Read Part 1 and Part 2 if you missed it. | Part 3 | After numerous days inpatient, I was ready to begin physical therapy at home and work my way off the TPN (IV nutrition). On February 19th, I ended up getting enrolled into a fairly new 1-year old program called “Hospital at Home.” It’s a weird concept, but those who do HAH are still considered inpatient—the only setting that’s different is you can sleep in your own bed and the nurses come to your home. You also are connected to doctors virtually through a tablet. In theory, that probably sounds amazing, but for complex patients like me, I regretted doing HAH because it was complicated and stressful. For example, the leg pain was still so severe, and each time I took pain medicine every 2 hours, I had to log onto the tablet and talk to the nurse who charted everything…. Even during the middle of the night, I had to show the nurse which meds I was taking and what dosage. It unfortunately wasn’t restful, and there were a bunch of other challenges while I was with HAH. By the next morning, I was definitely ready to be discharged from the “hospital” since a lot could be done outpatient. Around 11:45 AM on February 20th, a nurse practitioner came to my house to make sure I was medically stable and ready for discharge. She agreed I was because my vitals were perfect. She left, and another nurse was scheduled to arrive sometime in the afternoon to stop my TPN for the day. But, in the blink of an eye, things changed yet again and the nystagmus suddenly came back with a vengeance. I could barely see out of my eyes (because they shook so much), and when I went to lay down, I asked my mom if the heat was on. She said yes, but I felt soo cold. When the last nurse arrived to stop the infusion, she took my vitals which showed that I spiked a high fever out of the blue. I was so devastated by this turn of events and cried, “I can’t do this again.” 😭 I felt weary, down to my very bones. Experiencing all my usual sepsis symptoms (fever, chills, high heart rate and respirations, severe low back pain, etc.), I hit rock bottom and was extremely distressed that I had to go back to the hospital. 😔 While the doctors scrambled to find a bed available for me, I physically got even worse. During that scary and emotional time, the nurse was so compassionate and caring. I know God in his loving kindness handpicked her especially for me that day. She stayed right by my bedside and encouraged me with words filled with hope. 🥹 She saw a devotional by Joni Eareckson Tada on my nightstand and asked if I was a believer. I nodded, and she immediately began praying for me. 😭❤️ In the midst of this whole trial, some days God felt far away. 🥺 I could really resonate with the psalmist’s cries—“Why are you so far from saving me, from the words of my groaning?” (Psalm 22:1) But when my nurse prayed for me, it was in that very moment I felt God’s presence and peace so near. It was like he knew I needed some tangible comfort to hold on to. I felt so seen and loved by him. I’ll never forget the sweet nurse he sent and the prayers she lifted up. ❤️ Through her, the Lord revived my soul to prepare me for this latest battle. Up next: Part 4…
Read Part 1 if you missed it. | Part 2 | Just 2 days after I was discharged from the hospital, I started experiencing severe nystagmus (shaking eyeballs) along with nausea, vomiting, and retching. I didn’t know what was happening and was again so scared. 😔 I was told to go to the ED since I wasn’t tolerating any of my oral medications. The doctors gave me IV fluids and lots of different IV anti-nausea and pain meds. They told me I needed to be admitted and talked with the neurology and internal medicine departments to see which one should admit me. But….to my dismay, both teams made a bad judgment call when they decided not to have me admitted (my mom has since talked with a patient advocate for guidance on what to do if “this” happens again). Even the ED observation unit didn’t want to take me because I was “too complex.” 🥺 I was sent home still vomiting and in so much distress (with mitochondrial disease, anything like untreated vomiting/diarrhea is a big “no-no” to put it simply because it’s a huge stress on the metabolic system). My body was really struggling, and I experienced very drooping eyelids and worsening weakness all over. The next day, I was seen by my PCP’s colleague, and after much discussion, he directly admitted me to the internal medicine floor. I’ll always be grateful to him for his quick action and the very thorough letter he wrote. There were sadly no beds available, so I waited at home. But, the following day, God was so kind to bless me with a private room that became available. Once I was inpatient, the doctors tried to get a handle on the nystagmus and vomiting. All the usual IV anti-nausea meds didn’t resolve things, so they gave me an “off-label” medication that can sometimes help nausea. That did the trick, but another issue soon arose—I started showing signs of mental confusion. I remember not being able to explain what was on my mind, and if I did talk, it didn’t make sense! For example, 2 nurses were in my room helping each other, and I made a comment about them being married. 🫠 Another instance, my family later shared that I asked them if they could see the ocean out the window. I can’t recall a lot of my time in the hospital because I was so confused.. My mom wondered if the confusion was from the off-label nausea medicine, so the team immediately discontinued it. By God’s grace, that did the trick…. Hospital life was definitely a roller coaster. You know that whack-a-mole arcade game? Once one problem ended, another popped up. After not receiving proper nutrition for many days, I started trying to eat orally again and resumed j-tube feeds, but for some reason, I wasn’t able to tolerate either like before. My stomach became so huge and distended….even with the feeding pump setting of just one teaspoon per hour. It didn’t make sense, especially since I tolerated a high rate of tube feeds two weeks earlier when I was admitted for the neurological weakness. I kept trying to increase the tube feed rate, but my GI tract didn’t tolerate it. The doctors brought up the possibility of TPN (IV nutrition). I was very discouraged and so homesick. With no progress increasing the formula rate, I did in fact have to be placed on TPN. Emotionally, it was a struggle dealing with this new problem on top of the mitochondrial crash.. 😢 Up next: Part 3…
Dear friends, It’s been almost 3 months since I last blogged.. So much happened, and it’s very hard to believe how quickly things changed. I know many already know the whole story. But for those who haven’t heard it, I will try to recap here. It’s quite the tale, but I wanted to share it on my blog to look back on because God truly carried me through the unimaginable. ❤️ When I requested urgent prayer for the sudden onset numbness and weakness in my whole left leg back in January, I had a routine follow-up already scheduled with my primary care dr. on January 25th. I was so thankful I could see him right away for this new issue. I showed him my worsening weakness, and he sent me straight to the ED to make sure I didn’t have a condition called Guillian-Barre Syndrome (GBS). While waiting for a bed to open up on the neurology floor, the muscle weakness spread to my right foot and up my right leg to the point that I could barely lift both legs up. Words can’t express how truly scared I felt that I was going paralyzed. 🥺💔 It was the hardest time of my life, and I continually wept, not just because of the physical pain (which was the worst leg pain I’ve ever experienced) but also because of the emotional distress.. The “foot drop” in both feet was so severe that my soles were almost parallel to the hospital bed when laying down. It was devastating. Due to the weakness, I couldn’t even walk to the bathroom and had to use a bed pan. The team was concerned about possible heart/lung issues, so I had to be placed on a continuous cardiac telemetry monitor (which is different than the standard one). Twice, they asked me if I’d be okay with life-saving measures like getting intubated (placed on a ventilator) if the weakness kept spreading like it was.. I underwent countless neurological exams by nurses, medical students, residents, and attending neurologists. To rule out GBS, a spinal tap had to be done as well as extensive brain and spinal MRIs (cervical, thoracic, lumbar, and sacral). Not feeling well, it was incredibly difficult to lay in the very narrow MRI tube for more than 2 1/2 hours without a break. When GBS was ruled out, we still didn’t know what was causing the weakness. To be honest, in a way, I WANTED to have GBS because they explained GBS has a good treatment. So, not knowing the outcome and prognosis was very hard. 😢 Looking back, I remember how I shared a verse from Isaiah when I wrote my “2023 reflections” blog post at the beginning of this year: “Let him who walks in darkness and has no light trust in the name of the Lord and rely on his God” (Isaiah 50:10). When I posted that on January 1st, I never could have imagined how dark life would get. I knew God had a plan, but I was still so terrified. And there was nothing I could do but trust him (even though my faith felt so weak while in the thick of it). I cried so much and struggled with great fear. But in the midst of that dark time, I thought of a well-known passage from 2 Corinthians: “So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison…” (2 Corinthians 4:16-17). A phrase stood out to me: “light momentary affliction.” This trial weighed heavily on my shoulders….it definitely didn’t feel “light” OR “momentary.” I had so many questions. Could I surrender all and trust that God has my best interests at heart? I prayed that he would grant me the eyes to see everything from an eternal perspective and use this hard time for his glory and good purposes. After spending 9 days on the neuro floor, I was sent home.. The neuro team attributed this whole event to a “very unusual mitochondrial crash.” And only time would tell how I would recover. Up next: Part 2…
"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." 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!! 😂 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. ❤️ For […]
Hi, friends. 🙂 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. 😔 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. 😅 Anywho, I just wanted […]
Hi, friends, Wow, it’s been a while! I just wanted to check in and post a health update. 😊 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. 💚 * 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. 🙁 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. 🙁 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!! 🙁 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. 🙁 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. 🙁 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. 🙁 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. 🙁 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… 🙁 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!! 🙂 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. 🙂 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?). 😉 She also ordered another diagnostic test called […]
Had a great day yesterday!! 🙂 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. 🙂 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 […]
