Dear friends, As I reflect back on 2025, January started off looking very bleak. I had just recovered from yet another “mitochondrial crash” in December 2024, but my neck weakness was still significant and unresolved. I mentioned this many times, but I’ve never before experienced such severe muscle pain in my neck—it felt like my neck was doing a constant “plank exercise” 24/7. I cried so much and needed relief. π Before this, I also truly took for granted how vital neck muscles are for ALL movement. Even simply standing requires neck strength to hold the head up. I was confined to my bed and the recliner because the neck weakness/pain was so debilitating. At the beginning of January was my long-awaited appointment with the neuromuscular neurologist at the University of Washington. But, the outcome was very disappointing because he simply took these symptoms to mean mitochondrial disease progression. My eyes are watering and my nose stings as I type this with emotion because I didn’t know (like I do now) what the following months would hold. I really did wonder if I was starting to die because not only did I have this disabling neck weakness but I also experienced severe nystagmus every single day (it never happened this frequently before). The brain is what controls eye movement, so my brain wasn’t getting enough energy needed for the simple act of moving the eyes. In February, after several blood tests came back with more “bad” autoimmune markers and I also started dealing with unusual joint pain in both elbows and shoulders, one of my doctors had me start taking 2 powerful antioxidants: N-Acetyl Cysteine (NAC) and Liposomal Glutathione. NAC, specifically, has shown that it can be beneficial for Lupus, an autoimmune disorder. We weren’t sure yet if my symptoms were early signs of Lupus, but my doctor recommended these antioxidants anyways for the mitochondrial depletion. When May came around, I once again had another “mito crash” with significant muscle weakness all over my body (not just in my neck), droopy eyelids, nausea, and increased pain. I was so thankful, though, that we were able to manage this one at home and I didn’t need to be admitted! Even more amazing was the fact that this was the month I noticed I could slightly lift my head half an inch off of the pillow (when lying down). Was God healing my neck? π₯Ή June was a big month. As many of you know, 2 separate muscle biopsies show that I have Mitochondrial DNA Depletion Syndrome, but the doctors still can’t pinpoint the genetic mutation responsible for this depletion. So the OHSU metabolic team and I all wrote letters to apply to the NIH Undiagnosed Diseases Network (UDN). And God answered the first of many prayers as my case was surprisingly accepted. π₯² I don’t currently have a recent update regarding this study as they told us it could take months or even years for anything to happen if anything happens at all (I should email them for an update). Last I heard, the team was analyzing all of my raw genetic data. At the end of June, my internal medicine doctor referred me to the Complex Pain clinic since I was still experiencing so much pain and needing high doses of pain meds. The specialist started me on Buprenorphine, but it’s been a rough go of it. It definitely helps the pain to become more manageable (another answer to prayer!), but it also causes horrible insomnia which I’m still dealing with. π My sleep specialist said I’m basically experiencing a bad case of chronic jet lag—I’m simply exhausted and cannot fall asleep until 4:30-6:00 AM! π A previous blog post shares about the “catch 22” I’m in. I’d so appreciate continued prayer for my sleep. It’s been very hard. :( July through September was amazing as I noticed that my neck weakness had improved a little more each day to the point that it eventually fully resolved….!! I truly could cry tears of joy and gratitude! π₯Ήπ₯Ή Even my physical therapist started noticing that I didn’t have to hold my head up with my hands when moving around! God answered everyone’s prayers, and I fully believe he miraculously healed me in this area!! Yes, it could be that the 2 antioxidants helped, or it could be that I had finally recovered 9+ months later from something like Viral Myositis of the neck from fighting a viral infection in Hawaii in October 2024. My doctors just don’t know fully. But I am in awe at God’s lovingkindness and great mercy. π₯Ήβ€οΈ 2 verses come to mind... One is from Ephesians 2:4–“But God, being rich in mercy, because of the great love with which he loved us..” And the other is Philippians 2:27–“Indeed he was ill, near to death. But God had mercy on him..” The phrase “But God” sticks out to me. It reminds me that God is the one who has a plan and purpose for our lives, and it may be totally different than what we think is best or what we’d like. I don’t know what I would say or how I would act if the neck weakness still persisted to this day.. It would be extremely hard, and I know I would struggle greatly mentally and spiritually. But I also know 100% that God would faithfully sustain me like he did during those long, dark months from October 2024 to May 2025 and on.. God’s mercy continues to be so evident as I’m physically in even better shape than I was back in 2023. π₯Ή Aside from my sleep, I’m doing so well that I might even have to find a part time job sometime down the road! I don’t know how long this “stable” period will last, and I know life could quickly change again in the blink of an eye (like it has in the past).. But, while I’m stable, I’m having the MOST JOY feeling quite “normal” and being strong enough/having the energy to babysit my almost 6-month old foster nephew. π He’s over 17 pounds now, and every time I hold him, it’s such a GIFT from the Lord to have the muscle strength for carrying/lifting him! I wanted to end this on a joyous note by sharing one last thing that happened in 2025–the opening of my Pain With Purpose Shop around my 33rd birthday this past October! βΊοΈ It’s a joy selling my handlettered designs (just a heads-up, my card inventory clearance sale ends on the 5th!). π It’s also SO special that my church’s Care Ministry can send encouragement cards I’ve designed to those in our church body who are experiencing suffering. This gives me a little purpose since it’s sometimes hard not to feel useless living with a chronic illness (I’m sure many of you who are suffering can definitely relate..). π’ Unless something major happens again, I think this might be my last health update for a while as I’m so enjoying this stable season—I continually thank God for it and don’t want to take one moment for granted! I love you all and am so grateful that you are here with me in the valleys and on the mountain tops. π ο»Ώ
Lucy and I hope you all had a wonderful Christmas! πβ€οΈ Yesterday, she turned 5 years old!! Where has the time gone?! She brings so much joy and laughter to our whole family—we love her more than words. π₯° To celebrate and as this year comes to a close, my Pain With Purpose Shop is having a sale—I would love to clear out some of my old card inventory to make room for fresh, new designs in 2026!! βΊοΈ All cards have been marked down to $1.50 each. In addition, I’m also happy to share a promo code for FREE “first class” shipping which will work for all orders of up to 8 cards (unfortunately, an order of more than 8 cards switches to priority shipping..). To apply this offer, enter the code GOODBYE2025 to deduct the “first class” shipping fee. β¨ This sale and promo code will last through January 5th, 2026! Please don’t feel pressure at all to order from me…some of you buy my cards at full price, so I wanted to mark the card prices down for a bit! I’m so thankful for you all—your many prayers all these years have truly uplifted and encouraged me. I pray you have a blessed and happy new year!! π€ Stay tuned for my annual “reflections” blog post… β€οΈ
Dear friends, Thank you so much for praying for me when I had that bad reaction to the autoimmune medication last month. I’m so incredibly blessed by your love and support. β€οΈ I saw rheumatology recently, and instead of trying to prevent actual autoimmune disease from starting, they want to just monitor without any medication therapy. In other words, they want to see if more symptoms like fevers or rashes will appear (besides the joint pain that I already experience).. The medicine I did try (which worsened my mitochondrial symptoms) is actually the “safest” out there, and the other treatments for autoimmune disorders are much harder on the body—the team doesn’t think I’ll tolerate those well.. It’s difficult for them to know if all the bad antibodies that have been found in my blood will cause “actual” disease, and only time will tell.. So the plan is to just monitor and follow up with them in February. I wanted to see if my body could recover from this setback without having my IV fluids switched to a higher dextrose percentage. But by the last week of October (week 3 of this mitochondrial flare), the muscle weakness and increased pain all over was sadly still persisting, so I told my doctor. He sent in a new IV fluids order with the higher dextrose, and I’ve been receiving it for about 2 weeks now. I have definitely noticed an improvement in the muscle weakness which has been a huge blessing from the Lord. It was such a gift to feel well enough to go to a friend’s wedding reception at my church last week. π₯Ή My cup was filled because I haven’t been able to see so many church friends in years! Regarding the piece of plaque that traveled to a small artery in my retina, I just had the carotid duplex scan completed last Tuesday to see if there’s any narrowing in the neck arteries. I also have the heart echocardiogram scheduled for tomorrow. My biggest, ongoing struggle has been my sleep. I’ve sadly been in a “catch 22” situation for many months now. I mentioned before that I was started on a new and safer pain medication this year. A rare side effect is insomnia, and it’s simply horrible. Night after night, every single day, I’m not able to fall asleep until after 4-6 AM. π’ Believe me, I’ve tried every type of trick…from different sleep medications that my sleep specialist has prescribed, to all sorts of sleep supplements, praying, listening to worship music or white noise, stopping caffeine intake, etc. Nothing helps. The thing is, if I didn’t take this “new” pain medication, the pain from Mitochondrial DNA Depletion Syndrome is difficult to manage and it’s like an 8-9 on the pain scale. So then I’m up through the night, in horrible pain, and not able to sleep. But when I do take this medication, the pain is manageable, and it’s much safer to be on... Yet, I can’t sleep well while on it... Catch 22. I don’t know what to do, and it’s hard not to feel alone in this struggle. I’m so thankful to God that my health in other areas has been pretty stable.. In fact, this month (November) marks ONE WHOLE YEAR since I was last admitted to the hospital! Isn’t that soo amazing? Aside from these occasional mitochondrial flares/crashes (which happened in December, May, and October), I’ve been doing incredibly well, now that the neck weakness has resolved. But, this sleep struggle persists day after day.. I would love to be able to attend my church’s morning service in person or do many other activities in the morning. π But I’m super exhausted. So many times, I ask God, “How do I go on and keep doing this every single night?” One thing I’ve learned is that God’s grace is truly sufficient for each day. He is the one who supplies me with the energy and grace to keep enduring. It’s hard, and I don’t know how long this sleep trial will last.. But, as Thanksgiving draws near, I’m reminded that I do have so much to be thankful for. Some of the biggest things: being physically able to help babysit my 4-month old foster nephew, shopping at the grocery store, having hand strength to design new note cards like the ones shown here, no longer experiencing neck weakness, and much more. The verse from Zephaniah I recently hand lettered above has been so encouraging lately. God is right by my side; he is mighty to save and will keep helping me through anything that I face. β€οΈ ο»Ώ
Dear friends, At the beginning of October, I started taking a new medication for the autoimmune disease. I thought I was tolerating it just fine, but after several days passed, I began experiencing nausea, loss of appetite, weakness all over, and increased pain. π It’s like I’m experiencing another “mito crash.” I found out that this specific lupus medication affects mitochondria. That is, it causes an overproduction of reactive oxygen species (ROS). This, in turn, causes cell damage and oxidative stress. I sure wish the rheumatologists would have known about this before prescribing. But I have to remember that Mitochondrial DNA Depletion Syndrome is rare, and they’re not “mito experts.” Anyways, the last time I felt like this was back in May.. I’m so grateful to God that I haven’t needed to be hospitalized from this, but at the same time, I’m also sad that this happened at all, especially because I had such a nice stretch of stable health. I’d really appreciate your prayers, that this muscle weakness can resolve soon, and that this increased pain all over will get back to my baseline. Every time I have a “mito crash,” it feels like I’m fighting the flu which always sucks. The pain has been hard to bear. And whenever I’m in the thick of it, it’s difficult to remember that this too will eventually pass. π’ Pray that I will endure and follow Jesus’ example like this passage from Hebrews 12:1-2– “Let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross...” Thank you all so much for praying for me. β€οΈ
"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Psalm 62:2
“Be still, and know that I am God.” -Psalm 46:10 ο»Ώ
There is hope in every trial For I can trust the Lord He will turn my heart towards Him And help me bear the thorn So, in faith, I follow Jesus On the road not understood For I know that He is working For His glory and my good -CityAlight
"This hard place in which you, perhaps, find yourself, is the very place in which God is giving you opportunity to look only to Him." ο»Ώ Elisabeth Elliot
"I wait for the Lord, my soul waits, and in his word I hope." Psalm 130:5
"For I will satisfy the weary soul, and every languishing soul I will replenish." Jeremiah 31:25
Hi friends, It’s been a little while since my last medical update. I recently got back from another neurology appointment at University of Washington Medical Center. This appointment was with a headache neurologist regarding my migraines and other neuro symptoms. It was a very thorough visit, and I’m so thankful the Lord answered our prayers for […]
Hi, friends, I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! π Regarding the “new” symptoms I’ve been experiencing since April (migraines […]
Hi, friends, It’s been a little while since I shared a medical update. To recap, I’ve been experiencing buzzing in my right ear, and I lost the ability for my right eyeball to look to the right. I’ve also been dealing with nystagmus and migraines about every other day (sometimes every day). My pain doctor […]
I lettered this piece a couple years ago and never shared it until now. I’m so grateful to God that He “does not leave us as we are.” My earthly body is so broken from disease (more on that below), and to know that Christ will one day give me a new body—what a wonderful promise. β€οΈ For […]
Hi, friends. π I just wanted to let you know what’s been happening lately. In the middle of March, I started losing muscle control in my arms/hands. π If I’m holding something, my hand will flop but then regain control quickly. Or if I’m holding my phone to text, etc., my fingers will suddenly tap […]
Hi friends, *If you’re wondering why there are random bullet points, my website had an update, and when I press the “enter” button to make new paragraphs, it doesn’t seem to work. So using bullet points is the only thing I could think of to make spaces in between paragraphs. π
Anywho, I just wanted […]
Hi, friends, Wow, it’s been a while! I just wanted to check in and post a health update. π I’ve been home from the hospital for almost 2 whole months now which is so hard to believe. Time is definitely flying, but at the same time, my recovery from the mito crash has […]
Hi friends, I just had some prayer requests again. It’s been almost 3 weeks since I came home from the hospital, but I’m still really weak. So in addition to physical therapy, my doctor referred me to occupational hand therapy at OHSU as it’s so hard to open/hold things, hand letter, etc. (the above […]
Friends, could you please pray for me? After spending 10 long days in the hospital, I was finally able to go home on Friday. But it’s been very hard—I’m extremely weak all over, and I’ve also been having these horrible episodes where my heart rate shoots up, I feel hot and cold at the […]
Hey friends, Just wanted to check in with a medical update. Thank you so much for your continued prayers for me! I’m so grateful. The past few months have been a little rough since I last posted, and I’ve had to just take it one day at a time and lean on the Lord […]
* I shared this on Facebook and Instagram but wanted to post it on my blog as well since some of you here aren’t on social media. π * I originally had the background of this in blue, but then I remembered that today starts Mitochondrial Disease Awareness Week 2019! So I of course had […]
Hey friends, First of all, I’m sorry it’s been so long again since I last blogged. π Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, […]
Hey friends, It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately! In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood). My central line site was really tender and oozing a little. So my GI specialist quickly […]
Hey friends, It’s been more than a month since I last posted….and sometimes, no news DOESN’T mean good news. π This will be extremely long, but I want to document everything to remember….so here goes! About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there […]
Hey friends, I’m sorry it’s taken me so long to write an update on how my neurometabolic appointment in San Diego went! Been trying to pull all my thoughts together on what we learned at the appointment. After updating my mito dr. on all that’s happened since I last saw him, he […]
“Instead of a river, God often gives us a brook which may be running today and dried up tomorrow. Why? To teach us not to rest in our blessings, but in the blesser Himself.” -AW Pink Hey friends, I’m so sorry that I haven’t blogged since October!! π November was a pretty busy […]
Hello friends, I recently had a long appointment with my urology surgeon at Doernbecher’s. She explained how this is a very major bladder surgery….and I was so shocked to hear her say that this surgery can last up to 12 hours….(for example, it could start at around 7:30 AM but not end until 7:30 […]
Hey friends, It’s been over 3 weeks since I last posted, and again, there’s so much to tell and to process. π But I will try to post an update for each medical specialty: Podiatry~ On September the 19th, I had toenail surgery under anesthesia to correct the ingrown toenails. Everything went […]
Hey friends, Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my […]
“Pain is a forest we all get lost in Between the branches, hope can be so hard to see And in the darkness, we’ve all got questions We’re all just trying to make sense out of suffering, but You say I am blessed because of this So, I choose to believe As I carry this […]
“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms Last week, I threw up a ton again, and it never gets easier. π We don’t know what caused it this time…but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility. My feet […]
Hello friends, For those who didn’t hear, my grandma passed away the day after Thanksgiving. We had a beautiful service for her this past Saturday. We all miss her so much. :'( It sure is different not to have any more grandparents living. On November 20th, my GI dr. called, and I got diagnosed with […]
Hi everyone, Just wanted to let you know that things medically are going ok with me, but my grandma (my only remaining grandparent) is not doing well at all and is in the last days of her life due to congestive heart failure. π It’s been so hard to see her decline…the hospice nurse thought […]
Hey friends, My liver biopsy last Friday went very well! Thank you so much for praying! The doctors were able to obtain two specimens without complication. After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. π We weren’t sure what was going on and if […]
Hey everyone, I just wanted to let you know that I will be getting admitted the day after Christmas. I’m very thankful for my GI dr.—he’s working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly! I’m not doing very well. The pro-motility drug I’ve been […]
Hi everyone, We thought this week would have been my scheduled admission to the hospital since I haven’t tolerated glutamine, but we’re trying one last thing to re-mobilize my small intestine. My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from […]
Hey friends, I’d appreciate your continued prayers! My small intestine is in bad shape. Still can’t tolerate j-tube feeds or solid food orally. And I’m now getting distended with just liquids… π The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I’m being followed very closely by my GI […]
It’s so good to be back in Oregon!! π Missed my siblings so much! Last week alone, I had 8 appointments at CCHMC—that was crazy busy! But these past weeks were incredible, and I’m again so amazed at how thorough and caring the doctors/nurses are at Cincinnati Children’s Hospital Medical Center! I’m so blessed to […]
Hi, everyone! This morning, I saw the mitochondrial disease specialist and genetic counselor in the Human Genetics department at Cincinnati Children’s. We went over my history/new symptoms and discussed my nuclear mitochondrial exome sequencing results. For those new to my blog, I had my nuclear mitochondrial genes sequenced through a lab called Courtagen Diagnostics […]
Yesterday: Saw cardiology and orthopedics for my POTS disorder and back pain. Will update some other day about how these appointments went. π Today: It snowed about 4 more inches this morning here in Cincinnati! Sooo fun and beautiful. Had an abdomen x-ray to follow up on this GI test I had this past Thursday […]
I had a great neurology appointment today! Things are really moving along now. :o) This is what’s on my plate the next few weeks. She wants me to get another MRI, but this time it will be of my lumbosacral plexus nerves (isn’t that fun to say?). π She also ordered another diagnostic test called […]
Had a great day yesterday!! π So many of you have been so supportive and encouraging to me! Thank you for lifting me up in prayer. <3 That means so much to me. My pain dr. showed no sign of discouragement yesterday! He was very cheery and compassionate. π We discussed my MRIs and one […]
Everything is still raw, and I wept great big tears this morning, but I know all of you want to know the results of my MRIs, so here they are. I don’t have the report yet, but in one word, they are “normal.” I don’t understand. :'( I’ve asked God all morning, “Why??” I know […]
