More Hard News

Kerissa Lee • September 14, 2024

"Weeping may tarry for the night,

but joy comes with the morning."

Psalm 30:5




Dear friends,


I received some more hard news these last few weeks, and I would be ever so grateful for your continued prayers. πŸ₯Ί


I shared in my last post that one of my doctors referred me to a movement neurologist for my tremor. Well, the referral was rejected once again, and when I was told that, I burst into tears. I just feel so alone when doctors don’t want to see me. :’( And it breaks my heart when I’m not able to get help for my symptoms just because I have a “rare disease they don’t treat.” I’m trying to give this movement neurologist the benefit of the doubt—maybe there’s an actual review board that looks at referrals before sending them off to the appropriate sub specialty. So maybe my referral never even reached this specific neurologist? I told my physical therapist who’s been part of the movement disorders team, and he is going to try to get in touch with the dr. and advocate for me. I don’t know what to do if he still won’t see me. I even tried to see a movement neurologist from a different healthcare system (outside of OHSU), but he isn’t accepting external referrals. 😒


I heard back from the metabolic geneticist. She was able to talk with the biochemical geneticist in Colorado, and sadly, he doesn’t have an IRB (institutional review board)-approved protocol yet which is needed to start the proteomics research study. I’m waiting to hear if he gave her an estimated timeline..


On top of all this, my port site started getting tender, swollen, and bruised. We don’t know what’s causing this since my labs are perfect, but we’re praying the site doesn’t develop an infection later on. Because my port site started looking worse these last few days, I have to stop using my port, and my GI dr. ordered a PICC line to be placed urgently. 😭 My heart is so weary from dealing with one thing after another. πŸ˜”


Needing a PICC again is a huge disappointment because my family and I are going to Hawaii in 3 weeks to celebrate my parents’ 40th wedding anniversary. And all these months leading up to it, I was so excited to take advantage of having a port vs. a central line—one can swim with a de-accessed port. Now that I have to get a PICC, I can’t swim or even try snorkeling. πŸ₯Ί You’re probably thinking to just enjoy being in Hawaii! Yes, I am SO happy that we’ll get to all be together as a family. But I’m also sad, too, at the moment because this is just another reminder how difficult it is to live daily with such a rare disease like mito.. I wish for just one day that I could have a break from all medical things. That’s why I continually long for Heaven. I will no longer have a broken body!


I don’t know why this couldn’t have happened until after our family trip. 😒 But one thing I do know—God wants me to keep trusting Him even through the numerous questions. ❀️


My heart was so encouraged through Lysa Terkeurst’s recent words, “If we stand firm on His goodness and know everything He allows is somehow flowing from that goodness, then we will have a lot less fear in trusting Him. Faith in God means being assured of His goodness even when what He allows doesn’t feel good, seem good, or look good right now.”


There are other medical issues going on which I will share in a future post. But, in the meantime, I’m trying to entrust all things to God’s loving care. “Therefore let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good” (1 Peter 4:19). ❀️

By Kerissa Lee • October 31, 2026
Dear friends, I just cannot believe it’s been more than 2 months since my last blog post! So much has happened, but most of it is very happy news!! ☺️ I saw my GI surgeon in September for my post-op appointment (check out my previous post if you missed what surgery I had in August). I’m all healed thankfully, although there is now a noticeable crater on my abdomen where my j-tube used to be. :( Scar tissue inside is what’s causing that, and she told me I need to be careful when carrying very heavy things because I could get a hernia in that spot. 😣 If that happened, she said she can easily repair it! I definitely don’t want another surgery, though! Aside from the short 4-day hospital stay I had in August for that abdominal surgery, I’m soo happy to share that the middle of November 2026 marks 2 WHOLE YEARS since I was last admitted to the hospital for a “mito crash!” I could cry from tears of happiness, and all praise and glory truly goes to God!! πŸ₯Ή My previous stretch of stable health lasted about 17 months (from September 2021 to February 2023), so I surpassed that which is simply amazing! Because my health has been doing so well, even more incredible news is that I got a part time job!! I found work through care.com since I LOVE babies and kids. I started occasionally taking care of a 6 month old baby girl—she’s so adorable!! I also sometimes take care of a 5 year old girl with her 3 year old brother. For both of those jobs, I’m just the backup (for example, when extended family can’t provide care). But, last week, another mom reached out on care.com asking if I could be her 2 daughters’ afternoon nanny every Monday—the oldest girl is 6 years old, and her little sister is almost 3 years old. It’s been so wonderful and fulfilling to be able to work. I never want to take for granted how much of a gift it is to have a job! πŸ₯² I do still have to rest my body on the days I don’t work because my muscle spasticity gets soo intense and painful. 😞 It feels like my back muscles just continually clench up and spasm. Very thankful for the muscle relaxant Baclofen which helps the extreme tightness! The chronic pain also worsens in my legs/back, and my hand tremors do, too (called minipolymyoclonus). Regardless of these symptoms, it makes me so happy and thankful to God for the ability to work! πŸ’š You might have noticed that I haven’t mentioned anything lately about my Pain With Purpose store. There are a bunch of reasons, but one of the biggest is that shipping has become more and more expensive which is a bummer. 😞 For the past year, whenever a customer places an order, I’ve been paying part of the shipping cost out of my own pocket because I wanted to keep the shipping fee low. I’ve also wanted to keep card prices low because I totally understand how expensive everything is in this economy. But in today’s digital world, a really nice card (at Papyrus, for example) could cost more than $9!! So charging only $2.75 for one of my cards on top of keeping the shipping fee low has been a challenge. After thinking about it a lot, I’ve made the decision to close my store—at least, for now! Next year, it’d be super cool to sell my items (cards, stickers, bookmarks, prints, and magnets) at something like a pop-up! 😊 So I will definitely be sure to keep you posted with any new shop updates! If you did place an order this past year, I wanted to say a big Thank You!! It meant so much to me, and I hope my cards were an encouragement. πŸ₯° I don't know what God has planned for my future regarding my health and everything else, but I just want to have faith and keep leaning on him for strength, through any future highs or lows. The Lord truly is faithful! Thank you so much for praying for me these past 16+ years. ❀️
By Kerissa Lee • August 21, 2026
Dear friends, I just wanted to thank you all so much for praying for me during my abdominal surgery on August 6th! πŸ’š All of your messages/emails really encouraged my heart! If you missed my previous post, I had to have an unexpected surgery to take down the jejunostomy tract and repair an enterocutaneous fistula (a rare complication from having a j-tube for 12 years). I truly felt your prayers, and the Lord answered so many of them as well! πŸ₯Ή My surgeon only had to remove about 1 1/2 inches of my small intestine which is great news! I was in the hospital for 4 days because my blood pressure was low and pain control was rough (it’s a long story, but pain management is complex due to a specific medication I take daily at home..). But aside from that and having an allergic reaction to the surgical glue, I’ve been healing well. Thank you again for praying!! God has been so faithful throughout this journey. I got a visit from my sweet foster nephew when I was in the hospital (2nd picture)! πŸ₯° I can’t wait until I can show you his face—he’s so adorable. 🩡 I’ve mentioned this before, but an important medication I take causes severe insomnia (still not falling asleep until anywhere between 3 AM-9 AM). 😞 But I saw my naturopath this past Monday, and she’s going to treat me for suspected cortisol spiking up during the night (which disrupts the body’s circadian rhythm). I’m thankful for the wisdom God gives her, and I’m excited to see if this treatment will help! It will take 6 weeks to see if there’s any benefit, but I first have to specially order it.. ο»Ώ
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1