Reflections on the year 2023

Kerissa Lee • January 1, 2024

"Let us know; let us press on to know the LORD; his going out is sure as the dawn; he will come to us as the showers, as the spring rains that water the earth."

Hosea 6:3

Dear friends,

If you’ve been a long time reader of Pain With Purpose, you probably know my tradition of writing a post reflecting on the previous year. 😊 Get ready….this will definitely be my longest post in a while!

Compared to 2022 (which had no surgeries, hospitalizations, ER visits, or infections!), 2023 was a doozy. Looking back, I believe the Lord in His providence was giving me a nice long, stable break in 2022 to help prepare me for this past year. ❤️

God answered our prayers in that I was physically able to have a part in my brother Curtis and Courtney’s wedding in February. I had so much fun using my hand lettering skills to create all the wedding signage for them. Living with chronic health issues for the past 13+ years, I sometimes can feel stuck where it feels like you’ll always be known as the “sick person.” So it was such a blessing to join in the wedding festivities like a healthy, “normal” human being and just have fun as a bridesmaid! Truly a gift from God! We all have special memories we’ll never forget from that beautiful day. 😍

But, things started going downhill the following week. *Note: any sentence/paragraph you read in asterisks means the issue is ongoing.*

-Just 3 days after their wedding, I battled sepsis for the 5th time because my central line had a tiny hole in it (from old age) where bacteria got in. I underwent bedside surgery to get that infected line removed and have PICC line #1 placed. In addition to the many fevers, chills, vomiting/retching, severe nystagmus, and intense body pain, my multiple IVs in both arms kept blowing/infiltrating from all the heavy duty IV antibiotics and medications—it felt like my veins were being shredded. 😔

-I caught a bad GI infection (C-DIFF 😩) on top of being septic due to all the hospital germs. 😷

-Had surgery in April for a port-a-cath placement below my collarbone. My PICC line was removed, and I also had my j-tube replaced to a new one.

-One week later, I had a severe allergic reaction to the surgical glue over my port incision. Had to go to the ED to get PICC line #2 placed.

-About 5 weeks later, my port incision was healed well enough to get my port re-accessed and my PICC line removed once again.

-Soon after that, my somewhat new j-tube got stuck in the wall of my abdomen. Had to get it removed and have another one placed again. My general surgeon experienced great difficulty removing it, though, so she basically had to yank it out which was so traumatic—I bled a lot and burst into tears. 😭

-Due to that traumatic procedure, my abdomen started developing a huge abscess. My mom had to take me to the ED at 3 AM in August because of horrendous abdominal pain. I had to undergo bedside surgery to have the abscess opened up and get a drain placed.

-My port site also started developing another allergic reaction around the same time, so I had to get PICC line #3 placed.

-The abscess got even worse which required multiple visits to my surgeon’s office. The resident had to flush more of the pus out and pack gauze into the incisions since the drain wasn’t helping.

-I was prescribed high dose antibiotics, but they ended up causing neuro-toxicity symptoms. One symptom I experienced was hyperkinesia—I had to constantly keep moving, and it was terrible during the night!

-The area next to my j-tube never healed properly after the abscess was gone, so my doctors referred me to the wound care center. *I continue to see them every 2 weeks because the skin does not have healthy tissue and is also so raw and painful. It hurts terribly when I eat acidic or spicy foods because bile leaks around my tube and burns the area even more. I have to get a 3rd j-tube replacement soon..* 😣

-In September, my legs started aching constantly.. I’ve had small fiber neuropathy for many years now, and that pain feels like your feet are burning and on fire. When this deep, bone-like aching pain in my legs began, it was very hard to experience on top of the nerve pain. 🥺 *The deep aching leg pain together with the neuropathy still continues to this day. Sometimes my arms ache as well, and I just feel miserable with so much going on.*

-Every major infection and allergic reaction I dealt with throughout the year caused my mast cell activation syndrome (MCAS) to go haywire. Mast cells are immune cells that protect our bodies from pathogens and allergens. I sadly had constant reactions to the adhesive dressings over my PICC line, and my infusion nurses exhausted all hypoallergenic options. *I now have to have twice a week PICC dressing changes because my PICC site gets all inflamed/burned from reacting to everything (even cotton gauze under the dressing). The rash/itching is terribly aggravating day and night because I can’t scratch underneath the PICC dressing. The goal is to use my port once again and stop using the PICC (especially because PICCs aren’t a long term option, and time is ticking), but it can’t happen until my MCAS is more under control.* 😞

-In December, I sought a second opinion with another mast cell specialist a few weeks ago, and she agreed that my severe leg pain and other current symptoms are due to inflammation from the MCAS flare-up. *She started me on a treatment, but I will share an update on that another time.*

As you can see, there were some very dark days in 2023. 😢 When something new always happened on top of everything else, it got so overwhelming. I cried out to God many times, saying, “I can’t do this without Your strength. I need you, Lord!” And you know what? God heard each and every prayer. This verse came to mind from 2 Timothy 4:17: “But the Lord stood by me and strengthened me, so that through me the message might be fully proclaimed and all the Gentiles might hear it. So I was rescued from the lion’s mouth.” Every dark day…every time there was bad news…every moment when the pain was so heavy to bear, God armed me with the grace and strength to “share in suffering as a good soldier of Christ Jesus” (2 Timothy 2:3). And with His help, I made it through a rough year.

I don’t know what will happen in 2024. Maybe there will be even more dark days. But, no matter what happens ahead, Isaiah 50:10 reminds me, “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God.” So, as I pick up my cross daily this new year, I pray that I will keep trusting in the Lord and continue running with endurance the race that is set before me (Hebrews 12:1).

To close, I want to give thanks and praise to God for how He always stood by me and strengthened me through the highs and lows of 2023. He never abandoned me. He is a faithful and compassionate God! I also want to thank all of YOU who have stood by my side and lifted me up with your steadfast prayers. ❤️ I am so humbled each time you say a prayer on my behalf or like/comment on my posts with such caring words. Your love and kindness blesses me time and time again! 🥰

Happy New Year!

Love, Kerissa

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Another surgery 😞

By Kerissa Lee • July 25, 2026

Hi, friends, I thought I wouldn’t be posting for a while since I’ve been doing really well, but I’ve hit a bump in the road again and would appreciate your prayers. 💚 This past Tuesday the 21st, after nearly 12 years living with it, I had my jejunostomy tube removed completely. I thought it was going to be a simple process and that the stoma (hole) would close quickly within 30 minutes like they said. That didn’t happen, though, as the stoma started draining a ton! I couldn’t even leave the lobby and had to go back up to the clinic on the 8th floor to have an ostomy bag placed to collect all the small intestinal digestive juices that continually drained. Unfortunately, I’m experiencing a very rare complication called an enterocutaneous fistula. 🥺 I’m disappointed this is happening, but I’m not exactly surprised since my whole medical case with Mitochondrial DNA Depletion Syndrome has been rare from the very beginning.. I also don’t heal well due to connective tissue problems from Ehlers-Danlos Syndrome (case in point: my port site issues back in May when I had to have a new one surgically placed on the other side of my chest).. 😞 The clinic told me to keep emptying the ostomy bag and monitor the output. It wasn’t a fun 2 days. This whole process has definitely made me so grateful to God that I’ve never needed something like an ileostomy! TMI, but I lost almost a whole pound of fluid because so much was gushing/spurting out of the stoma every time I ate or drank. Losing so many electrolytes, I started experiencing symptoms of dehydration—weakness, high heart rate, and headaches. So yesterday, I had to go back and see the surgery resident who basically placed another j-tube (it was so painful again!). 😭 This is a temporary “plug,” and I’m bummed to say that I have to go to the operating room to have the jejunostomy tract taken down and the fistula repaired. This surgery will be happening as early as next week (it depends on my surgeon’s schedule).. She said it will be complex, especially because adhesions (scar tissue) form when a person has multiple abdominal surgeries.. I lost count what number this surgery/procedure will be, but I do know I’ve had more than 20! 😞 I know God is with me wherever I go and will supply me with the strength to endure yet another surgery like he always does. But, I’m still sad that I have to have more incisions added to my body. I shared the lyrics to this song before on an old blog post (the song is called It Is Well With My Soul by Matt Redman), but it immediately came to mind again when I was thinking of scars. As the song below said, it’s a reminder to me that my scars can be a testimony to others of God’s grace in my life and how he has brought me through every single pain and sorrow. In the Bible, I’ve always thought it’s so neat that Jesus still had his scars after he rose from the dead—he had a new body, and yet, his scars were still visible. ❤️ Our scars are a sign of grace in our lives Oh Father, how You brought us through When deep were the wounds And dark was the night The promise of Your love, You proved Now every battle still to come Let this be our song It is well (it is well) With my soul (with my soul) It is well, it is well with my soul

The end of an era ❤️

By Kerissa Lee • July 16, 2026

Dear friends, I shared in my last post how excited I was that my j-tube was going to be switched back to the low-profile version at an appointment on June 23rd. Well, that sadly didn’t happen because my surgeon wasn’t comfortable with how much pain, swelling, and bleeding I was still experiencing. It’s a long story and hard to understand unless you’re very familiar with j-tubes, but basically, she said switching wouldn’t be a good idea, and we could try again in a few months. Unfortunately, things have only gotten worse, and no matter how many times I adjust this j-tube, the balloon for some reason keeps getting lodged into my abdominal muscle—it causes horrible pain, and not even my pain medication helps! I almost went to the ED the other day…that’s how bad the pain has been. 🥺 After thinking and praying about it a lot, I finally decided to ask my surgeon if I could have my j-tube completely removed since she still can’t find the cause of why the balloon keeps getting stuck. It’s been nearly 12 years using one, so this is a big deal! I just feel like the tract is somehow failing since the surgery was so long ago. Unfortunately, it can’t be done until the last week of July since it’s a policy of the surgery clinic to not use the tube for 2 whole weeks before completely removing (don’t know the exact day of removal yet). I can’t believe it’s almost the end of an era! The Lord has been so faithful and given me strength to endure over a decade of having a constant tube sticking out of my abdomen. Some days were truly so rough—remember I had that huge abdominal abscess back in 2023 and had to have bedside abdominal surgery and drains placed in the ED? I couldn’t have done this without God’s help. 🥹 You might be wondering, “What happens if I get worse again or have more mitochondrial flares?” Thankfully, I still have my port, so if I was hospitalized many times again, I would be given IV medications and infusions. And, if I did possibly need a tube again, I could have a g-tube placed in my stomach which is a much smaller surgery than a j-tube placed in the small intestine. We’ll cross that bridge if we come to it! In other news, I’ve been continuing to do so very well mitochondrial-wise, and God has been gracious and merciful! I feel undeserving of this huge gift of health when so many others I know are struggling (please keep praying for my uncle who’s been in the ICU since March)!! 😢😔 Aside from all these tube issues, life lately has been so full, but in the best way. I was able to study and complete the training to receive my Pediatric First Aid/CPR/AED certification! I’ve been applying to different nanny jobs and even had my first interview last week! It would simply be amazing if it would work out to have a part-time nanny job for 1-2 days per week when I don’t babysit my foster nephew. Speaking of my sweet foster nephew, he recently turned 1!! He had a “One-in-the-Sun” 1st birthday party which was super cute and special! It’s been so neat to see God’s hand on his life from birth til now.. Considering he was in the hospital for a whole month after he was born, he’s truly come soo far, and life is very sweet with him in it! 🥹💙 On top of all that, I was finally able to take the DMV driver’s test, and guess what?! I PASSED!!! 🥰 So so happy and thankful I was able to complete this simple rite-of-passage that many people half my age often take for granted. I constantly think how huge of a gift it is to simply be physically well enough to drive around town. 🥹 After reading this, you might think I'm all healed! And while I am feeling so much better than before, I just wanted to share that I still do experience mitochondrial symptoms every day: spasticity (it often wakes me up during the night because my back muscles tighten/spasm a lot), central vertigo, minipolymyoclonus which causes muscle jerking and tremors in my hands, chronic pain, insomnia, and many other things. But, I'm so thankful to God for different medications I'm on to help these ongoing issues. There are good days and bad days, but I just look back and see how much worse I used to be! I don't know how long this stable period will last, but I continually thank and praise God for it! 🥹

June update (with happy news!)

By Kerissa Lee • June 17, 2026

Hello, friends, I just wanted to share a blog update and thank you all so much for your prayers these last several weeks. ❤️ They help me to persevere! I previously posted that the interventional radiology team said my old port needs to be removed because of the site being too exposed from skin breakdown. Well, on May 19th, I had a virtual appointment with the IR nurse practitioner. To my great disappointment, she didn’t want me to get a new port and said I need a central line instead. I tried explaining to her that all my previous central lines always got infected and caused sepsis, but she still wouldn’t budge. 😞 I left that appointment and cried. I kept reciting Romans 8:28 (“And we know that for those who love God all things work together for good, for those who are called according to his purpose”). I knew that God was in control, but I was still so sad.. The next day was my port removal surgery and central line placement. Many of you already know this from FB/IG, but I wanted to re-share the following here on my blog as well! When I met the attending physician who was going to do the surgery, I told him my whole story and asked if he could please consider placing a new port instead of a central line. And do you want to hear something soo amazing?! He nonchalantly said, “I can place a port!” I was so shocked! 🥹 I immediately felt God’s mercy and kindness in sovereignly arranging this specific doctor to be the one to care for me. Both surgeries were back to back, and everything was much more difficult than he was expecting! In his chart notes, he stated that it took “more than twice the usual time, an unusually large amount of materials, and required a very high level of technical expertise and skill.” It was a great challenge removing my old port because of scar tissue and because it was so embedded to my chest wall. 😥 He had to yank, pull, and manipulate a ton—all of that caused a huge bruise to form over my chest. When he used fluoroscopy (moving x-ray), he also saw on x-ray that there’s a 7 mm cylindrical foreign body in my chest (pictured below). He assumes it’s a retained port fragment from an old port surgery that happened years ago. We’re just going to leave it there.. 😟 I was awake the whole time because none of the sedation meds worked! I’ve unfortunately had more than 20+ surgeries/procedures, so my body has become immune to certain sedation meds. The team recommends that I have much stronger anesthesia next time.. So thankful that the Lord helped me through this painful process! In other news, I finally get to have this temporary, bulky j-tube replaced with a low-profile one on the 23rd! My GI surgeon was hoping that the temporary tube would give the site a break and help heal all the inflammation (which was caused by buried bumper syndrome when the balloon got stuck in the abdominal wall 2 months ago). And I think that did the trick because the site is no longer leaking a ton! 🥲 Praying that switching back to the low-profile tube doesn’t cause an uptick in pain/leaking.. Last week, I had a bit of a scare when blood started coming out of the j-tube stoma (hole) for several days. We don’t exactly know what caused the bleeding, but thankfully, it stopped! If it does happen again, the GI nurse practitioner ordered an abdominal ultrasound.. If you made it this far, I’d so appreciate continued prayers for my sleep. Still experiencing bad insomnia as a side effect from an important medication that I need. It’s so hard when I can’t fall asleep until after 5:30-6:30 AM every single day. 😔 I don’t know what else to do except take each day as it comes and lean on the Lord for endurance. 💚 Aside from this, still so grateful to God that I’m doing really well mitochondrial-wise! For those who may not remember, my naturopathic doctor at the OHSU pain center started me on 2 very strong antioxidants last year: liposomal glutathione and n-acetyl cysteine. When I started taking both regularly for several months, the neck weakness resolved and the overall muscle fatigue improved a lot. By God’s grace, I’ve physically been very stable which is a huge answer to prayer!! 🥹 P.S. It’s taken me a while to share this, but a few months ago, I added 11 new card designs to my shop. Here are some of my faves. ☺️ I’ve sadly run into another unfortunate predicament with the e-commerce site I sell on, but I’ll try to share that story another time.. 😕