Reflections on this past year 2011

Kerissa • Dec 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 16 Apr, 2024
Read Part 1 if you missed it.  | Part 2 | Just 2 days after I was discharged from the hospital, I started experiencing severe nystagmus (shaking eyeballs) along with nausea, vomiting, and retching. I didn’t know what was happening and was again so scared. 😔 I was told to go to the ED since I wasn’t tolerating any of my oral medications. The doctors gave me IV fluids and lots of different IV anti-nausea and pain meds. They told me I needed to be admitted and talked with the neurology and internal medicine departments to see which one should admit me. But….to my dismay, both teams made a bad judgment call when they decided not to have me admitted (my mom has since talked with a patient advocate for guidance on what to do if “this” happens again). Even the ED observation unit didn’t want to take me because I was “too complex.” 🥺 I was sent home still vomiting and in so much distress (with mitochondrial disease, anything like untreated vomiting/diarrhea is a big “no-no” to put it simply because it’s a huge stress on the metabolic system). My body was really struggling, and I experienced very drooping eyelids and worsening weakness all over. The next day, I was seen by my PCP’s colleague, and after much discussion, he directly admitted me to the internal medicine floor. I’ll always be grateful to him for his quick action and the very thorough letter he wrote. There were sadly no beds available, so I waited at home. But, the following day, God was so kind to bless me with a private room that became available. Once I was inpatient, the doctors tried to get a handle on the nystagmus and vomiting. All the usual IV anti-nausea meds didn’t resolve things, so they gave me an “off-label” medication that can sometimes help nausea. That did the trick, but another issue soon arose—I started showing signs of mental confusion. I remember not being able to explain what was on my mind, and if I did talk, it didn’t make sense! For example, 2 nurses were in my room helping each other, and I made a comment about them being married. 🫠 Another instance, my family later shared that I asked them if they could see the ocean out the window. I can’t recall a lot of my time in the hospital because I was so confused.. My mom wondered if the confusion was from the off-label nausea medicine, so the team immediately discontinued it. By God’s grace, that did the trick…. Hospital life was definitely a roller coaster. You know that whack-a-mole arcade game? Once one problem ended, another popped up. After not receiving proper nutrition for many days, I started trying to eat orally again and resumed j-tube feeds, but for some reason, I wasn’t able to tolerate either like before. My stomach became so huge and distended….even with the feeding pump setting of just one teaspoon per hour. It didn’t make sense, especially since I tolerated a high rate of tube feeds two weeks earlier when I was admitted for the neurological weakness. I kept trying to increase the tube feed rate, but my GI tract didn’t tolerate it. The doctors brought up the possibility of TPN (IV nutrition). I was very discouraged and so homesick. With no progress increasing the formula rate, I did in fact have to be placed on TPN. Emotionally, it was a struggle dealing with this new problem on top of the mitochondrial crash.. 😢 Up next: Part 3…
By Kerissa Lee 13 Apr, 2024
Dear friends, It’s been almost 3 months since I last blogged.. So much happened, and it’s very hard to believe how quickly things changed. I know many already know the whole story. But for those who haven’t heard it, I will try to recap here. It’s quite the tale, but I wanted to share it on my blog to look back on because God truly carried me through the unimaginable. ❤️ When I requested urgent prayer for the sudden onset numbness and weakness in my whole left leg back in January, I had a routine follow-up already scheduled with my primary care dr. on January 25th. I was so thankful I could see him right away for this new issue. I showed him my worsening weakness, and he sent me straight to the ED to make sure I didn’t have a condition called Guillian-Barre Syndrome (GBS). While waiting for a bed to open up on the neurology floor, the muscle weakness spread to my right foot and up my right leg to the point that I could barely lift both legs up. Words can’t express how truly scared I felt that I was going paralyzed. 🥺💔 It was the hardest time of my life, and I continually wept, not just because of the physical pain (which was the worst leg pain I’ve ever experienced) but also because of the emotional distress.. The “foot drop” in both feet was so severe that my soles were almost parallel to the hospital bed when laying down. It was devastating. Due to the weakness, I couldn’t even walk to the bathroom and had to use a bed pan. The team was concerned about possible heart/lung issues, so I had to be placed on a continuous cardiac telemetry monitor (which is different than the standard one). Twice, they asked me if I’d be okay with life-saving measures like getting intubated (placed on a ventilator) if the weakness kept spreading like it was.. I underwent countless neurological exams by nurses, medical students, residents, and attending neurologists. To rule out GBS, a spinal tap had to be done as well as extensive brain and spinal MRIs (cervical, thoracic, lumbar, and sacral). Not feeling well, it was incredibly difficult to lay in the very narrow MRI tube for more than 2 1/2 hours without a break. When GBS was ruled out, we still didn’t know what was causing the weakness. To be honest, in a way, I WANTED to have GBS because they explained GBS has a good treatment. So, not knowing the outcome and prognosis was very hard. 😢 Looking back, I remember how I shared a verse from Isaiah when I wrote my “2023 reflections” blog post at the beginning of this year: “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God” (Isaiah 50:10). When I posted that on January 1st, I never could have imagined how dark life would get. I knew God had a plan, but I was still so terrified. And there was nothing I could do but trust him (even though my faith felt so weak while in the thick of it). I cried so much and struggled with great fear. But in the midst of that dark time, I thought of a well-known passage from 2 Corinthians: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” (2 Corinthians 4:16-17). A phrase stood out to me: “light momentary affliction.” This trial weighed heavily on my shoulders….it definitely didn’t feel “light” OR “momentary.” I had so many questions. Could I surrender all and trust that God has my best interests at heart? I prayed that he would grant me the eyes to see everything from an eternal perspective and use this hard time for his glory and good purposes. After spending 9 days on the neuro floor, I was sent home.. The neuro team attributed this whole event to a “very unusual mitochondrial crash.” And only time would tell how I would recover. Up next: Part 2…
By Kerissa Lee 23 Jan, 2024
Hi, friends, I had a whole other post ready to go with some good news, but instead, I have an urgent prayer request. I started experiencing sudden onset numbness, tingling, and weakness in my whole left leg, and it’s been so scary. 🥺 It just came on out of the blue. I was doing so well with physical therapy each week (able to walk fast on the treadmill and leg press 40 lbs), and now, I have to limp because my left leg is soo weak. I really want to avoid the ED as much as possible, so I saw one of my doctors today. She’s concerned I’m having a big motor nerve issue. 😭 The plan is to see a physical medicine specialist, have a nerve conduction study, get an urgent MRI done, as well as see my PCP and pain doctor on the 25th and 29th for further evaluation/testing. I know I already said this, but it really has been so scary to lose function so quickly. Can you pray that I will trust the Lord and not worry? It’s been very hard, so I’d really appreciate your prayers and support in the coming weeks. Thank you so much. ❤️
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