Time.

Kerissa • May 19, 2017

Hello friends,

Last week, I had a follow-up with my neurologist.  I wasn’t expecting it, but she had a serious talk with me and my mom…  She told me that my mitochondrial disease is progressing, and because there’s no cure and no good treatments (except antioxidants, symptom management, etc.), she said there’s not much we can do except “keep me comfortable.”  I know I’ve been getting worse medically….I wasn’t this bad 2 years ago. But to hear my doctor tell me this was really hard, and I’m still processing all of what she said.  No 24 year old should have to hear their doctor tell you this.

She explained how our bodies “replicate” more and more mitochondria in order to continue living, but because of my bad mtDNA depletion (and the gene mutation that’s causing this which my doctors are still trying to pinpoint exactly), my mitochondrial DNA is getting more and more depleted as time goes on…

I don’t know what’s up ahead….but I will just keep doing what I’ve been doing the past several years and not give up.  Mito can take away so much, but what it can’t do is take away my hope in Christ.

I’ve been reflecting on Psalm 31 a lot lately.  There are a few verses that especially encourage me and help me.

“….But I trust in the Lord.  I will rejoice and be glad in your steadfast love, because you have seen my affliction; you have known the distress of my soul….you have set my feet in a broad place…

Be gracious to me, O LORD, for I am in distress; my eye is wasted from grief; my soul and my body also…

But I trust in you, O LORD; I say, ‘You are my God.’

My times are in your hand .

Be strong, and let your heart take courage, all you who wait for the LORD!”

~Psalm 31:6b, 7, 8b, 9, 14, 15a, 24

It’s so comforting to know that my times are in God’s loving hands.  Past, present, and future.  He sees my affliction and knows every time my soul is in distress (verse 7).  And He does something about it—He “sets my feet” firmly on the ground (verse 8b) so that I don’t stumble or keep falling from the heavy weight of this hard path.  So, as the end of this Psalm says, I will be strong and let my heart take courage after hearing this news.  I won’t despair.

________________

I said goodbye to my palliative care dr. this past Monday.  I so wish he didn’t have to go, but he’s leaving OHSU to become the director of the Serious Illness Care Program at Harvard which is a very prestigious position….my pain dr. told me that Boston was the first to start Palliative Care.

I was able to get a picture with my palliative dr. when I said goodbye.  I posted this on FB, but I know some of you aren’t on FB, so here it is..

On Tuesday, I had a follow-up with my pain dr.  My body has been becoming tolerant to my current pain med, and it’s not working as well—she said it’s good to rotate pain meds around every 3-6 months to prevent tolerance.  I have to soon start a certain med (which also helps pain) that is good for resetting the opioid receptors.

She also told me about a possible new treatment for my chronic intractable migraines which doesn’t involve medication of any sort. It’s this super cool non-surgical device that stimulates a specific nerve….kinda like a TENS unit but for migraines. We’re waiting to hear if my insurance will cover it.

Overall, this appointment was really helpful, and I’m so thankful she’s not going to move or leave OHSU!

Today I had my monthly follow-up with my GI specialist.  I lost more weight, even though I’ve been increasing tube feeds.  He said my oral intake needs to include more carbohydrates and fats, and he’s also adding an extra day of lipids (fats) to my IV nutrition.  I mentioned on FB how I threw up such a large amount one evening last week, even though I hardly ate or drank anything that day (I told him I was puzzled why I threw up so much without eating barely anything).  He explained that our stomachs make 1-2 quarts of stomach juices per day, and the small intestine is supposed to absorb it.  But because my small intestine (in addition to my stomach) is not working well, that’s why I just threw everything up.  He prescribed me another anti-nausea medication to take when my regular one doesn’t resolve the nausea.

Next week, my family and I leave PDX to travel to California!  My appointment with my mitochondrial geneticist in Pasadena is on the 25th and will last 3 or more hours. :O  This is my first time seeing him in clinic, although I have met him before at the UMDF symposium.  So grateful for his willingness to see me and go over all my gene mutations and variants of uncertain significance.  Praying he can offer some other types of treatments to slow the disease progression.

I’m excited to spend time with my whole family in sunny CA, too!

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!! 🥹 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! 🥲 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! 💚 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. 🥰 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! 💚 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! 🥹 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)! 🥰 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.. 
By Kerissa Lee • August 6, 2026
"God is our refuge and strength, a very present help in trouble." -Psalm 46:1