December, May, and October), I’ve been doing incredibly well, now that the neck weakness has resolved. But, this sleep struggle persists day after day.. I would love to be able to attend my church’s morning service in person or do many other activities in the morning. 😞 But I’m super exhausted. So many times, I ask God, “How do I go on and keep doing this every single night?” One thing I’ve learned is that God’s grace is truly sufficient for each day. He is the one who supplies me with the energy and grace to keep enduring. It’s hard, and I don’t know how long this sleep trial will last.. But, as Thanksgiving draws near, I’m reminded that I do have so much to be thankful for. Some of the biggest things: being physically able to help babysit my 4-month old foster nephew, shopping at the grocery store, having hand strength to design new note cards like the ones shown here, no longer experiencing neck weakness, and much more. The verse from Zephaniah I recently hand lettered above has been so encouraging lately. God is right by my side; he is mighty to save and will keep helping me through anything that I face. ❤️