Challenging times.

Kerissa • March 23, 2020

Dear friends,

Just wanted to post a little update.  On Tuesday, I had another DEXA bone scan to check up on the osteopenia, and then I saw my endocrinologist right afterwards.  Sadly, I have more bone loss in my hips.  And because of my hypoparathyroidism (caused by the mitochondrial disease), I’m not able to absorb calcium and vitamin D which is vital for bones.  In other words, the parathyroid gland is what activates vitamin D so that it can be used by the body.  So she ordered a bunch of labs again to check my parathyroid (PTH) level, activated vitamin D level (which is a different test from the normal vitamin D test), and more.

We got the results back, and sadly, my doctor emailed me and said I have to start a bone injection that needs to be done every 6 months.  There are side effects with this injection, so I’d appreciate prayer that it won’t cause the possible “bad” effects like infection or jaw necrosis..  Thankfully, she has never had a patient experience the jaw bone death..  I also have to take an activated vitamin D medication called Calcitriol and keep taking 1200 mg of liquid calcium.  I did and still do take some naturopathic “homeopathic” medicine for this hypoparathyroidism issue, but unfortunately, it’s not helping, so that’s why we have to resort to this bone injection….  Since I’m only 27, my doctor wants to do as much as possible so that the osteopenia doesn’t progress to osteoporosis..

In addition, those 2 appointments this past Tuesday were my last for a while…. OHSU has cancelled all doctor/physical therapy appointments for the next 6 weeks.  My physical therapist will be doing some phone appointments with me, and OHSU is also working on the possibility of doing doctor appointments through telemedicine (video).  Not 100% sure on that yet..

You may be wondering what I’ve been doing now that I don’t have numerous appointments every week! Well, I’ve been able to read a lot of books (I do get nystagmus/oscillopsia (shaking of the eyes) unfortunately if I read too much at a time, so I have to pace myself), play the online Scrabble game app with my siblings, hand letter encouraging verses/quotes/lyrics, watch movies with my family, and start opening up an online shop to sell my lettering art on little things like magnets and vinyl stickers!☺

Also hope to resume my Punkpost job of hand lettering customers’ messages in cards sometime next week…  Punkpost has been pretty busy lately because people are sending more snail mail due to social distancing!  If you’ve never sent a card through Punkpost, your first card is free if you download the app on your phone!

 

Anyways, in the midst of this chaotic and uncertain time across the whole world, I’ve been reminded every day that the Lord is still on His throne.  Isn’t that so comforting?❤ He is sovereign and in control of big things like galaxies, planets, the ocean……and He is sovereign over the tiniest of things like molecules, bacteria, and viruses (COVID-19 included)..

Yes, this novel Coronavirus is so very scary.  And out of all the thousands of genetic disorders and diseases that could be listed, I was surprised to see that the CDC website specifically added mitochondrial disorders to the “ underlying medical conditions that may increase the risk of serious COVID-19 for individuals of any age ” chart below.  I guess even they know how much mitochondrial disease affects…

*Just a little side note: for those who may be new to my blog and have never heard of mito, mitochondrial disorders can affect all the organs of the body because organs need ATP (energy) to function properly (and mitochondria are the organelles that make energy).  That’s why I have dysautonomia, terrible chronic pain, fatigue, neurological, endocrine, kidney, gastrointestinal, muscle, eye, and bladder issues, have a central line in my chest for daily IV fluids with magnesium, potassium, and carnitine, a jejunostomy tube in my abdomen for medications, and have to use an adaptive-servo ventilator at night for my central/obstructive sleep apnea and weak lungs.  I also have a mast cell disorder, Wilson’s Disease, and Ehlers-Danlos Syndrome which my doctors aren’t sure if they’re a result of mito or separate from it..*

But you know what?  My life is and always has been in God’s loving hands.  We are all in God’s hands.  And the Coronavirus can’t and will never be able to change that.  Psalm 31:14-15a says, “But I trust in you, O Lord; I say, ‘You are my God.’  My times are in your hand.”  Friends, our days are numbered.  And I pray that we (and people all over the world) are humbling ourselves before the Lord, realizing that we are finite, and remembering that this world is not our home.❤

I saw the movie I Still Believe before all the theaters closed, and wow, it was so powerful and moving…I cried buckets.. I highly recommend seeing it!  What a powerful testimony of God’s grace in Jeremy Camp’s life in the midst of his 21 year old wife’s death to ovarian cancer.  Instead of being bitter and angry at God for his wife’s death, he chose to walk by faith and BELIEVE in the Lord’s faithfulness…His truth…His holy word.  I especially love this line from his song: “Even when I don’t see, I still believe.” What a beautiful example that we can all learn from during this pandemic!

I wanted to end this post with a poem that I read from Streams in the Desert.  I hope it encourages and uplifts you during this challenging time!  Know that Jesus loves you unconditionally!  Let’s walk by faith, and we will get through this together!❤

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.. 😕 
By Kerissa Lee May 15, 2026
Hi, friends, Last week, I unfortunately caught norovirus from my parents who caught it most likely from a wedding. 😞 All the vomiting caused dehydration, and my heart rate was high (up to 150 bpm). Every 30 minutes, I kept getting a notification on my Apple Watch saying that my heart rate was too high. Thankful I didn’t have to get admitted and could infuse the rest of my IV bags here at home. My neck is showing signs of weakness like after the time I got sick in Hawaii. 🥺 Really praying the muscles are just trying to recover from the vomiting/dry-heaving.. On top of that, the skin at my port site has sadly been breaking down over time. My dr. ordered a PICC line for me to let the port site heal. But the IR (interventional radiology) team said I need to have my port surgically removed because the site is “too exposed.” Definitely wasn’t expecting that! 😥 The IR team wants me to get a central line instead of another port, but I tried explaining to them that I’ve had sepsis too many times from multiple central lines. Plus, my quality of life is so much better with a port because I can shower when the needle is de-accessed. That’s just one of the reasons.. If I had a central line, I’d have to cover it and put tape all over which is not fun. I have a virtual appointment with someone on the IR team this coming Tuesday. Could you please pray the radiologist will be understanding, compassionate, and willing for me to have another port placed? I know this is in God’s hands regardless of the outcome. 💚 Surgery to remove my port and place something new (whether it’s a port or central line) is this coming Wednesday.. We’ll know the time the day before.. I’ve been reading a memoir by a young mother named Amber Emily Smith who tragically lost her 3-year old son to drowning in their family’s pool. In her book, she shared the story of the poet Annie Johnson Flint who developed a severe arthritis that left her hands disfigured and also caused her unable to walk. It was in the midst of her suffering that she became a poet. I’m sure many of you have read this poem before, but it’s such an encouraging one, and I hope it fills your heart with hope. ❤️ “God hath not promised smooth roads and wise, Swift, easy travel, needing no guide; Never a mountain rocky and steep, Never a river turbid and deep. But God hath promised strength for the day, Rest for the labor, light for the way, Grace for the trials, help from above, Unfailing sympathy, undying love.”
By Kerissa Lee April 16, 2026
Hi, friends, I just wanted to write an update on what’s happened since my last post. Sadly, the 2 different tube changes haven’t helped, and there’s still so much leaking around the tube. 🙁 The abdominal pain was decreasing each day, but for some reason, it has ramped up again and has been steadily getting worse the last several days. The pain is sharp and throbbing—it also hurts to use my abdominal muscles. I saw my primary care dr. this past Friday, and he ordered an urgent CT scan. I had that done this past Monday, and the scan shows that the balloon on the tube is lodged in my abdominal wall (it’s called buried bumper syndrome). 😥 So painful, but I’m thankful for answers! I actually had this issue many years ago, and usually, changing the tube size helps. But we’ve already tried 2 different tube sizes in March which hasn’t helped. I don’t know if the tract got damaged or what.. My PCP messaged the surgery team twice now, but they’re not responding still. Ever since my general surgeon left OHSU 2ish years ago to practice in New Orleans, it hasn’t been a good transfer to a different team. 😢 In addition, the CT scan also revealed that I have ground glass opacities in my left lung, so I have to go through work-up for that as well to figure out the cause.. Aside from these latest issues, I’m praising God that my mitochondrial disease has been stable still!! So thankful for God’s grace and faithfulness. The day I got my CT results, I read this excerpt below from one of Joni Eareckson Tada’s daily devotionals, and it was like the Lord was speaking right to my heart. I hope it’s an encouragement to you. ❤️ “Present pain and afflictions tend to heighten future joy. When is peace the sweetest? Right after the conflict. When does a cold drink taste best? When you’ve become very thirsty. When do you appreciate rest the most? After hours of hard labor. When is joyful company most pleasant? After enduring long days of loneliness. The truth is, our recollection of past sufferings may one day enhance the bliss of heaven. Eternity with the Lord will be so much more heavenly to those of us whose faith has been tested, battered, and tried, time and again.” -Joni Eareckson Tada One more thing.. I’d really love prayers for my uncle (my dad’s older brother). He’s been very sick in the neuro ICU with serious issues. First pneumonia, then bacteria in his spine which later broke his back. He had a major spinal surgery but still can’t move his legs. 🥺 On top of that, his kidneys started failing, so he had to be placed on continuous dialysis. He also had to be put on a ventilator due to fluid in his lungs. Then, he still couldn’t breathe well, so he had to get a tracheostomy tube placed in his neck. 🥺 Despite all this, he and his family are so strong and trusting the Lord which is a huge testimony to all of us and to the ICU. Could you please pray for peace, strength, and healing over his body? I know he and his family would be so grateful for your prayers. 💙 P.S. I wish I could show you my foster nephew’s sweet face in this photo from Easter Sunday! He is now 9 months old—the most precious and adorable little boy!! Our lives are so much sweeter with him in it. 🥹