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. 🥺


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. 😔


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. 🥺 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). ❤️

May update (and sneak peek!)

By Kerissa Lee • May 23, 2025
How unspeakably wonderful to know that all our concerns are held in hands that bled for us. -John Newton

New Struggles

By Kerissa Lee • April 30, 2025
"I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world." -John 16:33- 

More difficult news..

By Kerissa Lee • April 9, 2025
Dear friends, I’d really appreciate your continued prayers. 🥺 Thank you for being on this journey with me through the good and bad. ❤️ Last year, I had a sleep study where I shared that I was diagnosed with moderate Central Sleep-Disordered Breathing (central apnea happens when the brain doesn’t tell your body to initiate breaths). It was noted that I stopped breathing about 17 times per hour. Well, my neurologist wanted me to get yet another sleep study last month to make sure this neck weakness hasn’t caused worsening apnea. And I’m sad to share that the results were much worse than last year’s. :( I thought last year was bad, but this latest study shows that I stopped breathing more than 40 times per hour (almost 400 times total through the whole night). 🥺 This was hard to hear and also such a reminder that God is the one who gives us “the breath of life” (Genesis 2:7) every minute. It’s by his mercy that we wake up to each new day. ☀️ What makes my case complex is that my esophageal sphincter has been affected by the mitochondrial disorder—it’s weak, so when air from a sleep machine is pushed down into my lungs, bad throat gurgling happens which keeps me up at night because my esophageal sphincter can’t close all the way like it should. :( My appointment with the rheumatologist was yesterday, and I wish I could say she gave a concrete diagnosis of what’s been happening these last several months…but that wasn’t the case. 🥺 I have to get more specific labs done. She also ordered x-rays of my hands and feet to check for possible spots of rheumatoid arthritis or calcinosis. The doctor said sometimes a new condition happens gradually, and it’s a wait-and-see type of situation. 😥 If these additional tests and labs still don’t give a clear cut answer, I’m so glad I have a second opinion with another rheumatologist at the end of June. This one sounds especially good because he’s a DO (doctor of osteopathic medicine) and offers a whole-body approach regarding treatment. Could you please pray something can be done soon as my quality of life continues to be rough, and these latest symptoms have been going on for half a year now. :’( Hard to believe October was 6 months ago! All this time, I’ve just been waiting.. I did ask my PCP at one of my appointments if he ever orders treatment for something even without a definite diagnosis, and he said “yes” which was encouraging to hear. His family leave is almost over, so I see him again soon. Just finished a virtual follow-up with another one of my amazing doctors this afternoon. 💜 She knows a very specialized neurologist in Washington who has his own private practice. She wants me to see him and hopes he’ll be able to connect all the dots and see the bigger picture. So blessed by all of my many doctors who try their best to help me! 🥲 I started the process in applying to the Undiagnosed Diseases program through Harvard (it got pretty delayed because of my 2 mitochondrial crashes in November and December). My application has been assigned to the Seattle clinical site. Please pray that the doctors who review my case will be able to accept me as a patient and find the genetic defect causing my mitochondrial depletion. The UDN acceptance rate is about 40%.. I saw this quote recently by Martin Luther and just had to hand letter it (so thankful for one of my neurologists who increased the anti-seizure medication which has been helping to decrease my hand tremors). ❤️ This statement by Martin Luther is such a beautiful reminder. All that’s happened lately has been the hardest trial, but I’m praying that I will persevere and bear this cross daily to bring honor to the Lord. I know my life is in his loving hands. I’m thankful for God’s promises in 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.” ✨